AID .198 956

TITLE

INSTITUTION

TEPORT NO

DATE

'110TE

DOCUMENT RESUME

PS 012 112

Better Health for Our Children: A National Strategy.

The Report of the Select Panel for the Promotion of

Child Health to the United States Congress and the

Secretary of Health and Human Services. Volume IV:

Background Papers.

Public Health Service (DHHS), Rockville, Md.

DM-PBS-79-55071

81

925p.; For other volumes of this report, see PS 012

109-111 and PS 012 137.

SuperintPr.dent of Documents, Government Printing

Office, Washington, DC 20402 (Stock No.

017-002-00148-7, $10.00).

AVAILABLE FRCS U.S.

EM PRICE MF06/PC37 Plus Postage.

DESCRIPTORS Adoleszents: *Background: *Children; *Females;

Financial Support: *Health Needs; Health Personnel:

Health Programs: *Health Services; Infants;

Information Needs; Policy Formation; *Pregnancy:

Program Administration: Program Development; Research

Needs; Workshops

ABSTRACT

This fourth volume of the 1981 Report of the Select

Panel for the Promotion of Child Health presents a collection of

cemmissioned papers prepared in order to provide working groups of

the panel with background information en major areas of health care

:'ad health policy toward children and pregnant women. The papers are

:grouped according to the following topics: health protectill and

I-promotion: health services needed by children, adolescents, .r13

'pregnant women: access of children and pregnant women to health ,:are:

financing and organization of health services: health manpower;

planning and administration of health services: and research and

informationAbat is still needed in relation to maternal and child

health. Also included is a summary of the proceedings cf the Panel's

,workshop on organization of health services, held February 21 to 22,

-im). The Workshop focused on e description of six organizational

mechanisms fez providing needed alth services to infants, children,

71ilid pregnant women, sources of support for improved existing

organizational mechanisms, and ways of ensuring effective use cf

federal child health funds. (Author/MP)

*.************v*********************************************************

* Reproductions supplied by EDRS are the best that can be made

-* from the original document. ***********************************************************************
BETTER HEALTH

FOR OUR CHILDREN:

A NATIONAL STRATEGY

U S DEPARTMENT OF HEALTH.

EDUCATION A WELFARE

NATIONAL INSTITUTE OF

E DUCAT ION

TPAIS DOCUMENT HAS BEEN REPRODUCED EXACTLY AS RECEIVED FROM

TrE PERSON OR ORGANIZATION ORIGINATING IT POINTS OF VIEW OR OPINIONS

STATED DO NOT NECESSARILY REPRESENT OFFICIAL NATIONAL INSTITUTE OF

EDUCATION POSITION OR POLICY

THE

The Report

Of The Select Panel

For The Promotion

Of Child Health

To The United

States Congress

And The Secretary

Of Health

And Human Services

1981

Volume IV

Background Papers

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Public Hearth Service

Office of the Assistant Secretary for Health

and Surgeon General

DHHS (PHS) Publication No. 79-55071
DEPARTMENT OF HEALTH AND HUMAN SERVICES

OFFICE or Tput SECRETARY

SELECT PANEL FOR THE PROMOTION

OF CHILD MEALTN 1b32 PA STREET. N.W. - RM. 711 wASNINOToN. O.C. 20036

202-63.-4S05

December 2, 1980

Honorable Patricia R. Harris

Secretary

Department of Health and Human Services

Honorable Edward M. Kennedy

Chairman, Subcommittee on Health and Scientific Research

Senate Committee on Labor and Human Resources

Honorable Henry A. Waxman

Chairman, Subcommittee on Health and the Environment

House CommEittee on Interstate and Foreign Commerce

Dear Secretary Harris, Senator Kennedy, and Congressman Waxman:

I am proud to transmit to you the report of the Select Panel

for the Promotion of Child Health, in accordance with Public Law

95-626 which created the Panel.

The 17 members of the Panel and our staff ,t0,0e devoted an

extraordinary amount of time, energy, andwe hopewisdom to our

task. Our commitment has reflected how seriously we have all come

to take the opportunity offered us by the breadth of the mandate

Congress assigned to us. The chance to design the foundations of a

national effort to improve the health of our children has infused

our work with excitement and zest. It has also permitted us to

mobilize the contributions of hundreds of individuals and

organizations throughout the country, engaged in large ways and

small in understanding and serving the health needs of this

country's children and families. The Panel, and the Nation, are

profoundly in their debt.

We were impressed with 'be richness and diversity of available

talent, competence and commitment, reflected-in the accomplishments

of a great variety of public programs and private efforts in

communities throughout the country. We also became starkly aware

of the extent of the unsolved problems that remain.

Our recommendations reflect a hardheaded analysis of serious

unmet needs in child and maternal health, a recognition of past

successes and future opportunities for effectively meeting these

needs, careful consideration of the weaknesses and strengths of

current Federal programs and policies, and a sober and pragmatic

assessment of the capacity of our institutions to provide parents,

professionals, and others working to improve child health with the

Scientific, financial, and organizational support they need.
Honorable Patricia R. Harris

Honorable Edward M. Kennedy

Honorable Henry A. Waxman

Page Two

Volume I of our report presents our major findings and

recommendations.

Volume II contains specific recommendations for improving five

major Federal programs with significant impact on child health:

-- Title V of the Social Security Act

-- The Special Supplemental Food Program for Women, Infants and

Children

P.L. 94-142: The Education for All Handicapped Children Act

-- Medicaid and EPSDT

-- Community Mental Health Centers and Services Systems

Volume III consists of what we believe to be the most

comprehensive compilation of data on child health in the U.S. yet

to be published.

We also submit a collection of background papers, listed at the

end of Volume I, which were prepared for the Panel, and which we

believe will be extremely useful to those who wish to become

familiar in greater depth with selected aspects of the issues we

have analyzed.

Some of our recommendations should be acted on immediately.

Others are designed to be considered and implemented over a period

of years. All of our recommendations are practical, and as

specific and concrete as we have been able to make them.

The goals we set out encompass an extremely broad sweep of

issues. In accordance with our congressional mandate we have

addressed and analyzed issues and policies pertaining to the

physical environment, health behavior, health services organization

and financing, and health research. We did not try to go beyond

these, although we are fully aware that other aspects of the social

environment exercise a powerful influence on health. It is true

that if we could eliminate poverty and racism in this country, if

high quality preschool programs and community supports for families

were more available, if teachers and schools were more effective,

if we had full employment and every young person could look forward

to productive work, our health indicators would improve

significantly. Nevertheless we have not focused on these issues,

both because they are outside the Panel's mandate, and because we

wish to help direct public attention to the extensive opportunities

to improve child health by improving health policies and programs.

4
Honorable Patricia R. Harris

Honorable Edward M. Kennedy

Honorable Henry A. Waxman

Page Three

The Panel has asked me to call your attention to an additional

problem we faced in defining our mandate. As you know, the

legislation that established the Panel asked us to look at the

health of -children and expectant mothers.- Child health is

obviously inseparable from maternal health. The health of the

mother during pregnancy is unquestionably a major determinant of

child health. But as we looked beyond purely physiological factors in child health, we found that our concerns must include fathers as

well as mot!-ers, both in relation to their role in the decision to

conceive a child, and to their continuing role in providing

nurturance, support, protection, and guidance to their children ss

they grow. Not only is the family the primary unit for the

delivery of health services to infants and children, but the family

environment is probably the greatest influence on a

health. We wish to be clear that our use of the term -maternal and

child health,- when we describe and analyze both needs and

interventions, is in no way inconsistent with our conviction that

fathers as well as mothers are central to raising healthy children.

We are grateful for the opportunity you have given us to enzage

in this work, and thank you for the help and support we have

received from you and your associates in the course of our

deliberations. We trust that the value of our efforts will prove

to have justified the investment that the American public has made

is the creation of this report.

I am sure you share with us the conviction that public policy, no matter how well conceived and carried out, can contribute only

modestly to the vigor, grace, and joy we wish to see in our

children's lives. But as our report makes clear, public policy and

programs can mean the crucial difference, especially in the lives

of the most vulnerable of our children.

We hope most profoundly that this report will contribute to

shaping public policy in ways that will help all American families

and communities to protect and promote the health of all of our

nation's children.

Respectfully and sincerely yours,

ESJP, Ea..

Lisbeth Bamberger Schorr

Chairperson
MEMBERS OF THE SELECT PANEL

FOR THE PROMOTION OF CHILD HEALTH

Lisbeth Bamberger Schorr, Chairperson

Washington, D.C.

John C. Mac Queen, M.D., Vice Chairperson

Professor of Pediatrics

University of Iowa

Director, State Services for Crippled Children

Iowa City, Iowa

Jo Anne Brasel, M.D.

Professor of Pediatrics

UCLA School of Medicine

Director, Clinical Research Center

Harbor-UCLA Medical Center

Los Angeles, California

Mitchell I. Ginsberg, L.H.D.

Dean, Columbia University School of Social Work

New York, New York

Frank Hardart, Jr., M.D.

Obstetrician and Gynecologist

New York, New York

Roger C. Herdman, M.D.

Vice President for Administration and Academic Affairs,

Sloan Kettering Memorial Institute

New York, New York

Nicholas Hobbs, Ph.D.

Professor of Psychology and Preventive Medicine

Vanderbilt University

Nashville, Tennessee

George I. Lythcott, M.D.t

Assistant Surgeon General and Administrator

Health Services Administration

Public Health Service, DHHS

Howard Newman, J.D.t

Administrator, Health Care Financing Administration, DHHS

(Mr. Newman served from June 1980 to December 1980; he replaced

Leonard D. Schaeffer who served from March 1979 to June 1980.)

vu
Katherine B. Nuckolls, Ph.D. Professor of Nursing. School of Nursing University of North Carolina Chapel Hill, North Carolina

John Palmer, Ph.D. 't Assistant Secretary for Planning and Evaluation, DHHS

(Dr. Palmer served from November 1979 to December 1980; he

replaced Benjamin W. Heineman, Jr. who served from March 1979 to

November 1979.)

Cesar A. Peralest

Assistant Secretary for Human Development Services, DHHS

(Mr. Perales served from February 1980 to December 1980; he replaced

Blandina Cardenas Ramirez, Ed.D., Commissioner, Administration for

Children, Youth, and Families, Office of Human Development

Services, DHHS, who served from March 1979 to February 1980.)

Julius B. Richmond, M.D. f Assistant Secretary for Health and Surg,:on General of the Public

Health Service, DHHS

Aaron Shirley, M.D. Project Director, Jackson-Hinds Comprehensive Health Center,

Jackson, Mississippi

Jeanne C. Sinkford, D.D.S., Ph.D. Dean. School of Dentisiy Howard University College of Dentistry Washington, D.C.

George Tarjan, M.D. Professor of Psychiatry Director, Division of Mental Retardation Program and Child Psychiatry

Neuropsychiatric Institute, UCLA School of Medicine

Los Angeles, California

Charlotte Wilen

Founding Chairperson, Council on Maternal and Infant Health,

State of Georgia

°Ex Officio voting members

tTbe Panel members who are representatives of the Department of Health and Human Services wish to

commend the Panel as a whole for its thorough information gathering and careful analysis of child health

problems. They believe the Parsers report is an cairns** useful document. However. the specific

prograninzatic and budget recommendations contained in the report have not yet been formally

considered by the Department or by the Executive Office of the President- Thus, participation by

Deportment representatives in the Panel's activities cannot be construed as an Administration

endorsement of the recommendations.
STAFF REPRESENTATIVES FROM THE

DEPARTMENT OF

HEALTH AND HUMAN SERVICES

For the Assistant Secretary for Health and Surgeon General:

Susanne Stoiber

Deputy Assistant Secretary Office of Planning and Evaluation

Juel Janis, Ph.D.

Special Assistant to the Assistant Secretary for Health and Surgeon General

Samuel IC.essisa, M.D.

Special Assistant to the Assistant Secretary for Health and Surgeon General

Patricia Mullen, Dr. P. H. Special Assistant to the Director, Office of Health Information and Health Promotion

For the Assistant Secretary for Planning and Evaluation:

Bonnie Letkoviitz

Director, Division of Health Service= and Resources

For the Administrator, Health Care Financing Administration:

Mary Tierney, M.D. Director, Office of Child Health

For the Assistant Secretary for Human Development Services:

Linda Randolph, M..13. Director, Health Services Branch, Administration for Children, Youth, and Families

Margaret A. Siegel Special Assistant to the Assistant Secretary for Human Development ant

Services

ix
For the Assistant Surgeon General and Administrator. Health Services Administration:

Vince L. Hutchins, M.D. Associate Bureau Director, Office for Maternal and Child Health,

Bureau of Community Health Services

9

x
SELECT PANEL FOR THE PROMOTION OF

CHILD HEALTH

Professional Staff

John A. Butler, Staff Director

Sarah S. Brown, Associate Staff Director Harriette B. Fox, Senior Program Analyst and Project Director, Volume II Mary Grace Kovar, Senior Statistician and Project Director, Volume III

Martha Angle, Senior Editor, Volume I K. C. Cole, Writing Consultant Elizabeth des Cognets, Research Assistant Barbara G. Furst, :Editor, Volume W

_lean= G. Holzgrefe, Consulting Policy Analyst Ruth J. Katz, Associate Program Analyst and Staff Attorney Lorraine V. Klerman, Senior Research Associate

Jessica K. Laufer, Research Associate

Wendy Lazarus, Consulting Policy Analys: Amanda F. MacKenzie, Public Liaison

Denise J. Meny, Demographer Ellen Opper-Weiner, Coordinator, Public Hearings Charlotte L. Tsoucalas, Law Clerk

Vicki Kalmar Weisfeld, Editor, Volumes II and III

Support Staff

Dorothy K. Cavanaugh, Senior Staff Assistant and Office Manager

Isabelle E. Duke, Administrative A...-..ilstant to the Staff Director

David James Dyer, Secretary Constance Johnston, Administrative Assistant to the Panel Chairperson Wendy Klaich, Secretarial Assistant Michelle Miles, Secretary Gail Milner, Administrative Secretary Catherine Waller, Staff Assistant

I xi
PREFACE

The commissioned papers in this collection were pprepared for working groups of the Select Panel for the Promotion of Child Health, to provide

them with background information on major realms of health care and

health policy toward children and pregnant women. In all cases, authors were chosenwhether from acqkdemic, governmental, or private consulting backgroundson the basis of special experience and

knowledge of those issues in mater' 4.1 and child health care which were of

particular interest and concern to the Panel. The authors were instructed to develop papers which not only described

the state of the art in the fields they reviewed, but also set forth policy

issues and options worthy of the Panel's consideration. It was understood

from the outset that their papers would be intended to enrich the

deliberations of the Panel and ensure that all relevant facts and views were

brought to the working groups' attention. The ideas contained in the papers have been used only selectively in formulating the final

recommendations found in volumes I and II of the Panel's report. These papers cannot presume to offer a complete review of every aspect of health and health care for children and pregnant women. But in the

aggregate, they do represent what we would regard as one of the most complete recent reviews of policy issues in the field. As such, they are a

significant element of the Panel's overall contribution to policy

discussions, one which we hope provides a valuable resource for decisionmakers, reseanchenk and students of the health sciences and

public policy. Many of the papers included here also will be reprinted

subsequently, usually in somewhat modified form, in professional journals and other sources.

The organization of the volume needs no special explanation, except for

the final section, which is not a commissioned paper but rather the proceedings of a workshop conducted by the Panel in February of 1980, involving a number of distinguished scholars and decisionmakers. The workshop focused 06 major policy issues in the delivery of maternal and

child health care`

Special thimbles go to Ms. Barbara Furst, who served as editor for the entire volume, working extensively with individual authors to put their papers into final form for publication.
CONTENTS

Letter of Transmittal MI

Members of the Select Panel for the Promotion of Child Health .... iii

Staff Representative* from the Department of Health and Human Services ix

Select Panel for the Promotion of Child Health xi

Preface XIV

Secdose L Healy Protection sad Promotion 1

Environmental Hazards to Children: Assessment and

Options for Amelioration Leon S. Robertson, PhD 3

Nutrition Education and Information

Johanna Dwyer, D.Sc. 31

Nutritional Program Options for Maternal and Child Health: A Summary Barry AL Popkin, Ph.D., John Akin, Ph.D., Mildred Kaufman, M.S., and Maurice MacDonald, Ph.D. 87

Behaviocal Aspects of Maternal and Child Health: Natural Influences and Educational Intervention

Patricia Dolan Mullen, Dr.P.II 127

Section IL Needed Services 189

Background Notes on Various Approaches to Determining Health Services Needed by Infants and Children, Adolescents and Pregnant Women Lisbeth 1L Schorr and Robert J. Haggerty, M.D 191

A Child's Beginning Samuel S. Kessel, M.D., Judith P. Rooks, C.N.M.,

M.P.H., and Irvin AL Cushner, M.D., M.PJL 199

The Health Needs of Infants and Children Under 12

Susan S. Aronson, M.D., F.A.A.P 243.
Adolescents: Health Status and Needed Services

Lorraine V. Klerman, Dr.P.H. with Mary Grace Kovar and Sarah S. Brown 285

Health Care for Chronically Disabled Children and Their Families

Henry T. Ireys, Phi) 321

Section M. Access to Care 355

Children's Health Care: The Myth of Equal Access Diana Duti.-n, Ph.D 357

The Organization of Primary Health and Health-Related

Preventive, PsychosociaL and Support Services for

Children and Pregnant Women Bonnie Lekowitz, M.P.A. and Dennis Andrulis, Ph D 441

Section IV. Financing and Organization of Services 497

Improving the Financing of Health Care for Children and

Pregnant Women Stanley B. Jones 499

The Organization and Financing of Child Health Services: Options for Policy Anne-Marie Foltz, Ph_D 539

The Special Health-Mental Health Needs of Children Larry B. Silver, M.D 571

Section V. Planning and Administration 607

Title V The Maternal and Child Health and Crippled Children's Services Section of the Social Security Act: Problems and Opportunities Lorraine V. Klernian, 609

The Effective Integration of Maternal and Child Health

Concerns into the Generic Health Systems Planning

Process

Mary Ann Holohean, B.A. 643

Federal Administrative Arrangements for Maternal and

Child Health

Karl D. Yordy, M.F.A. 659

Section VI. Health Manpower 707

Child Health Professionals: Supply, Training, and Practice

Peter Budetti, M.D., J.D., Peggy McManus, M.H.S., Suzanne Stew:nark, B.A., and Lauren LeRoy, MCP. 709

New Health Professionals in Child and Maternal Health

Gloria Ruby, MA. 745

Nursing Katherine B. Nuckolls, R.N., Ph.D. 799
Section VIL Research and Information Needs 829

Reflections on Maternal and Child Health Programs

Reviewing the Literature: 1975-80

George A. Si ver, M.D. 831

National Information Needs in Maternal and Child Health

Nicholas Zill and Robin Mount 865

Section VIII_ Select Psinel for the Promotion of Child Health

Workshop on Organization of Health Services,

February 21-22, 1980 887

Summary and Themes

Vicki Weis' feld, M P H 889

1 4
Volume IV

Background Papers
I.
ENVIRONMENTAL HAZARDS

TO CHILDREN:

ASSESSMENT AND OPTIONS

FOR AMELIORATION

by

LEON S. ROBERTSON, Ph.D'

INTRODUCTION

The developmental capacities of children in healthy environments are a

source of great awe to those who have observed a child grow in such

circumstances. To see those capacities crippled or lost in hazardous environments is among the most painful of human experiences. When

control of environmental hazards is beyond society's knowledge or

resources, the results are tragic. When society has the knowledge and

resources but fails to apply them, society's most basic values are in

question. Some environmental hazards to children in the United States are not

well enough understood or are beyond our ability to change at present. However, many are well known and can be changed with available

technical, economic, and social resources. This report is an assessment of principles that can be applied to

minimizHe disease and injury to children. Although specific options for various levels of Government, as well as private, efforts to ameliorate

some of the more common current child health problems are presented, substantial attention is directed to the premises and principles from which

the options are derived. The purpose here is not only to point to the

reduction of current-problems but to note the context in which future

threats to child health can be anticipated and avoided. The environment is much too broad a subject for treatment as a single entity. Some of the environments that bear on child health, such as education, medical care, nurturing, and nutrition are discussed in more detail elsewhere in this volume. The main issue discussed here is the

protection of children from the harmful biological, chemical, and physical agents in their environments. The exposure of children to these agents and

"Center for Heakla Studies. Yale University. New Haven, Conn. Gem

3
the effects of or lack of ameliorative efforts are mainly consequences of

the social environment, including governmental action and inaction.

CURRENT CAUSES OF DEATH AND ILL HEALTH

IN CHILDHOOD

Certainly the most reliable and usually the most important indicators of

the hazards to the health of a population are the deaths attributable to

various causes. Death among children varies substantially with age. In

1975, some 51,000 children died in the first year of life (infants); an

average of about 1,600 died at each year of age from 1 to 14, but this

increased to an average of more than 4,200 at each year of age from 15 to

19. More than 94,000 died before their20th birthday.

The relative magnitude of the contribution of "causes" of these deaths

depends on what catei. :_ies of cause are used and how finely they are

categorized. Table 1 presents the leading categories of causes of death of

children in 1975 according to the NationalCenter for Health Statistics (1).

More than 26,000 infants died, mainly from conditions associated with

birth. Congenital abnormalities from genetic defects or prebirth conditions (toxic conditions or malnutrition in the uterus) killed more than

8,500. Influenza and pneumonia caused more than 2,000 infant deaths in

1975, but this number is much larger in yearsof influenza epidemic.

After age 1, motor vehicle injuries were the leading cause of deaths of

children-4,607 of the deaths from ages 1 to 4 and 8,052 of the deaths of

those 15-19 years of age. About 10,400 of the total motor-vehicle-related

deaths were to vehicle occupants and 2,500 were pedestrians struck by

vehicles. Drownings, fires, and unintentional injuries by firearms and

poison ingestions accounted for 60 percent of the 10,887 unintentional

injuries other than those related to motor vehicles. Deaths from fires in

motor vehicle crashes were usually counted as motor vehicle deaths rather

than fires. Most injury deaths increased substantially after age 15,

including 70 percent of the 2,888 homicides and 90 percent of the 1,764

suicides, but fire deaths were most frequent in children less than 5 years

old_Deaths from malignant neoplasms, numbering 3,906, were also relatively constant from ages 1 to 14, but increased in the late teens. The 2,444

cardiovascular disease deaths were more frequent among infants (33

percent) and 15-19 year olds (29 percent). More than two-thirds of the "all

others" category were infant deaths and almost half of those deaths were

attributed to "symptoms and ill-defined conditions?' A more detailed

presentation of categories of death, disability, and diseases of children,

including trends over time, is included in Volume III of the Select Panel's

rcport. The consideration of current causes ofdeath is as interesting in terms of

what is not on the list as what is on it For example, in 1975 no one less

than 20 years of age died of poliomyelitis, which 25 years before was

among the most feared of "children's" diseases (although adults were

sometimes infected by the virus as well), not only because it killed but

because more often it paralyzed.

4
TULE 1. IAN Taws" of Deets ol Children end Taiga In the Ned $tltae,1975

CNN ol Doh

ka

1-4 $4 10-14 15-19 Tot&

arth injury (dIthlt

hpata, suds)

Unintolonal injuries

a* Md. injuries

Drawing

Are

Roo

Pcisakg

Odw injuries

Congenital ebonite

MAP* neoPlams

*to and mania

Homicide

Cardlovacular dines

Suicide

M others

Total

26,585 10 6 2 1 26,604

1,331 3,611 3,033 3,785 12,035 23,801

(255) (1,321) (1,576) (1,710) (8,052) (12,914)

(40) (743) (501) (690) (1,285) (3,259)

(1351 (611) (36)) (20) (222) (1,554)

(3) (71) (120) (304) (428) (926)

(31) (121) (37) (93) (541) (923)

(873) (738) (439) (768) (1,507) (4,325)

8,582 1,141 424 318 345 10,810

129 711 929 87C 1,259 3,906

2,201 527 177 185 323 3,413

178 317 136 249 2,008 2,888

814 338 232 344 716 2,444

0 0 0 170 1,594 1,764

10, 2,405 1,248 1,383 2,986 18,701

50,525 9,060 6,185 7,294 21,267 91,331

19
Data on disability and shorter term morbidity are less reliable than data on deaths. The death rates from particular causes probably reflect

somewhat the degree of disability from those same causes in cases that disable as well as kill. For instance, motor vehicles account for about half of permanent paralysis (paraplegia, quadriplegia), from injuries similar to

those that cause death (2). However, short-term morbidity in children is dominated by upper respiratory conditions and ear infections that seldom

lead to disability or death (3). Table 2 illustrates this by the numbers of days of restricted activity per 100 persons per year for children under 6

years of age and those 6-16 as reported by the National Health Survey of

1976 (4). It is not possible to say that an exact percentage of childhood death, disability, and short-term morbidity is caused by environmental conditions. If one uses the term in the broad sense to include inadequate social and physical environments and nutrition as well as hardous agents, it should be evident that environment contributes to the vast majority of children's health problems. Early neonatal deaths are associated with low birth weight, teenaged mothers, and minority status of motherseach related to socioeconomic

and medical care environments. Such deaths have declined substantially

in recent years, although the specific degree to which this can be

attributed to improved nutrition. improved medical care, and abortion of high-risk fetuses is not known (5). Injuries are entirely attributable to environmental agents, although

these are augmented by temporary psychological or physiological states, especially those altered by alcohol use. The old notion of "accident proneness" as some long-term psychological or physical trait that causes a

large proportion of injuries has been discredited by competent research

(6). Whatever the causes, the evidence is substantial that unintentional

injuries can largely be prevented by reducing environmental b27-qrds (7) and that even intentional injuries (homicide suicide) can be reduced by changing environments. For instance, in Birmingham, England, the

suicide rate was reduced by removing carbon monoxide from coal gas used for cooking, which people intentionally breathed in a significant

TABLE 2 Days of Restricted Activity Per 100 Persons Per Year

Age

Cause of Restriction

Linder

6 Years

3 -16

Years

Upper respiratory conditions 390 214

Infective and parasitic diseases 217 172

Influenza 208 182

Injuries 70 154

Digestive system 48 40

All others 176 107

Total 1.109 869

6
number of suicide attempts (8). Homicide rates are substantially lower in

countries where handgun ownership is severely limited (9). As more is learned about congenital abnormalities and malignant neoplasms, it will hardly be surprising if more and more environmental

pollutants arc found to affect the genetic material of parents and aspects of development of the unborn fetus in ways that often result in these

conditions_ The chemical drug thalidomide and the rubella virus are well known teratogens (causes of congenital abnormalities). Smoking and

alcohol use by pregnant women are associated with increased risk of congenital abnormalities (10). Among the chemicals and metals that are known to cause abnormalities in animal fetuses, and that cross the

placenta, are aluminum, benzene, cadmium, carbonyl, carbon tetrachlo- ride, chromium compounds, copper, 4-dimethylaminoazobenzene, 2,3- dinitrophenol, fluorine, formaldehyde, lead, malathicn, mercury, nickel, nitrogen oxides, paraquat, parathion, polychlorinated biphenyls, and

selenium (11). Pregnant women may be exposed to one or more of these

chemicals as a part of their work environments or in food, air, or drinking water. The exposure of the fetus to ionizing radiation in the mother's work

and other environments is also an important hazard. The environmental pervasiveness of some of the materials on the above

list is indicated by where they are foundin relatively high concentrations

in some water supplies (aluminum), emitted from some industrial

smokestacks (benzene), emitted from motor vehicle exhausts (lead and nitrogen oxides), in a commonly used garden insect spray (malathion), sprayed on marihuana in Mexico that is subsequently used in the United States (paraquat), in fish from contaminated lakes, and in eggs and beef in

areas where animal food contained polychlorinated biphenyls. It is also

conceivable that men exposed to certain chemicals or metals could

experience alteration of sex chromosomes or transmit the hazardous agents that contribute to congenital anomalies and cancers in their children_ The possibility is being investigated that 2,4,5-T esters, used widely in the Vietnam war as herbicides, have contributed to spontaneous abortions and birth defects of children of veterans exposed to the

chemicals. In the meantime, they have been banned for some applications but are still used for others (12). The accumulation of certain chemicals in fatty tissues means that exposure to very small amounts over sufficient time can result in the buildup of toxic doses. A number of fat-soluble chemicals have been

banned from use by the Environmental Protection Agency (e.g., DDT, aidrin, dieldrin, heptachlor, chlordane, and benzene hexachloride). Nevertheless, these chemicals remain in the environment from past use (and use

in other countries) and human exposure occurs in food and drinking water. Studies of the breast milk of nursing mothers have revealed that the majority have one or more of the chlorinated hydrocarbons in detectable

amounts in their milk. Thus, the fetus may be exposed in utero by passage across the placenta, and the newborn begins life with the high probability

that such chemicals are in its diet, either in breast milk or other foods (13). Chemicals known to be carcinogens (cancer-causing agents) and

teratogens are being found on ground surfaces and in streams and ground water from old chemical waste dumpssome near homes and school

7
playgrounds. Asbestos particles that cause cancer and other equally severe

diseases have been found in the air in schools and other buildings where

asbestos was used in building materials. Respiratory illnesses arc more

frequent in areas with high concentrations of air pollutants such as smoke

and sulfur dioxide (14). In addition to the contribution of environmental factors to death,

disability, and disease, the physical environment is increasingly being

implicated in intellectual and behavioral disabilities traditionally considered peripheral to health and presumed to be caused by inherited

limitations or social conditions. Needleman, et aL, compared school

children withliigh and low accumulations of lead in shed "baby teeth" on

a number of achievement and behavioral factors. The children with high

lead content had significantly lower scores on a number of indicators of

intellectual performance compared to the children with low lead content.

Teacher ratings of behavioral problems (mcluding distractible, not

persistent, dependent, hyperactive, impulsive, frustrated, and unable to

follow simple directions and sequences) increased with higher concentrations of lead in the children's teeth. Statistical controls for 39 variables

from the children's social and medical histories did not explain the

intellectual and behavioral differences in children with high and low

accumulations of lead (15). Lead in concentrations sufficient to produce gross impairment and

death is thought to occur mainly as a result of children ingesting leadbased paint chips and plaster in deteriorated houses and other buildings.

However, most of the children in the Needleman, et aL,study did not have

a his' tory of lead poisoning or live in or near deteriorated buildings. The

lead more likely was in their food, water, or in the air they breathed, and

in dirt on sucked thumbs and under bitten fingernails.

Milk, fruit juices, and other foods stored in soldered cans have been

found to contain lead (16). The extent of the release oflead into water and

air from industry and motor vehicle exhausts has been traced historically

by examination of layers of ice in Greenland where lead concentrations

are found in association with the industrial revolution and, in this century,

with the use of lead as an additive in gasoline. The fact that lead and other

metals and chemicals are rapidly accumulating in such isolated environments illustrates the pervasiveness, magnitude, and international nature of

environmental hazards (17). Ecologic systems are complex and there arc short- and long-term

interactions among what may first appear to be independent groupings of

factors. Ionizing radiation can alter genetic material; persons injured by

mechanic' al or thermal energy and those who are malnourished are more

susceptible to infection by biologic agents; increased survival of populations without commensurate reduction of births will lead to more people

than can be supplied with food in the long run, and population density

contributes to pollution and stress, which may increase susceptibility to

illness in the short run.

The emphasis on the current predominant causes of death to children

nationwide should not detract from an equal emphasis on some very old

problems. Although poor sanitation, which contributed substantially to

deaths historically, has been greatly improved in most areas, it should be

8
noted that such problems remain potentially hazardous in some places_ Members of the Select Panel and consultants were appalled to observe homes of people in poverty in rural Mississippi with no privies (even

outdoors) and no source of potable water in reasonable pro. 'amity to the homes. The actix-ress of some of the hazards noted vary from area to area

depending on socioeconomic and other conditions, and such variation

should be taken into account when priorities for amelioration are

considered.

PRINCIPLES OF DISEASE AND INJURY CONTROL

To attempt to control the diseases and injuries that currently kill and

disable children, one must first believe that they are controllable. Human

history contains virtually every variety of belief about the origins of diseases and injuries and the means, if any, of controlling them. Widespread belief that diseases and injuries were of supernatural origins

too often have been replaced in some circles with the belief that some

diseases and injuries of known origin must be accepted as unfortunate but

inevitable side effects of a free and economically strong society. The control of most of the epidemic diseases that commonly killed and

crippled children and adults ahice for thousands of years contributed

greatly to the disillusion of the notion of the inevitability of widespread

suffering and premature death. This is a very recent phenomenon in the

context of human history. Only within the 20th century does a newborn

infant in the United States have a better than three in four chance of

surviving to his or her 20th birthday. By midcentury the chance of survival to age 20 had increased to 95 percent and has recently continued to

improve (18). Epidemiologists, who study disease and injury patterns in populations, enjoy debating whether the greatly reduced death rates of children in the

last hundred years or so were mainly a result of scientific discovery of disease agents and deliberate measures to control them or mainly a side

benefit of changes in sanitation, water supplies, and other aspects of the environmentchanges that were sometimes undertaken for reasons other

than health. Whatever the answer, the scientific specification of damaging

agents and the changes in environments, certainly deliberate in many

cases (19, 20), that have dramatically reduced the damage of these agents, support the conclusion that deliberate action against the old and new

maladies can be effective.

Two important lessons are to be learned from the history of attempts to

improve public health: (1) It is not necessary to completely understand all of the causes of a particular type of damage before action to ameliorate

the damage can be taken. (2) Attempts at amelioration can have harmful as well as helpful effects, and, therefore, it is as important to study

scientifically the effects of ameliorative efforts as to research the causes of

diseases and injuries. An illustration of effective action based on incomplete information

occurred in 1854 when John Snow discovered that cholera was a waterborne disease by comparing the number of cases that occurred among

9
populations using separate water supplies. The bacterium that does the

damage was not isolated until 1883, but Snow's discovery led to a cleanup

of water supplies in some communities and the 1866 cholera epidemic in

the United States was much less severe than those of 1832 and 1849 (19).

That adverse effects can occur as a result of intervention when a cause

of a disease is known was illustrated in attempts to control bubonic plague

after the plague bacillus was isolated. The bacillus is transmitted to

humans by bites from fleas that usually live in the fur of certain species of

animals, mainly rats. Attempts to control the plague bacillus in some cases

included the flooding of drains with disinfectants that drove flea-carrying

rats into homes, increasing exposure of inhabitants to the bacillus and

resulting in more deaths (21). The nonexistence or extreme rarity in the United States of incidence of

diseases caused by many biological agents that plagued human populations throughout recorded history speaks to the eventual success of

environmental change and scientifically based public health measures.

The challenge today is to conquer the remaining harmful biological agents

and to use the principles learned in past public health successes and

failures to reduce the incidence and severity of disease and injury caused

by nonbiological agents and processes in modern environments.

Effectiv,r. and permanent reduction of a particular disease or injury can

occur when a particular type of cause is identified and when the means to

change that cause are available. The most important set of "causes" of

disease and injury from the point of view of prevention are those

conditions that, if changed, would result in the disease or injury not

occurring. For example, bubonic plague does not occur in the absence of the

plague bacillus, or the fleas, or the flea-carrying animals; or, to take the

current leading cause of death of noninfant children, severe motor vehicle

injuries would not occur if motor vehicles were designed and manufactured with technology that would prevent crash forces from exceeding the

injury tolerance of vehicle occupants and pedestrians (22). Note that the

elimination of the "causes" that increase the probability of motor vehicle

crashes, such as excessive alcohol use, would not eliminate the problem,

although if the causes could be substantially controlled the problem would

be reduced. The physics of crash forces are known and the forces can be

controlled. The factors that contribute to heavy drinking are not well

understood and attempts to control such drinking have not had any

sustained success (23-25).

AMELIORATIVE OPTIONS

Having identified one or more conditions that, if altered, could

eliminate or substantially reduce particular human damage, the next step

is to identify the alternative ways of controlling the conditions. William

Haddon, Jr., has enumerated 10 logical options, originally suggested

mainly to reduce human injury from interaction with various types of

10 e 0 I
energymechanical, thermal, radiation, etc. (26), and recently more

generally applied to all hazardous agents (27). The following is a list of the Haddon options and illustrations of their sometime use or possible application to major hazards to child health: "Prevent the creation of the hazard in the first place." Provide potable water and facilities for sanitary waste disposal

in all dwellings where there are children. Stop the extraction or production of teratogenic and carcino- genic chemicals- - Do not use flammable materials in dwelling units and chil- dren's institutions, furniture (particularly bedding), and clothing- - Do not manufacture handguns. "Reduce the amount of the hazard brought into being." Reduce designed top-speed capability of motor vehicles. Alter transportation of children from cars, trucks, and vans to

less hazardous buses, trains, and commercially scheduled

airplanes.

Raise the age of driver licensure to 18. Reduce temperatures to below scalding levels in water heaters. Reduce the hardness of playground surfaces. Reduce incentives for extraction of hazardous substances such

as depletion allowances in the tax code for newly mined lead_

"Prevent the release of the hazard that already exists." Filter biologic pathogens and teratogenic and carcinogenic

chemicals from drinking water. Impound nuclear and chemical waste. Increase road skid resistance.

Keep all guns locked up at supervised launting and target

ranges_ Use childproof matches and lighters. "Modify the rate or spatial distribution of release of the hazard

from its source."

Increase the use of child restraints and seatbelts in transportation vehicles.

Build or modify storm drains to make them adequate to

prevent the accumulation of water. Use flame retardant materials that do not contain carcinogens, teratogens, or give off toxic fumes in homes, children's

institutions, and vehicles_

Make containers for hot liquids (cups, coffee and tea pots, etc.) with large bottoms and centers of gravity such that likelihood

of spillage is minimized. "Separate, in time or in space, the hazard and that which is to be protected." Quarantine persons with influenza. Build pedestrian overpasses and underpasses on roads, espe- cially in areas with large numbers of children.

II
12

Designate separate roads for travel by cars and by heavier

vehicles,. Build bicycle paths separated from streets and highways. Build playgrounds at a distance from streams or reroute

streams from play areas. Remove children or abusing adults from homes where children

are abusedRestrict target shooting and hunting to unpopulated areas. "Separate the hazard and that which is to be protected by

interposition of a material barrier.' Install air bags in new cars. Install energy-absorbing material around fixed objects on

roadsides where vehicles most commonly leave the road and hit

the objects. Use helmets and energy-absorbing padding when riding motorcycles and bicycles, when skiing, and when playing contact

sports. Use closures on poison containers that cannot be opened by

children.

Confine teratogenic and carcinogenic chemicals and radiation

to closed systems. Use well-insulated fireplace covers. Install fences around swimming pools with gates that cannot be

opened by children. Shim-111.'1y, cover wells, irrigation and

drainage ditches, and culverts in ways that children cannot

enter them_

"Modify basic qualities of the hazard." Use utility and light poles along roadsides that "break away"

when struck by motor vehicles_ Prohibit hard surfaces, sharp points, and edges on interiors of

transportation vehicles and on bicycles, stairs, furniture, toys,

sports equipment, playground equipment, and the lace_

Use soft materials on the front ends of motor vehicles.

Make cigarettes self-extinguishing. Use cribs with gaps between slats too narrow for infants' heads

to be engaged in the slats. Develop emetic coatings for drugs in amounts that have no

effect at prescribed doses but induce vomiting at poisonous

doses.

Make toys and other objects large enough that children cannot

get them lodged in their throats.

Allow only rubber bullets (such as the kind used in some

countries for riot control) to be sold in the calibers used in

handguns-

. "Make that to be protected more resistant to damage from the

hazarcL" Immunize children against the diseases that remain a threat

and for which safe and effective means of immunization are

available-

-Immunize young women against rubella before pregnancy.

2 6
Provide blood clotting factors to children with hemophilia. Install gas tanks and containers for transporting other hazard- ous materials that do not rupture in crashes. Use fluoride in water in amounts that prevent dental decay. -- Require children to perform warmup exercises before vigorous play and athletic competition, and prohibit schools from

allowing those in athletic competition from "playing hurt" or

playing when out of condition. "Counter damage already done by the environmental hazard."

Increase numbers of emergency roadside telephones. Provide for strategically placed quick rescue and emergency medical response. Train the population in special techniques of resuscitation of children.

Install smoke detectors in all dwellings. Install fire extinguishers in all buildings. Restore severed limbs.

"Stabilize, repair, and rehabilitate the object of the damage."

Increase special job training for disabled children as they

approach adulthood. Provide for rehabilitative and cosmetic surgery.

Make burn centers accessible to those needing them. Provide- aid to those whose families cannot support their

therapy or basic needs. Other possibilities have been suggested by Haddon and others (26-31), but these are the most relevant to children. The great value of the Haddon options analysis is that one's attention is forced to the various stages in disease and injury processes where intervention is possible, without becoming bound up in the muddy concepts of multicausal webs that have

led some scientists and others to be excessively cautious in prescriptions

for amelioration.

EFFECTIVENESS AND COSTS

Having specified the frequency and severity or children's diseases and

injuries and the wide range of options for their amelioration, the choice of actions to be taken can be made on the basis of criteria for effectiveness

and costs. Ideary the goal of disease and injury prevention is to reduce the

incidence and severity of human damage to the maximum extent the

resources available. If one knew the effectiveness of each option that

.could be employed as well as the.costs of each option, and had the power of decision, one could allocate resources accordingly. However, effective- ness involves more than whether or not a specific technology works

theoretically or in a laboratory, and resources available may vary

depending on who is providing them and for what purpose. No one entity, including the Federal Government, has unencumbered power to decide how resources are to be allocated. Nevertheless, some principles for estimating effectiveness of preventive strategies are emerging from

13

7
research and can be used to allocate resources available within the range

of power of a given decisionmaker. To be effective, a preventive strategy must do what it is intended to do

and be used correctly. The strategies that have been the most successful

are those that work automatically, without any action on the part of the

person being protected (32, 33), which, in the case of children, usually

includes the child and the family. Susan P. Baker has noted how slow we

have been to learn this principle: [Ms long as we place responsibility for childhood injury prevention

on children and their parents, potential solutions that have not been

implemented in 1979 will still be largely unused in the year 2000, and

easily preventable deaths and injuries will continue to occur. A

comparable error earlier in this century caused thousands of

children to contract typhoid fever, tuberculosis, scarlet fever,

diphtheria, and other milk-bourne diseases, because their protection

had depended on their parents either choosing the right kind of milk

or 'pasteurizing' it themselves. Tragically, these illnesses and deaths

from milk-bourne pathogens continued for decades after it was

known that they could be prevented by requiring all milk to be

pasteurized before being sold to consumers (34).

Estimates of effects of strategies that do not work automaticallyoften

called "active" strategiesmust take into account the extent to which the

strategy will go unused or be misused. Among the factors that are known

to reduce effectiveness because of individual inaction are the frequency

with which the action is necessary, the amount of effort required in the

action, the discomfort or inconvenience entailed in the action, and costs of

the action (33, 34). For example, a car seat or bed especially designed for protection of

small children in crashes, or the correct use of seatbelts at 1 year of age or

older, would reduce the vehicle occupant deaths of children by more than

half. However, despite the fact that the vast majority of people know that

they are safer in seatbelts (35), less than one in five drivers uses them, and

93 percent of children less than 10 years old are unrestrained when

traveling in cars. Even when parent drivers are using seatbelts, more than

75 percent of the child passengers are not restrained (36). A program that

included donation of free infant carriers to parents with newborns and

literature on their use resulted in only a few percentage points increase in

use observed at age 2-4 months (37). Thus, the real effectiveness of child

restraints is only a small fraction of their potential effectiveness because

they must be used frequently and at some effort and inconvenience, as

well as possible discomfort to an active child.

Meanwhile, the automatic means to protect children traveling in motor

vehicles or struck by them that do not involve action, inconvenience, and

discomfort are unavailablevehicle interiors with no protruding knobs or

hard surfaces and edges that increase the severity of injury in crashes;

doors that cannot be opened by a child while. the vehicle is in motion; soft

front ends rather than the hard and sometimes pointed edges aimed at

14
heads of child pedestrians; and air bags that inflate in moderate to severe

frontal crashes.

In the early 1970's, rather than build into their vehicles automatic crash protection that went beyond current Federal standards, manufacturers pushed irritating buzzer "reminders" to use belts, and cars that would not start with belts in stowed positions. Negative public reaction resulted in

the misconception among some Congressmen (38) and others that the

public does not want safety regulation when, in fact, the public's desire for and willingness to pay for automatic protection is high (39). What the public does not want is discomfort or inconvenience. Assessment of choices among options frequently fails to account for the

real, as opposed to theoretical, effectiveness of a measure. For example, the U.S. Department of Transportation report on national highway safety needs claimed that the enactment of laws requiring seatbelt use in motor

vehicles would result in a 40-percent reduction in deaths of vehicle occupants, based on the theoretical effectiveness of belts in moderate to

severe crashes (40). However, it was known at the time that report was written that the most successful belt use law anywherein Australiahad

produced a 20-percent reduction in occupant deaths in urban areas and a

10-percent reduction in rural areas (41). The difference in the theoretical

and actual effectiveness of the law occurred because many people do not use the belts properly, and groups that are more likely to be involved in

crashes, such as teenagers, are less often using belts in compliance with the

law (42). Thus, belt laws have an effect on death reduction and should be

considered as an option until automatic protection is adopted that makes

them no longer necessary. The fault of the Department of Transportation

report was its portrayal of belt laws as an equally effective but less costly

alternative to improved automatic protection in cars, when such laws were

clearly not as effective as the automatic approach. In the case of child

restraint use laws, the first State to enact such a law (Tennessee) included

an exemption that would allow a child riding on the lap of an adult to

travel unrestrained. This law has the potential for increasing childhood

injuries in crashes. In a frontal crash the weight of the adult's body adds to

the force of the child striking interior surfaces. In fact, child restraint use

increased from 8 to 29 percent from before to 2 years after the Tennessee

law was enacted, with little change in on-lap travel. Nevertheless, more

than 70 percent of children are unrestrained despite the law (43). Once a realistic assessment of the effectiveness of available strategies has been made, their costs can be estimated and resources can be

allocated to minimize the consequences of diseases and injuries. Estimation of costs is sometimes as faulty as estimation of effectiveness. Many, if not most, of the -present day hazards to children are results of human

exploitation of certain raw materials or the finished products of that exploitation. Processors of raw materials and manufacturers of finished

products often strongly resist any strategy that would increase their costs and the costs of their products. Even when governmental regulations do

15
not add to costs, processors and manufacturers are often resistant to

regulation because they do not believe that the Government should have

the right to interfere in their businesses(44).

Government and business estimates of the costs of modification of

processes and products to make them less hazardous sometimes differ

many fold. By using accounting methods that amortize certain costs over

different periods than usual or add costs that are unnecessary, as

automobile manufacturers did in estimating costs of increased automatic

crash protection (45), a strategy can be made to look much less costeffective than it actually would be ifimplemented. The authority of the Government to impose regulations to protect

public welfare is embedded in the U.S. Constitution and has been

repeatedly upheld by the courts. However, the point beyond which a

regulation is too costly has not been established. Some economists argue

that costs should not exceed benefits(46), and Government agencies have

experienced increasing pressures in recent years tojustify their actions by

cost-benefit analyses. In addition to the problems of estimating costs and effectiveness of a

given strategy, cost-benefit analysis must cope with the problem of

placing dollar values on the benefits ofreduced disease, injury, disability,

and- death.- Even- when the effectivenessof a strategy in_ reducing a hazard

is known precisely and the costs of the strategy are reasonably assessed,

the benefit-cost ratio (or more appropriate differences between costs and

benefits) can be made to look unattractive by reducing the estimated

dollar value of the benefits. Whether a strategy is considered costbeneficial then becomes a matter ofhow much a life (or an eye or an arm)

is worth in dollars.

Economists can come up with dollar values of life and limb by making

various assumptions about foregone earnings, costs of maintaining

families when breadwinners are killed, disabled, or unable to work for a

time and the like (47). However, these calculations do not deal adequately

with the basic underlying issue of human values. The assumption that

costs should not exceed benefits is a value judgment that assumes that the

American people are unwilling to contribute more to reducing disease and

injury than the diseased and injured would return to the economy. If that

value judgment were uniformly applied, no public funds would be

expended for medical care of children with congenital abnormalities

serious enough that their economic productivity, if any, would produce no

net return to the economy. Clearly, the fact that public moneys are expended to care for those

children who will not provide an economic return is evidence that society

does not demand that the measurable benefits of such care exceed the

costs, at least when the persons affected are readily identifiable. However,

in the case of most environmental hazards, the affected lives are called

"statistical lives" by economistsmeaning that the individuals who will

be affected are not easily identified. Apparently, their lack ofidentifiability rather than their intrinsic value makes these lives more conducive to

benefit-cost analyses and decisions. Their lack of identifiability perhaps

also results in a disproportionate share of resources being allocated to

16 fi
attempting to treat the damage once it has been done, and the person

affected is thus identified, rather than to preventing the hazard. When the public understands the application of benefit-cost analysis in specific cases of identifiable consequences, it is appalled. For example, in one of the cases involving a teenager badly burned because of an easily damaged gas tank in a Ford Pinto, the jury was informed that the

company knew of the fire hazard from leaking gasoline in Pinto crash tests and had rejected the use of available methods to prevent it on the basis of a benefit-cost analysis. The company had decided that an extra cost of about $10 per car would not equal the benefits in reduced burn injuries and deaths that would be realized (48). The jury, aware of this evidence, awarded the burned plaintiff $128.5 million, which was later reduced to $6 million.

In less well-known cases, governments have arided to the costs of

amelioration of environmental hazards by requiring expensive economic

impact statements and benefit-cost analyses for each decision to be made

rather than applying general principles. For example, more than one-third of motor vehicle fatalities and severe injuries occur when vehicles leave the road and strike rigid objectstrees, utility poles, bridge abutments, and the likewhich are often only a few inches or feet from roadsides; this situation would not be tolerated if the objects were on airport runways. Removing these objects, changing those that can be modified to break away on impact, or placing energy-absorbing materials between them and the road would greatly reduce the human damage. State

highway departments have made some such changes, partly in response to the availability of Federal funds for that purpose. However, known

principles for selecting sites for ameliorative action have not been widely applied. It has been established by research that severe fixed-object crashes are many times more likely within 500 feet of curves greater than

six degrees, on downhill grades of greater than 2 percent, on nonlocal roads, and that such sites are only a small proportion of such roads (49). Rather than using that information, highway departments have expended

substantial SUMS for roadside surveys of all fixed objects and for cost-benefit analysis of fixing each site that is considered. There is, of course, an upper limit on the resources that can be used to

prevent or treat disease and injury without severely affecting other human wants and needs. Some economists and others argue that consumers

decide by their choices in the marketplace what they are willing to pay for

the amount of risk they are willing to take, and that the Government role

should be limited to informing consumers of the risks associated with

particular products (46). This assumes that those who make the purchases are the same individuals who are taking the risk and that the marketplace will always provide the less hazardous processes and products so that consumers have the choice. Neither of these assumptions is valid. People who consume teratogens or carcinogens in air and water are

often not the same people who purchase the products of the processes that contaminated the air and water. Children especially are not usually party

to decisions about purchase of much of their food (certainly not when in

utero or infancy), their cribs, their medicines, or the vehicles in which they

17
will ride, even if they could be taught the hazards involved. One study of

people in car crashes estimates that 80 percent of the people of all ages

injured as drivers and passengers were not the original purchasers (50),

and certainly the pedestrians struck by motor vehicles had no say in the

hardness or shape of the vehicle surfaces that determined the severity of

their injuries. Nor has the marketplace always responded with less hazardous

processes and products even in the face of known consumer demand. For

example, air bags that reduce severe and fatal injuries in frontal car

crashes by 40 percent were developed and tested in the 1960's and were

available for production in the early 1970's. Edward N. Cole, the president

of General Motors at the time, promised them on all 1975 General Motors

cars. However, they were only offered on a few of the most expensive

Cadillacs, Oldsmobiles, and Buicks in 1974-76 with virtually no advertising of their availability. Consumers attempting to purchase them experienced substantial dealer resistance and delays in delivery (51). Despite

this, about 10,000 air-bag-equipped cars were sold to the public (1,750 had

been sold to private fleets previously), mostly in 1974. Following Cole's

retirement in that year, air-bag production was phased out.

One possible reason for Cole's interest in the air bag was marketing

research by General Motors that indicated that consumer demand for the

air bag would be high. That research done in 1971 did not come to public

light until 1979. New car buyers were shown air bags and automatic belts

in cars, film showing air bags and belts in crash tests, and favorable and

adverse publicity on air bags. The study states that

[C]onsumers are overwhelmingly in favor of some kind of occupant

restraint system [are] not scared off the Air Cushion concept and

that the Air Cushion Restraint concept is a viable one to the

consumers.. .. After seeing prices quoted, which were higher than

those which respondents expected, and had a slight dampening

effectthe Air Cushion still maintained half of all preference

votes.... (emphasis theirs) (52).

Why Cole's successors ignored that study and phased out the air bag is

not known publicly but it was most certainly not because of a lack of

consumer demand for increased crash protection. General Motors

claimed that delays in offering air bags were because of an alleged

potential hazard to out-of-position children. However, examination of

children that were standing in front of the dash or sitting on midseat arm

rests when air bags deployed in crashes revealed far less injury than would

be expected in crashes ofsimilar severity without air bags. General Motors

subsequently announced that the problems of out-of-position children had

been solved, but later announced that air bags would not be offered soon.

Despite the evidence that those who process or produce hazardous

products do not always act in their own best economic interests, there is

merit to the argument of many economists that Government has not

considered adequately the use of taxes, fees, cz other economic incentives

for use of less hazardous processes and prodo-cts as an alternative or

supplement to direct regulation (53). For exa.r..ple, the Government has

required vehicles to be able to operate on unleaded gasoline but some

motorists use leaded gasoline in their new cars, destroying antipollution

114 4.> 9

"vs
equipment and continuing to emit lead from their exhausts, because unleaded gasoline costs more than leaded gasoline. Also, the depletion

allowance in the tax code encourages the use of newly mined lead and other toxic materials rather than their recovery and reuse in ways that would not be as harmful as their release as waste in the environment.

Direct regulation of processes and products that engage large numbers of companies or local governments (as in waste disposal) often meets with the same kind of response as the regulation of individual behavior discussed earlier. Companies and local governments do not like to be

inconvenienced any more than do individuals. In many cases it may be more effective to charge a tax or fee for disposal of wastes. Such fees would be prorated so that the economic incentive would be to minimize use and disposal of hazardous materials rather than to attempt to direct each company or government as to when, where, and how hazardous wastes are to be handled.

To the extent that the costs of alternatives to waste disposal vary greatly

among waste dischargers, a fee or tax system theoretically would be more efficient. Those whose costs would be less to treat or reuse wastes in

nonhazardous ways would do so rather than pay the fee. Those whose costs would be very high would choose to pay the fee and continue to

pollute but, if the fees were set appropriately, there would be less total pollution at much less cost than if everyone had to meet the same

standard. The cost of governmental monitoring of hazards would be the

same in a direct regulation or an incentive system (53). Whatever the strategy adopted to minimize hazards, reduce costs, or

both, the principle that the consequences should be studied to ensure not

only that the strategy is working as planned, but that no unanticipated

harmful "side effects" are occurring, bears repeating. A direct regulatory

activity or an incentive system that sounds workable in a Congres-ional hearing will not necessarily be so in practice (54).

MAJOR LAWS AND PROGRAMS

Government is the primary social mechanism for reducing hazards that are inadequately percc.ived or not acted on by the public and that are unprofitable for action by involved companies. without governmental standards or incentives. Those who object to the Government's role in

such matters often do so on the grounds that it abridges human freedoms, at least in terms of use of resources, and takes responsibility for matters

that people should look after themselves. In fact, if people had to be

knowledgeable about every potential environmental hazard and had to take action on each one, they would have little or no freedom to do

anything else; and, as noted previously, freedom of choice is often not

available, especially for children. Processors of raw materials, and designers and producers of products, could avoid some regulations and, in some cases, some long-run costs in

recalls, litigation, and liability awards, if they would pay greater

immediate attention to the possible hazardous ways in which materials and products will be used and eventually discarded. Often at no

19

33
additional cost, it is just as easy to make a product soft rather than hard;

blunted or rounded rather than sharp; nonflammable or slow-burning

rather than quick-blazing; chemically inert rather than toxic; or incapable

of being swallowed by a child. Where modification of a process or product

does involve costs that would put a company at a competitive disadvantage, governmental regulation should be welcome to the conscientious

executive whose relative advantage would be the same if all similar

businesses had to meet the same regulations and who could sleep well at

night in the knowledge that danger had been reduced or avoided.

To many, these statements may be self-evident, but in an era of antiGovernment and antiregulation hysteria in some circles, their restatement

is in order. Part of the problem is the misperception that Government is

ineffective. Some of the successes of Government in reducing hazards to

health are not widely known; the mention of a few should illustrate the

point. Sanitation standards and immunization programs of Federal, State,

and local governments virtually eliminated the harm done by many

biological agents and greatly reduced others. Poisonings of children by

drugs and household products regulated by the Consumer Product Safety

Commission have decreased 25-35 percent in association with regulation,

compared to a 20-percent increase in ingestions of and poisonings by an

unregulated group of products (55). A reduction of 40 percent in cribrelated injuries accompanied the Commission's programs and regulations

regarding children's cribs (56). Children's falls from windows in multilevel

dwellings decreased by 50 percent when New York City required

landlords to install devices on windows that make it difficult for young

children to crawl out (57). State laws requiring installation ofseatbelts in

cars reduced occupant deaths 10-20 percent in the early 1960's, and the

initial Federal Motor Vehicle Safety Standards for cars reduced occupant

deaths an additional 23 percent (58) and all severe occupant injuries by

25-30 percent in the late 1960's and the 1970's (59). Unfortunately, those

standards have had no effect on pedestrian deaths (58). Part ofthe lack of

knowledge of the effectiveness of recent governmental health and safety

laws and regulations is that they have been pilau d in over time and when

enough time has passed, the outcomes have not been evaluated on the

assumption that everything is all right because a law was passed and

regulations were promulgated.. The effects of laws directed to the control of teratogens or carcinogens

are not easily realized because of the difficulty of identifying the agents

and their routes of exposure. The consequences of teratogens may not be

seen for months or years and, in the case of carcinogens, the delay

between exposures and manifestations of the disease can be many years

complicating both the specification of exposure in causation or lack of

exposure in amelioration. The need to rely on mutagen and animal studies

leads to major controversies regarding their applicability to human

populations. Numerous Federal laws have been enacted with the aim of reducing

environmental hazards, particularly within the past 15 years. The laws

vary widely in the specificity of the hazards to be reduced, the methods to

be used to reduce them, limits on the authority of the implementing

agencies, and degree of consideration of costs (60). Some of the major

20

3 .1
laws ainwzd at environmental hazards and the agencies authorized to

impler. are listed in table 3. In a survey of 17 agencies

under. r reparation of this report, a question was asked regarding

need 4.:lista t on None of the agencies claimed to need new

authori com6at the hazards in its purview. Altho;gh the overall thrust of the cumulative legislation is ambitious, if not exhaustive, the inherent lack of a priority scheme in the piecemeal approach leads again to the question of whether resources are being

optimally or even reasonably allocated according to the contribution of given hazards to disease and injury. The major laws directed at pollution of air, water, and land contain a mixture of goalsreduction of hazards to health, protection of flora and fauna, and aesthetics. Brown haze over cities, brown rivers, and cluttered landscapes are evident to all but the most insensitive observers. However, the degree to which pollution is observable is not necessarily indicative of its hazard to human, plant, or animal health. Some of the most lethal substances are colorless, odorless,

and tasteless (61 ). Part of the criticism of the laws in question is that too many resources are being expended to achieve aesthetically pristine air, water, and land at the relative neglect of health hazards. For example, the

TABLE 3. Federal Laws Directed at Maim Environments, Hazards and Federal Agencies Pelaterny Aulloodzed to Implement Thorn

Law

Clean Air

Water Pollution

Resource Conservation and Recovery

Ineectickles, Fungicides. and Rodenticidss

Toxic Substances Control

Motor Vehicle Safety

Highway Safety

Hezardous Materials Transportation Food. Drugs. and Cosmetics

Occupational Health and Safety

Consumer Product Safety and specific braes regarding hazardous substances, poison packaging.

fkorantabie fabrics, and refrigerators Public Hearth and Welfare. various

provisions for safe drinldng water programs, communicable disease and immunization programs, rodent control, lead-base paint poisoning and the like

Enviroranentod Protection Agency Envinximental Protection Agency Envirtxtmental Protection Agency Environmental Protection Agency

Environmental Protection Agency National Highway Traffic Safety Administration

National Highway Traffic Safety Administration and the Federal

Highway Administration Materials Transportation Bureau Food and Drug Administration and Department of Agriculture (food) Occupational Safety and Health Administration

Consumer Product Safety Commission

Certain duties assigned to some of

the above agencies and the Department of Health. Education. and Welfare (recently changed to Department of Health and Human Services) and the Department of Housing and Urban Deveioprnent (lead)

21
cost of making rivers odorless, swimmable. or supportive of marine life in

certain areas is very high (54). Achieving these more easily observable

goals may be politically appealing but it does not guarantee that drinking

water taken from these sources will be safe even after currently used

treatment methods are applied. Teratogenic, carcinogenic, and otherwise hazardous substances may remain in the water or may be dumped in

places where human exposure is increased.

The progression of new legislation and amendments to the old reflects

some realization of such problems. Title II of the Resource Conservation

and Recovery Act of 1976 specifically states that the Clean Air Act and

the Wafer Pollution Control Act resulted in increases in solid wastes

dumped on land. The Safe Drinking Water Amendments of 1977 direct

the Environmental Protection Agency to conduct studies of chemical

interactions and substances in drinking water that are suspected teratogens and carcinogens. A number of interagency groups have been formed in an attempt to

establish priorities, clarify policies, and coordinate regulatory activities

the Presidential Regulatory Council, the Interagency Regulatory Liaison

Group, the Toxic Substances Strategy Committee, and the National

Toxicology Program. The Presidential Regulatory Council recently issued

some important policy statements regarding carcinogens: (1) Highest priority- should be given to substances that pose higher risk and to which

people are most likely to be exposed. (2) Special populations such as

children should be considered. (3) Regulations should include estimates of

reduction of risk of cancers and increases or decreases in other types of

risks that would result from the regulations. The Council's report also

seeks to clarify some important facts regarding cancers. A substance that

causes cancer in animals or is mutagenic is very likely to cause cancer in

humans even though the route or amount of exposure is different. Among

known carcinogens, it has not been possible to establish that there are

absolutely safe levels of exposure. However, only 7 percent of some 7,000

substances tested were found to be carcinogenic even in large doses, which

indicates that the common view that carcinogens are too many to be

controlled is not justified by the facts (62). Substantial evidence exists that children have not been given adequate

special consideration in efforts to reduce environmental hazards. This lack

has been noted by Dorothy Kane: "Not much is known about the quality

of air at or near ground level because devices used to measure air

concentrations are rarely placed at the height of a young person's face. However, gravity forces many of the heavier and often more toxic

particles to the ground (or floor)."(63) Also, because of the breathing rates

of children at rest and the greater activity of children, "under comparable

exposure, children apparently inhale two to three times much of a

pollutant per unit of body weight as do adults."(64) Claims have been made that known carcinogens such as chlorinated

hydrocarbons (which have been found in breast milk) and certain

pesticides can be removed from drinking water by activated charcoal

filters for about 7 cents per month per person served (65). If that is true,

and even if the cost were higher, governments with jurisdictions over the

22
water supplies surely would have the support of their constituents in

adopting the use of such filtration systems. If a tolerance level of exposure to carcinogens (and teratogens) cannot be established, the notion of tolerance levels for such substances used by various agencies in allowing the substances in food, drinking water, or air

is not justified. The goal should be to eliminate exposure to teratogens and

carcinogens in these media as well as hazards to reproductive tissue and

the fetus in workplaces, and the means of reaching the goal should be

under constant review. One recent report on food contaminants states that

"there is no requirement for review of an action level once it is established. Thus. FDA (Food and Drug Administration) is under no pressure to

actively seek new data to verify the appropriateness of an existing action

level."(66) For years Allen V. Kneese and colleagues have been advocating that "materials balance" accounting would reveal the extent of hazardous materials in the environment and have suggested points at which the most effective and economically efficient controls could be applied (53, 67-68). Such an accounting would include the amounts of materials extracted that are hazardous or made hazardous by their processing, the flow of the materials through the economy, the amount discharged into air, water, and on land at each stage of the process from extraction to final use, and

disposition when no longer used. Some such accounting is being done; for example. a report on arsenic was recently released (69). However, that report noted that the information is incomplete partly because there is only one domestic producer. Present law does not require reporting if there are three or fewer producers of a substance, supposedly to protect companies from competitors who might gain advantage from such proprietary information. The tracing of hazardous materials in the economy by the agencies responsible should be accelerated, and the highest priority should be given to materials that are

the most likely to be teratogenic, carcinogenic, or otherwise toxic to

children. No company extracting, processing, or selling the processed material should be exempt from reportng the fate of such materials in its

hands.

State and Federal legislators should review lists of materials that are

teratogenic (//), carcinogenic (70), or otherwise hazardous to children

(71), and systematically review the tax laws for points at which changes would provide incentives for reduced usage and disincentives for

increased usage of such materials. Similarly, the laws regarding clean air. water pollution, waste disposal, and the like, should be reviewed for points at which economic incentives and disincentives could be used to reduce

hazards. Any changes in the laws should provide for followup assessment of the consequences to ensure that anticipated effects have occurred and

that unanticipated adverse consequences have not occurred. Emphasis on the neglect of problems that are newly found, if not new, should not divert attention from some old problems that have not been

completely solved. The 1970 Census found that one in five dwelling units was lacking in some plumbing facilities (72). In an affluent society, no

child should have to live in a home without potable water or sanitary

23
waste disposal facilities. Owners of dwelling units housing children without such facilities should be required to install them. Where they

cannot afford to do so, Government aid should be provided for that

purpose, and no family should be denied rental of or be evicted from a

dwelling unit by landlords to avoid the requirement. The hard surfaces, knobs, and sharp or pointed edges on the interiors

and exteriors of motor vehicles, and on bicycles, stairs, furniture, toys.

sports equipment, playground equipment, playground surfaces, and the

like, are common sources of injury to children (73). The agencies that

have been designated to regulate the relevant products or environments

(such as the National Highway Traffic Safety Administration, the

Consumer Product Safety Commission, and Federal, State, and local

recreation agencies) should consider adoption of child impact performance standards for surfaces that are frequently involved in injury to

children. Such standards should be based on the best estimates of a

margin of safety in managing the forces involved in child impacts and on

knowledge of C degree to which the severity of the impacts can be

reduced by modik jing relevant surfaces. Persons less than 18 years of age are prohibited by law from signing

contracts, voting, and playing pinball machines; yet persons considered

too immature for such activities are licensed to operate vehicles that so

commonly kill and maim. Drivers less then 18 years old are involved in

more than 4,000 fatal motor vehicle crashes each year. Driver education

courses in high schools have been found to contribute substantially to that

toll because 16-17-year-olds who take driver education in high school are

licensed to drive earlier than they would be otherwise, but high school

driver education does not reduce fatal crashes per licensed driver (74). In

Connecticut, when driver education was eliminated from nine school

districts, 75 percent of thou. students who would have been licensed at 16

or 17 after taking the high school course did not obtain licenses until they

were 18 or older. There were substantial reductions in severe crash

involvement of 16-17-year-olds per population of that age from those

districts compared to little change in districts that retained the course (75).

If the age of licensure were raised to 18, high school driver education

would have no adverse effect. However, without an 18-year-old licensing

age, Federal, State, and local taxpayers are being charged for a school

program that increases the risk that they and their children will be injured

by a 16-17-year-old driver. State Governments should consider raising the

age of licensure to 18, and the Federal Government should consider

prohibition of use of Federal funds for driver education programs in

States where drivers are licensed before their 18th birthday. The age of maturity is not the only factor associated with risk to

children's health that is inconsistenly treated in law. Alcohol and cigarette

use contributes to damage to the human fetus, cancer, and to various

types of injuries. Alcohol is frequently involved in almost every type of

injury, including homicide and suicide, and smoking is associated with

fires that often kill or severely disable and disfigure children. Substantial proportions of young people who use these substances will become

addicted to them. Government prohibits advertising of cigarettes and

distilled spirits on television. Yet children are commonly exposed to

24
advertising of alcohol and tobacco in magazines, newspapers, and on

billboards. In such advertising, alcohol use and smoking are pictured as glamorous and sophisticated activities that are an integral part of the good

life. The Federal and State Governments should consider the prohibition

of advertising of alcohol and tobacco in media that are distributed in their

jurisdictions. Laws uniformly prohibit homicide but only a few jurisdictions have

significant laws to reduce the use and/or lethality of the weapons used to

kill. The most commonly used weapons in homicides are handguns; they are used often in suicides (9) and are a frequent source of unintentional

injury (table 1). Many of the intentional acts are committed in moments of temporary anger or depression and will not be repeated. The lethality of

the act is as much or more a result of the lethality of the weapon as it is the

intent of the user. As identified in the options analysis earlier in this paper, a number of ways can be employed at various levels of Government to

reduce the availability and use of handguns and the lethality of the

ammunition.

The kinetic energy of motor vehicles and their occupants increases exponentially as speeds increase. High speeds increase both the likelihood of crashes and the severity of injuries in crashes. The 55-mile-per-hour speed limit, adopted in 1974 to save fuel rather than for increased safety. resulted in about 5,000 total fewer deaths annually (76), and deaths of children were reduced proportionally (from 15,757 in 1973 to 12,914 in

1975, partly due to the speed limit and partly to vehicle safety standards). However, vehicles have long been and continue to be manufactured with

speed capabilities far in excess of even the limits before the 55-mile-per- hour law. Not surprisingly, vehicles capable of such speeds are often

driven at speeds above the legal limit. A policy more logically consistent and effective than speed-law enforcement would prohibit the manufacture of vehicles (other than emergency vehicles) that are capable of speeds above 60 miles per hour under standardized test conditions on level road

surfaces. Such a standard would not only reduce death and injuries, but would conserve fuel as well.

It is unlikely that information available to legislators, the regulatory agencies, the regulated industries, or other groups will ever be so precise

that the exact change in risk that would result from a change in law or

regulations would be known in advance. This is particularly true when

there are multiple sources of a hazardous substance such as lead (77). The process of establishing standards for environmental risks will continue to

be a political process in which parties with various interests will support or oppose particular actions based on less than perfect information. Nevertheless, as noted in the earlier discussion of current causes of deaths,

diseases, and injuries to children, the environmental conditions that lead

to children's deaths and disabilities are becoming increasingly well known. That information, coupled with the earlier stated principles of the type of actions that are likely to be effective and publicly acceptable, gives

substantial guidance to governmental and private attempts to reduce

environmental hazards.

The adequacy of health and safety laws depends as much on the

continued support of the legislators and Government executives when the

25
laws are enforced as it does on the content of the laws. Laws are

necessarily vague in some respects. It is not possible for legislators and

their staffs to be expert in every facet of the issues they must legislate. The

wisdom of a law such as the National Traffic and Motor Vehicle Safety

Act of 1966 is that it refrains from specifying that particular equipment

must be used on motor vehicles and directs the Secretary of Transportation to set performance standards to reduce death and injury. For

example, a performance standard for brakes would specify that a car must

stop within a certain distance when brakes are applied at a certain speed

but would not specify the type of brakes. Thus, the manufacturers are free

to meet the standards using a variety of technologies, including new and

perhaps less costly or more efficient technologies as they become

available, without the necessity of changing the law. Substantial controversy remains over whether or not standards are too stringent or are ahead

of effective and efficient technology, but the Congress and the public arc

usually better served when the Congress provides for performance rather

than design or equipment standards. The problem with Federal agencies authorized to implement legislation

is usually not that they are too aggressive in health and safety regulation;

often they have been less aggressive than the situation warranted. One

critic has claimed that 23 of the 27 cases where carcinogens were regulated

by the Federal Government from 1967 to 1977 resulted from petition or

lawsuit by public interest groups, labor unions, environmental groups, and

the like, rather than from within the relevant agencies (78).

Part of the governmental health and safety agencies' slowness to act is

the fear of reversal of regulations, budget cuts, and other sanctions from

legislators and elected executives when constituents complain that

regulations are restricting their freedoms, hurting their businesses, causing

unemployment, or causing greater energy use. There are occasions when

some such effects occur but the arguments are more often used when other

factorslack of consideration of freedom lost by the dead and disabled,

mismanagement, recession, failure to conserve energyare the real issues.

In its recent action to weaken requirements to increase automatic crash

protection in cars by allowing purchasers freedom to choose nonautomatic restraint systems, the Congress failed to consider the research that

found that 80 percent of the car occupants killed are not party to the

choice of original equipment (50). Barry Commoner has observed that

unemployment is considered a natural consequence of innovations that

make industries obsolete but is viewed as more of an evil when a health or

safety regulation results in a change that puts some people out of work.

Much of such unemployment is temporary and the new jobs created in

industries providing pollution control equipment, safety innovations, etc..

are seldom considered in the argument The steel industry has argued that pollution abatement carried too great

a cost in energy but the Environmental Protection Agency (EPA) found

that the estimates were "greatly exaggerated because they are based on the

most energy-intensive control techniques and do not consider the

recycling of energy now wasted in heat and combustible gases."( 79)

Another EPA study found that a 15-percent recovery of solid wastes and

use of burned solid wastes as a source of energy would result in a net

26 40
reduction in a number of significant environmental pollutants and energy

conservation as well (80). For decades, the automobile industry carried on

a horsepower race, with its enormous waste of fuel (in addition to the human damage both from high speeds and emissions of pollutants), and now argues against pollution standards because of slightly lower gaL mileage associated with antipollution technology. The generation and

release of energy most often increases hazards; the conservation of energy

in most respects is likely lo increase the health and safety of our children

and ourselves. Too often facts such as these are ignored in the heat of debate on health, economics, and energy. Recent years have seen substantial movement toward the reduction of environmental hazards to children as more has been learned about those

hazards. This paper has indicated many additional options for further reductions of known hazards. However, the achievement of those

reductions will require increasing vigilance by those concerned for children's health and safety as economic and energy crises deflect attention and resources from health and safety issues.

SUMMARY

Most childhood deaths are environmental in origin and most environ- ments are subject to ameliorative changes. Inadequate socioeconomic and medical environments that affect neonatal deaths; mechanical, thermal and other forms of energy that kill by injury; teratogens and carcinogens

that cause birth defects and malignant neoplasms all can be controlled. The options available to prevent harmful interactions of children with

environmental hazards range widely, including banning use of certain materials or products, modifying the materials or products in ways that make them less hA7-ardous, separating children in time or space from

hazardous agents, placing nonhazardous material between children and

hazardous agents, and strengthening children's resistance to some agents. Complete understanding of all of the causes of an injury or disease is not necessary for amelioration. Many hazardous agents can be removed

or their harmful effects reduced by available options without understanding of the entire harmful proccs. Ameliorative attempts can sometimes be ineffective or harmful and must be studied as vigorously as the causes of the disease or injury in

question. The effectiveness of an ameliorative strategy must be judged not only on its theoretical or laboratory effectiveness but on its effectiveness

in use. Strategies that work automatically with no action required by the child or family are usually more effective in practice than strategies

requiring individual actions. Ameliorative strategies that require frequent, inconvenient, or uncomfortable actions of people are not only less often

effective but sometimes create backlash against ameliorative efforts generally. Minimizing costs of ameliorative efforts is desirable but uncertainty in

assessing costs and expressing the value of life and limb in dollar terms, as

is done in costbenefit analyses, can lead to inhumane decisions. Although individuals, private companies, and governments do not always

27
act in ways that minimize their costs, economic incentives such as taxes or

fees may be more effective and efficient than direct regulation when

banning a hazard is unfeasible. Children have not been given adequate special consideration in efforts

to reduce environmental hazards. The special characteristics of children

that make their exposures different from adults, and the environmental

sources of those hazards, must be considered in Government and private

health and safety programs if the consequences of the hazards are to be

reduced.

Arguments that governmental programs and regulations do not work or

are incompatible with personal freedoms or economic and energy goals

are frequently based on false premises or inadequate information.

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Fatal Roadside Object Crashes." Traffic Engineering 46: 24-30. 1976.

29
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.'-u -s a oq iqno qi "D at qq doj ay ,po.mfu uV Lioiwiodx ...sCpm (os)
NUTRITION EDUCATION AND

INFORMATION

by

JOHANNA DV/YF.R, D.Sc.'

THE NEED FOR NUTRITION EDUCATION

New Faces of Malnutrition in American Children Today2

New types of malnutrition are evident in American children today. Inadequate diet is less of a problem than it used to be, while inappropriate diet and malnutrition secondary to disease continue to be troublesome (1, 2).Starvation, undernutrition, and most of the classical vitamin and mineral deficiencies (with the exception of iron deficiency anemia and

insufficient intake of fluoride) are less common among children today

than they were in the past. When they do occur, they appear in milder

forms than previously. They are most common among children from lowincome minority groups (3), among other families (especially if poverty is coupled with ;low social or educational status that further predisposes

them to dietary inadequacy), and among children who suffer from

diseases that have secondary effects on nutritional status (especially when

these diseases have not been diagnosed or adequately treated). In general, infants, very young preschool children, and adolescents during the growth

spurt are at greater risk than other children (4-6). In contrast the prevalence of nutritional problems related to overnutrition, imbalances, and excesses of food intake appears to be on the upswing

(7, 8). Dietary imbalances with respect to total fat, saturated fat, cholesterol, sodium, and energy are widespread in most income and ethnic groups in mid- and later childhood and adolescence, and sometimes even

in the preschtol years. Excessive energy intakes coupled with low-energy outputs frequently result in obesity. Also, adequate or even excessive energy intakes are frequently combined with inadequate intakes of protective nutrients, such as iron and vitamins A and C, among some

'Associate Professor. Department of Medicine and Community Heakh. and Director, Frances Stern

Nutrition Center. Tufts-New England Modica' Center, Boston, Mass.

2For a more detailed discussion of maternal and child nutrition status in the United States, roe Barry M.

poplin in this volume.

31
children. Less frequently, toxicities occur as a result of excessive doses of

vitamin or mineral supplements given to young infants or taken by

adolescents.

Other dietary problems are now recognized to exist in addition to those

related to inadequate, irnbalanced, or excessive intakes, and these

problems increase risks of certain diseases or conditions (9). Such

phenomena include allergies, intolerances and hypersensitivities, food

intoxication, feeding problems, emotional and behavioral problems

related to food and eating, and (among adolescents) alcohol abuse.

Furthermore, dietary insufficiency, imbalance, and excess along with

other hereditary and environmental factors are associated with such

conditions as certain types of poor mental development, obesity, dental

caries, and some of the chronic degenerative diseases such as atherosclerosis and hypertension. These various risk factors are active even in

childhood in influencing the likelihood of developing disease. Parents may

not know or may fail to follow health promotion and disease prevention

strategies that involve diet or other measures(8).

Our success in keeping some children alive who formerly died of

prematurity, severe malformations of the gastrointestinal tract, diabetes,

cystic fibrosis of the pancreas, and the lace has also changed current

patterns of malnutrition. It has increased the danger of malnutrition

secondary to disease unless such children receive the special nutritional

support or therapy they need_ Often children afflicted with diseases such

as some forms of cancer can now be prevented from developing additional

complications due to malnutrition by appropriate nutritional measures.

Yet failures to identify or meet some children's needs for special diets,

foods, and health assistance are still quite common. Finally, alterations in the social environments in which children live

have also given rise to changes in malnutrition (10, 11). Some of these

problems are caused by children themselves selecting inappropriate food.

Other are due to lack oftime for parents or pressures on parents, such as

those that occur in many single-parent families or in families in which

both parents work. Lack of supervision of children's diets may increase

the risk of some forms ofmalnutrition.

These various problems are summarized in table 1.

Types of Children and Their Needs: Socioeconomic and

Medical Classifications of Those With Special Problems

Even within a specific age group, diet- and nutrition-related needs are

far from homogeneous_ Further categorization by social and medical

characteristics allows for greater specificity with respect to the need for

nutrition education (see table I). The first group comprises normal, healthy children whose parents

require only routine dietary advice and anticipatory guidance on the

specific needs of the child according to his age and developmental stage.

The second comprises those with special needs that arise from

socioeconomic and geographical causes. Income, ethnicity, and other

factors such as special dietary practices that diverge from sociocultural

32

1G
TARE 1. Uksly Nutdionielied Problems of Children With Mewl Characteristics From the Medial and Sodom* Standpoint

Sp* Chiraditsics of Children Most at Risk

Problem assolied

*sag to Medal,

EMI* end

Sods) Fibre

Clikven Who

Am Normal

and Healthy

Special Hods Due

Socioeconomic b Rapid Growth

Diesthantigei or Recovery:

Spedi Needs

Due to Chem

Handicaps, or

Family Psthology:

Inadequate diet

Starvation Rare Rare Rare Rare

Memel& Rare Common Rare Rare

liacoutrient deficiencies Rare Uncommon Uncommon Common

blePPrePriate diet

Imbalances Common Common Common

Overnubition Common Uncommon Uncommon

Toxicities Uncommon Rare Uncommon Uncommon

Other' Uncommon Common Uncommon Uncommon

Ignorance of or failure to

fob, health promoton

dime prevention guides that affect nutrition stabs Uncommon Common Common Common

Failure to identify or meet special

needs (diets, foods, and

health assistance) Uncommon Common Common Common

Ifte.inccme fanity, ettsi*, and dwgent family food habit

2premakres, small fa' dates, oily repay grcwing infants, those recovering from illness, and juvenile pregnancy,

Prittkitry or acquired chronic disease.

'Poor bore or feeding techniques, poor thin; of meats, pica, use of foods causing allergies or intolerances, tad of supervision, mauve use of food for emotional

PerPoetil
norms, geographical isolation, or migratory patterns require special attention, for the children of such families are at greater risk of

malnutrition than others. These include the children of migrants, non- English-speaking parents, Southeast Asian refugees, native Americans,

and residents of American possessions and trust territories. Also deserving

mention are children whose families have unusual eating habits and those

from families who live on limited resources in unfamiliar environments

such as the children of some American military service personnel

stationed around the world. All children in these groups are likely to have

special needs for dietary counseling and education. A third group of infants and children comprises those who have special

dietary needs due to specific physiological events or problems. This group

includes premature or "small-for-dates" infants, pregnant adolescents,

adolescents during the growth spurt, and children and youths of all ages

who are obese as well as those who are undergoing catchup growth during

recovery from severe disease, injury, or malnutrition. (These latter may

also have other problems that fall into the following category.)

A fourth group of children with special needs comprises those who are

at risk of malnutrition secondary to disease. They may need therapeutic diets or very detailed and specific nutritional counseling and support because of disease. handicaps, or other conditions including parental

inadequacy, alcoholism, and neglect. Diseases requiring special diets and

counseling include some forms of cancer, heart disease, diabetes mellitus,

juvenile hypertension, renal disease, malabsorption, mental retardation,

obesity, and iron deficiency anemia. Pregnant adolescent girls and others

who have become dependent upon drugs or alcohol also require special dietary advice. Adolescents who have children often need advice for

themselves as well as their offspring. Children from affluent, highly educated, and stable families, particularly if they live in areas where access to health services is good, are more

likely to receive care than are those whose families are poorer, less well

educated, less stable, and of minority ethnic groups especially if they live

in areas where health services are poorly developed. Although the severe

and acute problems the children from affluent families suffer from are

usually diagnosed and treated, more subtle problems often fail to be

recognized. In general, these diet-related health problems presently are not dealt with as easily or as well as those difficulties arising from

malnutrition among the poor.

Functional Classifications of Child Nutrition Needs

Common nutrition-related needs of children can also be classified

functionally on the basis of the source of the child's difficulties or

problems (I2 13). These are summarized as follows: Problems in the child's environment

Child-rearing and home-management-related problems Behavioral-emotional-learning problems

34
Problems associated with ignorance of general health information

and education

Problems due to lack of routine, diet-related counseling Problems related to temporary deviations from normal growth

and development Problems related to stress and short-term transient conditions

Nutrition management problems k elated to physical and mental handicaps or long-term illness Multiple problems that belong in one or more of the above

categories Examples of nutrition-related problems of children are given in the

following list. These problems are classified according to the difficulties in

functioning involved with the problem and are listed according to their

increasing order of complexity and the increased clinical expertise that is

usually required to deal with the problem. (That is, problems in the child's

environment are relatively simple to deal with, but multiple problems such

as those experienced by a poor, out-of-wedlock, pregnant, teenage girl with diabetes are very complex.) (1) Environmental

Physical problems of the home Cultural

Community Lack of resources

Use of resources

(2) Child rearing and home management Inadequate provision for child care Poor management of money, life, food, clothing, and house- hold goods

(3) Behavioral-emotional-learning Behavioral and emotional problems with food intake and

practices Alcohol, drug abuse Retarded learning affecting food intake or practices

(4) General health information or education lack No source of referral for health information

No motivation for carrying out preventive or health promotion measures

Lack of age-specific anticipatory guidance

(5) Disordered or inadequate growth and development due to lack

of anticipatory guidance and supportive counseling appropriate

for age

Infants, 0-12 months

Preschoolers, 1-5 years School-age children, 6-12 years Teenagers, 13-19 years Parents or responsible adults

(6) Teanporary deviations in growth and development Inadequate or poor psychological development Inappropriate or inadequate food intake

/1 35
(7) Short-term and transient illnesses or conditions

Acute illness and surgery Adolescent pregnancy and lactation Disruption of home and food management (8) Physical difficulties involving long-term illness

Neurologic, neurosensory muscular, orthopedic, or mental

retardation

Chronic difficulties of the gastrointestinal tract Chronic cardiovascular blood and renal disease

Metabolic difficulties

Dental caries

Allergies Obesity Anemia

(9) Multiple and involved problems, including one or more of items

I through 8

Juvenile pregnancy Prematurity Very low birth weight Small for dates

Birth defects

Inborn errors of metabolism

Child abuse or nee

Alcohol or drug abuse

Nutrition Education Needs of Children and Their Parents

Parents today report that they have persistent problems with children's

diets (14, 15). Although they wish to improve their own and their

children's health through changes in diet and other health-related

practices that are prevention oriented, barriers to their doing so include

the high costs of health care, inflation, lack of trustworthy dietary

information, competing concerns for resources, drains on resources by

more pressing problems, denial of nutritional problems, and the stigma

associated with such problems as obesity or misuse of alcohol (15).

Nevertheless, American parents are interested and concerned about

health, open to discussion with their children, worried about many dietary

issues, and realize that some constitute health hazards. Therefore, they are

likely to be receptive to improved nutrition education, counseling, and

nutrition support services. In the following section, some of the nutritioneducation-related issues are summarized for each group. Additional

sources that explore the nutritional and health needs ofvarious groups are

available (16-20). Groups of children with special socioeconomic or

medical characteristics or those who exhibit functional problems often

require additional attention directed specifically at their special problems

Nutrition Education Related to Infants and Their Mothers

To reduce the prevalence of adverse conditions such as diet-related

causes of fetal malnutrition, low-birth-weight infants, and infants born

36
with birth defects, comprehensive health care for all pregnant women and

those who are likely to become pregnant should include dietary advice. The additional nutritional needs imposed by pregnancy and needed

adjustments in quantities and quality of food are not necessarily obvious

to pregnant women, and guidance in food selection is therefore warranted. Iron supplements of 30-60 mg per day are now routinely recommended, and certain women with special needs may also require supplementation with folic acid or other micronutrients in addition to dietary advice. As pregnancy progresses, frequent dietary advice is often necessary to avoid ,

inadequate or excessive weight gains. Counseling on breast feeding is also

best begun during the pregnancy. Some pregnant women require additional nutrition-related interventions, including extensive nutrition counseling, provision of food assistance, or help with food and money management. Although the provision of adequate food, appropriate counseling, and education about diet can

help to lessen the risks of adverse outcomes at birth, in most cases other obstetric and medical measures are necessary. Therefore, nutrition

services are best provided in the context of a health services system. One form of low birth weight or smallness for dates is associated, among other factors, with low weight of the mother before pregnancy and poor weight gain during pregnancy. Pregnant adolescents, low-income blacks, and some of the other minority groups are more likely to become pregnant while in poor health and poor nutritional condition and thus are

in particular need of attention. Alcohol abuse is also associated with

smallness for dates. Lack of health care and lack of dietary counseling fcr women who suffer from certain forms of diabetes, inborn errors of metabolism. hyp -rtension, or kidney or heart disease are also associated

with poor pregna.-ry outcomes, often including low birth weight The

hazards to fetal health imposed by these diseases can be lessened by health

and nutritional guidance. Appropriate diet can also reduce the incidence

of birth defects arising from fetal alcohol syndrome and certain inborn

errors of metabolism, such as phenylketonuria and a rare type of congenital hypothyroidism arising from extreme maternal iodine deficien- cy. Appropriate infant feeding and diet after birth can prevent additional complications that arise in some infants who are born with special nutrition-related problems. Other preventable causes of low birth weight and smallness for dates are unrelated to nutrition but yield to obstetric

and medical interventions. What is known now must be applied by all of

these means to prevent poor outcomes, and more effective ways must be

found to treat those with poor outcomes that cannot be prevented now.

Adequate diet for satisfactory growth and development is crucial during

the first year after birth. Human milk is the ideal infant food, and unless

there are special problems, breast feeding is recommended, with no other

foods introduced until 4-6 months of age. Lactating women also need

dietary advice to ensure that their diets are appropriate. If the infant is not breast fed, some type of heat-treated milk or commercially prepared

formula and appropriate supplements constitute the infant's staple food until 4-6 months of age. Nutritional imbalances and excesses, and

unhygienically prepared foods must be avoided in infant diets to promote health and prevent diet-related risks for disease. All women with newly

37
born infants need advice on breast- or bottle-feeding techniques, appropriate types and amounts of foods and supplements, and monitoring infant

growth and weight gain' s. Many complications can be prevented through case-finding of infants at

high risk so that parents can be furnished with appropriate dietary

guidance. For example, the most common allergy-causing food in infancy

is milk provided in an inappropriate form. By avoiding whole orskim milk

and other potentially allergenic foods until 6 months of age by breast

feeding or using heat-treated milk or formula.s, some potential cases of

allergies due to the proteins in milk can be prevented. Lactose intolerances

are most commonly due to prematurity, infectious disease or other

gastrointestinal problems, and more rarely, hereditary deficiencies or

intolerances affecting certain ethnic groups. Anticipatory guidance regarding the use of special foods low in lactose for infants who are suffering

or recovering from gastrointestinal infections or afflicted with food

allergies and special precautions to avoid high-lactose intake for infants of

families with a history of lactose intolerance can prevent problems from

arising. Similarly, breast milk or other low-fat foods can prevent problems

of the fat intolerance commonly seen in premature and small-for-dates

infants fed high-fat foods. The parents of high-risk infants need special

help concerning nutrition regardless of their it.r.omes. Those who are poor

as well have a particular need for attention because of the other dietrelated problems that often also beset them. However, affluent mothers of

premature and small-for-dates infants may also require special counseling

because of their infants' needs forspecial nutrition measures.

By 4-6 months of age the normal infant needs more iron in the diet,

which is provided in fortified cereal, fortified formula, iron supplements,

and other iron-rich foods such as pureed red meats introduced later in the

first year of life. The infant also needs fluoride either from fluoridated

water or from another source such as a fluoride supplement. However,

fluoride intake must not be excessiv If supplements are used they must

be adjusted for the age ofthe infant and the fluoride content of the water

supply. Overfeeding or overeating on the part of the baby must also be

prevented through counseling in food selection, monitoring weight gain,

and adjusting food intakes to energy needs before excessive weight gain

occurs. The special needs of infants in low-income families or families with

special social and cultural characteristics require dietary guidance tailored

to the economic realities and food habits of the family. Failure to meet

these needs because of a lack of advice or inappropriate advice results

health and nutritional problems, which may then require expensive

interventions. Infants may fail to thrive because of diseases that have not been

diagnosed or because they are not properly cared for, are abused, or are

simply not fed. Dietary treatment is necessary but is usually insufficient

by itself to deal with such conditions or to prevent their recurrence.

Families with such histories need medical help before their children

develop problems. Counseling is also required for the necessary gradual transition to the

family diets during and after weaning the infant from the breast or bottle.

38
This begins at about 6 months of age by the gradual introduction of solids with appropriate texture, consistency, and nonallergenic characteristics. Those responsible for infant care need to be aware of the risk of dental caries if staple foods- are high in fermentable carbohydrates. They should be advised to reduce the risks of dental caries from fermentable

carbohydrates by keeping children from falling asleep with bottles still in

their mouths and by a gradual weaning from the bottle, as well as avoiding

the use of sugar in baby foods. In late infancy, infants should be

encouraged to feed themselves. Parents should also be counseled regarding possible physiological anorexia in late infancy, which often occurs as

growth and, hence, appetite declines. Poor appetites are also associated with teething and illness, and parents need guidance on appropriatft steps

to take to minimize risks to nutritional status from these causes.

Nutrition Education and Preschool Children

Ideally the preschool child's physical and social environment should

support emotional, intellectual, and motor skill development. Parents must distinguish between expressions of real nutritional need and other needs that are sometimes expressed as nutritional needs. They often

require advice on how to express their own feelings toward the child other

than through the use of food alone. Parents also need to understand that the normal preschooler's striving

for greater independence often includes temporary refusals to eat, food

jags, and dawdling. Healthy attitudes toward food can be fostered, and

parents should not become unduly concerned about fluctuations in food

intakes or use counterproductive measures such as forcing, coaxing, or nagging. The preschool child's parents play a powerful role in ensuring that nutrition is an enhancing factor during the preschool period. There are a number of positive steps they can take to do this. First, they can ensure

that levels of physical activity and rest in the child's daily life are sufficient to maintain a good appetite and normal growth. Second, the parents can provide nutritious food in the home and see to it that it is provided in other settings in which the child eats, such as preschool and nursery

school. Third, they can teach the child to choose and eat nutritious food

by emphasizing nutrition in meal and snack planning and by discussing it with the child. Fourth, they can begin to help the child to distinguish between reliable sources of guidance on food choice and strictly

promotional messages. Fifth, they can foster appropriate eating behaviors by acting as role models and by providing suitabl eating experiences. Sixth, parents can handle struggles over food in su, a manner to avoid

the development of feeding problems. Seventh, they can begin inculcating

habits of eating in moderation and avoiding food waste and excess. Several special problems that may arise in the diets of preschool children are common enough to deserve special mention. Particular emphasis in diet planning must be directed toward iron because it is low in

the diets of many preschoolers. Whole milk and other iron-poor high- energy foods such as baked goods, candies, and soft drinks should be offered in moderation. Skim or 2 percent milk can be substituted for

39
whole milk, and foods rich in iron should be increased, such as red meats,

poultry, and fortified, enriched, or whole grain cereal products. Fluoride is

another common dietary deficiency among preschoolers. If they do not

drink fluoridated water, fluoride drops or supplements are recommended.

In addition to good oral hygiene and frequent visits to the dentists, caries

prevention requires moderation in the consumption of sticky candies,

confections, and other foods, especially between meals. Such foods

contribute little nutritional value other than energy to the diet, and if they

are given in excess for rewards or as signs of love, the child may equate

sweetness with goodness; hardly sound nutrition education.

Excessive weight gain requires monitoring of growth status and

modification of diet and exercise patterns. Experts do not agree on the

routine alteration of diets of preschool children who exhibit predispositions for acquired hyperlipoproteinemias or high blood pressure unless

other evidence of overt disease exists, although the possibility of harm

from such dietary modifications appears to be slight if they are supervised

by a physician and ongoing health care is provided simultaneously.

School-Age Children

Parents continue to play a pivotal role in the nutrition education of

children in the school years. First, it is up to them to provide good

examples and guidance that will instill positive attitudes about food and

healthful eating habits. These include regular eating patterns and wise

choices of foods for snacks, as well as providing meals that carry their fair

share of nutrients, moderating the use of foods (especially sweets) for

rewards, ensuring that conditions at home encourage the child to eat

breakfast, and helping the child to become a sophisticated and responsible

food consumer. Second, parents can enhance child nutrition by establishing consistent guidelines that are followed in managing the child's food

intake. Guidelines include letting the child know what foods are

considered desirable for him to eat at meals and snacks within the home

and similar principles governing away-from-home eating. In coping with

the child's food dislikes, a considerate but conservative attitude that stops

short of the parent becoming a short-order cook is advisable. A fair, openminded, and accommodating attitude toward the child's preferences for

favorite foods in meal planning is helpful, but it must be tempered by

judgment in acceding to the child's requests for foods that the parent does

not want the child to have. Parents also need to lay down general

guidelines to help the child develop necessary social skills connected with

food and eating, such as the rudiments of adult table manners,

entertaining guests, and assisting with food-related chores. A third major

way in which parents can enhance child nutritional status is to promote

eating and physical activity habits that foster normal body fitness within

the entire family. Measures include furnishing role models of moderation

in food intake, a physically active life, and maintenance of body weight at

normal levels. Parents need to take steps to ensure that the child engages

in vigorous daily physical activity on a year-round basis and to help the

child practice non-food-oriented forms of emotional release. Food should

be used primarily for relieving hunger rather than for emotional purposes,

40
such as rewards, punishment, pacification, or as the major means for

expressing affection. A fourth item on the parental nutrition education agenda is to ensure

that children's diets are adequate and balanced. Although growth during

childhood is slow and steady, nutritional needs are greater in proportion

to body weight in childhood than in adulthood, and therefore dietary

quality is important for children. In planning menus for furnishing a

wholesome and nutritious diet to the school-age child, intakes of iron and vitamins A and C deserve attention. Food sources rich in these nutrients

are few in number and are not usually preferred by most children, and

therefore they tend to be the "problem" nutrients. Food guides are helpful here. They stress inclusion cif good sources of iron such as red meat, poultry, and some fishes as well as iron-fortified, enriched, or whole-grain breads and cereals, the dar!f: green, leafy and deep yellow vegetables, which are good sources of vizamin A, and citrus and other fruits and

vegetables that are good sources of vitamin C. Most children receive a

higher proportion of the protective nutrients from regular meals than from

usual choices of snacks. Therefore, children who eat regular meals are

more likely to have healthful diets than are those whose eating patterns are more sporadic. In addition, small children should not be subjected to

long periods of time without food, and therefore skipping meals or substituting snacks for breakfast and lunch is not advisable. When

excessive intakes of foods that are high in calories and low in protective nutrients (such as vitamins and minerals) are a problem, the solution is to

restrict availability of these foods within the house and to teach children more appropriate choices. The wise choice of snacks from the standpoints of energy intakes, overall diet quality, and the prevention of dental caries should be stressed. It is also up to the parents to ensure that family diets provide moderate amounts of energy, total fat, saturated fat, sodium, and

cholesterol so that excesses and imbalances of these food constituents do

not occur. Imbalances of fat and sodium are present in many children's diets. Moderate downward modifications pose no known health risks and may be of positive health benefit. Fifth, parents need to take steps if excessive fatness or obesity has become a problem for the child. Working with a physician, the parents

should take measures to increase the child's physical activity while slightly damping energy intakes, which will permit the child to grow normally while losing fat. Childhood obesity is more likely to be due to low-energy outputs than high-energy intakes. Even in the school years, obesity has adverse effects upon child health and development. Therefore, even if it

cannot be eliminated, efforts to reduce its severity are desirable. However, in children the goal is fat loss, not necessarily weight loss. This permits the child to "grow into his fatness" rather than stunting his growth by very

restrictive dietary measures. Childhood obesity can largely be avoided if parents and their children

are assisted in developing food habits that balance food intake with energy output and therefore maintain normal body fatness. However, nutrition

advice will be of little use unless food is available in moderation, the child

leads a physically vigorous life, and food is not used excessively for emotional purposes. Low calories, nutritious items in place of higher

41
calorie items in the child's diet, and avoiding the excessive use of foods for

emotional purposes are useful steps in this direction.

The special needs of certain groups of children as described previously

among preschool children continue during the school years. Obesity is

probably the most common problem. Poor growth due to diet or illness is

also present in some groups, especially low-income minority group

children. As the child grows older, he begins to eat more of his meals

outside the home. Parental control over diet becomes more tenuous and

thus the child must assume greater responsibility, especially if a therapeutic diet is indicated. For this reason, dietary counseling for the child who

must adhere to a therapeutic regimen requires participation of the child

and steps to help make the larger environment conducive to adherence

rather than concentrating solely on the parents and the home.

It is also important to adjust C..)vernxnent-sponsored meal programs for

children with special needs so that they are not exposed to discrimination

or ridicule because their families' incomes or their own specific social or

physiological characteristics differ from those of their peers

Nutrition Education Needs of Adolescents

The pubertal growth spurt is a period of growth exceeded in intensity

only by that of the fetus and the infant. Significant increases in almost

every nutrient are needed for sustaining rapid growth rates and larger

body size. For this reason alone specific information and dietary

education are needed for adolescents during the period of their most rapid

growth. Special attention also needs to be paid to intakes of iron,

especially among adolescer t girls. Moreover, it is important for adolescents to understand the grc,wth process so that they will not become

unduly alarmed by the pace, dining, and temporary deviations in size that

occur as puberty begins. Ideal weight-for-height tables are of little help in

judging whether the growth of individual adolescents during the year of

maximum growth is appropriate because they represent averages based on

age rather than on physiological maturity, and the timing of the pubertal

growth spurt varies widely by chronological age. More specific guidance

from a health professional is therefore needed so that appropriate growth

is maintained. Undernutrition with re cct to energy is rare in adolescence, while obesity is relatively common. If excessive weight gain occurs

in the prepuberty period, obesity control measures should include

moderate reductions in energy intakes and stepped up physical activity.

Severe dietary restriction accompanied by weight loss is not advisable

except in cases of morbid obesity, as it may restrict linear growth. Thus, a

more conservative goal is to maintain or only slightly decrease weight

while allowing growth in height and lean tissue to continue. A year or two

after the pubertal growth spurt, those with excessive body weight may

again need dietary counseling, and at this point weight loss can be

encouraged without danger to growth or health.

Dietary imbalances are also relatively common among adolescents and

are exacerbated in some cases by irregular food habits and an excessive

intake of snacks and fast foods at the expense ofregular meals. Teenagers

42
often eat large amounts of foOd between meals that has fewer protective nutrients and more sugar, starch, and energy than food at regular meals. These dietary habits, taken together, pose risks of dental caries and obesity as well as shortfalls in some of the protective nutrients. In

addition, these habits tend to result in intakes high in total fat, saturated

fat, cholesterol, and sodium. Moderation is important in the intake of food

high in these constituents especially by those who are known to be at risk

for obesity, hyperlipidernia, or high blood pressure. All teenagers can be helped to select snacks and foods away from home that meet their overall nutrient needs while avoiding excess. As children begin adolescence, they are dependent upon their parents for their dietary needs- By the end of adolescence, they are largely

independent Parents have the difficult task of helping adolescents to assume greater responsibility for their own nutrition and health while ensuring that dietary essentials for growth are met. Several steps are helpful in achieving these goals_ First, parents and teachers must provide adolescents with the assistance they need to understand their nutrient needs and how to meet them as their needs change with growth. Enormous increases in body composition and nutrient stores must be achieved during adolescence, and these must come from food. Nutrient

needs vary during the period from 10 to 20 years, owing to the differing demands imposed by the various phases of growth. Increases in nutrient needs associated with growth are especially high during pubescence (the period up to the attainment of sexual maturity). During later adolescence, needs for nutrients stay high to maintain the new tissues and physiological functions resulting from growth. Adolescents of the same calendar age have very different nutrient needs because time of maturation varies both

between males and females (males experiencing the growth spurt about 2 years later on the average than females) and between early and later maturers of the same sex.

Second, parents can help adolescents adopt and maintain healthy

dietary habits. To do this, it is important to ensure that energy needs as well as intakes of protective nutrients are satisfactory. The "basic-four"

food guide adopted for teenagers is helpful for this purpose, but special emphasis needs to be placed on food choices that are high in iron and

calcium because teenagers' intakes are often low in these nutrients.

Dietary advice should also include moderation 2n intakes of foods high in energy and low in protective nutrients. Third, parents need to work with adolescents to find ways to eat that fulfill their own individual needs, philosophies, and wants without doing violence to their nutritional status. Adolescent preferences for frequent snacks and "mini" meals and the unconventional meals they sometimes eat are no cause for concern if these preferences are included in teenagers' daily nutrition plans. Fourth, parents can help adolescents to identify and alter eating habits

that are not conducive to good nutritional status. The problems that may be involved are several, including longstanding poor dietary intakes, irregular and unplanned food intakes, and excessive intakes of high- calorie, low-nutrient density foods. Intakes of total fat, saturated fat,

43
sugar, and cholesterol may also be excessive and should be lowered. Some

adolescents have low intakes of dietary fiber, and increasing intakes can

ensure notation ifconstipation is a problem.

In summary, the Dietary Guidelines, which were recently released by

the U.S. Department of Agriculture and the Department of Health and

Human Services, furnish a good guide for achieving more appropriate

dietary balance. Other points specific to the needs and wants of

adolescents also need emphasis, however. Reliance on vitamin pills rather

than foods to ensure nutritional adequacy needs to be deernphasized.

Extreme versions of alternative lifestyle diets such as vegan-vegetarian

diets, which provide little or no animal foods, especially when they are

coupled with "health," "natural," and "organic" food diets, are to be

avoided. A number of dietary treatments of unproved therapeutic utility

for acne, hyperactivity, and depression are popular. The use of vitamin

pills, mineral supplements, or special diets has not been demonstrated to

be beneficial in alleviating these conditions, and they are better dealt with

by other measures. Alcohol use is best avoided entirely, or at the least

until late adolescence, and alcohol abuse should be avoided at all ages.

Discussions with adolescents on the uses and abuses of alcohol are

sometimes avoided by parents, seemingly out of fear that the very mention

of alcohol will in itself lead to excessive consumption. Some teenagers

develop drinking habits that predispose them to alcohol abuse simply out

of ignorance, and therefore frank discussions are in order. Teenagers

should be taught that they need not drink at all, but that if they do, they

must drink sensibly, using alcohol in moderation along with food,

drinking slowly to dilute the dose, avoiding solo drinking for emotional

reasons, and eschewing any alcohol consumption when driving.

A fifth step parents can take to enhance nutritional status is to help

teenagers to keep their weights at appropriate levels or to alter their

weights if necessary to achieve better health status. The teenager may have

unrealistic notions of body image and physique that need correction.

Parents can also provide support and positive role models to encourage

adolescents to take responsibility for maintaining healthful dietary habits

and weight levels. The keys to obesity prevention include monitoring of

fatness status, moderation in dietary habits, a physically active life, and

provision of psychological support from parents and peers. If obesity is

present, parents can help the adolescent determine if, when, and what

action is called for.

Some adolescents need special dietary advice. Among them are the

obese (particularly females in low-income groups), the very lean, those

who diet excessively, the very poor, those who are living independently,

those who are known to have deficiency diseases or to already exhibit dietrelated risk factors for chronic degenerative diseases, pregnant girls, those

on alternative diets (e.g.. vegan, vegetarian, health, natural, and organic

food diets), and adolescent parents, especially if they are poor or members

of minority, ethnic, or social groups. Adolescents who suffer from diseases

or conditions that require therapeutic diets or who are on self-determined

diets for treatment of acne or other conditions are also especially in need

44
of help. Finally, pregnant teenagers need nutritional assistance. Their energy needs are elevated, as are their other nutrient needs.

NUTRITION EDUCATION PROGRAMS

Remarkable progress has been made over the past decade in alleviating poverty-related malnutrition in children. Only a decade ago, in a time of

relative affluence and low food prices, these forms of child malnutrition were far more common among children from low-income families than

they are today (21-28). The exuberant proliferation of categorical programs instituted by the social legislation of the 1960's and early 1970's provided food and health services and did a great deal to ensure that all children received enough to eat. However, these programs have not dealt as effectively with problems associated with nutrition education, excessive

food intake, or fostering healthful food habits when sufficient food is available. Coordination among programs has also been poor. Their

failings in these latter areas need to be corrected, but these shortcomings do not justify the elimination of food and health programs. It is naive to

assume that freestanding nutrition education programs will be the remedy. Categorical food programs and nutrition education programs are not

substitutes for each other, because they deal with a different set of nutrition-related problems. The adverse effects of even small shifts in the availability of food and health services on child health even in the face of nutrition education has been well demonstrated (25, 26). Therefore a more

sensible alternative is to strengthen nutrition education components of

these programs.

The Role of Nutrition Education and Information

Much faulty nutrition and resulting ill health are due to inadequate knowledge, attitudes, or practices regarding nutrition rather than to the unavailability of necessary foods or inherent medical probi;mns. For these problems, nutrition education is useful, but usually it must be coupled with efforts to modify the social, economic, food, and health-related

aspects of the environment. When there is a shortage of food or illness is present, the need for nutrition education is even more pronounced. When

specific food, health, education, and welfare programs for children exist, nutrition education components within them are needed to supplement and enhance their effectiveness. Nutrition education contributes to the

efficient and effective delivery of other social services as well and

stimulates individuals to azt so 1 that such services can have maximum

effects. When general welfare services are Tninim21, nutrition education

and information services are even more important, because without them

even a child's basic needs for food to maintain good health may be misunderstood nr given low priority by uninformed parents or care providers. However, nutrition education is best thought of as a supple45
meat to, rather than a substitute for other food, health, education, and

welfare programs.

Purposes of Nutrition Educations for Children

To inform means to provide information without attempting to change

attitudes and practices. To educate means to inform and also

attitudes and practices. Although controversy exists over whether the

appropriate goal of Government-sponsored programs of this nature for

adults should be to inform or to educate, there is more consensus that

nutrition education is appropriate for children, especially if the formal

education system or health-related systems are involved in its delivery.

Variations in Nutrition Education Programs

Programs in nutrition education and related areas vary in a number of

ways. First, the type of child who is covered varies. Some programs are

open to all children of a specific age. Others are restricted to specific

groups, such as children from low-income families or those with other

physical or social characteristics that put them at special nutritional risk.

Additional criteria for eligibility also exist for some programs. Other

programs aim not at reaching the child directly but at training professionals, paraprofessionals, or others such as parents who in turn indirectly

influence the child.

Second, the programs differ on the site in which the child is reached.

These include the home, day care center, school, a health care setting,

other locations outside the home, or a child care institution.

Third, the programs can be classified by their predominant purpose.

Such a classification includes programs devoted solely to nutrition

education, those in which nutrition education is a component or

supportive service in a larger program, the production of publications or

mass media efforts, those devoted to the training of persons who will in

turn provide nutrition services to children, nutrition education, research

programs, and nutrition advertising, or labeling projects.

ourth, programs differ ire their major emphases, themes, or topics. In

one recent study (29) emphases among programs varied from considerations of diet and health and basic nutrition through a large variety of

food-related topics including food storage, safety, preparation, and

handling.. In another study, themes among programs were found to vary

from an emphasis on general nutrition or diets to deficiencies and diseases

to primary emphasis on health services? Unfortunately, a common

classification scheme was not used by the different investigators in any of

the major surveys that have been done, and therefore, information on

program content is still fragmentary (29, 30).3 The basic problem is that

3Personal communication (anonymous source). US. Department of Health. Education. and Welfare.

46
various Federal agencies define nutrition differently. Therefore, without additional descriptive information, it is very difficult to determine what is meant by the term "nutrition education" as it is used in any given context.

Federal Nutrition Education and Related Programs

In the past 5 years, several useful reviews of the Federal nutrition

education programs have been published. In 1977 the Library of Congress identified 30 programs providing nutrition education in 11 agencies within the Department of Agriculture

(USDA), Department of Health and Human Services (DHHS), and the Federal Trade Commission (FTC) (30). At least 22 of them included children in their criteria for eligibility (30). Activities both within and between agencies were found to be without formal coordination and duplications existed. Congressional oversight was dispersed among 19 Congressional committees. The 30 programs themselves were found to

operate under no unified Federal policy and to lack clear, concise goals. Problems of the distribution of materials and information were common, and no evaluation of the actual impact of the nutrition education had been carried out.

In 1978 the Library of Congress updated the 1977 report cn Federal nutrition education programs (31). At least three new programs serving

children were identified, bringing the total to 25. Federal expenditures in

these programs bad also increased by 50 percent largely because of the inclusion of the USDA's new program in Nutrition Education and Training (NET) and additional funds for education and training in the Special Supplemental Food Program for Women, Infants, and Children (WIC). Both of the major departments (USDA and DHHS) appeared to be giving increased attention to nutrition education. The USDA had

placed greater emphasis on developing mass media techniques, improving

the design and content of publication, and coordinating activitiesthrough

a human nutrition policy committee. Within DHHS, the Office of Health

Information and Health Promotion had the responsibility, although in general, DHHS efforts did not appear to be as intense or directed as those of USDA.

In early 1979, DHHS's Nutrition Education Subcommittee undertook a more detailed survey of all nutrition education and information activities within that department A total of 43 nutrition programs were identified

(see footnote 3). The large number of programs should not neccs.5....eily be taken as a sign of growth as different definitions and ways of counting

activities were employed. For example, a broad definition of program was used; activities that were not identified as line items in the budget were

included. Budgetary breakouts were not presented in the preliminary

report Also, the subcommittee's definition of nutrition education was

different from that used in the other studies cited (30, 31) (see footnote 3)

in that direct delivery of services (such as the nutrition counseling of patients) was included and some programs were identified for separate discussion that had been grouped together in the other studies.

47 P1
Nutrition Education and the President's Reorganization Project's Food

and Nutrition Task Force Study

According to the findings of the President's Reorganize' ion Project's

Food and Nutrition Task Force study (32) published in 1978, approximately $118 million in Federal funds were directly attributable to

nutrition education (table 2). Approximately 20 programs or program

components, employing 60 people, were identified, most of them in the

USDA. The major programs were the Expanded Food and Nutrition

Education Program (EFNEP) of the Science and Education Administration, the Food and Nutrition Extension Program of the same agency, the

NET program of the Food and Nutrition Service, and the WIC program,

also operated by the Food and Nutrition Service. Together these four

programs accounted for 84 percent of the Federal funds devoted to

nutrition education, and all USDA programs accounted for 89 percent of

TABLE 2. Nutrition Education Expenditures identified by the Food and Nutrition

Task Force, President's RISOISIBraZilltiOft Protect, 1978

Motor Agencies involved and FY 1978 ReSotarC41111 $ (Million)

Agriculture Science and Education Administration

Expanded Food and Nutrition Education Program (EFNEP). Extension 50.6

Food and Nutrition Education Program. Extension 10.0

Human Nutrition Center 1.2

Cooperative Research 1.7

Food and Nutrition Service

Special Supplemental Food Program (WIC) 12.9

School Nutrition Education and Training 26.2

School Nutrition Education and Training Surveys 0.7

Cash Grants for Nutrition Education 1.0

Food and Nutrition Information Center 0.3

Health, Education, and Welfare

Office of Education

Title IV. Elementary and Secondary Education 1.7

Health Services Administration

Bureau of Community Health Service 5.0

Indian Health Service 1.5

Public Health Service

National Institutes of Health

Heart. Lung. and Blood 4.0

National Cancer Institute 0.06

National Institute of Arthritis. Metabolism, and

Digestive Diseases 0.07

National Institute of Dental Research 0.10

National Institute of Child Health and Development 0.50

Center for Disease Control

Bureau of Health Education 0.50

Administration on Aging Nutritic:-. Program for the Elderly Administration on Children, Youth. and Families

Head Start

KEY: * information unavailable.

48 se 4 0

4.0
the total nutrition education budget. The remaining 11 percent of Federal dollars were in DHHS-funded programs. This analysis has several flaws, stemming in part from different accounting practices in the various Federal agencies. Most USDA

programs have more specific mandates, and nutrition education is either a

specific budgeted item or otherwise relatively easy to account for in breaking out costs. In contrast, most DHHS programs include nutrition

education or nutrition counseling services as an optional component depending upon recipient needs for health services or education. An

accounting of programs' costs becomes extraordinarily difficult under such circumstances. Even programs such as Head Start, with relatively well-developed and mandatory nutrition education components. were omitted from this analysis because of the aifficulties in separating out

specific costs for nutrition education purposes in multiservice programs. For these reasons the nutrition education cost components of DHHS

programs were probably underestimated.

The 1978 General Accounting Office Report on Nutrition Information

and Education: Major Problems Discovered

In 1978 the Comptroller General of the United States issued a report criticizing nutrition information and education efforts at the Federal level (29). The highlights of that report are summarized in the following section.

Publications

The General Accounting Office (GAO) report included an inventory of published nutrition education material according to agency (29). The Office of Education did not appear to have produced any such materials. In that report, programs were not classified by specific themes or target groups, but rather all materials from the agency or administrative unit were classed together. Because program-by-program information is not available, the following steps are necessary before a more complete review

will be possible: (1) A complete list is needed of all materials produced at the Federal level or by federally funded programs at the State or regional level. Efforts should focus on obtaining information on all

programs. (2) A standard classification system must be developed that includes all of the terms used in both the GAO study and the DHHS

study. (3) Primary target audiences must be determined for each type of material for each program. (4) The materials should be clas3ified according to items 2 and 3.

Lack of Defined Areas of Respois bility

Agencies in each of the major departments still appear to lack defined

areas of responsibility, and certain subject areas are being addressed

simultaneously by several agencies or programs. Some of the duplication

49
is understandable since the target audiences vary. However, some of the

duplication appears to be due to failure of programs to use nutrition

materials from other agencies or departments. In the past year, both the

Department of Agriculture and the Department of Health and Human

Services have begun inventories of the materials they have available. This

should simplify consumer and professional access to specific types of

information.

Predominance of Printed Materials

Printed materials predominate over films, television, radio public

service announcements, or other mass-media-oriented efforts without any

assurance that printed materials are the most effective method of

information dissemination. Indeed, for child audiences there is reason to

suspect that they are not.

Lack of Formal Evaluation

Few materials in either department are formally evaluated, and most

agencies have little knowledge of the effectiveness of their nutrition

information activities in terms of audiences reached, message retention, or

changes in eating habits. Several of the more recent programs (including

Food for Thought sponsored by FDA and the National Institutes of

Health) as well as a few of the older programs (most notably NET and the

diabetes education activities of the Center for Disease Control) are now

routinely including evaluations in their nutrition education activities,

although much remains to be done in this regard.

Little Dissemination

The GAO's 1978 report found that very few of the nutrition education

publications were widely disseminated to the public. Both departments

have attempted to "spruce up" their publications for the lay public since

that time. For example, USDA recently produced a new guide to food

selection that was published in an attractive format for high school

students (33). It is also launching a pilot study that will involve the use of

the mass media with messages directed toward children. Similarly, the

Department of Health and Human Services has let contracts for the

development of more appealing materials and is currently developing

programs for educational television, which will include an emphasis upon

nutrition_

Overall Effort Weak

The GAO report found that Federal Government efforts to inform the

American people about nutrition had generally been insufficient A

particular weakness was the paucity of food choice information on types

and amounts of fat, carbohydrate, and protein or amounts of alcohol, salt,

and cholesterol_ Only a few programs have begun to address these issues,

although numerous surveys indicate that consumer questions are common_

50
Federal Nutrition Ed cat Programs is 1980

Nutrition education appears to accomplish its objectives best when it is provided in combination with other goods and services, such as food, health care, or more general education, and reinforcements are provided

simultaneously. Therefore, not only specific nutrition education programs should be studied, but related activities that might provide such reinforce- ments must also be investigated. The recent inventory of Federal food, nutrition, and agriculture programs compiled by the General Accounting Office after being especially commissioned by Congress was the primary source of data (34) for our study of child-related nutrition education and

information programs, which is described in greater detail in the following

sections. By using the computerized data base provided by GAO, it was possible to search all relevant entries anti to ascertain nutrition education

program activity; 37 programs were identified (table 3).

Budgets

Many programs do not report nutrition-education-related components separately; therefore the level of funding of nutrition education is extremely difficult to determine. Table 4 reports our findings. With the exceptions of the food and nutrition extension rrograrns and the NET

program, expenditures for nutrition education are included in larger programs with other primary missions. The expenditures for nutrition

education are possibly substantial in these other large, multipurpose programs, but breakouts of costs for nutrition education are the most elusive and difficult to make. In these same programs the service provider or researcher has the greatest latitude on whether to include the

component or not. Unfortunately, there is no guarantee that it is included

even if it is sorely needed.

The budget estimates highlight the need for better reporting systems on expenditures devoted to nutrition information and education, especially when they are part of larger service or research programs. These observations are particularly relevant to programs in DHHS and in the new Department of Education.

Eligible Children

Of the 37 programs reported in the General Accounting Office inventory, 15 of the nutrition-related programs serve the general child population, 13 serve low-income children, and 9 serve children with special medical or social characteristics, such as mentally or physically

handicapped children, migrants, American Indians, or ill children.

Program Purposes

In general, all children arc eligible for educational activities that may include some nutrition education (depending on the State, school system, and teacher). With the exception of USDA's NET program and DHHS's Head Start, the educational programs that exist are largely focused on the older child.

5 1

r
TABLE 3. lashilloss Induosillon and Retailed Progresso for Children

Setting of Programs Care

Children El IOWA

To illsoshre Program QM. Home Day Care School

Health

Selling

Other

illeektg Outside

Horne

Med- tube

Al children In setting

(1) School Breakfast, (2) Educational Tele- vision Programing X

X

(3) Chl Wren's Acker lining X

(4) Child Care Food Programa X

(5) Nutrition Education

and Training X X

(6) Consumer and Homemaking Education X

(7) Health Education X

(8) Food Safety: Nutrition X X X

(9) increasing Use of Fishery Resources X

(10) School Lunch Program' X

(11) Special Milk Program' X X

(12) Vocational Education Basic Grants X

(13) Food and Nutrition Extension Program x

(14) Product Safety Advertising for Alcohol

(15) 4H Youths

X x

x

Low-Income children

(16) Food Stamps X

(17) W1CSpecial Sup- plemental Food Program for Women, infants.

and Children X X

(18) Food Donation Programs X X X

(19) Expanded Food and Nubition Education

Program

Adult program X

Child program X

(20) Community Supple- mental Food

Program X

(21) Head StartNutritions X

(22) Follow through X

(23) Concentration Grants

Title I ESEA X

52 4 b rl %.) 0
I

IIII

i

Is Ix .

x

x

x

x . x X X X ijiltifil h !IL ii!

1 hillkiliiii Hi Ili

i ill g agaa ga

g

a
TAIRA lidessellose lialkuafted Weals of Gaud Nu Odeon

and Relalsd Programs di Miler Purpose of Merl

flielee Purpose of Programs

1 illudget (Federal Only)

11111111ems.

Reseeded

Nutribon education 20

Nutritkin Information education included as

a component of larger program in: ,1313

Education '136

Consumer information 113

Feeding 10411

temente services 222

Welfare =Fn..

Publications or mass media

Training of profeselorsals or related occupations

Research

Advertising or labeling

1

33

1. 2140

s<1

'No episodic breakouts for nutrition component or prograr' available for *leveret programs in this group. Me *lures available for EPSDT or referrals at Supplementary Security

Income recipients tar Vocational Rehabilitsbon and Chad Health Service. 2Thees estimates aro discussed elsewhere in this report and are subject to

considerabie error.

All children are also eligible for school meal programs. These are provided free or at a reduced price, depending on family income, to

children in schools or other educational settings from primary school

through high school. In addition, poor children are eligible for other educational programs with nutrition education components that start earlier in life, as well as for

a variety of food programs and health services with an optional nutrition

counseling component. However, aside from the USDA's EFNEP

extension program, children arc reached outside rather than inside their

homes.

Children with special social or physical characteristics are eligible to

receive special educational and health services geared to their needs. These programs sometimes include nutrition and are usually provided

through health services or in special wools. The providers of these

services also receive continuing education and training in several of the

service programs. The programs for all children emphasize consumer information, general or basic food and nutrition and food selection, and the buying, preparation, and handling of food. Programs for low-income families

include consumer information on Federal programs in some cases, but the

major emphasis is upon vneral or basic food and nutrition and food

selection. Within a health services framework, the provision of food and

54

4'0
nutrition counseling and education relating to diets, especially therapeutic diets, also are common. Programs for children with other special needs are

focused most heavily on nutrition colt! nseling within a health services context. Several programs have multiple emphases, although often there is no logical link between components. For example, the School Lunch Program does not include information on basic food and nutrition or food

choices unless the school elects to include this component.

Linkages

Although the GAO inventory requested that related programs be

identified, in no case did any of the program descriptions actually list any

related activities. This indicates either that the enabling, legislation is vague in specifying desirable connections between programs or that those who ^.ompiled the descriptions did not regard their programs as closely

associated with any other activities. Personal interviews with program staff

indicated that, in fact, a number of linkages sometimes existed at the Federal, State, and local levels and that, in general, program staff believed

that these were desirable and helpful to the children and families who

received services. Examples in which linkages were helpful include the Head Start-Child Care Food Program links, and the various Indian Health Service programs that enjoy close ties with several of the USDA

food program: the Extension Service, and other Public Health Service programs Also, the NET program in USDA has helped in some cases to

tie school food sk vice programs more closely to the formal classroom

cu;Iiculum, and the community food and nutrition programs have

increased participation in other federally funded efforts, such as food

stamps and child nutrition programs Other examples of positive cooperation could be cited as well.

Interviews with piogram staff also revealed that the present Federal bureaucratic st- .c.ture did not always actively foster the development of

linkages be teen programs. In the past few years the topic of nutrition has become politicized within the Federal Government, and interde- partmental rivalry has been marked (35, 36). As a result, interdepartmental cooperation may have been hindered. Federal officials at the program

level expressed concern that regularly scheduled interdepartmental meetings of middle-management level civil servants no longer took place. Until 1974 an interagency committee on nutrition education met on a regular basis and helped to foster linkages and cooperation at the Federal program level. Although the committee did not have policymaking

authority, it did help agency representatives to see the Government's efforts in a wider perspective that led to some cooperation and

coordination at the program level. Now interdepartmental meetings are usually at the policy level and those closest to the programs are not always

included. Much remains to be done if interagency contact at both the policy and program levels are to be facilitated in the future. Within the past year a number of signs of cooperation have emerged. For example, a

recent publication (37) describes a variety of Federal programs in many

agencies that may be helpful in providing nutrition information and

services to participants in many programs. The USDA and DHHS jointly

55

r
issued a publication on Dietary Guidelines for Americans. Nutrition

monitoring and surveillance are being better integrated into programs

within departments. Bot'A USDA and DHHS have sponsored human

nutrition research conferences (38, 39) and DHHS funded a national

nutrition education conference with the cosponsorship of USDA, FTC,

the Executive Office of the President, and the Society for Nutrition

Education (40). All of these activities included representatives of all

relevant Federal departments. Also, recent efforts on the part of both

departments in other program areas indicate that lately more attention has

been paid to coordination (41, 42). A number of problems remain (43-45)

that must be solved before interdepartmental cooperation can be

improved, but these efforts represent a first step toward achieving better

linkages between nutrition-related programs in the future.

Problems

Seven organizational problems inhibit nutrition education efforts at the

Federal level.

I) There are no formal mechanisms for achieving a working consensus

on nutritional guidelines for the public. This problem has two aspects. One

has to do with message content and the other with organization.

The basic messages in nutrition education must be practical and stated

in ordinary language. In the past, Government-sponsored nutrition

education efforts centered around food choice guides such as the basic

four foods, which provide only for sufficient intakes of protective

nutrients. Agreement was widespread within the scientific community that

such guides were appropriate. The message of "eat a variety of foods from

each of the four major food groups" was not controversial and met little

opposition from the private or voluntary sectors. However, in the last few

years, new developments have called into question the utility of such

guides as the sole or major message for consumers. First, as knowledge of

nutrient needs has grown and recommendations for specific nutrients have

changed, consumption of the basic four foods clearly does not ensure that

Recommended Dietary Allowances for all nutrients will be met. Second,

the guide fails to address the concept of moderation with respect to

intakes to avoid overnutrition, imbalance, and toxicity. Many parents

want such dietary guidance. They are also concerned about such issues as

the relationship between food, diet, and health as well as the safety and

nutritional quality of the foods they buy. If Government refuses to make

statements about these issues, consumers run the risk of being misinformed about food and diet by obtaining their information from the many

unreliable sources that make pronouncements on these topics today.

Although other reputable sources of information exist, most consumers

have great difficulty in selecting reliable sources. They regard the

Government as one such source. Therefore, even if definitive answers

cannot be giver, nutrition information produced by Government, which

evaluates all sides of controversial nutrition issues and leaves tht...

up to consumers, serves a purpose because it ensures that they asz well

informed and permits them the maximum choice. Similarly, a fcc guide

that assists in modifying dietary intakes both to achieve greater balance

56

# !
and to avoid excess would be useful to some consumers. However, such dietary guidance is immediately threatening to certain private interest groups in industry and to some programs within Government because it is more specific and may lead to eating less rather than more of certain types of foods.

In addition, complete consensus about every item in Dietary Guidelines

is lacking, and controversy exists over issues of health promotion and diet- related disease prevention in the scientific community (46). Scientific knowledge in the field of nutrition is expanding rapidly, but findings, particularly on the relationships of c.iet to health, are still controversial. Nevertheless, the pros and cons on disputed question. - can be described, and recommendations can be made for those who wish to follow the

findings that may be beneficial and that will not be harmful to health. Because of the differenc's of opinion within the scientific community, the potential oppositica of some producer groups, and the growing

sophistication of consumers about food and nutrition, Government's role

in nutrition education has become more complex. A single message or

food guide that will meet all of the public's wants is no longer appropriate. Government and other nutrition education efforts are confronted with the

task of presenting the best available guidance and helping consumers distinguish between findings that involve differen degrees of scientific

certainty. As scientific knowledge increases, the nutrition message content may become more definitive, but in the meantime Government has a

responsibility for evaluating and presenting information on what is known. At the same time, dietary guidance must be presented in ways that take into account individual wants and lifestyles while stressing the

importance of some practices that can promote health and help to prevent certain diseases, such as increased physical activity, moderation in the use of alcohol and tobacco, and consumption of appropriate diets. (2) Organization. The present organization of Government's nutrition

programs is such that legitimate scientific disagreements are sometimes magnified by interagency and interdepartmental rivalries or even personal disputes between a few scientists. In addition, each agency has a tendency

to regard the problem in the broader context of its overall mission. Thus, research-oriented programs insist that more research needs to be done; food-production-oriented programs emphasize that a minimum of disruption in the food supply system should be a criterion in establishing

guidelines; consumer- and education-oriented programs stress the urgent need for practical advice; and health services agencies perceive dietary

guidance as only one of many health promotive behaviors. The Federal Government lacks a formal mecfmnism for reconciling

these legitimate but differing points of view. Ad hoc arrangements do exist but they do not furnish a permanent solutiort to the structural difficulty. To develop agreement on principles and consistent Government positions on specific issues, a formal means of evaluating controversial nutrition issues would be helpful. Several of the criticisms of Federal nutrition education and information programs will continue to apply because of the lack of such a means. These include the tendency to

emphasize familiar time-worn concepts such as the basic-four food guide and dietary variety and the dissemination of conflicting and inconsistent

1.".1

e

57
messages to the public while neglecting topics of greater concern to

consumers. The end result will be further public disinterest and confusion.

In the past few years, the executive branch of Government-took several

steps to overcome these organizational problems. The Department of

Health and Human Services formed subcommittees on dietary goals and

nutrition education within its nutrition coordinating committee. It has

also issued several guides to organizing child health services, which

include attention to nutrition (47, 48). The USDA's Nutrition Policy

Coordinating Committee developed an inventory of nutrition education

and information activities and programs_ An interdepartmental task force

of the Nutrition Policy Coordinating Committee on USDA and HEW was

appointed and issued Dietary Guidelines (46). Finally, a formal mechanism for coordinating nutrition-research-related issues is now planned,

which will include the Office of Science and Technology Policy subcommittees on food and renewable resources and medicine and health. In

spite of these efforts, the resolution of major nutrition issues upon which

policy decisions depend and upon which nutrition education messages can

be developed has been slow. It took 3 years of meetings at all levels of

Government to develop a clear statement on nutrition guidelines.

Inventories of USDA and DHHS nutrition education and information

activities are still incomplete and disagreement continues on nutritionresearch-related issues. Therefore, while these initiatives may have been

useful and are better than nothing, their pact and effectiveness leave much

to be desired.

(3) No comprehensive strategy or national policy exists for nutrition

education. The current patchwork program approach results in an overall

effort that does not serve the majority of the public and that leads to

occasional duplication and overlapping. Formal mechanisms for coordinating Federal nutrition education efforts are lacking even for programs with similar goals. An even more serious problem is the lack of

coordination between Federal, State, and local efforts. In addition, public

programs are poorly integrated and coordinAted with private and

voluntary efforts at the national level and also frequently at State and

local levels. This lack of a comprehensive strategy has led to the following

problem. (4) A lack of evaluation and knowledge of the effectiveness and

efficiency of Federal nutrition education programs is apparent. Realistic

estimates of the number of people being served, actual nutrition education

expenditures, or the effects of the programs on participants are few in

number. Only a few programs completed such studies until a few years

ago. Three positive examples that date from the early 1970's are the

following: the evaluation of a television film series entitled Mulligan Stew

produced by the EFNEP, other rather limited evaluations of the LFNEP,

and the various studies that evaluated tic, r::;trition component of the

maternal and infant care projects. The NET program is currently

conducting an evaluation of some projects. The WIC program also

evaluated some aspects of its nutrition education activities in the mid1970's, and because of the negative findings, it has strengthened the

education components of the program. The Child Care Food Program and

Head Start are also being evaluated, and the nutrition education

58

*7.1
components of these programs will be examined. The extension programs are also undergoing evaluations of a less formal nature. However, few if any evaluations of the nutrition education activities in the large multiservice education and health programs under the aegis of DHHS and

the new Department of Education have been attempted, nor have most of

the evaluations of school lunch or breakfast feeding programs for children

focused on the possible nutrition education effects of the programs. Thus, it is difficult to judge the overall impact of '-=ederal nutrition education

programs on children. The very programs that remain unevaluated in this respect are some of

the most costly Government nutrition programs. Although most of them

have mi...11.iple purposes, their size and reach makes it imperative to

determine if they do in fact have viable and 4.--frective nutrition education

components. If they do not, the development of education components for enhancing their effectiveness and efficiency should be considered. (5) Nutrition information programs are often unresponsive to public need. Government nutrition information programs are characterized in

the President's Reorganization Project report as operating on an "offer"

rather than "serve" philosophy. That is, the type of information that was offered and the way in which it was offered did not serve the majority of

the public well. The information was disseminated in a manner that reflected the regulatory, research, or other missions of the program

involved rather than the concerns of consumers. The materials that do

exist are rarely publicized, and few consumers are aware that information

is available. Information is provided chiefly in response to requests from

the public and indirectly relayed through food, education, and health

specialists. For most consumers, Government-sponsored information is difficult to find. In part, this may be due to Government's failure to utilize other information channels such as the mass media, newspapers, popular books, and magazines for furnishing food and diet information and

guidance. In contrast, other sources of information, such as advertising messages and promotional material from industry, are well financed and widely available. The content of Government-sponsored nutrition publications is often out of date, neglectful of controversial subjects, overly general and

simplistic, and sometimes inconsistent in the concepts presented. In

addition, the formats frequently suffer from poor design and the materials are often poorly written. Finally, while some topics are not discussed at all, other materials are duplicated. (6) The reach of nutrition education programs for children is inade- quate. Formal education programs for elementary and secondary school children and other nonformal nutrition education efforts aimed at

improving the nutritional status of special groups of children reach only a

small proportion of their target audiences. They are usually uncoordinated

at the Federal as well as at the State and local levels even when they are provided in the same sites. Professional rivalries, disagreements on overall policies, goals and strategies and funding priorities foster the lack of coordination at all levels of Government. In addition, the multiservice nature of many of these programs makes nutrition education everybody's and nobody's business at the same time. Nutrition education is only a

59
minor component of education and multiservice health programs, thus

planning, budgeting, and monitoring of nutrition activities are often

overlooked. As a duplication of services and failure to reach the

majority of parents or their children are common.. (7) The research base for nutrition education is weak. The field of

nutrition education lacks systematic studies of efficient and effective

strategies. As a result, program decisions are often made on the basis of

convention, convenience, or the personal preference of the provider.

contents of the messages that are delivered also vary greatly and often

reflect the same rationale rather than the needs of the target group.

Two kinds of data are necessary for improved services. First, the needs

of children for nutrition education must be assessed. These needs vary

from one group of children to another by such factors as age, family

income, and education, and special physical or social characteristics of the

children and their families. No overall formula applies to all children.

Second, messages or combinations of messages and other services

(including, but not limited to, nutrition) must be developed and tested for

their effectiveness in meeting the needs of children in these various groups

and remedying the problems that exist. Although there are various sources of data for conducting needs assessments (such as those discussed in section I of this report and

additional information available elsewhere), relatively little information is available on how best to put these elements together into effective

programs or what the trade-offs are for different combinations of services.

Systematic studies of such issues as the factors that influence the dietary

practices of specific target groups, the effectiveness of different methods in

maintaining good dietary practices, and the cost effectiveness of different

information and education approaches are urgently needed.

Studies of program effectiveness are also needed. Issues to be addressed

include the level of effort needed to achieve minimal changes in the

dietary behavior of specific target groups of children and better determination of points of diminishing returns (i.e., number of classes, home

visits, or program "exposures"). Among several options, the President's Reorganiz' ation Project's Food

and Nutrition Task Force recommended that nutrition education be

consolidated on the basis of the target groups served by each department.

It was suggested that USDA take responsibility for nutrition education

and information provision to the general public, day care, elementary and

secondary school programs, and community programs for low-income

and other special groups. In addition, USDA would be given operational

responsibility (with technical assistance from DHHS) for developing

nutrition guidelines and food and diet guidance materials, assessing the nutrition education needs of the general public, and research on

improving nutrition education and information. The nutrition education

activities of DHHS would consist of those for preventing or treating

specific diseases or disorders and those for dealing with nutrition as part

of individual health services in the community. When these recommendations were made, the Department of Education "nad not yet been

established and its responsibilities were not delineated in the recommendations. The difficulty with this division of labor is that neither agency has

60
been singled out with a specific mandate for preventively oriented

nutrition education.

The recommended option was not implemented_ In the 3 years since the

report was published, some steps have been taken to coordinate nutrition

education and information activities in existing agencies and to explore

the possible roles of the Department of Education. However, a number of problems remain_ Consensus on nutrition education's content ar.d messages is still lacking. Committee planning and approval procedures have caused lengthy delays. The problem of gaps, overlaps, and the overall lack of a comprehensive Federal policy and strategy for nutrition

education remains_ Research on nutrition education remains fragmented

and is modestly funded, so that policymakers still have little basis for selecting their nutrition education strategies. Program personnel receive

conflicting directives and are confused_ Apprel tnsions about the future

role of the Department of Education are apparent among some USDA

and DHHS program personnel_ The DHHS rightly appears to be reluctant to settle for an organizational solution that would deprive it of the opportunity to provide nutrition information and education to the general public except for that directed at preventing or treating specific diseases or disorders, yet DHHS has not seized the initiative in the area at the program level in health promotion through diet.. The Surgeon General's

report Healthy People stresses the multiple combined factors that are

involved in disease causation (including diet), the need for health

promotion rather than disease-by-disease curative approaches, and the

importap:e of multiple and coordinated interventions to prevent illness and preserve health. Such a holistic view of the continuum between health

and disease emphasizes the positive aspects of individual behavior in promoting health rather than concentrating on the negative or risky

behaviors that must be avoided to prevent disease_ From this perspective

it is difficult to separate health promotion from disease prevention and

diet-related behaviors from other health-promoting and disease-preventing measures, which affect the samr. diseases. Given such a concept, there

is room for be th agencies as well as the fledgling Department of Education to become more active at the program level_

NUTRITION EDUCATION MANPOWER

The many professionals who are being trained specifically in child

nutrition are difficult to identify and enumerate_ Except in a few instances, as is the r of those specializing in nutrition training in programs that are known to be devoted primarily to children, the extent of child

nutrition training is conjecturaL The quality and type of instruction provided is also unknown. It is hard

to tell whether it emphasizes primary, secondary, and tertiary prevention, or whether it deals with public health or solely with "normal" child

nutrition, to the exclusion of other issues. It is doubtful that existing

training programs emphasize nutrition and health promotion, disease prevention, and the specialized needs of some children. These issues are

important for the training of those who are not closely associated with

61
health care resources, such as those who will work in schools, the

extension service, and food services. s more and mord!, children with

special problems are "mainstreamed," into schools rather than institutionalized or confined to their homes and special schools, the need for special

nutrition services has increased even in these settings. In addition, few specific training programs could be identified at the

graduate level that provide both rigorous training in the nutrition and

health sciences and communications skills that are necessary foz improving the quality of services provided by nutrition education professionals. The various individuals who must later function as a team providing

nutrition and related services to children currently receive training in

widely disparate educational settings. Interdisciplinary training appears to

be the exception rather than the rule_ Another unanswered question is the extent to which programs that provide training in child nutrition complement and supplement one another. A positive example is short-term training of professionals working in a variety of programs funded by many different sources in

infant nutrition at the University of Iowa Medical School_ This has been

sponsored for many years by the Bureau of Cominuaity Health Services,

DH HS.

The content and quality of child nutrition training in university-based

degree programs appears to have a number of gaps and shortcomings_ The

contents of on-the-job training and short courses are likely to exhibit the

same weaknesses because those who teach them are ill-trained themselves.

Many of the Federal programs that deliver nutrition-related services to

children have short-term training courses for aides or paraprofessional

assistants, which are provided as part of "on-the-job" training. Such is the

case with EFNEP, child nutrition programs, and Head Start, for example. Even when those who provide this training are well trained themselves,

their other duties and lack of appropriate training materials make the task

difficult In the past few years considerable progress has been made in

upgrading and expanding training materials and in the development of performance standards for evaluating some of these programs, and those

who provide the training have received additional inservice education.

However, training staffs are usually too small for continuing and ongoing

training of the teachers and aides on a regular basis_

The same problem exists among professional staff in the training field_

Because many of them are members of professional organizations that

require continuing education for maintenance of credentials, incentives

exist for keeping up to date. However, continuing education in child

nutrition is not always available_ Some nutrition service programs must rely on other sources or local

resources for training materials. For example, the Indian Health. Service's

training programs do not have specific funds that are earmarked for

materials, and those that are used must be borrowed from other

community resources or provided by staff members themselves- Other

nutrition service programs, such as the WIC program, have no specific

funding for staff training and rely on other Government agencies and

sources not only for materials but also for continuing education. The

62
instruction they receive may not be tailored to their needs or to overall progam goals. A major difficulty is how extension or EFNEP personnel cope with

individuals who require therapeutic diets. The usual response is to refer the problem to nutrition specialists in other programs. However, such

specialists are often not available. The answer is better distribution of nutrition specialists and health care services in underserved areas and removal of barriers to reimbursement for nutrition services. In the

meantime, however, stop-gap arrangements must be developed.

Manpower

Among those who by virtue of their training, interests, or work are

identified by others or identify themselves as nuL-itionists, it is immediately apparent that the type and level of training they have received, their academic degrees, their knowledge and skills, the focus of their interests, and their perspectives on nutrition vary widely. Moreover, even within

most of the specialties, skills and competencies vary greatly because

standards for training are not uniform. The Department of Labor employment statistics do not specify nutritionists and the related

categories mentioned in this section. Therefore, informal estimates of professional associations must be relied upon. Even using the most liberal estimates, fewer than 100,000 persons are engaged in these activities on a

paid basis. Greater than I5 percent of these persons possess baccalaureate degrees or less and are employed as dietitians, diet technicians, food

service workers, or home economists. Not more than 5,000 of them hold a

doctorate or equivalent degree in the field of nutrition. A small and

unknown number of these persons devote most of their time to child

nutrition.

Parents

In enumerating those who are concerned about child nutrition, it should be remembered that probably the largest group of dedicated individuals are parents. Like professionals, their concern for child nutrition stems

from more than simply a legal responsibility or need to gain a livelihood. Moreover, they have more influence and experience in the feeding of their

individual children than any other group of personnel. Therefore, they are

inc:T.zded first on the list of those who play a major role in the provision of ntraition services to children. In many instances there is only one parent in the family, and in most instances formal education in nutrition is

limiter, although many have developed considerable nutrition knowledge

-And skill.

Nutrition Research Scientists

Nutrition research scientists usually hold a doctoral degree in some

biological science such as biochemistry, physiology, animal science, or

human nutrition per se.

3
Some nutrition scientists hold degrees that are specifically in the fields

of nutrition or public health nutrition. Usually the degree includes

considerable coursework in nutritional biochemistry and the biomedical

sciences. Others hold degrees in biology, physiology, or biochemistry, with

the latter group predominating. Biochemists study the biological structure

and metabolism at the cellular and subcellular level and concentrate on

problems such as dietary requirements for cell maintenance and identifying the chemical and physical structure of nutrients, their functions

within the cell, and more general metabolism within the body. Some physicians are engaged in biomedical and clinical research

relevant to nutrition and focus on basic and applied issues. Many animal

scientists have developed an interest in human nutrition problems through

their work with animals in the study of human disease and comparative nutrition anc animal health. Others, such as food scientists or food

technicians and economists, may also participate in nutrition research.

None of the professional groups specify the courses that are required for

the doctorate in human nutrition. Requirerne: .Z.s vary greatly from one

institution to another, although all institutions require graduates to

demonstrate the ability to conduct independent research. Estimates of the existing number of nutrition research scientists range

from 2,000 to several thousand persons. The American Institute of

Nutrition's members have made significant contributions to nutrition

research, most of which is probably relevant to humans. Membership in

1977 was 1,730_ The American Dietetic Association's members included

764 whose orientation was primarily research_

In 1976 the USDA's Federal and State experiment stations devoted 194

scientist-years to human nutrition. In 1979, 267 scientist-years were spent

on research in human nutrition (49). In 1977, the National Institutes of

Health (NIH) devoted 70 scientist-years to human nutrition research with

1,980 intramural investigators participating in these studies, 20 of whom

were fornially trained nutritionists. In addition, NIH supports several hundred extramural nutrition research persons through grants and

contracts. In 1977 the Department of Defense had 20 lead scientists with

doctoral level training who were engaged in human nutrition research.

In 1978-79, approximately 50 institutions awarded doctoral degrees in

human nutrition and 40-80 new scientists enter this field at this level each

year (49). Approximately 75 institutions offer master's degrees in human nutrition. Most of these programs are in land grant universities. Estimates of

the numbers of new graduates are not available, but probably amount to

several hundred persons a year, some of whom choose research careers.

Public Health Physicians and Dentists

Training in public health varies. The most common type of formal

education is that leading to the Masters of Public Health (M.P.H.), which

is granted by approximately a dozen schools of public health in the

country. Both "ge..n.n-alist" programs and programs that focus on a specific

area (such as nutrition or maternal and child health) are available_

64
However, the majority of physicians and dentists who work in public health or community health positions probably do not have such a degree. They may have gained experience "on the job" or because of a personal

interest in social medicine- However, their competence is highly variable. The United States is estimated to have more than 1,500 public health nutritionists, 40 percent of them with master's degrees. The number of public health physicians and dentists with specific expertise in child

nutrition, including M.P.H. degrees, is extremely smallprobably less

than a hundred. There are perhaps 10 times as many in the more general area of maternal and child health. They usually have at least one graduate

level course in maternal and child nutrition.

Public Health Nurses

No data arc available on numbers of public health nurses with nutrition

training. The extent of training of these persons varies. The formal academic degree in the field is the M.P.H. Some nursing schools have master's programs that include substantial study in public health. Finally, there are various short courses and training in public health fc+r health

nurses with bachelor's degrees or diplomas. Very few of these programs have more than very basic courses in nutrition (often taught as part of a larger course), but most programs devote considerable attention to

maternal and child health.

Public Health Nutrige.nists

A public health nutritionist is prepared by training at the master's level or above to provide all types of nutrition services in community health

programs. Major responsibilities include, planning and implementing the nutrition component of health care programs, recruiting, training, and

supervising subordinate nutrition star coordinating nutrition with other care components, and evaluating the effectiveness of services. Public health nutritionists usually receive master's degrees in schools of public health where they have specialized the study of nutrition. Their undergraduate degrees are usually in one of the biological sciences or in

food and nutrition at a college of home economics. In some but not all programs field training is required. These individuals have no registration

examination, although an accreditation process is sponsored by the American Public Health Association for the schools of public health that

the nutritionists attend_ Persons with M.P.H.'s in nutrition have had fairly standardized

training. Programs generally follow the guidelines of the Association of Faculties of Graduate Programs in Public Health Nutrition. Requirements vary depending upon whether the career focus is upon medical public health or university teaching (50). Sixteen institutions offer graduate degrees in public health nutrition, and two of these also offer doctorates.

In the past few years, a number of new schools of public health, which

sometimes include nutrition curricula in their programs, have been

65
established. Also, several bachelor's degree programs in public health

nutrition and community dietetics have opened. Many of their graduates

work in public health settings. although the numbers are small as yet for

those engaged in public health nutrition. Registered dietitians are another

large group who often regard themselves as public health or community

nutritionists and who work for public or voluntary health agencies. Some

450 members r)f the American Dietetic Association are employed in such

settings.

Physicians Specializing in Clinical Nutrition and Other Aspects of

Him 211 Nutrition

Physirianc who specialize in clinical nutrition have usually received in

addition to their basic degree in medicine, residency training, board

certification in some specialty. such as internal medicine, pediatrics,

surgery, or preventive medicine, and some on-the-job training in nutrition.

Formal education in the nutrition sciences is often lacking. Occasionally

they also have obtained certification by the American College of

Nutrition, a revivified professional accrediting organization. However.

many senior level clinical nutrition specialists are not certified by this

body and are more closely associated with the specialities in which they

received the most of their training. Physicians with an interest in clinical

nutrition are often members of the American Society for Clinical

Nutrition if they are interested in research or the American Society for

Parenteral and Enteral Nutrition if their interest is clinical in nature.

There are probably only a few thousand physicians with special training

or experience in clinical nutrition among the 350,600 M.D.'s and 12,100

Dia's in active practice in 1974 (5 1 ). Other physicians specializing in basic r:trition research are generally

board certified in some medical specialty and have additional formal

training or experience involving human or animal nutrition research.

Occasionally they may have obtained a higher degree such as a master's or

doctorate in nutrition, public health, or biochemistry. There are no firm

estimates of their numbers but it is doubtful if they exceed a few hundred

at most.

Nurses Speciaikring in Clinical Nutrition

The handful of nurses who specialize in nutrition are trained in a variety

of ways, but mostly inservice rather ihan formal education. For example,

many nurses acquire considerable experience in nutrition because of their

work on nutrition support teams. In the past few years a number of

clinical nurse specialists programs have sprung up. Some programs consist

of only a few mc,nths' training, others are master's programs of I or 2

years. A few special programs in midwifery are also available. These

programs usually include Tome study of nutrition, but often it is minimal

and only rarely is the cots se content equivalent to a graduate level or even

an advanced undergraduate nutrition course. Clinical nurse specialists can

also obtain master's degrees in nutrition or foods and nutrition, but this

option is rarely chosen.

66
Dietitians specialize in planning balanced and nutritious meals anti provide education and diet therapy for those referred to them by

physicians. Federal estimates of dietitians and nutritionists employed in the health feld in 1974were 48,000. Among the 23,000 members of the American Dietetic Association, in 1971 approximately 71 percent held bachelor's degrees, 23 percent master's degrees and 2 percent doctoral degrees, and 90 percent were

registered dietitians (52). The majority (65 percent) were employed in

hospitals or other health care facilities, 5 percent in public health agencies, 9 percent each as teachers or food service managers in educational

institutions, and the remainder in Government and business. Currently, active membership of the American Dietetic Association is 31,000.4 An

additional 24,700 persons were employed as dietetic technicians or food

service supervisors who were not dietitians and usually had received less formal training than the bachelor's de?-ee.4 Most of the practicing dietitians in the country receive undergraduate deg yes in home economics at land grant or other State universities. Those

wto major in foods and nutrition generally have stronger preparation in

the biological sciences than those who major in home economics, food

services, administration, or institution management. Until recently, a yearlong internship was required in a teaching hospital or other accredited health-related institution for membership in the American Dietetic Association, and registered dietitians were required to pass a registration

examination_ Now it is possible to complete all of these requirements any to qualify for registration in a coordinated undergraduate program of 4 years that offers clinical or applied training and classroom work. Five- and six-year programs also are available, although there is a growing tendency for them to become internship-master's degree programs. Programs at both the undergraduate and graduate level are becoming

increasingly specialized, and community, clinical, or administrative

specialities_ are now required for accreditation by the American Dietetic Association. Programs must declare the types of personnel they are training, meet standards set down by the accrediting association, and undergo periodic reviews. The homogeneity of dietetic training for the BS. degree in foods and nutrition is greater than that for those who elect ,Cher vocational tracks. However, considerable differences in focus exist even at this level, especially in the quality and intensity of training in the biological sciences

that students receive. In general, those who elect clinical dietetics receive

training in biochemistry, physiology, and metabolism and have the most intensive health sciences preparation. Programs for administration concentrate upon the management of food services and associated operations, with greater attention to management and lesser empnasis on food and

nutrition, and usually exclude biochemistry and other advanced courses in

4W. O'Connal. personal coeminunication from an American Dietetics Asacc:ation staff person

specializing in mesnberskip. January 19110.

67
hunsan nutrition. Community nutritionist training is sometimes a combination of the two or emphasizes basic knowledge in food and nutrition

without biochemistry but with additional coursework in education and the

social and behavioral sciences.

Notrition Edncation Specialists and Community Nm.ritionists

(Bachelor's and Master's Degree Levels)

An estimated 5,000 to 10,000 nutrition education specialists and

community nutritionists exist with perhaps 5,000 employed as such today

in the country. The Society of Nutrition Education has about 5,000

members.

Nutrition education specialists and community nutritionists are trained

in any of the fields mentioned previously with some special preparation

for teaching nutrition. Most nutrition educators hold at least a bachelor's degree with a major

in food and nutrition or more general programs such as home economics,

education, or science with at least one course in human nutrition at the

undergraduate level. Some nutrition educators have additional training as

dietitians or hold a master's degree in foods and nutrition, nutrition

education, or nutrition sciences. Most nutrition educators have basic

knowledge in food and nutrition as well es education, evaluation of

education programs, and the behavioral sciences. "Community nutritionists" usually have a special interest in community health or education

programs.

Home Economists

Home economists are individuals who have received at least a

bachelor's degree at 1 of the 300 institutionsin the country that offer such

programs. Most of these programs are located in land grant colleges and

State university systems, and only a few privately sponsored institutions

have such programs. At least 160,000 home economists are thought to

exist in the country- The American Home Economics Association

reported a membership of 43,000 in 1978.5 Of these, 8,880 individuals in

1978 and 8,300 in 1979 were affiliated with the food and nutrition section,

and presumably majored in these subjects as undergraduates. Approximately 20 percent of the home economists work as elementary and

secondary school teachers, 8 percent in the extension services, 5 percent in

human services, 11 percent in colleges and universities, 3 percent in

business, and the remainder in a variety of other settings.

Training in human nutrition is highly variable among those who hold

degrees in home economics; some individuals have considerable coursework in food and nutrition areas, and others have only a single basic

course.

SPersonal communication from the American Home Economics Association. December 1979.

68 c., 9
Diet Technicians, Food Services Supervisors, and Nutrition Aides in Other Programs

These persons are subordinate to dietitians or food service managers and 'work in food services delivery in institutions such as hospitals, schools, and day care centers. There are at least 30,000 diet technicians, food service supervisors, and

nutrition aides. In 1974, 24,700 of them were estimated to be employed in

the health field (51). In 1979, the EFNEP in the USDA employed some 3,700 persons as outreach work ers and teachers of basic food and

nutrition skills. A number of other Federal programs, such as Head Start, day care programs, and the him also employ persons who may have

received short-term training in nutrition. Approximately 11,500 dietetic assistants, most of whom were trained in community colleges, are also working in the health field (see footnote 4). Training among these individuals is variable, ranging from short-term

training courses and on-the-job training (as with EFNEP aides) to formal and specialized associate degree programs. The trend is toward associate degree programs, which are growing at a rapid rate in community colleges. With appropriate supervision, these individuals can perform many of

the routine tasks that are involved in dietary or food services delivery.

Adequacy of Manpower Supply

Opinion is sharply divided about the existence of a manpower shortage

that is inhibiting advances in nutrition education. The question has not been addressed comprehensively by any recent study, and reliable manpower training and employment statistics are not available. Therefore, a need for more data is indisputable.

Personal Health Services Versus Public Health Services

Personnel required for disease prevention consists of two major categories: those engaged in providing personal health services to

individuals, and public health professionals mainly concerned with the health of populations (53). The personal health manpower category is

judged to be adequate and includes physicians, dentists, pharmacists, podiatrists, nurses, physician's assistants, nurse practitioners and others working within the health care delivery system (53). However, the quality of services (especially nutrition services) is an issue and raises such

questions as how the personal health services delivery system car be

encouraged to increase its emphasis on disease prevention, what -..:31es should various health professionals play in prevention, and how the

education of health professionals can prepare them for their roles in

disease prevention. While some adjustments in the manpower pool might be necessary, considerable potential for disease prevention is untapped within the current pool. Making health promotion and disease prevention

a part of personal health services will require changes in the training of

69
health professionals, changes in the organization and financing of health

services, and changes in consumer expectations of health care. Nonphysiclans have a great deal to offer in disease prevention.

Nutrition Scientists

The Congressional Resez , ,.., e (54) and the General Accounting

Office (55) studies claimed sh .rtage of nutrition scientists existed,

while the Office of Science ,.. aology Policy (56) and the Office of

Technology Assessment (OTA) k -o) studies questioned this assertion. To

guide Federal policy in manpowertraining (57), the OTA report suggested

that a census be conducted of nutrition scientists, both working and in

training.

Public Health Physicians, Dentists, and Nurses

One report on health manpower has concluded that, compared with

personal health services manpower in general, professionals working in

disease prevention are in relatively short supply (53). The numbers and

abilities of those with child nutrition skills are relatively limited.

Public Nutritionists

There were 1,921 public health nutritionists at the local, State and

Federal levels in 1978 (50). Of these, 45 percent provided generalized

services; 32 percent were affiliated with the WIC program; 13 percent

served in public agencies, education, or voluntary agencies; 7 percent

served as administrators or consultants; and 2 percent in licensing and

certification; less than 1 percent is unaccounted for. A personnel shortage

appears to exist in this category.

Public Health Nursing

The shortage of r.,blic health nurses is less of a problem than is their

lack of expertise in nutrition. Public health nurses' training should be

modified to include skills for better identification and appropriate referral

e' ti-itional health problems.

....mile and Dentistry

uysicians (including pediatricians) who have expertise in cliz: -al

nu.tritIon are in short supply, and the basic level of skill in nutrition is low

fo. physicians in general. Training in pediatrics and family medicine tends

to pay somewhat more attention to nutrition than do .:then subspecialties..

A number of physicians are now being trained in clinical nutrition, but

better training in nutrition is still needed for physicians.

Nursing

A serious shortage of nurses with specific -.7..xpertise in child Jautrition

s to exist. None of the major professional r...J.trition associations has

70 4
more than a. handful of registered nurses. In nursing schools. if nutrition is

taught at all, it is usually incorporated into a medical-surgical nursing

course er taught separately to nurses by a dietitian rather than by nurses themselves, perhaps indicating that very little nutrition expertise exists among nurses. With over 1,000,000 nurses in the country, this lack is

striking. Specialists in maternal and child health nursing tend to be better trained in nutrition than other nurses, but even at the master's degree

level, preparation is weak, consisting of a course or two at most.

Dietitians

Opinion is divided on the need for additional dietitians. The American Dietetic Association argues the need for more personnel at both the

registered dietitian and dietetic technician levels. In contrast, Yoder's more general analysis of manpower for the personal health care category, which includes dietitians, /id not reveal shortages, although the basis for

this conclusion was not stated (53). The issue hingc; primarily on what

services physicians wish to delegate and what they wish to di,. themselves. At present, there is increasing emphasis on physicians' ta:ring rtsponsibili- ty for providing nutrition counseling of ambulatory pants in such

specialties as family medicine, general medicine, and pediatrics, based in

part on new views of the importance of these and other lifestyle topics in health and in part on the predicted surpluses of physicians in the next

decades. These issues and the costs of various alternative providers need

to be sorted out before sensible manpower planning can be done in

dietetics.

Nutrition Educators and Home Economists

Little information exists on the adequacy of supply of nutrition

educators and home economists. The Society for Nutrition Education

states that shortages of appropriately trained people are evident.

Quality of Training

Opinion is also sharply divided on how well students are prepared for dealing with current nutrition problems. The evidence is good that, in

some areas, reorientation is long overdue and that training programs are out of date. The disputes center less on whether to incorporate new material and courses into existing curricula than on now it is to be done.

The difficulty is in deciding what current studies are to be eliminated to

make room for new courses and emphases.

Training for Research

The Office of Technology Assessment report (28) suggested that

training methods were of equal if not f meter concern than the number of

persons trained, because the develop of knowledge in the 1980's is likely to _quire different skills than those required traditionally. The

report specifically suggested that doctoral training in the nutrition sciences

71
and related disciplines should stress diseases affected by diet, nutritional

pharmacology, the principles of food science, and evaluation and

assessment of nutritional status. Public health nutrition research should

place greater emphasis on nutrition-related fields such as epidemiology,

behavioral sciences, health services administration, nutrition policy, and

community organization without losing its strong basic core in the

nutrition sciences. The report also recommended that postdoctoral

training should include clinical or community work and exposure to the

diet-related health considerations of both healthy and ill persons.

Training in Public Health Nutrition

The major problem in public health nutrition appears to be lack of

personnel rather than inappropriate training. However, training might be

helpful in skills for assisting those who are not nutrition specialists, such as

nurses, to identify and deal with nutrition-related problems. There should

also be greater emphasis on recruiting and training individuals who wish

to work in medically untlerserved rural areas where needs for public

health nutrition services are particularly great. Needed skills include

clinical dietetics as well as public health, since the individual may have to

serve as a backup consultant for others providing personal health services.

Nutrition Training of Physicians and Dentists

Thanks to the recent emphasis on the importance of basic clinical

nutrition skills for physicians, some progress is being made. However, in

most medical schools, nutrition is still treated perfunctorily and relegated

to elective status or an occasional related lecture, and it is generally not

regarded as important enough to merit an alteration in an already

crowded curriculum Greater emphasis in undergraduate medical education should be put on both the knowledge base (e.g., nutritional

biochemistry and physiology) and clinical -,--actice in nutrition to improve

patient care. One of the major difficul Ampeding the training of medical

students is the lack of qualified faculty. In addressing this problem, the

Nutrition Cluster Report of the President's Biomedical Research Panel

suggested that 25-40 postdoctoral fellowships per year in clinical nutrition

be granted to promising young physicians (58). The same report

recommended that Federal funds be provided for the creation of 10-15

faculty positions in clinical nutrition across the country within key

medical schools. After a limited period, support would be furnished by the

medical school or teaching hospital. Many of these ideas have been

incorporated into the clinical nutrition research unit concept first funded

in 1979 by NIH. These units are designed to provide a base for clinical

nutrition research, to teach meelca1 and other students in the health

professions, and to provide community services within academic medical

centers.

The undergraduate curriculum in dentistry should include more

emphasis on clinical nutrition and prevention-oriented nutrition which are

relevant for dental practice.

72
The new emphasis on primary care in medical schools is commendable, but as it is currently visualized, it is doubtful that either the competencies

in dietary treatment (as opposed to diagnosis) of the average physician or

their geographical distribution will be such as to allow dispensing with the

services of dietitians and nutritionists. Therefore, rr Anpower planning

exercises, which make such assumptions, are unlikell, to be fruitful. They may well add to, rather than subtract from, the costs of delivering health

care services involving nutrition, and the services that are provided may be of poorer quality unless more attention is paid to clinical nutrition

treatment issues and appropropriate referrals to allied health professionals

in revised curricula.

Nurses

Clinical nutrition appears to have disappeared from nurses' training

since the curriculum reforms of the 1960's and 1970's. Training should

include nutritional status screening and referral procedures for patients suspected of being at high nutritional risk. Nurses, not physicians or dietitians, are the most likely to have frequent and intimate contacts with

patients. which permits them to identify frequently subtle nutritional problems. Nurses are also in an ideal position to reinforce and monitor any necessary nutrition interventions. It is time for nursing schools to

strengthen their human nutrition components. "Out-breeding"that is, training future faculty members outside of nursing schools in nutrition

sciences, clinical nutrition, and public health nutritionis needed because at present the nursing schools lack the faculty to do the job themselves.

Dietitians

Fundamental biomedical knc 'edge and new technologies must be

transferred into training and clir .3.1 practice. More emphasis should be made on disease prevention through better screening and case funding. The dietitian is now frequently charged with screening hospitalized and ambulatory patients to identify those who are in need of further assessment and services. Once those at risk are identified, the dietitian must work with other health care personnel to provide appropriate

interventions. Nutrition support techniques employed today require a

much greater knowledge of metabolism, diet-drug interactions, and the underlying pathophysiology of the illness and more teamwork in the prov;sion of care than dietetics did a decade ago. These trends are likely to

continue.

More instruction on prevention of the most common diet-related

diseases and conditions should be also encouraged in the training of dietitians, especially those who plan to practice in ambulatory settings. Basic concepts of epidemiology and risk should be emphasized in the

community dietitian's training to focus on the many in need of services. dietitians need more training in group teaching methods with

regard to such subjects as diet, drugs, exercise, and smoking. Although

individualized dietary counseling will always be necessary for some

73
patients, dietitians have not yet tapped the potential of group approaches

to teaching for some diet-related health problems. It is essential that future

physicians become better trained in recognizing nutritional problems and

referring patients who require dietary therapy.

Home Economists

Home economists oftefl lack the specialized expertise necessary to

interpret technical research to laymen and deal with large numbers of

people who rarely encounter other nutrition specialists. They often do not

have appropriate information because of the failure of the nutrition

science a 1 clinical community to transfer such information effectively.

Given sucn information, home economists are able to package and shape

it in the form that is most relevant and appealing to their audiences.

Training needs are twofold: stronger preparation in the nutrition sciences,

and greater attention to information transfer through group and mass

media methods.

Associate Degrees

The training of associate degree level workers is r standardized and

usually takes place in technical institutes of commuru zy colleges that are

quite separate from the institutions in which other nutrition professionals

are trained. Such separation makes it difficult for new developments to be

incorporated easily into training curricula, unless a conscious effort is

made to bring instructors in associate degree programs into the larger

academic community instead of regarding vocational instruction of this

type as a totally separate activity. At present, persons trained in such

settings are ill equipped to deal with clinical nutrition issues in situations

in which supervision is inadequate or sporadic, as it sometimes is in

nursing homes or other extended care facilities.

Primary and Secondary School Teachers

The vast majority of primary and secondary school teachers have had

no formal training in either general nutrition or child nutrition. The only

likely exceptions are teachers of home economics or health education at

the secondary level. Some primary school teachers have taken short

inservice courses in nutrition, but this is hardly a substitute for formal

education. Well-taught courses in child nutrition at teacher training

institutions are urgently needed.. In addition, most school systems do not

have nutrition education specialists available for consultation with

classroom teachers, nor are such specialists always available at the State

level. The USDA's NET program has funded some nutrition education

positions as well as short courses for teachers and the development of

nutrition materials for classrooms, but a great deal remains to be done.

Other programs, such as the USDA's child nutrition programs, have also

developed short courses for the training of school food service personnel,

but most of these persons do not teach in the classroom. Some funds were

74
made available by the Office of Education to carry out inservice workshops and curriculum development efforts, and private groups such

as the National Dairy Council have also sponsored a variety of short courses for teachers. Funding tends to be sporadic, however, and no

efforts to date have led to mandatory training in nutrition for teachers. In the past few years, some States have legislated that health education

(which usually includes nutrition) be taught as a required subject in the schools. This requirement may strengthen the case for including a

required nutrition course at the undergraduate level in teacher training.

An Example: Ways to Strengthen the EFNFP in Child Nutrition

The Expanded Food and Nutrition Education Program of the USDA has lately been the subject r." a number of -tudies (57, 59-66). The EFNEP might be strengthened through more inservice education for the home economics extension agents, who are the trainers of the aides. Specific training geared to chilci nutrition might be developed by the national office, utilizing some of the excellent self-study texts, movies, and other materials that have already been developed by many of the State extension service offices and that should be more widely disseminated. Collaboration among DHHS, USDA, and voluntary agencies in developing the training program would provide the means for corrhining the most effective program content with the most effective means of communication. Special attention should be given to appropriate sources of referral for health problems and to develop a more simplified kit of training materials for program aides in EFNEP. Once developed, these materials could be disseminated to the States for use as the of inservice

education for extension home economists. Chief food and nutrition

specialists and other relevant health professionals can also be enlisted as

visiting faculty.

A second way to strengthen the program would be change the system of recruiting families for the EFNEP to ensure that the neediest families are the first to receive attention. Public health and welfare referrals could become the source of outreach information as well as provide necessary

backup services. Supervision, however, would remain with the extension home economists.

A third way to strengthen the program is through training to increase

the skills of the extension food and nutri tion specialists by recruiting those with expertise in child nutrition or encouraging existing staff to take

courses in child nutrition.

Resident faculty at the land grant colleges and universities might also

receive additional training in child nutrition, and more research monies

might be devoted to research in this area. Human nutrition research at the USDA is funded at $36 million (80

percent USDA Federal funds), and 267 scientist-years are in 386 research projects. Extension programs are funded at $59 million, and 1,654

professionals and 3,718 paraprofessionals (most of whom are -oncerned with EFNEP) are employed. These data suggest that findings from

nutrition education research programs would find a ready audience.

75
At present the USDA has no specific program for training nutrition

scientists for nutrition Aucation research, applied purposes, or specifically for training in child nutrition.

Training Issues: Basic Versus Applied Training

and Education

The appropriate mix of theoretical and applied training for nutrition

research, teaching, and service delivery is a matter of some dispute. The

type and amount of education varies from one subspecialty to another,

but also within specialties. Existing reports on manpower do not deal with

these issues in depth as they affect the nutrition field (58, 67-69). Some of

the newer studies begin to approach the problem (70), but collecting

statistics remains a problem (71). Approximately h. ,o.f of those with doctorates who work in nutrition

positions apparently were trained in nutrition departments in university

graduate schools (49). The others probably hold degrees in biochemistry,

physiology, and chemistry, and fewer have degrees in animal or food

sciences. Only a very small number hold degrees in economics or th

social sciences. Many nutrition positions are filled by persons with specific.

doctorates in nutrition. These scientists may be cut off from advances in

many of the basic disciplines (other than their more general area of

training) that would contribute to fundamental knowledge in the nutrition

field. The disadvantage applying to the other specialists with more basic

scientific training is their often extremely narrow perception of the field of

nutrition as a whole due to training that focused on only one clement

within the broader field. Perhaps collegial interaction will deepen the

former and broaden the latter, and the best solution is a mix ofindividuals

trained in many disciplines. The vast majority of those who hold master's or baccalaureate degrees

in nutrition are trained in nutrition or other "applied" fields such as

education or dietetics. In order for those with degrees in the liberal arts or

the biological sciences to obtain master's degrees in applied nutrition

(such as that required in dietetics, WIC; or the child nutrition programs),

they usually must do a great deal of "remedial" course work in specialty

areas. This lengthens the course of study and perhaps discourages some

bright young people from entering the field. This problem is particularly

true for those trained in the social and behavioral sciences, who find

making up courses in chemistry and physiology onerous. Flexible yet

rigorous programs are needed to overcome these obstacles.

NEW DIRECTIONS FOR THE 19809s:

THE NATIONAL CONFERENCE

ON NUTRITION EDUCATION OF 1979

In late 1979, major existing agencies concerned with nutrition education

sponsored a joint conference (40). Education, nutrition, and communica76
tion professionals as well as consumers pa: :;cipated in the conference deliberations and conference preparation.

. The recommendations of the task forces for each of the relevant target groups varied, but 10 issues of general concern were raised in all four

reports. These were as follows: (I) One of the goals -A' nutrition education should be the provision of

readily accessible info ',nation and public messages about the prevention of disease as well as the promotion of health through diet and the

treatment of illness and dietary support of medical treatment. (2) The pace of development of nutrition education messages for specific groups, outreach efforts, consumer protection, and greater use of

the mass media must be speeded up. (3) Consumer advocacy as well as provider advocacy is seen as

necessary to improve the status of nutrition education efforts. (4) Coordination must be improved between and within Federal departments as well as at State and local governmental levels and with

voluntary and private groups. (5) Training of those who train t nutrition educators is a necessary

first step for improving nutrition edu

(6) Financing of nutrition eduzation, including patient counseling, is also an essential prerequisite. (7) More research is needed on nutrition .education. (8) Nutrition education programs need to be evaluated. (9) Follov.-tup efforts to ensure implementation of the recommendations are needed.

(10) Linkages among nutrition education and food or income assistance and health and education programs are needed at Federal, State, and local levels.

The recommendations of the task force on children, adolescents, and

pregnant women were as follows: (I) Nutrition education needs a new orientation, both with regard to

message content and methods of delivery. MessageNutritionists and others responsible for nutrition education must reach a consensus on the basic messages that are relevant to each of

these target groups and acknowledge those areas in which controversy

exists if consensus is not yet possible. DeliveryWith the use of techniques based on market research, attitudinal and behavioral change should be promoted where necessary

among consumers and sound nutrition practices should be reinforced. Leadership Coordination and AdvocacyA federally supported national nutrition council of diverse membership should be established for a

3-year period and should invite participation of the private sector. Such a

council wou..1 provide leadership, serve as an advocate for nutrition

education, advise the Federal Government, provide a forum for exchange of information, develop policy, encourage and oversee coor6ir.^,tion of nutrition education, provide followup of the National Nutrition Education Conference, and monitor progress in implementing recomrnenda- dons.

(2) Nutrition messages must be matched with the perceived needs and

cultural, 'social, and economic characteristics of target groups.

77
(3) Nutrition education curricula for preschools, primary, and secondary schools must be evaluated and, if necessary, designed specifically for

the target group needs and perceptions.

Criteria must be established for assessing the scientific accuracy of food

message content, curricula, and training guides. The criteria should be

periodically reviewed by appropriate professional groups and updated

information disseminated.

The Federal Government should evaluate nutrition education materials

and curricula and share the results with State and local groups.

A common core of objectives should be addressed in addition to

ram specific activities. For each specific program, behavioral objectives -id performance standards must be established under the direction

of competent nutritionists and those from other appropriate disciplines.

All nutrition education professionals and paraprofessionals should have

access to inservice and continuing education. Nutrition educators need more training in processes that help people to

make informed decisions about choices of food other than the mere

distribution of information.

(4) More innovative use must be made of informal and nonformal

settings for nutrition education such as waiting rooms in health care

facilities, correctional institutions, recreational centers, libraries, food

markets, laundromats, beauty salons, and the workplace to reach children

and parents with nutrition education.

The Department of Health an(' Human Services should ensure that

standards and criteria for health (....are programs include specific requirements for nutrition services including counseling and education.

Greater emphasis on community participation and self-help in developing nutrition education programs is also needed_

(5) The mass media and other new technology should be used more

effectively to improve the image of nutrition and to initiate large-scale

change in attitudes about healthful eating.

Programs to supr,art general nutrition education efforts as well as

special nutrition messages for particular concerns or issues should be

developed by commercial as well as public service and educational

television. Priority should be given to developing high-quality nutrition

messages with a specific focus. A study of the feasibility of utilizing new technology for nutrition

education should be undertaken by the communications industry, and the

findings shared with persons in the nutrition and education fields.

(6) Evaluation of nutrition education should receive more emphasis.

Support services for evaluating nutrition education efforts should be

developed and expanded in collaboration with professional groups in both

nutrition and education. Nutritionists should receive training in evaluation during their formal education.

All Federal food and nutrition assistance programs including grantee

programs should require and fund evaluations. These include school

meals, Head Start, public health nutrition services, nutrition education,

and training programs. (7) Research in nutrition education must be expanded. The Departments of Agriculture and Health and Human Services must give priority

78
to research that will provide basic data and other information about target populations. Many other areas of nutrition education research need

attention. These include effective delivery methods and techniques, approaches to learning, appropriate packaging of nutrition knowledge for

specific groups, evaluating curriculum evaluation, changing childhood perceptions of the relationship between food, nutrition, and health, surveys on the food habits of ethnic groups, and epidemiological surveys

to identify the nature, magnitude, and location of nutrition problems so

that appropriate nutrition education can be developed. The two depart- ments should give high priority to implementing a cooperative national nutrition status monitoring system. All of the Federal agencies with

nutrition education programs must review their requirements for grant applications to encourage a comprehensive approach to the development, implementation. and evaluation of nutrition education research and

programs.

(8) The Departments of Agriculture and Health and Human Services along with other Federal agencies and organizations should coordinate their approaches to nutrition education. The National Academy of Sciences or some other agency could serve as a focal point for an

interdepartmental task force to identify priorities in nutrition education, obtain agreement on the messages. and coordinate agency responses. The Departments of Agriculture and Healtn and Human Services, as we!! as other agencies, if appropriate, should sponsor two or three

comnunity nutrition education model programs. These could then be

replicated in other communities. (9) Nutrition education needs more financial support. Federal agencies responsible for nutrition education programs or services should have

sound cost-effectiveness data, and if program funds are inadequate to

implement all nutrition education efforts, program administrators should

establish priorities for Federal fund grantees. Nutrition counseling services should be reimbursabk as a health care

service. Federal legislation and regulations should provide for such

reimbursement.

Today payment mechanisms for health services are such that thirdparty reimbursements for preventive services are kw in number and

nonexistent for many prevalent problems, such as obesity. Such payment schemes inhibit the provision of some necessary services. They probably

also limit the number of providers of some services. In 1976 the institute of Medicine recommended that third-party payers should pay for effective health education for their clients and preventive

services including those in nutrition. It was believed that such payment would. expand access to such service (70). As yet these recommendations have not been implemented.

CONCLUSIONS

The changes in societal and health problems affecting children call for new responses on the part of Government today (72-16). Federal

nutrition program success has been considerable over the past decade. But

79
because of outmoded message content, antiquated delivery systems, and

organizational problems at Federal, State, and local levels, nutrition

education components are greatly in need of improvement (77).

Nutrition education expenditures cons'itute only a small fraction of

nutrition program funds, or about S120 .pillion. This dollar amount is

several orders of magnitude less than the money spent on advertising and

promotional efforts directed specifically at children for the purrevse of

modifying food choices. The Federal nutrition education effort is

insufficient. Several critical weaknesses in existing efforts must be

remedied. Before additional funds are allocated on a large scale, pilot

programs must be mounted to resolve these issues:

(1) Confusion Regarding Message Content in General and for Specific

Target Populations in Particular. Confusion is rampant regarding the

message content of Government - sponsored nutrition education efforts for

children. Should they stress only sufficiency of food intakes o.. both

sufficiency and moderation? What special emphasis should be given for

children from low-income families? Finally, what are the special messages

that are necessary for children with spacial physical or social characteristics?

(2) Sluggish Federal Mechanisms for Achieving a Working Consensus

on Nutritional Guidelines for Children and Adolescents. The slow

prohyress in reaching consensus on appropriate nutrition messages reflects

lack of scientific consensus to some extent, but also the inability of

Federal agencies to deal in a timely manner with issues that zit across

professional disciplines and executive departments.

(3) Problems in Defining and Reaching Target Groups. The responsibility of the various departments, agencies, and programs is not clear cut

for nutrition services for children according to their demographic, social,

educational, and physical health characteristics. As a result, some groups

of children have suffered from nutrition education overkill and have had

the same messages repeated over and over again while other relevant

messages and larger groups of children are overlooked entirely.

(4) Program Patchwork. A patchwork of nutrition education programs

in three executive departments (Agriculture, Education, Health and

Human Services) exists with little common direction within either the

executive or the legislative branch of Government Definitions of what

constitutes a program vary. Depending upon the definition chosen, 19, 25,

26. or 27 programs with a nutrition education component were discovered

out of the 37 more g=neral nutrition programs serving children. The

majority of these are multiservice programs in which nutrition education

or information is an unplanned, unprogramed and often an unbudgeted

service. The effectiveness and efficiency of the nutrition education in most

of these programs have not been studied.

(5) Inadequate Outreach. Only a small proportion of children are

reached by any of the nutrition education programs. Two of the meal

programs, tine School Lunch Program and the Special Supplemental Food

Program for Women, Infants, and Children (WIC), appear to reach a

somewhat higher proportion of the eligible population.

80
(6) Ineffective Modes of Delivery. Government nutrition education materials are difficult to obtain, and educational methods and strategies employed are often untested and unevaluated. (7) Organization of Government Contributes to Rather Than Alleviates

These Problems. Federal, State, and local Government structures and regulations are often at cross purposes. (8) Inadequate Professional Preparation. Many of the professionals charged with providing nutrition-related health, education, or food services are inadequately !rained.

RECOMMENDATIONS

(1) More Highly Integrated and Better Inventories ofPresent Program

Efforts. The two major agencies continue to use different definitions and

schemes for classifying nutrition education and related programs and materials. A single set of definitions and a matrix for classifying programs and materials should be agreed upon and adopted by both agencies to

achieve an overall picture of nutrition education activities in the United States. This will result in a clearer assignment of responsibilities among and within Federal departments, agencies, and programs. Similar data gathering and consolidation ities have been suggested for other Government programs (M. (2) More Coordination and Integration or Congressional Oversight Activities. Coordination ar the ccngressional level can do much to

eliminate excessive duplication and to stimulate cooperation among the executive departments and programs. f3) Cost Accounting Systems With Budgetary Breakouts for Nutrition

Ethication and Related Nutrition Services. Budgets for nutrition-related

activities are extremely difficult to discern for many programs. Better data on actual expenditures and more explicit rationales for estimates are urgently needed, especially in DHHS and Department of Education

programs.

(4) Greater Simplification and Specification of Eligibility. The General

Accounting Office recently has recommended standardizing eligibility and

improving referral systems among programs (45). (5) Extension of Services to Eligibles Who Are Most in Need and Not Yet Being Reached Such a measure also requires more sophisticated

reporting systems than are currently available for most programs. (6) Better Coordination Among Federal Health, Education, and Nutrition Programs That Reach Children at Singlc Locations. aoser linkages between food, health, and education programs in day care centers, schools, and other settings are needed. (7) More Emphasis on Efforts That Reach the Childin the Home. Mass

media or other nutrition education efforts that reach the child in the home

can enlist parent support. Because only a few programs currently reach

the child at home, more emphasis in this direction should be seriously considered.

81
(8) Better Referrals Betweer. Programs. With the exception of the food

programs, few of the general nutrition education programs for all children

provide for those with special needs and at greatest risk. The categorical

programs that do cover these special groups often do not include the

services included in the more general programs. Better referral systems

could lead to children in special groups being given special status in the

more general nutrition education programs, which maintain a broad

progrim base. (9) Reviews of the Effectiveness of Various Nutrition Education

Progrims and Appropriate Reformulation If Necessary. New strategies

-nay be better suited than existing efforts for achieving program

tiveness.

(10) Elimination of Unnecessary Red Tape and Regulations. Many

DHHS and Department of Education programs lack documentation of

costs and delivery of nutrition services; however, USDA programs require

tedious paperwork and cost-reporting procedures. The USDA should

streamline its reporting systems while preserving the essentials necessary

for program evaluation. The other agencies need to put theirs in place.

(11) More Emphasis on Nutrition Education That Is Linked Closely

With Health Promotion and Disease Prevention Programs for Children.

Dental caries. obesity, iron deficiency anemia, and diet-related risk factors

for a number of chronic degenerative diseases occur relatively frequently

to children during the first and particularly the second decades of life. The

results of several demonstration projects indicate that nutrition education

programs that incorporate these elements are well accepted by primary

and secondary school students. Yet no major State Government program

has incorporated all of these elements into its nutrition education

curriculum. Federal assistance may be needed to foster such efforts.

(12) Implementation of the Specific Recommendations ofthe National

Nutrition Education Conference's Task Force on Children. These recommendations include specific measures for addressing the above issues

within the existing bureaucratic structures. (13) Delineation of the Department of Education's Role in Nutrition

Education. Nearly all of the nutrition-education-related programs in the

former HEW Office of Education are now transferred to the new

Department of Education. Delineation of projected nutrition education

activities, consolidation of existing programs, and the forging of links with

other relevant Federal departments are necessary to avoid problems of

coordination and excessive duplication.

(14) Conclusion. As the national dialogue on the unmet needs of

America's children continues (70, 72-76), attention needs to be paid to

nutrition and nutrition education ( 77).

A growing consensus is emerging to promote health and prevent disease

in children by taking these steps to improve their nutrition:

Ensure that all American children achieve sufficient intakes of

nutrients.

Provide appropriate nutrition information and education so that

children are fed and will choose to eat diets that promote health

by avoiding insufficiencies, imbalances, and excesses of nutrients

82

f r%
or energy and minimize dietary and other related risk E.ctors for disease.

Meet the special nutritional needs of certain groups of children by providing appropriate diet counseling and food and health

assistance.

Apply what is already known and continue progress in research

and training in human nutrition to improve the health of children.

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Nutririo Education 9: 150. 1977.

86 1 0
NUTRITIONAL PROGRAM

OPTIONS FOR

MATERNAL AND CHILD HEALTH:

A SUMMARY

by BARRY M. POPKIN, Ph.D., JOHN AKIN, Ph.D.,

MILDRED KAUFMAN. MS., MAURICE MACDONALD, Ph.D.'

1N'TRODUCTION

Nutrition is one of the major influences on child health and develop- ment. Major nutritional inadequacies that affect maternal and child health

exist in the United States and particularly in certain populations of specific age, sex, and racial characteristics. Iron deficiencies, poor growth, underweight, obesity, and inadequate vitamin A and C intakes and serum

levels exist. Recent research suggests that diet in early life affects the

course and rate of development of chronic degenerative disease in later

life. Poor growth is more of a problem among preschoolers than obesity. Iron deficiencies exist especially among children 1-3 years of age. Below

standard dietary intakes of preschoolers are reported for vitamins A and C

and for calcium. Retarded growth, obesity (10-25 percent prevalence), excessive dental caries, iron deficiency, and a relatively high prevalence of children with excessive serum cholesterol are nutritional problems observed among the school-age population. A high proportion of the births of low-birth-weight infants as well as inadequate dietary intakes of calories, calcium, and iron are related to the nutritional problems of

pregnant women. The Federal Government sponsors several programs to address the nutritional needs of women and children. The Department of Agriculture

(USDA) has three major programs: the Special Supplemental Food Program for Women, Infants, and Children (WIC), the National School

}Carolina Population Center. University of North Carolina at Chapel Hill. January 1980. Dr. Popkin

and Ms. Kaufman are with the Department of Nutrition. School of Public Health, and Dr. Akin is with the

Department of Economics, University of North Carolina at Chapel Hail. Drs. Popkin and Akin arc

Fellows of the Carolina Population Center at UNC-Chapel Hin_ Dr. MacDonald as with the institute for

Research on Poverty. Univenrity of Wisconsin at Madison87
Lunch and School Breakfast programs, and the Food Stamp program. The

Department of Health and Human Services (DHHS) supports nutrition

programs for children and pregnant women through Title V of the Social

Security Act, through Title XIX Medicaid and through Head Start.

It is anticipated that health promotion and disease prevention will be emphasized in the 1980's (1, 2). The 1980's may also witness the

emergence of a national food and nutrition policy. The United States

Dietary Goals, as developed by the Select Committee on Nutrition and

Human Needs, and the Dietary Guidelines, as developed by USDA and

DHHS, reflect an increasing awareness of the role of nutrition in health

promotion and disease prevention and may represent an initial step

toward such a policy (3). In the 1960's and 1970's, awareness of the impact of undernutrition

increased greatly and was followed by the rapid growth of major USDA

food programs such as the Food Stamp program and the school feeding

programs. Additionally, USDA began to focus attention more on

nutritional needs rather than on issues of food surplus that underlay

earlier programs.

HEALTH AND NUTRITION

Understanding the effects of nutrition on health is important for

determining both the allocation of resources and the choice of programs

to meet the current nutritional needs of specific groups within the larger

society. The full range of nutritional problemsundernutrition, imbalances in diet, and overconsumptionmay occur in the same population

group. Because of the multiplicity of problems in a diverse society, it is

often difficult to make program decisions in response to emerging

problems (i.e.. obesity) without harming other participants. For example,

if the Food Stamp program or the school food programs were adjusted for

lower fat, sodium, and caloric intake, some undernourished persons might

be adversely affected. The methodologies available for measuring dietary requirements, food

intake, and malnutrition are problematic. Surveys of nutritional status and

dietary intake on a national basis are limited. National surveys such as the

Health and Nutrition Examination Survey (HANES) and the National

Food Consumption surveys report dietary intakes as related to Recommended Dietary Allowances (RDA). However, the Food and Nutrition

Board of the National Academy of Sciences, which publishes the

Recommended Dietary Allowances, has clearly stated that consumption

below the RDA does not necessarily mean that dietary inadequacy or

individual dietary deficiency exists. Additionally, these surveys identify

the number of "individual-days below standard" rather than the numbers

of individuals. Thus, even where national data are available, critical

questions exist regarding their interpretation. Substantial controversy also

exists among investigators over what constitutes nutritional risk, partially

because of the minimal research on the functional effects of malnutrition

(e.g., effects of low or deficient hemoglobin levels in child performance).

88
In spite of these limitations, however, available data give some indication of the nature and extent of malnutrition.

Nutritional Needs of Women of Childbearing Age

Rationale for Prenatal Intervention

The association between maternal nutrition and pregnancy outcome

(e.g., neonatal and postnatal infant mortality and birth weight) is documented in numerous studies (4-8). Increased fetal and neonatal mortality and reduced birth weights were observed during famines in World War II in Leningrad and Holland (9, 10). In more recent studies conducted among low-income Canadian (11) and rural Guatemalen mothers (12, 13), the role of nutritional supplements in improving birth weight is documented. Conflicting evidence of the relationship between

specific elements of maternal diet or nutritional status and pregnancy

outcome has been reported (12, 14). Baird (15) showed that maternal weight and height at conception may have more influence on infants' birth weights than increased calorie intakes during pregnancy. Naeye (16) showed that pregnancy outcome relates to maternal weight gain, which is conditional upon prepregnancy nutritional status. Methodological differences (17) including differences in the degree and duration of maternal malnutrition (12, 18) may explain these differences. Studies in Britain' have also suggested that the lifetime nutritional experience of the mother, other health factorr, the quality of obstetrical care, other aspects of medical care, sanitation, and a host of other variables contribute to outcomes of pregnancy (15, 19). Associations between low birth weight and low socioeconomic status have been well documented (19-22). In Britain, racial differences in birth weight persisted even after adjustments for socioeconomic status. A number of studies link the influence of dietary counseling for maternal diet to

improved outcomes of pregnancy (11, 23, 24). The consequences of undernutrition on the outcome of an adolescent pregnancy can be particularly severe, affecting not only fetal growth and development but the mother's growth as well. A majority of adolescent females do not achieve their ultimate height until the age of 17, although

the average age of menarche in the United States is 12.5-13 years. Among

teenagers in general, and especially teenage girls, a significant pi-oportion consume diets inadequate for their own growth (see table I). The

additional burdens of pregnancy further complicate this problem. Inade- quate dietary intake among pregnant adolescents, along with a host of other biological and socioeconomic factors, contributes to increased

incidences of low-birth-weight infants, infant mortality, and complications

of pregnancy (25). The edema, protein tuia, and hypertension syndrome, an additional dimension of pregnancy outcome, is also believed to be influenced by

nutrition, although the etiology and treatment for this condition remains

in dispute.

1 :_,13

89
TABLE le Modems intakes as a Percentage of Recommended Dietery

Alloweisoes (111,Ne), 10711 Revision+

Income Less Than Income Oreellar Than

Poverty Threeliold Poverty Threshold

Whits Bleck Valle Mock

Mile Female Stele Festude Paolo Female Maio Female

Percentage of RDA's among those 12-14 years of age

Calories 74 72 75 71 89 79 83 73

Calcium 100 78 62 64 108 84 74 59

Mon 61 49 63 52 69 54 62 55

Vitamin A 63 63 53 64 71 69 43 43

Vitamin C 92 69 - 75 128 102 148 95

Niacin 85 84 80 82 94 90 87 93

15-17 years of age

Calories 78 75 78 77 96 78 99 76

Calcium 100 49 69 46 109 63 68 51

Iron 60 40 66 43 89 48 73 60

Vitamin A 60 54 63 48 81 59 42 51

Vitamin C 77 82 67 83 105 84 65 84

Niacin 71 72 95 67 112 83 91 100

'Indicates that 50 percent of white males 12-14 years of age consumed less than 74 percent of the

RDA.

SOURCE: Values calculated from HANES Dietary Intake Findings (National Center for Health

Statistics: VHS Series II. No. 202).

Table 2 reviews many of the major studies linking nutrition, as well as

other factors, to improved pregnancy outcome.

Maternal Dietary and Nutritional Status

Although a number of studies have been conducted on the dietary

intakes of women, the results of these studies must be interpreted and

compared with caution. The HANES study is the only nutritional survey to date conducted on a

representative nationwide sample of the U.S. population. Although special

subgroups of the population have been sampled, including pregnant and

lactating women, data on these subgroups have not yet been published.

Major findings of HANES I with regard to adult women in general are

summarized in table 3.

Fifty percent of women ages 18-24 years had iron intakes below 50

percent of the 1974 RDA; approximately 93 pert ."-nt of all females had

iron intakes below 100 percent of the RDA. Over 50 percent of adult

women consumed below the RDA for calcium, and the proportion

decreased with increasing age. Approximately 50 percent of women 18-24

had vit:A7..in A intakes below two-thirds of the RDA. A smaller percent of

older women (25-34 years) were below two-thirds of the RDA for vitamin

A intake. Only vitamin C and protein intakes appeared to meet the

standard for a majority of the sample_

90
TAMS 2. fraolleie Al Omen' Want and Perenatial Mosta** and Milt Weight and del Oesumening fleiallaasktpa

Key Slugs, Ns sulfa

Prenatal and other

medical care

Food supplementation.

nutrition counseling.

prenatal diet

Socioeconomic factorsstatus

Income. education.

occupation. and race

Individual factors

Age and birth order

Ind~ *Sued factors

Smoking'. aicohok

and drug use

Maternal weight.

height and weight

gain during pregnancY

Shapiro. Schleonger, Nesbitt (6) Torts &

Gold (26) Kessler at

ad. (27)

Ebbs at al. (23) Burke

et al. (28) Cameron &

Graham (29) Tompkins et at (24) Bergner &

Summer (30) Habicht at

at. (12) Higgins (77) Lechtig et at (73)

Berry & Wight (31) Meson & Rivers (32) Hunt et al. (33) Kafatos & Zee (34) Karni- netzky at at (35)

Stockwell (21) Baird

(75) Butler & Elberman

(79) Weiner (22) Lewis

(20)

Baumgardner (36)

Baird (75) Needy &

Daly (37) Butler & El- berm= (19) Alberrnan

(38) ICaltreider & Johnson (39)

Terris & Gold (26) Davies at al. (40) Little

(47) Meyer at /a (42)

Whiting at at. (43) Fields g & Yankauer

(44)

Antonov (9) Surith (10) Habicht at al. (12)

Naeye et al. (5) Lechtig at al. (13)

Naeye (76)

Earlier prenatal =an, ammlociMed with more favorable outcomes of pregnancy

Food inspplementation, dietary

instruction. and improvements

in dietary habits associated with enprovernenta in birth

weight and lower perinatal infant mortality: although magnitude of Improvements varies considerably with individual studies

Maternal hemoglobin levels, other nutrition parameters Jr.- avows with Improved diet during pregnancy

Low birth weight and Want

mortality show hymens, reamtionship with inoorns and educational levels and occupier

tenni status; nonwhites have

higher Want mortality

Prinligrevidas and grand muiti- Peres have highest risks of

low birth weight and perinatal mortality; parities 2-3 have

lowest risks; teenagers and montane over age ?5 have greatest risks of unfavorable pregnancy outcomes

smoking and alcohol intake

during pregnancy have direct relationship with low birth

vmsight and prenadad smortallty:

even for moderate tobacco

use and alcohol intake, lower

birth weights reported

Maternal weight and height

and prenatal weight gain have

direct relation to infest birth

weight hhwye show, optional weight gain in pregnancy depends on maternal body build

91
TAMA 9. iladlan Parma law el 1974 Neaorranandad Dolly Allogranoe for

Salsaard PM, ludo Oar Ar Adt Warman by Aga

Ae Gimp glades Pvalaln CakAuss Iran VIONnIn A Vilarala C

Per centage

18-19 76 135 50 49 66 137

20-24 75 165 71 49 62 106

25-44 100 165 -85 66 75 124

SOURCE: National Canter for Health Statistics: Dietary Intake United Stator, 1971-1974.

Vitai arid Health Statistics. Sorts* 11, No. 202. [MEW Pub. No. 77-1647. Health Resources

Administration. Washington. U.S Government Printing Office, 1977.

The HANES I data also indicate the following:

( I ) Protein, calcium, vitamin A, and vitamin C intakes below the

standard were reported by a higher proportion of low-income

families than by upper income groups. (2) Caloric intakes of low-income white females were lower than

those of their upper income counterparts, but the reverse was

true for lower income black females.

(3) Al?-^ugh a high percentage of women were reported to have

below standard caloric intakes, the high prevalence of obesity

points to the need to consider energy expenditure in evaluating

caloric intakes.

Analyses of the HANES data for pregnant and lactating women are not

yet available. However, as information in table 4 suggests, studies on small

groups of pregnant women have identified nutritional deficiencies and

indicate that such deficiencies during pregnancy are not limited to women

of lower socioeconomic status. A significant proportion of pregnant

women appear to have caloric intakes below the recommended levels.

Although protein intakes appear to be adequate, caloric intakes may not

be sufficient to keep protein from being used as a source of energy.

Calcium and iron appear to be uniformly below standard in the diets of

pregnant women, and vitamin A intakes are marginal. Vitamin C intakes

are variable; more recent studies show intakes above the recommended

levels. This change may be due to improved diets or the lowering of the

recommended levels of vitamin C in 1974.

Pregnant adolescents are considered to be at special nutritional risk

because of the increased demands of both pregnancy and their own

growth. Studies on small groups of pregnant teenagers (table 4) have

revealed nutritional deficiencies similar to those of pregnant adult women.

Inadequacies seem to exist more frequently and more severely in calories,

calcium, iron, and vitamin A. Although the intakes of certain nutrients by

pregnant teenagers may equal or exceed the intakes of older pregnant

women, the greater nutritional requirements of teenagers often make them

more vulnerable to nutritional deficiencies, especially for calcium, iron,

and vitamin A.

With the exception of obesity, overt clinical signs of malnutrition are

rare for women of childbearing age in the United States. The extremely

low iron intakes of pregnant women seem to correspond to lower than

92
normal hemoglobin and hematocrit values. However, the extent to which depressed hemoglobin and hematocrit values are a normal physiological consequence of pregnancy is not clear. A review of a number of studies on

the iron status of pregnant women showed a significant proportion of women with anemia on the basis of blood hemoglobin or hematocrit

levels, which is a reflection of inadequate iron intakes in the past (54).

Nutritional Needs of Infants

Rationale for Infant Nutrition Intervention

Breast Feeding

Breast feeding has important effects on infant and fay .ily well-being, suggesting the need to promote this practice. Beneficial p .pects of breast feeding include immunological protection of the infant (55-57), the

stimulation of a desirable emotional bond between mother and child

(58-61), and Me supply of essential nutrients to the infant in an easily

digested and assimilated form. In addition, many investigators believe that bottle feed Lt, increases the probability that an infant will become an

obese child, an obese adult, or both (6Z 63). Formula-fed infants appear

to be more likely to become obese, but the reasons for this are unclear (63,

64).

Relationship of Infant Diet to Intellectual Development

The critical period of brain growth in humans is from conception to the

end of the second year (65). Although it is generally agreed that nutrition plays an important role in brain development (66-68), controversy

remains regarding the precise relationship of nutrition to intellectual development (69, 70). There is evidence that unless special efforts are made to provide intellectual as well as nutritional catchup for previously malnourished infants and children, they will lag behind their better nourished peers in some aspects of intellectual performance (71-73).

Infant Diet and Obesity

Obesity a major nutritional problem among Americans that occurs in

infancy and has been noted by various local and regional studies and the Ten State Nutrition Survey (TSNS). Infant obesity has been linked to an

increased risk of childhood obesity ( 74) and adult obesity (75). More

recent evidence, however, has obscured the link between infant obesity

and childhood obesity (76-78), and more research is needed to clarify this

issue.

:rifant Diet and Coronary Heart Disease

Lifelong eating habits have been implicated in the etiology of coronary heart disease. The ratio of high saturated fats to unsaturated fats in diets

rich in cholesterol has been linked to atherosclerotic lesions typical of

93
rams 4. loess ea Nrirlese latrine at Pregimat liVeassn

Weft Sara Age In Years Calories

Inowsnan (45)

Elleckburn (45)

Thompson (47)

Ilan* (48)

Slovens (49)

Singleton (50)

King (51)

Osolsky (52)

ticeenily (53)

&Mike and

Adabeaseata

N - a8

low-income

64% black

N 626

middle Income N-56

aN Inoomes

N 35

private patients N129

13-43

medkutily indigent primarily white

Adolescents Only N 51

low-Income

67% black

14.111

low-Income

67% nonwhite

N s 88

low-income

60% nonwhite

N :530

low-Income

71% black

13-28

21-33

15-17

18-24

25-32

19-35

> RDA

14-18

14-18

11-18

18% < 1/2

RDA

13-19 R.96%

RDA

57% < 75% RDA

< R D A

IIMM Rze80% RDA

5 > RDA

except 4 > yr)

59% < 2/3 RDA

81% < 80% RDA

7% < 1/2 RDA

.NE0 c 93% RDA

33% < 75% RDA

> RDA

ON= R=120% RDA

c < R D A

> 2/3 RDA

0% < 2/3 RDA

22% < 80% RDA

33% < 1 /2 RDA

> RDA

X 160% RDA

KEY: iitd x avenles-
VItemin A Vitamin C

67% < 75% RDA 90% < 75% RDA 43% < 75% RDA

36% < 2/3 RDA

4% < 2/3 RDA

2696 < 2/3 RDA

)7=80% RDA

x < RDA

< 2/3 RDA

88% < 2/3 RDA

76% < 80% RDA

56% < 1/2 RDA

< RDA

65% RDA

43% < 2/3 RDA

22% < 2/3 RDA

47% < 2/3 RDA

x=60% RDA

< 2/3 RDA

71% < 2/3 RDA

92% < 80% RDA

48% < 1/2, RDA

< RDA

x 85% RDA

14% < 2/3 RDA

4% < 2/3 RDA

5% < 2/3 RDA

56g1 0096 RDA

< R DA

< 2/3 RDA

65% < 2/3 RDA

81% < 80% RDA

20% < 1/2 RDA

< RDA

x > 90% RDA

28% < 75% RDA

0% < 2/3 RDA

0% < 2/3 RDA

0% < 2/3 RDA

x=150% RDA

< 2/3 RDA

18% < 2/3 RDA

38% < 80% RDA

> RDA

95
coronary heart disease. Some would argue that moderate infant cholesterol consumption is developmentally necessary because cholesterol metabolism may be stimulated to maturity through this mechanism (79--8I).

Breast milk provides a much greater proportion of cholesterol (20 mg/100

ml) than the three most widely used formulas (1.5 -2.2 mg/100 ml) (82).

The concern about the saturated fat intake level has led some physicians

to recommend low-fat milks for infants as a preventive measure. Fomon

(83) cautions that 2 percent fat milk only should be fed to children over

the age of 1 year. Studies of serum lipids and lipoproteins of breast-fed

and bottle-fed infants have reported no significant differences (84).

Health Consequences of Iron Deficiency

Iron deficiency not only affects the oxygen-carrying capacity of the

blood (anerzna), but non-anemia-related iron deficiency is associated with

problems related to growth, skin and mucous membranes, gastrointestinal

tract, muscle function, and behavior (85). Weight gains appear to be

particiLlaey adversely affected by iron deficiency.

The Nutritional Status of Infants

Despite the fact that infants (children through 11 months old) are

among the most nutritionally vulnerable of all age groups, only limited

work has been done to examine the nutritional status of American infants.

The first Health and Nutrition Examination Survey (HANES 1), the only

survey to date that collected nutritional status data on a representative

sample of Americans, did not include children under the age of 1 year.

HANES II will include children 6 months of age and older. Regional (the

north central States) (86) and local studies (e.g., New York City child

health stations) (87) have been representative of their study populations,

which have included large numbers of infants. The TSNS, which

examined 855 infants, did not survey infants within the entire United

States, nor did it survey a representative sample of low-income populations, which were consciously oversampled. However, the TSNS attempted to examine a. diversity of Americans and included various ethnic,

racial, regional, and income groups. The following information on infant

nutritional status is a report offindings from the TSNS.

Low-birth-weight infants continue to be found in high proportion

among some populations (low-income and black Americans). These

children have special nutritional needs and are highly susceptible to

infections and other health risks. Declines in breast-feeding practice and

duration among Americans have been reported (88, 89). Potential

nutritional and health-related problems resulting from this decline have

been studied extensively in recent years. Available preliminary data

suggest an upward trend both in breast-feeding practice and duration, at

least among middle-class women (90, 91). Information from the TSNS

indicates that infants were relatively well nourished in comparison to

96
other groups in the survey.2 The most striking nutritional problem

uncovered was the deficiency of iron intakes. Poor growth and underweight occurred more frequently than expected. Other problems identified in a smaller proportion of infants were obesity, low vitamin A and C

intakes and low serum vitamin A and C levels, and to a much smaller

extent, low dietary calcium and dietary riboflavin intakes (and low urinary

riboflavin levels). See table 5 for a summary of the TSNS findings.

Nutritional Needs of Preschoolers

Rationale

Preschoolers have been considered to be a nutritionally vulnerable group. P lthough prescloolers are growing at less rapid rates than infants and thus have a relatively smaller nutrient requirement, their growth rates and nutrient needs are relatively greater than those of older children.

Often, changes in preschoolers related to physiological and behavioral development can affect their nutritional status. They show decreased

-...rpetite and exhibit an increasing independence; they feed themselves, often refusing to eat anything other than a limited selection of foods (94), rird are unable to sit still long enough to eat a proper meal. Eppright et al. (86) reported that preschoolers who ate more frequently than their peers were more likely to have adequate nutrient intakes. "Nursing bottle syndrome" is most prevalent among preschoolers 3-4

years of age (95). Typically, these children are given a bottle during the day, at bedtime, or both, and they suckle the bottle for long periods of

time, leading to increased rates of dental caries. An estimated 25 percent of children 2 years old and 40-60 percent of those 3-4 years old have dental caries (83, 95).

The effect of nutritional status on intellectual development of preschool children is also a concern. The period of rapid brain growth in the human

extends through the 15th and perhaps as late as the 24th month of life (65, 66, 70). Malnutrition in the early preschool period may have an important effect on brain development Further, the preschool years are the period in which the child gains critical prelearning skills and knowledge leading to better performance in school. The apathetic, listless, irritable child suffering from anemia, undernutrition, or both is less able to take

advantage of this preschool learning period. Although the preschool child is less vulnerable than the infant to some

nutritional problems, the preschool child is particularly vulnerable to

others. Poor eating habits developed during the preschool years may have

long-term consequences such as obesity, dental caries, and some chronic diseases. Preschoolers are thus a prime target for nutritional care.

2Further information on the survey format and the findings is available in the four-volume series Ten

State Nutrition Survey. 1968-1970(92).

97
TABLE 5. Nutritional Problems of Infants In the UMW Shifts In the Ten Stele Nutrition Survey (TSNS)

Nutritional

Problem Magnitude of Problem

Identified HighRisk Population Comments

Underweight

Undersized

Obese

Inadequate dietary iron

intake

Deficient or low hemoglobin

values

Inadequate dietary

vitamin C

Deficient or low serum

vitamin C value'

30-50% of sample below 15th

percentile for weight

32-60% of sample below 15th

percentile for height

10% of infanta

Mean intakes below standard

with approximately 74% of

sample with below standard

intake

15% of white and SpanishAmerican children <2 yr of age

(and 30% of black children <2 yr

of age)

Infants from low-income ratio

States

Infants from low-income ratio

States

Appears to be somewhat equally

distributed between blacks and

whites; also no income

relationship apparent

Al infants but especially older

nonwhites from low-income ratio

States

Children from low-income ratio

States

Mean intake exceeded standard Infants from low-income ratio

but approximately 48% of sample States

with below standard intakes

13% of black children <2 yr of Black children from low-income

age from low-income ratio States ratio States

C 1t

Stuart-Meredith standards used

Stuart-Meredith standards used

Based on percentage of TSNS

infants exceeding 95th percentile of

triceps skinfold for the group

Current evidence (93) supports

lower normal hemoglobin values for

blacks; new standards needed for

reevaluation of these data; available

breakdowns include children 12-24

months of age

TSNS used a standard of 30

mg/day; 1974 RDA standard is 35

mg/day; using 1974 standards

these findings underestimate

deficient and low vitamin C intakes

Four Spanish-Americans 2 yr of age

were examined for serum C
Inadequate dietary vitamin A Mean intakes exceeded standard Older infants from IcviLincome

intake but approximately 15% of ogle States

with below standard intake

Defeat or low plasma

vita* A value

Inadequate dietary calcium

incite

Inadequate dietary nhoilavin

intakes

Deficient or low urinary

riboflavin levels

22% of children <2 yr of age

from Imincome ratio States; 8%

of whites <2 Yr of age from

higNincome ratio States (low

values)

Mean intakes we Its twice

standard but apprcodmately 6% of

sample below 400 mg /day intake

Mean intakes exceeded standard

but 2.5-5% of older infants with

below standard intakes

Children from Ic*income ratio

States

Older infants from Icwincome

States

OW infants from loAncome

ratio States

25% of children <4 yr of age Black children from both 411-

W low-income ratio States and

children generally from Ice

income States

values--because of their small

number, these findings are not

reported here; available break

downs inlude children 12-24

months of age

Available breakdowns include

children 12-24 months of age

TSNS used a calcium (Ca) standard

of 550 nigiday; 1974 RDA intakes

360 mg Ca for infants 0-5 months

and 540 mg Ca for infants 6-11

months. Using 1974 RDA's, younger

infants with intakes below 400

mg/day but above 360 mg would

be consuming adequate dietary Ca

TSNS used a riboflavin standard of

0.55 mg/1p00 calories; 1974 RDA's

for riboflavin intakes are 0.6

mg/1,000 calories. By 1974

standards the findings here slightly

underestimate the proportion of

infants with below standard

riboflavin intakes

Available breakdowns Include

,children 12-48 months of age
Nutritional Status of U.S_ Preschoolers

In the mid-1960's, evidence of the nutritional vulnerability of children

ages 1-5 years was accumulated from data in developing countries. As a partial response to the need for more information on potentially at-risk preschoolers in the United States, Owen's Preschool Nutrition Survey3

examined 3,400 children between the ages of 1 and 6 years and the TSNS

examined 3,700 children from 1968 to 1970. The HANES I survey, which

included 1,500 children, was the only survey to date that had a sample

representative of US. preschoolers. Available information indicates that U.S. preschoolers are in relatively

good nutritional health except for a small subgroup. Poorer growth and

nutrient intakes are associated with lower socioeconomic status. Clinical

signs of malnutrition are found in a very small proportion of the

population (ranging from 0.0 to 2.0 percent for most nutritional deficiency

signs). Poor growth by height measurements is much more common than

obesity in this group. Iron deficiency is strik4r.v, among U.S. preschoolers; the deficiency is indicated by dietary intake information and by

biochemical tests. Children 1-3 years of age were the most iron deficient

Below standard dietary intakes of vitamirs A and C, as well as low serum

vitamin A levels, are found for a sizable proportion ofpreschoolers. Black

preschoolers have the highest prevalence of low serum vitamin A of all

groups in HANES I. Calcium intakes are lower for black children than for

white children, although below standard intakes are found in both groups. Poorest calcium intakes are noted in the 2-3 years age group. A small

proportion of preschoolers (less than 3 percent) have below standard

dietary intakes of thiamine and riboflavin. Dental caries incidence is

higher among preschoolers than among infants but lower than that among

older children. HANES I data have not been examined for trace mineral

intakes. However, studies from Denver (9Z 98) indicaie that zinc

deficiency may be a problem among preschoolers, especially low-income

preschoolers. Table 6 summarizes the nutrition findings for preschoolers from

available HANES I data along with supplemental information from the

TSNS.4

Nutritional Needs of School-Age Children

in the United States

Rationale for Intervention

The relationship between dietary practices of children ages 6-17 years and suboptimal nutritional and health status has received considerable

attention. Food consumption patterns developed during the school-age

3Although the Preschool Nutrition Survey sample was drawn to be representative of the U.S. preschool

population. problems in participation resulted in a less than fully representative study group (96).

4About 40 percent of children ages 1-5 years in the Preschool Nutrition Survey took vitamin and

mineral supplements. which were considered in dietary intake calculations. About 25 percent of the TSNS

children under age 6 years took supplements. but these were not considered in dietary intakes.

100
years have been related to adult obesity and accelerated development of atherosclerosis and hypertension_ Short-term behavioral aberrations have been linked to hunger (99) and inadequate intake of iron (85, 100-102). Iron deficiency anemia limits oxygen transport and energy metabolism

and thus limits the ability to perform physical work and to recover from

fatigue (103). Iron deficiency without anemia may result in reduced

activity of nonheme iron-containing enzymes and thus limit muscular performance (104). A double-blind, before and after treatment, study in preschoolers showed that iron deficiency in the absence of anemia had

adverse effects on attention span and memory, but the deficits were

eliminated once iron status was returned to normal levels (105). An association has been found between iron nutrition and infection

(106). Prolonged recovery from infection may be a more accurate measure of the impact of iron deficiency than susceptibility to infection.

Hyperkinesis

The prevalence of hyperactivity among school-age children varies depending on diagnostic criteria and is reported to range between 5 and

20 percent (107). Contributing factors have included neurologic complications following prenatal or perinatal trauma, smoking during pregnancy, hereditary and congelii col factors, environmental pollutantsparticularly

lead, artificial additives in foods, and exposure to fluorescent lights (108). The elimination of synthetic food colors and salicylates from diets has

received much attention as a treatment to modify hyperactive behavior

(109, 110). Although some evidence indicates that a relationship exists between behavior change and the ingestion of synthetic food colorings, this relationship has been found in only a small proportion of the children

identified as hyperactive (109-111).

Long-Term Effects

Long-term effects of suboptimal nutrition during childhood are difficult

to identify because few studies have followed populations from childhood

into adulthood_ During early childhood, the differences in health that exist between races and sexes do not provide much information with which to

predict adult health outcomes_ However, by adolescence, differences in

body composition., serum lipid values, and blood pressure values begin to

assume more predictive value both in correlations between adolescent

health status and adult health status and in the propensity to develop

particular chronic diseases according to race and sex (112, 113).

Obesity

Childhood obesity has been associated with adult obesity (114). The

range of estimates of the probability of an obese child becoming an obese adult is wide (115, 116). In one 20-year study, it was reported that in a

sample of 50 boys and 50 girls who were obese, 86 percent of the boys and

80 percent of the girls remained obese into adulthood (117).

1

10I
TABLE S. Nutritional Problems of U.S. Preschoolers

Nutritional

Problem

Magnitude of

Problem

identified HighRisk Population

Data

Source Comments

Short stature

Underweight

Obesity

Low caloric intakes

Below standard dietary

iron intakes

Low hemoglobin levels

40% of sample below 15th

percentile for height

32% of sample below 15th

percentile for weight

7% of children ages 2-5 yr

Poverty-level preschoolers'

Poverty-level preschoolers'

Slightly more common among

whites than blacks and

females

14% of white children; 23% of Poverty-level preschoolers'

black children

86.7% of preschoolers Preschoolers' ages 1-3 yr

Below poverty: 4.9% whites,

8.3% blacks; above poverty:

1.2% whites, 7.7% blacks

Low transferrin saturation Below poverty.' 8.3% whites,

levels 22.1% blacks; above poverty:

13% whites. 15.6% blacks

G . 1 1 1 tu

TSNS Stuart-Meredith standards

used; only representative of

sample population

TSNS Stuart-Meredith standards

used; only representative of

sample population

TSNS Obesity defined by triceps

skinfold thickness exceeding

95th percentile; available

breakdown excluded 1-yearolds; only representative of

sample may not be significant

problem since 5% of

population is expected to be

greater than 95%

HANES I Low intake defined as less

than 1,000 kcals daily

HANES I Mean intakes were 31-40%

below standard

HANES I

HANES I

Biochemical iron deficiency

more prevalent in preschoolers than in older age

groups

Black, poverty-level

preschoolers had highest

prevalence of low transferrin
Bel* stolid dietary 323% of preschoolers

Agin A intakes

lc* No tar* A

Ms

Now poverty, 1,6% whites,

9,1% blacks; above poverty

24% *M000.3% blacks

Below standard dietary 44,2% ci preschoders

*sin C intakes

Below etandard dietary

glum Wakes

Mx standard Seery

Mk** intake

Below standard dietary

*la* intake

Dental cries

33,3% c4 black children; 13%

of white children

2796 of preschoolers

2,4% of preschoolers

Average nude( of decayed,

ranfunctionalioua and filled

teeth 1.0±0.6

18,696 01,05) with specific

dental Mud needs

Back, tmellYalevel

veschoclers

Black preechoders'

Mite, povattlevel

pftich0olers; bitc, Po*

level preschoolers

Dad( preeclvolers

Slightt/ more prevalent amcog

whites

SOO more prevalent among

blacks

Slightly higher for blacks

saturation of all HANES I

groups; preschoolers as a

group were higher than all

greuP excePt fer age group

6-17 years

HANES I Mean intakes for both income

levels were about 1,5 times

the standard

HANES I Black preschoolers had highest

prevalence of lowerum

vitamin A values of all groups

in HANES I

HANES I Mean intakes for both income

levels exceeded standard

(Ram Wtarnin C yokes have

not been published to date)

HANES I Mean Intakes for both income

levels natty twice the

standard

HANES I

HANES I

HANES I TSNS found average number

of decayed and filed primary

teeth was 1.8

HANES I Includes teeth waling, gum

treatment, decay treatment

(16.1%); data only broken

down by sex; males

idigeltenth higher

Ottoteerderestopolyweteedintehdtheesumys.
The predominant long-term risks of adult obesity are the increased

incidence of hypertension, stroke, and diabetes. Obesity is apparently

related to depressed levels of high-density lipoprotein cholesterol, a

variable that has significant negative correlation to the probability of

coronary heart disease.

Hypertension

Although the etiology of childhood hypertension may not be clearly

understood, it important to detect the condition, provide followup, and

intervene if it continues. Several studies have attempted to identify

children at high risk for hypertension as adults (118-120). Although

hypertensive levels in a small proportion of children may be predictive of

adult hypertension, levels of correlation between childhood hypertension

and adult hypertension are lower than blood pressure correlations found

for adults at two points in time. However, if irreversible modifications

occur in arterial walls after relatively short periods of hypertension (121),

it is important to identify not only children with persistent elevations but

also those prone to severe or frequent fluctuations.

The prevalence of hypertension in children varies with the definition of

elevated levels. Age-related blood pressure distribution curves have been

developed by the National Heart, Lung, and Blood Institute Task Force

on Blood Pressure Control in Children (122). Children with hypertensive

parents, black adolescents, and obese adolescents are more likely than

other children to have persistent blood pressure elevations (113, 123).

Reported prevalence of persistent hypertension in children ranges from

0.6 to 2.5 percent, but one-time measurements have identified prevalence

rates as high as 13.4 percent (120). Obesity and sodium intake affect high

blood pressure prevalence and severity (124).

Atherosclerosis

Several prospective studies have shown a relationship between elevated

serum cholesterol (over 200 mg/dl) and increased risk of coronary artery

disease (125). Results of autopsy studies indicate that patients of all ages

had intimal deposits and histologic alterations consisting of intracellular

and extracellular lipid deposits. The amount of surface area affected

increased slowly from ages 6 to 10 years (113). After age 10, fatty streaks

increased markedly in black teenagers followed by increases in white

teenagers after approximately a 5-year lag. Fibrous plaques began to

appear in the second decade of life. More plaque was foundin whites than

in blacks. Strong concluded that 15 years is required for the conversion of

all fatty streaks to fibrous plaques. However, since the rate of conversion differed between blacks and whites, the initiation of the fatty streak

process must differ from the process that produces clinical manifestations.

Basic morphological features of the coronary arteries influence subsequent

development of atherosclerosis. Risk factors influence the severity of the

disease and the pattern and onset of clinical features.

Several epidemiologic studies have suggested that the relative amounts

of low-density lipoproteins (LDL) cholesterol and hth-density lipopro104

118
teins (HDL) cholesterol are better predictors of the incidence of coronary heart disease than total cholesterol, elevated levels of HDL being

associated with lower disease incidence (126, 127). The HDL cholesterol has been shown to vary with body weight, weight change, smoking, and exercise_ Child HDL levels have been measured in the Bogalusa heart study population (84), the Princeton rarLily lipid program (128), and the Lipid Research Clinics prevalence study (129). Little variation in the risk parameters has been observed among preschool-age children_ By adoles- cence, ethnic and sex differences become apparent. In the Princeton

study, hypercholesterolemic (greater than 205 mg/dl) white children were much more likely to have elevations of LDL cholesterol in contrast to hypercholesterolemic black children, who were more apt to have elevated HDL levels_ In this population, approximately 29 percent of the hypercholesterolemic children did not have elevated LDL cholesterol values.

Nutritional Status of U.S. School-Age Children

Nutritional needs of school-age children (6-17 years of age) have been

of special concern not only because of the influence of nutrition on growth

and development but also because of its influence on school performance. For these age groups, suboptimal nutritional status may result in

decreased attention span, irritability, inability to sustain physical activity, and inadequate growth rates. Relatively long-range outcomes such as adult obesity, the acceleration of the development of chronic disease states, or both may also occur. Unless otherwise indicated, the following syymmary of nutritional and dietary status has been prepared from HANES I data. Clinical signs of deficiencies of niacin, vitamin A, vitamin C, iodine, and calcium were

found; adolescents were more likely to be affected than younger children. Some evidence of past rickets was found (see table 7). Dietary intake data

show that calories are likely to be below standard for those 6-11 years old_ (Table 1 summarizes median nutrient intakes as a percentage of RDA.) Height retardation was found in 20-30 percent of all children ages 6-10 years. This occurrence is indicative of longstanding undernutrition. The highest prevalence of obesity was found among white adolescent males. (Table 8 presents percentages of obese individuals in this age group from

the Ten State Nutrition Survey.) It is of interest in the TSNS that with

increasing income both black and white children were taller and heavier and more advanced in skeletal maturity and dental development (130). The problem of undernutrition and overnutrition existed, however, in all income strata_ Iron deficiency was noted in 5-25 percent of this population_ (Table 1 summarizes iron status information.) Dental prob- lems (dental caries and gingivitis) were found to increase with increasing

age. At least two-thirds of the HANES population who were 6-17 years of age required some type of dental treatment (131)_ The average number of decayed, missing, filled teeth increased from 1.7 for ages 6-11 years to 6.2 for ages 12-17 years (131). Relatively few children 6-11 years old had

gingivitis severe enough to require treatment (1.9 percent), but this figure

105
TM 7. Psalm d Ord Igne Mak ol NAM Odd

*kW and

8-11 Yen

Teti

12-17 Yore

TM

ClInkil ilis Inc> peel

IMIPIII

Inc < Pee

Indicata 1-11 12-17

of Wont Odd W Q W N Yon W B W 8 Yon

Nick)

Funibm PONY

triVrtfloPhY

of WO* 3.9 11.0 4,2 2.8 4.2 7,2 10.4 6.1 18.6 8.3

Percent

Walk! A

Maier

amts

!perks**,

5.9 2.6 7.9 14,7 6.7 7.6 5.1 10.6 6.5 7,9

Vitamin C

DIM* marginal

inforinetico 4,5 1.0 3,6 7,8 4.3 9.0 19.2 29.1 27.8 12.3

loeine

Thyroid enlargement

Suit Groups I and II 6.1 5.4 1.0 6.3 4.4 6,3 12.0 3.0 6.7 6.0

Caldum

ROM Chrostela

sign 4.5 6.4 5.6 7.6 4.8 12.5 12.4 14.8 18.9 12.7

ltrame(inc)above 100 pant d poverty (PoPral fon** OS) anl forblacks (8).

6.
Iroora of

Age While Mock White Wisck

12 18.3 9.8 10.0 9.0 13 18.8 12.5 15.3 18_6 14 29.0 13.0 11.7 11.1

SOURCE: U.S. Department of Health. Education. and Welfare: Tin State Nutrition Survey 19613-7a VaL 1-4. CHEW Pub. No. (HSM) 7'2-9133. Haman Services and Mental Health Admilniseetian. Canter for Disease Control. Atlanta. Gs, 1972

increased to 17.1 percent for males 12-17 years of age and 9.6 percent for females 12-17 years of age. Table 9 shows the proportion of children in the 6-17 years age group with elevated total cholesterol levels (above 200 mg/d1). The breakdowns of cholesterol values into fractions of high-density lipoproteins and low-

- density lipoproteins, which some believe to be better predictors of the

incidence of coronary heart disease than total cholesterol levels, were not available.

Summary of Maternal and Child Health Status

It is difficult to make definitive statements about the nutritional status of infants, preschoolers, school-age children, and women of childbearing

age because of problems in data availability, measurement techniques, and data analysis- Nevertheless, available data allow the identification of potential problem areas. Women of childbearing age have deficiencies of iron, calcium, and vitamin A Pregnant women in all income strata appear to have deficient

TABLE Propoilion of Childuen Ages 0-17 YIN1111 With To Chorbasissol Levels Above 200 negidl

Years of

Age

Miss r-seessies

MAW Mack Wh Black

Percent

6 9.0 30.3 182 33.2 7 3.6 24.8 26_9 28.3 8 11.4 42.2 27.3 46.7 9 25.0 26.7 292 45.0

10 22.5 18.9 23.6 32.3

11 30.0 30.0 24.6 16.1 12 19.2 34.9 229 19.4 13 23.6 15.3 13.4 18.7

14 17.6 11.8 16.1 24.6

15 9.9 10.4 18.3 40.3 16 10.1 26.0 19.0 31.8

17 17.9 26.4 24.3 24.3

107
nutrient intakes of calories, calcium, iron, and, to some extent, vitamin A.

Although protein intakes are generally adequate, insufficient calonc

intakes are known to compromise protein intakes by allowing protein to

be used for energy. Infants in the United States are generally well-nourished with the

exception of iron intake. Poor growth and underweight, obesity, and

problems in vitamin A and C intakes and serum levels exist among a small

subgroup of infants. Preschoolers are also in relatively good nutritional health except for a

small subgroup. Poor growth as indicated by height and weight measurements is more of a problem than obesity. Iron intake is a problem also for

preschoolers and especially for those in the 1-3 years age group. Black

children were noted to have greater vitamin A and calcium problems than

whites, although low dietary intakes and serum levels (vitamin A) were

also found in whites. Below standard vitamin C intakes were found for a

sizable proportion of preschoolers. School-age children 12-17 years of age are more likely than children

6-11 years of age to have substandard nutrient intakes and clinical signs

of deficiencies. Clinical signs of nutrient deficiencies were found for

niacin, vitamin A, vitamin C, iodine, and calcium. Children ages 6-11

years were more likely than older school-age children to have below

standard caloric intakes. Height retardation, indicative of longstanding

undernutrition, was found in 20-39 percent of children ages 6-10 years.

Obesity was most common among white adolescent males but was found

in other school-age children as well. Iron deficiency ranged from 5 to 25

percent in this group. Dental caries increased with age.

The rationale for nutrition intervention for these groups is based on the

following premises: (1) Nutrition is one of the major environmental influences in the

establishment and achievement of child health potential

(2) Nutrition can affect the course and rate of development of

chronic degenerative disease. The impact of adequate nutrition on postdelivery child growth and

development is well known. Newer research indicates that intrauterine

growth and development is linked significantly to nutrition. There are

indications that nutrition can have profound influence on brain development, intellectual performance, and behavior.

A clear relationship exists between nutrition and dental disease, the

most prevalent child health problem. Many adult diseases may have had

ther basis in inadequate childhood dietary practices, poor nutritional

status, or both. Although the relationship of long-term dietary practices to

the development of such killer diseases as hypertension and atherosclerosis needs further investigation, sufficient evidence is believed to exist to

warrant the inclusion of dietary modifications felt to reduce the risks of

these diseases in the Dietary Goals for the United States.5

5Several significant socioeconomic factors ...ere UM mentioned in this brief overview. This reflects the

fact that analysis of socioeconomic determinants of nutritional status for the U.S. population has been

limited to income (variably defined) and race- Newer analyses should provide information on the impact

of such social phenomena as working mothers and single-parent families. as well asother economic and

environmental factors on nutritional status..

108
U.S. GOVERNMENT NUTRITION PROGRAMS

FOR MOTHERS AND CHILDREN

Issues relating to the development and implementation of the wide variety of Federal food and nutrik;on programs are complex, as are

considerations of future policy options. The following discussion summa- rizes some of the more prominent issues. The full report of the Select Panel for the Promotion of Child Health (available from Nutrition Planning) (132) presents a much more complete analysis of each program.

U.S. Department of Agriculture Programs

The U.S. Department of Agriculture, particularly the Food and Nutrition Service, has three major programs that affect the nutritional status of mothers and children: the Special Supplemental Food Program for Women, Infants, and Children (WIC), the National School Lunch and

School Breakfast programs, and the Food Stamp program.

The Supplemental' Food Program for Women, Infants, and Children

The WIC program is a successor to smaller USDA programs that provided supplemental, nutritious food to low-income pregnant and lactating women, infants, and children who were at nutritional risk. (Earlier programs included the Commodity Supplemental Feeding pro- gram and the Pilot Food Certificate program.) The WIC was passed by Congress in September 1972 as a pilot program with an annual budget, of $20 million and has grown, despite administrative and political impedi- ments, to a $750 million per year program that reaches 13 million women, infants, and children. The WIC program is unique among Federal food programs in that, although it is administered at the Federal level by USDA, at the local level it has close ties to Federal, State, and local health programs administered by DHHS. Local agencies operating WIC programs must see that health services are available to WIC participants. This linkage of WIC to prenatal and child health care services is one of the more controversial

aspects of the program. In many areas where the required health sem:L:4s are not available, women, infants, and children may not be able to receive

supplemental foods through WIC. In idition, some local WIC programs have expanded in size and scope so rapidly that they have exceeded the capacity of existing public maternal and child health services. Conse- quently, one option for expanding WIC services is to make maternal and

child health services universally available. A second option is to permit WIC services to operate without the requirement for the availability of health care services. There is no clear research basis for making this decision.

The WIC program is also unique in having been more extensively evaluated than other food and nutrition programs. This is partly the result of the authorizing legislation that requires an evaluation of program

benefits. Although the evaluations performed to date cannot be consid1"3 109
ered conclusive, they suggest that the WIC program has had a positive

impact on the health status of its participants, including improvements in

birth weights, infant and preschool child growth, and iron status.

However, many aspects of WIC remain to be examined, such as whether

the benefits arc equitably distributed among those eligible to receive them,

whether they are reaching the most needy, how well the program is

administered in some States compared with others, what is the impact, if

any, of nutrition education, and which local, State, and Federal policies

enhance or hinder the operation of the program. There are also medical

questions such as which component of WIC (food supplementation, nutrition education, or the linkage with maternal and child health

services) has the most significant health impact or whether the components act synergistically. The ultimate goals of the program are also left

open, and the question remains whether health benefits are maintained

once individuals are no longer eligible for WIC.

The WIC participation has grown rapidly since its implementation in

1974 (the first year of operation) when 206,000 people participated. By the

end of 1978, there were 1,318,000 participants. However, this is a small

fraction of the 8.7 million women, infants, and children estimated to be

eligible to participate in WIC based on income criteria. Many of those

who arc nutritionally in need cannot participate because of inadequate

funding or because of Federal, State, or local policies that make it difficult

and costly for low-income people to participate.

School Food Programs

The National School Lunch program is currently available in 75 percent

of all schools throughout the United States and to approximately 90

percent of all school-age children. On any given day, approximately 50

percent of all eligible students participate. In general, participation rates

within elementary schools are greater than those within secondary schools.

Participation rates of children eligible for free or reduced price lunches

exceed those of students paying the full price (85 vs. 46 percent in 1975).

The School Breakfast program is currently available in approximately

25 percent of all schools to about 30 percent of all children. Average daily

participation of students in these schools is approximately 25 percent.

Although 85 percent of all breakfasts are served at free or reduced price,

little is known about how price and other factors affect participation in the

breakfast program. A number of Federal options are available to encourage more schools

to adopt lunch or breakfast programs. Aid for equipment would probably

have the most significant impact, and increasing the per meal reimbursement rate is another means of encouraging schools to participate.

Commodity food processing contracts that would simplify the use of such

foods is another means of making a meal program more feasible. Schools

that have not adopted a lunch program by now, however, may not want

such programs regardless of Federal reimbursements.

Many schools that provide a lunch program do not offer a breakfast

program; therefore, different incentives may be necessary to increase

breakfast programs. Several options are to require breakfast programs in

110 1 )^.... '1
schools of "severe need," schools that participate in the School Lunch program, or all schools. Financial incentives, possibly including reim- bursement for nonfood costs, could help schools pay labor and utility

expenses. Services could also be provided to help school systems modify busing schedules to fit breakfast program schedules. At the local level, information on the benefits of a breakfast program and the numbers of children who would benefit could be used to elicit community support. Because so few schools now participate, expansion of the School Breakfast program may be one of the most cost-effective means both to alleviate poverty and to increase the amount of nutritious food available to children. Although such programs still must be carefully evaluated, it is

likely that significant nutritional and learning benefits accrue to partici- pants. Another possible means of achieving added benefits from the school meal programs is to encourage higher participation rates within existing programs. A School Breakfast program price subsidy of 10 cents per breakfast would cost USDA about $54 million per year and probably add over 500,000 participants. Menu selection choice and food quality also affect participation rates. Nutrition and health education may affect the decision of a child to participate and also have an impact on food waste. Policies that regulate the availability of foods that compete with the standard school meal, such as a la carte foods or those in vending machines, may also influence participation rates. The relative cost and impact of each approach on participation rates remain to be determined. If child health is to be maintained or improved by the school meal programs, health objectives must be specified in a more comprehensive manner. For planning purposes, a nutrient meal standard and a

completive food classcation that specify desirable ranges of nutrients such as thiamine, iron, vitamin A, or zinc and acceptable levels of fat, cholesterol, fiber, or sodium might be preferred to the type A pattern.6 An important and overriding policy issue related to both the School Lunch and Breakfast programs is the extent to which they are to be

focused on poor or undernourished children rather than on all children.

Arguments can be made for either emphasis. The original legislation for school food programs applied to all school children and did not focus on

needy or poor children. While subsidizing only needy children appears to require fewer dollars, the benefits of a broader focus may be considerable. For those who need to participate, the stigma is almost certainly reduced in a more general program. Whether a change in emphasis would better serve the Nation depends on current national objectives and priorities.

The Food Stamp Program

The Food Stamp program, which benefits a large number of poor mothers and children, may be considered either a nutrition or an income

supplement program. Little is known about the nutrition impact of this program, which provides a significant contribution to household food

6The type A lunch provides a child with one-third to one-half oft days nutritive requirements following

guidelines for inclusions of specific foods.

Ill
purchasers and overall economic welfare. It has been postulated that

substituting cash for stamps would increase program participation but

would most likely reduce its nutritional benefits. Additional restrictions

on food purchases (e.g., through color coding for purchase of specified

food types) might restrict program participation. An alternative approach

would be to improve nutrition education for participants. However, much

research is necessary to determine whether the USD., Expanded Food

and Nutrition Education Program and other nutrition 'cation programs

would be cost beneficial.

U.S. Department of Health and Hannan Services Programs

In DHHS, nutrition services are included among the various services

that are considered health services. In 1935, the Social Security Act Title V

maternal and child health funds established the first ongoing nutrition

consultation services in many State health agencies. In the mid-1960's,

DHHS guidelines defined nutritional care for pregnant women and

children through the maternity and infant care project and the health

services for children and youth project. However, nutrition services and

other services arc not specified in DHHS legislation and must compete

with the array of other health services for increasingly tight dollars.

Comprehensive nutritional care includes assessment, counseling, and

education, referral to available food assistance programs in the community, and followup. Such care can be provided to childbearing women,

infants, and children as a preventive or primary health care service and

can be delivered through public health clinics, community health centers

in rural or urban areas, or through other health care providers.

Services are provided directly to native Americans through clinics

operated by Federal public health services or contract health care

providers. The DHHS funding for maternal and child health and nutrition

services is available through Title V Social Security Act formula grants-inaid to State health agencies, through Medicaid-EPSDT third-party

reimbursement, and directly from the Federal level to local grantees for

primary care and Head Start.

Available information indicates that some exemplary programs provide

quality nutritional care as a component of health care; however, funding

and other constraints limit the availability, accessibility, and quality of

maternal and child health services, and the availability and accessibility of

nutrition services vary among and within regions and States. In general,

nutrition services are underfunded and understaffed in relation to client

need.

Within recent years, DHHS has evidenced an enhanced interest in the

role of nutrition in outcome of pregnancy, child growth and development,

lifelong disease prevention, and health promotion. A basic issue for

DHHS is developing the capacity for ensuring high quality, effective

nutritional care as an element in the public health and primary health

services for mothers and children and attempting this service through

legislation, regulation, administrative guidelines, funding criteria, or the

setting of quality assurance standards for ambulatory nutritional care.

112
A second issue is who should provide nutritional care and whether

physicians, nurses, social workers, and multipurpose community health

workers can be adequately trained and motivated by nutrition profession- als to provide knowledgeable and appropriate nutritional care to clients.

Should the cadre of nutritional professionals and paraprofessionals be

enlarged to provide most of the nutritional care or is an appropriate mix

the most effective?

A third issue is the financing of nutritional care no matter who provides

it. Currently, no DHHS funds are specifically earmarked for nutrition

services, and competition is keen for health service dollars. Potential options include providing new appropriations earmarked for expanded

nutrition services, reallocating existing funds through funding criteria or through mandating nutrition services, or encouraging States to use Medicaid funds or other third-party payment sources for nutrition

services. Provision for nutrition services should be included in any national entitlement program enacted in the future. Many State and local public health agencies are currently experiencing

severe cutbacks in funds for nutrition staff. For example, the increased

availability of WIC funds for the services of nutritionists in some cases has

been caused by the reallocation of former Title V nutrition program funds

to other services. After Proposition 13 was passed in California, eight health departments lost funds for nutrition services (133). These losses

tOtaratISI34:419-11141 represented 6:6 percent of the total funding allocated

in California for nutrition staff in fiscal 1977-78. These losses were related

in part to a reduction in State grants for maternal and child health and were attributed to Proposition 13. Over $96,000 (12.3 percent of all locally

supplied revenues for nutrition) was from local revenues. Although these

losses appeared to be offset by WIC revenue increases, the WIC eligible population is much more narrowly defined, depriving many women and

children over age 5 from eligibility for nutrition services. The impact of Proposition 13 on California public health nutrition services has been

studied in detail in terms of changes in funding, staffing, and time

allocation.

A major issue is the various interrelationships and linkages between DHHS maternal and child health services and the USDA child food

assistance programs. Ideally, eligibility criteria should be consistent, service delivery systems should be integrated, and costs for maternal and

child health and nutrition services and WIC should be shared. School

health and school health education service potentially can tic in with School Breakfast and Lunch programs. Issues of coordination and

linkages between these programs depend largely on Federal, State, and

local administrative structures, regulations, and procedures for monitoring

and auditing.

PROGRAM AND POLICY OPTIONS

The policy decisions that influence food supply and demand originate

from widely divergent sources, ranging from agencies of the Federal Government with various mandates (e.g., incomes and price policies,

113
health protection and promotion, and avicultural and feed processingmarketing issues) to private-sector food manufacturing health insurance,

and health care providers. A large number of factors, including nutritional

care provided in maternal and child health programs, indirectly affect

nutrition by changing the level and nature of food demand. U.S.

Government policy options for improving nutrition and the diet include a

wide range of regulatory and program alternatives, many of which could

influence maternal and child nutrition?

Food Supply

The food supply determines which foods (in specified forms with

specified nutritional content) are available in each locale at different times

of the year. The U.S. Department of Agriculture and other Government

agencies may provide price supports or lower production costs through

other subsidies and in ether ways to affect the kinds and quantities of

available foods.

One of the major issues confronting nutrition policymakers is developing policies to deal with major shifts in food supply and distribution.

Government intervention in food production and distribution includes

research in animal and plant production and soil and water; price

controls, crop acquisition and storage; regulation of insecticides, fertilizers, and pest control; international trade; and regulation of food safety,

food fortification, processing, and vending and restaurant services (see

table 10). The nutritional benefits and costs of such multiple activities are

poorly understood. One food supply issue relevant to maternal and child health is the role

of the ubiquitous vending machine, which offers food relatively high in

sugar, salt, and calories but which accounts for about $10.5 billion per

annum in food expenditure (135, 136). A number of studies and efforts are

underway to determine ways in which the quality of the food in vending

machines can be improved. The proportion of meals and snacks eaten away from home has recently

increased in restaurants, fast food chains, and more traditional places such

as work-place cafeterias. Little is known about the resultant health and

nutrition impact. One of the important issues that must be faced in

considering the nutrition implications of food supply sources is the

contrast in nutritional content and resultant health significance ensuing

from increasing consumption of processed foods versus natural counterparts.

Food Demand

The demand for food is affected by the price of food products, the

available consumer resources for obtaining food, and access tc- is

7112c Comptroller General is completing an inventory of 359 Federal food. nutrition, and agriculture

programs in 28 U.S. Government agencies (134).

114

through various Federal rood programs. Table I I presents some of the

possible intervention points in the food demand chain. Food advertising,

food labeling and grading, child nutrition programs, and ambulatory

nutritional care are the relevant issues related to the demand for food and

are addressed here only briefly. Food advertising (e.g., brand identification) often delivered in creative

and subtle ways by the food industry to influence food choice represents a

significant proportion of the United States' food bill. Estimates of the

costs of food advertising range from $1 billion (137) to $6 billion a year

(or 3 percent of our food bill) (135). In addition, Brewster and Jacobson

estimate that the American people pay about $26 billion, or 3 percent, of

their food bill for packaging that is often another form of advertising

(135). In contrast, very little money is spent on nutrition education, which

may be necessary to counteract the influence of food advertising.

The Federal Trade Commission (FTC) and other Government regulatory commissions have considered a number of options for limiting the

impact of food advertising, particularly that aimed at children. Childoriented television advertising is mainly for food and is largely focused on

sugared foods (138). The average child between the ages of 2 and 11 years

will view 20,000 _television commercials. Child psychologists, dentists,

nutritionists. and child advocates believe that these advertisements have

had an adverse effect on child health (138). It is important to note that

while the FTC has been considering curbs in child-oriented advertising,

Congress has been considering limits on FTC's consumer protection

authority, particularly its power to restrict "unfair" advertising, which

forms the basis of the FTC children's advertising inquiry.

Food labeling and grading are other issues that are being hotly debated

by nutrition and consumer groups (139, 140). If the United States is to

promote the U.S. Dietary Goals, careful research and policy changes must

be implemented in this area. For example, the long-term increase in

consumption of fat-marbled beef provides more saturated fats and

cholesterol than the leaner forage-fed beef of 50 years ago (141). Food

grading could be changed to promote consumption of the leaner ber-xf

(140). The key USDA maternal and child nutrition programs noted previously

also affect food demand, as do other major USDA programs such as the

Child Care Feeding Program, the Expanded Food and Nutrition Education Program, and DHHS programs such as Head Start, social welfare

(e.g., Aid to Families with Dependent Children), maternal and child

health care, and school health programs. Nutrition services, whether perceived as health promotion or disease

prevention, can affect consumer food choice, and nutrition assessment of

individuals, food supplementation, and nutrition counseling and education can affect food demand. Ambulatory nutritional care is provided to

some mothers and children by public health agencies using funds from

Title V of the Social Security Act. Potential Government influences on the

use of ambulatory nutritional care in health care are presented in table 12.

116 3
TA MILK 11. Perim 00t/OVVW/MNItt WINGS 1101111 Ora Food Demand

Feed Dessendi

Dellseivissala

ITS

!CV .4 nr

Maier Function

Food Plow

Subaklized prices by school insole, and

other programs (also

pertly income

supplements)

Income-asests

Soder! Security and welfare system

Employment-work conditions

Veterans payment

Direct feeding

preschoolers

_ _School feeding

!Elderly feeding

Educadon--public sector School curricula

School health programs

Ambulatory nutrition

cares

Home economies

extension

Educationprivate sector Advertising (radio-TV- prkxr)

Labedng-grading

Religious and social

institutions

11110.,0A

DHHS

Department of Labor

VA

USDA-DHHS

USDA

DHHS-USDA

Department of Education

DHHS

DHHS

USDA

FCC-FTC-FDA

FTC-USDA-FDA

Privatevoluntary sector

Reduces price of althea iunches, provides commodities for child and

elderly feeding programs and

consequently reduces their costs

Provides Social Security, 551, AFDC, AID to handicapped, etc.

Maternity leave, child care, other practices

Child care feeding programs and

food commodities of USDA, and Head Start of DHHS

School lurxt and school breakfast

programs, milk program, AOA

feeding programs, also USDA

commodity foods program

State. load. Federal inputs into

hearth education programs in

schools

State-local public health nutrition

service

Extension Service work vs. home

economics and nutrition; also 4-H

Youth programs

FDA--ottadies consumer perceptions about food values, considers changes; FTC--prevents false and

deceptive advertising

FTCregulates packaging and

labeling of certain foods and drugs; USDAregulates others; FDA

regulates tobacco, alcohol, drugs

"This determinant is expanded in table 12.

117
TAME 11. Petals a1 Clovarament Influences on Peed Osmond (Cont.)

Mod Demand

Detenninenle

Key Oosenvonent

Deparament or Agency Major IFuncalost

Ambulatory nutrition Private sector

cars Public health

Others Privatevoluntary

sector

Household size- DHHS-privatecomposition voluntary

Family planning sectors

Finandng Nutrition Services

In a sense, the financing of nutrition programs cannot be considered

without considering the broader question of whether maternal and child

health care is a right or a business. A great deal of attention has been

focused on the issue of third-party reimbursement to the nutrition

provider through public and private financing mechanisms (142, 143). At

present, a few health insurance companies reimburse registered dietitians

as independent providers, usually when referred by physicians. However,

this procedure is not consistent across the country or even within a given

insurance company (143). When nutritional care is reimbursable, it is

usually for persons with chronic diseases. Nutritional care in health

promotion for mothers and children is the rationale behind selected

DHHS maternity and infant care and children and youth projects.

CONCLUSION

Major nutritional inadequacies exist in the United States that have an

impact on neonatal, infant, child, and adult mortality, morbidity, and

intellectual capacity. Children and pregnant women are particularly

vulnerable to nutritional deficiencies. Certain of these deficiencies arc

more pronounced in specific subgroups, and many of them are associated

with income levels, race, sex, and age. However, changing patterns of

nutrition related to prosperity and convenience are affecting the entire

population and are changing the prevalence of some nutrition-related

abnormalities.

Recently, a new awareness of the relationship between nutrition and

health has arisen, and research and programs to address nutrition

problems have expanded substantially. However, much is still not

understood, and many people remain nutritionally at risk.

Major Federal Government nutrition programs have been implemented

over the years to meet the nutritional needs of the American population,

and many are designed for low-income women and children. However,

118 132
TAMA 12. Pelee Sal Oevernment led bream on Wm Provision of Ambulatory

tairettlien Care Serviesa OD Component of Health Care

AllibiliMarf Nub, Non COM 010111018

Soma Key Goverasaser

Deperbseenis and Agencies Major Function

Tnliwolcie---nutribori and heelth personnel

OHMS

Resserch--needs. NIH-F4SRCoptions. programs impact. COC-HRA of

and effectiveness OHS

Funding of services

(demand for services) Pub lic--MedicareMedicaid

Private--insniranCe

sector

SEA-FNS of

USDA

BCCHS-OHHS

DOD-VA

NSF

DHHS

OCHS. Nitl, elsewhere fund

nutrition training for nutritionists, other health professionals (nurses. M.D.'s, dentists) and social scientists; devekornent of training materials

Basic physiological needs; metabolic studies; consequences of nutritional status on disease;

envirorwnental. other food

constraints: 1101110; nutrition assessment (e.g., HANES and CDC

surveillance; health care use.

expenditures)

Human requirements for nutrients, food composition and improvement food consumption (e.g.. NFCS), and

food policy. food usage

Nutrition tor maternal and child

health

Nutrition standards for Armed

Forces, evaluation of diet and needs; VA research on diet and

assess and nutrient requirements

Research in education. behavioral and social science. on foods and

nutrition

Direct funding of private and

nonprofit services through

insurance

FTC-insurance DeterminatiOA a reimbursement

industry rates and types of nutrition

services included in policies; regulations of insurance sector practices

because of inconsistencies in objectives among the various programs and because of unevenness of administration at the Federal, State, and local levels, the programs have had different rates of outreach and success within different areas, and their effectiveness for meeting the needs of eligible populations is unknown.

119
In addition, Government interventions in food supply and food demand

are many and varied and also have an impact on nutrition and costs of

food, which affect the wider population. Government policy and programs now face the contemporary challenge of responding to emerging nutrition problems (for instance, the role of diets in health promotion and

prevention of chronic degenerative disease), while continuing to address existing problems of hunger and undernutrition for which many Govern- ment programs were initially designed. This challenge will require great efforts at cooperation and coordination among Federal, State, and local government agencies.

ACKNOWLEDGMENTS

We wish to thank all those individuals who provided information and

assistance in the preparation of the original background paper. They are

too numerous to be listed here. Th. graduate students in the Depart- ment of Nutrition, Pamela Haines, Deborah Spicer. and Monica E. Yamamoto, played major roles in the preparation of this document. The others are thanked in the original 352-page document, which can be obtained from Nutrition Planning, P.O. Box 8080, Ann Arbor, Mich. 48107.

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I aJ 9 125
BEHAVIORAL ASPECTS OF

MATERNAL

AND CHILD HEALTH:

NATURAL INFLUENCES AND

EDUCATIONAL INTERVENTION

by PATRICIA DOLAN Muu.EN. D.P.H.I

PREFACE

Growing emphasis on the layperson's role in protecting and improving his or her own health is slowly reshaping the health sciences and Government priorities and programs directed at health. The formation of a President's Committee on Health Education, establishment of the Bureau of Health Education within the Center for Disease Control of the

Department of Health and Human Services (DHHS) (formerly the Department of Health, Education, and Welfare), congressional hearings, passage of legislation to form an Office of Health Information and Health Promot;on, and the commissioning of policy papers on adult health

behavior2 and specifically troubling aspects of adolescent health,3 all attest

to changing perspectives in the approach to health.; Although neither the nature of the commitment nor the new course is as yet well defined or

funded at a significant level, health programs promise to be different from

those of previous decades.

INTRODUCTION

Xt is becoming increasingly recognized that behavior contributes

significantly to health and illness_ For example, pregnancy outcome is to a

tOirrace of licahlt Information and Health Promotion. Department of Health and Human Services.

2Recent Federal Govemment concerns and activities are reflected in the report of the DHEW

Prevention Initiative (I); the Surgeon Generals report (Z3); and the national Prevention objectives (4).

3See A. L. McArutter (5); R_ I. Evans et al- (6); and D. E. Green (7).

See: L. W. Green (8); Fogarty International Center for Advanced Study in the Health Sciences (9); Departmental Task Force on Prevention (1.10); and P. Lehman (II).

127

1 4 0
large extent determined by the behavior of the mother, and the health

status of her infant will be influenced by whether and to what degree she

uses tobacco, alcohol, other drugs, and prenatal services, and by the

quality of her diet. All of these factors are in part dependent on individual

behavior. In addition, the health status of her infant will depend on the

behavior of health care providers that include prepregnancy immunizations against such conditions as rubella, dietary advice and prescription of

dietary supplements, and counseling in preparation for birth. At still

higher levels, the " behavior" ofsociety at large and social institutions will

also affect the outcome of pregnancy, which depends on the presence or

absence of quality prenatal care and delivery facilities and availability of

nutritious food and environmental pollutants. The same model can be extrapolated for infants, children, and

adolescents (see table 1). Thus, the role of behavior in relation to health is

multitiered and interwoven and ranges from the individual to health care

and other service professionals to large private and public institutional

systems including those that provide health care. Throughout all these

levels of organization, health status will be determined by attitudes,

knowledge, practice, and policyall of which have significant behavioral

dimensions.

The lexicon of behavioral risk reduction contains a host of overlapping

terms that sound alike, but that in reality reflect widely differing goals

including "health promotion," "health education," "lifestyle change," and

"patient counseling." Goals and outcomes of risk reduction and education

programs include Cost containment through a shift away from expensive tertiary

care and through more "appropriate" utilization of services by

patients

Improved health status, including reduction of "at risk" status

through cessation of hazardous habits and behaviors

Promotion of patient rights through increased patient understanding and through protective mechanisms such as "informed

consent" forms Humanization of health care including more personalized and

respectful treatment by health care providers and the encouragement of a patient-physician partnership

Increased participation in health affairs by consumers through

their inclusion as members of health planning bodies, on boards of

health care institutions, and as neighborhood residents and

workers with a stake in protecting their own and others' health

Lessened emphasis on environmental and other protective actions

that interfere with private enterprise and a shift of focus to the

individual consumer

These goals are not necessarily incompatible, nor are they the sole

domain of a single interest group_ They do, however, tend to differ in

emphasis vis-a-vis individual freedom as against the social good. They

place differing amounts of responsibility on individuals and "systems,"

depending on the causal model used, and they cast public and private

sectors and local and centralized governments in very different roles.

128
TAIILE 1. Elebeetkuall Factors and Hada ilitsbas Gaels

MEM Iliedies Goal* Individual Consumers Ileihaviers

Reduce the incidence of morbidity and mortality in mothers and infants

Reduce the incidence of birth defects

Enhance chddhood growth and development

Reduce childhood accidents and injuries

Reduce the incidence of communicable dimmers=

vaccine, preventable

sexually transmitted

Promote dental heel/1h

Reduce the incidence of traumatic injury to and health: motor vehicle accidents

suicide

homicide

lin Prove. preserve. and enhance the

individual's general physical well-being

Ineirove, preserve, and enhance the

individual's general emotional well- being

Reduce the incidence and severity of premature cardiovascular morbidity

and mortality

Reduce environmental hazards

Smoking. nutrition. 31COPICA use, habituating drug use, timing of conception

(child spacing, age of mother), earliness of prenatal care utilization. family development

Genetic counseling/amniocentesis and

subsequent decision, alcohol use.

over-the-counter drug uee

Parenting, nutrition, child care arrangements. breast-feeding decision

Water safety, traffic safety, auto re- straint use, sports safety. home

safety (toxic substances and other hazards), child supervision arrange- ments

immunization use

Sexual behavior and treatment seeking

Nutrition, fluoride treatment use. dental hygiene

Auto restraint use. motorcycle helmet use, alcohol use, driving habits Response to verbal and behavioral warnings. coping/adaptation, stress management Alcohol use, coping/adaptation

Smoking, nutrition, alcohol use, habitu- ating drug use. exercise

Habituating drug use. stress manage - ment, coping/adaptation, social sup- port system participation

Smoking, nutrition, alcohol use. exer- cise. stress management, coping/adaptation

Participation in organizational and po- Utica' processes--health citizenship

°Bawd on U.S. DREW Departmental Task Force on Prevention (8): U.S. DHE1N Office of the Assistant Secretary for Health and Surgeon General (2): and other current literature.

129
The broad term health promotion refers to a range of approa .ales to

improve or protect health including the reduction of environmental and

behavioral risks. More than one set of strategies is commonly employed

for the reduction of behavioral risk, includings Automatic/protective strategies. Among these are the highly

effective public health measures including pasteurization, fluori- dation, and childproof containers for toxic products. It is not always possible to elicit support for measures known to be

effective protection against risks to health especially when

powerful lobbies oppose less well-organized and less well-funded

public interest efforts. Coercive strategies. Strategies that employ legal and other formal sanctions to control individual behavior include mandatory up-to- date immunizations for school entry and prohibiting the sale of cigarettes to persons under a certain age. Public support and

understanding that counterbalance resistance to restrictions of

individual freedom are important to the success of such strategies. Educational strategies. Such strategics are designed to encourage voluntary decisions conducive to health. They may be aimed

primarily at individual behavior change (e.g., outreach to increase utaimation of health care services and prenatal education and

support groups) or they may be directed toward changes in

institutions to promote, enable, or reinforce change in individuals

(such as changing the appointment system in an outpatient clinic

to better meet consumer needs) or to set into motion protective or coercive strategies (such as the organization of affected tenants and health interest groups to enforce existing ordinances forbid- ding the use of lead-based paint in rental buildings). The primary misuse of these strategies is their substitution for needed protective measures, as with overreliance on the principle of caveat

emptor. One major difference between education and automatic/protective and

coercive strategies lies in the principle of voluntarism. That is, "equipping

the learner to take informed and considered action for him or herself"

(13). Consideration of these alternatives must include recognition that people will not always choose the "healthiest" course of action. As

suggested above, community education can complement or bring about the adoption of the other classes of health promotion strategies. For

instance, the recent flurry of legislative, regulatory, and institutional actions to restrict smoking in public places in the United States would

have been inconceivable just 5 years earlier. It was not until there was sufficient public awareness of the effects of smoking on smokers and

nonsmokers alike that actions were taken that were previously viewed as unacceptable infringements on individual liberty. Since the trend devel- oped in part because of community and school health education efforts aimed at the individual it appears that these efforts also contributed to the climate in which a new kind of community action became acceptable.

Srbese categories are adapted from Robertson (

130
"Health education," therefore, enters into the health equation in

relation to the environment, behavior, and medical care. It can be directed

toward

Individuals and health-related habits over which they theoretically have control

Individuals as citizens with a stake in the activities and policies of private and public organizations that influence the physical, social, and economic environment Medical care institutions so as to relate consumers more effectively to the system for early and preventive care, for illness care, and

for governance Local, State, and Federal decisionraakers who can alter environ- mental risks and design and institute other protective measures Adding to the confusion over the definition and scope of health

education is the discrepancy between the views of health educators and

those outside the profession who often think of it as information-giving

and pedantic.. Information is but one component of education, but by

itself rarely completes an educational process. From within the discipline, health education is an interactive process with affective, social, cognitive, and situational dimensions.

Health education has long employed a wide variety of methods primarily community organization, group processes, and is communi- cations. More recently certain behavior modification techniques (such as

those used for changing food habits and in smoking cessation programs) and organizational change strategies are widely used (such as those aimed

at improving teamwork among health professionals and redesigning clinic procedures so as to better meet client needs).

SOCIETAL VALUES

In the formulation of policies and programs directed at educational or other interventions in personal or social behavior the ethical questions

include 6

To what extent is health-related behavior voluntary and, therefore, the responsibility of the individual? To what extent is societal intervention in an individual's behavior

justified? To what extent are coercive interventions justified? With an emerging interest in behavior as a. causal factor in determining health status has come a tendency to focus on personal lifestyle and

personal responsibility. At the extreme is the position that The next major advances in the health of the American people will result from the assumption of individual responsibility for one's own

health_ The cost of sloth, gluttony, alcoholic overuse, reckless driving, sexual intemperance, and smoking is not a national, but an

individual responsibility (16).

6FCC as excellent overview of ethical issues in health education and lifestyle interventions see Faden and

Paden (14) and Simonds (15).

131
With the exception of the poor and the oppressed, whose problems are

acknowledged to result from fundamental social structure, Knowles and

others have regarded individual behavior as completely voluntary.

At the other extreme are those who take the position that health-related

behavior is a response to the larger political-economic structures and

policies, including racim and a market ethic (17-19).

Insistence that individuals are "responsible" for their own health may

stem from confusion of two different phenomenathe relationship of an

individuars health to his lifestyle and his being accountable for his

lifestyle, which logically, therefore, would make him responsible for his

health status. While the former may be undeniable, the latter is much

more problematic. Wilder (20) noted that this could result "in a lessening

of willingness to aid the person whose own behavior has resulted in

illness?' The victim-blaming fallacy in health policy7 is evidenced when

there is undcremphasis of community organization, organization development, and education of policymakers and exclusive concentration on

education of private individuals. In addition, recent health education

studies have tended to emphasize individual behavior change because it is

more susceptible to controlled evaluation than community organization

efforts. Thus, significant issues for health education are related to who

should be educated and for what ends. How much emphasis should be

placed on individual education qua individuals and how much on

bringing about structural change? When is it ethically justified to intervene in individual behavior, and by

what means? Traditionally, a major justification is the reduction or prevention of harm to others or of harm to the individual himself (25).

The "harm-to-others" principle is the justification when community

organizing leads to the use of coercive methods to change institutions (e.g.,

a hospital's admission policies related to its Hill-Burton obligation to

make available a certain amount of free care) or structural relations (e.g., a

State's policies with regard to appointments to the State health planning

commission). The target institutions and policies are presumed harmful.

The harm-to-others principle has been invoked recently with respect to

behaviors previously thought to be purely self-harming because the

soaring cost of illness is increasingly borne by society (25-27). As Pollard

and Brennan put it: As awareness increases that individual A's lung cancer directly

affects individual B's health insurance or tax burden, tolerance for

the free exercise of health-compromising behavior, such as smoking,

is likely to decline (28). The harm-to-others principle is also being applied more broadly in the

courts and among patient advocates and is encroaching upon the tradition

of paternalism in the doctor-patient relationship. At issue is the

withholding by doctors of relevant information, which affects the patient's

ability to make informed decisions about treatments and other procedures

and about preventive actions.

?See Ryan (21) for a discussion of the concept of victim blaming and Gabuster (22) on lead paint

poisoning. Barry (13) on injury and Hertz and Stamps (24) on health services utilization examples_

132 1 -1
Paternalism or prevention of harm-to-self has been the subject of much

greater dispute even when self-destruction is the ultimate goal such as in suicide cases_ One major justification for intervening hinges on the degree to which a person is seen as being capable of making such choices on a rational basis_ Interventions on behalf of children are often justified on the basis that children are considered to be incapable of making rational decisions and in some instances this includes older children. If, for example, a teenager is subjected to intense peer and media pressure to

smoke and has in addition the model of parents who smoke, then it could be argued that the behavior is substantially nonvoluntary (25). Even in the

case of very young children the paternalism of the State has been limited by the right of the parents to determine what is best for their children. Thus, only one State has so far enacted a law requiring child restraints for child passengers in automobiles. One of the pitfalls of paternalism is exemplified by the case of physicians who create excess dependency, robbing patients of ability to

protect themselves. Educational approaches alone may not be considered strong enough action when the harm is likely to be great. However, paternalism without education does not reinforce self-determination and may lead to rebellion and resistance.

SOURCES OF INFLUENCE ON HEAL-r-r-I-RELATED

BEHAVIOR

Natural Influences

The behavior that affects the health of an individual is not performed principally because of the individual's concern for health (29). Thus, there is evidence that influences on a child's behavior, which in turn influence health, extend well beyond those relating specifically to health (30). Exactly how this process unfolds is not well understood. What is known

comes primarily from studies of children's attitudes, beliefs, and behavior at single points in time (31-36) and not from longitudinal studies over developmental sequences. Research on preventive health behavior in

children and adolescents is richest for substance abuse (37) and sexual behavior (38). These works, however, do not provide a complete developmental perspective. Maturation and learning during growth take place in a system of social relationships. This social environment includes the intimate environment, family and friends, the intermediate environment, neighborhood and school, and the extended environment including the massive economic, social, and political structures. The social environment is pervaded with meanings and values, and children learn to respond to their environment selectively and in patterns intimately associated with their social group- ings. These patterns have considerable influence on adaptation, on health, and even on how health is defined.

Imitative or modeling processes are the prime vehicle for social

learning, particularly for very young children (39). The individual is also

133
an active and influential participant in the socialization process. With

increasing age children are better able to assimilate and use information

and to fit their behavior to their own progressively refined and internalized conceptions of what is appropriate (40). Chronological age is an indication of developmental susceptibility to different sources of influence (such as that of peers over parents), readiness for various kinds of learning, ability to distinguish between

external reality and thought processes or others' descriptions of reality,

and ability to make increasingly complex judgments and responsible

decisions (41, 42).

Family

The primary health role of the parent is, of course, that of nourishing

and protecting the infant from hazards and nurturing him or her in ways

that will contribute to a concept of self and trust in the world.. A little later

certain health-related values, health orientations, and habits will begin to

be established including hygienic practices, the taking of medicine and

other treatments, tastes, and associations related to food, when to perceive

of oneself as "sick" or "well" (30, 34, 43), concepts of cleanliness and

safety, and concepts of what constitutes healthful living. Some important beliefs about vulnerability to health problems are set early and are

relatively stable after the age of 13 or 14 (44). A study of child-initiated

visits to the school nurse found that patterns of seeking medical care were

based on those of the child's parents and were quite stable by age 12, and

that the beliefs and behaviors u :wally did not vary regardless of the

specific complaint (43). Although the mechanisms are riz- clear, parental health habits are

associated with later adolescent and adult behavior. For example, based

on studies of the influence of adult modeling of aggressive behavior,

Stokols (45. p. 37) concluded that parents who behave in a consistently

competitive and aggressive manner may contribute significantly to the development of coronary-prone behavior in their children. Parental

smoking patterns predict to some extent their children's smoking behavior

in high school and junior high school (46, 47). The predisposition to the use of marihuana among young people whose

parents use alcohol excessively suggests a relationship between generational norms even though there is a variation in the mood-altering

substances used. Another practical consequence of parental use of

tobacco and alcohol is the greater accessibility of such materials for use by

children. Family characteristics such as the degree of parental warmth, control, and emotional attachment may affect the extent to which adolescents

rebel and adopt anti-authority behaviors such as substance abuse, reckless

driving, unprotected intercourse, and nonadherence to therapeutic regimens. Other research has shown that adolescents with strong family ties

are protected against early pregnancy and that parent-child communication about sex was strongly associated with postponing sexual activity and

with more effective contraceptive use (48). The proportion of regular smokers among teenagers is higher among those whose parents are not

134
present in the home than among those with both parents who smoke. Television is most influential when alternative sources of influence such as

parents are weak or absent (49). Each family or child-rearing group will have certain unique characteristics but in large part, they reflect the culture and subgroup to which they belong- The parents' own childhood experience and current living

conditions, certain of their peers, "experts" such as health professionals, indigenous practitioners, and "veteran" parents such as grandmothers, and the media are among the influences on the content and style of their parenting. Increasingly, however, the traditional socializing and support institutions and interpersonal networks are absent, and few substitutes exist (50).

Other Socializing Agents

The School

Outside the home the school environment probably influences children more than any other organized institution- For the fast time the child is

specifically evaluated and appraised in terms of intelligence and academic

performance and also in terms of personal qualities, habits, and behaviors

learned at home. Explicit health and safety knowledge are usually also imparted in school. The child may have his first contact with a health

professional without his parents. Because school attendance and school work become a child's major responsibility and because illness can serve

as an excuse for avoiding both, how parents and school staff respond to a child's reported illness and the need for care contributes to the formation of illness behavior. After about the sixth grade the influence of teachers and other adults in the schools gives way to the influence ofpeers. In addition, schools have very different "cultures" (51-53), and this

influences general academic and social orientation, discipline, and the development of social groups, all of which have a bear- on health- related behaviors. Schools often bring children from different back- grounds and age groups together who present examples of alternative behavior. In some secondary schools crime and disruptions and access to

beer, wine, and marihuana are common (54).

Television

Today's child watches much more television than the child of 1960 or

1970. The average American child between the ages of 6 and 11 years views about 27 hours of television a week. For those between the ages of 2

and 5, the figure is 331/2 hours (55). Television consumes more tune of American children than the classroom (56, 57). About one-fifth of children's television is advertising, and in a single year the average child sees about 20,000 commercials (58). In addition, program content is controlled by interests that are sometimes at significant variance from

those of the child and his or her well-being. Content is determined in principle by public demand as interpreted by the television industry. According to a recent Federal Communications Commission (FCC) Task

135
Force Report (59) broadcasters tend not to air educational or age-specific

programs directed toward children. In fact, of the stations in the 52

markets examined by the FCC (1977-78) an average of 2.6 hours per week

was devoted to such programing- In the case of the child audience, their

less well-developed sense of taste makes them particularly vulnerable to

unbalanced programing fare that is mostly desserts. In raising concerns

about the negative influences of television it must also be kept in mind

that some television programs (e.g., "Sesame Street") can have a

demonstrably positive impact(60, 61).

There is convincing evidence from a series of investigations that media programing and advertising can have a significant impact on child

behavior (45, 62). Researchers have found that children may imitate or

pattern their behavior according to television character "models" even

when they are not reinforced by family or friends (63). And if one

"follows the money," the hundreds of millions of dollars-600 million in

1978spent on commercial television advertising directed to children

shows a degree of confidence that at least some behaviors can be

influenced by this medium. Older children are more resistant to the influence of the media because

their developmental process and experience increase their ability to be

discriminating (64), but young children below the age of 8 or 9 are by their

psychological Makeup especially vulnerable to certain television advertising techniques. According to the Research Director of the Children's

Television Workshop: By virtue of their lack of perceptual and intellectual, social and

emotional maturity [young children] are also innocent as to the

guiles of others, and therein easily gullible.... They are rendered still

more gullible by their frequent failure to distinguish fantasy from

reality.... [E]xaggcrated claims and distortions as to the qualities of

products are taken as the truth. Their highly limited ability to project

themselves psychologically into the perspective of others, and their

limited experience at bartering, make them innocent of the need to

discount a seller's claims(64). Of particular concern for health is the impact of children's food

advertising where the bulk of the money is spent. Young children are often

successfully influenced to pressure their parents for well-advertised brands

(64). Such pressure apparently does lead to the buying of such products,

and parents who successfully resist such pressure are sensitive to the strain

television advertising adds to their relationships with their children even

though it may be mild and short lived (64).

Other concerns regarding the influence of television on children. include

over-the-counter drug use (65), aggressive behavior (64 67), and smok

Aggressive behavior has been linked conclusively to television (45, ,t

has been suggested that attention should be turned not only to violent

behavior but also to aggressive responses and consequences for socially

acceptable but coronary-prone behavior (45).

In addition to the influences of television messages on children, the

actual time spent watching television limits possible other uses of time.

Sleeping (62), exercising, spending time with family members, doing

school work, reading, working puzzles, and experiencing real relation136

19
ships, including solitude, are among the opportunity costs of excessive

television viewing. While it can be argued that some television enriches the

lives of children, the negative impact appears to be significant and

deserving of further documentation.*

Peers

American children are spending increasing amounts of time solely in

the company of their age-mates. Studies have shown that at every age and grade level, children today show a greater dependency on their peers than

they did a decade ago and that there had been a steady decline in

parent-child interaction over the preceding three decades (50). In adolescence, peer influence grows in importance (69-71). There is evidence that in adolescent peer groups the habits of the dominant members may be rapidly and almost unconsciously adopted (37). Concurrent with the growth of peer influence is a shift in priorities or motives. Whereas health is a stronger motive than appearance among

younger children (8-10 years old), among older children appearance is more important than health (44, p. 43), and health-compromising behavior and risk taking occur in combination with other characteristics of normal development (72). One study of junior high school students found the prevailing peer model to be the single most important variable contributing to the onset of smoking in this age group and parental influence the second most

important (47). Students cite "conformity" as their main reason for starting to smoke (7), and the strongest influence seems to come from

"best friends" rather than from group pressure (6). Social groupings tend

to be fairly distinct and often are divergent in behavior patterns (5, 52). In

the case of alcohol and drug abuse

Illjeavy use of these and other substances tends to be concentrated

among those least engaged in adult-sanctioned activities .. [lit is also related to the way in which deviance can create an alternative culture in which excessive drug use becomes a way of eliciting

esteem from peers just as sports or academic achievement provide

social rewards for individuals capable of excelling in those pursuits

(5)- Two issues deserving of more attention are (1) the role of peers in maintaining or encouraging healthy behavior and (2) the role of other relationships and commitments and self-esteem and assertiveness in

counterbalancing peer influence. For example, it has been found that susceptibility to peer group influence is greater among children from

homes in which one or both parents are frequently absent (SO).

Social-Structural Influences

Socioeconomic status and the spectrum of political-economic organizations all play a role in child and adolescent behavior. Each social and

11Snufses of how families of different ethnic groups. income and education leves, and geographic regions me television and Isar this affects television's influence on children are just beginning under the

sponsorship of the Division &Education Technology. Department of Schscation.

137

1
economic class has its own particular set of customs, and membership in a

class may leave its mark on the individual independent of its indirect

influence via the family (73. 74). This seems to be the case at the onset and

establishment of many forms of drug abuse (5) and illness behavior (30).

There is speculation about the exact causes of these relationships; These relationships can be understood through a variety of proc- esses, some of which ascribe a primary causal ro!e to economic

deprivation. Few would argue with the notion that lack of opportu- nity coupled with exposure to others who attain social rewards cr:..ates anger and frustration. If the person perceives himself to be

responsible for the lack of opportunity, self-esteem may also be damaged [and] anxiety and low self-esteem seem to increase the

likelihood that a person will use mood-regulating substances. Economic deprivation is often associated with hostile urban environ- ments, which may lead physically vulnerable young people to adopt habits like smoking to signify their 'toughness.' But it is simplistic to

assume that the relationship between socioeconomic status and

tobacco, alcohol, and other drug abuse means that in all cases status has a primary causal role (5). A host of organizations may affect "directly the options available to people and/or their awareness of these options and/or ease with which

they make daily, habitual selections" (75). Federal policies affect safety

restraints in automobiles, which businesses or crops will be subsidized, tax

incentives related to advertising, restrictions of the media or on the sale of

certain products, and business decisions about which products to develop

and/or market and which to "bury." State drinking laws and differences

in such laws among neighboring jurisdictions influence the incidence of

drunk driving and the availability of alcohol for young people (3). Finally, there is the unnatural and delayed entry into adult life and lack of

meaningful activity for adolescents that are characteristic of the social

structure in the United States today. The decisions and policies of

numerous organizations influence the formation and maintenance of an

individual's health-related behavior:

Product manufacture and marketing decisions Service coverage decisions by third-party payers Organization of services and accessibility to special groups such as

adolescents Service priorities of health care institutions and health care

programs Health professional training orientation Safety regulations and enforcement Motor vehicle and water-safety education availability Enactment of policies affecting family structure Financial support for schools School curricula policies and school climate, the sum of discipli- nary, homework, and other policies in schools Safety device and contraceptive availability

Juvethle justice systems Employment op7.:artunities and patterns Recreation alternazives

138
Programing decisions by broadcast media Federal policies in support of specific U.S. agricultural products, including sugar import taxes and tobacco subsidies Child care policies of employers and Government

Summary

Health-related behavior is formed through a complex set of

influences: parents and other family members; age peers; socializing institutions such as schools and churches; television; the

subcultural environment and the relationship of that group to the dominant culture; and large: economic and political forces in the extended environment. The extent of each of these influences

depends largely on the age of the child. Family influence is greatest for the young child, with television

and the school closely following. By early adolescence age peers are a dominant source of influence.

Situational factors, e.g., the availability of substances for experi- mentation, amount and quality of adult supervision, a..-ailability of acceptable and accessible activities or behavioral paths conducive

to health, modify other influences. Behaviors are functional, are often interrelated, and have meaning

for the person that is not inherent in the behavior and may not be

related to health, even though the behavior has a health conse- quence. The meanings are learned through social experience. That experience is patterned because it reflects the norms, values, sanctions, and resources to which the dev,loping individual has been exposed. Certain important beliefs, such as personal vuh.-rability to health problems, are formed relatively earlyat least by age 14and

they tend to be interrelated in a system of beliefs, that is, a youngster who has a high expectation of encountering specific health problems has a relatively high expectation of encountering

others.

Implications for Policy and Programs

Child and adolescent health behaviors should be considered in

relation to multiple influences including the extended environment.

An understanding of the meaning and function of a behavior or behaviors is crucial in designing appropriate interventions. The sources of influences on children and youths should be

considered and incorporated into programs or countered where

they are not suitable according to their varying degrees of

influence at the various developmental stages of children's lives. The stage of cognitive, emotional, and biological development of

the person must be taken into account in setting the goals and

choosing the messages and methods of a program_ Analytical and decisionmakin' g skills among young people should

139

5,43"
be promoted and encouraged in order to increase their resistance

to harmful influences. Comprehensive programs that deal with belief and behavioral

systems are more likely to be effective than those that are

categorical or compartmentalized.

Planned Influences

In developing causal models for disease, the notion of a simple and

sovereign cause was abandoned long ago, but it persists in programs

directed at health-related behavior. Programs commonly address only one

set of factors and very often a major factor is "motivation" because clients

or constituent populations who do not behave in desirable ways are

frequently assumed to be unmotivated rather than lacking the means for

acting on their motivation or lacking support for actions they do take (76,

77). Not surprisingly, such motivation-oriented programs tend to have

high rates of failure. There are altogether too many examples of programs that do not reflect

past experience that has been studied and evaluated. Simmons cautioned

against the pitfalls of the current enthusiasm for health education:

The potential of large sums of money being made available could

foster a great deal of inappropriate action taken in the guise of

`education: My fears are aroused because past history has been

replete with simplistic approaches to very complex educational

problems. Millions of dollars have been spent on program efforts

and activities which have been labeled health education when they

have embodied no behavioral science concepts nor health education

principles in their planning, implementation, or assessment of results

(78)- For example, a widely cited child accident prevention program that did

not significantly reduce such accidents failed to take into consideration

the G: es of the parental behavior (79).

Program3 with greater likelihood of success have traditionally included

an intensive community "sounding" process in which the perceptions of

the groups to be served are elicited in order to learn what constitutes

barriers to a particular behavior (80). Three categories of factors have

been identified based on a model of health services utilization behavior

(81) according to the type ofinfluence they tend to exert on behavior (82,

83). Predisposing factors include knowledge and sources of health

information, attitudes, beliefs, and norms and other social and

structural influences including feelings of isolation and powerlessness, which are related to motivation among individuals or

groups. Enabling factors are the resources and skills needed to act on

one's motivation or intention_ Classic examples are access to

health care facilities when needed; skills that improve a woman's

ability to handle childbirth with less stress and pain, and to quit

smoking or using drugs during pregnancy; and child rearing or

parenting skills_

140
Reinforcing factors encourage or discourage health promoting behavior. Ridicule of a diabetic child's regimen may cause defaulting and serious consequences; a supportive nurse or aid may encourage a new mother to breast feed despite a setback; a patient advocate on a health planning board may help someone disagree with health profsionals of higher status and power. These categories are useful in assessing the causes of a behavior. For example, each of the behaviors associated with low-birth-weight/preterm

infants (see table l) should be submitted to a separate analysis such as that shown in the outline of "Factors Influencing Nutrition Behavior During Pregnancy." Another analysis might be made of physicians' ability to

Factors hitheenchig Nutrition Behavior During Pregnancy

Predisposing Factors

Knowledge That one is pregnant Nutrient needs during pregnancy Food sources of specific nutrients Effects on the fetus of maternal nutrition

How to prepare foods to preserve nutrients

Attitudes

Self-confidence

Self-esteem

Desire to improve nutritional practices if deficits are identified

Values

Cultural nutrition practices during pregnancy Family nutrition practices during pregnancy

Perceptions Belief in vulnerability of self and/or fetus to a poor outcome Belief in seriousness of a poor outcome Belief in efficacy of recommended nutrients in avoiding a poor outcome

II. Enabling Factors

Access to prenatal care and adequate nutrition counseling Ability to obtain and pay for food Availability of food supplement programs, if needed Skills in cooking and preparing food Living situation that allows choices regarding food purchase and

preparation

I Ylt. Reinforcing Factors

Support of food choices by family and friends Culturally and individually acceptable recommendations and sup- port from health care providers, WIC counselors, etc.. Assistance from health care providers in obtaining food, if needed Absence of heavily advertised or inappropriately available products. such as starch, which compete with important nutrients

141
promote adequate nutrition among pregnant patients. Factors would

include the degree of physician knowledge of nutrition, ability to identify

deficiencies, ability to review patient routine diet in a nonjudgmental

fashion, and physician belief that maternal nutrition influences fetal

outcome.

Analyses such as that shown for maternal nutrition highlight the need

for combinations of methods of intervention. It is obvious that to be

effective the development of motivation must be accompanied by the

provision of resources and support systems for followup. In addition, because many of the preferred or ideal actions are repeated or are

continuous over long periods of time, reinforcing factors increase in

importance. If a parent participates for the first time in a screening

program for a high-risk child and followup screening is important, it is

necessary that the first experience be positive and encourage that parent to

return.

Dimensions of Behavior

Another aspect of the behavioral "diagnosis" process is the characteristics of the target behaviors, some of which are frequency, persistence, timeliness, quality, and range. Table 2 presents each of these with

examples and a listing of the most effective methods for influencing that

category of behavior.

Characteristics of Effective Programs

Several other principles for planning effective health education programs are by now axiomatic. However, many programs still do not take

them into consideration. These are Participation. The early participation of both consumers and

providers in identifying prob:ems, assessing their causes, and

anticipating obstacles to improvement will increase the probability that the health education program will have relevant and

realistic goals, employ acceptable methods, and reach its goal. Appropriate level of intensity and duration of program. If the

program does not reach the required minimum or "threshold"

level of effort, not only will the investment be wasted, but failure

may make subsequent attempts even more difficult. Likewise,

there may be a point of diminishing returns as when, for example,

home visits are continued beyond the time when they are effective

(85) or when excessive consumer participation is required such as

when a group seri has too many sessii:bns and a high dropout rate

results (8, p. 26). Integration. Education programs are stronger when they are

integrated into larger program systems, because it is more likely

that enabling and reirforcing components will exist and be

accessible and that there will be overall consistency of message.

142

Sum= 2ry

Effective educational programs ( I) are based on a systematic assess- ment of the causes of behavior that contribute to the health problems in question, including the real or perceived limitations in options or opportunities for acting in health-enhancing ways; (2) coordinate educational methods designed to address a balance of predisposing, enabling, and reinforcing factors; (3) include procedures ensuring that the group(s)

to be affected by the program participate in planning it; (4) provide the minimum level of program effort needed for effectiveness; and (5)

emphasize informed decisionmaking over behavioral prescription.

APPROPRIATE AND EFFECTIVE CHANNELS FOR

INFLUENCING HEALTH-RELATED BEHAVIOR

Health care facilities, schools, mass media, and the community are

important settings for health education individually and in combination.

In fact, it is difficult to achieve an adequate level of enabling, re: aforcing, and predisposing influences within a single setting. School-based programs ideally need the cooperation of parents and other community forces and, likewise, it is easier for parents to achieve their goals for their children's health behaviors when the school and media are playing active

and positive roles. A synergistic effect often results from coordinated or at

least parallel efforts by several of the channels, because social norms begin

to facilitate and reinforce individuals and make it less difficult than acting

alone or counter to one's social milieu and because enabling factors will

usually receive attention and action. Table 3 provides two examples of health goals addressed through these

channels to illustrate the complementarity of various efforts.

Health Care Settings

Health care delivery settings are obvious channels for initiating health

education and responding to expressions of interest on the part of children

and parents. Although these channels are not universally accessible and

remains episodic and crisis-oriented for some populations, they are nonetheless highly important means of reaching many pregnant women

and young children and some adolescents, including a substantial number

at high risk. In contacts with health care workers and other patients there would appear to be many times when interest and receptivity to

communication about health matters is high. These are also underutilized

channels, because of professional orientation and training; incentives, including financial incentives; and the organizational structures in which

a large proportion ofhealth care is provided. Many people want and place high value on health information from

health care providers (86, 87), particularly doctors (88), and, although lay

networks and certain other types of expertise such as that resulting from

experience sometimes compete with the advice of professionals, health

144
1111 lel VIII MIMI

care, smoking, alcohol

and drug use, including

over-the-counter drugs,

exposure to x-rays, and

occupational hazards

Family planning (especially adolescents)

Decrease childhood accidents and poisonings

Viarinr1114 Wig 1091111V nil II

fertility patients and other

women planning a pregnancy, for women with

positive pregnancy tests

planning to continue the

pregnancy (e.g., in family

planning clinics), or during regular prenatal care

Outreach to high-risk

groups; anticipatory counseling by primary care

provider

Advice to parents about

car restraints and other

safety measures as indicated developmentally

it nrilisitIMR01 I ii 1 kol 1111.11.

education classes

tion through other

zations that react

women to increas

al awareness

Education for par'

to discuss sexualr

family planning wi

dren; counseling

cuasion groups th

youth-serving orga

tions, including thi

boys

Swimming classes,

ter safety instructi

Car seat loan programs

Mail campaigns, e

National Safety Cc

Child Safety Club

Babysitting training programs

WOW!

Child Safety Club

Babysitting training programs
care providers would seem to be in an unusually favorable position to

offer health education to their patients. In fact, many health professionals are beginning to appreciate the extent to which the behavior of their clients influences their health status and to want them to know and do

more to maintain and improve their health. Despite increasing recognition of the role of consumer behavior in the

success of therapeutic regimens, early detection and diagnosis, and regular primary prevention services such as immunization and contraception and despite increasing educational activity by health care institutions and providers, education and counseling services are often inadequate, particularly for high-risk populations. For example, only a small percent- age of pediatricians routinely recommend car restraints for children (89). One-to-one counseling is by far the most common health education method used in clinical settings (90), yet actual application is often

limited, of poor quality, and lacking in coordination. Other methods that may be equally or more effective are used infrequently. For example, group discussion has long been recognized as a powerful educational tool in medical care settings and with a wide variety of groups, including

parents of children with rheumatic fever, asthma, and leukemia, mothers

in child health conferences, and children with diabetes (84 pp. 29-30). However, use of group discussion tends to be low even in the many

settings having large enough numbers of persons with common interests or health problems to be able to schedule them for group appointments and

having qualified personnel who could serve as discussion leaders. In addition to scheduling patients for group visits, rearrangement of the

traditional appointment sequence can be highly effective. The "exit

interview" with a nurse or trained layperson used widely in planned

parenthood clinics to clarify and reinforce medical recommendations is highly effective in improving adherence to complex instructions (82). Written and other audiovisual materials are often underutilized or

improperly utilized (91). Such aides can be effective in conveying

information and for clarifying and reinforcing personal communications, and much creative work has been done, such as a workbook for asthmatic children, Teaching My Parents about Asthma (92) and storybooks to

prepare children for hospitalization. Other tools include telephone-access

libraries of recorded messages, audio cassettes in a variety of languages according to client needs, and areawide cable television programing for hospital patients (91).

Health Education Services of Demonstrated Effectiveness

A wide range of health education services contributes to optimal consumer behavior.9

Outreach to consumers. Evaluations of EPSDT programs have demonstrated the dramatic differences in numbers of clients, with

and without outreach (99, pp. 13-15). Recruiter: at of new clients

9See also Skipper and Leonard (93); Somers (94): President's Committee on Health Education (95):

Redman (96): Green (84): Mathews. et at (97); and Deeds. et at (98).

146
to appropriate programs such as contraception clinics for adoles- cents beginning sexual activity (100), followup with consumers via

telephone or postcard reir4inders of return appointments (101), and home visits to assess environmental factors and enlist family

support for therapeutic regimens (8Z pp. 208-210) have been

demonstrated to be effective outreach measures.

Consumer education combined with erganizational change to

achieve optional utilization of services. Yale's School of Medicine

initiated a family health care program that included nurse

counseling and other health education, health maintenance, and

employment assistance and that resulted in significant and

positive changes in utilization of services (102). In yet another

instance, in a large Health Maintenance Organization (HMO), orientation programs for consumers combined with training for health care providers and changes in service procedures resulted

in more effective utilization of telephone services and routine

examinations (103). Changes in procedures such as substituting an individual appointment system for a block or drop-in system, clarifying procedures so that staff are able to give adequate and correct explanations to patients, developing methods for keeping track of vital information, and establishing routines for encouraging

preventive counseling have resulted in fewer broken appoint- ments, increased responsibility of patients for their own care, and

reduction in the number of unnecessary visits or medically

inappropriate visits (notably to the emergency room) (104). In

addition, measures to improve and maintain staff and employee morale seem to have a positive impact on staff-client relations

(105-107). Consumer education to improve member management of com- mon minor ailments. At the Columbia Medical Plan, parents are

trained to obtain throat cultures from their children with the

objective of identifying group A, beta-hemolytic streptococcal

throat infections promptly. A study revealed equal competency

between practitioner and parent, no underutilization or overutili- zation, and decreased contagion in siblings (108). Educating parents about first aid and home treatment for minor childhood ailments has led to increased satisfaction by both

parents and providers and decreased utilization of services (109). Telephone consultation has the potential for self-care education as well as reassurance (110), and is one of the resources that is less available to poor parents than to middle class parents (table 78, volume HI of this report). When patients or parents are able to

tele-T.)1.1one health care facilities for advice before (and sometimes

instead of) coming to the facility, fewer use unnecessary medical services (111. 112) and more get care earlier. Consumer education in primary prevention including anticipatory guidance for behavioral and maturational adjustments. One hospital post partum program that included discussion of family

147
planning 2-3 days after delivery and a brief followup visit the next

day resulted in a significant increase in contraception usage (113).

A counseling program for women having abortions also resulted

in significantly increased contraceptive use (114). Parent education programs on the use of car seats for infants have been

moderately successful (115, 116). The emphasis on primary

prevention education in the Panel's recommended periodic health

services for well populations underscores the importance of such

services. Supportive services before and during stressful medical and

hospital procedures. Parents and children given a combination of

systematic preparation, rehearsal, and supportive care prior to

each stressful procedure were significantly less upset and more cooperative than a control group (117), and ' ntirnber of other

studies have shown similar results (93). Education to improve decisions with regard to medical procedures

and therapeutic regimens. Many factors are associated with

adherence to a regimen (118), but a number of evaluations of

educational programs for parents and for parents and children

suggest that adherence can be influenced positively. For example,

at Roosevelt Hospital in New York an education program for parents of children with asthma was effective in redt. zing

emergency facility utilization (119). In a clinical trial of vaccine

for swine influenza "children ... (aged 6-9 years could) be

involved meaningfully . in decisions related to informed consent.

while the final decision may be made by an adult" (120). "The

question and answer period demonstrated that children functioned in a group fairly adequately as a human

subjects review committee." Education for governance. Mandated consumer participation in

ciecisionmaking bodies has resulted in both superficial compliance

and adaptation by health service agencies (121, 122) and meaningful integration of lay and professional decisiorunaking and policy

development (122). While not all situations are responsive to

educational approaches, training and otherstrategies can increase

the effectiveness of consumer participation (123. 124).

Implementation

If counseling and education are to accompany prenatal care; if

guidance about child development, parenting, safety, and home care is to

be included in infant and child care: if counseling about risks and

anticipated developmental challenges is to accompany periodic examinations; and if education for disease management, including family support

is to be a part of care for all children, adolescents, and pregnant women

with chronic or acute conditions, then certain features of the organization

of services, funding, accountability, and professional training must be

considered.

148
Organization of Servicesi°

Certain attributes of health care services facilitate optimal consumer behavior and make it more likely that the full range of educational services is offered. When, for example, 43 percent of physician office visits by children and youths under 15 years of age for medical or special examinations and 66 percent of the visits for bronchitis, emphysema, or asthma are 10 minutes or less (table 84, volume III of this report), then

counseling is severely constrained. Among the 25 percent of a high-risk population that do not have a regular doctor at their usual place of care

the basis for a relationship is missing. Several organiz. ational attributes are noted here to emphasize their effect on health behavior.

Comprehensive, integrated provision of primary care increases the capacity for delivering coordinated health education programs via

appropriate staff, effective and efficient methods, and with needed

adjustments in organizatibnal procedures. Intraorganizational and interorganizational arrangements that facilitate continuity of providers and of followup increase client motivation and ability to carry out medical recommendations. es Removal of barriers to access, including increasing telephone

access, enactment of minors' consent statutes, and pluralism in

types of organizations (e.g., special family planning clinics and

family planning services offered in primary care contexts) in- creases the use of preventive services. Participation of clients in development of health care institution

policies, in deciding on the directions of specific programs, and in

individual encounters increases the likelihood that the services will

be acceptable and suited to the needs of consumers, and that part of the responsibility for care and followthrough is assumed by

consumers.

Accountability for the health status of a specified populaticn whether defined by geographic area or enrollment, increases

likelihood that providers will be more aggressive in outreach and

followup and will consider consumer behavior to a greater extent.

Funding

Health education services require specialized professional training and

utilize scarce staff time and, therefore, should be reimbursed or otherwise

funded. Federal efforts to develop mechanisms to pay for health

education in grant programs should be encouraged_ Specialized educational programs in any setting where their effectiveness has been proven

should be reimbursable through third-party payment systems. Clinical settings over which there is considerable governmental control are logical settings for emphasizing educational services because prerequitOFor a discussion of the effects on care of the organization and structure of health care settings see

Dutton in this volume.

149
sites for funding can include the requirement that health education

services be provided and the clients are at high risk. Because a larger range of disciplines can participate and because it is often possible to assign

responsibility for overall coordination to a trained individual, it is easier to

fund such services within existing facilities, and there are more incentives

for emphasizing consumer behavior. (For a discussion of educational

programs for mothers and children in organized settings, see Lefkowitz

and Andrulis in this volume). Special funding may be needed if health education is to be a required

rather than an optional service for Bureau of Community Health Services

primary care grantees. Securing this funding through a preventive service

"module" or budget line rather than simply increasing funding would be

desirable because it would protect the extra funds from pressures to use

them for medical services and leave open the possibility of channeling the

funding to center consortia in cases where the individual centers are not

large enough to provide the most efficient types of services. The maximum

incremental cost for providing every Community and Migrant Health Center user with needed health and nutrition education services is

estimated to be $734 per client per year with a total cost of 541.8 million

in 1981 dollars for all users in all centers (updated from DHEW Task

Force on Prevention estimate, 10, p. 32)." Of the nearly 1.6 million adolescents served by tamily planning projects

(Title X), a large proportion are estimated to have no other regular or continuous contact with health care services. Formal recognition of the

larger health promotion/disease prevention role these clinical services can

play, and in a number of instances already are playing, is expected to be

reflected strongly in the 1980 Project Guidelines. In order to utilize these organized settings to their fullest potential, additional staff may be needed at least on a consultation or regionalized

sharing basis. Health educators or persons with appropriate experience and training should occupy an increased number of positions with the National Health Service Corps. The current number is negligible, and

several regional offices (e.g., Region III) have been requesting such NHSC

personnel for a number of years in response to clinic demand.

Health maintenance organizations are required by legislation to provide

a wide range of services, including nutrition education and counseling, health education services, and education in the appropriate use of health

services and in personal health care (Title XIII of the Public Health

Service Act). Even without monitoring there are a number of good programs related to maternal and child health, although adolescent

programs are rare. The principle of reimbursing for patient health education services

provided to inpatients is becoming increasingly accepted. In fact, hospitals

can fund such services that are "integral to patient care" as a part of their overhead. Half of hospitals responding to a survey conducted in 1978

The entire preventive services package should include preventive health screening and protective

services. preventive dental services. medical social services, and environmental services.

150
reported having a department or unit to coordinate educational services (90).12

Funding patient health education services as a component of ambulatory care is much more problematic. A large part of ambulatory care is paid out-of-pocket by individual consumers who do not necessarily see

education as a high priority service. Many counseling and education

services must be hidden with "creative accounting" for the sake of third

party reimbursement. As a question of policy, however, the definition of services and implementing initial steps leading to eventual reimbursement would seem to be a wiser course of action. Governmental and private activities toward this end have begun. Criteria for inclusion of health

education in the schedule of health care service benefits under Medicaid

have been proposed in several States (e.g.. California Conference of Local Health Officers, 128). Several local Blue Cross plans are experimenting with special reimbursement for outpatient education services for selected

chronic diseases. A commercial insurers group has been deliberating on

reimbursing such services, and their investigation has also included

incentives for their policyholders to obtain preventive services and to

develop healthy behavior. The last is severely hampered by the fact that private health insurance is usually purchased by groups rather than by

individuals.13 Problems of defining services and eligible providers and

effective monitoring militate against a recommendation that education

and counseling be reimbursed across the board. A more prudent course is sponsorship of demonstration programs by the Health Care Financing Administration for a defined set of counseling services such as those for prenatal and infant care. The demonstrations should allow for the provision of these services by pet sonnel other than physkians in

patients/parents teaching and discussion groups; capitation should be one option, and outcomes should be measured as well as costs.

Quality Assurance

Health care workers are not yet accountable for their educational function, either through quality assurance mechanisms or in the eyes of

their clients. For example. a practitioner may not even know the

proportion of his or her patients who adhere to their prescribed regimens

(118), much less accept any of the responsibility for nonadherence. The use of outcomes as a measure of quality would shift the focus to patient adherence to regimens and to educational services and would give health

care providers responsibilities beyond diagnosis and prescription. Although there are problems associated with outcome assessments_ in.-074ciing decisions about what to measure and at which points in time to measure it, increased emphasis on outcomes as related to process is essential

statements for reimbursement for inpatient education are found in documents from the

Blue Cross Association (125). the Health Insurance Association of America (126). and the American

Hospital Association (127).

"Personal conversation with Robert Johnson. 22 July 1980.

151
As noted elsewhere in this paper, client participation in the development of institutional policies and programs and periodic client surveys are

other important modes of quality assurance. These often provide a

necessary basis for improved client-providerrelationships.

Training

Increased emphasis on patient/parent behavior requires a reorientation

of professional training. Much has been written about the deficiencies of

health professional-patient communication, particularly with respect to

disadvantaged groups (93, 129-131). Lilcewise, the effects of good

communication have documented (132, 133). Improved outcomes

are most nicely when health professionals' attitudes and expectations

support the patient's motivation and abilities to contribute to *be

treatment process and reinforce this contribution; when the management

of the illness is conduc-,-.d. jointly, and patient decisionmaking and selftreatment are actively encouraged; and when the medical resources

provided are useful to the patient and can be put into practice by the

patient (120, 134-141). One solution is to make greater use of nonphysician personnel. For

reasons of motivation, training, effectiveness, and cost, midlevel practitioners, nurses, pharmacists, and other health workers may often be better

choices for the pro-.-ision of certain types of individual counseling, group

discussions, and skills developm....nt services. In addition to health

professionals, trained laypersons with similar experiences or problems in

common can contribute the educatic . of clients in medical care settings

(142). Willingness on the part of physicians to delegate a part of their

educational role is crucial. Many other disciplines are already improving

their preparation as patient/parent educators. Nurses have traditionally

claimed this role and are improving their train' ing to better fill it (143,

144). The professional training and r---ziali2r-n tion of physicians is important in

and of itself and also as a m, le for other health care professions. Two

major alternatives for trainee =s exist: (I) identifying the characteristics of

"ideal" pediatricians,. family practice physicians, and other primary care

clinicians and ensuring that applicants admitted to training programs

possess them, and (2) planning curricula to impart such characteristics to

all trainees. The admissions policies of medical schools should be altered

to increase the numbers of students with broader social backgrounds and

to give higher pric-rity to applicants who have specialized in the behavioral

sciences and to :hose with experience in interpersonal skills and sensitivity

to other lifestyles and cuhures.

Training in family practice, pediatrics, and internal medicine now

includes some courses in communication and the behavioral sciences,

home visits, and assignments in community agencies (145-147). Current

Federal guidelines for family medicine and general pediatrics programs

require training in "ambulatory care; psychosocial skills; and topics and

related nonchnical areas relevant to the practitioner of family medicine"

(148, p. 14 and 149, p_ 19). Controlled evaluations such as one conducted

on a tutorial program /for .medical residents to improve their educational

152
skills with their inner-city hypertensive patients are needed to improve the direction for these efforts and to establish their effects. The tutorials

resulted in increased educational efforts on the part of the residents, increased adherence to regimens on the F -art of the patients, and

significantly increased blood pressure control (150).

Summary

Despite its acknowledged potential aad despite increasing adoption by health care institutions and providers, health education is still too rarely

planned and too rarely done well in* such settings. The range of methods widely employed is narrow and inefficient; the importance of consumer behavior to the success of a therapeutic regimen, to early detection and

diagnosis, and to primary prevention receives scant attention. If the medical care channel is to contribute more actively to the health of its clients, several factors must be addressed: the orgz,, ...,zation of services, funding, provider accountability, and provider selection and

training. Among possible options are

Increasing grant and National Health Service Corps staff support for comprehertswe primary care programs Adding a prevention and health education budget line and

guidance for Community Health Centers and Migrant Health Centers as recommended by the DHEW Task Force on Prevention in 1978

Adding funding and guidance for educational components of maternal and child health, children and youth, and adolescent pregnancy programs and recommending stricter monitoring of outreach services

Initiating demonstration projects for Medicaid reimbursement of prenatal and infant care services, including education. The

demonstrations should allow for the provision of these services by nonphysician personnel in patients/parent teaching and discus- sion groups, and they should measure outcomes as well as costs Encouraging such funding experiments by private insurers Continuing to fund recipient-consumer advocacy groups for monitoring and representing the interests of their constituencies in

the development of policies and regulations Continuing to require training in patient education and school health as part of family practice and other federally supported

residency programs and conducting evaluations of selected resi- dency and other clinical training for the teaching of patient education to health professionals Developing and funding continuing education programs in health

education methods for National Health Service Corps personnel

School settings

Approximately 55 million children from 5 to 18 years of age or 95

percent of all children in the United States are in elementary or secondary

1 "6 153
schools. An additional 400.000 poor, preschool children are enrolled in Head Start programs. With their long-term_ continuous contact with well children, the schools are logical places in which to influence health and

health behavior positively_ Indeed, the concept of health education in the public schools has strong and widespread support among professional and voluntary health and education organizations. The American Academy of Pediatrics, the American Dental Association, the American Heart Associ- ation. the American Lung Association, the American Medical Association, the National PTA, and the American Association of School Administrators have policy statements supporting school health education.

Health education has been a regular part of school life for many years. Earlier in the history of U.S. education, health was considered one of the basic subjects. As long ago as 1911, for example, representatives of the American Medical Association met with the National Education Association to consider the best methods of improving and maintaining the health of pupils in the public schools. School health including education did not receive the attention it deserves at the Federal level during the 1960's and

early 1970's when Federal involvement in education increased dramatically and, until recently, health instruction was done by teachers not prepared in that subject area and usually emphasized cleanliness, "good groo..ing." and the names of the parts of the body, and overstat,..d

sometimes inaccurately the consequences of "bad habits." To date only 18 States require comprehensive health education in grades K-I2 (table 45, volume III of this report). Today those responsible for health education are employing more

sophisticated approaches and objectives. Important advances are being made, such as a series of studies that show a significant impact on the numbers of adolescents who begin to smoke (151, 152). There is increasing

support for implementing the concepts of the landmark School Hecith Education Study (153), which was framed around the fundamental concepts of growing and developing, decisionmaking, and social interaction. In contrast to somber attempts to impress upon students the risks associated with smoking or other behaviors, these approaches share an

emphasis on resisting media and peer pressure about smoking and on the positive benefits to health_ School health promotion can take many forms: formal classroom

education, supervised field experiences, peer education, education as part of the delivery of health services, physical education activities. and

teaching in conjunction with food services. Even though many schools and school systems are overburdened and imbued with a back-to-basics philosophy, many national parent, educator, and health professional groups have urged that all schools take action to strengthen health and

safety education.

Components of Health Promotion in the School

Sc--ool Climate

Schools have an "infracurriculum" in addition to the avowed formal

curriculum, that is, the attitudes and values schools convey to their pupils

154
(and to their teachers, parents, and the comm..,nity) by the way they

actually treat them (154). If a school takes personal relationships seriously and not only

discusses them within the curriculum but works to achieve good

relationships between staff and pupils, then there is some chance

that young people will take these seriously in their working

lives.... If a school takes the trouble to make all pupils feel they

matter and have a unique contribution to make to the community, it is lessening the chances that they will endanger their own health or

that of others by indulging in frisky] practices which make them feel

more adult. Self-esteem is a very important factor in regulating basic

human drives and appetites (53). With regard to sex education. implicit messages conveyed in the manner

in which teachers handle sexual incidents (e.g.. kissing, swearing, and

looking at girls' underwear) affect the attitudes that the students develop

toward discussing sexuality. The effects of the traditional disciplinary

approaches to the control of smoking in the school setting have not been

systematically explored, but it appears that at best they are ineffective and

may even contribute to continuation of cigarette smoking in some

students (6). Other studies (72, pp. 45-48) and teachers, school administrators, and others who work with youths have concluded that schools can

exert a "protective influence" on students who are at high risk for delinquency and other problem behaviors such as drug abuse.

Classroom Instruction

In their enthusiasm to find solutions to existing health problems and to meet the most immediate needs, many official and voluntary health

agencies and organizations have developed teaching materials especially

for school use. Many are well planned and have been helpful in filling a

void.

This is especially true when pressure builds in a community to have the

schools 'do something" about drugs, sex, smoking, and alcohol. However.

the number of health problems deserving special consideration in the curriculum has become so great that these very teaching aids and materials can interfere with the development of a comprehensive and

continuing health instruction program required to meet the many health

needs and problems of today's children and youths. Too often stop-gap

measures result in the hastily scheduled 2-week unit or one-lecture type of health offering to cover a specific problema problem forgotten the next

year in order to concentrate attention on something else. This has been a pitfall in Federal funding as well. To be effective, health instruction must

be on a continuing basis and not a crash program. Fragmented educational efforts are even less effective than fragmented health care. Federal and State health and education agencies nec...: Co

promote a unified approach to school health education, a program of health instruction organized and scheduled in such a way that there is

coordination with other academic subjects in scope and sequence through

the school years. In some States (Florida, Illinois, Oregon, and California, for example) such programs have been developed. Provision has been made for

15S
inservice and preservice education for teachers, updated teaching materi- als, and other factors that strengthen school health instruction. School districts, such as Pinellas County, Florida; Baltimore, Maryland; Huntington Park, California; and Shawanee Mission, Kansas, provide exam- ples from among a number of excellent local programs. Good health education curricula reflect a developmental perspective, including anticipation of certain behaviors at certain ages, emphasize decisionmaking skills for young people in the face of pressure from peers and the media and negative parental influence, and encourage ire active

involvement of students (72. 153). The notion of "inoculating" children

against peer and other influences to adopt such habits as smoking, drinking, and drug use through curricula timed just before the pressure is

likely to occur (e.g., fifth or, at the latest, seventh grade for smoking is paying off in several carefully evaluated antismoking program,. noted

earlier.

Curriculum content is certainly a matter of local determination. Ideally

the school health programs would adhere to national health goals and

curricula would include: smoking, nutrition, alcohol abuse, drug abuse, driving (safety), exercise, human sexuality and contraceptive use, family development, risk management, stress management, coping, enhanced

self-esteem, and environmental conditions affecting health (10, 155 p. 9). The same basic concepts and teaching and learning skills underlie a number of these issues.

The more effective curricula include the teaching of critical health skills

(e.g., 156. 157). As one educator put it, "the decision of a sixth grader to

smoke is probably more a function of skills related to self-understanding, dealing with peer pressure, and decisionmaking, than with an understanding of the dangers and risks of smoking" (158).

Sex EducationI4

The teenage birthrate is declining, even though the proportion of sexually active teenagers is increasing, but a large part of this decline can be attributed to abortions rather than to the use of contraception. Thirty- eight percent of black and 14 percent of white adolescent girls have had

sexual intercourse by age 15 (159), before most sex education courses are offered. About one-half of all conceptions of teenage girls occur in the 6 months as ter first sexual intercourse (160), and many of these young women and their partners are not knowledgeable or mature enough to use any form of contraception. Among adolescents there is an increase in the

incidence of sexually transmitted disease, in the number who report ever having sexual intercourse, and in the number of sexual partners they have

ever had (161). Some form of sex education in school curricula is widespread (162). Seven in 10 never-married U.S. women aged 15-19 have had a sex

14Sex education is singled out for special comment because of the importance of sexual behavior to the

health and well-being of adolescents and any children they may bear at young ages, and because this subject highlights the need for families to play a more active role in preparing and protecting their

children_

156

Lj
education course, almost all of them in school, and about half have hac' some instruction about modern contraceptive methods. Six in 10 have had

some formal instruction about venereal disease and 7 in 10 have had

detailed instruction about the monthly cycle, but only 19 percent could

identify correctly the fertile period in their monthly cycles (163). It seems, then, that most of these programs are too little and too late (48). Sex education programs that have been evaluated tend to be the better ones, and they have shown a number of positive effects: increased

knowledge about sexuality, increased tolerance of the sexual practices of others, but no change in the students' personal values that guide their own behavior, little effect on the amount of various types of sexual behavior such as petting and intercourse_ Courses emphasizing contraception may

increase the use of effective contraception and decrease both the use of

ineffective methods of contraception and intercourse without contraception, and programs actually providing contraception or providing a bridge

to a spy -ific may dramatically reduce teenage pregnancy (162, pp_

1-24

School-based sex education courses should include far more than

discussions of reproduction. They should focus on reducing teenage pregnancy and venereal disease and on facilitating a positive and fulfilling

sexuality, which is not to be confused with the facilitation of sexual activity_ For some teenagers, a more positive sexuality may result from

decreased sexual activity or abstinence_ Thus, sex education should

include the improvement of interpersonal relationships and development of self-esteem, as well as contraception, sexual behavior, the emotional and social aspects of sexual activity, values, and decisionmaking and

communication skills. These tasks clearly require that sex education topics be included in several grades and that parental involvement be as active as possible. Programs that increase and improve the communication between

adolescents and their parents and/or important adults are needed, and

currently such programs are rarely offered through schools_ Those who work with pregnant adolescents and at least one recent study of black urban youths (159) indicate that, although many adolescent pregnancies are unplanned, a birth is not unwanted and not regarded as making life "worse" or "ruined?' The realities of parenting need to be

conveyed more successfully in school programs, including home economics courses.

Health Education as Part of School Health Services

The trend toward expanding health services in schools is gathering momentum_ Model programs, such as those in high schools in Jackson, Mississippi and the inner city of St. Paul, Minnesota (164), and in the

elementary schools in Pomona, California (43), and Galveston, Texas

(165), suggest several advantages of such services for the integration of health education_ School-based health care providers can offer special education for children with chronic illnesses such as asthma (166). Health

service personnel ought to be a source of information regarding health problems and concerns among students and staff for the purpose of

157
developing more relevant health education in the classroom and parent

education programs. School-based health services, whether the traditional school nurse or

full-service clinic. offer the potential for teaching children about self-care,

their use of illness as a coping mechanism, and wise utilization of health

care services (43. 166. 167). The experiments conducted by Lewis and Lewis (43) in California in which children could elect to see the school

nurse without adult interference suggest that although utilization patterns

are set early, based on birth order and parental patterns, there is potential for learning more self-reliance and alternative coping responses to stress

other than a "math headache?' Health services offered through schools

should be offered in conjunction with curriculum components including

those that are oriented toward decisionmaking about using services for

both well and sick care.

Physical Education

Although adult participation in recreational exercise and sport has

reached unprecedented levels in the U.S. in the past 5 years, there has

been a decline in the quantity and quality of school physical education

programs. The economic pinch has produced cutbzcks in State and local funding for physical education and now only one child in three

participates in a daily program of physical education, and physical education is increasingly being offered as an elective at the secondary

school level (4). In a recent ....srvey of New York State elementary schools,

four out of five had not met the State requirements for physical education

activity in the previous year. Lack of facilities and programing is most

problematic in sparsely populated rural =lc-as and congested inner cities.

The consequences of inadequate school programs and sedentary

activities, such as television viewing and inadequate community facilities surface in a variety of ways. For example, the President's Council on

Physical Fitness and Sports offers a simple screening test to identify

children who are considered to be -physically underdeveloped" by reason

of excess weight, muscular weakness, low endurance, lack of coordination,

or some combination of these problems. One of every six children taking

the test fails it (168. p. 4). It is important not only to reverse this trend but also to increase the

emphasis on lifetime fitness and other health maintenance skills for both

boys and girls, which can have impacts far beyond the development of

specific athletic skills. Implemer ,ation of such school-based programs will

require increased commitmt... oy schools and community cooperation, and a reorientation in arrangements for receiving expert advice and

support from such sources as local sports medicine and fitness councils

within school districts (168, 169).

Extracurricular Programs

Schools and community agencies are developing new ways of channeling the strong influence on health-related behavior exerted by peers

158
toward positive health goals. Such programs take different forms ,:ncluding

the education of younger children by trained older students and the

education of age mates by trained student.z_ Some of these programs are very large in scale. For example, in New York, teams of high school students. each with responsibility for its own format, visited 71 elementary

schools, reaching nearly 10,000 fifth and sixth grade students. A peer group model program called "Teenage Health Consultants" in Minnesota

is designed to provide information and training to adolescents who then become health educators and make referrals within their peer groups

(170). This program has been replicated in communities as well as in

schools, and it is concentrated mainly on drug use/abuse, human

sexuality, mental health, food awareness, and community health re- sources_ There are numerous reports of the use of such peer education in

smoking education ( 7. pp. 20-29). Family planning clinics, such as that offered by the city health

department in Berkeley, California, have developed model outreach

education and counseling programs_ Examples from drug programs

include

Project SPARK (New York) is the Nation's largest school -bases drug-abuse prevention program. Strategies include drug education, intervention through groups and individual counseling, training of a peer leadership cadre, home visits, parent workshops, parent/child group sessions, community involvement, curriculum

development, alternative activities, and inservice training for

teachers. Students in the program had fewer absences, fewer drug- related referrals and disciplinary actions, and better grades than a

control group. Port Washington Project (New York) is an alternatives program

offering junior high school youths an opportunity to develop video productions that address the problems they encounter_ In comparison to controls, participants in the program demonstrated an

increased sense of personal worth, reduced their proclivity to use drugs, evidenced positive patterns of social and nersonal growth, had fewer inciden%3 of drug-related deviant behavior, and im- proved their academic performance. Project Pride (Florida) also uses peer counseling as prevention

strategy. The program was designed to complement and supple- ment existing guidance programs in the schools and to take

advantage of the positive influences young people can have on

each other_ Selected student volunteers from 12 junior high and

senior high schools were trained in counseling and problem- solving skills. Peer counseling was made available to youths

through a "rap room" within the schools. An evaluation of the project found that the counselors and counselees who were

involved in the program for at least 1 month showed greater positive change in their attitudes toward self than did a matched

control group_ And, 96 percent of the teachers reported observable benefits for the students as a result of peer counseling. Improved

communication between teacher and student was cited most

frequently.

159
Preschool

Head Start programs and formal day care preschool programs offer

special opportunities to involve parents and to build dental, nutrition, and

safety habits and contribute to a positive self-concept. Head Start performance standards have required health education for the past 7-8

years. and technical assistance consultation and activities guides (157,

171) have been offered through regional offices. Teacher training could be

further improved, with stronger monitoring and more active dissemination

of model materials.

Implementation

Support and Coordination

Federal and especially State Governments can play a significant role in

advancing school health and safety education by disseminating curricula

and teaching materials to local groups of parents and educators.15

Consultants and technical assistance and training teams are essential if

these materials are to receive fair trials. Clearly articulated school health policy or a consistent Federal coordinating mechanism has not emerged in the 20th century. As a result,

at present, there are no clearly defined health-related responsibilities among State education and health departments, schools, the health

systems, and the family. Current Federal efforts to stimulate and improve school health

education are now being carried out by a variety of offices within the

Department of Health and Human Services (DHHS) and the Department

of Education. Within DHHS they include the National Institute of Meatal

Health, the National Institute on Drug Abuse, the National Institute on

Alcohol Abuse and Alcoholism., the Administration for Children, Youth,

and Families, the Office of Adolescent Pr-zgnancy Programs, the Bureau

of Health Education, and the Office of Maternal and Child Health. There

is wide variation not only in subject matter but in appoach, and the

programs range from categorical (alcohol education) to generic/health

enhancement (esteem building, development of coping skills). The Bureau

of Health Education for the past 5 years has conducted comprehensive curriculum development and validation studies primarily through the

establishment of a privately based Center for School Health Education,

and it has funded advocacy projects for the improvement of health and

safety education in the schools through the National Congress of Parents

and Teachers (173). The Department of Education now has an Office of Comprehensive School Health. This office has a very small staff, which is responsible for coordinating Federal school health programs and for working with State

and local education agencies to develop programs in school health. The

Congress also has indicated support for child health education, and the

I5For an excellent summary or available materials and dissemination methods by State. Federal. and

private agencies see Kolbe and l vermin. ( 172)-

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School Health Education Program (P.L. 95-561, Part I) would provide

funding for local and State education agencies to establish demonstration

and pilot projects in comprehensive school health education if moneys were appropriated for its implementation. Coordination of health instruction, health services, and food programs has been difficult because of the traditional separation among educators, health professionals, and nutritionists at all levels. For instance, in 1977

there were at least a dozen Federal agencies providing funds totaling more

than $2.1 ($1.6 billion for school feeding programs) to State and

local agencies earmarked for school health activities or general health funds, which may be spent for the same purpose. There is little

coordination and joint planning among these agencies. In addition, there

is an estimated $300 million that the States provide for school health

activities_ State education plans sb7w little coordination of or priority for promoting health education or primary health care through schools. Funds have tended to go to health and food services, even when a small part is earmarked for training and education (e.g., Nutrition Educ.a.tion

and Training Program, Department of Agriculture). There is, in fact, language requiring formal agreements between local health and education

agencies in regulations for several programs. This tendency may increase with the establishment of the separate Department of Education.

Teacher Training

Only 22 States certify secondary school teachers in health education

(174), and with decreasing enrollment more and more schools are asking

their teachers to teach outside their fields. Elementary school teachers usually lack adequate training for the effective teaching of health

education. Today when children with varying special needs are being

integrated into regular schools and classrooms, the health and develop- mental needs of these children also should be an integral part of teacher preparation and inservice training. In addition, training should enable

teachers to detect problems at an early stage and refer children for assistance. Measures for improving teacher competence in health education

include grants to State and local agencies for continuing education (with

the provision that they enlist the cooperation of the health agency); encouraging States to require preparation in health education for elementary school teachers; and encouraging States to require credentials

in health education for teachers of health education courses at the

secondary school leveL All preschool and elementary school teachers should be knowledgeable about the special needs of children with handicapping and other health problems, be able to detect certain vision, hearing, and other health

problems, and be able to implement a health education curriculum. In

additic . certification of secondary teachers in health education should be adopted by all States which in some areas may imply "retooling" of college faculties to ensure high-quality g.-.zaparation. Only 22 States have mandatory school nurse certification requirements and three others are developing them (174, p. 5). Classroom teaching by school nurses and of

i 7 161
individual children and parents would be strengthened if certification

were required for such nurses and if health education training were a

criterion for certification.

Smommor

The schools are receiving renewed attention as sites for disease

prevention and health promotion at the same time that some of them are

hard pressed to accomplish other basic tasks_ However, many excellent

programs attest to the potential success of health educationas a part of

health services, in the classroom, in physical education programs, in

extracurricular activities, and as a product of a healthy school climate of

discipline and respect for students_ To ensure that children in over 16,000 school districts have appropriate

and high-quality health education, and recognizing at the same time local

control of schools, will require the resolution of certain issues including

agency "turf," teacher and school nurse competency in health instruction

and physical education, and Federal, State, and local commitment to

quality health education. Possible steps include Promoting a working relationship between the health care

services, school food programs, and classroom and extracurricular

health education programs at the Federal, State, and local levels

Promoting the development and diffusion of compreh +siva

school health instruction curricutl through such steps as urging

allocation of funds for the Sc:,: ol Health Education Program

(PI-. 95-561, Part I), which provides funds for State and local

school health education demonstration and pilot projects and by

increasing support for the Office of Comprehensive School Health

Education, which provides technical assistance to State and local

education agencies

Improving teacher competence in health education through grants

to State and local agencies for continuing education (with the provision that they enlist the cooperation of the health agency) Encouraging States to require training in health education for

elementary school teachers Encouraging States to require credentials in health education for

teachers of health education courses at the secondary school level Encouraging States to require that training for school nurses

include adequate training in education Creating incentives for State and intermediate level education

agencies to employ health education specialists Counteracting the decline in physical education programs and

increasing the emphasis on lifetime fitness and other health

maintenance skills Continuing to strengthen the health education component in

Head Start programs through teacher training, better dissemination of model curricula, and project monitoring Stimulating further development of peer counseling and other

extracurricular activities directly or indirectly beneficial to health

162
The Mass Media

The mass media, and particularly television, have a tremendous

potential to influence health. The first concern should be that the mass

media do no harm. The second and almost equally important concern is

that it be used to improve health and safety-related behavior.

Protection

There is widespread agreement on the need to limit or at least to

provide a counterinfluence to the negative effects of programs and

advertising viewed primarily by young children_ There is. however. widespread disagreement over the degree of protection needed and the

choice of methods_ There are a number of methods that can be used to

alter the negative impact of television, including complete and partial bans on airing certain types of advertising or behavior; limiting particular promotional techniques or behaviors; limiting the volume of commercials

for given types of products; affirmative health disclosures and warnings within the context of a given commercial; counteradvertising; and modeling of positive behaviors (e.g., wearing seat belts in automobile ads and pertraying children without sex-role stereotypes). Both the Federal Trade Commission in the context of the proposed

"Children's Advertising Rule" (64. pp_ 42-50) and the Federal Communi- cations Commission ( / 75) have concluded that while bans are remedies of

the last resort, the other alternatives are less likely to be effective in the case of young children. Other evidence suggests that adherence to the Broadcaster's Code has been disappointing. Militating against the use of bans are qt.:estions of constitutionality. a traditional spirit cC caveat emptor, and disputes over jurisdictional authority of potential regulatory

agencies. Counterad-rertising could provide supplemental nutritional, safety, and other health information. The effectiveness of counteradvertising was

demonstrated during 1967-70 when the Federal Communications Com- mission's Fairness Doctrine led to $60 million being spent in 1 year alone

for free television time for antismoking campaigns to counter cigarette

advertising. Despite the fact that time used for cigarette advertising was

four times (176) greater than that of the counteradvertising, there was a decline in per capita cigarette sales in the United States. Consumption

increased again after cigarette advertising was removed from television

and with it most of the antismoking messages (177). It could be that the

two types of communications represented a "two-sided argument." Such

arguments have been found to be more effective than those that present only one side (178). The counteradvertising appears primarily to have

resulted in smokers switching to lower tar and nicotine cigarettes and in

influencing nonsmokers not to start (179). The deterrent effect was less strong among adolescents, perhaps because tilt antismoking messages concentrated on health consequences only and did not appeal to

attractivenessthe more salient motive for this age group.

153
Possible methods of funding counteradvertising include the requirement

that advertisers set aside a certain percentage of their advertising budget

for counteradvertising of regulated products (64) or the levying of a "ratio

of risks to benefits tax," which would be based on the degree of noxiousness of the product (180). In addition to regulatory approaches

there are three other importa.: avenues: education and encouragement of

alternatives to commercial pt °graining and to television as entertainer and

babysitter_ Educational efforts to foster the critical viewing skills of children and to

guide and modify the context of children's television viewing show

promise. These efforts include classroom sessions based on advance

descriptions of shows and accompanied by teaching guides for teachers.

The Department of Education has recently funded four large experimental

projects at the elementary, junior and senior high school, and junior

college levels to develop and test appropriate viewing skills curricula, so

that evaluation of this approach will be forthcoming soon.

There is also some evidence that the influence of teL on children

can be mitigated by parents and teachers_ If, for example, television

violence is criticized by an authoritath c person, subsequent aggression on

the part of the child viewer is sharply reduced_ Other studies conclude that

"television may teach, but the outcome of that teaching is subject to the

views and opinions expressed by parents and teachers... _ Much of the

power of television depends on an unnecessary vacuum that adults create

by omission" (58). A number of yeas ago, local and national groups were mobilized to

form a citizens' lobby to protect children's interests in television

programing and advertising and to promote parental participation in

children's television viewing, including program selection. Families are

encouraged to watch selected programs together and to interact during the

show, further benefiting from comments and reactions. Because efforts

such as these and The Family Guide to Children's Television (57) have

been directed largely to the middle class and because low-income children

spend twice as much time watching television as more affluent children

(181, p. 20), education programs for low-income parents ought to be a

high priority along with programs for middle class parents.

Although segments of the population are well served by the broadcasting system, the children are woefully underserved. The FCC believes that

there is considerable demand for and benefit to society from age- pecific

educational programing, but that this demand is unfulfilled. The limited

number of broadcasting outlets across the country limits opportunities for

program diversity and prevents the development of programs that meet

preferences of small audiences. It is important to realize that the initial

research and development period required to create the level of quality

educational programing of Sesame Street" and other acclaimed programs

is both expensive and lengthy. Lesser (182), however, notes that fewer

resources are necessary once the initial program costs have supported the

creation and production process. Some change is occurring for children

living in families able to purchase cable programing. In the last year. three

different cable program packages have been initiated- For example, "Nickelodeon" provides an entire channel of programs for children, some

164

1 71 -7if"
aimed at each age group, and much of it is educational specifically for preschool children. "`Nickelodeon" offers 125 hours of varied, violencefree material with no advertising. A note of caution over the argument that the so-called "new

technology" will offer a great diversity of television programing, with far more programing being available for children has been sounded by Comstock: In the abstract, they also promise television for specialized and

smaller audiences than those from which broadcasters now reap their

rewards_ Yet there are two unanswered questions. The rust concerns who will pay and how universal access for children will be achieved_ Access to these devices are contingent on family affluence, and what the new technology may bring is two video culturesone, barren

and stripped, for the children of the poor, and another, rich and

varied, for the children of the rich. The second concerns how the ostensibly superior programing will be financed. Television is an

expensive business, and the fractioning of the audience simply may

not result in enough viewers to make new and different programing profitable. Thus, the new technology may come to mean only more of the same. Conceivably, it could even mean less of the sameif the new technology draws enough viewers away from broadcast televi- sion to reduce the investment that broadcasters now make in new

programing. Television not only commands our attention for what we have seen of it, but for the unknown that we will discover in the

future (58). Alternatives to television viewing should be made available. Again, special priority goes to disadvantaged children who tend to live in

neighborhoods with fewer recreational facilities and fewer organized

activities. Increased availability of child care would help reduce reliance on television as a babysitter and companion.

Promotion

Just as the mass media can be a negative influence on health-related behavior, they also have the potential to promote health_ However, a belief in the "power of the media" without consideration of its limitations has led to some expensive failures. There are several answers to the question, "Why can't we 'sell' safe driving, good nutrition, or abstinence

from smoking, just like Pop Rocks or Schlitz?" The goals of advertisers are usually very different from those of public interest or social welfare agencies. Corporate advertising

campaigns usually aim to affect brand preferences only and are

considered successful if just I or 2 percent of the target audience

switches to their brand. Health promotion programs may seek to

change the behavior of a large proportion of the target population

and to influence people to forego familiar and deeply embedded habits or to adopt behaviors that are inconvenient or difficult. Advertisers usually have an advantage in that the desired response

is easily elicited, or they remove as many barriers to a favorable

response as possible. People can respond to such advertising on

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P7 Q
their next trip to the store or by making a single toll-free telephone call. Health activities are usually less convenient, as in the case of making clinic visits during working hours. The resources of health agencies for advertising are miniscule

compared to the advertising budgets of major companies. Commercial advertisers even have the advantage of the cumulative effects of advertising by competitors for the same products. In

competing for the children's aspirin or candy market, they are all contributing to the perception of the desirability of and need for such products.

Meerut for Specific Audiences

The mass media and selected channel within a medium vary widely

according to their audiences and their ability to tailor programs to the needs, interests, and culture of their respective audiences. Television is most likely to reach young children, elderly persons, others who are at

home during the day, and low-income groups. Radio is more likely to

reach teenagers and elderly persons than other age groups. Such selectivity was a major factor in the ineffectiveness of the $7 million privately

sponsored "Feeling Good" series several years ago, which was aimed at

low-income adults. It was aired on public broadcasting stations but very

few people in the intended audience generally watch these stations. The

"Feeling Good" evaluators ruefully drew the following conclusion about

television: "The near-universality of television receivers does not imply a

realistic potential for universal reach ty any particular program." The potential of any program or series is limited by predispositions toward the program concept, availability of viewing time, established patterns of viewing or not viewing public television in general. and awareness of particular programs (183). The cost of such programs must therefore be

evaluated in relation to the cost per appropriate person reached. There is considerable evidence that the mass media are best used to

inform people or to reinforce messages originating elsewhere (184, 185).

The media can i.re effective in changing behaviors that are not deeply

ingrained and for which there exists an easy and acceptable substitute

e.g., switching to sugarless chewing gum or a higher quality snack (186, p. 187). The media are not usually effective in changing complex health behaviors, although some of the audience may be prompted to take the

recommended action and may later influence others. For example, the

literature on the effectiveness of radio and television on automobile

settbelt use has been consistently negative (e.g., 187). Detcrmining content of media messages requires careful study of the

intended audience and knowledge of literature on persuasive communications (178, 188, 189), and diffusion of innovations (184). For example, adolescents are very well informed about health topics such as smoking. Thus, media efforts should be directed not at informing but at helping

adolescents deal with peer pressures (5) and at appealing to other motives. On the other hand. adolescents do not usually have as detailed a

knowledge about contraception. Because of the detail, this information

might best be transferred by magazine articles rather than television.

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The use of television for instruction in school and at home has had

several notable successes. "Scsame Street" and the "Electric Company." both of which receive Federal funding. have increased reading skills and

served as alternatives to advertisements and programs with objectionable content. Success of such programs may be more modest, however. in

influencing health-related behavior. One series on oar,- "Footsteps."

funded by the Department of Education and aired c )roadcasting

stations has been used extensively by comrnunit:, j ns id colleges. Unfortunately. the effects of the program on kno zitudes, and

behavior are unknown.

The production of high-quality media programs for a large number of schools and other iocal agencies that would never be able to afford them is a legitimate part of Government health education activities, but given the high costs and the unanswered questions about their effec!iveness, evaluations should be a required part of such projects. The uses of television are expected to change as package programing, video discs. and cable television become common. These alternate systems are much less expensive and provide a greater opportunity than broadcast television for reaching specific populations, and they are also easier to combine with other educational methods. For these reasons, cable

televisit:n appears to have a potential role in health education ( 190), and

already there is at least one stati.ri for hospitalized people.

Media Other Than Television

Patient package inserts and Plod, drug, and other substance labels are

other media that enable already motivated people to obtain important he:14h information. The new FDA regulation requiring that the contents of commercially sold baby foods be listed on the label, not only allowed

consumers to make better choices, but also led manufacturers to improve

the quality of the foods being sold. Standardization, such as the adoption of a standard and universal symbol of danger recognizable by children, would greatly assist educational campaigns and encourage understanding

and attention. Standardization in packaging consumer information is a

necessary. although not sufficient condition for wise consumer choices and would support continued efforts by the Food and Drug Administration, the Department c, .4 .S.7" utture. and the Consumer Product Safety Commission to improve p !''ling and package inserts. The Department of z-, and Human Services is increasingly

redefining its role as a "v,:. saler" of health information and is currently considering ways to this information through other more

influential channels. Interrned.;.ary or "access" groups such as labor unions. health care institutic.ns, community organizations, PTA's, and the

like have special credibility for certain populations and the ability to

-translate- messages into the frame of reference of their constituents. Under this approach Federal support to intermediary groups includes collection of infrrnation and consensus building: determination of high- populations in order to ft:)rmulate appropriate basic messages; and the provision message testing services and the conduct of program

evaluat:onr. This is more efficient and effective than general program

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1
that do not reach large subpopulations. In addition, such an approach also

encourages the building of m.o., networks that could continue autonomously even if Federal moneys are shifted to other priorities.

Surrunsury

There is a need to increase the protection of children against media

influence leading to unhealthy behavior. Such measures could include the

following: Requiring counteradvertising- for commercially advertised products that are harmful to health. The "two-sided arguments" should

be developed under auspices other than advertisers.

Monitoring network programing and periodically reporting to the

public on proglaii: content and advertising on programs that

children often watch.

Modifying license renewal forms to require information specifically about the licensee's programing for children.

Engaging in "jawboning" with th:: networks regarding commercial

advertising, programing balance, and the modeling of healthenhancing behaviors. Limiting the type and amount of advertising directed at young

children. Incrosing support for the "critical viewing" skills to reduce the

impact of commercial and other media messages. Encouraging parents to monitor viewing, to emphasize selective

rather than continuous viewing, and to discuss programs and

commercials with their children.

Fostering the development of alternatives (recreational opportunities and child care centers). Mass media should be used more effectively to communicate healthrelated information and to encourage healthful behaviors by Continuing Federal support for high-quality educational programs of proven value and evaluating the impact of new programs

on behavior

Encouraging the endorsement of healthful products by professional organizations and by characters/celebrities whom children hold

in high esteem

Sponsoring public service announcements and purchasing prime

time (e.g., Saturday morning) for health-promoting advertising Giving higher priority for funding to programs that (a) utilize

multimedia and more personalized methods; (b) take into consideration the ability of the "target audiences" to follow through on

any positive motivation that may develop; (c) select channels with

a high probability of reaching the intended audience; (d) develop

messages carefully, using communications and learning theories;

and (e) include an evaluation component Emphasizing and improving the role of the Federal health

agencies in developing model messages for gro' with existing

credibility in comic and among high-ris.: .k.Sgroups, and

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assisting such intermediary groups in building their capacity to

relate to the health needs of their constituer..-i

Community Settings

The formal and informal structures within the community offer a scale and group identity better suited to certain public education and support

tasks than larger bureaucratic and centralized structures. A wide variety of lay self-help groups, including Candle lighters and other support groups, Parents Anonymous and other treatment groups, the National Welfare Rights Orp ni7aton and other social advocacy

groups, women's health collectives, food cooperatives, and other alternative communities provide examples of the vigor of private groups. In

urban as well as rural artms, a variety of public and private agencies and youth-serving organization; have been involved in health and safety

education. These include Boys' Clubs, Scouts, Police Athletic Leagues, athletic programs of cities and towns, and youth groups in religious organizations. The Federal Education and Parenthood Program, for example, was adopted by many youth-serving groups with positive results. The Boys' Clubs have undertaken excellent alcohol education, immunization, and hypertension- programs. Educational campaigns aimed at social groups can help to change the context in which individuals, particularly children, decide about health

behaviors. Communities, worksites, and families can be assisted in looking

critically at the implicit and explicit messages they convey about health

and acceptable behaviors. It is important to recognize the paradoxical nature of support systems, which can also be destructive or confusing. Health seeking behavior may

be vying with or undermining family or peer relationships, since a support system may itself have some investment in maintaining an unhealthful behavior.

A growing number of youngsters are without very many s -J

support. It is difficult, for example, for an adolescent to adapt to a society

that is becoming increasingly fragmented, characterized by disillusion of community, absence of inconsistent adult role models, rapidly changing

sex role expectations and sexual mores, and few meaningful employment or recreational opportunities. Where once a clear and relatively consistent set of prescriptions for behavior were conveyed and enforced through

tight family and social networks, there are now fewer clear-cut guides for behavior. The credibility of former authority figures has been undermined, and the ties with traditional sources of influence have been weakened.

The task of health education was once to interrupt the normal flow of

information and social influence on health in order to correct some of the

misinformation in "old wives tales" and to raise public expectations for

the newly developed potential of modern public health and medicine. Today the task of health education is to strengthen and supplement

traditional channels of communication and social influence in order to

reach culturally diverse and socially isolated people. Such channels are

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1
needed to interpret and adapt centrally produced health information that

cannot be equally sensitive to the many variations of problems, concerns,

circumstances, risks, values, and attitudes of a pluralistic community and

society. Programs with a strong commitment to empowering individuals,

families, and community groups should, therefore, be given a high

priority.

Community Organization

Organization at the community level has taken several approaches,

depending on the strength of the informal systems, the quality of their

relationships to service and other institutions, and the philosophy of the

agency or group initiating the program. Broad involvement of people for

determining and solving their own problems, building consensus among

community groups, and increasing interest is one major tactic, based on

an assumption that there are common interests or at least reconcilable

differences. A self-help and family education program in Oregon assisted

communities in learning crucial first aid and home care skills (191):

numerous pr-grams in North Carolina, notably the 30-year-old Farm and

Home Organization of Chatham County, addressed a number of community needs (192); and the Mom and Tots Center described in 9226

KerchevalThe Storefront That Did Not Burn (193) was a communitybased clinic.

Social planning approaches emphasize rational deliberation and technical expertise for solving problems. Fact gathering and data analysis are

stressed over community participation. Such approaches have resulted in

important interorganizational agreements and cooperative enterprises,

which have solved problems of splintered and sometimes conflicting

activities and fined in gaps and coverageinteragency councils on family

planning, smoking, child welfare, drug abuse, and the

At times basic changes are needed in major institL ons and community

practices ant: distribution of power and resources in the community.

Although social action through such agencies as Community Action

Agvucies are in less favor than they were in the 1960's, such approaches

are a 10:gitimate and needed tool for improving child health. Mobilization

of diverse interest groups such as Merchant Seamen and public assistance

beneficiaries prevented the closing of the Public Health Service Hospital

in Seattle in the early 1970's. Various interest groups have successfully

brought about product safety legislation and recall of hazardous products.

Legal assistance action in organized groups of Medicaid beneficiaries and

advocates has stopped Medicaid cutbacks and irapcsition of copayments

in numerous States and brought about the implementation of Early

Periodic Screening, Diagnosis Treatment (EPSDT) programs in others.

Selected Programs and Activities Within the Community

Agricultural Extension

Agricultural Extension has a unique and only partially realized

potential for health education in rural communities at all levels of the

170
population. Its mission is education and community development to help people improve their social and economic well-being. and one of its five goals is family health. There is a cohesive, credibte, anc.1. well-scared

network of home demonstration agents and youth workers, which in many States still reaches small farmers. Health programing has varied over the years. Recently there has been a resurgence of interest and activity, but funding is very limited. Most States have extension specialists working on health projects, and eight States (Arkansas, I..,Guisiana, Pennsylvania, Ohio, Virginia, Maryland, Missouri, and Wisconsin) received special Federal funding for consumer health education projects in various areas of health care services in the early and mid-1970's. In Arkansas, for example, Agricultural Exten.sio was the basis of the immunization

program. In the case study of the hypertension project, one of the many health programs of the active Florida Homemakers Council, the capacity- building aspect is emphasized: Many women attending the workshop [State meeting of the Homemakers Council on Hypertension] came from rural counties and were not totally familiar with their resources. They felt incompetent to initiate a program. The workshop sessions helped them realize that the needed resources were available to them for an

education program on hypertension and a cardiovascular screening program: county health departments ... [etc.]. Through the work- shop sessions they began to gain confidence in their own abilities to plan and initiate local level programs....

Sixteen Homemakers Clubs with membership in the low-income group, three-fourths of whom are Black, have initiated programs on hypertension. The Extension home economics agcnt helps them

understand the problem of hypertension, then lets them decide how

they want to cope with it (194). A longitudinal evaluation of one of the Expanded Food and Nutrition Education Programs (EFNEP) showed that monthly home visits by

nutrition aides for I year were successful in raising the nutritional levels among homemakers in Appalachian white and Eastern Shore olack

families (85), and the study suggests that the EFNEP training and

program objectives could be enlarged to achieve larger maternal and

family health and sanitation purposes.

North Karelia Cardiovascular Risk Reduction Project

One example of a community-wide health improvement project that has captured the imagination of policymakers in recent years took place in a Finnish community with the highest premature cardiovascular death rate

in the world. This project demonstrates the powerful force that can be

exerted by comm.-nifty norms once the initial momentum for change has been achieved.

This project brought about changes in health behavior associated with

cardiovascular risk a-d reduction in cardiovascular morbidity and mortality through a c rnbination of approaches, including increased health information through the media; health education training for personnel working in the field of health, education, and social welfare, as

171
well as in civic organizations; organization of special services (health,

school, social services, and civic organizations); and introduction of

environmental changes (low-fat dairy products and sausages, vegetable

growing, improved diet in institutions, prohibition of smoking in public

places) (195). This project should be characterized as a community development

effort, and it was initiated in response to a petition from the community to

the central Government for assistance, not the reverse.

Channel One

Another example of a nationally recognized project that has included

an evaluation element is Channel One (meaning the community as the

number one channel for influence and action), an alcohol and drag abuse

prevention program for young people. Funded 1. the National I..stitute

on Drug Abuse (NIDA) Prevention Branch through its Pyramid Project

and through the Gloucester Community Develop-merit Corporation of

Gloucester, Massachusetts, Channel One involves the Prudential Insurance Company and its sales managers who work with representatives of

NIDA single State agencies and provide support materials. Channel One

"is a process that leads to a networking partnership among people, the

public sector, and the business sector, primarily on a local community

level" (196). It will be recognized that this is a classic community

development approach that secures local resources and involvement to

provide school credit and, sometimes, a small wage for working and

learning from community projects. That the resourcesspecialist-guides.

materials, and projectscome largely from the community builds a sense

of the community's valuing their adolescents. This project is credited with

encouraging school performance and reducing dropouts and with preventing drug and alcohol problems.

Collective Action for Environmental Protection and Safety Regulations

Public support and understanding are needed for the success, if not the

enactment, of protective strategies to influence health and safety. Public

values in the United States tend to be in opposition to interference in

parental prerogatives and in behaviors thought to be harmful only to the

individual engaging in them. The repeal of motorcycle helmet laws in 27

State legislatures provides an example of the strength of sentiment in some

sectors against governmental regulation of individual behavior. In

Maryland, for example, this occurred despite testimony from a variety of

groups and convincing data showing that repeal brings a 50-percent

reduction in use and a 38-percent increase in motorcycle mortality (197)

as well as substantial injury costs (198). In this case there has not even

been opposition by product manufacturers.

Arguments invoking th. value of "individual freedom" have been used

for mare years to oppose pasteurization of milk supplies, to oppose gun

control, child safety restraints. and fluoridation of water supplies. Studies

of fluoridation decisions suggest that expert opinion alone is not enough

172

I
to sway legislatures city councils when there is division 3f pub!ic opinion (199). Such wealth decisions are Political issues and a broad

public base must be sought. The success of legislative, regulatory, and

institutional actions to restrict smoking in public places in the last few

years would have been inconceivable just 5 years earlier. It was not until

there was sufficient public awareness of the effects of smoking on smokers and nonsmokers alike and sufficient mobilization of public sentiment led by voluntary and professional health associations and agencies that

:ctions were taken that were once viewed as unacceptable infringements or individual liberty. Because financial interests in some sectors oppose needed protective

action and because many citizens are not mobilized to participate in the debate on the side of protection, the voluntary health agencies, health

professional associations, and groups organized around the interests of children and youths need to continue to ei.list public support for and understanding of the need for enacting important health and safety

regulations and then to shift to a reinfc.,:. ement effort after enactment.

Implementation

There are many programs being sponsored by official agencies and

formal and informal voluntary groups which make substantial contributions to the health and well-being of their communities. Some are

stimulated by the production of materials and guidelines by national or

regional organizations, e.g.. the Office of Education's "Footsteps" series on parenting aired on Public Broadcasting Stations and extended to

numerous community groups along with the parent and group leader guides: the National Safety Council's Inner City Home Safety program

developed in Chicago's Cabrini -Green housing development; the p-ogram

assistance given by the Childbirth Education Association of America or La Leche League to their affiliates: and the recent immunization

campaign designed and implemented by the Boys' Clubs of America. Less often publicized are the completely local and unsung cooperative efforts

that enhance life in neighborhoods Two major Federal programs also are noteworthy: Health Planning Agencies and the Health Education Risk Reduction Grant Program. Using different approaches and having different mandates. both programs emphasize local determination of priorities_ citizen participation, capacity - build:azg interagency cooperation. and primary prevention.

Health Planning Agencies

In the National Health Planning and Resources Development Act. P.L. 93-641. Congress established health education as one of 10 national priorities that should be considered in the formulation of national health planning goals and in the development and operation of Federal, State, and area health planning and resources development programs: The promotion of activities for the prevention of disease,

including studies of nutritional and environmental factors affecting health and the provision of preventive health care services

173

1
The development of effective methods of educating the general

public concerning proper personal (including preventive) health

care and methods for effective use of available health services

(cited in Draft Regulations, p. 60) The draft proposed regulations set forth National Health Planning

Coals (notice of availability published in th' Federal Register, October 19,

1979) including Health promotion and disease prevention should be extended

through both individual and community actions with emphasis on

high-risk populations Health promotion and preventive health services should be an

integral component of care provided by health care and other

community institutions The rate and adverse consequences of unwanted teenage pregnancy should be reduced

Communities, working through all available institutions and

media, should strive to avoid the initiation o. he smoking habit

among young people, and to break the habit mong those who

smoke (pp. 61-74, passim) These and other health education-related subgozis and goals )uld

provide even further impetus for the planning agencies to be involved in

health education. A survey of 50 percent of the goats in plans from

approximately 200 Health Systems Agencies (200) shows that there are

already many health education-health promotion goals slated for communities throughout the country. What is not clear is what the quality of the

planning and implementation will be. Some Health Systems Agencies are

already working with broadscale participation on significant health

problems. Others appear to have little concept of sound educational

programing or community action. Another question is the priority that

will actually be assigned these goals, given the pressures for facilities

planning and review activities. Clearly, there is potential for focus on

health education, including community development and social action for

the protective and environmental goals given in many of the plans. There

is also the opportunity for these agencies to identify what health problems

need assistance from outside their community. Technical assistance and training for Health System Agency staff about

community health education, possibly made available through the

regional planning centers; guidelines and technical assistance and identification of resources for relevant community agencies; and the support of

local programs by national efforts are all needed. Diffusion networks of

effective model programs would also enhance programing.16 A broad

range of public health associations and agencies participated in the

development of these voluntary standards, and they reflect a solid public

health approach. including a prominent role for community and school

health education. Unfortt.nately, mental health is not addressed.

I6An important document, which could be used to guide the planning agencies. is the -Model Standards

for Community Preventive Health Services- (201) prepared by DHEW at the direction of Congress in the

1977 Health Programs Extension Act.

174
Health Education Risk Reduction Grants

The Health Education-Risk Reduction Grants Program, was begun in October of 1979 under the auspices of the Cen :cr for Disease Control (Bureau of Health Education) and was funded at the level of $10 million

for fiscal 1980 to enable widespread implementation of programs: mo assist State and local health agencies it initiating, strengthening

and delivering programs of health education-risk reduction activities. The grants will encourage participation and coordination of efforts by public. private, and voluntary agencies involved in health

education to redu the risks of premature death and disability

associated with smot, ; alcohol consumption, obesity, hyperten- sion. stress, and other ... conditions and chronic diseases affecting

the health of the American people (pp. 2-3 of grant solicitation). The grant guiddines emphasize informed decisioiunaking, and allow a community to apply for funding for a program based on a health risk not listed in the statement of purpose. Other programs that stress the development and dissemination of community health education and

prevention models and guidelines are being conducted under the auspices of various offices and programs within DHHS. An important role for Federal and State Governments in support of community efforts is the provision or encouragement of resources that

enable individuals to choose healthful behaviors. Aside from the obvious

examples of health care and environmental services and rash subsidies and food are urban park facilities for exercise and recreal.ion; I7 funding

for regional health-related advocacy groups, particularly those focusing on children and pregnant women; reduction of bureaucratic confusion and

difficulty in identifying a target of influence by continued consolidation of programs and use of the "single State agency" concept; and action against civil rights violations in the planning and other local level processes ond programs within the Federal purview.

Summary

When larger social groups surrounding an individual exert a positive health influence it is much more likely that the individual or family unit will be able to aciopt healthful behaviors. Importantly, when collectivities

take action they are more likely to be successful in bringing about needed

changes in institutions and other resources that may expand individual options. Many viable local organizations and strong informal family and

community networks already exist and have significant and positive roles

in the promotion of health. Where such roles have been eroded or destroyed_ maintenance and careful nurturance should be the first

concern.

"Memorandum of Understanding between the Public Health Service and the Heritage C..yriservation

and Recreation Service of the Department of the interior. 1980.

1

175
Education program, and activities in community settings can be

supported by Supporting local action and cooperation among private industry,

schools, community organizations, and families in programs

aimed at several health-related behaviors simultaneously, especially those with meaningful activity, including jobs for young people

Emphasizing community organization in the guidelines for health

planning agency plans for health promotion programs; defining as

part of the role of health planning agencies, advocacy at regional.

State, and higher levels when the risks and behavioral influences

are wholly or partly outside the community's ability to resolve

Expanding the mandate of the Expanded Food and Nutrition

Education Program to include education for a broader range of

health objectives, and to coordinate the planning of the program

with State and local health agencies Enlarging the health education programs within the Cooperative Extension Program so as to build on their already extensive

network to rural families Channeling a part of "community" funding through national

organizations that have good local networks and ability to bring

other resources to communities

IMPROVEMENT OF THE KNOWLEDGE BASE

The knowledge base for health education has been improving and great

strides were made in the last decade. There is, however, need for much

further development if the problems of health-related behavior are to be

addressed effectively. Four complementary components are needed: a

science base, applications development, knowledge transfer, and training

in research.18 These areas are not evenly developed, and additional,

earmarked funds are needed to provide adequate knowledge.

Science Base

Over the past two decades research in educational psychology and other

related behavioral and social sciences has expanded considerably and has

provided useful frameworks for research in specific health areas. Especially needed is research designed to draw together relevant theory and

empirical findings from the behavioral sciences that can be applied

specifically to health - related behavior and then evaluated (e.g., 185. 203.

204 ). There has been relatively little research specifically addressed to healthrelated behavior. What has been done too often has lacked an adequate

conceptual base and has not been sufficiently replicated in diverse areas r-,f

liThe categories used here arc the racv., classification 'system of the National Institutes of Health.

proposed for use an all research programs or the Department of Health and Human Services (202 pp.

264 270).

176
behavior. As a result, there is little coherent literature. Exceptions include

research on the "health belief model" (205), which has included study of

the behavioral patterns of consumers in relation to a variety of preventive measures and therapeutic regimens. This has, in turn, provided the basis

for successful application. In various specific areas of researci different ccuceptual bases have been used. Research has been richest in teenage pregnancy. tobacco. alcohol, and drug abuse because of available funding

in these areas. However, even here there remains incomplete understanding of the many complex and interrelated processes that underlie the onset

of these behaviors, in part because of the prevailing emphasis on large, cross-sectional surveys and macroanalysis of variables. Much less funding

and encouragement has been given to longitudinal, multicohort studies and to small-scale intensive studies and micron lalysis of variables that emphasize subjective factors in behavior, social definitions, and social processes through time (e.g., 37, 206), These latter studies are m.st

valuable when they focus on social interaction as in Benoliel's (207) study

of families` adjustment to a child's diabetes or Davis' (208) classic study of the families of children with polio and providers of medical and

rehabilitation services.

The potential for complementary large and small-scale studies has been examined in the context of physician utilization (209) and health

education (210).

Amu The evaluation literature is growing now that a trickle of funding has been released from tie National Heart, Lung and Blood Institute and other sections of the National Institutes of Health (NIH), from the Alcohol, Drug, and Mental Health Administration (ADMHA), and from

\several private foundations. In the last decade, the applications methodol- bgies have turned the corner from case studies and time-honored

principles toward an increasingly substantial base. However. assessment of the efficacy and widespread effectiveness of healtle education programs has been hampered by funding shortages: lack of evaluation expertise

among health educators; the tendency of education programs to be diffuse and, thus, difficult to isolate for scrutiny; use of scarce resources for the

evaluation of well-defined but weak programs; and problems of measure

ment.

Funding for applied evaluative research in health education has been

very low relative to funding for the development of other health programs. Furthermore, funding has not always been available for highest priorities or for the development of a solid body of knowledge necessary for effective policymaking and program planning. The value of the Stanford

.;ornmunity project was due in part to sufficient funding that allowed time

for well-developed feasibility studies, planning, implementation, and

feedback from program experience into the program. Aside from the problem of poor evaluation designs, measurement methodologies have often beer. weak. The two major issues are what to measure and over bow long a period. Given the tenuousness of the links in

177
the knowledge-attitudes-behavior "chain," knowledge alone or even

knowledge plus attitudes, beliefs, or values is an inadequate measure of

program effectiveness when the goal is to change the incidence of a

behavior or set of behaviors. When self-reporting is reliable (or where the

margin of error has been established) or when records already exist and when a short time frame is appropriate, measuring behavior is not

difficult. Clinic visits for a screening or other preventive procedure or

entry into and continuation of prenatal care are examples of such

behaviors. In other programs behaviors should be continued or repeated

over long periods of time such as in smoking cessation, patient counseling,

adherence to a regimen for a chronic condition, nutritional practices, and

institutional procedures that are conducive to patient satisfaction. Here, at

least I-year study periods are preferable. and even then the period should

be extended. establishing the degree of stability over longer periods of

time. The difficulty arises when the relevant behaviors are not apparent for a

long time as is often the case with school health education programs. The

possible courses of action of such programs are (1) to provide for followup within large programs through the use of intermittent and separate

contracts at appropriate intervals over a 10-15-year period; and (2) the

development of better proximate units of measurement such as ratios of

intentions and attitudes in relation to real behav: (211) and testing of

relevant skills (e.g., 167). Option 1 is practical only for carefully s.- !-ected and significant

interventions. A shorter time span could suffice when there is a reason to

believe that the followup period will extend beyond a crucial stage such as

the pressure to smoke that accompanies entry into high school. Option 2 is

recommended for tracking progress of the majority of programs. Knowledge alone, however, .s not recommended as an acceptable measure and

should be combined with attitudes, intentions, and skills.

Marked biases about what constitutes "promising" interventions are

reflected in the structure, staffing, and resource allocation within Federal

health research institutions (212) and are changing slowly. However, these

changes remain fir behind the growing body of evidence that behavior is a

significant etiological force and that it can be influenced positively and

ethically_ For instance. it has been found that for the prevention of lowbirth-weight and preterm births, almost all of the attention had been given

to drug therapy and the administration of iron and vitamins, and that

almost no research ;lad been done on education for smoking cessation and

improved diet or decreased physical and psychological stress during

pregnancy, despite the much greater promise they have for positively

affecting pregnancy outcomes with fewer side effects (213).

Transfer

For those outside of health education who should know about current

and past research and evaluation such as medical care administrators,

doctors. nurses, school boards, and legislators, current information

networks and mechanisms are inadequate.

178 I
Existing mechanisms such as the National Diffusion Network of the Department of Education, which disseminates education information to State and local education agencies and school districts, could be better utilized for health education program information. In fact, with the

assistance of Federal funding. the first health education curriculum was recently validated and accepted for the Diffusion Network. Community prcgrams with school involvement could follow. A clearinghouse for health education program information is only now being established. Federal contracts should be awarded to organizations that have the capability to develop and maintain information dissemination systems over the long term. More **state-of-the-art" conferences and workshops could be sponsored, avid thzy should emphasize consensus development so

that resulting cone Lisz,Jr ..;:an be used as guidelines for programs and for

institutional policy development. To produce a "multiplier effect," greater effort could be made to reach college. university, and medical school professors through intensive training, followed by short conferences and publications. To affect curricula it is necessary to impart more extensive knowledge, and a

program modeled after the National Science Foundation summer work- shops should be instituted. Short communications such as newsletters to health care professionals and health planning agencies could be encouraged further. Special diffusion efforts should also be developed within the

Federal Government, because current research and project coordination mechanisms do not seem to be adequate in the face of personnel turnover and frequent reorganization.

Training

The continuous replenishment of trained research personnel is crucial to the development of a knowledge base about health-related behavior and educational interventions. The research capability in health education

needs strengthening. One strategy is to entice behavioral scientists to work

in this area. Traineeships and postdoctoral fellowships and project funding are obvious methods. However, it is also important to give

research and eva:uation training opportunities to people who have had

relevant experience and practice because they are, presumably, in a much better position to identify the problems in need of research and to

approach their research with an eye to its application.

Summary

Despite recent growth of the knowledge base for the reduction of behavioral risk, it remains uneven and in need of substantial investment. Specifically, it would be beneficial to Strengthen the science base for educational approaches to the

reduction of behavior risk by increasing funding for

(a) longitudinal studies of clusters of health-related behaviors

(b) small-scale. intensive studies that explore the perspectives and

1 -; 179
interactions of kr.y figures involved in the formation and

change of health-related behaviors

(c) building bodies of literature based on promising conceptual frameworks and spanning several behavioral areas Encourage research and development that reduce barriers to

healthful behaviorsrequirements of time, complexity of techni- cal knowledge, effort, and cost Establish a 10-year program of large-scale research -ind demon- straticsn with emphasis on community, school, and health care

settin gs for reaching children, adolescents, and pregnant women Fortify the applications base by increased emphasis on analytical review.; of the literature and evaluations of theoretically and

apparently excellent programs and by consensus development activities

Narrow the substantial gap between what is known about health

education and what is practiced by strengthening and extending mechanisms for the transfer of knowledge that emphasize implications for application Enlarge the number of wen-trained researchers working in the

field by increasing the number of predoctoral and postdoctoral fellowships for health education specialists and behavioral scientists and increasing the number of postdoctoral fellowships for health professionals to pursue studies and research in healthrelated behavior

ACKNOWLEDGMENTS

The author wishes to thank the many people who responded generously

to requests for information about their programs, research, and advocacy

activities. The quality of heir work and their unusual commitment to the well-being of mothers, children, and youths were always impressive. The

following colleagues gave significant comments on the manuscript: Peter Cortese, Leon Eisenberg, Lawrence Green, Phyllis Goetz, Donald Iverson, William Kane, Lloyd Kolbe, Lon Mullen, Horace Ogden, Eva Sereghy, and Denise Shipp. Finally, the enormous contributions of Lisbeth Bamburger Schorr and Select Panel members, and of Sarah Brown, John Butler, Barbara Furst, and Jessica Laufer, Select Panel staff, are gratefully

acknowledged..

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(199) Silverstein. J. B. "Strategies for Improving Your Community's Oral Health." In The Handbook of

Health 1E:inanition. pp. 77-91. P. M. Lazes. ed. Germantown. Md.: Aspen Systems. 1979. (200) Williamson. F. -Health Education and Health Promotion: Analysis of Health Systems Plans."

Focal Points. September 1980. (201) Public Health Service. Report to U.S. Congress from Secretary of Department of Health.

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Health Research Strategy. Health Research Activities of the Department of Health. Education. and

Welfare: Current Efforts and Proposed Initiatives. U.S. Department of Health. Education. and

Welfare Publ. No. (NIH) 79-2053. Washington. D.C.: U.S. Government Printing Office. 1979.

(203) Minkler. M. "The Use of Incentives in Family Planning Programs.- In..anational Journal of Health

Education 3 (Suppi. 1). 1976.

(204) Evans. R. L. R. M. Rozelle. M. B. Mittelnimit, W. B. Hansen. A. L Beane. and J. Nevis. "Deterring

the Onset of Smoking in Children: Knowledge of Immediate Physiological Effects and Coping With

Peer Pressure. Media Pressure. and Parent Modeling." Journal of Applied Social Psychology 8:

126-135. 1978.

(205) Becker. M. H.. ed. "'The Health Belief Model and Personal Health Behavior.- Health Education

Monographs 2: 324-508. 1974.

(206) (Resell. V. L. and E. W. Whittaker. The Silent Dialogue. San Francisco: Jossey-Bass. 1968. (207) Benoliel. J. Q. "'Childhood Diabetes. The Commonplace in Living Becomes Uncommon." In

Chronic Illness and the Quality of Life. pp. 89-98. A. L. Strauss and B. G. Glasser. eds. Sc. Louis: C_

V. Moab) . 1975.

(200) Davis. F. Passage Through Crisis: Polio Victims and Their Families. Indianapolis: Bobbs-Merrill.

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(209) Mechanic. D. -Correlates of Physician Utilization: Why Do Major Multivariate Studies of

Physician Utilization Find Trivial Psycliosocial and Organizational Effects?" Journal of Health and

Social Behavior 20: 387-396. 1979.

(210) Mullen.. P. and R. Reynolds. "The Potential of Grounded Theory for Health Education Research:

Linking Theory and Practice.** Health Education Monographs 6: 280-294. 1978.

(211) Fishbein. M. and 1. Ajzen- Belief: Attitude. Intention and Behavior: An Introduction to Theory and

Research. Reading. Mass.: Addison-Wesley. 1975.

(212) Brown. S. S. Policy Isszies in the Health Sciences. Institute of Medicine Publ. No. 77-002.

Washingtt. .. D.C.: Institute of Medicine. 1977. (213) Hemminki. E. and B. Starfield. -Prevention o Law Birth Weight and Pre-Term Birth." Milbank

Memorial Fund Quarterly 56! 339-361. 1978.

188
SECTION II

NEEDED SERVICES
BACKGROUND NOTES ON

VARIOUS APPROACHES

TO DETERMINING HEALTH

SERVICES NEEDED

BY INFANTS AND CHILDREN,

ADOLESCENTS AND PREGNANT

WOMEN*

by

LISSETH B. SCHORR AND ROBERT J. HAGGERTY. M.D.

We believe that the content of the papers on the health services needed by infants, children, adolescents, and pregnant women is of great significance to the total effort of the Select Panel for the Promotion of Child Health. The issues that these papers deal with will form a building block for the rest of the Panel's work, particularly because some of the

crucial aspects often tend to be neglected. These background notes argue for an approach that is broad enough to define needed services that reach beyond both current services and the

arrangements for providing them. The kind of analysis we believe would

be most useful would be grounded in what infants, children, adolescents, and pregnant women need for good health; would translate these health needs into service needs; and would point out the implications of an

intention to provide such services for health system changes. At this stagy of health policy formulation, the approach which we believe will produce the most useful answers would not be circumscribed by current poritical. organizational, or payment mechanisms. Instead, the

following wcalld occur: The basis for identifying desirable services would be an assessment of needs of the population group, rather than any given list of services currently being provided.

°This paper was smitten early is the Passer's woems in order to provide guidance and a common

framework for the preps's:doe of the fosse papers which follow.

191
The effectiveness of services and clusters of services would be

assessed in ways that would clearly relate to the context in which

services are made available, utilized, and paid for. Undoubtedly,

the way services are organized and financed, and by whom they

are delivered, are major factors in assessing their effectiveness as

well as their costs and risks.

a The classification of a service as needed or desirable would

consider equity. social usefulness, and consumer satisfaction, as

well as measures of efficacy and effectiveness. We believe that the broad approach we are advocating will proauce two

major conclusions that would not emerge from a narrower. more costeffective-centered analysis. If true. these conclusions would have major

impact on the Panel's deliberations and recommendaticns. Our hypotheses are the following: (I) A significant proportion of services are not now being provided

or utilized to the extent that they should be. (2) Major changes are needed in prevailing organizational, financing, and personnel arrangements if the full range of desirable

services are to be made available and used under acceptable

conditions of cost and risk.

OBSTACLES TO A BROAD APPROACH TO

IDENTIFYING NEEDED SERVICES

Of the many problems inherent in the way health services are organized,

financed, and delivered., and in the way health programs are legislated,

funded, and administered, cost and productivity are currently seen by

most policy analysts and decisionmakers as the most troublesome; access

is sometimes (although with decreasing frequency) also regarded as a

major problem. But the question of what services ought to be provided

because they are effective in meeting significant needs is seldom asked.

A somewhat related questionwhat benefits ought to be covered by

third-party payers?is frequently asked, but usually in a context that

avoids the more profound issue of what services really are needed. In

arriving at lists of benefits to be funded by third-party payments,

policymakers under both public and private auspices tend to base their

decisions on prevailing practice. For example, the drafters of various

national health insurance proposals, in compiling their lists of proposed

benefits, have relied heavily on benefits covered under Medicare,

Medicaid, and typical Blue Cross-Blue Shield and commercial insurance

plans- Rarely is the question of benefits related to the need for services.

A number of pressures militate against a broad, in-depth examination of

the question of what services or interventions should be provided. We take

note of these pressures in the hope that an awareness of them will increase

the chances of their being surmounted in the work of the Select Panel for

the Promotion of Child Health_

192
Reluctance To Make Policy Judgments

Policymakers tend to shy away from making judgments about what ought to be, especially if such judgments imply significant departures from

current practice. Judgments of this kind carry- major political and

bureaucratic risks; a special sanctity is apt to be assigned to whatever is current practice. As a result, policymakers seem to prefer to take a less activist posture, alcng the lines of "what is available to most people should be available to more people?' Support for the enactment of Medicare, for example, was EnclAlized around the argument that the kind of health

insurance available to working people should also be available to old

people; at the height of the Medicare debate in the early sixties there was

little discussion of what services old people actually need. This reluctance also results in making the alternative of adopting a financing mecha- nismespecially one that will cover those services already being provid- edappear to be a less intrusive (and therefore preferable) form of public policy than one which begins by a process of identifying those services

that ought to be financed because they are of demonstrable value in

relation to demonstrable needs.

Reliance on Market Mechanisms

In our health system, market mechanisms have worked to produce

excellent, although often limited, health services for some population groups. Families and individuals who have the requisite money or

insurance coverage, the necessary information to negotiate the system, and who live in places and circumstances that are attractive to physicians, can get excellent health care, especially for acute illness. The temptation, therefore, is to place an uncritical reliance on present or future market mechanisms to generate answers unlikely either to distribute resources to geographic areas that need them most (a matter not within the purview of

this paper) or to make available an array of services well matched to the

array of population needs. The assumption of those who look to market mechanisms for needed

answers is that there is a certain legitimacy to those services which individuals or their employers have purchased and to third-party

reimbursement plans. This argument further assumes that services which

are purchased or reimbursed are chosen by consumers in preference to

other services or sets of services, and that they therefore come closer to meeting real consumer needs than any set of benefits that might be chosen by a duly constituted body of experts and representatives of the public. The weakness of this argument lies in the fact that consumers of health

services, individually or in groups, rarely possess the kind of information

that equips them to make reasonable and rational decisions, largely because most consumers have had only a narrow range of choices available to them. For example, parents of children with asthma, juvenile- onset diabetes, or other chronic conditions, often assume (on the basis of

193
their experience with physicians who deal only with the narrow, medical aspects of their children's diseas) that it is unreasonable to expect their

needs for counseling, advice, and support to be met by the health system. The range of services currently available to most consumers may be

only tangentially related to consumer preferences or health needs; they

are more likely to be the products of such factors as the following: Whether they are the kinds of services which providers have been

traditionally trained to administer (resulting in an emphasis on

high-technology, in-hospital tertiary care services) Whether the services are expensive and unpredictable enough to

conform to the principle of "the insurable risk," which third-party payers have traditionally underwritten in preference to coverage of more routine services that are more likely to be under some

control of the insured

Whether the services are relatively easy for third-party payers to

define and to establish uniform standards for

Furthermore, a large proportion of advertising and other media messages, many aspects of our culture, and some parts of the medical world have

persuaded large numbers of consumers to worship medical technology, to hope far the 'magic bullet" that will cure, and to aci(Tt a general outlook

on life that is not conducive to consumers demandingor sometimes even

supportinginterventions which are aimed at anything short of rapid,

miracle cures_

Interrelationship Between Service Needs and Delivery Arrangements

Another obstacle to a broad approach to identifying needed services is

the complicated interrelationship between the question of what are desirable services and the arrangements under which services are delivered. If a need to finance and deliver a somewhat different set of

services than those currently provided exists, it is difficult to avoid a

recognition of the need for certain reforms in the way services are organized, delivered_ financed, administered, and planned for. System

changes, which are needed so that more appropriate services will be provided and utilized, may be of three kinds: (I) Those where prevailing arrangements interfere with the actual

provision of certain needed services (for example, pay' -tg doctors on a fee-for-service basis may discourage tie provision of services which are not defined as "procedures" such as parent counseling aimed at enabling a family to cope more effectively with a chronically ill childas opposed to current reimburse- ment., which results in high fees for technology such as

tyrnpanometry or fiber optic gastroscopy). (2) Those where prevailing an angements interfere with economical or effective provision of a given service (for example, parent counseling aimed at improved family nutrition may be more

cost-effective when done by a community health worker than by

a physician).

194
(3) Those where prevailing arrangements or traditions tend to

inhibit outreach to individuals and families who are reluctant to

use needed services, or have difficulty in making good use of the

services they need. (The tradition against "ambulance chasing" and the tendency to rely on the resources of individual practitioners working alone may get in the way of the effective and prompt identification of and intervention with high-risk

neonates and handicapped children who can be helped today in ways quite undreamt of only a decade or two ago.)

Comillications in Applying Measures of Efficacy, Cost Effectiveness, and Cost Benefits

A last hurdle that seems to inhibit a broad analysis of what services ought to be provided is a product of the way in which the concepts of efficacy, cost effectiveness, and cost-benefit cr risk-benefit ratios are used.

In the current cost-cutting climate, it is tempting to focus on costs more

than on efficacy, effectiveness,' and benefits. The spotlight tends to fall on

the excesses of the current system, the services that tradition has sanctified despite little evidence of efficacy or effectiveness, but which can now be

shownon the basis of hard datato carry high risks or costs and few, if any, benefits. Most examples of successful cost-cutting by reducing "unnecessary

services," have not, significantly, come out of the child health area. (The exception is tonsillectomies and adenoidectomies, which had been the major source of unnecessary surgery among children.) However, the

relative invulnerability of children to the overuse of technology may be a phenomenon of the past As new technological developments have made

possible both miniaturization and a !esser degree of invasiveness especially through the use of fiber optics, CT scans, and ultrasoundthe

appropriate use of technology in pediatrics is rapidly becominga matter of

increasing concern. Any identification of needed services must include consideration of mechanisms to ensure that such lists, and policy decisions about the

financing and delivery of care that are based thereon, be continually

reviewed and revised on the basis of current information regarding

efficacy and effectiveness. Efficacy has not been sufficiently utilized in the past as a criterion for providing or paying for services. More widespread use of efficacy criteria woul I be highly beneficial in health as well as economic terms.

Efficacy consideration must, of course, be employed both in the

elimination of unnecessary (i.e., ineffective) services, and in judgments of what services should be more widely provided. To indicate the broad

We refer to efficacy in discussing the effect of a particular intervention on an individual with a

particular condition. and effectiveness to encompass the ad. variable when the intervention is

actually applied in routine clinical practice to a population.

195

2 I
spectrum of efficacy-related questions, let us simply suggest these

examples: By what mechanism (administrative? professional?) should the

desirability of universal screening of normal infants for such

conditions as PKU or thyroxin T4 be determined? By what process should the desirability of making available or providing fetal monitoring io all women in childbirth, to high-risk

women, or to women electing it, be determined? By what process, using the results of research and feedback from

clinical trials, can the most recent advances in diagnosis and

treatment be made most widely available in clinical practice? How

can the necessary information be systematically made available to providers, consumers, and third-party payers so that all will be

encouraged to utilize more efficacious, more economical, and less

risky procedures? By what processes can such services as counseling and other

nontechnical interventions be reasonably evaivated, recognizing

that the interventions themselves, as well as their effects, are

exceedingly difficult to measure with presently available tools and

concepts? The application of cost-benefit and effectiveness measures is particularly complicated regarding this last category of services_ It may be fairly

simple to calculate the cost of a half hour of "anticipatory guidance" to

the mother of a young infant, provided by a physician or a nurse

practitioner in the office, or by a public health nurse or lay health visitor

at home, but the obstacles to evaluating the efficacy, let alone the cost

benefit or cost effectiveness of the intervention, are formidable. Problems

in the measurement of long-term outcomes present major theoretical and

methodological problems, and even where convincing evaluation research

can be contemplated, the high cost of carrying it out and the social control

necessary to enable valid experimental inferences can raise additional

questions of cost benefits and of the ethics of the research.

Many of the services that are responses to "the new morbidity,"

whether they are meant to deal with learning disorders, allergies, teenage

pregnancy, child abuse, or the antecedents of adult illness, have not been

well defined or standardized_ No consensus exists about which categories

of health workers provide any of the services most economically and

effectively, or even whether some should be provided through the health

system at all. Many of the most significant justifications for these

interventions involve effects that may occur over long periods of time, and which we know very little about how to measure. (What kind of

interventions are effective in avoiding obesity in children? Will effective

interventions result in a decreased incidence of adult disease, in an

improved self-image? To take another example, are there effective

interventions that will lead to a decreased incidence of child abuse? Will

they pay off in the prevention ofviolence a generation later?) The critical policy issue that is raised by this category of services is

simply this: Is there a way of looking at those services for which hard data

on effectiveness are still incomplete, other than by dismissing them as

"frills?" We must deal with these services in ways that will prevent their

/96
exclusion fro= what may be classified as a "decent minimum" of services, because of the major impact such a classification would ha---e on such matters as third-party payment policies; categorical grant payments policies; research funds; and policies regarding selection, training, and utilization of personneL2 At the same time we must guard against encouraging the provision of a wide variety of ineffective services by

poorly trained people, which could result if payment were made available

for an expanded array of services, under circumstances which are not wisely thought out and defined.

2A. L Cochrane has writtenwisely. in our viewthat -cure is rare while the need for care is

widespread. and . . . the pursuit of cure at all costs may restrict the supply of care.-

197
A CHILD'S BEGINNING

by

SAMUEL. S. KESSEL. M.D.

Ju Dm' P. Rooics. C.N.M., M.S., M.P.H.

IRVIN M. CUSHNER. M.D., M.P.H.

INTRODUCTION

A child's health, and the health of the adult the child subsequently

becomes, are profoundly affected by the child's conception, gestation, and birth, and by the nurturing the child receives early in life. Being wanted, born well, and welcomed into a healthy family are essential for a child to begin life without compromise. This paper identifies and discusses

important health services that support healthy reproduction and family

formation.

The first section of this paper establishes a conceptual framework_ This

is followed by a description of some of the characteristics of American women that are likely to influence childbearing and child rearing. This

section also describes the current status and trends of reproductive health

in the United States. The third section enumerates and describes the

health services needed to ensure healthy reproduction, a healthy baby, and healthy child rearing. Implications and controversies involving several of these health services are highlighted in the fmal section of this paper.

THE IMPORTANCE OF PARENTAL HEALTH

The physical and emotional health of parents, and the knowledge, attitudes, and skills they bring to parenthood significantly influence the

care and nuturing provided to the newborn infant and growing child. The

inextricable relationship between women's health, the quality of reproduction, and the health of children underlies the longstanding public health

practice of considering "maternal and child health" together.. Women play

a central role in determining whether or not unwanted children are

conceived and born. A woman's physical health--and behavior during

pregnancy and parturition have a unique and profound influence upon the development of the fetus and health of the newborn. Breastfeeding mothers provide the sole source of nutrition to their young infants_ As the usual primary caretakers, mothers play important roles in establishing the

family's emotional climate, making decisions about and obtaining health

199
care for their children, and influencing their children's daily living.

dietary, and personal health habits. Although mothers conceive, gestate, and bear children. there is little

doubt of the importance of fatherhood, parenting, and the family in

relationship to reproduction, child rearing, and child well-being. Substitution of "parental and child health" or family health" for the traditional "maternal and child health" idiom more clearly acknowledges the

importance of fathers and the family to the health of mothers and

children. Nonetheless, the principal focus of this paper is on women of

childbearing age. pregnant women, and their infants_ Whenever appropriate, this paper will expand beyond this focus and consider family health

concerns_

TARGET POPULATION CHARACTERISTICS AND HEALTH STATUS

Women of Reproductive Age

Changes in the roles and behavior of reproductive age wcynen have a

great influence on childbearing and child rearing. This section describes

c---me of the social, economic, fertility, and health characteristics of American women that directly and indirectly influence our children's

health_

Marital Status

Most American women marry; more than half marry before the age of

22 and by age 35, only 12 percent have never been married (I). A trend

toward earlier marriage, which began in the early 1940's, is now being

reversed_ The median age of women who married for the first time in 1978

was 21_8 years (2). Most women marry men of the same race, religion, and social class, and

of the same or slightly older age (1). Women with very high or very low

levels of education, that is, women who did not complete at least 5 years

of elementary school (including many who are mentally retarded) and

women with at least 1 year of post-baccalaureate education are least likely

to marry (4). The incidence of divorce is increasing for all age groups and races in the

United States: The divorce rate for people less than 30 years old tripled between

1960 and 1970 (2); for women, the peak age for divorce is between

20 and 24 (4). Approximately one-third of all Americans now in their early 30's

have been divorced or will divorce at some time in their lives (3).

Divorce rates are higher for blacks, couples with no children,

couples with low educational attainment, and couples with low

incomes (2. 3). Couples of which both partners are college gradnates are only half

as likely to divorce as couples of which neither graduated from

200
high school (3); this may well be as related to low income and the

stress associated with little income, as it is to education itself. The younger a woman is when she divorces, the greater the

likelihood that she will remarry; remarriage is much more likely

for a woman who divorces before age 30 and is more likely for women with no or few children (3). Second marriages are more than twice as likely to end in divorce

as first marriages (4). Almost one in four American women younger than 25 years of age who married for the rust time between 1972 and 1976 began marriage pregnant or with an existing child (5). Almost 10 percent were already mothers before they married; 14.4 percent were at least 6 weeks pregnant on the

day of their wedding.. The younger a woman is at the time of her first marriage, the more likely it is that she is already pregnant. Almost onethird of brides 14-17 years old are pregnant, compared to only 6 or 7

percent of women who first marry at age 20-24 (5) the proportion of brides who were already pregnant increased between 1952 and 1971, after which it stabilized and even decreased for the 18- to 21-year-old group (5). Premarital conception is much more prevalent among black than white women; in 1977 the incidence of premarital conception among black women marrying for the first time was 38 percent compared to 7 percent among white brides (5). Marriage subsequent to a premarital conception predisposes couples to considerable economic disadvantage throughout much of their lives. These couples are also more likely than other couples

to divorce (6).

Fertility

The annual number of births per 1,000 American women of childbearing age decreased sustantially between 1957 and 1976 (7). While the

fertility rates for adolescents and women oveT. age 39 continued to decrease in 1976-77, the decline in the overall U.S. fertility rate has

leveled off since 1976 because of the higher fertility rates for women

between 18 and 39 years of age (8, 9). A recent increase in first births to

women between the ages of 25 and 34 may be accounted for in part by the

trend away from early marriage (8, 9). The long-term trend toward lower

fertility results from both the desire of an increasing number of Americans

to have fewer children, and their increasing ability to prevent unwanted

pregnancies and births_ In 1967 the average American woman wanted to

have three children; by 1976 most American women wanted and expected

to have only two children (9). The risk of a poor pregnancy outcome increases with increasing parity

(10-13). Reduced parity has been postulated to be the single most

important factor contributing to the continued downward trend in infant mortality in the United States (13, 14). Despite these trends, the Bureau of the Census has projected that, barring drastic economic changes, the number of babies born each year will increase over the next decade because of the increased number of

young women entering the chilebearing years. In 1977 3.3 million babies were born; 4 million births are =.wredicted for 1990 (15).

201

2 1
White women in this country have always experienced lower fertility

than black women. While fertility rates for both white and black

American women have declined since 1957, the decline has been steeper

among white women (7). Studies show that this persistent racial differential is not due to a desire for larger families on the part of black

women. Rather, a greater proportion of births to black women are

unintended, and among black women there is a tendency toward starting

sexual activity, and thus childbearing at an earlier age (16). Complete childlessness, however, is also more prevalent among black than among

white women (9). Childbearing by single women is increasing in the United States. Between 1976 and 1977 infants born to unmarried women increased by 10 percent. This increase results. in part. from a 5 percent increase in the rate

of childbearing by unmarried women of fertile age, and from the

increasing age at marriage, which inflates the number of single women in

the population. Out-of-wedlock fertility is increasing among all age groups except for women younger than 15 or older than 39. Although more than half of the out-of-wedlock births occur to teenagers (9) with largest

increase in such births between 1976 and 1977 was among women age 20-24 (8). The fertility rate for single black women age18-44 is nine times

higher than that for single white women of the same ages ( / 7).

Timing of Pregnancy and Child Spacing

The age at which a woman becomes pregnant may adversely affect her

offspring. Pregnancies at either extreme of the childbearing age range are associated with poorer outcomes (11. 13. 14). In 1977 only 18 percent of

all U.S. births, and only 7 percent of first births were to women age 30 or

older; 4 percent of all births were to women over the age of 34, and 17

percent of births were to teenagers (8). The interval between pregnancies may influence both the outcome of a

pregnancy and ability of the parents to meet their infant's needs. Too

short an interval may not allow sufficient time for the mother's body to

recover from the nutritional and other biological stresses of pregnancy

(18). In addition, subsequent births may occur at a time when the young

family has not yet fully adapted to the changes and demands of the

previous child. An interpregnancy interval shorter than 24 months and

longer than 48 months is associated with a higher incidence of low birth

weight (78). While the mean interval between births is increasing slightly

for both black and white American women and is currently longer than at

any time since World War II (9), 25 percent of second births occur less

than 2 years after the birth of the first child (8).

Adolescent Sexuality and Childbearing

Attainment of female puberty has been occurring earlier with each

generation. However, despite the earlier onset of biological readiness to

conceive, today's teenage girls are less likely than teenagers of only a few

years ago to either marry or to have a child while they are still in their

teens (9). The fertility of 16- to 19-year-olds decreased between 1957 and

202
1976, although to a somewhat less marked degree than among older women. Birth rates for girls younger than 16 rose steadily from the early

1930's until they peaked in 1973. Fertility among teenagers of all ages has

been decreasing since 1974 (19), with the rate of decline being greater

among black than among white teenagers.

Comparison of findings from national surveys of 15- to 19-year-old

never-married women conducted in 1971 and 1976 document increasing

sexual activity by teenaged girls. As compared to the 1971 study, the 1976

study found a 30 percent increase in the percent who had ever had sexual

intercourse, with increases for both black and white teenagers of every age

(16)- Among those who had ever had sexual relations, the survey found no

increase in the frequency of sexual relations, but an increase in the

number of sexual partners and a somewhat earlier median age at first

intercourse (four months earlier than in 1971). There were substantial

increases in the percentages of both black and white teenagers who always

used contraception (30 percent in 1976, compared to 18 percent in 1971)

and, paradoxically, moderate increases in the proportion who never used

contraception (26 percent in 1976, compared to 17 percent in 1971).

Among those surveyed who ever used contraception, there was a marked

shift from use of the least effective methods to use of the most effective

methods. Analysis of data from the 1976 study indicates that half of all

teenage conceptions occur in the first 6 months of the girl's sexual

experience (2(0.

Adolescent pregnancies, -children having children," are associated with

increased jeopardy to both the mother and the newborn. Maternal

morbidity and mortality is higher among adolescents, and their newborns

are at a higher risk of being born prematurely or with a low birth weight.

Low-birth-weight infants have reduced survival chances and greater risks of serious neurological impairment (21). Adolescent motherhood is

associated with lowered educational and occupational attainment, reduced income, and increased likelihood of welfare dependency. A

Chicago-based study found that children of mothers who began childbearing at age 17 or younger are less likely than children of older mothers to

adapt well to school (22):-Analysis of several large U.S. data sets shows a

small but consistent effect of maternal age on children's IQ's., with

children of older mothers doing better (22). All teenagers are not the

same. The -problem- of teenage pregnancy is important to disaggregate

the individual age groups. Women 18 and 19 years old have pregnancy

outcomes similar to women in their early twenties. Younger teenagers and

their infants are at greater risk for untoward outcomes. Interruption of. or

failure to complete, high school, a distinct disadvantage with profound

future consequences. is obviously limited to adolescents who become

pregnant while still in school. Inadequate preparation for the responsibility of parenthood is. however, prevalent among adolescents of all ages.

Family Planning and Unintended Births

The vast majority of married couples in America use effective

contraceptive methods. As of 1976, all but 7.7 percent of married couples

were either using a contraceptive method or did not need contraception

21 203
because one or both spouses were sterile or because the wife was pregnant, postpartum, or trying to conceive. Although the pill is still the most

common method of temporary contraception, it is losing popularity. Voluntary sterilization is becoming increasingly popular f 23). Among

couples who rely -In surgical sterilization as their method of contraception, an equal proportion of men and women have been sterilized; male

sterilization, however, is becoming the preferred choice. Contraceptive utilization is related to income and race. Low-income

and black married women are less likely than higher income and white married women to use any method of contraception. Among black

couples, especially those with low incomes, there was a substantial

increase in reliance on nonmedical and folk methods between 1973 and

1976 (23). During that same period there was a dramatic increase in the prevalence of surgical sterilization among white couples, but not among

blacks (23). Among white couples, husbands are more likely than wives to be sterilized; among black couples the wives are more likely to be

sterilized (24). A significant part of the racial difference in the proportion of married couples using no method of contraception and risking

unplanned pregnancies is due to fewer voluntary surgical sterilization

among black husbands. The proportions of couples using each of the other methods are approximately the same regardless of race (23). Preliminary analysis of data from the 1976 National Study of Family Growth indicates that about 10 percent of births during the prior 3 years occurring to married women and single mothers living with their children

resulted from pregnancies that were unwanted by these women at the time of conception (25). An additional 25 percent were babies the mothers wanted to have at some time, but which came too early in the mothers

lives (25). Unintended births are disproportionately concentrated among

the poor, blacks and other racial minorities, and adolescents. The problem

is especially severe among women who have all of these characteristics.

Abortion

The increasing incidence of legal abortion attests to the large number of

unwanted and ill-timed pregnancies. Following the 1973 Supreme Court decisions on abortion, the incidence of legal abortion in the United States

rose dramatically. An estimated 13 million abortions, or 1 abortion for

every 3 live births now occur annually. Three-quarters of the women who have abortions are -not married at the time of the abortion, although in

1977 more than half (52 percent) had children. Approximately one-third

of all abortions are obtained by teenagers (26). Although women at the extremes of the reproductive age span have the

lowest pregnancy rates, they are more likely than other women to have

their pregnancies terminated by abortion (26). For every 10 girls younger than age 15 who have a baby, there are 12 who have legal abortions. Women 40 years of age or older have seven abortions for every 10

live births, whereas women between ages of 25 and 29 have only

two abortions for every 10 live births.

204

2 4:-dL
The incidence of abortion also varies according to race. Approximately

one of every three pregnant black women and one of every five pregnant

white women have their pregnancies aborted (26).

Part of the observed redaction in maternal and infant mortality is

probably related to the increased availability of legal abortion (27), since a

higher proportion of unwanted pregnancies occurs among women who are

at increased risk for poor pregnancy outcomes(28-30).

Poverty and Women as Heads of Honsehoids

In 1970, 85 percent of children under the age of 18 lived with two

parents. By 1978, only 78 percent were living with two parents, and only

67 percent lived with both their biological parents (2). If current trends

continue, almost half of all children born in the United States this year will most likely spend a significant portion of their childhood living with

only one parent In about 92 percent of these cases, that parent is the mother, a percentage that does not appear to be decreasing (2).

In 1975-76, almost 10 percent of white children, 17 percent of Spanish

surname children, and 35 percent of black children were living in

households headed iiiiiver-married or divorced women (4, 31). Such

households are increasing. The number of American families maintained

by divorced or never-married women doubled during the 1970's (17). Families headed by women without husbands are, in general, poorer

than other families. Many women who head households are less hlely to work because of their responsibilities for child care. Most such women are

separated or divorced (17). Only about 44 percent of divorced fathers are ordered to pay child support, and less than half of them do so regularly

(32). Almost half of all poor families in this country are headed by women

without husbands (17). In 1977, there were about 1 million poor, unemployed female heads of households with children under 18 years of age; children less than 6 years of age lived in approximately 660,000 of

these women-headed households(17).

Current welfare laws may contribute to the problems of poverty and

lack of access to vital health services. Poor intact families, those with both

a mother and a father in the home, are not eligible for Aid to Families

with Dependent Children (AFDC) and are therefore ineligible for

Medicaid in most States. Insufficient childcare services prevent many women from working (33).

Edneadooal Attainment

The educational status of American women is improving. Approximately three-quarters of the women who had their first child in 1977 were high

school graduates; 80 percent of the men who became fathers for the first

time in 1977 were high school graduates (8). The number of female college

graduates in the population increased by 57 percent between 1970 and

1978, bringing the total percentage of women over the age of 25 who had graduated from college to 12 percent in 1978 (17). Since higher

205
educational attainment by the mother is associated with an improved

pregnancy outcome, these statistics are encouraging (10).

Working Women

Until recently, labor force activity was concentrated in one stage of

most women's life cycles; marriage and reproduction were concentrated in

another_ Only a few women were simultaneously workers, wives, and

mothers. In recent years, there has been a dramatic surge of women

entering the labor force_ Nearly half of the women of working age are

either employed outside of their homes or are actively looking for jobs

(17). Over 60 percent of women between the ages of 25 and 34 are in the

work force; 60 percent of wives work (17). Labor force participation by mothers is increasing. In 1978, 42 percent of mothers with preschool children under 6 years of age and 57 percent of mothers of school-age

children 6-17 years old were working or looking for work (17). Many of

these women earn poor incomes, especially as compared to men; for yearround full-time workers in 1977, the median income for women was

$8,810, compared to $15,070 for men (17). While the term "working women" usually refers to women who work

away from the home, the job of working in the home should also be

considered. Housework can be strenuous and time consuming with great

demands and responsibilities. Women almost always retain responsibility

for the overall management of the household (34). In addition, women who also work outside of the home continue to bear the major

responsibility for their traditional family duties, even when preschool

children are present (35, 36). In 1977, an estimated 1 million infants were born to women who were

employed during pregnancy (37). Studies conducted in England at the end

of World War II showed that pregnant women who worked outside of the

home and who continued working past the 28th week of pregnancy had

poorer pregnancy outcomes than housewives; among working women the

incidence of low-birth-weight (LBW) infants was 11.1 percent and the perinatal mortality was 4.9 percent, as compared to 4.7 percent LBW

infants and 2.8 percent perinatal mortality for the housewives (38). The

risks associated with pregnant women working, especially late in pregnancy, continue to require careful consideration and examination of working

conditions for women today. Greater participation in the Nation's work force increases women's

exposure to workplace hazards (39). Although many hazards affect men

and women more or less equally, during pregnancy the developing fetus

may be particularly susceptible to environmental insult (40, 41). Exposure

of either men or women to certain environmental hazards can lead to

sterility or genetic abnormalities that are generally not detectable prenatally. Occupational and other environmental hazards have been

linked with spontaneous abortion, stillbirth, congenital malformation, and

the occurrence of certain kinds of cancers during the early years of

childhood. For some environmental agentslead, mercury, or ionizing

radiationsuch relationships are relatively well established;(42) for

others, they are strongly suggested (43), as in recent epidemiologic studies

206 2
of men and women frequently exposed to anesthetic gases in operating

rooms (44). Few data are available that would-permit a comprehensive evaluation of the extent to which employed pregnant women may be

exposed to health risks associated with specific work environments (39, 45, 46).

Cigarette Smoking

Smoking by the mother retards the rate of fetal growth and increases the

risk of spontaneous abortion, fetal death, and neonatal death in otherwise normal infants (47-49). The risk of having a low-birth-weight baby is doubled if the pregnant woman smokes (50). Children born to women who smoke during pregnancy apparently do not catch up in later life with the growth rate and achievement levels of children of nonsmoking mothers (48). The proportion of adult women who smoke increased from

25 percent in 1955 to 32 percent in 1965, after which it declined to about 28 percent in 1978. However, the proportion of teenage girls who smoke has greatly increased and teenage girls may now be more likely than

teenage boys to smoke (48). Although the proportion of adult women who smoke has decreased slightly, there has been an increase in the average number of cigarettes smoked per day by women who do smoke, with

approximately 23 percent of female smokers usually smoking more than a pack of cigarettes each day (48).

Mental Health

More women than men at every age over 15 receive treatment for mental health problems. Depression is the most prevalent problem. While the same factors are associated with high rates of depression in both women and menpoverty, stressful life events, and inadequate social supportsamong men and women who experience sin:ular adverse

circumstances, women are more likely to become depressed (51). Studies indicate that working outside the home appears to offer women some protection against depression (52). Although marriage is associated with

lower rates of depression among men, depression is more common among married than single women (53). Among married women, those living with young children are more likely to be depressed than women without children. These are not minor or inconsequential depressions. They often form a long-term pattern of severe emotional symptoms that are

frequently associated with physical distress (52). Suicide is a leading cause of death for young women (54). The peak ages for depression among women, 25 to 44 years, are the ages most likely to coincide with childrearing responsibilities (51). More than

4,000 women a year are hospitalized for postpartum psychiatric care (34). Depressed mothers are more likely to be dominating, hostile or aggressive

in dealing with their children. The children of depressed women tend to

report unhappiness in their relationships with their mothers, are less likely than other children to turn to their mothers for support, and have

themselves an increased risk of emotional disorders (55, 56).

207
Health Services Utilization

Women between the ages of 17 and 64 make more visits to doctors than

men of a comparable age. Younger and older women utilize physician

services at about the same rate as men (57). Although women are more

likely than men to have a regular source of health care (85 percent of

women compared to 76 percent of men), they are also more likely than

men to perceive that they have unmet health needs. Among people

without a regular source of health care, women are more likely than men

to indicate that they are unable to find the right doctor (58). Before

menopause. women receive health care primarily from obstetrician-gynecologists. After age 45 they are cared for primarily by internists and family

physicians (59).

Pregnant Women

Maternal Mortality

Fear of dying is no longer a primary concern of pregnant women, as it

was at the beginning of this century. Reduction in high-parity births,

advances in medical science, and improved nutrition and gtmeral health

have dramatically reduced maternal mortality to a rare occurrence. In

1915. there were 600 maternal deaths per 100,000 live births in the United

States attributed to complications of pregnancy, childbirth, and the

puerperium, compared to the 1978 provisional maternal mortality rate of

almost 10 deaths per 100,000 live births (60). However, racial disparity in

U.S. maternal mortality continues. The maternal mortality rate for

nonwhite American women is three times higher than the rate for white

women (60). In addition, changing delivery practices could increase

maternal mortality in the future (6 ).

Prenatal Care

Although there has been an increase in the proportion of pregnant

women who receive prenatal care and a shift toward earlier prenatal care,

many still do not receive adequate care during pregnancy (54). Women in

subgroups of the population, however; are mur":7 less likely to receive early

or any prenatal care. Those women whose babies are at the greatest risk

very young or elder women, black women, and poorly educated women

are less likely io receive early and frequent care during pregnancy than are

those groups of women for whom the risk is less.

68 percent of the women who gave birth in 1970 made their first

prenatal care visit during the first trimester of their pregnancy; by

1977. this proportion had increased to 74 percent (54).

77 percent of the white mothers who delivered babies in the

United States in 1977 began prenatal care in the first trimester of

pregnancy. compared to only 59 percent of the black mothers

(54).

208 2
Black mothers were more than twice as likely as white mothers to

receive no prenatal care (54). Women between 25 and 34 years of age are most likely to get early

care (81 percent began prenatal care in the first trimester in 1975), and are least likely to get no prenatal care (0.8 percent in 1975)

(62). Girls 15 to 19 years of age are least likely to receive early prenatal care (only 53 percent began prenatal care in the first trimester in 1975), and are most likely to have no prenatal care at all (2.3

percent in 1975) (62).

Pregnancy Outcomes

Infant Morbidity and Mortality

The chances of being born alive and surviving the first year of life have

steadily improved in the United States. The 1979 U.S. infant mortality

rate (IMR) of 13.0 infant deaths per 1,000 live births was 4.4 percent lower

than the previous year. However, despite continued and steady prowess, the fate of an infant born in this country today is by no means assured. In

the United States in 1979:

44,200 infants died before reaching 1 year of age. 241,000 infants were born weighing less than 5.5 pounds. 250,000 infants were born with moderate to severe congenital defects.

Fifteen other countries have lower rates of infant mortality than the United States.

Moreover, within this country population subgroups continue to have high infant mortality rates. Disparity exists according to race and ethnic origin. A black child born in this country has almost double the risk of dying before ever celebrating a first birthday, when compared to the

survival chances of a white infant born during the same year. The 1977

infant mortality rate for white infants was 12.3 infant deaths per 1,000 live births, while the black infant mortality rate was 23.6 infant deaths per 1,000 live births, an infant mortality rate that was recorded for white

infants more than 25 years earlier. National data on Hispanic infant mortality is not readily obtainable bemuse Hispanic vital statistics are not disaggregated from the "white" category. Consequently, specific national information is currently unavailable for the largest ethnic minority in the United States. (The National Center for Health Statistics has indicated

that they will be reporting Hispanic data as a separate category beginning with 1980 vital statistics.) Geographic pockets of high infant mortality generally correspond to

areas with concentrations of impoverished people. In 1975-77, Mississippi recorded the highest state resident infant mortality rate, 20.6 infant deaths per 1,000 live births, and Maine recorded the lowest, 11.2 infant deaths per 1,000 live births. The District of Columbia's 1977 infant mortality rate of 27.4 was the highest recorded that year for any American city or State.

209 22Li
Table 1 documents a 31 percent decline in mortality for white infants between 1970 and 1977. and a 28 percent decline for blacks. The

"black-white ratio," a statistic that compares the variance between the white and black infant mortality rates, shows that the gap between white and black infant mortality has been widening since 1973. The neonatal (table 2) and postneonatal (table 3) mortality rates reveal more precisely where the disparity exists. Neonatal mortality rates for white infants declined by 37 percent between 1970 and 1977; for blacks the decline was only 29 percent. Changes in the black-white ratio indicate a steady

increase in the disparity between white and black neonatal mortality. Postneonatal mortality rates for white infants declined only 10

percent between 1970 and 1977, compared to a 23 percent decline

for blacks. Changes in the black-white ratio show that the gap

between white and black postneonatal mortality is narrowing. There is greater white-black disparity for postneonatal than for neonatal mortality. To the extent that neonatal mortality reflects prenatal and perinatal circumstances and events, and postneonatal mortality reflects parenting

and other aspects of the infant's environment, different intervention

strategies are required to reduce these two components of infant mortality

(63). Prenatal care with risk assessment and management (described in

detail in a later section) and newborn intensive care are both directed at reducing hazardous conditions that threaten the infant primarily during

the neonatal period. Instruction to new parents, especially new mothers, in

the routine care and feeding of their infants and in identifying infant

illness symptoms is an example of a prevention-intervention strategy to

reduce postneonatal infant illness and death.

210

TABLE 1. infant Mortality Rates According to Race in the United States: 1970 to 1979 (Infant deaths under 1 year of age per 1,000 live births)

Year

AU

Rases White

All

Other Black

Black/

White

Ratio

1970 20.0 17.8 30.9 32.6 1.83

1971 19.1 17.1 28.5 30.3 1.77

1972 18.5 16.4 27.7 29.6 1.80

1973 17.7 15.8 26.2 28.1 1.78

1974 16.7 14.8 24.9 26.8 1.81

1975 16.1 14.2 24.2 26.2 1.85

1976 15.2 13.3 23.5 25.5 1.91

1977 14.1 12.3 21.7 23.6 1.92

1978(est) 13.6 - - -

1979(est.) 13.0 - - -

SOURCE: National Center for Health Statistics.

2. b
TABLE 2. Pieonehal Norte Illy Raise According to Rowe In

the Unlead abies: 11170 is 1978

on lent deaths under 2 days of age per 1,000

live births)

Year

AN

Races While

AN

Other Bieck

Black/

White

Ratio

1970 15.1 13.8 21.4 22.8 1.65

1971 14.2 13.0 19.6 21.0 1.62

1972 13.6 12.4 19.2 20.7 1.67

1973 13.0 11.8 17.9 19.3 1.64.

1974 12.3 11.1 17.2 18.7 1.69

1975 11.6 10.4 16.8 18.3 1.76

1976 10.9 9.7 16.3 17.9 1.84

1977 9.9 8.7 14.7 16.1 1.85

1978(est.) 9.4

- - -

SOURCE: National Center for Health Statistics.

TABLE 3. Posinsonstal Iliontsdity Raise According is Race

In the Mined 1970 is 1978

clealisc 28 days to 395 days of age per 1,000 Use births)

Yew

AN

Races White

AN

Other Bieck

Black/ WM*

Ratio

1970 4.9 4.0 9.5 9.9 2.45

1971 4.9 4.1 7.9 9.3 2.27

1972 4.9 4.0 8.5 8.9 2.23

1973 4.7 4.0 8.3 8.8 2.20

1974 4.4 3.7 7.7 8.1 2.19

1975 4.5 3.8 7.4 7.9 2.08

1976 4.3 3.6 7.2 7.6 2.11

1977 4.2 3.6 7.0 7.6 2.11

1978(est.) 4.2

- - _. SOURCE National Center for Health Statcs.

Low Birth Weight

Survival is not the sole criterion for assessing pregnancy outcomes. Many conditions carry potentially hazardous consequences even in the

absence of a fatal outcome (64, 65). Low birth weight (LBW), a birth weight of less than 5112 pounds (2,500 grams), is the most significant newborn characteristic associated with a poor prognosis; that is, increased

perinatal and infant mortality and morbidity, including adverse sequelae

such as mental retardation and learning disabilities (65). Low-birth-weight infants face a fortyfold greater chance of dying before 1 month of ageand

are 20 times more likely than heavier newborns to die before their first

birthday.

211

20.00
Infants born in the United States in 1978 had a median birth weight of

3,350 grams (approximately 7 pounds 6 ounces). The median weights for white and black babies were 3,390 and 3.150 grams respectively, a

difference of about 8 ounces. Approximately 235,000 low-birth-weight

infants were born in the United States in 1978, representing 7.1 percent of

all live births.

LBW babies are of two types: (1) Infants born prematurely (before 38 weeks of gestation). who

weigh less than 5 1/2 pounds

(2) Full-term infants who weigh less than 51/2 pounds at birth.

referred to as small-for-gestational-age (SGA) Prematurity results from the untimely onset of labor which results in an

abbreviated gestational period precluding complete maturation. SGA

babies are dysmature; they are less mature than would be expected

considering full-term gestation. These babies lack the nutritional stores

and reserve capacity of infants of normal weight. Placental insufficiency, inadequate blood flow through the placenta resulting in inadequate

transport of nutrients from mother to fetus, is primarily responsible for the

intrauterine fetal deprivation that results in an SGA newborn. Although

these two types of LBW require different approaches for successful

intervention, low birth weight of either type is an important indicator and predictor of immediate postnatal problems and compromised future

health. Women with certain characteristicsprevious miscarriages or stillbirths, short intervals between pregnancies, late or no prenatal care, and

women who are black, unmarried, not high school graduates, or under 18

years of age or over 35 years of ageare more likely than other mothers to

have low-birth-weight babies (65, 67). In 1977, women between the ages of

25 and 29 had the lowest proportion of LBW babies, 5.8 percent, whereas

more than 9 percent of babies born to women under the age of 20 or over

the age of 39 weighed 2,500 grams or less. In 1978, the incidence of low

birth weight was twice as high for black babies as it was for white babies,

even when the differences in the mother's ages are considered. The incidence of LBW declined 10 percent between 1970 and 1978

(table 4). During the same period the infant mortality rate declined much more sharplyby 32 percent. The disproportionate decline in infant mortality may be explained in two ways. First, because an estimated 65

percent of infants who die in the United States each year are LBW, a

small change in the incidence of LBW results in a large improvement in

infant survival. Second, significant advances in perinatal and neonatal medicine have made it possible to save the lives of many low-birth-weight

infants (64, 68, 69). These improvements are reflected in significant reductions in birth

weight-specific mortality rates observed at a number of neonatal intensive

care centers.

Sweden has the world's lowest infant mortality rate. While the United

States ranks far below Sweden, the 1973 birth-weight-specific infant

mortality rates in six selected States in the United States were lower than

in several other industrialized nations including Sweden (70). Low-birthweight infants born in the United States have much greater survival

212
chances principally because neonatal irtensive care in the United States is unsurpassed (64. 68, 71. 72). Our infant mortality rate is higher than that

in 15 other countries because a higher proportion of U.S infants are LBW, and not all of them have access to neonatal intensive care.

TABLE 4. incidence of Low-Birth-W oigh2 (LBW) Infants According to Roos In the Unliod MMus: 1970 in 197$ (percent of births)

Yew

All

Rams WM.

AB

Other Black

Block/

Whits

Ratio

1970 7.9 6.8 13.3 13.9 2.04

1971 7.7 6.6 12.7 13.4 2.03

1972 7.7 6.5 12.9 13.6 2.09

1973 7.6 6.4 12.5 13.3 2.08

1974 7.4 6.3 12.4 13.1 2.08

1975 7.4 6.3 12.2 13.1 2.08

1976 7.3 6.1 12.0 13.8 2.26

1977 7.1 5.9 11.9 12.8 2.18

1978 7.1 5.9 11.9 1 ...8 2.18

NEEDED HEALTH SERVICES'

As noted previously, the lifetime health experience of both the mother and father can affect the health of their children; healthy people are more

likely to have healthy offspring. This section concentrates on the health

services related to conception, gestation, birth, early life, and parenting. Some of the listed services would benefit every woman, newborn, or "parent; others are not needed by everyone; still others address the needs of especially vulnerable families.

In Anticipation of Pregnancy

Health education conducted at the school, the health-care delivery site, and through the mass information and entertain- ment media, especially television, beginning at the preschool

level and continuing throughout life with particulzr emphasis on

the following: Knowing the needs of one's own body, such as the composition of a healthy diet and requirements for exercise, sleep, and

relaxation.

Identifying activities that promote health and prevent disease

and disability. Family life and sex education, including accurate information

about contraception. Awareness and understanding of the menstrual cycle and

knowledge of the signs and symptoms of pregnancy.

(I)

ITIUS section is derived from several references in addition to the composite experience of a nurse

midwife, an obstetriciau-gy necrologist. and a pediatrician. These health services are primarily derived from

the needs ascribed by the relevant characteristics of women of childbearing age.

213
214

The potentially harmful effects of communicable diseases, alcohol, ionizing radiation, drugs, and smoking especially

during the early weeks of pregnancy (women attempting to

conceive should consider themselves as potentially pregnant even before the precise recognition of pregnancy and should

avoid these hazards). The need for preventive health services, especially early

prenatal care. (2) Nutrition services, including nutritional counseling and information about the availability of food assistance programs such as Food Stamps. (3) Quality medical care services for the detection, diagnosis, and

treatment of acute and chronic diseases, including sexually

transmissible diseases, and immunization against preventable

illness, especially rubella. (4) Mental health services, including crisis intervention services,

continuous services for management of sustained distress, and

prevention of emotional and social problems through supportive

services in anticipation of known stressful life crises, e.g., premarital and marital counseling. Mental health services can be provided in a variety of settings, including private offices, clinics, hospital outpatient departments, neighborhood health centers, or wherever individuals obtain their regular health care. Providers may include trained professionals other than psychiatrists or

psychologists. (5) Pregnancy testing with referral, as appropriate, for counseling, family planning, abortion, prenatal care, or infertility diagnosis and treatment.

(6) Family planning services including information, counseling,, and

outreach to schools, community groups, and youth organizations; wide-scale advertisement, sales (including vending ma- chines), and free distribution of nonprescription contraceptive methods; information, counseling, and provision of condoms to males, especially in connection with sexually transmissible disease control services; clinical contraceptive services in family planning programs and incorporated into regular comprehensive health services, and voluntary sterilization for both men and

women; (State laws that prohibit the provision of family

planning services to adolescents are an obstacle to teenagers

seeking care.) (7) Genetic screening and counseling, especially for population groups known to be at special risk for specific genetic diseases

From the Recognition of Pregnancy

to the Onset of Labor

(1) Prenatal Care Services: Identification, treatment, and management of any physical and/or mental health conditions existing before pregnancy.
Continuing assessment of the pregnant woman and fetus directed at prevention, early detection, and management of potentially threatening conditions, e.g.. screening for hyperten- sion, diabetes, Rh isoimmunization, anemia, abnormal fetal

development, and unusual emotional stress. Screening, diagnosis, and counseling for fetal genetic disor- ders, with counseling and second-trimester abortion services available as desired by the parents. Early identification of the actual or potential high risk

pregnancy with arrangements for appropriate prenatal, intra- partum and newborn care based upon the risk status of the pregnant woman and her fetus; and transportation of the pregnant woman and her intrauterine passenger to a facility

capable of the appropriate level of care as necessary. (Approximately two-thirds of high risk newborns can be anticipated by

careful anteparturn evaluation. This enables the mustering of resources and planning for necessary care well in advance of

the birth, thereby preventing many complications.) Information, support and counseling, as needed, on the marital relationship, relationships between the parents and

other children in the family, and other associated emotional and social changes coincident with pregnancy and birth to

assist the woman and her family to make healthy adaptations

to the effects of pregnancy and approaching parenthood. Continuing education to enable the pregnant woman to adopt behaviors that serve to proteOt and promote the health of the

fetus, e.g., optimal nutrition, avoidance of occupational and

environmental hazards, limiting X-ray exposure, eliminating

the use of cigarettes, alcohol, and teratogenic drugs, avoiding

exposure to sexually transmissible diseases, and minimizing

the likelihood of physical injuries. (Continuing education for health care providers is also necessary, in order to alert them

to the dangers of prescribing unnecessary drugs or X-rays for women who are or could be pregnant.) Availability of education to prepare the pregnant woman and her husband or other support person to be active participants during labor and delivery. (Such preparation appears to

contribute to improving pregnancy outcomes and may en- hance the childbirth experience in ways that promote healthy

family bonding. With good preparation pregnant women are better able to cope with the pain and discomfort of labor without anesthesia and analgesia, thereby reducing the mater- nal and fetal risks associated with all forms of obstetric

anesthesia and analgesia and eliminating costly anesthesiolo- gy. Childbirth education classes are widely available except in

rural areas and small towns. The classes are usually organized

and provided within a private market outside of the traditional medical care system. Some private h....alth care insurers

reimburse for the cost of such classes if a physician "orders"

them. They are not separately reimbursed by Medicaid. These

215

2. b G.
policies do not provide sufficient incentives for providers to

.firer such services. Although most obstetric care organized

..:cifically for poor women includes an educational compo-

-v° prepare them for the experience of labor and delivery.

. -antity and quality of preparation for poor women is often less than that which is available to middle class women

through private organizations such as the International Child- birth Education Association. Since low-income pregnant women often need more medical attention and have less

understanding of female physiology, their needs for education

are often greater. and preparation should be more extensive.) Information to prepare the mother and father to meet the physical. emotional, intellectual, social, and health needs of

their newborn, including information on the importance of breast feeding, and when and how to introduce other foods;

the importance of holding, touching, comforting and verbally

stimulating the infant; the importance of social interaction

and smiling; the infant's need for visual stimulation and for safe and appropriate toys; the importance of always securing

the infant in a proper restraint when riding in an automobile; and information to address special concerns of the parents. Special programs for pregnant school-age girls to permit uninterrupted education or vocational training and to provide

special instruction and support tailored to the special needs of pregnant adolescents regarding nutrition and self-care during pregnancy preparation for labor and delivery, and infant growth, development and care. (These "special" programs should be in addtion to the regular school curriculum. Pregnant adolescents who wish to continue their regular school program must be allowed to do so.) Intermediate levels of care to allow for better management of conditions that may not require hospitalization but that require more than routine outpatient care (e.g., the manage- ment of a pregnant women with diabetes, questionable pre- eclampsia, or threatened premature labor), perhaps by fre- quent nurse home visits, hospital day care, or nurse-supervised

residential care.

Availability of 24-hour telephone consultation with a nurse or physician member of the obstetric care team. Nutrition services and nutritional supplements from programs such as the Special Supplemental Food Program for Women, Infants, and Children (WIC). An antenatal pediatric visit to arrange for the health care of

the newborn. Social and legal services for crises inteigintion, securing

proper housing and food, and obtaining homemaker services

and/or residential support for pregnant women without adequate family support, especially adolescents, women plan- ning to give their babies up for adoption. and victims of domestic violence.

216
(2) Counseling for women with unplanned pregnancies, with referral and assistance in obtaining necessary services including, where desired. support services for continuation of pregnancy. placing

the newborn for adoption, and first and second trimester abortions.

(3) Medical services related to spontaneous abortion including, when indicated, counseling regarding future reproductive pros- pects and alternatives.

Onset of Labor to 1 Week Following Birth

The setting for birth, the category of trained birth attendant, and the precise management of labor, delivery, and the immediate period

following birth are dependent upon the risk status of each individual pregnancy, the mother's choice, and local resources. Minimum necessary

perinatal care in every case should consist of: (1) Continuing observation by a trained attendant of the progress of

labor and condition of the mother and fetus throughout labor. (Observation should be systematic with careful documentation, increase as labor progresses, and be uninterrupted during the

second stage. Electronic monitors may be used to augment observation by a nurse, midwife, or physician, especially in high- risk cases, but should not replace direct clinical observation or clinical judgment.) (2) Immediate medical backup for diagnosis and management of

threatening conditions and obstetrical emergencies, including the capacity to perform a safe cesarean section delivery when

indicated_ (Backup support includes effective telecommunications consultation, and efficient direct transport to a perinatal center for services that are not available onsite. It is not

advisable for labor and delivery to be managed in settings that cannot provide for emergency stabilization of the parturient who

experiences an obstetrical emergency or for emergency resucitation and stabilization of the newborn. Labor and delivery should not be managed routinely in settings that require more than 15 minutes travel time to a hospital with facilities and personnel to perform a cesarean section or provide care for the critically ill newborn.) (3) Physical and emotional support for the woman in laboroften

best achieved by the presence of the laboring woman's husband

or friend who has been prepared to provide this support- -as well as sensitive and skilled nursing care. (4) Assistance to the mother provided by a trained attendant, i.e., a physician or nurse midwife, during the actual birth. in order to

deliver the baby gently, without undue delay, and in a controlled

manner.

(5) Immediate evaluation of the newborn with skilled resuscitation

capability available onsite.

217
218

(6) Sensitivity, attention, and at:corn- ation to the mother's and

father's physical, emotional, and social needs and desires during

their childbirth experience. (7) An effective system for communication, referral. consultation, transportation, exchange of medical records, exchange of pay- ments, and continuing professional education that integrates all components of perinatal care into an organized network of

resources responsive to the continuum of needs within a

community. (8) Rh isoimmuniz' ation prophylaxis to reduce the occurrence of

erythroblastosis fetalis, a fatal blood disorder in the newborn. (Rh immune globulin should be administered to all unsensitized, Rh negative women who deliver an Rh positive infant, have a

spontaneous or induced abortion, have an ectopic pregnancy, have an intrauterine death, or undergo araniocentisis performed without sonography.) (9) Availability of postpartum voluntary sterilization procedures

following vaginal delivery or in conjunction with operative deliveries for women who desire them.

(10) Supervised instruction of the new mother during her postpartum

hospitalization regarding infant care skills, including breast feeding, taking the infant's temperature, and recognition of the

signs of illness in the newborn. (Having the mother and newborn

"room-in" provides an opportunity for supervised continuous contact between the new mother and her newborn and promotes and facilitates care and breast feeding by the new mother. New

obstetric units should be designed and old ones remodeled to

accommodate rooming-in. State and local hospital licensing

criteria often need to be relaxed to permit this practice. Maternity hospital practices will often need to be changed and

personnel reoriented and trained to assist mothers with breast

feeding and to promote early maternal-infant bonding. Success- ful establishment of lactation and maternal-infant interaction

can be disrupted by many current "routine" hospital practices.)

(11) Homemaker services as necessary during the mother's hospitali- zation and early convalescence at home, especially following

cesarean section delivery (and for mothers with other children

and no family support). (12) Nurse home visits as an extension of the obstetric and/or

pediatric care, providing education, health assessment, parenting

skill development, and assistance in arranging necessary followup medical care. (13) Identification of available medical and nursing community

consultation resources for parents who experience problems with

breast feeding or infant care, or who have other concerns in the

interim between discharge from the hospital and the first

planned well-baby visit (14) Counselling and legal services, especially for adoption, place- ment, foster care, or financial support from an absent father.
(15) Education and counselling regarding postpartum family planning and self-care before the usual 4-6 weeks postpartum

examination.

(16) Availability of bather contraception for use before the postpartum examination.

(17) Availability of skilled nurses to instruct new mothers in breast

feeding techniques, to encourage and support the new mother in

establishing a satisfactory breast feeding pattern, and for

consultation if problems arise.

Newborn services

With the transition from intrauterine to extrauterine existence, there are

new requirements for health care. The healthy newborn and the sick

newborn require separate independent attention.

(1) Imrnedi- e newborn care, including evaluation of the newborn

immediatmly following delivery, with rapid initiation of appropriate treatment including nasal-oral suctioning, keeping the infant

warm, observing for signs of distress, and promoting early

contact between the mother, father, and newborn.

(2) Continued observation by a trained attendant able to evaluate

the infant's success in adapting to extrauterine life, even for

newborns not identified as in distress at the time of birth.

(3) Skilled resuscitation and stabilization capability by trained

personneL (Even after a completely uncomplicated pregnancy,

unpredictable events during labor and delivery may result in the

birth of an ill newborn who requires immediate resuscitation.) (4) Referral and safe, rapid transportation of sick irfants to

newborn intensive care centers.

(5) Screening tests for inherited metabolic diseases for all newborns,

in order to prevent certain causes of mental retardation and

chronic ill health such as phenylketonuria (PKU), hypothyroidism, and others. (6) Continuing pediatric health supevision in the hospital, with

clear arrangements made for comprehensive care of both highrisk and normal newborns after discharge.

Later Postpartum Period (First 4 to 6 Weeks)

(1) Availability of 24-hour telephone consultation with pediatric

care provider or public health nurse.

(2) Social work services as needed to assist with economic and social

problems. (3) Availability of mental health services for crises intervention and

postpartum depression. (4) Availability of nutrition programs, such as WIC and Food

Stamps.

2kJ,

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(5) Comprehensive primary care for both the mother and infant with initiation of contraception as desired and immunizations for the

infant including a general discussion of how the family and the infant are adjusting to one another, and a review of infant care practices.

Services for Parents

(1) Mental health services, particularly in cases of family crises or domestic violence, and to meet general needs for psychosocial support. (2) Parenthood education. (3) Availability of day care for infants 6 weeks and older, especially

for school-age mothers. (4) Social work services as necessary, e.g., assistance in obtaining Medicaid eligibility, food stamps, legal services required to

obtain financial support for the child from its father, planning for future education, training, and employment.

Pregnant Adolescents and Adolescent Parents

The provision of obstetric care to adolescents is often complicated by their unreadiness for pregnancy coupled with a suspicion of the adult world. At a time when they need a great deal of support and help from adults in understanding and coping with the physical, emotional, and social changes they are experiencing, they are likely to be confronted with

a largely authoritarian situation in which specific practices and procedures must be strictly followed in order to minimize the risk of a poor pregnancy outcome. Pregnant adolescents need health care providers to reach out in nonjudgmental and flexible ways (73). In addition to the health services needed by other pregnant women, pregnant teenagers and teenage mothers have special needs: (1) Prenatal care services that follow the pregnant adolescent closely; primary and preventive health services to prepare the young mother for labor, delivery, and caring for her newborn infant

(2) Screening for and treatment of sexually transmissible diseases (including all contacts). (3) Primary pediatric care that emphasizes support and outreach for both the newborn and the young mother. (4) Health education regarding sexuality, relationships, contracep- tion, and family life. (5) Educational and vocational services to assure that young mothers continue their education and or receive appropriate job training. (6) Adoption counseling, social, and legal services.

220

2 3
(7) Child care services to enable young mothers who wish to

continue their education or to enter the job market to do so. (8) Homemaking education including instruction in budgeting.

purchasing. and planning and preparing nutritious and balanced meals for herself and her infant.

(9) Counseling for the family members (an adolescent pregnancy can be extremely stressfial to the teenager's entire family; cow/m.4h% should also be available to the young father and his

family.) (10) Transportation and outreach services. (Physically getting to provider sites can be difficult for adolescents in low-income

urban areas as well as rural areas.) (1 1) Counseling to identify child abuse and neglect with initiation of

special support to avoid further problems and prevent the

development of a destructive pattern of parent-child interaction.

ISSUES AND IMPLICATIONS ASSOCIATED WITH NEEDED SERVICES

The enumeration of needed health services for pregnant women.

infants, and families in the previous section has significant implications

for the delivery of health care services in the United States. This section

elaborates on several of them.

Defining the Health Needs of Women

Health care services should be determined by definite health care needs. However. to determine health care needs, a clear understanding of the

concept of health is required. The definition of health is, however.

controversiaL More than just the absence of disease, health seems to defy precise definition. The World Health Organization's definition of health

as a complete state of physical, mental, and social well-being is broad and all encompassing. Others have suggested that health is the absence of

-hyper-untoward-eventitis,"2 while still others propose that health is the

state of maintaining equilibrium in response to disruptive elements. Even

if we could agree upon a qualitative meaning for health, measurement of

health status would remain an enormous task beset by many hazards. In practice the concept of health status is usually approximated by an

inventory of characteristics that appear related to the population's health

without regard to a precise definition of health. Traditionally, survival measures are the principal health status indicators. However, these

measures are too narrow to accurately reflect the notion of well-being that

2A. E. Hellegers. Director. Kennedy Institute for the Study of Human Reproduction and Bioetbics.

Pe:soma ociinmunication. August 1977.

2tl 0

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is central to the concept of health and hence provide only limited

information upon which to determine a population's health needs. Health needs can be thought of as a set of necessary conditions that enable individuals to positively and successfully achieve and maintain

adaptive homeostasis in response to changing or threatening stimuli. In

this sense health promotion activities are the set of actions designed to

facilitate behavioral and environmental changes conducive to health (74). The health needs of women can be categorized as: General health needs such as:

Routine health maintenance care

Health promotion and disease prevention practices Adequate nutrition Exercise

Appropriate medical care for identification, detection, and management of acute and chronic physical and emotional conditions

Dental care

Health information and education

Health needs related to the female reproductive system: Prevention of unwanted pregnancies and births Prevention, early detection, and management of conditions

related to the reproductive system and processes Special health needs of women of childbearing age: Proper diet and nutrition for maintaining appropriate height, weight, and hematocrit Sustaining the motivation, knowledge, and means to prevent unwanted pregnancies and births Avoidance of potential hazards such as radiation from environ- mental or occupational sources or unnecessary radiation

associated with medical and dental screening, diagnosis, and

therapy Proper medical treatment and/or management of acute and

chronic physical and emotional conditions Establishing immunity to rubella; establishing healthy and

satisfying social relationships and sexuality The obstetrical community refers to the health care of women not currently pregnant, as "interconceptional care" (75). Interconceptional care begins with the care provided during the postpartum period and

implies a "continuum of care flowing dynamically and continuously from

prenatal and intrapartum care" (76). Essentially it consists of periodic health examinations throughout the entire cycle of human reproduction beginning at birth and carrying through infancy, childhood, adolescence

and young adulthood, ending at conception, and resuming again postpartum. It continues cycling for the infant to conception, and for the woman

to the next conception or the menopause (75). The concept of intercon- ceptional care carries a significant bias; all health care for women is characterized in terms of a central eventpregnancy. The connotation is

that women are always in a state of "mother-to-be" during the reproductive period. In other words, the time of nonpregnancy is merely an

222 9 ,
interlude between pregnancies. Although procreation is central to human

existence, the notion that from birth through menopause a woman's motivation and responsibility to achieve optimal health status are based

solely on reproduction denies the importance of health for the woman herself: It also ignores the importance of health care for women who

choose to remain childless or to limit childbearing, and for women beyond

their reproductive years. As a consequence of this concept, many women perceive their obstetrician-gynecologist physician to be responsible for

their total health care. In some instances this may be effective and

beneficial. However, health services should be organized to optimi' e all aspects of health divest of limited categorical objectives. Not all medical conditions can be handled by the obstetrical-gynecoloecal practitioner. Some conditions may go undetected because of a different threshold of problem identification. In addition, after menopause or sterilization, many women "drop out" of the obstetrical-gynecologil primary health care

system and may end up out of the health system entirely.

Health Education

A significant proportion of reproductive or child health problems can

be prevented or ameliorated by changing maternal or parental behavior. Whether health education is effective in changing behaviors that influence health is uncertain. This question is critical, however, because of the need

to appropriate limited resources efficaciously. Some authors contend that greater investments in health education targeted to reducing selected

problems in selected populations have a greater yield for less cost than a

comparable investment in medical care. Unfortunately, health education

and medical care are sometimes viewed as mutually exclusive strategies, rather than as synergistic components that may work best together. Effective health education to reduce the reproductive and family health problems addressed in this paper will require collaboration between the health, education, and public communications professions. Teaching/learning materials and curricula need to be developed, as well as methodologies for effectively getting the message across. Programs are needed that will both train health care providers to be effective teachers and provide accurate health information to educators. There are serious problems regarding reimbursement of health practitioners for providing health education services. Current health inszrance plans that only reimburse for diagnostic and therapeutic procedures and

ignore health care provider costs related to patient or public education are disincentives for providing health education. In addition, physicians, who

are the most prestigious and powerful actors in the health care arena, receive little medical school instruction in effective teaching techniques. As a result, health education commands little attention in the practice of medicine and is often delegated to other less influential members of the health care team. Even though such delegation may be appropriate, the

result is that health education lacks the status and priority accorded to

procedures performed by physicians

223
Family Life Education and Sex Education

Although controversial, sex and family life education have fairly broad

support within our society. The results of a recent poll indicate that 78

percent of the American public now favor sex education in the schools.

Only 65 percent favored it in 1970 (77)_ Although 41 percent of those surveyed think that parental permission should be obtained, 37 percent think children should

receive sex education regardless of their parents' views. 84 percent of the people who favor sex education in school think

that it should include principles of ethics and responsible sexual behavior: 72 percent think it should be taught in school because parents do not deal with the issue at home. 68 percent of the people who favor sex education in school do not

think that sex education at school leads to more teenage sex before marriage: 59 percent think that sex education should be taught to

children 12 years old or younger. From these data it appears that fears about parental opposition toward

sex education are unfounded. When assessing parental attitudes, a distinction should be drawn between resistance and opposition. Resistance is usually manifest by parents who feel a lack of knowledge concerning the "what, when, how, and who" of the program and can be

avoided by keeping the parents well informed about program details. Although physicians are considered by parents to be among the most appropriate leaders of sex education programs, they are among the least likely to be sought out by young people who want sex information. Training in human sexuality has become "standard" in U.S. medical schools only very recently. Involvement of representatives from the total community, including lawyers, parents, religious leaders, businessmen, Health service providers, youth organization leadership, and students, are

important for successful and long-lasting sex and family life education programs that are effective and relatively free of diverse community

conflict.

Although the effects of sex education programs on psychological health

and interpersonal relationships or on reduction of unwanted teenage pregnancies are unknown, efficacy surely depends upon the curriculum, the setting, and the teachers. Instruction regarding human sexuality, although fundamental to the well-being of society, is often excluded from

organized school systems. Where it is a part of the curriculum it is often mediocre and inadequate. There is great variation among sex and family

life education courses. Methods need to be developed and validated with which to evaluate these programs.

Prenatal Care: Is It Worthwhile?

Quality prenatal care is considered essential to an optimal pregnancy outcome for both the mother and the infant. Prenatal care is defined as

the continuous surveillance and management of expectant women

224
throughout their pregnancies (76). It encompasses identification of highrisk pregnancies; application of accepted methods to prevent, detect, and

treat pregnancy complications; attention to unmet nutritional, social, emotional, and physical needs; and education to prepare the pregnant woman for the demands of pregnancy, childbirth, future self-care, and

infant care.

The American College of Obstetricians and Gynecologists recommends a routine schedule of prenatal care visits: every 4 weeks until the 28th week of gestation; then every- 2 weeks until the 36th week; and thereafter every week until delivery (78). Although adherence to this schedule may

provide a setting for quality prenatal care, it does not ensure it. Frequency of visits should not be confused with the appropriateness and quality of

the services provided during a visit_ The complete inventory of prenatal services specified in the previous section is not provided to most pregnant women in this country_ Often the physical aspects of pregnancy are well attended to, while the social, emotional, and educational needs go unmet. Nonetheless, prenatal care currently offers the best available approach

for preventing untoward pregnancy outcomes, especially low birth weight The 1973 Institute of Medicine Kessner Report concluded that "adequacy of (prenatal) care is strongly and consistently associated with infant birth weight and survival" (79). This report further concluded that if all women

had the pregnane:y outcomes of those receiving adequate prenatal care, the

-overall infant mortality rate for their study cohort could have been

reduced by as much as one-third. Many other factors are also associated with, and/or affect, pregnancy outcomes, including the expectant moth- er's behavior, nutrition, education, height, weight, economic status, and

cultural background. The relative influence of any one of these factors is difficult to isolate.. Further, since those expectant mothers who are at highest risk due to social factors are least likely to receive early and

adequate prenatal care, the extent to which improved access to services could actually improve their pregnancy outcomes is difficult to determine. Reasons why many women still do not receive adequate and timely care

include the following: Prenatal care is frequently not covered by third-party reimburse- ment programs; Medicaid does not cover first pregnancies in most States.

Where covered, Medicaid reimbursement levels are often so low

that many practitioners do not accept Medicaid payments. Distribution of professionals trained to provide necessary services

is limited and uneven, especially in isolated rural areas. Medi- caid's current policy of only reimbursing physician services discourages nurse midwives from working in some areas of great need_

Some obstetrical practitioners have shifted away from providing maternity care. Some factors contributing to this change include ambiguous malpractice liabilities and consumer pressure for changed obstetric practice. There is inadequate coordination among the many publicly

supported programs responsible for providing prenatal care, and

between public programs and private providers of these services_

225
Many of the highest risk pregnant women lack motivation to seek

care. Many low-income women are accustomed to episodic-crisis care provided in public facilities that are in disrepair and

unattractive, relegating their use to dire emergencies only_ There is a lack of outreach to assist women in getting care, partly because many public health departments have discontinued or greatly reduced home visits by public health nurses. Health education or information to make all women aware of the

importance of prenatal care has been insufficient and/or ineffective. Few health activities have as much potential for promoting health as quality prenatal care services.

Childbirth Care: Over Medicalized?

It is widely recognized that pregnancy, birth, and parenthood are

stressful events that require major life changes. Some investigators are beginning to accumulate data to show that the experiences people have and the adjustments they make at che time of family formationthe time of the first birthmay have long-term effects on the quality of their family

life (80). In addition, most parents, especially new mothers, need

information and help to prepare them to care for their newborn infants in ways that both protect and promote the infants' physical, emotional, intellectual, and social health, growth, and development. Professionals working with expectant and new parents find them remarkably open to

childbirth education and counseling. Even people who would never consider using a -mental health" service often find it acceptabi,-. to seek

and participate in counseling and classes aimed at helping them to prepare

for and cope with the changes attendant to pregnancy and birth, and to

prepare themselves to be good parents. Despite general agreement that many expectant and new parents need

education, support, and counseling, a meager proportion of the available

resources, measured not only in dollars, but also in the creativity, interest, and energy of those who plan and provide maternal health care, is devoted

to these services. Medical and technological components of care compete much more successfully for the same resources. Some of the most creative,

energetic efforts at approaching these problems come from groups such as

the LaLeche League, the International Childbirth Education Association, Parenthood Effectiveness Training, and women's movement groups, most of which operate completely outside. of the third-party-payment health

care system. Rarely do the women and families who are most at risk and

in need avail themselves of the services offered by these groups. Although we give priority to the physical health needs of the pregnant woman and developing fetus, it is important to remain attentive to, and

emphasize the emotional and social importance of, the experiences that pregnant women, expectant fathers, and other family members undergo during pregnancy, childbirth, and the first months after a new child,

especially a first child, is born. This sensitivity often yields to the preeminent medicalizing of the birthing process. The opposing philoso- phies regarding intrapartum care typify this dichotomous perspective. One

226 2
approach, although mindful of potential complications, assumes that pregnancy is a priori normal. The other philosophy assumes that a pregnancy cannot be proven normal until it is over, and therefore

approaches each pregnancy as if it were high-risk. There is substantial disagreement about which approach yields the best results. Three

questions are central to this debate. Where. should childbirth take place (Le., community hospitals, regionalized perinatal centers, organized childbirth centers not part of a hospital, homes)? Who is qualified to assume responsibility for the care .3f women

during labor and delivery? What are the risks and benefits of the use of certain forms of

"childbirth technology"? Each of these questions bears directly on the primary focus of this paperwhat health services are necessary to support healthy reproduction? Controversies related to these three questions are discussed.

Childbirth in Nonhospital Settings?

An increasing proportion of pregnant women in America are currently

choosing to give birth in settings other than hospitals. Some choose home

birth because they prefer the experience of giving birth in the comfortable and familiar surroundings of their own homes. Others deliver at home or

in childbirth centers in order to avoid "routine" medical procedures and hospital practices, such as intravenous infusion, confinement to bed, unsolicited medications, clinical environments, electronic fetal monitoring, limited contact with the newborns, regimented infant feeding, endless vital sign zr .msurements, and so on, that they anticipate would be uncomfortable, possibly dangerods, and unnecessary interferences to the

joyful celebration of childbirth. To achieve control of their childbirth

experience, some parents are willing to risk the absence of medical services.

Although less than 2 percent of U.S. births occur outside of a hospital, there is a definite trend toward nonhospital births, especially in selected States. For example, the number of nonhospital births in Oregon

increased from 168 births (0.5 percent of the total number of births) in

1963, to 1,492 births (3.9 percent of the total) in 1977 (81). Currently at

least six national organizations of lay and professional people support and

promote home births (82). Although perinatal mortality rates for out-of-hospital deliveries are

consistently much higher than rates associated with in-hospital deliveries

(83), the data are confounded by high death rates for births that occur at home unexpectedly. Precipitous births of very premature infants, whose mothers may not have even realized that they were in labor, and births which occur at home because of lack of planning or lack of access to

hospital care often have poor outcomes. Proponents of home births and birthing centers have reported very good outcomes associated with

planned out-of-hospital births attended by qualified physicians, nurse midwives, or experienced empirical midwives within organized home birth

services or freestanding maternity centers (84-86). In order to evaluate

223 227
fairly the risks of nonhospital births, the out. z.omes of attended out-ofhospital childbirth for women judged to be low-risk before the onset of

labor should be compared with outcomes for similar tow-risk women who

give birth in hospitals. Nonhospital childbirth centers have been organized in many cities with

the aim of providing an acceptable and safer alternative to home births. In

most cases these centers serve only prescreened, low-risk women who have participated in a full program of prenatal care and childbirth education.

Physical care is usually provided by an interdisciplirmry team, often

consisting of nurse midwives with backup by obstetricians, pediatricians,

nurses, and auxiliary health personnel A system for rapid transfer in

emergencies usually includes prearrangement with an ambulance service

and a nearby acute-care hospital. To date all published assessments of such centers suggest that they are both safe and economical (83, 86, 87).

Women who seek attended home or birthing-center deliveries have been

described as inherently low -risk because they are a self-selected healthy

group who are knowledgeable about pregnancy and childbirth and motivated to comply with advice about smoking, nutrition, and prenatal

care (84). There is no guarantee that as the trend grows, the currently

restricted low-risk criteria will not become relaxed, and women who are

known, a priori, to be at some obstetrical risk will deliver at home or in

nonhospital birthing-centers. Moreover, a proportion of low-risk women

do not remain low-risk throughout the intrapartum period and may

require specialized technical assistance. Although most alternative childbirth services have developed outside of,

and frequently in conflict with, local traditional systems for regulating and

controlling health care, there is a growing need for the conventional and

alternative systems to communicate and work together. The following are

examples of such efforts: New California State regulations were established to set standards

for alternative, home-like birthing centers.3 One District of Columbia hospital granted hospital privileges to

an independent, incorporated nurse midwifery practice. Home birth practitioners were invited to participate in the

continuing education program of the Oregon Perinatal Regional

Program. Blue Cross/Blue Shield of Greater New York decided to reimburse for childbirth care provided by a nonhospital childbearing

center in New York City.

Perinatal Regionalization: Improved Access to Quality Medical Care?

Regionaii7_aiion of perinatal services involves linking community hospitals; academic medical centers; obstetricians, pediatricians, and other physicians in private practice; health department and other maternity clinics; and laboratories into a network of services to identify

3National Association of Parents and Professionals for Safe Alternatives in Childbirth- Personal

communication.

228
high-risk situations and to ensure that all pregnant women and newborns have access to the appropriate level of prenatal, intrapartum, and neonatal health care. Successful implementation of such a system requires effective communication, a program of continuing education, and arrangements for referral, transportation, and transfer of patient records and payment for services (88). One assumption underlying the concept of regionalization is that hospitals with fewer than 500 annual deliveries are inefficient and unable

to provide high quality care to high-risk mothers and infants (88). The

continued existence of small community hospital maternity and newborn

services is discouraged except where unusual geographic, climatic, and

transportation problems would make it very difficult for local women to

use a larger service elsewhere (89). Although a multilevel care system that matches the intensity of health

care to the pregnant woman's and infant's degree of risk seems reasonable and beneficial, problems with implementation of regionalized prenatal care systems are arising. There is a tendency to refer in a unidirectional manner only to a higher level of care; high-risk patients are referred to the

tertiary care level while referrals of low-risk patients to less intensive and

less costly care may not occur at all. The closing of obstetric services in

small community hospitals discourages obstetrician-gynecologists from

practicing in smaller communities, thus making it harder for women in

some areas of the country to get either prenatal or intrapartum care. The assumption of a cost-benefit advantage to regionalization may not be

justified if the allocation of scarce resources to costly perinatal and

neonatal tertiary care centers does not produce better results than would

result from equal expenditures to improve prenatal services (89). Finally, some impediments to regionalization persist: bureaucratic obstacles to

intercounty reimbursements: inadequate funding of continuing education programs for primary and intermediate level hospital personnel; and

failure to solve problems associated with transfer of individual patient medical records (referral of patients without their complete records leads

to costly and sometimes detrimental duplication of services).

Obstetrical Manpower: Are Nurse Midwives the Answer?

A nurse midwife is a health professional educated in the two disciplines of nursing and midwifery. The American College of Nurse Midwives

(ACNM) approves educational programs that prepare registered nurses to become certified nurse midwives (CNM's) skilled in providing the health

care needed by essentially normal women and their babies during

pregnancy. labor, delivery, and the postpartum-postnatal period. Nurse midwives are also qualified to provide gynecologic care, including family planning, to healthy women who are not pregnant. Nurse midwives work

in association with obstetrician-gynecologists or other physicians. to whom they refer patients with high-risk conditions or complications. Currently nurse midwives are licensed to practice in every State except Kansas.

Professional midwives have been and continue to be the primary

providers of obstetrical care in much of the world, including Great Britain

229
and many Western European countries. Professional nurse midwifery was

introduced in the United States slightly more than a half century ago to provide quality maternal and infant health care to populations that had

high rates of maternal and infant morbidity and mortality and little or no

access to traditional medical obstetric care.

In this country, nurse midwifery has grown relatively slowly until very

recently. In 1976 approximately 1,000 nurse midwives were working in the United States. Only about 650 of them were in clinical practice, delivering approximately I of every 100 babies born in this country that year. Two-thirds of those in clinical practice had graduated as nurse midwives during the prior 6 years. Between 175 and 200 new nurse midwives are certified each year. A study conducted by the ACNM in

1976 described the current practice of T.J.S. nurse midwifery (90). Of those nurse midwives in clinical practice, at least 90 percent provide outpatient prenatal care and family planning services; approximately 85 percent manage labor and delivery and perform

postpartum physical examinations. Except for immediate attention to newborns following birth, relatively few nurse midwives assume responsibility for neonates or provide later well-baby care; most of their contributions to

infant care are directed at education and support of mothers. 60 percent of them teach organized series of classes for their patients and for other clients. The largest proportion of nurse midwives (46 percent) are employed by hospitals; 14 percent are employed by public health agencies, and 13 percent are in private practice with one or more physicians. Nurse midwives also provide care to military personnel and dependents, college

students, and women enrolled in prepaid health maintenance plans. Ten percent of them work in nurse midwife managed maternity services or have started private nurse midwifery practices. Although they now serve a broad segment of American women, nurse midwives continue to provide

care for medically underserved subgroups of the population. While nurse midwifery has grown in numbers and popularity in recent years, significant barriers continue to limit nurse midwifery practice. Problems include lack of adequate funding for training, limited numbers of qualified teachers for nurse midwifery educational programs, and

limited third-party reimbursement. (CHAMPUS, the Federal third-party payer for military dependents' health care, reimburses nurse midwives directly; Medicaid does not.) Physician resistance has resulted in limited

access to hospital privileges. Although nurse midwives are needed and

sought to provide prenatal, postpartum, and family planning outpatient services in a variety of publicly funded maternal and infant care programs, many of them refuse to take positions in which they cannot also manage

their patients' care during labor and delivery. Nurse midwives practicing

in public clinics have often been denied privileges at local hospitals. Nurse midwives in private practice partnerships with physicians have had more

success in this area. While most babies delivered by nurse midwives are born in hospitals, limited hospital delivery privileges may be one reason behind the growing trend towards development of nurse midwife

actra.-inistered out-of-hospital maternity centers.

230 2A
Evaluations of nurse midwifery practice have shown it to be safe,

effective, and often cost-saving. Moreover, nurse midwives have proved to

be particularly successful at serving sonic hard to reach groups, such as

teenagers.

Risks and Benefits of Girth Technology

number orlibsrethcgtiostic and- therapeutic techniques have

been developed to improve the management of high-risk and complicated

pregnancies. The current application of these techniques to an expanding

proportion of pregnant women raises questions of safety, need, and

economy. The question of when such techniques are necessary has

particular importance for obstetrical interventions that have as possible

consequences disturbing or disruptive effects upon the birthing process,

increased maternal jeopardy, increased cost, and uncertain short- or longterm benefits for the infant. The balance between the inherent risks, costs

(both human and capital), and benefits of these procedures becomes less favorable as they are used on a larger and larger proportion of

pregnancies with a more dilute admixture of high-risk situations, prescribing to the "abnormal until proven otherwise" philosophy.

Some of the obstetrical practices involved in this controversy are

elective induction or augmentafem of labor, anesthesia and analgesia during labor, artificial rupture f fetal membranes, routine electronic

monitoring of fetal status in nitro (EFM), forceps delivery, and delivery

by cesarean section. Cesarean section and EFM are discussed in greater

Cesarean Section Delivery

The fust recorded successful delivery of a fetus by abdominal surgery

was performed in the year 1500 by Joseph Nufer, a Swiss gelder, in a

heroic effort to save the lives of his wife and child (91-93). In the recent

decade, the rate of babies delivered by cesarean section has risen threefold

to a current rate of approximately 15 of every 100 births. Today, almost

400,000 cesarean sections are performed annually in the United States at

an estimated capital cost of more than Si billion (93, 94). Cesarean

sections are major surgery with preliminary data suggesting a maternal

mortality rate of one death per 1,000 procedures. Approximately one of

every three women who have cesarean sections experience some significant postoperative complications in addition to the human and capital

costs arising from prolonged hospital stays (91-103).

An additional "cost" of cesarean sections is that they may interfere with

important bonding experiences that are normally shared by mother and

infant in the moments and days immediately following birth. Most

mother-infant pairs are probably able to achieve normal maternal-infant

bonding despite encumberances involved with the cesarean section.

However, the stresses and demands associated with care of a newborn

infant are more difficult to cope with when a mother is recuperating from

major abdominal surgery.

219 231
"In general cesarean section is used whenever it is believed that further

delay in delivery would seriously compromise the fetus, the mother, or

both, yet vaginal al delivery cannot be safely accomplished" (92). There are

four major categories of indications for cesarean section:

(I) Labor is contraindicated; the forceful uterine contractions of

normal labor are considered unsafe for either mother or fetus.

(2) Delivery is necessary, but labor cannot be induced.

(3) Mechanical problems of the uterus, fetus or birth canal prevent

the successful or safe progress of labor and vaginal delivery.

(4) Maternal or fetal emergency mandates immediate delivery (92).

The need for a cesarean section is not always clear, however (104). Many

of the indications are not mutually exclusive; rather "a cesarean section

may be necessary because ofseveral indications, no single one of which in

the degree present would justify the operation" (104). Over time there

have been changes in the indications for cesarean section and the relative

importance of one indication versus another. Advances in the development of antimicrobial agents, drugs to control blood pressure, and safe

and available blood and blood products have reduced the incidence and

sequelae of intrauterine infections (amnionitis), toxemia, hemorrhage, and RH isoimmunization sensitization and have reduced the number of

cesarean sections performed for these reasons (105). Why then has the rate of cesarean section delivery increased so

dramatically? A recent government-sponsored study identified 11 principal factors that have contributed to the increase in cesarean sections (95).

Threat of a malpractice suit if a cesarean was not performed and the

outcome was z "less than perfect infant" was the most frequent reason

given by physicl. ns for the increase in the cesarean section rate.

The second most important factor contributing to the increased

cesarean section rate is the general policy in American obstetrical practice

that women who have had a cesarean birth must deliver all subsequent infants by section"once a section, always a section" (98, 102, 106, 107).

Because the scar from a previous cesarean section may create a weakened

section in the uterus, forceful uterine contractions of a subsequently normal labor may constitute a potential hazard to the mother and/or

fetus; thus labor is considered to be contraindicated. The main and often

only indication for approximately one-third to one-half of the cesarean

section operations performed in the United States is a previous cesarean

section scar (91, 92, 104-110). Newer cesarean section surgical techniques

reduce this risk. Data from both the United States and abroad indicate

that at least half of the women who undergo repeat cesarean could safely

deliver vaginally (111). Many physicians, however, continue to perform

cesarean sections without a trial of labor.

The maternal and infant morbidity and mortality that may result from

an automatic repeat section must be weighed against the costs and

benefits, both human and capital, of undergoing a vaginal delivery if there

exists no other indication except fear of the rupture of a previous cesarean

section scar (112). The prejudice inflicted upon a woman's future

reproductive life by the primary section may well be unjustified (113-115).

Additional study and research may possibly lead to widespread agreement

with Schmitz that "once a C-section, not always a C-section" (111).

232
Other factors contributing to the increase in the rate of cesarean

deliveries include (95): Obstetrical trainin.; that emphasizes active management of labor. Physician beliefs given any complication, cesarean section is

safer for the infant.

An increase in the proportion of births to older and younger women, both groups that are at higher than average risk of developing pregnancy complications that necessitate cesarean

section (92, 116, 117). Better medical and obstetric management of women with serious chronic disease, many of whom can now become pregnant and give birth; such complicated cases frequently require cesarean

delivery. An increased incidence of genital Herpes virus in the United States population, combined with recognition of cervical Herpes as an indication for cesarean section.

More frequent diagnosis of fetal distress associated with the use of continuous electronic fetal monitoring (EFM) during labor. Increasing use of cesarean section when the fetus presents in the breech position (107, 118, 119). Although cesarean section deliveries are clearly life saving in many

situations, they are associated with significant risks of maternal morbidity

and mortality . as previously noted_ In addition, mistiming of repeat cesarean sections results in some cases of iatrogenic prematurity, low- weight births, and infant mortality. With the proper fetal maturation

assessment techniques now available in many but not all hospitals, infant

fatalities associated with ill-timed cesarean sections can be prevented (103, 104, 120-123). In order to properly assess the outcomes associated with cesarean

sections, the short- and long-term maternal and infant consequences of cesarean delivery must be compared to ft outcomes of vaginal deliveries of a comparable nature (104, 121, 124). Controlled clinical trials are

needed to provide a sounder data base for making efficacious decisions. An NIH consensus conference on cesarean sections is scheduled for 1980

and should prove valuable in delineating criteria to aid in the judgment -when necessary."

Electronic Fetal Monitoring

Almost 40 percent of all first-time cesarean sections are performed as

the result of emergency conditions thought to seriously threaten the well- being of the mother and/or the fetus. Abruption of the placenta, hemorrhage, fetal distress, and prolapsed umbilical cord constitute the major circumstances necessitating immediate delivery (91). As the

conditions that threaten the well-being of the mother have been steadily overcome by advances in obstetrical practice, more attention has been

focused upon ensuring the well-being of the newborn. The fetal heart rate has been established as a sensitive indicator of intrauterine fetal well-being during labor and delivery (91, 125, 126). Until recently, auscultation of the

fetal heart was performed with the aid of the fetoscope and subsequent

233

2 4
determination of the fetal heart rate calculated by the obstetrical attendent. Today, aided by advances in electronic technology, continuous electronic fetal heart rate monitoring, (EFM), has almost completely

replaced the former technique. EFM produces a permanent record of the

fetal heart rate in association with a record of the timing and strength of uterine contractions. The significance of changes in the fetal heart rate depends upon the absolute fetal heart rate, beat-to-beat variation, and when they occur in relation to uterine contractions (126). The electrode that transmits the fetal electrocardiogram is attached

directly to a fetal presenting part once the cervix is sufficiently dilated, the amniotic membranes have ruptured, and the presenting part is within

reach. If these conditions are not present. the fetal heart rats can be

recorded indirectly by an external transducer attached to the mother's abdomen. With current technology. direct (internal) monitoring provides a better record of the fetal heart rate. The amniotic membranes are

frequently artificially ruptured early in labor specifically to allow direct (internal) attachment of the electrode. The concurrent measurement and

recording of uterine contractions is achieved through a transducer that, in

the case of external monitoring, is attached to the mother's abdomen by a

tight belt. In the case of internal monitoring the contractions are measured by changes in the intra-amniotic pressure measured through a plastic

catheter filled with sterile water, which is placed in the uterus through the

vagina and cervix. Since EFM"s introduction in the early 1960's, this new medical

technology has been rapidly diffused to the point where it has now

become routine on most obstetrical services. This widespread proliferation

combined with the simultaneous exponential increase in the number of cesarean section deliveries has generated a serious controversy among obstetricians, pediatricians, economists, policymakers, and consumers. The current debate focuses upon the use of EFM during labor and

delivery of presumed low-risk parturient& EFM is not without risk; trauma, infection, and even death have been attributed to its use

(127-131). Furthermore, external EFM often requires women in labor to

remain in a supine position, which may restrict utero-fetal blood flow.

Freedom of movement helps many women to relieve labor pain. When

movement is restricted greater use of analgesia and anesthesia is often

required. Internal EFM requires direct attachment to the fetus and

encourages early artificial rupture of the fetal membranes, a procedure

associated with its own complications (132). At best, the evidence establishing the eTicacy of electronic fetal

monitoring in all pregnancies is contradictory ane 4uivocal (133). The

literature is replete with pro and con articles ass .ng the tremendous advantages of electronic fetal monitoring in improving pregnancy out- come or condemning the indiscriminate use of this technology as wasteful, harmful, and responsible for numerous unnecessary cesarean sections

(116, 124, 133-138). Despite this vast amount of literature, few of the

studies are controlled. No benefit from electronic monitoring of low-risk

pregnancies was found in the single large controlled study that stratified

subjects by risk (136). A National Institutes of Health Consensus

234 2
Canfrrence on fetal monitoring concluded that electronic fetal monitoring

can cause harm in a small number of cases and should not be used

routinely (139). In order to resolve the central question of the EF114 debateshould electronic fetal monitoring become the standard state-of-the-art of obstetrical management of labor and delivery for all pregnant women, both high- and low-risk--several clinical issues require resolution (125). Are signs of fetal stress equivalent to fetal distress? What is the predictive value of electronic monitoring as a

diagnostic tool to detect fetal distress (133, 138)? What are the consequences of further "technologizing" and "me of the human birthing process?

Improved Infant Health Service= Are They Beneficial?

It is difficult to quantify the full impact of health services during the first year of life. One example that calls attention to the importance of health services effective in preventing several early childhood conditions is discussed.

Newborn Screening for Metabolic Disorders

Several inherited metabolic or endocrine disorders lead to permanent mental retardation- However, if the disorders are identified and treatment is begun shortly after birth, their disabling consequences can be minimized or avoided altogether. The most widely known of these disorders is PKU (phenylketonuria), a disease that interferes with a child's ability to metabolize a particular protein (phenylalanine) found in a regular diet. Other such disorders include homocystinuria, galactoseinia, maple syrup urine disease, tyrosinosis and hypothyroidism. Hypothyroid- ism is more common, and more easily correctable, but far less screened for

than the other inherited metabolic or endocrine disorders.

Collectively, the incidence of these disorders is low; however, the costs

associated with their neglect are substantial. An estimated 1,000 cases of

these disorders will occur in 1980. If they are not detected and treated, 650

infants will become mentally retarded. Although 90 percent of all infants are reportedly screened for PKU, screening coverage varies by area.

Screening for metabolic disorders other than PKU is much more limited. Based on the number of cases of mental retardation likely to occur with a 90 percent screening rate, and estimating the number of cases of mental retardation likely to occur in the absence of scrcei2ing, $17.4 million in

costs, in 1980 dollars, could be saved through increased screening. The only available treatment for some of these disorders is substitution

of special formulas in place of milk until the infant reaches a specified age. The special and necessary infant feeding formulas are expensive and, unlike a regular infant formula, are not universally available through the WIC program_

235
CONCLUSION

At no other time is the human organism more vulnerable to. and

defenseless against, noxious or injurious stimuli or deprivations, both

physical and psychological, than at conception and during the subsequent

prenatal and postnatal periods of growth. development, and maturation.

The transition from intrauterine to extrauterine life is a particularly

critical time for building a sound foundation for future health. The

pregnant woman and the fetus form a unique, interdependent diad.

Together they significantly influence each other's futures. While a healthy

birth does not guarantee a healthy future. being born of ill or even slightly

compromised health may diminiSh a child's opportunity to realize full

potential and result in consequences borne for a lifetime. Any strategy to

improve the health of children must include avoiding unplanned and

unwanted pregnancies and births, improving pregnancy outcome. improving infant health, and improving the health and skills ofparents. The health status of mothers and newborns in the United States has

improved remarkably since the turn of the century. Federal efforts have

contributed significantly to this achievement_ However. despite this

noteworthy progress, we have not yet achieved all that is possible_ The fate

of an infant born in this country is by no means assured. The enormously

difficult task of the just and effective distribution of limited resources

predominates the current national policy development. Contemporary

health policy debates must therefore consider not only efficacy but cost,

both human and capital, of a particular procedure or service as well_ In

addition. a truly objective assessment of both traditional and contemporary obstetric practices requires not only consideration of the immediate

costs and benefits, but the long-term consequences as well. There is little doubt of the untoward effects of poverty on the entire

family, especially the children. As more and more American women seek

employment to reduce the family financial burden, new concerns

regarding the effects upon the family and society arise. For example. few

data are available that would permit an evaluation of the overall effect, if

any. of the increase in employment of women on pregnancy outcomes in

the United States. The extent to which employed pregnant women and

their fetuses may be exposed to health risks associated with specific jobs or

work environments is a new and challenging public health frontier.

However, safety is not the only concern. The workplace must also become

more flexible to enable both mothers and fathers to work while continuing

to fulfill their responsibilities as parents_ Successful family planning, especially among high-risk women, has

significant potential to reduce infant mortality and improve infant health.

Many of the chara,:teristics that are associated with poor pregnancy

outcomes are nic,u. ;prevalent among women who have unplanned births.

By reducing the incidence of unplanned pregnancy among these high-risk

women, family planning contributes to improved infant health. However,

by far the most significant effect of family planning is to increase the

chance that every child will be born wanted and will be welcomed into a

lov;ng family.

236
The remarkable improvement in maternal survival has allowed us to

give greater attention to optimizing the outcome of birth for the infant and

to the social and emotional aspects of pregnancy and childbirth. While we have made great advances in the treatment of low-birth-weight infants, there has been little progress in the prevention of low-weight births. Low

birth weight is an antenatal problem and it can only be prevented in the prenata! period. Through the early identification of high-risk mothers and

subsequent medical management, prenatal care can effect a significant reduction of infant deaths and life-long handicaps by preventing low birth weight. Improved access to quality prenatal care will not only reduce

infant mortality but also will improve the quality of life for the survivors and reduce the cost of high-technology care for the compromised survivor. A balanced approach to prevention of low birth weight and improvement in survival of low-birth-weight infants is required to ensure continued

improvement in infant health. There is no substitute for a healthy beginning.

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page v. (89) Fleck. A. C.. S. Anderman. and M. G. Medvesky. Hospital Size and Ous :::nes of Pregnancy.

Albany. New York: New York State Department of Health, October 20.1977.

(90) Rooks. J. 11_ S. H. Fischman. E. Kaplan. P. Lescynski, G. Morgan. and J. Witek. Nurse-Midwifery

in the United States: 1976-1977. Washington, D.C.: American College of Nurse-Midwives. 1978. (91) Danforth. David N.. ed. Obstetrics and Gynecology. 3rd ed. New York Harper and Row. 1977.

(92) Pritchard, J. A. and P. D. MacDonald. eds. William's Obstetrics. I 5th ed. New York: Appleton

Century-Crofts. 1976. (93) Jensen. Paul A. and Leonard A. Aaro. "Cesarean Section: Review of a 10-Year Series- Mayo

Clinic Proceedings 40: 338-347,1965. (94) U.S. Department of Health.. Education. r.nd Welfare. Public Health Service. National Center for

Health Statistics. Health -Ur_iieci 174.-acs-1978. Publication No. (PHS) 78-1232. December 1978.

(95) Marieskind. Helen 1. Evaluation of Caesarean Section in the U.S." Washington. D.C.:

Department of Health. Education. and Welfare. June. 1979.

(96) Barclay. David L "ear an Hysterectomy. Thirty Year's Experience-- Obstetrics & Gynecology

35. no. I. J:inuary. 1S70.

(97) Lawaetz. 0. 4: rrci K. Jensen. -Survey Radiography of Abdomen Following Caesarean Section.

with Particular Reference to Caeca! Diameter and the Presence of Free Subdiaphragmatic Gas."

Acta Obstet Gynecol. Send 55.1976. (98) Mulls. Nejdat and James Bates. "Cesarean Section in General Community Hospital.- American

l'urnal of Obstetrics and Gynecology. September. 1961.

240
(99) Seevenson, Charles S.. Charles A. Behney. and Norman F. Miller. Ntaternal Death frown Puerperal Sepsis Following Cesarean Section: A 16-Year Study in Michigan. -"Obstetrics and Gynecology 29. no. 2. February, 1967."

Clan .Green..Srephen L- and Felix.A. Sarubbi. "Risk Factors Associated with Pest Cesarean Sections and

Perinatal Mortality." American Journal of Obstetrics and Gynecologr,y. February. 1958. (101) Avery. Mary Men. "Does Delivery by Section Matter to the Infant?' New England Journal of Medicine 285: 917-918.

(102) Hall, .L Edward. Schuyler G. Kohl. and H. R.- Schemer. "Current Aspects of Cesarean Sections and

Perinatal Mortality." American Journal ofObstetrics and Cymru:doggy, February. 1958.

(1031 Benson, Ralph. C.. Frank Shubeck., William H. Clark, Heinz Berenclo. William Weiss. and Jerome

Dentschberger. 'Fetal Conzpromise During Elective Cesarean Section," American Journal of

Obstetrics and Gynecology. March 1, 1965.

(104) Johnston. Lloyd. W. "Cesarean Sections in Non-Teaching Hospitals" The Canadian Medical

Association 90. Na 20, May 16. 1964.

(Z05) Bryant, Richard. "Cesarean Section in Cincinnati. Ohio, 1950-1959." American Journal of

Obstetrics and Gynecology 81. no. 3. March, 1961. (106) Fitzgibbon. Henry. "Vaginal Delivery After Previous Cesarean, Simon" Canadian Medical

Assoessaioa Journal 85: November 25. 1961.

(107) Case. Barbara D., R. Corcoran, Sir Norman Jeflboate, and G. H. Randle. "Caesarean Section and

its Place in Modern Obstetric Practice." Journal of Obstetrics and Gynaecology. British

Commosswestlth 78. March 1971. pp. 203-214.

(100 Cabe. John B. Are Current Rates of Cesarean Justified?' Southern Afediela JOUraati 71(5). (109) Kohl. Schuyler G., Jessie E. Parkinson, and Marvin A.. Lavenhatir. "'The Hartford Community Obstetrical Study."' American Journal ofObstetrics and GynecololDf. April 1. 1962-

(110) U.S. Department of Health. Education. and Welfare. Public Health Service, National Institutes of

Health. The Collaborative Perinatal Study: The Women and Theis Prcanancies. W.B. Saunders. 1972.

(11 ) Seismic?, H. E. and C. L. Gajewski. American Journal of Obstetrics surd Gynecology 61: 1232. 1951.

(112) Grattan-Smith. Marueem "Caesarean Section Follow-Up Survey-444ov South Wales, 1968.-1969."

The Medical Journal of Australia. April 17. 1971.

(113) Hammonds. A. A. "Cesarean Section in the Young Gravida: A Ten Year Analysis:" American

Journal ofObstetrics and Gynecology 1011: 267-269. January 15. 1968

(114) McGarry. James A. "The Management of Patients Previously Delivered by Caesarean Section."

-Marna/ ofObstetrics and Gynaecology. British Commonwealth. February 1969. pp. 137-143. (115) Crenshaw. Jr. D.E. Darnell Jones, and Roy T. Parker. "Placenta Previa' A Survey of Twenty Years Experience With improved Perinatal Survival by Expectant Therapy and Cesarean Delivery." Obstetrics and Gynecological Survey 28(7): 461-470. 1973- (116) Pedowitz. Paul. Ralph M. Schwartz, and Morley Goldberg. "Perinatal Mortality in Primary Cesarean Section." Obstetrics and Gynecology 14(6): December. 1959. (117) Van Praagh. Ian G. and Harold M. M.TovelL "Primary Carcass Section in the Multipara."

Obstetrics and Gynecology 32(6): 813-825. 1968. (118) Hasa. Stefan. Fetal Mortality and Morbidity Following Breech Delivery. Department of

OBSGYN. Karolinska Instinct. Sabbaisberg Hospital. Stockholm. Sweden, 1976. (119) Brener. W. E.. R. D. Bruce, and C. H. Hendricks. The Characrtcristies and Perils of Breech

Presentation." American Journal of Obstetrics and Gynecology I1a(5): 100-712, March 1, 1974. (120) Dillon. James R_ "A Fifteen Year Survey of Multiple Cesarean Sections." American Journal of

Obstetrics and Gynecology. December I. 1964.

(121) Levine. William. 'Thirty -Year Survey of Cesarean Section." Obstotrics and Gynecology 19(1). January. 1962.

(122) "Caesarean Section and Respiratory Distress Syndrome." British Medical Journal April 24. 1976. pp. 978-979.

(123) Spellary. W. N.. C. S. Mahan. and A. C. Cruz. "The Adolescent's First Pregnancy: A Con troned

Study." Southern Medical Journal 72: 768. 1978.

(124) Hughey. Michael J.. Robert E. LaPata. Thomas McElin. and Richard Lussky. "The Effect of Fetal

Monitoring on the Incidence of Cesarean Section." Journal of Obstetrics and Gynecology 49(5). May 1977.

(125) Hellegers. Andre E. "Fetal Monitoring and Neonatal Death Rates." Tire New England Journalof

Medicine. August 17. 1978.

(126) Hon. E. H. "Apparatus for Continuous Monitoring of the Fetal lileirt Rate." Yale /owns/ of Biology and Medicine 32: 397-399, 1960.

241
(127) Overturf. G. D. and G. Balfour. **Osteomyelitis and Sepsis Severe Complications or Fetal

Monitoring:- Pediatrics 55: 244-247. 1975.

(128) Turbeville. D. S.. R. E. Heath Jr.. F. W. Bowen Jr.. et al. -Complications of Fetal Scalp Electrodes:

A Case Report.- American Journal of Obstetrics and Gynecology 122: 530-531. 1976.

(129) Golden. S. M.. G. B. I4erenatein. W. A. Todd, -Disseminated Herpes Simplex Neonatorirn: A

Complication of Fetal Monitoring.- American Journal of Obstetrics and Gynecology 129: 917-918.

1977.

( /30) Tutera F. and R. 1- Newman. **Fetal Monitoring: Its Effect on Perinatal Mortality and Caesarean

Section Rates and Its Complication.- American Journal of Obstetrics and Gynecology 122:

750-754. 1975.

(131) Haverkanip. A., M. Orleano. et ad. **A Controlled Trial of the Differential Effects of Intrapartum

Fetal Monitoring.** American Journal orObstetrics and Gynecology.

(132) Schwarcz. R.. O. Althabe. R. Belitzky. "Fetal Heart Rate Patterns in Labors With Intact and With

Reputured Membranes.- Journal of Perinatal Medicine 1: 153-165. 1973.

(133) Banta. H. David. and Stephen B. Thacker. Costs and Benefits of Electronic Fetal Monitoring: A

Review of the Literature. 011ice of Technology Assessment. Congress of the United States.

Washington. D.C.. 1979. (134) Schifrin. Barry S. "Fetal Heart Rate Monitoring During Labor.- Journal of the American Medical

Association 222(2), October 9. 1972.

( 135) Patric. Eva and Bertil Larsson. -Caesarean Section-A Clinical Study with Special Reference to the

Increasing Section Rate. Acta Obstetricia et Gynecologic: Scandinavica 57: 245-248. 1978.-

(136) New:re. R. R.. S. E. Fienberg. S. Greenland. and E. A. riedrnan. "Effect of Fetal Monitoring on

Neonatal Death RIIItCS:. The New England Journal of Medicine 299(7). August 17. 1978.

(137) Paul. Richard H.. James R. Huey. and Carl F. Yaeger. "Clinical Fetal Monitoring-Its Effect on

Cesarean Section Rate and Perinatal Mortality: Five-Year Trends.- Postgraduate Medicine 61.

April 1977. (138) Beard. R.W. "The Detection of Fetal Asphyxia in Labor.- Pediatrics 53(2), February 1974.

(139) Department of Health. Education. and Welfare. Public Health Service. National Institutes of

Health. -Antenatal Diagnosis.- A Consensus Development Conference sponsored by the National

Institute of Child Health and Human Development. Masur Auditorium. March 5. 6. 7. 1979.

BIBLIOGRAPHY

Sources for the Needed Health Services section

The American College of Obstetricians and Gynecologists. Standards for Ambulatory (Th c 1 nen] Care.

1977.

The American College of Obstetricians and Gynecologists. Standards for Obstetric-Gynecologic Services.

1974.

The American Academy of Pediatrics. Standards and Recommendations for Hospital Care of Newborn

Infants. 1977.

Prichard. J. A. and P. C. Macdonald. eds. Williams Obstetrics. 15th ed. New York: Appleton-CenturyCrofts. 1976.

Danforth. D. N.. ed. Obstetrics and Gynecology. Ord ed. New York: Harper & Row. 1977.

Schaffer. A. J. and M. E. Avery. eds. Diseases of the Newborn. 4th ed. Philadelphia: W.B. Saunders

Company. 1977.

Barnes. F. E. F.. ed. Ambulatory Maternal Health Care and FamilyPlanning Services. American Public

Health Association. 1978.

jib

242
THE HEALTH NEEDS

OF INFANTS

AND CHILDREN UNDER 12

by SUSAN S. ARONSON, M.D., F.A.A.P.*

INTRODUCTION

This background paper on infants and children summarizes what is known about health services needed by children in the United States from

infancy to adolescence. To some extent, the difficulty of the task was eased by the consensus existing among leaders in the child health field

regarding goals, health problems, and needed corrective actions. Healthy People: The Surgeon General's Report on Health Promotion

and Disease Prevention, published in July 1979, brought together much of

the present thinking about priorities for child health services in the United States and emphasized the need for disease and injury prevention services. Further improvements in the health of the American people can and will be achieved not alone through increased medical care and

greater health expenditures but through a renewed national commit- ment to efforts designed to prevent disease and to promote health

(I). Children are considered an ideal target population for whom investments

in preventive health care will yield high returns.

Definition of Health Services Needed

by Children

For purposes of this paper, "health services needed by children" are broadly defined as (1) the traditional personal health services such as health assessments, immunizations, and diagnostic and treatment services

for illness; (2) supportive and health-promoting services for individuals or families, such as homemaker services, home health care, child care and

The Medical College of Pennsylvania and Hahncinann Medical College, Philadelphia, Pennsylvania.

243
school feeding programs, fitness programs, health education and counseling, outreach, and advocacy to promote access and appropriate use of health services; and (3) preventive services with communitywide impact, such as fluoridation of water, improved safety of playgrounds and

buildings, and communitywide health planning. A service is said to be "needed" if its absence is believed to put a

significant number of individuals at risk of suffering serious adverse

consequences. This "risk approach" can be used to formulate rational and

measurable child health objectives, even when resources are limited (2). It addresses needs of the entire population, as well as those of vulnerable

subgroups.

Risk Measurement and Reduction'

Risks can be measured systematically and objectively by examining the probability of specified outcomes, but the acceptability of a risk is based

on personal and social values (3). Decisions about the acceptability of risk

are very fragile and subject to clashes of conflicting values. In the past, children have been knowingly exposed to life- or health-threatening risks because society has placed a higher value on personal liberty or costs than on the welfare of children. For example, opposition to seatbelts on school buses is based on the installation cost and inconvenience of use despite

their established safety benefit. Health risks are assessed using a variety of measures of health status. One technique is based on measurement of five adverse outcomes: death, disease, disability, discomfort, and dissatisfaction (4). Another measures a child's health status on a continuum of outcomes ranging from the positive to the negative: longevity, absence of disease, activity, satisfaction, comfort, resilience, and achievement (5). Resilience and achievement are particularly useful parameters because they relate to the child's potential for future development.

Freedom of Choice hi Use

of Health Services

A considerable degree of choice exists in the use of preventive health

services; but one individual's freedom of choice often has an impact on

other individuals_ For example, all members of a health insurance plan must pay for medical care expenses incurred because some of the insured

chose not to use their statbelts, not to install smoke detectors in their homes, or not to obtain appropriate immunizations. People with dental insurance share the cost of a community's decision not to fluoridate

community drinking water or sort of the insured not taking fluoride

supplements. Society's right to i-Alluence choices made for children is

'For a list of known risks to child health. see Appendix.

244
frequently justified on the wounds that: ( I) the child is unable to exercise

self-determination and (2)--actions taken by others (usually adults) may cause a child's injury or illness, with consequent demands for medical services, the cost of which may be borne by the public for many years.

Access to Health Service

Many deterrents to the use of health services exist. For some people, life

is so crisis oriented that preventive care is perceived as irrelevant. Barriers

in the health care system include health care facilities with inconvenient

locations or hours (causing loss of work and pay), long waits for service. and insensitivity to personal needs. Despite their greater need for health

services, the poor often confront more barriers and receive less competent health care than those of greater means. Services for the poor are often

provided in separate facilities and by different providers than those for the more affluent_ Separate is rarely equal.

Clinical Efficacy

Health services that do not reduce or eliminate risk are not efficacious.

However, benefits of a service may be difficult to measure. For children, it may take a lifetime to collect the necessary data to determine benefits. In the following sections, this paper lists and discusses children's health

services that have been determined or are generally believed to be

effective in the reduction of significant health risks. No attempt has been made to set priorities among them, although the reader may infer some priorities based on numbers of children affected and severity a risks

involved.

Socioeconomic Factors and Health

Income is probably the single most important factor correlated with

health risk. Being poor means living in poor housing with erratic heating, broken or inadequate plumbing, and vermin. It means little food, food of poor quality, dirt, noise, stress, and chaos. Children in poor families, and especially children in poor families with only one parent, are in poorer health and are more likely to

have limitations than children in higher income families. Medical care alone cannot solve all of the problems, but immunization, glasses for children who are unable to see the front of the room in school, the filling of decayed teeth, and prompt diagnosis and

treatment of minor problems to prevent debilitating complications could certainly help reduce problems among children in poor

families (6).

245

2 .7 %Apr%
Ethnic and Cultural Considerations

Cultural characteristics are also determinants of need for health

services. Families from different cultural backgrounds have different

perceptions of health and sickness, and of needed and acceptable health

services. Until 1979, the Amish community in Pennsylvania would not

accept immunization. When a polio outbreak occurred, the resistance to

immunization diminished.2

Specific health care needs are also identified with certain groups. For

instance, an increased incidence of anemia and low height-for-age have

been found among the Mexican-American population (7). Newly arriving

Indochinese refugees are expected to have special problems with tuberculosis and parasitic diseases (8). These refugees are being settled in many

States, and their needs require special attention.

Although these cultural subgroups may not be present in sufficient

numbers to have a significant impact on health service needs in many

States, local health services in "melting pot" States like California must be

modified if they are to meet the needs ofsuch groups.

DEMOGRAPHIC PROFILE OF CHILDREN

IN THE UNITED STATES3

Numbers, Race, and Geographic Distribution

In 1978, 39 million children (approximately 18 percent of the total

population) were under age 12 in the United States (table 1). Of these. 8

percent were infants under age 1. About 83 percent of the children were

listed as white. 15 percent were listed as black.. and 2 percent were listed as

of other racial backgrounds. As shown in table 2, in 1975-1976, 52 percent of the black children lived

in the South, while 54 percent of the children of other minority groups

lived in the West. Well over half (68 percent) of all children lived in

Standard Metropolitan Statistical Areas (SMSA's) in the mid-1970's, and

more than one quarter (29 percent) were inside central cities (table 3).

Although 67 percent of white children and 75 percent of black children

were in SMSA's. white children were much more likely to live in suburbs

or noncentral city areas (43 percent). The majority of black children (56

percent) live in central cities. The children of other races are also highly

concentrated in SMSA's (84 percent), although only 39 percent reside in

central cities. Children who live in non-SMSA areas are almost exclusively

nonfarm residents; whites comprise the largest percentage living on

farmsa mere 3 percent.

2Gens. R. Personal communication: Pennsylvania Department of Health. September 1979.

This section was prepared by Mazy Grace Kovar and Denise J. Many.

246
OZOI1 16Z et1 Ct1 090Z 00011 :v MU S111 09 1.09111 LC61 'S RI tog 

112 691 Z 9Z1 19616 6/9't 9911 061', 966'C 63I1 

Ut 09t 991 L1 LL tgt *t91 1E6 ti I* 090V CtIC 9961 

tC6 Ut Z9r SI 99 Z8 ?-1 911V 9Z1V 696"Z C10V 6991 9WZ 

ofal sr at a Z9 Zr Or ami AC We fal oft LSE' 

Litt s'91 Ogg r961 ne'z as tit 0 NV Net SIM COOVZ 81V61 

Pi MI WI Ilk SINI SIPA Irk MIN Noi 1011 MMN WIN lit 

ff AIM 10111 

re 3 lows 04 Kim* *I los Pa *au Pion tam sai saquv4 Comas 
Al nice, 22.1 26.4 33.2 18.2

White 22.7 27.7 30.2 12.5 Black 19.5 21.1 51.8 7.6

AN other 18.3 11.6 18.3 53.7

SOURCE Unpublished data from Health Interview Survey. National Canter for Health Statistics. Public Health Service.

Family Structure

At mid-decade, more than three-quarters of American children lived with both biological parents, while 15 percent lived with their mother only. Eighty-three percent of the white children lived with both parents, while

less than 50 percent of the black children did so. For the children of other

races, this figure was 80 percent. For the total of all children, 12 percent of white children, 34 percent of black children, and 14 percent of the children

belonging to other races lived with the mother only (table 4).

Utilization of Health Services

Children in low-income families, black zhildren, children in central cities or outside metropolitan areas, and children living in the South or

West are less likely than others to have a regitlar source of health care.

Black children, children in low-income families, and children in central cities are much more likely than others to rely on institutions for their

Ca/C.

On average, among children with at least one contact per year with a

doctor (including visits and telephone consultations) those under age 6 have about 6.4 contacts per year: elementary school age children have

TABLE 3. Penned et Children In and Outside illehopoliten Area= United etaters, 1976

9111111A1 Outside IRMA

*Arida

Central Central

Have TotW CRy ci Meld Monter= Farm

AN races 68.2 28.6 39.6 31.8 29.1 2.7

White 66.7 23.4 43.3 33.3 30.3 3.0

Black 74.5 55.8 18.7 25.5 24.0 1.E

AN other 84.3 39.1 45.2 15.7 13.4 2.3

Standard Metropolitan Statistical Area.

SOURCE Unpublished Pie h

data from Health interview Survey. Nations! Center for hisellh Statistics. Healt Service.

248 9
TMIIJE 4. Selected Deem alt Chareolisekdise of Children Yoder Age 12 by Sheen UMW Sin. 1975-10711

Clieraeladelke AS While Slack

Mee

awes

income 15,000 12.8 9.4 31.3 14.5

income 815.000 plus 32.7 36.1 13.4 38.8

Education of heed. 8 years or IS 14.8 12.9 25.2 16.9

Education at head, collage grad 16.8 18.8 4.4 32.9

Boer parents present 77.7 83.3 46.9 80.0

Mother only 15.2 11.8 33.8 13.8 No parent heed 6.6 4.4 18.8 5.5

SOURCE: Unpublished data from Health 'nterview Sunny, National Center Igor Health Slallebes, Public Flesah Softies

about 3.3 contacts per year. Only rarely does a preschool-age child have no medical contact during a year. More than 90 percent of the preschool children had a usual source of

care, as reported in a survey of their parents; 80 percent had a private doctor, just over half (54 percent) of whom were pedia. t--icians. Hospital outpatient departments were. the regular sources of care for about 6

percent of the children, and other clinics or places for about 4 percent Three out of every four young children had received ambulatory care

from a private doctor during the year. Approximately half of these

received all their are from private doctors ani one-quarter had received

all their care from hospital outpatient departments, emergency rooms, or clinics. The remaining 8 percent received all of their care in institutional settings. The most common diagnosis aux.:mg young children was a respiratory

problem. Ear conditions were next most common, followed by infections and parasitic diseases. These three categories accounted for 67 percent of

infants' visits and 72 percent of visits by children ages 1-5 during which a

diagnosis was made. Elementary school age children (6-11 years), although somewhat less

likely than the younger children to have a regular source of care, were

equally likely to have a private doctor. In this case, however, the doctor was more likely to be a general or family practitioner than a pediatrician. Like the younger children, the elementary school age children who had a

regular source of care but not a private physician were more likely to rely

on hospitals than freestanding clinics for their care. Approximately 58 percent of the 6-11-year-olds had received ambulato- ry care from a private doctor during the year 45 percent had received care only from a private doctor and the other 13 percent from institutional facilities as well. About 6 percent received all their care in institutional settings. The elementary school age children are even less likely than younger children to visit a doctor unless they are ill or injured. Only 18 percent of

249
all their visits were reported by physicians to be for examination or

observation.

Respiratory and ear conditions, although still important, accounted for

a smaller proportion of visits to the doctor for children ages 6-11. External

causes, such as fractures and lacerations, and skin conditions accounted

for a higher proportion of the visits (table 5). About 17 percent of all medical contacts reported for children under

age 18, but 23 percent of the contacts for children under age 1 were

telephone contacts. However, in families with incomes under $5,000 only

11 percent of the contacts were telephone ,zontacts, ir contrast with 20

percent in families with incomes of $15,060 or more, for whom private

phye;:ians were more likely to be the source of care.

Projected Population Estimates and Trends for the United States Population Ages 0 to 11

The future size of the U.S. population under age 12 will be determined

almost solely by the number of births that occur, because mortality and

migration have little effect on this young population group. In the first

population projections shown in table 6, the number of children under

age 12 will increase, while in the third, a decline will occur. However, the

likelihood that the Series III projection will actually happen is slim. Young

women today expect to have about 2.1 children-considerably higher than

the 1.7 assumed in the Series III projection. As table 6 illustrates, the

population under ryge 12 in 1978 had already surpassed the projections

made for 1980 unc 1. Series II and III. If the recent rise in the U_S. birth

TABLE 5. Office Visits to Physicians in Private Practice by Age of Child and Principal Diagnosis: United Stales, 1975-73

Under 6 Years

Purpose of Visit Total Under 1 1-5 6-11

Years

All visits 100.0 100.0 100.0 100.0

Examination or observation 32.4 49.4 24.4 18.0

Illness or injury 64.6 482 72.4 78.4

Total 100.0 100.0 100.0 100.0

Respiratory 44.3 41.5 45.0 36.7

(AUR) (28.3) (27.8) (28.3) (19.9)

Ear 15.6 12.2 16.7 10.3

Infectious and

parasitic 11.0 13.7 10.0 10.7

External causes 7.1 3.9 8.0 12.1

Skin conditions 6.8 2.1 6.4 9.4

III-defined 3.0 2.4 3.2 3.6

SOURCE: Unpublished data from National AmbulatorzerviMectical Care Survey. National Center for Health Statistics. Public Health

250
TABLE 9. Pcolellon Mobs rand .11 for to US. Pophtlan Ag1d 041: 19701 1978, 1$80, 19901 and 2930

(We In Ihoonds)

Ai Ago %Ns Bid Mho Ram

Sala Sods Soft Sado Soda Sala Sala Sala kW Sods Sets SIM

Yor I U SI I A Ill I 0 III I II 01

1910' - 45,519 - - 38,458 - - 6,329 - - 133

1978' 39,275 - - 31,417 - - 5,912 - 941 - -

19802 41,153 39,246 37,819 33,880 32,312 31,138 6,125 5,856 5,692

19902 56,033 45,534 38,147 46,920 37,762 31,973 7,552 6,366 5,525

20002 58,276 44,912 36,337 48,293 36,983 29,823 7,982 6,225 5,051

1,047

1,566

2,004

1,017

1,406

1,703

I 1,249

1,463

1U.S. Burma of the Caws. Gent PopttIon Reg& Series P45, ht. 800. Estimates cd the Population of the U.S. by Age, Su and Race: 1916.1978, Table 2.

WaginOon, N.: U.S. Govenment Prindog Mot

11.1.S. Bow d the Wits. Cured Pcctlitix Repot Skis P45, P. 704. Projections of the Population of the U.S.: 1977-2050, Tables 1-9. Washington, D.C.: U.S.

Goverment Pdriting Ofb.

SOURCE; U.S. Bureau of to Conn Ovate of Poputtion, 1970, U.S Summary, General Population Characteristics, PC(1) 81, Washington D.C.: U.S. Government

Rinttg0111ce,1912.
rate is more than just a brief phenomenon, the population under age 12 will continue to grow both absolutely and relative to the total U.S. population.

CHARACTERISTICS OF THE POPULATION AND DETERMINANTS OF HEALTH

Common Patterns of Biological and Social Development of Children

7.Ae. drive to grow, to develop, and to mature is inherent in every child. Children at any given age are at various stages of development within an expected range. There are well documented patterns of growth and

development for body tissues, organs and their f....actionsincluding

renal, lymphoid, dental, gonadal, motor, language, and visual develop- ment (9). For example, the visual acuity of the average 4-month-old is around 20/200, of the average 2-year-old, 20/40 to 20/50. Twenty-twenty vision may not be achieved until age 6 or 7. For a 3-year-old with 20/50 vision, sequential observations are required to determine if this is a less mature, but normally developing child, or one with a potentially

permanent deficit. Because child health status is .nterpreted against a background of varying patterns of development, sequential observations are very important in the assessment of children. Developmentally, children are conveniently grouped as follows: newborns and infants (under 1 year of age), toddlers (1-2 1/2 years of age),

preschoolers (3 or 4 years of age), lower elementary school age children

(5-8 years of age), and upper elementary school age children (9-12 years of age).

Infante and Toddlers

For children under 1 year of age, congenital anomalies and the

secondary effects of such anomalies are the leading causes of death

accounting for 8,420 deaths in 1977. The second leading cause of infant mortality is the Sudden Infant Death Syndrome (SIDS), which accounted

for 4.751 deaths, followed by immaturity which accounted for 3,714 deaths in the same year. Mortality rates per 100,000 live births were 1,412.1 from all causes, 253.1 from congenital anomalies, 142.8 from

SIDS, and 111.6 from immaturity Although infectious diseases are no longer the major cause of infant deaths, they remain the leading cause of restricted activity for children under age 6 (10). Although infants are born with some protective

4/Health status indicators and health service needs for newborns are included in *A Beginning.*

in this volume.

5Tbese figures were supplied by the National Center for Health Statistics. Division of Vital Statistics.

U.S. Public Health Service. DHHS.

252
antibodies received from their mothers, these maternal antibodies gradually disappear during the first year of life_ From birth onward, children

build their own supply of antibodies either in response to infections or

through irnmitni7n.tion. By age 3 a child's antibody levels are nearly equal to those of an adult. Lower antibody levels during the first 2 years of life make this a natural period of vulnerability to infection. In young children, risk of infection also is increased because distances are short

between those places where infectious organisms normally reside innocu- ously (such as in the nose and mouth) and areas where they can cause

significant illness (such as in the middle ear or respiratory tract). Thus both low antibody levels and anatomic features make young children

particularly vulnerable to infections. Whereas small size and immaturity make the very young child

vulnerable to illness, rapid growth counters that risk with reGilienc, and

capacity for repair. (If growth is hindered by illness, improper feeding, or

deprivation, some catch-up growth and development usually occurs when

those adverse circumstances cease.) However, there seem to be critical periods when favorable or adverse conditions can have a long-lasting

impact_ Dramatic changes occur during the first year of life; body weight more than triples, and the infant progresses from total dependence to becoming

independently mobile and responsive to verbal messages. Infants become

toddlers when they begin to walk. With increasing independence come the "terrible two's." when children test their skills and develop a sense of

themselves as individuals_ With abundant energy, they expose themselves

to risks, but are unaware of danger. (For this reasoii, end because of low

rates of death from other causes, injuries are the leading cause of death in

this age group.) While building resistance to infectious disease through exposure to

organisms in the environment, toddlers experience many minor illnesses. which, if not appropriately managed, can result in permanent impair- ments. Although it is not possible to protect toddlers from all adverse

conditions, r;!..-:.-3y access to preventive health services and good medical care can reduce the risk of long-term impairment_

Prischoolers

Preschoolers can dress and feed themselves and use the toilet. They al

more tractable than toddlers and better able to listen to reason and advice.

Role playir g, exuberance, vivid imaginations, and unreasonable fears are charactcristic. Although children in this age group have a lengthening

attention span and enjoy group play, their interest is rarely sustained for

longer than 20 of 30 minutes. For preschoolers, as for all children over age 1, injuries are the most frequent cause of death, and infections the most common cause of restricted activity. In descending order of incidence, the most common causes of fatal injuries are motor vehicle injuries, burns, drowning, choking, fails, and poisoning (II). Among children 1-5 years of age, 3,439 died from injuries in 1976-1.291 from motor vehicle injuries and 680

253

a L
from burns. The lifetime magnitude of the traffic safety problem is

staggering: "One in 60 infants born today will some day die in a traffic

accident, and two out of three will be injured."6

In addition to immunologic and anatomic features tnat make young

children prone to infection, their behavior increases their exposure to

infectious agents. They play in dirt, sand, and other unhygienic places and

get bumped., bruised, scraped, and injured frequently. They touch objects

contaminated with disease agents and in turn contaminate themselves,

other children, or other objects with theira. hands.

Under the influence of caregivers, NOung children develop lifetime

attitudes about their bodies which are related to their capacity to adapt

successfully to the stress of illness, trauma, and physical changes (12).

Preschoolers are close observers and imitators of adult behavior. Desirable

and undesirable behaviors are copied with ekiLial zeal.

The rate of physical change slows progressively from the second to the

fifth years, but the expansion of verbal, intellectual, and motor skills:

emotional and behavioral expression; and independence take place more

rapidly in the first 5 years of life than in any other period. During these

years the influences that affect the development of certain human

characteristics may have their greatest impact (13).

Lower Elementary School Age Childr.r.

The range of developmental differences among children entering school

is narrower than among preschoolers, but there remain differences in

maturity. Children who vary sign;ficantly from the norm need the joint

and coordinated services of health and education professionals to

determine appropriate goals and plan support services to help these

children maintain progress.

School-age children are away from home for considerable periods, are

exposed to a wide range of influences, and establish peer group identities.

Children ages 6, 7, and 8 are eager to develop intellectual tools and to

explore the world.

These cognitive changes are reflected in children's changing concepts of

health. In one study, only 25 percent of a sample of children 6 years of age

answered "yes" when asked whether it is possible to be partly healthy and

partly unhealthy at the same time (14). A positive response to this

question was given by 74 percent of children 9 years of age and by 84

percent of 12-year-olds. In the same study, mental health was considered a

part of health by only 2 percent of those 6 years of age, by 15 percent of

those 9 years of age, and by 32 percent of those 12 years of age.

Upper Elementary School Age Children

During ages 9-11, the naivete and gullibility of children 6-8 years of age

give way to more critical self-direction. Physically, the child growsslowly

until the onset of adolescence. Awareness of differences among members

6Claybrooic. J. Remarks before the National Conference on Child Passenger Protection. Preset, ted in

Washington. D.C December 10. 1979.

254
of the peer group and a quest for status within the group begin to emerge. Upper elementary school age children live in an expanding world and can

visit friends some dist=nce away on their own- They faprrn teams in sports and work persistently tc.-. develop physical skills. These characteristics may

explain the high incidence of death and injuries asscpcia.ted with motor vehicle travel, water activities, bicycles, sports equipment, and play- grounds, while deaths from other causes remain low. Although they are less dependent than formerly, upper elementary

school age children are readily influenced by authority figures, such as

school principals. The granting of privileges and permission. still -2_1orninate adult-child relationships. Toward the end of this period, children become aware of being "grown up" and try to behave so that others will consider

them. mature.

This period -ends at adolescencewhich begins at different ages for different children. Often behavioral changes associated with puberty

precede recognizable physical changes. For some girls, adolescent changes begin as early as 9 or 10 years of age. For boys adolescent changes usually

do not begin until 12 or 13.

Some Additional Determinants of

Child Health Service Needs

Family Dynamics

Very little scientific data is available about the assets and liabilities of

the various contemporary family systems, but some family arrangements

result in a heavy burden for one parent. Primary responsibility for child

rearing, including child health, is usually combined with other roles for mothers in single-parent families and in two-parent families where both

parents are employed. Recent studies of dual-career families consistently demonstrate that home responsibility still rests much more on women

than on men (15). By 1990, 45 percent of children under age 6 are projected to have mothers in the labor force (16). Soinse of the effects of

increased maternal employment on child care are xaitigated by the declining birth rate, which results in fewer children per family_ At the

same time, children in today's smaller families have few= opportunities to

observe and learn about child care for their future role as parents.

Contemporary Socioeconomic Dynamics and Health

Because life in contemporary society requires complex skills, the

standards for social competence have risen substantially during the past century. Hence, mental retardation and learning disabilities, including dyslexia, have become more problematic (17). Techniques for the management of both subtle and overt forms of developmental disability

are under investigation, and some services are now available to address

these problems. Stress is correlated with illnesses such as hypertension, heart disease, ulcers, -.:..sceptibility to infectious disease, and emotional illness (1, 18).

255
The relationship between stress and illness is zwo-waystres may

precede illness, but illness can also produce stress (19). In many ways,

children are windows on family functioning. Their problems often reflect

family stress and needs that would otherwise remain hidden behind walls

of privacy and endurance. Often, when parents find help for their children, the whole family benefits from linkage to support systems. Income is probably the single most important factor correlated with

health risk, and low income is the single greatest barrier to health care.

Not only are psychosocial and psychosomatic problems present in greater abundance among the poor, but the poor also are less likely to have these

problems addressed by medical care (20)- To live in urban poverty means to be overcrowded, to live in two or

three rooms with seven, eight. ten other people. A ghetto child

seldom has a bed to himself, let alone a room of his own. (Poor

children are) not only inadequately, but badly fed, for the most

part_ They drink coke more often than milk, eat candy and potato

chips oftener than meat and vegetables. Their meals are irregular_ They go to school without breakfast, eat where and what they can

during the day Slum children are made numb by overstimulation

(sounds. smells, skin contacts, fighting) (21). Whereas it is estimated that psychosocial problems are present in about

15 perc-mt of all children, 25-50 percent of children whose care is paid for

by medical assistance programs have had such problems diagnosed by

physicians (20). Pour children suffer disability more frequently and are

more su-ceptible to long-lasting handicaps than are more affluent children_ The frequency with which poor children are hospitalized is only

slightly higher than that of more affluent children, but their length of stay when hospitalized is longer. Further, poor children are less likely to have

preventive care.

Subgroups with Special Needs

Foster Children

In 1977 approximately 504,000 American children lived in foster care;

395,000 of these were with foster famil'es, and the remainder were in

institutions or group homes (22). More than one-fifth of foster children

have been living away from their families for more than 6 years. Separation began for nearly half of them when they were less than 6-yearsold_ Often when children are placed in foster care, previous health service

relationshir- are broken. As a result, health services for foster children are

often frt,...cnted among many sources of care with poor recordkeeping

and incomplete care_ Long distances between parents and children may

make visiting difficult, and counseling of natural and foster parents is

sometimes assigned to workers from different agencies. The cost of foster care is double that of good quality day care, which would support continuity of family relationships and health care. Because its preventive

potential is so great, day care was recommended as an essential service by

the Joint Commission on Mental Health in 1969 (23). Yet in 1980, day

care remains scarce largely because of underfunding.

256
Handicapped Children

For a discussion of the needs of handicapped and chronically ill children, see "Health Care for Chronically Disabled Children and Their Families," in this volume_

Attitodinsd Foams

Consumer expectations are closely related to experience, per zeived

needs, and satisfaction with health care services. In a study conducted

among middle class users of the University of Nebraska Family Health Centers, patients expected a hip degree of benefit from checkups, laboratory services, and some screening tests. On the other hand, counseling and health education were not perceived to be necessary

components of health care services(24). In a survey of mothers of 1,464 children enrolled in the first, second, and third grades of the Galveston, Tex., public schools, almost all the mothers rated screening tests to detect defects of tuber-zulosis, hearing, and vision as very important (25). Most considered irnm.unization for

measles, poliomyelitis, diphtheria, pertussis (whooping cough), and teta- nus, as well as health education about sex, tobacco, and drugs very

important In this citywhere public health services are of high quality

and accessiblemore mothers preferred a change from a private health

source to a public health source than wished the opposite change. A

significantly greater proportion of better-educated mothers from higher socioeconomic levels preferred to share the responsibility for health

education with the schools.

In a 1979 study of the attitudes of family members toward health and

health care, numerous interesting findings came to light (26). Product safety was overwhelmingly viewed as a Government responsibility. Single-parent families reported economizing more on health-relat- ed items than two-parent families. The greatest economizing being attempted was on the quality of

food purchased and on having dental work done. A large majority of respondents indicated that health checkups cost too much for the average family's budget. Although most respondents felt parents should have the main

responsibility for teaching children good health and nutrition

habits, parents said that they did not feel they were models of good health behavior for their children. Among the changes these parents desire in themselves are stopping smoking, exercising

regularly, staying calm, losing weight, cutting back on sweets, and

eating more balanced diets. Forty percent responded that the Government rather than the

individual is responsible to see that all Americans have good

health care whether they can afford it or not. Heading the list of information most wanted were, "v/here to go

for help when needed" and "how to teach children better health

and eating habits."

257
Variations in Access to Service

Children's access to institutional services and the coordination of these

services varies greatly from one place to another. For example, the school health service program of Galveston, Tex.. has had a far-reaching and

favorable impact on health service delivery in that community, whereas

the school health system in Philadelphia has been continuously reduced by budgetary cutbacks. Children of parents whose employers offer health maintenance organization coverage in their benefit packages have preventive health services readily available to them, but children of

parents who work part-time- for the same employer often are not eligible

for this coverage. Military dependents may receive highly fragmented

services ---- services from. military health facilities are often combined with

more convenient but more costly private health se. ,ices.

Preventive Interventions in Child Health

Disease prevention includes primary prevention (preventing the disease or injury from occurring). secondary prevention (detecting the disease

early enough for successful treatment), and tertiary prevention (mitigating

the effects of the disease). Among experienced child health and social

policy planners, it is agreed that measures to address the health services

needs of children should reach beyond traditional health services for sick

children and include preventive measures at the individual, family, and

community level. Examples of areas where preventive measures can be

expected to have high yield include (I) nutrition, (2) fluoridation of

drinking water, (3) immunization, (4) modification of the physical

environment. (5) health education, (6) modification of health behavior,

and (7) mental illness prevention.

Nutrition

Malnutrition in infancy and early childhood has profound effects on

mental and physical growth. Not only can malnutrition result in increased

susceptibility to infection but it also causes changes in gastrointestinal and

endocrine function that result in apathy, loss of energy, and failure to

develop physically and intellectually (27). Food programs for infants and

children are primary measures to prevent malnutrition, and screening for

nutritional disorders and their correction is a secoracInry measure.

Fluori,tition

Fluoridation of community water supplies or daily use of fluoride

supplements for children until all permanent teeth are fully developed can

reduce tooth decay in school-age children by as much as 65 percent,

decrease the loss of first permanent molars among children 12-14 years of

age by 75 percent, and increase sixfold the number of caries-free children

258
12-14 years of age (28, 29). At no other time of life is this preventive potential available.

haminkization

Because they lack immunologic experiencewhich may be gained at the cost of serious, or even fatal, illnessinfants and children require

immunization against infectious diseases. The well-publicized cost effectiveness of the measles vaccine program and the past success of national inununization programs are stellar achievements in primary prevention

(30, 3.1).

Modification of Physical Environment

Child passenger deaths and injuries in motor vehicle crashes could be

reduced by as much as 60 percent through the use of appropriate infant and child restraints (32). Other effective methods of protecting children

from injury include installing smoke detectors in homes, reducing the

temperature of household hot water, installing impact-absorbing surfaces on playgrounds, and using childproof tops on containers for medicine and

other toxic substances.

Health Education

Despite the malleability of young children and their willingness to learn, and despite the importance of establishing patterns that may have a lifelong impact on health, health education has had only limited

effectivenessperhaps because parents' reported perceptions that they are poor role models for healthful behavior are correct However, evaluation

of attempts to introduce an innovative school health curriculum, designed by the Seattle and Berkeley School Districts with the support of the Bureau of Health Education, indicate that behavioral changes can be

achieved (33).

Modrdication of Health Behavior

Modification of health behavior seems to be more effective than

counseling and information dissemination for the promotion of longlasting changes (34). By using behavior modification techniques, undesir- able behaviors can be reduced while desirable behaviors are increased.

"Self-control" can be reinforced with appropriate stimuli based on the expectations of children at certain developmental stages. The child

thereby becomes an active participant in shaping the desired behavior. For example, toddlers who are eager to demonstrate their ability to be

independent can be taught to wash their hands before eating and to use car restraints on their own; preschoolers can participate in nutritious menu planning and shopping; and school age children can benefit from

training correlated with measured progress in physical fitness programs in

259
the same way that their progress in cognitive skills is encouraged in the

school environment.

Mental Illness Prevention

In 1979, The President's Commission on Mental Health recommended

a number of important measures for preventing mental illness, including

the recognition and strengthening of both the natural informal and formal networks to which people belong and upon which they depend (22). Many community networks revolve around the care of childrenincluding

health care programs, day care centers, schools, recreation and religious education programs. These programs offer ideal opportunities for the

identification of children and families who need special services, and such programs may also be the most appropriate settings for the delivery of mental health services.

NEEDED HEALTH SERVICES FOR CHILDREN

Services Needed by All Children"'

Services for Individual Children

Identification of Cone's:dons Associated with Sudden Infant Death

Sudden Infant Death Syndrome (SIDS) claims the lives of between

6,000 and 7.000 infants per year. usually between the second and fourth months of life (35). Although no single cause has been shown to be

responsible for these deaths, a promising measure is the use of apnea monitoring devices for infants considered to be at risk. Although the

routine use of such devices remains controversial, careful observation of neonates to identify those who go unusually long periods without breathing (apnea), or who have abnormalities of muscle tone and other neurologic abnormalities may be helpful in reducing the death rate from

SIDS (36, 37). SIDS is also associated with failure to gain weight, certain metabolic factors, and mothers who smoke (37). Subsequent sibling of SIDS babies run increased risk from the syndrome, making this group and

all near-miss cases of SIDS targets for intervention through monitoring

programs (38).

Management of Illness

Treatment for injuries, common infectious diseases, and for diseases detected by routine health examinations is needed. Although the need for

treatment services is rarely disputed, their availability is still not universal. Efforts to detect disease are wasted if treatment for the conditions is not

provided..

iServices for pregnant women and newborns are discussed in -A Childs Beginning; in this volume.

260
Health History

About 90 percent of health problems are revealed by a comprehensive and regularly updated health history. developed from a health profession- al's interview with the patient and the patient's parents. Guidelines and questions have been developed for eliciting such health and nutrition history information (39-41). Because facts become blurred or forgotten with time, parents need to be encouraged to keep a list of key health data for their children so that the child's health history can be effectively used to provide good care.

Measurements and Physical Growth

Because variation from the normal growth pattern is often an early sign of a serious physical problemespecially in a rapidly growing infant measurements of height and weight (for children of all ages) and of head circumference (for children at least up to age 2) should be taken and compared with data on healthy children. Recently the World Health Organization recommended that height-for-age and weight-for-height be used as primary indicators of nutritional status among children (42). A

survey of preschool children in the United States in the late 1960's showed

that body measurements correlated well with measures of nutritional status (43). The Ten State Nutrition Survey showed that height, weight, and other body measurements are useful in identifying children suffering from nutritionally induced growth problems (44). Although malnourished children are not limited to low socioeconomic groups, they are most likely to be found there. A 1970 study of poor, black preschool children in Memphis showed that half the children were below the 25th percentile for height and weight (45).

Screening. Fvflowup Diagnostic. and Treatment Procedures

Screening procedures for children should be low cost and easily performed to separate the population into those who possibly have a health problem and those who probably do not. To be cost effective, they

should detect an undesirable condition that is fairly widespread in the population or that is extremely costly to treat, and one for which effective

treatment is available. Following are examples of useful screening

programs.

Blood Pressure. Recent evidence suggests that children with blood

pressure measurements in the upper ranges of normal for their age group may be at risk for hype: tension and associated diseases as adults (46). However, improperly conducted routine screening in children may result in unnecessary and costly diagnostic studies, mislabeling at an early age, and inappropriate use of drug- whose long-term effects on E,-...)wth are unknown (47, 39, 44). Current:y it seems prudent to measure blood pressure concurrently with other growth measurements after 3 years of age. Treatment should be reserved for significant aberrations (48).

261
Anemia. Anemia in childrenwhich affects up to half of poor children in

some Head Start programsmay reduce resistance to infection, attention

span, motivation to learn, and overall intellectual performance, and cause

apathy and fatigue (49-51). The detection of anemia is simple and

inexpensivt. iron therapy usually results in correction of anemia with an

associated inc-ic-Ise in energy and resumption of developmental progress.

Screening, diagnosis, and treatment services for anemia are needed by the

end of the first 6 months, in the preschool period, and again before the

adolescent growth spurt, to ensure adequate iron stores for the developmental needs of these periods.

Vision. Between 5 and 6 percent of preschool children have one or more

vision defects. a prevalence that increases to 20-25 percent during school

age (52. 53). Because uncorrected visual deficits in the preschooler may

result in permanent loss of vision, vision screening needs to be early and

frequent. In view of the steady incrc tse in vision problems with age and

the correlation of vision with learning, vision screening should be performed at age :3 or 4 and every other year for school-age children. Followup diagnosis and correction are, of course, necessary at any age.

Hearing- Children with hearing impairments may suffer profound and

longlasting effects; they are often mislabeled slow learners or mentally

retarded. Despite variations in reported prevalence of from 3 to 20 percent

(up to 50 percent in "learning disabled" children) depending upon age and

screening method, hearing impairment is sufficiently common to warra Zt

screening of infants and children (54-56). After age 3 screening should be performed every year for the remainder of childhood (52). Because

medical, surgical, and educational methods can be effective in the

reduction of hearing impairments, hearing screening is a sound preventive

approach if followed by corrective care (57. 55).

Developmental and Behavioral. Over 17 percent of children have mental

retardation, seizure disorders, neuromotor disabilities, learning problems.

or emotional disturbances (53). Many of these disorders may be seriously

disabling Early detection permits the greatest benefit from treatment. For

preschool children several acceptable, re-liable, and easy to use screening

tests exist (58, 59). The detection and remedial treatment of language disorders in

preschool children is critical to prevent handicap in developing social relationships and cognitive learning skills. An estimated 1.5 million

children in the United States suffer some language failure (60). Most

preschool developmental screening procedures include language screening. It prudent to consider this both a needed health and an

educational service.

Health professionals generally acknowledge the need for early and

routine screening of development However, concerns about its potential

misuse as a diagnostic tool and as a culturally biased rating system have

been voiced. Despite these concerns, developmental assessment has a rich

potential when it is performed frequently during the first year of life, at no

less than 6-month intervals during the second and third years, and at least

262
once more in the preschool period. Developmental assessments should be performed by adequately trained personnel, and be coupled with appropriate diagnostic and therapeutic management_ Currently available developmental screening tools do not assess development effectively

beyond 5 years of age- For older children, school performance can be used to measure many aspects of personal. social. motor, and cognitive development_ Although there are no validated screening tools for behavior problems, the history-taking process often reveals them. In one study, 5 percent of children in the practices of nine pediatricians were found to have emotional, behavioral, or school problems (61). In one Health

Maintenance Organization. 8.9 percent of all visits of children resulted in identification and management of emotional problems (62).

Dental_ After age 3, nearly 100 percent of children will need dental services (63). Routine preventive dental services of proved effectiveness include once or twice yearly cleaning, evaluation for caries' risk factors, application of topical fluoride, and fluoride supplements for children not living in areas with fluoridated water (64, 28).

Scoliosis. Between 0.5 percent and 3 percent of American children have curvature of the spine (scoliosis) requiring medical or surgical manage- ment (65-67). Untreated scoliosis produces bony changes in the spine and rib cage and can impair cardiopulmonary function and compromise life expectancy (65). Screening children about to enter adolescence offers the greatest hope for successful intervention, because the best control of the curvature is obtained through the use of shoe adjustments, exercise or braces during the rapid growth period of adolescence (68).

Tuberculosis_ The need for frequent, routine, tuberculin testing has diminished as the number of new cases of tuberculosis among unexposed children has declined (69). Current screening recommendations may be revised to reduce the suggested frequency to once in infancy, once in the preschool period, and once in adolescence in populations where the prevalence of tuberculosis is low.9

The Organization of Screening Programs

Many approaches to organizing screening and prevention programs are used, and each screening procedure can be performed on the target population separately. For example, vision screening can be done for all fourth grade students, or immunizations could be given in the schools every year to all those who are due for them. This method is efficient and has the potential for reaching individuals missed by the health care system. But for any child to receive a complete range of screening and

preventive services, many such programs would be needed. Findings of

*The American Academy of Pediatrics recommends initial tuberculosis screening for all children at or before 15 months of age (at the time of or before measles immunization). and with annual or biennial

testing thereafter (70).

9Mortimer. E. A. Personal phone communication to S. Aronson. October 27. 1979.

263
disparate programs, unless integrated with other health records, would

result in missed diagnoses or unnecessary duplication of service. Without

careful followup, some children would go unsered because of absence

from school on the date of the screening. The most cost-eff ttctive approach

would probably be to deliver screening and preventive services by one

system, in one setting, for each child. This setting could be a school, a

comprehensive care clinic, a day care program, or a pediatrician's office.

Mechanisms tr, prevent gaps in service would still be required.

Physical Examination

A recent review of the content and effectiveness of health supervision

for children under 2 years of age has noted that physical examination after

the newborn period is a low-yield procedure (71). Less than half of congenital malformations are discovered in the newborn period, but the

majority of the remainder are detected by 6 months of age. Other health

problems are usually revealed by health history and are only corroborated

or defined by physical examination findings.

Immunization

The present degree of control of diphtheria, tetanus, pertussis, poliomyelitis, measles, rubella, and mumps undoubtedly is due to the success of

immunization (72. 30). As the National Immunization Initiative has so

clearly demonstrated, reduction of disease can be accomplished by a

combination of technical developments, public education, and motivation

of health personnel (73-75. 31) Vaccines against hemophilus influenzae.

mycoplasma pneumonia, gonorrhea, and syphilis are being developed, but

are not yet ready for use (30).

Health Education To Counter Risk Factors for Adult Disease

A number of risk factors, if present during childhood and youth, are

well known to predispose to adult disease. Among these are misnutrition

(obesity. and intake of excess salt, sugar, and fat, or inadequate fiber),

inadequate exercise, cigarette smoking. and substance abuse. One study

has indicated that as many as 40 percent of Am:ftrican school children

have one or more risk factors for arteriosclerosis (1).

Well designed health education curricula used in a variety of settings

have achieved success in improved dental hygiene. control of obesity,

prevention and cessation of smoking, increased habitual use of seat

restraints, and control of alcohol consumption_ Most of these successful

programs include basic understanding of the human body, health risks,

and personal responsibility for making decisions that affect health. While

effective programs should be encouraged and expanded, further research

and development in this z.rea is greatly needed (34. 76-79).10

1°Reisinger. K. Personal comrnurncation, October 1979.

264
Services for Families

Anticipatory Guidance and Parenting Advice

Available data suggest that advice given during well-child visits can be effective (80). Studies that have compared the effectiveness of (a) physician advice alone, (b) use .phlets and other information

techniques alone, and (c) comb: 3.tor the two to promote the use of seatbelts and car seat restraint at that the physician's personal advice has the greatest positive et _ ,.tdies reveal that to be effective, health professionals should be warm and friendly, provide adequate explanations, and meet the patients' and parents' expectations and

concerns (71). The skillful child health professional reinforces the good

ideas of the parent and provides alternative strategies which the parent might find helpful.

Lay Support Systems

In contemporary society many groups are organized around shared

religious beliefs, ethnic identities, or common problems, many of them

health related. These groups serve an important function in providing

information about and access to available resources, making unmet needs known, =Lc helping to solve problems shared by the group members. Less organized social supports can be found in informal personal and

neighborhood networks. To some extent these groups offset the current absence of extended family supports, and health professionals need to

acknowledge and work more closely with them.

Strengthening the Capacity of Parents and Children To Act on Their Own Behalf

A need for wider dissemination of preventive health care and other

illness-management information to the general public does exist. Creative u.9.: of the ma--c5 entertairunent and news media; and of personal health

advocacy training in the - workplace, in schools, and in community

gathering places should be explored. Because programs aimed at develop- mei:A of healthy behavior patterns are more likely to succeed with young

chilch e- f wifil adults, greater efforts should be made to foster positive

self-di .,:alth behaviors early in life.. Some successful examples of siltch . ir.clude a program to develop nutritious eating behavior in press Sex:. -s, the use of school nursing services to develop healthful behavicx, aid a health decisionmaking education program sponsored by

the School Health Education Curriculum Project of the Center for Disease Control (81-83). More such efforts should be attempted and evaluated. The more parents understand about health care routines and schedules, the more they can assume responsibility for continuity of their children's health care. Provision of supportive documents and recordkeeping tools to

parents make it easier for them to assume this responsibility.

265
Day Care

Day care can provide access to medical, dental, and mental health

services for children and other family members; socia: and emotional

support that encourages family stability, helps prevent child abuse, shares

the child rearing burdens of parents, and fosters achievement among poor

children (84, 75). For these reasons, if day care services were universally

available, the health status of the Nation's children would improve.

Community Health Services

Emergency Services

Needed emergency services include effective emergency telephone

services, transportation, emergency and intensive hospital facilities, and

rap:a communication and coordination among all levels of service.

Children's emotional and medical care needs in emergecy situations

often differ from those required by adults. Emergency servic :s should be

planned to provide for these special needs of children.

Exercise Facilities and Programs

Resources and programs for physical activities are needed to gain the

mental and physical health benefits of exercise (I). An improved sense of

well-being, weight control, and reduced probability of heart attack are

associated with exercise. Exercise habits are learned principally in the

home and community during childhood. The more available and

commonplace such activities for children become, the more individuals

may be drawn to and persist in them throughout life.

Health Services Needed Only by Subgroups of Children

Major subgroups of children needing special services include the

following: the urban poor

the rural poor ethnic and racial minorities

children who are abused or neglected

children receivirg care away from homes

children and families where chronic disease affects some family

member children with severe acute illness or injury requiring hospitalbased services

Services Needed by the Urban Poor

The z - -ban poor need better ac:. to health services than they now

have. 't tiey require including supplementary services such as culturally

266
oriented advocacy, outreach translators, escorts, child care, and special screening programs for disor_lers such as lead poisoning and parasitic infections. Many poor people have no private transportation and, especially when ill, need transportation to and from health care appoint- ments, provided either directly or by vouchers issued by health facilities. Whenever possible, a variety of services needed by the poor should be coordinated at one location convenient to the patient. The health center can make arrangements with social service agencies and a variety' of health professionals to provide the commonly needed mix of services such

as child health care, laboratory and pharmacy services, social services, economic support, and food and nutrition programs to reduce stresses that affect health. Although current health care facilities usually are not

designed to provide such "one-stop" care, where such facilities do exist, they have produced dramatic improvements in health status (85).

Services Needed by the Rural Poor

Sanitation, Parasite Screening, and Toxic Agricultural Product Control

The rural poor lack basic sanitary facilities taken for granted in urban

settings; this necessitates routine screening for parasitic and other infections resulting from poor sanitation. Rural children are more vulnerable than adults to any long-term effects of residual agricultural pesticides and other toxic agricultural products and should therefore be

carefully protected from them.

Health Care Services

Rural families in general are medically underserved and unlikely to

have access to primary health care. Inadequate transportation and poorly distributed health services are serious problems i rural areas. Health

services for rural people at all socioeconorri, eels need to be upgraded

to a level comparable with that of urban areas. Mechanisms of payment also must be addressed, since a smaller proportion of the rural population have health insurance coverage than urban dwellers, and third-party

reimbursement rates are lower for those who are covered (86).

Set-vices Needed by Children of Migrant Workers

Children of migrant families need special attention in the health care delivery system_ These children receive fragmented services or no care at all. !ri one study 48.9 percent of migrant children were found to have

significant treatable illnesses (87). Because their parents are often unable

to bring them for care unless they have severe illness, preventive health

services frequently must be provided in day care or school settings, where health histories tend to be sparse or unavailable. In the absence of such

data_ thorough physical examination and laboratory tests take on greater

importance.

267
Services Needed by Ethnic and Racial Minorities

Special comprehensive health service programs are needed by children

from groups that are so culturally different from the rest of the Nation

that conventional programs will not be effective. Er.:,..iples of such groups

are some native Americans, recently immigrating Indochinese, families in

Appalachia. and residents of the Caribbean and Pacific territories.

Assessment of the health of the subgroup will reveal special needs that can

be met only by providing services in addition to those needed by all

children.

Indochinese Refugees

The recent irfiux of Indochinese refugees into the United States

demonstrates the dynamism of the population's health needs and service

requirements. Before the refugees leaVe Asia they are examined for

tuberculosis. leprosy, venereal disease, and mental defects and disorders

(8). So far, the principal health problems of this population are

tuberculosis and parasitic diseases: time and experience will probably

reveal others. Although individuals with untreated, actively infectious

conditions and severe mental disorders will be excluded from entry.

moderate to severe personal health problems related to malnutrition, poor

living conditions, dislocation, and the absence of family supports are

likely to be widespread among those admitted into the United States.

Special Health Needs of Ethnic Groups

Some health problems are found exclusively or more commonly among

certain ethnic and racial groups, requiring special services for these

populations. Sickle-cell anemia s,--eening is appropriate for families who

are of black, Latin, or Mediterr can origin. Although the incidence of

sickle-cell trait is about 8 perceni among blacks, the trait does not affect

longevity and is not associated with discomfort, except under unusual

conditions such As flying in unpressurized aircraft (88). If both parents

have the sickle-cell trait, the chances are 1-in-4 that a child will have

sickle-cell disease. Individuals with sickle-cell disease have a markedly

shortened life expectancy. A prenatal test has been developed and is now

".I2 Families may available at Rutgers University to permit diagnosis of sickle-cell disease in

the fetus at 14-16 weeks of pregnancy. then choose to

terminate an affected pregnancy. Anemia screening followed by sickle-cell

screening of anemic children of black, Latin. or Mediterranean origin will

identify children with sickle cell disease. Early detection does not improve

the outcome of treatment, but because children with the disease are prone

to infections caused by streptococcus pneumonia, early detection permits

prophylaxis against this complication.

'Specimens are sent by air from anywhere in the United States for testing at Rutgers.

I2Ranurez. F. Personal communication. August 1980.

268

0
Tay-Sachs disease occurs in 4 out of every 10,000 births among

Ashkenazi Jews. The gene is carried by 3 percent of all American Jews

(88). Tay-Sachs screening programs have been quite successful when

limited to appropriate target populations.

Services Needed by Children Who Are Abused or Neglected

Based on the rates reported for Denver and New York, an estimated 2.5

to 3 children out of 10,630 suffer from child abuse during a year's time

(89). Although child abuse reporting has increased since the passage of

new laws in many States, and although many more cases are reported than

proved, many ithorities contend that child abuse is greatly underreported (90). Some suggest that rates for "accidental" deaths and injuries

include many cases of abuse (91). Much can be done for neglected and

abused children and their families. Child abuse and neglect is a symptom,

not a disease, and the causes may be poverty, social incompetence, mental

illness, or a combination- of these factors. Appropriate steps for the

alleviation of such neglect or abuse can include fording jobs for parents,

providing day care and homemaker services for respite from difficult

children, and participation of parents in lay support groups.

Services Needed by Children Receiving Care Away from Home

Children in day care centers, at camp, in foster care, and in institutions

have special health service needs. Some of these needs result from

separation from a child's natural parents, and some from the group setting

or distance from medical care facilities. Foster children need preplacement health assessments, their natural and their foster parents need

counseling, and special efforts should be made to ensure continuity of care

if they are relocated. Foster parents should know whether the children in

their charge have been protected by appropriate routine health procedures

and whether they have any special health problems. Increased risks for

transmission of infectious disease result from bringing children together in

groups. Those who care for such children need special training in avoiding

these and other health risks.

Services Needed by Children and Families Where Chronic Disease

Affects Some Family Member

Children whose parents have chronic illness also have special health

needs. Alcoholism is one of the most common chronic diseases among

parents, and is estimated to affect more than 28 million children in the

United States. Such children experience emotional neglect, family conflict,

instability, divorce separation. and physical abuse from their parents.

School problems, delinquency, and fighting are common reactions. Only

some of their social and emotional needs can be addressed directly by heal ' services, but lay support systems, as extensions of alcoholic

treat. ent programs or other community service programs, might be of

significant benefit (92).

2v

269
Hospital-Based Services for Ill or Injured Children and Their Families

Emergency Room Services

Because children frequently suffer injuries and acute infections, they are

common users of emergency rooms of local hospitals. Emergency rooms

and inpatient hospital services are often noisy and busy, if not chaotic,

and can be very frightening for a child. Because of the frequency with

which children receive care in emergency rooms, such facilities should be

equipped and staffed to meet children's needs, but frequently are not.

Effective diagnostic and therapeutic decisions require a knowledge of

child.en's special fluid needs, responses to drugs, and the influence of

growth and development on illness and treatment.

inpatient Services

Forced separation of parents arid children during hospitalization is still

a common practice. and one that may have long-term psychological

effects (93-95). Parental presence during medical procedures, at mealtime

and bedtime and during the night helps the child to cope with hospital

experiences. and is especially necessary for infants and young :hildren.

When adults are hospitalized, their normal way of living and activity is

interrupted, but they can resume their usual activities when their health is

restored. Growing children, however, do not interrupt their developmental

processes for illness (96). Thus the impact of a hospital experience on

them is often greater than similar experiences are for adults. Special

services are needed in hospitals to mitigate the adverse effects of

hospitalization on children. In addition, because medical care needs for

pediatric hospitalizations differ from those for adults, considerable effort

has been expended to develop model criteria forhospital care of pediatric

patients (97). These standards need to be implemented.

Finally. hospital-based services for children should include family

counseling when a child dies. The effects on the family can be

devastatingespecially when it produces parental guilt. These effects can

be mitigated by sensitive support.

Additional Health Care Service Needs

Telephone Health Services

Child heaIth providers spend at least 10 percent of their time giving

advice to parents by telephone (98). Studies of doctor, nurse practitioner,

and pediatric health assistant effectiveness in responding to telephone

calls have shown that a variety of trained health personnel can share this

responsibility if they have adequate backup (99. 100). Coverage arrangements among health providers often result in telephone contact between

health professionals and patients who do not know each other. Although

telephone access (usually free of charge) is an assumed right of the paying

patient. this service is denied the poor allegedly because of concern about

270 2
die qntinuity of service or the adeqracy of care provided. Vet a number of

probtams have shown that telephone coverage can serve the needs of the

poor (98).

Continuous Romid-the-Clock Access to Health Facilities

A recent study showed that use of outreach workers decreased the

proportion of families who reported that they or someone in their fanny

postponed medical care from 23 to 10 percent (98). Outreach workers

increased the use of early and periodic screening, diagnosis, and treatment

services, and increased the keeping of well-child clinic appointments from

55 to 99 percent. Outreach can be done via the mass media, mail, or

telephone by trained workers sensitive to the background of the families

served.

Ample evidence exists that the need for outreach is not limited to the

poor. Immunization levels among middle-class school children have been

shown to increase with outreach efforts (101, 102). Merely the use of

mailed appointment reminder cards was shown to increase the rate at

which appointments were kept from 78 to 88 percent among military

dependents (103). Outreach efforts in a variety of locations and in

conjunction with other activities popular with the target population are

likely to be the most effective. For example, immunization levels have

been increased by coordination with Head Start day care programs and

with church congregations.''

Monitoring the Quality of Health Care

Monitoring the quality of health services ensures a minimum standard

of services and reduces incompetent or fraudulent practices. For example,

immunization, one of the most effective preventive services, is not being

provided to between 20 and 40 percent of children receiving private wellchild care (1). This oversight is due to absence of adequate tracking and

followup systems for patients and to the absence of mechanisms for

monitoring the quality of office health care. Surveys of records of private

pediatric practices, neighborhood health centers, hospital outpatient

departments, prepaid group practices, and public clinics indicate that

much less service was recorded in children's health records than the

providers claimed they delivered (104). Only 25 percent of the records of

solo practitioners who claimed that they perfe7rn anemia screening,

showed that an anemia test had been done; only 45 percent of the records

noted vision screening. The best performance was demonstrated in the

prepaid group practices, where 85 percent of the records showed evidence

that anemia screening had been done and 40 percent showed evidence of

vision screening.

Techniques are available to assess the quality of medical care based on

health outcomes and standards for specific conditions or health needs.

They could be used to audit pediatric practice (105, 106).

"Dens. R. Personal communication: Pennsylvania Department of Health. September 1979.

271

2S12
Training of Health Professionals in Health ':.are Quality Standards

The Task Force on Pediatric Education has outlined a course of

training for medical students and residentssignificantly different from

current training programswhich includes child advocacy: identification

and management of behavioral disorders; accident prevention, and the

importance of health n.aintenance, lifestyle, preventive care, and anticipatory guidance. in addition to the more traditional pediatric curriculum.

The Task Force also recommended training in the biosocial and

developmental aspects of pediatrics, adolescent medicine, chronic illness,

clinical pharmacology, community pediatrics, health maintenance, medical ethics, nutrition. and tnusculoskeletal and skin disol..lers (107).

Because the costs of many of these services are not reimbursed under

third-party payment plans, and no way presently exists to finance such

training, little incentive to teach prevention and primary care can be

found.

Increasing the Effectiveness of C via Health Manpower Resources

Estimates are that only 63 pe-ct..nt of childr. could receive adequate

care from fellows of the American Academy of Pediatrics, even if all of

them worked exclusively in the proIsior lf well-child cart. Because large

segments of the population are underserved and could not be served by

the present supply of pediatricians, partnerships with other health

practitioners may be necessary to ensure delivery of high-quality preventive health care to all children (108). Nurse practitioners and nysicians'

assistants supervised by pediatricians have been shown to be as effective

in the provision of well-child care as pediatricians (109).

An increasing trend toward pediatric group practice and an increasing

interest among pediatricians in salaried positions have developed (110).

Pediatricians and internists work comfortably side by side in prepaid

group practice, providing family-oriented health care. However, the roles

of nurse practitioners, physicians' assistants, pediatricians, and family

practitioners should be clarified to improve effective delivery of child

health care.

Recommended Regulatory Provisions

Many child health needs can best be met by changes in the

environment. Many of these changes require Government action, although some changes could be brought about by individual and

communi. actions. The following measures address the most significant

health risks to children.

(1) Establish and enforce safety regulations for sites and sources of

frequent injuries required protection of children a.- ressengers

in motor vehicles, standards for playground equipment, playground surfaces and swimming pools, bicycles and biking

equipment, and sports equipment.

(2) Modify pedestrian, bicycle, and motor vehicle thoroughfares for

increased safety.

272
(3; Establish and enforce building codes that require handrails on both sides of stairs and at least on the right-hand side

descending. lighting .3f the entire stairway, and installation of

smoke detectors.

(4) Enforce regulations for childproof packaging of medications and

require such packaging for all hazardous household products. (5) Require installation of thermal regulators on all new water

heaters for home and child care facilities so that subscalding

temperatures are maintained.

(6) Enforce environmental controls and provide adequate resources

to reduce health risks from air, water, and noise pollution.

(7) an smoking in all public buildings.

(8) Provide more accessible handwashing facilities in public places

including schools, day care centers, and recreational areas.

(9) Restrict TV advertising of junk foods on children's programs and

the availability of junk foods in schools.

(10) Implement standards for food programs in out-of-home. settings

(day care, schools, and camps).

(11) Require highly visible warnings on alcoholic beverages, tobacco

products, and over-the-counter drugs about their risks for

children and pregnant women.

Controversial He Ith Services

Renal Disease Screening

Urinalysis is in common use to screen for eviden.2 of blood, protein, glucose, or bacteria in the urine. Hematuria, proteinuria, and glycosuria are more often related to renal pathology than bacteruria, but the

correlation between frequently found positive findings on these tests in

school children and the very low annual rate of death from chronic renal

disease or of progressive disease on prospective studies suggests that these

screening findings may be of limited significance (111-113). The prevalence of urinary tract infection is 3 percent for preterm infants, 1 percent for term infants. For girls, the prevalence does not exceed 1.5 percent during school age; for boys it is 0.03 percent (112). Based on the natural

history of urinary tract disease, screening for bacteruria seems more useful

in infants and toddlers than in older children. Testing of indivici,.11s who

have never been previously screened might be justifiable, but the cost of

such screening relative to benefits to be derived is unknown. The

cumulative risk of a girl acquiring asymptomatic bacteruria by the 12th

grade is 5-6 percent, but this condition is thought to be benign except when complicated by symptomatic infections (113). Therefore, early

detection of as,. mptomatic bacteruria seems to be of limited value.

Perinatal Home Visitor Service

A lay support system of home visitors has been proposed to helpensure

that the basic health needs of every child are met, especially during the

first 4 years of life (114). The health visitor would be a successful parent,

284

EV-1

273
chosen by a neighborhood to be a bridge between the families of the

neighborhood and the health care system. Such a service exists now in

several European countries where concern for invasion of parental rights

has not been a problem. The health visitor would focus on helping to

fulfill health needs of all family members, advise on preparation for child

care and handling of minor problems, provide basic consume. health

education, and be an advocate for the family with the health care system.

As a minimum, the health visitor would come to the home on a

prearranged basis regularly in the first months of life and twice yearly

thereafter to school age. Such a service would require one half-time health

visitor for 50-60 children. Many agree that such a system is workable and

desirable.

Care of Ill Children of Working Parents

With the increasing number of mothers of young children in the labor

force, there is a great demand for quality day care services. The majority

of day care programs exclude children with all but the most minor

illnesses. Because of the high incidence of acute infectious illness in early

childhood, the management of ill children will always pose a difficulty for

working parents. day care programs, and schools. In one approak.h to this

problem, caregivers go to the homes of children who are too ill to attend

the:r usual day care programs and whose parents are unable to stay home

them (115). Even this arrangement. however, does not provide a

familiar caregiver at a time when a child really needs one. Day care

program policies for cart of ill children, or employer and school policies

for leave for the parents of ill children could be more lenient. Denmark

has chosen the latter course and gives both parents special leave benefits

when their children are ill.

Podiatric Screening

Because many people suffer foot disorders without complaint during

childhood, only to develop disabling problems as adults, podiatric

screening of children in schools has been suggested by members of the

American Public Health Association. The extent to which physicians fail

to detect foot disease in children for appropriate treatment is not known,

and the extent to which this results in disability or discomfort is also

unknown. This gap in knowledge could be addressed through podiatric

screening of sample pcpulations to establish the extent of need for foot

care. If it proved needed, training in podiatric screening could be included

in di., training of primary health care personnel.

Conclusions

In 1977, Kenneth Keni,,tonlisted the following major changes in the

current health care delivery system that are necessary to meet child health

reeds:

Recognition of the nonmedical influences on health in the

planning and delivery of health services

274

285
The removal of racial, ethnic, and economic barriers that prevent

some children from receiving health care

The organization of health care delivery systems for children that

emphasize preventive care, primary ca and more humane care

Requirements for health service agencies to deliver high-quality

services to every child and to be publicly accountable

Increasing and strengthening the capacity of parents and children

to act on their own behalf (116)

Now is the time for action for the health of children. Health services

appropriate for the whole population and additional services for subgroups with identified special needs are only part of what is needed. To

reduce risks to child health reouires more than conventional "medical

care." Supportive social services to families, strengthening of communities

through better housing and schools, and control of environmental risks

are also required. Although health care services are not a complete answer

to child health problems, much can be done to improve child health

through better delivery of child health services.

APPENDM: KNOWN RISKS TO CHILD HEALTH

1. For children under 1 year of age (infants)

a. Immaturity.;-(see other paper on maternal and -,..egnancy services)

b. Birth associated complications

c. Congenital anomalies

d. Sudden infant death

e. Accidental deaths and injuries

(1) Ingestion of food or object

(2) Motor vehicle

(3) Mechanical suffocation

(4) Fires, burns

f. Infectious disease

g. Undernutrition and overnutrit.on

h. Failure of attachment. -bonding"

(I) Process of birthing

(2) Being born unwanted

(3) Inadequate parenting skills

i. Affect of childbearing, parenting on marital stability and family

mental health status

j. Socioecono-nic, educational. ana housing inadequacies

2. For children ages 1-4 (toddlers and preschoolers)

a. Accidental deaths and injuries

( I) Motor vehicle

(2) Fires, burns

(3) Drownirg

(4) Ingestion of food or object

(5) Falls

(6) Product related injuries USCPSC

b. Congenital anomalies

c. Cancer

275
d. Infectious conditions

(1) Upper respiratory conditions

(2) Systemic infectious diseases

(3) Parasitic diseases

(4) Influenza

(5) Digestive system conditions

e. Quiet conditions

(1) Nutrition

(2) Dental

(3) Sensory defects

(4) Lead poisoning

(5) Child abuse and neglect

(6) Behavioral, emotional problems

(7) Developmental delay

f. System diseases

(I) Respiratory diseases, asthma, and allergy

(2) Metabolic diseasesdiabetes

(3) Digestive system disorders

(4) Urinary tract diseases

(5) Convulsive disorders

(6) Skeletal disorders

(7) Skin disorders

g. Pediatric antecedents of .dolt disease pertinent to this age group

(1) Hypertension fostering conditions (e.g., excessive salt intake and

other deleterious nutritional habits)

(2) Elevated serum cholesterol

(3) Obesity

'1. Socioeconomic, educatior.al, and housing inadequacies

3. For children ages 5-14 (primary, mid- to late-latency children)

a. Accidental deaths and injuries

(1) Motor vehicle

(2) Drowning

(3) Fires, burns

(4) Product related injuriesUSCPSC

b. Cancer

c. Congenital anomalies

d. Infectious conditions

(1) Upper respiratory conditions

(2) Influenza

(3) Systemic infectious diseases

(4) Parasitic diseases

(5) Digestive system conditions

e. Quiet conditions

(1) Nutrition

(2) Dental

(3) Sensory defects

(4) Child abuse and neglect

(5) Behavioral and emotional problems

(6) Learning disorders

f. System diseasescontinuum from early childhood

276
g. Pediatric antecedents of adult disease

(1) Hypertension-fostering conditions

(2) Elevated eerum cholesterol (3) Obesity

(4) Cigarette smoking

(5) Poor physical fitness h. Socioeconomic, educational, and housing inadequacies

ACKNOWLEDGMENTS

The it assistance of Dr. Robert S. Shane of Shane Associates, inc., as

a reviewer and of Miss Martha Kirby, librarian at The Medical College of Pennsylvania, contributed greatly to this paper.

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24 283
ADOLESCENTS: HEALTH STATUS

AND NEEDED SERVICES

by

LORRAINE V. ICLEnp4AN. I3R. P.H.

wrrii MARY GRACE KOVAR AND SARAH S. BROWN

INTRODUCTION

Promoting the health of adolescents is a particularly difficult task

because of the unique physical and psychological characteristics of the years between childhood and full maturity. Not only is this a period of

rapid growth and change in anatomy and physiology, but it is also a time of shifting value systems and allegiances. During this period many young

females and males become concerned with their bodies and how they work, yet they 'move away from those who might help them understand: their parents, teachers, counselors, and other authority figures. On the

threshold of adult life, many do not have the cognitive powers essential to perceive the consequences of today's actions for the years ahead. They

seek advice and models of behavior in their peers and make decisions on

the basis of the immediate present rather than the distant future. Health problems that have emotional or psychological components, often in addition to anatomical or physiological bases, are very important in this age group. Examples of such problems a. motor vehicle and other accidents. suicides, substance abuse, and weight control. The prevention

or treatment of these health problems requires a broad-based approach to health care including an understanding of adolescent psychology and

insight into the environment from which the adolescent comes. The cognitive ancLpsychalogicalxnau-m.of the adolescent years have

important implications for the delivery of health and related services. Released from childhood dependence, most adolescents do not proceed directly to adult responsibility. Rather, many pass through stages characterized by an "it can't happen to me" ideology and a critical a-..pprais' al of adult values and practices. These attutudes, coupled with

anxieties about bodily changes, make it essential that services be

developed specifically for this age group. Another important factor to consider in planning services is the

significance of peer relationships at this age. Many attitudes, values, and

behaviors are likely to be modeled on those of the social group. It is very difficult for adolescents to take actions that will put them "out of step" with others of their age. Personnel trying to prevent harmful or promote

285 295
healthful behavior should be aware of the power of the peer group and

consider its use as an instrument of change. Ironically, the questioning, independence-seeking, and risk-taking

behaviors of adolescents are psychologically healthy ones. If adolescents are to develop into well-functioning adults they must renegotiate their

relationships with their families and others who have guided them and

assumed responsibility for their actions since they were children. If they

are to be the innovators and leaders of the next generation, they must tread new paths, take risks, and test the assumptions of previous generations. While trying to promote the health of adolescents, the health

system must beware of creating physically healthy adolescents. who are dependent, passive, and fearful. The needs of adolescents have only been an important concern to the health and social welfare field since the Second World War. In earlier

times, only a small percentage of those in their middle or kite teens were

still students. Many young males were employed and young females were also working inside or outside their homes. Society's needs for more

skilled workers, and the dearth of jobs for the unskilled or semiskilled, in

conjunction with a lowering of the age of sexual maturity, have caused a prolongation of the years between childhood and full adult status and

contributed to the creation of the period nv3w called adolescence. (See background chapter in Youth: Transition to Adulthood (1).) This prolongation and the feelings of anomie that it seems to foster apparently

has created or intensified some health problems that either previously did not exist or were not recognized as such, including accidents, suicides, adolescent pregnancy, and alcohol and drug abuse. Also, with the

increased control of infectious diseases, society could begin to concentrate on other sources of disability and death, and their precursors. In this

context the adolescent came into focus. Not only did many adolescent behaviors appear to have negative consequences for their present and

future health, but they were behaviors (for example, sexual activity or alcohol use) that many adults felt were inappropriate for those who were

still students or economically dependent. It is important, moreover, for those in the health and social welfare

fields to realize that just as trends in education and employment have helped create some adolescent health problems, changes in these and

other areas may be more effective than medical interventions in alleviating

them. A more meaningful educational system and the possibility of employment in challenging occupations might motivate many adolescents

to adopt healthy lifestyles. When both the present and the future look

dismal, there is little incentive to seek help for medical or other problems or to avoid health-threatening behaviors. In the absence of changes in the

social policies that cause adolescents to despair, medical and other social welfare interventions will have only a limited impactparticularly upon

the underprivileged.

INFORMATION NEEDED FOR PLANNING

At a minimum, five types of information are essential to the effective planning of programs focused on the promotion of the health of

286
adolescents.' The first is an understanding of the normal growth and

development of youths physically, emotionally, and cognitively during the adolescent years. Only with an understanding of the stages of develop- ment, their timing, and the behaviors associated with each stage is it possible to anticipate both medical and psychological problems and the

reactions of adolescents to attempts to assist them. The second is information about the number of adolescents in the

population, the numbers that can be expected in the remaining years of

this century, and their sociodemographic characteristics. The third is knowledge about abnormal health status, particularly the causes of death, disease, disability, and discomfort; and today, the prevalence of deviant behavior can be added to the traulitional four D's. The Federal Government through its varied data collection procedures can provide nationwide information in many of these areas, while

important supplemental information can be obtained from studies of subgroups of the adolescent population. A fourth important input is information about the utilization of services currently available. Although clearly these data do not measure need (at best they only approximate demand), they provide some useful insights

into the effectiveness of various elements of the present health delivery

service.

Finally, reports on what adolescents themselves perceive their needs to be and their suggestions about the operation of programs can assist in

planning.

Normal Adolescent Development

The physical changes during the adolescent period are dramaticand

at times iipsett=mgto both adolescents and their parents. A rapid increase

in height and weight is easily noticed and norms have been established, largely through the work of Tanner (2) who statei that the adolescent growth spurt

. in boys takes place on the average, from 12 1/2 to 15, and is

responsible for a gain in height of about 20 cm. (range 10-30 cm.) accompanied by a gain in weight of about 20 kg. (range 7-30 kg.). The peak velocity of height growth averages_about 10 cm. (4 inches) per year, which is the rate the boy was growing at age 2. The time at which this maximum velocity is reached averages about 14 years, though it may lie anywhere between 12 and 17. In girls the spurt begins about 2 years earlier than !n boys, lasts m the average from

10 1/2 to 13, and is somewhat smaller in magnituet, the peak height velocity averaging about 8 cm. per year. Data from Cycle III of the 1966-1970 Health Examination Survey (3), suggest that the growth spurt may be occurring in the United States about 6 months earlier for boys and about 3 months earlier for girls. Of possible great concern to adolescents is the rapid sexual develop- ment during the teen years. Both sexes are challenged by alterations in

body configuration and characteristics: male genital development, female

The current status of knowledge in each of these areas is summarized in the sections that follow.

297 287
breast development, and growth of axillary and pubic hair. Males

experience changes in voice quality and nocturnal emissions while females adjust to the menstrual cycle. These physical changes are accompanied by

the development of sexual interests. It is crucial, however, that individual differences in rates of growth and development be understood. Not only are there racial differences, but

individuals within each race may vary widely, probably as a result of the

interaction of genetic and environmental conditions. Adolescents fre- quently exhibit concern over their rate of development in relation to their peers or to norms they believe exist. The helping professions must be able

to reassure adolescents based on a knowledge of individual variability

and, when a significant deviation from the norm is discovered, be

knowledgeable about the possible reasons and interventions. The psychosocial changes and cognitive growth of the adolescent years sometimes are as dramatic as the physical These changes have probably

been most extensively discussed by Erikson (4), who stressed the task of

identity formation' through the adolescent years. Among the significant occurrences are a changing of relationships with the family. Most adolescents gradually loosen their bonds to their parents and attempt to

assert their independence. This is accompanied by increasing dependence

on peers for social support. The peer culture at this age may significantly

affect all types of behavior, from determining what will be worn to

whether female virginity is an asset or a liability. These pressures combined with physical growth and development and interest in the

opposite sex, lead to increased interest in body image. Intellectual ability may increase markedly. In addition, for many, the later years of adolescence are a time of decision about future roles in life.

Again, however, there is tremendous variability in the timing of these

changes and in their manifestations. Some adolescents grow into adulthood with few crises, while others become defiant, rebellious, and often deviant. Effective parenting can be a significant factor in assisting

adolescents to negotiate this period successfully. As Conger has noted: Parents who are caring and encouraging of self-will and indepen- dence, but who also have clear standards and expectations, are

significantly less likely to have children who as adolescents become

involved in alcohol arc: drug abuse, premature sexual activity,

delinquency, school problems, alienation, etc. than parents who are

either authoritarian, on the one hand, or "equalitarian," overly

permissive, or neglectful, on the other. Their children are also more

likely to feel wanted, be more self-confident and independent, have

respect for their parents and their parents' values, and maintain

communication with their parents. The helping professions cannot ignore the psychosocial needs of adolescents any more than they can ignore their physical needs. To treat them as children, or as adults, in most cases is to turn them away_ An understanding of the new relationship with parents, particularly the

independence-dependence tension, and of the importance of the opinions

of their peers is essential if health promotion efforts are to be effective.

2C.osiger. J. L Pascoe cominunicatior
Demographic Prolile3

In 1978,24 million persons in the United States, about 11 percent of the total population, were 12-17 years of age.4 About 84 percent of these

children and youths were white, 14 percent were black, and the remaining

2 percent were of other racial backgrounds (table I)(5)- Because the children who will be adolescents in the year 2000 will not be born until 1983-88, and because predicting fertility is at best a risky

business, projections of the size of this population vary greatly under the

three fertility assumptions employed by the U.S Bureau of the Census. The low fertility projections, Series III, assumes an average of 1.7 children per woman. This figure is considerably lower than is being experienced

today and lower than the 2.1 chi-dren young married women say they

expect. Thus it is unlikely that a d, cline of this magnitude will occur, and the future size of the population 12-17 years old will probably be as large or larger than it is today (table 2) (5-7). During 1975-76 the southern region of the Nation was home for 32

percent of this age group, while only 18 percent lived in the west. This distribution was similar to the population of all ages. Racial differentials

remain' ed despite the high levels of migration within the United States. White youths were most nearly equally represented in all regions; 29

percent lived in the south and in the north central region, 24 percent in the northeast and 19 percent in the west. Black youths were still heavily

concentrated in the south; more than half (55 percent) lived there in 1978, while only 9 percent were in the west. The other racial minority groups were as concentrated in the west (59 percent) as the blacks were in the south (8).

Most adolescents, like other people in the United States, resided in or near cities. Racial differences surfaced when central city residence was compared with suburban residence. Twenty-two percent of all white children lived in central cities compared to 52 percent of all black children. Farm residence was rare among all races. The largest proportion was in the white group (4 percent). The other minority groups were almost evenly split within standard metropolitan statistical areas between central and noncentral city areas; 44 percent were in the cities and 40 percent were outside (8).

Almost one-quarter of the adolescents in the United States came from families with only one parent present; 19 percent of the white, 29 percent of the black, and 28 percent of the other minority adolescents. Fourteen

percent of the black youths were in homes with neither parent present (8). Despite overall national wealth, a large number of children were members of impoverished families. In 1977, 16 percent of all children under age 18 lived in families with incoms below the poverty level-11

3This section w adapted from material prepared by Mary Grace Kovar.

*The age sprit encompained by adolescence is a matter of controversy. Some experts limit it to 12-17 yews of age asd edam: emend it to 10-20 yens or beyond. This piper will not contribute to the debate:

rather is wall utilize whatever range seems appropriate to the subject under discussion. In the date section.

however. die 17 grotqiing will be used most frequently in several large sets of Federal data are

cattiporized -my. Some peed consultants. however. have commented that alternative. preferrably

cbsaggregated pospiugs would improve knowledge of adolescent health needs.

289
TAU 1, high a 110(0181111 Apt 12.11 by ABS, Ilec, ind Riot IM d Ilisk

Om bra In taw*

M IIasNN

04, Toll Nil Pais

Al agh 24,102 12,268 11,814

12 ows 3,672 1,849 1,173

13 yom 3,842 1,864 1,41

14 yurs 4,085 2,125 2,000

15 mis 4,136 2,111 2,0e5

16 yssrs 4,162 2122 2,040

17 yen 4,255 2,167 2,066

Tcoil Me Poi

20,100 10,338 9,672

3l001 1,5381,469

3,201 1,6351,572

3,418 1,1481,610

3,488 1,113 1,65

3,498 1,7871,711

3,22 1,84 1,755

Tohl Mir km*

3,476 1,752 1,724

542 273 39

515 283 281

595 301 295

592 299 293

589 37 292

593 299 34

Ition

Tohl Ni Pei

445 228 219

13 37 36

70 36 34

72 36 36

76 39 31

75 38 37

79 40 39

OMACt VS, kr* tto Coo, 19/910oloo tho It tlondMe Unitod &too by Ago, Si k at Reco:1918 to 1976," arronf PoA4gon Romig Woo

P.25, No, NO. Weiritat, Ocimm61 Prineng OfIco, TM 2.

TAU 2, MIN sad Nubs ol as Ppleke 46:1 12.17 WI, WO,1141N0,1910, 030

(maws h tom*

Al km w 1Is Neck Oto Ras

Yost kW I kiss II bre M Ws I lob Min l kW I kW U NIIM 111 hea I MN 11 Mu M

1970' 24,125 20,804 3,180 343

1978 24,102 201180 3,476 445

19801 22,737 22,737 22,131 18,913 18,913 18,913 3,356 3,356 3,356 466 466 466

1990 19,939 19,240 18,781 16,115 15,542 15,153 3,149 3,039 2979 677 662 650

2000' 29,784 24,084 20,567 24,114 19,720 16,768 4,101 3,469 3,001 964 876 791

*Kg US, eau cd CM, a WU ONO:1k 1910. GOWN Population CtincWatico, U,S. Wei PC(I)Im, U.S. brut Printing 0154,

WrhI on,D,C.,Teble60,

Iftt U Meg h GUIIn CantPopilkdipat Ssrla P415, Nos KA Was of the Pools* Writscl Slat* by*, Su, and Ram 476

to 1971, U1 Omni Pool 053, MoNr461, D,C, Tatio

to u,s, elm of the Celt, fa Wiwi *Cm Apt Woo P.25, No. 704, Polocke of h Popi don of h United btu 1977400. US, bond Pdrito MA won, D.C. Tenn

300
percent of the white children, and 42 percent of the black children. Black

children and those in families headed by women went substantially less well off financially than others. Half (50.3 percent) of the children in

families headed by women were classified as existing below the poverty

line; 40 percent of the white children, and 66 percent of the black children

(9).More than one-third (38 percent) of the adolescents lived in families headed by a person who had not completed high school, and one-third (34 percent) by a person who had completed exactly 12 years of school. Only

15 percent of the family heads had completed college. The family heads of black and other :-.Lin.ority youths had less education than those of white youths; 36 percent of the black youths and 43 percent of other minority

youths as compared to 33 percent of white youths were from families with

-a head who had not completed high school (8). Adolescents participate in both child and adult roles. In most States the legal age of marriage is between 12-17 years of age- The number of

teenagers who choose to assume this particular adult role, however, i3

declining. For the women born between 1935 and 1939, 151 out of each

1,000 had married by age 17; 262 by age 18. By the time the women born

in 1950-54 reached age 17, only 75 per 1,000 had married; at 18 this figure was 155 ( 10). This change in teenage marital status has coincided with an

overall decline in teenage fertility since the late 1950's, but an increase in

the proportion of births that are out of wedlock. This demographic profile suggests that the size of the population 12-17 years of age will remain relatively stable at 10-12 percent of the total population. It also points to significant differences in distribution and

sociodemographic characteristics by race. Of perhaps greatest significance

is the number living in or near poverty, in single parent homes, and/or homes headed by a parent with limited education. These conditions have major implications for the design of programs to alleviate health and

allied social problems.

Health Status5

By the traditional morbidity and mortality measures, the health status of adolescents in the United States is good. The acute illnesses of childhood seldom plague them, and for the most part, the chronic

conditions of later life are still ahead. Nevertheless, adolescents not only

suffer from disability, disease, and death; they also endure the stresses of

rapid growth and adjustment in a world that is not always friendly.

Mortality

In 1977 the death rate for children 10-14 years of age was 35.1 per 100,000 resident population, and for those 15-19 it was 101.6. These death

rates compare favorably to those under 5 and those over 19, but obviously

5This section was adapted from material prepared by Mary Grace Kovar.

291
the 15-19 group is beginning to leave behind the relatively healthy era. Moreover, between 1960 and 1977 the death rate among 15-19-year-olds

increased by 10 percent, largely because of increases in deaths from

external causes such as suicide and motor vehicle accidents (11).

For every 10,000 adolescents alive at the beginning of 1976, 6 had died

by the time that year ended-4.4 per 10,000 teens age 12-15 and 9.1 per

10,000 teens age 16-17. Accidents, particularly involving a motor vehicle,

are the major cause of death among adolescents. Thirty-six percent of

adolescent deaths are motor vehicle related; 28 percent of the deaths

among 12-15-year-olds. and 43 percent of the deaths among 16-17-year- olds. Other major causes of teenage deaths are homicide (6.5 percent),

drowning (63 percent), suicide (5.4 percent), and fire and flames (1.6

percent). If accidents and other violent deaths were eliminated among

teenagers, the death rate at these ages would drop by 70 percent. The most

common diseases causing death are malignant neoplasms (8.4 percent),

including leukemia (3.2 percent) (12, 13).

Morbidity

The examining pediatricians in Cycle III of the Health Examination

Survey of 1966-70 found that more than one ouz. of five adolescents had

some illness, deformity, or handicap (primarily physical) affecting normal growth, development, or function. Of those abnormalities diagnosed, 34

percent involved a neuromuscular joint, 33 percent were musculoskeletal,

21 percent were cardiovascular, and 8 percent were neurological. Kidney

problems were present in 5 percent (14). Visual and hearing abnormalities also afflicted large numbers of youths.

Thirty-four percent wore corrective lenses; however, 31 percent of these

still failed to reach the 20/20 level in vision testing (15). Almost one

adolescent in six (16 percent) had some abnormality of one or both

auditory canals, and one in seven (15 percent), had some abnormality of

the tympanic membrane or drum. These problems were associated with

hearing difficulties in about 1 percent of adolescents (16).

The Health and Nutrition Examination Survey (HANES) of 1971-74

revealed that almost two-thirds (67.5 percent) of the adolescents needed

dental care; over half (53.6 percent) had one or more decayed teeth.

Young people 12-17 years of age had an average of 6.2 decayed, missing,

or filled teeth. About one-third had gingivitis or evidence of more serious

periodontal disease (17). HANES found significant skin pathology in 36 percent adolescents

12-17 years of age. Acne vulgaris was the most prevalent condition,

affecting 23 percent of youths_ Forty-seven percent of adolescents with

skin conditions that concerned them indicated that the conditions were a

handicap in their social relations (18). The stress of the adolescent years also may affect the mental health of

adolescents. Perhaps the most dramatic indicator is suicide. This is

currently the fourth leading cause of deafa in the teenage yearsresulting

in approximately 5,000 deaths per year (19). The President's Commission

on Mental Health noted that the rate of suicide among adolescents has

nearly tripled in the last 20 years (20). Suicide attempts are even more

292
common, especially among females, as are various forms of depressed behavior in both sexes.

Little data are available on the prevalence of mental illness, so it is necessary to c-atmine rates of utilization of inpatient and outpatient facilities to determine the extent of the problem. Mental disorders were the fourth ranking reason for Lospitalization of youths 12-17 years of age in short-stay hospitals, accounting for 11 percent of all days (20). According to the National Institute of Mental Health, over 80,000 youths 10-17 years of age were admitted to inpatient psychiatric services (private, State and county, and public and nonpublic general hospitals) in 1)75 a rate of 126.5 per 100,000 ages 10-14 and 433.4 per 100,000 ages 15-17.6 Outpatient psychiatric services were used by over 200,000 youths 10-17 years ofagea rate of 6573 per 100,000 ages 10-14 and 748.5 per 100,000 ages 15-17. Schizophrenia, adjustment reactions, and depressive disorder's were the most frequentdiagnoses. These figures probably underestimate the extent of the problem since many disturbed adolescents are placed in institutions for the delinquent, criminal, or retarded. The disparity in rates of mental institutionalization by race suggests that white adolescents with mental or behavioral problems are admitted to psychiatric facilities, while minority adolescents are confined within the correctional system. Studies of subgroups ofadolescents known to be particularly vulnerable for economic or other reasons underscore the prevalence of health problems. Brunswick and Josephson studied the self-reported and the professional appraisal of health among black youths in Harlem in the late 1960's. Three-quarters of theirsample reported at least one health problem and the average number of self-reported health problems was three. Physicians examining the same population found a medical problem in two out of three. One in three had two or more notable health problems (21).

Schonberg and Cohen have examined adolescents in a variety of settings. The most frequent reasons for admission to an adolescent inpatient unit were general surgery (11 percent) and gastrointestinal illnesses (11 percent), including drug-abusing teenagers admitted for care of hepatic dysfunction. In an adolescent ambulatory care setting, venereal disease (12 percent) contraception (11 percent) led the list of reasons for seeking care. Over 45,000 teenagers, mostly male, minority, and poor, were examined over a period of several years in a secure detention facility. An identifiable medical problem was found in 46 percent, including 30 percent with a history of drug abuse, and acute or chronic hepatitis secondary to intravenous abuse in 8 percent. Examinations of an all-male, predominantly black high school population revealed dental caries (35 percent) and infections, primarily of skin and genital areas (7 percent) as the most prevalent condition. About half the teenagers were unaware of the infections. Finally, the 350 teenagers in a series of group residences suffered most frequently from dermatological conditions, including acne, eczema, and contact dermatitis (80 percent) anus dental cavities (55 percent) (22).

Stational Institute ofMental Health. Unpublished data.

3 0 3 293
Another measure of morbidity is restricted activity. On the average,

adolescents 12-17 years of age are reported by their parents as having

about 10 days of restricted activity each. year and losing about 5 days from

school because of illness or injury_ About 5 percent are said to be limited

in activity and about the same proportion in fair or poor health (8).

Reasons for seeking medical care provide another indicator of the

significance of trauma to adolescent health. Accidents and violence were

second only to respiratory problems as the diagnosis leading to visits to

office-based physicians in 1975-76. They were the leading diagnosis for

days in short-stay hospitals, as well as the first cause of death. Twentythree percent of the hospital days, and 70 percent of all deaths of 12--17 -

year -olds are because of accidents and violence. Pregnancy and delivery

were the second most important diagnoses for hospital days. For females

they were the leading reason for hospitalization (23).

If visits to all medical care facilities rather than just office-based

physician visits were included in the calculations, both trauma- and

pregnancy-related diagnoses might rank higher on the list. Care for many

injuries is sought in hospital emergency rooms. Contraceptive services are

often received in family planning clinics. Many pregnant adolescents seek

prenatal care in hospital or health department clinics.

Behavior-Related Problems

Adolescents experiment with a variety of behaviors that may have

short- and long-range consequences for their health. These behaviors

include tobacco smoking, drinking of alcoholic beverages, use of illegal

substances, and sexual intercourse. Venereal disease and accidents due to

intoxication are examples of immediate consequences, but the effect of

these behaviors on adult morbidity may be equally severe.

In 1979, 11 percent of 12-18-year-old males and 13 percent of 12-18 -

year -old females were current smokers. This represented a decrease from

17 percent in 1968 for the boys, but an increase from 10 percent in 1968

for the girls (24) According to a 1979 study of high school students, alcohol was the

leading drug used Nearly all students had tried alcohol (93 percent) and

most (72 percent) had used it in the past month, in comparison to 74

percent and 34 percent for smoking tobacco and 60 percent and 37

percent for smoking marihuana. Although only 7 percent of students

reported daily alcohol use, 41 percent had on at least one occasion during

the two weeks before the survey, had five or more drinks in a row (25).

Alcohol use appears to be on the increase.

Marihuana use has definitely increased. In 1972, 14 percent of 12-17 -

yeas -olds reported ever using and 7 percent using in the past month; by

1979 the figures had more than doubled to 31 percent and 17 percent.

Use of other illicit drugs is considerably below that of marihuana, but

still a major problem. Ten percent of the 12-17-year-olds have used

inhalants; 7 percent, hallucinogens; and 5 percent, cocaine. Current use

percentages are much lower. Only the hallucinogens showed a significant

294 394
ease in-use ever between 1977 and 1979 and only the inhAlRuts a

significant a.se in use in the past month (26). The danger of illicit drug use is compounded when drugs are used in combination, or with alcohol. In adclition, these drugs are of unknown potency and often contaminated, which increases their potential to cause health emergencies. Another heath-related behavior is sexual activity, the consequences of which may include pregnancy and sexually transmitted diseases. Zelmic and Kantner report that the prevalence ofsexual activity among never married US.. teenagers increased by 30 percent between 1971 and 1976; so

that by age 19, 55 percent have had sexual ntercourse (27). If all other factors had remained the same, the substantial increase in sexual

experience would have been expected to result in an increase of adolescent fertslity. Instead, adolescent birth rates, which had been rising through

1973, have recently been declining, as have absolute numbers of births to

adolescents. The birth rate is still high among black adolescents, however, it too has dropped (from 101.4 live births per 1,000 women 15-17 years of age in 1970 to 812 per 1,000 in 1977)closer to the white rate of 26.5. Among girls not yet 15 years of age the birth rate has remained constant at

around 1.2 since 1970. Although these births (over 12,000 in 1972-1975) are only a very small proportion of all births, very young mothers are

especially unprepared physiologically, psychologically, economically, or

educationally for parenthood (table 3).7 The decline in adolescent birth rates is presumably due both to

increasing reliance on abortions to terminate unplanned pregnancies and

to effective contraceptive use. This does not mean, however, that contraceptive use in this age group is at an optimum level; Zen& and

1C.antner found that only 30 percent of sexually experienced never-married

females, 15-19 years of age always used contraceptives (27). It should not be assumed, however, that all adolescent pregnancies, even in the

unmarried, are unwanted. For many young females, having a baby is seen, somewhat unrealistically, as a very positive experience. Sucix births cannot be prevented by contraceptives or by abortions, but only by changes in

adolescents' perceptions about their futures. Sexually transmitted diseases are another adverse consequence of sexual activity, and gonorrhea is the most common. By the mid-1970's, gonorrhea had reached epidemic proportion in the United States. Recent data, however, suggest that the rate has stabilized (2S). Data on the exercise and nutrition patterns of adolescents are meager. Fad diets and "fast foods" are popular with this age group, and may result in caloric and nutrient intakes that are health damaging. Data from

HANES suggest that the mean dietary intake by adolescents of both

calories, and iron was below the recommended daily allowance for adolescents with income both below ar.d above the poverty level (29). Some adolescents, however, consume too many calories; approximately 10 percent of all adolescents are obese.

'Division of Vital Statistics, National Center for Health Statistics. Selected data.

295 305
TABLE 3. Live Births, Blest Rotas, and DIalributton d Oaths 10-11fornen Under

1$ Yeses ot itua, According to Aga of Mother and ROCS: United

Stales, 1980-1977. (Data ars based on Woe National Wad Registration

*yaws)

Race and Year

Number of Live

Births

Liver MM. Per

1,000 Women

Percent of AO

Live BMW

10-14

Years

15-17

Veers

10-14

Yaws

15-17

Years

Linder 15 "Alder 18

Yams Years

Toter

1966 8.128 186,704 0.8 35.7 0.2 5.4

1967 8,593 188,234 0.9 35.3 0.2 5.6

1968 9,504 192,970 1.0 35.1 0.3 5.8

1969 10,468 201.770 1.0 35.7 0.3 5.9

1970 11,752 223.590 1.2 38.8 0.3 6.3

1971 11,578 226.298 1.1 38.3 0.3 6.7

1972 12,082 236,641 1.2 39.2 C.4 7.6

1973 12,861 238,403 1.3 38.9 0.4 8.0

1974 12.529 234,177 1.2 37.7 0.4 7.8

1975 ...,642 227,270 1.3 36.6 0.4 7.6

1976 11,928 215,493 12 34.6 0.4 72

1977 11.455 213.788 12 34.5 0.3 6.5

WM.

1966 2.666 119.800 0.3 26.6 0.1 4.1

1967 2,761 118,035 0.3 25.7 0.1 4.1

1968 3,114 121,166 0.4 25.6 0.1 4.3

1969 3,684 128,156 0.4 26.4 0.1 4.4

1970 4.320 143.646 0.5 29.2 0.1 4.8

1971 4,130 143,806 0.5 28.6 0.1 5.1

1972 4,573 150.897 0.5 29.4 0.2 5.9

1973 4,907 153,416 0.6 29.5 0.2 6.2

1974 5.053 152,257 0.6 29.0 0.2 6.1

1975 5,073 148,344 0.6 28.3 0.2 6.0

1976 5.054 139.901 0.6 26.7 0.2 5.6

1977 4,671 138,223 0.6 26.5 0.2 5.3

13tack

1966 5.370 64,922 4.2 97.9 1.0 12.6

1967 5,742 68,133 4.4 99.5 1.1 13.6

1968 6,312 69,594 4.7 982 12 14.3

1969 6.650 71.020 4.8 96.9 12 142

1970 7,274 76,882 5.2 101.4 1.3 14.7

1971 7,264 79,238 5.1 99.7 1.3 15.3

1972 7,363 82,217 5.1 99.9 1.4 16.9

1973 7,778 81.158 5.4 95.8 1.5 17.4

1974 7.291 77.947 5.0 91.0 1.4 16.8

1975 7.315 74.946 5.1 85.6 1.4 16.1

1976 6,621 71,429 4.7 81_5 1.3 15.2

1977 6.582 71.182 4.7 81.2 12 14.3

Includes ail other races not shown separately. 28ase f percent includes birthe to aM women regardless of age.

SOUF=E: Division of Vital Statistics. National Center for Health Statistics- Selected Data
Service Utilizations

In the mid-1970's, adolescents averaged about 3 ambul itory medical contacts each year. The majority (68 percent) were in physicians' offices. About 15 percent were in hospital outpatient departments or emergency

rooms, 11 percent were telephone contacts, and 6 percent were either in other places oi- the household respondent did not know the place. This is less than the number of contacts reported for younger age groups (under 6, 6.5 contacts; 6-11, 3.4 contacts) and older ones (8). About a third (34 percent) of the adolescents had no medical contact during the year and 5 percent had not seen a physician for at least 5 years. The likelihood of having seen a physician during the year increased

somewhat with increased family income and increased greatly with

increased parental education. Only 57 percent of the adolescents had seen

a physician within a year if the family income was under $5,000 and the mother had not finished high school; 81 percent had if the family income was $15,000 or more and the mother was a college graduate. Even when

the family income was relatively high ($15,000 or more) the likelihood of the adolescent's seeing a physician within a year was relatively haw (63

percent) if the mother had not finished high school (8). Income was a major determinant of the place where medical care was received. In families with incomes under $5,000, 56 percent of the visits

v- to private physicians, 22 percent to hospital clinics or emergency

rooms, and 13 percent to other clinics. In families where the income was $15,000 or more, 72 percent of the visits were to private physicians, 1 I percent to hospital clinics or emergency rooms, and 3 percent to other clinics (8). Access to care, as usually defined, did not appear to be a major problem, at least to the respondents (usually the mother). For example, about 12 percent of the adolescents had no regular source of care. When

asked the reason, the majority (57 percent) said there was no need. The next most common specific response (18 percent) was that different

sources were used depending on need, but a larger proportion (26 percent) gave no reason. Very few (7 percent) of the respondents reported that they had tried to obtain medical care &ming the year but had a problem; the most common problem was that they could not get an appointment as

soon as needed. Even fewer (4 percent) reported that the adolescent had

an unmet health need (30). These data may not accurately reflect adolescent utilization. Adoles- cents receive health care at clinics and health centers such as VD clinics, family planning clinics, teenage health centers, and community mental health centers. Whether those visits are known to the parent or, if known, are reported by the household respondent is an unanswered question. In the dental area, about a third (36 percent) of adolescents were

reported to have had no dental care within a year; 11 percent had not seen a dentist for 5 years or more. Lack of dental care is even more strongly

81-kos. section was prepared by Mary Grace Kovar.

3 0 7 297
associated with income than lack ofmedical care. For example, 64 percent

of the adolescents in families with incomes under $5,000 in contrast with

24 percent in families with incomes of $15,000 or more had not seen a

dentist within a year; 78 percent and 55 percent respectively needed

dental care (8). Additional information is available about the utilization of one specific

service, family planning. Dryfoos and Heisler reported that about 1.2

million females under the age of 20 obtained contraceptive care from

2,494 agencies in about 2,500 counties in 1975. This represented 30

percent of the 3.9 million patients in organized programs. Although their

study did not include services provided by private physicians, they

estimated that an additional 1.2-1.3 million teenagers received contraceptive care from the private sector in 1975. The growth in utilization of

family planning clinics by teenagers has been dramaticfrom under

300,000 in 1969 to over 1 million in 1975. Health departments served the

largest proportion (47 percent) followed by Planned Parenthood affiliates

(28 percent) and hospitals (13 percent) (31). These figures undoubtedly

reflect the increasing number of females in this age group, their increasing

sexual activity, the liberalization of State laws on the provision of services

to this group, and a more responsible attitude toward sexual activity by

adolescents.

Needs as Perceived by Adolescents

There are relatively few studies of adolescents' perceptions of their own

needs or of their preferences in the area of health care services. Parcel et

al. found that adolescents in two Galveston high schools were concerned

about school, drugs, sex, parents orfamily, getting along with adults, birth

control, venereal disease, pregnancy, and menstrual periodsin that

order. When asked to indicate on a list of health problems those they

would like to have help with, they most frequently checked acne, how far

to go with sex, depression and sadness, overweight, and getting along with

parents (32). Several federally sponsored studies have addressed adolescents' feelings

about family planning facilities. On the basis of interviews with clinic

personnel, patient questionnaires, and patient interviews, one research

team concluded that there were three threshold conditions a clinic had to

meet to attract teens: (1) make its availability known, (2) guarantee

confidentiality and anonymity, and (3) be affordable. Secondary factors

influencing an initial visit were location, ease of transportation, convenience of clinic hours, length of appointment wait, and ease of admission.

Factors influencing satisfaction with service and inclination to continue

attending were interaction with clinic staff, confidentiality, length of

processing time, and method of payment. Less important were sex, age,

and dress of staff, professional qualifications, teen-oriented decor, and

teen-only sessions (33).

298
HEALTH SERVICES THAT SHOULD BE

AVAILABLE TO ALL ADOLESCENTS

The information provided in the series of studies just reviewed suggests

that a large number of services are essential to adolescent life or adequate development, or at least could significantly improve health status or

general well-being. These services will be reviewed in a sequence that reflects the author's views on which ones will affect the largest number of adolescents and may have the greatest impact on adolescent health in the

long run. Those discussed first will touch the most; those mentioned later focus on smaller groups. The problem of priorities, however, can be

examined from another perspective, namely the urgent need to intervene

in crisis situations. Many of the services directed at subpopulations with

special needs because of health problems (such as pregnant adolescents) or physical location (street people, for example) are essential if major health problems are to be corrected or prevented. It is impossible to

suggest that they should be ignored in favor of health promotion activities whose "pay-off" is uncertain. Clearly the answer is to find funds for both

types of activities; a choice between them is impossible.

Health Promotion

The data on causes of death and disability and service utilization

suggest that programs of health promotion should have a significant

impact on adolescent health. Health promotional activities, however, should not begin in adolescence. They should be initiated in early

childhood and be reformulated in the adolzent period so that they are

appropriate to the developmental stage. Attempts at health promotion in its broadest sense must be viewed in

the larger context of the adolescent's world. As in so many other areas, it is impossible to separate health from economic and other social problem

areas. For the adolescent who by law in most States must remain in school until middle adolescence, the educational environment is of great significance. Students who find their studies interesting and relevant are more likely to be interested in their health and to absorb the health

curriculum. If the school is a "hassle," alternative sources of satisfaction

and challenge will be sought, frequently those having a negative health

impact. It is important that schools enhance rather than reduce student's self-esteem. Brunswick et al. have reported that a sense of personal efficacy and self-esteem are associated with high levels of medical care

relative to health problems (34). Self-esteem is enhanced when students are challenged by a variety of tasks that they can master. Those that are

too hard may cause a sense of defeat, while those that are too easy do not provide enough stimulus. Although minimum levels of competency in

reading, writing, and mathematics should be expected of all youths in the normal intelligence range, the academic-nonacademic balance of the curriculum should be varied according to student need. Additional

303 299
emphasis on prevocational training, athletics, music and art, outdoor

activities, and a range of community service projects may provide the challenges necessary both to enhance self-esteem and to keep less

intellectually oriented adolescents within the educational system where

academic progress may still be made. Similarly, the employment area has a significant impact on the

adolescent and his attitudes toward health, both indirectly and directly.

The unemployment or underemployment of parents can have a negative effect don adolescents. They may be forced to enter the labor market

prematurely to support their families and themselves, or may be needed at

home for domestic tasks while other family members work multiple shifts.

An unemployed or underemployed inoth or father also provides a very poor role modeL In addition, adolescents can react directly to a job market that discourages employment of teenagers or cannot absorb all

adults seeking work. If jobs are not available during the adolescent or adult years, the adolescent's motivation to study or to take other futureoriented action may be weakened_ A full employment policy has the

potential for significant impact on adolescent health-related behavior.

Health promotion for adolescents can take many forms. A challenging educational environment and a full employment policy have been

suggested; health education in schools, through youth-serving groups, during medical encounters, and through the ina. s media are others. The

school has the potential for reaching the largest number, but several

obstacles must be overcome before this is realized. One is the resistance of

school administrators and school boards to investing the resources in

energy, time, and money necessary for effective health education. In ayi era of "back to basics" and "competency-based" curricula, health

education may be perceived as a fringe activity. Clearly it is not. It can be

what makes other activities productive. School administrators and school boards are also reluctant to allow

schools to educate adolescents in controversial areas such as sex and

drugs. Fear of experimentation or of modifications of moral values, a

belief in the responsibility of the family in these areas, and similar well -

meaning motives underlie this reluctance. It is interesting that most public

opinion surveys indicate that parents are willing to have their children

receive informaton about sex and contraception in schools. The resistance

frequently encountered in communities, therefore, may have its sources in

a small but vocal group of parents, nonparents, and those who believe that

the proposed programs will not restrict themselves to the transmitting of

information, but will move into areas of personal values.

A final obstacle is the traditional methods of health education in

schools. Adolescents need to have information about the effect of their

lifestyles on their present and future health, but this information must be

presented in ways that arc likely to influence their attitudes and behavior.

General studies of adolescent health knowledge, as well as studies

focusing on areas such as tobacco use and sexual activity, suggest that the

vast majority of adolescents are not uninformed. They know smoking can

cause cancer. They know that unprotected intercourse may cause pregnancy. And they know that adequate diet, exercise, and rest are

essential for their health. There are areas in which their information is

300
inadequate and incorrect and should be augmented, but clearly provision of information is not the only or the most important need. Attitude and

behavior change is. seems possible that current attempts to change adolese "nt life styles do notuse the 1k:formation currently available on adolescent cognitive and psychological development. Future orientation is not a characteristic of

early adolescence. A catalog of "dos" and "don'ts" based on the impact of behavior on adult health status is unlikely to influence a 12-15-year-old. Nor are adolescents of any age eager to adopt a behavior at variance with

that of their peers. Methods need to be developed that make positive use of peer pressure rather than struggle against it. Adolescents' striving for independence and their distrust trust of authority figures can also be used to

strengthen programs. Fear will not motivate adolescents; enhancement of

seW-image wilL Didactic classroom preparations often do not make use of these

psychological facts. More informal classroom settings, materials that are relevant to adolesommt needs and concerns, instruction in decisiotunaking

techniques, use of peers both in the classroom and in informal sessions, peer counseling, and &titular methods need to be explored. Smoking

prevention programs in several cities have reported some success with

some of these nontraditional methods (35, 36), as have programs aimed at

preventing adolescent pregnancy (37). School personnel, including nurses, counselors,. and othas, need to be alerted to their opportunities for health education and provided with the training necessary for their utilization. Similar techniques should be incorporated into the programs of scouts, church youth groups, and other community-based, adolescent-oriented programs. These youth groups should both plan programs of health

education and utilize teachable moments.

The' content of a school based or youth group based program of health education will need to vary according to the age of the students and the preferences of the community. Areas that should receive serious consider- ation, however, include normal growth and development; the importance of nutrition and an adequate diet; healthy life styles including sufficient sleep and physical exercise; self-care including dental hygiene; home treatment of minor injuries and illnesses, and signs and symptoms that indicate the need to seek professional help; problems associated with smoking and alcohol and drug use, and how these habits can be avoided; fertility-related issues including human reproduction, family planning methods, and the prevention of venereal disease; and how to be an

intelligent consumer of medical services. It is urgent that parents be involved in planning health education programs. Their early input may prevent later opposition. Also, parents should be given opportunities to share in the information provided their adolescent children, through educational programs designed for the parents.and offered at their convenience, but covering some of the same material as the classroom or youth group. This not only allows them to check on what their children are being taught, but to discuss and possibly

reinforce the message at home. Health education programs should not be allowed to adopt a "disease of the week" approach, nor should a health education program depend on

311 301
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Education, and Welfare, and for the American Academy of Pediatrics, The following components are recommended: a medical history including

family medial history and past medical history of patient, review of early growth and development, review of immunization, systems review, developinental psychosocial history, and account of school progress; a physical examination; and laboratory tests. The Institute of Medicine

document (29) referred to earlier suggests the following services: at each

visit, history and physical examination including weight, height, develop- mental assessment, blood pressure, vision and hearing testing, screening

for scoliosis (girls, 9-10 years of age, or at first visit), and examination of skin; a serum cholesterol +=Lamination once between the ages 12 and 17; and tetanus and diptheria immunizations. The Institute of Medicine

suggests that cotmseling and referrals as necessary and desired be provided in the following areas: nutrition, hygiene, accident prevention, physical activity and exercise, alcohol and other drug use, cigarette

sanoking, family relations, social problems, sexual development and

adjustment, family planning wth contraception if appropriate, obesity, antecedents of adult disease, and other items in response to parental or

individual concerns.

Other comprehensive discussions on the content of adolescent examina- tions have been prepared by Haggerty (39) and the Health Care Financing Administration (40).

Routine Me Care

Early detection is also possible if the adolescent seeks care promptly for significant problems. The challenge in this area for the health field is multiple: to educate adolescents to recognize conditions that need

professional attention (to distinguish between the transitory and the permanent, between those things that can be treated by the educated lay

person and those that need a physician or nurse, etc.); to provide services

that arc easily reached; and to make these services acceptable to the

adolescent population. Adolescents need high-quality medical attention including diagnosis, treatment, and followup for a variety of problems. As the earlier review of studies indicated, upper respiratory ailments, digestive problems, skin

conditions, and similar relatively routine complaints can be anticipated. Injuries resulting from a variety of causes also will require treatment In

addition, adolescents with chronic conditions will be frequent visitors to

physicians and ambulatory care centers. Of special importance in the current era of increased sexual activity is

the detection and treatment of venereal disease. Many health departments have specialized clinics for these services, but many adolescents might feel more comfortable bringing their problem to a general adolescent health

facility. Supportive, sensitive care is required if both adolescents and their contacts are to be screened and treated.

936611Er. E. C. Unpubleybod documents.

303
This group of services can be provided in many settings. Private

physicians' offices, hospital outpatient departments, community health

centers, health maintenance organizations, school clinics, and others_ The

focus and the staffing of these facilities is important if they are to be used

effectively_ The adolescents' desire for confidentiality and their frequent

reluctance to use facilities that are child-oriented or adult-centered may

necessitate- the setting aside of special hours that are limited to adolescents, or the development of special adolescent facilities within larger

medical institutions, or separate medical facilities in nonmedical programs

for adolescents_ Some hospitals and community health centers have

organized separate adolescent clinics (22, 41). In other areas, buildings or

mobile vans provide services to adolescents only_ The best known model

of a multiservice center that provides a wide variety of services to

adolescents only is The Door in New York. The Door offers many types

of medical care including contraceptives, venereal disease testing, pregnancy testing, and abortion referrals; and a wide range of other services

such as education, recreation, and vocational training. For reasons similar

to those mentioned above, and because of the special problems of this age

group, specialists in adolescent medicine, including physicians, nurses,

and social workers may be needed to staff such facilities.

Dental Services

Dental services must be an integral part of a health maintenance

regime. Adolescents should be examined by a dental professional twice a

year and routine maintenance procedures such as cleaning and topical fluoride applications should be conducted, along with instruction in

brushing and flossing. Restorative care such as filling decayed teeth or replacing missing ones should be performed as needed. Given the

magnitude of the dental problems reported in most studies, much

adolescent dental treatment will involve treatment of conditions of long

duration as well as the maintenance of a healthy mouth.

The extent of dental neglect among adolescents is surprising considering their concern with their appearance. Undoubtedly one reason is the

shortage of dentists, particularly in areas with high concentrations of lowincome people such as inner city and rural areas. Other factors might be

the cost of such treatment (frequently not covered by insurance or

Medicaid), fear of pain, and a feeling of hopelessness in maintaining one's

teeth in good condition or keeping them at all. Often neither parents nor

adolescents realize the importance of dental care, and when money is

scarce, such care is neglected. Some adolescents need dental care of greater magnitude: bridges, periodontic treatments, and particularly orthodontics. These forms of

treatment, as with much dental care, are extremely income-related- While

many adolescents from middle- or high-income families endure, and

hopefully benefit from treatment of malocclusion and other similar

conditions, few low-income adolescents do_ It is unfortunate that

orthodontics frequently is viewed as a cosmetic or optional procedure. Its

role in preventing musculoskeletal, digestive, and other dental problems is

overlooked_ Nor should the importance of a normal appearing face be

304
underestimated. No adolescent should be forced to face his peers or the world of work with missing anterior or premolar teeth, a pronounced overbite or underbite, or similar disfigurations that are amenable to

treatment The long-term emotional and occupational consequences are potentially more costly than treatment. In the dental area the need for specialized facilities and personnel seems

less urgent than in the medical one. Adolescents generally do not want to be treated in facilities designed for children and may not physically fit in

them, but there appears to be no strong objection to treatment in adult facilities. Special adolescent personnel are not advocated, although

dentists and other dental personnel whose practices contain large numbers of adolescents should be cognizant of the emotional and psychological needs of their patients. Postgraduate programs in orthodontics and

pedodontics already address these issues.

Other Health Services

Certain specialized services may not be needed by all adolescents but should be available to those who need them. They include emergency

services, fertility-related services, and services for emotional and psychological problems.

Erssergesacy Services

The incidence of trauma among adolescents as well as emergencies associated with drug use suggest that emergency treatment at one time or another is needed by many adolescents. The trauma may be due to motor vehicle, bicycling, or skateboard accidents; to firearms or other weapons; to suicide attempts by wrist slashing, falls, guns, or ingestion; or to

participation in athletics. Overdoses of a variety of mood-altering drugs may also require emergency intervention. These types of treatment do not need specialized facilities. A well- organized hospital emergency room should be able to manage them. But if adolescent patients are seen in significant numbers, the medical and nursing staff should be knowledgeable about their emotional and

psychological needs. Consideration of adolescents' desire for privacy, their ambivalent relationships with their parents, their dependence on peer support, and their anxieties regarding bodily image will make them better able to respond positively to treatment Adolescent may use a variety of crisis centers. The personnel in such

facilities, including peer counselors, should receive adequate train'Ag.

Fertility-Related Services

Although some adolescents will opt for abstinence and others success- fully manage active sexual lives without assistance, most will need

counseling and services. Adolescents should be able to discuss their

feelings about sexual activity, its initiation, continuation, frequency, and

protection from 1::-egnancy and venereal disease with individuals knowl305

31 5
edgeable in these areas. This may be a family physician or pediatrician

(42), a health center or school nurse, or a school teacher or counselor. Not

all of these individuals feel comfortable in this activity and their

discomfort is conveyed to the adolescent. Professionals who deal with

adolescents in many capacities, from guidance counselor to swimming

coach, need specialized training in dealing with fertility-related issues. If

they believe they cannot accept responsibility in this area, at least they

should know where to refer adolescents who need such help. Family

planning clinics usually have personnel with adequate preparation for this

activity. The needs of adolescent males should not be ignored and male

counselors should be made available.

For that increasing percentage of adolescents who choose to become

sexually active, easy access to contraceptive devices is an urgent need.

Although condoms now can be purchased in many supermarkets and drug

stores, some adolescent boys and probably most adolescent girls are

embarrassed to show their purchase to a cashier, who may also be an

adolescent or neighbor. Other countries make condoms available through dispensing machines in schools and other places where adolescents

congregate. Many advocate a similar practice for this country. While some methods of female contraception are available in markets

without prescription, female adolescents for whom the diaphragm, pill, or

intrauterine device are appropriate must have available medically based

facilities. Physicians in private practice or in general adolescent medical facilities will provide these materials to some adolescents, but many

youths will turn to specialized family planning programs in health

departments, Planned Parenthood affiliates, and hospitals. This is another

service in which adolescents may have to be treated separately. Some

adolescents will be reluctant to use a family planning service frequented

by older women, out of embarrassment or fear of disclosure. Therefore

separate times should be set aside for adolescent patients, making certain

they do not conflict with school attendance. Judgmental attitudes on the

part of personnel serving adolescents may also lead to nonutilization.

Only those who feel comfortable with the reality of adolescent sexuality

should staff family planning services catering to adolescents. Finally, State

laws limiting the prescription of contraceptive devices to minors or

requiring parental consent should be eliminated. While adolescents can

benefit from the advice and support of parents, and providers of fertilityrelated services should encourage parental involvement, research suggests

that a substantial number of teenagers would not seek such services if they

were required to inform their parents (43). Transportation, language, and

financial barriers also need consideration and elimination, if possible.

Services for Emotional or Psychological Problems

During their transit through the difficult years of adolescence, many

basically healthy youths will exhibit signs of emotional disturbance or

psychological maladjustment Rapid intervention and short-term therapy

may prevent most of these conditions from becoming severe or chronic. A

range of services should be available to assist adolescents with these types

306 31 6
of problems. Hotlines staffed by peers or adult counselors trained to

respond to adolescent problems are one essential component. Drop-in

centers staffed by peers or adults are another. Both will deal primarily with crisis situations.

Some adolescents, however, will need short-term therapy to deal with

their problems. Since few families have the financial resources to pay for private care and many adolescents may be reluctant to seek care if it

means dependence on parents or making parents aware of their problems, specialized publicly funded facilities probably are needed. These may be

in community mental health centers, youth guidance clinics, community

health centers, or private agencies. This type of service in particular needs

personnelpsychiatrists, psychologists, social workers, and psychiatric nurseswith specialized adolescent training.

HEALTH SERVICES FOR ADOLESCENT

POPULATIONS WITH SPECIAL NEEDS

All of the services described in the preceding pages are either needed by

all adolescents or should be available to all adolescents who need them.

The following sections will focus on services needed by subpopulations of adeleicents whose special needs are a result of special health problems or

residence outside of the family home, often with the State or an agency

assuming parental responsibilities.

Services for Pregnant Adolescents

With over 200,000 females 12-17 years of age delivering every year and

an almost equal number becoming pregnant but not carrying tc. term because of miscarriage or induced abortion, services for pregnant adolescents and young parents are crucial. Pregnancy testing should be an important component of any adolescent health service. Testing should be easy to obtain, physically, financially, and psychologically, since it is imperative that prenatal care or an

abortion be sought as early as possible. Once the pregnancy has been confirmed the adolescent needs assistance

to enable her to make a decision about its outcome: to carry to term and

raise the infant, to carry to term and release for adoption, or to abort. She

should have available counseling about the advantages and disadvantages of each of these alternatives.

Should her decision be to abort, this service should be open to her. Two obstacles currently add to the many psychological problems, including

fear and guilt, associated with this decision: the controversial requirement for parental notification or consent in many States (43), and financing. The Hyde Amendment makes it impossible to use Federal Medicaid funds

for abortions and many States have similar restrictive policies. Although many individuals find abortion an unacceptable method of family

planning, there are some medical and psychiatric circumstances under which it may be the best alternative. More importantly, social policy for

317 307 .
the financially advantaged should not be different from social policy for

the financially disadvantagedwhich is clearly the present situation. Should the adolescent decide to carry to term and release for adoption,

she should be referred to an agency that handles this procedure. Adoption

is probably as difficult a decision for a young person as abortion, and in

both cases counseling should be available so that the adolescent need not

carry a burden of guilt and misgiving for many years.

For the adolescents who choose parenthood, whether single or married,

a wide spectrum of medical, educational, and social services will be

required during both the prenatal and the postpartum period.") Most adolescents probably will seek medical attention in the office of an

obstetrician or general practitioner. Payment for such care may be a

problem if the family does not have adequate financial resources or an

insurance policy that covers maternity services for dependents, or if the

family has rejected the adolescent. Unfortunately, in many States Medicaid will not pay for prenatal care and delivery for young women

who are not on welfare, even though the mother and child will be eligible

for Aid to Dependent Children once the child is born. In other States the

reimbursement levels are so low that many physicians will not accept

Medicaid patients. Both conditions should be corrected and adequate

third-party payment for prenatal care should generally be encouraged. In some communities there are several alternatives to the private

physician's office, including hospital ambulatory care centers, health

department clinics, Maternity and Infant Care Projects, and community

health centers. Such facilities should operate special sessions exclusively

for adolescents under 18. These should be conducted after school hours,

and employ only physicians, nurse-midwives, nurses, and other staff;

including clerical personnel, who enjoy young people and who are not

judgmental. Sufficient time must be allowed for explaining procedures before and after they are done and for sensitive listening to the

adolescents' doubts and fears. Educational programs that help the

adolescent understand her body's needs and changes during pregnancy,

the process of labor and delivery itself, and what she can expect in the

immediate postpartum period are essential. These may be offered by the

same institution that provides the medical care or they may be offered

collaboratively with a school or social agency also involved in serving the

pregnant adolescent. Nutritional information and counseling certainly

should be part of such an educational program, if low infant birth weights

are to be avoided and the child is to be adequately nourished through the

first year of life (4S). Unfortunately even the best medical program is of little assistance to

the pregnant adolescent who does not seek care. Eliminating financial

barriers, making facilifies easily accessible in terms of time and place, and

making them inviting by employing sympathetic personnel are essential

steps in reducing the present tragically high rates of late care seeking

among adolescents. These activities must be augmented by aggressive

outreach. Pregnancy should automatically be suspected when a female

"Portions of this section are adapted from a talk delivered by the author at a conference on Adolescent

Pregnancy conducted by the University of PittsburghGraduate School of 'Public Health (44).

308 318
student indicates that she wishes to drop out of school, and questions should be asked discreetly. It should also be suspected when there is a gradual or a sudden increase in absences or in trips to the nurse's office. Youth-serving organizations such as settlement houses and church groups can also play a, role in early detection of pregnancy. For the adolescent who has not completed her education, there is a need

for specialized educational services during the prenatal period and often for several months after delivery. These services run the gamut from homebound instruction for the young woman who is physically or emotionally unable to leave home, through specialized schools and special classrooms, to regular classrooms with minor schedule modifications for the young woman who is stable and can benefit from the wealth of

resources available in many schools. Although "mainstreaming" and placing the pregnant adolescent in the "least restrictive environment" that she can tolerate should be the dominant educational policy, specialized schools have advantages. In addition to providing the most suitable setting for those with physical, emotional, or academic problems, such schools can also provide a variety of nontraditional services that can make life easier for the pregnant adolescent. For example, many specialized schools provide nutritionally

adequate breakfasts and lunches; some run prenatal care clinics on their premises; others organize group counseling sessions that allow the young women to gain insight into why they became pregnant, their relationships with their families, boyfriends, and peers, and what the future may hold. Special educational classes may be offered or required in areas such as

family planning, child care, household management, or infant develop- ment.

Vocational counseling is an essential educational service during the prenatal period. While it is unrealistic to expect a young mother with a preschool child to support herself, the prenatal period is not too soon to

begin considering how the mother will support herself and her child when

the child spends 5 to 7 hours a day in school. In addition to medical care and education, pregnant adolescents need

social services. Specialized types of counseling are needed on abortion, adoption, medical care, housing, and educational and vocational choices. More intensive social services are needed by a small fraction of

adolescents for whom the pregnancy is pathological; that is, a manifesta- tion of a severe psychological disorder, a reaction to an unhealthy, conflictive family situation, or the result of an inability to deal with peers. These young women need casework or assistance from a psychologist or psychiatrist if they are to make wise decisions during the pregnancy; and

if they choose parenthood, to provide a healthy environment for the new

baby. Agency staff need to be alert to the signs and signals of the pregnant adolescent who needs psychological treatment Many families will also require casework services, brief or extended, in order to be able to provide support to their daughters. Since the

adolescent's family is going to be around long after the adolescent ceases

her agency contact, helping to solve the family's psychological problems is as urgent as helping to solve the adolescent's. Social services may be made available to the male partner depending on the female's wishes and the

309 319
agency's resources. The needs of y ounger female siblings should also be

considered if additional adolescent pregnancies are to be avoided.

Services to the pregnant adolescent should not terminate at delivery or

in the weeks or months following. The 2-3 years following the infant's

birth may be crucial to the mother and her child's life. A program of home

visiting during the postpartum period by public health nurses, outreach

workers, or social workers will assist the young mother in maintaining a

contraceptive regime, completing her education and vocational preparation, and caring for her health and that of her infant. The availability of

infant day care may prove a crucial factor in her ability to prepare for the

future.

Services for the Emotionally Disturbed

or Mentally Ill

In a previous section services for adolescents in crisis or with transient

emotional problems were reviewed. Unfortunately, some adolescents have

more serious and enduring problems that require long-term therapy on an

outpatient basis, a medication regime, specialized educational programs,

and even hospitalization. Special adolescent concerns in outpatient

therapy have already been discussed. The situation is paralleled in an

inpatient setting but is not as easy to rectify.

Adolescents need, a range of residential services including therapeutically oriented residential care centers and schools, less intensive long-term

residential schools or camps, group homes, and halfway houses, as well as

intensive, short-term inpatient facilities. It is generally agreed that

adolescents should not be placed on children's wards nor on adult wards

in psychiatric facilities. In the former they may victimize or frighten

younger children, while in the latter they may be frightened or victimized

or do violence to weaker patients. Placing many emotionally disturbed or

mentally ill adolescents on the same ward, however, often leads to violent

behavior; therefore some institutions choose to disaggregate the adolescents to protect the adolescents and the institution, despite the fact that

this may not maximize therapeutic effectiveness. A wiser solution would

be all-adolescent wards with limited numbers on each ward and a high

personnel-patient ratio. In addition to psychiatric services, educational and recreational services

should be provided that are appropriate tc the adolescent's age, developmental stage, and previous educational attainment. Public Law 94-142

and various State laws and court decisions regarding the right to

education and the least restrictive environment, if properly enforced,

should prod more institutions to offer these nonmedical but essential

services. Nor should traditional medical services be ignored; provisions

should be made for the prevention, diagnosis, and treatment of medical

conditions in all residential facilities.

Many areas suffer from a lack of facilities rot emotionally disturbed or

mentally ill youths and such children either rt-mo in en the streets, a danger

to themselves and others, or are placed in less therapeutically oriented

institutions such as jails or training schools. Although inpatient psychiat310
ric facilities should not be allowed to become "dumping grounds" for the deviants who are not mentally ill, they should be available in sufficient number to care for those with serious psychiatric problems. Two subgroups within this population deserve special attention: the

agressive, acting-out, occasionally violent adolescent and the substance

abuser. Although infrequently mentally ill, such youths are emotionally disturbed. Some communities have developed a variety of specialized programs for the first group. These include specialized schools (46), frequently with behat.or modification programs (47), specialized counseling, and other services. Unfortunately in many areas these adolescents are bounced back and forth between parents, courts, police, welfare depart- ments, schools, and other agencies, none of whom appear able to manage

theta. Eventually they are sent to institutions or die violent deaths. The need for secure facilities for some of these youths is hotly debated because of both civil rights issues and costs. Probably a few adolescents may need

such care, but a range of alternative services to avoid such facilities clearly

is more desirable.

Adolescent alcohol abuse may range from infrequent binge drinking to

serious problem drinking. Intervention is required when alcohol interferes with academic work, operation of a motor vehicle, relations with peers or parents, or causes other problems. Services may include individual or group counseling by peers or adults, individual or group psychotherapy, and emergency treatment. Drug use in adolescents, although more frowned upon by society than

drinking, less frequently leads to adult addiction (15). Nevertheless, it can

cause significant problems in the adolescent years. Again, a range of services is needed: counseling, psychotherapy, emergency treatment, and

for a few, residential treatment.

Services for Athletes

Large numbers of adolescents engage in strenuous athletics and, while

this was once an almost exclusively male arena, females are entering it in

increasing numbers. Special attention needs to be paid to the prevention

and treatment of sports- related injuries. Periodic examinations of athletes

is one component of a sports medicine program. Others include adequate preparation for competitive sports; prohibition of participation in athletic activities inappropriate for physical and emotional developmental stage; availability of personnel trained to deal with emergencies in contact sports and in other activities with a high risk factor such as skiing or riding; prompt treatment of injuries; and strong rehabilitation programs (48).

Services for Adolescents No Longer

in Parental Homes

A sizable number of adolescents no longer reside with their parents by

their own choice, their parents' wishes, or the decision of a public or

311
private agency. Providing health services to these youths is an important

issue and one often overlooked.

Runaways and Street Odidren

Health-related programs for youths who have run away from home or have been "thrown out," for young prostitutes, and for other street children are a particular challenge to the health professional. Their health problems frequently are myriad, ranging from acne and colds to

pregnancies (49), venereal disease, and drug addiction, and yet they are

the least likely to seek assistance because of fear of prosecution, resistance

to being returned home, and a distrust of adults. When a health-related

crisis occurs, they seek help in the least personal facilities where their desire to remain anonymous may be granted: hospital emergency rooms and outpatient clinics. Such facilities seldom review or serve the total needs of the adolescent and arc even less likely to followup to determine

compliance with recommendations. Some cities have developed alternative facilities that, while sensitive to the street youth's desire for anonymity. nevertheless are able to develop a sense of trust that enables

them to provide help beyond the immediate crisis situation and thus to keep at least some percentage of their clients in care long enough to

ameliorate their physical health problems, although not usually their psychological ones. Most large urban centers probably need specialized programs for these youths: outreach workers to frequent the streets and other areas where

street youths congregate and let them know of the availability of services,

ambulatory care centers that are easily available and provide assistance with a minimum of personal questions, and residential facilities for those needing care or protection_

Residents of Institutions

When a public agency assumes the responsibilities of a parent, as it must in most cases when an adolescent is placed in a detention center, jail, reformatory, training school, school for the retarded, or other residential facility, the maintenance and even the improvement of the youth's health

should be among its functions. However, studies of institutionalized

populations frequently reveal deplorable environmental conditions and

medical services of inferior quality. This is particularly unfortunate because such institutions usually draw disproportionately from the

economically deprived segments of the population whose health most often is substandard before institutionalization. The service needs of this

population may be greater than those of most adolescents, and special attention may need to be paid to psychological and contraception

services. A complete medical assessment upon institutionalization should

be required along with treatment for all conditions discovered. The unique problem is how to deliver the services. Institutionalized adolescents cannot reach the services they need without assistance and may be

312

322
unwilling to use community facilities if they are stigmatized as coming

from an r7.:4it.utien Thus, in most cases, the services must be brought to

them. they may be reluctant to use such services effectively since

any ac ..; iti - the institution may be seen as the enemy. To be effective, health , - must separate themselves from other institutional persona 4 and attempt to convince adolescents that medical confidentiality will tic maintained despite the setting. The maintenance of high-quality

care in an institution that frequently pays poorly and is isolated from

professional review is often very difficult.

Adolescents in Foster Care or Group Homes

In this situation as well, the agency that assumes responsibility for placing adolescents should assume responsibility for their health needs. Unfortunately this is not always the case. Since youths in these settings usually are not physically restricted, they and those responsible for them

can seek care from the usual community facilities. Other needs and

problems, however, frequently take precedence especially since a prior medical history may not be available and adolescents may be reluctant to discuss their problems. Also, the funds provided for the care of the

adolescent may not be sufficient to obtain necessary medical care. These

situations require careful monitoring by the agency responsible for the child's placement Before placement a complete health assessment

including physical, psychological, and social components should be mandated_ Periodic checks to determine that essential care is received and

that the child is adjt.sting well should be made during the placement period.. Counseling and other therapies should be available if needed. The cooperation of the foster parent or the director of the group home and the adolescent should be encouraged, but this does not obviate the need for agency monitoring of compliance to promote the child's physical and mental health. In addition, the adolescent's psychological well-being will undoubtedly be improved if plans are made and implemented for their

long-term dispositionwith the adolescent participating in the planning.

Hospitalized Adolescents

Although rates of hospitalization arc not high among adolescents. youths hospitalized for more than a few days of inpatient treatment for medical or surgical conditions of acute or chronic nature require

specialized services. As increasing numbers of children with chronic

illnesses or handicapping conditions live into adolescence, more and

better adolescent units are needed. Adolescent wards are recommended

rather than pediatric or adult services. Such wards can be staffed by

personnel specifically trained in adolescent medicine, and they permit the

social interaction so essential to adolescent psychological health. Educational and recreational programs are essential if the adolescent's develop- ment is to continue during his or her period of hospitalization. A special adolescent ward makes such programming easier.

313 323
PROBLEMS IN THE PROVISION

OF SERVICES

Many of the problems that have been faced in providing services to

adolescents and that can be anticipated in the future have been reviewed

in early sections. In this section they will be grouped and summarized.

Adolescent Needs Versus Parental

Prerogatives

Adolescents do not always receive the services they need because they

are reluctant, for a variety of reasons, to seek them themselves. Yet they will no longer allow parents to make these decisions for them. This problem is less crucial in early adolescence but usually increases with age. Shame, fear, and fatalistic or irresponsible attitudes are factors in

adolescent avoidance of health services that are difficult to overcome.

Another factor, desire for privacy and confidentiality, should be easier to

accommodate, although it may conflict with normal parental wishes to know about their children's problems so that they can help them. This problem is further complicated in some States by laws requiring parental consent for treatment of certain medical and emotional conditions, provision of contraceptives, abortions, and other services (50). This

problem will not be resolved easily or quickly (51). One possible solution is to substitute professional judgment for legal requirements. Physicians, nurses, social workers, and others would be

instructed to urge adolescents to inform their parents of their health needs and the services they were requesting. If they refused, and the professional believed that they had good reason for refusing or that their health might be more jeopardized by informing the parent and thereby possibly causing

the youths to avoid care, the professional would have the option of providing services without parental notification or permission. Such a step obviously should not be taken without consideration of all factors, and unobtrusive assessments of the family situation by social workers or outreach personnel might be needed.

Financing

The field of adolescent health suffers from the general underfinancing of services for nonvoting and nonvocal groups. The general public's perception of the adolescent years as healthy ones leads to their receiving

a small share of even the funds available for children; frr example, adolescents are often the last group sought in Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) programs. But there is another financing problem unique to the adolescent group, their dependence on parental financing even when they seek care

independently. Some adolescents are deterred from seeking care because

the providers will request their parents' insurance or Medicaid card as assurance of payment. Later, in most cases, the parents will be notified

314
that a specific type of care was received. Even when adolescents are issued

their own cards, notification usually follows. This makes it impossible to

conceal the receipt of service from the family. This is another situation where professional judgment might be substituted for automatic proce- dures. It should be possible for an adolescent to request that notification not be sent, and to have his or her wishes respected if the attending

professional feels that the request is reasonable. The problem remains of obtaining services if one is poor and not covered by private insurance or Medicaid, or obtaining health promotion, disease prevention or detection, or other services that are often not covered by private plans or Medicaid. This problem is not unique to

adolescents or even to children and pregnant women, but rather covers both sexes and the entire age span. It needs to be addressed through a

comprehensive national health plan that does not exclude certain groups or certain services.

Payment for health assessments performed on adolescents has problems beyond the fact that most third-party payers do not cover this type of preventive service. An adequate assessment of an adolescent, such as has been described in earlier sections, can easily take 30 minutes or more. This

is considerably more time than the pediatrician devotes to periodic

assessments of infants or young children and may even be longer than an

internist spends with an older patient. Reimbursement for adolescent visits at the same rate as visits of younger or older patients, therefore, will not encourage physicians to perform the assessment tasks. A fee related to

the investment of time and psychic energy is needed.

Organization of Services

Services for adolescents can be provided in traditional settings: physicians' offices, community health centers, hospitals, and others. Frequently, however, in a sensitive area such as reproductive health, special hours must be set aside to segregate the adolescents from others, special wards must be organized, and specially trained personnel must be employed. Because of the problems involved in making such arrange- ments, and the increased costs often associated with them, these

arrangements are often controversial. Nontraditional settings may be equally controversial. The use of mobile vans or storefronts may cause concern to personnel accustomed to more

traditional medical ,settings. Similarly, the inclusion of health-related

services in settings usually associated with recreational or other functions, such as settlement houses, may be uncomfortable for personnel used to

the authoritative structure of medical settings and the back-up services such settings can provide. Such nontraditional settings may also be

associated with additional expenses because they will not permit the

economies of scale associated with traditional settings. In addition, special hours, special facilities, and special personnel may be viewed by the general public, and even by health professionals as "molly coddling," giving in to the demands of adolescents, spoiling them. These attitudes may surface particularly when the services are needed in connection with

3l5
a deviant, socially disapproved activity: sexual intercourse, drug or alcohol abuse, or running away. Another organizational issue is determining the most cost effective way

to deliver health services to adolescents. One model is an adolescent

facility that provides a wide range of services: care for medical conditions, contraceptive services, and programs for the emotionally disturbed, to

name a few. Alternatively, a specialized service can be made available to a wide spectrum of age groups, among them adolescents. A Planned Parenthood center would be an example of such a model, providing

contraceptive services to women in all the childbearing ages, with

adolescents being served at special times. The role of the schools in the promotion of child health, including that of adolescents is of particular interest currently because of the new

attention being devoted to health education, and the experimental programs supported by the Robert Wood Johnson Foundation. The potential role of the schools in health promotion through a variety of educational programs, some of them in controversial areas, already has been discussec. In some of the experimental programs school nurse practitioners are doing health assessments and, in conjunction with school physicians, providing treatment or referring adolescents for care else- where. Since a very large proportion of the adolescent population is in

school, this would appear to be a very effective way of providing care. Resistance can be anticipated from the medical profession, which may see an expanded school health program as competing with private practice, and from school boards and public officials who may think such a program is an expensive frill to be eliminated in times of financial constraint. In addition, the adolescent students themselves may believe, frequently correctly, that school records, even medical records, are open

to teachers, administrator- and parents; and that school nurses owe their allegiance to the schools rather than to the patient. Both of these

suspicions would lead to the conclusion that privacy and confidentiality

are impossible in the school setting and that problems of that nature

should be taken elsewhere. Before school nurse practitioner or other school-based health programs targeted at adolescents can be effective, these issues will have to be faced and solved through regulations and the development of trust.

Personnel

Throughout these sections there has been continued reference to the need for personnel specially trained to understand and treat the problems of adolescents. This recommendation has its own problems. The Future of Pediatric Education, a report by the Task Force on Pediatric Education

(52) listed adolescent medicine as one of the most significant areas in which the educational content of many residency programs was inade- quate- The report stated that more than 17 percent of patients seen by

pediatricians were 13 years of age or older and that pediatricians were now the primary care physicians for a quarter of all adolescents. It also noted that almost 70 percent of recent graduates of pediatric residency

316
voted their in this area as insufficient Expansion of the event component of tric residencies is strongly advocated in the report (53). Other professionals such as midlevel medical practitioners, psycholo- gist% social workers, nurses, and others also need training in the adolescent field. The Office for Maternal and Child Health of the Public Health Service supports nine adolescent interdisciplinary training projects at institutions of higher learning. If facilities for the treatment of adolescent health needs are to be

a much larger pool of trained professionals will be needed. This Mialirequire a coniznitment from the health professions and the Federal Government.

Controversy Surrounding Health Macadam

Health education particularly in sexual and drug abuse-related areas may be very controversial. The effectiveness of many traditional methods has not been proved and the results ofnewer methods are just beginning to be reported. Moreover, parents and others fear that the provision of information in

these-areas may in itself lead to experimentation. There is some evidence that this is true in the drug field and clearly new methods must be found that avoid this danger. In the area of sex education, studies have shown

that contraceptive use may follow the initiation of sexual activity by a year or more. It seems unlikely, therefore, that information about contraceptives can cause sexual experimentation. In this section on problems in the provision of services, attention has been focused on problems unique to the adolescent years. This should not be interpreted as signifying that adolescents are exempt from the problems that plague all health services for children: inadequate financing, discrimination against the poor and minorities, unequal distribution of services leading to inadequate services in rural areas and some inner cities, fragmentation, and the absence ofa system that assumes responsibility for child health or a policy that suggests that this is important

CONCLUSION

The health-related needs of the adolescent are receiving increasing

attention from the Federal Government and the general public. This new prominence can provide an opportunity to take a fresh look at this

population and its very special needs. It is hoped that what will emerge is a program devoted to an entire range of services for adolescents rather

than a series of services targeted at individual problems.

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(49) Perlman, S. B. "Pregnancy and Parenting Among Runaway Girls." Journal of Family Issues 1:

262-273, June 1980i

(50) Steinfels, M. 0. -Ethical and Legal Issues in Teenage Pregnancies.' In T. Ooms, ed., Teenage

Prqpsancy in a Family Constar& Implications for Policy. Philadelphia: Temple Univ=sity Press, in

press.

(51) Hoffman_ Adell. "A Rational Policy Toward C.oesent and Confidentiality in Adolescent Health

Care.." Journal of Adolescent Health Care 1(1), 1980-

(52) The Task Force on Pediatric Education. The Future of Pediatric Education. Evanston, 111, 1978.

(53) Cohn.. AL I. "Importance,. Implementation and Impact of the Adolescent Medicine Components of

the Report of the Task Force on Pediatric Education?* Mimeographed paper available from Dr.

Cohen, Montefiore Hospital, Bronx, N.Y.

.329 319
HEALTH CARE FOR

CHRONICALLY DISABLED

CHILDREN AND

THEIR FAMILIES

by HENRY IREYS, Ph.D.*

INTRODUCTION

The handic. appal children of this country constitute a minority group whose needs the Nation's health care system has neglected. To meet handicapped children's requirements for health carebroadly defined

requires medical, psychological, social, and educational services: -Short- comings in any one of these areassuch as the well documented

inadequacies in the medical care delivery system for children (I, 2, 3)

particularly hinder children with chronic disorders_ Handicapped children

also suffer from the inability of the service agencies to coordinate their efforts or to work closely with families in setting priorities and developing plans for care. Furthermore, the costs of care for handicapped children

can be very high (4), and family assistance from public and private programs is inconsistent and generally inadequate (5). Finally, both

health care professionals and society in general have systematically, although unintentionally, discriminated against these children and their fames (6). The number of handicapped children is large: 7.2-10.8 million American children (10-15 percent of all children

under 18) have some type of chronic impairment 1-2_8 million children have conditions sufficiently severe to Emit

their daily activities significantly The burdens on these children and their families can be enormous: the

continuing high costs for health care services not covered. by public or private insurance; the physical problems of nagging pain or continued discomfort; the emotional stress of feeling "different," dependent, and

unworthy; the pervasive social stigma; and the frustration of finding no

consistent network of support.

°Post Doctoral Felkow. Cosier for the Study of Families and Children. Vanderbilt lastilute for Public Polfscy Studies.

321
Recently, a greater recognition of the civil rights of handicapped

individuals and an emphasis on "holistic health" have brought many positive changes for these children and their families, including new

legislation (The Education for All Handicapped Children Act of 1975,

PI- 94-142), such new programs as Direction -Service Centers of the

National Association of State Directors of Special Education, 1979, and

efforts to gain new knowledge (7). However, these developments are still

in their infancy and will need nurturing_

Definitions

In this paper, a chronically disabling or handicapping condition is

defined as any mental or physical disorder that continually or repeatedly

threatens to disrupt normal development in the physical, intellectual,

emotional, or social sphere. Many of the conditions subsumed under this

definition are listed (7) in Appendix A. Based on this typology, the term

"chronic disability" includes such conditions as mental retardation and

severe psychiatric disturbances,' as well as such physical diseases as

leukemia, sickle cell anemia, and muscular dystrophy. The terms "handicapped" and "disabled" are used interchangeably.

Both, however, are distinguished from "illness," which refers to an

ongoing disease process, such as diabetes. The terms handicapped and

disabled refer to the effects of a disease process, birth defect (e.g., a cleft

lip), or accident (e.g., loss of limb). Chronic "conditions" and "disorders"

are both used generically, to refer to the full range of chronic health

problems. The term "catastrophic condition" denotes a particularly

severe, unstable, and costly chronic disorder.

"Medical treatment" includes those activities designed to ameliorate

strictly physical conditionssuch as the prescription of drugs, surgical

procedures, and the fitting of prostheses_ "Management of care" refers to

a broader range of activities, including those that help children adapt to

their conditions and demonstrate a reasonable degree of compliance with medical treatment. "Health care" is a generic term for all activities

designed to promote adaptive physical, psychological, or behavioral functioning. Thus, this term includes not only medical care, but also

psychological support, proper educational placement, and health promotion and %.unease prevention programs.

The Context of Chronic Conditions of Childhood

This paper is based on three assumptions concerning the most useful and appropriate contexts in which to consider the chronic conditions of

childhood_ First, services for handicapped children are largely based on need as perceived by a variety of health care professionals, all of whom

are influenced by their training, by political and economic pressures, and

!For a discussion of the problem of mental illness in children. see -Reflections on Maternal and Child

Health Programs; Chapter VII. in this volume.

322 331
by generally accepted attitudes toward handicapped children. Conse- quently, when new health care needs arise or when needs are newly

recognized, the health care system is likely to respond slowly because of entrenched habits and domini t professional interests (8). Thus, substantive changes in the health care system for handicapped children

are likely to occur only with substantive changes in the habits of health

care providers. An estimated 2.3 percent of all children live in long-term residential

institutions (9,10); the majority of these children are profoundly mentally

retarded, multiliandicapped, or severely emotionally disturbed. Because very few children who are mildly mentally retarded, strictly physically ill, or disabled live outside of a family, this paper's second assumption is that a disabled child's family should be actively involved in decisions about treatment and rnAriagernent. Health care services for handicapped

children may not even be effective "unless there is greater recognition of

the family context in which children live, and through which social programs must operate" (11). If a family establishes a supportive and

encouraging atmosphere, the disabled child's chances of developing

adaptive patterns of living are vastly improved. The paper's third assumption is that the handicapped child is foremost a growing individual who will move through predictable developmental stages and, like all children, will have to confront certain tasks. Successful adjustment to a chronic disabling condition requires accomplishing these

tasks and managing the transition from one to the next despite the

limitations imposed by the handicap.

BURDEN OF ILLNESS

Because the Nation's birthrate has been on a slight upswing recently, the number of chronically handicapped children will increase during the next decade. Estimates of the percentage c' the childhood population now

chronically handicapped vary greatly, depending on the definition of handicap and the source of the information on extent of handicap. No

national health survey has included questions that would allow direct estimates of the incidence or prevalence of chronic handicaps. However, several small-scale surveys permit indirect estimates, and some national survey data are available for selected conditions (table Estimates cf the prevalence of chronic physical illness among American

children range between 6 and 20 percent of the total population (12, 13, 14, 15). Mild and severe mental retardation affects about 3.4 percent of

the Nation's children, and the major psychiatric conditions affect perhaps 5 to 15 percent of the population (16). Taking into account that multihandicapped children may have been counted more than once, the percentage of chronically handicapped children (including those with

severe psychiatric disorders) is estimated to be between 10 and 15 percent of children, a figure that roughly corresponds to the 12 percent used in The Education for All Handicapped Children Act, P.L. 94-142. Moreover, the extent of the limitations caused by handicapping

conditions cannot be assessed readily. As illustrated in table 2, several

323

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TABLE 2. Severtity of Chronic Disorders (percentage of cationic cases)

Survey Hawaiian Severity of Is of Rochester, Birth Mehl ility U.K. Melon' Might* osiisctsa

None or

mild

54 45 37 46

Moderate 34 39 50 38

Severe 12 15 13 17

Pleas and Roghenann. 1971. zWernar, Bisnnan, and French. 1971.

TABLE 3. Children and Youth tingled in ActivNy

Percent of Children and

Youth Limnos. in Activity

AN Ages Under 18 3.8

Under 6 24

6-11 4.0

12-17 4.7

12-15 4.5

16-17 5.1

Family Income Under 35.000 52

$55,000-39.999 4.1

310.000-314.999

r 5,000 or more 3.4

Race

White 3.8

Black 3.6

SOURCE: Volume 18 of this report. table 52.

studies show that most children with chronic disorders have mild to

moderate disability, with 12 to 17 percent facing severe disability (14)(17). Although for some chronic conditions, such as sensory disorders or mental retardation, objective methods can establish the degree of severity; measurements of severity for other conditions have not been developed or arc not widely accepted. These estimates of severity are important for policymakin' g, especially for establishing which children are most in need

of services, and more empirical work is needed in this area. Consistent with trends in the general health care of children, handi- capped children in families with low incomes tend to have greater needs. For example, although "asthma is a major burden for any family, its toll on low income families is even greater. Thus, although asthma seems to be distributed evenly among various social classes, several surveys have

found higher rates of severe asthma among lower socioeconomic status

families." (4). As table 3 shows, the percentage of children limited in

activity is also higher in families with low incomes.

325

334
Indices of Health Status

Longevity

Only a few chronic conditions are likely to cause death in childhood.

Malignancies (primarily leukemia) and congenital malformations account

for the largest percentage of childhood deaths, excluding injuries (table 4).

Nevertheless, some chronic conditions appearing in childhood do shorten

life expectancy markedly, resulting in death in the twenties or early thirties

(15). The quality of life for these young adults depends in large measure

on how well they have learned to live with their conditions during

childhood and adolescence. Unfortunately, little empirical information is available on the functioning of adults who were handicapped in

childhood.

TAME 4. Causes of Chldliood Deellus

Cause of Death 1-17 1-6 140

6-11 12-17 12-15 16-17

Number of deaths per 10,000 population

All causes 6.4 3.1 6.0 4.4 9.1

Accidents and violence 2.9 1.6 42 2.7 7.0

Diseases and conditions 3.4 1.5 1.8 1.6 2.

Percent of deaths due to specific causes

AN causes 100.0 100.0 100.0 100.0 100_0 100.0

Accidents and violence 58.4 46.1 51.3 69.9 62.5 76.8

Accidents 50.0 41.1 49.7 56.5 52.5 60.4

Suicide 2.6 - .3 5.4 4.0 6.7

Homicide 4.6 3.4 2.4 6.5 4.5 8.3

Diseases and conditions 41.6 53.9 48.7 30.1 37.5 23.2

Neoplasms 10.8 9.2 17_2 8.9 112 6.8

t:alignant neoplasms 10.2 8.7 16.3 8.4 10.5 6.5

Leukemia 4.3 3.5 8.0 3.2 4.3 2.1

Congenital anomalies 6.5 12.2 6.6 25 3.4 1.6

Heart 3.4 6.7 3.2 1.3 1.7 .8

Nervous system 5.1 7.3 5.6 3.3 4.1 2.6

Respiratory system 4.8 8.0 4.3 2.9 3.8 2.1

Circulatory system 4.2 3.9 4.0 4.5 5.4 3.7

infective and parasitic 2.6 4.4 2.6 1.4 1.9 .9

SOURCE National Center for Health Statistics. Division of Vital Statistics: Unpublished data from

the national vital registration system.

Need for Primary Care Services and Hospitalizations

Many chronic disorders-diabetes, sickle cell anemia, and hemophilia, for example-increase the risk of infections and serious accidents,

occurrences that in turn can aggravate the chronic disorder_ Thus,

children with these conditions need regular primary care services-routine examinations and treatment for common illnesses-and more frequent

hospitalizations for acute conditions than healthy children.

326
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Indices of Educational Needs

Different groups of chronically disabled children have different educational needs.2 Children who are mentally retarded, for example, need

special educational services of a quite different nature than those who

have specific learning disabilities or sensory deficits. Orthopedically

impaired children require certain archite-aural and structural aids if they

are to have full access to education. For children with systemic disorders,

educational problems presumably result from secondary effects of the

disorders, such as days missed from school or feelings of depression. In

general, lengthy school absences and lower achievement levels are

common with handicapped children (24). Estimates of the percentage of handicapped children enrolled in schools

(table 5) are substantially lower than the estimates of handicapped

children in the whole population (12-13 percent). Under EU.. 94-142,

school districts can receive Federal funds for special services for up to 12

percent of their enrolled populations. This amount is almost double the

proportion of students currently identified as handicapped. (Some school

districts may have even higher rates of handicap among enrollees, which

would require support from other sources.)

HANDICAPPING CONDITIONS:

DIFFERENCES, COMMONALITIES, AND

SPECIAL PROBLEMS

Differences

Handicapping conditions vary widely in the amount of special medical

care they require, the extent of dependence they impose, the age at which

they appear, their stability, their duration, and the predictability of their

progression. Sensory, cosmetic, motor, emotional, and intellectual handicaps occur; some of the more severe conditions include all of these.

Disorders have acquired different "reputations" that can affect the social

adjustment of the afflicted child. In addition, the impact of disability can

be very different among children with the same medical diagnosis. For

example, there can be a greater difference in medical status between two

diabetic children than between a diabetic child and a healthy child.

Financial resources available in the public and private health care

systems for the support of various disorders vary widely among the States.

Handicapping conditi-ons also differ in the ways their physical and

psychological dimensions interact For certain physically handicapping

conditions that are primarily genetic in etiology or that result from

accidents, emotional sequelae can be viewed generally as "secondary

problems:* For those conditions that primarily affect emotional and

cognitive functioning, physical health sequelae can be considered as

2A more complete understanding of the educational needs of handicapped children can be obtained

.Tom the educational literature (25) and the literature pertaining to P.L. 94-142 (26).

328 33 -1-7
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these routines must become interwoven into the family's daily life. If they

are not, stress increases_ Indeed, these routines often become lightning

rods for the intense feelings of frustration and anger of both parent and

child. As the child grows older and major family events such as moves, marriages, and deaths occur, the child's and the family's understanding of

the handicap and its meaning for them evolve. Smooth functioning can

suddenly become turbulent Periodic reassessments of both psychological and physical functioning are therefore necessary. The chronicity of the disabling conditions also limits the goal of care for

these children; instead of cure, optimal functioning is the aim_ For the

individual, this goal involves (1) some recognition (not necessarily total acceptance) of the disorder and the limitations it imposes, (2) efforts to

attain the maximum functioning allowed by the limitations, and (3)

sufficient freedom from preoccupation with the disorder so that mutually

satisfying relationships can be maintained and learning can continue.

Psychological Characteristics of the Family and the Handicapped Child

An important factor that influences the psychological adjustment of the

handicapped child is the overall functioning of the family (27). If, in spite of the handicap, the family provides a fairly stable and supportive

environment, maladaptive patterns of behavior are less likely to develop. Some evide, 'e suggests that family functioning as a whole deteriorates

(28), that par %Anal and marital tensions increase (29, 30), and that siblings show greater emotional or behavioral problems (32, 32) in the presence of a chronically handicapped child_ Other accounts suggest that some

parents and families become closer and more mutually supportive during

the treatment of a chronically ill child and that siblings of such a child are not more likely to respond in maladaptive ways (29, 33). All of these

studies, however, have numerous methodological problems that may

partially account for their disparate findings. The problems presented to parents by a chronically handicapped child demand that the family acquire certain knowledge not required of other

families. They need to learn, for example, about diets, financial resources

(and the complexities of securing them), how to explain to school teachers

that their child is severely ill, and (not the least important) how to manage

their own feelings, frustrations, and disappointments. Furthermore, they

cannot usually turn to neighbors for this advice, either because the

neighbors are not familiar with these problems or because the neighbors

themselves react adversely to the handicap. Health care providers therefore must be sensitive not only to what parents and families need to know but also when to provide this

information. When people are under great stress, very angry, or in shock, they tend not to listen very closely. When they have in some measure digested events, information is more readily understood_ Unfortunately, several studies indicate that communication between health care providers and parents is not always as helpful to parents as it might be (34, 35).

330 33J
Another important psychological factor for handicapped children is the

avvareness that they are different from other children. How children learn

about this difference, respond to it, and what it comes to mean in practical terms influence their lifelong psychological functioning. For example, handicapped children can feel so negative about themselves that self- esteem is never developed, or sudden crises may overwhelm their ability to understand what is happening and result in withdrawal and isolation. In adolescence, chronically disabled children face a new set of

problems. Even for healthy adolescents, the passage from childhood to

adulthood is marked by rapid change and great sensitivity -'the body

becomes unpredictable; certainty about the future alternates rapidly with

confusion; the urge for independence becomes strong; self-esteem is held

tenuously. The growth spurts of adolescence can aggravate some chronic disorders, such as cerebral palsy and conditions requiring mechanical aids (36). Some conditions (e.g., muscular dystrophy and cystic fibrosis) worsen through childhood, so that dependence increases during adolescence, contrary to the normal pattern of development. By early adolescence, the future begins to assume definite shape, and

the implications of chronicity suddenly becom.r. very potent The adoles- cent's desire to move outward may be severely tempered not only by the

real limitations of the handicap but also by his own fears and byyears of parental dependence. Parents of a handicapped adolescent may also find

the act of "letting go" extremely difficult Handicapping conditions, particularly if they are visible or curtail normal adolescent activities, interfere with social relationships. Moreover, education about responsible sexuality is as important to handicapped

adolescents as to healthy ones.

The Handicapped Child and the Community

Some investigators argue that the handicapped children of this country

constitute an oppressed minority, subject to systematic segregation and

stereotypic assumptions of general ineptitude (6). Indeed, handicapp.xl children and their families often find themselves either without any

consistent network of community support or with outright rejection from

their neighbors. For example, professionals who work with leukemic

children reported that neighbors sometimes would not allow their children

to play with a leukemic child out of fear that this cancer was contagious.

THE HEALTH CARE DELIVE:RY SYSTEM

FOR CHRONICALLY DISABLED CHILDREN

The health care delivery system for handicapped children currently

contains many financial, professional, and technical resources for providing necessary services, as well as an expanding base of public and

legislative support. Despite these resources, health care for these children

and their families remains inadequate and unorganized. The recent

331 v40
passage of P.1.. 94-142 has stimulated great effort toward better

integration of health care services for individual handicapped children,

but barriers to the Jaw's effective functioning remain forthidable.

Legislative Underpinnings

Presently, at least 10 major pieces of Federal legislation influence

maternal and child health. For handicapped children and their families,

the most important are the Education for All Handicapped Children Act

of 1975 (P.L. 94-142), the Maternal and Child Health (MCH) and Crippled Children's Service (CCS) sections of Title V of the Social

Security Act, and Medicaid (Title XIX of the Social Security Act).3

Integrated well, these Jaws could form a unified base for comprehensive

care to handicapped children. They have, however, generated disparate

interests that frequently work against each other_

Implementation of PI. 94-142an Act that is complex and revolution- ary in its implicationsis still in its early stages. Not surprisingly, many

problems of fmancing. coordination, and interpretation have occurred. On

the whole, however, the law promises to improve substantially the care of

handicapped children. Its major provisions are

Identification, location, and evaluation of handicapped children Preparation and implementation of an individual education

program for each child identified Special education provided in the least restricted environment Provision of related services, including a variety of therapies, psychological services, and medical services for diagnostic and

evaluation purposes Procedural safeguards to ensure parents due process

In-service training of personnel Although implementation of the Act involves medical care professionals, the medical care establishment was not involved in its passage. Conse- quently, there have been particular problems in developing cooperative, nonadversarial relations between local and State education agencies and

existing medical resources. One of the major medical resources for States is the CCS program,

which has a very long history of providing high quality medical services to

handicapped children (37). However, the program is small, serving

approximately 750,000 children, or about eight-tenths of 1 percent of all

handicapped children. Moreover, its funds are ha -fly adequate to its task:

in fiscal year 1978, the CCS program spent : under $225 million,

compared with expenditures of $22.518 million for Medicare and $18.625

3The others are Section 1905(aX4XB) of Tide :=i of the Social Security Act (the Early and Periodic

Smeesing, Diagnosis. and MilitrOCEM Legislation); the Supplemental Security Program established by the

1976 Amendments to Title XVI of the Social Security Act; Social ServiceAmendments to Title XX of the

Social Security Act; the Rebabditation. Act yr 1973 and the Amendments of 1973; the National School

Lanach and Child Nutrition Act of 1946 and Amendments of 1975; the Economic Opportunity and

Conummity Partnembip Act of 1974 (the legislation that supports Head Start); and the Devdopmentally

Disabled Assistance and Bill of Rights Act of 1975 and Amendmentsof 1978.

332
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services than providing equally needed but nonreimbursable ones.

Manpower Issues: Coordination, Training, and Socialization

The health care delivery system for chronically disabled children

includes not only the traditional medical service providerspediathciaticz, family doctors, pediatric nurses, physical therapists, medical social workers and othersbut also other institutions that are necessarily

involved in the health care of handicapped children and their families

schools, public health programs, and community organizations. The competing interests, contradictory values, and difficulties in

communication between these diversi caregivers hamper the development of an integrated, comprehensive health care delivery system for chronically disabled children. Indeed, lack of coordination, which exists at all

levels, from the Federal Government to local providers of services, is the most pervasiv, characteristic of the present system. For example, the

family pediatrician and the medical specialist treating the child's disability may not coordinate their services (40, 41, 42). Frequently, neither takes primary responsibility for the child's overall health. Even less effective

coordination may be found between professionals of different disciplines

(43). One of the strengths of PI- 94-142 is that it requires multidisciplin- ary teams to develop individual education plans for handicapped children, a provision that may ultimately force more effective cooperation between

The skills, perspectives, and biases developed during professional

training influence the subsequent practices of health care professionals_ Although there are important exceptions, most health care training

programs pay little attention to the handicapped child's whole environ- ment and to developing skills in interdisciplinary cooperation. The professional training of pediatricians, for example, has traditionally lacked

sustained attention to developing these skills_ Instances of extremely

insensitive communication between doctors and families can result (e.g., Massie, 1978), and a lack of communication between doctors and school teachers is common. To help ameliorate such problems, the American Academy of Pediatrics plans to initiate in-service and pre-service training programs to improve the skills of pediatricians in working with handi- capped children, their families, and their schools. Furthermore, the

increasing numbers of pediatric nurse practitioners and behaviorally

oriented professionals (e.g., psychologists concerned with health care

services) may 1-,zilg to the medical institutions a greater sensitivity to

nonmedical concerns_ FOr any care provider working with chronically ill childrenchildren who will never be normalavoiding "burn-out" is a serious and difficult problem. Training programs should include a candid review of profession- als" own needs for support, in order to counteract negative feelings that might otherwise compromise the quality of care.

334

3 13
ACCESS AND AVAILABILITY OF SERVICES FOR HANDICAPPED CHILDREN

For adequate health care, chronically disabled children and their

families must have access to (1) primary and specialized medical services; (2) advice on financial and social resources; (3) professional assessment of

the psychosocial condition of the child and family; and (4) coordination

of the various aspects of care. To illustrate ways the present system does not meet these four needs, and to evoke some feeling for the lives of chronically disabled children and their families, the following three case

studies are presented_

Juvenile Diabetes

Juvenile diabetes, which occurs in 1 to 1.9 per 1,000 children under age 21, appears to be relatively evenly distributed across racial groups and

socioeconomic classes. Because there is a genetic component to the

disorder, it frequently affects several members of the same family_ Juvenile diabetes is usually a more serious condition than adult-onset diabetes, and

is less readily controlled. It can lead to serious medical complications, particularly kidney disease and blindness_ Anecdotal and empirical evidence suggests that emotional factors are closely related to control of

the disease. When juvenile diabetes is first manifested, the child may

become critically ill and require hospitalization to determine diagnosis, establish the diabetic regimen, and educate parents and child about management of the disease. Usually, the child's condition improves quickly during hospitalization. Diabetics must keep a caretel balance between the level of insulin

injected and the amount of sugar in the bloodstreamwhich depends on

the sugar content of foods eaten and the amount of food energy burned during exercise. Imbalance can be serious, even life-threatening. Some diabetics experience sudden, dangerous insulin reactions if they take in

too little food or burn it too rapidly through exercise_ Insulin reactions produce convulsions and unconsciousness that can cause brain damage

and mental retardation_ Once the reaction becomes severe, the child may

resist taking the quick sugarsuch as °ran juice, chocolate, or raisins

that will avert the full reaction. Insulin reactions often occur at night, because of the long interval between meals, when they are particularly

dangerous because others may not hear cries for help, or because the child may pass out while sleeping. When there is not enough insulin for the sugar level in the blood, coma or ketoacidosis occurs. These reactions are more likely when a child has an infection of some sort.

The numerous small details in a diabetic's life can be exhausting_ For example, at the beginning of the stabilization period and during

exacerbations, the second voided urine in the morning, before breakfast, must be tested and the results charted_ Most diabetics can eat almost any

foods; the problem is calculating calories and grams of carbohydrates, protein, and fat_ Furthermore, the diabetic child generally has to eat at the

335
same time each day. A "brittle" diabetic cannot sleep late and miss breakfast. As noted, ( 1 5) "to be a good diabetic requires typical middle class values: self-control, postponement of gratification, and hope that one's efforts will be rewsirded."

Case Example

John K is a I3-year-old diabetic who lives with his parents and a brother 2 years older in a small town about 30 miles from a medium-sized

city. Mr. K is a sales manager for a building supply company. Mrs. K

recently began a part-time secretarial job. John's diabetes was diagnosed when he was 11, although for about 6 months prior to diagnosis he had

complained of being very tired, of not sleeping well, and of not being able

to play games with other childrenvery unusual complaints because he had generally been an energetic child. His parents had taken him to the

family pediatrician twice during this period. No physical cause for John's

fatigue was found, and although his parents remained puzzled, they

concluded that this was just a "stage" that John would pass through. The diagnosis of juvenile diabetes was made during an emergency hospitalization, precipitated by severe cold and extreme sweating, vomiting, and

trembling. Following the diagnosis, the K's were referred to the juvenile diabetic

clinic of a university hospital in the nearby city. There they learned about

the necessary diabetic regimen, the relationship between physical activity

and insulin levels, the diminished life expectancy of a diabetic, the

likelihood of long-term medical problems, and the pain and inconvenience of daily insulin injections. From their present perspective, the parents readily acknowledge that

the period from a few months prior to and the year following diagnosis was extremely difficult for the whole family. They believe that the hospital clinic provided good service, but they were upset with the long and costly

trip, the long waiting time at the clinic, and the staffs relaxed attitude

about controlling insulin levels. The parents wanted to be very involved in decisions about food intake and insulin shots. but believed that the clinic

staff tended to focus almost exclusively on John. After several months of

indecision and discussion with their pediatrician, John's parents decided

to seek all of his care, except for emergencies, from the local pediatrician. This arrangement, they reasoned, would also ensure that John's regular health care could be provided by the same doctor he had always seen. There were other problems: Mr. K's health insurance was fairly

comprehensive, but it did not cover expenses for special foods, syringes, urine-testing equipment, long distance phone calls to the clinic, or

transportation. In fact, Mrs. K began her part-time job to help defray

these expenses. For quite some one the K's were angry at John's school teacher, because she had told the rest of the class John was a diabetic and needed

to urinate frequently. This statement resulted in considerable teasing of both John and his older brother. The two sons seemed to handle the

teasing well, but their parents say they often felt sorry for them.

336

3 1, -5
Just prior to John's initial hospitalization, his parents remembered that Mr. K's father had been diagnosed as a diabetic about 6 months before he had died of a heart attack. Despite many reassurances from the local pediatrician that diabetes results from a complex interaction of genetic, immunological, infectious, and nutritional factors, Mr. K admits that for several months he had blamed himself for his son's condition, until he had

a long talk with a friend at work who also had a diabetic son. John's parents now say the family has adjusted well, although they worry about how John will do in adolescence, especially with respect to dating. They are also reconsidering their decision to place John's care

almost entirely with the pediatrician. They trust him, but he does not seem

to know about financial resources available to families with diabetic

children. They would like to find someone with whom they could also

discuss dealing with John's school and teachers, who still treat John as "special."

In general, while Mr. and Mrs. K appeared very concerned about John's condition, they were not well informed about the subleties of diabetes. For example, they immediately took tight control of John's diet, exercise, and sleeping patterns with a strictness that seemed motivated more by psychological factors than by medical necessity. A nurse at tile diabetes clinic had noted this situation and questioned whether the

importance of control was related in any way to the grandfather's death. None of the social workers, psychiatric nurses, or psychologists at the

clinic had discovered what the parents really understood about the illness and how that understanding might have affected their beliefs about controlling John's insulin levels. The pediatrician, who seemed particularly unprepared to deal with his diabetic patient and who perhaps unwisely

accepted the responsibility for John's care, also appeared unconcerned

about the psychological meaning of the disorder to the family.

Spina Bifida

Spina bifida is a birth defect that has replaced poliomyelitis as the major cause of paraplegia in young children_ Recent technological advances and the availability of funds formerly earmarked for poliomyelitis victims have resulted in increasingly effective neurosurgery for newborns. Now repeated surgery and intensive management allow

children with this condition to live into adolescence and their early

twenties.

Spina bifida, a puzzling multifactorial genetic condition, results from

incomplete closure of the lower end of the bony spinal cord. It occurs at

the rate of one to two cases per 1,000 births. In the United States, rates in white families of low socioeconomic status are three times higher than in

the upper socioeconomic groups. Rates are low among blacks, Jews, and Chinese and are high among Irish and Sikhs. A great range of physical handicaps is associated with spina bifida, with hydrocephalus (accumulation of fluids compressing the brain) at the

severe extreme. Problems common to most children with this condition

34 G 337
are bladder and bowel dysfunctionincluding incontinenceparalysis and deformities of the lower extremities, repeated fractures, tendency

toward obesity, and some increased likelihood of mental retardation

(although many children with spina bifida have normal intellectual function). Immediate surgery was once performed on almost all children born with this defect, but this practice has been somewhat modified. Certain criteria of severity contraindicate surgery, and children with these

criteria are allowed to die_ The treatment of children with spina bifida involves a wide range of services. At birth, neurosurgery is performed to close the spinal cord

lesion_ Many, possibly up to 20, additional operations are needed to

correct the common orthopedic problems, which include paralytic dislocation of the hip, deformed feet and knees, and brittle bones. After such surgery, many children are able to walk with braces or crutches, but a large percentage are confined to wheelchairs_ Scoliosis and other spinal deformities occur frequently in those children in wheelchairs. In general, coordinated medical care is greatly needed. In addition to

surgery, the needed services include genitourinary treatment; intravenous pyelograms; blood counts; urinalyses; electroencephalograms; dermatological treatment; eye, ear, nose, and throat services; dental services; brace fittings and long-term physical therapy; consultation and counseling with the parents; primary care; and acute illness care (15). Costs of hospitalization and medical service are usually reimbursed, at least partially, through insurance. Expenses not met by insurance wheelchairs, braces, home equipment, diapers, and transportationare often covered through Crippled Children's Services, but the extent of this coverage varies considerably from State to State. Given the likelihood of some intellectual retardation, these children

generally require special education services to identify and develop their

learning capacities. Because many children with spina bifida are confined

to wheelchairs, special access to school buildings and classrooms is needed.

Spina bifida children and their parents have all the problems that affect people in braces and wheelchairswell-intentioned pity, assumptions of

inadequacy, immobility, the inability to participate in active play and most sports, for example_ Generally, parents need a great deal of support in adjusting to the potentially overwhelming psychosocial problems associated with spina bifida. Typical problems include the almost constant smell of urine that accompanies these children, which is apparently

extremely difficult to prevent; parental overprotectiveness; the child's obesity (which makes mobility even more problematic); and the child's extreme feelings of inferiority. which may be exacerbated upon school entrance and can lead to se: ious depression during adolescence.

Case Example

Three-year- ,Ad Kathy S was born with spina bifida of moderate severity

soon after her parents were graduated from high school. Her parents grew

up in lower income families and currently live with Kathy's maternal gran-l-nother. Mr. and Mrs. S had never heard of spina bifida, and it was

338
some time before they understood and adjusted to the implications of the disorder.

Luckily, the social worker at the metropolitan hospital where Kathy was born was knowledgeable about the financial resources available to the

family. She referred them to the Crippled Children's Agency, which has since coordinated the financing of the many operations and orthopedic devices that Kathy has needed. Because of the support available through various Federal programs and through the local chapter of the National Spina Bifida Association, the family's problems have not beers financial. Instead, they have been practical, daily difficulties: too little sleep, getting

to the hospital clinic, learning the skills necessary to take care of Kathy's needsparticularly her frequent urinary tract infectionsand coping with an ungainly, unattractive, and malodorous child in a small apart- ment

Although Kathy's family, particularly her grandmother, tries to concentrate on the positive aspects of her development, and although her mother and grandmother share responsibility for her care, they often wish that

they could take a vacation from Kathy or place her in a preschool, day

care service, or respite facility capable of caring for a severely disabled 3- year -old. She may be admitted to a half-day special education program in

a nearby university next year. Kathy's grandmother is worried about her daughter's marriage. After 3 years of stress, her son-in-law is tired, very depressed, and considering

leaving the family, "as we all arc," she admits. Kathy's mother is mostly

concerned about how they will cope when Kathy is bigger. She will need

sturdier and larger wheelchairs, which means that the family will have to move to a new apartment or substantially modify the present one. Kathy's mother also worries that she will have another deformed child if she

becomes pregnant, although the hospital social worker told her not to worry about this possibility. Neighbors have been fairly helpful, and the medical care at the hospital has been adequate, except for long waiting lines and minimal information

about the operations Kathy needs. During the first year a very helpful nurse came to the home periodically. The family was sorry she stopped

coming (when the hospital cut back staff), because she had been so

informative and supportive. The family certainly has concerns about their own acid Kathy's future, but in the grandmother's words, they "just live

from day to day and take things as they come."

In general, this family seems to be coping, but without much spirit or guidance. Presently, no one is available to explain the full range of

treatment Kathy will need or the events during surgery. Furthermore, they do not have a regular pediatrician and take on faith that all Kathy's needs are being met by the hospital.

Mild Mental Retardation

Approximately 2 percent of all children are mildly mentally retarded, scoring between 55 and 70 on standardized intelligence tests. Most of the children diagnosed as mildly mentally retarded are from lower socioeco339

3 4
nomic households and may be subject to environmental conditions that are not conducive to optimal development. Mildly retarded children generally require few medical services beyond primary health care, but they have diverse social and educational needs. The number and types of skills that they can develop vary widely. The goal of "optimal functioning" is particularly relevant for a mildly mentally

retarded individual

More often than not, mildly mentally retarded children know that they

are significantly disadvantaged, compared to other children, but lack the

verbal skills to express their feelings about this disadvantage or to ask for help in understanding their predicament. Consequently, behavior problems often ariseimpulsiveness and disruptiveness or withdrawal and

isolation. These behavior problems may be compounded by the labels of "retard" or "stupid" that children reserve for those in special education

classes- An estimated 10-30 percent of noninstitutionalized retarded

chilren have significant emotional problems (44). Development of effective means for providing emotional support for mentally retarded children outside the fam*ty has been very difficult. Different agencies have different priorities. Some serve only severely

retarded children; others serve only emotionally disturbed children. As a

result, emotionally disturbed mildly retarded children have become one of

the largest groups who "fall through the cracks" between agencies. Mildly mentally retarded children place many demands on their

families. They require great patience, communication at very basic levels, and special protection. Yet, these children have their best chance of

reaching optimal functioning within a caring, mutually supportive family. Moreover, because few residental institutions for the retarded currently

accept mildly retarded children, support for their families is essential.

Case Example

Ronnie B is a hefty 16-year-old who lives with his mother and father in

a lower middle class neighborhood in a fairly large city. His father drives a

truck and his mother has not worked outside the home since Ronnie was

born.

Ronnie has a long history of learning and emotional problems. He has been in special education classes during almost all of his schooling. Over

the years he and his family have been in touch with numerous professionalsa minister, two school psychologists, a social worker in a community mental health center, and five staff members cf the child

psychiatry outpatient clinic of a teaching hospital. Repeated evaluation

and testing have reaffirmed the consensus that Ronnie is mildly mentally

retarded with many emotional problems that significantly interfere with his development and capacity to learn. No consensus has been reached, however, on the exact nature of these emotional problems or the best strategies for solving them_ As a result, few attempts have been made to

coordinate the services and support of the various concerned individuals

to help this family. In particular, the schools apparently never have paid

sustained attention to Ronnie's problems partly because of extremely poor
special education facilities, and partly because the family tends to be very

uncooperative.

The efforts of these professionals probably have prevented family life

from deteriorating completely, but it is clear that Ronnie and his parents

have been facing a long list of problems for some time. Ronnie has .lever

had any friends. Instead, he has a collection of sticks at home that he says

are his friends and that his parents are afraid to take away because he gets

angry. His mother has never left him alone in the house, and he has never

spent the night away from home. The parents admit that they have

remained married for Ronnie's sake. The father also appears to have

significant emotional problems. The mother wants to get a job but believes she would have to learn how to drive a car, a feat that she deems

impossible.

At one point, Mr. and Mrs. B became extremely worried about

Ronnie's violent outbursts. In one such instance, he struck his mother and

knocked her over. This event, coupled with the recognition that he would

soon have to begin living independently, prompted the parents to inquire

about placing him in an institution, a move recommended by mental

health professionals several times in the past but vetoed by the parents.

Unfortunately, by the time they began to investigate placement possibilities, Ronnie was too old for most of the institutions for

emotionally disturbed children, although too young for adult half-way

houses or other adult residental living arrangements. Furthermore, he was

too emotionally disturbed or not intellectually retarded enough for

institutions that accepted teenagers with behavior problems. Ronnie's

parents did not have enough money to send him to a suitable private

institution out-of-State.

The only available solution was a State-run therapeutic residence.

However, for funding purposes, it required that parents give up custody of

their children to the Statea move that Mr. and Mrs. B vehemently

opposed, until Ronnie hit his mother again during one of his angry

outbursts. The application was subsequently submitted and Ronnie was

placed on the waiting list. Apparently there will be a place for him in

about 4 months, just before he turns 17.

This family has endured severe and chronic emotional problems. These

problems were first evident to a school psychologists who noted when

Ronnie was 7 that extreme family problems were aggravating Ronnie's

existing limitations. When the usual professional suggestionsurging the

parents to seek counseling, providing special educational facilities, raising

the possibility of institutional placementwere largely ignored, the psychologists turned their attention to other students. Because few

suitable placements are available for children like Ronnie, he cannot be

helped readily by the existing health care delivery system.

Case Studies: Conclusions

These three cases hardly illustrate the full range of inadequacies of the

health care delivery system for chronically disabled children. However,

3 0 341
they provide a picture of the complex needs of these children and their

families, and the extent to which the health care delivery system fails to meet these needs.

If the delivery system were more responsive to the needs of the diabetic child and family, it would provide sufficient flexibility to allow different ways of working with different families, information about resources available to the pediatrician, school programs where teachers could learn

to cope more effectively with chronically ill children, and additional social supports for parents to help them with both practical and emotional problems. The family of the girl with spina bifida urgently needs relief from the daily stresses of her care. In addition, this family needs a concerned

advocate who could help them find such services as professional genetic counseling, primary health care, and a source of information about the operations that are needed and their implications. The care of the mentally retarded adolescent illustrates one of the worst miscarriages of professional concern. Only by working together could the different parts of the health care system have provided this family with

some chance for solving its problems. In any of these cases, if the family and child had been in the right city

and found the right professionals, chances are that their needs would have been well met. However, such situations are relatively rare. Providing the

full range of services when and where they are needed will occur only with

integrated legislation, coordination, and cooperation among professionals and changes in reimbursement patterns and professional training. Greater support for direct health services is also needed.

Needed Health Services

The treatment of acute illness has an obvious goal: returning the

individual to a state of healthy functioning, or "curing the patient" Cure

is not possible for children with handicapping conditions. Instead, the goal of care and treatment must be "optimal functioning."4 Many

different skills may be necessary for a disabled child to reach optimal functioning and to assist the family in helping the child toward this goal. These include medical diagnosis and care (from providers of both primary

and special services), social services, psychological assessment and care, physical rehabilitation, educational assessment, school and community

liaison services, and other services tailored to meet the individual needs of

the child and family. Not only must these services be available, but they

also must be coordinated in some reasonable way. Furthermore, because of the long-range and frequently complex nature of chronic disorders,

~Definitions of optimal functioning will certainly vary as much as the definitions of "'adjustment.-

-normality.- and "health." But any definition should encompass at least: the development of the child's

self-help skills leading toward the greatest feasible degree of independence: an ability to perform useful work; a capacity for participating in rewarding interpersonal relationships; and freedom from

preoccupation with the disorder_

342 mr- q--.1 qt./
communication among the various service providers must be sustained

and reasonable continuity maintained from one year to the next. Like all children, a handicapped child lives in a very complex

environment, any part of which can be nurturant, destructive, or neither. To aid the handicapped child toward optimal functioning, the goal of health care professionals must be to help ensure that each areamedical, social, educational, financial and so forthnurtures the child's development.

Assessments

Comprehensive health care services for handicapped children require understanding what the child and family need to reach the goal of optimal functioning and developing a fairly comprehensive plan to meet their needs, including the identification of who will be responsible for coordinating care. Assessment of the child's medical status, prognosis, and functional capabilities is the first step. In addition to establishing a physical diagnosis, such an assessment would establish routines for the child and parents and be the basis for reasonable expectations for the level of

functional independence that can be achieved. Because of the major role played by the family in daily management of

the child, an assessment of the family's strengths and weaknesses suggests methods for facilitating the adjustment process and notes potential trouble

spots. The evidence for greater disturbance in the psychosocial functioning of handicapped children in comparison to healthy children unders- cores the need for complete psychosocial assessment of both child and

family and the importance of identifying those who risk more serious problems. Assessment of community resources available to the familyhome health agencies, transportation, volunteer groups, and, most important, finance resourcesis needed. Identifying the most appropriate educational environment for the child is also of crucial importance. This

identification requires competent education specialists and good liaison

between the medical and education systems.

Improved Case-Finding Practices

Defects detectable at birth and extremely low birth weights account for a large proportion of chronically disabled children (44, 46). Recently, the

technology for medical diagnosis and care of newborns has improved

dramatically. The increasing number of neonatal intensive care units and

a sophisticated reporting system for hospital births ensure that in the

future an even larger proportion of chronically handicapped children will be identified at birth (47). This situation will provide an opportunity for health care professionals to begin working with the infants and their

families immediately, to ensure proper management of the disorder, decrease the likelihood of disability, and aid the fanxily with psychological and psychosocial support. At present, newborns at risk for disability may

be identified and appropriately cared for during their initial hospital stay,

352 343
but that contactand the opportunity for any necessary followup

regarding management of careis frequently lost afterward (20). For those children whose handicapping conditions appear later in

childhood, adequate case-finding requires effective outreach and commu- nity education coupled with well-publicized avenues for referrals Inade- quacies in this area are indicated by the following: Insofar as Genesee County (Michigan) is found to be vastly underidentifying and underserving handicapped preschoolers, the indict- ment is not solely of the school districts, but of the community as a whole. Child-related professionals are not referring or advocating for services frequently enough, parents are not familiar enough with

educational entitlements and available programs, and the schools are not providing enough public information on special education mandates. (43) P.L. 94-142 requires States to outline their processes for identifying

handicapped children. However, with the exception of incentive grants for

identifying handicapped children between ages 3 and 5, specific funding is not provided to the States for this purpose. Under these circumstances, all counties may not have effective means for identifying preschool handi- capped children for quite some time.

Health Promotion and Disease Prevention Sn-Ategiess

Society has long recognized that chronic handicapping conditions appearing in childhood place multiple burdens on communities, families, and, of course, the afflicted children. Therefore, interest in the prevention of these conditons has always been high. However, the knowledge, strategies, and resources to mount effective preventive efforts have not been at handcertainly there are few such simple and effective measures

for preventing handicaps as immunizations for preventing infectious diseases. Recent advances in the understanding of genetic and environ- mental influences on health and illness have changed this picture

somewhat Preventing chronic and handicapping conditions remains complex because of the great diversity of conditions, the multiple and

interacting factorsgenetic, environmental, socioeconomic, behavioral, and othersthat contribute to their etiology and severity, and the great variation in preventive strategies that may be devised to address these

factors.

Primary prevention includes those actions taken prior to the develop- ment of a disease or disability to prevent its occurrence, such as

immunization or genetic counseling. Secondary prevention includes those actions taken to detect disease in its early, asymptomatic stages and to

arrest its progresssuch as screening for incipient hypertension or providing crisis counseling to avoid serious emotional problems Tertiary prevention includes those actions taken after the development of a disorder to reverse its progression or to minimize its effectssuch as administering vitamin B-12 to prevent the recurrence of the manifestsSTItis section was written by Sarah S. Brown and Henry Ireys.

344 3
dons of pernicious anemia or providing rehabilitation services to children

with severe scoliosis. (46). Health promotion is a generic term referring to activities aimed at

improving the quality of life and fostering liealthy environments. In its

broadest sense, it encompasses all three levels of prevention. Important

examples of each of the three levels follow.

Primary Prevention Strategies

Prenatal CarePrenatal care is one of the best means for preventing premature births and fetal and neonatal health problems. Prenatal care plays an especially significant role in the reduction of the grave

consequences of prematurity, including mental retardation and certain

physical impairments. It is particularly important for pregnant teenagers, particularly those under 15, who are more at risk than older women for

such pregnancy complications as toxemia and premature labor.

Despite the known value of prenatal care for mother and infant, in

general it has not been employed as fully as it should be.6 Many women at

highest risk receive little or no prenatal care. Every effort must be made to increase women's access to and utilization

of quality prenatal care services. Such efforts should include education

regarding the value of prenatal care, outreach to high-risk groups, such as

teenagers, removal of financial and eligibility barriers, and continued

research and evaluation to improve the quality of prenatal care.

Prevention of Alcohol Abuse During Pregnancy

The adverse effects of alcohol on the development of the fetus are well

known, but often not recognized. One of the most serious clinical manifestations of the "fetal alcohol syndrome" (FAS" is mental deficien- cy, including severe mental retardation. Other mark..: uktions are low birth

weight and various abnormalities of the face, limL-3. and cardiac

and neurological systems. The extent of alcohol abuse among women of childbearing years is

unknown, partially because various social factors keep many of these women hidden. But Federal estimates are that as many as I in 2,000 births

may be affected by FAS. The potential FAS incidence among infants born to teenagers is

particularly disturbing. According to figures obtained in the 1974

National Survey of High School Students, about 8 percent of teenage girls drink distilled spirits once a week or more. (School dropouts are not

included and may have higher drinking rates.) In 1974, 247,000 babies

were born to girls 17 and under in the United States. Thus, a conservative

estimate of the number of infants born to adolescent mothers and who

may be at risk for FAS is almost 20,000 annually. The actual number is probably considerably higher, however, because studies show that teenage problem drinkers are also likely to have early sexual experience; teenage

°For details on the rationale for. conspouents in, and utilization of prenatal care. see 'A Child's

Degianing" in this vOiCSOC.

345
pregnancy and problem drinking may well be more than randomly

associated.

FAS prevention strategies revolve primarily around three options: pre'.- ration of alcohol abuse itselfespecially in pregnant womenpre- vention of births to women with drinking problems (through contracep- tion and abortion), and general health education directed toward the

public at large regarding the risks of alcohol abuse. Each of *hese options is limited in its demonstrated effectiveness. Preventing alcohol abuse

remains problematic, effective contraceptive methods and abortion are not universally available or acceptable to American women, and current health education efforts have limited effectiveness. Each of these problems

is greater when adolescents are the target population.,

Prenatal Diagnosis of Congenital ConditionsThrough various tests, an

ever-increasing number of birth defects can be diagnosed during pregnan- cy with a high degree of accuracy. These defects include such severe conditions as Down's syndrome, neural tube defects, and Tay-Sachs disease. Prenatal detection of defects permits the options of terminating the pregnancy and of early preparation for care of a severely handicapped

infant. If treatments for these defects become available, prenatal diagnosis will enable early initiation of ameliorative measures.

Prenatal diagnosis currently has four major limitations: (1) opposition

to abortion for genetic disorders, (2) inadequate facilities and personnel to

zrf'orm tests on all candidates for the procedures,7 (3) the uneven policies of third-party payers with respect to reimbursement for the costs of the

tests or subsequent abortions, and (4) limitations of the technology, which

include false negative and false positive results for some defects (although

the incidence of erroneous results is generally low), and the still limited

number of genetic disorders detectable prenatally.

Secondary Prevention Strategies

Early Case-FindingShortly after birth, neonates may be screened for several treatable inborn errors of metabolism or endocrine function that, if

left untreated, result in chronic and handicapping conditions. (Two ofthe

best known are phenylketonuria and hypothyroidism, both of which can

result in varying degrees of mental retardation.) Some States require such

screening for all newborns, and others are considering doing so. Even

though the number of affected infants is small, the benefits of early

diagnosis and treatment arc profound .g

Provision of Social SupportsSevere emotional problems secondary to

chronic disorders can sometimes be prevented if sufficient social support

is provided. For example, parents with leukemic children have organized

7Candidates include women over 35. identified carriers of genetic defects. women who have previously

borne a genetically defective child, and others known to be at risk.

°For an estimate of possible savings through early treatment of these disorders. see -A Child's

Beginning- in this volume.
to help otheriparents cope with the stresses involved in caring for a child

that may die. The provision of an appropriate advocate for the family can

help in locating financial resources and in understanding the reasons for

and implications of a particular medical treatmentall of which would

help to prevent stresses that could result in maladaptive patterns of

adjustment.

Tertiary Prevention Strategies

Appropriate School Placement. In 1974-75, 2.5 million children with

handicaps were not receiving an appropriate education (1975 United

States Code: Congressional and Administrative News. 94th Congress,

First session, Vol 2, 1975, pp. 1425-1508). Presumably, many of these

children had had handicapping conditions for some time but had not been

placed appropriately either because of misdiagnosis or because they were

assumed to be uneducable. Appropriate educational placement would

help minimize the effect of the handicap by enhancing the child's learning

abilities and is an environmental approach to preventing unnecessary,

further deficits in health status.

IMPLICATIONS OF SERVICES NEEDED

BY CHRONICALLY DISABLED

CHILDREN AND THEIR FAM111.1FS

The foregoing discussions of the health needs of chronically handi- capped children and their families and the ways in which the current

health care delivery system addresses or fails to address them, raise

numerous public policy issues. Several of these issues and their implications have been selected for further discussion in this final chapter.

Integrated Legislation

Coordination of P. L. 94-142, the CCS program, and EPSDT would

enhance dramatically the care of chronically handicapped children and

their families. Demonstration projects, such as those sponsored jointly by

the Department of Education and the Office of Maternal and Child

Health Services, can provide examples of different means of achieving programmatic integration at the State level. For coordination on a

national level, however, several difficult quef44.---- remain, including:

Who is the final guarantor of quality care for this population: the

State or Federal Government? Schools or CCS programs?

To what extent should the Federal Government set and enforce

guidelines for State programs? What role might regional offices play in providing States with

assistance or in monitoring State programs?

9 Vanclerbelt University Medical Center. 1Personal communication. 1979.

347

356
Financing Necessary Services

The current system for financing the care of handicapped children is

inequitable, capricious, and often indifferent to psychosocial service needs_ Two arguments suggest that the health care system should be more

active in seeking to provide comprehensive care for this population: first, because medical technology now lengthens the lives of handicapped

children, there is an obligation to preserve the quality of those lives by providing families with sufficient support so that relatively successful adaptation is achieved; and second., because our so...ety ostensibly views adequate health care as a right of all individuals, and because chronically

disabled children need adequate psychological and social services as part of their health care, these must be provided_ The child and family can adjust to a handicap uccessr.illy only if they

have sufficient freedom to make carefully considered choices, including

fref,-dom from crippling financial burdens, from social stigma, from

educational dead ends, and from emotional paralysis. If the health care system is to serve this population adequately, it must include financial, psychological, social, medical, and educational support. Health care providers can act as consultants, presenting the family with various alternatives, providing good counsel, and supporting the family when necessary. But the family must be closely involved in making final decisions.

Family Privacy

The corn rehensive care required by chronically disabled children

carries with it a major risk to family privacy. Comprehensive assessments allow the colle *ion of a great deal of information about a family's medical history and the social and educational functioning of its members. Potentially, this information could be available to personnel of numerous public or private agencies_ Clearly, appropriate safeguards must be

established to protect families from misuse of this information.

Needed Research

Research directed at clarifying issues raised by current legislative programs should be undertaken, to help in their implementation or to lay

the groundwork for any subsequent amendments. For example, as a result

of P.L. 94-142, certain applied research is nect:ssary to develop effective outreach and case-identification strategies, strategies for coping with

chronically handicapped children in regular classrooms, the identification of specific links between evaluation results and appropriate curriculum

goals. and a means for predicting which handicapped children will not benefit from mainstreaming_ Evaluation of the cost and efficacy of different strategies for managing the care of the handicapped child, an

area about which very little is known, should be of great assistance to

policymakers.

348
Because most hanciii-apped children live in families, research is needed on family adjustments to chronic handicap. Work in this area has just begun, and improvements in methodology are necessary, along with

additional assessment tr ols. Methods need to be developed to provide

families with more information, control, and decisionmaking power in medical settings. In general, to ensure that chronically handicapped

children receive adequate health care, more must be learned about the way families understand and respond to disability and to the health care

system. Prevention, which represents an important means of reducing the

frequency and severity of chronic disorders, should be a third major focus of research. This research would encompass a wide spectrumfrom

research on genetic factors in the occurrence of disabling conditions, to

developing methods for early identification and, when possible, treatment of disorders, to identifying harmful environmental agents (such as alcohol) causing handicaps, to developing sire ies to encourage preventive behavior, including the use of personal preventive health care services.

APPENDIX

Types of Chronic Handicapping Conditions of Childhood

A. Disorders of the Central Nervous System

L Poliomyelitis 2. Cerebral palsy

3. Epilepsy and other seizure disorders 4. Spina bifida 5. Spinal cord and cranial injury

B. Sensory Disorders

1. Speech disorders: cleft lip-palate, articulation defects, stuttering

rautism

2. Hearing impairment, including deafness 3. Vision impairments

C. Cosmetic Disorders

1. Facial deformities: severe acne, severe scarring 2. Burns

3. Scoliosis

4. Dwarfism

5. Cleft lip-palate 6. Many CNS disorders

D. Mobility Disorders (Muscular and Skeletal Systems)

Various orthopedic disorders 2. Thalidomide deformities

349

3 59
3_ Osteogensis imperfecta 4. Amputations 5. Muscular dystrophy 6. All the CNS disorders

a Systemic Disorders

1. Diabetes

2. Hemophilia, sickle cell anemia, and other blood dyscrasias 3. Cystic fibrosis Asthma

5. Arthritis

& Heart disease

7. Kidney disease

F. Malignancies

I. Leukemia

2. Other cancers

G. Mental Retardation

1. Borderline

2. Severe

3. Many CNS disorders

H. Psychiatric Disorders

1. Schizophrenia and psychosis 2. Severe affective disturbances

3_ Personality disorders 4. Long-term behavior disorders

L Severe Developmental Disorders

1- Failure- to-thrive syndrome 2. Autism

J. Persistent Learning Disability

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Needs. Cambridge, Mass.: Ballinger. 1977.

(2) Mundt!, D. Developing a Better Health Care System for Children, V, Anne III. Cambridge. Mass.:

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(3) Silver. G_ Child Health: America:- Future. Germantown. Maryland: Aspen Systems Corporation.

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1979

(5) Task Force on Pediatric Education. The Future of Pediatric Education: A Report. Evanston. III..:

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(6) Gila:man. J. and W. Roth. The Unexpected Min' ority: Handicapped Children in America. N.Y.:

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(7) ?kris. I. and P. Irnikerson_ Chro-...:.;...7/.8.7.-"-od Disorder: Promoting Patterns. of '440st/went. London:

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(8) Alford. 1979 Health Care Politics: Ideological and Interest Crocco Barriers to Reform. Chicago: University of Chicago Press. 1975.

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(10) U.S. Bureau of the Census. Current Population Report. Series T-23. No. 69 Washington. D.C., GOVOMOICEllt Printing Office. June. 1978.

(11) Schorr. L The Family's Interface with Social Institutions. A paper presented to the American Orthoprychiatrie Association. April. 15. 1977.

(12) Brewer, G.. and J. Kalealik. Handicapped Children: Strategies for Improving Services. New York: McGraw-1M. 1979

(13) Manson. A. "Long -Term Physical Illness in Childhood: A Challenge to Psychosocial Adaptation-- Peclarairs. 50: 803. 1972.

(M) Pleas. L and IC Roglunann. -Chronic Mums and Its Consequences: Observations Based on Three

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(I7) Werner. E. J. Bierman. and F. Frency. The Children of Kauai. Honolulu: University of Hawaii Preset, 197L

(IS) Smith, D. "Medical Needs of Children in Institutions for the Mentally Retarded:* American Journal

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(19) Rutter, M., J. 'Lizard. and K. Whitmore. (Eds.), Education. Health. and Behaviry Part IL London: Longman, 1970. (20) Kenn L_. J. Alpert. and M. Kishor. A Follow-up Study of Children Handicapped at Birth.

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(21) Plena 1. and B. Satterwhite. "Chronic Illness in Childhood: Selection, Activities, and Evaluation of

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(23) McAnarneyi, E.. L Mesa. B. Satterwhite. and S. Friedman. -Psychological Problems with Chronic

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(24) Cairns. N., S. Lansky, and P. Klopovich. Meeting the Educational Needs ofChildren With Cancer.

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(25) Tom. I'. (Ed.). Intervention Strategies for High Risk Infants and Young Children. Baltimore:

University Park Press. 1976.

(26) Jacobs. F. and O. Walker. 'Pediatricians and the Education for All Hr adicapped Children Act of 1975 (Public Law 94-142). Pediatrics 61: 135-137, 1978.

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1979.

(28) Friedrich, W_ "Ameliorating the Psychological Impact of Chronic Physical Disease on the Child and

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(29) Burtor, L. The Family Life of Sick Children: A Study of Families Coping With Chronic a:Haas:PcDigs' ease. London: Routledge and Kevin Paul. 1975. (30) Gatti. A. ?be Impact of an Abnormal Child Upon the Parents?' Bri dab Journal of Psychiatry 130: 405-CM. 197:

(31) Lavigne. J. and M. Ryan. -Psychological Adjustment of Siblings of -...hildren With Chronic Illness."

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(33) Hewitt, S. and J. Newson. The Family and the Handicapp-e. -hild. s ondon: Allen Unwin, 1970. (34) Lewis, C.. R Faders. C. Becker. J. Freeman,. and A. Fades. Patient Management of Chronic Illness:

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(36) Freeman, R. "Psychiatric Problems m Adolescents With Cerebral Palsy.- Developmental Medicine

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Child Health and the Community. New York Wiley. 1975- (39) Meyers. R.. -et aL The Social and Economic Impact of HemophiliaA Survey of 70 Cases in

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Disease Prevention.' Washington. D.C-: Staff paper. Institute of Medicine, National Academy of

Sciences,. January 1978- (47) MacQueen. J. "The Current Status of Services for the Handicapped Chad? Journal of the Iowa

Medical Society: 358-364. October 1978.

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Brooke. W. A Clinician's View ofNeuromuscular Diceases. Baltimore: William and Wilkins. 1975.

Debusky, M. The Chronically III Child and His Family. Springfield, IlL: Thomas, 1970.

Dram, D.. A. Barshicwicz. N. Irvin, J. K.eimell. and M. Klaus- -The Adaptation of Parents to the Birth of

an Infant With a Congenital Malformation: A Hypothetical Model? Pecffarrics 56: 710-717. 1975.

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Hobbs, N. "Helping Disturbed Children: Psychological and Ecological Strategy. American Psychologist

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Holmes. L. The Malformed Newborn, Practical Perspectives. Boston, Mass.: Genetics Unit. Massachusetts General Hospital, 1976. Institute of Medicine. `Infant Death: An Analysis by Maternal Risk and Health Care Contrasts." In

Health Status. Volume II. Washington. D.C.: National Academy of Sciences, 1973.

Moos. R. The Human Context: Environmental Determinants of Human Behavior. New York: Wiley.

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Naggan. L. and B. MacMahon. -Ethnic Differences in the Prevalence of Anencephaly, and Spina Bifida in

Boston. Massachusetts? New England Journal ofMedicii re277: 1119-1123,1967.

Palfrey,. J.. Mervis. and J. Butler. "New Directions in the Evaluation and Education of Handicapped

Children? New England Journal of Medicine 298: 819-424.1978.

Pleas. I. In The Care of anldren with Chronic Illness. Columbus, Oh.: Report of the 67th Ross Conference

on Pediatric Research. Moore, T. (Ed.). Ross Laboratories, 1975.

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preen:nod at the American Palintric Association. Atlanta.. Ga.. April 1979.

353

3 62
SECTION HI

ACCESS TO CARE

CHILDREN'S HEALTH CARE:

TIM MYTH OF EQUAL ACCESS

by DIANA B. ntrrroN.

INTRODUCIION

Medicaid and other Federal programs have resulted in significant gains

in both health and health care among the poor. Mortality rates for all age

groups have declined fairly steadily over the last decade, with much of the

reduction occurring in diseases that are concentrated disproportionately

among the poor ( I). The gaps in physician utilization rates between poor

and nonpoor have also o narrowed igrtiflcantly. The traditional direct relationshir between income and use has been replaced by a U-shaped

pattern, vrith the lowest rates occurring among middle-income groups (2).

Since 1969, the poor have actually used more care than the rich. By 1975, the differential had grown to 1.5 visits per yearpeople with family

incomes below $3,000 averaged 6.4 visits per year, compared with 4.9

visits for those with family imonies of $15,000 or more (3). But these

gains, while important, do not tell the whole story. The focus of concerns in health policy has also shifted substantially

during the last decade. As economist RitaCampbell has observed, "In the

opinion of many well-informed economists, the poor under Medicaid do

have access to adequate medical care, with the exception of sonic rural

poor and children ofrelatively few urban poor" (4). Reviewing a variety

of evidence, she claims to rebut the argument that the poor do not have

access to adequate medical care. Other observers carry the argument

farther, suggesting that the poor may use some services excessively (5, 6).

Problems of overutilization now seem to l'>e of greater concern to many

than problem -- underutilization.

This shit Ling focus is not merely the result of increases in utilization

rates among the poor such as those noted above. Underlying it are some

larger issues and related political agendas. For example, the mounting

pressure to control runaway medical care costs and the backlash in public

sentiment against Government programs in general and the Great Society

programs of the sixties in particular, all point toward cutbacks in public

"Dr. Dutton is an assistant professor with the Department of Family. Community. and Preventive

Medione of the Division of Health Services Research in Stanford. California 94305.

357

363
funding for health care. If the major access problems are solvedindeed if the problem is now excessive utii:.:ationthen whet.: better to cut Government funding and involvement than in programs for the poor? Opponents of universal national health insurance also find the new utilization statistics to be valuable political ammunition. The argument is straightforward: if access problems no longer exist, then the current approach has clearly "worked" and there is no need for a major national program. The explicit intent of Campbell's review, for instance, is to counter "the traditional arguments for compulsory comprehensive national health insurance" (4). She argues instead for policies which include more "personal responsibility" for health, for the retention perhaps with the addition of small copaymentsof Medicare and Medicaid, and various forms of deregulation designed to increase "competition" among health providers. It is important to understand the political context in which the "access question" is currently being debated, for the data (contrary to convention- al academic wisdom) do not speak for themselves_ They are amenable to varying interpretations and lead to widely diverge:at conclusions. This paper will argue that access problems have not yet been solved, particularly for children_ Unequal access is evident in statistics on use of health care, use in relation to medical need, the types of health care sources used, and the degree of difficulty involved in getting care. The sharpest differences, as in the past, are by income and race, although there is also significant variation between rural and urban areas and among different regions of the country. In reaching these conclusions, the paper reviews existing national data as well as findings from smaller scale studies pertinent to access, and provides new analyses of data from a major national survey (conducted in 1976 by the Center for Health Administration Studies). It also presents new results from a study of different ambulatory care settings in Washington.: D.C. that allow detailed analysis of the impact of particular barriers. In all of these data sources, there is evidence of per'asive problems in both the quantity and quality of health care available to the poor and minorities.

Defining Access and Equity

Access can be measured in many different ways. It can refer to the process of gaining accessthe distance traveled to the provider of care, the ease of getting an appointment, the office waiting timeor it can refer to the outcome of this processthe actual number and type of health care visits that occur, and the patient's satisfaction with the care received. Unmet medical needs are another kind of outcome, indicating inadequate access. Measures of the access process reflect directly the degree of difficulty in obtaining carealthough the significance of a given access barrier (office waiting time, for example) varies with the urgency of medical need (7). Use measures indicating the outcome of access are even more dependent on medical need and vary in relation to the underlying distribution of illness_

358 3 4,-4
Concepts such as medical need and measures of the process and

outcome of access cannot be translated into precise empirical terms. Nevertheless, they represent theoretical issues which are essential in

defining "equitable access" to health care. Even crude indicators of these

concepts are useful in assessing the nature and magnitude of inequalities

in access.

In this context, equality, too, is subject to varying interpretations. Most would agree that equal access should not mean absolute equality, with

everyone getting the same amount and type of medical care regardless of need. In health care, unlike many other social arenas, there is a compelling

case for distributing services (or at least the opportunity for such services) according to need (8). Crounds for this case may be pragmaticwith

health care viewed as an investment in the health -id productivity of the populationor humanitarian with health care viewedas part of society's commitment to minimal standards of respect and human dignity (1). On

the other hand, strong partisans of free enterprise argue that health care

should be distributed in the same manner as other "consumer goods"in

relation to some measure of individual social worth (usually income) (9); but this seems to be a minority view. Equal access .) care according to medical need has become a widely accepted societal goal. This goal has been made explicit for public programs: the National Colmunission for the Protection of Human Subjects of Biomedical and Behavioral Research

recommended in its final report that "eligibility for, and the range of, health services provided ZI-Tkder programs conducted or supported by DHEW should be determined on the basis of the health care needs of

the persons served" (10).

THE HEALTH GAP: MORTALITY RATES

AND HEALTH STATUS OF

POOR AND MINORITY CHILDREN

It is worth calling attention at the outszt to who the poor are, for there

are some widespread misconceptions.' Half of the poor are children under age 22. Two-thir.as are white, and more than one-third live in rural areas. They are heavily concentrated in the South, where Medicaid coverage is

least adequate (1). This inadequacy, along with problems of inaccessibility

and other institutional and cultural barriers, is responsible for very low

rates of utilization in the rural South and for some of the highest rates of morb:dity and mortality in the country.

Mortality

Infant mortality rates remain substantially higher among nonwhites

than whites, despite improvements for both. In fact, between 1950 and

1 In this par-a-. -poverty- will refer either to the Census Bureau definition of poverty or to the

approximate family income equivalent of that levelalthough this may understate the number of people whc live deprived conditions_ For a review of weaknesses in the official measures of poverty, see I I . 359
1974, the overall decline has been greater for whites than for blacks (1),

thus the gap has actually widened. Infant mortality is also strongly related

to poverty. The infant mortality rate was 30.2 among residents of poverty

areas of 19 large cities in 1969-71, compared with 19.7 in the nonpoverty

areas (12). That is, rates were 50 percent higher in the poor areas than in

the more affluent areas. The compound effects of both race and poverty produce even larger disparitiesinfant mortality rates among minority

residents of the poverty areas were almost double those of white residents

of nonpoverty areas (33.4 versus 17.4). There is also great variation in

infant mortality rates in different regions of the country. The South, which

has the lowest per capita personal income, has the highest infant mortality

rates (13). Despite the declining infant mortality rates, there has been no reduction

in the proportion of babies born prematurely or with low birth weight over

the last 25 years for either blacks or whites (14). The prevalence of low- birth-weight infants therefore remains much higher for nonwhites (15).

The lower infant mortality rater without corresponding improvements in birth weights may be due in part to the better medical care available to

disadvantaged populations through federally funded maternal and infant

care programs. Assessments of such programs ( /6) and other evidence

( /7) suggest that prenatal care does improve health outcomes.

Mortality rates after infancy also vary by income and race. Racial

differences in mortality rates are greatest among children under age 5,

with rates among blacks ranging from 1.5 to 23 times higher than those of

whites (see table 1). These differences exist for deaths due to illness as well

as those due to accidents, poisonings, and violence. Racial disparities in mortality rates are much narrower for the 12-17 year age group, and the

distribution between illness and other causes varies with age (table 1). Income-related differences in mortality rates, in contrast, appear to be

greater among older children, at least in aggregate data_ (No recent national data on individual mortality rates by age and income are

available.) Comparing children's mortality rates in the 10 States with the

lowest per capita incomes in 1970 and those in the 10 States with the

highest incomes, the disparity between low- and high-income States was

largest (34 percent) for children aged 5-14 years, and smallest (21 percent)

for infants (18). Poverty-related differences in children's mortality rates

appear to be diminishing, albeit very slowly. For adults, however, the

differences have actually widened since 1960.

Disability and Health Status

The best overall measures of general health are disability days and self- assessed health status. These measures indicate the impact of health

problems, reflecting their perceived severity as well as the degree to which

they interfere with normal activities. Both children" disability days and reported health status reveal large

differences by it e:-"ine. These differences become much more pronounced with age, as the multiple hardships of a life of povertyincluding

inadequate medical caretake their toll (12). In 1977, children under 6 in

360
TABLE 1.110111111Y ROM DIN b WWI Sad *NSW CMOs for Chit* YNrs Ago end (Indic According to Ra and

Age: UMW &Mg 1970

Us* 1 year

1-5 gets

6-11 pars

12-17 pars

DWI PI 1°X 66611 44111(1°n

Dims SW A Ala*

4111110ne Monk %Noce

Ask

lab Bid elackalt Olick/Whit elark4h6

Rsilt

135.6 301.4 22 131.4 2 9 1.6 2.2 42

5.8 9.3 1.6 3.2 4.7 1.5 26 4.6 1.8

29 4.0 1.4 1.5 1.6 1.1 1.4 24 1.7

5.9 62 1,1 1.7 2.5

IlTICCU OrA

o coded to the Egh Rti o Assam oe

1.5 42 a7 0,9

000496

n i oMoUnh

E800-E99P

SOURCE litesy c, 1979,111C,datfromtheayabiolVit4Statistict

9.8 2.3
the poorest families had almost twice as many bed disability days as those

in the highest income category, and a third more restricted activity days

(see table 2). Parents' assessments of their children's health mirror these

figures. Among the highest income families, 70 percent of children under 17 were reported to be in "excellent" health, compared with only 41

percent of children in the lowest income families (table 3). Findings from

clinical examinations reveal the same inverse relation to income as do

parental reports. Again race compounds the effects of poverty-black

children were reported to be in poorer health than white children

regardless of income ( I 9). Another index of clinical illness is hospitalization. in general, the more

serious the illness, the more likely hospitnli77tion and the longer the hospital stay (although there are obviously many exceptions. to this general rule). As table 4 shows, patterns of hospitalization are very

different depending on income and race. For instance, the number of

TABLE 2 Days of Disability Per child Per Year by Income and Age:

U.S., 1977

Under Age 6 Ages 6 to 16

Family income

Restricted

Activity Days

Bed

MAY*

Restricted

Activity DaysBed

Days

School-Loss

Days

Ail incomes' 12.3 5.7 10.7 5.0 5.4

Less than $5,000 15.9 9.0 13.0 6.3 6.7

$5.000-9,999 11.3 5.8 11.4 5.3 5.8

Si 0.000-14.999 11.7 4.9 10.7 4.9 5.3

$15.000-24.999 12.2 5.1 10.6 4.9 5.1

525.000 and over 12.1 4.7 9.9 4.3 4.7

'Includes individuals whose family income is unknown.

NOTE: Data are based on household interviews of the civilian noninstitutionalized population.

SOURCE: Data from the 1977 Health Interview Survey CHAP, p. 30.

TABLE 3. Petards' Assessment of Health of Children Under Age 17 According

to Family income: U.S., 1676 (Percent)

Level of Health

Family Income Excellent Good Fair and Poor

All incomes 58.8 36.4 4.3

Less than 55,000 412 49.9 8.3

55.000-59,999 49.7 44.4 5.5

510.000 - 514.999 s 59.8 35.8 4.1

515.000 or more 69.6 27.4 2.6

NOTE: Data are based on household interviews of the civilian noninstitutionalized population.

SOURCE: DHEW. Health: United Slates, 1978, December 1979. p. 234.

362 3 c
TAME 4. Number of Olechamee hum Sivorf-8!.y Hospital le, Number of Days of Cave, and Ammo, Lange of Shay for Children under Age 17 by

lacome avid Ramat U.S., 1077

Dlecheiges per 100 Days per Average Children 100 Length Family incomes and Race per Year Children of Slay

Al children' 6.4 35.6 5.6

Income

Under $5,000 8.5 66.4 7.8

35,000-59,999 7.1 38.0 5.4

310,000-514.999 6.7 44.7 6.7

515,000-124.999 6.1 29.2 4.8

125.000 and over 4.8 17.2 3.6

Race

White 6.5 30.6 4.7

Nonwhite 5.8 60.7 10.5

*Includes persons wilco. tamely income is unknown.

NOTE: Data are based on household interviews of the cMUan noninstitutionalizixl population.

SOURCE: CHAP, p. 34. data from the 1977 Health interview Survey.

hospital days per child under age 17 is almost four times as great for those

in the lowest income group as m -he highest (66 days versus 17 days per 100 children), and average length .A stay is more than twice as long for both poor and minority children as for the affluent and white.2 These data, which are in marked contrast to patterns of ambulatory care, imply that health problems are both more prevalent and more serious among poor and minority children than among others.

Nutritional Deficiencies and Unmet Metrical Needs

An important contributor to the poor health of underprivileged children

is inadequate nutrition (20). In 1974, a third of all black children were

estimated to suffer from some kind of nutritional deficiency compared with less than 15 percent of white children (21). Deficiencies in six out of eight specific nutrients varied by both income and race: poor black

children had more deficiencies than poor white children on all eight measures ( 12). Dietary habits were a likely cause-the daily diet of black

children was much more likely than that of white children to include

candy, sweetened beverages, and salty snacks (19). Such habits may result not only .t..om lack of proper dietary information, but also from limited

income and a disrupted family life due to the absence of parental supervision. Almost two-thirds of children with family incomes under

2 contrast. hospitalization rates (discharges per 100 children), are slightly lower for nonwhite than

white children. perhaps indicating delays in hospitalization. Such delays may account in part for the much

longer average length of stay for minority children.

363
$3,000 in 1974 were living in single-parent families, compared to less than

5 percent of children with family incomes of $10,000 or more (22). What can medical care do about nutritional problems? One thing is to

educate people about the harmful health effects of a poor diet, but more direct forms of intervention are also possible. Jack Geiger, a. pioneering doctor who organized a clinic in a poverty-stricken area of the Mississippi Delta in the sixties, sometimes prescribed eggs, meat, milk, and vegetables as the best form of medical care that he could offer (23). Certain health problems reveal a direct link between inadequate medical care and higher levels of illness among poor and minority

children. For example, as table 5 shows, immunization rates for measles and rubella were lower in poverty areas than in nonpoverty areas, and the prevalence of infections correspondingly higher. Comparable differences have been found between whites and nonwhites (13). In a diphtheria

epidemic in San Antonio, Texas, poor and minority children suffered 12

times as much disease as children who were white and affluent (13). In addition to disease prevention, various therapeutic needs of disad- vantaged children are more likely to go unmet as well. Four times as many poor children under 18 reported some kind of unmet medical needs in

1974 as the most affluent (8.8 percent versus 2.2 percent) (unpublished data from the National Health Interview Survey). While these figures

imply relatively low levels of unmet need, certain specific problems, such

as uncorrected vision, suggest that actual levels may be higher than those

TABLE 5_ inomunization and infection Status of Children According to Specific Diseases, lietropoilten Status, and Poverty Levek U.S., 1977

Percent of Children in Each Urban-Poverty Status Group with:

Measles (1 lo 13 Years) Rubella (1 to 12 Veers)

Metropolitan Status

and Poverty Percent with

Level Vaccination

Percent with

infection

Percent with

Vaccination

Percent with

infection

Centrai cities

of SMSA 66 11 64 16

Poverty areas 56 13 58 19

Nonpoverty areas 70 10 65 16

Remaining areas of

SMSA 74 9 69 18

Poverty areas 67 11 55 25

Nonpoverty areas 75 9 70 17

NOTE: Percentages are based on population totals which differ within each age category.

SOURCE: CHAP. p. 33. data from the Center for Disease Control.

364 3 -10.
reporteid. For example, among children under 6 who needed treatment for

eye problems, 92 percent of those in low-income families did not get this

treatment; in upper income families_ the figure was substantially lower (72 percent), although certainly not ideal (24). In sum, poverty and race are still, as in the past, among the most

important risk factors for illness and early death. The joint effects of poverty and race lead to still greater risk. Assessing the overall health needs of children, Julius Richnic.nd, Surgeon General of the U.S., commented: "*.t. may seem odd to include a recommendation for adequate income in a presentation on health. However, as has repeatedly been pointed out, our major child health problemsfailure to immunize, infant mortality, undernutrition, development attrition, and development disor- dersare all compounded by poverty" (25). While the health care system is not likely to redistribute income directly, it could remedy some of the health consequences of poverty. Instead, the current distribution of services tends to exacerbate the existing pattern of poverty-related health problems.

UNEQUAL HEALTH CARE UTILIZATION

Physician utilization by the poor has increased markedly over the last decade, as noted at the outset, a testimony to the success of Medicaid and

other public programs in improving access. Yet many inequalities remain. The likelihood of receiving care (as opposed to the average number of visits) is still somewhat lower for the poor and minorities (3), and there are substantial gaps evident in many measures of children's utilization.

Differential Use

Both the average number of visits and the proportion of children with visits during the year vary considerably by income and race (see tables 6

and 7). Despite higher levels of disability, poor and minority children were

less lilcely to see a physician and had fewer total visits than affluent and white children, respectively. In fact, poor children under 6 were almost

twice as likely as the most affluent to have had no physician visits within

the year (12.9 percent versus 7.5 percent, respectively, had not had visits). The difference in volume of physician visits by race is also striking-2.9

visits for nonwhite children compared with 43 visits for white children. This low volume of visits could be due to access barriers, discrimination, or different patterns of practice for minority children. It is in sh

contrast to the high rates of hospitii7Ation. for such children mentioned

previously, and may be one of the contributing factors. Table 8 distinguishes the effects of income and race and shows that

each is independently associated with children's utilization. These figures reflect the major improvements in access that have occurred over the last decade, yet they also reveal persisting disparities. In 1976, poor children were still less lacely to have seen a doctor than nonpoor children regardless

371 365
TAME G. Peroso Wipe of Children with N Physician Visits in the Past Year by

Ase, farwUy inconseo and Room U.S.., 1977

Childs Age

Under 6 6-16 VW*

AN Children 11.3 31.4

Family income Lees than $5.000 12.9 35.2

55,000-39.999 13.4 36.6

510.000-514.999 11.0 32.1

$15.000-324.999 9.2 28.8

$25.000 and over 7.5 24.8

Race

White 10.7 30.3

Nonwhite 14.3 36.6

NOTE: Data are based on household interviewsof the civilian noninstitutionallzed population.

SOURCE: CHAP. pp. 37-8, data from the 1977 Health interview Survey.

TABLE 7. Number of Physic:lett Visits Per Child under 17 per Year by Family

income and Rao e: U.S., 1977

All children 4.1

Family Income Less than $5.000 4.1

S5.000-39.999 3.4

S10.004-314,999 4.1

$15.000-$24.999 4.4

$25,000 and aver 4.6

Race

White 4.3

Nonwhite 2.9

NOTE: Data are based on household interviews of the civilian bred population.

SOURCE: CHAP. p 36-37 -Leta frc.cn the 1977 Health Interview Survey.

TABLE S. Percent of Children under Age 17 with No Doctor Visits in the Past

"Frown Year* by Poverty Statusland Race: U.S., 1964, 1973, and 1976

While Noenvislie

Year Poor Nonpoor - Poor Pionpao.

.... 1964 28.9 14 1 39.4 24.6

1973 16-8 11.4 21.8 16.9

1976 14.5 10.6 16.3 13.7

Poverty status is based on family income. in 1964. -poor" was defined asincomes under $3.000; in

1973, under 56.000; aria in 1976. under 57.000.

SOURCE: Adapted from unpublished data from the Health Interview 5.1:_aveq. Supplemental table 3

to aonald Wilson and Elijah White. -Changes in Morbidity. Disability and Utilization Differentials

between the Poor and Nonpoor- Medical Care. August 1977, VC 4S. No. 13.

366

If 32
of race, just as nonwhite children were less likely to have seen a doctor

regardless of poverty status. Why are the differentials in children's utilization rates greater than

those for the population as a whole? The main reason is probably that children's use measures are less confounded by differential illness levels

than are measures of adults' use because disparities in illness between rich

and poor are generally smaller for children than for adults (26). Children's use rates are thus more sensitive to the effects of access barriers and so

tend to reflect unequail. distribution of such barriers by income and race. Patterns of use reflect many thingsthe underlying distribution of

illness, the difficulties people face in gaining access to the health care

system, their motivation and ability to overcome these difficulties, the

incentives of physicians to encourage different kinds of services, and the organizational structure which may or may not accommodate given patterns of care. The impact of these factors varies among different measures of use.

An important distinction is between patient-controlled az d provider- controlled measures of use. Patient-controlled measures includ t preventive visits and the initial decision to seek care in an illness c-r-.1.5ode, while physician-controlled measures include followup visits, medication, and

hospitalization. Patient-controlled measures are more likely to reflect the effects of organizational and financial barriers to access as well as

patients' attitudes toward health care. In contrast, physician-controlled measures are generally more closely related to the severity of the illness conditions.3 This distinction is helpful in interpreting differentials in use, as it begins to suggest possible reasons for such differentials. The distinction between patient- and physician-initiated visits is critical in assessing the impact of access barriers, since these barriers tend to be concentrated among tkie poor and minorities who also tend to have the highest levels of illness. When patient- and physician-controlled utilization

are merged, as in number of visits per year, the negative effects that barriers have on utilization are confounded with the positive effects of

illness, obscuring in the process. (Despite this problem, number of visits per year continues to be the single most widely used indicator of utilization.} When patient- and physician-controlled use measures are

distinguished, the effects of both barriers and illness are apparent. Patient- controlled measures generally display a strong positive relation to income CZ 34, 35), reflecting the greater impact of barriers on the poor. In

contrast, clinically mandatory procedures and other indicators of thera- peutic need usually show a strong negative relation to income, reflecting

the disproportionate illness among the poor (/2, 36). Some might argue that differential utilization does not necessarily mean

inadequate access. For children, however, access can be judged against accepted standards of health monitoring. Most medical authorities agree

that children should be examined at least four times during the first year

awhile various nonmedical considerations do affect p' decissonxnaking (27-29). patterns of

therapeutic care are c ,riztbeless much more likely than par - initial decisions to reflect clinical severity

(30-32). Indeed. i -4a (J3) has argued that patients' initial to seek care may be virtually unrelated

to the clinical sev.... icy of the symptoms.

367
of life, and approximately once every 2 years through age 6 (37, 38), If

illness visits are also included, a conservative measure of "adequate" care

for children might be visits within 6 months for children under age 2,

within a year for children aged 2-5. and within 2 years for those aged

6-17.

The proportion of children who do not meet this standard again varies

sharply by family income, educational level, and race, as seen in table 9.

The largest differentials are by educational level. Many studies suggest

that formal education affects patterns of utilization independent of

income and race, by enhancing general coping skills, and by providing

exposure to various social institutions and to mainstream cultural values

about illness and medical care (6, 39).

Preventive care is even more strongly related to socioeconomic status.

For example. five times as many children under 17 in the lowest income

group have never had a physical exam as in the highest income group (see

:ab!e 10). Patterns of preventive care reflect both the value attached to

preventive services (relative to other uses of time and money) as well as

the degree of difficulty involved in getting care. Financial barriers,

inconvenience, and sources of care which do not emphasize prevention

pose special problems for the poor, as later sections will show. Especially

for children, the consequences of undetected medical problems are

potentially serious. Dental care is another glaring example of the maldistribution of

preventive services. Among children aged 6-16, 18 percent of those in

families with incomes below $5,000 have never been to a dentist,

compared with 3 percent of those in upper income familiesa sixfold

TABLE 9. Percent ot Children under Age 17 with "Inade- quately" Frequent Physician Visits, by Family income, Education, and Race: U.S., 1975-78

All children 14.3

Family Income Less than $5,000 17.9

$5,000-49,999 17.6

$10,000-$14.999 14.5

$15,000 or more 10.6

Education of Head of House

8 years or less 23.4

9-11 years 17.3

12 years 13.2

13-15 years 9.5

16 years or more 7.3

Race

White 13.3

Black 19.3

Other 16.1

-Adequate frequency' is defined as within 6 months for children under

age 2: within 1 year for children aged 2-5; and within 2 yearsfor children

aged 6-17.

SOURCE: Unpublished data interview Survey.

IL/

368
TAMILi 10. Percent el Ch 'khan under 17 Years Who Halve

Mawr Had a Routine Physical Esenolnetlon, by Fa stir Incense and Item U.S., 1973

All children 9.8

Family Income Lees than $3,000 20.3

$3.00049.999 13.7

$10.000-S14.999 7.1

815.000 and over 4.4

Race

White 8.9

Pacxwatitte 14.8

Note Date ars

tkPris

booed on household interviews of the civilian noninetitu- lesd population.

SOURCE: NCHS 10: 110,1977. p. 27.

difference (13). Dental care is also much less common among black

children and those who live in rural areas, especially in the South (13). The health consequences of these disparities are evident in the prevalence of dental caries and also in the nature of dental visits. Sixty-one percent of

the visits of upper income persons during 1971-74 were for cleaning or checkups compared with 24 percent of the visits of the low-income group

(24). In contrast, the most common type of dental care among the poor was drastic remedial treatment such as pulling a tooth or other surgery. (Such treatments were five times as common among the poor as among

the upper income group.)

Use in Relation to Need

Equity of access to preventive care an be assessed directly from rates of preventive utilization. Equity of access to care for illness, on the other hand, can best be assessed in relation to medical need. Th=e are several ways of doing this: a ratio relating use to need can be calculated; or the

effects of varying levels of need can be taken into account statistically by

adjusting use rates for health needs. Other indicators of use in relation to need include the proportion of people who saw a doctor after being

advised to by friends, and the clerical "necessity" of visits (as judged by physicians). All of these different approaches reveal discrepancies by

income r. nd race.

One indicator which was designed to measure medically "appropriate"

levels of use relative to need is the symptoms-response ratio (40).4 According to this indicator (adjusted for age and sex), access to health

care for low-income groups has improved considerably since the 1960's

relative to high-income groups. In 1963, low-income persons had 20

percent "too few" visits relative to their reported symptoms, while high4This ratio is based on the number of health care visits reported in a household survey in response to the

presence of 15 symptoms, compared to the number of visits a panel of physicians says -should- our for

that number and type of symptoms.

3 .5- 369
income persons had 4 percent "too many." By 1976, all income groups had "too many" visits, although the low-income groups still had fewer

visits than the high- incomw groups (4 perttnt versus 7 percent too many)

(41). While these figures would suggest that the poor are no longer medically

deprived, a number of methodological problems cast doubt on the validity

of the symptoms-response ratio as a measure of use in relation to need.

Since it is used fairly widely, these problems are worth noting. One is that

it ignores prevewive care needs (41). It is also dependent on respondent

recognition and reporting of illness symptoms, and people who do not

report symptoms are excluded from the computations. Further, it does not

reflect *he varying severity of symptoms, nor do the physician judgments about .,?propriate use rates account for the implications of interactions

among symptoms or symptom-complexes (42). For all of these reasons,

the actual degree of illness among the poor may be underestimated by the

symptoms reported. If so, physician estimates of "appropriate" use rates

for the poor are correspondingly understated, and Lite symptoms-response

ratio provides a misleadingly favorable picture of the poor's use in relation

to need. A more satisfactory measure of use relative need is the "usedisability" ratio (40). In this ratio, the number -"hysician visits in a given time period is divided by the number of usability days in that period. Functional disability, as noted previously, is the most comprehen- sive measure of the impact of illness. hence the use-disability ratio is

probably a better index of access relative to overall need compared to the

symptoms-response ratio. Like other measures of access, the use-disability ratio reveals disparities by many factorsincome, race, region of the country, rural-urban

location, and others. Yet poverty is often the dominant factor. For

example, comparing the use-disability ratios of selected income, residence,

race, and age categories, poverty is the most important overall determi- nant of use relative to need (see table 11).5 Race, poverty, and old age

together are a devastating combination: the poor urban black elderly had

the lowest use-disability ratio of all (3.55), while the more affluent white

urban elderly had the highest ratio (21.32)more than a sixfold

difference.

Table 12 shows the use-disability ratios for different income groups in

1963 and 1974-76, based on two set,arate national samples (NCHS and

CHAS). According the CHAS sample, the relative position of the poor has

improved since 1963, although low-income persons still had about a third

fewer visits in 1974-76 than high-income persons relative to need. In

contrast. the NCHS sample indicates no improvement at all in the relative

position of the poor. The affluent had twice as many visits relative to need

as the poor in 1963 and also in 1974-76.

5These data are from the 1970 survey rather than the 1976 survey because comparable categories were

not reported for the 1976 data: moreover. all use-disability ratios based on the 1976 data are reported only

in age-ex adjusted form.

370
TAME 11. Nowak:km Visits In Two Weeks per 103 Disability Days r. Ttro Weeks by Poverty Level by ROM- dance by M by Apia CHAS, 1970

Characteristic

Use-Disability Ratio

Above poverty level Urban. white. 65 and over 21.32

Urban. white, under 65 18.84

Urban. nonwhite, under 65 15.45

Rural. white. 65 and over 15.19

Rural. white. under 65 14.08

Below poverty level Urban. nonwhite, under 65 13.07

Urban. white. 65 and 0% r 11.80

Rural. white. unfits 65 11.03

Rural, nonwhite, under 65 10.13

Urban. white, under 65 9.83

Rural, nonwhite. 65 and over 8.04

Rural. white, 65 and over 7.15

Urban, nonwhite. 65 and over 3.55

SOURCE: Adiry and Andersen. 1975. p. 45.

TAME 12. Physician Visits per 100 Disability Days for Persons oil AU Agee, by

Income Level: U.S., 1963 and 1974-76

Use-Dismbility Ratio Physician Vis its per

Source' income Law, 100 Disab litty Days

1963 1974-70*

NCHS Low 19 20

Middle 30 31

High 36 39

Ci aAS Low 40 33

(age and sex Middle 66 41

adjusted)6 High 79 46

'NCHS rotors to National Center for Health Statistics. U.S. Department of Health and Human

Services: CHAS refers to Center for Health Administration Studies. University of Illinois. Chicago.

zIncorne groups were deflned as follows:

Low: 1963 M.' 043.999.1974 -76 046.499 (NCHS); 0-57.999 both years (CHAS)

Middle: 1963 84.00046.999. 1974-76 u $6.500412.999 (NCHS); S8.000414,999 both years

Higlx 1963

(CHAS)57.000 + 1974-76 in 513.0004- (NCHS); 515.000 + both years (CHAS).

3Both NCHS and CHAS estimates exclude inpatient visits. NCHSestimates include telephone calls to

physicians which are excluded in CHAS estimates. 41974 for NCHS; 1976 for CHAS. sAcilueted to the age and sex distribution of the middle-income group in the CHAS sample. 1963.

SOURCE: Adapted from Andersen, 1978. page 461.

371
This discrepancy between the tv c samples may be due to various methodological diff.. -ences between the NCHS and CHAS surveys in

specifying disability days. Most notably, the NCHS survey included

hospital days in total disability days and the CHAS survey did not. Since hospital days have increased substantially among the poor since 1963 (due

largely to improved public coverage), this might result in higher estimates of disability among the poor in 1974-76 in the NCHS sample than in the CHAS sample and, hence, a lower use-disability ratio. (It might also

explain why the CHAS use-disability ratios were lower in 1976 than in

1963.) Higher estimates of disability among the poor in the NCHS sample

in 't 974-76 might suggest that the earlier disability figures were underesti- mated, but they give no obvious reason to doubt the validity of the 1974-76 NCHS estimates. Indeed, as Andersen (41) points out, less comprehensive sickness benefits among low-income workers might even

cause their need, as represented by disability days, to be understated. Nor has the po ition of poor children improved relative to the more

affluent, as reflected in their respective use-disability ratios (see table 13). The ratios for nonpoor children were almost 30 percent higher than those

for poor children in 1976exactly the same as in 1964! According to this measure of access relative to need, then, not only are poor children and adults at substantial disadvantage compared with the rest of the

population, but their situation has not measurably improved since 1963. Some contradictory evidence should be noted. Aday and colleagues (43) report use-disability ratios based on the same CHAS 1976 survey which

show almost no differences by incomein contrast to the sharp income gradient in the ratios reported by Andersen (41) ( and shown in table 14).

TABLE 13. Physician Visits, Restricted Activ::y Days and Uss-Disability Ratios

for Chikiren under 17 Years by Poverty Status: U.S.. 1964, 1973. and 1976

Year

income Level 1964 1973 1976

Poor Children,

Visits2 2.3 3.8 3.8

Restricted Activity Days 8.2 12.6 12.2

Use-Disability Ratios 28 30 31

Nonpoor Children Visits2 4.0 4.3 4.2

Restricted Activity Days 11.1 10.2 10.6

Use-Disability RatIc3 36 42 40

Ratio of Use-Disability Ratios: Nonpoor/ Poor 1.29 1.40 1.29

iDellnitions of poor and -ionpoor are based on family income. and divided at 33.000 in 1964. at 36.000 in 1973 and at 37.000 in 1976.

=Mesa' include all physician visits per year per child under 17.

'Use-disability ratios are calculated as the ratio of visits to restricted activity days times 100.

SOURCE: Adapted from unp .bushed data from the Health Interview Survey. Supplemental tables 4 and 7 to Ronald Wilson and Elijah White, "Changes in Morbidity. Disability. and Utilization Differentials between the Poor z rid Nonpoor." Medical Care, August 1977, Vol. 15. No. e.

372
This dis' crepz.ncy appears to be due to several ilifferences in the way the ratios were calculated. The most significant is that Aday et a/., excluded from their calculations people who had no disability days in the previous year and also those who had more than 100 disability days (i!1 order to exclude people whose visits were likely to be preventive and those who had chronic activity limi .lion, respectively). These exclusions eliminated more than half of the entire sample, probably predominantly people at both extremes of the income range (because people with no disability tend

to be affluent while those with a great deal of disability tend to be poor). It is therefore not surprising that use-disability ratios for the remaining subsetwhich presumably contains a disproportionate number c middle- income individualsdo not reveal large differences by income.: towever, it is not clear that this finding is as meaningful as the ratios originally reported by Andersen, which are based on the full national sample with

no exclusions of people with high or low disability. A sample representing the full spectrum of incomes would -cern to provide a more appropriate basis for judging the overall equity o ,ealth care distribution in relation to need.6

Other ways of measuring use relati. to need ,vide further evidence of differential access. For example, Davis and Reynolds (45) adjusted visit rates statistically to account for the m,--re serious health problems of the poor.? For most age gioups, this adjustment led to a striking change: instead of U-shaped utilization patterns, with the highest rates among the poor and the affluent, visit rates increased uniformly with income. For children, there was very little change: both before and after adju:

TAME 141. Medical Severny Index by Poorly Laval and Rae= CHAS National Sample, 1976

Medical Severity

Family Income and Race

Percent Electhre

Care/Not a Lot

of Worry

Percent Mandatory Care /Ceases a Lot

of Worry

Family Income Less than 58,000 27 30 $8,000-314,999 26 26 $15.000 or more 33 29

Race

White 29 25 Nonwhite 26 30

SOURCE: Adapte-- Aday et at. 1980. pp_ 209-210.

6Recent data. from Los Angeles are also at odds with the n.aticrial trends in use relative to ability

indicated in taoles 12 and '3. Compared with the national figures, awe Los Angeles data suggest a greater

improvement in the relative position of the poor since 1963 and a much narrower income differential in /977 (44). Again, however, people with no disability days are excluded from the calculations, thus

reducing the range of upper-income individuals represented_

?Adjusted visit rates for different age groups wee estimated from regression equations which included

measures of disability and chronic conditionS.iiiiiell as income level and public assistance (45),

373

:15
poor children had the lowest utilization and visit rates tended generally to

increase with income. (Adjustment probably had a smaller effect on

children's ratem: than on adults' because, as noted earlier, the health

differentials between rich and poor children are smaller than between rich

and poor adults.) Another measure of use relative to need is the proportion of people

who, having been advised by family or friends to see a doctor about illness

symptoms, then actually saw a doctor. Although rates for all groups wen:

fairly high, they varied as usual by income and race. People with family

-omen below S5,000 were least likely to see the doctor when advised (78

pc: 19, while those with incomes over $15.000 were most likely (88

perccat); the figures for nonwhites and whites were 75 percent and 83

percent. respectively. When asked why they did not seek care, both the

poor and minorities were far more likely than the rest of the population to

cite money or transportation problems. These reasons were given by 14

percent of people with incomes under $5,000, compared with less than I

percent of those with incomes of $15,000 or more (3). Furthermore, when the poor do seek care, it is more likely to be for

medically serious conditions than for elective care. Data from the CHAS

1970 and 1976 national surveys indicate the medical urgency ofconditions

reported by people- with physician visits during the preceding year.

Conditions were ranked by an independent group of physicians from

"elective and not causing worry" to "mandatory causing a lot of worry:'8

Table 14 compares the percent c "elective" and "mandatory" -,-isits for

the poor and nonpoor and for whites and minorities. It is clear that the

poor and minorities were generally more likely to have visits rated

medically mandatory, while people who went white and not poor were

more likely to have elective visits. Further, within every category of race

and residence, the poor had less elective care than the nonpoor and more

mandatory care (table 15). Race, too, was ac independent determinant at

least of mandatory care- minorities had a higher percent of mandatory

visits than whites for all categories of residence and poverty. Overall, the

highest percent mandatory care was for poor minorities living in rural

areas while the lowest percent mandatory was for nonpoor whites living in

urban areasthe classic pattern.

Summary and a Dissenting View

By most measures of utilization, poor and minority children are still at a

disadvantage in comparison to the rest of the population. They have less

access to preventive services, get less care relative to health needs, and

have more serious illness by the time they do get care.

Not all investigators would agree with these conclusions. Andersen and

Aday (46) have stated, for example, that "services are generally equitably

distributed since age and level of illness are the main determinants of the

number of services people receive." But this is a minimal criterion by

*These conditions were reported in household tnterviews but verified in most cases from the medical

records. The ranking procedures used by physicians varied somewhat between the 2 years (4a, 43).

374
TAMS 16. Nisi Noel Sem, My Index try Iteeldersoe, Pleas. and Poverty Level: CHAS lestlenel 111701

Illeeldsoce, linos, and Poverty Level

Idedlott Severity

Permed Ellaralk41

Carr Only Percent Milendniary Owe Only

Urban+

While

Above poverty 38 28

Below poverty 34 36

Nonwhite

Above poverty 45 33

Saba poverty 34 41

Aural

Whits

Above poverty 37 31

Below poverty 31 42

Nonwhite

Above poverty 34 41

Below poverty 33 44

+1970 Cleats are used since comparable data are not prOvided from the 1976 survey.

SOURCE: ACkattaCI from May and Andersen, 1975 p. 54.

which to judge equity;9 a more adequate test would seem to be whether or not the distribution of services varies according to faclors such as income

or race in addition o its relation to age and illness. By such a test, it is less clear that services are now equitably distributed. Although income and

race apparently had no significant relation to use independent of various other economic factors, income-Mated factors were strongly associated with use. For instance, after illness, the most important (and highly

significant) determinants of visit rates are the availability of a regular source of care, having insurance for doctor visits, and living in an area with a high physician-population ratioeach of which is highly dependent on race, income, and education_ These findings thus reveal some of the

specific factors which link utilization to socioeconomic status. Rather than

showing that equity has been achieved, they indicate some ofthe reasons

why it hasn't!

TWO-CLASS MEDICAL CARE

Equity of access involves not just patterns of health care utilization but also the nature and quality of the services received. In this section, we

1a add' tioas to this conceptual problem. the use of annual number of physician visits as a measure of

access is shoo questioaable. As noted previously, this measure confounds increased utilization due to dlness

with decrtmsed utilization due to access barriers. obscuring both effects. This problem is most serious when

the aim ie. as in the Aday and4Urderaen study. so analyze trends by income. same both illness and barriers

amid to be concenuased most heavily among the poor.

Z75
consider some of the more qualitative aspects of access which may

underlie differential utilization. Probably the most important of these is

the source of medical care.

A Regular Source and a Regular Provider

Many studies have shown that having a regular source increases the

likelihood of seeking care, even adjusting for need and other factors (47). A regular primary care doctor should, in theory, deliver appropriate preventive care, monitor health status, coordinate a patient's specialty medical services, and in ger...tral provide more effective care because of the knowledge and trust built up over time. Data from the CHAS 1976

national survey suggest, in fact, that having a regular source of care is more closely related to access than either poverty or race (48) and is also more important in determining whether medically "appropriate" utilization occurs (40). Poor and minority children are much less likely than other children to have a have a regular source of care (49). Nationally, 18.1 percent of children with family incomes under $5,000 had no regular source of care

in 1974 compared with 5.8 percent of children with family incomes of S15,000 or more, with comparable differences by race (see table 16). Further, among those who did have a regular source, poor and minority

children were less likely to have an established relationship with a particular doctor as the regular provider, and still less likely to have such a

zlationsi..ip with a medical specialist. l°

Different Sources for Different Children

Poor and minority children are not only less likely to have a regular source of care than other chikiren, but the sources they do have are more Wray to be hospital clinics than private doctors. In 1974, hospital clinics were the usual source of care.: for almost 20 percent of all black children

and for only 3 percent of all white children (see table 17). Unpublished

data from the CHAS 1976 national survey suggest that the figure is even higher for minority children living in urban areas: 28 percent of all nonwhite children under 18 (excluding rural Southern black children) were reported to depend on a hospital outpatient department or emergency rcom as a regular source. Numerous local studies have found

similar patterns of care by income and race (49, 5Z 53). The distribution of visits to various sources resembles the patterns of

regular sources, with comparable income and racial differences in the use

1°ibis is not so imply that all children should see specialists; generalise: may provide better primary care

than specialises in many cases. 'There is also evidence suggesting that as least in some settings. specialists

may deliver higher quality care overall (54 51). In the absence ofCOOCkinVe evidence. equity requires that

access to medical careincluding specialty servicesbe related to health needs and not ability to pay.

Moreover cud, access may have symbolic importance. rqpirdlems of its impact on health outcomes.

376

38-
TAMILS 18. Percent id Chi Mee under Age 1 voills a leagues, lieurce, a Regular Closter, and a Neguler lipechdielt, by Pandly inoome and Room U.S., 1874

Pearity lamene and Rene

Percent of

Children ens No

Meader

llource

Of Those MIN a Regular Itourcec

Percent wills

a fleguier Doctor

Percent with

a Regular Special**

Al children 9.7 88.0 36.0

Family income Lees than 85000 18.1 76.8 23.7

85.000-119.999 12.5 85.1 30.0

810.000-814.999 7.2 90.7 37.0

$15,000 or more 5.8 92.0 43.9

Rao*

White 8.4 91.0 37.1

140.twhite 17.3 69.2 27.2

SOURCE: RICKS. unpublished data from the Health interview Survey (from M. G. Kamer).

TAME 17. Percent of Children uspo'::. asp, 1$ wills Oillerent Reguier ISOUrCelli of Came by Faurdty MOWN. wain Mom U.S., 1974

Fondly income and Race

Type of Regular 350411'0111

Private

Doctor Pkisplbd

CNrMc Other

Al Children 78.3 5.6 2.9

Fenny Income Lees than 85,000 60.9 12.3 5.8

85,000-89.999 72.8 7.6 3.9

810,000-514.999 82.3 4.4 2.4

815,000 or more 86.7 2.7 1.5

Race

White 83.5 3.4 2.4

Mack 54.4 18.6 5.9

'Exc.:des chlkiren without a regular source or with unknown sources.

SOURCE pacms. unpublished data from the Heeith Interview Survey.

of doctors versus hospital clinics (see table 18)." These figures do reveal an interesting difference in patterns of access to telephone contact with physicians: roughly twice as many children who arc white and affluent had telephone contacts as those who are black and poor. The vast majority of poor and minority children, in fact, have no telephone

11Differenoes were greater for hospital outpatient depsrunents than for emergency rooms_ Outpatient

departments were much more likely to be used by the poor, the black. and the central city child, whereas

emergency rooms were used to a comparaMe extent by children of all types (24).

377
TAME 1111. Percent of Physician Wells of Children under Age 10 According lo Source or Place of Cam, by Fond ly income and AllOIC U.S., Aver- age Antes' 111175-711

Faunity Income an! Race

Percent et chlidren's visits eocurtrogp

in Doctors

°Stool

In Hospital Oulipatilent Sy Telephone

AN Children 64.0 13.1 17.8

FacCay Income Lem*, Evan $5.000 55.8 23.0 11.1

$5.000 - $9.999 57.4 20.7 13.3 810,000-814.999 65.1 12.5 18.3 $15,000 or more 67.1 9.3 20.0

Race

White 65.3 11.9 18.2

Black 50.9 29.1 8.5

'includes private doctors office. doctors clinic. and group practice. alncludes hospital outpatient departments and emergency rooms.

NOTE: Data are bowed on household inesivismis of a sample of tree civilian noninstitutionalized

population.

SOURCE: ONEVV. Health: United States. 1978. p. 270.

contacts with providers at all. Ninety-four percent of all black children

and 88 percent of low-income children had no telephone contacts in 1974, compared with 75 percent and 73 percent for white and high-income

children, respectively (24). Telephone access provides maximum convenience at minimum cost; not only is advice over the phone usually free, but it may also avert the need for a subsequent office visit. Telephone access plays an especially important role in children's care, as phone contacts with providers are almost twice as common for children's care as for adults' (54). The use of different sources of care stems from a long tradition in the United States of "two-class" medical care, in which .the poor use public clinics and hospital emergency rooms and the more affluent use private doctors. Many hospitals still maintain separate "public" and "private" clinics, a vestige of the days when hospitals provided charity care for the poor. As a recent study of Duke University Medical Center found, patients attending the private clinics are typically white and covered by private insurance; those attending the hospital's "public" clinics are predominantly black and on Medicaid (55). Although Medicaid was supposed to bring an end to this dual system of care by giving the poor the financial means to gain access to "main- stream" medical care, in fact just the reverse seems to have happened. The use of hospital-based clinics has been slowly but steadily increasing (3), despite the growth of various public programs over the last decade. The mass exodus of private physicians from inner cities along with the

seemingly inexorable trend toward medical specialization has left resi- dents of many urban communities with few alternatives. Reliance on

hospital clinics as the regular source of care has increased most sharply

378

3 S
among children under age 6precisely the age ga c up thae. most needs

regular health monitoring and preventive care (12). Moreover, the relative position of the poor and minorities has worsened during the last decade with respect to access to nonhospital sources. Low-income groups have had the largest increase in overall use of hospital clinics relative to other

sources (2. 3), and minorities have had the greatest increase in dependence on emergency rooms and clinics as a regular source (12). Thus, minorities

remain more dependent on hospital clinics as a regular source of care than

any other group (12).

Quality, Accessibility, and Continuity

Do these different sources and patterns of care mean that the poor and minorities receive lower quality care? The answer to this question depends

largely on how "quality" is defined. If the definition is based on clinical standards of care, the evidence is inconsistent. ZIro and Williams (56) concluded from a review of the published literature that "the quality of health care for the disadvantaged is not strikingly poorer than care for the nondisadvantaged." They added, however, that "in view of demonstrable

shortcomings in the quality of health care in general, this is not viewed as a positive statement." 12

If the definition of quality is based instead on criteria for primary care, it is clear that many of the institutional settings used predominantly by the poor are deficient.° A report by the Institute of Medicine (59) listed five

attributes of good primary care: accessibility, comprehensiveness, coordi- nation, continuity, and accountability. Accessibility of health care has been a major problem in many

disadvantaged and rue-al areas. Various public programs such as the Community Health Center program and the Maternal and Child Health Program have made important inroads into problems of accessibility,I4yet many poor communities remain significantly underserved. Community

health centers (including migrant health centers) currently provide care

I2Some recent evidence suggests that the quality of care in certain hospital-based settings may be higher

than that of many solo practitioners. For example, a study of different ambulatory care settings in Washington. D.C. suggests that health outcomes were significantly better for children using pediatric

specialty clinics as a regular source of careboth in hospitals and in the prepaid groupthan for those

using private solo practitioners (57). The differences were most lively attributable to the specialized care

provided in such clinics. and to the supervision of residents in training in the hospital settings. Reidel and Reidel (58). reporting data from the Connecticut Ambulatory Care Study. also found that the

performance of hospital-based general practitioners accords more closely with specified medical standards

than that of doctors in solo practiceincluding private internists and pediatricians as well as gene al practitioners. However, there is no way of knowing nationally how many hospital-based doctors conform

to such standards. particalarly in clinics that serve as sources of p-imary care for the disadvantaged

"Notabie exceptions include "reformed" hospital outpatient clinics, health department primary care

centers. and clinics established under Federal programs for rural and migrant cat t (60). Although

expanding, they still play a relatively limited role in the overall needs of the poor anc will not be

discussed in any detail here.

14In addition to improving accessibility (61). these programs have also helped to promote appropriate patterns of ambulatory care use by the poor, and some have succeeded in rect.cing hospitalization and

surgical rates and improving various aspects of health status ( I. 6Z 63).

379

385
for about 4.8 million people, mainly in the very poor underserved areas but this is less than one-fifth of the 26 to 30 million residents of rural and

inner city areas estimated to be without a regular source of primary care in

the private sector (Office of the Assistant Secretary for Planning and

Evaluation-Health). When financial and structural barriers to access have been removed, utilization has often increased substantially. A good example is a study by

Snyder and colleagues (64) comparing patterns of use in migrant workers'

camps in California before and aft,..-r medical clinics were established in

the camps. The clinics were open during nonworking hours, they were

close by, and the care was free: access barriers were essentially eliminated.

The impact on utilization was dramatic. The percent of reported illness for

which care was received rose from 43 percent before the clinics were open

to 70 percent afterward, with even greater increases in the use of

preventive care. Various studies of experimental programs in which poverty populations

were enrolled in prepaid group practices have shown that, after initial

surges, use rates of the low-income enrollees dropped to levels comparable

to, but not below, regular plans' membership (65-67).15 In other programs

that have succeeded in eliminating both financial and organizational barriers, use rates among upper and lower income people have been

generally similar (68, 69). Based on the utilization levels of a group of

poverty-level families enrolled in the Kaiser prepaid group practice, Greenlick and colleagues (70) concluded that "much of the reported

difference in the behavior of poverty populations relates to differential

access to medical care."

The impact of access barriers is also evident in lower rates ofutilization

in settings with multiple barriersoften sources used predominantly by

the poor. For example, a study of ambulatory care in Washington, D.C.

found that low use rates among the poor could not be adequately

explained by financial or attitudinal factors without considering as well the barriers and other-inadequacies in the health care settings used by the

poor (72). Another study based on the same data identified the net impact of different settings on patterns of use (adjusting statistically for patient

factors) and revealed significant differences (52). Table 19 shows the basic

results of this studythe adjusted use rates for patients with different regular sources of care_ The boxes highlight consistent patterns in the

findings. Preventive care was lowest in the hospital outpatient departments and emergency rooms, where access barriers were substantial.

There were fewest barriers generally in the prepaid group clinics, which in

turn had the highest rates of patient-initiated preventive and therapeutic

care. The fee-for-service groups had the highest volume of followup

services, due presumably to the combined incentives of multispecialty

group practices and fee-for-service reimbursement.

ISNot all program= follow this pattern; data comparing use rates of Medicaid and non-Medicaid

enrollees in the Health Insurance Plan of New York, a large prepaid system. indicated higher use rates

among the non-Medicaid (upper income) members (7!). Law use rates by the Medicaid members might

result from nonfinancial barriers or. as the authors note, might reflect a skewed distribution of care within

the Medicaid population. with extremely low use rates for a small fractionof this group.

380
TAU it Mad lb Robs la Os lit dokry On lap Iblo Pt aMd for a VW Pow or FaifOlohloglo,

DICAmilot rnr

Owl Iwo of Cm

FPI lob FRI Propid Pubic Haiti

Om Group ago ORM

PAIMONTROLLED

Add otil Prig* UN Rio

kr& of ropondoors chi* (0,1,2) 1,73 1.74 1.13 1.57t 1.54t

Roomy d ctlikups (leis%

to 4ovy I men% 2.48 2.681 3.07' 2.73' 216'

MOM Prot:Ok d trail Cn

Prittlity d robib to oui NOW

U INtt ; rob by acl (0-1) 0.31 0,37 0,48' 0,10 021t

Prettily cf my via to ad Rai*

In lot 6 rob by chili (0.1) 0.70 0,67 0.64' 0.74 0,75

Prottily Ott Mow hid I Oro but

w osiratoo (0.1) 0.48 0.48 013' 0.49 0,48

Prcbtaly tot c* ever *1 a Vico but

or eis wittekt (0.1) 0.33 0,40 0,59, 0.33 0.33

Pdallky tat ctikl uaw doctor tor put

it ratios (CO) 0.75 0.81 o.94t ass 0.84

PHYSCAN.CONTROLUD

AojutMd Ft:bey d Yudaton

Romig, thit fdatlai dodbrd

to twit In Not 6 Who (04)

04).* Rimy Rio

Number d *up *Itsgondtto to =I

do* by WA lod 6 month

Number of fano rialts/oAtion to ai

Fatly byofilinlot6monti

0.75 0.77 0,74 0.71 0.18

3.9 4,5 3,8 3.2 2,4t

0.9 2.2t I 1,7 1,1 1.8t

NOTE blown *PAW Lig *AM whist( d the pi* allonittectoritia lidul In gordx B tee to dotal rgenebn coal**.

For leter dam, INDIO* 1979.

MI s l y k r a M b p i * t o C m = * N W M o n od of t o ON a g e d * ido g a c b ; Mats p <0.01 q2.58) nai t Inciato

p40,10Q1.84).

s o w n C d c o,a B. "P rmdMibttorylMs Cn Rs Mont iikkal Cart VOL XVII, Mardi 1979.
Some differences between children and adults in these results are also of

interest. Adults' access to care was lower in the hospital and public clinics

than in any other setting, whereas for children using such clinics, access to most services was relatively high. A similar pattern is also evident in

national data: among children using hospital clinics as a regular source of care, use relative to disability is quite high (61 visits/100 disability days); the ratio for adults using these clinics is much lower (23 visits/100

disability days) (unpublished data from the CHAS 1976 survey). As in the Washington sample, however, these national data show that rates of preventive care were lowest among children using hospital clinics as a

regular source: 25 percent reported having had a voluntary physical examination in the last year compared with 27 percent of the children

using private doctors and 29 percent of those using other sources. Not only is access more difficult in many of the settings used by the poor, but the patterns of care that follow are often disorganized and

uncoordinated. It is not uncommon, for example, for poor families to

depend on one public clinic for well-child services, on another clinic for maternity care, and-on-the emergency room for acute care. Dual usage of public and hospital clinics, as well as more complicated patterns of care, has been extensively documented (47, 73-77). Table 20, based on an

assessment of child health services offered under EPSDT and the

Maternal and Child Health Program, vividly illustrates these complex

patterns. Only 23 percent of the low-income mothers interviewed used a

single provider setting for both sick and well care; almost as many (22

percent) reported no regular source at all (or only the emergency room), and 40 percent reported using multiple different providers for sick and well care. Ironically, it is the fragmentation of the public programs

themselves that fosters these inefficient and ineffective patterns of care. Particularly for the poor, who may lack the education and experience necessary to cope effectively with complex bureaucracies, such patterns are likely to be a major obstacle to continuity of care. Coordination and continuity of care are especially important in

facilitating patients' access to comprehensive specialty services characteristic of hospital-based care, yet are relatively rare in such settings. Services

in hospital clinics are typically episodic and disease oriented, with little coordination among the various specialty clinics, let alone with outside

agencies. Continuity may be equally limited in some public clinics, due to

the narrow range of services offered and to lack of coordination among

funding programs. Such patterns are evident in table 21, which compares various measures of continuity in different ambulatory care settings in Washington. D.C. The proportion of "regular" patients indicates that, consistent with national data, hospital clinics are serving as the major source of care for their predominantly low-income patient clientele. This is no guarantee of continuity, however. Sharing patientsa policy that often undermines continuitywas much more common in the hospital and

public clinics (along with the prepaid group) than in the two fee-for- service settings. An overall measure of continuity, the number of visits to

the regular source as a proportion of total visits, also indicates relatively

low continuity among patients of the hospital outpatient departments and

public clinics (and also solo practitioners).

382 3S
040(00161(01 0 4. C001 M20001(4 rrON1-00 tiggg21 22g221 r0 OINNrrr# 7 $ 000**,0'000s t Nt-.0000)00***00* g NNNNNONNrrrils igi 410 i $bi 111 1 011 J it' 1 'Ili I Ali 1 MI 1 111 fp
Tai 31. Wain d Col* d gm In DIM asibiaby Co WI* WON* DA 1171,

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10 O r o p G r o t , Pubic NOM Engrg Won d Pub Fob P- Clot Dapelmont Room

d plOmv %aft

070 01 ON in Vie

no 14 81 100 58 100 100

PEN d Ftlyncim

Ito tea pill* 4 26 70 50 68 100

Nair d VaIb par pime to

mph, widar a a proportion

diNi vMlb SS 71 81 60 62

80IXE Wok *did to

( 3 9t)
The degree of continuity and coordination affects not only the volume

and types of services but other aspects of care as well. Continuity appears

to have a wide range of benefits, including fuller understanding of patients' problems by physicians (78), greater patient and physician

satisfaction ( 79), and more efficient patterns of care. Hospital-based

pediatric services that have been reorganized to provide (among other

things) greater continuity of care have demonstrated such advantages. For example, Alpert et al. (80) reported that children receiving the reorganized primary pediatric services had fewer hospitalizations, operations, illness visits, and unkept appointments compared with control children receiving

traditional episodic care; experimental children also had more preventive visits, higher levels of patient satisfaction, and lower costs. Breslau and Haug (81), studying a reorganized pediatric clinic, also found evidence

that continuity allows lower rates of patient visits (which meant lower patient costs) because of more telephone communication with physicians and greater pr. tient trust.

Provider Communication and Patient Satisfaction

Effective communication between patients and providers is an essential component of good primary care, one that is frequently lacking. Insufficient information provided by doctors is the third most common

complaint about medical care, after cost and inconvenience (82). A precondition for effective coaununicatinn is adequate time for patient visits. Again, the poor who rely on hospital clinics are likely to be at a disadvantage. Such clinics are typically crowded and busy, and physicians have little time to spend counseling patients or offering preventive services

(83). Visits are frequently rushed. A study in Montreal that compared the

length of patient visits in doctors' offices with hospital clinic visits found

that for general practice and internal medicine the average time spent with physicians was almost twice as long in the private offices as in the clinics

(84). National data indicate that people seen in hospital emergent;; :ooms were twice as likely to say that doctors did not spend enough time as those

seen in physicians' offices or those who had telephone contacts(table 22). The poor and minorities were also more lacely to feel that not enough time was spent. Yet the actual time per visit (as reported in the CHAS national sample) was slightly longer among the poor and minonu .fsee the right- hand column of table 22): more low-income than high-income people, and more nonwhites than whites had visits that lasted longer than 25 minutes. This apparent paradox has several possible explanations. The data

come from two different samples that may represent somewhat different

groups. The NCHS data pertain to experiences at the site where acute

conditions were first treated, whereas the CHAS data were based on the

regular source of care. On the other hand, there may be no paradox at all. The slightly longer times spent with the poor and minorities may not have been adequate to deal with their frequently more complex health needs. Cultural barriers between doctors and patients from different social backgrounds may have further contributed to patient perceptions that doctors spent insufficient time with them.

385

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on various aspects of personal behavior, and patient satisfaction with

physicians was also low (52). Such attitudes make effective communication unlikely. National statistics reveal high levels of patient dissatisfaction with

hospital clinics, particularly emergency rooms. In the CHAS 1976 national survey. 71 percent of people who used emergency rooms as a regular source of care were more "generally dissatisfied" than the national

median, 64 percent were more dissatisfied with the "quality of care," and 60 percent were more dissatisfied with doctors' "humaneness" (43). Emergency rooms were rated lower than any other setting on all three measures. At the other extreme were private and group physicians, with

fewer patients (46 percent) "generally dissatisfied," and fewer dissatisfied with the quality of care and doctors' humaneness (about 47 percent for each).

Accountability

Mutual accountability between patients and providers is a key to good

primary care, and may be especially difficult to achieve in health care for

the disadvantaged. Major social or cultural differences between patients and providers diminish patients' influence over doctors by means of "voice," and their limited financial resources and restricted alternative

sources of care reduce their influence by the threat of "exit" (87). Hospital clinics in particular have traditionally been unresponsive to the particular cultural values and special medical needs of poor and minority patients in whose communities they are often located. Instead, such settings reflect

the prevailing "culture of medicine," delivering care that is specialized and

technologically sophisticated and that requires an increasingly complex bureaucratic organizational struct ire. As Levine (88) and others have pointed out modern medical care seems often to be more responsive to

the needs and interests of professionals and institutions than to the needs of patients. The failures of organizations in this regard are as varied as the needs and values of the patients they serve. One of the most common problems seems to be inadequate information about available sources of care.

Often, the poor are simply unaware of existing sources (89). Yet programs of active outreach have shown that it is possible not only to provide better

information but also to achieve more appropriate utilization patterns in

the process (65, 90). There is a delicate balance in being responsive to patients' unique social and cultural features and yet not creating a sense of stigma. Services that are different from those of the mainstream medical system may be viewed by some patients as inferior. Neighborhood health centers are a good

example of this dilemma. Such centers typically offer services tailored

specifically to the needs of their communities and many employ

community residents as staff members. These policies are responsive to

local interests, but they may also conflict with beliefs derived from the

larger culture.

387
A study by Skinner and colleagues (p9) illustrates such a conflict among patients who chose to use a hospital outpatient department rather than a neighborhood health center, even though the latter was closer. The major

reasons that patients continued to use the hospital clinic was its perceived

high **quality" of care. Patients who gave highest priority to convenience of access were willing to consider changing to the neighborhood health

center; those who emphasized quality of care or familiarity with the site were not willing to change. Yet there was evidence that once the hospital clinic patients had actually had personal experience with a neighborhood health center, they were satisfied with tie quality of care they received. Thus, attitudes about what constituted -*quality" medical care were the key issue. Popular attitudes are shaped by the prevailing norms in medicine, and as the authors pointed out, "almost all the information

about medicine that reaches the public domainfrom educational reports

to entertaining programsserves to emphasize the advantages of the medical center with its sophisticated equipment and highly trained staff"

(89). This kind of publicity has a pervasive influence on public attitudes about quality and is an obstacle to building institutions that are responsive

to primary health care needs. To recapitulate: medical care in the United States is still in many ways a two-class _, stem. Poor and minority children are less likely than their peers to have a regular source of care, a regular doctor, or a regular specialist, and more likely to rely on a hospital-based clinic for primary medical care. Indeed, one of the clear failures of the Medicaid and Medicare programs has been in providing the disadvantaged with access

to mainstream medical care through financial means alone: use of hospital outpatient clinics is increasing, especially among the poor and minorities. These clinics typically offer care that, although apparently comparable to

that provided in private settings on a technical level, is deficient with

respect to the goals of primary care such as accessibility, continuity, communication, and accountability.

BARRIERS TO CARE

In addition to using different sources of medical use than the more

affluent, the r or and minorities also face greater financial and organizational obstacles in seeking care. High medical expenses, inadequate

insurance coverage under Medicaid or private health insurance, long waiting times in providers' offices, inconvenient office hours, and greater distances to travel are all potential barriers to access. Such factors also

reveal how difficult the process of gaining access is, regardless of the utilization that resu!ts.16 Some of these obstacles are due to the types of settings used by the poor; others reflect differential barriers within the

same settings.

161n response to questions about specific access barriers. only 10 percent of the population reported one

or more problems in getting care in 1974; by income, the proportion ranged from 14 percent in theUalivest income group to 9 percent in the highest group (91)- However, these relatively /ow figures should be

interpreted with caution. as they are subject to the same bias toward positive responses as sates' faction data

(92).

388 v°
Financial Barriers

It is perhaps surprising that financial barriers are still an impediment to the poor in getting care, given the ever-increasing share of the Federal budget devoted to Medicaid and other publicly funded health programs. Yet for many poor and minority females, public coverage is woefully inadequate.

Medical Expenses

The high cost of medical care is the major complaint about medicine today (93). In 1975-76, 37 percent of the population expressed dissatisfac- tion with out-of-pocket medical expenses during the preceding year (82). This figure is strikingly high given that responses to c uestions about satisfaction with personal medical care are usually very positive (92). Costs are of special concern to disadvantaged groups-42 percent of the poor expressed dissatisfaction, as did 43 percent of urban blacks, and 44 percent of bisiiiikt living in the rural South (82). Costs we= atop, more likely to be a problem for the poor in actually receiving mr.tatcal care. As noted earlier, many more low-income than high-income persons said they did not get care for acute conditions because of money or transportation problems. Similarly, costs were cited as a problem in getting care during 1974 more than five times as often by the poor as by the most affluent (5.1 percent versus 0.8 percent) (91). Costs were also by far the most common reason given for letting poor children's health needs go unmet, mentioned in almost half of the cases (unpublished data from the National Health Interview Survey). Medical care expenditures were a greater burden for the poor relative to income than for the affluent During 1975, out-of-pocket health expenses were $223 for persons with annual family incomes below $3,000 (or 11 percent of income) and $257 for persons with annual family incomes above $15,000 (or less than 2 percent of income) (3).17 These figures include people who did not receive any care during the year and those who got care but did not have to pay for it (such as people fully covered by Medicaid or other programs). They therefore probably underestimate the role of costs as a barrier, because some of the poor who did not get care may have been deterred specifically by high costs. Among who incurred medical es, there were even sharper differences in the distribution of costs r tive to income (see table 23). The average annual out-of-pocket health expense for persons with expenses in 1975 ranged from 1.5 percent of family income for people with the highest incomes, to 17.3 percent of income for people with the lowest incomesa tenfold difference in the costs borne by the poor and by the affluent. Moreover, because a sizable proportion of the poor (65 percent) had some health expenses, these disproportionate costs were spread over the majority of the poor.

"Theme figures are not age-adjusted, men though the low-incomegroup contains a higher proportion of older people than the upper income group. because age adjustment masks the actors/ expenses incurred at different income levels. Actual expenses inchoate the real distribution of costs by income. vegan:11ms of ditiferessora in age composition_

389

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Issaraisce Coverage

As these figures imply, there are major gaps in both public and private

insurance coverage of health care expenses. Insurance for children's care

is particularly inadequatechildren under 17 have less coverage than

adults for most types of expenses (table 24). Fewer than half of all children under age 6 were covered for ambulatc:-.y services, the most important form of care for children.. Moreover, this insurance offered limited

protection, covering less than 20 percdrnt of private expenditures for 4hildren's visits in 1970 (94). The proportion of people with covera r:. for outpatient visits also varies widely by income, race, and region of the country. The lowest rate of coverage (38 percent) occurs among p:xiple who are poor, of Spanish

heritage and live in the Southwest, and the next lowest rate is for poor

rural Southern blacks (41 percent) (43)- Many of the poor are dependent on public programs such as Medicaid

for coverage. The affluent are more hicely to have private insurance

coverage (see table 25). Despite Medicaid, however, coverage is still least adequate where it is most neededamong the poor. As table 25 shows, the

lower the income level, the higher the proportion with no health care

coverage. For children under 18, the association with income was even stronger

the proportion with no health care coverage ranged from 27 percent among children in families with incomes less than $7,000 to 4 percent for children in families with incomes of $15,000 or more Overall, it is estimated that only about half of the poverty population is covered under Medicaid at any one time, due to eligibility restrictions and other factors (I). This would mean that at a given time in 1978, 12.5 million poor people, including 5 million poor children,18were not covered

under Medicaid. The means test for determining eligibility is degrading

Table 24- Percent al Use Population salts Seleceedi Types of Health Insurance Coverage by Ace= CHAS Plailonal Semple, 1975.

Percent at Age Group wiles Each Typo=

Type of Coverage

1-5

Yeses

5 97

Years

1a-434

Years

65 Years

or More

Outpetient visit coverago 49 51 53 90 Outpatient drug coverage 38 33 38 26

Hospital coverage 84 87 87 99

Surgical coverage 83 86 86 95

Major medical coverage 51 59 60 32

Dental coverage 19 20 20 3

SOURCE: Adapted from Aday 1980. p.

This is based on data from the Census Bureau (95) on the number of ~related' children under age IS hying in families under the poverty level in 1978 (9.722,000), adjusted for families'

movements in and out of Mechosid eligibility391
TAME 25. Type ol Health COM Coverage Stadia* Accordkm b Family income

and Ram LLS., 115715

Family

lacomme and Roos

Percent of Population von=

Private

ineuranoe

or Medicare Medicaid'

Other

pro- grains'

No

utterance

AS poisons 79.6 5.8 2.4 11.G

Family &acacia Less than $3,000 51.0 24.4 1.4 21.8

S3,000-44,999 55.4 20-9 1.2 21_3

85,000-86,999 62.8 12.4 2.6 21.0

57.000-$9,99e 75 8 4.5 3.5 15.1

S10.000-$14,999 86.8 1.6 2.9 7.7

ii5,000 or more 92.3 0.6 2.2 4.1

Pace

Vents 825 3.8 2.4 10.2

AI other 60.7 19.0 2.6 16.3

lime/mons with hiaincornes can quality for Medicaid in at least two way= (1) previous years Zncome

is esIsplo yet family dissokition or catastrophic illness could have occurred in the survey year

Pawing Mama- id use or eliabattr (2) in certain States, large families with incomes in excess of

SI 5.0M coaciqusaly forMedicaid e=werage.

'tr.-dudes trilltaty, Veterans Adrninistratko, private surgical azwerage, and professional courtesy

sonic E U.S.. Hrailis 1978t. P. 404-

and probably deters many from applying; others may qualify only after

their financial resources have been depleted by illness.

Medicaid coverage varies widely from State to State, reflecting different

States" policies on financial eligibility, range of services covered, and

benefit limits. In most States, Medicaid does not cover any of the indiret

expenses related to illness, such as the costs of transportation to the

doctor, a babysitter for children left at home, and time lost from work.

Benefit levels are lowest in the South. In 1970, Medicaid payments per

child recipient were S43 in Mississippi compared with $240 in Wisconsin

(96). Eligibility is also much more limited in the South.. Most States in the

deep South cover only about one-tenth of poor children, whereas States in

the Northeast cover nearly all poor children and near-poor (those just

above the poverty line). Comparing coverage among the poor living in five

low - income urban areas around the country, Okada and Wan (97) found

that the percent with no third-party coverage (pablic or private) ranged

from a low of 8 percent inRoxbury, Massachusetts, to a high of 38 percent

in Peninsula Charleston, South Carolina.

Levels of Medicaid benefits are also unevenly distributed among

different categories of recipients. For earlimple, children get much lower

average benefitsthan adults. Children under age 21 comprised almost half

of all Medicaid recipients in 1976, yet received only 17 percent of total

Medicaid benefits (13). Most of this difference was probably because

children were ll less than adults, and because nursing home care for the

elderly is very expensive. Other differences are more difficult to explain.

For instance, blacks get lower average payments than whites(although the

disparities are much larger among adults than children). In 1974,

392 .398
Medicaid payments to persons under age 21 averaged $130 for whites and $116 for blacks (12). Some of the largest discrepancies are by geographic region; residents of rural areas get much lower average benefits than

urban residents. In 1970, children in families with incomes below $6,000

living in rural areas had only 10 percent of their medical expenses covered by Medicaid, compared with 75 percent for such children living in central cities (96). Moreovtr, a growing number of private physicians are refusing to accept Medicaid patients. A recent survey in Mississippi found that more than half of all physicians providing direct patient care did not see Medicaid patients (98). The reason most commonly cited was inadequate

fees_

In short, financial barriers are still considerable for many of the poor in

large part because Medicaid coverage varies widely, benefits are unevenly distributed, and eligibility restrictions exclude large numbers of the poor entireiy.19

Financial Barriers in Different Settings

The irony of Medicaid's inadequate coverage is that hospital clinics, used increasingly for primary care by the poor, are among the most expensive sources of medical care- Table 26 shows the average charges in

TAISLE 26. Average Charge for Ambulatory Visits of Children under 19 and

Insurance Coverage by Medical Settings: U.S., 1976-77-

Percent of pire.enta with:

Average Charge for Ambulatory Vie Of

Persona

under

Age 192

Privale

insurance

(group or

individual

policy)

Medicaid

or

Redu=ed

Price No Cam Inmerance

All ambulatory visits 19.47 83 6 11

Medical Setting Doctor's office 17.28 85 5 10

Hospital outpatient clinic 50.69

62 19 19 Hospital emergency room 41.16

Other and unknown settings 2268 62 17 22

'1 from Aday and .Andersen (1978). p. 371. 373. and unpublished data are from the CHAS national sample. 2From Walden and Roseiter (1979). Table 4. Data are from the National Medical Care Expenditure Survey. NCHSR. first quarter 1977.

19Although the Medicaid program is plagued with many problems. other provisions ror easing the

financial burden on the poor, such as the Hill-Buxton Act and State tax exemptions for "charitable' institutions (under section 501(c)(3) of the Internal Revenue Code). have proven equally inadequate. due

to problems of enforcement. ambiguous standards, and the absence of defining regulations (99).

393

399
1976 for pediatric visits in different medical settings and the proportion of

patients with different types of financial coverage (including no coverage).

Average charges in the hospital outpatient clinics were more than double

those in private doctors' offices ($50.69 versus $17.28), yet 19 percent of

the patients using the hospital clinics (almost one out of every five) had no

insurance coverage at alL Another 20 percent were at least partially

covered by Medicaid or received care at a reduced price, but probably still

had to pay some portion of the charges out-of-pocket Initial visits were often not Covered-38 percent of the people using hospital clinics as a

regular source of care said they had to pay for the first visit to the provider

during a given year (unpublished data from the CHAS 1976 national

survey). Similar di.5parities are also revealed in local studies (52).

The cost of hospital outpatient services is often exorbitant compared

with private doctors, and, because many of the patients are on Medicaid, the Government foots much of the bill_ The result is, as Haynes and McGarvey put it a decade ago, that "the government is worried, the

private physicians are dissatisfied, the hospitals are abused, the taxpayers

are resentful, and the patients suffer" (100). They commented that "if

some genius of a devil had expended his best efforts in contriving some

situation which would achieve the maximum dissatisfaction for all

concerned, he could not have achieved more spectacular results."

The Impact of Financial Barriers on Access

There are numerous studies of the impact of financial factors on

patients' use cif health care (101-111). Such factors include insurance

coverage, coiwurance rates, deductibles, copayments, patients' income

level, and the price of care (physicians' charges or out-of-pocket costs).

Regardless of the models or methodologies employed or the types of medical settings studied, the findings with respect to price are quite

consistent not too surprising): higher prices lead people to purchase

less medical care. However, attempts to specify the "price elasticity" of demand for medical care (the reduction in use caused by an increase in

the price of care) have produced widely varying estimates. Studies

reviewed by Schweitzer (101) suggest that utilization is rather responsive

to changes in price. Research by Phelps and Newhouse (105, 106) implies

that use rates are relatively insensitive to price changes. In general, physician visits appear to be more responsive than hospitalization to

ch &lges in price or coinsurance rates (105, 112).

Data from "natural experiments" confirm the negative impact of higher

prices on ambulatory care. For example, when copayments of about 33

percent were introduced in the province of Saskatchewan, use of physician

services declined by about 6 percent (113). The introduction of a 25-

percent coinsurance rate in a large California medical clinic caused a

similar reduction in physician visits (114). Even California's 1972

"copayment experiment" imposing a S I charge on certain Medicaid

recipients lowered ambulatory care utilization (115). Although physician

visits declined by about 8 percent in the experiment, hospitalizations rates

apparently rose by 17 percent, resulting in an overall increase in program

costs (116).

394
The protective effects of insurance also provide indirect evidence that medical costs inhibit utilization among those who are not insured. For

example, a recent study in Baltimore suggests that it is now the near-poor, most of whom are ineligible for Medicaid, who have the lowest rates of use (117)- The likelihood of children's visits appears to be especially

dependent on insurance coverage. The differential between those with

coverage and those without was twice as large for children as for adults: 77 percent of children under 18 who were insured saw a doctor in 1976

compared with 57 percent for those with no insurance; the corresponding

figures for adults are 79 percent versus 69 percent (unpublished data from

the CHAS 1976 survey). There were comparable differentials in children's preventive care as well. One would expect the poor to be more sensitive to prices than the more

affluent because a given cost constitutes a larger proportion of the income of poor families. Although some sociological research supports this expectation (118), there ha- been surprisingly little economic research on the issue. Ghez and Grossman (119) provide some indirect evidence

against such a differential effect, but their findings are not conclusive.2° A

recent report by Barer, Evans, and Stoddart (112) provides evidez= that

the poor are indeed more price sensitive than the affluent, based in part on a series of studies by Beck (12(-122). Analyzing the effects of the S1.50-$2.00 copayment for physician visits introduced in Saskatchewan in 1968, Beck found that the largest response (estimated to be an 18-percent reduction in utilization) occurred among aged and low-income groups three times that of the 6-percent reduction overall- In fact, visit rates

among some people in the middle-income group actually appeared to have

increased in response to the copayment (112). Thus, because of the differing levels of price sensitivity, the copayments served to redistribute

services from the poor to the affluent. National data on use in relation to insurance coverage also suggest greater sensitivity to prices among the poor. Both the insured poor and the

insured nonpoor had higher rates of use than the uninsured, but the size of

the differentials was substantially greater among the poor for all three measures of use. In other words, without the shield of insurance coverage, prices had a greater impact on the poor. With insurance, in fact, the proportion of people with physical examinations and physician visits was about the same for the poor as for the nonpoor, whereas it was much

lower for the uninsured poor.

Organizatio' nal and Time Barriers

The poor also face a variety of nonfinancial obstacles in seeking care, many of which involve time and inconvenience. The uneven distribution

26rbey compare price dasOcity estimates derived from three different 'temples with the mean income of each sample. assuming that if there is a differential invert by income the elasticities will be lower m the

samples with higher mean incomes--which they are not. This evidence is only speculative; however, for

of price elm:deities are quite variable and the three reported are well within the usual =age of variation MX 106); also, because the estimates are from different samples they may be affected by many Scans besides income, both observed and unobserved.

395
of such barriers is another indication of the present "two-class" system of

care.

Travel Time and Office Waiting Thne

On the average, the poor and minorities spend longer getting to the

doctor than other people, as do residents of rural areas- As table 27 shows,

based on two different national samples, from 10 to 20 percent of each of

these groups travels 30 minutes or more. Estimates of travel times to

different medical settings varied, considerably between the two samples,

probably because the settings referred to in the CHAS sample were the

regular source of care whereas in theNCHS sample they were the first site

of care for acute illness_21

TABLE 27. Travel Thins lo Sous 0. IP"Tp-11 by 1Fanilly Income, Rime, Ilisclical Soling, and Locally= U.S., 1973-74 and 1979

Percent Intel Travel Time of 3D Millnutes or More:

Naglk 1973-741 CHAS 19793

All persons

Family Income Less than $5,000

$5,000- $9.999 310,000-$14,999 $15,000 or more

Race

White

Nonwhite

Location

Urban (all SMSA) Rural nonfarm I

Rural farm

Medic& Setting Doctor's office

Hospital outpatient or

emergency room

Other clinic

15

19

17

14

13

15

21

14

23

16

13

16

9

123

9

6

9

11

7

14

15

8

22

8

'The NCHS sample ie based on average annual incidence of rnadicatly attended acute conditions

with known travel times to she of first medical contact U.S.-1973-74.

=The CHAS sample is based on a sample of the U.S. populatiorc data on travel times were reported

about the individual's mauler source of cams. =These Spume are based on the three income categories reported in the CHAS simple: 0-67.999:

$6.000-$14.999; and $15.000 or more.

SOURCE: Adapted from NCHS 10:129. 1979. p. 25; and adapted from Aday et al., 1900. p. 58:

and unpublished data from the CHAS 1976 survey.

21-nms. in the NCHS maple. the hospital clinicsserving as the tite of first contact were probably those

doyen at hand. In the CHAS sample, those that served as regular providers were apparently relatively far

away from where patients live (as table 27 shows. more than a fifth ofthe patients had to travel over a half

boar).

396

4 0 -)
Longer trirvel times for the poor and minorities reflect various factors

the dependence of such groups on less .efficient forms of transportation, and the scarcity .of physicians in poor, inner-city, and rural areas (123- 126).22 When the affluent travel long distances, it is more likely to be

is order to get specialized care (49, 127). For the poor, long travel times are often less a matter of choice than of necessity (12g). Long waiting times in doctors' offices are another major inconvenience, and a source of considerable public discontent. In a recent national survey, 28 percent expressed dissatisfaction with this aspect of their medical care during the past year (82). The highest levels of dissatisfaction with waiting times are generally found among the poor and minorities (3). Prolonged waiting times were the foremost complaint of the patients using

the clinics of a teaching hospital in New Jersey (129). (The authors of this study also noted that patients often equate quality of care with rapidity of services.) That the poor and minorities are dissatisfied with waiting times makes a good deal of sense: as table 28 shows, theyare more than twice as

Nicely as others to wait an hour or longer at their regular source of care

(CHAS sample), and they also wait considerably longer to get care for acute conditions (NCHS sample)-23

TAME 29. °Nice Walling Time by Family ksoome and Ream U.S., 1973-74 and

1979.

Family income and Race

Percent with Otiloe Wallkig Time ot 1 Hoar or Mom

NCH 1973-741 CNA& 19762

Al Persons 21 13

Feint), income

Lees than $5,000 27 21

*5,000-$9,000 21

910,000-314,000 21 12 $15,000 or more 17 9

Race

White 20 12

Nonwhite 26 22

*The NCHS amp* is boned on average annuls, incidence Cl medially attended acute conditions

Isiah known office volt ng times at alas of first medical contact= U.S.. 1973-74. the CHAS sample is based on a sample of the U.S. population; data on office wafting tans we reportecl about the indlviduera nsgularecurce of am. Ma me ae e based on the three Income categorise reported In the CHAS sample: 0-$7,999; 4.990: and $1 5,000 or more.

souRce NCH& 1Ct 129, 1979, p. 25: and adapted from Aday, et se., 1960, pp. 66.67.

22A repast by the National Research Council (22) attrilaited this scarcity first to lack of sufficient

patients bon sifted toy far physician services. but also to physicians" 'Tear of personal violence, the

Afficeties of4kiefingirsidt the complex social and emotional problems of fannlies living in poverty,. and the

gross umiak:quacks o( *be needed support by municipal hospitals and other social services.'

"Although the iffferentiels were smaller for acute cam, this was riot because the disadvantaged waited

Awe in acute situatioo* as but rather became the whim and affluent waited more. The affluent wine probably moS ND*to use ementsacy rooms in acute care situations. thin experiencing longer waits than at their

zegaler provision. Sascross have shown that affluent patients oaths emergency rooms tend to have more urgent needs than those of-power patients (ix).

397

403
Waiting times also vary substantially among different medical settings.

Average waiting times ranged from over an hour in hospital outpatient

clinics and emergency rooms to 41 minutes in doctors' offices and private

clinics to 32 minutes in company or school clinics (table 29, right -hand

column). Similar differences in waiting times among settings have been

reported in local studies as well (52, 129). The length of waiting times depends in large part on the use of scheduled appointments. As table 29 shows, the proportion of patients

seen by appointment varies considerably among settings, and waiting

times are generally longer in settings that have fewer scheduled appointments. In addition, waiting times within most settings were much shorter for visits by appointment than for walk-in visits. Yet, even though a

number of studies have shown that appointment systems can cut patient

waiting time substantia. lly (131, 132), many hospital clinics still use

"block' appointments rather than individually scheduled visits-24

Waiting and travel time can be viewed as a kind of nonmonetary

"price" that, 'lice actual price, may be a barrier to access (108, 135-137).25

Some research indicates that distance plays a primary role in choice of provider but has less influence on volume of care (34, 110, 139, 140).

Other evidence suggests that, particularly for nonurgent services, distance

TABLE MIL Use el Appointments and Avsnsge Office Walling TIMM by Appointment Ilteleas et 12111erent Sources et Carm 19711.

hasiacs!!

IliellIng

Percent

wills Apging late

=lice Walling Theme for (minor ask

Appointments Walk-In Total

Al settings 65 39 61 43

Doctor's office or private

clinic 69 37 58 41

Company or school clinic 33 32 32

23

Other publicly supported clinic 45 70 53

Hospital outpatient clinic or

emergency room 41 SS 83 72

lAdepted from Aday, al., 1980, p. 55 based en the CHAS national sample: office waiting times

were reported about the indlviduarsregulars:arced' cam. zEstimetes based on the number of people who said they sometimes set up appointments in advance

at their regular source of care (see Aday, et at., 1980, p. 277).

240ae taxionale sometimes given for not having scheduled appointments in health care settings with

predominantly poor or ethnic patients is the alleged inability or unwillingness to keep appointments_ A

variety of experiments designed to improve appointment-keeping behavior have cholla:need this notion.

suggesting that institutional efforts can be key in lowering broken appointment rates to acceptable levels

(131. 133, 134).

241n addition to being deterrent to patients, long office waitin ; times may also give physicians an

incentive to schedule fewer followup visito, if patient loads are heavy and doctors feel overburdened (138).

398 404
does inhibit utilization (107, 141, 142). Both Simon and Smith (143) and Acton (135) found that distance was a stronger deterrent to short physician visits than to longer visits, perhaps because the short visits were

less urgent (101). Much of the economic research on the role of time factors assumes that

time is less valuable to the poor because the "opportunity costs" (the value of opportunities foregone during that time, usually measured by the

individual's wage rate) are lower than those of the we11-to-do. This assumption implies that the major constraints on behavior are economic, and ignores nonfinancial constraints such as the difficulty of getting a babysitter, taking time off from work, or arranging transportation. Such nornancial constraints may impinge more sharply on the poor, increasing the (noneconomic) opportunity costs of their time. (Even in economic

terms, the poor may be more dependent on wages lost in taking time off work.) Several studies suggest, as do the findings presented in section VI, that in contrast to the "opportunity cost" theory, travel times have a greater deterrent effect on the poor than on the affluent (144, 145). Another flaw in the economic analysis of time costs is its ;inplication

that the poor "voluntarily" choose to pay time costs rather than financial costs. In reality, they may have little choice about either. As noted previously, health care options are severely limited in many poor communities, and the real choice may be not between time and money but between care and no care. To assume that the poor rationally "choose" to

travel farther and wait longer to get medical care ignores such constraints and verges on "victim-blaming."

Office Hours, Appointments, and Off-Hours Coverage

Various orga nintional policies regarding office hours, coverage arrangt-ments., and appointments may significantly affect the accessibility of care. Individual appointments are relatively uncommon in hospital clinics compared with other settings, as has been discussed_ Lead times for appointments (whether individual or block appointments) also tend to be

longer in hospital clinics than in other scttingsin 1976, they averaged 13

days, compared with 5 days in doctors' offices, and 2 days in other settings

(unpublished data from the 1976 CHAS survey). Not being able to get an appointment "as soon as needed" was the most commonly named problem in getting medical care in a 1974 national survey (91). On the average, the affluent schedule appointments farther in

advance than the poor, but these appointments are also more likely to be

for preventive or elective care, which may require less immediate

attention. In fact, problems making an appointment were reported less often by the affluent than by the poor. Among people who made

appointments, 10 percent of those with incomes below $5,000 reported

having problems compared with 7 percent of those with incomes above $15,000 (3). There were comparable differentials by race. The convenience of office hours is another important determinant of accessibility. For example, it may be difficult for some working adults and

for mothers with small children to see providers who hold office hours only between 9 a.m. and 5 p.m. weekdays. In addition, coverage during

399
nonoffice hours and house calls for emergency needs indicate the

availability of care under unusual circumstances. Again, we find the usual pattern of disparities by race and income (table 30). The poor and minorities are less likely than those who are affluent or white to use providers who hold office hours on week nights or Saturdays or who make house calls. House calls are twice as common among whites as nonwhites_

These disparities are due in part to the more frequent use of hospital- based clinics by the poor and minorities; as table 30 shows, Saturday

office hour. .ind especially house calls were much less common in such

clinics than in doctors' offices. (There are also income-related disparities within settings, as discussed below.) The lack of office hours on week nights or weekends appears to be more

than just an inconvenience for the poor_ For both poor and nonpoor, use

rates were generally higher among people using providers who offered weeknight office hours. However, the differentials were greater among the

poor, suggesting that their utilization was more dependent than that of the

affluent on the availability of weeknight hours. Adequate coverage during nonoffice hours is an important element of

the quality of health care, allowing access for emergency needs (146). Office hours and arrangements for off -hours coverage vary markedly

among different health care settings. Table 31 compares six different ambulatory care settings in Washington, D.C. and reveals patterns of care

that are probably fairly typical. Off-hours access was poorest in the public

clinics, which were open mostly c=uring working hours yet had no special arrangements for off -hours coverage (38 percent had no provisions at all).

TABLE 30. Availability of Provider* by Patients' Family income, Race, and Medical SsWng CHAS National Sample, 1976

Family income, Race and Medical Setting

Percent tieing Providers Who

Office Hours

Week Nights

Office Hours

on Saturdays

House

Calls

All persons 30 65 26

Income

Under 58000 22 69 21

58000-314.999 32 78 25

315.000 or more 34 79 31

Race

White 30 66 28

Nonwhite 29 63 14

Medical Setting Doctors office 30 67 28

Hospital outpatient or emergency

room

31 53 2

Other clinic 34 36 10

SOURCE: Unpublished data from the CHAS 1976 national survey.
TAME 31. Awl Hours Open and Types d Ansingements for ON-Hours Car- swage ki DIMiereat Ambulatory Care Selling= Weelaingion 1871

Total number of

hours open per week (average)

Distribution of

off-hours coverage

arrangements: None

Answering service

Refer to hospital

emergency room

Coverage by doctors in same

or other practice

Number of

organizations

sampled

Must Source/ oil Came

Fee-for-Sereice

PgPlid Group Fraction

Public

Clinic

Hoepftal etiepikel Enter- Oulpellent gamy Department Room

Solo

Practice Group Practice

38 43 63 41 34 168

21 6 0 38 0 0

8 0 0 0 0 0

26 0 0 62 100 100

45 94 100 0 0 0

70 15 3 16 4 1

SOURCE: Dutton,. unpublished data.

Many solo doctors also had limited hours and poor coverage arrange- ments. The hospital emergency room offered maximum access, with 24- hour coverage. The prepaid group practice was also quite accessible, with

some evening and weekend hours and regular coverage during off -hours by doctors in the practice

Beyond Two-Chas Care: Unequal ENUTiers Win Sktlings

Because the poor are much more likely than the nonpoor to rely on

hospital clinics and other public settings for primary care, they must cope with the sometimes considerable financial and organizational barriers of such settings. The problems do not end there, however. Within each

setting, too, the poor often face greater obstacles than the nonpoor.

26It was interesting to note in these data that the frequency of medical "coeds" reported during

sonars= hours (from 6 p.m. to 3 a.m.) was more strongly related to patients economic status than to

providers' homes. About. 20 percent of the predominantly low-income patients using the public and

hospital creaks reported medical needs during these hours compered with, about 33 perm= of the

gensmally more affluent patients men' g the three private systems. The more Itfilment were apparently less

willing to wait until regular office hours when symptoms: appeared; the poor, regardless of which setting

they med. were ifforel&ely to say they had no off-hours 'needs.'

407 401
Whether this is because the poor use different providers or because they

are treated differently by the same providers is difficult to say; most likely,

both are true. The inequities are real, and in some cases substantial.

Data from the CHAS 1976 national survey reveal unequal barriers

within three major types of ambulatory settings (doctors' offices, hospital

clinics, and public, company and school clinics). In all three settings, lowincome patients were most likely to have no insurance, to wait longest in

the provider's office, and to have the longest trip to the provider. Generally, in fact, the higher the income, the lower the barrier. For

example, waiting times in doctors' offices declined steadily with patient incomefrom 51 minutes for low-income patients to 41 minutes for those

with middle incomes to 36 minutes for those with high incomes. The proportion of patients with no insurance coverage varied even more

sharply by income in all three settings. Insurance coverage is especially

important in hospital clinics given their high charges, yet more than a

quarter of low-income patients using these clinics had no protection at all. Similar income-related differences are also evident in data from

Washington, D.C. (table 32). Poor patients waited longer in the provider's

office than nonpoor patients in every settingalmost twice as long in the

fee-for-service group practices. The poor generally had to travel farther to

get to their regular providers, and it took them longer to reach all settings

except public clinics. On the other hand, delays in getting an appointment were generally

shorter for the poor in most settings. The one exception was hospital

emergency rooms, but as mentioned before, this was probably because the affluent are more likely than the poo- to use emergency rooms for truly

urgent problems that require immediate attention. The poor also tended to

use providers who charged lower fees, although again there was one

exception: poor families used higher cost hospital outpatient departments

than those used by the more affluent In fact, the average charges in the hospital clinics used by the poor were second only to charges in the fee- for-service group practices used by the affluent Because many hospital

clinic patients have inadequate insurance coverage, such charges may

have presented a significant financial barrier to access. Convenience factors also favor the affluent within most settings. The

CHAS 1976 survey compared the availability of week night and Saturday

office hours and house calls to patients of different income levels within

different ambulatory settings. Again, although the settings themselves vary

with respect to such factors, there are also some notable disparities within

settings. Even in doctors' offices, where one might expect traditional

patterns of practice to be more uniform, the convenience of services varies

according to patients' economic status: providers used by low-income

patients were least likely to have office hours week nights or Saturdays or

to make house calls. This pattern is unfortunate given the apparently

greater dependence of the poor on the availability of office hours at times

other than during the work week. Discriminatory patterns of care also persist within some settings. For

example, a study by Perkoff and Anderson (130) suggests that nonmedical

factors, such as the patient's race, influenced the decisions of emergency

room physicians concerning hospital admission. Another study of surgical

402
TAME 32L 011issences In Fkisocisd, Drama= Ilona and Structural Seniors Faced by Poor and Nonpoor Patients In Morena Ambulatory Set- Slew Waseisingksn, D.C.., Saneple, 1971

amerage for

Poor and Nonpoor Patients In

Each SWIM*

Usual Sour of Case

Fee-for-Service Prepaid Group Practice

Public

Clinic

Hospitel Ems"-

Outpseent gamey Department Room

Solo

Practice Group Practice

Provider changet

indexl(ciollars) Poor 6.18 6.09 prepaid free 8.58 8.00

Nonpoor 6.46 9.97 prepaid free 6.84 8.00

Average distance

to provider (miles) Poor 3.1 4.2 5.0 1.6 3.5 1.0

Nonpoor 3.3 3.5 4.2 1.9 2.7 0.7

Average travel time to provider

(minutes) Poor 20 26 33 17 27 12

Nonpoor 18 20 24 18 20 9

Average time waibsd in ark* to see

provider (minutes) Poor 27 46 24 51 49 34

Nonpoor 25 26 20 43 42 29

Average days waited

for appointment Poor 3 1 7 17 5 5

Nonpoor 4 7 13 18 6 3

Total mmnber of

patients repre- senting each

setting 842 311 359 768 615 166

Poor 153 16 21 276 286 56

Nonpoor 689 295 338 491 328 115

*index is based on average of charges for pediatric exam. treatment of ear infection, urinalysis. hemoglobin, and throat cure.

sounce Dutton, unpublished data.

care in a large teaching hospital found that race and economic status were

important determinants of the type of care received: blacks and patients on Medicaid were from two to four times as likely as whites to be under

the care of surgical residents still in training rather than staff surgeons

(147) Moreover, this racial pattern has remained unchanged over the past

two decades. Various studies have also documented the fact that the poor and minorities, often those on public assistance, are more likely than other patients to see foreign medical graduates (148 -ISO).

403

409
Suannary

Obtaining health care involves both financial and nonfinancial costs

money, time, inconvenience, and various kinds of emotional stress. All of

these are potential barriers to access, and someprovider fees, office

hours, the distance patients must travelhave a disproportionate impact

on the poor. Moreover, the poor and minorities also face more of these

bathers than other groups. They spend a considerably larger fraction of

their incomes on health care, travel farther to get to their usual providers,

wait longer in providers' offices, have more trouble making appointments,

and have less access to week night office hours and house calls. These

barriers reflect the inadequacies of public and private health insurance

coverage as well as the greater reliance of the poor on hospital-based

clinics. Yet even within the same settings, there are disparities between the

barriers faced by poor and nonpoor patients and some evidence of

different standards of care.

THE IMPACT OF BARRIERS AND OTHER

SYSTEM FEATURES ON PATIENTS' ACCESS:

NEW FINDINGS FROM A STUDY

IN WASHINGTON, D.C.

Patterns of use reflect the impact of barriers to access along with a host

of other factorspatients' demographic and socioeconomic characteristics, the underlying distribution of illness, organizational aspects of the

medical setting, and physician features such as background, training and

current medical attitudes. Many studies indicate that one or more ofthese

factors may affect patterns of patient utilization, but few investigations

encompass all of them. As a result, it is often difficult to assess the impact

of specific barriers apart from other provider and system features and

patient attributes that also influence utilization. Further, a number of

studies have dealt only with one or two different ambulatory care settings,

and it is not clear how applicable the findings are to other settings.

Although there is now widespread recognition that the organization and

financing of health care have a major impact on patterns of utilization,

many uncertainties remain concerning the role of particular factors.

This section presents new findings from a study of ambulatory care in Washington, D.C. that seeks to clarify the impact of various kinds of

access barriers on patient utilization. This study extends the findings of

earlier research that demonstrated significant differences in the net impact

of different ambulatory care settings on patterns of use (reported in table

19). It identifies the specific barriers and other system features that comprise this net impact and provides estimates of their relative

importance. Although the study is based on a single city with an atypical

racial composition, and on calculations that are in part exploratory, the

findings nevertheless help to identify a number of important issues that

deserve investigation in other settings.
The results address four major questions: (1) How do different types of ambulatory care settings compare with respect to the patients served, financial and organizational barriers to access, and types of physicians employed? (2) What are the most important financial and organizational barriers to usc? (3) Do such barriers affect children's and adults' use differentially? (4) What is the combined impact of the access barriers

faced by the poor in hospital outpatient departments compared with those

faced by the nonpoor in private settings? Multiple measures of use are analyzed, including both children's and

adults' use and distinguishing between patient-controlled measures such

as preventive care and initial illness visits, and physician-controlled measures such as followup visits and medication. Although long recog- nized as important (1 5 1), the distinction between patient and physician

control is often ignored in empirical research. It is essential in analyzing

the factors that impinge on different measures of use because, as mentioned before, patient-controll4d use is most vulnerable to financial and organizational barriers; physician-controlled measures are more

closely related to the clinical severity or illness as well as the incentives and constraints that influence physicians' practice patterns. The findings are based on a multiple regression model of use that includes both patient characteristics and also provider and system features. The relatively large

sample size and diverse group of providers and ambulatory care settings permit calculations of the independent effects of different access barriers while controlling statistically for the effects of both patient and provider characteristics.

Data and Methods

The data reported here are from a household interview survey and a

survey of providers in Washington, D.C. in 1970-71, carried out under the auspices of the Institute of Medicine ( 152). The household survey was conducted in two geographic areas of Washington, D.C. to obtain a broad

range of income levels and sources of health care. It included a random

sample of households with children between the ages of 5 months and 11 years, stratified by type of usual source of care. The completion rate was 85-90 percent. The present study deals with a subset (roughly half") of the original sample, consisting of all prrsons who had a regular source of health care and whose data were complete from both the household

interview and their regular provider. It included 681 families, contain' ing 1,623 adults (12 years old or more) and 1,435 children, and closely

resembled the original sample on key characteristics.

27This reduction was due primarily to missing data from regular providers who had not been included in

the provider survey. Fewer than 10 percent of persons in the original sample were eliminated because they

did not name a regular sour of care.

4' 405
The provider survey included all regular sources of children's medical care mentioned in the household interviews.28 The providers identified were medical institutions," particular professionals within institutions,

and solo practitioners. The survey obtained information on the organization of the practice as a whole and also on individual physicians in the practice. The response rate was 80-85 percent. The subsample of providers analyzed in the present study included 70 solo practitioners, 16

fee-for-service groups, three prepaid group clinics (all belonging to a single prepaid plan), four hospital pediatric outpatient departments (OFD's), one

emergency room (ER), and 16 public clinics (city and volunteer well-child

and family clinics). Because the study was conducted in Washington, D.C., about 90

percent of the study families were black. Although the regression analyses distinguished the effects of race from other factors that might affect patterns of use, the results may still reflect some patterns that are more

characteristic of black than of white populations. With respect to income distribution and use rates, the sample was quite similar to national urban

averages (2, 95). The sample of providers representing the six health care

settings also appeared to be quite similar to national averages for many

characteristics, such as number of years of practice and specialty status

(153), although it contained a much higher proportion of black physicians

than the national average of 2 percent (154). Measures of use are based on information reported in the household

survey. Two types of patient-controlled use are analyzed: preventive care, indicated by health checkups for respondents and children; and initiation

of care, indicated by one or more visits to the usual provider in the last 6 months for children and for all family members, (nonschool) vision and hearing tests for children," and consulting a doctor for children's ear problems. Measures of physician-controlled use include the number of

followup visits for all persons with one or more visits in the last 6 months, and prescribed medication. Followup visits are based on the "episode of medical care" concept (155). Appendix A lists the coding and mean values of these measures, and also shows the proportion of total variation

explained by each estimation equation 31

211A single usual provider was identified for each family member. based on information concerning

regular sources of care and utilization reported in the household interview. When more than one regular

source was listed. the provider seen most often during the last 6 months was defined as the usual provider.

Although people may have seen other providers as well. use of the identified usual providers generally

constituted a large proportion of total use. For example. among persons with visits during the 6 months prior to the survey, more than 95 percent had seen their usual provider at least once and 80 percent has

seen only their usual provider.

29when an institution was identified as the regular source rather than a particular physician. only the physicians in the institution who regularly cared for children were included in the sample. and their

responses were averaged.

3°The correlation of vision and hearing tests with eye and ear problems, respectively was positive.

suggesting thr.t the purpose of these tests was primarily diagnostic or therapeutic rather than preventive.

31Although these R2 levels are similar to or higher than those in most analyses based on individual observations. they indicate that. despite the wide range of variables included in the regression model.

much of the variation in use rates remains unexplained. The credibility of the significant relationships

estimated is not necessarily dizr-inisbed by a low proportion of explained variation, however; valid

estimates arc most dependent on the inclusion of relevant (and potentially confounding) variables.

4 1 4-) 406 .....
For each of the 10 use measures, a multiple regression equation was estimated which contained both patient characteristics as well as provider and system featurcos.32 Considerable previous research suggests that patient characteristics affect patterns of use (157, 158). Appendix B lists

the patient factors included in the present study. Provider and system features included various access barriers and also measures-of physicians' characteristics.33 Among the access barriers were: (1) financial barriers, represented by fees charged for selected services; (2)

time bazriers, represented by the distance patients traveled to their regular provider, and the time patients spent waiting in the provider's office; (3) organizational barriers, reflecting various organizational policies which

affect the convenience of carethe use of prescheduled appointments, the

lead time required to get an appointment, office hours, the adequacy of off-hours coverage, and physicians' arrangements for sharing patient care; and (4) practice patterns, represented by the proportion of patients who were "regular" users of that source and the general economic level of patients. The effects of both charges and distance were estimated

separately for the poor and non-poor to test for their possible differential impact on the poor. The physician characteristics included demographic

factors, training_and experience,and current medical attitudes (preventive orientation and goneral satisfaction with practice). Appendix C lists the

coding and =eau values of all of these measures. The regression results indicate the "direct" links between access barriers and utilization --- relationships that are statistically independent of one another and also of provider and patient cs.34 These results

are also used to illustrate the impact of access barriers typically faced by

the poor and the nonpoor in hospital outpatient departments and solo

practice, respectively. To provide a basis for comparing the effects of

barriers in the two settings, a partial estimate of the probability of visits

for a hypothetical 6 year old female child was first calculated, using

average values for all _patient and physician characteristics (but not including the barriers)." Estimates of the incremental effects of each

"Each equation contained the variables listed in appendices B and C. The parameter estimates

obtained for both patients' and physicians' chazacteristias are reported eleewhere (156); for present

purposes, them measures serve a nceettror variables which account for additional sources of variation in

use and thus balpIs isolate the variablesas. the quadratic and interacting effects offer and sex.and the

efiffetuntenlefideetreherips and distance on the poor. Ordinary Last Squares was treed as the estimation

mashed_ Tbealielleof the :erasion analysis are reported here in standardized form (beta coefficients) to

famTstase comparing= ordapendent and independent variables incase red in afferent units.

33Given the linginentary =owe of fiesdings from previous research on these features. the selection of variable" was ateemaraly =placatory. and the 'India se require additional theoretical or empirical

vaficlatios. Sae Dalai (156) fa-farther detail on procedures for developing the modal

pct effects. merfaated through ethiiiVariables. may also exist that are quite different from the direct relationships reported. Although a snore complete causal anslysis ef the entire system of

aletionthips would include both direct and indirect effects, estiMates of the direct effects of system

features provide a metal Martin' s point for a name comprehensive analysis.

35111114 estimate was obtained by multiplying the (nonstancierdized) regression coefficients of aII patient

ebarneatisties Bead in appending B and the physiebm characteristics listed in appendix C times the average

or modal sample value for aids of these variables. Physician characteristics mum included-in cakulating

the origisl penal embalm because they seemed leas likely to affect patisints' access than the various

snactural barriers.
barrier were then calculated by multiplying the average values for the barriers in each setting times their respective regression coefficients.36 Final probability estimates for each setting were obtained by adding the

initial partial estimates and all of the incremental effects of the barriers. These two estimates compare a given typical child's likelihood of visits to

two different regular sources of caresettings that were identical in all respects except that one had the financial, time and organizational barriers typical of a hospital outpatient department and the other had the

corresponding barriers typical of solo practice.

Findings

(1) How Do the Six Different Ambulatory Care Settings Compare?

Patient Groups

The patient groups using different regular sources of care for their children differed considerably, especially along economic lines (see table 33). The average income of families using the three "private" settings (fee- for-service solo practice, group practice, and the prepaid group) was almost twice as high as that of families using public clinics and hospital outpatient departments (OPD's), with incomes of families using emergen- cy rooms (ER's) falling between these. More than half of the OPD families

reported public assistance coverage compared with only a quarter of the ER families, and even fewer of the families using the three "private"

systems. Reported illness was quite comparable: adults in the fee-for- service groups and children in the prepaid group had the highest reported

illness levels, but none of the differences among settings was statistically

significant (p<0.05). There was also little variation across settings in

respondents' attitudes toward health care, average family size, or length of

residence in the District of Columbia.

Patterns of use varied markedly among settings, with the highest rates occurring in the three "private" settings. The differences were greatest for preventive care: 88 percent of the prepaid group children had regular health checkups compared to only 16 percent of the children using an ER

as a regular source.

Physician Characteristics

The characteristics of physicians in the six settings also differed (table 34). Women physicians were most common by far in the public clinicsa national pattern (159)and also in the fee-for-service and prepaid group practices where they were more likely to have salaried positions. The proportion of black physicians was fairly high in all settings compared to

36The average values of barriers in these two settings. respectively. were: provider charge index 5838. $6.46; distance 3.5. 3.3 miles; office waiting time 49. 25 minutes; percent of patients seen by

appointment 34. 54 percent; days waited for appointment 5.4; total hours per week 34.38; adequacy

of ofT-hours coverage . 2.0. 2.2; coordination of physicians' practices 2.2. 1.2; proportion of regular

source patients 100. 75 percent; low-income clientele only 100. 0 percent

408

4 1 4
TANIS UL Salsaled Cberasterislios of Pa Seeds with DI Nereid Usual Sources of

MINIM Cadet Wallington, D.C., 1871

Individual and

Fondly Cliorsolorielka

MUM SOUVOS of CRIS

Pree-Oor-lisevios

Solo Group Pracidoe Practice

Prepaid Group Practice

Howland

Hospital EnverPublic Outpatient wow

Clinic Deportment Room

Socioeconomic

Stakes and Race

Average family

income (dollars) Percent below

poverty Percent

respondents with education

beyond high

school

Percent Black

Mariam* Coverage Percent with

private the

insurance

Percent with

public assistance limes

Average child's chronic illness

index

Percent of

adults with a

medical problem

Health Care ike

Percent of

cfpl/dren "regularly- taken for health checkups Percent of

children with

visits to usual

source in 6

months

Percent of

adutte with

visits to

usual source

in 6 months

Number of families

representing

each setting Number of adults

Number of

children

11,000 11,480 12,170 6,680 6,288 8,416

14 6 4 32 47 31

46 46 37 13 15 7

90 81 93 99 100 98

80 91 100 57 49 76

13 10 4 38 53 26

0.12 0.10 0.13 0.10 0.11 0.13

10 17 13 11 13 13

56 69 88 50 30 16

60 61 75 55 41 49

34 38 49 17 23 24

187 68. 81 183 128 35

444 176 202 382 296 103

396 135 147 386 309 60

409
TAME SW Ploys Mow Chommteriellioe in the Slit Dellerent Ambulatory Care seelingo

Ployeloiert Cberaalmlellos

Usuel Sourer! of Core

Pee4or-illeorloe

"00dd Group Practice

Public

COMM

HomplIsl Hospetel Oulpeliest Leroy Department Room Soto

Practice Chomp Praolloe

Demographic Percent to 2 29 18 58 17

Percent Wadi 71 40 8 21 6 13

Training and Ex- perience Average no. of years of pracdoe 26 21 26 18 13 24

Percent still

in training 1 0 0 0 54 0

Average no. of yews of

residency 2.7 2.4 3.3 2.6 1.9 12

Attitudes

Prevendve

medicaid

orientation' 28 46 67 31 45 50

Sabitaction

with practice? 2.21 2.46 2.80 2.03 2.00 2.99

Mewed on the average percent of physicians reporting routine screening for vision, hearing and blood disorders airing pedic smarm

'Coded: 1 not erWelle So 3nvery satisfied.

the national average, ranging from 6 percent in the OPD's to 71 percent of

the physicians in solo practice. The average number of years of practice

ranged from 13 years for physicians in the OPD's, where almost all of the

physicians in training were located, to 26 years for solo practitioners. Of

the six settings, the prepaid group had the most highly specialized

physicians, as indicated by years of residency, number ofspecialists, and physicians' preventive medical orientation. OPD and ER physicians had

the shortest average residencies, although many of the OPD physicians had not yet completed training. Physicians' general satisfaction was

highest in the ER and the prepaid group, and lowest in the hospital OPD

and public clinics.

Potential Access Bathers

Various potential barriers to access are shown in table 35. Financial

barriers, represented by the average fees charged for selected services,

were highest in the fee-for-service group practices, followed by the

410 41
TAME W. Venous Petendal Ames* illerdere In Ore lila DINment Aratieleaory Carry schwas

Usual Source of Care

Irew4swillienfiee HoeplIal Prepekl Neepttel ElmeriNumnaolel soft Group Group Pad a* Chdlodeane IMAM/ Renters Prasidoe Propene PflICAllOa adds Department gloom

Provider charge

indexIdoilers)

Throe Barriers

Average distance

to provider. (miles)

Average waiting

time In

providers adios (minutes)

Organizational Barriers

Percent of

physicians

that see any of pedants by appointment

Average number 01 days waited for

appointment or to be seen

Practice PS12E10716

Average degree of coordination

with other

physicians' practices*

Percent with most

or ail regular source patients

Percent with

exclusively

low-incwee

patients

Number of organrepresented

Number of

physicians

represented

8.22 9.48 preps*, free 8.02 8.00

3.2 3.8 4.4 1.8 3.5 0.9

24 28 20 49 47 33

54 75 100 26 34 0

4 6 12 18 5 3

1.2 2.1 2.0 2.4 2.2 2.0

75 78 100 60 100 100

39 20 0 71 71 100

75 16 3 16 4

75 25 14 25 31 3

index is teamed on average of chwges for pediatric exam, treatment of ear infection. windy**. hemoglobin, and throat culture. *Coordination was code& 1 low (solo practiceX err am% (share personnel and/or facilities); 3= high (share patientswith other PADe).

411
hospital OPD's and ER's." For the predominantly poor patients using

these two hospital-bawd settings, high charges may have been a problem. As noted previously, between half and three-quarters of these patients were not covered by Medicaid; 16 percent of the ER families had no

insurance coverage at all. At the other extreme in terms of financial access were settings where services were available free of charge, as in the public clinics and (after enrollment) in the prepaid group. There was considerable variation both within and across settings with

regard to time and organizational barriers. Hospital emergency rooms and public clinics were the most accessible in terms of distance, for example, but, along with the hospital OPD's, had much longer office waiting times

than the three private settings. Conversely, the prepaid group practice had

the shortest office waiting time (20 minutes) and the longest average distance traveled (4.4 miles). Delays in getting an appointment ranged from a low of 3 days in the ER (for those patients who made

appointments) to 18 days in the public clinics, probably reflecting the urgency of conditions seen as well as the availability of appointments. Office waiting times appear to vary directly with the extent of scheduled

appointments; patients waited substantially longer in hospital ER's, OPD's, and public clinics where appointments were least common. The advantages of access on short notice in these settings is thus balanced

against the disadvantages of longer office waiting times. Organizational accessibility also depends on the convenience of office hours for patients, the adequacy of coverage arrangements during non- office hours, and perhaps also the general atmosphere. As discussed

previously, the public clinics and some of the solo doctors had limited

hours and inadequate arrangements for off-hours coverage. The OPD's as well had relatively short hours and poor off-hours coverage, despite a high degree of coordination with other physicians' practices. The general atmosphere in many of the hospital clinics, which are typically busy and

impersonal, may also have been a psychological barrier to access for some patients.

Summary: Comparisons of the Six Settings

There were sharp divisions along economic lines among the patients using different ambulatory settings as a usual source of care: the majority of affluent families used one of the three "private" settingsfee-for- service solo or group practice, or the prepaid group; poor families were

"Financial access depends on both the relative price of service: and the extent of patients' insurance

coverage and other economic resources. However, only in the prepaid group is insurance coverage an

aspect of the system structure itself: in the other settings, it is a matter of patient discretion and economic

level. Because the intent here is to assess the impact or system features rather than patient decisions. the

discussion focuses on physician fem. Such fees are lately to be a deterrent for people who do not have full

coverage for ambulatory care, which probably includes the majority of patients with private health

insurance (because most policies have a sizable deductible and also copayznents). Further, any diluting

effect that insurance coverage may have on the impact of prices is accounted for to some extent by

including measures of private insurance and public assistance in the r.vressicrn analyses.

412
mare likely to use a public clinic, hospital outpatient department, or

eniergency room. The typ-% t- 7.---,.ysicians also varied considerably among

settings: more than half c *. '2: p..btic clinic doctors and a third of the feefor-service group doctor and most of the solo practitioners were black. More than IL. bia OPD doctors were still residents in

training. Physicians in the prepaid group were the most specialized and, along with the solo practitioners, had been in practice the longest. The hospital OPD's and ER's generally had the greatest barriers to

access. as many studies have found; most notable were costs, office waiting times and, in the OPD's, limited hours and poor off-hours

coverage. The public clinics had no financial barriers, but did have a number of organizational barriers such as limited hours, long office waiting times, and fragmentation of care. Considering both financial and organizational barriers, the prepaid group was probably the most accessible setting, although the two fee-for-service settings were somewhat more accessible in organizational terms.

(2) What Are the Major Financial and Organtestioaal Barriers to Use'

The regression results (tables 36-40) provide estimates of the relative

impact of various barriers on patient utilization. Positive estimates

indicate factors that are associated with increased utilization, and negative estimates indicate factors that may inhibit utilization.. The statistical significance of the estimates is indicated in the tables.

Financial and Time Barriers

For both upper and lower income groups, higher charges were

apparently a deterrent to all types of use (table 36). Although not all of the

estimates are significant, they are uniformly negative striking evidence of

the effect of prices on ambulatory care utilization. The relative strength of this effect varies according to the type of use between the poor and the nonpoor: for preventive care and initiation of care the impact was generally greater among the poor (estimates for the poor were more

strongly negative than for the nonpoor); for followup care and medication

the impact was greater among upper income patients. This pattern

suggests that the poor tended to respond to higher prices by cutting back on preventive services and on initiation of illness care; affluent patients were more 'Nicely to cut back on followup care or medication. Affluent

patients may have had greater discretion over the amount of followup care

than the poor due to less severe illnesses, or they may be less subject to

control by providers than the poor as might be suggested by the high rates of "unnecessary" surgery reported in some Medicaid populations (160). Table 37 shows the estimated effects of two barriers that involve time

costsdistance to the provider and office waiting times. As expected, the

effects of distance also vary by income. For the poor, distance appears to have been a significant deterrent to preventive care and a weak deterrent

413
TAINS 311. Illearestird Direst NNW* el Provider Cloarges on elleassres of Arabsiisey Use ler Peer and Nesepeor

Illimordiaed em

Cosillloismis

Provider Chime hid=

PATIENT-CONTROLLED USE Nonpoor Poor

Prayanakos Gent Nember of rsaponclenrs health examinations -0.026 -0.014

Requessoy ort oblielnares preventive health examinations

bilitillan of Care

-0.035° -o.06040

Probability of any visits to usual provider during lest 6 months by parson

-0.010 -0.036*

Probability of any visits to usual provider during lint 6 months by child

-0.006 -0.036

Proberbillly that .0111d..apar had a (non-echool) hearing or ear examinetieliC-

-0.0466 -0.065"

Poubseeilly that (*NO over had a (non-echool) vision or

walk Astagninligon

-0.021 -0.109***

Probability that arid saw a doctor for a past wry

problem

-0.013 -0.049

PHYSICIAN-CONTROLLED USE

Polar/up Cans Number of followup visits per medical condition to usual provider by parson in last 6 months

-0.061 -0.006

Number of followup visits per medical condition to usual provider by chid in lest 6 months

-0.043 -0.017

1101edication Probability that medication was prescribed for anyone

in araiiy during lest 6 months

-0.063' -0.007

p<0.06 .1)<020

NOTE: aignillosnoesNINScs pertain to the difference between the estirriatad effect of diatoms on the poor compered voltiv the nonpoor; however. the beta ocaeiliciente indicate the net eetienteed effects or dletanoe on the poor and the nonpoor. (The lootimete tor the poor wee obtained by adding the diffenentiel effects eatimeted for the poor to the actual enact eellinsesd for the nonpoor.)

to initiation of illness care. For the nonpoor, on the other hand, distance had no significant relation to any type of use. Indeed, for all measures but one (ear examinations), the estimates for the poor are more negative (or

less positive) than those for the nonpoor, and five of these differences are

at least weakly significant. Office waiting times also appear to have had a generally inhibiting

impact on patient use: 7 of the 10 estimates are negative. As with distance, the strongest impact was on preventive care, the most discretionary type of use Findings are mixed for initiation of care and followup, perhaps because patients had less discretion in avoiding long waits when

symptoms were urgent or when followup visits were recommended by

their' physicians.

414

4 21)
mum 87'. iiwsilsd Iftmel Illamoks el Ofthromm, and of ass wo.wry Mu, 410

Amindlafty Use

Olelmos

Slimilleramad Dam

t. Pleader

Nostpaer Poor

lbws in *Mee

PATIENT-CONTROLLED USE

Priming Ver Care Number of nisapondkonra health

somminstions

0.047 -0.024* -0.125."

Rveciusnoy a chadrerea preventive health amminations-0.009 -0.0770* -0.038

Initiation of Cara

Probability of an visits to usual provider dutfte lest 6 months by person-0.003 -0.0390 -0.0380°

Probability of any visits to usual provider during Ma 6 months by chid

-0.035 -0.008 -0.004

Probability the chid ever had a (non- school) hearing or ear examination0.029 0.048 0.067

Probability that chid ever had a (non- so idol) vision or eye examination0.029 0.028 -0.011

Probability that child saw a doctor tor a

past ear problem

-0.055 -0.080 0.0890

PHYSICSAN-CONTROLLED USE

Folowup Carr Number of followup visits per medical oonallon to usual provider by person in hot $ month*

0.027 0.013 -0.003

Humber et follovoup visits per medic& 0.088 0.082 -0.009

+zonation to usual provider by child in

last 6 months

Modicalion

Probability that medication voss presodbed tor anyone In family during

0.078 -0.0211` 0.018

Yet 6 months

oop<0.01 p<0.05 p<020

NOM agniloanosr attatellos purloin to lha difforanote between Me aollnulad affect of distance on Om poor ooniparad IMO tbw nonpoor; however. ata beta coafflolants Indicate the not estimated anode of disarnor on 5* poor and tha nonpoor. astansta for Oho poor was °Mllusc' by adding

the norels 1 elPectsestbasesd farther poor to tbar actual affect estirnalad florae nonpoor.)

Osganizational Barriers and Practice Patterns

The me of scheduled appointments, potentially an access barrier, appears in fact to have been associated with greater utilization: 8 of the 10 estimates are positive (see table 38). (Note that these findings are

independent of the shorter office waiting times that are likely to result

42j 415

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PATIENT-coorrytolium USE

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asomildnstions

-0.006 -0.016 -0.070°

Frequarlay of chIldreses preventive health

immeminstIons

ker/allon eV Cara Probability of any visits to usual provider during last 6 moneys by person

0.074

-0.029

0.071*

0.017

-0.106***

-0.000°.

Probability d any visits to usual provider dosing ant 6 months by child

-0.035 0.015 -0.101000

Probability that chid ever had a (nonschool) hearing or ear examination

-0.069* MOM -0.0004'e

Probability that child stow had a (nonschool) vision or aye examinstion

-0.071* -0.064* -0.033

Probability that chid saw a doctor for a - -0.079 -0.058

peat ear problem 0.15000

PI4YSICIAIS.CONTROLLED USE

Fatima. Cans, leamber ot fug visits per rfindlcual condition to um& provider by person in

-0.032 -0.004 -0.066

Wit 6 months

Number or fallowup visits per modioni

condition to wool providor by chlid In

tart 6 months

-0.006 -0.046 -0.060

Medication

Probability that medication was 0.000 0.012 114

Prelicilbed for anyone In lamay during

Yet 6 months

."P<Ctirt "P<CLOS P<0.2o

relation to individual patients' patterns of utilization. The general

economic status of patients, however, had a very important effect: people

seeing physicians with exclusively low-income patient clienteles had lower

rates of use (often significantly lower) on every use measure but one

(medication). Because the patients' own income levels were taken into

account in these estimates, along with many other patient and system

factors, the differentials presumably reflect the effects of being in a "poor

people's" practice. Possible causes include poor communication with lowincome patients (161), different "clinical policies" that evolve in low418
income practices, negative attitudes on the part of professionals (66. 162-464), or additional structural barriers to access.

Surnirtmry: Major Barriers to Access

Among varicw: financial, organizational, and time factors that affect access, the most important factor seems to be the economic composition of the patient clientele. Patients of physicians with "poor people's" practices had lower rates of almost all types of use, regardless of their

individual economic status or other personal characteristics and indepen- dent of other system barriers and physician characteristics. These lower rates may result from different "clinical policies" that evolve in lowincome practices or from the effects of other barriers in such practices not represented in the data. In addition to practice patterns, financial and time factors such as charges, office waiting time, and distance traveled, also played a

significant role in limiting access. Their impact was generally greater on patient-controlled usepreventive care and initiation of carethan on

physician-controlled use. The role of organizational bathers was less clear. Appointment lead times had no consistent relation to patients' use, although longer hours and better off-hours coverage were generally

positively related to most patient-controlled use measures. Scheduled

appointments, instead of limiting access, may actually have made access easier (even controlling for the associated reductions in office waiting

times). Coordination of physicians' practicesoften involving sharing patientsappears to have had a strong negative effect, particularly on

patients' initiation of care. Certain barriers had a disproportionate impact on the poor. Both

distance and provider fees had a greater deterrent effect on the poor than

the nonpoor with respect to patient-controlled use. For physician-controlled use, in contrast, the impact of fees was greater among the nonpoor, suggesting that they were able to retain more control than the poor over amount of followup care. Such control may have been possible due to less severe illnesses among the nonpoor or to less domination by providers.

(3) Do Access Barriers Affect Children's and Adults' Use Differentially?

Comparing the results for children and adults shown in tables 36-40, it appears that children's access is somewhat more sensitive to a number of barriers. For example, both distance and a low-income patient clientele had a stronger deterrent effect on children's preventive care and initiation of illness care than on corresponding cam for adults. High provider fxs also reduced the frequency of children's preventive care more than that of adults' although high charges discouraged adults' initiation of illness care more than children's (table 36). Similarly, a high proportion of "regular" patients in the practice seemed to promote preventive care for children but not adults. On the other band, office waiting time apparently

affected adults more strongly than children, significantly inhibiting both

preventive and symptomatic care for adults but not children.

419
(4) What Is the Combined Impact of the Access Barriers Faced by

the Poor In Hospital Outpatient Departments?

To give an idea of the combined impact of the multiple barriers in a

typical hospital outpatient department, table 41 compares a given typical child's likelihood of visits to two different regular sources of care: one with the financial, time and organizational barriers typical of a hospital outpatient department (OPD) and the other with the corresponding

barriers typical of solo practice. The final probability of visits to the

setting with the barriers of an OPD was 0.37, compared with 0.62 to the

setting with barriers characteristic of solo practitioners. (Differences were even greater comparing OPD's and prepaid group practice; the final estimated probability of visits was 0.67 assuming barriers typical of the prepaid group.) In other words, if all other factors were equal, the

estimated probability of visits would be 40 percent lower in the OPD's

than in solo practice due simply to differences in access barriers between

the two settings. There were comparable differences for children's preventive examinations. Table 41 also shows how each barrier contributed to the final

probability estimates in the two settings, indicating their relative impact on access. Of the OPD bathers, the two which reduced the probability of visits by the greatest amount were distance and the low economic status of

the practice clientele (each reduced the initial partial estimate by 17

percent). Provider charges and coordination of physicians' practices

(involving sharing patients) were also important deterrents, reducing the

initial estimate by 7 percent and 10 percent, respectively. (Again, there were very similar results for children's preventive examinations.) Although various other aspects of OPD's are clearly less conducive to patients' access than those of solo practice, the above four barriers were apparently

largely responsible for the lower likelihood of visits due to barriers in the

OPD's.

Conclusions

Although this study is based on ambulatory care settings in a single city, the findings are consistent with a wide range of evidence discussed in

earlier parts of the paper. They suggest the following tentative conclusions:

(1) The poor, relying predominantly on hospital outpatient depart- ments, emergency rooms, and public clinics for primary care, bear the brunt of current deficiencies in medical care financing

and organization. Study results suggest that the multiple access barriers typical of outpatient departments reduced the likelihood

of visits by 40 percent compared with the barriers typical of solo practice (and by even more compared with prepaid group

practice). Thus, ironically, it is those with the greatest medical need who are likely to face the greatest barriers to access. (2) The present "two-class" medical care system in which some

sources of care are used almost exclusively by low-income

420
TAIILZ 41. Ealimelled linoreinentst Ellects at Access Derriere in Solo Practice and hoop list Outpatient Departments en Typical Child's Likeli- hood of Ileaking Care

Parnell Estimate of

PeelbetsWity of Welds

Solo

Practice

0.541

Hospital Outpatient Departments

0.58

Estimated Increment&

Eflectefor Illaivisra Ira

Solo Hospital Outpatient Practice Departments

Change Change

in Penmen( in

Probobillty Changes Mobability

Perceive

Change'

Financial and Time Haulers

Provider charges -0.01 -1 -0.04 -7

Distance to provider -0.03 -5 -0.10 -17

Office waiting time -0.00 -0 -0.00 -1

Orgarrtrafionai Barriers

Percent of patients seen

by appointment 0.02 3 0.01 2

Days waited to get appoinbrient 0.01 1 0.01 1

Total hours open/week 0.06 11 0.06 10

Adequacy of off-hours

coverage 0.01 1 0.01 1

Coordination of physiciares° practices -0.03 -6 -0.06 -10

Practice Patterns

Percent "regular source" patients 0.01 2 0.01 2

Low-income practice 0 0 -0.10 -17

Final estimated probabilfty of visits 0.62 0.37 ..1

1Partlell estivate is bowed on the sum of the (norestandardized) regression ooefflcierdis for all patient chsraciarielice listed in appendix B and the physician characteristics listed in appendix C times the mew estop* value for each variable. SEstinsted incremental effects represent the product of the estimated inspect of each barrier variable (Its regression coefficient) *nes the average or modal value of that variable for hospital outpatient departments and for solo practice (actual valuer listed in Methods). sThe percent change indicates what percent each estimated incremental effect is of the initial partial estimate (MM.

4 2 7 421
patients leads to further inequality. There is evidence that

patients in such low-income practices have significantly lower

rates of almost all types of services, regardless of their own

economic status. In fact, being in a practice serving exclusively

low-income patients appeared to be the single most important

cause of lower utilization among all of the financial, organizational, and provider factors considered- This may reflect the

effects of additional access barriers or different behavior by

providers or patientsbut it is unlikely to reflect reduced

medical need. In short, separate does not appear to be equal.

(3) Fee-for-services reimbursement, despite both public programs

and private insurance, creates a financial barrier whose impact

varies inversely with income level (and probably directly,

therefore, with medical need). Even taking many other factors

into account, higher fees are associated with lower rates for all

types of care regardless of family income leveL However, higher

fees were a stronger deterrent to the poor than to the nonpoor for

all use measures involving patient discretion, notably children's

preventive care. Although the financial barrier created by feefor-service is certainly not the only obstacle to equalizing access,

its unequal impact on the poor contributes to unequal patterns of

care.

(4) Various structural features such as distance to the source of care,

office waiting time, and sharing patients among physicians also

act as barriers to access. The impact of distance is greater for the

poor, probably because of their more limited mobility. Scheduled appointments, often not offered in hospital and clinic

settings, tend to reduce office waiting times and to promote

access. Sharing patients is more common in public settings and

seems to discourage patient-initiated care. In light of such

structural barriers, particularly in hospital settings, a strictly

. financial approach to improving access for the poor such as

Medicaid is clearly inadequate. (5) More generally, the findings call attention to the critical role of

financial, organizational, and professional arrangements in

determining patterns of utilization, a role that has often been

neglected in past research. A better understanding of the

implications of alternative arrangements is important for the

crucial policy decisions that lie ahead.

SUMMARY AND IMPLICATIONS

Data reviewed in this paper indicate that there is still a significant gap

between the health status of poor and minority children compared with

the rest of the population_ Although it is clear that there has been some

improvement in access to medical care services for disadvantaged groups,

it is equally clear that many disparities remain. Poor and minority

children are less likely to see a doctor than other children (especially

relative to medical need), and they are more seriously ill when they do get

422
care. They are less likely to have a regular physician, and even less so a

specialist physician. One of the principal reasons for persistent inequalities appears to be a

dual system of medical care in which the poor and minorities use various

"public" settingsoften hospital clinicsfor primary medical care and

the more affluent use private providers_ During the last decade, in fact,

increasing numbers of poor and minority children have come to rely on

hospital clinics and emergency rooms for regular care. Such clinics are

often ill-equipped to provide coordinated primary care services, and many

present substantial financial and organizational barriers to access.

In part because of this dual system, the poor and minorities face greater financial and organizational obstacles in seeking care. They have the

highest out-of-pocket average medical expenses, despite public programs

such as Medicaid. The process of obtaining care is more time - consuming

and inconvenient: it takes the poor and minorities longer to get to their

regular providers, they wait longer in offices, and they are less likely to have access to weeknight or weekend office hours, house calls, or

telephone contacts. Furthermore, even within the same practice settings, the disadvantaged often face greater barriers than the more affluent and

receive a different standard of care_ Although these observations are certainly not new, they take on special significance in the current political setting. The dominant concerns now

are cost control, cost-effectiveness, and reduction of overutilization_ As

noted by the Carnegie Council on Children (165), issues of equity and

access have an old-fashioned ring, harkening back to the 1960's_ In the

1980's, we have supposedly moved beyond such issues to other concerns.

At least one major foundation (the Robert Wood Johnson Foundation) has removed access as its principal program priority as of 1980.

Conferences focus on such topics as "wellness," lifestyle, and behavioral

risks. Leading investigators on access issues now claim that "services are

generally equitably distributed" (4 6) . There are even those who have

begun to challenge the significance of income-related differences in health

status. For example, Michael Grossman and colleagues ( 16 6) contend,

based on an econometric analysis of children's health, that "overall,

income is not an important factor for explaining health variations among

the children in this [national] sample." They conclude therefore that "the

present tendency to base Government child health programs on simplistic notions that income is the primary source of differences in children's

health will not lead towards fruitful or successful public policy regarding

children's health?'

This conclusion, like the claim that access problems have been solved,

can be disputed." Both seem to belie the data, yet nonetheless appear to

"Grossman's conclusion is based largely on the finding that income-related differences in health result

from a constellation of factors associated with poverty and notjust from income alone. However, this does

not mean. as Grossman suggests. that neither increased spending on access nor income redistributionwill

be effective in improving the health of the poor.. Indeed, it is not clear what the relationship of income to

illness independent of other correlates of poverty even means, so long as these correlates (such as

environmental hazards and educational deprivation) remain correlated. Although it is true that in order to

eliminate the link between income and illness, the entire constellation of factors must be attacked, there is

no agreement about the best method for such an attack. and Grossman's research does not directly

address this issue.

423

499
be gaining increasing acceptance. What accounts for the growing rhetoric of equality in the face of continuing evidence of inequality? Most fundamentally, the answer to this question probably has as much

to do with conditions in the larger society as with health care itself.4° The

last decade has been one of growing disillusioe. To many, high inflation

rates and declining economic productivity have implied the need for "lowered expectations" and reduced Government commitments, especially to programs for the disadvantaged_ In health care, soaring medical care costs have lent added urgency to this perceived need for retrenchment. Priorities in health policy have shifted accordingly and have ledalmost imperceptiblyto a redefinition of social "reality" (168), involving new

"facts" (access is no longer a problem for the poor) and new interpretations of old data (there is only a minor link between income and illness). The new reality is thus political as well as social: shifting political and

economic constraints lead to a new agenda for research that leads to new

implications for policy. As problems are redefined, new "facts" are

accumulated whose influence on our collective understanding may be less dependent on validity than on their congruence with the prevailing

political climate. Certainly, the new rhetoric of equality is well matched to the current ulood of fiscal austerity. For example, if income-related differences in

health are relatively minor, the income transfers such as those advocated by the recent Carnegie Council on Children (165)as Grossman and

colleagues point outwould do little to improve the well-being of children_ Also unnecessary are proposals (165, 169, 170) that aim to

eliminate differential access through universal coverage of prenatal and

pediatric services. Such conclusions suggest a conservative approach to

health care involving re aced public spending on problems of equity and

access. The only drawback is that this vision of reality, however politically

appealing, happens t..11 be an illusion_ Despite the growing belief that access problems have been solved, most of the evidence instead indicates

that they have not In moving beyond concerns of equity and access, that

is to say, we have left the facts behind. The new conservatism evident in many recommendations for health

care policy is presumably rooted in concerns of efficiency rather than of equity. Yet, in the long run, it is probably as inefficient as it is inequitable

to neglect the health of disadvantaged children. Short-run savings in the costs of public health care programs are likely to be trivial compared to

the long-run costs of lowered productivity due to impaired health and the costs of caring for later medical complications. In this new era of cost- consciousness, it becomes more important than ever to distribute health

care according to medical need. Concerns of efficiency and equity

converge. Increasing access to care for the disadvantaged clearly remains an

important national goal. This is not to suggest we should ignore other shortcomings of the present health care system, many of which have been discussed. Nor do I mean to imply that the health problems of the poor

4°The following argument was suggested by the interpretation offered in P. R. Lee. C. L. Estes. and S.

Solkowitz (167).

424
are attributable to lack of medical care alone. The multiple cond;tions of povertyinferior housing and sanitation, poor nutrition, environmental, and occupational hazards, educational deprivation, and various forms of stressundoubtedly play a far more important role. Yet, better medical care can alleviate some of the health problems resulting from adverse

social circumstance. Likewise, better health research can suggest more effective strategies for dealing with such problems. Today's policy decisions concerning children's health care will influence the well-being of the next generation. They should not be based on the myth of equal access.

Acknowledgments

I wish to thank Lu Ann Aday, John Bunker, Richard Gilam, Bradford Gray, Lorraine Klerman, Mary Grace Kovar, Bonnie Lefkowitz, Ralph Silber, and George Silver for many helpful comments and suggestions on an earlier draft of this paper; John Butler and Lee Schorr for general guidance and encouragement; and Natalie Fisher and Kathy McFadden for expert typing and technical support. Assistance in obtaining new

analyses r-f data from the Center for Health Administration Studies was graciously provided by Lu Ann Aday.

425
A. Dependent M $& of Ambulatory Cars Use

Type 01 Care Coding

Proporlion of

Number Valiance

of Mean Explained

cosse Value (FfrIl

RA-nEPer-OoprrRoLLED USE Prevemlive Cam

1.Plumber of preventive health examinations reported by respondent

2. Frequency of children's preventive health examinations

belisllan al Care

3-Dkl person have any visits to usual

provider during last 6 months?

4.Did chid have any visits to Leased

provider during last 6 months?

5_ Has chid over had a (nonschool)

hearing or ear examination?

6. Has chid ever had a (nonschool) vision or we examination?

7.Did chid see a doctor for a past

ear problem?

PHYSICIAN-CONTROLLED USE

Follicwup Came &Number of followup visits per machcal condition to usual provider by

parson in last 6 months

9.Number of foilowup visits per medical condition to usual provider by

chifd in last 6 months

Nledicallan

10_ was medication prescribed for anyone in family during last 6

nionths?

0,1,2+ 679 1.50 0.19

1 IM never 1,206 2.60 0.27

2 =when

needed

3= every

year 4 = every 6 months

1 =yes 3,0332 0.43 0.19

0= no

1 =yes 1.206 0.57 029

0= no

1 =yes 1.206 0.43 0.24

0= no

1 =yes 9595 0.29 0.15

0= no

1= yes 3714 0.75 0.18

0= no

number of

visits

number of

visits

yeS

6902-5

4155

5735

3.10

2.77

0.76

0.12

0.13

0.12

0= no

1 indicates the proportion of variation in each use measure explained by an equation containing all

of the independent variables listed in appendices B and C.

2Includes both children and adult*.

Valued only of children aged 4-11 Asked only of children who reported past ear problems.

eAsked only of adults. ctikken, and families that had visited their usual providers more Man 017C0

during the 6 months prior to the aurveY- The estimating equation inciud for two indicators of illness severity (children's illness

index, and average number of follalwak per condition).
aggismills R individimil and Fondly Chsorcierienlas in thy logramion Model of Asseaukillasy tree

ChsraciarieNce Coding Years Value

iihrees +es'

Childs Niness index (a weighted proportion

of the loliowinsp preensturity, ear problem, hearing test tenure, eye problem, vision test

tenure, sinus trouble, hay fever, asthma. ec- zema, hives, chronic food energy, more

than 3 colds/year)

Chikrs ear illness index (based on ear problems and hearing test failure)

Child's eye illness index (based on eye problems and vision test failure)

Does person have a current medical or health probienfict

Monographic Factors

Individusrs age (years)

individual's sex

Motherhood (age -sex interaction)

Family Structure Age of head-of-house (years)

Sex of head-of-house

Family size

First-born child

Socioeconomic Factors

Family income (ratio to poverty level)

Occupation of head-of-house

Education of respondent (years of school)

Race

Length of residence in D.C.

Finmscii Coverage Private health insurance

Public assistance

continuous index

from 0= no problem, to 1 = all problems

0 = no problem, to 1 =both

0= no problem, to

1 = both

1 =yes, 0= no

age; age2; or (1/age + 0.5)

1 =female, 0 = male

age, for females 15

to 45 years; 0 for other females and

all males

age

1 =female, 0= male

number of members

1 =first born, 0 = subsequent child

0 = below poverty, to 7 =seven times pov- erty

1 = blue collar

0 = white collar

1<8 2=9, 3=12, 4=13-15, 5=16+

1 =black, 0 = white

number of years

1 =yes, 0= no

1 =yes, 0= no

4 33

0.11

0.25

0.22

0.10

17.4

0.53

34.3

0.31

4.5

0.36

2.1

0.56

2.96

0.93

19.0

0.71

0.27

427
Appendix bodiluldeel and Fondly Clismactedellos In the Regreasion Model of Anibal Wary Use (Cont.)

Cheascessistice Coding Meese Value

resillo4teledied 111111hades of Respondent Beast in preventive checkups (index based on three questions on value of asymptoratis 4110111ffinations)

Tendency to consult a physician (index. av- eraging responses to seven questions on

illness symptoms and how likely nmpondent vocadd be to car fault doctor for each)

Salience. of health (index of frequency of discussion about health matters)

Fordamskonal health orientation (Indus based on thermometer ownership and use)

Social alienation (Index based on Smile's

(1966) anomie assassin's)

1 gin low, to 4 high 3.3

1 iverY ury. to

4 wiry sower

3.0

1 inever to 1_9

4 ims vary frequently

1 don't own thaw- 2.3

morneter; 2 amiown but don't us regularly; 31own and

use before calling

physician

0 an not alienated. to

1 very alienated

0.62

'Only one illness mama* appears in the correspcsiding use s. -elation; e.g.. ear illness in ear WORM

equation. general Melees Sodom in &month visit equations. etc. 2Appeare only in use equidk3ns pertaining to adults (immures 1. 3. and 8 in appendbc A) 301lierent functions, forme for age vivre Included in diftenont use equatione based on preliminary

analyass, as described in Dutton (156).

428
Aggsamilit C. IMai Care illpoleas Failures in the Regression Model of Ambula411 se

Ilarviswe Moen Value

Pirmooli lisnisee

Provider charge Indere based on average

emerges for pediatric exam, tretdrnerst of aer infection, urinalysis. hemoglobin and

throat cultureenonpoor families

Provider chrome index (as above)poor

la a/ 61

Time rerMea Distance to provkiernonpoor familieez

Distance to providerpoor families

Waiting time in provider's office

Orgenizelionel illerviers Proportion of patients seen by appointment

Days waited for an appointment or w

to be seen

Humber of hours per week office is open

for seeing patients

Adequacy of coverage clewing off-hours,'

Praclice taverns

Coordination with other physicians' practices

Proportion of patients using practice as

regular :mums of care

Economic level of most families in practice

value of charges av- eraged over listed

senricee-11011p0Or families

charge indexpoor

families

number of miles

(0-12)--nonpoor

families

number of miles

poor families

number of minutes

(0-95)

1 -none, 2 i less

than half, 3 = about Ralf. 4 = more than

half, 5 me, all

days (0-95)

total hours open

(8-168)

1 gs inadequate (no

formal arrangements) 2 = adequate (an- swering service or

referral to ER) 3 =may adequate

(coverage by MDs

in this or other

practice)

101. low (solo practice) 2 = medium

(share personnel and/or facilities) 3 ;high (share patients with other

MDs)

1 = 0-2596, 2=25-50%

3 .50-75%, 4 = 75-100%

0 = mixed income

levels, 1 mio low in- come only

435

4.42

4.56

3.1

2.5

35.2

3.1

9.6

48.0

2.2

1.9

3.7

0.50

429
I: PI vi 0 0

0 v.'

0
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434 4 4
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THE ORGANIZATION OF

PRIMARY HEALTH AND

HEALTH-RELATED PREVENTIVE,

PSYCHOSOCIAL, AND SUPPORT

SERVICES FOR CHILDREN AND

PREGNANT WOMEN

by BONNIE LEncowrrz, M.P.A. and

DENNIS ANDRuus, Ph.D.

INTRODUCTION

The organization of primary health, preventive, psychosocial, and

support services can be used to further two stated objectives of the Select Panel for the Promotion of Child Health:

Overcoming gaps in access to health care for medically under- served children and pregnant women Ensuring provision of health-related preventive, psychosocial, and

_ support services to all children and pregnant women Solutions to gaps in service and the provision of adequate services greatly rest in the organization of primary, or entry level, services provided by individual physicians; group practices; hospital outpatient departments

(OPD's) and emergency rooms (ER's); health departments; health maintenance organizations (HMO's); the National Health Service Corps; community and migrant health centers; the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program and similar screening efforts; Head Start; and some mental health, school health, family planning, and

disease control programs.

441 447
Essential primary care services for children and pregnant women have

been listed by the Panel as follows: (1) Health Services Primary and Preventive Services Family planning Prenatal and postnatal care Well-baby care

Immunizations

.=-Pieveiritive dental services

Screening-periodic examinations for hearing, vision, acute,

and chronic diseases

Diagnostic laboratory services

tric treatment

Ambulatory surgical treatment for minor conditions Pharmaceutical services

Dental eXatOillatiOUS and treatment

Referral for special-inpatient care when appropriate

(2) Health-Related Services Health-Related Preventive Services

Genetic screening and counseling Counseling as part of prenatal care Parent education

Nutrition education Parent and child counseling on environmental hazards

(accidents, poisons) Counseling at periodic examinations Support Services Outreach, especially to children and pregnant women who

have no regular source of care Transportation Social services when economic or social problems affect

heal=

Service coordination and linkage Day care to facilitate health services Home health and homemaker services

Environmental intervention (sewage, water, home safety)

Psychosocial Services Screening for language, developmental, learning, and emotional problems Crisis intervention Primary mental health services, including family counseling

and family therapy Services for abused or neglected children and their parents T! ,e organizational division between primary and preventive health and

health-related services is not clearcut. For example, many of the settings

for primary health care services for underserved populations also provide health-related services, and may succeed because they combine both.

Furthermore, in examining models of organization for the health-related

services it is important to include providers who undertake these services

alone, or in conjunction with certain preventive health services, such as

442 4 4 S
immunizations, screening, family planning, or a full range of primary care

services.

HOW CAN WE OVERCOME GAPS IN ACCESS TO

PRIMARY AND PREVENTIVE HEALTH SERVICES

FOR CHILDREN AND PREGNANT WOMEN?

Lack of access to primary and preventive health services remains one of

the Nation's most pressing health problems. Some observers believe that

the single most important child health goal should be to make these basic health services available to every child and pregnant woman. In "Children's Health Care: The Myth of Equal Access" (see chapter III), Diana Dutton argues that, despite substantial 1.-apr.J.rements in

insurance coverage and the apparent narrowing of utilization gaps for

low-income people, certain groups of children and pregnant women (the poor, minorities, and rural residents) still lack adequate access to primary

care services. Moreover, the gaps in access and nonmedical factors such as housing, sanitation, and nutrition still contribute to lower health status. Some poignant examples of continuing problems associated with under- served areas and population groups follow: The black infant mortality rate has decreased over the last decade, but it is still 23.6 per 1,000 live births, nearly double that for whites (1) Poor and nonwhite children are hospitalized twice as much as all other children (2). Persons in medically underserved rural areas have 45-percent higher hospital utilization and 22 percent more chronic limitations

than those in all urban areas (3).

Who Lacks Access to Primary Care?

A substantial proportion of the poor and near poor cannot pay for care and have no insurance coverage. Many of them (and others) have no primary care providers either in the areas where they live, or within

reasonable travel time, or they find that the providers in their areas do not accept them as patients. Approximately 27 mullion personshalf of them

are childrencan be said to lack access to a regular source of private

sector primary care.'

Need Estimated From Survey Data

One method to estimate need from survey data is to calculate the number of children who lack a regular source of care or who rely on

hospital OPD's or public clinics. In 1974, 53 out of 67 million children cited a private physician as

their regular source of care. Six million were receiving care in a

'Nearly half are receiving care from one of the (c.ru types of planned,. subsidized primary care programs.

443
hospital OPD or public clinic, and 7 million had no regular source

of care. This last group is considered underserved because without

comprehensive primary care programming, their care is likely to

be fragmented, episodic, and often too is Le in the cycle of illness

(4, 5). Thus, 13 million children can be called underserved (6).2

This figure is confirmed by the results of a more recent study

funded by the Robert Wood Johnson Foundation which estimated from household survey data that 26 million personsapproximately half of them were childrenlack a regular private sector

primary care physician (7)

Need Estimated by Geographic Clustering

The organizational solution to these access gaps depends largely on

attraction of a physician or establishment of a program to provide primary

care in a specific geographic area. Thus, it is also useful to estimate need

based on a geographic clustering of persons in an area that lacks sufficient

primary care providers to meet their needs according to an agreed upon

ratio. However, this method is not sufficiently refined to identify many

areas where providers will not accept low-income Medicaid patients.

Although somewhat different populations are sure to be counted by

using the geographic versus the survey method, the estimates of needs are

very similar. The ratio most often mentioned is 1 primary care provider to every

2,000 persons. This ratio is fairly conservativehigher than that found in

HMO's (1:1,500 for a population that is typically healthier than persons in

underserved areas) or proposed by experts (e.g., 1:1,750 suggested by

Schonfeld (8)), and similar to those suggested for nonpoor rural areas

(1:2,000 cited by Bridgers (9) in Alabama).

By using the ratio of 1:2,000, 28 million residents of rural and inner ,4ty

areas lack access to a regular source of primary careroughly half, *k million of them, are children. This estimate is derived by calculatin,;

number of primary care providers necessary to bring all rural counties

all high-poverty urban census tracts up to the target ratio. Currently

14,000 additional providers are needed to serve those persons without

access to primary care. If one assumes that future physicians will locate

voluntarily in underserved areas in the samc proportions as they do today,

increased overall supply will reduce the need figures to 13,000 additional

primary care providers to serve 26 million persons in 1990 (10).

The population geographically defined as medically underserved can be

further subdivided according to the characteristics of the areas:

High-Poverty Underserved Areas. Twenty million persons-10

million childrenlive in rural and inner city areas that are not

only medically underserved but where at least 20 percent of the

population is under the poverty level. These areas share the

following characteristics: Low-birth-weight infants and high infant mortality rate

A high prevalence of activity-limiting chronic conditions

2Unpublisbed data compiled by Kovar.

444
High rates of illiteracy Prevalence of poor housing, inadequate water and sanitation

systems, and poor nutrition Prevalence of poor housing, inadequate water and sanitation

systems, and poor nutrition Lack of access to care is most intractable in these high-poverty

areas. It is particularly difficult to encourage the location of providers in multiproblem communities that may be unattractive places to live and are largely unable to support a private medical practice. Families in these areas often do not have resources to

travel for medical attention. Finally, poor living conditions coupled with an ignorance of good health practices curtail the

effectiveness of medical care.

Other Underserved Areas. Approximately 8 million more per- sons-3 or 4 million childrenlive in rural underserved areas

where some of the same conditions are present although the level of poverty is not as high. In these areas, environmental problems may be less severe and a greater proportion of the population has

financial resources that enable them to seek care elsewhere.

However, these areas still lack providers because of their geo- graphic isolation and the lack of a sufficient population base to

support a standard medical practice.

How Are We Meeting Primary Care Needs?

Of the 13-14 million children without access to a regular source of private sector care, between 6 and 7 million will be -served in 1981 by

subsidized programs sponsored by Federal, State, or local governments; nonprofit agencies; and community groups. We have divided these

subsidized programs into four groups, identifying overlap where possible. First, Federal programs will serve 4 million children in FY 1981. They

include community and migrant health centers, independent national health service corps sites, and maternity and infant care and children and youth projects. Most programs are comprehensive in nature and provide health-related preventive services and support as well as some psychaso- cial services and primary health care. Second, health departments in cities of over 100,000 population provide primary care to roughly 500,000 children (II). Some health departments

receive Federal primary care funds, and the degree of overlap with the

first group is unknown. Third, a number of inner city hospitals serving as "family doctors" for

the poor have taken steps to convert their OPD's to comprehensive primary care centers or group practices. Similar to local health department programs, some hospital-based projects receive Federal primary care

funds, including 60 hospital-based community health centers, and 50 maternity and infant care and children and youth projects. Children

served in these projects are included in the 4 million children previously

cited who are receiving federally sponsored health services. Also, the Robert Wood Johnson Foundation sponsors 85 OPD -demonstration

445

451
projects. However, information is unreliable regarding how many children

arc served by these or other reformed OPD's that are not federally funded. Over 1,000 innovative rural primary care projects are subsidized by the

Federal Government, the States, private foundations, and communities.

About half receive Federal primary care funds and are included in the

first group mentioned earlier. Non-Federal rural projects roughly serve 2

million additional children (12).

Federal Primary Cme Programs

Federal involvement in comprehensive primary care began in the 1960's

when first the Department of Health, Education, and Welfare (DHEW)

Children's Bureau and then the Office of Economic Opportunity funded demonstration centeri with a broad range of health, health-related,

economic-development, and employment-related objectives. A discussion

of three Federal primary care programs follows.

Community and Migrant Health Centers

Community health centers were first funded by the Office of Economic

Opportunity in 1966. A similar public health service program began in

1968; in 1973, all program authority was given to the Public Hear::

Service. Approximately 150 early centers were funded by project grants to

community groups and were characterized by user-majority boards;

employment of community residents; fairly large size, significant capital investment; and provision of a full range of preventive and support

services as well as basic medical intervention.

Two variations from the original model occurred during the mid-1970's.

First, new centers, known as "Urban and Rural Health Initiatives," were

restricted to a narrower medical approach to care, and health-related

services were also reduced in existing centers_ Prom administrators and

beneficiaries criticized the narrower range of services and in 1978 were

successful in obtaining legislation that required that most of the services

be restored. Second, new centers were smaller and less capital intensive_

This departure from the original model was received positively because it

provided greater flexibility for meeting the needs of small communities_

Despite attempts by the executive branch to cut back the program in the

early and mid-1970's, continued Congressional interest helped maintain

growth in small increments. Between 1977 and 1981, the executive branch

and Congress supported expansion. Funding increased more than 60

percent and capacity has doubled. In FY 1981 roughly 1,000 d-nrrununity

and migrant health centers will serve nearly 6 million persons, including 3

million children, at a grant cost of $398 million. Nearly all current efforts

are in very poor underserved areas. The average rural center today has operating costs of $400,000 and

employs 4 primary care providers; the average urban center has total

operating costs of S I million and employs 6-10 primary care providers_

These centers are still funded through project grants, and nearly all have user-majority governing boards and are required by statute to
provide most primary health care, trans; ortation, and some support services. Home health, dental, bilingual and outreach services, and

health-nutrition education must be provided if a need has been demon- strated; environmental and psychosocial services are optional and often

supported by other grants.

Maternity and Infant Care and Children and Youth Projects

The Federal Government also funds primary care projects for children

and pregnant women indirectly through the Maternal and Child Health

(MCH) program of formula grants to States. These programs w=e originally funded through direct project grants in 1962 by the Children's Bureau of what was then DHEW. Children and youth projects resembled the early community health centers in their

range of services, but focused on the particular care needed by children. Maternity and infant care p:-oject grants focused on high-risk pregnancies and newborns although some primary care was provided. Both projects had user advisory boards, as distinguished from user-governing boards. Starting in 1974, funds for children and youth and maternity and infant care projects were incorporated into the State formula grants of the MCH

program_ States were required to maintain at least pre-1974 levels of service, and it was hoped that they would further replicate these projects

in areas that still laded access to care. However, with no increases in

funding, most States chose to continue their other MCH activities rather

than to increase the projects they regarded as federally imposed. In FY 1981, 88 maternity and infant care projects with $62 million in Federal grant funds will serve about 450,000 mothers and 300,000 infants. Ninety-six children and youth projects will serve about 600,000 individu- als with $65 million in grant funds.

The National Health Service Corps

The National Health Service Corps had a slightly different origin from

the other programs, but it is now operated as an integral part of the Federal primary care system. It ;s responsible for deploying health

professionals, some of whom hz- service obligations because of scholar- ships received in training in uni .rserved areas. When the National Health Service Corps was initiated in FY 1971, most physicians were placed in independent sites and many were placed in

areas with the potenth for self-sufficiency in health care. This placement occasionally led to conflict with physicians in private practice and left very poor areas unserved by either private or public providers. The current emphasis is on combining provider placement with the broader services available in primary care centers in an attempt to better meet the multiple problems of such areas. In 1981, the Federal Government will deploy 2,500 primary care practitioners at a field cost of $87 million. About 65 percent of these practitioners will be placed in community and migrant health centers. The

remaining 600 will serve in 270 independent practice sites that comprise a

slightly different model of health care delivery- Health-related preventive,

447
support, and psychosocial services are not as likely to be provided, and most independent sites are located outside of very poor underserved areas_

A Federal Primary Care Model: Jackson-Hinds Comprehensive Health Center, Jackson, MississippP

The Jackson-Hinds Center provides an example of a Federal primary

care program operating at its best The Jackson-Hinds Center was initially

funded by the Office of Economic Opportunity in 1970 to provide health

and medical services in Jackson, Missisppi, and rural Hinds County_ The program consists of: A central facility located in a predominantly black section of

Jackson offering a comprehensive range of services to about 15,000 patients A rural satellite project at Utica serving appro-Y: -ately 4,000

patients, most of whom are black An adolescent health project at Lanier High School in Jackson Another adolescent health project serving students at the local Utica high school and junior college campus

Funding_ The Jackson-Hinds Center has a FY 1980 budget of $2.7 million. This budget includes: A $1_9 million Federal community health center grant Expected revenues from contracts and third-party reimbursements

totaling $779,000 from: $529,000 in Medicaid and Medicare reimbursements (63

percent of the center patients are Medicaid-Medicare benefi- ciaries) $250,000 in other revenues from contracts with the State Board of Health (certification of WIC beneficiaries), the State Medicaid agency (EPSDT screening), and the State Title XX

feeding program for the elderly

Services_ The Jackson-Hinds Center has retained many features that

characterized the early Of_E= of Economic Opportunity programs: An active out....ch program using community residentstrained by

the center

A strong emphasis on innovative programs designed to meet the

total medical, social, and environmental health care needs of the

target population In addition to basic primary medical care, the center offers a

comprehensive range of ambulatory health services including pediatric

care, dental services, X-ray, laboratory, mental health services, a pharma- cy, and nutrition counseling. The program also supports a variety of supplemental health care services that have made it possible to intervene

-iffectively in the cycle of poverty and poor health_ Among these services

are transportation; a child enrichment program providing education and

recreational services to high-risk infants and young children; and a

3Description from site visit and personal communication with Aaron Shirley, M.D., Director.

448

4
Department of Agriculture WIC supplemental feeding program for needy

pregnant women, infants, and children under 5 years of age. The Jackson-Hinds Center is also considered a pioneer in developing

effective environmental health services- Over one-third of all Hinds

County residents have no running water; one-third have no indoor toilets. rne rural Utica satellite operates a model environmental health program

under the direction of a Public Health Service sanitarian that uses very

simple measures such as building privies, improving drainage, and

delivering pure water in 1.,:irrels to reduce the adverse health effects of poor sanitation.

Staff Dr_ Aaron Shirley, the Center's director, is also president of the Mississippi branch of the National Medical Association and is a member of the Select Panel for the Promotion of Child Health. A native of

Jackson, Dr. Shirley attended medical school under a grant arrangement with the State of Mississippi whereby he agreed to return to Mississippi for 5 years to practice medicine. He became the first black physician to serve

as a resident at the University Hospital where he specialized in pediatrics. He has helped arrange medical training for a number of other Mississippi- ans who have returned to the area to practice. The Jackson-Hinds Center employs 130 health personnel and administrative support staff including the satellite projects. Among these person- nel are five physicians (one National Health Service Corps), five nurse practitioners (four National Health Service Corps), three dentists, a

sanitarian, three environmental health managers, a nutritionist, three nutritional health aides, five outreach workers, and two social service workers.

Service Linkages_ Service linkages with other sources of care have been built slowly, in part because of what the Jackson-Hinds Center's staff consider remaining racial and economic discrimination. The center maintains its own mental health services because the area's only

community mental health center, on the opposite side of town, is unsympathetic to the poor and minority groups. The Jackson-Hinds Center has no obstetrician, but can arrrange for prenatal care and delivery

at the University Hospital. Inpatient care arrangements with their other major hospital, St. Dominic's, are not as strong. That institution has

refused to grant admitting privileges to new physicians on the Jackson- Hinds Center's staff although new physicians in other group practices are

automatically granted these privileges if an existing member of the group

is on the hospital staff_

Primary Care Programs Sponsored by Urban Health Departments

Health departments in the United States originated during the mid- nineteenth century in response to epidemic fears and in reaction to

demands by the poor and underserved for improvements in environmental cond: ions and in circumstances of neglect. Their initial goals focused on

sanitation and public health protection, and reached targeted populations with discrete personal health services usually provided in clinics or dispensaries.

449

z-3,5
Some of today's health departments have continued the emphasis on

public health and discrete personal health services_ However, health departments vary more in the scope of services and

orientation than is generally recognized. Some urban health departments

have provided comprehensive primary care for the underserved population for many years. Others, partly stimulated by the Federal involvement

in primary care during the 1960's, began to operate more comprehensive primary care centers during the last decade (11). Three types of health

department programs have been identified (13):

Urban health departments delivering comprehensive primary care

in health centers and satellite clinics

Urban health departments offering discrete services (e.g., screening, family planning,, and well-baby clinics) through outreach, mobile clinics, and satellites. These services may also serve as

entry points to other available programs. Rural health departments offering somewhat less comprehensive primary care to a large, sparsely populated area_ The delivery model may be satellites or mobile clinics. A discussion of rural

delivery models follows. Health departments also vary in sources of funding. The larger rural health departments found mostly in the Southeast United States are

heavily State supported while urban health departments, especially in

New England, rely primarily on local support (14). Those departments providing comprehensive care are usually either direct recipients of

Federal primary care funds (e.g., Denver, Cincinnati), or have created

networks including Federal programs and are funded from their own

sources (e.g., Boston). By using a rough extrapolation of existing data, approximately 2.5

million children get care from public health clinics (6); about 500,000 of

these may be getting more comprehensive primary care from larger urban

health departments (11).

A Health Department Model: Denver Neighborhood Health Program, Denver, Colorado4

One exemplary model of health department primary care is the

Neigh/ porhood Health Program operated by the Denver Health and

Hospitals Agency. This program includes: s Two comprehensive health centers

Seven satellite health stations

Ten well-baby clinics The Neighborhood Health Program recorded 343,000 patient visits

during the year ending June 30, 1978, including 84,000 pediatric visits and

34,000 maternity and infant care visits.

Funding. The Neighborhood Health Program had a budget of about $12

million in FY 1980. It receives Federal funds from the community health

"Description from a case study by Moos and Miller (13) and personal communication with Arden

M.D.

450

u
center program and for maternity and infant care and children and youth projects (total S900,000), Medicaid reimbursement ($3.9 million), and Medicare reimbursement ($2.25 The State of Colorado reimburses the Denver Health and Hospitals Agen-cy for 50 percent of the costs incurred by those clients with no

alternate payment mechanisms. The City of Denver pays the remainder of

the costs_

Services. The two comprehensive health centers provide a full range of primary care services, including adult medicine, maternity, faraily plan- ning, gynecology, pediatric, and dental care. The smaller satellite station=

offer many of these services but they will refer clients to a comprehensive

center or to the hospital for some specialized treatments

Staff The Denver Health and Hospitals Agency is headed by Abraham

Kauvar, M.D., who is credited with having recruited high-quality staff, integrating ambulatory care into a citywide network, and attracting

nonpoor patients who previously used the fee-for-service sector into the

system. Staff in the Neighborhood Health Program total 550. Nurse practition- ers are primary providers of care, and indigenous neighborhood aides work with social workers to manage caseload and develop a family- oriented approach. Primary care staff at satellite stations usually includes

two pediatricians, two child health associates or pediatric nurse practitioners, a part-time physician, and a nurse practitioner for obstetrics.

Service I Mirages The Neighborhood Health Program is fully -.4.grated with the traditional public health activities of the Denver `- wealth and Hospitals Agency. For subspecialty and inpatient services the 385-bed Denver General Hospital and its outpatient clinics are also part of the

network_ Clinical social workers assist clients in obtaining other services, and

field nurses provide extension of ambulatory care services through home health visits. Mental health services administration is separate from the Neighborhood Health Program, but a psychiatrist, a psychologist, social workers, and psychiatric nurses (federally funded through the National Institute of Mental Health) provide services at the two comprehensive health centers.

"Reformed" Ho al Outpatient Departments

Approximately 4 million children receive care in traditional hospital outpatient departments and emergency rooms that have been characterized by numerous uncoordinated specialty clinics, lack of patient- oriented

case records, long-waiting times, and excessive use of emergency facilities. However, recent changes in some traditional hospital outpatient services have occurred for several reasons. First, utilization of outpatient

5lncreased use of their satellite stations has dacweased the use of less comprehensive well-baby clinics.

451
departments and emergency rooms has increased substantially. From

1952 to 1977, emergency room visits rose from 10 million to 62 million

(Ai). From 1962 to 1975, annual outpatient visits rose from 45 million to 128 million (16). It is now estimated that as many as 25 percent of all physician visits occur in outpatient department and emergency room

settings (17). Second, at various Government levels and among philanthropic foundations the realization has been that hospitals are the only

"family doctor" that many persons have and must therefore be included in

designing improvements in health care. Information on expenditures and number of persons served in "reformed" outpatient departments is extremely limited. Two major changes have occurred.

Primary Care Centers

.tai outpatient departments have been converted to primary care

centers providing comprehensive services through staff physicians, nurse practitioners, and other health-related personneL These progrms are

supported by city, State, Federal, and institutional resources_ Of the 1,000 Federal community and migrant health center grants in 1981, 60 will be hospital based. In addition, 16 of 88 maternity and infant care projects and 34 of the 96 children and youth projects are operated by hospitals. Finally, of the 85 hospital primary care projects funded by the Robert Wood Johnson Foundation, roughly one-third are primary care centers.

Group Practices

Hospitals have helped to develop and have affiliated with group practices for all or part of the outpatient care for which they are

responsible. These programs are supported by public and private funds. They vary according to proximity to the hospital, population served, organizational structure, and staff_ Some of the group practices provide

fewer health-related services than hospital-based primary care centers. About two-thirds of the hospital primary care projects sponsored by the Robert Wood Johnson Foundation are of this type.

A Reformed Outpatient Department Model: San Francisco General Hospital's Division of Outpatient and Community Services, San Francisco, California'

Originally aided by an Office of Economic Opportunity Outpatient Improvement Grant, the San Francisco General Hospital has instituted major changes in its outpatient department to improve efficiency, flexibility, and accessibility to the community_ The program uses a family- oriented comprehensive care team approach in the outpatient department and three community satellite clinics_ In 1979, 203,000 outpatient visits were made; 48,000 visits were to the satellites and the remainder were to

the hospital_

6Description from personal communication with Donald Fink. M.D.. former Director.

452
Fund The total budget for 1979 was $3.77 million of which

approximately $2.6 million were funded by the city, $800,000 were third- party payments, 3150,000 were direct-patient payments, and the remain- der were from Federal sources, including the community health center, family planning, and Title XX social service funds.

Staff Physicians from the University of California Medical School contract with the hospital to provide services in the satellites and the outpatient department Staff in the three satellite centers includes eight residents, two family health workers, a nurse practitioner, nutritionists, and, a social worker. These settings are also training sites for residents, nurse practitioners, and other professionals.

Services. The San Francisco program provides pediatric, maternity, fa_aily planning, adult, and family and nurse midwife care. Dental and mental health services have also been included at the satellite clinics, and health workers at these facilities provide outreach, followup, social services, health education, translating, and patient advocacy.

Service Linkages. Links with other hospital services are maintained

through an interdisciplinary team that includes physicians, nurses, and business staff. The program has developed a mental health program

together with the hospital and a transportation system to bring patients

from satellites to the hospital. External linkages include: Referral arrangements with community mental health centers Coordination with city public health nursing for special and

general pediatric services Community linkages, including referral arrangements with schools

(e.g., for family pla-nrkiTte and adolescent pregnancy programs) and community organizations (e-g., for child and sexual abuse)

Rini Health Delivery .Projects

Because the most serious gaps in access to primary care occur in rural areas, a variety of health delivery projects supported by State and

nonprofit sources predated most of the other subsidized programs discussed in this paper. For example, the Frontier Nursing Service was established in 1925 to provide primary health care in remote areas of Kentucky (18). Construction and operation of rural health centers has been supported by private four ins lice the Commonwealth Fund, and

some centers have been supported in conjunction with State health

departments (19). Similar programs were sponsored by labor unions such

as the United Mine Workers for their members.

Today subsidized rural health care is provided by a variety of similar programs as well as federally funded centers and rural hospitals (20). Recently the Department of Health and Human Services (DHHS), in conjunction with the Robert Wood Johnson Foundation and the University of North Carolina, undertook a major evaluation of subsidized

rural projects. The first phase of this evaluation, recently completed, is an

attempt to quantify and describe the scope of such projects. Data are

4 53 453
available for approximately 1,000 of 1,100 projects that ,iere found to be of several types.

Federally Funded Rural Prinzary Care Centers

Of the 1,000 rural projects for which data are available, approximately

half arefederally funded_ These projects were previously described in this

paper.

Non Federal Rural Health Delivery Projects

The remaining 500 rural projects are not federally funded. They

include:

Freestanding primary care centers that provide most of the health

and some of the health-related services required in federally

funded programs.. A large proportion of these projects are funded

or operated by State or local health departments. Subsidized physician practices that usually provide traditicnal primary hearth care services. Small satellites staffed by nurse practitioners that provide an entry point into a system of are and are affiliated with hospitals or physician practices. Together, these non-Federal rural projects serve 4.8 million persons, over 2 million of whom are children. The median number of physicians per project is three.. The average cost per project is $270,000. One-third of

the revenues for non-Federal projects are direct payments from patients; one-fourth are from Medicare and Medicaid; one-fourth are from private

insurance; and the remainder are from grants, donations, and other

sources.

A Rural Delivery Model: North Carolina Rural Health Services?

The North Carolina program was initiated in 1973 to increase the availability of primary care in underserved rural areas of the State. Communities initiate requests for aid in establishing a rural center and are

judged on the following criteria: Need for primary medical care (and certain other community

characteristics) Degree of community support for the program

Availability of physician backup for the health center team

Ability to recruit physicians' assistants or family nurse practitioners

A viable, efficient management plan Currently, 27 centers exist; most are in towns with populations of 500-1,000 and serve an estimated 80,000 people.

7Description from personal cornnsunication with James BernsteM. Director. North Carolina °trice of

Rural Health Services.

454
Funding. North Carolina gives the community up to $25,000 for construction and renovation of a facility. The community is required to match the amount by 20 percent contributed from a minimum of 750

families to indicate their interest The State also provides training

assistance for nurses and physicians who will provide the services. The State expects each clinic to become self-sufficient (usually over 3 years)

through patient fees, private third-party payments, and Federal reim- bursements

Staff: The typical clinic includes one or two physicians' assistants or family nurse practitioners, a one-half day a week backup physician

(usually within 15-20 miles of the clinic), and a receptionist who may both perform laboratory tests and be responsible for bookkeeping. For ..nary

areas that have no physician, the training of a local resident as a nurse practitioner who will return to the area has been quite successful. The University of North Carolina Family Nurse Practitioner program assists

in providing staff for the rural clinics. However, the program also includes physician group practices where they are preferred by the community and where physicians can be recruited.

Servi.-es. Clinic staff provide basic primary care services, including

treatment of minor injuries and illnesses, physical exams, checkups, health

information, and monitoring of chronic conditions, Where physician

group practices exist, more extensive primary care services are offered.

Service Linkages. The rural health clinics use community health centers and Appalachian Regional Commission programs for referrals, as well as private physicians, hospitals, and area health education centers.

How Can We Close Gaps in Access to Primary Care?

Issues and Options

The following issues are re.evant for er.isuring adequate access to

primary care for children and pregnant women: Which, if any, of the organized primary care settings previously described should be expanded, and what should be the relative

emphasis each l'ype of program receives? What should be the relationship between grant funding and

insurance revenues to support organized primary care programs and what level of Federal funding is appropriate? What adn inistrative arrangements are most likely to translate Federal funding into effective, efficient primary care services?

SAIthougAi ..aost clinics arc not in CM y poor areas, between 4 and 15 percent of the patients have no

reimbursement source; therefore self-soificiency is a problem for some clinics.

9Pre- and postnatal care and maternity services are not provided directly.

455
Organized Primary Care Semis for the Underserved

Options

Each of the programs described earlier can be considered an appropri- ate model to be used to close gaps in access to primary care_ Because they

are, by definition, innovative attempts to solve certain problems not dealt with by the private, nonsubsidized sector, they all possess certain desirable attributes for primary care organizations. However, they vary in the degret. to which they meet specific criteria and can be evaluated according

to these variations.

Criteria for Decision

Criteria for evaluating the different types of subsidized primary care programs include the absence of access barriers, comprehensiveness of primary health and health - related services, continuity of care, 11.1.ks to other levels and sources of care, participation and satisfaction of consumers, clinical effectiveness, and efficient operation at reasonable cost_ The first five items are similar to those listed in a report by the

Institute of Medicine (21): the sixth and seventh reflect empirical evidence of how well programs are working. More evidence exists about federally funded primary care centers than

about other programs. This condition may appear to bias the presentation; however, if characteristics of the other programs are similar, it should be possible to assume that they would share the attributes of

federally funded centers.

Fliminating Access Barriers. Substantial evidence suggests that federally

funded primary care programs eliminate a variety of access barriers. According to recent figures, 80 percent of the families served have

incomes under 150 percent of the poverty leveL Most pay nothing for care although those with family incomes above the poverty level are charged

on a sliding fee scale. Eighty percent ofthose served are black or Hispanic

(22)- Moreover, the programs are usually placed in areas with substantial

shortfalls of primary care providers. Some complaints have been voiced

regarding competition with private physicians or State and local govern- ment efforts. However, studies indicate that a majority of urban users of

Federal primary care centers previously received care from hospital outpatient departments and emergency rooms (23-25). In addition, evidence suggests that both urban and rural centers have increased the utilization of health services (26-28). Rural health delivery projects are aimed at overcoming some of the most serious geographic barriers in the Nation. Thus, focusing on the poor and minorities is important but in some areas it may be a secondary focus.

Accc -ding to one survey more than 75 percent of users in non-Federal rural projects are white (DHHS-Robert Wood Johnson-University of North Carolina). The fact that about 6g) percent of costs are covered by

patient payments or private insurance indicates a large nonpoor population.

456
Hospital outpatient departments and health department clinics also

lower certain access barriers by their location in underserved areas. This

fact is evidenced by the high proportions of the poor and minorities currently served. Of the 6 million children served in 1974, 60 percent were poor or nearly poor; 50 percent were minority (6). However, unless the outpatient departments are reformed along one of the models suggested

earlier, the lack of oreptki7ation and insensitivity to needs of the underserved are barriers to patient-initiated use. Thus, care may be

fragmented, and important preventive services may not be provided in

sufficient volume (4, 29).

Comprehensiveness of Services. The range of health services offered by a health orgarti7-ntion can be an important determinant of quality_ In

addition, the range of health-related services offered by an organization

can be essential in overcoming access barriers. For example, support services such as outreach, provision of a bilingual staff, transportation, health education, and environmental intervention may be necessary to

bring the poor and underserved to the clinic and maintain effective care

for them (13). The provision of psychosocial services with primary health

care is an important means of reaching those who need basi' mental health care (30). Health-related counseling and education are essential components of preventive services (31). Federally funded primary care centers emphasize preventive and

health-related support services and must provide funds to many as a

statutory requirement_ This provision is a major strength; it helps them

reach populations that otherwise might not be reached and adds to the

effectiveness of health care. Evaluations of the Federal programs often

credit the range of services for success in overcoming access barriers and

ensuring appropriate care. For example, Birch and Wolfe (32) compared pregnant women who used community centers with outreach services,

traditional hospital outpatient departments, and Medicaid physicians and

found that the women who us:v:1 health centers were most likely to be

satisfied with their obstetric and pediatric care and most likely to make postnatal visits. However, controversy regarding the range of required services exists.

Some health departments consider the Federal service requirements unnecessarily rigid and believe that some of the required treatment and

many of the support and psychosocial services are unnecessary luxuries in

a primary care setting. Hospital outpatient departments, on the other hand, may include a variety of medical and possibly psychosocial services

because of their past orientation to specialty clinics, but they may not always perceive the need for health-related preventive and support services. Rural delivery projects may simply lack the population base to

support a broad range of services, or they may be located in areas that are better off economically, making certain support services less necessary. Few studies have focused on the differential effectiveness of primary

care that less comprehensive than the Federal modeL More research is needed to determine which services are essential and the degree to which

lin ages can substitute for single-site delivery. The DHHS-Robert Wood

457
ohnson-University of North Carolina rural health evaluation may answer some of these questions.

Continuity of Care. In some ways, the concept of continuity of care is difficult to distinguish from that of the range of primary care services offered in a particular facility. However, continuity relates less to the presence of certain services than to how the care is organized for an

individual child and his-her family. A single, complete medical record, an

identifiable person responsible for case management, and appropriate

followup are presumed to be essential to quality care. Continuity in a

clinic or group setting can be further improved by assigning a child or a

family to the same team of providers for every visit. Moreheacrs studies of clinical management and quality of care, measured by recordkeeping, indicate that Federal primary care programs are at least equal and sometimes superior to other established providers

including private physicians, and that health department primary care programs are superior to private physicians and outpatient departments

(33-35). Many Federal primary care centers pioneered the team approach

as well and have found it very effective (35-37). Health department programs are placing increasing emphasis on

identifiable case managers and central recordkeeping, but may still need

improvement. The team approach is often difficult for health departments because of the persistence of supervisory structures along functional lines. Hospital outpatient departments experience the greatest problems with

continuity because of their specialty clinic orientation; indeed, breaking

down the fragmentation and initiating central triage and recordkeeping is one of the major goals of "reformed" outpatient departments. Some professionals have found the team approach very effective in accomplishing the needed change. In rural delivery projects, the decreased range of services and the necessity for frequent referrals may make continuity more difficult. On the other hand, the rarniliarity with patients that is possible in a small community and the employing of nurse practitioners interested in health maintenance and total care probably enhance continuity.

Links to Other Services. A primary care center's ability to form workable

relationships with providers of secondary and tertiary health care and

specialized health services is also essential for continuity and quality. Federally funded primary care centers can be very effective internally but they may find it difficult to establish outside connections. This situation can be traced to a history of direct Federal funding to

community groups, thus circuxnventiniz established providers and State and local governments. Today, problems with financial barriers, racial, and cultural discrimination and refusal by some traditional institutions to

accept these programs as sources of high-quality care still exist The difficulty of the Jackson-Hinds Center in ot 'aining admitting privileges

for its staff physicians is one example. However, problems can also be

related to lack of Federal, State, local, and private sector coordination in

selecting the location of programs. This factor can lead providers of

458
specialized or inpatient services to perceive Federal primary care centers as a threat.

Health department programs and rural delivery projects may face some of the same problems in obtaining secondary and tertiary care for their patients_ However, where these polgrants are part of the overall political structure in a community, resistance :nay not be as great. Some health

department clinics are part of a system including hospitals and some rural projects were established as satellites of hospitals or as part of a State health department network. Hospital outpatient departments have a major advantage with their built-in ties to all levels of care. Not surprisingly, some of the most effective solutions to linkage problems involve networks of federally funded centers, health depart- ments, and hospitals. The Denver program described earlier is one such

solution. Another example is the continuum of perinatal care created by Boston's Department of Health and Hospitals. Routinely, referrals are made from health departments and Federal primary care -enters to the

site of delivery and back, with careful transfer of records_

Participation and Satisfaction of Consumers. The strong community

participation in federally funded primary care programs and especially the

requirement that community and migrant health centers have governing

boards with a user majority was very important when much of the health

care establishment was perceived as being insensitive to the poor and minorities_ User-majority boards contributed to the acceptance of the project by and accountability to the target population, and use of preventive services helped foster a new generation of community leaders. However, conversely, the role of user-majority governing boards was not always well defined and sometimes led to infighting and inefficient operation. In addition, enmity has occurred between some user-governing boards and the State and local political establishment Health departments are representatives of a duly elected government, but that government usually covers a much larger area than the

neighborhood served by a primary care center, and government officials are not necessarily users of such centers. The small size of the target population of community -based nonfederally funded rural health projects

is an advantage as is community support through local fund raising (e.g., the North Carolina program). However, other rural projects are operate -1 by health departments or hospitals with little participation by the

communities served. Hospitals, especially those in inner-city areas, frequently have community advisory boards, but consumer governance is confined mainly to those "reformed" outpatient departments that receive

community health center funds_ To some degree the user-ma; r-lity governing board requirement has kept State and local governments and hospitals from applying for Federal primary care funding. TLis restraint has led to the creation of a new

primary care program by the Federal statute specifically for hospitals, with only a consumer advisory board. It has also led to an amendment allowing up to 5 percent of community health center funds to be allocated

to government units that are forbidden by their own laws to have user459 4,s5
majority governing boards. However, a number of hospitals and local governments receive community health center funding and adhere to the user-majority governing board requirement. Some DHHS regional offices seem to be more flexible than others in working out arrangements acceptable to both consumers and potential grantees such as hospitals and

government units. The issue of how best to enlist consumer participation, such as the issue of comprehensiveness of service, is a complex one where more research is needed before making major changes in Federal policy.

Clinical Effectiveness. A number of studies indicate that improvements in health status are attributable to federally funded primary care centers. Anderson and Morgan (38) found infant mortality decreased by 50

percent after the establishment of primary care centers in the rural South. Gordis (39) attributed a 60-percent decrease in rheumatic fever in Baltimore areas served by primary care centers to early detection and

treatment of streptococcus infections. The rate of hospitalization, which is a measure of both health status and

cost savings, has been shown to be reduced significantly by primary care

centers. An extensive baseline study in 13 cities and a followup study in 5

cities (Atlanta, Kansas City, Boston, Charleston, and East Palo Alto)

found hospital days were reduced by 25 percent for child and adult users of community health centers compared with all similar nonusers in control groups and 22 percent for users compared with those in control groups using a private physician (40). Similar results have been found by others

(41, 42). Finally, emergency room visits by children were reduced 38

percent by primary care centers in Rochester (43). Where hospital outpatient departments resemble comprehensive pri- mary care centers in services and organization, similar clinical effective- ness has been found. For example, Sussman (44) found that users of a hospital-based health center in Boston had significantly lower use of emergency rooms than nonusers. The provision of comprehensive primary care services by health

departments, at times in conjunction with Federal primary care programs, has also been associated with health improvements. For example, between 1970 and 1978, the Cincinnati (Ohio) Health Department increased first trimester prenatal care threefold and infant mortality was reduced by 8 percent During provision of primary care services between 1970 and

1977, Maricopa County (Arizona) had its low-birth-weight rate reduced by 16 percent, and Pickens County (South Carolina) had its nonwhite

infant mortality rate reduced by 38 percent, from 40.7 to 253, between

1970 and 1973.10 Finally, Chabot (45) found that Denver's Neighborhood Health Program resulted in a 25-percent reduction in infant mortality.

Reasonable Cost and Efficiency. Recently, federally funded primary care centers have shown an impressive record in reducing costs. In 1974, the average comprehensive individual encounter in a community health

center cost $44; in 1979, the same encounter cost $32 without allowing for

I°Personal communication from Arden Miller. M.D.
inflation. Another method of analysis is to compare community health

center encounters with visits by all Medicaid recipients, although the content of the encounter may be somewhat different. The average Medicaid visit for physician and ancillary outpatient services cost $55 in

1979, compared with the $32 per encounter in a community health center. The lower direct, or ambulatory care, cost of primary care centers has been attributed to lack of incentives to recommend excesE followup visits

(because most providers are salas ied), use of nurse practitioners and

physicians' assistants, and provision of preventive health services. The DHHS is currently seeking data comparing total inpatier t and outpatient Medicaid costs for users and nonusers of primary care centers. Direct costs in most health department clinics and non-Federal rural delivery projects are somewhat lower than costs in Federal primary care centers. because of the smaller range of services provided. Evidence of savings in total costs, including inpatient care, should be sought in these

settings as well, to compare the cost-benefit ratios with those in more

comprehensive settings_ Direct costs in hospital outpatient dept rtments tend to be higher than

those in federally funded primary care centers because of employment of more professionals, high overhead, and possible subsidization of inpatient care. Outpatient departments may pose serious problems with indirect costs because unlike freestanding centers, the incentive is to hospitalize patients. These problems have led designers of "reformed" outpatient departments to favor separating the outpatient department's administration and finances from the hospital's administration and finances_

Conclusions

Based on the previous analysis, it seems reasonable to recommend

additional Federal funding for startup and subsidies of services in each of

the organized prirr.ary care settings described earlier and specifically: That the current Federal model of comprehensive primary care, under Secti ,ns 329 and 330 of the Public Health Services Act, with placerie:At of National Health Service Corps providers be

considered the major method of expanding access to the underserved_ That funding for hospital-based primary care programs under Section 328 of the Public Health Services Act be increased to

provide better services to children who use outpatient departments and emergency rooms. That health departments be encouraged to apply for Federal primary care funds under the existing terms. Local systems that have combined Federal primary care programs with health

department or municipal hospital services, such as those in Denver and Cincinnati, seem especially promising. Variations

from the Federal model in services and consumer governance

should be studied carefully before departing from existing policy. However, program administrators should be flexible in working out arrangements that satisfy needs of consumers and grantees.

461
That DHHS fund demonstration service delivery projects that are

suited to rural areas with sparse populations, but which are not necessarily poor areas. In particular, the nurse-practitioner satellite model, which provides an entry point into a more comprehen- sive system could be emphasized.

Levels and Sources of Funds

Options

Various combinations of insurance revenues and grant funding are possible for the financing of primary care: Terminate grants and rely on insurance only Keep grants at current levels and rely on increascd insurance for growth Increase grant funding and use increased insurance in an

integrated growth plan Rely on grants only

Criteria for Decision

The options are evahated against the following criteria: likelihood of ensuring access to primary care, assurance that startup costs and healthrelated services in primary care centers are paid for, sensitivity to varying

financial needs of communities, and increasing sources of nondiscretion- ary funding.

Likelihood of Ensuring Access to Primary Care. Substantial evidence

suggests that improvements in the insurance system and private sector activities alone will not ensure access to primary care in underserved

areas. First, a DHHS review of 32 studies indicates that potential physician income is not a decisive factor in determining private physician

location. Studies varied in their emphasis on income potential, geographic origin of pro,ider and spouse, pla.e of training, social and cultural opportunities. professional relationships, and existence of practice setting. Second, althotzgh recent evidence suggests that physicians have recently been more likely r `tie in medium-sized rural towns, virtually no

increase was four : i>iaysician-to-population ratios in the two most rural county catc... and a slight increase was found in very poor urban or rural ar.:as .;). Third, even where physicians are present their acceptance of Medicaid patients is low. Among primary care physicians, 22 percent have no Medicaid patients and 63 percent of Medicaid patients comprise fewer

than 30 percent of their caseload. That portion of physician nonparticipation attributed to low reimbursement rates may be amenable to changes in

such rater. However, in a 1975 survey 40 percent of nonparticipating

physician cited "opposition to Government in medicine" as a reason; 25

percent cited "dislike for the kinds of patients enrolled" (47). Thus, organized primary care centers that recruit physicians interested

it sexving shortage areas nrovide a supportive setting and serve all )ersons

462

Ar4
regardless of income or social and cultural factors. These centers are an

essential element of ensuring access for the underserved.

Assurance That Startup Costs and Health-Related Services Are Paid For

in Primary Care Centers. Grant funds arc needed for startup costs and to

ensure that health-related but norumedicAdly specific services are paid for because changes in reimbursement may be slow, and even with compre- hensive insurance benefits, some of these services (especially support services) are inappropriate fer a reimbursement system that feeds into the private as well as the public sector, with insufficient opportunity for control.

Sensitivity to Varying Financial Needs of Communities. In the absence of a universal national health insurance plan, communities will vary widely

in their residents' ability to pay for health services. Because of their emphasis on poor underserved areas, existing Federal primary care

centers, hospital outpatient departments, and health department clinics

serve large numbers of persons with no ability to pay for services. Thus, grant funds are needed to subsidize the poor and near poor who currently

lack insurance coverage.

Increasing Sources of Nondiscretionary Funding. Although funding for Federal pr.sna ry care centers has grown significantly in the last 4 years, the proportion of costs covered by reimbursement or patient payments has also increased, from 17 to 38 percent, illustrating that insurance is an

important source of revenue. Moreover, the discretionary nature of grants means that expansion to meet the needs of the underserved, or even maintenance of current services, may not be possible if budgets are cut. Although some professionals have suggested that grant funding is easier to

target and more accountable than insurance, an option that does not also

include reimbursement revenues is not practical.

C- aclusions

The previous analysis indicates that options combining insurance and grant sources are most desirable. Thus, grant funding should continue. When improvements are made in insurance coverage, they should include not only expansion of eligibility and benefits, but also effective methods of paying primary care centers such as an all inclusive visit rate or some form

of prepaid care (ambulatory or all services), depending on the center's

size, desires, and financial capabilities. The amount of growth in primary care capacity will depend on the

interaction between grant and insurance sources. Table I shows the

impact of various combinations of reimbursement strategies and discretionary funding (primary care grants plus National Health Service Corps) on the capacity of health centers. The first reimbursement strategy assumes that the prop in of center

costs covered by reimburseme -*t and patient payments wia. LiAcrease from

the current level of 38 to 4, percent, because of passage of the Carter

463
TAME 1. impact at Mime nelraburserneat Obetegkas and Various L1111111111 cal

Macre downy Grant Funding on Prissier/ Caro Center Capacity

To genre S MIllion Pairsons

To Serve 10 To Serve 15

aillMon Persons Million Persons

Reimbursement

Strategy 01: Passage of CHAP: reimbursement

covers 45% of

program costs

Discretionary Funding Reirribursernent

Total Cost

Reimbursement

Strategy *2: Substantial

improvement in

insurance for

the poor; reim- bursement covers

60% of program

costs

Discretionary Funding Reimbursement

Total Cost

Reimbursement Strategy *3: Universal health

insurance; reim- bursement covers

75% of program

costs

Discretionary Funding Reimbursement

Total Cost

(1981 dollars in millions)

$400 $660 $990

320 540 810

720 1200 1800

$290 $480 $720

430 720 1080

720 1200 1800

$180 $300 $450

540 900 1350

720 1200 1800

NOTE: All estimates assume an average annual cost of $120 per person. 1981 dollars

Administration's Child Health Assurance Program, which expands Medicaid eligibility and benefits for children and pregnant women.

The second reimbursement strategy assumes that the proportion of

center costs covered by reimbursement and patient payments will rise to

60 percent because of the passage ofthe Child Health Assurance Program

and other significant improvements in insurance for poor persons."

ilUncler the adrn;nistration's National Health Flan. about 75 percent of health center costs would be

covered for about 70 percent of the people served.

464
The third reimbursement strategy assumes a comprehensive national health insurance plan that covers all health center users. Approximately 75 percent of costs would be covered by reimbursement; the other 25

percent, attributable to startup costs and health-related environmental and support services not appropriate for reimbursement, would still be dependent on grants. Under the first reimbursement strategy the amount of grant funding needed to serve the same number of persons is more than double that called for by using the third strategy (comprehensive national health

insurance).

Admk2istrative Arrangements

Options

Assuming that Federal investment in primary care centers will continue, several administrative arrangements could be pursued: Continue direct project grants with a significant Federal monitoring role Use State governments as funding channels and program monitors in all cases

Experiment with State and local government coordination of

funding and program monitoring

Criteriai for Decision

Criteria against which the options are evaluated are accountability, focusing on the neediest, sensitivity to underserved populations, compati- bility with regional planning,, and coordination with other services.

Accrnantal.Pility, Targeting and Sensitivity. The direct rei..donship possible a project grant nearly always enhances accountability and targeting. The history of maternity and infant care and children and youth projects, which were turned over to the States in 1974, suggests less accountability

after that elate partly because Federal involvement with monitoring and management dropped off sharply when responsibility could be passed to

the States (48, 49). Community health centers that have always been

funded by project grants exhibit a greater degree of focus on the poor and near poor and minorities than other DHHS programs. In addition, many

of the communities served by these programs had not received sufficient attention from State and local governments prior to establishment of Federal project grant programs; some such communities fear they would

fare badly if all funds were channeled through State or local governments

today. However, accountability, targeting, and sensitivity to underserved populations could be maintained in demonstration projects with selected Sate and local governments, assuming that some degree of community

involverr.ent is required.

Compatibility With State and Local Planning. Federal project grants have been criticized for lack of attention to overall planning and some

duplication in placement of centers. In addition, some have suggested that

.1 'I/ 465
State health departments, maternal and child health agencies, health

systems agencies, and local health departments play an increased role in

identifying gaps in access and planning for expansion of services. If this

situation occurs, Federal funding for primary care should be compatible

with these expanded roles.I2 State or local government management of all

primary care funds could provide the greatest opportunity for coordination. However, because State and local governments vary widely in their

capacity to manage a total system, movement now to universal channeling

of all funds to States may be less desirable. Retention of project grants in

all or some cases is not incompatible with good planning, especially if the

State or local agency perceives its role not only as a direct provider, but also as identifying gaps a d helping communities apply for Federal

primary care funding.

Coordination With Other Services. Federal project grants have also been

criticized for their categorical nature, lack of coordination with speci3.1

purpose programs (e.g., hypertension, family planning, and mental health)

and difficulty in establishing links to hospitals. However, no guarantee

exists all State and local governments would integrate services if the,-

were given authority over primary care and other program funding. F

example, most States have not moved to integrate the services fund,. through 314(d) of the Public Health Services Act, which originally

consolidated several discrete public health programs. Moreover, many

categorical programs serve a broader population base than primary care

programs and the special emphasis they provide may be useful.

Conclusions

The original reasons for circumventing State and local administration of

primary care funds, including insensitivity, lack of accountability, and

poor targeting are still valid in some areas and no longer valid in others.

Some State and local governments have led in creating networks and

integrating services. Thus, it may be appropriate to open the door to

administration of Federal primary care funds by certain State or local

governments on submission of a detailed plan. Actual funding of health

department delivery models previously mentioned would mean a significantly expanded role for both levels of government, while maintaining a

balance of accountability and coordination. through a basic project grant

approach.

HOW CAN WE ENSURE PROVISION OF

HEALTH-RELATED PREVENTIVE, PSI CHOSOCIAL, AND SUPPORT SERVICES

TO CHILDREN AND PREGNANT WOMEN?

The health- 1.ated preventive, psychosocial, and support services

previously lister. in this paper can be critical to children's development

"'This increase could be accomplished by careful coordination of any of the Federal funding options

under discussion.

466
and overall well-being and to women's physical and psychological adjustment during and after pregnancy. The following are some of the most serious problems that might be amenable to these health-related

services:

Child abuse and neglect continue to occur with alarming frequen- cy (714,000 cases in 1978 and 2,000 deaths in 1977 estimated by

the National Center for Child Abuse and Neglect). Among certain populations (e.g., Navajo Indians) environmental hazards are the leading cause of death (50). About 10 percent of all adolescent girls become pregnant each year, significantly increasing the likelihood of maternal-infant death and low-birth-weight babies. It is estimated that 75 percent of mental retardation can be

attributed to adverse environmental cons *tons during early

childhood.

As many as 90 percent of low-income chilel-en aged 1-5 are

receiving less than the recommended amount of iron and roughly

50 percent manifest deficiencies of vitamin C (51). The efficacy of health-related preventive, psychosocial, and support services in relation to health outcomes has not yet been completely

documented. However, evidence suggests that these services, when well linked to ongoing primary care, may enhance effectiveness and in some

cases substitute for more traditional services.

Prevention Services. Evaluations of well-child care programs for children under 2 years of age showed that although a typical pediatric physical evaluation had little impact on mortality and morbidity, programs

focusing on the total needs of the child (including parent education and home-based interventions) were more effective methods of ensuring

optimal child development (52). In addition, research has suggested that family planning programs, by reducing adolescent pregnancies through

counseling and prompt followup of contraceptive use are effective preventive interventions particularly because this population of women is at high risk for neonatal morbidity, mortality, and pregnancy complications (53).

Psychosocial Services. Evidence is beginning to demonstrate that in- creased use of psychosocial services in a comprehensive setting may=-

reduce the use of medical services (54). Moreover, research has suggested

that very early home visits by maternal-child health workers (beginning during pregnancy) may be the most effective method of improving mother-child interactions (55). Finally, social support may be particularly

important in preventing child abuse and neglect (56, 57).

Support Services. Social support services may play a critical role in

protecting an individual's health (58). In addition, programs to counteract certain environmental hazards through organized health settings are

effective in reducing morbidity and mortality (59, 60). Moreover, studies of WIC nutrition programs found them effective in reducing the fct-i death rate in high-risk populations (61).

467 473
NA, at Are the Barriers to Providing Health-Related Services?

Unfortunately, traditional primary care settings have not generally

provided health-related preventive, psychosocial, and support services for

children and pregnant women in adequate quantity or quality.

Less than 5 percent of the high-risk children in poor and urban areas and less than 40 percent of the children in more affluent areas are

receiving well-child care services consistent with the American Academy

of Pediatrics recommendations (62). Studies have shown that between 10 and 20 percent of individuals in the

community do not use traditional health services because they may be

culturally or geographically isolated. more concerned with other priorities

(e.g., housing), or may find services inaccessible or irrelevant for their

needs (63). Up to 60 percent of all encounters or mental health problems occur in

the general medical care system where physicians and other practitioners often are not trained to deal with these problems. And even when the

nonmcntal health practitioners recognize emotional and mental disorders,

inappropriate responses to these problems occur frequently (64).

Barriers to AB Health-Related Services

Traditional health providers may be reluctant to offer services that

represent a departure from their training and orientation and may distrust

health-related services (65). The primary care physician may also feel that

he or she can handle health-related problems without other support (66)

or may not be receptive to the use of mid-level professi3nals who are

trained to provide these services. Physicians may also be reluctant to

spend time on health-related services not reimbursed by public or private

insurance. Federal and State grant support for many health-related services is

provided on a narrow categorical basis (with the exception of the primary

care centers discussed earlier). Separate providers of mental health or

preventive services may be reluctant to coordinate fully or to relinquish

any control to primary care providers.

Barriers to Specific Services

Preventive Services. Individual primary care physicians, from whom most

families get their care. are not organized or trained to provide preventive

services such as counseling and education that should accompany

screening and lab tests. Lack of payment incentives contributes to this

problem. A notable exception is prenatal care, where counseling is

provided by many private physicians for an all-inclusive fee. Finally,

States and communities are resistant to family-planning and sex education

courses in schools (67).
Disease treatment has his.,orically received a higher priority than prevention by providers and potential users. High-risk groups in particular perceive preventive services either as unnecessary or as a low priority (68).

Psychosocial Services. Physicians are relucta lt to label patients as needing mental health services, and mental health services are handicapped by stigmas, particularly by racial and ethnic minorities who may be suspicious of them. On the other hand. psychosocial service programs are less inclined to focus on families and do not stress prevention or health promotion

programs. Instead, their focus is remedial treatment for the individual (69). Providers of psychosocial services are also often unable to perceive the relationship between the disease process and psychosocial factors and

are unable to coordinate with primary care providers (66). For example, community mental health centers have not been viable, consistent referral resources for patients in traditional health settings.

Support Services. Little financial support exists for tr. .sportation "id other important auxiliary programs that facilitate provision of hearth services (70). Moreover, health-related social service professionals for followup and case management are not incorporated into mc,..t settings where underserved children receive care (71).

What Are Some of the Ways in Which Health-Related Services Are Now Provided?

To overcome these barriers in providing health-related servic1/4.--s for families and pregnant women, many variables including the population

served (underserved, general population), the service area (rural, urban), and nature of the service must be taken into consideration. Perhaps the most important question is whether a particular set of health-related

services is incorporated into a primary care setting or provided separately, and, if provided separately, what links to an ongoing source of primary care exist.

Pre-ientive Services

Health-related preventive servicescounseling and educationare not traditionally provided in most primary care settings, especially in solo or small group practices. However, some private practitioners offer certain

preventive services (e.g., nutritior education) as part of pre- and postnatal care for infants and pregnant women. Organized settings, on the other hand, (HMO's and comprehensive primary care centers) are likely to provide many- more preventive services on a routine basis.

Several other programs also emphasize health-related preventive ser- vices either separately or in conjunction with certain elements of primary

care. These services include school health programs and family planning

projects.

7 5 469
Three programs that provide health-related preventive services follow.

HMO of Fuse! Sound"

The Puget Sound (Washington) HMO has a total of 300.000 enrollees.

By using epidemiologic data about its members, it has recently established

a special population-based services program that includes preventive and

well -child care as well as studies of what predisposes children to certain

illnesses and wha a re the best interventions to prevent or treat these

problems.

Program Operation and Personnel. One major innovative component of

the program is education and outreach that attempts to reach those at

high risk for problems such as child abuse or a second adolescent

pregnancy. During the prenatal period, the HMO holds health education

programs for parents that include information on what to expect during

pregnancy and a tour of the nursery and other facilities. Nurses also make

home health visits, providing assistance and guidance to parents on child

management, growth, and development. A second major innovation is scheduled visits during the postnatal

period. A third innovation is screening of infants who may be at high risk

for specific conditions according to epidemiologic data. Program staff

includes pediatricians, nurse practitioners, and other - -ofessionals.

Program Statistics. The program attributes financial savings of $100,000

per year to the scheduled visits and an increase in the number of children

receiving services relevant for them.

Cambridge School-Based Primary Care Program"

The Cambridge (Massachusetts) selool-based primary care program

serves about 6,000 of the 16,000 children in the area (about 67 percent of

whom are from low-income faMilies) and operates under the auspices of

the Department of Health, Hospitals, and Welfare, City of Cambridge.

The city is also the major source of funds for the program.

The program provides: preschool screening, evaluations, and assessments to identify learning

and emotional difficulties

physicals and laboratory exams

--immunizations and treatment of minor illnesses and injuries at the

schools referral to health centers and pediatricians from Cambridge City

Hospital for other primary care and specialty services community outreach, including followup home visits by nurses for

emergency room and hospital cases, consultation to nursery school

staffs, and outreach for problem cases

"Description from personal communication with Robert Thompson. M.D of the Puget Sound

program

14Description from personal communication with Philip Porter. M.D.. Di:rctor (72).

470 7t;
Program Operation and Personnel. The primary purpose of the schoolbased program is to identify children having physical and learning

difficulties in the classroom as early as possible. Nurses or nurse

practitioners visit each school at least one-half day a week, providing wellchild care, including screening and eye and ear examinations. They also

manage care for pediatric illness and injuries identified in the school (e.g.,

mild trauma and ear, nose, and throat ailments), provide counseling about

child rearing, and refer to health facilities where appropriate. Schools associated with neighborhood health centers use nurse practitioners who

are employees of the health center and use health center facilities for

laboratory tests and referral. Nor.health center affiliated schools use

traeitional school nurses. Both centers are supported by pediatricians

from Cambridge City Hospital.

Program Statistics. Immunizations for measles have increased from 55

percent in 1965 to 99 percent in 1975 for the children in the program; 98

percent of these children received their polio and diphtheria series. The program results also suggest that the neighborhood health center-school linkage may have also reduced inappropriate utilization of the pediatric

emergency ward at Cambridge Hospital.

St. Paul-Ramsey Adolescent Health Clinic's

The St. Paul-Ramsey (Minneapolis, Minnesota) Clinic is a high-schoolbased pregnancy prevention program operated as a satellite of a maternity

and infant care (M&I) project. Services offered to all senior high school students in two schools include 'VD testing and treatment, pregnancy

testing, pap smears, contraceptive information and counseling, and basic

prenatal and postnatal care.

Program Operation and Personnel. Each school has its own team

providing a wide range of health-related services, with health service

followup provided by the St. Paul-Ramsey project. A family planning

nurse practitioner is the team leader, responsible for health histories,

simple laboratory tests, educational sessions, and advising students on

contraception methods. A social worker sees all family planning patients

prior to the initial exam. An obstetriciangarnecoloiOst and pediatrician

provide health exams for pre- and postnatal care. A nutritionist provides screening and education for all new camily planning patients. A dental

hygienist provides oral hygiene screening. Finally, a day care director is in

charge of the day care centtr located within the school for children of

registered students.

Program Statistics. By the end of the third year of program operation

(1976), 50 percent of beth student bodies had visited the clinic at least

once and 92 percent of pregnant students had obtained prenatal services.

The school dropout rate: after delivery declined from 45 percent in 1973 to

15 Description from Family Planning Perspectives (53).

47r
10 percent in 1976 and the fertility rate declined from 60 per 1.000 to 46

er 1,000.

Psychosocial services

It has been estimated that over 60 percent of all mental health

encounters occur in the general medical system, where, all too often

training and referral linkages for such services are inadequate. The HMO's or comprehensive primary care centers are generally better prepared to provide mental health services because of the multidisciplin- ary nature of their staff, but they still may lack training and referral

linkages. Moreover, in 1975, such settings accounted for only 2 percent o: all clients with mental health problems seen in the health care sector (73). Conversely, most professionally trained mental health professionals see patients in mental health settings with links to specialty care but not to

primary health care. These professionals include private psychiatrists and

community mental health centers. Some programs (such as Head Start)

that concentrate on developmental services and include referral and links

to primary health care do exist. Three programs that provide psychosocial services with some degree of

integration with health =re follow.

Community Health Care Plan of Greater New Haven16

The Community Health Care Plan of Greater New Haven (Connecti- cut) is a federally citialified HMO serving a population of 25,000. It operates a healthmental health program funded by the National Institute of Mental Health, headed by a pediatrician, and focuses on children and

parents.

Program Operation and Personnel_ Primary care services to children and

families are delivered by teams that involve collaboration among

physicians, physicians' assistants or nurse practitioiers, medical assistants and nonmedical mental health clinicians. A pediatrician who encounters a child with an emotional problem may deal with it directly, or present the problem to a consulting child psychiatrist or to a mental health

professional. The pediatric social worker becomes clinically involved in one-third of the cases, frequently conducting interviews or therapy with both children and their parents. An additional Community Health Care Plan social worker from the Community Services and Health Education

unit may assist families with budgeting, finances, and housing, and may

intervene in child abuse and neglect cases.

Program Statistics_ In 1974 the health-mental health program identified

366 of a total of 4,094 patients under 19 as having emotional problems. Of

these, 294 were seen only by a pediatrician (instead of a psychiatrist), but received coordinated physical, mental health, and social support services_ The remainder received specialty mental health services.

16Deseription from Coleman ( 74).

472
The Bunker Hill Health Center-Mental Health Unit"

The Bunker Hill Health Center (Charleston, Massachusetts), provides comprehensive, family - centered health care services to a population of 17,000. The program is a satellite of Massachusetts General Hospital and offers medical, pediatric, mental health, social, dental, nutritional, and

other services. The program receives Federal primary care funding, with

the National Institute of Mental Health contributing to the mental health

component in a prototype "joint endtavor" linkage.

Program Operation and Personnel. Although the Bunker Hill Center has a

sizable mental health staff, it has linked its integrated program with the

local community mental health center, which provides additional staff for specialized mental health services. Active interaction occurs between the health and mental health staff

within the Bunker Hill Center and at the community mental health center. Multidisciplinary health care teams review family cases and make service and treatment referral recommendations.

Program Statistics. Almost 16 percent of the 9,233 patients seen at the Bunker Hill Center were identified as having me., health problems during 1975. Of these patients, a significant nun.:. 4--a-- of children and

parents received mental health services (17 percent 01 .aoys between ages 5

and 14, and 23 percent of women between 25 and 44 were seen in the Mental Health Services unit). The average cost of providing mental health

services was $345, well below the Massachusetts outpatient mental health

insurance requirement. 18

The Houston Parent-Child Development Center19

The primary goal of the Houston Parent-Child Development Center (Texas) is to assist low-income (predominantly Mexican-American)

families and improve the intellectual, social, and physical development of

their young children. The 2-year program focuses on developing child- rearing skills. Funding is provided by the Federal Office of Child Development and private foundations.

Program Operation anti Personnel. At 1 year of age the child is enrolled in

an in-home program that includes home visits by a specially trained

teacher who attempts to promote the child's sensory, perceptual, language, motor and social development through encouraging and teaching mother-child interaction. The family also participates with other parents

in four family workshops designed to improve communication and

decision

At 2 years of age the child and its mother participate in an in-center program to develop home management c1rillS for using personal and

"Description from the Institute of Medicine (75).

laThe State requires that private insurers must reimburse psychiatrists. primary care physicians. and

licensed psychologists for mental health services up to 5500 per patient annually-

"Descnp' 6On from Johnson (76).

473

4 79
community resources more effectively and to sensitize the mother to

important aspects of her child's development. Because the Parent-Child

Development Center population includes a majority of Mexican-Ameri- can families, the integration of the family's culture and language are

encouraged. The families who participate in the program are also reached

by community workers who assist them in using medical, nutritional,

educational, and welfare services. A full-time nurse at the center provides preventive and somt basic

primary care services. Other health services are provided through

itontractual arrangement; with local programs such as the San Jose Health

Clinic. Children rec.:fr.:re health assessments at I and 2 years of age and

other care as needed.

Program Statistics. Preliminary evaluation has shown some improvement in mental development when compared with a control group and has

demonstrated improvement in mother--child interaction, particularly

regarding the mother's display of affection for the child and in increased

verbalization.

Support Services

Support services are generally those that facilitate health services for persons with access problems, or seek to correct environmental and other

problems that contribute to lower health status. Thus, such services are

not often found in mainstream primary care, especially in solo or small

group practice. They are most often found in comprehensive primary care programs for the underserved. Medicaid's Early and Periodic Screening, Diagnosis and Treatment

(EPSDT) program is largely a method of financing a set of required

services that can be delivered through a number of models and settings.

However, a particular service requirement of EPSDT is outreach and case

management. which can be performed separately or integrated with either

screening or ongoing primary care. Thus, EPSDT (and some other public health screening efforts) are an additional source of support services.

Finally. local health departments may offer special water and sewage

treatment programs, but often these programs are isolated efforts

uncoordinated with other health programs. Two programs that provide health-related support services follow.

Beaufort-Jasper Comprttherisive Health Services"

The Beaufort-Jasper (South Carolina) program is a federally funded

primary care center serv:ng a largely rural area in the coastal area of the

State. It provides comprehensive primary care and community development services to 25,000 predominantly poor and near-poor residents. Its major objectives include improving the health and well-being of its

population. raising the economic level of the population and providing

adequate housing, water, and sanitation.

2°Desc?-ption from personal communication with Thomas Barnwell. Director.

474
Support services are particularly critical because of the high proportion of substandard housing (as of 1976, 16 percent of the housing units in Beaufort and 40 percent in Jasper lacked plumbing facilities), high-infant ---- -mortality, and the fact that some residents are island dwellers or live in

isolated areas without adequate transportation.

Program Operation and Personnel. The Beaufort-Jasper program is organized into major departments responsible for specific health and medical services: an ex,-,zutive department for a irninistration, operation, evaluation, and other izir.ernal activities; a community services division

encompassing environmental health, transportaton, economic develop- ment, and housing; a health care services department providing primary

care, social, nutrition, mental health, and other related services; and a

special projects department for water, community development, youth

and manpower programs (e.g.., garbage disposal, sewage, and mosquito

control). Program sites include a large central facility and four satellite cinics, employing about 250 full-time permanent staff organised into teams. The center also coordinates its programs with other health care settings

in the area, including referrals to specialist's and contracting with hospitals

in the area for inpatient care (center physicians follow their hospital patients), and arrangements with the local health department for prenatal care and home visits to discharged hospital patients.

Program Statistics. The Beaufort-J...,per program averages 50,000-60,000 medical encounters and 6,600 in-hospital encounters annually. The program has reduced the number of inpatient hospital days for the population served by almost 50 percent (from 2,000 in 1971 to 1,091 in

1975). One very tangible result can be seen in support services; the center has installed or updated 100 water systems for families who previously had

poor water systems supplies.

Michigan Screening and Referral .Progran221

The screening and referral programpart of befichigan's EPSDT

effortincorporates an innovative referral systeui that accompanies the

screening process for the State's 440,000 Medicaid eligible children. However, this program, lice most other State EPSDT efforts, operates prodomthantly on a nonintegrated model, depending on one set of providers for outreach and screening and another (often the private

sector) for the followup care.

Program Operation and Personnel. Michigan's Department of Public Health, through agreements with the Department of Social Services, has developed contracts with all local health departments to provide screening, training, supervision, information on findings to parents, and

referrals. The Department of Social Services determines eligibility and

performs outreach, transportation, and other ancillary services.

21Description from Kirk (77).

4Si

475
The Michigan program includes a State level EPSDT staff, consistng of

a public health nurse, an audiologist, a coordinator, an administrative analyst, and a physician, who provides training and support to local

teams. Referrals by the teams for followup care are mandatory if the child

fails a screening test and is not under care for the problem. A computer system also returns screening slirm-nsiry cards to local screening teams if

they have failed to make appropriate referrals.

Program Statistics. Local teams make about 85 percent ofthe referrals for

followup, with families arranging the remaining 15 percent directly. Most

frequent referrals include dental problems (27 percent), immunizations (26

percent), and physical inspection (20 percent). However, even with the

training and special effort, as many as 60 percent in some areas do not

keep appointments. This figure is significantly higher than in several other

States.

How Can We Ensure Provision of Health-Related Preventive, Psychosocial, and Support Services?

Issues and Options

Issues relevant to ensuring provision of health-related preventive, psychosocial, and support services to all children and pregnant women

include:Which programs suggest the most promise and what would be the

relative emphasis each type of program receives? What is the most appropriate source of financing for each group

of services and for providers within each group? What administrative arrangements are most likely to translate Federal funding into effective, efficient health-related services?

Effective Programs for Providing Health-Related Services

Options

A variety of programs providing health-related services has been

described, each attempting some degree of integration with primary health

care services. Although we are far from selecting specific models, some conclusions regarding attributes that contribute to effectiveness can be

drawn from a comparative evaluation.

Criteria For Evaluation

For each group of programs, criteria include ensuring access, degree of

integration with primary care, involvement and satisfaction of consumers,

and effectiveness and e.'ficiency.

Preventive Services

Access_ Only two considerations regarding access to health-related

preventive services exist. The first consideration, because users are often

476 4 0
reluctant to seek these services in isolation, is whether they are provided in

conjunction with some other service deemed more essential or in a setting where the population can be easily reached. Integration in an organized

setting or solo practice is highly desirable in this regard, as is the provision

of preventive services in a school setting. The second consideration is whether the health-related preventive

services are provided to the highest risk groups. Some programs are located in poor or underserved areas and ensure access by establishing outreach efforts within the communities. Th =e efforts include primary

care centers and n.Aany school-based health programs in low-income areas. For example, the Cambridge project serves a predominantly lower income population and attempts to meet needs of high-risk individuals by

concentrating outreach efforts in densely populated areas. In addition, services are available one evening a week for working parents. Special service programs such as family planning can also focus on high-risk

individuals through their location, such as the high-school-based St.. Paul- Ramsey adolescent pregnancy program. For providers serving more affluent populations, focusing on high-risk persons is desirable for some services, although other services should be provided to all children. The Puget Sound HMO achieved this through an

epidemiologic approach and home visits. The HMO data systems are often,_sophisticated enough to use demographic and health status

information to facilitate the provision of preventive services for those most at risk (7S).

Integration With or Links to Primary Care. The linkage of preventive

services to primary care is important because it increases utilization of the preventive services, a:A increases the effectiveness of health services (78). Prepaid HMO or comprehensive primary care settings are lively to be

effective in combining health-related preventive services with primary care because such services are related to the cost effectiveness and the

philosophy of the program. Moreover, such programs are more likely to use mid-level professionals, especially health educators, in cooperation with curative practitioners, and the family-oriented administrative structure helps ensure continuity. The incorporation of health-related preventive services into solo or

small group practice is more problematic. Areas of solo practice exist where this incorporation works fairly well (e.g.., prenatal care by obstetricians that includes counseling, or the use of nurses or nurse

practitioners in pediatricians' offices for parent education). However, the quantity and quality of these services in private practice is inadequate. Breslow and Somers (31) have proposed formal adherence to a "lifetime

health monitoring" schedule of preventive health services and healthrelated counseling and education. However, problems of actually integrating health-related services into a medical practicethe devotion of sufficient time and the delegation of tasks to those trained in providing

education and counselinghave not been addressed. One model that could be tried on a demonstration basis is the British national health

service program that pays for home visits and primary care nursing teams

in general medical practices (79). Public health nursing staff work directly

477

483
with individual general practitioners in providing health-related preventive services. School-based prevention programs can also be successful if, like the

Cambridge model, they provide direct coordination with primary care

providers and establish consultative relationships with physicians. There

too, nurse practitioners can play critical roles in providing services and

outreach. However, it is important to remember that not all school

programs employ nurses or nurse practitioners trained in providing health

education in conjunction with primary care, and not all have the links to

health centers and hospitals found in Cambridge. Similarly. linkages for special purpose prevention programs such as

family planning vary widely. For example, the Government Accounting

Office (67) found that family planning services are often poorly coordinated with primary care. Two characteristics of the St. Paul-Ramsey program

may make it especially attractive: use of the school site for outreach. and

linkages to an array of health care services. However, with services for

adolescents it is sometimes necessary to choose between effective outreach

(i.e.. a school or other site where teenagers will come freely) and primary

care integration, and if so, the outreach aspect may be more important.

Consumer Participation and Satisfaction. Where health-related preventive

services are integrated with organized primary care programs, a mechanism such as a community governing or advisory board usually exists for

consume: participation. Consumer participation should be studied more

closely, specifically in the health education and maintenance aspects of

the program. The lack of consumer involvement in solo and small group

practice may be a major problem and should also be the subject of

services research and demonstrations.

Consumer participation in school-based programs can be important to

success. For example, studies of a program in Hartford, Connecticut (80)

showed that students felt a greater sense of independence and control

regarding their choice to seek health care. Such involvement depends

heavily on the focus of program control and the attitude of administrators

toward user participation. Health providers may be more receptive to

consumer involvement than school officials, especially if they are linked to

community-based primary care programs, as in the Cambridge project.

Finally, consumer involvement in special purpose programs can mean a

vocal constituency for a particular service such as family planning, but it

is important to emphasize overall community needs as well. The St. PaulRamsey project did this by forming a community advisory committee.

Changes in the original location of the program showed sensitivity to the

clients' needs and caused a significant increase in the number of people

using the services, as well as a more positive attitude among students,

parents, and faculty.

Effectiveness. Nearly all of the preventive service models discussed as well

as evaluations of similar programs show positive results of utilization.

In the Puget Sound HMO prevention program, the number of inirwaniz'

dons and preventive services increased when compared with the period

before the program was instituted (81).

478 4S
Similarly, Federal and some health department primary care programs

increase immunizations and other preventive health services dramatically. Some preventive services require further research before conclusions can be drawn regarding their impact on health status; however, definite positive outcomes can be shown from others. For example, the Cambridge program showed positive results in emergency room visits, which declined 44 percent Results from the St. Paul-Ramsey adolescent pregnancy program showed a dramatic decrease in the number of adolescent

pregnancies (from 79 out of 1,000 to 35 out of 1,000 in 1 year), and

increased improvement in the use of contraceptives has been found in

other studies (82).

Program Cost and Efficiency. Evidence on costs is spotty and compari- sons of costs with and without health-related preventiwe services are rare. However, some evidence suggests that preventive service models are cost effective. The Puget Sound HMO attributes financial savings of about $100,000 per year to the reduction of the need for other clinical care by providing preventive services. This finding is consistent with other

research showing that HMO's reduce the need for curative services, thereby saving both money and staff time (60). The Cambridge program notes that its costs per encounter ($7.47) and

per year ($35.15) are competitive with private pediatric care for the area

(28, 72). Although data on the St Paul- Ramsey program and other school-based family planning efforts are inconclusive, the significant reduction in pregnancies suggests its cost effectiveness.

Psychosocial Services

Access. Comprehensive primary care programs emphasize outreach and

provide accessible, family-oriented primary care to the populations they

serve (83). Thus, joint endeavors to provide mental health services in these

settings offer substantial promise. One study of the Bunker Hill Health

Center (84) found that 75 percent of the children and adolescents in the

community were active users of their center, with the majority of patients coming from low-income families. Comparisons of an HMO and

independent plans for delivering mental health services to low-income enrollees found that twice as many enrollees in the HMO plan used

psychosocial services (85). Both primary care centers and HMO's

facilitate utilization of mental health services because consumers and

communities perceive them as medical settings, lessening the stigma

associated with mental illness (30). Head Start programs also focus on nonstigmatized services to a target population and outreach_ For example, the Houston program enhances

accessibility through ernphasfring cultural sensitivity and by conducting

the programs in homes and neighborhood facilities, with little or no cost

to the families_ Separate mental health programs may not offer these same advantages, even with a strong outreach component Stigma may be a problem, and

disadvantaged or minority populations may not relate well to what they

perceive as services for mental illness.

479 4 s 5
Integration With or Links to Primary and Specialty Care. Settings that

integrate health and mental health services facilitate coordination and

early problem identification, allowing staff to deal with a wide range of

childhood emotional conditions. Conversely, mental health settings see more serious acute or chronic problems (74). Because of their comprehensiveness, the HMO and primary care programs make effective use of multidisciplinary teams for psychosocial services. Such teams may include physicians, psychologists, nurses, and

social workers, and provide a system for planning and coordinating care. Because both primary care programs and HMO's already use nonmedical professionals, fewer problems may arise when attempting to introduce psychosocial services than in more traditional settings. However, integration of mental health services into primary care programs requires the cooperation of medical providers. For example, pediatricians may be more likely to determine that the child will outgrow many problems that a traditional mental health professional may treat

(74). Programs such as Head Start only partially integrate health and

psychosocial services and concentrate on developmental services rather

than a full range of mental health care. Links to primary care are usually

stronger than with a traditional mental health program because the goal is

to handle both the physical and mental factors that enhance a child's

development. For example, the Houston Head Start program emphasizes

social, emotional, and cognitive development and establishes linkages with primary care professionals and facilities. However, the impact and methods of integrating health care witii these psychosocial services have not been well documented (86). Another aspect of linkages that is important for psychosocial services in particular is the relationship with specialty mental health services for

referral and followup. The Bunker Hill Health Center's affiliation with a

community mental health center provides staff and guidance for secon- dary and tertiary services. This "joint endeavor" model uses staffhired by

the primary care center (often social workers, nurses, and indigenous workers) to provide most services and community mental health center- hired mental health personnel (usually doctoral level professionals) to

provide backup and more specialized services. Conversely, the Greater New Haven HMO refers very few of its

children to external mental health resources (only 8 child referrals in

1974). This lack may be due to the presence of more mental health

professionals on the HMO's own staff, although it also suggests that

referrals occur only as a last resort and that the HMO may not make use of exisiting programs that could provide supplemental mental health

services. Little information exists on linkages between the Houston Head Start

program and specialty sectors, although community workers and nurses

assist parents in locating appropriate service settings. On the other hand, separate mental health programs, particularly

community mental health centers, excel in links to secondary and tertiary mental health care, but do not always provide key entry level services.

480

4 S G
Consumer Participation and Satisfaction. Primary care programs such as

the Bunker Hill Health Center receive guidance from a consumer-majority governing board that attempts to ensure it meets the needs of the population in its catchment area (see earlier discussion of the Federal primary care model). Head Start programs are also largely community based, with parent advisory boards, and studies have found that they increase community

involvement (87) and parental satisfaction (88). For example, the role played by the Houston Head Start program's Parent Advisory Council in program guidance works to ensure cultural and individual sensitivity, as well as accessibility for the service population. The HMO programs also

attempt to involve consumers, but their efforts may be less consistent. The success of consumer participation in separate mental health

programs has been mixed. These programs often have a vocal community

constituency; however, adviscry boards do not always represent those most in need of services.

Effectiveness. Most of the models discussed showed evidence of effectiveness, although specific comparisons of integrated versus separate mental health programs have not been performed. In particular, research has

suggested that introducing a mental health program into a general health

care setting may reduce need for utilization of medical services as well as

reaching people needing assistance for psychosocial problems (54). In both the HMO and primary care centers previously discussed, a

significant number of children used the mental "wealth component Although no specific data exist on the clinical effectiveness of these psychosocial treatment programs, some evidence suggests that combining health and mental health services significantly reduces referral appoint- ment failures, increases feedback on referral results, increases informal contacts, and decreases stereotyping (89). In addition, general health programs, especially those that are community based, may be more

successful with the poor and with alcohol and drug abusers than

professionals in mental health settings who are comfortable with middle

class clients and more verbal therapies. Head Start programs have demonstrated improvement in children's

social development and positive changes in parental attitudes and self- confidence. However, little change in social adjustment, self-esteem, and

personal adjustment has been documented. Health components of Head Start demonstrated increases in medical exams, appropriate treatment, and better health in general (90). A

Government Accounting Office report (51) also cited significant improve- ment in socioenvironmental development of mothers and cognitive

language development of children.

Reasonable Cost and Efficiency. The Ranker Hill Health Center reports a

reasonable level of cost considering that the average per capital expenditure for mental health, $345, is below the $500 Massachusetts outpatient mental health insurance limit

481
However. an insignificant amount of generalizable data are available on

the costs of mental health services in HMO's, primary care centers, and

Head Start programs. More rigorous research is needed on the efficiency

and cost effectiveness of these programs and on whether reductions in

general health service use are attributable to separate mental health

program&

Support Services

Access. Because one goal of support services is to broaden access, ability

to reach and relate well to high-risk groups is especially important. The

record of Federal primary care centers, including the Beaufort-Jasper

Health Center has been well documented in this regard. However, EPSDT has not done well in reaching the target population.

Only 30 percent of eligible children have current screenings and 70

percent of those needing followup care obtain it. This situation is attributable to a number of factors, but particularly to a lack of intensive outreach, failure to use community-based groups, and absence of

adequate links to ongoing health care. Similarly, separate support services provided by health departments or social agencies are not always

combined with vigorous outreach and sensitivity to community problems,

although some notable exceptions exist.

Integration With Links to Primary Care. Major benefits can result from

integration of support services, particularly for the poor and underserved

population whose need for such services is greater than that of other

socioeconomic groups. For example, a General Accounting Office report (67) recommended that support services such as the WIC nutrition

supplement program would be better coordinated with Federal primary

care centers. However, some of these services have been within the

traditional domain of health departments (whether or not the health

department also provides primary care) and social agencies. Thus,

comprehensive health care programs that provide environmental, transportation, and other related services must decide to what extent they alone

should be operationally responsible forsuch activities, the degree to which

they can coordinate with other sources, and how to avoid duplication.

The Beaufort- Jasper. Health Center Las developed an extensive set of

support services that the staff feel are essential to providing effective

comprehensive health care. The program's ability to provide transportation for health services and housing and environmental assistance has

been particularly important in this predominantly poor, rural area because

the population has virtually no other organizations that coordinate

support se/ vices for them. The Beaufort-Jasper Health Center's medical

stalff advise environmental health personnel regarding which patients arc

most in need of home improvements (priority status criteria include

families with nizny children or the elderly). Social services staff serve as

patient advocates and provide assistance in locating and using appropriate

health-related programs (e.g., WIC, food stamps). Family health workers

are used to provide transportation and home visits.

s
The Beaufort-Jasper and other primary care health centers have been

able to integrate their own support services successfully. However, because the original philosophy of programs such as the Beaufort-Jasper program was to include a wide range of support services, significant

tensions may still exist when it coordinates with other agencies regarding precisely which services are needed, how they should be provided, and what attitudes are toward the target population. When the major focus of coordination is not a primary care center but a partial provider such as an EPSDT program, additional problems occur. In particular, the effect of outreach and transportation may be lost because subsequent links to ongoing care are absent. Relationships between health and social agencies and other sectors of the health care

establishment have not occurred in many EPSDT programs, resulting in

inadequate followup for treatment or further testing (91). Other studies

(92) have also reported that State EPSDT programs have had little positive effect on child health, that problems in assigning the task of outreach separately to States were found, and that the existence of a

comprehensive health center facilitated early implementation of EPSDT

programs. Although the Michigan EPSDT program was successful in

involving relevant social and health department resources (including the

cooperation of county health departments, social services, physicians, and other providers),it has continued to suffer from moderate to high "no- show" rates for screening, diagnosis, and referral (77). Greenberg (93) found that the Michigan public health nurses were not linking needy

children to continuing systems of care. Part of the problem is that physicians are reluctant to participate in Medicaid. However, the same

researchers also faulted the Michigan program for inadequate transfer of screening records to health care providers. The Carter Administration attempted to handle these problems through

the CHAP proposal, which would reimburse comm -nity grourn, including

comprehensive care providers for outreach, and establish advantageous

rates and methods of paying for all ambulatory services delivered by a

comprehensive care provider.

Consumer Participation and Satisfaction. As previously discussed, Federal primary care centers, including the Beaufort-Jasper Health Center, require consumer-governing boards. Although this form of community participation is generally very useful in integrating support services, some pitfalls exist. To the extent that programs expand to include environmental, transportation, housing, and other support services, divergent interests may encumber the policymaking processes (e.g., jobs for community

residents versus staffing to meet health care needs). Studies examining the EPSDT program, on the other hand, have found minimal parental participation as well as widespread misinformation (94). In addition, parents usually were not told that outreach, screening, and

diagnostic procedures are only part of total child health care. Support services provided separately by health and social agencies may

face similar problems. Although health departments are representatives of a cia_ elected government, they may lack a community or user focus.

4 b)

4E3
Effeedveness. The relationship of health improvements to support services

in comprehensive primary care centers has been partially documented,

that is, the primary care model in nearly all evaluations showing reduced

infant mortality, lower hospitalization, and less preventable disease

includes these support services.22 By definition, some support services such as outreach and transportation cannot improve health status unless they are well linked to actual

health care. Others, such as food supplements or environmental intervention may well succeed in the absence ofhealth services, although they may

be more effective when links to health cart are present.

Reasonable Cast and Efficiency. Unlike health or psychosocial services, very little has been done to establish reasonable cost parameters for

support services. What does seem true is that economies of scale exist for

these services and for small volume primary care providers it may be

useful to consider a consortium arrangement for some support services or

to tie into other agencies if the right linkages can be arranged. For example, multipurpose transportation networks serve health and other

programs in some communities successfully. The Department of Agriculture and the Farmers Home iministration have published guidelines for

establWiing these programs for the disadvantaged in rural areas. Another

example would be the provision of environmental intervention (e.g., water

and sewage improvements) by arrangements between a local health

department and a primary care center.

Conclusions

Delivery of health-related services requires further examination before

the most beneficial program models can be specified. However, preliminary assessments seem to suggest the following. Regarding health-related preventive services: Major advantages to integration with an organized, comprehensive source of primary care are found. Demonstrations from which we could learn abou.. the feasibility of incorporating these services in a solo or small grqtip

practice also are inZ.icated. If preventive services are combined with some element of

primary care (as in a school health program) and if the program

also has good links to the other components of ongoing care,

they can be provided effectively. Although separate preventive services can fragment care, trade- offs come with accessibility. For example, an adolescent

program that focuses on pregnancy prevention, in some cases

in conjunction with other health services important to that age

group, may be more successful than a comprehensive familyoriented program in attracting teenagers.

22Ses ember =femme: 36-4a
Regarding psychosocial services: Major advantages to integration with an organized, compre- hensive source of care such as a primary care center or an HMO also exist. These advantages include use of the nonstig- matized, community-based health sector as an entry point to

the mental health system. However, links to specialty mental health care are also needed. In this regard, the health-mental health linkage grants in the recently passed Mental Health Systems Act should be supported and expanded. Very little is known about the psychosocial components of solo or small group physician practice. More research is needed in

this area, although it is generally agreed that medial health

training of physicians needs improvement. Development programs such as Head Start can also b. extremely successful. However, the sometimes tenuous natur of the links to ongoing health care should be recognized, and greater collaboration between Head Start and primary care

centers encoutiod.

Many entry bstle4 psychosocial services will continue to be provided in separate mental health settings, with or without referral from the health sector. Mental health programs should

be encouraged to establish links with primary care providers in

their areas.

Regarding health-related support services needed primarily by

high-risk, =served, and underserved populations: Significant advantages also exist to integration with a compre- hensive care program, especially because outreach, transportation, and case management are ineffective unless the cycle of care is completed. ---Vv here political arrangements or economies of scale require

that a separate agency deliver support services, preference for funding should be given to those willing to work through or with primary care providers. Networks combining Federal primary care centers and health department support services may be especially promising.

Sources of Funding

Options

Financing health-related preventive, psychosocsal and support services may occur through Fee-for-service reimbursement

Reimbursement only to organized. settings A grant for service or a set of services The bulk of health-related preventive services in organized settings are paid for through a combination of reimbursement and grant services; that

is, counseling and education may be built into the rate snucture especially where directly associated with screening and treatment. However, extra grants often pay for special prevention programs. In solo or small group

491 485
physician practices. health-related preventive services are not formally

reimbursed, but may be considered part of a visit for screening or

treatment. Thus, no monetary incentive exists to encourage that time be

spent on such services, or that a trained midlevel professional should

provide them. Health-related preventive services provided by separate

programs are heavily grant supported because these programs often do

not have access to the health care reimbursement system.

Of the three health-related services, the psychosocial group is the only

one considered a treatment form. Although insurance coverage is far from

complete, it rivals coverage for basic primary care in some plans and

programs. Psychiatric services and developmental screening are covered

by Medicare (with limits); psychiatric services and developmental screening are covered by Medicaid (often with limits as well). Coverage of

mental health services in organized settings (usually delivered by midlevel

professionals) is less complete. Community mental health centers derive

about 30 percent of their income from third-party payments and primary

care centers may also be reimbursed for mental health services, but such

coverage is spotty. Finally. H MO's may include mental health services in

their rates.

Of the three groups, health-related support services are the least likely to

be covered by any form of insurance. This lack of coverage is primarily

because such servicesoutreach, transportation, food supplements., and

environmental interventionare on the outer edges of the spectrum of

health-related activities in relation to personal health care.

Criteria for Evaluation

Criteria for selecting financing options are whether effective provision

of the services is likely to result from the method of financing, whether the

method minimizes fraud and abuse, whether it encourages integration,

whether it is sensitive to varying needs of communities, or whether it

maximizes sources of nondiscretionary funding.

Preventive Services

Eff ective Provision. Ensuring that relevant preventive services are provided for children and pregnant women depends on key initial action, that is, to develop a set of services and structuring a series of periodic

interventions (e.g., Breslow and Somers "lifetime health monitoring

package" (31) or the Puget Sound HMO program). Each funding strategy,

however, will have its own effect on how well these preventive services arc

provided. General fee-for-service reimbursement would make preventive

services available to the greatest number ofpeople. However, it would also

focus scarce resources on solo and small group practices, where physicians

may not spend the necessary time on these important nonmedical

activities unless their time is valued as highly for education and counseling as it is for diagnosis and treatment If fees included education and

counseling by midlevel professionals, but were channeled through fee-for- service physicians, the incentive to use those who are best trained to

provide health-related preventive services would be still lacking.

486 4oda
Grants tor specific preventive services and personnel ensure the greatest

level of control regarding how the services are provided. These services are part of the grant funding for Federal primary care and special purpose programs. Grants could also be provided on an experimenta! basis to solo

and small group practices, similar to the British model that places a nurse practitioner or public health nurse in a physician's office. A middle course would be to limit insurance payment to organized

settings such as HMOs or primary care centers. These settings have builtin incentives to keep people well and contain costs; -:nost of them have peer review and use less expensive personnel; outreach can help ensure

appropriate periodicity. However, a larger number of organized settings would be included than with grant funding, and some problem might exist

in defining (or limiting) eligible settings for reimbursement purposes.

14Cmirnizing Fraud and Abuse. An issue closely related to effective provision is avoiding fraud and abuse. General fee-for-service reimburse- ment is least effective in controlling fraud and abuse. Because healthrelated preventive services need not be associated with "hard" diagnosis or treatment some providers might bill for and then not spend the

appropriate time on needed services. Reimbursement only to organized

settings may yield somewhat more control because of the standards that exist for such programs. Continuation of grants to organized settings and initiation of demon- stration grants to solo and small group practices for specific prevention

packages would provide the most control.

Encouraging integration. Fee-for-service reimbursement could encourage physicians to provide some health-related preventive services, but would not necessarily yield coordination with existing resources. A lack of coordination could exist if physicians perceive utilization of other

resources as reducing their incomes. Either reimbursement for organized settings or grants to such settings can be used to encourage integration. Similarly, grants could be used to promote the development of outside linkages by making certain affiliations a condition of funding. For =ample, Federal funding of school- based prevention programs could require affiliation agreements with

primary care centers or other facilities. Simi1 linkage agreements could

also be devised for group practices, particularly to encourage referral networks.

Sensitivity to Varying Needs of Communities. Funding preventive services

through insurance payments may detract from focusing on poorer communities and, if out-of-pocket expenses occur, it may discourage the use of preventive services that arc rtlr.dy not perceived as a high priority

by this population. This situation would also be true of reimbursement to organized settings unless additional variations depend on the community

served.

Grants allow the provision of services in settings serving high-risk

populations and the size of the grant can be adjusted according to the

ability of the target population to pay.

493 487
Maximizing Sources of 1Vondiscretionary Funding_ As mentioned in the

discussion of primary care services, grants are always subject to funding

cuts since they are discretionary. Judged on this criterion alone, healthrelated preventive services would be more secure if included in insurance

paymentsPsychosocial Services

Effective Provision. Reimbursement ofindividual physicians for their own

or a midlevel professional's mental health services is problematic in much

the same way as fee-for-service reimbursement for preventive counseling

and education. The nonpsychiatrist physician may not be trained to

provide the service, and the incentive to hire a better trained midlevel

professional is not present Conversely, too little is known about the

utilization and cost of reimbursing midlevel professionals. directly to adopt

this mode inunediateIy. Reimburser:-. to organized settings may be the most effective and

general method of providing entry level psychosocial care. Universal

coverage of :mental health services in these programs would allow the use

of nonphysician personnel, thereby increasing availability, efficiency, and

appropriateness of ,mre, while controlling the quality of services provided.

Grants are also effective in developing and evaluating models for

delivery of psychosocial services or in initiating services in particular

settings. In organized settings, financing could be maximized by providing

reimbursement for therapy costs, plus grants for startup, training, and

outreach.

Minimizing Fraud and Abuse. Regarding the related goal of avoiding

fraud and abuse, less difficulty may exist than with the other healthrelated services because psychosocial services are recognized therapies.

However, general reimbursement for mental health services on a fee-forservice basis may raise problems. For example, the State of Michigan

recently required Blue Cross insurers to cover mental health services

without distinguishing among providers. Unions and employers are complaining that they are now forced to pay for unorthodox and

unrecognized services such as sex therapy. Reimbursement only to organized settings would allow more control

and guidance in delivering psychosocial services because many of these

programs have ongoing monitoring mechanisms and have proven records

of utilizing a variety of personnel. Grants would provide the tightest

control.

Encouraging Integration. Fee-for-service reimbursement of physicians for

psychosocial services, as for preventive services, would encourage some

self-provision, but not good linkages, because some physicians dist/ ust

other health care system components(65). Grants could be used to promote development or expansion of

psychosocial and primary care linkages directly, in conjunction with

reimbursement of organized settings. Grants might also be used to study

linkages between private physicians and psychosocial service providers.
Sensitivity to Varying Needs of Communities. If we rely on fee-for-service

reimbursement for psychosocial services, less affluent communities are likely to remain underserved, and resources would focus on more advantaged areas. Organized setting reimbursement would help focus resources on community needs to the extent that the programs are in high-risk areas. However, focusing on the underserved and flexibility to provide deficit financing can best be achieved if grants are part of the financing package.

Maximizing Sources of Nondiscretionary Funding. Similar to other health-related services, reimbursement wo .11(1 be least vulnerable to

cutbacks and most vulnerable to grants.

Support Services

Effective Provision. Unlike the other health-related services, support services include outreach and focus on unserved and underserved populations. fee-for-service reimbursement to or through a physi- cian awy be the most appropriate mechanism. Sore discussion on including support services in a special reimburse- ment pact age for organized settings has taken place. However, the problem with defining eligible settings and ensuring monitoring, as

previously mentioned in the discussion of preventive services, would exist here also.

Grants to programs that serve needy populations could specify which

support services are to be provided (such as the federally funded primary

care centers.) This condition is particularly important because many

support services fall between the responsibilities of other agencies. Grants can also indicate the most appropriate professional and paraprofessional personnel for various services (e_g_, home health visitors performing

outreach).

Minimizing Fraud and Abuse. The issue of fraud and abuse is most problematic with general fee-for-service reirabunement for support services. For example, the prospect of solo physicians being paid on a feefor-service basis for outreach may not be conducive to good medical practice. Even if reimbursement were limited to organized settings, insufficient control over Medicaid-mill operations may exist. Grants appear safest and most likely to provide adequate control of fraud and

abuse.

Encouraging Integration and Linkages. Fee-for-service reimbursement for support services, as well as preventive and psychosocial services, would most likely encourage isolation of private practice physicians. For solo or small group practices, links to other agencies where support services could be provided most economically might be encouraged by experimental grants. Grants to comprehensive organized settings appear to offer the most potential for integration of support services. Reimbursement for support services to organized settings could also encourage overall

integration in a less direct way.

495 489
Sensitivity to Varying Needs ofCommunities.. Fee-for-service reimbursement is least appropriate for support services because of the lack of

targeting on the underserved. Reimbursement to organized settings is

limited only to the extent that the program is in an underserved area.

Grants provide the greatest degree oftargeting.

Maximizing Sources of NondiscretionaryFunding. Grant funding, as well

as other health-related services, is vulnerable to budgetary cutbacks.

However, these services are also the least likely to be provided through

insurance.

Conclusions

The preceding analysis of fee-for-service reimbursement suggests that

moving immediately to insurance financing for health-related preventive,

psychosocial, or support services would create serions problems in quality,

access, and efficiency. However, some important differences among the

three programs exist. Regarding health-related preventive services:

Solo or small group practices should not be paid on a fee-forservice basis because little assurance of adequate time or

delegation to appropriate personnel exists. Experimentation

with grants to such settings should be encouraged. Organized settings and special programs should continue to be

paid through supplemental grants in the near future. Administratively, the Federal Government is now moving toward an

identifiable portion of primary care center funds for a preventive and support services package. Also, some experimentation

with a special reimbursement package for preventive services

aimed at organize c_ --tttings with very careful monitoring should

be Regarding psychosocial services: Problems appear concerning reimbursing midlevel practitioners

on a fee-for-service basis. Current experience with this type of

reimbursement should be studied carefully.

Organized settingseither separate mental health programs or

comprehensive care providersshould be reimbursed for psychosocial s' vices via a cost related per visit rate or capitation

(including care by midlevel professionals). The Carter Administration has conducted a demonstration of Medicare costrelated reimbursement to organized freestanding mental health

clinics. This investigation should provide information on costs,

rates. and methods of payment Grant funding will still be

needed to ensure startup of targeting programs and training of

interdisciplinary teams. Regarding support services: Solo and small group practitioners should not be paid for these

services on a fee-for-service basis. However, some experimentation might be undertaken with linkage grants in underserved

490
areas, creating transportation or outreach networks for physi- cians to tap into. Organized settings should not presently be reimbursed for these

services. Grant funding in an identifiable package for Federal primary care programs should continue, as should grants for such services delivered by health departments and other agencies. Some experimentation should begin by offering a

support service grant to HMO's or other non-Federal organized

settings.

Administrative Mechanis" ms

Most of the administrative issues of relevance to provision or funding of health-related services are included in an earlier discussion of primary

care. The conclusions pointed to continued reliance on project grants, but with an open door to State and local governments who want to play a

larger role in planning, monitoring, and operating comprehensive primary

care programs. Regarding administrative arrangements for health-related

services, two additional points should be made: First, where suggestions for pilot demonstration programs and

experimentation are made, the Federal Government should play a

major role in funding and evaluation_ Second, where the goal is to establish links either between HMO's or Federal primary care centers, or between preventive and

support services provided by other agencies, the creation of networks by State or local health departments and Government units appears particularly promising.

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S75 885. 1979-

(92) Foltz. A. "EPS1DT: Lemons for National Health Insurance for Children." Paper presented at

American. Pubic Health Association Meeting moo. EL. November 16-20, 1975. (93) Greenberg 0. and R.. Lazdtin Federal Przwiten Implementation in Selected States: Afichisan

Pentstyl, value. and Ahdaszna_ National Center for Health Services Ransack Hyattsville. Md.. 1979.

(Of) Children's Defense Fund- EPSDT: Dom It Spell Health Cue for Poor Children. Washington. D.C.

1977.

BIBLIOGRAPHY

Baru: J., B. Burns, A. Jacobson. L Mach: R. Morrill, and E. Wilma. "Executive Summary: Coordinated Mental Health Care in Neighborhood Health Centers." In Mental Health Services in General Health

Core, Institute of Medicine, National Academy of Sciences. Washington. D.C. pp:. 145-148. 1979.

D.. G. Culley, D. Hachette:seer. M. Briscoe. and G. Somas. "Impact of a Rural Preventive Care

Outreach Program on. Children's Heelth." American Journal of Public Health 68: 471-476. 1978.

Fink. D. "Strategies for Systems Integration: Making Health Center and Hospital Linkages Work.- Paper

for National Associations ce-Community Health Centers Conference, Boston, June 1978.

Falcate, W. and N. (Dimming*. "Psychiatric Services and Medical Litilizatio' in a Prepaid Health Plan Setting" Medical Care 5: 2:5-35. 1967.

Foltz. A. and D. Brown. "State Response to Federal Policy: Children, EPSDT. and the Medicaid Muddle"' Medical Carr 13: 639`640,1975.

Miller. A... M. Moos. J. IC.otch. M. Brown, and M. Brainard. "Role and New Initiatives of Local Health

Departments for Delivery of Personal Health Services." Paper for National Symposium on the Role of

Stare and Local Governments in Relation to Personal Health Services, Chapel Hill. N.C., 1980.

Morehead. M. A. "Evaluating Quality of Medical Care in the Neighborhood Health Center Program of

the Office of Economic Opportunity?' Medical Cate 8: 118 -13]. Merch-April, 1970.

Schwartz. W. B., J. P. Newhouse. B. W. Bennett. and A. P. '91ilfiann.. "Do Board Centhed Specialists

Menne? Facts and Theory." Working Draft for RAND Corporation. Santa Monica, Cal., 1979.

Saar, E. and V_ Hoffiren_ "Polynomin' al Distrilastive Lag Models and Mental Health Service Planning."

Paper presented at the Statistic' s Section Annual Meeting American Public Health Association. Los Angeles. Ca. October 1978. Sparer. G. and A. Anderson. "Costs of Services at Neighborhood Health Centers-A Comparative

Analysis." New England Joan:sal of Medicine 286: 1241, 1972.

U.S. of Health. Education, and Welfare. National Center for Health Statistics. Health United

States. 1979 Pubboation Number (PHS) 80-1232, Washington, D.C.: U.S. Government Printing Office,

1980.

U.S- Department of Health. Education. and Welfare. Office of Child Health Affairs. School Health.

Washington. D.C.: U.S. Government Printing Office. 1976.

U.S. Department of Health and Human Services. Office of the Assistant Secretary for Planning and

Evaluation. Direr ctoey ofRaral Health Care Programs, 1979. Washington. D.G. 1980.

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U.S. Department of Health and Human Services. Office of the Assistant Secretary for Planning and

Eva luatioss- Review of 32 Studies Related so Physician Location in Underserved Areas. Washington. DG 1980.

U.S. Department of Health and Human Services, Public Health Service. Health Services Administration.

Bureau of Health Services. lArCogrnatiagl on Federal Pia nazy Care Programs_ Washington. D.C., 1980.

U.S. Department of Health and Human Services. Office of the Assistant Secretary for Planning and

Evaluation. Information on Com in Federal Primary Care CentiCrS and for Medicaid Recipients

Generally for 1979 Washington. D.C.

496
SECTION IV

FINANCING AND

ORGANIZATION OF

SERVICES
IMPROVING THE FINANCING OF

HEALTH CARE FOR

CHILDREN AND PREGNANT

WOMEN

by

STANLEY B. JONES

INTRODUCTION

Health care for children and pregnant women in the United States is paid for or financed in many ways. Of the $168 billion spent on personal health services in 1978 (1), approximately one-third was paid out-of- pocket for visits to doctors, health centers, or hospitals. The remainder of

the costs were paid by Federal, State and local government programs (38.7 percent in 1978 including Medicare), widely varying private insurance policies (27 percent in 1978), and charitable and industrial health

programs (1.3 percent in 1978). For children, far more is paid out-of- pocket (nearly 39 percent in fiscal 1977, the latest data available). This structure of payment for health care is the result of several decades of

increases in the numbers of holders of private health insurance sold by

hundreds of private companies to thousands of employers, trade unions, and individuals, and of the simultaneous development of numerous public Federal, State, and local programs. While most of these developments clearly reflect progress, unplanned and uncoordinated growth has left many children and pregnant women unable to afford desirable health

care. The nature of insurance coverage is such that most Americans will

probably go through periods when they or their children have no

insurance coverage or other source of payment for needed services, and it

is certain that many more will move continually from one program to

another or resort to public clinics that cost less or nothing. This rapid

growth has led to public and private programs that sometimes provide less

than ideal health we for children and pregnant won care that may

be both more costly and less effective in the long run. This paper focuses on financing and addresses the organization, appropriateness, and accessibility of care for pregnant women, children,

adolescents and handicapped children only when changes in financing might lead to improvements in such care. The merits of alternative

systems or structures of health care are discussed elsewhere in this volume

499

504
(see Yordy, Klerman (Title V), and Holohean); this paper addresses alternative structures only insofar as they relate to financing. Finally, the concluding suggested improvements applied to one ap- proach are meant to serve as a model for improvements in financing

health care and can be used as a starting point for the consideration of alternatives_

Many plans for "improving" the financing of health services have been proposed in recent years including national health insurance and other schemes. Some call for the greatly expanded role of government in the health insurance and health care field, and others call primarily for

improvement in the private sector. No compelling argument can be made

for one over the other, and this review instead focuses on current economic and political realities and the types of improvements that seem

feasible for the next 5 to 10 years.

THE FIVE BASIC EXISTING METHODS

OF FINANCING HEALTH CARE IN THE UNITED STATES

Although insurance and financing systems for health care are extremely

diverse, it is possible to distinguish five basic methods of financing health

care for pregnant women and children: private payment, Federal grant, Medicaid, public provider, and voluntary giving. Most proposals for new

or changed methods to insure or finance health care for children and

pregnant women, including national health insurance bills, fall into one of

these basic types. The five methods are distinguished by the relative roles of government and the private sector in each.

Approach 1: Private Payment

This approach to financing health care in the United States, which

includes payments by private individuals and insurance institutions, with

the government role limited to providing incentives and setting regulatory

limits, covers the majority of Americans and accounts for the majority of

the dollars spent on health care. Private insurance plans with widely

varying coverages, cost-sharing arrangements, and premiums covered

some 168 million Americans in 1977. These plans paid 27.2 percent of the amount spent in 1977 for "personal health services." Individuals paid

another 32.6 percent of the costs of these services out-of-pocket (2).1 Private health insurance, the key to this approach, has grown rapidly

since World War H. when employers were greatly restricted in increasing cash wages but were permitted to augment their compensation of

lIt is important to note that while this private payment approach pays the largest share of personal

health care costs of the five approaches. and indeed is perhaps the dominant financial influence on health

care. it pays little of the costs of public health and other health-related services generally provided by

agencies of government and voluntary agencies. These agencies are discussed under Approach 4 below.

500
employees without restriction if it took the form of paying for health

insurance plans as a fringe benefit. In addition, Internal Revenue Code provisions that allow the employer to claim health insurance premiums as a business expense and that do not count the premiums as taxable income

to the employee have made health insurance a sought-after fringe benefit by labor unions_ Given these incentives, private health insurance rose

from paying for 12.2 percent of the costs to consumers for personal health

services in 1950 to paying 45_5 percent of these costs and covering 78

percent of the population in 1977. Today, most individuals purchase some type of health insurance directly from private insurers based on what they want and can afford_

Most people select a group insurance plan or membership in a health

management organization (HMO) offered and paid for in whole or in part by their employer. Many who have no employer, or whose employer offers

no group plan, purchase individual insurance coverage. The comprehensi- veness of coverage, the premium, and other features of this insurance are

left largely to the individual, the employers, the unions that negotiate with

employers, and the insurer. As a result, thousands of different private

insurance plans exist with widely varying provisions. Some cover the costs of nearly all personal health services while others pay only limited

amounts for hospital care, leaving individuals to pay most of their health

care costs out -of- pocket. In addition, since employers and individuals are free not to purchase

insurance if they so choose, millions of individuals and their families are not covered by health insurance because of costs or other factors.

The government role in this "private payment approach" to financing

care is largely limited to (1) State regulation of insurers, (2) Federal and State regulation of providers of health care, and (3) Federal tax incentives

to encourage the purchase of insurance, and Federal grants and

regulations that encourage innovation through HMO's.

State Insurance Regulation

Government interference in the private insurance industry is very

limited by the McCarron-Ferguson Act, under which insurance regulation

is left to State governments_ State regulation of insurance companies deals almost exclusively with issues regarding their solvency. With some

exceptions, the legislation does not affect the content or coverages of

insurance policies, nor do these laws require that insurance be sold to any or all individuals at any particular rate. Some States have enacted

legislation that permits more extensive regulation of insurers, but do not actively implement it. The major exception has been growing State regulation of Blue Cross

and Blue Shield plans_ Because most Blue Cross and Blue Shield plans are nonprofit corporations chartered on a tax-exempt basis by State govern- ments, States frequently require them to make health insurance widely

available at approved rates to groups and individuals who otherwise could

not afford insurance_ In some States the "Blues" are required to enroll

anyone who requests health insurance ("open enrollment") under policies and at rates approved by the State insurance commissioner. These rates

501
frequently are subsidized and are lower than the true cost of the insurance

for individuals covered- The subsidy is obtained by charging premiums for group coverages that are somewhat higher than the group's costs. The

theory is that Blue Cross and Blue Shield plans, because they save money

through tax exemptions, are able to accumulate these extra dollars for

subsidiz' ing individual plans into their group rates and still be competitive with the rates of other insurers.

Some State governments have also enacted laws that require all insurers

in the State to offer insurance to all individuals who seek it, including high-risk groups, by participating in "pool" arrangements whereby the

insurance companies share proportionately in any financial losses from

the insurance.

Finally, some State governments, such as those of Massachusetts, Rhode Island, Hawaii, and Michigan, have enacted laws that require

either employers to include specific health insurance coverages in any

insurance plan they purchase, or insurers to include, or at least offer, specific coverages in any insurance plan they sell in the State. These

requirements tend to focus on specific benefits such as alcohol and drug

abuse treatment, mental health care, or prosthetic devices. However, no State, with the possible exception of Hawaii, goes so far as to specify

eompralenirv'e insurance coverages or ranges of coverages an insurer must sell, or to define acceptable cost-sharing or other insurance practices.

Federal Tax fives for Instwance

The Federal Government does not regulate health insurance except by

requiring employers to offer their employees a choice between health maintenance organizations and more traditional insurance forms. The HMO Act requires that the HMO choice be available where feasible and provides Federal grants for startup costs of such organizations. By providing funds for some of the planning, development, and early

operating losses of these organizations, the law seeks to encourage their development and competition with other insurance forms and thereby to

encourage less costly health insurance and health care. The Federal Government's most important activity regarding insurance

is the provision of tax incentives. As mentioned earlier, employer payments of premiums can be considered a business expense and

employer-paid premiums are not counted as taxal,le income for employ- ees. In addition, individuals are permitted for tux purposes to deduct the cost of insurance premiums they pay themselves as a medical expense. Health insurance is a very attractive fringe benefit for employees, and

labor unions have bargained aggressively for increasingly comprehensive

employer-paid coverage.

Federal and State Regulation of Providers and Resource Development

During recent years Federal and State governments have developed a

number of programs of a regulatory nature is efforts to make health care

more evenly accessible, and to restrain increases in health care costs.

502
Examples of these activities include State rate-setting commissions and

certificate-of-need programs, and health planning activities resulting from

the 1974 National Health Planning Act and the 1979 amendments. In

addition, Federal and State governments establish standards and administrative processes related to private insurer relationships with hospitals. Examples are the institutional utilization review programs required by Medicare and Medicaid regulations, and the Professional Standards Review Organization with which many private insurers contract for review

of their claims.

These government programs frequently have the support and participation of private insurers, who see such regulatory activities as a means of regulating access to and costs of health servicesa difficult task to

accomplish through the insuring mechanism. Government regulatory efforts of this sort are still relatively new. Initially government relied on self-regulation and voluntary compliance by hospitals and other institutional providers under privately established

standards. Strong cost control measures were not believed to be needed. As new programs have become established and health care costs have

continued to rise, institutions have increasingly been required to comply with regulations as a condition of reimbursement by Medicare and Medicaid, ana even as a condition for collecting from private individuals and private insurers. The proposed Federal programs for hospital cost containment clearly reflect a growing sense in government of the need for more rigorous cost-containment programs. However, such government regulatory programs are as controversial as

they are recent. The hospital cost containment legislation is among the most politically controversial bills before Congress, and regulatory

programs across the country are being widely challenged (often in the

courts) by providers and consumers alike. At the moment the only clear policy consensus seems to be that at least some outside regulatory limits are needed on provider rates and expansion of services, and public forums are necessary for the review of needed services as compared to those proposed by providers.

Approach 2: The Federal Grant System

This approach involves financing care through payments by private

individuals and insurance institutions, with government grant subsidies

for startup and operation of services to underserved and low-income populations. Many Americans live in areas of the country where services are not available, or need certain types of services that are not available and that seem unlikely to become available under the private payment approach. Inner city neighborhoods and rural communities, for example, frequently

lack adequate numbers of family physicians or other sources of primary

care, and the care that is available in public hospitals is often inadequate. This situation has been growing worse as more and more physicians and other providers set up practice in suburban areas or near major medical

5

503
centers. The private payment approach does little to change this trend.

Private insurers tend to have the fewest enrollees in these areas, and

private payments generally are sparser in these areas and less likely to

gen..rite the capital needed for expanding services or for offering needed

special services. The. private payment approach can clearly result in better insurance and consequently more health services for residents of areas of higher employment and affluence while those in areas of lower employment lose

services because of inability of providers to collect fees. Grams to finance services have been used to augment private payments by providing funds to develop needed health care resources and to

demonstrate better ways of providing health care, under the assumption

that once started, government funds will cease and the private payment system will support ongoing costs and improved practices. Grants have also been used to pay ongoing costs of health care services for some populations when private payment seemed unlikely. Existing grant programs seem to include elements of both. A number of Federal programs, often with State counterparts, grant funds to health care providers to startup and operate facilities and provide health care primarily for underserved populations. One of the first major programs--of-thiskind,-the_Hill-Burton program, provided funds for the construction of hospitals in unsierserved areas. The intent of the later O.E.O. Neighborhood Health Centers (now the DHHS Community Health Centers) program was to demonstrate how adequate health care could be provided for the people in the areas and to fund at least the

startup and early operating costs of these centers. The demonstration

components of the Maternal and Child Health program, authorized by Titles V and XX of the Social Security Act, seek to create resources to

fs (wide adequate health care to children and pregnant women who

otherwise might not get it. Migrant Centers have the same objective for

the migrant population. The Mental Health Centers program provides access to ambulatory mental health services to the entire population

because of the extreme shortage of these services and has funded the

startup and the first 8 years of operation.

The Government Role In the Federal Grant Approach

The Federal Government legislates and regulates basic requirements

that must be met for receiving grant funds to start health centers. The

range of services and the type of area that is eligible are also defined. In

some programs, the State government has the final decision, within the

Federal guidelines, as to which projects are funded. The Federal Government and, in some cases, State governments appropriate funds yearly for health center programs. The breadth of services offered by such centers and the number of centers funded

depend directly on these appropriations. In this way health care is offered by public, i.e., State and local government, or private health care providers who apply for State or Federal Government grant funds to start up and offer services. The design

and operation of the centers, as well as the decision about the need for

504 503
them, is up to local government and the community As long as they

operate within Federal and State guidelines. Services offered by these programs are usually focused on primary care and often include many services that are especially important for lowincome populations, as well as services that are desirable for everyone but often not available. They include preventive, mental health and social services, and even nutrition services, counseling, health education, and

consultations with schools and courts. Tight Federal and State grant budgets in recent years, however, have led to narrower ranges of services

than were originally conceived of for these programs, and individual centers vary considerably in what they offer. Many centers do not include hospital facilities, and many do not pay for the hospital care their patients

use.

These programs usually offer their services to all children and pregnant women in their area who request them, and collect fees scaled to the patient's ability to pay. These scaled fees may vary from center to center. If the patient has private insurance or Medicaid or Medicare the center may attempt to collect from those sources. Federal and State grant funds are intended to pay for only what cannot be collected, but they often

constitute a major portion of the funding for the centers because so many patients in these centers have little insurance, low incomes, and no Medicaid eligibility. If hospitalization is required for a center patient, the care may be provided by a center physician but the hospital costs may be charged to the patient to be paid in whatever way possible. This means hospital care is frequently provided at a public or municipal hospital. Tight Federal and State grant budgets have put pressure on some centers

to focus their attention on Medicaid recipients and/or higher income

individuals from whom higher percentages of fees can be collected.

Approach 3: Medicaid

Another approach to financing health care is to have the Government finance and purchase the health care for a specific population. In enacting Title XIX (Medicaid) of the Social Security Act, the Federal Government identified certain people who would be eligible to have their health care paid for directly by the Federal Government, and State governments if the State chose to establish a program. Those eligible are primarily lowincome individuals who are aged, disabled, or blind; and poor single parents and their dependent children who have difficulty in paying for care because they are unable to find or afford adequate private health

insurance and unable to pay for their health care out-of-pocket The private financing of care for very low-income Americans is difficult, because if they work at all, they usually have only part-time or seasonal employment or work for small employers in very low paying jobs. As a result they seldom have an opportunity to join group health

insurance plans where the employer pays all or part of the premium, and

they cannot afford the high cost of premiums for individual insurance. Medicaid, in fiscal 1977, covered about 21.6 million people, including

an estimated 11 million children. The program excludes, however, millions of children whose families are "poor" by the definition of the national

SOS
"poverty level," because of family status, institutionalization, or other

factors.

One aspect of the Medicaid program, the Early and Periodic Screening. Diagnosis and Treatment (EPSDT) program, is especially important to

children. The program offers health screening, diagnosis, and treatment care to all Medicaid children. However, due to financial and other

limitations EPSDT had provided only 3 million children with up-to-date

assessments in fiscal 1977.

The Government Role in Medicaid

Unlike Medicare, which is administered by the Federal Government, Medicaid is run by the States within Federal guidelines, and the programs

vary considerably from State to State in terms of eligibility, comprehen- siveness of services and other factors.

The program is financed by a combination of Federal and State or local

government funds. The Federal contribution ranges from 50 percent to 83

percent, depending on the State's per capita income. The Medicaid program, through annual Federal and State appropriations, pays for the cost of care to low-income Americans only if they are

eligible for federally assisted "welfare payments"; are disabled, blind, or

or iine-iiiembeit-or 'single -parent- families;. Further, State governments set their own eligibility standards. Income standards range from

$5,000 or more for a family of four in New York and California to less

than $2,500 in North Carolina and Texas.

In addition, States have options to include certain other groups under

this program. They also have the option to cover the so-called medically needy (those with incomes up to one-third higher than the levels for

eligibility for cash assistance) through "spend-down" provisions of the

Medicaid program. Under such provisions, medical expenses equivalent to

the difference between actual income and the eligibility level for cash

assistance qualifies the individual for Medicaid. "Spend-down" amounts

to a type of caaistrophic health insurance for the near-poor. A State Medicaid program must cover certain health care services, while others are optionaL States, moreover, can limit the amount, duration, and scope of any services they pay for. Each State's Medicaid program must provide early and periodic screening, diagnosis, and

treatment (EPSDT) services for all eligible persons under age 21 or be

subject to Federal penalties. Any limitations in coverage under a State Medicaid program apply to this group, but certain services that are optional for adults must be included in the EPSDT program (specifically

eyeglasses, hearing aids and dental care). Many State Medicaid programs contract with private insurers to serve as "intermediaries" to perform basic insurance functions, within guidelines established by the Federal and State governments, such as paying providers for services, reviewing claims and so on. The insurers do not

collect premiums. In this system, the Medicaid programs reimburse the

insurers for claims and administrative costs. The actual health services for Medicaid beneficiaries are provided by

the same providers who also provide care for private payment State

506 51
Medicaid programs establish fees for physicians and other professional providers of services but are required to reimburse hospitals on a basis comparable to that used in the Federal Medicare program. Physicians who take Medicaid patients, however, must accept Medicaid's payments as payment in full. Because these payments are substantially lower than

customary charges, in many States large numbers of physicians decline to

take Medicaid patients. Hospitals and other institutional providers who are paid on a cost- reimbursement basis likewise cannot charge the patient additional amounts for covered services. Such a large percentage of hospital income

is derived from Medicaid and Medicare that the Federal Government has

considerable leverage in hospital practices and has begun rigorous negotiations with these providers to require increasingly detailed justification for their cost increases, utilization of services, and any proposed

expansions in services.

Approach 4: The Public Provider System

The public provider system includes public financing and providing of

care through government staff and facilities for selected services and

populations. Certain "public health" services are provided to the entire

population through this method. Infectious disease surveillance, foreign

quarantine, and mass immunizations are conducted by a combination of

Federal Government and State health agencies. State and county

governments with varying types of help from the Federal Government,

conduct programs of education in maternity and child care, programs in

alcoholism and drug abuse, water supplies and other health related

activities that affect children and pregnant women. They also implement

school breakfast and lunch programs, which subsidiie costs of school

meals for all children and provide free meals to low-income families.

Further, while they are seldom classified as health activities in government organization charts, activities of the courts and/or penal systems regarding juvenile offenders; child and wife abuse or neglect, and child custody; State and county programs of protective services; special education

programs; programs of mental health consultation and education to

schools and courts; and housing also bear directly on the health of

children and t women.

State and fgnagnovernments also frequently offer a range of special "public health" services to low-income individuals and particularly to lowincome children and pregnant women. Individualized services of nurses, social workers, and others are provided to pregnant women, parents, and

children who are identified by other health care providers, schools, or courts, or by the health departments themselves, as needing such services. State and local governments also identify low-income individuals and

families who are eligible for housing subsidy programs and for the Supplemental Food Program for Women, Infants and Children (WIC)

(aimed directly at the nutritional needs of children and pregnant women). Nurses and social workers sometimes are based in health centers

supported by Federal, State or county grant funds (such as those

507

512
described in the Federal grant system above), or in public hospitals and

clinics operated directly by the State or local government. State and local government hospitals and clinics also provide a wide

range of health services, primarily for low-income individuals and

families. Such facilities are seldom restricted to serving low-income

individuals and families only. In fact they are sometimes the primary

source of some health services, such as emergency services, for the entire population in their area. However, they, like the centers funded by Federal grants in Approach 2, are the health care providers of last resort for anyone who has no private health insurance, no eligibility for

Medicare or Medicaid, and limited or no ability to pay for health care out- of-pocket. Indeed, these facilities are often the primary source of care in

many areas for Medicaid recipients and lower income individuals and

families (even for some with private insurance coverage) because they

serve neighborhoods or areas where other providers are scarce or absent or because Medicaid or Medicare payment levels are not accepted by

other providers. These State and local providers generally collect all they

can from Medicaid, private insurance, and individuals but are funded

largely from State and local government budgets. Their range of services

reflects directly the extent of investment State and local governments are willing to make in them. These State and local activities are far more

extensive than the Federal grant activities described in Approach 2 and

indeed are the recipients of many of those grants. In some cases, such as the Denver Hospital Corporation, a municipal hospital has drawn together a comprehensive network of hospitals, neighborhood health centers, and satellite stations, through which State and local funds, State and Federal Medicaid funds, and Federal grant funds of various kinds are coordinated and integrated. They may also be

the organizational base for nurses and social workers who provide

individualized neighborhood public health services and facilitate other health-related services for families, such as food -stamp and WIC eligibility. In such instances, the State and local public provider system is filling in

the gaps left by categorical Federal grant programs, by Medicaid, and by private payments. The success of the Denver system is attributed to the

financial support given it by State and local governments. Finally, public providers are the source of care for a number of special populations. State and local governments operate facilities and provide

health care for orphans, the mentally retarded, the mentally disturbed, alcoholics and drug abusers, prisoners, and others. Health care for children and pregnant women in these settings is almost exclusively paid

for by the State. Similarly, native Americans, veterans, merchant seamen, active military personnel, and in some cases their dependents, are offered

care directly by the Federal Government.

Approach 5: Voluntary Giving

Charitable and voluntary actions support and complement the other

health care systems in several important ways. First, many social services

508 3
are offered especially to low-income individuals, including adoption services, foster care, and family planning. Second, many private providers of care offer significant amounts of subsidized services to low-income individuals. Private hospitals "write off" as bad debts the costs of care to patients who do not pay their bills and the private payment system in part reimburses them. In some cases though, this "write-ofr' occurs only after professional bill collectors have been unable to collect, and action hardly seems charitable. In other hospitals collection practices are less stringent. In some (largely private voluntary hospitals and clinics), low-income patients are accepted for care at a reduced cost or no cost and the real costs are recovered through charitable donations, "bad debt" subsidies, and other subsidies available to the institution. Many hospitals and clinics operate maternity clinics on such a basis. In fact, some services of this sort are required of hospitals that have received Federal funds for hospital expansion under the Hill-Burton

program. Likewise, many physicians and other professional providers offer reduced rates or free care to low-income patients. It is difficult to measure accurately the magnitude of services offered by private providers or paid for by charitable contributions, or the number of people servs:I. Because charitable and voluntary services clearly are limited and operate for the most part outside government influences, they do not serve as a base for expanded services to children and pregnant women and will not be discussed further except by reference. However, such services are clearly a factor in the operation of current and future financing systems.

WAYS TO IMPROVE THE FIVE FINANCING METHODS TO FACILITATE THE BEST HEALTH CARE FOR CHILDREN AND PREGNANT WOMEN

Ideally health care for children and pregnant women should have the following characteristics: Comprehensiveness: All the services most appropriate for good health should be available.

Universal accessibility: All children and pregnant women should have access to these services.

Appropriate provision and utilization: The services should be offered, paid for, and used in ways most appropriate for good health.

The method of financing can either discourage or facilitate health care of this kind.

Comprehensive Care

Comprehensive care for children and pregnant women includes many

health car-=_ services that are covered by private insurance for only some enrollees, or are not covered at all.

509
Some individuals and employers purchase vet comprehensive coverage

with an insurer or health maintenance o. an that pays for most

medical expenses so that individuals have y ,y little out-of-pocket

when they or their children receive me;.i: cs. Others purchase

narrower coverage that pays, for example, all or pail. of hospital-based

care but leaves doctor office visits and otitzr medical services to be paid

out-of-pocket by the individual. Most insurance is designed to cover highcost hospital inpatient care and to avoid the additional premiums required

to cover the primary care in doctors' offices, outpatient clinics, and health

centers that is vitally important for children and pregnant women.

Because of the deductibles and coinsurance that are part of this type of

insurance, most policies pay very little for child health because even

routine acute care for a child in the doctor's office seldom exceeds the

deductible. With regard to services for pregnant women, insurance is

available that specifically excludes coverage for maternity care, and

insurers are free to limit the benefits they cover in almost any way they

choose and to further limit their risks by excluding "preexisting"

conditions or placing limits on how much they will pay for some services,

including maternity care. In addition, insurance offers little coverage for services that are not

related to an acute illness, a health condition, or injury, or that are not

delivered by, or under the direction of, a physician, or that have a high

social or educational (as opposed to medical) orientation. Consequently,

private health insurance seldom covers preventive care, mental health

care, rehabilitative care, social services, eyeglasses, hearing aids, prescription drugs, and prosthetic devices; and pays nothing toward the costs of

health education, social services, nutrition, public health and other

activities carried out by State and local government. Also, insurance

seldom pays for the services of nonphysician providers of care unless they

are employed by a hospital or other institutional provider.

As a result of these various insuring practices, many Americans pay

most of their bills out-of-pocket for such critical services for children and

pregnant women as the following: Well-child and prenatal care, health screening and assessments,

immunizations, family planning, infertility services, sterilization,

abortion and contraceptives Routine acute care for children

Counseling and guidance, school health programs, social services,

home health, homemaker, transportation, day care, and adoption

services

Finally, of course, the private payment system contributes nothing to a

variety of public health and community services, such as clean water and

sanitation, education, housing, and food supplements.

The reasons for these gaps in insurance coverage arc related to the

characteristics of the private insurance system. Insurance coverage, after

all. is marketed to employers. employees, and individuals based on what

coverage they want and how high a premium they are willing to pay.

Historically, employers, employees, and individuals began purchasing

insurance for unexpected high-cost medical needs requiring hospital care.

They have only recently begun to purchase insurance for doctors office

510
care and for many of the lower cost and routine expenses required, for example, in well-child care. Few people are willing to buy insurance

policies that cover homemaker services, day care, social services, and other services that seem peripheral to the high-cost medical care most

feared by enrollees, and which may not be "health care" at all. Second, insurers and purchasers of insurance tend not to insure services

that seem elective in nature and apt to be used more by one person than another for reasons of personal preference. This contributes to the

exclusion of a variety of services ranging from oral contraceptives to maternity care and mental health care (particularly psychoanalysis). Third, insurers hesitate to cover services when they can't confidently predict how widely they will be used, what their total costs to the insurer will be, and how high the premium should be to cover them. Services that are hard for insurers to define exactly and that can be overutilized or

"abl-.8,ed" by providers are also put in this category. Preventive services, counseling and guidance, eyeglasses, hearing aids, services by nonphysi - clan providers, and other services are often therefore excluded or limited

in arbitrary ways. These services are especially problematic in a competitive insurance market where premiums must be kept down and where

there is little room for error.

Ways To Improve Comprehensiveness of Private Insurance

The first step toward improving comprehensiveness of insurance benefits for children and pregnant women is to define standard

services that are the most appropriate in terms of the health of the patient. An advisory council on child health in the Office of the Secretary of DHHS might perform this role if the council included experts in health care and insurance (for children and pregnant women) as well as representatives of the major purchasers of health care and insurance.

It is clear that these services for children and pregnant women will

include many that are not likely to be sought out and purchased in the

current insurance market, and not likely to be offered by private insurers. Since this definition of services is opposed to marketing and insuring

systems, it should be established by government or an influential agency. A second, and more difacult step would be to convince or require

the purchasers of insurance to pay the higher premiums required by these comprehensive benefits, including the costs of some

socially important "elective" services that some enrollees know (or believe) they will personally never use. Three approaches are

possible. First, employers, employees, and individuals could be

required by government to purchase standard health insurance

coverages and include critical services to children and pregnant women that otherwise might be omitted by employer or employee

choice. So-called "mandated" national health insurance proposals

include such a requirement Second, the health insurers of the Nation could be required to include the critically needed services

for children and pregnant women in any policy they sell. Third, government could offer employers, employees, and individuals

51 511
some incentive for voluntarily buying insurance that covers these

services, through increased income tax deductions or credits to

offset the cost of the portion of their total premium attributable to

these services. The major issue to be considered in selecting any of the above

approaches, of course, is the extent to which a mandatory rather than a

voluntary approach should be taken with regard to employers and

emloyees and also with individuals who must purchase nongroup

coverage. The mandatory approach would result in more children and

pregnant women being covered for comprehensive services. It is possible,

however, to increase the number Who would purchase comprehensive

coverage on a voluntary basis if the premiums for individuals and small

groups were subsidized (as suggested below under universal coverage).

Further changes are required for those health services that insurers find

difficult to cover even when purchasers must pay or are willing to pay for

them. If private insurers were required to cover too many services whose

costs they could not predict, for example, they would be hesitant to quote

premiums and would possibly decline to sell the coverage in question.

Ways must be found, for example, to define more specifically reimbursable counseling services and services provided by nonphysicians.

A start might be made by requiring insurers to reimburse for one extended counseling session per pregnancy or to include such a

session as part of specified periodic health assessments with

additional sessions payable when certain diseases or conditions

are identified, or when approved through a peer review process.

The ultimate problem with insuring these services is cost, and part

of the solution is to define the servicesspecifically enough so their

costs can be predicted. If government were to require that such

defined services be insured, they might also establish a reinsurance

mechanism to protect insurers against the possibility that government definitions are not enforceable.

The private payment approach might also contribute to paying for

services now provided by public health and community agencies.

In fact, some of these services are provided on an individual basis

with a provider rendering a specific service to a specific patient.

Such services might be covered privately given better definition of

the service and possible protection through reinsurance as

mentioned above. An example is childhood immunizations, which

might be covered as part of a regular health assessment office visit.

Many of these public health and community services, however, seem

not reimbursable on an individual basis, and fundamentally outside the

realm of private insurance as now conceived.

As a means of financing even these services within the private

payment system it would be possible to require insurers to

contribute some portion of their premiums to government for use

in schools or other government or voluntary agencies to support these activities. A premium tax or even a specific premium

surcharge based on the number of children and pregnant women

in a State or area, and other factors might be levied and

earmarked for use by State or Federal Government for grants or

512
for payment of public providers to perform these services. It might be argued that there is a cost trade -off between such public health

services and the costs of services that are insured (such as between

fluoridation and costs of dental services) and that insurers could

justifiably be required to contribute to the costs of the services.

Ways To Improve the Cempreiresnlveness of Medicaid, Government Grants, mid Pre& Providers

The constraint imposed on private insurance benefits by the employer's and employee's unwillingness to pay larger premiums is parallel to the

legislator's unwillingness to appropriate money and raise taxes for health

care for low-income individuals. In addition, defining services covered by

insurance and predicting their costs are also problems for Medicaid. Lace private insurance, Medicaid contributes little to financing public health and community services. The Medicaid coverage might be made . insistent with the

coverages required or encouraged under private insurance and

also made to include additional services needed by children and pregnant women. Medicaid would also have to pay for these

services at rates comparable to those paid by private insurers to

ensure they are in fact provided to patients. The case could be made that Medicaid, like private insurers, should pay a surcharge of some type to support public health and

community services that cannot be reimbursed effectively through

'insurance.

Medicaid might also be changed to require that all States establish

"spend-down" programs for children and pregnant omen in

order to ensure that the near-poor have at least some protection

against catastrophic costs. States might be given the option and

encouraged with increased Federal matching funds to substitute

for this "spend-down" program a private insurance premium

subsidy plan. This would give individuals below certain incomes a

voucher equivalent to the worth of their "spend-down," to help

pay the premiums for certified private insurance plans. This would encourage individuals to buy insurance that covers primary care

rather than relying solely on the last-resort catastrophic protection ofthe "spend-down" program. These changes in Medicaid would require increased Federal and/or State funding. Some relief might be given Medicaid if services to patients with both Medicaid coverage and private insurance coverage (with

improvensents as suggested above) are billed to the private insurance first; that is if private coverage were "primary." The added costs to the Medicaid program might either be assumed by the Federal Government or divided between the Federal and State governments by a matching

formula. As with private insurance, the law might require States to expand Medicaid coverages as a condition of any Federal support for their Medicaid program, or it might make it a voluntary action on the part of

the State government with an increased rate of Federal matching funds to

serve as an incentive.

513
For grantees and public providers who operate basically under budgets set by government grants or appropriations, problems of defining

coverages in order to determine premiums simply become management problems of identifying those people who can be hired and the services

that can be provided within the budget. Tight public budgets in recent years have caused some of these programs to be as reticent about providing some services as the insurers, even though such programs were established and continue to o.Ter their special populations a variety of services seldom conceived of in insurance policies. More comprehensive private health insurance through one of the mechanisms suggested above would offer some support to public

providers and health centers because they would be able to collect private

insurance payments for more of their services to children and pregnant women who have private insurance coverage. In addition, if Medicaid were required to cover these same services and to offer a fairer

reimbursement for services to children and pregnant women, these

providers would be helped financially. However, many of the providers' patients have no private insurance and no Medicaid eligibility, and

financing comprehensive services through these providers can only be

accomplished if more of their patients are covered by private insurance, Medicaid, or the increase of Federal grants and/or public appropriations.

Universal Access: Insurance Coverage for All

One way of ensuring financial access to needed care for all children and pregnant women is to ensure that all have insurance coverage for comprehensive care at all points in their lives. The existing private payment system leaves many children and pregnant women without coverage. Medicaid, government grant programs, and

public provider programs are aimed primarily at these populations who

are unable to obtain adequate insurance or pay for their health care out- of-pocket. These public programs do not reach all who need them, however. Both private and public systems could be improved in order to ensure more nearly universal insurance coverage for children and

pregnant women. According to the 1976 Household Interview Survey by the National Center for Health Statistics, some 22.8 million Americans had no private health insurance and no Medicaid coverage. A number of factors

contribute to this lack of coverage.

Insurance coverage is most universal among employees of large firms or organizations who offer group health insurance that is far less costly to the

individual than individually purchased insurance. The premium is lower

for such plans, and usually the employer pays all or part of the premium

on behalf of the employee. Smaller employers, however, especially those

whose workers use more health care, will have to pay higher premiums for

the same insurance and are more likely to offer no insurance or very

limited coverage and to require that the employee pay more of the

premiums. Some plans allow employees to "opt out" of such coverage, and most plans allow the emptvbeds spouse and children to be covered or t

514
not, according to the wishes of the employee. Where the employee pays a higher portion of the premium, he or she may elect "self only" coverage and exclude his or bet spouse and children or may elect to have no

coverage at all in order to save money. Individuals who are part-time or seasonal employees, self-employed. unemployed, or employed where no group plan is offered must purchase

individual policies from insurers unless they qualify for Medicare. Medicaid or another government program. Many such individuals find

the costs of the premiums too high, and purchase no insurance at all. Some individuals who have a history of high use of health care may be

refused insurance by insurers or offered the most limited coverage, or coverage exhading services most used in the past. Some insurers, primarily the Blue Cross and Blue Shield plans, offer at least minimal health insurance protection to any individual or group who

applies, frequently at a standard premium for all who enroll. This

standard premium is subsidized from a portion of the premium charged to

large favorable-risk employer groups. This practice, which provides

insurance to many individuals and high-risk groups who otherwise could

not obtain or afford coverage is a historic practice of some insurers and is

increasingly being required of Blue Cross and Blue Shield insurers by State governments. However, it remains the case, even with this practice. that insurance coverage for individually insured persons and small and

high-risk groups is narrower and has had higher premiums than that for

larger groups, and that a higher proportion of persons in this category has no health insurance or only very limited insurance protection. On the

average, the lower income individuals and their families who are less able

to afford individual insurance, are also those less likely to be covered by

employer group insurance where the cost to the individual is lower.

Ways To Improve the Universality of Private Insurance Coverage

Insurers might be required by government to offer insurance for standard services for children and pregnant women at a reason- able premium to all individuals or groups who request it. This would require insurers to subsidize in some way their rates for

individuals and small groups. As indicated earlier, the current competition

among private insurers for group enrollees makes it risky for them to add

enough cost to the premiums of their large group subscribers to subsidize adequately the lower premiums that would make good coverage more

affordable to individuals and small groups. However. if all insurers were required to subsidize comparably and all were required to enroll

individuals and small groups regardless of risk, the problems of competitive disadvantage would be minimized. The subsidy itself could be accomplished in a number of ways. All

insurers could be required to collect a government-tevied surcharge on all large-group businesses and use these surcharge dollars to offer a "below- cost" pcemium to individuals and small groups. The surcharge could be

set to keep the premium down to 100 to 130 percent of a large-group

premium. Alternatively, government could go even further, and require

insurance cornpom'es to offer "community-rated" plans to all employers,

520 515
employees and individuals in a State or area. A "community rate" is the

same for all people in the community area. Both of these approaches would eliminate or ease the much higher costs of insurance for individuals

and small groups than for large groups and thereby make coverage more

affordable for many The subsidy concept co..1144 be taken still further to reduce the cost of

insurance premiums for low-income Americans to below that paid by

higher income Americans. The new labor union national health insurance

proposal includes the requirement that employers pay and insurers collect

"wage- related premiums" such that the employer, employee, and individual pay the insurer a percentage of individual income rather than a flat

premium_ Under this approach, low-income Americans would pay lower premiums subsidized by the higher premiums of higher income Americans_ Those who are eligible or welfare, Aid to Families with Dependent Children, Supplemental Security Income, or current Medicaid would have

their private insurance premiums paid directly by State and Federal

Government_ Such extensive subsidies would make private insurance

more affordable to low-income Americans and would make coverage of children and pregnant women more nearly universal. Federal and State Government could make the private payment system

cover more women and children by the following methods, in addition to

these subsidized coverages: Providing tax incentives; requiring all employers, employees, and

individuals to purchase certified insurance plans for children and

pregnant women; or requiring all insurers to include the standard

services in all policies sold. This is the same set of alternatives

suggested above for making private insurance coverages more

comprehensive. Operating State government insurance placement offices to help

small groups and individuals select and enroll in private insurance

plans or seek eligibility for Medicaid.. Requiring employers and individuals to include their spouses and

all their children in their own insurance plan. Requiring that group insurance coverage be extended to former

employees and/or their families for 90 days after termination of

employment, death, or divorce. Requiring insurers to allow their enrollees to convert their group health insurance to individual coverage when they leave an

employer group.

How Medicaid, Public Providers and Grantees Can Improve

Universality of Coverage

As long as health insurance is in any way contingent on employment,

on actions by the individual to seek out and purchase coverage, or on

eligibility for Medicaid based on income, people will fall into the cracks.

An approach that requires employers, employees, and individuals to

purchase insurance, and/or requires insurers to sell coverage that complies with standards such as those above will result in more universal and

continuous coverage for middle-income Americans, but many, and

516
especially lower income individuals, will still not be able to afford

coverage. To provide for these individuals, Medicaid might be expanded in ways

similar to those proposed in the Child Health Assurance Program (CHAP)

bY: Removing all categorical eligibility requirements for children and

pregnant women Setting n...tionally uniform income eligibility standards at a percentage of the poverty level Removing all assets requirements for eligibility The public providers and grantees should continue to provide services

to the children and pregnant women who, despite improvements in the private payment systems and Medicaid, are still without insurance

covemsfe even if only for a short period. To the extent that more children

and ravgnant women are insured under Medicaid and the private system, the burden on public providers, grantees, and voluntary providers would be lessened, and the costs of more of their services might be collectable

from these public and private insurers. One approach to stabilizing the financing of these providers would be to require all insurers in the State or area to collect a

government-levied surcharge that the State would contribute to

public providers, grantees, and voluntary providers, because many of their uninsured patients are individuals who are caught in the gaps inevitable in an employer-group-based private insurance

system_

Universal Access: Affordable Care for All

Affordable Out-of-Pocket Costs

Private payment for finanng care at present results in children and

pregnant women paying out-of-pocket the costs of some desirable services. Many of these out-of-pocket costs would disappear if the services covered were made more comprehensive and insurance coverage were made more universal through the approaches suggested-above. Some major causes of out-of-pocket costs would remain, however, and the desirability of covering these c.4:,6ts for various services should be considered_ The major causes of out-of-pocket costs, given comprehensive and

universal coverages are (1) "cost-sharing" provisions of public and private

insurance programs, and (2) insurance payment practices that leave the patient liable for provider charges above or below set amounts or schedules.

Cost-sharing is the major source of out-of-pocket costs under compre- hensive insurance programs. Deductibles and/or coinsurance are used

almost universally in private insurance plans, and vary greatly in size from

plan to plan_ Some, for example, require the individual to pay a deductible of a fixed amount, such as $150, before the insurance pays anything, and

then to pay a portion (or "coinsurance'', such as 25 percent, of all the

costs over the deductible in a year.

517 522
The deductible mechanism seems especially likely to discourage some of the types of health services most used and needed by pregnant women

and children, becavAe it does not pay for services until the deductible

amount is reached._ This in fact means that most well-child care, and even

roiLdne acute care in the doctor's office, the cost of which seldom exceeds

the usual $100-$ 150 deductible, is always paid out-of-pocket_ It can also

mean that the pregnant woman must pay the total cost of her first prenatal visits and only get insurance help later on. In both cases, the regular and

early services that are most desirable for good health care are financed less well by the insurance. Insurance plans also include a variety of other practices that result in higher out-of-pocket payments by patients. Private insurance programs often establish a specific amount they will pay for each specific service of physicians and other professional providers, and sometimes for hospital and other institutional services as well, and some insurers limit payment to

"usual and customary" charges for professional providers. In addition, insurance and Medicaid programs often place limits on the

total amount they will pay for some types of services (e.g., mental health

services) or on the number of certain services for which they will pay (e.g., one pair of glasses every two years). They may also establish claims

reviews or "peer review" procedures to determine whether specific services provided to a patient were necessary or appropriate. In cases where these

limits are exceeded or the review determines the services were not needed, the insurer or Medicaid may refuse to pay. These practices can leave the privately insured patient to pay out-of-pocket the portion of the physician

or hospital charges not met by the insurance payment for covered services.

In some cases these amounts can be very large. These variations and limitations on insurance payments mean that the

amount individuals must pay out-of-pocket for services varies enormously; consequently the financial disincentive varies for various services and different individuals. Ironically, lower income individuals end up paying more out-of-pocket on the average, and preventive services and primary

care, generally high-priority concerns for pregnant women and children,

are paid for mostly out-of-pocket_

If "affordability" is a necessary objective for making health care

accessible to children and pregnant women, then these payment practices

can constitute serious obstacles.

Ways to Improve Affordability of Out-of-Pocket Costs Under Private

Health Insurance

It would be costly in several respects to eliminate cost-sharing practices such as deductibles and coinsurance from insurance. First, because most Americans each year never use their full deductible amount, most of the

relatively small bills they pay for services are never processed by insurers. If insurers had to process and pay all or part of all of these small claims

from all Americans, the administrative burden (and cost) would be greatly

increased. Second, the premium would have to be greatly increased to

cover these payments. Indeed it could as much as double the premium.

518
A number of steps could be taken, however, to make the cost more

affordable.

Insurers might be required to soften the discouraging effect of the deductible mechanism at the time care is sought by using the type of "health credit card" arrangements included in several recent national health insurance proposals. These would require insurers

to process and pay the provider directly for all health claims for covered services using the patient's card and then bill the patient for any coinsurance or other liability on his part. This would both

lessen the costs the patient would face and delay his payment (perhaps through 30-, 60-, or 90-day credit terms) until after the

services are sought and rendered. Alternatively, insurers could be required to cover some designated

services such as preventive services generally, and prenatal and well-child care specifically, without deductibles or without both

deductibles and coinsurance.

Other insuring practices that increase out-of-pocket costs could also be

changed by requiring that insurers: Set no limits on the number or cost of types of services offered to children and pregnant women except those specified in the

defined standard services as suggested above. Negotiate acceptable fee schedules or other payment arrange- ments with providers for their services to children and pregnant women and provide their enrollees with lists of the providers who

agree to these fees. This parallels the "participating provider"

agreements negotiated by Blue Cross and Blue Shield plans. These negotiated agreements could also include a mutually agreeable process for the provider and insurer in which services later judged

unnecessary would not be billed to the patient. Alternatively, insurers and providers could be required to negoti- ate such participating provider agreements to cover only those

specific services to children and pregnant women for which any

out-of-pocket payment by the patient unduly discourages access, such as preventive services generally and prenatal and well-child

care in particular.

Ways Medicaid and Public Providers Can Improve the Affordability of Care

Many State Medicaid programs, like private insurers, also set very low

fees for physicians and set limits on the amount, duration, and scope of services covered as a way of saving Federal and State revenues. Because

providers must accept the Medicaid payment as payment in full if they

treat a Medicaid-eligible person, many physicians simply refuse to take Medicaid patients. There is also evidence that some providers accept the

lower fee but offer skimpier services in return. In addition, the practice of many public and private voluntary providers of billing uninsured patients a variable fee based on their income is really

also a form of cost-sharing, though more equitable perhaps than a flat

519
deductible or coinsurance unrelated to income_ This practice raises a more

troublesome issue, however. These varying fee schedules for people whose

incomes make them ineligible for Medicaid are in fact a means of

liberalizing health care for some people and providing an alternative to

buying private health insurance. In some cases, such as facilities supported

by the Maternal and Child Health Service, the Federal program seems to

intend this liberalization for specific groups such as mothers and children.

In other cases, programs seem to have been intended more to start up or

demonstrate a system of health care, rather than to subsidize care on an

ongoing basis. This seems to be, in fact, an area of unresolved public

policy. Perhaps the chronic underfuncling of these grant programs (which

arc small enough in the Federal budget to be overlooked) and of public

providers reflects this ambiguity. There are, of course, always exceptions

that prove the rule. In some cases, such as Denver, where the public

provider is respected for efficiency and quality, the State and local

government seems to have chosen purposely to improve the financial

accessibility as well as the geographic accessibility of services to all

citizens through the public provider system. In dealing with these issues in Medicaid and among public providers

and grantees, Medicaid might be changed in several ways: Require that no limits be set on amount, duration, and scope of

services that are offered to children and pregnant women, except

those specified in the defined standard services.

Require Medicaid, like private insurers, to negotiate with providers fee schedules or other payment arrangements that the

providers will accept as payment in full for their services to

children and pregnant women and to provide Medicaid eligibles

with lists of these providers. Alternatively, require that such "participating provider" agreements extend only to those services for which any out-of-pocket

payment unduly limits access_ These changes would make Medicaid operate in a manner more nearly

parallel to the private insurance system and give less reason for providers

to discriminate against Medicaid patients. Given the expanded private insurance coverages and expanded Medicaid coverage suggested above, one might argue that ideally there should

be less need for grant programs to subsidize ongoing services, and for

appropriations for the services of public providers. Since there will always

be individuals without coverage and since grant programs and public

providers are critical for resource development and in other roles (see

below), the following changes might be considered: Grantees, public providers, and voluntary programs should charge

the full costs for their services to all patients in order to encourage

individuals to enroll in certified private insurance programs and

subsidize costs of care only in cases where no insurance could be

purchased, for example, among illegal aliens.

Alternatively, if Medicaid and private insurance are not extensive

enough to justify the above stringency, voluntary programs and public providers should be required or encouraged to use

520
graduated fee scales that impose no financial barrier to preventive

and other needed services.

"Affordable" to Society

Given the rate of increase in health care costs in the United States and

the growing concern of employers, labor unions, and government about these costs, it is important to consider how the various approaches to

health care financing might affect the affordability of health care and

health insurance for the institutions that purchase most of it. Indeed, if health insurance premiums or government expenditures rise to the point where programs are cut back, the result will be reduced insurance

coverage and less affordable care for children and pregnant women. The rising costs of health care and insurance are leading to a number of new and experimental approaches by private insurers in attempts to keep

costs down. These range from programs of utilization and claims review to various innovative insurance plans.. For example, in one widely discussed program by the SAFECO Insurance Co, the insurer contracts with a

limited number of primary care physicians who provide basic care to all enrollees in the pb and in turn refer patients to any specialist that a particular health problem may require. The primary care physicians

receive an end-of-year bonus from the insurance plan that decreases as more specialist and hospital services are used. Under this arrangement the enrollee agrees to a limited choice of doctors, the doctors are given an

incentive to limit the use of higher cost specialist and hospital services, and a lower premium can be offered to the enrollee_ The most widespread variation on standp .rd health insurance today is

the health maintenance organization. In these organizations the incomes of doctors are greatly affected by whether the costs of health care of the

enrollees are higher or lower than the premiums collected. Their incomes can be increased if fewer high-cost health services, such as hospital care,

arc used.

HMO enrollees are widely acknowledged to use fewer high-cost health

services, especially hospital days. As a result, HMO's are able to offer broader insurance coverage than usual at the same premium. The HMO

concept of prepaid capitation to providers for enrolled individuals seems

especially applicable to health care for children and pregnant women. The government might identify "packages" of routine services appropriate for children and pregnant women and negotiate payment amounts for these packages. Insurers might then be

required to pay a capitation fee covering these services to the provider of choice for each of its enrolled children or pregnant women and require reports to ensure services are provided. The pending CHAP proposal includes such a concept for Medicaid. By organizing their services most efficiently the primary care provider may lower costs, and the need to maintain his enrollment of capitated patients would help ensure quality care_ Reinsurance arrangements might be established to protect providers from

"adverse selection" in this type of enrollment-capitation approach.

5 '2 6

521
In the face of rising costs, it is necessary to use the most cost-effective means of providing care, or at a minimum to be sure that the financing

arrangements do not encourage less cost-effective care. For example, it may be that some routine screening immunizations can be provided at

lower cost, and with nearly equal effectiveness, on a mass basis through

schools or other community institutions than on an individual basis in the doctor's or dentist's office. It would be unfortunate to include these

services in insurance plans in ways that encourage children and pregnant women to obtain these services in doctor's offices instead of through mass programs (or in addition to mass programs). Services that could be best provided on a public health basis might be identified by government and financed by matching govern- ment revenues and the private insurance surcharge revenues mentioned earlier, based on numbers of children and pregnant women insured. The State might use public providers or other agencies, for example, to operate a school-based system of preventive health services for children with referral arrangements

to other providers. The potential for ensuring universal access to

these services through such an approach is compelling in addition

to its cost effectiveness. The regionnlition of services also has the potential for

improving cost effectiveness of services to children and pregnant women_ Pediatric and maternity care are very amenable to

regionalization ranging from multiple sites for selected routine

screening and preventive services at one level to primary acute care and health assessment sites at another level, to general

inpatient facilities and to a limited number of highly specialized

inpatient facilities. A school-based public provider system as

suggested above may well be most appropriate for the first level; the enrollment-capitation approach through HMO's, individual physicians, centers, or clinics described above may well be most appropriate for the second; end a classic fee-for-service reim- bursement approach best for institutional care. State government and health planning agencies might be required

to establish regional plans that offer these levels of services, and Insurers might be required to reimburse institutions only for services appropriate to their level of care as opposed to less

specialized levels of care. They might further be required to reflect the level of care (and attendant overhead costs) in the reimburse- ment rates they negotiate with the providers. This could help solve difficult issues of fair reimbursement for both ambulatory and

inpatient services for children and pregnant women by focusing

on the specific costs of these patients separate from the rest of the

population, and distinguishing between levels of care for them. Any discussion of the long-term affordability of health

insurance and health care for children and pregnant women could of course cover the entire range of cost containment, procompetitive, and other existing or proposed incentive and regulatory

programs in the national health insurance debate. Such a

discussion is beyond the focus of this paper. Moreover, implemen522

5 4--)
tation of many elements of these programs is best done for the entire population and not just children and pregnant women

because they might preclude providers from caring for children

and pregnant women in the interest of populations where there is

less regulation, less red tape, or more customary ways of operating.

How Medicaid, Federal Grantees and Public Providers Can Improve

the Affordability of Care

The Medicaid program includes all the problems and opportunities of private insurers with regard to affordable services. Medicaid regulations might well be changed to require State programs to operate in ways parallel to those proposed above for private insurers, including: Paying providers on a capitation basis for defined packages of services to children and pregnant women who are enrolling with

them, as suggested in CHAP. Paying a surcharge based on the number of women and children

enrol:ed to help finance "public health" services. Reimbursing only for services and/or providers approved in a State regionn1;7_ntion plan, and at rates appropriate to the level of services (and attendant overhead costs) approved in the plan. Federal grant programs under this approach might well be freed

from paying for ongoing care, and required to invest more of their resources in demonstrating more cost-effective care or new

patterns of organization and delivery consistent with regionalization.

Finally, using the surcharge and matching funds described above plus other State and Federal funds already used for these purposes, States might use public providers or contracts with private provider organizations (including maternal and child health centers, hospitals, or foundations for medical care) as mentioned above, to: Provide or coordinate services on a "public health" basis to all children and pregnant women in their area or school district using

the schools, Head Start centers, or other locations that ensure maximum cost effectiveness and widest utilization of services.

Universal Access: Provider Availability

There is little in the traditional private insurance system to encourage providers of health care to go where they are most needed_ In fact, by using usual and customary fees to pay physicians, private insurers

reinforce the historical pattern of lower fees and incomes of physicians in

rural practice and perhaps increase the disincentives to physicians to move

to these underserved areas. Private insurers will not offer higher fees or other enticements to physicians or other providers to offer services where

they are most needed. The fact is that private insurers largely_ do not see Ft as their responsibility to fill this function. Both private insurance and our - of-pocket payments contribute heavily to the capital formation needed t 3

expand or introduce new health services. Provider charges and budgets

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include funds for repayment of loans and mortgages and accumulation of

capital for further expansions. Private payments contribute to such

expansion, but little in the private payment system at present encourages

the use of these funds for services in areas that need them most

There are some relatively recent exceptions to this rule, however. Health

maintenance organizations, which are private insurance plans, contract with their enrollees to provide not just payment for covered services but

health services themselves_ HMO's do assume a responsibility for

providing reasonable access to their services for their enrollees and, in fact

would and do lose their enrollees if they fail to meet this responsibility. Some HMO's have been able to make care accessible in inner city areas,

and independent practice association or foundation-type HMO's have promise for making care accessible in rural areas. The latter coordinate

and finance care of physicians working out of their own offices through

central referral, inpatient and administrative services. In addition, whale private insurers do little to attract providers to

underserved areas, they are becoming increasingly involved in efforts by

health planning agencies to limit the provision of more services in areas

where they are not needed. Some private insurers, notably Blue Cross and

Blue Shield plans, negotiate independently with hospitals over proposed

new services and the level of payment to these hospitals. But hospitals are

free in these situations to reject the insurer's proposals and bill patients

insured by these carriers directly for all their charges, especially if the

insurer covers only a small percentage of the hospital's patients. These

unfortunate patients or their health insurance group may then enroll with

a different insurer in order to "deal" with the hospitaL This places severe

limits on the pressure the insurer can exert For this and other reasons,

insurers cannot be expected to refuse payment to providers whose services

are not consistent with State or local health planning, as Medicare and

Medicaid can, unless the law requires it. Medicaid (and Medicare) operates in many respects like private insurers

such as Blue Cross and Blue Shield except that they are in a position to

bargain more rigorously with hospitals and other institutional providers. Medicare and Medicaid can and do refuse payment for costs of

unnecessary services and, by law, they will not pay for services

inconsistent with State and local health planning activities.

Medicare and Medicaid also have authority to pay HMO's to enroll

their beneficiaries and to experiment with financing arrangements that might encourage providers to offer better access to their beneficiaries.

How Public Providers and Grantees Can Help Irnprov., Availability

Government grants and public provider financing are the most direct

responses to access problems. Federal and State Governments give grants and States and local governments operate health care facilities in inner

city and rural areas where capital formation and investment from the

private payment system is difficult or impossible. The public providers and some grantees serve as the last resort both for

people who have little or no ability to pay and for people who simply have

poor access (for geographic, cultural or other reasons) to other providers.

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In fact, in marry cities the public hospital is the primary source of emergency room and after-hours tare for the entire population. In this

latter role, the public provider, like the grant system, fills gaps where

capital formation and investment from the private payment system do not exist and logically should collect from patients (or their insurer) the full cost of their services.

Given the expansions in private insurance and Medicaid coverage

suggested in this paper, go.wernment might: Specify . as a major responsibility of public providers and grant programs the startup of new health care resources or the maintenance of services not otherwise available, rather than

subsidize services on an ongoing basis that are covered under private insurance or Medicaid. Require that charges be collected from all patients (or their private

insurers or Medicaid) except in extreme cases (such as illegal aliens) where insurance is not available.

Appropriate Utilization of Care by Everyone

Even if all children and pregnant women knew they could afford all appropriate health services and had physical access to these services rce-any

still might not make use of the services they or their children need At present, with such mixed and fragmented systems of financing, many fail

to use services appropriately. Among the reasons are: Reimbursement of providers for various services with fees inap- propriate to the importance of 4he services Lack of information or understanding about desirable health care Embarrassment or fear of the health care system such as that experienced by adolescents needing prenatal care or family

planning counseling Dislike of questions regarding income and ability to pay and

embarrassment at having to accept free or reduced cost care Lack of transportation Refusal or inability to take time off during working hours for long or expensive trips to providers or long waits for services with no

advance telephone consultation as to whether it is necessary Frustration or confusion from having to visit multiple clinics or offices in order to get basic needed services Failure to understand and follow through on referrals Lack of concern or motivation by parents or guardians for the welfare of their children

Ways the Private Payne it Approach and Medicaid Might Improve Appropriate Utilization

Insurers and Medicaid that are required to contract with providers

to enroll and care for children and pregnant women on a

capitation basis, might include in the contracts: Both primary care services and coordination and followup on

referral care

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Convenient office hours

Telephone availability for consultation and appointment making Outreach services to children and pregnant women by "public

health" providers in schools or elsewhere which encourage use

of preventive or other needed services Payment for the costs of nurses and others needed to help

physicians or clinics provide these services An HMO, of course, would act as both insurer and provider in this

context and should meet these same requirements. All private insurers and Medicaid programs might be required to

provide pregnant women and parents of children information for

enrolling with a provider in their area and ensuring that either

enrollment occurs or notice is sent to the State health department for followup to ensure assignment to the appropriate health

program. It might be required that fees allowable by insurers to enrolling

providers and others for selected services reflect the importance of

these services to health in order to encourage providers to offer the

most appropriate services. Private insurers and Medicaid could be required to see that

critical preventive services were furnished by all enrolling providers and to call to the attention of the provider and patient any

services that are potentially overdue.. Insurers might be required to

submit a record of critical preventive services provided to the patient and provider yearly, or subs't notice of changes in

insurance coverage of a particular indivicivil due to change of

or other factors.

Both Medicaid and private insurance could be required to pay

providers any deductibles or coinsurance through the "health

credit card" mechanism described earlier. In this way, any

financial risk related to care would accrue to the insurer or

government rather than to the provider, and the need for inquiries about patient income by the provider would be mitigate& The

disincentives attendant to income determination at the time care is

sought would also be ensured by extending Medicaid and private

insurance coverage to more children and women as suggested

earlier. This would mean that income determination occurs only

at the time Medicaid eligibility is established and not at the time

health services are required.

Ways Public Providers and Grantees Might Improve Appropriate

Utilization

Appropriate provision and utilization of services would require that (1)

adequate providers agree to participate with private insurers and Medicaid, (2) all children and pregnant women are brought into early contact

with providers, (3) providers reach out to patients who otherwise might

not follow through on needed care (especially children), and (4) other

relevant community services be coordinated with provider efforts to

improve the health of pregnant women and children.

526 531
Provider contracts with insurers and Medicaid to treat patients on an

enzollment-capitation basis as described above should help provide some of the above services and also serve as coordinating ms, but there may not be enough providers available in some areas who are willing to

enter such contracts. Those who do are likely to find' that more extensive outreach and case-finding is required for some cases than can be organized or financed under enrollment-capitation agreements, and that some community services such as housing and sanitation are difficult to

coordinate under such agreements. Under such a system: All public providers and grantees might be required to enter into

enrollment-capitation agreements with Medicaid and private

insurers in their area

States might contract with public providers, grantees, or other private providers (such as hospitals or foundations), as recom- mended above, to provide "public health" services to all children

and pregnant women, and in addition: Operate a health care registration system to identify all children

and pregnant women in each area or school district Assist each child and pregnant woman to enroll with a provider under their insurance plan or Medicaid and, when necessary, direct them to the State office that can assist them with the

purchase of insurance coverage Conduct outreach, case-finding, and monitoring programs to

register and enroll patients and to ensure followup on care prescribed by enrolling providers in problem cases Coordinate provision of other community services (such as housing, canitation, food and nutrition, and transportation) with care given by enrolling providers

THE EFFECT OF ECONOMIC AND POLITICAL

CLIMATE ON POLICY CHOICES

The possible changes in the four approaches to financing health care for children and pregnant women imply the need to make a number of basic policy choices. Some policy issues are so basic that without resolving them

one cannot develop a coherent set of possible changes.

Role of Private Versus Public Sectors

The basic economic and political philosophy of the United States

requires that the private sector be used to the greatest extent possible in

the attainmenta of national policy goals, and that government's role be

limited to the provision of incentives and regulation that best enable the private sector to function and the provision of public services and funds only in those instances when the private sector is unable to provide them. For government to do more than. this in health financing care for children and pregnant women would require more evidence of failure of

the private sector and more willingness on the part of taxpayers to give

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government the funds and authority required than exists at present or is

likely to exist for many years. For this reason, the options do not include a government financed and administered system of care for children and pregnant women either through a massive Federal grant program or a Federal health insurance program hike Medicare.

Public Versus Private Financing

Given the current economic problems which are apt to continue for some time it is apparent that greatly increased Federal or State

expenditures from general revenues are unhicely. For this reason, every

effort should be made to encourage private employers and individuals to offer more comprehensive coverage to more children and pregnant women, paid for by private insurance premiums. For necessary public expenditures, it seems more likely that a special tax might be levied

earmarked for the specific purposes of health care to children and

pregnant women; and it seems most likely such a tax such as the suggested

surcharge could be levied if it had some clear relationship to problems in

the private insurance system_

Voluntary Versus Mandatory Participation of Providers, Insurers, and Purchasers of Insurance

Legislators in the United States traditionally have resisted requiring

individuals or institutions to protect their own welfare or even to protect the welfare of others, unless the harm to others is grave, and there is

evidence the steps will not be taken voluntarily. In the case of health

insurance and health care, evidence seems to indicate that basic insurance

is offered and purchased in our society when the incentives are right (as with employee groups), and that providers participate when payments are

reasonable. It seems possible at least that insurance coverage of children

and pregnant women could be improved by limited government regulation of insurance 4:overages of children and pregnant women to ensure availability of basic coverage for everyone, plus tax incentives to

employers, employees and individuals to purchase insurance, plus improvements in Medicaid, public provider and grantee programs. One

could argue, in fact, that the critical issue is one of costs, in which case a

largely voluntary system might work if the government is willing to offer

the incentives and subsidies needed to make it work. As long as these possibilities exist, the legislators are far more likely to support largely

voluntary systems than to expand government regulation at this politically

sensitive time.

Federal Versus State Government Roles

Regulation of insurance and the organization of many elements of

comprehensive health care for children and pregnant women traditionally

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have been largely State activities, with Federal funding assistance and guidelines. The major exception has been direct Federal grants for demonstration projects. While this has led to wide variations in the level of services provided, it clearly reflects variations in political willingness in the States to legislate in these areas and reticence in the Federal Government to assume the costs and political burden of these functions. At present there is considerable activity in State legislatures regarding health

insurance regulation, and promise of considerable innovation_ Moreover, the Federal Government at this time seems politically less likely than ever

to extend its aerninktrative reach further into what are traditionally State and local affairs. It therefore is most practical to encourage States, with

increased Federal support, to mount programs to improve financing of health care for children in the belief that, in time, suctessful programs will be replicated in all or most States.

Use of Insurance Reimbursement of Providers

Versus Grant or Other Approaches

Insurance (both private and public) has traditionally paid providers ways that are widely acknowledged to do little to facilitate many aspects of desirable health care (such as fee-for-service) and perhaps to discourage

it. On the other hand, many- would argue that government grant programs pay for care in ways that lead to desirable care if the grant is large enough. There seems no clear evidence that these methods of payment are unchangeable however, and both private and public insurers are developing and implementing systems of paying for care (such as capitation) that seem more conducive to better care. To abandon insurance in favor of a

grant approach for paying for care in most cases seems to fly in the face of both developing potentials in insurance practices and the political possibility of raising Federal, State or local tax revenues to finance a massive grant program.

Phased Improvements Versus Comprehensive Plans

To describe a comprehensive program, even one enacted in steps over a defined period of time, carries with it two major political and economic F rst, by suggesting the final goal at the outset it presumes that the political objective is clearly known from the outset and that earlier steps will pvove inadequate. This is untrue both politically and on the basis of present knowledge of how best to finance health care and, above

all, it ensures that every institution that will or might be adversely affected

at some intermediate step of the process will mobilize politically against

the very first step. Second, this approach makes the economic costs of the entire program a matter of debate at the outset The economics and

politics of the times argue for practical steps that can be taken without unduly prejudicing the ultimate outcome.

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Improvements in Health Care for Children

and Pregnant Women Versus Health Care

for the Entire Population

Federal, State and local governments have histories of special programs

for financing health care for children and pregnant women and continue

to entertain proposals for strengthening these programs. Politically and

economically such programs might be more possible than programs for

the whole population and need not wait for such programs for the whole

population. On the other hand, government can only go so far in making

special demands of providers, employers, and individuals with regard to

children and pregnant women before it creates disincentives. For example, providers might elect to devote less effort to these populations and more

to patients with whom they have less red tape and interference with their

practice. Likewise, small employers who offer no or limited coverage to

their employees might be discouraged from buying any or keeping what

they have, if the cost of insurance is unduly increased by requirements

that children and pregnant women be covered. These constraints in

programs dealing with only children and pregnant women need to be carefully considered in decisions regarding subsidies for insurance

premiums and mandatory and voluntary requirements. Given these constraints, it should be clear that many forms of cost

control and cost containment based on government regulation and/or

national or area budgeting of programs for children and pregnant women only (as it is under Medicare) would be nearly impossible to implement without the risk of diminishing the quality and quantity of services

available to these populations.

A SYSTEM OF SUGGESTED CHANGES IN FINANCING THAT MIGHT LEAD TO

MORE DESIRABLE HEALTH CARE FOR

CHILDREN AND PREGNANT WOMEN

The changes outlined here are organized around three general areas: (1)

modification in the present private insurance system designed to improve

health care for pregnant women and children, (2) improving Medicaid as

an insurer of health services for poor women and children, and (3) giving State governments substantial new rolcs in using public providers, grantees, and others in the planning and startup of community resources

for care, in providing selective preventive and relate,i services, and in

ensuring and coordinating appropriate utilization of The possible changes reflect the political and economic factors

discussed previously. The objective is the establishment of an expanded government financing role only when private insurers and providers are unable or unlikely to meet the need. In some cases, alternatives to a

suggested change are described that might better solve particular problems. In each case, these alterna Lives seem to be either more costly or

politically difficult and less possible to obtain through legislation.

530
The options are not meant to be definitive and complete, but merely

outlines of possible approaches in an effort to stimulate policy choices. Proposals that build on these suggested changes would need further clarification before they could serve as the basis for drafting legislation or

regulations.

I. Strengthening the Existing Private Payment System

The private third-party payment systems can be improved to provide

comprehensive care, universal access and appropriate use of services by

children and pregnant women by the following changes: A. All health insurance plans might be required to offer as an option or to actually include a standard set of services for children and pregnant women established by law, and changes made based on continuing review by the Secretary of Health and Human Services and recommendations of an Advisory Council on Health Insurance for Children and Pregnant Women.

1. The standard set of services would include specified high- priority preventive (such as family planning), prenatal, and

postnatal services and specified well-child care as mandatory minimums in every insurance policy sold and would have to

be covered without deductibles.

2. The standard set of services would include one or more

optional voluntary insurance coverages that would be logical extensions of the minimums that every insurer must offer with every policy. but that the purchaser of insuranc° can

elect to purchase or not. The standard set of services would specify public health, preventive, and other services that could be best organized

and offered to all children and pregnant women by public providers and/or under Federal and State grants to other providers funded in part by an insurance surcharge as described below.

4. Which services were mandatory, which were voluntary, and which were public health services would be decided by the advisory council based on the relative importance of the

services to health, their relative cost, their insurability, and

other policy considerations (e.g., should men who purchase "self only" insurance be required to pay a premium

contribution toward the child and pregnant women ser- vices?).

5. The advisory council would also specify any services, for purposes of encouraging appropriate provision and utilization, that should only be covered when provided in certain

settings, or by certain types of providers, or in conjunction with other services, or at certain payment rates compared to

rates for other services relative to the importance of the

service.

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6. The advisory council would also review and suggest rulings on the "allowability" of various insurance coverage practices

that affected services, such as exclusion of preexisting

conditions or waiting periods for maternity benefits.

7. A Federal reinsurance program could be established to

protect insurers from unexpectedly high costs of mandatory

services that the advisory council considered difficult to

insure because of unpredictability of use of such services, or other factors.

B. The premiums for all group insurance sold and the cost of self -

ins coverage might include a surcharge that would be set, collected, and administered by State governments within Federal guidelines. These revenues would be matched by Federal contributions that subsumed all or relevant parts of various existing categorical grant programs to the extent the State

adhered to guidelines concerning use of the funds in each of

these categorical areas. If the guidelines were not adhered to, that categorical area for that State could be administered

federally. The State would utilize these revenues for the following

purposes:

I_ Funding of public health, preventive, or other services

judged by the advisory council to be best organized and offered to all children and pregnant women by public providers and/or State and Federal grants (e.g., preventive dental services in schools). This would require insurers to contribute to the costs of services that could not be

"insured" in the classic sense but whose use would affect

both health status and the use of insured services.

2_ Funding, planning,, start-up, and initial operation grants for primary health care services to children and pregnant women in. underscrved areas (or for types of services such as ambulatory mental health care). The advisory council and Secretary would judge where adequate private capital fort mation for such investment was unlikely. These funds could be matched by the Federal Government if the total was used by the State pursuant to the Secretary's guidelines. This would require insurers to contribute to the accessibility

of the services they insured.

3. Subsidy of private premiums for children and pregnant women who were insured as individuals or in small groups, in order to bring the premium to an affordable level as determined by the State. This would require insurers, HMO's and self-insurers to contribiAe to the cost of

insurance for people who, because of policy, competitive experience rating, and other insurance practices, were unable to afford insurance. Requiring all the good risks to

help subsidize the poorer risks seems a reasonable solution

to the problem. As an alternative, the surcharge would be

set, collected and matched by the Federal Government, but
administered through categorical grant programs from the Federal level for purposes 1 and 2 above. States might be granted a percentage of the surcharge plus matching funds

from their area for accomplishing purpose 3 above_ C. All private health insurers and HMO's might be required to offer to all individuals and groups who apply a general insurance policy (or policies) acceptable to the State government, covering

any individual or member of the family which would incorporate

the standard benefits for children and pregnant women and

would be sold at a premium the State considers affordable. This would require that some form of insurance that covered

everyone be realistically available for purchase by anyone who desired it and to which standard benefits for children and

pregnant women would have to be attached.

1. The portion of the premium for this general insurance that was attributable to the required standard services for children and pregnant women would be subsidized by the premium surcharge described above. 2. States might be encouraged to extend the premium surcharge mechanism to subsidize the premiums for services to others than just children and pregnant women under this

general insurance, in order to better ensure that individuals

and small groups purchased policies to which standard

services for children and pregnant women would be attached. In States that do this, the State might be encouraged by increased Federal matching funds to enroll their cash- assistance eligibles in these private general plans using Medicaid funds to pay the private premiums and offering

residual Medicaid benefits under separate arrangements. The intent would be to move toward integrating those

eligible for Medicaid into the private system in such a way

that providers would have no reason to distinguish between

them and others.

D. To encourage employers, employees, and individualsto purchase health insurance, and to add the voluntary standard benefits as well as those mandated for children and pregnant women, the

law could: (a) offer Federal tax credits or other tax incentives for

the premiums for the insurance and (b) support public education programs. Employers could further be required at the least to

arrange for voluntary group enrollment of their employees, including part-time employees, at the employees' expense, in

order t;.-.. give more people access to lower premiums and easier enrollment procedures. An alternative would be not only to

require that standard services be included in all insurance sold

but that all employers be required to purchase the insurance for

their employees. This would result in many small employers purchasing insurance who otherwise would elect to offer no

coverage rather than face the increased cost of artding the new

standard services. A still further step would be to require not only that insurers offer State approved policies and rates to

533
534

individuals and small groups, but that all persons with children

not eligible for Medicaid must purchase some coverage. a All health insurance sold, and self-insurance, might be required

to cover any dependent women or children (from time of birth)

of the enrollee not covered by other policies and would have to

extend this coverage without further premium payment 3 to 6

months after termination of employment, divorce or separation,

or death, or until covered by a new policy. F. All health insurers, HMO's and self-insurers (including Medi- caid) might be required to make good faith efforts to negotiate enrollment agreements with providers, using the approaches below, under which children and pregnant women would be

enrolled with a provider of the enrollee's choice. This should

better ensure continuity of care and appropriate provision and

use of care generally, while establishing incentives for providers

to emphasize more primary care and less high-cost speciality

care. Some of these proposals are in CHAP for providers

reimbursed by Medicaid.

1. Under one type of agreement, participating providers would

have to agree to everything in paragraph 4 below, and would

be paid on a negotiated fee-for-service basis under which the

insurer's payment would be accepted as payment in full and

no further billing could be made to the enrollee.

2. Under a second type of agreement, participating providers

would agree to everything in paragraph 4 below, and would

be paid on a negotiated "capitation" basis for the mandated

standard services plus all possible standard voluntary ser- vices to which the provider and insurer could agree. Services

not agreed to in the capitation would be paid for on a feefor-service basis as above.

3. The insurers, self-insurers, and HMO's would be required to

publicize a list of these "enrolling providers," and make it

available at the time of selling insurance coverage so

consumers could evaluate the list as a factor in their

selection of insurance plans and could share the cost-benefit

advantage of using participating providers.

4. "Enrollment" agreements with providers would include:

a. offering at least all standard mandated services and all

voluntary standard services that could be negotiated with

the provider, b. coordinating and following up on referrals, c. ensuring accessible sites and convenient office hours,

d. ensuring telephone availability, and

e. reaching out to bring in referrals from schools or other

public provider programs.

5. The "capitation" and fee-schedu!...-. a negotiated with providers would include costs of nurses and others whom the

participating provider employs to so!lp provide these services.
6. Where the State government determines that an insurer, selfinsurer or HMO cannot negotiate such agreements with

adequate numbers of providers, the insurer would be

allowed to pay for services under other arrangements. Where

fee-for-service payment is used, the insurer would be

required to pay the provider's charges in full and collect noncovered costs from the enrollee under a 90-day credit

arrangement. G. Insurers might also be required to negotiate participating

provider agreements on a fee-for-service or other basis with

classes of providers named by the advisory committee as those most often used by children and pregnant women on referral from enrolling providers. These agreements would provide that

the insurer's payment be accepted as payment in full. Because of

the complexity and burden of requiring such agreements by all

insurers with all types of providers, only those most used might be required. H. All insurers, self-insurers, and HMO's might be required to

reimburse both providers with whom enrollment agreements exist and others (who either refuse such agreements or arc offering secondary or tertiary referral care not included in such

agreements) only for services andVor facilities approved by the State plan for regionalization of health services to children and

pregnant women; and they might also be required to reimburse providers for specific services consistent with the guideline of the advisory council regarding the appropriate rate relative to the

importance of the service and consistent with the level of care

(and associated overhead) approved for the provider in the

regionalization plan. These requirements, plus the general focus of the program on children, might create a framework in which

current inequities in payment for many children's services can be corrected.

I. State government might be left free (consistent with the

intentions of the requirements) to extend or add to these Federal requirements for insurers, self-insurers and HMO's, regarding mandated versus voluntary bervices, the size and uses of the premium surcharge, the benefits of individual and small-group

policies, and other matters.

IL Improving the Medicaid System

The Medicaid system can be improved to increase comprehensive care, universal access, and appropriate use of services by children and pregnant women by the following changes: A_ Medicaid might be amended to require States to cover both mandatory and voluntary standard benefits without deductibles or coinsurance (similar to the CHAP proposal) and to reimburse providers at rates comparable to those used by private insurers

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536

without limits on amount, duration, and scope except as set by

the advisory council. B. Medicaid eligibility requirements might be changed to require States to include all children, (through age 18, or as long as they

are full-time students, or disabled and dependent, and any others

covered under Title V of the Social Security Act), and all pregnant women who meet a uniform income standard (e.g., 80

percent of the poverty level), disregarding assets and categorical requirements. (Some of these changes are proposed in CHAP.) C. Medicaid might require that "spend-down" programs for chil- dren and pregnant women be implemented in every State as a

last resort catastrophic coverage for those without coverage. As an alternative. States might be required to implement "spend- down" programs for every citizen. D. The law might require each State, as the insurer of last resort under the "spend-down" program, to operate an insurance placement program for women of child-bearing age and chil- dren, and to assist them in selecting and being placed with an

insurer. At its option, the State could be given increased Federal matching funds to subsidize the premium of the insurance

selected through this placement program at a rate equivalent to

the actuarial value of the "spend-down" they would offer such

individuals. In this way Medicaid funds could be used to

encourage private purchase of insurance for primary care (the

standard mandated services) rather than to offer the last-resort catastrophic-only coverage represented in the "spend-down" progiams. This option would also constitute a step toward

enrolling low-income people (who might otherwise choose to purhase no insurance and rely on public providers and the Medicaid spend-down) in the same private plans as higher

income people and ensure that providers have no reason to

distinguish between them and others. E Medicaid programs might be required to make a pro rata

contribution, based on the number of women and children they

cover, to be used by the State government for the same purposes

as the insurance surcharge. F. Medicaid might be required to continue coverage of pregnant women and children, once it is established, for some period after

they are otherwise ineligible, or until they are covered by a

qualified policy_ CHAP includes such provisions. G. Medicaid, like private insurers, might be required to negotiate provider agreements as described above for "enrolling" pregnant women and children.

H. Medicaid programs, like private insurers, might be required to

pay for only approved services in approved facilities. The State agency responsible for regionalization of health services to

pregnant women and children would determine which services

are approved.

I. An alternative would be to take the above steps regarding Medicaid, but "federalize" the Medicaid program so that
administration of all the above activities was through the Federal Government.

M. Improving the Public Provider- Grantee System

A. Recipients of future Federal and Federal-State grants for health

services, and all public. providers who receive Federal funds might be required to:

1. Negotiate "enrollment agreements" and "participating pro- vider agreements" with Medicaid and private insurers, HMO's, and self-insurers who insure a significant number of children and pregnant women in their area 2. Offer such services as they are qualified to offer to all pregnant women and children who seek services 3. Collect for all covered services from Medicaid and private

insurers as broadened by this proposal in accordance with

the rule for enrolling and/or participating providers B. These same providers might be required to charge full fees to

children and pregnant women who are not insured, and also to

offer payment terms for noninsured expenses at least as generous as the 90-day credit arrangement described above for the case of

certain privately insured services. The intent would be to

discourage lower income individuals who are not eligible for Medicaid from relying on public providers and reduced charges

rather than purchasing adequate health insurance. An alternative

to the full-fee-with-credit approach would be to require all employers, employees, and all individuals to purchase some

insurance that included the standard benefits for children and

pregnant women. C. State governments might perform a number of health care provision and resource development functions within Federal guidelines using the private premium surcharge, Medicaid

contributions, and Federal matching funds described above.

1. Establish administrative, case-finding and case-management mechanisms in schools or other settings (such as those

funded under Title XX of the Social Security Act) for providing or coordinating public health and preventive

services to all children and pregnant women in their area or district; ensuring that all children and pregnant women in

their area or district arc "enrolled" or put in touch with

providers; making and following-up on referrals to provid- ers; and working with providers to coordinate the patients' use of other community services as :medal 2. Establish means to provide standard services to institutionalized or other children and pregnant women who are

constrained from enrolling or obtaining needed care and would remain unreached without state initiative.

537

5 .4 9
3. Fund planning, startup, and initial operation of needed

primary health care services. 4. Maintain data systems based on input from the school or

other public health services providers for purposes of patient followup and assistance to the family in coordination of

services and for epidemiologic and other research programs.

5. Establish and maintain a plan for regionalization of services

to children and pregnant women. D. States might be offered Federal matching funds for the administrative activities required to set surcharge rates, operate insurance placement services, and ensure compliance with this plan

and other requirements of this program by insurers, providers

and others affected by this program. E. The Federal Government might maintain grant and experimental authorities such as those under Titles V, XVIII and XIX of

the Social Security Act in the Public Health Service, and in the

Developmental Disabilities and Community Health Centers Acts

for supporting experiments and demonstration projects related

to the provision of health care to children and pregnant women,

that are more comprehensive, more universally accessible, and

more appropriately provided and utilized.

REFERENCES

(/) Gibson. R. M. National Health Expenditures.. 1978.- Health Care Financing Review. U.S.

Department of Health. Education, and Welfare. Health Care Financing Administration. Summer

1979.

(2) National Center for Health Statistics. Health United States. 1979. DHEW Publication No. (PHS) 80-

1232. Washington. D.C.: U.S. Government Printing Office. 1980.

538 A
THE ORGANIZATION AND

FINANCING

OF CHILD HEALTH SERVICES:

OPTIONS FOR POLICY

by ANNE MARIE FOLTZ, Ph.D.'

INTRODUCTION2

Four major and often conflicting goals of child health policy, disease prevention, comprehensive and continuous health care, access and

appropriate utilization of services, and adequate information systems, have all been promoted in public sector child health programs. A fifth goal, to avoid fragmentation of health care services, derives from the

conflicts inherent in the preceding goals. This paper is a review of the

literature to see how the organization and fmancing of child health

services promote or hinder these goals.3 In the light of these findings, options for child health policy are presented.

THE STATE OF RESEARCH IN CHILD HEALTH

Current research has had considerable limitations in evaluating the effect of organization and financing on child health service goals. Although there arc many studies on prevention, comprehensive care, access, and information systems, few deal with the organizational issues in

1)1,106E1:ant Professor of Public Administration. Health Policy. Planning. and Administration Program.

Graduate School of Public Administration. New York Univenity.

21 wish to thank Ellen reacher ...fir her excellent assistance in reviewing the literature and editing an

earlier draft of this suanuscaipt.

3The question of wbether child health services actually iisq:cove the health of children has. for the =son

part. been avoided. The effect of health services on health well ultimately have to be evaluated. but because

current relevant data are still incomplete. It is necessary to review the processes themselves rather than the

comeonses (except for mortality data).

539

514
the delivery of child health services. Furthermore, what data are available

are uneven.

Empirical studies on child health services were searched with particular

attention to the literature since 1970 on the Social Security Act Title V and

XIX programs, Maternal and Child Health and Crippled Children's

Services formula grant programs (CCS), Maternal and Infant Care (MIC), Children and Youth (C&Y) project grant programs, Early Periodic

Screening, Diagnosis and Treatment Programs (EPSDT), Neighborhood Health Center programs (N HC), and regionalized perinatal care programs. There are four major problems in using presently available research to

evaluate the effect of organization and financing on child health service

goals. The first is that although the literature is extensive, many of the

studies have methodological problems that make it difficult, if not

dangerous, to generalize from the study populations to a larger population. In this review I have tended to ignore those studies which may have

interesting findings, and which may even be frequently cited, but suffer

from methodological problems. The second difficulty derives from the scope of the studies. Most studies arc of a particular project, health center, ambulatory care center, or physician's practice. The studies are targeted to a limited geographic area and often do not relate specifically to a Government program or policy.

Larger area studies, for example, of a State's crippled children's program

are relatively rare. The Title V maternal and child health and crippled

children's programs in particular have had few objective evaluations.

A third problem stems from the inability of most studies to control

other variables in assessing the effect of organization. A few studies overcome this problem by comparing simultaneously several different

types of organizations serving similar populations, but these studies run

the danger of being micro-studies of idiosyncratic groups or methods of

organization. When studies apply to a total population, the findings may

not be generalizable to other populations. A final problem is the confounding of methods of financing and methods of organization. Neighborhood health centers may receive

financial support from several Federal agencies such as the Bureau of

Community Health Services (BCHS) and Medicaid in the Department of

Health and Human Services, from the Supplemental Food Program for Women, Infants and Children (WIC) in the Department of Agriculture, and from State agencies through construction grants. When Title Vsupported State health departments report the number of children

screened in a program, they do not usually indicate that some of the

program funds may come from Medicaid (EPSDT). Therefore, evaluations rarely distinguish the effects of financing itself.

In my review of the literature I have found no easy way to deal with this

confounding of organizational and financial structures. In addition to

complicating evaluations, the multiplicity of funding sources is responsible

for much fragmentation in child health care. It appears that policymakers, despite Government intervention in child

health for over 40 years, have very little ref the information needed to

make intelligent decisions. This may be viewed as a failure of the research

540
establishment to provide usable knowledge. However, the burden should be shared equally by program planners and administrators who have neglected to commission such studies. Clearly, the evaluation of child

health programs has been insufficient to date. Better and more complete

evaluations are needed to assess how organization and financing affect the delivery of child health services.

THE IMPACT OF ORGANIZATION AND FINANCING ON CHILD I-MALTH POLICY GOALS

Prevention

Prevention first appeared as a goal in the amendments to the Social Security Act of 1935. Under the mandate of "promoting the health of mothers and children" (Title V, Section 501), States received funds which

enabled them to establish maternity and child health services which

included well-child clinics. Section 502 of the same law required that States carry out secondary prevention through identifying children who were crippled or suffering from diseases which might result in handicap- ping conditions (the Crippled Children's Services CCS). In 1963 Federal Government participation in the prevention of illness was expanded when Congress further amended the Social Security Act to provide project grants for high-risk mothers and children (MIC and C&Y projects). The clearest and most recent statement of Federal concern about preventive

services for children appears in the 1967 Child Health Amendments to

both Title V and Title XIX (Medicaid) that provides for "such early and periodic screening, diagnosis and treatment as may be necessary for the promotion of health and the prevention of disease" (Section 1901). Prevention has also become an explicit goal of many States such as Minnesota ( I). In all Federal and State laws both primary prevention, the prevention of disease, and secondary prevention, the early detection of disease, have been emphasized. State and local health agencies have proved to be the most effective groups in promoting preventive services even though they have reached only limited populations. Other provider groups have been less involved in the provision of such services often

because they had other goals and interests.

State and I.,ocid Health Departments

State health programs have provided a wide variety of services, but often with only limited coverage. In most States only a small proportion of

the children was reached by Title V programs except during the early

days. In Vermont and Connecticut, for example, the proportion of the population receiving well-child services declined between 1950 and 1970. By 1970 only 1 percent of Vermont's and 7 percent of Connecticut's children under the age of 21 were being served by well-child clinics (2). As was noted by the American Academy of Pediatrics, "A small percentage

541
of the population at risk is receiving direct, personal, preventive services, even if only the poor are considered" (3). On the other hand, there is substantial evidence that State and local health departments have been effective in reducing perinatal mortality

and providing preventive services in selected areas. In California, a county with a strong health department yielded much lower perinatal mortality

rates than matched counties with traditional private practice systems or other traditional health care organizations (4). A North Carolina health department perinatal regionalization program resulted in a 34-percent decrease in fetal mortality compared to only a 10-percent decrease in a

control area (5). Whether the major factor in these studies is the participation of the health departments per se or the establishment of regional networks

financed by a variety of sources is not known. Also unknown is the

specific activity of the health department that leads to lower perinatal death rates. The most likely factor for change is the deployment of public health nurses, but this theory has not been tested. An early evaluation of the New York City MIC program was highly

favorable and showed that the program reduced infant mortality. Unfortunately, its results are difficult to interpret since no comparisons were made with other groups (6). A later study in Georgia showed a

reduction of 44 percent in total infant mortality in counties with MIC

programs, compared to 20 percent in counties without them (7). These excellent results may, however, L e partly due to a family planning

program which operated concurrently in the MIC project area. However, Michigan in 1974-76 also showed a consistently lower neonatal mortality

rate for those receiving care in MIC programs than for those not receiving

such care. The data on the fetal death rate were more equivocal (8). State health department Children and Youth projects provided greater health maintenance services for older children than did similar projects

run by medical schools or teaching hospitals. Unfortunately, they also cost more (9). In Baltimore in 1968-70, Children and Youth Programs were effective in preventing rheumatic fever among children in those areas

served by such programs compared to other children (10). The results, however, cannot be attributed solely to the C&Y program because an Office of Economic Opportunity Health Center also participated in the program. Nevertheless both were publicly supported programs. State health departments have been particularly effective in promoting mass preventive screening and immunization programs. In Massachusetts, the introduction of a PKU program resulted in an estimated saving of over $300,000 in 1972-73 (11). State health departments have also been

relatively successful in rubella immunization programs, although coverage

is by no means complete (12). In 1977, the Michigan EPSDT/Medicaid program seemed to have been successful in bringing the immunization

levels of poor children up to the levels reported for high income children

(13). State health departments have been less successful in mass surveillance activities, such as the development and maintenance of registries of crippled children that most States abandoned following World War Ii. Rheumatic fever registries have proved no more successful; for example,

542
only ono -third of the documented cases of rheumatic fever in Minnesota were reported to the State registry (14). The EPSDT under Medicaid has had a wide impact on the financing

and availability of preventive services. The program's complex administrative structure makes it both a welfare and health responsibility, but in 14 States, the program is either directly administered by or contracted out to

the health department (IS). In 1976, 16 percent of the 13 million children

eligible received EPSDT screening services (16). As might be expected, the EPSDT programs carried out by strong health and welfare departments

seemed more effective in reaching children (17). Despite the above instances in which State health departments have been effective in promoting preventive health services, their impact in

general has been extremely limited and focused more on filling gaps rather

than on planning statewide services. The General Accounting Office

(1979) found, for example, that State maternal and child health agencies have generally not fulfilled the role of focal point for improved management of activities directed at improving pregnancy outcome. Where States have operated preventive programs, the evidence would

indicate that the health agencies have been relatively successful and that problems arise mainly from the limited nature of the programs and from

their limited administrative capacities.

Neighborhood Health Centers

Neighborhood health centers are semi-public agencies whose contribution to preventive care is often difficult to define. Orso (18) found that for persons of all ages, preventive visits accounted for a lower proportion of visits in an urban Boston health center than the national average for office-based physicians.4 Although preventive services may have been

incorporated into illness-related visits, and thus been under-reported, the authors concluded that the amount of preventive care would nc. have

exceeded that reported for traditional practices. In Cleveland, of a sample of active patients registered with a neighborhood health center for the previous 5 years, 20 percent of the children 15 years old and under had not received physical examinations, although the pediatric director felt they

should have had one annually (19). In a West Oakland clinic, only 6 percent of the visits were for preventive care and these were mainly

immunizations and required school physical examinations. Neighborhood health centers, if not successful in delivering routine pediatric preventive care, have had more success with immunization. The General Accounting Office (1978) in its survey estimated that 89-92

percent of the children participating in the health centers had received

"shots, immunization, or oral vaccine". Thin figure seems high when

compared to the evaluation of an intensive outreach program in a neighborhood clinic where it was thought to be impossible to reach the BCHS immunization goal of 90 percent, particularly since funds for outreach workers were being severely restricted (20.

4TLis pervicolar censer also incorporated a GlkY project so its effects are coofounclecl by the method of

asssasciag.

543
As promoters of preventive services the NHC-'s have been only moderately successful_ This may be because they care for people of all

ages and tend not to emphasize the care of children for whom preventiv.

services are more important. It may also be because such centers do not

have sufficient staff and funds to carry out extensive prevention programs.

Schools

Schools at one time were believed to be ideal places for providing

preventive services because they had a captive population. In many States

regularly scheduled physical are a prerequisite for school attendance and all States have laws requiring immunization (21). Despite these

requirements, the history of school health services has not been productive. Yankauer (22) found that school health exams had a low yield and

were of little value as a case finding u ,=sure. However, there may be groups of children, such as the poor and nearpoor, for whom a non-traditional school health program, incorporating

screening treatment and follow up may be helpfuL A study of a school

health program in central Harlem which provided health assessment and

follow up for poor children showed that two-thirds of the children referred

for treatment did receive care. This was a much higher proportion of successful referrals than was -.)turid in school health programs without

follow up (23). Experimental comprehensive school health care programs in areas with

a high proportion of poor children have been established during the past

few years under the sponsorship of the Robe-t Wood Johnson Foundation A preliminary evaluation in Galveston, Texas, showed that 94

percent of health maintenance contacts for ci ldren took place in the

school (24). Even though newer types of compre.nensive care programs in

areas with needy children may be more effective in promoting health maintenance than traditional school health programs, there are at this

time no clear answers about the effectiveness of any type of school health

program. Definitive evaluation of these special school programs must

await further research_

Outpadent Departments

Outpatient departments of hospitals do not appear to be notably

successful in the provision of c:reventive services. One study indicated that

black mothers who used outpatient departments, like those who had no

regular source of care, were less likely to preventive care (25). A study

of an outpatient clinic in a teaching hospital by the McMaster University

Clinic of Canada showed that only 41 percent of the children under 1 year

had the number of visits recommended by the Academy of Pediatrics

(26).5 By the age of 4-5, the proportion of children making the

recommended number of visits had fallen to 20 percent and the highest

5At that time the Academy of Pediatrics recommended a very high number of visits (9-12) during the

first year. it :Ts perhaps not surprising that there was such a low compliance rate_ Since then, the Academy

has decreased the recommended number of visits during the first year to a level met by the clinic.

544
complete iramuniz' ation rates for any disease were 45 percent (26). The authors of this study did point out that after disvissions with the pediatricians about the standards and procedures, th4 proportions of appropriately completed procedures nearly doubled.

Health Maintenance Organizatioris

Health Maintenance Organizations (HMOs) or prepaid group practices have traditionally been regarded as likely providers of high levels of preventive health services as a result of the health maintenance incentives considered inherent in this form of organization_ During the late 1950's enrollees in the Health Insurance Plan of Greater New York (HIP) had

lower perinatal mortality rates than other persons in New York_ This held

true for both white and non-white populations and for those populations delivered by private physicians (27). These differences, however, could a. least in part be accounted for by socioeconomic differences in the

populations_

In 1979 HIP had a less enviable record in providing preventive services

to Medicaid eligible children_ Though a review of a random sample of 178 medical records the New York State Office of Health Systems Management (28) found that complete or partial preventive examinations were performed for fewer than 40 percent of HIP's child enrollees during

I973. As in all studies based on record examination, the question must always be raised whether these findings reflect poor services or poor documentation of services_ Nevertheless, because it is important not only

to carry out services, but to document thein, such findings are disturbing_ An East Baltimore study found that children whose usual source of care was an HMO did not have higher immunization levels than those who

used other sources of care. However, the children were-more likely to have had a physical examination during the previous year particularly if they were over the age of 6 (29)_

In a survey of Washington, D.C. children, the use of preventive care

(checkups) was higher among children in prepaid group practices than

among children served by solo practice physicians or hospital outpatient departments (which had the lowest rat) (30). Because this survey was carried out on a single somewhat urique population (90 percent black), the investigator warned that the results might not be applicable to other

cities_ Prepaid group practice per se may not produce what is considered

appropriate use of preventive services. Luft (31) has suggested that greater use of preventive services in an HMO may be determined by better

financial coverage rather than by the preventive care ideology. Once the

financial barriers are removed utilization of preventive services would be determined mainly by the patients themselves. For particular populations, such as w -;,-aor, belonging to an HMO by itself may not increase

appropria :.,.zventive care. In a study of Kaiser-Permanente Neighbor- hood Heal:. Center of California, pre-school children who received the

services of an outreach coordinator had a 55 percent higher utilization of preventive services than did a matched group of enrollees. The conclusion was that, at least for those children who were poor, outreach services were

545

5 5
an imp7rtant and necessary part of prevention, even in a prepaid group

practice (32).

wee-far-Service Private Practice Physician

In general, private practice has not been considered as effective as other

forms of organization in promoting prevention services. A survey of

pediatric practices in Baltimore s' -.7ved that only 80-84 percent of the 5-

year -olds had complete recorded immuniz' alions for DPT, polio, and measles and only 12 percent had a recorded hema;.acrit or hemoglobin

(33). The low number of procedures carried out could represent low

recording, or that these procedures were not carried out in private

practice. Similar findings on immunizations were found in physicians' practices

in Iowa. In that study, only 36 percent of.the 2-year-old children surveyed

in 13 private practices had complete recorded immunizations as recommended by the U.S. Public Health Service for that age group (34).

As mentioned previously, children in Washington, D.C. who were

patients of solo practice physicians used less preventive care than those in

prepaid group practices or hospital outpatient departments (30). However,

a subsample :.3 f those children had a higher than expected number of

illnesses. These differences were not related to the organization of care

(35). Later findings, although consistent, were not statistically significant,

and must be viewed with certain caution (35).

A Rochester survey drawn from one-quarter of all children born during

1965-1969 who did not have a private physician found that less than 10

percent received "a level of health supervision that is considered adequate

by Rochester pediatric s-andards, and less than 1 percent received the

level recommended by the American Academy of Pediatrics" (36). Thus,

private physicians, when scrutinized carefully, do not have an illustrious

record in promoting preventive care. The organizations most apt to

promote it are public health departments and sometimes HMOs.

Comprehensive and Continuous Care

Comprehensiveness has been taken to mean (1) the provision of all

services from preventive through rehabilitative and (2) the provision of

services to an entire population. The first definition of comprehensiveness

has also been expanded to include not oniy medical, but psychosocial

services as well (37). Comprehensive care as a goal appeared in the 1965 Amendments to the

Social Security Act as part of the projects for Children and Youth

established under Title V. As the legislation and regulations developed,

each C&Y project was to ensure that eligible children and youth within its

district received comprehensive ambulatory care at a single center, as well

as approprir ._e referrals for hospital care when necessary. Continuity of care has not been formally espoused in any LIgislation,

but was assumed as a necessary goal of good medical care. Its absence

from the legislative mandate may reflect a lack of interest among

546
policy-makers to ensure that quality care is rendered rather than just to

ensure that services or financing are available. Rogers and Curtis (38) in

reviewing the definitions of continuity of care point out that it can mean both the extent to which a single physician manages a person's health

care, or the extent of coordination of an individual's health care. For purposes of this paper, comprehensiveness means that all types of services are provided, that services are provided for all conditions, or that services are provided for an entire population; continuity is taken to mean both a single source of all care for an individual or a single source which

coordinates care from many sources.

State and Local Health Departments

Health departments have attempted to provide comprehensive care mainly through two mechanisms: the Crippled Children's Services (CCS) and CSEY clinics, but also have tried to achieve some comprehensiveness of care through the EPSDT program. The crippled children's program has not been comprehensive in either

the scope of conditions treated, the types of services provided, or the proportion of children with handicapping conditions it has served_ For example. of children born with cleft palates in Maryland in 1969-71, only 12.7 percent were known to the Crippled Children's Service (39). Moreover, many children who were both clinically and financially eligible, received services outside the CCS system (40). Estimates of the proportion of U.S. children with birth defects treated

by CCS in 1975 range from 14.8 percent for PKU to 37 percent for cystic

fibrosis (4I). However, these figures only indicate that CCS delivered

some care to these children; they do not indicate what proportion of total care required was provided or paid for through the CCS program. Only 14 of 49 States surveyed were found to be providing services for children with diabetes in their CCS programs (42). Inaf.1.-A4ua.te coverage

for diabetics in Florida by CCS led to the establishment of a State- sponsored Regional Diabetes program in :974 (42). In Appalachia, a

special mobile neurology team was formed to provide services not otherwise available to children in rural areas (43). Children in need of care were referred to other sources for treatment. Forty-two percent were

referred to the health department and for some who needed special

treatment the only available source of care was a University of Kentucky Medical School.

When the CCE program first began, most States had no restrictions on

financial eligibility. However, as costs of treatment increased, as more

types of illnesses were included in State CCS programs, and as funds did not increase greatly, States began to establish financial eligibility stan- dards for treatment_ Usually, these are set at levels high enough to include at least the working poor, with the assumption that Medicaid pays for the

poor. In addition to financing care, CCS also establishes services which are otherwise unavailable. Because this aspect of the CCS program has not been coordinated it is difficult to assess its effectiveness. For example, State CCS programs have established heart treatment centers, and cystic

547

- I)
fibrosis treatment centers, but there is no way of estimating how much of a

need has seen met or whether more or less should have been done. The

proportion of children served by this program has remained fairly low.

Because CCS is not comprehensive by disease, child, or financial eligibility and, because of the lack of adequate data, it is difficult to

determine whether or not continuity is provided either. Children and youth projects originally could be run by health

departments, teaching hospitals, or medical schools. However, C&Y

projects seem to have been most effective when run by health departments providing comprehensive care, preventing hospitaliAtion, providing

outreach, and moving children rapidly through the system (44).

In a !978 study of eight C&Y projects within one HEW region (45) participation by children and youth in the target area was relatively low

from 15 to 20 percent; for the two programs for which such estimates

could be made, participation of poor children was between 20 and 50

percent. The comprehensiveness and continuity of care also varied. In five

rural projects, only preventive services were provided, while in the urban

projects some, but not all, preventive, diagnostic, and treatment services

were available. All projects had nutrition programs Some projects provided social work services; others did not. No information is currently available on the effect of organization cr

financing on the comprehensiveness of services rendered in other health

department programs, such as maternity nursing or MIC projects. However, the very existence of MIC projects may reduce the comprehensiveness of care because they segregate children by age. Many health departments attempted to get around this problem by placing MIC

projects at the same sites with C8cY projects or other clinics. In this

the funding source of the program decreases comprehensiv:;ness and

shows how conflicting incentives and goals are created by piecemeal child

health policy. The Medicaid program was not initially concerned with comprehensiveness or continuity. When some State health departments (Texas, North Carolina, and Michigan) undertook screening for EPSDT they could not provide comprehensive or continuous care. Although the EPSDT programs in these States reached a high proportion of those children eligible

for screening and although State agencies could proyide preventive

services and payment for treatment they could not provide continuity of

care either through a single source provider or through an oversight

system. At best State health agencies have a mixed record in providing

comprehensive or continuous care, partly because they are required to

provide certain specialized services which are not available through the

private sector and partly as a result of their reluctance to become heavily

committed to providing direct health services (21).

Neighborhood Health Centers

Although the scope of pediatric services provided by neighborhood

health centers, either directly or through referral, is fairly comprehensive,

their performance appears.. _less adequate if the proportion of eligible

548
children actually served is taken into account. Neighborhood health

centers, like the C&Y clinics, have target areas to serve. However, there

are no data to show the.: extent to which such centers provide comprehen- sive coverage of a geographic area. Nevertheless, there is some evidence

that neighborhood health centers once they enroll a given population are

able to maintain a stable population, thus providing some continuity. For example, a Boston center was successful in keeping 80 percent of the patients who used the center from one year to the next (17). When neighborhood health centers are established in a new area, sometimes they lead to more continuous or comprehensive care and

sometimes they do not_ After the establishment of such a center in a district of Rochester, children in that district had fewer emergency room

visits than did children in the rest of the city (46). However, other studies

showed that this shift away from emergency room use did not always hold

true. Levy et a/. (4T four .z.1 marked differences in patterns of use among

the neighborhood health center registrants. Forty-four percent of children

at one center used it for limited primary care only. This meant that the neighborhood health center was used primarily for checkups, while the

emergency room was being used for treatment. At no neighborhood health

center were more than half the children receiving comprehensive primary

care.

One important aspect of comprehensive care is good management of

referrals outside the center itself. In a study of Boston area health services, neighborhood health centers (and hospital primary care centers) were more likely than other providers to refer children appropriately to other sourt---es of care (48). Thus, neighborhood health centers may provide

services which are more comprehensive than other forms of organization, but even with the range of comprehensive and continuous services they offer, fragmentation may occur. This fragmentation may arise because parents choose to use different health providers even when all needed care

is offered at one site.

Schools

In the past, school health services focused on specialized preventive care and screening but more recently there has been a shift toward the

establishment of primary care centers in school. When school health

centers are tied to a neighborhood health center with 24-hour coverage the part-time nature of the school programs does not limit continuity or

comprehensiveness of care. Nevertheless, despite their obvious advantages school health programs, even for primary care, are another source of

fragmentation of care. At present we do not have enough information to draw conclusions about the effect of organization and financing on the

comprehensiveness of school health services.

Comparisons of Alternative Ways of Organizing Care

Much of the evidence regarding, ort -omprehensiveness of care appears

in studies comparing several different ways of organizing child health

care. According to Starfield et aL, "A 'Medical Home' and continuity of

1. 549

z) .1
care are essential features of first rate medical care" (33)P Yet, the

literature indicates that few child care programs, whether public or

private, achieve this goal. In a study of lower and middle class infants in the New York area,

Mind lin and Densen (49) found that continuity of medical care was

lacking for 40 percent of the white middle class children, and for 90

percent of minority lower class children regardless of their source of care.

Other investigators found that one-third of children who were patients at a

hospital specialty clinic, had no source of primary care (50). Single providers seemed to be more effective than others in providing

continuous care. An experimental Bronx hospital program that provided a

walk-in clinic and a specific pediatric nurse practitioner for each patient that were available at all times resulted in lower emergency room use

among the experimental group than among a control group who had

several providers (51). In another experimental study which assigned a

single pediatrician to each patient, patient satisfaction was much greater

among mothers of children receiving the continuous care than among

those receiving episodic care (52). Pediatricians may be particularly

effective: children who identified pediatricians as their regular source of

care received more routine care than children who saw other types of

physicians (33) When various forms of organization of child health care are compared

for the degree of comprehensiveness of care, results are mixed. Gordis and

Markowitz could fund no differences in completeness of immunization,

morbidity, or mortality between children receiving comprehensive and

continuous pediatric care in a family clinic and those receiving traditional episodic care (53). In another study, they found compliance with physicians' recommendations was no better in the experimental group

than in the traditional care group. On the ether hand, two studies of

experimental physicians' group practices asscciated with hospital outpatient departments, but housed separately, reported better outcomes for

those children in the experimental groups. Alpert et al. in a well-designed

study found that children in the experimental group had received 70-75

percent of the "optimal" number of health visits compared with 40-50 percent for the control group (54). The experimental group had lower

hospital use, laboratory and X-ray use, and illness visits. However, there

was no evidence that morbidity was altered. Ullman, Kotok, and Tobin

found that children in another experimental physicians' group practice

had higher well visit rates and lower emergency room rates than children

using the regular outpatient services Or hospital (55). Mothers of these patients also said that if they needed help in an emergency, they would

call their pediatrician rather than the emergency room or the police.

Neither of these two studies presented evidence that morbidity or mortality were affected by the attempts to provide continuity and

comprehensiveness. From these data it seems evident that a single provider available 24 hours per day is the best organizational form to

6A -medical home- refers to a single provider who is responsible for providing or supervising medical

care for an individuaL

550
deliver continuous care. Comprehensiveness of care is maximized when

the essential primary care services can be delivered at one site.

Utilization and Access

The related objectives of access to care and adequate utili7_2tion have been at the heart of ;ill child health legislation in this country. Each act has focused on specific groups which, withoript public intervention, would

receive inadequate care. Title V funds were to be used particularly for children in rural areas or areas suffering from severe economic aistress

(Sec. 501). The Title V MIC and C&Y projects all emphasized services for poverty areas. Title XIX, by virtue of its eligibility standards, has been

devoted to the health needs of the poorest segment of the population. This was particularly reflected in the EPSDT program and in attempts since 1977 to expand coverage under that program. The studies most relevant to this analysis have dealt not with the organization of health services, but with the impact of financing on

utilization and access Therefore, it does not seem useful to continue to

discuss programs m terms of their 1:%rganizational patterns as we have done

in the previous two sections. Two kinds of studies contribute to the evaluation of comparison of utilization patterns before and after the financing of services is made

available, and comparison of the utilization of services by needy users and

by others_ Before utilization can be used as a measure of access, it must be

recognized that appropriate standards have not been established in either Government or private programs. Thus, the criteria in utilization studies vary widely. The greatest number of available studies are on the effects of Medicaid, which is primarily a financing program. The Medicaid program was developed and implemented on the assumption that the inability to pay

for care prohibits appropriate use and access and, conversely, that the availability of financing should increase access.' A second barrier to

access is simply the unavailability of services, time, or transportation

required to reach distant health care facilities. Medicaid program studies on access of health services present the best data on the effects of financing on utilization_ In 1969 children under age 17 in families with incomes under $5,000 visited the doctor 3.5 times per year if they received Medicaid, and only 3.0 times if the were not eligible

for Medicaid_ However, the children of high-income families (over $15,000) had 4.5 visits (56). These figures which are adjusted for at least a crude measure of health status, indicate that the availability of financing

through Medicaid reduced, but did not totally obliterate the barriers to

access_ Between 1964 and 1974 poor children under age 15 (family

incomes under $5,000) increased their annual visits from 33 to 3.7, while all other income groups decreased their annual visits (57). Nevertheless,

7For a more detailed discussion. see Dutton in this volume.

5-5 6

551
children of upper-income families still used physicians more frequently

than the poor. The Quebec hcalth insurance system produced similar results. Two

years after this system was instituted, althotigh the proportion of children

with symptoms of illness remained the same, the proportion of low- and

moderate-income children consulting a doctor increased(58). In the U.S., access to medical care, even with Medicaid, remains

limited. In one Michigan county, Medicaid covered only 43 percent of

two-parent poverty families and 57 percent of near-poverty single-parent

families (13). Moreover, in California, administrative formulae for the

allocation of these health service funds seemed to favor rural counties

rather than the more densely populated urban counties in which most of

the poor children lived (59). However, one should note that administrative

expenses may have been higher in rural areas because administration is always more costly where resources are scattered across sparsely populated areas. Through the development of additional health care delivery sites, such

as neighborhood health centers, public health service programs have provided health care to persons previously without access to it. It is

estimated that in 1978, about 12 percent of the persons in medically

underserved areas zeceived health care services from these programs (60).

Another report estimated that about 10 percent of the 45 million persons

residing in these areas were served by neighborhood health centers (19).

Whatever the exact figure. current forms of organising publicly supported

health care in medically underserved areas appear to be inadequate.

In assessing the effect of organizational factors on utilization, several

studies have been carried out in prepaid group practices. These would

indicate that the deterrent effects of fee-for-service pricing, even when

financed by Medicaid, were stronger than the organisational barriers that

might be inherent in a prepaid group practice (30). In another study based

on the same Washington, D.C. interview data, the author concluded that

in explaining utilization of health services "income-related factors,

particularly the type of health care system used, play a more inaportr.nt

role than income itself in determining patterns of discretionary use" (61).

However, prepaid group health plans despite continuing Federal support,

can scarcely be looked to as a major vehicle, at least in the near future, for

improving utilization of services, particularly for the poor. At present, prepaid health plans serve only 7 million persons in the United States,

about 3 percent of the population. Thus alternative means, such as

increased financing and a greater distribution of health resources, must

continue to be used to provide adequate access and utilization of health

services for children_

Information Systemss

Information systems, although not specified in any legislation, have

become the means by which the Federal Government ensures itself of the

gFor a more detailed discussion or information and reporting systems. see Zill and Mount in thib

volume.

552
States' accountability for the funds it has made available. In the Title V

legislation, this took the form of requiring that State plans be drafted to

ensure policy compliance. In addition, the Children's Bureau and its

successors in the Public Health Service set up reporting systems for both

formula grants under the Title V maternal and child health and crippled

children's programs. Reporting on the Title V projects (MIC and C&Y

programs) was less stringent and at no time did a system of nationwide

reporting on the projects develop. In fact, the Title V reporting systems

left much to be desired both in terms of service accountability and

financial accountability (62).9 Under Title XIX (Medicaid), reporting systems were a cause of major concern in Congress, but for the most part, the concern has been about

fiscal accountability, not service accountability. The information systems

that have been established such as the Medicaid Management Information System are designed to remedy problems such as fraud and abuse, that is, over utilization, not under utilization. Information systems serve several purposes: (1) to identify children in need :Ind to provide followup services to children so identified, (2) to

survcry the population from time to time to see if certain procedures, such

as :rainunization, are carried out, (3) to account for Federal and State

funds spent on child health_ However, few studies are available on the

effects of the organization and financing of information systems The crippled children's program attempted, particularly in its early

days, to set up registries, but these listings were rarely- used and proved

ineffective in making sure that needy children reached treatment Recent studies have shown that CCS programs more often than not are unaware of the number and identity of children in need in their States (40). High- risk registers were used in England during the 1950's and 1960's, but they did not prove successful in identifying children in need of care (63). Similar findings were reported in the study of a State rheumatic fever

registry (13). Methods for detecting perinatal risk have been developed, but to date there are no studies of the efficacy of such risk registers_ Thus, the existence of a high-risk or identification registry per se does not

improve services for children. The weaknesses of these statewide systems stem in part both from the lack of high-risk predictors of known validity

and reliability, and from the lack of sufficient staff and an infrastructure

to use those predictors that might be effective in improving child health

(64). Since 1973, the EPSDT program under Title XIX has been charged with

identifying children eligible for services and seeing that services are provided. Eligibles are identified, not on the basis of risk, but according to

the financial .1 and categorical criteria of the welfare-based Medicaid

program. The fact that welfare/social service departments have case files on all families eligible for Aid to Families with Dependent Children

(AFDC) should r ake identification easy. However. many States have had

severe problems in setting up computer systems that could identify eligible

children and within that group. those who needed cars. (64, 21). One problem in identifying children existed for those States that

included the medically needy in their eligibility files. Since these children

iFor a more detailed disc-v.53ton of Title V reporting se; Kli;rnan's Title V paper in this volume.

553
usually were identified only after they or their parents had accumulated

sufficient medical bills to make them eligible for the screening program, their names were not readily available or computerized. Just how effective

these Medicaid systems have been is unclear. A review of several EPSDT

evaluation and demonstration programs indicated that although a

statewide EPSDT support system could be used, as it was in South Carolina, it often ran into problems such as the inability to record

unsuccessful contracts with a family or to link a family contact form with

other data (65). Other EPSDT information system problems have come from the need

to transfer information from one State agency to another_ For example, in

many States, the welfare/social service agencies would not transfer data

on eligibility to health or education department workers who were charged with finding the children. Another type of problem arose in Texas which

had an excellent computerized information system which printed out the names of all children due for screening. However, these data once

available, rather than being given to case workers, went to central offices where they sat unread. The case workers claimed that, in any case, the data would have been obsolete by the time they received them. The major problem with Medicaid information systems, however, is . that they were designed primarily to provide information on payment, not on services_ Those States that have been most successful in overcoming

these ointacles are those which from the outset had strong computerized data bases and a capacity in both health and ielfare departments to

function effectively (17). States such as Michig An (66) and Texas (21) were particularly successful in developing information systems to identify

children needing services_ Surveillance activities are an integral part of a health department's role. Surveillance is carried on through the reporting of cases of specific diseases by physicians to local and State health departments. Such

reporting is relatively accurate for serious diseases likely to be diagnosed

by physicians. However, the systems set up to handle such information are not always designed in such a way as to be compatible with the needs of health services planners. Two examples stand out as exceptions. One was

the immunization surveillance activities begun in 1977 under President Carter's directive (no evaluation available); the other was a Minnesota

State health department influenza surveillance system in 1974-75 which

included direct monitoring through laboratory reports and indirect monitoring throti,".. absenteeism rates (67). The primary difficulty with

surveillance systems is that to be successful they must be disease or procedure oriented. Thus, they cannot serve as the basis for ongoing monitoring systems for all health services. Any effective information system that can provide data on the services

rendered as well as financing must include the ability to provide

surveillance for disease-specific conditions as well as overall information

about the health needs of children. The problem with present systems is

that even where ...hey exist, they are fragmented and gather information on only selected segments of the child population whether by age, disease, geographic area, or financial eligibility.

554
SIM& _GTHS AND WEAKNESSES OF HEALTH

PROGRAMS

IN PROMOTING GOALS

Prevention

Public State and local health departments have been among the most effective groups in delivering preventive care to children. Their programs have been particularly successful in carrying out immunization programs, promoting mass screening programs, programs of pennatal care, well- child services and in particular MIC and C8rY projects. It is not surprising

that public programs have been most effective in carrying out preventive

care for poor children since that is what the public sector has emphasized. Public agencies, following a philosophy of not interfering with the private practice of medicine, have stepped in only when it was evident that children's needs for preventive services were not being met by the private

sector. This means that although public agencies may have been successful in reaching limited groups of children, they have not succeeded in

providing regionwide or statewide services. Private health providers, neighborhood health centers and prepaid

group practices have been less effective than public agencies in promoting prevention. At least, that is what can be concluded from presently

available research. Part of the problem in evaluating the effectiveness of preventive care is that different standards jor preventive care have been used in different studies. If the minimum standards for preventive care were nationally agreed upon we would then have clear criteria against which to assess such programs. One suoccssful form of organizing preventive care for children is to have nurses or lay workers visit or even screen children in their own homes. In

such a progra.a. developed in Colorado, half of the families considered to

be high risk for child abuse or neglect were given special counseling, and well-child care which included regular home visits. They also received more than the usual number of office visits and telephone calls. At the end of one year, no child in the high-risk group who had received special care had a serious injury that was considered to be due to abnormal parenting. However, such injury did occur among high-risk families who did not receive special care (68). A program in Appalachia designed to promote more traditional preventive care for children produced mixed results. /lc, differences in health outcome were found between children who received special outreach services and those who did not. However, problems in the

research design may have obscured real differences between the two

groups and the authors therefore concluded that the study group may

nevertheless have benefited from special outreach services despite the lack

of significant findings (69).. Hockellnan and Zimmer (36) found that hospital-based public health

nurses could significantly increase the entry of poor babies into the well- child care system, while Dawson (70) reported that a screening/outreach

555
program in a housing project also proved effective in getting high-risk

children into preventive care services. The EPSDT program found that the critical factor in getting poor

children to preventive care was the manner in which the parents were

informed of the services available. When parents were informed in person

at the welfare department or during a home visit by case aides, they were

more likely to use preventive services than when informed by mail or

telephone (71). Whether performed by public health nurses, lay visitors, or case aides,

outreach seems to be an important factor in ensuring preventive care for

high-risk children_ These services have been found useful for targeted

programs such as prevention of child abuse or perinatal mortality (3), for

more general programs such as prepaid group practices (32) or EPSDT_

Comprehensive and Continuous Care

No public nor private system seems to-deal adequately with comprehensive or continuous care_ Again, definitions cause problems in evaluating

programs. lf, however, the basic minimum is assumed to be a single

provider charged with responsibility for primary care and coordinating other care, this goal has not been realized either in public or private

s----terns. The best sources for such care seem to be single providers who in

groups or in outpatient clinics can provide 24-hour service. Certainly,

mobile clinics have been of little use in promoting comprehensiveness of

care since they create their own forms of fragmentation (72).

In attempting to establish continuous and comprehensive care, the

methods of organi7ing programs themselves promote fragmentation. For

example, programs such as CCS, designed to meet special needs, provide

comprehensive services for a given condition, but fragment services by

diagnosis or by separating services for the handicapped from those

delivered by regular primary care providers. MIC and C&Y projects

fragment by age group; neighborhood health centers by geographic area.

The real question then becomes how much comprehensiveness and

continuity arc necessary to promote child health? That question cannot be

answered easily because the available literature seldom addresses outcomes. it does give some clues, however. For example, good health does

not necessitate that all medical services be rendered at a single site.

However, it is desirable that all primary care services be provided at one

site_ Even then, if the facility orstaff are not available around the clock it

is likely that users will also resort frequently to emergency rooms It may

be desirable to have the primary care provider coordinate all other types

of services. However, because there is little evidence to indicate that this is

the present pattern for children receiv-:_ig care through either the public or

private sector, it may seem unreasonable to require that public programs

provide services hitherto unavailable to those in the private sector.

Utilization and Access

Utili.7-Ation and access have been affected by several public programs.

Medicaid has reduced the gaps in utilization between low-income and

556
high-income persons. Public Health Service programs such as the neighborhood health centers have reached about 10-12 percent of the persons in medically underserved areas_ Health maintenance organizations, many of which receive start-up financial assistance from the Federal Government, serve 3 percent of the U_S_ population as a whole. The

effects of the Title V maternal and child health and crippled children's programs on utilization or access are harder to assess since few

evaluations are available. However, it seems evident that the planning and

service component, particularly of the CCS program, has been important in many States in ensuring the availability of certain types of services. Therefore, both financing and organization by Federal and State agencies appear to be critical in improving access and utilization. For instance the relationship between CCS and other service and

financing programs is complex_ If insurance were available for all parents with handicapped children instead of the present financing for the poor under Medicaid. and the working poor and some middle class under CCS, the financing aspect of the CCS program would no longer be necessary. Whether the service components would still be necessary cannot easily be determined on the basis of presently available data. One is inclined to say they would because, as the EPSDT programs has demonstrated, a

financing program that merely gives recipients the opportunity to buy

services that are not available is not very useful (73). In addition, there is increasing evidence that system-determined factors must be distinguished from patient-determined factors in health services utilization. During a 6-10-year period in two prepaid practices, some

children were consistently high users while others were consistently low

users despite the fact that they were members of the same type of practice

(74). Therefore, to focus solely on organizational and financial barriers of care may be misleading. It will be important to learn -whether those

children who are consistently high users are those at highest risk and

therefore need :he most contacts and whether the lowest users are at

lowest risk. If this is true, research must also be undertaken to learn whether it is possible to identify poor children at risk, or whether only the utilization patterns elucidate the risk information after the fact.

Information Systems

Information systems and accountability are provided better by State

systems than by projects, localities, or the private sector. However, none of the public systems have been adequate to date_ The three elements of such a systemidentification of children in need, surveillance of the population, and accountability of funds and servicesremain difficult and costly to monitor. However, they can be monitored only by public

agencies with appropriate reporting from private providers. The ability to establish accountability in terms of services rendered may prove to be the most important contribution of information systems_ Presently existing child health programs have done very little to ensure

such accountability. The Title V formula grant reporting systems have provided frequently overlapping or duplicated data. When the MIC and C&Y projects provided data at all, it was expressed not in terms of the

557
population in areas served, but in relation to that proportion of the

population enrolled in the program. The EPSDT program also has for the

most part functioned without adequate accountability and use of its

information systems. Virtually none of the present public sector child health systems have

been able to supply any degree of accountability for their programs

However, lest one be too harsh on the public system, one must It Prep in

mind that there is no accountability in the private system either.

Information systems have great potential for assisting in the delivery of

child health services. Because they have not received high priority in the

past and because they have been used mainly to assess accountability in

financing rather than quality of care, their potenti!.1.! remains untapped.

AVOIDING FRAGMENTATION

The most persistent complaint about child health policy is its fragmentation. Fragmentation of children's health needs occurs because programs

are developed on the basis of age (75), disease, area of residence, type of

care, method of financing, or form of administration, whether. public or

private, Federal or State. All health policy fragments care in some way.

The problem for policymakers is to determine what type and degree of

fragmentation is acceptable and what is unacceptable. The most evident fragmentation occurs when responsibilities for

preventive and primary care are assigned to different providers. The Title

V programs, by establishing well-child clinics, provides preventive care

through the public sector while treatment is handled by the private sector.

This split was intensified in certain States under the EPSDT program

where the Title V agencies provided screening for all Medicaid-eligible

children but limited the services strictly to screening Even immunizations

were often carried out separately at different sites or times. A public

health nurse in one State pointed out that staff in the EPSDT screening

clinics, even for a problc.:(1 ach as scabies, had to refer the child to a

physician rather than pres.: ri'..)e the appropriate and readily available

treatment (20). Till's fragmentation has been somewhat mitigated in neighborhood

health centers and hospital primary care centers. However, these programs

fragment care by geographic area or hours of the day and continue to

serve relatively small numbers of children across the United States.

Fragmentation also occurs when primary care is separated from other

levels of care, thus raising questions about the ability of public agencies to

provide continuous care.10 Either all primary care is not provided by a

single provider or at a single site, or primary and secondary care are

rendered by different providers with little coordination. This presents a particular problem for those primary care centers, such as some

neighborhood health centers, which do not provide 24-hour service.

Under these circumstances, private providers through use of telephones

14Whether continuity contributes to the quality of care is debatable. Some recent evidence would

indicate that it does net Sec (76)

558 5uj
seem to provide more continuous care than do the ostensibly comprehen- sive neighborhood health centers. Administrative arrangements are another source of fragmentation for child health programs and this takes many forms. First, much child health

responsibility is divided between the public and private sector. r- financing and health services arc available for only those grc

children who do not have access to the private sector. Therefore lc

financing programs, such as Medicaid, pay for children on well._

those otherwise categorically eligible; categorical programs, such as

finance and provide services for children with certain handicapping

conditions who also meet financial eligibility requirements; neighborhood health centers, C&Y, and MIC projects meet the primary and some

secondary health needs of children in certain geographic areas. The public

sector usually only makes its presence known when the private sector has already demonstrated its inability to provide services. Strong health

department maternal and child health programs tend to be found in States where the networks of private preventive services are relatively limited for poor children. The absence of competition from the private sector

facilitates public action. The public agencies perceive their roles as filling gaps, not establishing complete care systems. However, even in this

limited role, public health agencies would nxd better information than

they now have to know what the needs are. Moreover, under the current system of service, children and their parents have difficulty finding out what resources are available through either the private or public sector. Another form of administrative fragmentation results from multiple public health programs administered by different Federal, State, and local agencies. The Federal Government finances services through Medicaid

and CCS, provides funds for establishing services through neighborhood health centers, maternal and child health, and CCS, and provides funds

for State administration of maternal and child health services. The State

agencies carry out surveillance of child health services and provide some

services through their own and Federal funds: Finally, counties and municipalities provide some planni-ag,, surveillance, and dirc.-ct services on

their own with the assistance of Federal and State funding. Each level of government tenos to see the other levels as being the

source of fragmentation. States may cc.,ip-!:-"o that the Federal regulations

for categorical programs make it inapo, _hem to integrate various programs. Often, however, it is State r- ""!' IS, budgeting provisions, or bureaucratic rivalry which prevents -it. ---ooling of Federal funds and

programs. States may resolve these pzobit...ris very differently. Michigan, for example, integrated the EPSDT screning program with its ongoing Health Department Title V programs. Texas, on the other hand, placed

the EPSDT screening program into the Health Department,' but kept it completely separate from the Title V well-child programs within that same department, a move that was totally unnecessary from the Federal point

of view. A final sotr.ce of adrniai.stiative fragmentation is the allocation of health functions to se, oral different Federal and State agencies. For example, Medicaid, the major public financing program of child health is administered in most States by the social services/welfare departments. 5 4 559
School health may be administered ly.; State or local school boards, and

the departments of agriculture administer nutrition programs. At the State

level, no single agency controls child health planning, the funds to be

allocated, nor the resources to be developed. Fragmentation has several outcomes. First, it has led to the odd

patchwork of present programs in child bestith. With nearly every new

program enacted, a bureaucracy with its own administrative goals and

culture is also created. However, this new bureaucracy then creates a

demand for its own continued existence regardless of need. The entrenchment of these bureaucracies also often makes it desirable when starting

new programs to establish them under independent auspices to give them

a fresh start and avoid the competitive bidding among other agencies. These two processes then lead to more fragmentation rather than less. One

must break the cycle somewhere, but it becomes increasingly difficult as existing programs vie with one another to maintain visibility and solvency. Second, fragmentation can also decrease access because the public

sector payment system is so complex. This has been a particular problem

in the case of maternity care. Private physicians in California were

reportedly reluctant to refer pregnant patients for specialized care because

if they did not perform the delivery, they would not receive any payment for the prenatal care they had provided (4). In California, it was also

noted that virtually zlo intraparturn maternal transfers took place from a

community hospital to a specialized perinatal care regional center, nor did

antenatal referrals for special tests occur within the private sector (77). A third result of fragmentation is the multiplicity of policies that

emanate from three levels of government and from three to four different

age: ties at each level. Not only does it lead to multiplicity of programs, but simple confusion and uncertainty. When fundings are delayed for new

programs (78) or when the method of the administration is changed (79),

policy changes affect all levels of government. Because of the fragmentation of child health policy, State and local

planners fe- child health services have to piece together different kinds of funding fr -m different sources in order to put a program together_ This

results is the usual complaints from the States about the Federal

Government fostering fragmentation, but more often than not the States

themselves also contribute to the sources of this fragmentation through

their bureaucratic structures. Organization and financing affect the degree to which fragmentation

will occur. Policymakers must choose between favoring groups of children

of particular ages, diseases, or geographic areas over others_ The easiest

solution to avoid some fortns of fragmentation is to finance and organize health services for all children. This limits the fragmentation to the

children themselves. However, some fragmentation may nevertheless

persist because a child may still need to see different providers for

different types of care. Nevertheless, a universal method of financing,

which also finances some organization of this complex system, would help

considerably to assist children and their parents through the : of

services to achieve timely and approv- 'ate health care.

560
FACTORS THAT FAVOR CHILD HEATH GOALS DEVELOPMENT AND MINIMIZE FRAGMENTATION

One factor that seems to help public programs to function is the absence of competition from the private sector. For example, Orso ( I 8) noted that on.e health center studied fared well because there were few physicians and no organized health facilities to create opposition or competition. A

similar lack of competition for the patients served by the Denver Health Department and City Hospital facilitated the development of an integrat- ed health and I- ospital service in that city. Oae cannot, of course, look

toward the rapid demise of the private sector as a means to improve public

sector services, but observations do indicate that the competition among private health providers in any area doer, not necessarily mean that they will promote health programs for those sectors of the population

underserved by them. It also seems that the only time public programs have the clear support of private providers is when there is absolutely no

competition. A second factor that influences the success of some public programs is

the ease and low cost of some types of administration. It is easier for a health department to institute a surveillance program to assess the

immunization levels of children in a State and to set up immymization

clinics than it is to establish ongoing service systems. A one-time

surveillance program such as PKU, for example, is much easier to

administer than a system of primary care for groups of children

throughout the State. Therefore, it is not surprising that State health

agencies have frequently focused more on these former types of services

than on the planning and delivery of more general health services. A third factor that works well bringing children into contact with a health system is the use of outreach workers. Whether such people are visiting or public health nurses, health visitors, outreach workers, or whatever, they have shown themselves to be remarkably effective in health prevention and particularly in bringing high-risk children to care. From all the studies it seems evident that there are certain groups of children and

their mothers who will not readily step forward for care or for whom

access to the health system is so difficult that their needs must be met at

home. The access barrier in these cases may not be so much a matter of

finan, es or transportation, but of language or social customs. Even when

all other barriers are down, these barriers will persist for certain groups of parents and children. For these high-risk groups, outreach may be critical

in ensuring receipt of care. One factor that has not been tested in any studies to date is whether programs that use low-level technology and less highly trained personnel may be as effective as high-technology programs and highly trained

personnel in delivering preventive and continuous health services for some groups of people. For example, health visitors, midwives, and childbearing

centers may be as effective in lowering perinatal mortality as the hightechnology regionalized perinatal centers. The later may be efficient only

561

Cr
for high-risk mothers and infants who could be identified early. However, as long as there is no research comparing the two approaches, it is difficult

to identify the most effective methods of organizing such care.

When these and other features are combined in a single health program, they can be extraordinarily successful, as has been the case in Denver during the past 10 years. Denver has developed a citywide integrated

health a.-ad health services department that provides primary and

secondary care in its own clinics and hospitals. The program is directed mainly to the poor, but its 180,000 active registrants, out of a city population of over 600,000, include the working poor as well.11 The

program has integrated the categorically separate Federal and State

programs to provide services in terms of the city's demographic needs. Each person in the system has a single medical record that follows him

from clinic to hospital to clinic again. The question is whether Denver's experience can be replicated else- where. Denver's success can be attributed to a number of factors. Among

the most important has been the existence of an energetic group of enterpreneurs in the Health Department and at the city and State level who were willing and able to integrate available city, State, and Federal funds_ Part of their success lies in their ability consistently to obtain large Federal grants to supplement third-party payments. Denver receives more Federal health funds per capita than most other localities in the country. It is unlikely that other localities receiving comparable funds would be able to achieve the same integrated health services structure as Denver because they might lack other essential elements such as the administrators and political climate necessary to take advantage of such funds. It

would be out of the question for the Federal Government to finance every

locality the same at; 17enver. The Denver :-..xpegience is encouraging, but difficult to replicate t does,

however, demonstrate what can be done given a favorable environment, capable administrators, and sufficient funds. The Denver experience is similar to Title V demonstration projects such as MIC, C&Y, and

intensive neonatal c;_re. They are all operating under optimal conditions with high levels of :financing and resources. Such demonstration projects have shown that good services can be delivered by public programs to

limited groups of people under optimal conditions although they have done little to spread resources to a larger segment of the population. If there is one lesson to be drawn from these experiences, it is that more demonstration projects are not needed. In fact demonstration projects counter the broader goal of equitable access to health sea eices for all children. If States were to be encouraged to apply for such special health grants for demonstration projects, then, very likely those localities that have resczA.rces would get more and those without would get less. By

encouragin; demonstration projects, policymakers reduce the likelihood

that children in all parts of the country would have at least some minimum access to minimum care.

I 'Abraham Kauver. M.D.. interview. September 27. 1919.

562 ;

t _a
OPTIONS FOR CHILD HEALTH POLICY

The preceding discussion would indicate that there is no single, simple, presently available system to implement the four policy goals presented at the beginning of this paper. Existing public programs are more successful in achieving some goals than others. The goals themselves may be

competing, if not conflicting. To achieve any of the goals amcl to avoid

fragmentation, any system must combine methods of organizing, financing, and researching services. These three methods may be discussed

separately, as they are in the options presented below, but they must be

understood to be inextricably linked. Par "..ularly for organizing and

financing, one cannot do one without the other. Some of the options presented can be implemented independently, but others are part of a

system. The strategic question in attempting to implement any of the options is whether to proceed incrementally or to attempt to reform the system all at once. The lessons of the child health programs during the 50 years would

indicate that incremental '-ategy has had some limited success because public child health progr today are demonstrably better than they were. The incremental approach has also led to increased fragmentation with a proliferation of programs so that no one public agency is

responsible for planning, organizing, and financing child health. The

temptation is to proceed incrementally because that is the politic thing to

do. Unfortunately, such an approach may create as many problems as it solves by perpetuating piecemeal approaches to child health_

Organization

(1) Create a continuing governmental administrative unit within State health departments. Its functions, greater than those ofpast State Title V maternal and child health and CCS agencies. would

include:

Surveillance activities such as monitoring of immunization

Identification of children in need. (This is a planning function

that would require continuous epidemiological assessment of needs, both environmental and for personal health services. At present, such functions are more within the domain of the health planning agencies. However, it would be useful to have planning take place in the same agency which is empowered to

establish services.) Monitoring and gathering information on children who

receive public ser.ices Establishment of direct health services where the health

department ascertains need_ (The ability of a State to provide

such services depends s the availability of long-term, predict- able, comprehensive fu,,kling, not simply categorical or demonstration grants.)

563
Monitoring health services received by all children through

inspection of clinics and hospitals and by requiring all

providers to meet minimum performance standards when

reimbursed by third-party payers Reporting to the Federal Government on the planned services,

funds, and implementation to meet children's needs.

The advantages of setting up such an administrative structure are (h )

that it is already partly in place; (2) that it provides a central planning mechanism for maternal and child health; and (3) that information

gathering, planning, and implementation can be carried out by the same

administerin' g agency. Essentially, it is an expansion of the functions of the

Tide V agencies. The disadvantages are (l) that it will necessitate increased

State/Federal investment to estalgish such agencies in every Stat...; (2) that

an agency or subdivision within a health department which is devoted

only to children will conflict with other health programs which serve other

populations; and (3) that needs assessment and monitoring are difficult

and costly to carry out. (2) Establish within the State health departments or in private nonprofit agencies home visitor services for all or any one of the

following functions for all or only high-risk families. Prenatal and per natal care Health education for parents of infants under 1 year Home visits for children at high risk for abuse and neglect Visits to inform parents and children of available care and

how and when to use it

Screening of high-risk infants and children Such services are best carried out when integrated into the State agency

services, but could be carried out by an independent non-profit corporation if such a group worked closely with the State health department and

with the providers of services in the area_ At present, the EPSDT program,

visiting nurse associations, public health nurses, and neighborhood health

centers to greater or lesser degrees carry out some of these functions.

However, these services arc currently program dependent, not population

dependent and therefore create a fragmented system. Outreach services

could be financed either through per capita grants to the agencies, or on a

fee-for-service basis.

(3) Substitute, where possible, low technology care for more costly

high - technology care, such as midwives rather than obstetricians

for routine prenatal and perinatal care. If sufficient preventive

services of this kind are established, the need for the hightechnology regionalized perinatal services may be minimized.

However, such a strategy should be coupled with a continuing

recognition of the need to provide specialized care as a backup

for preventive failures. (4) Establish through Federal grants to the States more health

centers in n- edically underserved areas. The advantage of organizing these through the States rather than through local

auspices is that it allows the States to select priorities_ However,

564

5 t;
such freedom should be coupled with a . quirement for minimum services that must be available in all parts of the State. (5) Establish through Federal grants and/or loans to the States more

health maintenance organizations. This is a long range recom- mendation since it will be many years before HMOs are able to

meet the needs of many children in the United States. To choose

this option would be a recognition of the fact that HMOs may be mor:: effective providers of comprehensive health services to

children than other sources such as private physicians or

neighborhood health centers.

Financing

All the proposals require the type financing that cannot be provided

solely by payments for the services themselves. The co$ .s of these services could be met by an insurance system that provides payment to the providers, and to the administration and establishment of services. Payments could also be funded through the present mechanism of Federal grants for the administration and establishment of services and third-party

financing (insurance, Medicaid) for the services themselves. Any financing system that does not take into account the need to

finance the organization of services will fail to provide for large segments of the child population. It would be futile to establish a national insurance

system for services that are simply not available. Some part of the

financing must therefore be directed toward organization. Whether this is done by allocating part of the insurance funds or by setting up separate

funds should be considered.

(1) Establish a national child health service wherein the Federal Government out of general revenues pays for both the organization of child health services and the services themselves through

capitation, fee-for-service, or salary to the provider. The advantage of this option is that it avoids some of the fragmentation of primary and secondary care services. The disadvantage is that it requires so many changes in the present health system that it may not be feasible. (2) Establish a compulsory national insurance program for children

up to iLe age of 18. The program would be funded by premiums paid by parents and employers, and by general revenues for

those below a certain income. These insurance funds would pay not only for preventive care, routine treatment, and catastrophic

services for children, but also for the establishment of services in underserved areas and for State administration. Home visitors

should be considered as part of these additional services. The premiums for such a program could be collected either by the Federal Government or by private insurance agencies with the

recognition that if the latter group administers the premiums, additional fragmentation may occur with an additional administrative layer. This program would allow for both administration of services and payment for them. Because it would cover all

565
children regardless of financial and categorical eligibility requirements it w---uld avoid much of the fragmentation that exists

today. Having the financing mechanism uniform it would also

avoid the fragmentation that occurs when a single provider has

to big: more than one insuror. Moreover, it -ould provide a

check on duplicate or incomplete billings. Because all care would

be financed by the same source, it would also mitigate the differences between private and public care, and provide State

health agencies with a means for monitoring care. (3) Maintain the financing system as is with service financing

through Medicaid, grants for the establishment of services

through Title V and other Public Health Service grants, and

catastrophic financing for children through the CCS program.

This is the fragmented system that was described previously.

(4) Add a catastrophic insurance program for all children This

would in fact be an extension of the financing side of the -.:CS

program without overseeing the necessary services or coo? ,ation of care. This option would not mitigate most 01 the

problems in the system and might favor the use of high- rather

than low-cost technology and care.

Research

As the earlier review of the literature indicated, there are few good

studies on the effect of organization and financing the delivery of child

health services. Even programs established as demonstration projects,

such as C&Y and MIC, were not effectively evaluated. Other programs

that have existed for more than 40 years have never been examined

carefully. Despite* Government intervention in child health for over 40 years,

policyrnakers have little useful information on which to plan future

programs. Whether programs were run by health departments, schools,

hospitals, or HMOs, knowledge of their effectiveness is limited. Therefore,

if future policymakers are to be able to build on past experience, any

program should have, as a major component, evaluative research of the

effect of the organization and financing on the delivery of services. This is

not so much an option as a necessity. Moreover, the studies should be of

ongoing programs, services, and organization, not limited to demonstration projects operated under optimal conditions.

Following are some needs to be addressed in future research:

Are comprehensive care services, however defined, necessary to

promote child health? Can adequate care be delivered when the delivery of services is

fragmented? What are the minimum adequate standards for preventive health

services?

What modes of organization most effectively:

reach high-risk children for preventive services?

promote comprehensive and continuous care"

566
provide high access levels to care? promote adequate utilization for high-risk children?

Is overutilization ever a problem in child hez.lth? Are low-technology labor intensive programs (midwives, health visitors) more or less effective dual high-technology programs

(physicians, equipment) for certain types of care? What is the minimum data set needed by State health departments

to adequately plan statewide primary and secondary care for

mothers and children?

What is the minimum data sc 'ceded by State health departments

to monitor and maintain accou. .bility of health care providers?

What is the effectiveness of regionalization programs?

CONCLUSION

All public and private health policy fragments care in some way. To minimize this fragmentation, the public sector must be given funds to

administer and organize health services. This often requires the establish- ment of administrative structures, preferably at the State level. To achieve

continuity of care, prevention, adequate access, and information systems, and to minimize fragmentation, it is not -sufficient simply to pay for services. A system that only pays for services but does not organize them

will do little to achieve the goals that have long been a part of Fede. health policyand it will do so at high cost. The options presented in this paper offer some ways of reducing

fragmentation.. A universally financed and State-organized program of health care for all children would achieve these goals and _mitigate many

of the problems arising from conflicting goals. However, if an incremental

plan is adopted to carry out such a policy, or if previous programs are built on piecemeal there will be a risk of continued fragmentation.

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; 570
THE SPECIAL HEALTH-MENTAL

HEALTH NEEDS OF CHILDREN

b:.

LARRY B. SumElt, M.D.

HISTORY OF THE HEALTH-MENTAL HEALTH

MOVEMENT IN THE UNITED STATES'

During the early history of this country, mental health activities as we know them today did not exist. Resources for children and adults were undifferentiated; demoniacal possession was the chief explanation of most forms of mental disorder; and the scourge, the rack, the stake, and the gallows were the common methods of treatment It was not until the 1840's and 1850's, due mainly to the efforts of Dorothea Dix, that the country was stimulated into constructive action. The result was the

establishment of a State hospital system as we know it today. However, the State hospital was also used, like jails, as the last resort for children who were severely disturbed, and children and adults were still placed

together on the same wards. The provisions of the British Poor Law of 1601 were brought to America 'Sy the colonists and determined in a large measure what was done for dependent children for the next three centuries. This law and its

successors provided that local governments might set destitute children to

work, apprentice them to learn a trade, auction them off to some person who would agree to care for them, or send them to the poorhouse. The full concept of the Poor Law was not finally abandoned by some States until the passage of the Social Security Act in 1935. This act provided for a modest level of financial aid to children in families that had no means of

support_ Efforts to limit the hours and types of employment of minors started in the nineteenth century but did not have an impact until the

enactment of the Pair Labor Standards Act in 1900. Compulsory school

attendance began in the mid-eighteenth century but only began to be universally enforced in the 1930's. It was not until 1899 that the first juvenile court was created in this country by act of the llinois legislature. Initially, juvenile court judges could only dismiss a case or impose a sentence. Later, probation for young offenders was added, allowing the judge to turn the child over to a

AsacciUte Director. National Institute of Mental Health_

'The material in this section cornea partly from a review' by Shore and Mannino ( !).

571
separate field led to the establishment of the National Institute of Mental Health in 1948, 2 years after the National Mental Health Act was signed

by President Truman. Thus, a national commitment to mental health was generated, with national resources to study and improve the mental health of the Nation. With this rising wave of interest ir mental health, the joint Commission on Mental Illness and Health was established by Congress in

1955 to study and report on the status of mental health care. The summary

report and its accompanying volumes mobilized the Nation and challenged the Government to accept its involvement in changing and

improving the nature and quality of mental health treatment services, especially in the State mental hospitals which had been the only major publicly financed facility for the mentally ill for over a century. The Joint Commission report also led to the passage of the Community Mental Health Centers Act in 1963. This act and its subsequent amendments committed the Federat Government to a large-scale service program in mental health to be implemented through Federal participation in

regional, State, and local efforts, both public and private. Each community-based center was-to-develop outpatient, inpatient, emergency, partial hospitalization, and consultation-education services for all individuals within the assigned catchment area. By 1976, 548 centers were in

existence. These centers treated 1,877,676 persons, almost 25 percent of all mental health patients seen (2-4). Despite this turn of events, however, mental health services for children

and youths still remained a low priority and children's services were not recognized as a distinct area requiring special training and often more

elaborate funding. The assassination of President Kennedy by someone who had psychiat- ric examination as a child but was never treated stimulated discussion

among the Nation's leaders and prompted new national interest and

concern about the mental health of children. Congress funded the Joint Commission on the Mental Health of Children in 1965 to review the

dimensions of the mental health needs of children and to recommend

strategies, directions, and programs. In 1969, the Commission published a number of the Task Force reports, as well as its summary volume entitled

"Crisis in Child Mental Health" (5, 6), which pleaded for a large-scale national mental health program for children to include child advocacy as a major ingredient. The report, the most comprehensive of its kind in the history of the United States on the state of children's emotional and social health, struggled with, but did not resolve, the basic issues of how child mental health could be conceptualized and what priorities should be set. What was highlighted instead was the struggle between trea:ment and prevention, clinical and social approaches, motivational dynamic ap- proaches and learning approaches, and the medical model as core Tasted with the education or the public health model. However, one of the major results of the Commission's report was the visibility given to children's mental health services, a factor that played a

role in amending the Community Mental Health Centers Act and

allocating $ 10 million in 1972 to implement it. This amendment was

indeed a historical landmark as it provided for the first time in U.S. history Federal money specifically for mental health services for children

573
ages 0-17. The program was to be consistent with the developing

community mental health principles of coordination, comprehensiveness, and continuity of care, and through local community orientation was to

include a wide range of services such as outpatient, inpatient, partial

hospitalization, emergency services, and consultation and education. Sixty

programs were funded. Grants for these purposes were phased out in 1977.

This action posed a threat to children's services. In 1968, the Omnibus Crime Control and Safe Streets Act created and

funded the Law Enforcement Assistance Administration (LEAA), which

established youth service bureaus to handle delinquent and nondelinquent

youths referred by police, schools, and other sources. The aim of the

Youth Service Bureau program is ix) prevent juvenile crime and to keep

young people out of the correctional system. In 1969 the Office of Child Development was formed in an effort to coordinate and consolidate all

categorical children's programs in the Department of Health, Education,

and Welfare (DHEW). In addition, the Medicare and Medicaid Acts were

expanded to include mental health services. The Head Start program

included mental health as one type ofservice to meet the requirement tn. 10 percent of the children in Head Start be handicapped. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) was made

mandatory by Congress under Title XIX of the Medicaid Act and

includes a developmental assessment. Because of advances in the medical field, many of the infectious and

other acute medical problems are now preventable or responsive to

treatment. Prenatal and perinatal complications and illnesses have been

lessened and approaches to treatment are available. Many children with

chronic diseases are living longer, possibly resulting in a new set of

complex, expensive, dine-consuming problems. The practicing physician

spends less time on classical medical problems of children and mate woe

with children who have school, learning, and behavioral problems, after. called "the new morbidity" (7), as well as with health promotional and

prevention activities (8). This concern with the mental health aspects of the medical care of

children has increased over the last three decades as increasing knowledge

developed on the close interrelationships between psychological and

physical processes. The relationships between these physical and psychological processes were found to be even closer with children than with

adults. For instance, physical growth and development can be impaired

by psychosocial stress and prenatal growth is dependent on the mother's

psychological as well as physical condition. Psychological conflicts and

stress produce physical and physiological disorders, and these disorders

have marked consequences on the emotional development of the child and

on his or her relationships within the family. As pediatrics evolved out of general medicine to address the special

physical needs of developing individuals, child psychiatry developed out

of general psychiatry to address the special psychological needs of

developing individuals. Parallel to this effort, the other mental health

disciplines grew and developed subspecialty groups concerned with the

special needs of children.

574 5 7f)
Child psychiatry began as a clinical not an academic subspecialty and

developed in the early years of this century in response to a clear need for clinical services for delinquent youths. Early training was carried out in court-connected clinics and in the Common.vtalth Fund supported-- demonstration guidance clinics of the early 1920's. It was in these child

guidance clinics that child psychiatry joined with psychology and social work to form interdisciplinary teams. The American Academy of Child Psychiatry- was established in 1953. The American Board of Psychiatry

and Neurology officially recognized child psychiatry as a subspecialty in

1959. Because child psychology is recognized by the field of medicine as a

subspecialty within general psychiatry, the training programs moved away

from the community child guidance clinics into the medical schools and

academic centers, where the fundamental task was not only service but also was teaching, research, and service. In medical schools, child psychiatry was free, at least temporarily, from

the restraints imposed by service needs and was stimulated by integration

into departments of psychiatry, by its association with pediatrics and

other clinical departments; and-by the availability of research opportunities.A favorite quote of the early 1960's was, "Pediatrics and Child

Psychiatry have courted each other for so long, it's time they got married." This marriage may not yet be a legal reality, but they did begin to live

together in the late 1960'c and the 1970's. Child psychiatrists began to work in pediatric units and to collaborate in research and teaching. Clinical psychology developed as a specialty within psychology depart- ments after World War II. This specialty was primarily academic. Within

this academic specialty, students have the same language and research

requirements needed for other academic Ph.D. programs. During the 1970's some clinical psychologists expressed concern with the academic model and felt that it was not producing trained psychologists to meet public needs and to provide clinical service. In response some universities as well as some free-standing schools have established a D.Psy. degree, for which training is primarily clinical with minimal or no research requirements.

Although a few social work programs were in existence before World War II, most developed in the 1940's and 1950's. Most graduates worked

in State hospitals or community agencies. As a mental health profession, social work flourished with the development of the community mental health centers during the late 1960's and the 1970's. Psychiatric nursing did not develop until after World War IL The majority of psychiatric nurses have a diploma or a bachelor's degree in

nursing plus experience working in a psychiatric setting. In the late 1940's master's degree and, later, doctorate degree programs in psychiatric or mental health nursing developed. The majority of graduates from these programs are in teaching or supervisory positions. The development of the community mental health center movement of

the 1960's created the bridge that allowed child psychiatry to expand its close identity with the other mental health professionals and major social

issues as well as to continue its identity as a medical specialty in a medical

575
environment. This duel identity has been the major strength and, recently, has been the major focus of child psychiatry. Other mental health

professionals question the uniqueness and clinical roles assigned to child

psychiatry from one perspective and the primary care physicians do the

same from another perspective. The areas of knowledge and skills in child

psychiatry in the biopsychosocial aspects of children and adolescents are

shared by at least one other profession; however, it is the sum of these

parts that is unique and not shared with any other medical or mental

health profession.

SCOPE OF HEALTH-MENTAL HEALTH PROBLEMS

The Task Force on Pediatric Education (8) noted that pediatricians

must be trained to work with children identified by the Task Force as

subject to great health risks; that is, higher morbidity and mortality rates. Each of the groups identified is equally at risk for mental illness.

Specifically, the Task Force noted the following: Children from low-income families. There are 10.2 million lowincome children under age 18; about one in six live in poverty.

The environmental and social stresses of such families contribute

to increased mental health and substance abuse problems These

children usually have difficult access to health and mental health

services. Children with handicaps. More than 7 million of such children

are under age 20; less than half are adequately served by programs

that help them cope with their problems. The Education for All Handicapped Act (P.L. 94-142) may increase the awareness of

such children before it results in more comprehensive healthmental health services.

Foster children. In 1977 approximately 504,000 children were in

foster care; over 395,000 of them were in foster homes, the rest

were in institutional or group home care. Half had lived in more

than one foster home. Minimal or nonexistent preventive mental

health or anticipatory guidance programs were available for the

child, the natural parent(s), or the foster parent(s). Minimal or no

training was provided to foster cart case workers. Inc:Autionalized mentally retarded youths. Over 100,000 children live in institutions for the mentally retarded. They represent

50 percent of the populations of these institutions.

Criminany detained youths_ Every day 20,000 youths are placed

in some criminal detention center. Adolescents are involved in

more than half of all the serious crimes reported in the United

States. Offspring of high-risk mothers. Pregnant women with no prenatal care or who are malnourished are highly likely to produce low- birth-weight infants. These babies are at higher risk for having

varying types of central nervous system dysfunction and resultant

school and emotional problems. Low-birth-weight infants occur

more commonly among teenage mothers. `Al o, both the young

mother and her child are likely to have emotional problems.

576 5 S1
Single - parent children. Over 9 million children now live with

single-parent families. About 15 percent of all children under 3

live with only one parent; 40 percent of these parents maintain a

full-time job. Of all children in single-parent families headed by a

woman, 51.5 percent are living below the poverty level. Most of

these children and families are at risk for emotional problems and

are in need of anticipatory guidance and preventive mental health

interventions. Day care facilities are increasingly available but are

usually not designed or staffed to meet their special needs. Children of racial minorities..Approximately 10 million black, Mexican-American, Puerto Rican, and American Indian children

are under age 18. These children are more likely than nonminority

children to experience poverty and are at risk for both medical and mental health problems. They are also least likely to have

access to medical and mental health services.

Children of migrant workers. The combination of low and unpredictable incomes, poor housing, long hours of labor, morbidity, and compromised education results in a high risk for health and mental health problems Most of these children are

underfed, undereducated, medically neglected, and unavailable

for health or mental health services.

Another group of children needing special attention are those in day

care centers. It is predicted that by 1990 only one in four married women will be a full-time housewife and mother. The number of preschool children who have working mothers is expected to increase from 6.4 to

10.5 million, producing a critical strain on day care facilities. The Federal Government currently spends nearly $2 billion a year on day care. Although standards regulating the quality of federally funded day care

have been in effect since 1968, they have been virtually unenforced. New

Federal standards to protect the quality of care these children receive have been developed and currently await approval by the Secretary of the Department of Health and Human Services (DHHS). These standards

require care givers to receive some basic training and impose a maximum

limit on the number of children allowed in a group as well as on the ratio

of children to caregivers. Beyond these minimal standards, additional assurance of health and mental health care should be specified. One study found that between 15 and 20 percent of the United States population has a mental disorder during any given year (9). The point prevalence rate was at least 15 percent with annual prevalence rates of over 20 percent of the population per year. Of these, 20 percent were seen

in the specialty mental health sector, and 20 percent were not seen. Over

60 percent of total persons affected by emotional and mental disorders were estimated to have had contact exclusively with general medical professionals. These findings were similar to previous studies. Although

the Regier and Goldberg study does not identify children, it appears that

the figures were as accurate for children as for adults. Shepherd et al. (10) found that among those patients identified by general medical physicians as having a mental disorder, 67 percent received some form of treatment from the physician, usually

advice-medication. Another 5 percent were referred for specialty mental

577
health care and 28 percent were untreated. The role of the primary care

physician in recognizing and managing health-mental health issues is

critical.

What types of children with emotional and mental disorders are seen by

the primary care physician? Starfield et a/. (11) studied this question at 10

different clinical settings and found that the percent of individual children

with a wide variety of psychosocial problems varied from 0.6 to 84.4

percent among the facilities. In contrast, the proportion ofchildren having

a psychosomatic diagnosis varied very little among the facilities, from 5.7

to 10.8 percent. The wide differeace in recognition of psychosocial

problems among practitioners was partly felt to be the result of a medical

education that emphasized organic rather than mental or social problems

and partly to be the result of a lack of sensitivity by the practitioners to

behavioral rather than somatic complaints. The study also found that the

proportion of visits associated with psychosocial diagnoses was consistently less than half the proportion of children with these problems, suggesting

that attention to these problems leads to fewer than average visits for

other problems. The data showed that individuals with unresolved

psychosocial problems made more visits for nonpsychosocial diagnoses

than was expected. This study suggests why routinely collected data (such as in the

National Ambulatory Medical Care Survey) provide much lower estimates for psychosocial morbidity than data collected in medical settings.

The Starfield et a/. study ( 11) found that at least 5 percent and as many

as 30 percent or more of the children seen had psychosocial problems.

Other studies show a variation of from 3.9 t.." 10.1 percent in the diagnosis

of child mental disoraers (12-14). In each of these studies the utilization

of the general health services was 2-4 times as great for children with

diagnosed mental disorders as for those without.

Thus, studies of adult populations show that between 15 and 20 percent

have a mental disorder during any given year. Studies of children seen in

primary care settings suggest that between 5 and 30 percent will have a

mental disorder. Studies of all ages show that individuals with mental

disorders utilize health care services for physical problems at s much

higher rate than those without mental disorders.

Approximately 60,000 children and youths in institutions are chronically mentally M. With the Federal and State efforts to deinstitutionalize

patients to less restrictive community facilities, more of these children will

be seen by primary care physicians for both their health and mental health

needs.

As the "search and find" programs required by the Education for All

Handicapped Act (P.L. 94-142) expands in each State, increasing

numbers of children with health and mental health problems will be

identified. Children will enter the primary care settings who might

normally have not been seen_

in summary, the number of children with health-mental health

problems is high. The probability is that a greater number of these

children will be recognized in the future. The mental health professionals

578 3
should accept the lead in treating these children with major psychiatric problems. Primary care physicians will have to accept the lead in

recognizing and treating many of the children with "the new morbidity."

SPECIFIC HEALTHMENTAL HEALTH

CLINICAL ISSUES

Maternal Care

In addition to the physical aspects of medical care for pregnant women, anticipatory guidance and other support should be provided and should

take into consideration the expectations about pregnancy and any

ambivalence about the parental role. Worries and fears should be heard

and discussed.

Maternal or neonate physical stress or pathology are recognized and

treated by the obstetrician or pediatrician. Anxiety, depression, or postpartum depression as well as less obvious clinical evidence of emotional or somatic stress must also be recognized. Ideally such support should continue following delivery, and the family physician or pediatrician must establish a trusting relationship and kelp

allay normal fears and anxieties regarding the child's and the mother's health. Possible future problems with parenting might be apparent during

the perinatal time. If special neonatal intensive care is needed because of birth weight or medical complications, special attention must be paid to

the maternal-infant relationship and bonding at this time.

Gee ersd Prevention Efforts During Ambulatory Care

During well-child contacts, the physical and cognitive development of

the child is routinely evaluated. Anticipatory guidance or direct counseling and health promotion is readily offered on physical problems such as skin rash, weight, and feet positioning. It is equally important to assess

stages of psychosocial development and to offer anticipatory guidance or counseling. Problems with relating, eating, sleeping, crying, and body

activity might be a reflection of a physical or a psychological problem. Both the physical and the psychological factors must be considered, recognized, and treated. Evidence of more serious psychopathology of parent or child must be recognized and treated, and mental health must be promoted. Primary care physicians must be as aware of and trained to respond to

psychological prevention methods as they are to general medical prevention methods. A few examples are: Primary Prevention Medical: Immunization, fluoridation of water supply; seat belts

in cars

S 4 579
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The physician must be aware of the psychological stress on the child

produced by illness as well as the stress often experienced by other family members. With such AWILIIMCSS, preventive efforts and guidance can be offered. The psychological stresses experienced by a child with a medical

=Tand the secondary stresses experienced in the family are best

ed by noting the reactions of such children to hospitalization. The

responses to separation from family and home, to medical and surgical procedures, and to the possible experience discomfort or pain vary with

age but are all too often predictably present (15, 16). Several studies noted that following hospitalization children might continue to respond for weeks to the stresses experienced during hospital care (17, 18). These responses include general anxiety, regression to earlier behaviors, increased separation anxiety, sleep and eating problems, aggression toward authority, and apathy and withdrawal. Therefore, it is good preventive healthmental healthcare to avoid hospitalization if at all possible If a child must be hospitalized, the anticipated stresses must be minimized. If evidence of psychological or family stress is noted, clinical interventions a needed. During the past 20 years general mental health principles have been

integrated slowly into pediatric settings (19). Hospitals have incorporated

some of the essential elements; however, few have planned, organized, and

implemented a total, integrated program of medical and emotional care. Shore and Goldston (20) emphasize four major principles to be consid- ered in minimizing emotional stress: (1) Hospitalization should be avoided if possible. Recent advances

in medical care permit more opportunities for outpatient and home care. (Unfortunately, Federal and current third-party models of coverage encourage hospital care instead of ambula

tory care.) (2) Whenever possible children should be prepared for hospitalization. Total education programs (e.g., school class visits to

hospitals and hospital personnel sessions in the community) can

include preparation for imminent admission. (3) When hospitalization must occur, it should oe as brief as possible. Increasing ambulatory care facilities plus parent training can decrease the length of stay. (Again, most Federal and

third-party plans encourage the use of the hospital treatment phase.) (4) During hospitalization certain needs must be met to assist the

child and family in dealing with the experience. Facilities for parents to stay overnight Maintenance of contacts with the family as much as possible during the as-I-ministration of medical and surgical procedures Staff training to explain to the children and their families what is happening in a constructive, understandable manner

581

5 s'
An educational prugrain that can continue the child's formal

learning while in the hospital The ability to express and handle normal anxieties through

efforts such as providing opportunities to translate passivity

into activity and to use play objects toward mastery of the

situation

Playrooms with trained personnel to permit free play and to

help with fantasies and fears The opportunity to bring objects from home to which a child is

attached and to have them available when needed

If a child must be hospitalized, part of the postdischarge medical or

surgical followup should include questions relating to emotional and

social functioning. Evidence of residual emotional stress should be

handled. Ignoring the emotional sequelac of hospitalization could be just

as harmful to future growth and development as igno :ng the physical

sequelae.

Chronic Medical Problems

A chronic medical illness creates stress for the individual and the

family. Special coping skills are needed. The stresses are not just related to

the specific problem (e.g., malaise, pain, or other physical symptoms).

They are related to the frequent hospital admissions and the treatment

procedures (medical and surgical), the changes in the emotional climate of the family, and the possible limitations on peer and other social

interactions. Also, stress factors can relate to a specific chronic illness; for

example, a child with a seizure disorder will fear loss of consciousness or

uncontrollable strange behavior. Children with serious respiratory diseases

such as asthma may have a fear of suffocation. The child with cystic

fibrosis may have a similar fear in addition to the need to cope with such

embarrassing symptoms as flatulence and stool odor. Hemophiliac

children must restrict their behavior and fear injury. Children with chronic

renal disease must handle frequent hemodialysis, kidney transplantation,

and the sic.: effects of the immunosuppressive drugs. The child with a

chronic heart disease might have the reverse problem; he or she may have

no symptoms. This child, therefore, will resist the need for restrictions or

extensive workups. For some illnesses, the treatment results in additional

problems such as pain, physical limitations, or hair loss. Some forms of

treatment create new disabilities: for example, radiation used in leukemia

can produce brain damage with resulting learning disabilities in school.

The child with a serious chronic disease must also cope with threats of

exacerbation,. lasting physical impairment, and fear of impending death or

a known shortened life expectancy. Some children feel that they are a

burden to their family and others. The mounting medical expenses and the

interference of the illness on school, peer activities, or future adult

performance add to this stress. Each stage of psychological, social, and intellectual development

changes the impact of the illness on personality development, family

functioning, and the ability to adapt. Thus, awareness of and support for

582

diabetics and their families. Despite the fact that.improved. understanding

leads to improved care and outcome, accessible and well-designed

education programs are lacking. Emot:onal stress or problems can lead to noncompliance with the

regimen by omitting insulin injections, falsifying urine test reports, eating

indiscriminately, not exercising, or not keeping appointments. Early

education and preventive psychological counseling can MilliTT1r7e such

problems. Unless the behaviors related to noncompliance are handled,

increased crises, the need for heightened medical management, hospitalization, and possibly, other complicat....Jns will arise.

The effect of stress and noncoping on physical functioning illustrates another health-mental health relationship with diabetes through a generally accepted model of actica. Stress, via the automatic nervous

system mediates the release of catecholamines (epinephrine, norepinephrine). These catecholarrines inhibit the actions of insulin by suppressing

the release of insulin from pancreatic beta cells and by antagonizing the

specific peripheral metabolic effects of insulin. Both of these factors result

in an increased rate of carbohydrate (glycogen) breakdown. In addition,

they increase blood sugar by direct stimulation of the liver to break down

carbohydrates (hepatic glycogenolysis) and to produce new sugar (gluconeogenesis). Thus, stress leads to an increase in catecholamines which

decreases insulin release, increases peripheral insulin antagonism, and

increases glucose production by the liver, all of which result in an

increased blood glucose level. Catecholamines also favor the breakdown

of fats (lipolysis) with an increase in free fatty acids and ketones. The

combination of increased blood glucose, free fatty acids, and ketones can

result in diabetic decompensation. When treating children with chronic medical diseases, the professional

staff must provide early education, anticipatory guidance, and other

preventive efforts for the child and family. They must be as astute in

recognizing and treating early signs of psychological dysfunction as they

are in recognizing and treating the early signs of physical dysfunction.

Without such a comprehensive awareness and treatment approach, an

increasing possibility of noncompliance and major social or psychological

problems with the child and the family occurs. Unmanaged, the emotional

and social problems that develop might become more restrictive and

uncontrollable than the underlying chronic illness.

Chronic Psychiatric Problems

Approximately 60,000 chronically mentally ill children live in institutions. Current data do not show the number living at home. Many, if not

most, of the chronically mentally ill children are now institutionalized in

State and county hospitals or in othc public facilities; a few are in private

hospitals and institutions. Some children also receive limited health or

mental health care; however, complete data are not presently available on

these institutionalized children. What is known is that children with

584
organic brain syndrome, childhood psychoses, and mental retardation with psychosis are among those who are institutionalized. As noted previously, the national policy favors deinstitutionalization with a shift toward community-based, ambulatory care. _ Thus, an increasing number of chronically mentally ill children will be seen by health care professionals. For some, the primary care professional will have full responsibility. Ideally, a mental health professional will share these responsibilities by accepting the primary responsibility for the mental health care while the primary care physician will provide the medical and health promotional care.

Primary care physicians will need additional areas of knowledge and skills to help these children and their families, and to function as consultants to educational and rehabilitation programs. Presently, they are likely to use tranquilizers or other psychotrophic drugs or to design behavioral management programs. Because chronically mentally ill children may have difficulty communicating, physicians must perform rigorous diagnoses to differentiate between physical illness, general somatic complaints, and somatized psychological problems. Management of these patients takes considerable time, some of which is spent consulting with the school, community agencies, and mental health profzsionaLs. Part of this time will be nonincome producing. For primary

care ,physicians to handle chronically mentally ill children, they will have to mceive additional preparation either during their training or continuing education curricula, and reimbursement systems for mental health

services will have to be changed.

THE CURRENT SERVICE DELIVERY MODEL

Primary Care

Current medical care in the United States is centered on the concept of primary -care_ Primary care physicians include general practitioncrs and

family physicians (21.5 percent of all physicians), internists (15.4 percent), and pediatricians (6.4 percent). Thus, most of this care for children will be provided by the general practitioner or family physician. Because the physician is contacted first, the primary care physician encounters a variety of complaints ("including psychological ones) and provides the main or sole services for many of them. Ideally, the primary care physician should Serve as the entry, screening, and referral point within the larger personal health care system

Provide a full range of the basic health care services necessary to preserve health, prevent disease, and treat common illnesses and

disabilities

Provide the support for patients and their families in times of

trouble or crises which are associated with illness

Assume responsibility for the management and coordination of health services throughout the entire care process

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5.9
In reality, the primary care medical delivery system in the United States

is a "nonsystem." Contrary to the British National Health Service and

other European systems with vile entry point for care (the general

practitioner), residents of the United States have several entry points

including private physicians, neighborhood health centers, prepaid health

care systems, and emergency rooms. Americans may seek specialty care

directly without being referred by a primary care physician

The delivery of mental health care in the United States also occurs in a

variety of setting-2. As noted previously, Reer and Goldberg (9)

estimated that 60 percent of those with a mental disorder were seen in a

general medical setting. The e thers were seen in community mental health

centers and other public or private ambulatory or hospital facilities.

This statistic raises questions as to whether the primary care physicians

knfw how to recog-aiz.e and diagnose children with emotional problems or

whether they arc trained and able to do so.

Most of the studies on these questions do not distinguish between adult

and child patients (21). However, the work of the Task Force on Pediatric

Education (8) suggests that the general studies are as true for pediatricians

as they are for other primary care professionals. Surveys of primary care physicians suggest that they do not feel they

were adequately trained to recognize, diagnose, or treat patients with

mental disorders or the emotional aspects of physical disorders (11). In

two American surveys, 70 percent of primasy care physicians preferred to

refer patients to a mental health professional instead of managing them

(4).Several surveys (4), including one of pediatricians, have shown that (I)

many primary care physicians lack interest in psychological problems and

prefer to focus on somatic issues, (2) formal psychotherapy is difficult

within the structure and environment of a primary care practice, (3) time

is insufficient for psychological explorationintervention, and (4) the

financial reimbursement systems do not adequately cover the time needed

for psychological services by other than certain mental health professionals.General health and primary health care physicians do not recognize or

diagnose some mental disorders an either do not or inadequately treat

others. Several studies of caseloads of primary care physicians show that

about 15 percent of patients seen are recognized as having a mental

disorder; however, where other studies suggest that when a standardized

psychiatric interview of patients is added, 27 percent of the patients are

found to have such problems. A National Ambulatory Medical Care Survey (4) showed that in 67

percent of the patient visits that resulted in a psychiatric diagnosis,

tranquilizers or other medications were prescribed; these studies included

children. Primary care physicians are less likely to differentiate length of

treatment among various psychiatric conditions. Patients with psychiatric

diagnoses were seen once or twice a year regardless of dia. gaosis or

indicated treatment. Current data suggest that as primary care physicians become better

skilled in mental health diagnosis they find more cases and the number of

referrals to mental health professionals increases rather than decreases It

586 591
is possible that the trend toward primary and general health care

- providers meeting the mental health needs of the country has led not only

to uneven care but also to an increase rather than a decrease in the need

for psychiatrists and other mental health professionals.

Mental Health Care

In many parts of the country, the type of mental health care for children depends on available resources instead of on the ideal clinical interven- tion- If children with emotional problems can function in school, the family, and the community, care can be provided in a local outpatient clinic. If a child cannot function in one of these settings and no

comprehensive service system exists, that child might have to enter a 24- hour hospital or residential treatment program. Discharge from these programs often has to be delayed until the child is able to function in the community. Furthermore, residential care is often provided away from the family and because minimal family therapy is offered the child might return to the same dysfunctional etivironment he or she left.

A comprehensive system of care for children would include outpatient services, partial hospitalization programs, short-stay community-based

inpatient units, and longer stay hospital or residential care facilities. If a child is having difficulty functioning in a specific environment he or she could be admitted to a day hospital to replace school, a night hospital to replace the family, or an afternoon program to replace the community. Also, many children could be kept in inpatient units only as long as needed and would them return into a partial hospitalization setting. Without a comprehensive system, children are treated as outpatients or as inpatients. A child who could have been treated less intensively and

expensively might be hospitalized and that stay might be for a longer period than is necessary. Juvenile court judges report that their decision regarding placement is, at times, based more on the availability of resources than on the needs of the juvenile offender. Surveys of juvenile offenders in prisons show that some are mentally retarded, psychotic, or have a severe character disorder. They b,,came part of the juvenile justice system because they had to be removed from their family-community and mental health facilities were not available for them.

A comprehensive system of care must be available for children with emotional problems. Few partial hospitalization programs exist because the current third-party and Federal reimbursement plans do not pay adequately for such services. The reimbursement system encourages outpatient or inpatient care only.

Other Service Delivery Systems

Some children in the educational system have physical and mental health problems, including those with chronic health and mild or severe

587
emotional problems. Presently, the Education for Al the Handicapped

legislation requires a comprehensive program for each of these children in

an environment as normal as possible. However, no assurances are given

that the physical and mental health needs will be met. Few programs are

designed to prepare normal children to accept and understand the

handicapped children in their classes. Training to prepare teachers for

their new responsibilities is also lacking_

As noted previously, many children with health-mental health problems

are in the social and welfare systems as foster or other alternative

placements. Not all receive adequate health or mental health care. Other

youths are in the various levels of the justice sytem, often with minimal

services. Although the regulations for Head Start, Home Start, and Follow

Through programs require physical and mental health screening and

counseling, these services either are often not available or are fragmented_

Furthermore, day care programs vary greatly in their ability to provide

more than babysitting services and few have backup health or mental

health support services_

In- most areas, programs are not unified in a comprehensive physical

and mental health care system and services are fragmented_ Physical and

mental health services for children are scattered throughout many Federal

agencies including the Departments of Agriculture, Labor, Commerce,

Justice, Education, and Interior with the Department of Health and

Human Services taking the lead. White House Child Health Conference

reports since the 1930's have suggested the need for a child advocate to

ensure comprehensive physical and mental nealth care, but one still does

not exist. The President's Commission on Mental Health (22) noted the

variety of Federal programs that provide screening and followup care for

the health and education of infants and children and emphasized the

importance of physical and mental health linkages. The Commission

recommerded that "The Secretary of Health, Education, and Welfare

(now HHS) review existing. Federal programs that pertain to health and

mental health services for infants and children and design a coordinated

national plan to make available comprehensive services for all children?'

The Mental Health Systems Act

Based on the recommendations of the President's Commission on

Mental Health, the Department of Health and Human Services (then the

Department of Health, Education, and_Welfare) developed the Administration's Mental Health Systems Act which was sent to the Congress by

tile! President on May 15, 1979, and signed into law in October 1980.

The Community Mental Health Center efforts focused on developing

comprehensive services within a defined area through the efforts of one

facility. The Mental Health Systems Act will assist States in developing

comprehensive mental health services throughout their jurisdictions by

using public and private resources.
PROFESSIONAL PERSONNEL

Primary Care

Pediatricians and family physicians are the primary care health

providers for children. Other members of the health team consist of physicians in other specialties, general nurses, pediatric nurse practition- ers, and physician assistants. The training and roles of these nonphysician professionals and paraprofessionals might include training in mental health but usually does not In England, social workers participated in

general practices on an experimental basis- Initial studies showed that recognition of mental health problems increased and that more treatment for them was provide&

In hospitals, health teams consisting of pediatricians, child psychiatrists, and/or other mental health professionals have been successfuL The roles of primary care physicians are unclear and their training

varies. Health promotion and disease preventkw. must be part of primary

care. Beyond this, several possible roles for primary care physicians are Recognition of a condition, diagnosis, and referral (as in surgical disorders) Recognition of a condition, diagnosis, brief treatment, and referral if the treatment is not successful (as in dermatological disorders) Recognition of a condition, diagnosis, and treatment (as in

general medical disorders) Ideally, one would not sharply define the role of a primary care

physician, but would allow each to choose his own level of activity. The Ong must be related to the anticipated role. If the physician is expected to refer the majority of patients with emotional problems to mental health professionals, training should emphasize recognition of mental disorder and suitable referral, in the same manner as primary care physicians are trained to make surgical referrals. On the other hand, if the physician is expected to treat significant numbers of patients with mental health problems, training should include the proper use of psychotrophic drugs and the various types of psychotherapeutic techniques. Where the physician works with a multidisciplinary physical and mental health team, training in team techniques and group dynamics would be usefuL If the physician is to be the primary educator and counselor of families, he or she should be trained in family systems dynamics and family therapy

techniques. The requirements for family practice are much more specific than those

for pediatrics (23). The special requirements for residency training in

family practice state: The resident should learn how to diagnose and manage most psychosomatic and emotional problems. He should become competent to deal with the common tensions, anxieties, and depressions

that initiate or complicate a substantial proportion of the problems with which the family physician will be faced. The resident should

learn to recognize the neuroses and psychoses and to provide for the

589

5
after-care which many patients require following discharge from a

mental institution.

In the family practice unit, most of the pertinent knowledge and

skill can best be acquired through a program in which psychiatry is

integrated with medicine, pediatrics, and other disciplines. In

addition, experience on a specialized psychiatry service with responsibility for the care of serious illness under supervision may be

desirable. This will enable the resident to recognize major psychoses

and to deal with the psychiatric emergencies which constitute a

major problem for family physicians. Despite these requirements it is probable that some or many programs

provide only limited experience in mental illness.

The special requirements for residency in pediatrics are more ambiguous: Clinical training should be obtained in general medical pediatrics,

nutritional disorders, care of new-born infants, preventive pediatrics, and outpatient clinics in the various departments of medical

pediatrics. Correlative studies are recommended especially in contagious diseases, in clinics for well babies, in the mentally deficient,

and in those with neurological disorders or who present problems in

behavior. (emphasis added) The American AT.:-aderay of Pediatrics' Task Force on Pediatric

Education (8) is addressing this problem. Perhaps a minimum curriculum for primary care physicians covering

the health-mental health areas should cover the following areas:

Knowledge of biopsychosocial growth and development abnormal variations of normal

pathologic Ability to perform biopsychosocial interviews

be able to collect data

understand the significance of the data

integrate data

establish and formulate a treatment plan Ability of psychopathology of children and adolescents

with children

with adolescents

with parents with families

Knowledge of psychopathology of children and adolescents

Knowledge of psychopharmacology Knowledge of and ability to use community resources and

agencies Ability to consult mental health professionals Ability to recognize stress or psychopathology in parents

recognition of effect on children and selective forms of

psychotherapy

awareness of treatment approaches

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Basic ability to counsel and perform selective forms of psychotherapy (not to include psychoanalytically oriented, uncovering

therapy) Ability to perform counseling

education

behavioral managment supportive services child rearing counseling Elective option to.learn specific brief therapies Knowledge of indications for specific therapy modalities Abffity to refer for therapy Knowledge of special areas of biopsychosocial concern and ability

to intervene

eating, sleeping. motility problems aggressive behavior death and dying within families

- dying child or adolescent family mourning process chronic illness

reaction to illness, surgical procedures, hospitals developmental disabilities

the high-risk infant (coping, psychosocia' I stress, long-term

followup) separation, divorce, custody, remarriage, alternative families academic difficulties

sex education

psycZiophysiologic diseases and conversion reactions Ability to function as a school consultant Knowledge-of developmental disabilities and chronic diseases Awareness of the physician as a person

awareness of self and effect on patient, family, practice

awareness of effect of career on family

awareness of roles and responsibilities in community

awareness of interpersonal aspects of working with colleagues, partners, office staff

Mental Health Professionals

The four primary mental health disciplines are psychiatry (including

child psychiatry), psychology, social work, and psychiatric nursing. Case work, welfare work, and special education are some related professions.

Number of Professionals

Psychiaby

The current number of psychiatrists is estimated to be 28,000. This

figure is about 10,000 fewer than current projected needs. Child psychia' -

56 591
trists are currently estimated to be 3,000, far too few to even meet minimal

needs. A major decrease has occurred in the number of medical graduates

who are entering psychiatry as well as in the number of foreign medical

graduates training in this country. The potential shortage of psychiatrists

and child psychiatrists is a major concern.

Psychology

In 1979 the American Psychological Association estimated that 27,500

doctorate level psychologists were in the health service field. Between

5,000 and 6,000 of them are engaged in providing services for children_

Approximately 22,000 counseling psychologists have master's and doctorate degrees; the percent who are trained to work with children is unclear.

Social Work

The profession of social work does not distinguish subspecialties.

Therefore, it is not only difficult to obtain an accurate estimate of all

psychiatric social workers, but it is also difficult to obtain an estimate of

those trained to work with children-Approximately 20,000 social workers

with master's degrees work in psychiatric-mental health facilities. The

numbers working in health or welfare settings are not available.

Psychiatric Nursing

Exis' king data often define a psychiatric nurse as any nurse working in a

mental health facility. These nurses might have a 2- or 3-year training diploma, and either a bachelor's or a master's degree in psychiatric

(mental health) nursing. The National Institute of Mental Health defines a

psychiatric nurse as one who has a master's or a higher degree. It is

estimated that between 5,000 and 7,000 psychiatric nurses have master's

degrees. The percent of these nurses who work with children is unknown.

Today a shortage of child psychiatrists and other child mental health

professionals, a geographic raaldistribution of these professionals, an

increased awareness of and need for child mental health services, and a

primary health care system that is not yet able to provide the needed

health-mental health care of children exist.

Training

General Psychiatry and Child Psychiatry

Completion of medical education is required. Training in general

psychiatry requires a 4-year residency period. During this time a minimum

of 6 months must be spent working with children- Training must be

completed in general psychiatry before 2 years of training in child

psychiatry begins. (A combined program of 3 years in general psychiatry

and 2 years in child psychiatry is acceptable.)

592 5 i7
PsychoMK/

A doctorate in clinical or counseling psychology takes an average of 4-5 yea= of graduate trainn g. This training includes i a l-year clinical internship. The percent of training spent on research, evaluation, psychological testing. and clinical experiences varies with each program_ The clinical intern can train in clinical child psychology.

Social Work

A 2-year master's program is required. During this time each student has one or two field placements. Emphasis is placed on continuing one's

training. during the first few years of postgraduate employment, and

supervision is frequently offered_ Training and early employment can be

completed with no, little, or extensive experience working with children.

Psychiatric Nursing

A 2-year master's program is required. Some psychiatric nurses have a doctorate degree. The amount of clinical training with children will vary with the program.

Shared and Unique Skills

Each mental health professional shares knowledge in normal psychoso- cial development and general psychopathology. Whether the professional is skilled in all aspects of diagnosis and individual psychotherapy, group

therapy, behavioral therapy, or family therapy depends on his or her

training and expm-iences. General psychiatrists, because of their medical training, are considered

skilled in the diagnostic process, especially when organic, neurologic, and psychosocial factors are involved. Child psychiatrists, like pediatricians, are skilled in diagnosis in the preadult. Like physicians, psychiatrists can write prescriptions, admit patients to hospitals, and manage hospital units. Psychologists are the only mental health professionals trained to

perform psychodiagnostic testing. They are often better trained in normal development than other mental health professionals and are also trained

in research and evaluation. Clinical child psychologists perform therapy with children, adolescents, and their families with a range of technical capabilities. Social workers have a greater knowledge of community systems and

agencies and the ability to mobilize such services. Some social workers have had special training in child, adolescent, and family therapy. . Psychiatric nurses are familiar with general medical care and in the use and dispensing of medication. They often work as teachers and supervi- sors, usually in general or psychiatric hospital settings. Some psychiatric nurses have had special training in child, adolescent, and family therapy.

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593
The most cost- and clinically effective system of care not only utilizes

the various shared levels of knowledge and skills of the health and mental

health professionals, but also maximizes their unique abilities.

One useful distinction is between the health and the mental health team

models. The health team has a physician in charge. Other health

professionals and paraprofessionals nay work with the team, but the

physician has primary responsibility and authority. The mental health

team functions differently. The leadership of the team might depend on

the function of the team. A child psychiatrist might lead an inpatient

treatment or diagnostic team; a psychologist might lead an outpatient

treatment team; or a social worker might lead a community-based

treatment center. Within the team all disciplines have shared, unique roles.

Depending on the activity, a team member might be supervised by the

leader or might function independently. Who can do what, where, and

with or without supervision will vary from facility to facility.

ISSUES, OPTIONS, AND RECOMMENDATIONS

FOR HEALTHMENTAL HEALTH CARE

Issue: Physical and Mental Health Service

Delivery Model

The current national goal is to make primary care central to the delivery

of physical and mental health services. In this model, the child psychiatrist

and other child - trained mental health professionals provide consultation

and liaison services to the primary care physician and provide specific

tertiary level care. For this model to be successful the roles and

responsibilities for each professional must be clarified and training and

continuing education must include the necessary knowledge, skills, and

attitudes. A cost-efficient, clinically competent system must guarantee the

most efficient use of all mental health professionals as well as assurance

that quality of care will not be compromised because of cost.

Ideally, each profession should shift from a professional discipline

orientation to a patient-need orientation.. Among the various competent

professionals and the various potential settings for mental health services,

the deciding factors for selection of the most suitable persons and places

should be their cost- and clinical-effectiveness. What interventions are

best at what level of health delivery system, and who can provide them?

What knowledge and skills are needed at each level? Who has these

abilities? Such questions could lead to a clarification of professional

training needs as well as to the determination of numbers and distribution

needs.

Such a rethinking of roles and identity is not easy. Reasons can be

found why each profession and specialty evolved as it did. As each

profession struggles to reexplore roles and identity, economic as well as

status issues interfere with objectivity. The best interest of children and

youth should come first; but difficulties arise in being so altruistic. This

594
struggle exists between family medicine and pediatrics. It also exists within the four mental health disciplines. Which profession can do what? Where? Who can establish a diagnosis? Who can admit to a hospital? Who can peform what treatment? Who needs to be supervised? By whom? Answers to some of these questions (who can prescribe drugs or admit to a hospital?) are dictated by law. Some of these current issues are based on

tradition.

Option 1

One approach toward addressing the issues of roles and functions of health and mental health service professionals is to look at levels of emotional stress or psychopathology and to define which professionals could treat children at each leveL This approach would suggest the

following model: Level I: Children with difficulties arising from faulty experiences

such as emotional deprivation or family dysfunction Level 2: Children with surface conflicts between themselves and

parents, siblings, the school environment, and the neigh- borhood

Level 3: Children with conflicts that have become inner conflicts

and have resulted in neuroses and character disorders.

Level 4: Children with difficulties arising out of or related to physical disorders (such as metabolic or hormonal disorders and brain dysfunctions) Level 5: Children in need of special facilities (such as the mentally retarded and psychotic) Children at levels 1 or 2 could be treated by most mental health

professionals at the predoctorate level and many primary care physicians. Children at level 2 need to work with master's or doctorate level mental

health professionals skilled in child psychotherapy including child

psychiatrists, many general psychiatrists, and those doctorate level psychologists and other mental health professionals trained in this area. Children at level 4 need to be treated collaboratively by medical and mental health professionals; the type of mental health professional would depend on the additional presence of emotional difficulties as described

for levels 1, 2, or 3. The type of professional needed to treat the child in

level 5 would depend on the presence of difficulties described in the preceding categories.

Option 2

Another approach for determining professional roles and functions is based on the service delivery system as a continuum wherein patients enter the system and penetrate it as deeply as necessary until they obtain

appropriate care.

595
In the health continuum one might conceptualize:

The Family, Solai. Neighborhood

General Health Care. including Prratal avid well Care

Acute Heloath Care

chronic Health Care

Each of these levels might be private or public; each might be

ambulatory or inpatient; each might be a solo practitioner or an organized.

system (e.g, a health MilintestauCe organization). The types of clinical

interventions would vary witheach level of care.

The mental health analogue might be conceptualized as follows:

The Family. School, Neigbothood

c.oinintinity

Mental Health Diagnostic arid

Outpatient Care Partial Hospitalization Inpanent Care

Hospi Residential Chronic

Treatment Care

As with the health Cale continuum, each level might be private or

public, a solo practitioner, or an organiZed group. The types of clinical

interventions would:vary with each level of care.

Ideally a comprehensive pbysical and mental health system would allow

in to move betweett the two systems as follows:

596

1Prenatal Care Well-Chad aro.imp-Connnuaityt

General Health Care Diaeogric and

gvaluataoa

Acute Health Care

Outpatient

Partial Hospi Care

Chronic Health Care

601

inpatient
With such a model several working assumptions exist: (I) The needs at each level for provision of certain services as well as

the necessary access routes and backup support systems could be

clarified..

(2) Staffing roles and functions that maximized the unique and

shared skills of different health and mental health professionals

in a clinically meaningful and cost-effective way could be developed. For example, roles for both health and mental health professionals at each level are found, but the degree of direct versus supervisory-consultative responsibility will vary for each

profession as one moves up or down the system. For each part of the system, different professionals would have shared

or unique skills. For example, if a 15-year-old depressed female was seen

in a medical setting, the ability to differentiate between depression and

hypothyroidism would be shared by the psychiatrist and the primary care physician. If the diagnosis were depression, the development and

administration of therapy would be the responsibility of the psychiatrist If

the same patient were seen in a mental health facility such as a community mental health center, the responsibility for diagnosis might be that of the psychiatrist; however, the ability to develop and administer treatment might be shared either with the psychologist or another mental health

professional. Such an effort to clarify unique and shared skills in different parts of the health delivery system is necessary. Only after this is done, can training, staffing, and distribution needs be fully understood or addressed.

Issue: Professional Personnel Needs

In the United States sufficient health promotion, prevention, and

clinical care programs exist. The problem is in the systems of care and in

the availability of professionals in the health and mental health fields with

the appropriate knowledge, skills, and attitudes. The primary care system has not been as successful in addressing the physical and mental health needs of children as desired. It will not become

successful until roles are clarified and programs are established to train

their residents to attain certain levels of competence. If family physicians are to address the mental health needs of the country, the =tental health

care requirements must be fulfilled. A family practice resident cannot receive minimal training in psychiatry and be qualified to provide primary

care. Adequate training is necessary because almost two-thirds of the

individuals with mental health problems are seen by family physicians. In

addition, pediatric education must also be reconsidered and restructured. Another option is to abandon the concept of primary care and return to

specialty care. In both options efforts must be made to make primary care

successfuL

The mental health field must shift from a guild orientation to one that addresses the needs of the country. The maximal use of shared skills in a

cost-effective way with a carefully planned use of unique skills is

necessary.

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Issue: Economics of Primary Care

Major economic, medical, and psychological advantages are derived

from performing much of the diagnostic and treatment care of children in

an ambulatory setting. Yet, such care is often not fully covered by Federal

or third-party plans and can result in unnecessary hospitalization. In addition, primary care physicians find it difficult to provide mental

health diagnostic, counseling, or treatment services under the current

reimbursable model. For example, if a usual 5- to 7-minute office visit

costs S12-$15, an hour of counseling would cost $1004150. Considering

the average overhead of operating an office, could the primary care physician provide such services for the usual $50460 charged by

psychiatrists? A reimbursable model for primary care physicians who

provide mental health services must be developed. Furthermore, for primary care physicians to be effective in handling

mental health issues, they may need occasional consultation with or

supervision by a mental health professional. Who will pay for this

nonpatient contact time? When one works with mental health problems,

phone consultations, visits to schools, or conferences with agencies often

increase. Who will pay for these collateral activities? If psychiatrists and other mental health professionals are needed to train primary care

physicians in the area of mental health, who will pay for this teaching

time?

Unless these issues are resolved, the primary care physician and mental health professional will not be able to work collaboratively to provide

mental health services.

If psychiatrists and other mental health professionals are needed to

train primary care physicians in mental health, who will pay for this

teaching time' If consultation, liaison, and supervision services are

requested by the primary care physician, who will pay for this nonpatient

contact time?

Unless these issues are resolved, the psychiatrists and other mental

health professionals will not be able to afford to help the primary care

physician handle mental health issues. As with the health professionals, the care provided by mental health

professionals is often based more on what facilities exist or what Federal

or insurance coverage is available than on what is best for the patient. All

would agree that prevention is as important as treating people once they

are Not only does prevention mduce illness and the possibiaiy of death

but it is also cost efficient 1r et, reimbursement plans do not cover prevention. The absence of or limited mental health coverage of most

Federal and third-party carriers must be corrected. The mental health

needs of people are as important as the physical health needs, and

psychiatric problems should not be handled differently than any other

medical problem.

Recommendations

(1) The third-party and Federal reimbursement plans must be modified to encourage the use of ambulatory care whenever

598

`L.
possible. This care is less costly than inpatient care and is less

stressnal for children and families.

(2) The third-party and Federal reimbursement plans for primary

care physicians must be modified to pay not only for the provision of mental health services but also for additional collateral and nonpatient contact time. (3) The third-party and Federal reimbursement plans for psychiatrists, child psychiatrists, and other mental health professionals must be modified to pay for collateral and nonpatient contact time as well as for time spent consulting with other health

professionals who deliver mental health services. (4) A reimbursement system is needed to cover preventive services directed toward specific individuals as well as toward groups. (5) The third-party and Federal reimbursement plans must cover patients with psychiatric alnesses as fully as they cover patients with medical or surgical illnesses.

Issue: Legislation

CNN Hada Assam Ph=

-----In-t967--Congress-attenipted-to-expand-- Medicaid- to do- more than

simply pay for health services by enacting the Early and Periodic Screening, Diagnosis, and Treatment Act (EPSDT). This program

required States to develop programs to periodically screen, diagnose, and

treat children for various disorders. Unfortunately, problems with the program occurred: many children were not eligible for EPSDT or Medicaid; little outreach went to those who were eligible; those that did

get screened were rarely followed up, and, even if they were, the necessary

treatment was not always covered under the State's Medicaid plan. Nationally only one-fourth of eligible children had been screened by the

end of 1977. Because of low reimbursement for services and the amount of

paperwork required, inadequate numbers of providers were willing to

participate. Penalties for States mounting inadequate programs were not

enforced.

The Child Health Assessment Plan (CHAP), anr-ither attempt to expand

the concept of Medicaid, has been introduced each year for the past 3

years. At this time, the bill has passed the House and is in committee in

the Senate. The House bill provides for mental health coveragt; the Senate bill does not. The key to a meaningful CHAP Act is comprehensive coverage for both health and mental health care without discriminating on

the basis of diagnosis. If CHAP is enacted with only physical health

coverage, the ability to meet the physical and mental health needs of lowincome, poor, and underserved populations will be greatly limited.

Recommendations

(1) The Act should include

Ambulatory mental health care in clinics, including community mental health centers. (In most States psychiatric services

604

599
are already covered as "physician services." Such limitation

limits reimbursement for clinics using the other mental health

professionals.) Emergency crisis intervention services at inpatient psychiatric hospitals. (In most States general hospital psychiatric services are already a mandatory service included in overall general hospital services.) A federally defined lower limit on the amount a State can prescribe for payment for mandatory services (e.g., some States limit mental health care to five visits or require prior authorization; neither limitation is true for health care.) (2) The types of services covered under CHAP should be available

for all children and not just for those eligible for Medicaid.

Education for All Handicapped Children Act (PL. 94-142)

A Federal law now provides for services to children, regardless of handicap, and establishes these services as a right guaranteed by law. The emphasis on early diagnosis and intervention is an important tenet of good health and mental health practices. However, despite the intent, many problems have arisen with the implementation of the law at State and local levels which have led to confusion, frustration, and, at times,

hostility among education, health, and mental health professionals. In fact, the lay, requires each State to ensure that handicapped children

receive a free and appropriate education and not through each State's Department of Education. The public school is responsible for implementing all related services listed on an Individualized Educational Prescription (IEP), but does not have to be fiscally responsible for each service. However, other State agencies (health, welfare, corrections, mental health,

mental retardation, and human services) are taking advantage of the

ambiguity in interpreting the law by dropping services they provided by

assuming that the Department of Education will now cover the cost of

such 'services.

Moreover, misinterpretations of the law by educators, special educators, school boards, parents, and other service providers have led to exaggerat- ed expectations. Some school districts have violated the spirit of the law

by purposefully underidentifying or mislabeling children so that they

would not be forced to provide programs. Some school districts have tried

to implement the law fully and have found that such efforts strained

financial and professional staff resources to the limit Other school

districts face the possibility of bankruptcy if they fulfill the understood

intent of the law.

The solution to the current difficulty will be to require that each State

integrate its health, mental health, and education plans to assign

responsibility for a spectrum of services to specific agencies (e.g., psychological therapy, room and board, transportation, administration, recreation, and social systems). Furthermore, problems of handicapped children do not lend themselves

to easy solutions or remedies. Even the simplest handicap can be of

complex etiology, involving biological, social, and psychological interac600 6
tioas that defy easy anemic= and diagnosis and that call for complicated programs of intervention requiring many resources. Focusing exclusively on the basic educational needs and ignoring the complex etiology of

handicapping conditions or family circumstances may be too simplistic or

not relevant. Planning must be for the whole child and include his or here

faimly- P.L. 94-142 should be considered an opportunity to redesign the service

delivery system for children and for the sharing of responsibility,

authority, and funding.

Reconzmendations

(1) The State and local advisory committees should include both

health and mental health professionals. (2) The State plans should include interagency agreements between

the State departments of education and health and mental health

sharing the responsibility for handicapped children, and this

requirement should be conditional to the receipt of Federal

funds. As part of these agreements, the financial responsibility

for. "related services" should be clarified and shared by all

agencies involved. (3)_Professionals in the health and mental health professions must

be trained to work cooperatively with education and special

education professionals. (4) Health and mental health professionals must participate in the

training of school staff who work with handicapped children and

with health and mental health team members.

(5) Health and mental health professionals must work with normal

children and the classroom teachers in helping them understand

and accept the handicapped children now in their midst.

Social Security Act

The number and type of mental health services provided for under the

Social Security Act vary from State to State and are usually either

nonexistent or of limited scope. Under Medicaid, mental health services

may or may not be provided at the State's option. Medicaid emphasizes

inpatient care, physicians' services, and institu.tionaliz"action. It restricts

services for certain age groups and is replete with restrictions on

reimbursement for mental health care. Mental health care also suffers

from State-imposed restrictions on coverage. Comprehensive mental

health systems such as community mental health centers often are not

eligible for reimbursement. Medicaid covers basic or inpatient mental

health care only if the services are providecl through a general hospital.

Psychiatric hospitals, community mental health centers, and free-standing

facilities with inpatient units are not reimbursed. This general hospital

restriction is also true for outpatient services in_most States. Most States

only reimburse for outpatient services provided by physicians. It is unreasonable that mentally ill Medicaid eligibles are to a large extent

denied freedom of choice regarding treatment facilities; it is illogical to

601
fully reimburse for psychiatric treatment in general hospitals at costs 40-60 percent higher than those of many free-standing psychiatric

facilities. Medicaid also restricts payments in most States for psychiatric diagnoses but pays for medical cliagnosei. Although approximately 15

percent of the population needs mental health care, only 4 percent of the Medicaid budget is disbursed for mental health services. The -preceding concerns regarding the Social Security Act related

equally to the Indian Health Services (PL. 83-568), the Community Services Act (Head Start), the Adolescent Health Services (P.L. 95-623), the Child Abuse Prevention and Treatment Act, and the Appalachian Regional Development Act.

Recommendations

(1) Federal regulations should be modified to require mental health

coverage. A comprehensive physical and mental health care

system is needed that does not discriminate by diagnosis. (2) State advocates are needed to ensure that such services are provided and that all State health and mental health programs collaborate in a comprehensive care system.

The Future: National Health Insiiiance

Whatever form National Health Insurance takes, coverage of all health- mental health services is critical to provide comprehensive health care to

children. If coverage for mental health services is limited or omitted, neither the primary care physicians nor the mental health professionals will be able to provide needed services. The PCMH underscored this concern with any future form of National Health Insurance. Among the PCMH recommendations, the following, which specifically related to Medicaid (and Medicare), have clear implications for any National Health Plan:

(1) Amend current legislation to Establish minimum eligibility standards based on income and

assets rather than on categorical requirements so that everyone who satisfied the definition of financial need would be eligible

for assistance

Establish minimum mental health benefits to be included in

every State Medicaid plan Remove provisions that allow for any discrimination in the

allocation of services on the basis of age

(2) Instruct the Secretary of DHHS to ensure that States have effective systems to prevent discrimination on the basis of diagnosis Mental health services are made available within Medicaid

child health programs State Medicaid plans offer a reasonable amount of ambulatory mental health services

State Medicaid reimbursement policies do not limit the

availability of mental health services

60 7
Research

Basic and applied research that focuses on the cost-effective and clinical

competence of health and mental health professionals working in

multitiered systems of care is needed for comprehensive health and mental

health delivery systems. Basic data are also needed on the number of individuals treated and

types of services required in the many health and mental health facilities

existing throughout the country. A national network of epidemiological

and biometric data collection is also needed to analyze the incidence and

prevalence of physical and mental health disorders.

SUMMARY OF SPECIAL HEALTHMENTAL

HEALTH NEEDS OF CHILDREN

(I) Service delivery Prevention: A major focus in clinical practice and in public

education must be health-mental health promotion as well as

all levels of prevention efforts. Clinical care: A comprehensive continuum of health and mental health care delivery is needed. Such a system must be

accessible to all and should encourage health-mental health

linkages whenever possible. Advocacy: Coordinated efforts are needed within and between Federal departments as well as within each State to

ensure the maximal cooperation and utilization of funds,

programs, and services for children. A formal Federal and

State child advocacy system can best address these needs.

(2) Primary care The physical and mental health care of children should be

provided by primary care physicians in collaboration with

other health and mental health professionals. The roles and functions of the primary care physician must be

clarified for each level of care delivery. Training programs for primary care physicians must be

designed to address their defined roles and functions in

meeting the health needs of the country. (3) Economics of health-mental health care Federal and third-party coverage plans and any forms of national health insurance must adequately reimburse primary

care physicians for mental health services as well as for time

needed for training and supervision in performing these

services. Federal and third-party coverage plans and any forms of

national health insurance must adequately reimburse psychiatrists and other mental health professionals for time sp=t

teaching, supervising, or providing liaison services to primary

and general health care physicians. Medicaid and other Federal plans must finance total health

care and not selectively discriminate against mental illness

603
diagnoses, certain inpatient delivery systems, or ambulatory

care. Third-party carriers must cover total health care and not selectively discriminate against mental health diagnoses, certain inpatient delivery systems, or ambulatory care.

(4) Legislation

The Child Health Assessment Plan (CHAP) must be passed with comprehensive health and mental health coverage. Federal regulations for Titles V, XIII, and XIX of the Social Security Act must be modified to set both the lower and upper

limits of State funding of mental health services as well as to

eliminate current discrimination against psychiatric diagnoses, places for inpatient treatment, ages covered, or ambulatory

care.

Through amendments to the Social Security Act or through

new legislation, a Federal, State, and Federal-State system of child advocacy should be established to ensure a comprehen- sive health and mental health care system-

. Under P.L. 94-142, the U.S. Bureau for the Education for the

Handicapped must clarify the roles of health and mental health professionals and assist in clarifying the financial responsibility for "related services." Under P.L. 94-142, the State must include members of both

the health and mental health professionals on the State and

local advisory committees. The State must develop written interagency agreements between the State Departments of Education, Health, and Mental Health regarding the cooperative responsibility for the health and mental health care of children.

(5) Research More basic and applied research is needed in the biopsychoso- cial areas of health promotion, somatic illnesses, and psychiatric illnesses.

Basic and applied research into models of comprehensive health-mental health delivery systems is needed, focusing on

the maximal use of health and mental health professionals needed to provide clinically competent and cost-effective care.

REFERENCES

(I) Shorn M. F. mid F. V. Mannino. "M tai Heade Services fa Children and Youth: 1776-1976."

loaned ofClinical amid firycbabily5: 21-25. Winter 1976-

(2) Alcohol. Drug Abuse. and Mental Heath Administention. Report of the ADAMHA Manpower

itanlysie Task Form. Waebinglon. D.C.,. May 197$.

(3) National Institute d Mental Connemnity Alkestal Health Centers. The Peden, braretment.

Washington. D.C.: U.S Goverment Printing Office. DHEW Publication Number (ADM) 75-677

September 197S.

(4) National Instinne of Mental Health. A Study of Deficiencies and Differentials in the Distcbatioo

of Mesita Hada Resounaur in Pedals,. Washington. MC: U.S. Govsennsent Printing Office.

Smits B. No- 15- DHEWIPabbestion Nuesber (ADM) 79. 517,19791x.
(5) in Commiion or Memel Health dainties. Geisha in Chid Mental Health: Challenge Rs the

amennies. New York: Helper and Row. 1969. (6) Joist Commission ore Waal Ohms amid Heel& Action SW Mental Health. New York: Basic

Mocks. 1961.

(7) Haggerty, R. 1.. K. H. Roghermek, and L B. Plan. Child Health and the Continually. pp. 94-95.

New York: Jolla Wiley and Soma 1973.

(8) Asswiesa Medway otPedianies. The Aware ofPwliatric Edeassion. A Report by the Usk Perm

OR Palish* Baseatlen. Evanson. M.. American Academy &Pediatrics. 1977.

(.9) Begley D. A. and L Ek Goldberg. 'The DeFacsor U.S. Mental Health Services System. A Public

frith Peopective." Archives otosneed ProchistrA 35: 6115-693. Jim n 19711.

(10) Slimpind. h4.. S. Cooper. A. C. Brava. sad G. W. Kahan. Psychiatric Misesses in General Plat:tie&

Loads= Oinked Usk. Press. 1966.

(11) Snead& B. E. Grow M. Wood. R. Pinsk C. Alm I. B. Cicadae. P. Median. R. Dradiman. and

H. Kan. Taydnosociel and Psychosomatic Disposes is Primary Care afChildrea." Pediatrics. in

pram

(12) Rana. D. 3.. C. L. Ono. and A. M. Jacobson. a al. Bunker Hill Health Crater of dos Menachumats

General Hospital. BOINNI, Milnaldiannt16 In Utilisation el' ?kakis and Anatol Health Outpatient

Semi= in Pow Oqpited lfemilri Cow Settiags. I. D. Goldberg. D. A. Regis,. eds. National

Instiness of Mined Health. Series B. No. 17. DREW Publication Number (ADM) 79-1139, in pees.

(13) Simko. SL 3. It Harkin. and IX U. Sainnedia Columbia Mefical Plan. Columbia. Maryland. In Lleiliestion of Health and kleatal Health Outpacing Services in Pow Otgasined Health Cars

Settings L Q Goldberg. D. A. Magian eds. National Institut. of Mesita Health. Series IL. No. 17.

DREW Publication Number (ADM) 79459, in pram

(14) Hooper. E. W. and G. R. Nycs. Greater hharsididd Consonanty Health Plan and Marshfield Clinic

Fee-Sor-Servios population. Marshfield. Wilco in. Is Unrolled= or Health and Mental Health

Oespatisat Services isa Pow Orphaned Health Oar. Sonny. L Goldberg. D. A. Region eds.

Nationsibetinsesothheinfidealth.-Serier B. No. 17. DREW. Publication Number(ADM) 79-039,

in prem. (13) Panes. D. G.. E. M. Staub. H. D. Sands. R. M. Kirschbaum and E. A. Lemaltso. s'A. Study of the

Emotional Resmions of Cadres to Hospitalisation and Mars." Americus .1:Parma of Orthepsychiefly. 23: 70-106. 053.

(10 Pry*. D. 0- and L. D. Eckhardt. "Children's Rsectioes to MINIM HOSpliadiaatiOn. and Surgery."

In The Cismprehessive Textbook orPsydasery. pp. 2100-2107. Secoad Edition. A. M. Freedman.

H. L Kaplan. and B. J. Sadodc. eds. Bedtinorim Wnliaass and Wilkins, 1975.

(.17) Samar. L. and S. Kaplan, 'Cheer redoes on the Einotionid Resatione of Children to Tonsillectomy

and Adenaidertaway.' In Problems etlalhary and Chadhood. M. J. E. Sean, ed. New York: Macy

Foundation. 19411.

(IS) Yam" D. T. A., J. L. Scholium and J. M. Foley. siChsnps in Children's Behavior After

likispitalization.** American learned ofDisestess afCbildrsa. 5111-593. June 1966.

(19) Shwa M. F., ed. Red is the Color ofilertiniF Planning for Children in the Hospiad. Washings:an.

D.C.: U.S. Govemseem Feinting OM*. 1966.

(20) or M. F. and S. E. Goldman. "Mental Health Aspects of Pediatric Care Historical Review and

Current States." In Psychologia" Mastagentew el Pediatric Problems,. P. Magrab. ed. Baltimore:

University Park Press. 19711. (21) National Institute or Mental Health. Mental Disorders and hiss' ary Medical Care: An Analytic

Review of the Litenuture. Washington, D.C.: U.S. Government Priming Office. Swiss D.. No. 5.

DHEW Publication Number (ADM) 79- 661.1979b. (22) Presidents Commiesion on ?dental Health. Report to the President Beam the President's

Commission oa Mews! Health. Yohmie I. Washington. D.C.: US. Government Printing Moe.

1975.

(23) American Medical Association. Directory of Accredited Residencies 1979-812. Chicigo: American

Medical Association. 1979
SECTION V

PLANNING AND

ADMINISTRATION
TITLE V

THE MATERNAL AND

HEALTH AND CRIIIPLED

CHILDREN'S SERVICES SECTION

OF THE SOCIAL SECURITY. ACT:

PROBLEMS AND OPPORTUNITIES

bY

LORRAINE V. KLERMAN. D.P.H.

INTRODUCTION

Since the turn of the century this Nation has assumed a special

i.esponsibrity for the health and welfare of its children. Theodore RoosevelCs convening of the first White House Conference on Children in

1909; the establishment of the Children's Bureau in 1912; and the passage

in 1921 of the Sheppard-Towner Act, which initiated a Federal-State

maternal and child health ". were an steps toward the enactment in

1935 of the =liar piece that is the focus of this paper: Title V

of the Social Security Act.

In the 45 years that have elapsed since 1935, this country's system for

the delivery of health services has undergone major modifications. The

role of the Federal Government in either directly providing or funding

services has grown enormously. More than 600 federally supported

community health centers and other priniary care facilities' serve millions

of disadvantaged individuals, a large percentage of whom are children or

women with fertiliv-related needs. Medicaid and Medicare finance the

services of physicians, hospitals, and other providers. Both directly and

through its Early and Periodic Screenin' g, Diagnosis, and Treatment (EPSM) program, Medicaid probably affects more children than any

other public medical program. Federally supported train' ing programs have produced new categories of

personnel to serve women and children: pediatric nurse practitioners,

IA. or Jewry 1910-135 Onntisamity Hada C. r+. 397 Rand Heal d% Initiatkra and 77 Urban

Hada Initiative projects. sad 39 Migrant Heads Cessna.

612 609
child health associates, and physician's assistants, to name a few. The National Health Service Corps has placed a variety of health practitioners

in medically underserviced areas. An expanded Federal research budget has made possible scientific advancessuch as new immunization materials, innovative forms of corrective surgery, and life-saving proce- dures for immature and defective infantswhich have changed the

delivery of services. Innovations have not been limited to the agencies that traditionally

have assumed responsibilty for health care. The educational establish- ment, for example, has undertaken a major role in ensuring the delivery of appropriate care through the enactment of Public Law 94-142, the Education for All Handicapped Children Act. Similarly, nutritional programs such as the Special Supplemental Food Program for Women, Infants, and Children (WIC), and the School Breakfast and Lunch

programs have brought the Department of Agriculture into the health

field.

Despite this increased Federal participation in health care, the structure of Title V has remained basically unchanged. Its charge today is quite

similar to that of 1935.2 The current law authorizes appropriations: For the purpose of enabling each State to extend and improve

(especially in rural areas and in areas suffering from severe economic distress), as far as practicable under the conditions in such State, (1) services for reducing infant mortality and otherwise promoting the health of mothers and children, and (2) services f,r locating, and for medical, surgical, corrective, and other services and care for and

facilities for diagnosis, hospitalization, and aftercare, for children who are crippled or who are suffering from conditions leading to

crippling. Although the Federal Government increasingly has targeted its medical care dollars at specific populations and geographical areas, Title V's

formula grant mechanism has allowed the States to make most decisions about the services to be provided and the populations to be served with minimum Federal direction. Such a policy may encourage innovative

leadership within States, but it also can result in nonresponsiveness and

stagnation.

CURRENT OPERATION OF TITLE V

Title V functions under an ongoing authorization, but every year Congress must appropriate funds specifically for its programs. (Since 1976

the amount has been over $300 million; the President's fiscal 1981 budget requested $394 million.) Most of these funds, over 85 percent, are distributed directly to the States3 through a series of formulas written into

the statute, hence the term "formula grant." Some funds, however, are

2For comparison. see Appendix A.

3Tide V hands also go to the District of Columbia. American Samoa. Guam. the Northern Marianas,

Puerto Rico. the trust territories. and the Virgin bland,. In this report. the words "States.* and -State Title

V agencies" wi1I be used to include these jurisdictions and the Tide V agencies serving them.

610 GI 3
retained at the Federal level for discretionary use by the agency that administers Title V hinds.

The Title V pro originally was administered by the Children's Bureau. This the program to child welfare services and provided

access to decisionmalcers in Congress and the Administration. Currently Tale V is administered by the Office for Maternal and Child Health

(014CH), one of several program offices within the Bureau of Community Health Services-4 This administrative structure was designed to encourage better integration of Government-funded health service delivery systems such as community health centers, family planning, the National Health Service Corps, and maternal and child health programs. Unfortunately, this integration has been achieved at the cost of diminished visibility of Title V.

Distribution of Appropriation

An awareness of the method by whs., it Title V funds are distributed is essential to an understanding of the problems and potentials of the program. The legislation allows 10 percent of the total ziadon to be

used for training and research projects, but the may transfer up

to 5 percent for other purposes. (In 1980, 8.4 percent of Title V funds were

allocated to research and train` ing through Sections 511 and 512.) Training

and research funds are distributed directly to public or nonprofit private

institutions of higher learning by OMCH. Research funds may also go to

public or nonprofit private agencies and organizations. The remaining funds, usually slightly in excess of 90 percent of the total appropriation, are divided by Congress into a portion for Maternal and Child Health Services (MCH) and a portion for Crippled Children's Services (CCS). The maternal and child health allotment is divided equally

into Fund A and Fund B. Fund A is entirely distributed to States. Each State receives an allotment of $70,000 plus that portion of the remaining

amount that equals the proportion of the number of live births in the State

relative to the total number of live births in the country. Federal money

received through Fund A must be matched dollar-for-dollar by the States. Five million dollars of MCH Fund B are used for special projects for mentally retarded children. Up to 25 percent of the remainder of Fund B

can be retained at the Federal level by OMCH for grants to State agencies and to public or other nonprofit institutions of higher learning for special projects of regional or national significance that may contribute to the advancement of maternal and child health. This is called the MCH

Reserve B Fund. The remaining portion of Fund B is apportioned among

the States according to each State's need for financial assistance in

carrying out its State plan, and considering the number of live births and per capita income in each State.. The apportionments vary directly with

4The leasett d Community Health Services is in the Health Services AthnUairtraticm. which is a

coreponeme of the Public Health Service within the Department of Health and Human Services.

5Throughout this it the Secretary' refers to the Secretary of the former Department of Health,

Education, and Welfare or the current Department of Health and Human Services.

611
the number of live births in the State. rural births are given twice the

weight of urban births; and inversely with State per capita income. Fund

B does not have to be matched by the States.

The same basic method is used to distribute crippled children's funds.

but instead of the number of live births, the number of children under 21

years of age is used. (The law says the Secretary should take into

consideration the number of crippled children in need of services in each

State, but the regulations say that because adequate statistics on the

number of crippt-d children are not available, the number of children will

be used as an index.) Some States also receive a supplemental allotment

under the provisions of Section 516 of Title V (see below). In 1980, States

received over $300 million from Maternal and Child Health and Crippled

Children's Service formula grants and 516 funds:

Allotment Millions of Dollars

MCH formula 195.2

CCS formula 86.1

516 ftinds 18.8

Total 300.1

In addition to the formula grants and 516 funds. OMCH distributed

almost $80 million to State agencies and to public or other nonprofit

institutions, agencies, and organizations from Reserve B, research, and

training funds:

Type of Fund Millions of Dollars

Training 26.5

Reserve B-MCH 24.4

Reserve B-CCS 11.0

Mental retardation -MCH 5.0

Mental retardation-CCS 5.0

Research 5.3

Total 77.2

Maternal and Child Health: Funds and Services

MCH funds are used both for a variety of conventional activities with

origins in the earliest days of the program and for special projects

developed in the 1960's.

Conventional Activities

Until the mid-1960's most MCH funds were used by States directly and

through allocations to local health departments and other agencies for a

wide variety of activities, but primarily with a preventive rather than a

curative emphasis. Included in these activities were prenatal clinics,

maternity-nursing services, well-child conferences, immunization pro612 61 5
grams, school health programs, and various screening programs. The care of the ill child generally was considered to be the responsibility of the private sector, although some departments operated pediatric clinics. Most services were provided by salaried staff or consultants employed by public agencies, but some States paid private practitioners and inpatient costs. Services generally were provided almost exclusively to low-income

families.

Because of the absence of uniformity among the States, one could not refer to a maternal and child health program. There were as many maternal and child health programs as there were States. This situation

existed because neither Title V nor its associated regulations specified that certain maternal and child health services were to be provided. Each State was required to have a State plan and the receipt of Federal Title V funds was contingent on the approval of such a plan by the Secretary or his designate. But each State determined the format of its plan and the

content of its maternal and child health program, with consultation from

regional office staff. The required elements of the plan were largely

administrative in nature.

Project Greets

A new era in maternal and child health services began in 1963 when Title V was amended to enable the Federal Government to make project grants to State and local health agencies and other public or nonprofit organizations. Although project grants already were being made on a

small scale through Reserve B Funds, the impetus for an enlarged project grant authority came primarily from the report of the President's Panel on Mental Retardation. The report suggested that adequate prenatal care was one of the few measures available to reduce the incidence of mental

retardation and other handicapping conditions. Because the existing State maternal and child health programs did not appear to provide adequate prenatal services, the Congress added Section 508, "Special Project Grants

for Maternity and Infant Care" to Title V. Although States had to consent if funds were given to other agencies, most Maternity and Infant Care

(MIC) projects were awarded to local health departments serving areas of special need, usually those with high rates of infant mortality. MIC

projects were developed in many urban centers including New York, Chicago, Denver, and Los Angeles. This method of allocating funds, with

little State participation, seemed very promising in terms of making

certain that those in need received services despite low income, the

absence of private physicians, or the reluctance of State health depart- ments to initiate or expand treatment programs. The project model was used again in 1965 when Section 509, "Special Project Grants for the Health of School and Preschool Children," was added to Title V, and medical schools and teaching hospitals were made eligible for grants. The MIC projects were to provide care both for prospective mothers and infants during their first year and for family planning services. The Children and Youth (C&Y) projects were to

promote the health of children of school or preschool age, particularly in

G 613
areas with concentrations of low-income families!' Later, special project

grants were instituted in the area of children's dental health (Section 510).

In 1967, Congress decided to "fold into" the State formula grants, the

funds that were being allocated for the special projects. Originally this was

to take place in 1973, but the date was extended to 1975. Congress also

decided that State should have these special projects. Thus, as of July 1, 1974. for the first time specific maternal and child health programs were required of all States. Each was to have a "Program of Projects" in

all of the following areas: maternity and infant care, intensive infant care, family planning,7 health of children and youths, and dental health of children. Many States already had federally funded projects in one or more of these areas, but almost all had to develop some new program to meet the Program of Projects requirement. Most States did not develop a

statewide Program of Projects in each area; a single project in each of the areas was interpreted as meeting the requirements Thus, although the Program of Projects increased the maternal and child health services available in each State, the distribution of such services was uneven. The geographic area or areas in which the project or projects were located

(usually the areas of greatest need in the State) received augmented

services, but other areas did not benefit. The Program of Projects in most States was a series of demonstration projects rather than statewide

improvements in services, although the latter probably was the congressional intent.

In order to continue to assist the projects previously supported by

project grants and to make it possible for States without such projects to

develop them, the Congress added to the MCH formula funds not only all

the funds previously distributed by project grants ($111.3 million in 1974),

but supplemental funds as well. The MCH formula grant funds jumped

from $50.6 million in 1974 to $163.9 in 1975 plus $25 million in

supplemental funds (see below).9 These supplemental funds were needed because the Title V formula itself had not been changed and its rural emphasis would have sent a large proportion of the enlarged formula

funds to rural States, many of which had not received project grants. If no modification had been made, many of the urban States that had received project grants would have received less in 1975 through the formula

grantsdespite the increased total appropriationthan they had received

by the formula grant plus the project grants in the previous year. To avoid

this, the supplemental allotment section (516) was added to Title V. This

'Although the Office of Economic -Opportunity wax not established until 1964. concern about the

problems of poverty and their relation to health were receiving increased interest in the early 1960's. This

concern, and the perceived need for local community w:tion. probably contributed to the development of

the MIC and OiltY project mechanism.

7The current law states that not less than 6 percent of the Tide V appropriation shall be available for

family planning services.

For a critique of State planning in this area. see: Government Accounting Office: How States Plan For

and Use Federal Funds to Provide Health Services. December 9. 1975 (MMD-75-85).

9Although the total amount available for programs increased by only S27 million. the amount available

directly to State health departments through the formula rose sharply. AU MCH formula and Section 516

funds go to State health departments; only a fraction of the project grants had gone to State health

departments.

614

6 1 6-41

-41-
section provided that no State should receive less through the MCH and

CCS formula grants than it had received from these two grants plus the

project grant in 1968. Section 516 provided the State with the differt71Ce

between these two amounts. This arrangement has created problems for

the so-called "516 States" because they cannot receive an increase in

combined maternal and child health, crippled children's services, and

supplemental funds until Congress appropriates sufficient funds so that,

through the formula alone, they will be receiving more than they did in

1968 through formula plus project grants. Thus in 516 States, any increase

in CCS funds means a decrease in MCH funds. As of 1980 there were nine

516 States.rn Estimates indicate that Title V funds will have to be more

than doubled before the last 516 jurisdiction, the District of Columbia, no

longer will need the supplemental allotment.

1974 1975

MCH Formula 50.6 million

Project Grants 111.3 million

Total $161.9 million

MCH Formula 163.9 million

Section 516 25.0 million

Total 5188.9 million

The project grants and their successor, the Program of Projects, were

significant for many reasons. First, they struck a blow at the traditional

separation between prevention and treatment. Maternity and Infant Care,

Children and Youth projects, Dental Health, and Infant Intensive Care

projects were not just to prevent sickness or to detect conditions, they

were to treat them. Maternal and child health services were no longer

largely preventive in nature. The Program of Projects brought maternal

and child health into the medical care field.

Second, attempts were made to evaluate many of the projects,

particularly MIC, C&Y, and Infant Intensive Care. The evaluations

indicated that these projects generally were successful: infant mortality

declined, children's conditions were found and corrected, and low-birthweight infants survived. Although it could not be proven definitely that

these projects led to the improvementsareas without the projects also

showed gains, and other factors such as improved economic conditions

and the availability of family planning and Medicaid services also played

a rolemost experts felt they contributed significantly. Questions began

to be raised about the effectiveness of more traditional maternal and child

Itc.:-.2.th services.

Third, the Program of Projects signaled a marked change in Title V. For

the first time specific programs were required_ Although still retaining a

great deal of freedom in developing their programs, the States were

required to have at least one each of five types of programs as a condition

of receiving formula funds.

Use of Funds

In fall 1978, the General Accounting Office (GAO) distributed to all

States a questionnaire on maternal and child health programs. Forty-nine

MColorado, the District of Colturtoia. Hawaii. Illinois. Maryland, Massachusetts. Nebraska. New York.

and the Virgin Islands.

615
States and the District of Columbia responded; Illinois did not. According

to the GAO calculations, in fiscal year 1978 the States and the District of Columbia budgeted $200.4 million in Federal Title V MCH formula and Section 516 funds: $108.1 million for the Program of Projects and $92.3 million for other activities. (Approximately $10.2 million of fisca1 year 1978 maternal and child health funds are not accounted for in the GAO

study. Much of this probably is due to Illinois' failure to report. The study did not request information on crippled children's service programs.) The C&Y and MIC projects were the most expensive items within the Program

of Projects.

Children and Youth

Maternity and Infant Care Family Planning

Intensive Infant Care

Children's Dental Health

$48,019,736

42,444,561

7,146,834

7,121,552

3,351,315

The next largest State agency expenditure of Title V formula funds was "Funds for local health departments for delivering such services as prenatal care, family planning, infant care, and health education." The

total funding allocations, as reported to GAO, were as follows:

Program of Projects Funds for Local Health

Departments Funds for Private Contractors

or State Employees

to Deliver Services General Administration of

MCH Program

In-Hospital Care of Mothers or Newborns

Provision of Training Research

Other Special Programs Total

$108,083,998

31,700,989

22,869,604

20,759,320

2,925,241

1,149,821

69,320

12,793,705

200,351,998

This analaysis was performed by the GAO for a special study of pregnancy outcome (1). No ongoing system collects information on the

use of maternal and child health funds using the categories discussed

above.

Reserve B Projects

Congressional termination of specific project grant authority eliminated one mechanism by which OMCH could directly influence maternal and

child health services in the States. The large increase in the total Title V

appropriation caused by the "folding in" of the project grants, however, also resulted in a significant increase in the MCH Reserve B funds (from

$5.5 million in 1974 to $24.4 million in 1980) and a corresponding

616 63 9
broadening in the ability of OMCH to use the increase to influence service delivery. The most expensive and extensive of the new Reserve B fund

endeavors are the improved Pregnancy Outcome (IPO) and Improved Child Health (ICH) programs_ These have a significantly different focus

than the MIC and C&Y projects. First, these Reserve B projects are not specified in the law. Second, instead of emphasizing the direct provision of services, the IPO and ICH stress the need to plan and coordinate existing

services in their respective areas, to educate staff, to develop systems, and only if necessary, to provide services. Third, the IPO and ICH are given

exclusively to States, along with technical assistance, to strengthen their capacity to ensure that necessary services are provided. Other MCH

Reserve B projects include support of adolescent programs, specialized

clinics, and maternal and child health training in schools of public health.

Numbers Served

No data system routinely collects information on the numbers of women and children served by State Title V agencies using Title V maternal and child health funds. Such a system would be difficult to

develop because of the following: (1) The variety of ways State Title V funds are usedto provide

services directly, to support local health departments that provide services, to pay for services provided privately, and

others

(2) The separate funding mechanisms formula grants, project grants from Reserve B funds, training grants with a service

component, and others

(3) The multiple funding sources for some programsFederal Title V funds, matching State funds, Medicaid, and others Three systems provide some information about the number of people

served and/or the number of services received in the Stay's: (1) the Maternal and Child Health Services (MCHS) Statistical Series, (2) the National Public Health Program Reporting System (NPHPRS), and (3)

the Bureau of Community Health Services Common_ Reporting Require- ments (BCRR). None of these three sources distinguishes among services provided using Title V formula funds exclusively; services provided using Title V formula funds in combination with other Federal, State, and local

funds; or services provided using State and local funds only.

MCHS Statistical Series

The MCHS Statistical Series was a program of the Federal Title V

agency. The data collection system was begun early in the history of Title V, and reports entitled the Maternal and Child Health Services of Stare and Local Health Departments were issued yearly from 1964 to 1973, when they were eliminated by the FAST Commission in an attempt by the Nixon administration to reduce the burden on State governments. Some

6 21 617
States," however, have continued to complete and submit the forms, and

examples of data for fiscal year 1976 show the following results (2):

Maternity Services Population Served

Medical clinical

Nursing

Inpatient care Family planning

Services to Children

Well-child conferences

Nursing

hepatic' nt care Premature infants

Other children

General pediatric clinic Dental treatment

School Health

Physician examination Visual screening Audiometer screening Dental

413,423

563,586

21,993

1,176,698

Population Served

1,887,925

2,848,612

7,346

28,763

450,437

1,007,257

Population Served

1,501,187

8,358,455

6,030,.562

1,777,722

The usefulness of these figures is questionable because several States did not report and definitions of service populations vary among the States. In

some categories it is uncertain whether patients in the Program of Projects

are included. As previously noted, these figures include maternal and

child health services supported not only by Title V funds, but by Federal funds other than Title V and by local funds. (Because some of the State and local funds must be made available in order to match the money in Fund A, the services are indirectly attributable to Title V.)

National Public Health Program Reporting System

The National Public Health Program Reporting System (NPHPRS) was

initiated in 1970 by the Association of State and Territorial Health Officials under a contract from the Public Health Service_ Its reports focus

on the services, expenditures, and programs of State health agencies_ The

Maternal and Child Health Program Analysis includes family planning,

WIC, and EPSDT, as well as general maternal and child health services. The data, therefore, cannot be considered as providing information on

services offered exclusively through Title V funding. For fiscal year 1978. NPHPRS reported that almost 16 million

individuals received maternal and child health services from State health

agencies (3). These services included both those performed directly by the

State health agency and those carried out by local health departments

"'Seven States did not report at all. but estimates of their service populations are included in the

published report. In other States, reports do not include those served in certain cities, counties, or

limpet' al:.

618 6 21
with the fiscal support and guidance of the State agency. Funding for

these services came from multiple Federal sources as well as State, local, and other funds. Persons served through MIC, C&Y, and other projects in

the Program of Projects should have been included in these figures, but

the NPHPRS staff is uncertain as to whether this pros lure was followed

in all States.

Type of Service Provided Thousands of Persons

Total 15,869

Health screening 12,042

Immunization 919

Dental services 972

Family planning 2,712

Maternity services 495

Genetic counseiin' g 16

WIC nutrition services 1,863

Mental health 1I

Mental retardation 24

Alcohol abuse 1

Drug abuse 1

Clinic, Outpatient, and Other Ambulatory

Services Thousands of Persons

Infant and child health 1,788

Crippled children Tuberculosis

Venereal disease 3

Chronic disease 7

General ambulatory care 82

Other 204

Home health cart 2

Renal dialysis 9

Inpatient care 50

NOTES:

Figures for individual types of service for each program category add to more than total, since total represents estimated unduplicated count for each program.

less than 500.

In 1977 the NPHPRS, in collaboration with the Bureau of Community Health Services, developed a Maternal and Child Supplement. States were

requested to provide information about the following: (1) The number of users and encounters for selected maternity and

child health services

(2) The number of users of early identification and followup services

for preschool-age children and school-age children

(3) The immunization status (by type of immunization) of children who turned 2- and 5-years-old during the reporting period and who received any child health services

(4) Admission and discharge data on infants served by Intensive

Infant Care projects

619
The second report based on the Supplement covers fiscal year 1978 (4).

It includes "services described and documented in the State Plan for

Maternal and Child Health required by Title V, Section 505 of the Social

Security Act, excluding the program-of-projects except Intensive Infant

Care Projects." The report describes "selected services provided, arranged

for, or purchased by staff of state or local public health agencies,

regardless of whether or not Title V funds were expended for them."

Because one-third or more of the States are still not reporting in many of

the categories, the data are not presented here. The NPHPRS staff

anticipates that in another year or two all or most of the States will

provide the information requested.

Bureau of Community Health Services Common Reporting Requirement

The Bureau of Community Health Services Common Reporting

Requirement system was developed to satisfy Federal needs for management data on the programs of the Bureau of Community Health Services

including the Community Health Centers, Family Planning, Health

Underserved Rural Areas, Migrant Health, the National Health Service

Corps, and Home Health Services. Four projects within Title V's Program

of ProjectsMaternity and Infant Care, Children and Youth, Children's

Dental Health, and Family Planningare also included. (The Intensive

Infant Care projects report through NPHPRS.) BCRR forms provide

information on the number of users and limited data on client characteristics and type of services provided. Data for calendar year 1978 for the two

largest projects, MIC and C&Y, are shown in table 1.

In 1979, BCRR added a report on clinical services in an attempt to

measure primary care effectiveness. Six clinical indicators ofmedical care

quality were selected for reporting: immunization, prenatal care, family

planning counseling for adolescents, Pap smear followup, hypertension

screening, and anemia screening. Most of these indicators are applicable

to children and to women of childbearing age, so the addition of this

component should make BCRR more useful for maternal and child health

purposes.

Other Services

As the GAO accounting makes clear, a large proportion of MCH funds

are not used to provide service directly to women and children, or even to

reimburse providers of such services. None of the reporting systems

adequately reflects the importance of so-called "administrative functions."

These functions include establishment and enforcement of standards,

health promotion activities, consultation with other agencies, development

and implementation of interagency agreements, education of personnel,

and similar activities. In addition, in some States Title V funds are used to

pay for newborn screening; laboratory testing; biologicals for inununization; Rh immunization for women; and collection, analysis, and publication of vital statistics.

620 6 4-) "-) P.M"
TABLE 1. Number ot Users, 197$ Calendar Year, by Typo of Provider, Age, and Sex,

Age and Sex

Mnagao Sty and infant Care Users by Type of Provider

Children and Yount

Projects Users by Type of Provider

Medical Dental

Other

Heeler hiedkzal Dental

Other

Health

Female

Under 1 year 52,478 78 39,696 25.630 1,252 16,148 1-4 years 7.150 410 7,525 62,415 9,880 42,059 5-12 years 3,714 906 2,871 92,964 33.086 65.395 13-17 years 44.735 6,700 41,105 33,058 10,497 20.532 18-20 years 72,147 9,737 61.277 9,195 2,678 5,947 21-34 years 137,447 19,741 107,816 1,197 =0 1,171 35-44 years 12,816 1.026 8,367 255 97 200 45-64 years 1,681 108 701 231 77 129 65 years and

over 201 23 74 151 33 97

Subtotal 330,608 40,027 283,759 200,100 52.913 137.296

Male

Under 1 year 49,699 28 36,165 23,231 314 16.349 1-4 years 6,742 364 5,327 61.977 8,424 43.449 5-12 years 1,191 337 337 68,500 24.473 53,150 13-17 years 531 122 155 28,393 9.705 15,602 18-20 years 175 34 21 4.832 1,925 2.856 21-34 years 379 82 64 367 147 224

35-44 years 115 19 21 97 45 53 45-64 years 187 31 45 103 32 42 65 years and

over 76 9 13 66 11 23

Subtotal 59,217 1,026 42,267 187,576 45,076 131,749

Total 390,894 41,053 325.099 388,751 98,876 270.734

Some of the reported users would appear ineligible for these projects: for LUC, females who are neither under age 1 nor in the childbearing ages (13-44), and males not under 1; and for OM

females and males not under age 21- The reasons for this are unclear_

Crippled Children's Services: Funds and Services

Although the Federal regulations that govern Title V do not provide a

"required content" for Maternal and Child Health Services, they do

specify such for Crippled Children's Services (CCS). Provision must be

made for the following:

(1) Services for the early identification of children in need of health

care and services

(2) Diagnosis and evaluation of the condition of such children

(3) Treatment services including at least appropriate services by

physicians, appliances, hospital care, and aftercare as needed

(4) The development, strengthening, and improvement of standards and services for crippled children

621
Children in 125 diagnostic categories may receive assistance through the

State Crippled Children's Services agency. Each State determines the

conditions for which it will provide services,I2 and sets its own financial

eligAulity criteria, aside from diagnosis. Diagnostic services must be

available without charge, regardless of ability to pay, and without a

requirement for referral by an individual or agency.

Use of Funds

No special report (such as the GAO report on maternal and child health

funds) or ongoing data source has been located that provides information

on how State agencies use Crippled Children's Services formula funds.

Reserve B Projects

Crippled Children's Services Reserve B funds, hice Maternal and Child

Health Reserve B funds, have increased substantially: from $6.9 million in

1974 to $11.0 million in 1980. These funds are used to support a variety of

State clinical programs for children with physical and other handicaps, as

well as Interagency Collaborative Grants to develop programs with State

educational authorities. Over half of the CCS Reserve B funds are used for

train' ing programs.

Numbers Served

The MCHS Statistical Series also collected data on Crippled Children's

Service programs. Its last report (5) was issued for fiscal year 1973, at

which time the States reported that 513,130 children were served, or 63

children per 1,000 under age 21.

CCS Program

Number of

Children Served

Clinic services 373,336

Other services by physicians 136,192

Hospital inpatient services 84,324

Convalescent home care 4,625

Total 513,130

The NPHPRS in its overall report for fiscal year 1978 provided the

following data on crippled children's programs.

Type cf Service Provided Thousands of Persons

Health screening 548

Immunization 10

12According to OIACH. aII CCS progranss include services for handicaps that need orthopedic

treatmeut ae plonk =gay. such as deft lip, cleft palate, dub foot, chronic conditions affecting bones and

joints paralysed muscles, or cerebral palsy; and nearly an programs include services for rheumatic and

congenital heart disease. epilepsy. cystic fibromas, blood disorders, and hearing and vision problems

Requiring surnenr622
Type of Service Provided Thousands of Persons

Dental services 17

Genetic counsehog Mental health

Mental retardation

Total 1,014

Chair., Outpatient, and Other Anabulatcay Services I Thousands of Persons

Want and child health

Crippled children 365

Tuberculosis' 4t

Venereal (Incase 0

Cbrusic--dimme

Geneve ambulatory care 2 Or 5

Home bisalth care 2

Rend dialysis

Inpatient care 51

NOTE:

Because the toed. represents the estimated, unduplicated count far ens h program, figures

forindreriduid types of service for each program category add to more than the total * bias than 500.

The similarity between the MCHS Statistical Series. and NPHPRS in

the data on clinic and inpatient services suggests that the States are

reporting to NPHPRS largely on Title V-funded services. NPHPRS also developed a Crippled Children's Services and Expenditures Supplement in 19'77. The definitions regardin' g the services to be

included parallel those for the Maternal and Child Health Services Supplementactivities described in the State's Title V plan, including

those provided for, arranged for, or purchased through sources other than Title V.

The second report based on the Supplement covers fiscal year 1978 (6). It includes information about the following: (1) The number of users and discharges for inpatient hospital care

services

(2) The number of users and encounters for ambulatory care

services

(3) The number of children receiving basic or specialty assessments and the followup status of those requiring treatment Fifty-four States reported providing inpatient care to 81,321 children, and 53 States reported providing ambulatory services to 604,467 children. Because of incomplete reporting in other categories, the data will not be presented here.

Other Services

Lace MCH funds, CCS funds are used for activities other than the prevision of care. Crippled Children's Service agencies also have important attrniviictrative functions. Their activities in the area of quality

623

626
control, such as 'prior approval" for procedUres and the maintenance of

lists of providers and hospitals approved to give services are particularly

significant. Many State CCS agencies devote major attention to the

critical case management function and promote an interdisciplinary

approach to the problems of handicapped children.

PROBLEMS WITH 6111LE V

Despite the generally favorable trends in the maternal and child health

field (for example, the decline in infant mortality and the increase in both

the number of physician visits per year for children and the number of

children whose parents say they have a usual source of care), clear

evidence exists that greater improvement is possible within the realm of

current technology. Infant mortality is still very high among poor and

minority groups who also bear a disproportionate number of low-birthweight and high-risk infants. Many women still receive preiaatal care late

in pregnancy or not at all; and adolescent pregnancyespecially among

the very youngremains a medical, economic, and social problem. The

number of children reported as handicapped or disabled remains steady

or is rising; and many children are unimmuniz. ed. Primary care services

are unavailable physically or financially in many areas. Although Title V

could not be expected to solve all these problems, some experts believe

that greater progress should have been made given the sums of money

available and the flexibility of the mandate. Some of the problems that prevent Title V from reaching its full

potential have been suggested previous sections: proliferation of

programs, a vague mandate, compex funding formulas, and imprecise

reporting requirements. These and other issues can be divided into those

with a predominantly Federal locus, those largely State or local, and those

that pervade the entire field. It should be understood, however, that these

categories are not rigidproblems at the Federal level cause stress at the

local level, whereas some State problems could be mitigated by strong

Federal action.

At the Federal Level

When Title V was first enacted in 1935, it had many unique features: (1)

it utilized a new concept in Federal-State relationshipsthe formula

grant; (2) it represented a new attempt at asserting a public interest in

providing care to pregnant yeomen and children; and (3) it was almost the

only source of public funds for the health care of these populations. Title

V's vague terminology and lack of specific guidelines were appropriate

given the first two factors. The Federal Government and the States needed

to develop a mutually satisfactory method of managing the grant-in-aid.

The Sheppard-Towner Act, which also had attempted to develop State

health department programs in maternal and child health, had met with

great resistance and had been allowed to die in 1929. Considerable

flexibility was essential if each State was to find ways to proceed despite

Obstacles that included State and local medical societies and Federal and

624
State legislators. Circumstances have changed, however, and new prob- lems have arisen.

Weakness of Federal Direction

Currently, Title V's most significant problem is the absence of clear Federal crirection. Its mission in the maternal and child health field as

stated in the statute is very broad, and little guidance is provided by law or regulation concerning the methods by which this mission is to be accomplished. (The situation with regard to handicapped children's

services is somewhat better than in the other areas of maternal and child health, but many of the problems to be discussed apply to crippled

children's services as well.) Equally important is the fact that neither the law nor the regulations provide any method for monitoring State performances. Such a system would require standards setting forth what each State is expected to accomplish, an information system capable of determining whether progress is being made, and a system of incentives and penalties; none of these is currently in effect.

Proliferados of Programs

One of the consequences of the absence of clear Federal direction has been the proliferation of programs separate from the Title V agencies, which affect mothers and children. Although in its early days the

opposition of organized medicine limited what Title V agencies could do, the absence of competing programs gave them a wide choice of fields to

explore. Because there were few, if any, other places to turn for funds, the entry of a Title V agency into a geographical area or a type of medical care was welcomed. Nor did Title V agencies have to worry about duplication of services, interagency agreements, or third-party reimburse- ments. Although the Title V agencies had this freedom, they tended not to

use it and were reluctant to develop new services. Today, partially as a result of that reluctance, the situation is very

different. Title V is responsible for only a small portion of public activities

in the area of child health or women's reproductive health. Congress has authorized many other agencies in the Public Health Service, in other

sections of the Department of Health and Human Services, arid in other

Federal departments to provide health-related services to women and children. In the absence of a single agency with authority to coordinate programs, some individualS-or groups are neglected or duplication occurs. Moreover, neither the States nor Congress appear to have a clear concept of a unique role for Title V agencies at the Federal or State level at a time when many other agencies have responsibility for maternal and child health.

Leadership in this area could have been assumed by Congress by amending Title V to make its functions clearer. Alternatively, the

Administration, through its power to make regulations and to administer

the program, could have reduced fragmentation. (Some of the more recent regulations issued in conjunction with child health programs require Title V agencies to play a coordinating role, the Supplementary Security

625 628
Income program for example; but these regulations are difficult to

enforce.) Nor have the State Title V agencies shown the assertive

leadership that would have been essential to discourage fragmentation.

Experts have suggested that the EPSDT program could have been placed

in the hands of the MCH divisions of State health agencies if they had

demanded it, rather than allowing it to be assigned to the Medicaid

agency. Similarly, the tendency of State Title V agencies to focus almost

exclusively on Title V-funded programs has kept them from playing a

significant role in the development of new programs affecting women and

children, such as community health centers and ambulatory care centers.I3

Inadequacy of Reporting System

The reporting systems described earlier in this paper obviously are

inadequate for a program as large and expensive as Title V. They reflect

the absence of a clear concept of Title V's mission; and because the

Federal Government is not certain what Title V should be accomplishing,

it cannot make definitive decisions about what should be measured.

Rather than take a fresh look at the problems of accountability, the

Government has developed one system after another for collecting data

on Title Vall without links to other Federal maternal and child health

data systems, such as those for WIC, EPSDT, or family planning. Because

little use is made of what information is collected (besides Federal budget

justification), it is understandable that neither the Federal nor the State

Title V agencies give high priority to restructuring the reporting systems.

At the State Level

As a result of the Federal Government's ambiguity concerning the

functions of the State Title V agencies, these agencies have been able to do

what they wanted within broad limits, provided they could obtain support

from their legislatures and such centers of power as medical societies and

city and county governments. Although some States have developed new

and interesting approaches to maternal and child health problems, many

State Title V agencies have not been particularly innovative in their use of

funds. Their well-child conferences, prenatal clinics, school examinations,

and similar programs have remained relatively unchanged through the

1940's, 1950's, and early 1960's. The President's Panel on Mental

Retardation and the health impetus of the War on Poverty eventually

combined to bring about the prevention-treatment emphasis ?nd the

targeted approach of the Maternity and Infant Care and Children a-1

Youth projects. Similarly, Federal pressure has been required to rr

Title V agencies into family planning, mental retardation, and intensive

infant care.

13Because neighborhood health centers. and later community health centers. were funded by Federal

project grants that deliberately bypassed State and local health departments. Title V agencies could

assume little responsibility for their early development Some State Title V agencies have overcome this

barriermany have not

626
Lack of Planning Orientation

A few States have used the flexibility inherent in Title V to assess needs and to develop statewide plans for providing services to women and

children, but most have not considered such planning and development activities to be their responsibility. Rather, State Title V agencies have believed that their responsibilities were largely limited to the direction of services and programs funded by Title V or by State MCH-CCS funds. In

addition, many MCH and CCS directors, even if they have received public health training, arc clinically oriented.. As one maternal and child health

professor has noted, they believe that the way to solve problems is to open

clinics_ With this avenue closed to them because of inadequate funds, the directors would need strong guidance from regional and central offices, and perhaps financial incentives, to adopt a planning and resource

development role.

Uneven Coverage

One important result of the lack of comprehensive planning and the ad hoc accretion of programs within States has been uneven distribution of

many maternal and child health and crippled children's services. Within

each State arc some communities where superb, comprehensive, and

continuous care is offered to groups of high-risk mothers and children_ These frequently are areas where MIC and C&Y projects or handicapped

children's clinics are located, or where local health departments have developed a full range of programs. Other communities (sometimes with

equally high indicators of poverty, infant mortality, and medical underser- vice) are without Title V-funded or other programs, or have programs of limited range that depend on referrals and individual initiative to

accomplish comprehensive care. A well-child conference that refers sick

infants to hospital ambulatory care centers or private physicians is one

example. Despite the rural emphasis of the funding formula, rural areas

often are among the underserved (7). The excuse frequently given by States for their failure to extend

comprehensive programssuch as MIC and C&Y to all needy areas is

the lack of sufficient funds. This undoubtedly has been a major factor. The increase in maternal and child health services funding since the 1975

combining of formula and project funds has been insufficient to cover

medical inflation, much less to develop new projects of the magnitude of most current MIC or C&Y projects. Inflation and increased service demands also have affected the CCS programs, and some States report

that they distribute all their funds before the end of the fiscal year.

Lack of Integration with Other Programs

The belief that additional funding is the only way to bring about a more

equitable distribution of services is an example of the limited vision and

clinical orientation of many State Title V programs. With some exceptions, and for reasons discussed above, the State MCH and CCS directors

have watched but not participated in the development of both community

627
and migrant health centers and urban and rural health initiatives. Few

have viewed them as opportunities to extend the areas served by

comprehensive maternal and child health programs and some have

questioned the quality of care they provide to women and children.

Because many Title V agencies believe that their responsibility is limited

to programs operated by the State health department and its grantees and

by local health departments, they exclude from their concern not only the

Federal health centers, but also other programssuch as hospital

ambulatory care centers, health maintenance organizations, and, in some

cases, the EPSDT programthat frequently receive large amounts of

public funds. They also exclude responsibility for private care except for

such areas as standards development and quality control under payment

programs for maternity care or crippled children. The reluctance of State

Title V agencies to integrate programs funded under other auspices into a

statewide network of services has contributed to the uneven distribution of

services. By Federal mandate, State Title V agencies have had to enter into

agreements with State Medicaid, Title XX, WIC, and other agencies. In

most cases, such agreements have improved service delivery but they have

not solved the problem of service distribution.

Distrust of Community Participation

Collaboration with federally funded primary care projects is made more

difficult because of a frequently expressed dislike of community participation in the planning and operating of health services. Many maternal and

child health professionals had unfortunate experiences with "community

control" during the early years of the V. on Poverty. Although these

professionals and their agencies use volunteers and work with consumer

groups, they remain doubtful about the ability of consumers to assume the

role of full partners in decisions about maternal and child health services.

Medical Society Opposition

Another _reason why State Title V agencies have not assumed greater

leadership in ensuring a more uniform distribution of MCH and CCS

programs is the actual or anticipated resistance of State and local medical

societies to further expansion of public responsibility for medical care.

Almost all MCH and CCS directors are physicians and thus sensitive to

the attitudes of their colleagues. The medical societies also have it within

their power to seriously jeopardize maternal and child health and crippled

children's services programs by urging dna- members not to participate or

by withholding staff privileges from phyricians in public programs. In the

absence of a clear mandate, State Title V officials are wary of challenging

organized medicine.

Low Visibility

The low visibility of the Title V agency in the Federal bureaucracy is

mirrored in the individual States. The development of "umbrella agen628
cies" has resulted in public health departments that must go through

layers of bureaucracy before reaching the Governor or the legislature. Within the public health departments, maternal and child health agencies

that once reported directly to the State health officer are now in divisions such as preventive medicine or family medicine. In these divisions, the ability of MCH or CCS otricials to bring the problems of women and

children to the attention of the administration and the legislature is

limited. In addition, salaries in the State merit systems sometimes reflect this organizational arrangement, making it difficult to recruit qualified

staff.

Prejudice

Finally, in some States, racial and ethnic prejudices have led to

inequitable service delivery. Anecdotal reports still suggest discrimination

against minority practitioners and poor quality services to minority groups

(ex2minA dons of clothed children, segregated waiting rooms, and more), if not in public programs, at least in programs that receive public support. State Title V agencies have not always led the struggle against such

inequities; rather they have reflected the biases of elected officials, bureaucrats, and the general population. Both black and Spanish-speaking minority leaders have expressed a lack of confidence in the ability or desire of some States to provide services to their constituencies. Some minority spokespeople would like to see a return to Federal project grants because they believe the Federal Government is more likely than the States to distribute funds on the basis of need and to take affirmative

action in regard to minority practitioners.

Througheatt the Maternal and Child Health Field

A traditional, conservative approach pervades much of the maternal and child health profession. Although individuals in the field have much

to be proud of, and although many excellent program features exist that should be preserved, such conservatism may be contributing a loss of

leadership to planning agencies, of patients to primary health znters, and

of dollars to other programs. Examples of traditional approaches include

separation of preventive and curative care, a clinical rather than a

planning perspective, a reluctance to work closely with community health

centers. and a distrust of community participation. Closely related to these phenomena are two other problems: professional elitism and a resistance

to family-centered programs.

Professional Elitism

Members of the various maternal and child health professions are

reluctant to acknowledge that individuals without conventional certification are capable of providing the quality of care that they believe is due all pregnant women and children. This belief is understandable and laudable. Over 40 years, Title V agencies have built a reputation for high-quality

629
care. Clearly they should not lend their support to groups that cannot provide such care. Equally evident is the fact that, because of their

vulnerability, children and pregnant women should not receive substandard care. The problem resides in the equating of credentials with quality

and the all-or-nothing philosophy. Although board-certified pediatricians.

master's-level social workers, public health nurses, and individuals with

similar credentials may be essential caregivers for multiply handicapped

children or high-risk pregnant women, a primary care center with

adequate referral services may provide superb services through pediatric

nurse practitioners and community outreach workers. In many areas, a

limited service is the only alternative to no service. Rather than ignore the

limited service because it does not meet standards originally established

for another level of care, Title V agencies should assume responsibility for

ensuring that the maternal and child health staffs in all publicly funded

programs have the proficiency necessary to serve their patients, and have

available and know how to obtain services beyond their ability.

Resistance to Family-Centered Programs

Another example of how a basically sound theory may cause difficulty

in practice is the insistence of many maternal and child health care leaders

on providing services to women and children in programs and facilities

that serve these populations exclusively. This issue is very controversial

without clear resolution. Many maternal and child health experts firmly

believe that the health interests of women and children can best be served

by programs exclusively directed to their needs. Others in the medical care

field believe equally strongly that care, and particularly primary care.

should be family centered. Those advocating an exclusive approach cite

evidence from programs in the United States and Great Britain indicating

that the special needs of women and children receive less attention in

generalized programs. Because the health problems of the older population* (heart disease, cancer, diabetes, and the diseases of senility)

frequent"; are more acute and life threatening, they receive the most time

and attention. Because they are usually less severe, the needs of women

and children become secondary, and, if resources are scarce, often are

neglected. Such a priority system clearly is illogical in the long run. With

many productive years ahead of them, children's well-being can be

imperiled if they do not receive adequate preventive care or treatment for

conditions that are still minor.

Today most primary care experts, however, favor a family-centered

approach because it provides both a better perspective on the reasons for

health problems and greater convenience for the consumer. Focusing on

the pregnant woman or on the child to the exclusion of other family

members may obscure factors important in the understanding of a

disease process or in the development of a therapeutic intervention.

Parents, and particularly mothers, may find it more convenient to obtain

care in one place for themselves, their children, and other family members

rather than to travel to one place for prenatal care, another for child care,

and a third to find help for an elderly grandparent.

630
Acknowledging that the family-centered approach may lead to problems, advocates of this form of primary care believe that problems can be avoided by careful planning and a variety of strategies such as dollar allocations and development of standards. Moreover, they feel that the

advantages outweigh the risks. Many Title V officials, however, still resist the use of community health centers and other family-based facilities for maternal and child health services or, vice versa, the addition of other services to facilities and programs that are currently serving women and

children exclusively.

Extent of Problems

Any program as extensive as Title V will manifest important differences among its administering agencies. No State Title V agency has all or even most of the aforementioned problems, and none of the problems discussed

can be found in all or even most of the agencies. Some Title V agencies have innovative and progressive leaders who are shaping programs to meet current needs. Other MCH and CCS. directors are capable of developing outstanding programs, but are hampered by State policies and

regulations. But some State Title V agencies still reflect traditional concepts and practices that hinder their ability to solve today's problems. A revitalized Title V program would encourage the States that have

already tried new approaches, provide assistance to those ready to change, and force the more conservative to face current problems. At the Federal level during the past few years, the Office of Maternal and Child Health has tried several methods of encouraging State Title V

agencies to assume expanded responsibilities. The Improved Pregnancy Outcome and Improved Child Health projects promoted the use of planning and resource development strategies. A discussion paper entitled, "A State-Based System of Child Health Care," outlined problems

in the ongoing operations and suggested possible changes. The current position paper, "An Organized System of Child Health Care in Every StateNeed-Potential-Mission," offers an approach to "an organized, integrated and more effective system of health care for mothers and

children" through advocacy, needs assessment, planning, resource devel- opment, quality assurance, and other mechanisms. These activities at the Federal and the State levels deserve the support of both Congress and the Administration.

RECOMMENDATIONS FOR IMPROVING

TITLE V

Before describing a series of recommendations for improving Title V. the assumption about maternal and child health services that underlies

them should be made explicit: preventive, curative, and restorative health

care can have a significant impact on the health ofchildren and on women

with fertility-related needs and, therefore programs that attempt to

631
provide such care in a more equitable manner should be supported.

Undoubtedly, maternal and child health is influenced more by socioeconomic factorspoverty, racism, and such associated problems as poor housing, broken families, inadequate education, and harmful environmentsthan by medical care. Nevertheless, while attempts are being

made to reduce the impact of these social problems, efforts to improve the

delivery of health services should be continued and expanded.

Continue Federal-State Partnership

Theoretically it would be possible to eliminate Title V and to develop a

totally new maternal and child health policy and a new organization to

implement it. Such an approach has much to recommend it. For example,

a new organization would not be burdened with antiquated structures and nonfunctional traditions. This approach, however, is probably politically

impossible because of the popularity of Title V with Congress and the States, which perceive it as a form of health revenue sharing. Alternatively the present Title V program could be curtailed gradually

and replaced with a project grant system under which the Federal

Government would assume leadership in developing local programs. Strong arguments have been made for this method ofincreasing Federal

direction and control, a method which would also eliminate many of the

State-based problems in the current State-Federal partnership. This

approach, however, while less politically offensive to Congress, probably

would not be viewed favorably by the States. Moreover, it ignores both

the problems inherent in federally administered programs and the positive

effects of State participation. This country may be too large and maternal

and child health services too diverse to be managed centrally or even

through regional offices. Although the Community Health Center's

Project is administered successfully from a central office, its program is

more limited, aimed specifically at providing primary care in underserved

areas. The broader Title V programs encompass primary, secondary, and

tertiary services and educational and other preventive programs, as well as

research and training. Moreover, responsibility for public health is an important function of

State government. Each State has a health department and a health code.

Title V agencies can use these important resources to build programs and

to enforce standards. A Federal project grant would neither utilize State

planning capacity, nor build the system of maternal and child health care

that clearly is essential. More likely, it would cortinue or worsen the

fragmented array of services that currently characterizes many States.

Specify Title V's Mandate

The first essential step in the u f rovement ofTitle V must be taken by

the Federal Government The responsibility of Federal and State Title V

agencies to ensure that children and ;PI( women with fertility-related needs

receive high-quality care should be rr, clear. Implicit in such a mandate

632 Gob 4
is the belief that Title V agencies have a responsibility for the health needs of all mothers and children, not just those served by Title V-funded

agencies. For some States, this will be a significant change. The assurance rule would involve working with primary care centers, hospital ambulatory care programs, schools, local health departments, and other agencies to develop networks of facilities that could both provide primary care to mothers and children and monitor the quality of care in

such facilities. If no primary care facility was available in an area, the State Title V agency, in conjunction with the local Health Systems Agency, could assist community groups in applying for the appropriate State or Federal funds. State Title V agencies also should work with Medicaid, Title XX, and other funding sources to raise payment levels for maternal and child health services so that more providers would

participate, to increase the numbers of mothers and children eligible for Medicaid and other payment programs, and to monitor the level of care provided through such programs. A similar role should be played by State Title V agencies in regard to secondary and tertiary care: developing

networks, monitoring quality, educating providers, and demonstrating

new services.

The State Title V mandate should also include planning because it is unlikely that the problems of mothers and children will receive adequate

attention from the local Health Systems Agencies or their State of Federal counterparts. Collaborative activities with these agencies, however, should

strengthen the Title V agencies' ability to improve maternal and child health by making them part of a larger advocacy group that has the

resources and skills necessary to plan adequately and the statutory

responsibility for the approval of certain types of Federal health

expenditures."' The new mandate would also mean increased activity for the Federal Title V agency. Its advocacy role would be crucial both in convincing Congress of the continuing needs of women and children and in working with other agencies to ensure that these populations receive adequate

attention. If the State Title V agencies were to assume the functions just described, the Federal Title V agency would need to provide a variety of suppoilive services. Federal and regional offices would require personnel with planning and other types of expertise to assist the States in assuming

their new roies. State maternal and child health plans would have to be monitored carefully, funding requests for demonstration projects would

need to be evaluated, and consultation services provided in many areas.

Revitalization of State Plans

If a new mandate for Title V was accepted by Congress and the Administration, a wide range of actions would be required to implement

141The concepts described in this paragraph and in the section that follows on Itevitaliestion of State

Plane' are sinniar to those expressed in the Planning Manual for the Use of State MCI-I and CC Directors

in the Development of a State Plan, developed in 1979 by a Committee of the Association or state and

Territorial Directors of Maternal and Child Health and Crippled Children's Programs, chaired by John C.

MacQueen..

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66
it. Perhaps the most basic change needed would be in the mechanism by

which Title V funds are awarded to the States. Although the Title V

statute makes approval of "a State plan for maternal and child health

services and services for crippled children" a condition for receiving

funding, little attempt has been made to use the State plan as an

instrument to bring about change. In fact, present State plans have little

significancethe Office of Maternal and Child Health has not required

them to be submitted to Washington or to the regional offices since 1968.

Although the plans must be available for inspection by regional officials in

State Title V agencies, there is little evidence that anyone reads them

except to check that they meet certain statutory requirements. Consequently, most States have ceased efforts to produce meaningful documents, and only superficially update their plans every 1 or 2 years.

Because the statute requires approval of the plans as a condition of

funding, these plans could be used to implement the new Title V mandate.

No legislative change would be needed because Section 505 of Title V

allows the Secretary to require reports and to determine their form and

content. If the State plans were viewed as a mechanism for implementing

a new Title V mandate, however, it would be necessary to specif what the

plans were to include and to assign staff to read the final documents and

to determine whether or not they met standards for funding in whole or in

part. One approach would be to require each State plan to include (1) an

analysis of resources currently available and plans for improvement where

necessary, (2) a set of performance standards and proposals for achieving

them, and (3) a report of progress in both areassince the submission of the

previous plan. The resource analysis should include information on

services available to children and.to women with fertility-related needs in

every subdivision of the State. Among the possible subdivisions would be

counties or State health areas as designated by the State Health Planning

and Development Agency. For each subdivision the State should be

required to show the sources of primary, secondary, and tertiary care for

children by age group; and for women with fertility-related needs,

including pregnancy and delivery, family planning, and infertility. These

resources should include programs of local and State health departments; federally funded primary care centers; programs based in schools,

Head Start, and day care centers; hospital facilities including ambulatory

services; health maintenance organizations; National Health Service

Corps stations; privately funded organizations, such as Planned Parenthood Clinics or Easter Seal services; private physicians; and other

resources. The plan should indicate financial and other eligibility criteria

for public programs, and the availability of Medicaid and other programs

such as Supplementary Security Income or Title XX programs to finance

care not available without cost from public programs.

Once all resources were catalogued by area, it should be possible to

indicate areas in which public facilities we inadequate or in which

women had insufficient incomes to purchase the available services. The

States would then be required to explain now they planned to alleviate the

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G 3
needs of the populations is these areas. Examples of activities directed at underserved groups might include the following: (1) Regionalization of secondary and tertiary care centers with

transportation provided so that individuals in need of such

services could be brought to them. (2) Requests for National Health Service Corps personnel to serve in

areas without resources.

(3) Modification of service; currently provided by public programs

in order to meet more needs. For example: (a) Converting well-child conferences into pediatric ambulatory

services providing all types of primary care; and

(b) Expanding school health services into facilities providing all

types of primary care to school-age clients. (4) Assisting hospitals in developing ambulatory facilities for chil- dren and for women with fertility-related needs. Depending on

location and resources, these could be primary care facilities providing preventive as well as treatment services, or secondary or tertiary centers, treating individuals with complex problems. (5) Assisting communities in developing applications for primary

care project grants that would include children as well as women with fertility-related needs. (6) Negotiating with State Medicaid agencies about coverage for populations neither covered by public programs nor able to

purchase private care. The plan might indicate that all other possible resources had been

exhausted and that the only way of providing needed services was through additional Federal funding. To meet such needs a special fund for demonstration projects would be set aside. State plans in this new format would need to be carefully reviewed in

the regional and Federal offices to ensure that they were comprehensive

and correct. The facilities listed as available for providing care to women

and children should be checked against a list of primary care project grants, National Health Service Corps placements, hospital listings, federally supported health maintenance organizations, local health depart- ment services, and other public programs. If any facility that was providing or had the potential for providing services was omitted, the State would be asked to explain. In some cases it might be that the facility, a rural health center for example, was not meeting the State Title V

agency's standards for MCH or CCS programs. This information would

then be transmitted to the facility's funding source for appropriate action. In other cases, the State Title V agency might not have the authority to

change the service delivery pattern of a facility, for example, a county health department Again, this information would be discussed with Federal and State officials.

During the review process, special attention would be paid to areas known to include large numbers of poor and minority populations and to

rural areas. Plans would be expected to show evidence of targeting of services to these traditionally underserved groups.

6

635
A second required component of each State plan should be a set of

performance standards and plans for achieving them within a 2-year

period. The Federal Title V agency in cooperation with representatives of

State agencies and others in the field of maternal and child health would

select service areas in which performance standards could be established.

The regional office could then work with each State in deciding which

standards were applicable for that State. For example, a State where the

infant mortality rate was significantly above the national average might be

required to set a goal of reducing that rate by a specified amount within 2

years. Another State with a low infant mortality rate could be required to

emphasize another area, such as percentage of children diagnosed as

having a specific condition who were referred for and actually obtained

treatment. The third required component of each State plan should be a

progress report describing in detail the State's accomplishments since the previous report, with special emphasis on development of needed

resources and achievement of performance standards." Because the State plans in this new format would require considerable

time and effort, they probably should be developed for 5-year periods with

updating required every 2 years. In the intervening year, only a shorter

progress report would be submitted. State Title V agencies should be

required to develop their plans jointly with State health planning agencies,

and consumer input should also be mandated.

Revision of Reporting Requirements

Unless current reporting requirements are revised, Federal oversight of

State performance under the new mandate would be difficult if not

impossible. The Federal Title V agency should decide what specific

information is essential, and regulations or guidelines should be developed

reflecting these decisions. Data systems should be developed to permit

Federal, State, and local authorities to determine not only how Title V

funds are being spent and the numbers and characteristics of the

population served, but also the services that were or were not received.

These systems should also make it possible to determine the cost of

services at various sites.

Regulations regarding financial accountability should not only encompass the information to be provided, but also should indicate uses of funds

that would not be allowed. For example, some States now take a

percentage for overhead from the State Title V formula funds. Should this

be permitted? Many States distribute a considerable portion of their Title

V formula funds to local health departments to support their maternal and

child health programs. What degree of control should the State have over

the use of those funds? Should support of research, State laboratories, vital

statistics sections, and other projects be permitted? Decisions on these

'5OMCH has begun to encourage State Tide V agencies to undertake this type of planning. Recently

issued -Guidelines- fie both an Objectives and Activities Report and an Annual Program Performance

Report discuss measurable objectives, activities to accomplish them. and comparison of actual

achievements with objectives. These guidelines stress services for all mothers and children, and

cooperative atrangemen3 with other health-related programs.

636
matters cannot be made until a new set of report forms makes it clear how

funds currently are used. Additionally, a series of outcome and performance standards to

measure program impact should be developed by Federal officials in

collaboration with representatives of State Title V agencies. Outcome

measures should be based primarily on data already available to the State

through birth and death certificates, hospital admission and discharge

records, communicable disease reporting, and similar sources. Periodically, States might want to use their funds or might apply to the Federal Government for funds to do special studies that would require the

collection of new information through sampling of records or household

surveys. The data systems upon which accountability is determined also

should provide the States with the information necessary to demonstrate needs and to prove progress.

Changes in Administrative Structure

The placement of the Federal Title V agency in the Federal bureau- cracy should be reviewed. Although the Office of Maternal and Child Health's present position within the Bureau of Community Health

Services is logical in terms of its service delivery role, an expanded role in

advocacy, interagency collaboration, and planning would suggest place- ment higher within the Public Health Service. An expanded Federal staff with different skills would be essential for implementing the proposed

recommendations. Additional staff members would be needed to work

with the regional offices and the States. The new emphasis on planning

and resource development would require the recruitment of individuals with skills in planning, development of data systems, administration, and

related areas, in addition to those with traditional clinical skills.

These recommendations would apply to the regional offices as well, where additional maters al and child health staff would need to be chosen

on the basis of abilities in the new areas of emphasis. These staff members should be in positions that enable them to bring the power of the Federal Government to bear on the solution of State problems. States may also wish to change staffing patterns. For example, a State may want to appoint an individual with training and experience in

planning, administration, or a similar field to serve as director of its MCH

or CCS program This appointment would require a change in the Federal regulations, which currently require that a physician be the director.

New Emphasis in Training

In 1980, most of the Title V training funds were used for training

clinicians. If the new mandate were adopted, however, a large number of professionals familiar with maternal and child healthbut with skills in planning, data analysis, administration, and related areaswould be necessary. Federal priorities would need to be shifted to make funds available for the training of such individuals. The Federal planning

637

6403
agencies should be consulted to determine the feasibility of collaborative

training programs.

Increase in Title V funds

A significant increase in Title V funds would be necessary to implement

the programs described. To assist the State Title V agencies in their

transition to a new mandate and a new State plan format, additional funds

should be made available for collecting the information necessary to

develop the resource analysis and the performance standards. Five million

dollars per year for 2 years probably would be sufficient and could be

distributed among the States on the basis of population.

Another mechanism for assisting the States and for providing an

incentive for planning would be a resource development tund set aside in

each State's Title V maternal and child health and crippled children's

services allocation. States would apply for permission to use all or part of

this resource development fund for community projects where need had

been demonstrated in the State plan. The Federal Title V agency, in

consultation with the regional office, would determine if the project was

essential and would release the funds accordingly. Because the resource

development funds would be intended to serve as a source offinancing for

demonstration projects, the States would be required to develop plans for

the gradual phasing out ofTitle V funds for each demonstration. If a State

was unable to prove its need for any or all ofthe resource development

funds, they would revert to the Federal Government for direct funding of

projects in underserved areas, preferably in the same State.

Changes in the Formula

Additional changes in the formula for distributing Title V funds should

be considered. The rural emphasis of the formula is particularly in need of

reevalution. Evidence suggests that it has not been successful in targeting

services to rural areas. Also, many urban areas currently have the worst

maternal and child health problems. A formula based on either the

percentage of children and of women of childbearing age in medically

underseaved areas or on the proportion of children in povertyrather

than on births and rural settingmight provide a more equitable

distribution of funds. The continuation of the supplemental 516 funds and

the impact of that section on the States receiving those funds also should

be studied.

Penalties for Noncompliance or Poor Performance

To move the States into their new roles, disincentives also might be

necessary. Currently, if a State is not in compliance with the law, the

Social Security Act only provides for a total loss of Title V funds. This

638 641
penalty has never been carried out and should be removed from the

legislation as impractical because its enforcement would penalize the

recipients of services more than the Title V agencies. Nevertheless, the stipulation that Title V funding is dependent upon the

receipt of an acceptable State plan should carry with it a penalty. The Federal Title V agency should have the right to withhold all or part of the State Title V agency's allocation if it cannot produce an acceptable plan, if only part of the plan is acceptable, or if it cannot show evidence of satisfactory progress in resource distribution or performance standards. The withheld funds would then be made available either to another

agency in the State (such as a medical school or an agency that could

develop r z acceptable plan) or, as a last resort, to a team of Federal employees who would administer the program until such time as the Title V agency was able again to assume responsibility for its own program. In

effect, this would be a form of receivership and by its mere presence in law

or regulation would provide the Federal Government with a threat that it

could use to help motivate State governments. An additional, but less

radical penalty, would be the loss of resource development funds in cases where the need for such funds was inadequately documented in the State plan. Appropriate processes to prevent unfair decisions would be essential.

Continuation of Crippled Children's Services Progriun

Any attempt to change Title V should give considerable attention to the need for continuing the Crippled Children's Services Program as a

separate entity. In the era of Medicaid. the Supplemental Security Income Program, the Education for All Handicapped Children Act, and other Federal and State programs for children with special needs, the CCS

program must have a unique function to justify its continuation.

A recommendation regarding the CCS program, however, would svicw. premature. More information is needed about current program operati and the potential for other funding sources. Moreover, States cannot be

expected to completely reorganize all existing programs; changes should

be undertaken gradually. A radical shift in the CCS program before other mechanisms are in place would jeopardize the well-being of a very

vulnerable population.

CONCLUSIONS

Title V is one of the oldest Federal health care programs. Moreover, there can be little doubt that its services have improved the health of

mothers and children. But times change, new problems appear, and new

responses are necessary. The proliferation of other programs with mandates to improve maternal and/or child health suggest that the Title V

agencies are experiencing difficulties in accomplishing their legislative missionor that they have done an inadequate job of explaining that

mission.

639 62
The recommendations in this report are based on the assumption that a Federal agency and State agencies where the sole function is to protect the health of children and women with fertility-related needs are still

necessaryeven in an era of family-based care. Theoretically at least, a

Federal-State partnership appears to be the most suitable mechanism for ensuring that these populations receive the health care they need. And, because Title V agencies have a long history in this area, their

continuation is urged. Mothers and children are the ones who need protection, however, not

the agencies. In recent years the performance of some State Title V

agencies has been poor. The continuing high rates of infant mortality in

certain areas, the fragmented approach to children with severe handicaps,

and the neglect of adolescent pregnancy until recently, to cite just a few

examples, show lack of leadership and reluctance to stray from conventional programs. The outstanding performance of other States, however,

suggests that the problem is not inherent in the Title V mechanism itself.

This report urges a new mandate for Title V and new procedures for

implementing it. Other organizations both within and outside the Federal

Government also are examining Title V and making recommendations.

Whatever approach is taken should be closely monitored. In principle, the

Title V agencies can be revitalized and the process can have a measurable

impact on maternal and child health. Nevertheless, Congress and the

States should be prepared to place the health of women and children

above the survival of agencies, and to develop a new system if this

revitalization does nc succeed.

APPENDIX A

The Social Security Act Public Law 271-74th Congress Enacted August 14, 1935

TITLE V-- GRANTS TO STATES FOR MATERNAL

AND CHILD WELFARE

Part 1 Maternal and Child Health Services

Appropriation

Section 501. For the purpose of enabling each State to extend and

improve, as far as practicable under the conditions in such State, services

for promoting the health of mothers and children, especially in rural areas

and in areas suffering from severe economic distress, there is hereby

authorized to be appropriated for each fiscal year, beginning with the

fiscal year ending June 30, 1936, the sum of $3,800,000. the sums made

640 G.1
available under this section shall be used for making payments to States which have submitted, and had approved by the Chief of the Children's

Bureau, State plans for such services.

Part 2Services for Crippled mild en

Awn:pried=

Section 511. For the purpose of enabling each State to extend and improve (especially in rural areas and in areas suffering from severe

economic distress), as far as practicable under the conditions in such State, services for locating crippled children, and for providing medical,

inimical, corrective, and other services and care, and facilities for diagnosis, hospitalization and aftercare, for children who are crippled or who are suffering from conditions which lead to crippling, there is hereby authorized to be appropriated for each fiscal year, beginning with the

fiscal year ending June 30, 1936, the sum of 52,850,000. The sums made available under this section shall be used for making payments to States which have submitted, and had approved by the Chief of the Children's

Bureau, State plans for such services.

REFERENCES

(1) General Accounting Offka. Barter Mtenagement and Mara fusautwome Needed so Strengthen Federal Efforts so haprove Pregemer Cencosna.(FIRD410.24),Jazmary21.1990.

(2) Benno of Comassaity Heath Services. Massraal and Cold Hada Services of Sone and Local

Health Dworman. Moral Years 1974 197A 11978. Rockville, Md.: U.S. DREW, 1979

(3) The Association of Stag and Twinned Health Officiele. Services. der and Programs of State and Tambora Health Agencies. Fiscal Year 1978. Notional Pablic Health Program Reposing; Spasm Jaireary 1990.

(4) Asociasion of State and Territorial Heads OfficiUk. Senesed Tula V Mesernal and Chad Health

Service; Fiscal Year 1978: A Report on the Seemed Year ore Mammal and Clad Health Statistical

Data Set. National Public Head) Program Reporting System. Fair:wry 1900.

(5) Biwa= of Cosainsmity Health Services. Childben who Received Physical as' Services order the

Crippled OsaldrenV Program; Mscal Year 1973. Rockville, Md., 1977.

(6) National Public Health Program Repotting System. Selected Tide V Crippled Children's Service*,

Fecal year 1978. Association of State and Territorial Health Official. February 1990.

(7) Davis, L. and C. Schoen. "'Modica Care for Mothers and Children: The Maternal and Child

Health Prograse I.e Health and the War 0, Poverty: A Ten-Year Appraise' /. pp. 142-144. washingion. D.C.: The Brookings Institution. it/S.

641
THE EFFECTIVE INTEGRATION

OF MATERNAL AND

CHILD IaALT1-1 CONCERNS

INTO THE GENERIC HEALTH

SYSTEMS :PLANNING PROCESS

by

MARY ANN HOLOHEAN. B.A. I

PURPOSE AND SCOPE

No mechanism or set of mechanisms currently exist for the effective

integration of maternal and child health care needs within the health

planning structure of th United States. In part, this is a result of the lack of as effective structure for pinlirling within maternal and child health

programs. Effective integration of maternal and child health care into the health plinning process can be Accomplished only if a major reform

occurs in program planning for matc-nal and child health. anld advocates have frequently sessed the importance that children have health problems quite separate from those of adults and that the maintenance of good health in childhood is essential to lifelong health and

intelligent health behavior. Therefore, p/2inTli-ng for children should have high priority in the development of overall plans. This basic theme is

reflected in the prologue to the Michigan Child Health Plan, developed by

the Michigan Chapter of the American Academy of Pediatrics. A truly effective plan nu t fragment care of the child . . . factors

outside the health care _,,stem profoundly influence the health status of children c...ad profoundly interfere with delivery of health care under the present system. Income, nutrition, housing, environmental factors, general and health education, racial and social discrimination and availability of transportation are all factors not susceptible

to manipulation by the present health care delivery system. Failure

to recognize these factors, especially as they relate to child health, and to plan objectives in these areas, will doom any health care planning to incomplete and inadequate improvement in health status of the target population . . . Objectives in these areas are not the

'Office of Health. Department of Health. State of York, Albany. New York.

643

64 5
primary charge of the (health services agencies) at this time, but we

encourage their inclusion since they exert an effect on health status

as profound as any other factors. currently represent the major

obstacles to improvement of health status(1).

This statement presents, in effect, a view of child health concerns that

recognizes the significanceindeed the necessityof a systems reference.

It is this systems perspective that informs the best of overall health

planning activity.

BASIC ASSUMPTIONS

Planning has been described as anticipatory decisiortrnaking: the

designing of a desired future and the effective ways of bringing about that

future. Planning is commonly based on five basic premise

(I) Change is desirable

(2) Ordered change is possible and at least partially influenced by

human beings

(3) Future events can be influenced for the better

(4) Conscious commitment to action, or the intent to intervene, is

preferable to passive inaction

(5) Choices must be made and limited resources allocated

Assumptions based on these premises are stated in the California State

Health Plan, 1980-1985 and specify that the role of health plannibg is to

articulate (1) ways to protect and improve the health status of all people

living and working in the State, and (2) ways to increase the efficiency and

effectiveness of health resources in the State. Although health status and

the health systems are usually thought to be related, the connections are in

fact complex and for many health problems, not yet demonstrated. Thus,

effective health planning must be based on four assumptions. These

assumptions form the foundation on which the contemporary health

planning movement is built (2). First, health status, or the level of health of an individual or a

population, is the product of four related bit distinct factors:

Human biology Environment

Behavior

Health care services

This model implies that an enormous range of social factors has an impact

on health status. As this understanding grows, the notion of a "health

service" expands. Whereas "health care" was once synonymous with

"medical care," it now encompasses many services and activities unrelated

to traditional providers such as physicians or hospitals. The "health

resources" for health planning expand correspondingly as the roles of

biology, environment, and behavior become clearer.

For purposes of health planning, a second assumption is the existence of

a "health system," including the resources needed for health services, the

variety of services offered, and the results or "outcomes" of having

services available. However, this system encompasses a wide range of

human services including job availability, income maintenance; housing,

644 6/16
education, utilities, recreation, and social services; all of these services are part of the "environment" that influences health status and competes for

resources used by the health system. A third assumption, as described in the California State Health Plan, is

that the ultimate task c health planning is to develop a set of policies and

actions to influence the character of health care over time. These policies provide the direction, inspiration, and justification for the necessary decisions made by comuraers, providers, payers, and all levels of government to resolve i --Zth problems and to realize change. Finally, health systems planning assumes that health policy is rooted in deeply held cultural values concerning (1) the nature of life, (2) the meaning of death, (3) the reality of individual choice, (4) the proper role of government and, (5) the relationships among rights, responsibilities, and power. Such values, which vary widely among individuals and groups, complicate discussions of health policy by introducing a measure of

irrationality and considerable controversy. The controversy may be modified by new research results, new theories, and new technology, but, again, it may not be. The process of planning is thus, perhaps most

importantly, a mechanism for revealing and resolving widely divergent opinions. These assumptions imply that health systems planning is concerned with 2. level of comprehensiveness best articulated by Henrik Blum in his 1974 book, Planning for Health (3). Blum described comprehensive planning for health as being concerned with: All manifestations and consequences of departures from health

and all inputs to health All parties involved, including joint action among the major levels of governmentFederal, State, regional, and local; joint ventures among the public, semipublic and private medical interests; joint ventures of the health professional and with the health laymen

and consumer; joint ventures between the various subsections of

the health world; and the marriage of technology and politics All aspects of health care All aspects of the planning process including more efficient

planning techniques, making conscious choices among the modes of pLwnning and among the roles and functions open to a planning

body once it understands what alternatives are available and what

these options offer to the community Concern with planning at all levels, including appropriate activities at all levels of planning and relationships between levels Concern for guidance of a complex social system A growing number of children reportedly reflect illnesses or health problems fundamentally associated with social ills: namely poverty, degenerating environment, nutritional deficits, accidents, and psychocultural factors (4). One effect of the distribution of child health problems is

to create groups that focus concentrated energy and political attention on

the treatment of chronic problems. This focus tends to dissipate concern

and attention from the systemic causes of child health problems. Thus, an interesting parallel exists between child health and health

systems planning: both require a systems perspective for effective

645
resolution of problems, yet both are hampered in the quest for that

perspective by immediate pressures for resolution of specific problems.

With respect to health systems planning, this pressure is in the form of

Federal Government demands in that health planning agencies demonstrate success in cost containment. In child health, the focus is often on

the treatment of a single manifestation of the problem of child health

rather than on causative factors.

The value and aspirations that underlie contemporary health systems

planning are assumed to be fully compatible with those underlying child

health advocacy. In fact, concern for child health is much more in keeping

with the original purpose of health systems planning than the more narrow

issue of cost containment in the health care industry, which has c= onsumed

so much of the health planning movement's energy in recent times: This

assumption naturally leads to a second, namely that attitude and shared

understanding, more than specific technical approaches, are the critical

precursors to the integration of child health into health systems planning.

The systems perspective facilitates two additional assumptions. First,

the integration of maternal and child health must occur at all levels of the

system to ensure effectiveness. Attention must be focused at the:

Federal level, where much of the organizational fragmentation

originates in maternal and child health

State level, where the major decisions are made regarding

maternal and child health resource allocation, and

Local level, where children and their parents manifest health care

needs and receive services

Second, to be effective, the integration of maternal and child health

concerns into the general health systems planning process must occur

throughout this processincluding its public education, planning, reguL.-

tory, and technical assistance aspectsrather than exclusively at any one

point in the process.

BARRIERS TO AND INCENTIVES

FOR INTEGRATED PLANNING

Numerous barrierssome traditional, some of more recent vintage

impede the integration of child health into general health systems

planning. Some of the significant barriers to the participation of maternal

and child health interests in health systems planning are described as

follows:Disagreement with the concept of decisionmaking that underlies

health planning, involving as it does a wide variety of interests

that characterize health systems planning, and a strong sense on

the part of maternal and child health professit,z:-.1 that the

requirement for a consumer majority on health planning agency

boards results from a "distrust" based on experience or of those

responsible for the health system. Maternal and child health professionals and advocates often view

health planning boards as dominated by persons who are

insensitive to and lack knowledge about maternal and child health
needs and therefore, fear that categorical perspective will be lost because maternal and child health services are competing with a wide variety of other health care interests. Considerable pressure on health planning agencies at both State

and local levels to control the cost of physical health care through

limiting hospital expansion and purchase of equipment has led

some maternal and child health advocates to believe that health

planning agencies will have limited time for and interest in maternal and child health.

Few incentives exist for maternal and child health advocates to

engage in integrated planning activities because they perceive few

financial rewards accruing from such involvement, and the benefits of coordinated planning do not outweigh the tir le and

effort spent away from direct provision of maternal and child

health services or program planning activities. Significant barriers to health planning agency integration of maternal and child health include the following: Maternal and child health professionals and advocates are often

not represented on either statewide health coordinating councils or on health systems agency boards. The pressure on health planning agencies to demonstrate success- ful cost containment combined with funding limitations has caused many planning agencies to focus their activities on the

institutional health system, a system with only limited relevance to

child health concerns.

Preoccupation with cost containment has also resulted in the

commitment of a substantial amount of planning agency resources

to regulatory functions, particularly those activities related to

"certificate of need." Particularly in small agencies, this often

results in very limited attention to the resource development activities and preventive health strategies that are natural allies of child health efforts.

Unique requirements and processes for maternal and child health program funding requests often do not fit the general review

criteria used by both health services agencies and statewide health

coordinating councils in their review and evaluation of proposed projects. Effective evaluation of proposals requires the develop- ment of, (1) a knowledge base specific to maternal and child health needs and, (2) a set of criteria appropriate to these

programs; neither exists at present The variety of funding sources and administrative systems for maternal and child health services at the Federal, State and local

levels complicates efforts to integrate planning. In spite of these serious barriers to integrated planning, significant

incentives do exist for increased integration. These include: Key elements in the maternal and child health field, including the American Academy of Pediatrics and child advocacy groups, are

encouraging the participation of their members in health planning

activities.

The role of the health planning system and its impact on future

647

619
maternal and child health services, especially through reviews of Certificate of Need and appropriateness related to child health, virtually mandate the participation of maternal and child health

interests in the health planning system. Increased block grant and revenue sharing funding would mini- mize categorical funding for maternal and child health services unless maternal and child health advocates are actively and

purposefully involved in health system planning

Improved data collection and analysis in maternal and child

health are possible through integrated planning activities. The population-based planning perspective that is characteristic of health systems ploYming has the potential for encouraging prevention, health education, and community health promotion services and activities, all of which are particularly relevant to child health.

CURRENT EXPERIENCE IN INTEGRATING

cituur HEALTH CONCERNS INTO

HEALTH SYSTEMS PLANNING

The roles and responsibilities of health planning agencies at the State

and regional levels can be grouped into five general categories. (See table

1.) Each of these categories has the potential for increasing agency activity

in the area of child health.

TAME 1. Health Planning Agency Roles and Rervonsib.-Illiee

Planning

Issue identification

Plan development Flaming guiciance

f4eeds anatysis Health status-health

resource studies

Target area analysis

Policy adVICO and/or formulation

Policy analysis Policy recommendations Legislative program review

Capecitj building

Agency management Dam management Methods development Research

Technical assistance

Board-council support Continuing education

Regulation

Certificate of need

Federal funds review

APPropriateness review

Program development

Public education

Advocacy Plan implementation

Interagency agreements Coordination

in spite of a gi.a.,.."Tal perception to the contrary, survey evidence

indicates that a substantial amount of attention to child health has

648

6 5 0
transpired at the health systems agency level. This attention has been

focused primarily on the agency's planning role. In addition, a large number of agencies have addressed the issue of obstetric-pediatric bed

supply, but primarily in the context of acute hospital bed need rather than

within a broader maternal and child health perspective. A recent survey by the Boston University Center for Health Planning of

HSAs throughout the United States indicates that health systems agencies have focused primarily on five areas within child health: infant mortality; prenatal care; teenage pregnancy and family planning; immunization and

general prevention; and fluoridation, with special emphasis on fluoride

rinse programs. A summary of the manner in which HSAs have addressed

these areas is briefly outlined below.

Infant Mortality

Problems Identified

Rate variations by area and by reason for variance

Associated factors including race, age of mother, area (urban, suburban, rural, elevational), birth weight, service availability

(hospitals, clinics, manpower)

Recommended Solutions

Goal setting related reduction of mortality rates Study and expand accessibility to services, with attention to

regionalized perinatal services; study expanded use in hospitals and clinics of nurse midwife, ntese practitioner, physicians assistants

Inclusion of health education in perinatal services, including

dietary counseling and family planning Funding-reimbursement support and expansion of Women, In- fants and Children (WIC), 4/e4aternity and Infant Care (MIC) programs; improve third-party reimbursement; seek demonstration grants The development of more comprehensive data bases in cooperation with PSRO's and State health departments

Prer'ital Care

Problems Identified

Problems with service delivery are related to public awareness, accessibility, low utilization, quality (including the effects of service quality on infant-maternal deaths), nialdistribution, and

lack of coordination

Problems with education are related to child birth, prenatal, parenting, family planning, high risk factors (particularly to teens and minorities)

649
The reimbursement system is inadequate for prenatal care and

education

Training of nurse midwives, nurse practitioners, and staff of

hospitals providing obstetrical services is not uniformly adequate

More on the above problems is needed as well as on the number

of women receiving care and the relationship of low birth weight

to extent of prenatal care

Recommended Solutions

Services: Develop network of regionalized perinatal services,

education programs and outreach programs; recruit medical

doctors to underserved areas; increase ambulatory care coverage

Education: Evaluates extend, and develop new public information

campaigns, with particular attention to populations at risk

Reimbursement: Encourage third-party payers to cover prenatal

education as well as other prenatal care services and support the

establishment of better reimbursement rates and methods

Training: Provide education and support for nurse midvr:ves,

registered nurses, physicians assistants, and nurse practitioners

and support childbirth education campaigns in hospitals providing obstetrical services Data: Work with PSRO's to develop more comprehensive data

bases on areas of need, utilization of services, outcomes, etc.

Family Planning

Problems Identified

Services: Lack of data to support need for services in many areas;

insufficient services where need is documented; lack of knowledge

of or interest in services where the need is documented

Funding: Lack of funding for programs and insurance coverage

for program services

Documented Solutions

Services: Review current services and expand where necessary;

establish family planning clinics; develop sex educationfamily

education programs in schools and coordinate referral programs;

provide hospital services during post partum period; develop

outreach programs for teens and other high risk populations; and

develop data and assessment programs Funding: Support legislative efforts to change third-party payer

insurance; increase levels of Title XX and Medicaid funding; and

use of Medicaid funds for abortions

650
Teenage Pregnancy

Problems Identified

Mortality rates: Teens are at risk for low birth weight, birth

defects, and high infant mortality rates Education: Lack of educational programs and family planning

services for teens; controversy over parental consent requirements

Recommmended Solutions

Education: Expansion of in-school and outreach programs for counseling, contraceptive information, prenatal care, family r lan-

'ling, and parenting Legislation: Laws regarding parental consent for education

services and for abortions should be reexamined and amended

Funding: Funding sources and innovative demonstration pro- grams should be investigated

Immunization

Problems Identified

Education: Present immunization legislation is not properly

enforced; little or no consumer realization of the importance of

immunization has been noted

Service: Physician shortages, lack of transportation Reimbursement: Lack of third-party coverage

Recommended Solutions

Legislation: Present legislation should be enforced and new

legislation developed to delineate responsibility for immunization

and enforce compliance Education: Public awareness and outreach programs should be developed, special clinics set up, and coordination between school districts and providers improved; improved strategies should be developed to ill=eaSC levels of immunization, including betzer health education, enforced school entry requirements, hospital discharge planning. health department tracking programs, and Public Health Code amendments to clarify requirements A series of interviews with health systems agency staff members indicate

that three major problems hamper HSA activity in the child health area:

fragmentation of programs, Federal and State emphasis on regulatory

activities, and lack of data and methods to facilitate small area targeting

and to idendfy local manifestations of the "new morbidity."

651
Fragmentation of Programs

Ironically, various government interventions have significantly contributed to what health planners perceive to be the major problem with child

health carefragmentation of programs and services. A definite lack of

continuity is present in primary care among private practice physicians,

public well-child clinics, school health programs, and numerous other

"providers" established to overcome problems of access to services.

Fragmentation of care is most dramatic for handicapped children. L

additi,n, little coordination occurs between the child health system and

other systems such as education and social services. For example, the

multiple needs of unwed teenage mothers require intersystem cooperation,

which is often lacking.

Federal-State Emphasis on Regulatory Activities

Health systems agencies from various parts of the Nation report little or

no cooperation with their State health planning and development agencies

concerning child health; the preoccupation of these State agencies with

regulatory issues is a possible explanation.

Lack of Data

Some HSAs perceive a need for additional national data and guidelines

in the area of child health. However, most indicate that their foremost

problem is lack of data and analytic methods to deal with the small area

targeting, which is so essential to effective intervention in child health

problem& An additional problem is the lack of data (and the inapplicability of traditional sources) for analysis of that set of childhood health

problems termed "the new morbidity." Health planning related to child health exists to a lesser degree at a

nationwide State level than it does at the HSA level. Although several

States have included the broad concerns of child health in their State

health plan, many more have limited their activity to regulations of

obstetric and pediatric acute care and the regionalization of tertiary

services such as neonatal intensive care.

Likewise, the States are more restrained in their planning efforts, as

compared to the HSA level, by what Beverlee Myers terms the

"proliferation of categoricarograms, further complicated by differing

eligibility, requirements and multiple reporting mechanisms, that characterizes child health" (5). In States where the statewide health coordinating

councils have shown interest in including the Title V Plan in their Federal

fur Is review, the tendency of State Title V agencies to focus almost

ext.. usively on Title V- funded programs apparently means that their plans

are in effect funding applications rather than plans that identify maternal

and child health needs or overall programs within the State. Although a

few States have used the flexibility inherent in Title V to assess needs and

652
to develop a statewide plan for providing services to mothers and children, most have not considered such planning and development activities to be

their responsibility. In response to these problems, substantial interest has materialized in

the development of a single, clearly identified and accountable locus of

responsealky for child health at the State leveL As described by Beverlee Myers (5), this unit would be responsible for the: planning of priorities; collection of data on health status, needs, and services; monitoring and

evaluation of outcomes; coordination of disparate delivery and financing mechanisms and; ensurance that standards of access and quality of care are met. Until such coordination is implemented, planning activities in maternal and child health at the State level are unlikely to be very

effective and any meaningful review of the use of Federal funds is highly

improbable.

ALTERNATIVE APPROACHES TO INTEGRATION

The possibilities for integration of child health in general health planning are myriad. This is evident given the multiple levels of

involvement, the variety of health planning agency roles and responsibilities, and the richness and depth of child health issues and concerns. Specific approaches can however, be grouped into four alternatives a r!

include:

(1) The status quo

(2) The addition of child health planning and representatives of child health interests as a major, formal component of health

systems planning similar to the recent addition of mental health planning in the Health Planning and Resource Development Amendments of 1979

(3) Parallel development of a coordinate maternal and child health planning capacity within the context of maternal and child

health programs with significant interaction with health systems planning at the "intersections" of the two activities (for =ample, data management, issue identification, needs assessment, and Federal funds review) (4) Voluntary involvement of child health interests in health systems planning, along the lines suggested by the American Academy of Pediatrics and including voluntary development of child health plszning tools, including data bases, needs assessments, and

plans devoted to child health concerns Choice among these alternatives is contingent upon one's beliefs about health planning and about the risks and benefits involved in various types of integration. Maintenance of the status quo would, in effect, mean that no focal point for coordination of child health planning would be developed at either the Federal or State level. At the same time, depending upon local initiative, individual Lmilth planning agencies might choose to devote significant portions of both their plan development and plan implementation

capacity to issues directly affecting child health. Current limitations

653

6 5 5
dative to the type of data and methods available would continue, as

would the Federal-State concentration on cost containment as the

measure of agency effectiveness. Whereas the risk of planning agency

interference in maternal and child health activities would be minirrkid,

the opportunities to build a capacity within the planning agency to make a

positive contribution to the area of child health would continue to be

limited. In light of the Federal funding shift away from selected

categorical programs and human services, this failure to build a child

health planning capacity could have significant negative effects over time.

In short, the opportunity to build a constituency for advocacy within the

health systems planning structure will have been foregone.

Some argue that child health interests can only be reflected in health

systems planning if formal representation of child health advocates is

required on health planning agency boards and if the agencies are

required to include a child health component in their plans. This

reasoning follows earlier arguments requiring participation of mental

health, environmental health, aging, and alcohol-drug abuse constituencies in the planning process; most recently, mental health participation

was in fact added to the representation on agency boards. Although

required participation would guarantee that child health interests would

gain a specific spokesperson voicing their concerns, a substantial number

of individuals argue that the planning agency board or council should not

function as a forum for individual interest groups. Rather, a more

workable concept would entail representation embodied in the health

planning legislative that would call for the gathering together of a wide

range of community participants to consider the needs of the community

at large and to debate these needs based on a communitywide and

systemswide perspective. The very arguments noted earlier regarding the importance of a broad

systems perspective to the resolution of child health proble*us apparently

suggest that required participation would not lead to the goals sought by

child health advocates. Alternatively, required representation could assist

in overcoming the most obvious barriers to integration, specifically the

fear that no members of the planning agency boards are sensitive to and

knowledgeable about child health issues and concerns. Perhaps the most practical argument against assigning child health

responsibilities to the health planning agency is the low level of funding

and resources available to health systems planning With every additional

mandate, accompanied by few or no additional funds, the agency is

evermore hardpressed to be effective in its areas of renponsibility. Thus,

requiring integration of child health into tiAe health planning process has

the very real possibility of paper success and actual failure in the

realization of the objectives of either systematic planning or child heeth

advocacy. The parallel development of a coordinated maternal and child health

planning capacity within the context of maternal and child health

programs has the benefit of addressing a central structural deficiency

within the maternal and child health system and, at the same time,

facilitating integration. Furthermore, this parallel development could be

654
supported by the interaction cf health systems planning at the "intersec- tions' of the maternal and child health planning capacity and the

maternal and child health programs.

The single, most significant element in the effective integration of child health into the generic health planning system is a unified plan for maternal and child health at the State leveL At present, however, multiple

separate application and "plans" are required for each of numerous

Federal and State categorical programs. These requirements interferewith

all attempts, at whatever level, to carry out effective, coordinated planning

and, most importantly, result in the absence of a strategic focal point for deliberation on resource allocation related to child health. Efforts at child

health planning integration at both the State and local levels up to this

time have failed largely due to the absence of such a focal point Even in States where attempts have been made to develop such a vehicle, they have remained fragmented and have included only portions of the wide

range of child health services and funding sources. The major argument against the development of such a focal point is

that it could lead to further erosion of maternal and child professional autonomy in resource allocation.. Although this is a legitimate concern, the general erosion of moneys for public health and human services necessitates the prompt strengthening of the strategic planning capacityof

maternal and child health in spite of the risks. This would allow program

planning for child health to be integrated with health systems planning for critical activities such as data and methods development, needs assessment, public awareness and education efforts, plan development, criteria development for various review activities, and resource development In those health systems agencies where real progress has been made in

addressing the issues of child health, that progress has most often been the

result of concerned board and staff members working together to initiate data collection and planning activities and to raise agency consciousness about the concerns of child health. Often these efforts have been spurred by, or assisted by, the voluntary involvement of child health advocates and interest groups. The activities of the American Academy of Pediatrics and its member units have been particularly effective, as have been the

activities of numerous local child health advocate groups. However, without some structural change as described above, the ability to

overcome the existing barriers to truly effective integration through

voluntary involvement, as effective as it can be, is unlikely.

LEVELS AND TYPES OF INTEGRATION

Although a strategic focal point at the State level is apparently the most essential element of integration of child health concerns into the health planning process at either th.: State or local level, a wide variety of additional points do exist that can facilitate fruitful interaction between

the maternal and child health community and the health pi-dinning

community. These are the so-called "intersections" mentioned earlier, as

shown in table 2.

65 7 655
TAKE 2. Armes for Pollmtlial integration of Slate Health Planning Development Agencies and Health Systems Agencies

Public participation

State: SHCC service: joint development of legislative proposals and policy

recommendations; public awareness-education programs; advocacy

HSA: Board-subarea council service; public awareness-education programs;

advocacy

Planning

State: Methods development health status-health resource studies: health

resources inventory; statewide need analysis; development of planning

guidance (incluesng plan format); special target area analyses; issue

identification

HSA: Methods development health status-health resources analyses; health

resources inventory; needs assessment target area analysis; issue

identification

Technical assistance

State: Joint staff training programs; SHCC education

HSA: Board-subarea council education: joint staff training programs

Regulation

State: Development of criteria for Federal funds review development of criteria for statewide appropriateness review; development of criteria for

CON review

HSA: Development of local criteria for Federal funds review; development

of criteria for local appropriateness review activities; development of

criteria for CON review

Data management

State: Development of joint protocols; development of unified statewide data

base-reporting system for maternal and child health

The choice of priority "intersections" will depend to a great degree on

the specific conditions present in the State or local situation. A health

systems agency with a highly developed data management capability

might place its emphasis on the development of quantitative tools to

permit small area targeting of child health resources. On the other hand,

an agency within a State confronting major legislative initiatives in the

area of child health issues may assign its highest priority to legislative

program review or the development of a policy review capacity.

Priorities will also vary at the State level. However, beyond the

development of a coordinated planning capacity at the State program

unit, the developments that States will find most profitable are those

concerning (1) the development of criteria, guidelines and standards, (2)

the improvement of data and methods for target area analysis and, (3) the

development of issue identification techniques and an issue identification

process to ensure that valuable and scarce planning resources are devoted

to the most pressing problems within the child health area of concern.

One of the most effective ways to meld the systems perspective, so

fundamental to both general and child health planning, with the more

focussed approach to resource development, so essential at a period of

656 6
limited resources and planning capacity, is to develop a planning

approach that combines a systematic analysis of health status and

resources with an issue-oriented approach to goal setting and action; this approach is especially relevant to child health concerns and offers perhaps

the best opportunity for effective integration at the State and local level.

REFERENCES

( I) Michigan Child Health Plan.

(2) California State Health Plan. l980-1985.

(3) Blum. H. L "Planning for Health:* New York: MUM Services Press. 1974.

(4) Tompkins. R. F. -Children`s Advocacy and Primary Health Care In Health Politics. Policy and

Law. Paper presented at the C,ongreasional Health Staff Seminar, Washington. D.C.. 1978.

unpublished.

(5) Myers. B. "Child Health: Can the States Do It Better?' Speech to the Congressional Health Staff

Service Seminar. National Health Policy Forum. Washington. D.C.. August 8. 1979.

65 657
FEDERAL ADMINIST ivE

ARRANGEMENTS

FOR MATERNAL AND CHILD

HEALTH

by KARL D. YoaDY. M.F.A.

To-..c purpose of this paper is to present and analyze options for the organization of Federal prortms and activities focused on improving maternal and child health.

SCOpe

'The emphasis is on programs specifically related to maternal and child health, but the most important organizational issues concern those programs that provide or finance health services that include, but are not confined to mothers and children, such as community mental centers and Medicaid. In addition, the implications of organizational alternatives for

those programs which might improve maternal and child health services as a subsidiary objective, such as health phaming, health statistics, and

health promotion znd disease prevention activities are examined. The primary focus is on programs within the Department of Health and Human Services (Lai r% 1":mrever, some attention is also given to the

activities in the Depart Agriculutre and Education. Many other Departments have act?, Si tcting maternal and child health; however, the importance of eit -3ct and school-based health programs for

improved health status as well as access to services demonstrate the

relevance and difficulties of interdepartmental coordination. Because a primary goal of maternal and child health public policy has been the provision of services to low - income populations, programs for

the poor will be emphasized. Whether this focus is appropriate for the

future is not 3U organizational issue but a policy issue, and a change of

focus would reritire a major policy shift. A discussion of Regional Office organization of the DHHS is included, both as separate from and a derivative of headquarters organization and

p:rogramr..-.

659

66
Congressional committee jurisdiction will receive some specific attention an an issue and as a g-actor influer cing Executive Branch fragmentation and policy orientation. The role of the States will b discussed as a context for Federal

organization options. State organization, per se, is not included.

The complexity of this organizational scope reflects the reality of

current maternal and child health activities within the Federal Government As the sections on the organization of Federal programs, past and present, make clear, the current pattern and its historic evaluation is

complex. That complexity reflects the typical result of policymaking in a

pluralistic society and a Gover-iment structure that stimulates and

protects diversity in governmental programs through the constitutional

separation of powers. The panoply of programs affecting maternal and

child health may seem needlessly fragmented, but similar patterns in American Government are not exceptional, as illustrated by water

resources programs, energy activities, and education programs. The

"disjointed incrementalism" of social policy formulation, the power of

interest groups, and the broad range of modern social policy interests are

all important factors in The current patterns of maternal and child health

programs. Any proposed change must cope with these realities, each of

which has deep and honorable roots in the American political tradition.

Organization as a Derivative of Policy

Organization should derive from policy. Attempts to achieve policy

objectives or increase efficiency or effectiveness through organizational

change alone are usually doomed to failure. "When in doubt, reorganize"

is too often an accurate description of the motivation behind organizational changes. Effective organizational arrangements must be built on policy

commitments that have sufficient political backing. Although organizational improvements can correct some obvious

administrative flaws, such as gross duplication or excessive areas of

control, the main tools of improved administrative efficiency are not

found in organizational structure. Both effective and ineffective administration occurs within perfectly rational organizational arrangements.

Because policy objectives rather than improved efficiency should be the

principal driving force behind organization change, this paper presents a

number of options for arrangements and discusses the characteristics of

each option. No final option is recommended because that choice must

derive from the policy conclusions of the Panel.

The Importance of People

People are more important than any organizational structure. Strategies

that build and sustain competent staff and the 'Puns on staff of

organizational changes will be discussed. There much cause for

pessimism in the trend.J of the last 10 years concerning Federal career
staff. Organizational changes without accompanying strategies for

strengthening the career staff are likely to have c:.1.sappointing results.

HISTORY OF ORGANIZATION OF FEDERAL

PROGRAMS DIRECTLY AFFECTING MATERNAL AND CHILD HEALTH

Major events in the organization of those Federal programs intended to

have a direct effect on maternal and child health are described to illustrate

the interaction between the development of national policy and the

changes in organization. Some events were not exclusively or principally

concerned with maternal and child health, but they are included to

provide a necessary context for the programs explicitly focused. More detail is given on recent events, and the current structure of maternal and

child health activities is exolained.

Establishment and Early/ Activities of

the Children's Bureau, 1912-1930

The Children's Bureau was established as a part of the social reform

movement of the "progressive" era in the early 20th century. The early Children's Bureau had an information gathering and advocacy function. Because Federal social programs were minimal, a health and welfare

related organizational base did not exist, and the Children's Bureau was placed in the Labor Department, which was itself a product of this era of social reform.

The scope of the Children's Bureau concerns was much broader than

health, but in its early activities deficits in infant and maternal care were documented. The Bureau played a role in developing the Sheppard- Towner Act of 1921 and was given administrative responsibility r-)i- this new program of grant assistance to the States for devr7 .nent of

educational programs to improve infant care. This program lapsed in 1929, demonstrating the fragile nature of political commitment to maternal and child health in the twenties.

Title V of the Social Security Act of 1935

The most sweeping piece of social legislation ever approved in this country was the Social Security Act of 1935. Included in that Act (under Title V) were grants to the States for maternal and chlid health and

crippled children services. These grant programs were administered by an

expanded Children's Bureau, following the pattern of the Sheppard- Towner Act. The programs thus had a clear organizational identity related

to children, rather than being located with the other Federal health

programs in the Public Health Service (PHS). The Title V health programs

661
were part of a broader strategy to provide assistance to children in need.

particularly low income children. This assistance was consistent with the

intent of the Act to provide sr.:;urity against the worst effects of the

depression. The Title V program grants supported public services primarily through

State and local health departments. This channeling of effort through

State governments was in sharp contrast to the administrative pattern

established by the Social Security Board for the pension programs under

the Act.

An attempt was made by the Public Health Service in 1946 to absorb

the Title V child health programs. This effort was fought by the leadership

of the Children's Bureau who marshalled the support of external and

private sector child advocates to defeat the attempt to shift maternal and

child health programs from the Children's Bureau. The transfer was

finally effected in 1970 in a very different programmatic and organizational context. During the thirties and forties Federal health programs remained

modest. Communicable disease control, biomedical research programs

and some parallel grants to the States for other public health functions

were the most clear-cut Federal health responsibilities in addition to the

Title V programs. In 1946 the Hill-Burton hospital construction grant program represerited a cautious beginning to the Federal role in developing the base for

private sector community health services. The Title V programs therefore were administered from 1935-1965,

without much need for coordination with other Federal health programs.

This ir.iit-4mal Federal role in health, partially the result of determined

oppt)sit:on by organized medicine, meant that the maternal and child

health Title V programs existed in relative isolation. Health insurance,

although discussed, was not included in the origina. Social Security Act.

Exc,Ipt for direct delivery of services to Federal neficiaries, such as

veterans and merchant seamen, the Federal Government was reluctant to

provide medical care to populations in need. The Title V programs,

therefor.% represented a policy commitment to children, albeit modest,

that cc.ntrasted with the restricted social policy for the rest of the

population.

Organizational Arrangements for Maternal

and Child Health Within the Department of Health, Education, and Welfare, 1953-1970

The Department of Health, Education. and Welfare (DHEW) (now

Health and Human Services) was created in 1953 but had a long gestation

beginning in 1939 with the creation of the Federal Security Agency (FSA).

That agency encompassed the Social Security Board, the Public Health

Servi:;e, the Office of Education, and a number of other agencies.

Programs of the Children's Bureau that were clearly akin to those in the

FSA were not transferred to the FSA from the Labor Department until

1946. This transfer split the Children's Bureau and disturbed its leaders

662 6 3
and supporters, partially because the FSA was not a cabinet department. Nevertheless, the maternal and child health program retained its identity

and did not become part of the Public Health Service. the 01 Tice of Education, or any other major agency within the FSA. In the 1960's a number of new programs and organizations were created within DHEW that made the relationships among Title V and other maternal and child health-related programs much more complex. In 1962

the National Institute of Child Health and Human Development (NICHD) was created as part of the National Institutes of Health (NIH). Because NICHD has always been headed by a pediatrician, its inception

represents a new emphasis on research and a new source of professional expertise concerned with mate 7.1a1 and child health. There has never been

any serious proposal to combine NICHD with the Children's Bureau

health programs. New programs for the mentally retarded and Federal support for community-based mental health centers were created in 1963. The most significant event of this period affecting the Federal role in

health and the provision of services to low income mothers and children was the pa ',sage of the Medicaid legislation in 1965. Added to the Medicare bill by the Congress almost as an afterthought, the Medicaid

program provided Federal and State funding for health services for the poor which minimized previous efforts. Building on the provision of payments to providers of services under the welfare program, Medicaid

represented a commitment to pay for health services, with a somewhat naive expectation that those payments would buy the poor into the

"mainstream" of American medical care. This program, despite its many

limitations, meant that more mothers and children would have some of

their medical care paid for by Medicaid than would receive services

through Title V programs. The degree of private provider participation, although still very incomplete, contrasted with the public agency orientation of the maternal and child health program under Title V. In terms of organizatioaal structure, the passage of the Medicare and Medicaid legislation accentuated a splintering 4. f health policy and

administration within DHEW. Title V and Medi:aid were in different

parts of the Social and Rehabilitation Service, the Department's welfare

arm. Medicare was administered by the Social Security Administration, the "respectable" income protection program with broad entitlement for

the whole (aged) population regardless of need. Meanwhile, the Public Health Service programs that were concerned with maternal and child health, either exclusively or as byproducts of services for a wider population, were multiplying. Within the PHS, the

responsibilities were also diffused. NICHD was part of NIH. The Community Mental Health Centers were within the National Institute of Mental Heap (NIMH) which moved from NIH to independent PHS

bureau status in 1967, and then was made part of the Health Services and Mental Health Administration (HSMHA) (a catch-all health service organization in the 'HS) in 1968. HSMHA also contained the Hill-Burton program, communicable and chronic disease control, the Indian Health Service, grant support for community health centers for the poor (begun in 1967), comprehensive health planning, the National Center for Health

663
Statistics (NCHS) and Health Services Research, and other PHS programs

concerned with reform of health services and improving access to care. All

of these programs had some bearing. either direct or indirect, on services

for mothers and children.

The evolving pattern of health responsibilities within DHEW was even

more diffuse than it appears. The Office of Education had some health

interests, and a unit that included a health component was established in

the Office of the Secretary of Education under the Model Cities program.

Many of -the social services components of the welfare program affected

maternal and child health. In the reorganization of the PHS in 1968, the

Assistant Secretary for Health (ASH) was given line authority for the PHS

programs to which was added the Food and Drug Administration (FDA),

and the ASH was also given a role in coordinating health policy across the

entire Department. This coordinating role rema: led a paper funct;on with

little actual effect on programs outside the PHS.

Activities Outside DHEW with Impact

on Maternal and Child Health

The ferment of social policy in the mid-1960's also spawned substantial

health programs outside of DHEW. The Office of Economic Opportunity

(OEO) was deliberately created outside the framework of the established

cabinet departments in the Executive Office of the President to mount a

"War on Poverty" unencumbered by the attitudes, administrative patterns, Congressional relationships, and professional biases associated with

the line departments. Three OEO programs had particular implications for

maternal and child health. Project Head Start contained a health services

component as a part of a larger program intended to overcome the effects

of poverty on child development. The Neighborhood Health Centers

offered comprehensive primary care to poor populations, including

mothers and children. The OEO also started a program to improve

nutrition for mothers and infants. These programs deliberately bypassed

existing program mechanisms at both the Federal and State levels. Head

Start and the Neighborhood Health Centers were transferred to DHEW

when OEO was dismantled by the Nixon Administration in 1972-73.

The Department of Agriculture has mounted programs over the years

that were intended, at least in part, to improve the nutrition of children,

and recently, of pregnant and lactating women. Beginning in the New

Deal with support for lunches and food stamps, both of which continue

today, the recent development of the Special Supplemental Food Program

for Women, Infants, and Children (WIC) has put the food programs

directly in support of improved nutrition for those most likely to suffer

from the effects of low incomes on nutritional intake. These food

programs were derived from agricultural policies concerned with distribution of surplus farm products. These policies remain a political underpinning for the programs. During World War II a proposal to combine the

school :unch program with the Office of Education in the FSA was
rejected because the strong links to agricultural pclicies and the

stabilization of markets.

The WIC program, however, with its basis in improved health through better nutrition and the use of medical determinations of need are much

more directly linked to maternal and child health than other food

programs. Yet, the link to agricultural policy and politics is still reflected

in the administrative location of the food programs within the Department of Agriculture. DHEW, through the National Center for Health Statistics and other programs, has done some monitoring of nutritional status that has some impact on the food programs.

CURRENT ORGANIZATION OF FEDERAL PROGRAMS RELATING TO MATERNAL AND CHILD HEALTH

Charts I through IX show the organizational position of maternal and

child health services within the Department of Health and Human Services and their relationships with each other and with other units within the Department. Charts X and XI described maternal and child

health related elements of the Departments of Education and Agriculture. Many programs have some impact on maternal and child health either as minor components of health programs or as support for broader

programs focused on improved health status generally. The former

includes most of the research institutes at NIH. The latter includes income

security programs such as the Aid for Dependent Children component ..)f

the welfare program. These minor or secondary effects on maternal and

child health by other health programs are so pervasive that they would

include most programs of DHHS except those specifically focued on the

elderly. Programs in other departments such as CHAMPUS, the program

providing medical care for military dependents, the Consumer Product Safety Commission concerned specifically with the safety of toys and many other products, hig,hwa) safety, air and water pollution control, nuclear safety, adequate housing, child labor laws, and criminal justice programs all affect child health in rather specific ways. The Federal

programs addressing these issues are so embedded in other departments

that the benefit of organizational or administrative links with DHHS

programs appears to be doubtful. The food programs of the Department of Agriculture and the Department of Education represent major service

systems that have substantial current impact on child health and a

potential for a more significant role. However, no description of the organizational arrangements for these programs is included. However, charts showing the food programs of the Department of Agriculture and the current structure of the Department of Education are

included because these programs represent major service systems that have substantial current impact on child health and a potential for a more

significant role.

665

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GENERIC RATIONALES FOR ORGANIZATIONAL

ARRANGEMENTS

Public administration theory and the study of American Government

and politics provide some insights into the generic objectives of organizational arrangements. The following are some of the more frequently cited

objectives of organizational restructuring in the Federal Government that may be pertinent to the organization of maternal and child health

activities.

Focus of Responsibility and Accountability

If responsibility for social programs is diffused among several organiza- tional units, it is more difficult to hold an individual administrator

accountable for results. For example, if responsibility is divided between Federal and State Governments, it is more difficult to hold either

accountable. Legislation may specify administrative arrangements that the program administrators can blame for ineffective performance, and

division of responsibilities between regional offices and headquarters can

obscure accountability. Administrative theory argues for clear-cut assign- ment of responsibility, but in reality a considerable amount of diffusion is

the norm where the Federal Government is not directly responsible for the conduct of the activity. This situation is true in all grant programs and Medicaid, or where multiple policy objectives are to be served, as in the

efforts to encourage more Medicaid financing for grant-supported health

programs, such as community health centers. Rather than assigning clear- cut responsibility among competing administrative units, the political decision process typically avoids the issue and permits or even creates

administrative ambiguity. Another issue is where formal responsibility should be assigned in the hierarchy. Ever since the Brownlow report in 1937, public administration

leaders have advocated giving all formal responsibilities to the Depart- ment head. This step ensures that the President and his cabinet officers are

accountable for the conduct of the Department's activities. In some cases the Secretary's responsibilities are so broad, the Secretary of DHHS for example, that some would argue that responsibility should be legislatively

assigned to lower levels with more limited scope_

Coordination of Related Programs

Related programs usually can be more easily coordinated if they are assigned to the same organizational unit. This simple premise is often

difficult to achieve because programs often have several sets of important relationships. For example, the WIC program in Agriculture is justified on the basis of its health impact and should be coordinated with health

services programs at the local level_ WIC is also related to other food

programs in the Agriculture Department and to American agricultural policy. Solving one coordination problem may accentuate another.

677
Creation of mechanisms with specific coordinating responsibilities

outside the line authority may help coordination among scattered

programs but at the cost of diffusing responsibility and accountability.

Function Versus Target Population

Most programs are organized on two major principles. The most

common is organization according to function, e.g., health, income

protection, defense, or energy. The other is organization according to

target population, e.g., children, older Americans, farmers, or labor. In

practice, these alternatives are usually not totally distinct and organization

according to function is common within broader organizations focused on

a target population. For example, for organization purposes "agriculture"

may be considered a function or a population, but the latter is more

pertinent itE a political reality. Functional organization can be focused on objectives relevant to the

entire population. As a result, the constituency of such an organization is

less focused, except for the interest groups involved in providing that

function, e.g., hospitals for the health function or oil companies for the

energy function. Target population organization is usually focused on the wide range of

needs of the target group. Such an organization is, therefore, strongly

identified with its particular population and usually is politically committed to carving out a larger piece of the public pie for that group.

Both of these organizing principles are often present in the same

organizational unit. If so, specific programs usually overlap, and a certain

amount of conflict over priorities is a likely result.

Access to Pori

Advocates of raising a particular organization within the hierarchy

usually cite the need for access to policymakers and the ill effects of

"layering." The presumption is that lower levels in the structure mean a

lower priority for the program.

Reasonable Span of Control

This situation is the _converse of the preceding. If each program obtains

direct access to the policymaker through organizational shift, then the

span of control of the top administrator can become impossibly broad. If

any advantage is to be obtained in moving upward, advocates of a

particular program must presume that other progxams also attempting to

move up will not be as successful. When wide responsibilities are forced

on the administrator by political action, new informal devices to reduce

direct access are usually employed, such as the filtering of proposals and

contacts through a strong support staff.

678
Visible Symbol of Priority and Point of Access for External Constituencies

A readily identified Government unit responsible for particular types of programs may serve as a visible symbol of priority and provide

constituencies with a rallying point. For example, when the Federal Government strengthened its family planning program, the emphasis was

reflected in the creation of a separate organizational unit, and those

individuals and groups supporting family planning had a clearly identified organization to support. The National Institute of Drug Abuse is another example of this organizational strategy.

Social Policy Purpose and Emphasis

A shift in social policy philosophy or emphasis is eften reflected in the

shifting of a program from one organization to another. For example, any program in the Agriculture Department will be more responsive to policy

underlying the maintenance of agricultural markets, and a program in the 0E0 will identify with the needs of the poor as expressed directly by the poor rather than determined by professional experts. Organizations experienced in administering project grants tend to be more comfortable with innovation, whereas entitlement programs, such as income protection

programs (welfare, social insurance, food stamps, etc.) concentrate heavily on equity rather than innovation.

Alignment with Congressional Committee Structures

The clear alignment of programs with specific Congressional committees has often led to the development of Congressional "patrons" for certain programs, and program advocates will oppose shifts in programs

that might sever relationships. For example, Title V program ..dvocates had the support of Congressman Wilbur Mills when he was the Chairman of the House Ways and Means Committee. Title V was the only health

services grant program over which that committee had jurisdiction. Organizational or program changes that threatened that relationship were

seen as detrimental to the support of the program.

Shaking Up the Bureaucracy

Usually couched in more elegant or discreet terms, a frequent justification for reorganization is the need to reduce the power of entrenched bureaucracies. Indeed, some influential people, including John Gardner of Common Cause, have advocated periodic organizational change as a necessary means toward organization self- renewal Many

techniques are available but the most common is "box shuffling" leading

679
to either centralization or decentralization of responsibility. Often an

organizational change is justified in terms of other objectives combined

with centralization or decentralization. Sometimes organizational decisions regarding locations of n.tw programs are made to avoid placing them

in a particular bureaucracy, as was the case with many of "New Deal" and

0E0 programs. Of course, such a strategy results in the creation of a new

bureaucracy that will usually acquire. with the passage of time, the

characteristics of an established bureaucracy.

Symbol of Rapid and Decisive Action

Even when there are few reasons for organizational change, a political

leader may reorganize to give the impression of rapid and decisive action.

Because the term of service for senior political appointees is often short

(averaging just over 2 years in the Federal Government during the past 30

years), administrative reorganization is one action that can be taken in this

time span. Needless to say, program objectives are cited as justification for

such reorganizations.

ORGANIZATIONAL ISSUES IN MATERNAL

AND CHILD HEALTH PROGRAMS

Following are some of the specific issues and their implications for

Federal administration of maternal and child health programs. Because

structure should derive from policy, it is necessary to clarify organizational issues in relationship to policy trends. Discussion of those policy

options, per se, is beyond the scope of this paper.

Coordination of Medicaid and MedicaidRelated Programs with Programs of

the Public Health Service

The Medicaid program was begun and continues as an offshoot of the

welfare program. It was not conceived primarily as a health program but

as an income maintenance program to help the eligible poor to pay for the

high costs of medical care. This reasoning was reflected in the location of

Medicaid until 1977 in the welfare administration unit of DHEW.

Medicaid shares with welfare the responsibility for establishing and

terminating eligibility, for rooting out fraud and abuse, and for administration through a set of reluctant partners, the States, many of which seek

to minimize the number of eligibles and the scope of the program. The

mechanisms of reimbursement have received much attention, and the

effects of rapid rises in health care costs have focused attention on cost

containment rather than hea!th needs.

Two important developments have taken place recently. The first was

the development of the Early Periodic Screening Diagnosis and Treatment

(EPSDT) program, which attempted to use the Medicaid program in a

680

6
more aggressive fashion to identify children in need of health services and to meet those needs. That this program has had a difficult history should

not be surprising given the basic characteristics of the Medicaid program. The CHAP proposal would carry Medicaid much further toward

becoming a program for improving the health ofits beneficiaries and not just an income scheme for paying expenses already incurred. The second event was the transfer of Medicaid into a new agency in

early 1977, the Health Care Financing Administration (HCFA). HCFA is attempting to provide a common administrative and policy framework for Medicaid and Medicare, a difficult task given the very different character- istics of the two programs. This intent is illustrated in the HCFA

organization, which does not have u separate organization unit for Medicaid. It is reasonable to speculate that HCFA probably would

administer any likely expansion of the Federal health financing role. The current Administrator describes HCFA as a health program, yet its major components have an income protection orientation and administer

payment processes based on the current nature of the health care system. These programs, by emphasizing payment for services already obtained

and by following many of the patterns of private health insurance, have reinforced the characteristics of the existing health system with its emphasis hospitalization, specialized services, and episodic care and

disincentives for primary care, preventive services, and continuity of care. The addition of the (PSRO) and other "quality assessment" programs to review the appropriateness of and necessity for care cannot overcome

many of the basic incentive patterns created by the systems of reimburse- ment

EPSDT and CHAP seek to change those patterns ;or some aspects of child health services.. However, many other programs, mostly in the Public Health Service, have been attempting to expand the capacity for primary

care of poor populations in underserved areas. Other PHS programs have created and supported innovative patterns of care including health maintenance organizations (HMOs), midlevel practitioners, prevention and health promotion programs. Still other PHS programs support systems of information gathering and data generation, health planning, and resource development Since the =cation of Medicaid, there has b-ra difficulty in the

coordination of its policy and operations with those of PHS. Examples of

effective coordination can be cited in specific cases, but much evidence

indicates separate paths and philosophies as well as the usual degree of

territoriality. The actual and potential relationships among the program elements of HCFA and PHS justify the need for a much closer relationship. Close

cooperation will be required because of the prospect of CHAP and further developments in health financing programs that require inputs from

health services oriented staff (e.g., the end-stage renal disease program), the growing need to improve and monitor the effectiveness of health

services (through research, service innovations, assessments of efficacy, health planning and health statistics), and the need to build kocal capacities for services (especially primary care for the poor and rural areas). The case for a closer relationship is especially strong in the area of

681
maternal and child health. because of (1) EPSDT and CHAP; (2) the

strong emphasis in PHS on primary care including disease prevention and

health promotion, which are especially large components of maternal and

child health services; (3) the need to work with other programs and public

delivery systems, such as schools and public health departments which do

not have the fee-for-service reimbursement orientation of HCFA; and (4)

the need to couple the professional knowledge, innovative capacities, and

the commitment to improved health of the PHS with the leverage of the

large dollar flow through Medicaid.

This closer linkage might be achieved by assigning EPSDT1CH AP to

the PHS, by transferring all of the community health oriented activities of

the PHS to HCFA, or by much stronger policy coordination that defines

HCFA's role as the administration of the eligibility and payment

mechanisms, and assigns policy determination lark ely to the office of the

Assistant Secretary for Health. Whether or not an organizational shift is

recommended, the magnitude of the coordination issue deserves specific

attention by the Panel.

Separation of Research and Service Programs

Presently. the major research activities for maternal and child health are

located within NIH, primarily in NICHD, while the maternal and child

health-related service programs are predominantly in the Health Services

Administration (HSA) of the PHS. The Alcohol, Drug Abuse, and Mental

Health Administration (ADAMHA) is an example of the combination of

service and research functions within the same agency. The mental health

lobbies have worked hard to achieve and maintain this combination.

However, there does not seem to be any pressure for an analogous move

for maternal and child health, even though a case might be made for

better linkage between service needs and research activities through such a

merger.

Relationship of Maternal and Child Health

Pkograms to Other Primary Care Programs

HSA administers various programs providing primary care (as well as

other services) to underserved populations, mostly poor or rural. These

programs include Title V (with its specific focus on maternal and child

health and crippled children services), community health centers, migrant

health. the National Health Service Corps, family planning,, rural health

programs, the Indian Health Service, and others.

When Title V was first transferred to the PHS in 070, it retained its

own organizational identity. However, the reorganization of 1973 that

created the HSA changed the administrative structure of Title V to

stimulate the integration of the Title V programs with the other

comprehensive, family-oriented care programs of the HSA. The Office of

Maternal and Child Health within HSA provides professional staff

services, policy guidance, and technical assistance to all HSA family682
oriented programs in addition to Title V. The intent is to use the full array of programs to improve family-oriented, comprehensive primary care for the underserved. The advocates of this approach contend that more care will be provided to more mothers and children through this coordinated

approach and that the family orientation is advantageous in providing this clue.

Those who argue for a separate maternal and child health program follow the child advocacy tradition of the Children's Bureau. They contend that a separate organizational identity is needed to ensure a priority concern for mothers and children, and that the reality of competition for limited resources means that the needs of children will be submerged unless a special emphasis and organizational identity are maintained. The Panel needs to decide if the advantages of close relationship with the family-centered programs of HSA outweigh the

special emphasis on maternal and child health that would probably be

stimulated by a separate organization. If Title V is modified to emphasize planning, monitoring, technical assistance, resource development, and coordination for maternal and child health services. as some have advocated, then a separate identity built around the current program of grants for services would probably not be sensible. The current structure is in line with the reality that many children receive their care in family- oriented settings.

Relationship to Welfare and Social Service Programs

Poor families often have multiple problems, many of which are related to health status of poor children. Because these programs are interwoven with the low incomes, income assistance programs have an impact on improvement and maintenance of health, and social services may ameliorate the effects of poverty. The impact of social and economic factors has more significant variables for many child health problems than the availability of health services (especially those health problems cited by Haggerty as the "new morbidity"). Health services offered to these children and their families without attention to social and economic factors may have only temporary effects. For these reasons, the income protection programs of DHHS, particu- larly the Aid to Families with Dependent Children (AFDC) and disability programs administered by the Social Security Administration, can be viewed as necessary underpinnings of the health-related programs although not specifically defined as health programs. The social services programs administered by the Office of Human Services have an even more direct effect on health. Some of these programs, particularly Head Start, have specific health components, and programs, such as day care. offer a potential as mechanisms for health services delivery. Until 1970 the Children's Bureau combined health and welfare services with a research and advocacy function concerned with the needs of children. The breakup of the Bureau amplified the need to make an

683
explicit effort to coordinate policies and programs that are located in

health, social services, and income protection organizations. The recombining these child-related functions would probably ease the ccordin. ating task at the cost of breaking useful linkages with relevant professional

expertise and loss of leverage of many programs that support maternal

and child health directly or indirectly. If the current organizational

divisions persist, then it would be important for the health services t.)

recognize the contributions income assistance and social service programs

make to the health ofchildren, to identify health needs that might be met

by the other programs, and to cul t. their support. Conversely, the policies

and programs concerned with income and social services should attempt

to facilitate access to health services and changes in the child's environment that have demonstrable impact on child health. The coordination of

analytical, policy, and program operation activities probably needs

explicit encouragement from the Office of the Secretary because all of the

major units of DHHS are involved.

Enlisting Resources of Other Health

Programs Within DHHS for Maternal

and Child Health

Because many health programs within DHHS other than those

specifically identified with maternal and child health have an actual or

potential impact on maternal and child health improvement, a significant

issue in assessing organizational and administrative options is the extent

to which these non-maternal and child health programs can be directed or

influenced to increase their attention to health problems of children.

Many of these programs are very significant for maternal and child

health: Research on child health problems is supported by Institutes other

than NICHD, for example, research on dental caries, childhood

leukemia, and childhood infectious disease.

Many activities of the Alcohol, Drug Abuse and Mental Health

Administration concern children, adolescents, or the effects of

adult problems on children. Immunization programs, health education programs, and other

prevention activities at the Center for Disease Control are heavily

oriented toward children.

The health planning program administered by the Health Resources Administration is a potential vehicle for strengthening the

priorities and planning .`or maternal and child health at the State

and local levels.

Efforts of the Health Resources Administration to increase the

number of primary care physicians, nurse practitioners, and

physician assistants will probably increase access to maternal and

child health services.

The National Center for Health Statistics, Health Services
Research, and Health. Care Technology are sources of data and

research relating to maternal and child health needs that could

(and to some extent do) serve some of the functions performed

historically by the Children's Bureau. The end stage renal diseases program in the Health Care Financing Administration services the needs of children that might otherwise be met (less completely perhaps) through the Crippled Children's Program under Title V. Many more specific examples could be cited. The important point is

that none of these programs is going to be placed in any new or

rearranged structure specifically focused on maternal and child health or children, because they are embedded in larger programs with different objectives or functions. These programs can make important, often

frreplaceable, contrilutions if greater emphasis and better coordination

are the means of utilizing them to improve maternal and child health. If a policy commitment is made to increase the emphasis within programs not -related to maternal and child health to meet the needs of

children, then various leverage techniques must be employed by an agent outsiciz of the programs. This approach is not meant to imply that materna! and child health needs will not receive spontaneous attention

from many of these. programs, but in the competition for scarce resources water/sal and child health needs may be slighted, especially given the demographic trends during the next 50 years. The leverage techniques are many, including: Legislative mandate (e.g., requiring specific attention to maternal and child health needs through earmarked appropriations or

legislative report language) Monitoring of the actual or potential effects of the program on maternal and child health by an outside maternal and child health unit, possibly within the current Planning and Evaluation structure

Budget review concerned with maternal and child health impact using the monitoring system

Persistent and opportunistic exploitation of these prog-ams by maternal and child health activities at the State and local level,

perhaps facilitated by effective Regional Office staff Forma/ interagency agreements with maternal and child health

agencies Advocates outside the Federal Government applying 7essure to

decisionmakers (emphasis on particular diseases in thf; NIH is a good example of the effectiveness of this pressure) The creation or expansion of special units within the program

specifically concerned with maternal and child health program- ming

Isolating maternal and child health concerns and locating them

elsewhere is the opposite of leverage. This familiar pc th leads to later charges of overlap and duplication. If leverage is to be obtained, special, continuous and patient effort and understanding and tolerance for the many other objectives of nonrelated programs will be required.

685
Relationship to Relevant Programs Outside of DHHS

Coordination across depak-tment lines is one of the most difficult tasks

in Federal administration, especially when different Congressional juris- dictions are involved. When the focus of the programs in other

departments is children-specific and health-related, such as the WIC

program in the Department of Agriculture, then the maternal and child health programs in DHHS can be perceived as natural allies and

advocates, p.-oviding a basis for constructive cooperation. If the other

department, however, perceives imperialistic ambitions, including the

takeover of its program, then strong resistance and noncooperation can be

expected. If policy conflict exists, confrontation is not Nicely to have much

effect, because little real power can be exerted on the other department

Well-reasomd policy positions may have their effect through decisions by

higher levels of the Government, such as the Office ofManagement and

Budget (OMB), the Domestic Policy Staff, or the Office of Science and

Technology Policy. Common interests may lead to interdepartmental cooperation on a

spontaneous basis, especially when one department wishes to draw on the

technical expertise of the other. When competing expertise exists (and this

is a frequent tendency), rivalry can inhibit coordination. For example, if

the Department of Education decided to rely on the PHS for technical

expertise in developing strengthened school health programs, a cooperative quid pro quo could be established. However, if the Department of

Education decided to build its own health expertise, coordination with

other health programs might languish for want ofcooperation. If maternal and child health interests in DHHS wanted increased

emphasis on school-based health services under the Elementary and Secondary Educational Assistance Program of the DOE, this would be

very difficult to achieve unless the DHHS offered funds, expertise, and/or

advocacy that expanded Department of Education resources. Otherwise,

DHHS would be trying to influence the reallocation of scarce resources

within the DOE, a difficult task at External advocacy groups, or institutionalized groups of external

advisors, such as national advisory councils, can help establish the climate

and pressure for cooperation. Here again it helps if additional resources

can be offered to erode bureaucratic resistance.

Layering and Access to Policy Leaders

Layering is the imposition of organiz' ation layers between a particular

program and leadership at the policy level. Layering is in the eyes of the

beholder, because in a large department some programs have to be under

other organizational layers to prevent the span of control from becoming

impossibly large. It is cited as a problem when the advocate of the

particular program believes that inadequate attention and priority is giver-,

to that program by higher levels of decisionmakers because the needs of

the program are submerged beneath other priorities and the description. of

686
these. needs is filtered through afirniTlistrative leaders who are committed

to other priorities. The Tide V program is seen by some as layered within the Bureau of Commtmity.Health. Services. This organizational location interposes three

.of decisiomnaking between the Title V program and the Secretary

of-Dmits. Criticism of this organizational placement presumes that higher prioritywoukl be assigned to the program if it were to be moved up in the hierarchy thus gainin,g direct access to the Secretary. This argument is simplistic in that many programs have received strong

support even though located down several layers in the hierarchy. The National Cancer Institute (before the 1971 Act), the Army Corps of

Engineers, and the National Health Service Corps are three very different examples of pro=s that maintain strong external support and sustain

rapid expansion even though there are many layers, not always supportive, between the program and a cabinet officer. Layering can offer some protection for programs if the higher layers are reasonably supportive. Leadership instability may be associated with high levels within the Department especially if the leadership post is important to those

attempting to change the political perspective ofa Department. Inadequate influence of layered programs on other programs is another problem. This concern. can be vatic` if the program is never included in policy discussions of related programs because of its organizational

location even though capable leaders have usually been able to express

their views at higher levels and to influence other programs. The potential advantages of higher organizational location can be undermined by

inadequate leadership.

High level policy commitment, however obtained, is the most important factor in obtaining funding, influencing program administration, or

influencing related programs. A higher organizational location may be the

result and symbol of that commitment. However, higher organizational location as a means of bringing about that commitment by high level policymakers not always successful. Just as there are examples of strong programs at lower levels, there are also examples of weak programs and weak coordinating position at high levels in the Department.

Decentrahz' ation and the Role of

the Regional Offices Within DHIIS

The most crucial issue concerning decentralization of maternal and

child health is the role of the States in such programs at the community

level, but a full discussion of this issue is beyond the scope of this paper. The role of the States in many maternal and child health programs, such

as Title V formula grant programs, WIC, and EPSDT has been and is

significant Other programs such as Community Health Centers and the original Maternity and Infant Care Centers have bypassed the States to a

significant extent. The Panel must decide on the emphasis and roles to be given programs funneled through the States relative to those with direct

Federal project grants. This issue is dealt with in various ways in other

background papers.

687
The choice of policy direction has considerable significance for the

organization of Federal staff. If the States are to play a primary role in

programming flexible Federal funds, then the Federal staff would be small

and would provide expert technical assistance to the States as needed,

ensure compliance with Federal law and regulations, provide assistance to

the States in drawing on and coordinating with other Federal programs,

and perhaps monitor programs for measures of maternal and child health

status and access to services. This approach would mean decentralization

in the extreme and implies a relatively passive Federal role. Federal staff

would be advocates for and provide assistance to what is predominantly a

State function.

If a more active Federal role is desired, but with responsibility for the

actual conduct of the programs residing with the States, then the Federal

staff must be strengthened to play a more aggressive monitoring and

enforcing role. If the States are to be held to certain performance

standards, and if penalties and other pressures are to be applied when

performance is inadequate, the Federal staff must devote much effort to

documenting performance (establishment and maintenance of data and

reporting systems), to encouraging or forcing corrective actions by the

States (often through the time-consuming mechanism of threatening to

bring Federal punitive actions), and to coping with the likely political

controversy that such a course of action entails.

The first alternative implies that the States are the primary actors, with

Federal assistance and help, whereas the second implies that the States are

acting as agents of Federal policy. In these brief descriptions, the

alternatives are caricatured to make the contrast Some role-mixing of the

Federal staff can occur, but the relationship must be quite distinct. The

first assumes considerable tolerance for diversity among the States in

objectives and performance, but the second assumes that greater national

uniformity is desired. A good example of the first is the traditional Federal

stance toward the content of education programs. The Federal stand on

busing is a good example of the second. If a system of direct Federal project grants (or Federal placement of

personnel, as with the National Health Service Corps) is chosen as a third

alternative, then the Federal staff becomes both programmer and judge.

The success of such programs often depends on the initiative of Federal

staff in identifying and assisting community leadership around which the

local projects are built. When local initiative arises spontaneously, or in

response to Federal stimulation, then the staff can help clear away

problems, provide access to resources, provide technical assistance, and

provide advice on the intricacies of Federal procedures. Federal staff must

also sit in judgment on community programs regarding allocations of

scarce funding, maintenan; of satisfactory performance, and, as a last

resort, termination of Federal funds. The relationship between community

programs and the Federal staff is direct and the State has a small role.

Indeed, part of the motivation for some Federal project grant programs

for disadvantaged populations is the bypassing of existing public agencies

that traditionally provided inadequate services to those populations.

The Federal staff is in a very difficult position in the direct grant role.

They must be friend, expert, reformer, and judge. They are often in an

688
adversary position vis-a-vis States, as a deliberate policy, because the project grant program often assumes State inadequacies and with the

resultant refusal to delegate Federal responsibilities to the States. This discussion of alternative approaches to the decentralization of

responsibility to the States provides a backdrop for discussion of the role of the Federal Regional Offices. Criticisms of the performance of Federal Regional Office staffs in relationship to maternal and child health programs often are not clear regarding the appropriate role. As stated, that role is very dependent on the Federal policy about the degree and

nature of decentralization. If the responsibility for programs is strongly decentralized the appropriate role of Regional Office staff may be to provide or arrange for technical assistance on request, either regarding

program substance or the intricacies of other Federal programs that the State may wish to investigate. The States may see the Federal regional staff as advocates to Washington. Regional staff in earlier years of close PHS-State Health Department collaboration were often perceived by

headquarters as State oriented. Several questions about the role for the Regional Office need to be addressed. Cannot the States be their own advocates? Can a Federal

intermediary far from the Washington scene be useful? Do many States not have technical expertise within their boundaries at least equal to that which the typical Regional Office can muster? Would not consortia of

States (on the Regional Commission or Western Interstate Commission on

Higher Education (WICHE model)) be just as effective in marshalling

expertise within their boundaries at least equal to that which the typical Regional Office can muster? If occasional Federal help is needed, can it

not be provided by Washington headquarters staffs? In the business world decentralization is symbolized by the executive jet. In other words, ifthe

policy calls for strong decentralization to the States, is not the Regional Office an anomaly, except perhaps in an interdepartmental coordinating

role?

If the Federal Government is attempting to play an active role in

moving the States toward the fulfillment of Federal policy objectives, then

a strong Regional Office staff is probably required to provide both carrots and sticks to ensure State performance. The widely discussed failure of EPSDT is an example of a well-intentioned Federal initiative that foundered on the lack of a Federal strategy and capacity to ensure State

compliance. The Regional Office role calls for strong knowledge of the

substance of programs, skill in the technicalities of Federal leverage mechanisms, and intergovernmental diplomacy. Recruiting, motivating, and retaining such extraordinary persons in Regional Offices is a great challenge that is not cften achieved. A Federal strategy bypassing the States with direct project grant programs requires a somewhat different set of skills: substantive expertise, community organizplon skills. and some of the skills of a management consultant The best of the 0E0 health staff and some of the young PHS

staff implementing Community Health Centers in the late 1960's had these

skills.

No matter how their functions are perceived, Regional Office staff play

a coordinating and facilitating role among the various Federal programs

689
relevant to maternal and child health. In doing so they are often forced tc,

cope with program inconsistencies, and inflexibility, poorly conceived

objectives, and changing directives from headquarters. They are criticized

from both sides, as they are called upon to correct the imperfections and

ambiguities of Federal programs. Their role and rewards are clearest when

they represent a single program. The negative tone of these comments only means that the necessary

conditions for a fully effective Regional Office function have not yet been

defined or implemented. The multiplicity of Federal maternal and child

health programs and the various modes of Federal action, all being

implemented simultaneously, call for virtuoso performances by Regional

Office staff:. Such performance will only occur consistently after development of a long-term strategy for strengthening the staff:

Congressional Committee Structure

Congressional jurisdiction over programs affecting maternal and child

health is split among many committees and subcommittees. According to

a list compiled by the Congressional Research Service of all subcommittees with jurisdiction over health issues there are 26 subcommittees in the

House and 23 ir. -le Senate that have jurisdiction over matters that affect

maternal and child health directly or indirectly. However, the major

jurisdictions affecting maternal and child health are in three pairs of

committees: Appropriations, House and Senate

Senate Labor and Human Resources and House Interstate and

Foreign Commerce Senate Fmance and House Ways and Means

The committees cover most of the DHHS programs for maternal and

child health, although major programs, such as WIC and Indian Health,

are handled by other committees. Within these committees, many

subcommittees further subdivide the jurisdiction over maternal and child

health programs. A complete discussion of the implications of this fragmentation of

jurisdiction and its roots in the structure and history of the Congress is

beyond the scope of this paper, but several of the most significant effects

of this fragmentation deserve mention.

Coordination of Federal programs is made difficult because specific

policies for each program are shaped by the particular views of the

relevant Congressional committees and those views on similar issues may

differ quite sharply. These differences and their impact on programs is

intensified by the power exercised by strong committee chairmen or staff

who often remain in positions of authority far longer than their

counterparts in the Executive Branch. The policy differences between the

Medicaid program and the project grant program for community health

services are examples of the effects of split jurisdictions, especially in the

Senate.

Another effect of this fragmentation is difficulty in introducing broad,

multifaceted strategies for improving maternal and child health. Because

691
such strai...sies cut across jurisdictional lines, it becomes a herculean task

for many private organizations (except for the very well-funded provider lobbies), to put together the multicommittee coalition necessary for coordinated action_ A good example of this effect was the difficulty in

developing a broad energy policy. Entrenched interest groups are almost sure to use a divide-and-conquer approach to defeat a broad strategy, and

a weak link in the chain can usually be found_ Conversely, divided jurisdictions lend themselves to effective action by

a sharply focused single issue constituency_ However worthy the cause, the

success of such a constituency in capturing the attention of a few powerful Congressional leaders can lead to further fragmentation of jurisdiction as

a new subcommittee or special committees are formed around specific

issues_

Finally, multiple committee jurisdictions erode the time and energy of already overburdened leaders of Executive Branch agencies. Agency heads and their staffs typically spend extraordinary amounts of time

dealing with Congressional committees, and multiple jurisdictions com- pound this problem. Much of this activity is a necessary part of accountability under our democratic system, but the separation ofpowers under the U.S. Constitutional system does place unusual, and at times

destructive, burdens on Federal executives, in contrast with the parlia- mentary system of Britain or Canada. This set of problems is true of many areas of public policy, not just

those related to maternal and child health. Given the nature of Congress, good solutions are difficult to identify that do not either raise other significant problems or fly in the face of the realities of political power.

ORGANIZATIONAL OPTIONS

Various organizational options are outlined and discussed, and empha- sis is given to those more likely to receive serious consideration if

advocated by the Panel_ The options are deliberately described in rather general terms, both because the number of detailed variations nears

infinity and because it is more appropriate for external advisors, such as

the Panel, to advocate the broad outlines of desired changes, leaving the details to be worked out by responsible administrative officials. However, some specific details are mentioned when they illustrate a necessary point. Some variations within an option are specified when different approaches

to the same organizational objective deserve special attention. The intent is to provoke thought and to illustrate some of the trade-offs, not to provide an organizational answer for the Panel. It is hoped that in

choosing among these options, or recommending different combinations or variations, the Panel will understand better the significance and likely

impact of their recommendations. A brief discussion of options for Congressional organization is included, but a full treatment of the Congressional situation is beyond the scope of

this paper_ These options are described: (1) The status quo

609 691
(2) A coordinating mechanism with variations

An Office of Maternal and Child Health in the Office of the

Secretary of DHHS Deputy Assistant Secretary for Maternal and Child Health in

the Public Health Service

A National Advisory Council for Maternal and Child Health

(3) A new Maternal and Child Health Organization within the

Public Health Service consolidating existing programs (and

including any new programs recommended by the Panel) with

variations:

Maternal and Child Health Administration reporting to the

Assistant Secretary of Health Bureau of Maternal and Child Health within the Health

Services Administration

Consolidating PHS programs only Transferring EPSDT (or CHAP) from the Health Care

Financing Administration

(4) A new children's agency within DHHS (a reconstituted Children's Bureau) (5) Merger of Public Health Service and Health Care Financing

Administration

(6) Congressional jurisdiction options Consolidating maternal and child health jurisdictions within

an existing committee in each House

Establishing subcommittees on maternal and child health

within existing committees Joint jurisdiction A new Select Committee on maternal and child health with or

without legislative jurisdiction A new joint committee

Option 1Status Quo

This option is important for several reasons. The frequency of

reorganizations recently (four major reorganizations of the PHS since

1962, plus the transfer of Title V in 1970 to PHS, and the creation of

HCFA in 1977), the still fresh assimilation of new programs and the

possibility of major new policy initiatives, such as national health

insurance, have created an atmosphere of instability. As stated previously,

shaking up an entrenched bureaucracy may be a valid justification for

reorganization, but the PHS has hardly had the opportunity to grow too

comfortable in a long-established organizational mold.

Every time a change takes place, a price is paid in turmoil. Able people

are usually lost through resignation or retirement because of uncertainty,

frustration, or perceptions of hostility almost inherent in major organizational shifts. Change is particularly destructive if it is perceived as the

whim of a particular administrator, without clear policy objectives, and

without a firm political commitment. Because the senior officials initiating

such changes are usually political appointees whose tenure is usually from

692 3
2 to 3 years, it is easy for career staff to adopt a cynical attitude about organizational changes. Rapid change breeds defensive behavior. The amount of energy invested in any major organizational shift might be invested instead in staff development (a long-range activity requiring

some organizational stability), policy refinement, and administrative

streamlinin,g and improvement. This option is particularly attractive if major policy initiatives and increments of funds are unlikely.

However, if major policy and program changes are in prospect, then the organization,ki status quo has the disadvantage of leaving in place the organizational manifestation of earlier policy commitments. This option also fails to provide explicit means for improved program

coordination. It depends on the inclinations of the line leadership. The current status quo can be characterized as providing little specific organizational identity for maternal and child health programs, yet at present the PHS leadership is concerned about these health problems because pediatricians occupy many key positions. This orientation may

shift with the Presidential election or with the typical turnover rate in

senior positions Nevertheless, an option to preserve the status quo should be the

reference standard against which all others are judged_ The benefits ofany proposed change must exceed the considerable benefits of a period of organizational calm which provides opportunities for program leaders to

improve current arrangements and policies.

Option 2Coordinating Mechanism

Programs with direct and indirect relevance to maternal and child

health are scattered in many locations within the PHS, HCFA, other parts of DHHS, as well as the Departments of Agriculture, Education, and even Defense. This fragmentation has its source in the diverse roots of social policy and is sustained through interest group pressures, bureaucratic defense of territory, and divided Congressional jurisdictions. Rather than

confronting these forces head on by proposing major organizational consolidations with maternal and child health as the overriding priority, a coordinating mechanism could seek synergy among programs and

redth---sion of policy and administrative conflicts. The coordinating approach has many potential virtues: It provides a clear focal point for analysis, monitoring and

advocacy of maternal and child health interests across a wide

range of programs, including those general health programs with

secondary impact on maternal and child health_

It gives external constituencies and Congressional interests an

easily identifiable point of contact and serves as an information dissemination point about Federal maternal and child health

activities.

It is less disruptive than major reorganization. It is less subject to the policy and administrative biases of particular line agencies that value objectivea, other than maternal and child health.

693

694
By avoiding the burdens of day-to-day management of program, it

retains flexibility in relationship to the multiple and complex

processes of decisionmaking within the Executive and Legislative

Branches. Among the liabilities:

Among the liabilities: It can lead to rivalry with line managers and (often) the absence of

decisionmaking power, depending on responsibilities assigned to

the coordinator.

The coordination function is usually more effective in coordinating major policy than in coordinating program administration.

It often lacks long-term continuity, therefore can be defeated by

bureaacaatic delay tactics. The coordinating function tends to slip into administrative

meddling and trouble-shcoting. Multiplication of coordinating mechanisms for many different

interests can lead to a n!w layer of administrative confusion

(special assistants stumbling over each other attempting to attract

the attention of the line decisionmaker). Coordination mechanisms have a potential for diffusing responsibility and accountability. The staff can become captive to information supplied by line

managers. In designing such a coordinating mechanism, important decisions must

be made about location, structure, and responsibilities. Higher organizational location gives wider scope across programs and/or departments,

but is less institutionalized and more subject to political shifts. For

example, the coordinating mechanism could be in the White House

Domestic Policy staff, at the Secretary (DHHS) level, or in the PHS. The

higher levels are likely to be less tolerant of a special-focus coordinator

because of the breadth of their concerns, but precedent exists in the drug

abuse policy focus at the White House. Because the majority of maternal and child health activities are within

DHHS, a White House location does not seem likely, but there are two

principal alternatives within DHHS. The first is the establishment of an

Office of Maternal and Child Health within the Office of the Secretary.

This location is pertinent to the coordination of programs in PHS, HCFA,

and Administration of Children, Youth and Families_ In this location the

Office could invoke the Secretary's authority to overcome resistance to

coordination by the line agencies and could be the support staff for the

National Advisory Council on Maternal and Child Health.

The other alternative is to locate the coordinating mechanism within the

Office of the Assistant Secretary for Health. Several external groups

interested in maternal and child health have advocated a Deputy Assistant Secretary for Maternal and Child Health to carry out this function, but

the function could also be labeled as an Office of Maternal and Child

Health. This location would probably provide a greater degree of

institutionalization and continuity, and a more professional tone than a

location in the Office of the Secretary. Coordination of programs outside

the PHS would probably be more difficult. This location would be more

strongly justified if EPSDT/CHAP were moved to the PHS, or PHS and

694 5
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coordinator's actions. Line acirriiiiktrators usually resist such assignments

as undesirable diffusions ofresponsibility. Another coordinating device that has been used in other areas is the

establishment of a National Council for Maternal and Child Health. The

Council might have full-time members and function like the Council of

Economic Advisors, but a more plausible arrangement would be an

advisory council composed of nonfederal experts and leading citizens with

an interest in maternal and child health serving as part-time consultants as

with the national advisory councils at NIH. The chairman could be either

a nonfederal person appointed by the Secretary (or the President) or the

full-time head of the coordinating office. Examples of both approaches

can be found in other advisory councils. Public Administration purists

oppose a nonfederal chairman, but a prestigious person in that role might give additional visibility to the Council and an appearance, and perhaps a degree, of greater independence. The President's Science Advisory Committee during 1958-1970 was chaired by the President's Science Advisor and had a distinguished membership and important impact during its earlier years. Defenders of line responsibility within the agencies and the Office of Management and Budget are likely to oppose a strong advisory council. However, such a mechanism could provide visibility to analyses and

recommendations concerning important maternal and child health issues. The character of the Council as analyst or advocate would depend on the

individuals in the Council. Analysis and advocacy are not necessarily in

conflict, and the most effective advocacy, especially within the Executive Branch, is based on sound analysis. Such a group might be discounted in

the decision process for having a predictable "point of view" rather than

providing creative solutions or options for difficult problems. If the Council is to be effective, it needs not only strong staff support but also some specific responsibilities. The special report described above

might be issued by the Council. It might be asked to review and comment on budgets, legislation, and major policy proposals. The Council com- ments, generated independently, could be given to the Secretary or other

line official. Statutory budget review, as with the cancer advisory

apparatus, might be considered, but this approach will be strongly

opposed by OMB and line managers. Useful functions of the Council

could be to focus attention on new policy and programs and to provide

some oversight for the implementation of the new directions.

All of these devices that strengthen the Council will create some tension with line managers. Tension is an inevitable result of a Council that has effect on the coordination and priorities of those programs that have maternal and child health as a secondary interest as well as programs directly concerned with maternal and child health. The Council could be associated with the coordinating office whether

located in the Secretary's office or that of the Assistant Secretary for

Health.

Two final comments can be made on coordinating mechanism. First, the effectiveness of coordinating devices tends to diminish as they become

routine. Special effort must be made for periodic renewal of commitment.

696
Congressional bearings on the annual report might help. Second, coon: Bunting functions require a particular style to be effective, so the

choice of the office director is very important. There is a fine line between being forceful enough to have an impact on decisions and being meddlesome and ineffective in both line and staff functions.

Option 3New Maternal and °did Health Operadng Program

A third option is the creation of a new agency within the PHS

combining all or some of the following: Title V programs Family planning Adolescent health

Health education prevention programs for children School health

NICHE) This agency could also be given some or all of the coordinating

fractions described (under option 2) although coordination by one line agency of the activities of another line agency is usually of limited

effectiveness. The creation of a new agency might be accompanied by the creation of a new coordinating mechanism at a higher level in the

structure. In this arrangement, the new agency would be one of the units

to be coordinated_

There are two basic versions of this option: (1) A new bureau within HSA focused on service programs, leaving NICHD in NIH;

(2) A new agency within the PHS including NICHD and analogous

to ADAMHA combining service and research responsibilities. The argument for the second version is that the research and service programs would have a synergistic effect if they were located within the

same organization. The research programs of NICHD might broaden

their focus if more direct contact with the service programs is achieved

and if NICHE) were not a part of the biomedical milieu of NIH. The

service programs might benefit from contact with a strong research

environment that would provide a framework and address research needs generated by those service programs. On the negative side, the quality of research might be eroded by the move to the new agency. It has been difficult for other parts of the PHS to

emulate the research climate and prestige of NIH. Relevant research in maternal and child health may benefit from the power of the biomedical

lobby in defending the funding and the climate for research if NICHE) is

still within NIH. Because research relevant to maternal and child health is

also carried out and supported by many other units of NIH and ADAMHA, the relocation of NICHE) might actually lessen the total level of research directed at the health problems of mothers and children. There

seems to be very little support for the removal of NICHE) from NIH. A new bureau focused on maternal and child health services has the

obvious advantages of increased visibility, new opportunities for program

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628
coordination and integration, and the possibilities of creating an attractive

administrative climate for professionals. The disadvantages, in addition to the inherent disruption of current arrangements, are the splitting off of those programs with an exclusive

maternal and child health focus from those with a focus on the family and

that include very substantial services for mothers and children. This issue

is, of course, an important policy decision for the Panel. A tendency might also be to focus the new bureau almost exclusively on Title V and

relationships with the States, resulting in a weakening of relationships with

other primary care programs that are not directly related to State

responsibilities. This situation is also a policy issue rather than administrative issue. The case for a separate bureau might be strengthened if other

organizational options arc included. The most significant would be the

move of EPSDT or CHAP from HCFA to the PHS. This major organizational option would significantly alter the responsibilities and

character of the new agency. Another alternative, a separate bureau for EPSDT/CHAP, could be

established within HSA with coordination achieved at the HSA level

between this bureau and the maternal and child health bureau. A third

alternative would be a separate agency within the PHS for EPSDT/CHAP

independent of any organizational changes in maternal and child health

programs. These arrangements would not seem to capitalize, however, on

the possible advantages of such a significant transfer to achieving better

coordination among maternal and child health programs. This transfer

will be opposed because it would fragment the health financing programs

that HCFA has been attempting to integrate. However, CHAP differs

from Medicaid in its intent to reach out to eligibles to ensure services for

them. Title V and the other HSA programs could be viewed as

instruments for helping to achieve the objectives of CHAP. CHAP could

be seen as more compatible with the health services orientation of the

PHS and HSA rather than with the health financing environment of

HCFA, with its necessary focus on reimbursement methods, cost

containment, and reduction of fraud and abuse. The importance of

HCFA-PHS coordination previously was described. The transfer of

EPSDT-CHAP would simply alter the pattern and content of coordination. The PHS would have to work closely with HCFA in establishing

EPSDT/CHAP policies, and working out arrangements with HCFA for

deaJing with the State Medicaid agencies on matters of eligibility,

payment, and State nutching, funds. More programs might be added to a new maternal and child health

agency, including immunization programs of CDC and some ADAMHA

services relating to children. The judgment to be made in these cases is

whether the increased maternal and child health focus outweighs the

separation from professional and technical environments that are also

highly relevant to these activities. For example, it is unlikely that the new

bureau could acquire the expertise in immunization programs possessed

by CDC.

698 (-4
Option 4A New Children's Agency Within DHHS

This new agency could include all of the programs discussed under option C, but also include Head Start and social service programs for children. In essence, this option would be a recreation of the Children's Bur:au. The establishment of such an agency would make it feasible to

consider the transfer of maternal and child health-related USDA nutrition

programs, for such an agency would probably be of sufficient size and

stature to administer very large programs. The major virtue of this option is the inclusion of maternal and child

health in a broader social services context that would acknowledge the

importance of social and economic factors. The option also provides the

clearest focus for child advocacy within the Federal structure. This option is the purest form of the "target population" strategy (in

contrast to a functional strategy). As such, it would represent a

commitment to children, not just to maternal and child health. The

inclusion of health programs (including CHAP) might give a strong and popular thrust to a new children's strategy, and be more saleable politically than the social welfare orientation of the current Administration for Children, Youth, and Families.

The major liability of this option is the separation of maternal and child health from other health-related activities, many of which have very

substantial and direct impact on maternal and child health. The

functional rather than the target population relationship also gives more

immediate access to relevant expertise concerning the delivery and

organization of services.

Option 5Merge PHS and HCFA

This option is not like the previous four options, but such a merger might provide a much better opportunity to coordinate services and

financing. Most of the other options could then be implemented wi*hin

this option, but it would probably be easier to coordinate Tide V and CHAP, for example.

Option 6Reorganization of Congressional Jurisdictions

Some of the current fragmentation of Congressional jurisdiction over maternal and child health programs, such as the separating of legislative and appropriation jurisdictions, are basic elements of the Congressional process and as such cannot be changed. Steps could be taken, however, to

reorganize legislative and oversight jurisdictions to provide a clearer focus. The five basic options for change are as follows: (I) Transfer of jurisdiction into an existing committee

699
(2) Establishment of a new subcommittee

(3) Joint jurisdiction

(4) Establishment of a new select committee on maternal and child

healtk:

(5) Establishment of a joint committee Any of these changes involve many political considerations such as the

relative power of existing committee chairman and will not be discussed

except to indicate that these factors may dominate any real solutions.

Before considering specific options, the Panel will have to decide if it

wants the focus of the changes to be only maternal and child health or

broader children's programs. The latter is a broader constituency, and the

problems of traditional domains and existing jurisdictions would be

intensified. The shape of the committee jurisdiction changes would be

quite different This discussion is arbitrarily limited to maternal and child

health options. The first option, transfer of jurisdiction into an existing committee, is

the most direct approach, but it is also very difficult to achieve because

one committee loses what another gains. In the House, the committee

likely to accept the additional jurisdictions would be the Subcommittee on

Health and Environment of the Interstate and Foreign Commerce

Committee. The primary jurisdiction considered for transfer would be

over EPSDT/CHAP(now under joint jurisdiction of the Ways and Means

Committee and the Interstate and Foreign Commerce Committee) and

perhaps the WIC program from the Agriculture Committee. For example,

the Ways and Means and the Agriculture Committees are very powerful

and would not give up jurisdiction easily. In the Senate the transfer ofjurisdiction over these programs to the

Subcommittee on. Health and Scientific Research of the Labor and

Human Resources Committee would have more significance because

there is no present joint jurisdiction with the Finance Committee over

Medicaid as in the House. Jurisdiction over the family planning program

might be transferred from the existing Subcommittee on Child and

Human Development. This transfer illustrates the dilemma of functional

versus target groupjurisdictions. Another option is the establishment of a new subcommittee for

maternal and child health within each House so that there would be a

distinct focus for maternal and child health legislation. However, such

subcommittees would further splinter jurisdiction over health programs

and slight make coordination of legislative policy more difficult. An

atonal program in the Senate would have a corresponding relationship

to the existing Subcommittee on Child and Human Development A third option is joint jurisdiction over maternal and child health

legislation, especially EPSDT/CHAP, and perhaps the WIC program

along with the program of education for the handicapped. This model is

already used for joint jurisdiction over Medicaid and national health

insurance proposals by the Interstate and Foreign Commerce and Ways

and Means Committees. This approach avoids the loss of jurisdiction by

either committee. However, the legislative process, already complicated, is

700
made so complex that action on controversial issues might be almost

impossible.

A fourth option is establishment of a select committee on maternal and

child health in each House. The Select Committee on Nutrition is an

example of this approach. Select committees often have limited life spans, and are intended to provide a surge of Congressional attention to a topic

that is not receiving sufficient attention through the regular committee

structure. A select committee can be given actual legislative jurisdiction

(the power to consider and recommend legislation to the Congress) or the

jurisdiction can be limited to oversight (the power to investigate, hold

hearings, and issue reports). The former requires the transfer of some

jurisdiction from existing committees to the select committee and will be more firmly resisted than the oversight function. The select committee on maternal and child health could hold hearings on the annual special report_ An investigatory and oversight function can attract a great deal of publicity to a particular topic and can bring pressure to bear on the

committees with legislative jurisdiction, but the real power resides with

legislative jurisdiction. The fifth option is the establishment of a joint committee on maternal and child health. Again this committee could be given legislative

jurisdiction (an example is the now defunct Joint Atomic Energy Committee) or oversight jurisdiction (an existing example is the Joint Economic Committee). The comments regarding select committees apply

to this option as well. The joint committee is a very unusual device and its main virtue would be the unique attention that would be focused on maternal and child health issues_ This option is unlikely.

IMPLEMENTATION OF ORGANIZATIONAL

CHANGES

Too little attention is usually given to implementation of proposed

organizational changes, yet the achievement of the desired objectives often depends heavily on factors relating to implementation. The following are

some of the factors that must be considered along with any changes in the organizational structure. It is hoped that in its recommendations the Panel will give some explicit attention to these factors.

Explicit Strategy for Implementation

No reorganization should be undertaken without the development in

advance of an explicit and detailed strategy and plan for its implementation. The chaos and tension inherent in any change is great and would

only be exacerbated by a lack of planning at the outset. A well-developed

strategy and plan must take into consideration and address political factors as well as administrative details. Some interest group usually

opposes any change, and efforts must be made to mollify such antagonis701
tic forces. Internally, a good plan will help prevent morale problems by

providing a sense of purpose and direction to replace the comfort of old

ways.

Sufficient Time for Implementation

Full implementation of a change requires time, usually several years,

before all of the problems are overcome, positions filled, and new

procedures and relationships developed. Too little time is often allowed

for the settling of the new order. Major reorganizations should not be too

frequent or a general instability and poor morale can be created when one

change is forced on the heels of another. The PHS, the Office of

Education, Medicaid, and the child services programs have all suffered

from the effects of inadequate assimilation of previous reorganizations. A

good plan can provide for strong advances while still allowing adequate

time for implementation.

The Civil Service and Organizational Change

As stated previously, people are usually more important than organizational structure in meeting program objectives. Organizational changes are

sometimes used as mechanisms to replace people in key positions when

their performance is considered inadequate. Although this method may be

justified in the long run, Federal Government agencies must retain most

of their employees because of Civil Service tenure regulations.

Even if tenure were not a problem, the complex tasks facing maternal

and child health programs demand managerial and professional competence of a high order, and much of this competence is not developed

through the usual professional training or prior experience. What is

needed is a commitment to career development, with attention to the

development over time of knowledge, skills, and experience. Not only

does the Civil Service have a weak tradition of career development, but

frequent organizational changes provide strong disincentives for individuals to pursue long-range career goals. The erosion of the Civil Service

during the last 15 years can only be overcome by the same deliberate

attention to the development of competent staff that exists in the military

or in large corporations. Much of the training and structured experience must be specifically

designed to develop competence in the management of maternal and child

health programs at the Federal leveL This competence includes training

and experience with management of indirect programs (such as grants),

attention to Federal-State-local relationships, substantive knowledge

about the organization and evaluation of services at the community level,

and some knowledge of program-analysis techniques. Planned advancement could provide the range of experience that is a necessary complement to academic knowledge.

702

7 4,13
The Civil Service has traditionally emphasized the job and not the

person. If competence is to be developed over time, it must be person- specific. Perhaps the new Senior Executive Service is a step in the right direction. The Panel should note the importance of staff development for

the successful implementation tbf any of its recommendations regarding

the Federal role.

Leadership Turnover

The importance of competent career staff is intensified by the rapid

turnover of leadership at the political appointment level. Because this phenomenon is unlikely to change, a strong career staff is needed at senior

levels to provide continuity and expertise. Because of leadership turnover, any major organizational change should not depend on a political appointee for its viability. The responsibility of career staff and of such

groups as the Panel is to focus attention on long-range accomplishments. The time span of leadership for a specific appointee is almost always too

short for effective implementation of major new programs. Therefore, if

the Panel is recommending major new programs, specific attention should be given to a strategy for survival and development after the ideas have been sold to the current decisionmakers. This approach means attention

to internal and external constituencies who can be committed to the new

objectives.

Strengthening Regional Offices

As noted previously, Regional Offices have special problems and needs

in the area of staff development. In addition to clarifying the role of the Regional Office, specific steps should be taken to strengthen the staff for

the very complex tasks that face them. These steps might include the

following: Career paths for filling headquarters positions that include mandatory assignments to the Regional Offices patterned after career development in most major businesses Special training programs built around the particular challenges

faced by Regional Office staff due to the unique Regional Office

role

Seminar series that put Regional Office staff in contact with the

innovators in related activities so that Regional Office staff are at

least as exposed to new ideas as the central staff Maximum us of modern electronic communication systems

(including private satellite transmission circuits) to ensure full and

rapid communication by the written and spoken word between Regional Offices and headquarters and among Regional taffices A grade structure that recognizes the importance of this rate and

bonuses and incentive awards for good performance speciik;ally

targeted to the Regional Office staff

703
Advisory and technical assistance to Regional Offices relevant to

their particular and vital role (most of the current Federal

advisory structure focuses nationally recognized experts on

national aggregate policy concerns, yet these experts live in the

regions and could be used to advise the Regional Offices)

FACTORS TO BE CONSIDERED IN CHOOSING

ORGANIZATIONAL OPTIONS

Major organizational change should only be recommended if major

policy change is recommended and the link between them is clear.

Examples of these linkages are as follows: Option l (status quo) would be logical if the recommendations are

focused on the internal policies and funding of existing programs.

Option 2 (new coordinating mechanisms) presumes that existing

coordination of and priority assigned to maternal and child health

programs is inadequate and that internal improvements of each maternal and child health-related program will not in the

aggregate lead to the desired program impact without new

mechanisms of coordination and advocacy. The stronger versions

of this option presume that exhortation and information will not

provide enough leverage and that some friction with line managers

is a worthwhile price to pay. Extension of the coordinating

mechanism to the health financing program presumes that greater

health services emphasis is needed in administration of these

programs. Option 3 (new maternal and child health agency) presumes that

separate programs for maternal and child health are preferable to

family-centered programs as a means of providing services to

those in need. This option might also be the choice if a decision is

made to funnel Federal support primarily through State maternal

and child health programs rather than relying on direct project

grants to communities or assignment of National Health Service

Corps personnel (the primary mechanisms of HSA in its current

form). This option also presumes that the benefits of greater

identity and priority for programs primarily aimed at maternal

and child health outweigh the probable decline in leverage on

other health programs that have major real or potential impact

even if not the primary focus.

Option 4 (new children's agency) would be the choice if a major

new child-centered strategy were being promulgated that recreated the Children's Bureau with its multiple mechanisms to have a

broad impact on child development and welfare. maternal and

child health would be only a part (although perhaps an important

part) of the grander strategy. The policy thrust would emphasize

the whole child ana the synergism of other services with health

services at the risk of losing impact on other health services

programs.

704
Option 5 (merger of PHS and HCFA) is a contextual option that would support a strategy committed to providing required services and the services to meet child needs.

Changes in jurisdiction would reflect a commit- ment to special identity for maternal and child health concerns at a cost &some probable friction with existing Congressional health

leaders and the further splintering of health-related jurisdictions. If a major new strategy for maternal and child health is proposed, organizational chanscs can help to symbolize and implement the strategy, bat zoorganization without policy shifts is uni&ely to provide benefits. This is a corollary of the first principle. The Panel should be prepared to

reconnnend that reorganizations not be implemented unless the policy

changes or emphases that underlie the organizational changes have been

approved. The Panel should resist organization changes as cosmetic

substitutes for policy changes that have been rejected (a not unusual occurrence). The creation of the Department of Energy is an example of

this principle, both in the positive and negative sense. The creation of DOE represented the great importance of energy policy, but the DOE

difficulties stem from creating the organization before the major policy

issues were decided.

An implementation strategy should always accompany a reorganization

proposaL This principle follows from the discussion concerning the implementation of organizational changes, especially the concerns for the develop- ment of competent staff. Unless the Panel has thought through, and

recommended, some of the necessary conditions for successful implementation, a reorganization proposal would be incomplete. Wishful thinking

about the impact of organiz' ation changes should be avoided. Changes may be destructive in an organiiational environment already traumatized by (subjected to) frequent change. Expectations for the impact of coordinating mechstirisms should be modest; they work best when clearly linked to and identified with a new

policy commitment and when some specific tools of coordination are prvvided. This is another version of the major theme but it deserves emphasis. Everyone is for better coordination as an abstract principle, but many

coordinating mechanisms are of marginal or negative usefulness. Often

they are a substitute for confronting problems with line management. If

line management is the problem, direct changes in personnel or policies and more dearly focused responsibility for desired program changes are more effective. However, when the coordinating mechanism is linked to policy shifts then coordination can have real value. Good examples of

these are the Council of Economic Advisors and the Full Employment Act of 1946, the President's Science Advisory Committee, and the Sputnikinduced attention to science and technology in the late 1950's and early

1960's.

In making organizational recommendations, the trade-offs among

desirable, but incompatible, objectives should be made explicit. No major organizational change is without its costs. The most effective arguments for change anticipate and address these trade-offs and justify

705

7 61
the recommendation on balance. If the costs are not recognized, the

recommendations co:sic; rejected and unrealistic, and the results

disappointing. These 2. are difficult and seldom clearcut. Familyoriented care, the dm, of CHAP policies with other HCFA

policies, the focus of r y on line managers, and the reasonable

stability of organizations are clearly valuable goals. Yet most of the

options would compromise one or another of these values. These costs

must be justified in terms of the value to a clear societal investment in the

health of mothers and children and it is hoped this paper provides some of

the basis for effective arguments about desired trade - offs.

706
SECTION VI

HEALTH MANPOWER

CHILD HEALTH

PROFESSIONALS: SUPPLY,

TRAINING, AND PRACTICE

bY Purim Butlern. M.D., J.D., PEGGY McmArrus. M.H.S.,

SUZANNE STENMMUC. B.A., AND LAUREN LEROY, M.C.P.1

EXECUTIVE SUMMARY

The field of child health care is now experiencing the result of a time and quantity lag between "baby booms" and a "pediatric health

professions boom." Present projections show the supply of pediatricians alone is increasing at a rate that is greatly disproportionate to the rate of

increase in the number of children in the United States. Between 1975 and

1990, the number of pediatricians will increase from abort 26,000 to over 40,000, while the number of children will remain relatively constant.

Moreover, the simultaneous increase in the supply of family physicians, nurse practitioners, and other professionals means that the total number of child health care providers is likely to exceed even the most generous standards. The prospect of a physician oversupply could be the most significant factor that will determine the degree of use of nurse

practitioners, physician's assistants, and other allied health workers in the

fixture.

Although ideal provider-to-child ratios are not well established, any

dramatic changes in the relationship between the number of child health

practitioners and the number of children will have serious implications for

the character, scope, and costs of medical services as well as for manpower supply, training, and practice. This disproportionate growth could have markedly different implications, depending on child health needs. If a

large number of unmet needs are currently unmet, the new pediatric health workers might bring need and supply into balance. If, on the other

hand, the present provider-child ratios arc adequate, then the projected

increase would constitute a serious oversupply. Also, if the pediatric health workers are not well suited or trained to handle presently unmet

'Had& Poficy Program, Univer-Aty of California, Son Francisco, and 2233 lArnoonsin Avenue, NAV, Waslaiogton. D.C.

709
child health needs, then the increased physician supply could be

inappropriate even if the total number was not excessive.

In recent years a number of researchers and governmental agencies, as

well as the American Academy of Pediatrics, have attempted to determine

how many practitioners are needed to provide necessary .shild health care.

These efforts have resulted in many different estimate-, some more

reasonable than others, but all generally suggesting that an oversupply of

child health practitioners is likely in the future. Missing in almost all of the

manpower estimates to date is a thorough analysis of child health needs

that would provide an adequate basis for making decisions about the

number and appropriate training of child health care practitioners in the

future.

Because the child population is expected to increase relatively little over

the next 70 years, the challenges for child health are largely to produce the

right mix of practitioners, services, and resources necessary to meet

present and future child health needs. Generally, medical care is widely available to children. In addition, as noted above, the supply of

practitioners is expanding rapidly and should be in abundance in the

future. Nevertheless, substantial numbers of children today have no

regular source of care or no regular physician. Pockets of unserved

populations exist, particularly children in rural and central city areas, the

poor, blacks and adolescents.

In addition, numerous health care needs are not being met by the

present system. The most well-documented area:: of unmet needs include

adolescent medical care, certain disorders related to sexuality, family

planning, alcohol and drug abuse, mental illness, and chronic disabilities.

Solutions to the problems of unserved populations involve both the

supply of practitioners and the financial and other incentives that

determine practice location and character. On the other hand, solutions to

the problem of unmet needs are related to the education of health

professionals. The strategies for meeting child health needs must address

both types of problems. Education for child health professionals could be modified in several

ways. In keeping with the report of the Task Force on Pediatric

Education, all child health professionals should be broadly trained in both

the routine organic illnesses and problems and the psychological and

social aspects of health. Pediatricians, in addition to their more extensive

training in the management of complex disorders, should also have a firm

foundation in routine problems of infancy and childhood, in all aspects of

child growth and development, and in the genetic, family, environmental,

and social influences on the health of children. Pediatricians should, of

course, continue to provide the array of subspecialty services that will be

needed by children. The numbers of pediatricians should be more than

adequate in the coming years so that general pediatric education can be

expanded without threatening the supply ofsubspecia' lists.

A second aspect of child health care training that should be expanded is

the "team approach" to child care. The team approach does not

necessarily require any particular organizational structure, but it does

require recognition of multiple social and other factors that influence

health and disease status and that must be addressed in order to meet

710 7f
child care needs. Child professionals should have the opportunity to apply

their particular skills in settings that allow them to have access to o-ir specialists in child health care. Pediatricians will continue to provide the entire spectrum of child medical care services in the areas where they practice. Family physicians and general practitioners (FP-GP's) have demonstrated their willingness to practice in rural areas and their financial viability in such areas and along with nurse practitioners will be providing

the bulk of primary child care in these areas. In addition, the National Health Service Corps (NHSC) is an effort to provide health care personnel in areas that do not attract adequate numbers of health care providers. The training and resources available to NHSC staffs must be sufficient to meet all of the primary care needs in such areas if they are to be effective

in the future.

Family physicians, adolescent medical specialists, and nurse practition- ers have demonstrated their interest and skill' s in dealing with many of the

sexually related needs of older children. They will be expected to provide

the bulk of this care until general } .diatricians are also adequately trained

to meet those needs. The problems of the chronically handicapped child

are also best served by teams from a variety of disciplines. Nurse practitioners offer a particular strength in dealing with chronic problems

that require special support services along with medical services. A community health approach is needed to address the serious consequences of alcohol and drug abuse by youths. Programs to develop

awareness and to identify children with these problems must be broadly based and innovatively developed. All child care professionals must be

trained both to recognize these conditions in their acute manifestations and to refer children to the appropriate alcohol and drug services or to

other youth social services agencies for longer term counseling. A great deal of attention must be paid to mental health problems of children, such as learning, language, and behavior disorders. A significant increase in the number of psychologists and other professionals to deal with these problems should be encouraged. To complement this, however, pediatricians, FP-GP's and nurse practitioners also must expand their

training in developmental and behavioral disorders. Again, only a

coordinated team approach is likely to meet the great need in this area. In

addition, public and private insurance programs will need to restructure

their payment and reimbursement systems to provide such services adequately.

PRESENT AND FUTURE CHILD HEALTH

CARE NEEDS

Child Population Estimates and Trends

Child health manpower needs are determined in large part by the number of children in the population. The total child population trend for

the years 1975-95 resembles a U-shaped curvea decrease that bottoms out in 1984 will finally increase to the 1975 level by 1995. Between 1975

711
and 1985, the number of children under age 20 will decrease from

76,257,000 to 71,249,000 (table 1). Beginning in 1985, this population will steadily increase through the end of the decade and continue to grow

through the middle of the next century. Projections of the child population

into the distant future are subject to substantial variation as birth and

fertility rates change, but the current middle-range (Series II) estimate

from the Census Bureau calculates the number of children in the year

2050 to be only 14 percent above the 1975 figure (1-3). These crude trends, however, are not sufficient for determining specific child health care needs because the age distribution of children under 20 will shift markedly. Because the health care needs of the youngest differ widely from older groups, the population trends must be examined in detail. Beginning with the year 1980, children under age 5 show the earliest increase in number among the under-20 subgroups-from

16,594,000 to 20,133,000 in 1990. A sharp decline in numbers of this group

TABLE 1. Total Child Population by Aga Group, 1975-001

Number of Children Under Age 20 (In thousands)

Year 0-6 5-0 10-14 15-19 Tonal

1975 16.448 17,866 20.682 21.261 76,257

1976 15,888 17,984 20,084 21.469 75,425

1977 15,718 17,703 19,461 21.429 74,311

1978 15,843 17,417 18,829 21,322 73,411

1979 16,176 17.008 18.304 21.164 72,652

1980 16,594 16,599 18.038 20,851 72.082

1981 17,215 16,058 18,066 20,254 71.593

1982 17,881 15,897 17,877 19,642 71,297

1983 18,514 16.019 17,593 19.011 71,137

1984 19.060 16,352 17,193 18,486 71,091

1985 19,476 16.767 16,788 18.218 71.249

1986 19.759 17.387 16,246 18.249 71,641

1987 19,945 18,052 16,081 18,066 72,144

1988 20.065 18,681 16,201 17.784 72,731

1989 20,127 19,222 16,530 17.382 73,261

1990 20,133 19,635 16,941 16,974 73.683

1995 19,447 20,280 19.788 17,117 76,632

2000 18,491 19,593 20,422 19,958 78,464

2005 18, 722 18.651 19.742 20.605 77, 720

2010 19,909 18,887 18.805 19,938 77,539

2015 20.676 20,071 19,041 19,007 78,795

2020 20,556 20,836 20,221 19,247 80,860

2025 20.193 20.719 20.982 20,427 82.321

2030 20,327 20,368 20.870 21,199 82,764

2035 20.976 20,512 20,530 21.103 83,121

2040 21.560 21,164 20,675 20,771 84,171

2045 21.719 21,739 21.318 20,914 85.690

2050 21.666 21.889 21,880 21.547 86,982

Adivated for census undercount ass source 2.

SOURCES: (1) US. Bureau of the Census: Population estimates and

pro§ectlorsa. Estimates of the Pcsaulation or the United States by Age, Sex and Race: 1970-1977: (2) U.S. Bureau of the Cone= Protections of the

Popuisition of the United States: 1977-2050_ Series P-25, No. 704. July

1977.

712
occurs between 1990 and 2000 followed by a steady increase up to the year 2050. Trends for this youngest group, of course, determine the future age structure of the population modified primarily by the age-specific mortty rates. The number of children of ages 5-9 years decreased from 17,866,000 in 1975 and will continue to decrease until it reaches a low point of 16,767,000 in 1985. Following the trend of the younger age group, the group 5-9 years old will then increase in numbers between 1985 and 1995. decline until 2005, and steadily increase through 2050. The population with the longest decline is children ages 10-14 years. Their numbers will decrease from 20,682,000 in 1975 to 16,941.000 by 1990. The trend for this group then parallels that of the younger age groups from 1990 to the middle of the next century. Finally, youths ages 15-19 experience the greatest decrease among all children and youths between 1975 and 1990. which is followed by the same pattern of rise, fall, and then continued rise experienced by each population subgroup through 2050 (see table 1).

The short-term result of these shifts is that the child subgroups with the smallest numbers in 1980 (0-S and 5-9 years of age) will be the largest in 1990 and vice versa. During the 1980's the number of children under age will increase by over 21 percent; the number of children 5-9 years old will increase by about 18 percent; children 10-14 years old will manifest a very different trendthe number will decline by 6 percent and the number of youths 15-19 years old will fall by nearly 19 percent The long-range result is that the child population will grow only slowly, unless the current "baby boom" is of longer duration and reaches higher rates than have been forecast.

Child Health Care Requirements

A number of attempts have been made to estimate manpower

requirements for child health cam. These calculations can be made on the basis of "need" or "demand." "Need" attempts to measure the morbidity

or illness within a population that would benefit from medical care as well as the preventive and other services that would minimize illness and prolong life. "Need" differs from actual utilization to the degree that health care services are used inappropriately and to the degree that people who would benefit from medical care are not receiving it. "Demand" attempts to measure the quantity of medical care that a population will seek or accept at a given point in time. It is determined not only by need but also by the patient and practitioner preferences; economic conditions; the supply, organization. and distribution of physicians; and other factors that determine the utilization ofcare.

Desmond

Attempts to forecast future manpower requirements based on present utilization of health services are fraught with difficulties. First of all, such projections tend to incorporate existing inequities in the delivery of health

712 713
care. Similarly, they generally do not take into account the effect of

programs that are focused on current unmet needs such as the National

Health Service Corps. Finally projections based on present utilization do

not take into account the independent effects of manpower supply on the

demand fir health care services. Thus, to the degree that "physicianinduced" demand can occur, predictions based on present utilization

would v.---it:restimate future demand as the per capita number of

physicians increases. Similarly, to the degree that increased manpower

leads to a geographic redistribution of health care providers and an

increase in the numbers in areas with currently unmet needs, projections

based on present utiii7ntion would also underestimate future trends.

Although the size of the total child population is one of the significant

factors in determining demand for health care services, the age distribution of children also has a marked effect. For example, if 1975 age-specific

utilization rates were to remain unchanged, the total number of health

care visits by all children in 1990 would increase only about 3 percent.

Because of the expected increase in young children, however, the demand

for services by children less than 2 years of age would increase more than

one-third, and there would be a 27 percent increase in the demand for

health care by children aged 2-5. On the other hand, the demand for

services by older children would decline during the coming decade (table

2).These population shifts have important implications for the distribution

of child health practitioners. Pediatricians tend to see a much younger

population group than do FP-GP's (4, 5). Thus, if the only changes that

were to occur were the population age shifts discussed above, the demand

714

TABLE 2. Percent Distribution of Office Visits by Children

and Young Adults

Years

Age 1973 1975 1977

Under 15 years Pediatrician 36.1 43.7 48.6

GP-FP 37.4 34.1 32.4

internist 1.6 2.1 1.4

Ob-Gyn 0.5 1.1 0.3

15-21 years Pediatrician 4.9

GP-FP 45.5

internist 6.3

Ob-Gyn 14.6

All ages 21 or less Pediatrician 29.3

GP-FP 38.3

internist 3.6

Ob-Gyn 6.1

NOTE: Data from the National Ambulatory Medical Care Survey.

SOURCES: National Center for Health Statistics: Health United States,

1979 DHEW Pub. No. (PHS) 80-1232. Table 35: National Center for Health

Statistics: Ambulatory Care Utilization Patterns of Children and Young

Adults. National Ambulatory Medical CareSurvey. U.S.. January-December

7975. Series 13, No. 39. August 1978.

77
for child services from pediatricians would increase nearly 20 percent, while that for FP-GP services would increase just over 2 percent. The actual effect on practice patterns, however, is likely to be much more complex. As the supply of pediatricians and FP-GP's increases

substantially over the coming decade, child health care may be redistribut- ed between the two specialties. Projections based on present utilization, then, are of limited value in

drawing conclusions about training and practice patterns for the future. Present utilization is largely a reflection of the present supply of manpower and existing economic and other demographic chazacteristics. Basing policies for the future on present demand would tend to replicate present conditions and not to address existing inequities. For these

reasons, it is more appropriate to analyze child health care needs rather

than current utilization as a basis for policymaking.

Unmet Child Health Needs

Unmet child health needs can be separated into two main types. One group consists of those children who still have very limited or no real access to medical care or to other health-related services. The second

group includes children who may have access to medical care, but who

have specific health needs that are not being treated adequately by their health care practitioners. The implications for training and practice of health care professionals differ greatly depending upon the type of unmet needs. In general, solutions for unnerved population groups involve both

the overall supply of practitioners as well as the financial and other

incentives that determine practice location and character. On the other hand, solutions intended to address needs that are currently overlooked or

inadequately met also require attention to the educational process of health professionals.

Underserved Groups

The proportion of children with limited or no access to medical care has been declining in recent years. Now, more than 90 percent of children

have a regular source of health care (6, 7). Nevertheless, over 4 million

children still had no usual source of care as recently as 1978 (6). In

addition,-if those children who have a usual source of care but no regular physician are also counted, then some 30 percent of all children fall into

the underserved category (6). Thus, although the situation has been

improving in the past decade, significant barriers still exist to care for a

substantial number of children.

The population gioups that have the highest degree of inadequate

access are those in central cities and rural areas, the poor, adolescents, and blacks. In the central cities in 1974, over 23 million children had no

regular sour of care (6). In addition, 3.4 million children had no regular physician (6). us, although more than 2 out of 3 children had a regular p , n y 6 million children in central cities were still without regular access to physician care. Very nearly as many children in rural (non-SMSA) areas (23 million) as in central cities had no regular source

714 715
of care. Children in suburban areas generally had excellent access to

private physicians, but even in that group nearly 2 million had no regular

source of care.

Closely related to geographic location, of course, is income. Children in

families with total incomes less than $5,000 had very limited physician

access in 1974 (6). More than 18 percent of those children had no regular

source of care and another 19 percent had no regular physician. Thus, 37

percent of children in poorfamilies had limited or no access to care, a rate

nearly three times that of children in families with incomes of $15,000 or

more. It is interesting to speculate that the difference among the income

groups was largely due to a relative lack of access to pediatricians. Among

children who had a regular physician, the percentage of children regularly

seeing a general practitioner was relatively constant (ranging from 42 to 49 percent) across income levels, while those with regular access to

pediatricians varied from 15 percent in the lowest income group to over 36

percent in the highest income group (6). This parallels the geographic

imbalance; pediatricians were twice as likely to be the regular source of

care for children in the suburbs than in rural areas, and children in the

central cities also lagged behind the suburban areas in access to pediatric

services.

The third group with a relative lack of access to medical care comprises

the adolescents in this country. The percent of children with no regular

source of care increases dramatically with age (7). The rate for adolescents

16 and 17 years of age was nearly 15 percent in 1974 (6), more than double

the rate for children under 6 years of age. If those who had no regular

physician are included, nearly one in four adolescents 16-17 years of age

had inadequate access to medical care in 1974. The rate for those 12-15

years of age was nearly 22 percent. Adolescents do not have regular physician care for many reasons. First,

adolescents are generally, although often inaccurately, thought to be too

healthy to require medical care. The "hidden" medical needs of adolescents are discussed in the following section. Second, adolescents are

frequently unwilling to seek medical care and to admit their need for

medical care (8). Although racial differences have declined remarkably in the past 15-20

years (7), blacks continue to have a disproportionate degree of unmet medical needs. Even when corrected for income, blacks use physician

services less than Hispanics and whites (6). Urban blacks are second only

to southwestern Hispanics in failing to have a regular source of care (7). In

1978, the rate of having no usual source of care among black children was

one and one-half times the rate of that among white children and was

nearly twice the rate of having no regular physician (9). Taken together,

more than half of all black children in 1978 had either no usual source of

care (9.7 percent) or no regular physician (40.5 percent) (9). It is

impossible to separate out all of the related effects of race, income,

geography, and age, but it appears that black children still constitute a

distinct underserved group. In sum, the vast majority of children in this country have excellent

access to medical care_ but a substantial number of underserved exist and

716

-t_ 3
are concentrated in specific geographic, socioeconomic, age, and racial

grouPsAdokscent Medical Care

For many health professionals, adolescents constitute a "hidden" group with unmet health care needs. This situation has been well described by Hein and Cohen:

Although adolescence is often considered a healthy period of life, there are clusters of illnesses, conditions and factors which necessitate a special approach by the health professional for youngsters in

this age givuP (10)- Adolescent health problems include many characteristic medical problems such as scoriosis, acne, and mononucleosis OD. More typically "adult" causes of morbidity and mortality also begin to appear, particularly with

the very high rates of violent death and injury and of alcohol abuse among

adolescents (12). Many young people with these problems are already

being cared for (table 3). Surveys of defined populations, however, have

reported a significant number of untreated health problems. For example, physicians examining a maple of black youths in Harlem in the late 1960's found that for every condition that was already being treated there were eight conditions requiring treatment (13). Nearly half of the youths examined were referred for medical care. Similarly, among adolescents in detention facilities in New York City, 46 percent were found to have medical conditions (14). Because 0.5 million of such high-risk youngsters are in detention in the United States (14), this constitutes a very significant body of unserved medical care need. The degree to which adolescents in lower risk socioeconomic groups have unmet medical care needs has not been documented. Because

adolescents are 'mown to be reluctant to seek medical care, however, a

substantial reservoir of need is assumed to exist even in adolescents with

regular sources of medical care. Analyzing access to medical care in terms of a "symptoms-response ratio," Aday, Andersen, and Fleming concluded

that

it is older children and young adults who get less care in response to

their symptoms of illness than the physician panel thought appropri- ate. These are the groups also least likely to have insurance coverage

and to receive physician services(15). The areas of specific needs that have been identified include alcohol and drug abuse; behavioral, learning, and mental health problems; chronic and handicapping conditions; and sexually related conditions and

diseases.

Sexuality and Family Planning Needs

Adolescent pregnancy has become a less critical health problem in

recent years, but other sexually associated conditions have worsened. Since the mid-1970's, the rate of adolescent pregnancy has declined by

nearly 11 percent (16). Sexual activity has soared, however (17). As noted

71 6 717
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157,431 1000 25,861 103.0 26,136 100.0 48,50 MO 58,410 100.0

10,486 6.6 1,822 8.3 1,758 6.6 3,634 1.9 3,401 5.8

1,548 1.0 15 0.7 116 0.4 198 0.4 783 1.3

2,309 1.5 196 0.8 182 0.6 524 11 1,427 2.4

3,671 2.3 106 0.4 147 0.5 1,210 2,7 2,144 3.1

15,341 V 2,424 9.4 3,860 13.7 5,477 11.8 3,774 6.5

1,142 0.7 63 0.3 119 0.4 259 0.6 681 12

35238 224 5,920 23.1 8,845 33.1 11,910 25,6 8,563 14.7

3,316 2.1 452 1.8 392 1.5 949 2.0 1,583 2.7

8,079 3.9 170 0.1 ON 2.3 991 2.1 4,310 1.4

11,252 71 1,159 4.5 1,373 5.1 3,141 8.0 4,913 8.5

3,021 1.9 429 1.7 322 1.2 894 1.9 1,35 2.3

6,772 4.3 698 2.7 1,158 4.3 2,357 5.1 2,560 4,4

13,385 8.5 643 2.5 1,962 1.4 4,816 10.5 5,917 10.1

39,865 25,3 10,60 41,7 5,544 20.7 8,211 17.6 15,391 214

2,811 1.1 837 2.5 418 1.6 186 1.7 770 1.3

825 0.5 149 0.6 93 0.3 223 0.5 381 0.6

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by Zebu lc and Kantner, between 1971 and 1976 a 50-percent increase occurred in the proportion of 17-year-old girls who have had sexual

intercourse at least once (18). Among adolescents in detention facilities in New York Qty, Hein et aL reported a mean age of 12 years at first

intercourse (14).

The disparity between increasing sexual activity and decreasing birth

rates appears to be the result of an increasing reliance on abortion and the use of more effective contraceptives_ Utilization of family planning

services by teenagers has sharply increased.. In 1969, fewer than 300,000

teenagers used such services, but by 1975, over 1 million received family

planning services (18). Still, almost four out of five adolescents engaging in

sexual activity and not intending pregnancy do not use contraceptives

regularly (18).

The consequences of increased sexual activity among teenagers include pregnancies, sexually transmitted diseases, abortions, and an earlier and

increased risk of carcinoma of the cervix. Approximately 25 percent of

teenage women have had at least one pregnancy by the age of 19 and

about 1 million young women become pregnant each year (12). There are

a number of inherent risks in teenage pregnancies. Very young mothers commonly have hypertension during pregnancy, premature labor, or a

small pelvis contributing to birth injury (19). The infants of these mothers

also have an increased risk of being premature or of low birth weight_ Mothers under 15 years of age have the highest risk ofany age group for producing a low-birth-weight infant (20). Fortunately, this group has

remained small, with very low birth rates, and accounts for only one-third of 1 percent of births (16). Teenage mothers encounter a number of social problems such as disruption of education and high rates of public

dependency. Sexually transmitted disedses are another significant consequence of sexual activity. In the mid-1970's, gonorrhea had reached epidemic proportions_ Recent information indicates the incidence has stabilized_ Still, nearly 8 percent of ;ernales screened upon admission to detention

facilities had asymptomatic, unsuspected gonorrhea (14). Gonorrhea, syphilis, and two more recently appreciated major public health problemsherpes virus and nonspecific urethritisaccount for 8-12 million

cases of sexually transmitted diseases per year (21). Young people between

the ages of 15 and 24 represent 75 percent of the reported cases. In

addition, 75,000 women of childbearing age became sterile as a result of

pelvic inflammatory disease caused by sexually transmitted disease (21). With the increased number of pregnancies, there has been an increased

use of abortions by these women. Three out of every 10 teenagers decide

to terminate their pregnancies (22). As a result of the recent Hyde Amendments, a reduction in the number of legal abortions may result in

increasing birth rates or more illegal abortions among teenagers, as well as

among others. Adolescents utilize a variety of health care settings for treatment related

to sexuality and family planning needs. They generally receive care at clinics and health centers such as venereal disease clinics, family planning

clinics, teenage health centers, and in the offices of FP-GP's. Although

teenagers' use of family planning clinics has increased dramatically, their

719
use of prenatal care is lower than any other age group. Those aged 15-19

years are the least likely to receive prenatal care in the first trimester (53

percent of teens compared to 81 percent aged 25-34 years in 1975) (18).

Additionally, they were the most likely to have no prenatal care at all-2

percent in 1975 (23). Increased sexual activity among adolescents creates the need for sex

education, family planning counseling, and parenting education as well as

medical care to alleviate the associated problems. Public Law 95-626,

Titles VI and VII of the Health Services and Centers Amendments of

1978, is designed to develop programs to prevent adolescent pregnancy

and to provide care and support services for pregnant adolescents and

young parents. A wide variety of care services must be provided by

adolescent pregnancy programs to meet the needs and objectives of the

act.

Sexuality-related services for adolescents should be offered in settings

where the adolescent is most comfortable and secure (24). Two studies

commissioned by DHHS' Office of Family Planning indicate that

adolescents were more concerned with privacy and nonjudgmental sympathetic treatment than with the physical surroundings of the

treatment center (23). Clinics and community health centers may be the

more desired and appropriate location for sexuality-related and family

planning services for young people. As an alternative, family physicians

and appropriately trained pediatricians could assume this role to a greater

degree if they provided settings adapted to the ages of such patients and

assured full confidentiality fortheir adolescent patients.

Alcohol and Drug Abuse

A major health problem of youths today, although seldom treated in

health care settings, is misuse of alcohol. According to a 1974 national

study of youths 12-18 years of age, 74 percent of teenagers drink (24).

Among youths who drink, 19 percent were identified as problem drinkers.

In other words, of those youths who drink, some 25 percent have either

been drunk at least six times in the past year or have had trouble with the

police or with friends two or more times in the past year as a result of

drinking. The frequency of drunkenness among youths is three to four

times greater than that for all drinkers in the United States (25). As

expected, the incidence of problem drinking increases with age, from 5

percent and 4.4 percent among seventh grade boys and girls, respectively,

up to 40 percent and 21 percent among twelfth grade boys and girls,

respectively. Early findings from a 1978 study by Research Triangle

Institute show striking similarities to the 1974 figures?

A comprehensive review of youth drinking surveys conducted between

1945 and 1975 (26) found that the percentage of youths who report getting

drunk has increased steadily, while the prevalence of teenage drinking has

remained relatively constant since 1965. Between 1966 and 1975, the

2Personal communication. S. Maloney. National Institute on Alcohol Abuse and Alcoholism (NIAAA).

Division of Prevention. July 1980.

720 7'p
proportion of youths getting drunk at least once a month increased to 19

percent compared with 10 percent before 1966. Unlike adults with alcohol problems, youths seldom suffer from

alcoholism, but rather episodic and binge drinking. The health problems

related to this type of misuse of alcohol are usually impaired driving performance, accidents, aggression and violence, disturbed personal relationships, property damage, impaired school performance, and im- paired job performance. Unfortunately, data on the relationship between

alcohol and these specific health problems, with the exception of accidents, are unavailable. According to the Surgeon General's Report on

Health Promotion and Disease Prevention (27), accidents are the number

one cause of death in the 15-24 age groups, and some 60 percent of all

alcohol-related fatalities are among young people (28). Children of alcoholic parents also manifest a substantial number of unmet health needs; at least 28 million children are estimated to be so

affected (29). The major health problems encountered by these children

are hyperactivity and enuresis (30. Commonly reported mental health

problems include antisocial behavior, poor self-concept, depression, and

suicide (30). Entering adulthood, children of alcoholics are at very high

risk for developing alcohol-related problems compared with child-en of nonalcoholic parents (30). Second only to alcohol abuse problems among youths are problems associated with illicit drugs. Before 1962, less than 2 percent of the population had any lifetime experience with illicit drugs (28). A recent

National Survey on Drug Abuse found that between 1972 and 1979, those 12-17 years of age doubled their use of marihuana and cocaine (31). For

those 18-25 years of age, cocaine use tripled and marihuana use increased by 70 percent (table 4). This same report found that 17 percent of youths 12-17 years of age were current users of marihuana. This proportion

increased to 35 percent among those 18-25 years of age. For cocaine use

in the same populations the increase went from 1 percent to 9 percent A very recent survey of 1978 high school seniors revealed that over 10 percent used marihuana daily, 5.7 percent drank alcohol daily, and 27.5

percent smoked (32). The relationship of these alcohol and drug abuse prevalence figures to

the utilization of health care services and providers is unclear. Unfortu- nately, the majority of these youths are not seen by health care workers, and if they are seen, they are seldom diagnosed as drug abusers. When

health problems such as sprained ankles occur as a result of drinking or drug use, youths appear for treatment but often are diagnosed only as having a physical and not a behavior-related problem. Teachers, school counselors, nurses, social workers, and police are much more likely to

identify and counsel these youths than are physicians_ One study, conducted in Allegheny County, Pennsylvania, has examined the relationship of alcohol abuse prevalence to the utilization of health care services.3According to a random sample of 650 youths, aged

3Personal communication. D. McCartney. principal investigator on NIAAA study. -Tri-County Study

of Adolescent Drinking." CONSAD. Pittsburgh. Pa-. July 1980.

721
TABLE 4. Dies Abuse SW Macs, 1979 Preliminary Population Projections

12-17 Years (pop. 23,419,000) 19-25 Yams (pop. 31,995,000)

Drag % Ever used' %

Current

were % Ever Used

Marihuana and hashish 31 7.300,000 17 4.000.000 68 21,700.000

inhalants 10 2.300.000 2 500.000 17 5,400,000

Hallucinogens 7 1,600.000 2 500.000 25 8,000.000

PCP 4 900,000 15 4.800.000

Cocaine 5 1200,000 1 200,000 28 9,000,000

Heroin 0.5 100,000 4 1,300,000

Stimulants 3 700.000 1 200.000 18 5,800,000

Smiathres 3 700.000 1 200,000 17 5,400,000

Tranquilizers 4 900,000 0.6 100,000 16 5,100,000

Analgesics 3 700.000 0.6 100,000 12 3.800,000

Alcohol 70 16,400,000 37 8.700.000 95 30.400,000

Cigarettes 54 12.600,000 12 2.800,000 83 26.500,000

*Ever used used one or moss times in a person's lire.

'Current user used at least once in the 30 days before the survey.

KEY: ' not included in the survey t amounts less than 0.5 percent are not listed-

%

CU rent

Mar

11.200.000

300.000

1,300.000

2.900,000

1.300,000

1.000,000

600,000

300.000

24,300,000

13,800,000

12-18, the prevalence of problem drinking (as defined above) was 14.6

percent. The percentage of youths. having health care visits were as

follows: Drug treatment programs 1.2 percent

Alcoholism treatment program 0.7 percent

Community mental health centers 1.6 percent

Child welfare agencies 1.9 percent

Social service agencies 1.6 percent

Unfortunately, physician offices and hospitals were not included in the

questionnaire. For problem-drinking youths, only 15.1 percent had any

kind of help, primarily in alcohol or drug treatment centers. Based on this

study, then, it appears that almost 85 percent of youths who need alcoholrelated counseling and treatment are not getting it.

Mental Health Problems

Accurate estimates of the incidence and prevalence of mental disorders

among children are seriously limited because of the lack of agreement on

appropriate indicators of mental In fact, for this very reason no

national estimates have been released on mental illness among noninstitutionalized children. The National Institute of Mental Health (NIMH) is

designing a new classification system that will include mental disorders,

psychological symptoms, and social problems (33).

Current projections are made from reports of children utilizing mental

health services and very likely understate the need (34). Based on NIMH

tabulations (35), one-quarter of all those admitted (385,237) to State and

county mental hospitals in 1975 were under 25 years of age. The age group

with the highest percentage of admissions were those 18-24 years old and

722
2.4- Yeses (pop- 123,1641,000) Tete, (pop. 17%3511,000)

Ever Used %

Cement

User % Ever Deed Current

User

20 241.000.000 6 7,400,000 30 54.800,000 13 =600.000 4 5,000,000 0.5 600,000 7 12,700,000 1 1,400,000 5

2

64200.000

2,500.000

9

5

15,800,000

8,200,000

1

a

1,8G0.000

4 5,000,000 1 1,200,000 8 15,100,000 2 4.400,000 1 1,200.000 1 2,600,000 6 7.400.000 0.5 600,000 8 13,900.000 1 2,1000,000 4 5,000.000 6 11,100,000 0.7 1,200,000 3 3700.000 5 9,800,000 3 3300.000 5 82,000,000 92 114.000.000 61 75,000,000 90 160,800.000 61 108,600,000 83 103030,000 37 45,900,000 79 142,100,000 36 62,400,000

constituted 19 percent of the total. Some 2 percent -4- the admissions were under 14 years old and 4 percent were 14-17 .ars old. Similarly, in

private psychiatric hospitals, youths under 25 years old represented more than a quarter of all admissions (7,864). A slightly different age breakdown was noted-15 percent for the 18-24 age group, 9.5 percent for

the 15-17 age group, and 2 percent for those under 14.

In 1975, general hospital psychiatric inpatient units also reported that about one-fourth of those dischargedwere under 25 years of age, of whom

18 percent were in the 18-24 age group, 7 percent in the 14-17 age group, and only 1 percent in the under-14 age group. In 1975, over 40 percent, or 1,406,065, of all admissions for outpatient psychiatric services were under 25 years of age; the older youths ages 18-24 represented the largest percentage, or 16 percent; the 13-17 age group, 11 percent; the 7-12 age group, 10 percent; and those under 7,4 percent. Although these data on the use of mental health services show that young people account for a large portion of all admissions, precise

estimates on the total number affected by mental and behavioral problems and the amount of unmet need are as yet unknown. If the situation for children parallels the estimates from adult data, the unmet need is great. While recognizing the data limitations, Regier et aL estimated that at least 15 percent of the U.S. population is affected by mental disorders in any

one year, but only a fraction of these people received care (36). According to a recent review of child psychiatry literature, Robbins estimated the prevalence of mental disorders in children to be between 5 and 15 percent (37). These prevalence rates are reflected in surveys of physicians but not in routine physicians' reports. Based on several studies of pediatricians, family practitioners, and nurse practitioners (4, 38, 39), only about 1 percent of children are reported to have mental disorders. However, when practitioners were asked specifically about the presence of

723
behavioral problems, the numbers (3-25 percent) were much higher

(39-4/). Another indicator of serious mental health problems among adolescents

is the increasing rate of suicides and homicides. Suicide, the third leading

cause of mortality among teenagers and young adults, accounted for 5,600

deaths in 1977 (42). The suicide rate for youths has increased fivefold

since 1950. The mortality rate does not, of course, include the high

number of unsuccessful attempts at suicide, which may be three times the

reported death rate. Among suicide victims, white males represent the

largest number. Homicide deaths among youths 15-24 years old numbered about 5,250

in 1977 (42). This number accounted for over 10 percent of all deaths

among adolescents. Homicide is the leading cause of death among black

adolescent males and far outnumbers the rate among white males.

Both the National Ambulatory Medical Care Survey (NAMCS) (43)

and the Health Interview Survey (HIS) (44) show a low frequency of

alcohol-, drug-, and mental-health-related reasons for visits or diagnoses.

For example, the 1977 NAMCS shows that mental disorders represent

only 13 percent of the reasons for visits for youths under 15. The HIS, for

1975, shows that 3.1 percent of the total number of visits to physicians

were for mental and nervous disorders. The large gap between these

studies and the independent estimates of mental health needs suggests that

the need for mental health treatment may be unmet, that providers other

than physicians are delivering much of the care, or that the reporting

systems are inadequate in the area of mental health.

A recent report by Stall tld and associates at the Johns Hopkins

University suggests that mug.. 3 of the discrepancy between the routine

reports and the special studies lies in specific characteristics of die

national surveys (41). In particular, they suggest that the sampling

techniques, diagnostic coding systems, and the practice of reporting only

first diagnoses all tend to and _ _..mate the degree of psychosocial

morbidity when compared with specific studies. In addition, they also

noted several factors that would tend to reduce the likelihood that

physicians would, in fact, diagnose and treat psychosocial illness. These

factors include present reimbursement practices that stress payment for

technological procedures, high case loads and short duration of physician

rotations through ambulatory care teaching facilities, and the willingness

of physicians with limited psychosocial training to deal with problems of

this nature.

Chronic Disability4

Estimates of chronically disabled children in the United States range

from 103 to 14 million, or 12 to 13 percent of all children. Over the next

decade, the number of affected children is projected to increase in

4For a detailed discussion of the needs of chronically in and handicapped children. see Henry T. treys in

this volume.

724
proportion to the slightly increasing birth rate (45). Chronic handicapping

conditions cover a broad spectrum of problems including disorders of the central nervous system, musculoskeletal problems, cosmetic disorders, nutlignanciw, mental retardation, psychiatric and severe development disorders, and persistent learning disabilities (46). Severe functional

disabilities associated with these conditions affect a relatively small proportion of the population. Of the noninstitutionalized children under 17 years of age, 3.4 percent are limited in their activity. Just over one-half

of that group are limited in their major activity such as regular preschool or school activities and play (47). An estimated 23 percent of all children live in long-term residential

institutions (48).. The majority of these children are profoundly mentally

retarded, multiliandicapped, or severely emotionally disturbed. The

remainder of the chronically disabled population of children live with

their families and are relatively less limited in their activities. As a group, chronically disabled children have distinctive needs. Generally, they have an increased need for primary care and hospital services. Many children with chronic conditions require frequent examinations and other health services because of their increased risk of infections

and accidents. These children suffer also from acute condition that

require hospitalization more frequently than do children with no chronic

problems (45). In a survey of 200 handicapped children, one-fifth had been hospitalized in the previous 12 months due to other medical conditions (45). Frequently, mentally retarded children have medical problems distinct from their mental retardation (45). Of the total U.S. noninstitutionalized population under the age of 24 years, the average number of physician visits per person per year was nearly four times greater for individuals limited in a major activity than

for the total population. For those limited, but not in major activity, the number of visits was approximately twice that of the total population

(table 5) (49). Psychological and social assistance for chronically disabled children

represents another distinctive need. Handicapped children and their

families are more likely to have psychological and social problems, especially "adjustment" problems compared with healthy children and

their families. A wide variety of factors determines the psychosocial adaptability of the chronically disabled child and family. For example, the

impact of a chronic condition may be inversely related to the severity of

the condition. In other words, moderately severe conditions may have a more adverse effect on psychosocial functioning than either mild or severe chronic conditions.

A continuum of medical, physical, and psychological services as well as

transportation, housing, employment, and educational services is neces- sary to meet the distinctive needs of chronically disabled children and

their greater utilization of health care services. Presently, physicians have

little specific training in working with the handicapped child's environ- ment and coordination of care (45). A system of training and coordination of health care professionals, educators, and psychologists will help meet

the needs of the chronically disabled children.

72.1 725
TAME f. Nataber at Physician Vieille by Degree of Activity LinoNstion

Chronic= My Disabled Children

Todd

Age Papal. Om

Not Umulled United -Not

in hs Motor

AcilwIty

Limited In

Amount or Kind of

Nape Acfloily

Unsibl

Carry on Senior Activity

Al MOSS 5.1 7.4 10.5 12.5

0-24 4.9 4.6 8.7 13.7 10.8

0-14 52 4.9 29.6 14.3 13.7

'Maier activity abet, to week. MOP house. or engage ln school or preschool activities.

vlaumber for 5-14-year-oids.

SOURCP.: U.S. Department of Health. Education and Welter= Current Estimates from the Health

Intervism Survey. Sense 10. No. 126. DHEIN Pub. No. (PHS) 78-1554. Sicalainbar 1978.

PRESENT AND FUTURE PRACTIIIONERS

Pediatricians

Supply and Requirements

A variety of different projections published by the American Medical Association (AMA), the Bureau of Health Professions (formerly the

Bureau of Health Manpower), and the Graduate Medical Education

National Advisory Committee (GMENAC) demonstrate the remarkable

growth in the supply of pediatricians expected over the next decade (table

6). Earlier estimates showed an average increase of over 100 percent or

approximately 25,000 pediatricians between 1975 and 1990, while more

recent GMENAC figures are closer to 65-70 percent. These projections

reflect the trends of the early and mid-1970's, a time of rapid growth in

medical school enrollments (50) and movement of graduate physicians

into primary care specialties(51). Whether doubling the number of pediatricians will in fact bring

manpower supply and child health needs into balance has been the subject

of much discussion but little analysis. The literature is dominated instead

by standard physician to population ratios that are generally based on

current utilization or consensus opinion (52). The major variables include

alternative providers, practice arrangements, or physician productivity.

Only a few analyses have considered pediatric manpowerrequirements in

terms of child care needs (53, 54). Unfortunately, existing methodologies

are often based on idealized standards of care or unrealistic estir- to= of

resources and thus arc limited in value. Nearly all the different e nates

suggest, however, that present supply is nearly adequate and that the 1990

figures will constitute an oversupply. Because of the shortcomings of the earlier studies, the Bureau of Health

Professions and the Graduate Medical Education National Advisory

Committee have undertaken major studies of physician manpower

requirements (55). Their approaches are quite distinct. The Bureau of

Health Professions uses a utilization-demand methodology, while

726

7
Tait 10 Nubs ad Mull* d if* Aden Podleindes, MIIMIOmMIBBIMIMM#11MENIMiM===iiIIMINNINIO

Iwo 104 WI 1171 1111 1111 1160 1116 1163

(41) HO Ammo Okilista 23X0

(2) d NooMb Wow 22,810 24,345

(4 kis d Mom Wow 22* 24,320

(4)J. blab 24918

(A raid and

(I) MK *1110) 24J17

Mom d 23X 24,588

bum d thr Caw Cticte

por lol Oa ONO 2,756 2,551 2,487 2349 1,903 1,504 1291 (4 X00 222190

Gibs I* pidttim 2,128 1,733

XX 42,530 51,170

3,210 42,93e

33,100 41,150 50,100

33,573 421828 51,221

25,683 24455 27,839

25,* 26,456 21,839 AS 42A60 stas

idoloMINNIdolo,

ltddiopoiltioNwigiwaukti5,1):01)(1,04

6111at

(I) korai ANW/Ikx Papatc4 to Ora* Modal Rob NOM kiikry CowiNo lo *WI. MYRA, No. (IPA) 11.03,

441Wit

(2)Isonottheb lbws, N. Rage *MOM A bpi b Proldoot el ens 9iba d Poloolca %Val ill to Mid

SIM MVP* 1400)11413,4111178.

blood NoilI Wpm PosatAi*kkake Si p vdDitibice ONOcirsol POO* Blorges. DOM tio.(HIL4 18.11,1915,

(4 Ittok,J. PoiitimodatiOolFirrninittoonefor 2000. Corkr b Hob Spice kW sod DovogeortMelo Modal *AM

URAft. Pollat ProloctlAricdPiactobtioUrilOtii, W1974117'1

(4 /Ow bid Moja: *ad b WO* opts of *An frectiol by AMA all cluilot *lift portions* to 2,031 h 1975; 2,317

1.4201$ThAWIt NS*

(1) bloweloCroutOriwt Piot& Awl P-25,Na O and Peo.170, 84.161 aidicoa.

0) WM. bird bake MOWN ?Alloy Ccarbo PERO Roil Poi et Ito iloMI (NO, Aulit

7'6
GMENAC has adopted a needs-based approach. Unfortunately, both

have serious limitations.

The Bureau of Health Professions divides present utilization into

categories such as medical office, short-term hospital, and other settings. It then projects changes in utilization in each category based upon

population and demographic shifts over time. Thus, changes in demand

that might result from an increased number of children in the population, or from a smaller number of people with incomes below the poverty level, would be taken into account. Changes in medical practice, however, would not be considered. Hypothetical developments that could modify

ciernand, such as the appearance of national health insurance, are included

in a supplementary contingency model. The results of the Bureau of Health Professions methods for pediatrics

show the total number of pediatricians needed by 1990 to be 22,349 (table

7), a negligible increase over present levels. In addition to the weaknesses inherent in the demand-utilization

projections, the Bureau of Health Professions' projection also has serious methodological shortcomings when applied to individual specialties. Because they were designed to produce aggregate figures for all physi- cians, the Bureau of Health Professions' projections of utilization growth

are not specialty-specific. Thus, their calculation applies utilization

projections based on average demographic and economic trends across age groups to specific estimates of the number of pediatricians engaged in

728

TABLE 7. Bureau of Health Professions Pediatric

Requirements Projections

Actbrity

Number of

Pediatricians

Engaged In

Thts

Activity

1975

Projected Utilization

Growth

1975-90

Projected

1990

Manpower

Requinonsents

(Col. 1

times

Col. 2)

Medical office

General care 568 108.9 619

Pediatric care 12,061 101.1 12,194

Other care 271 111.0 301

Short-term hospital Outpatient care 638 95.6 610

Surgical care 49 110.9 54

Medical care 6,179 103.3 6.383

Long-term hospital Other care 131 110.5 145

Cher settings Noncare activities,

not elsewhere specified 1,849 110.5 2,043

Total 21,746 22,349

SOURCE: JWK International Incorporated: Evaluation of Project SOAR

(Supply. OuIL--ut. and Requirements). Draft report. DHEVV Contract No. (H RA) 232-78-01 40. 1979.
each activity. The result then is of limited usefulness for child health care. The GMENAC approach represents a major effort to base manpower

requirements on child health care needs. Their methcidology has been well described by Mince of the Office of Technology Assessment (OTA): In the GMENAC model, population-based estimates of morbidity

(biological needs) are adjusted to determine the proportion of persons with a given morbidity who are in need of physician

intervention. In addition the quantity and type of preventive services appropriate for certain population subgroups are normatively

estimated. Further, the model takes into account other uses such as

insurance, physical examinations and visits by the 'worried well.' The result is what GMENAC terms an 'adjusted-needs' model which

is used in conjunction with U.S. Census population projections to

estimate the need for physician care in 1990 (55). The total health care need calculated for 1990 for children less than 17

years of age was divided among pediatricians (53.5 percent), FP-GP's

(252 percent), nonphysician prat-Aitioners (15 percent), general internists

(3.7 percent), and emergency medicine specialists (2.6 percent), assuming

that about 28 percent of child care will be provided by FP-GP's (56). Delphi panels were used to project delegation and productivity as well as

to determine the patterns of care of pediatric subspecialists. The GMENAC found that approximately 36,400 general and subspecialty pediatricians (excluding residents) would be needed to meet 1990

requirements, an increase of some 60 percent over their estimate of the

1978 supply of 'x,964. Although the GMENAC calculations call for a substantial growth in

the number of pediatricians and other child heolth physicians, the specific child health needs identified by the GMENAC methodology do not appear to justify such an increase. Analysis of tlie GMENAC figures

shows that fom-specific items dominate the calculation: Annual checkups for children to age 16 An extremely high rate of visits for "influenza" A marked increase in the number of visits for acute and chronic

bronchitis

An increase in the pediatric share of child health care Expansion of the number of physicians based on these 4-- Ur areas is highly questionable, as discussed elsewhere by Budetti (57). In sum. supply projections foresee a rapid expansion, even a doubting, of pediatricians between 1975 and 1990, while requirements estimates vary by well over 50 percent. The precise number of pediatricians required

cannot be determined, but it appears very likely that an oversupply will shortly be at hand. Although an oversupply of pediatricians appears likely, it may not be wise for a number of reasons to concentrate on efforts to reduce the

number of medical graduates in the United States who will become pediatricians. First, requirements and supply estimates are not fully

reliable and should not be used alone as a basis for policymakin' g in the

face of evidence of present unmet needs. Second, a substantial effort on

the part of Federal officials and medical educators was required to bring

729 726
about the recent growth in medical school enrollments. It is not at all clear

that efforts to reverse this trend could be successful in the short term.

Finally, the emphasis on primary care is still emerging and has yet to

assume a dominant role in undergraduate medical education. Slowing the movement of young physicians into pediatrics might result in larger numbers of specialists in nonprimary care fields. Rather, it seems more

fruitful to focus future efforts on ensuring that the new pediatricians will be appropriately trained and motivated to meet present and future unmet child health needs. The implications for training are discussed in the next

section.

Future Direction of Pediatric Training

The data on child health clearly suggest the need to refocus undergradu- ate medical curricula and pediatric residency training so that child health

physicians not only acquire skills for addressing complex disease processes but also gain a firm foundation in the routine problems of infancy and

childhood, in all aspects of child growth and development, and in genetic, family, environmental, and social influences on the health of children. General pediatric training should encompass both the routine organic

illnesses and problems and the psychological and social aspects of health. This emphasis on primary care in general pediatrics need not and

should not be at the expense of adequate subspecialty experience and

personnel. The GMENAC has forecast a need to expand the number of pediatric subspecialists over the next decade (56). This projection is a panel consensus based upon admittedly limited baseline data and is clearly in need of further analysis. Its estimate may well be accurate for some subspecialties (such as gastroenterology) and not for others (such as

cardiology), or it may be correct or incorrect across the board. Even if the need is substantial for a larger number of subspecialists, however, the needs can be met largely at the fellowship level. Undergraduate and

residency training in pediatrics should emphasize the general training, pub!ic health awareness, and communication skills required for most child health needs_ With the rapid expansion of pediatricians over the coming decade, there will be no need to stress subspecialty experiences and

program development at the medical student or resident level to guarantee adequate numbers of pediatricians in most of the subspecialties_ Rather, the need is clearly to develop general pediatric experience to ensure that

there will not be an excessive oversupply of subspecialis. ts. These findings are in keeping with the conclusions of the recent report of the Task Force on Pediatric Education (58). The task force stressed that medical education for primary care physicians be further developed_ In particular, its recent report included recommendations that pediatric

experiences should emphasize human growth and development in their

relationship to health and disease and increased emphasis on the biosocial aspects of pediatrics and adolescent health (58). There are major bathers to accomplishing these objectives but some progress has been made. Medical schools have a difficult time financing

clinical training in general care. General primary care services are poorly

reimbursed relative to inpatient subspecialty services, because a higher

730 7')
proportion of such services are for ambulatory care, which is usually

reimbursed at relatively low rates and which infrequently requires hospitalization. The Robert Wood Johnson Foundation has recognized the need for a

shift in the emphasis of pediatric training and research and is supporting

academic development programs in general pediatrics at a limited number of medical schools. The Health Resources Administration also sponsored

a grant program for a number of years to fund general pediatrics and

internal medicine training programs. These programs are intended to

improve teaching and research in emerging areas of general pediatrics and

to encourage the development of new systems of financing. If they prove

successful, their example could be generalized to the majority of child care

training programs.

Family PhysiciansGeneral Practitioners

Supply and Distribution

A clear strength of FP-GP's is their ability and willingness to practice in

lower population areas as compared with either pediatricians or internists. More than half of all family practice graduates in the first years of FP

training programs settled in towns with under 25,000 populations, and

that trend has persisted through recent years (59). In fact, nearly one-third

of recent family practice graduates are moving to areas that are more than

25 miles from medium-sized cities. As noted by Frey in a recent editorial, This may be in part due to the notable lack of success of the pediatrician/internist model of primary care to be able to meet the dual needs of coverage and economic viability in small towns. It is easy for three family physicians to provide coverage, hence time off, and to make a living, while any combination of two internists and a pediatrician or the reverse provides neither coverage nor a comfort- able living (60). The distribution of family physicians and general practitioners is in marked contrast to that of pediatricians, who are largely concentrated in metropolitan areas (table 8). Since more than one-fourth of the U.S. population still resides in nonmetropolitan areas, the implication is clear

that family physicians and general practitioners will be the main source of physician care for children in less populated areas unless current residence patterns of pediatricians change significantly. The supply of family physicians and general practitioners is now

beginning to increase. For a number of years the disappearance of general practitioners was not offset by the rate of training of family physicians. Between 1963 and 1975 the total number of FP-GP's fell from 34.4 per 100,000 population to 25.0 (61). In contrast, GMENAC now projects a

large increase in FP-GP's between 1978 and 1990 (56), sufficient to return

the figure to 34.5 per 100,000 population. The FP-GP's now provide over 30 percent of medical_ care to children

under age 21, but their share declined in recent years as their numbers fell (4, 5). The FP-GP share of child health v2-its may well rise as the supply of

731
TABLE S. Estinnoted Percentage and Number of Physicians

in Each County Sam by Specialty, 1977

County Deenography al-S- Papule don) Pediatrics

Faintly Physicians

General

Practice

Estimated percentage Nonmetropolitan (27) 12 28.9 34.0

Medropolitan (73)

Population 50.000-499.999 19.4 24.3 29.1

500,000-999,999 15.7 11.7 9.6

1,000,000 + 52.9 35.1 27.3

Nonmetropolitan Estimated number

(57.802) 2.349 2,654 13.750

Metropolitan

(158,549)

Population: 50,000-49.999 3.378 2,233 11,783

500,000-999,999 3,064 1.073 3.875

1.000,000 10.328 3,219 11.046

SOURCES: Mendenhall R. C.: Pediatrics, Family Practice and General Practice Study Reports. University of Southern California, Division of Research in Medical Education, 1978; U.S. Bureau of the Census: Statistical

Abstract of the United States, 1979, Table 17.

FP-GP's increases. One of the most important determinants of the

proportion of early childhood visits in an FP-GP practice may be the

availability of obstetric services (62). Because many of the new FP-GP's

will be young family physicians who tend to see a higher proportion of

children than older general practitioners (62, 63), the division of child care

among the specialties may well change again.

Training and Appropriate Use

Because of their focus on general medical care, many family practice medical programs already address the issues raised with regard

improved pediatric training. Family practice physicians generally spend 6

months of their 3 years of residency on formal pediatric services. In

addition, increasing portions of the entire training period are spent in

continuity clinics that include children. This exposes the FP residents to

the developmental processes of individual patients and is actually a large

part of their overall pediatric experience. Family practice residency

programs are also intended to include an extensive behavioral comporent. Finally, the obstetric and gynecology training that family practice

residents have, as well as much of their training in adult medicine,

provides them with the skills necessary for the health care needs of older

adolescents.

Discussions of child hmxith rranpower tend to equate pediatricians and

family physicians. There are differences, however, that are reflected in

present patterns of care. Pediatricians clearly have more extensive training

in the complex medical problems of infancy and early childhood and can

732

731
provide secondary care for a wide spectrum of disorders. There are at least two areas in which FP-GP's have advantages over pediatricians, however. The first is the geographic flexibility discussed above. Based upon the health needs and utilization patterns of children, it also appears that FP- OP's presently are better suited to handle the problems of older adolescents, particularly those relating to family planning and prenatal care, than many pediatricians. The number one reason for office visits among those 15-1 years old is routine pregnancy examination, account- ing for over 10 percent of visits in that age group (table 3). Gynecological exams, vaginal discharge, menstrual disorders, and family planning

services account for another 7 percent Presently, most general pediatri- cians,. unlike FP-GP's or adolescent medicine specialists, are not appropri- ately trained for this significant aspect of medical care for young adults. In

addition, typical pediatric offices are probably not the most suitable place

for young people to ask questions about contraception. The distribution of child health visits among specialists by age of child

reflects the relative advantages of FP-GP's for older children_ The FP- GP's see more than nine times as many youths aged 15-21 years than are

seen by pediatricians (4).

Nurse Practitioners and Other New Professionals5

Summary

Programs to train nurse practitioners and other new health care providers have been growing rapidly in recent years. Between 1980 and

1990, the number of midlevel practitioners will more than double and total

56,000 by 1990. The development of these new professions was encour- aged for three general reasons. First, it was hoped that they might help

reduce the costs of medical care. Although some savings result when new professionals are used, the total costs of care to the patient apparently

often are not reduced (64). Second, it was widely believed that they were

well suited to provide psychosocial and preventive care that physicians were not always providing. Depending upon the practice setting in which

they are employed, new professionals do indeed offer such important but

traditionally ncglectc services (65). Finally, it has been asserted that these professionals are competent and willing to assume primary responsibility

for health services in rural and underserved areas. This attribute also

appears to have been borne out in recent years (66). These favorable characteristics of nurse practitioners and other new

providers may not guarantee their professional viability in the future, however. Rapid expansion of the number of physicians expected in the next decade may lead more physicians to practice in undesirable or

otherwise underserved areas. Moreover, pressure is increasing to expand

the psychosocial, behavioral, and public health training of pediatricians and family practice residents. A parallel development is the movement to

For a detailed discussion of nurse practitioners and other -new professionals,- see Gloria Ruby and Katherine B. Nuckolls in this volume.

733
provide adequate insurance reimbursement for such services. These

combined factors could bring into serious question the prospects for

future employment of new health professionals.

Costs and Productivity

There has been a great deal of interest in whether the new professionals

increase physician productivity, reduce overall costs of care, and improve

the quality and appropriateness of care. None of these questions is easy to

answer because the impact of the new professionals is determined by the

way individual physicians structure their practices. The practitioner may

be used to expedite physician services, to provide services previously not

offered, or to enable the physician to spend more time with patients

requiring special skills. Fundamentally, the practitioner provides the

physician with new options. In general, the use of new professionals tends to increase access and

quality of care, but may not lower short-term health care costs or reduce

costs to the consumer. The Congressional Budget Office concluded that

new professionals can improve the cost effectiveness of mec .cal practice

because of their relatively lower salaries (67). Productivity is greatest when

each patient is given an appointment with either the physician or the new

professional and the physician participates only at the request of the

practitioner. Although savings from increased productivity are not

necessarily reflected in patient charges, some overall savings may result

from the great difference in educational expenses. On the average,

physicians are at least five to seven times more costly to train than nurse

practitioners. The real social benefit of using the new practitioners may well be the

increased breadth of care that they can provide by addressing preventive

and psychosocial aspects of care that could affect long-term health

outcomes. There is considerable evidence that partnerships between

physicians and nurse practitioners provide more comprehensive care for

children than either of them working alone (68). This complementarity,

and not simply reduced costs, may be the most important benefit if nurse

practitioners and physicians practice together to a significant degree in the

future_

Psychcaocial and Preventive Care

As one model for the more effective integration of the psychosocial,

preventive, and family-related aspects of care with more traditional

medicine, the close collaboration of physicians with the new health

professionals, among them nurse practitioners, shows great promise.

Many aspects of preventive care and community health and other

components of primary care are major components of nursing. Today the

counseling and education services required for preventive care require

training in psychology and other social sciences that are already a part of

nursing curricula and experience. Moreover, the kinds of services

associated with preventive care, health maintenance, and patient counsel734
ing can be tinxe-consuming and inadequately reimbursed under current health insurance schemes. Physicians often are reluctant to provide such

services partly because of traditional physician training and partly

because of the lack of insurance reimbursement. Studies have shown that

nurses trained to provide such services can free the physician from much

of this responsibility and do so in a cost-effective manner (67). New practitioners can also perform the health maintenance services and

case management of chronically ill or handicapped children. The needs of such children are complex and may not adequately be met by the current health delivery system. The multiple needs of an individual patient may

require the services of a variety of medical specialists, but communication

among these specialists may be inadequate. It has been demonstrated that the specialist nurse practitioner is qualified and well suited to coordinate

services of all kinds for the handicapped child either in or out of a hospital

(650-

Underserved Areas

Nurse practitioners now account for more than half of all midlevel professionals and are more hIcely than physician's assistants to work with

children (67). If current trends continue, nurse practitioners and nurse midwives will probably be the dominant new maternal and child health professionals in the future. A study published in 1978 reported that 75

percent of nurse practitioners were in primary care and more than onethird worked in the inner city. About 75 percent of the nurse midwives were in institutional settings and almost 50 percent in hospitals. The 50 percent who work in large cities are working in hospitals, health maintenance organizations, or private practices, and those in smaller cities or towns of less than 200,000 are working in public health departments, the military, or private practices. Evidence suggests that nurse practition- ers improve access to high quality medical care for residents of communities with relatively few physicians. At present, policymakers are ambivalent about how aggressively to

support the training and use of the new professionals for improving care in

areas with limited health care resources. Given the expanding supply of physicians and concerns about cost, some of the earlier incentives to

encourage the training of new professionals have dissipated. Moreover, there are a number of unresolved issues that are particularly important in

determining the potential role of new professionals in meeting the needs of underserved populations_ A deep- routed controversy remains, which must be resolved, about the degree of physician supervision required by the new

professionals in such areas as the prescribing of drugs. Whether and at what level to pay new professionals directly for their services remains

substantially unresolved, although some public and private direct reim- bursement does exist. Another question is whether, in an era when team

practice is being encouraged, the further development of another form of solo practice should be encounaged. At a minimum, it appears that the key

role traditionally played by nurses to complement and supplement physician services in underserved rural areas will continue.

735 gel
Psychologists and Educational Specialists

The role of psychologists, educational specialists, and others trained in

behavioral sciences and learning disabilities is important both in terms of

ascertaining the degree of unmet needs among youth and the extent to

which physicians and new practitioners will be required to deal with

behavioral problems and learning disabilities. As noted previously, the

data show that only a small minority of medical care is presently devoted

to youths with behavioral and learning problems. Although pediatricians

and other primary care providers report a lack of training in these areas

(58), the extent to which other providers are meeting these needs is a

major factor in determining how much medical training and practice

should be focused on behavioral and learning problems. In a team

concept of medical practice, the services provided by psychologists and

educational specialists are a basic part of meeting child health care needs.

In 1978, there were approximately 60,000 Ph.D.-level psychologists

70).6' 7 'These include psychologists in three categories: school psychologists, clinical psychologists, and health or behavioral psychologists. Only

25,510. or 40 percent, are certified and licensed psychologists who provide

direct patient care services. School psychologists include approximately

3,000 persons at the Ph.D. level and 20,000 at the Masters degree level .6

Health or behavioral psychology, a relatively new and rapidly growing

field, increased from 1,000 in 1979 to 2,000 Ph.D.-level psychologists in

1980.

Federal legislation in that Education for All Handicapped Children Act,

Public Law 94-142, requiring all public schools to provide education to

handicapped children, has stimulated a substantial increase in the number

of psychologists dealing with child problems. To meet the requirements of

the legislation, the number of school psychologists will have to be doubled

(71). Health or behavioral psychologists are estimated to increase by

another 1,000 in 1981, bringing the number to 3,000. Approximately onehalf of these psychologists are in pediatrics. Some are currently in

partnership or group practice with pediatricians_

Educational specialistsboth regular classroom teachers as well as

specialized staff personsprovide special instruction or assistance to

pupils with learning disabilities, emotional disturbances, and mental

retardation. The results of a nationwide public school survey show that

learning disabilities are served by an estimated 123,000 professionals,

approximately one-third of whom are specialists including school psychologists, counselors, reading and language specialists, speech and hearing

specialists, and others. For the emotionally disturbed, there were approximately 74,100 professionals (72). An estimated 102,500 professionals

provided instruction for the mentally retarded (72).

The distribution of services provided for these three mental health

problems varies. The mentally retarded are offered services in the majority

6Personal communication. G. R. VandenBos American Psychological Association. August 1980.

7This. figure represents an estimate bused on 40 percent of Ph.D. psychologists being health service

providers (certified and licensed)-25,510:40 equals 60.000 Ph.D. psychologists.

736
of the schools. Instruction and assistance for learning disabilities are found in Less than half of the public schools (73). In addition, an even

greater number of educational specialists provide services to the large group of physically handicapped pupils.

In summary, psychologists and educational specialists play a key role in child health care, particularly in areas of =met need. Further study is needed not only on the need for an increased supply of these professionals but also on their locations and patterns of practice.

CONCLUSION: STRATEGIES FOR IMPROVING amp HEALTH PERSONNEL TRAINING,

DISTRIBUTION, AND ORGANIZATION

Health Care Needs of Cadres

Strategies for meeting the health care needs of children in the future

should not focus on increasing the supply of professionaLs. Rather, the new strategies should be designed to serve the needs that arc presently not being met. These include certain population groups as well as specific health conditions that are inadequately addressed- Those with continuing need for the entire spectrum of health services include children in rural

and central urban areas, the poor, blacks, and adolescents. The needs of rural children may well be met if present trends and

programs continue. Family physicians, general practitioners, and nurse

practitioners have all demonstrated a willingness to provide care in many

rural areas and their financial viability in such areas. In the remaining

underserved areas, the National Health Service Corps (NHSC) should

provide the necessary care. In addition, as their supply greatly increases, pediatricians may develop innovative practice arrangements that could

serve the needs of children in some rural areas.

Meeting the needs of the underserved children in central cities may be even more complex than meeting the needs of rural children. A major effort to increase access to care in central urban areas has been underway

for some time. Continued expansion of Medicaid coverage and payment

levels and programs to increase the number of blacks and other minorities

in medical schools could help address shortages in these areas. Finally, the NHSC can also be expected to play a prominent role in addressing these needs.

Adolescents present a complex body of unmet child health care needs. To address adolescent needs for care with regard to sexuality and filially

planning, family physicians-general practitioners, and nurse practitioners cor tinue to play a prominent role. In addition, pediatric education

should be expanded to include training in childhood and adolescent sexuality and family planning so that pediatricians can provide the

services necessary to deal with these aspects ofcare.

The problems associated with alcohol and drug abuse among youths will necessitate increasing the number of programs of a variety of health

and social agencies, the schools, and other institutions that deal with

736 737
adolescents. Moreover, physicians and other health care professionals will

need more extensive training in both the preventive and medical aspects of

reducing alcohol and drug abuse, specifically among the youth.

There are many unmet mental health problems in children, particularly

including a high incidence of learning, language, and behavioral disorders.

These require several different approaches. Psychologists and others must

be available in large numbers in the schools. Medical care professionals,

particularly pediatricians and family practitioners, must have more

extensive training in the diagnosis and management of such problems and

also in dealing with the extensive network of health care providers

necessary to adequately correct many of these disorders.

In addition to children with mental health problems, children with other

chronic disabilities constitute a large population that needs more extensive

attention from the health care system. Again, the need is for additional

training in the problems of chronically disabled and handicapped children

for all health care personnel, along with the development of the team

concept of social and medical services necessary to address these serious

problems.

The Role of New Health Care Professionals

Although the number of nurse practitioners has been growing in the

past decade and pediatricians have led the way in incorporating them into

medical practices, there have been obstacles to the full integration of these

professionals into the delivery of primary care. Some barriers such as

those related to patient acceptance and State licensure restrictions have

eased although not disappeared. Others, including reimbursement and

physician reluctance, remain. Now, given the greatly increased number of

physicians resulting from more than a decade of policies to expand

medical school enrollments, physician resistance to delegating responsibilities for patient care to other practitioners may increase rather than

diminish. Only in settings with fixed budgets, such as health maintenance

organ nations, will there be the incentive to hire health professionals who

can provide particular services in the most cost-effective manner.

Continuing employment opportunitiesfor nurse practitioners may become

scarce. In addition to issues of cost containment and despite the increased

number of pediatricians, a further and most important reason for

continuing to support the training of new health professionals is related to

the type of education and training received by physicians. Medical

education, residency programs, and health service reimbursement systems

may continue to establish patterns that serve as barriers to meeting many

child health needs. If so. nurse practitioners and other health care

professionals should be available to provide the services that they do well,

i.e., primary care in underserved rural and central metropolitan areas and

psychosocial and preventive services of general medical care.

738

7 3
To realize the potential of the new professionals in the face of expanded physician supply policymakers, physicians and communities would have to create innovative ways to use these individuals. For example, States

that limit the practice of nurse practitioners, physician's assistants, and other new health professionals might adopt laws that allow them to practice in underserved areas under physician supervision. To increase access to health care through new health professionals will require

adequate funding of training programs and the placing of graduates in undcrserved areas, expanding the number of new practitioners in the NHSC, and extending financial reimbursement to cover the costs of their

services.

Team Modes of Practice in Primary Care

Implicit in the notion of the primary care unit is the team made up of physicians, nurses, dentists, nutritionists, counselors, social workers, and others. It is unrealistic to assume that physicians can have adequate

training and experience in all of the fields that bear upon the personal health and behavior of youths. Likewise, it is unwise to encourage patterns of practice that isolate general pediatricians, family physicians, obstetri- cians, and others from physicians and other health professionals whose

expertise complements their own. Numerous attempts have been made to define the desired attributes ofa primary care team. Teamwork in primary care can have many variations. Single, large organized settings may include a broad array of healthrelated professionals, offering the conveniences of collaboration and

proximity to patients. On the other hand, the office-based physician, even

in solo practice, may greatly enhance the quality of care by being ct-_-4.1y

linked to various backup and support services. The team concept yak l

therefore be regarded principally as an attitude that should be

established in training rather than as requiring a particular orpini7-ational construct for the provision of services. Among pediatricians, there appears to be an implied recognition of the advantages of teamwork in the present trend to avoid solo practice and

instead to work in small groups. The emerging private practice pattern in pediatrics is the group practice. Although the reason for such an

arrangement might be financial or might be to gain the advantages of group consultation, the pediatricians in such groups are often working in

conjunction with pediatric nurse practitioners or associates and delegating

certain patient care activities (67). Pediatricians usually have close links to

teaching centers, which further improve patient access to the variety of services offered in more complex medical care facilities. Such group practice and pediatric regionalization should be endorsed, along with

other modes of organized practice, because they strengthen the quality of

care. The major limitation of such arrangements is their limited financial viability in remote rural areas. This suggests that such group practices

739
should evolve in middle-sized towns either as backup centers for family

practitioners and other health care providers or as central units of rural

satellite clinics, which are staffed by the centers on a rotating basis.

Community Health Care

The changing health needs of both children and adults have led to a call

for a second public health revolution in which preventive health and

primary care would replace the present disease-oriented system of

excessive specialization and high technology. The arguments supporting

this reorientation have been based not only on epidemiological evidence

but also on access, quality of care, and economic factors (12).

Children are now experiencing more behavioral problems without a

clear somatic basis. Many of these are related to poor physical or social

environments, the changing role and structure of the family, and other

factors related to health but not strictly to medicine. To address these

needs, increasing consideration is being given to ideas such as team modes

of health care involving nurse practitioners, psychologists, and other

professionals; the long-term effects of childhood illness on subsequent

health; the value of childhood indicators of risk and serious adult illness;

and the promotion of nutrition and exercise as a means to prevent future

health problems. In a comprehensive approach, these and other concerns

related to the "'new pediatrics" and community health would be

incorporated into the selection and training of health care workers as well

as into practice and reimbursement innovations in health ca.-e.

The implications of the community health approach go beyond changes

in the training of physicians. Additional health education programs would

be implemented aimed at different youth groups and specific problem

areas such as drinking and smoking through the use of media, schools,

health care settings, religious groups, and other community organization:.

For example, a community health approach to alcohol abuse among

young people was developed in Somerville, Massachusetts. The CASPAR

alcohol education program began in 1972 with a school community

steering committee to identify youths' problems related to alcohol abuse.

To confront these needs, the CASPAR program incorporated training for

peers and for teachers, offered an alcohol education curriculum for grades

3-12, and provided an outreach effort for youth problem drinkers and

children of alcoholic parents.

National Health Service Corps

Just as there will be a significant increase in primary care physicians in

the 1980's, so there will be a major increase in numbers of NHSC

members (the majority being physicians) in various rural and central city

primary care settings. At present, a total of 971 physicians are deployed by

NHSC, 534 FP -GP's, including 160 pediatricians, and 18 obste

740
tricians.s These are complemented by 257 nurse practitioners and

nurse midwives. By 1985, total numbers of primary care physicians and

new professionals will increase substantially. Until now, potential place- ments for NHSC personnel have far exceeded numbers of Corps participants. As the character of the program changes from a small

volunteer program to a vastly expanded service-connected scholarship

program, issues of appropriate site designation and placement become more complex. Support for NHSC personnel by other physicians is crucial both during their medical training and once they are in practice. Adequate

support will require that pediatricians and other primary care physicians provide NHSC personnel with appropriate preparation for their Corps practice and participate fully in their placement and backup.

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(65) Glen, 3. K. and 3. Goldman- -Strategies for Productivity with Physician Extenders." Western

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(66) Saha. H. A-. M. Zielexny. and L. Kinyou. Longitudinal Study of Nurse Pnactitioners: Phase L

Department of Health Education and Welfare, Washington,. D.C., DHEW Publication Number

76-43, March 1976.

(67) Congress of the United States, Congressional Budget Office. Physician Estendvs: Their Current

and Future Role in Medical Caro Delivery. Washington. D.C.: U.S . Government Printing Office,

April 1979.

(611) Ruby, G. New Health Professionals in Chad and Maternal Health:" In this report.

(69) Nuckolls. K. B. 'Backgronzid Paper on Nursing.- In this report.

(70) Milt, D. II_ A. I." 7..:7_41reer. and G. R. VandcnBos 'Me National Register Survey: The First

Comprehensive Study on Ail Licensed/Certified Psychologists.- In Psychology and National

Health insurance. A Sourcebook C. A. Ken' ler. N. A. Cummings, C. R. VandenBos, eds. American

Psychological Association. Washington. 1979.

(71) VandenBos, G. A., IL S. Nelson, 3. Stapp, S. Olmedo, D. Coates. and W. Batcheoor. -A Service

Need-Based Approach to the Projection of Mental Health Petsourei Needs." An American

Psychological Association report to the National Institute of Mental Health (Memo). September 27.

1979

(72) Metz. A. S. and H. L. Cramer. Professional Star' for the Handicapped in Local Public Schools. p. 2-

US. Department of Health, Education and Welfare, Washington, D.C.- (OE) 74-214. Spring 1970.

(73) Metz, A. S. and H. L Cramer. Professional Staff for the Handicapped in Local Public Schools, p.

15. U.S. Department of Health. Education and Welfare. Washington. D.C. (OE) 74-214. Spring

1970

744
NEW HEALTH PROFESSIONALS IN

CEEILD AND MATERNAL HEALTH

by GLORIA RUBY. M.A.

INTRODUCTION

If the health needs of children and women of childbearing age are to be met effectively, it is essential to have appropriate manpower in sufficient supply and in convenient locations. A variety of child and maternal health services, including medical, nursing, and social services are crucial in the promotion of child health; many of these services have traditionally been the responsibility of physicians, but can be provided by alternate manpower. Recently, the number of other health practitioners has increased. This group includes formally trained nurse midwives, nurse practitioners (particularly in pediatric nurse and school health) and physicians' assistants (especially child health associates). Considerable evidence demonstrates that these "new health professionals" are effective in providing some of the maternal and child health services usually considered to be the province of the physician. Although professional nurse midwifery was introduced in this country in 1925, (I) it has probably undergone more change since 1972 than during any other period

of its history, and so it will be ;.ncluded in this rubric.'

The complex issue of appropriate manpower is especially timely now

because of new health manpower legislation and the recurring possibility of the enactment of national hy's-th insurance. The debate is confounded by the current intense concern, both governmental and private, with the

escalating costs of health care. The quality of care and the accessibility of suitable services to children and women of childbearing age may be

tempered by budgetary considerations. A comprehensive examination ofnew health professionals who provide maternal and child health services is needed in order to determine whether

they are effective. For the purposes of this paper it is presz.-=.0%.1 that the

'In this paper nurse midwives are defined as licensed nurses who have undergone a professional midwifery program: nurse practitioners are defined as graduates of an approved continuing or graduate

education program to train registered nurses to become nurse practitioners; and physicians' assistants are either graduates of approved physicians' assistant programs or other persons certified as physicians' assists ar- The lay midwife, who represents another nonprofessional source of maternal care. not be discusse.1* wrifl

745
new health professional is working in conjunction with a physician_ The

critical issue of independent practice would require a philosophical

analysis of the place of the physician in American medicine.

HISTORICAL PERSPECTIVE

The importance of an adequate supply of practitioners to increase the

availability of health care for children and women of c -'dbearing age

received keen public and private attention in the 960's. Despite

tremendous achievements in scientific research and the application of new

discoveries to medicine, inadequate medical care and unmet health needs

existed in some areas and among some populaticras. For example,

profound disparities existed in infant mortality rates between the United

States and other industrial countries, among States, and between the white

and non white populations of this country. It was estimated that between

45,000 and 50,000 infants died in the first month of life due to the lack of

proper care (2). The Federal GOvernment perceived the cause of these deaths to be a

shortage in the supply of health professional manpowerespecially of

physicians. The number of physicians per 100,000 people had declined

from 119.8 in 1931 to 102.7 in 1958 (3). Consequently, Federal policy

supported health manpower training. In 1963 Congress enacted the

*Health Professions Education Assistance Act (4).

The problem, however, was more complex. In addition to the inadequate number of physicians and other health professionals, the changing

nature of medical practice and an increased need and demand for health

care were responsible for the shortage of manpower. Among the varied

influences on medical practice and medical care were the demand for

advanced training by physicians returning from World War II, generous

government investment in research and technclogy, and the initiation of

new specialty training programs in many hospitals. Consequently, the

focus of graduate medical education shifted to the training of medical and

surgical specialists and the number of physicians trained to provide the

majority of care for an individual or a family was thereby reduced.

Biomedical research and its application prolonged life and saved many

lives previously considered beyond assistance. As a result peoples'

estimation of the capabilities of medicine rose and the demand for

medical services increased.

Complex care increased the cost of care and promoted the use of health

insurance. For the most part health insurance covered, and still covers,

inhospital services and surgery, which encourages the provision of

specialty services. The lack of coverage for primary care services not only

raises a financial barrier to their use, but is believed to discourage

physicians from entering and remaining in primary care practice (5).

Although the emphasis on specialization produced pediatricians and

obstetricians to provide child and maternal health services, it did not

offset the decline in the number of general practitioners. Such physicians

had provided most of the care to children and women of childbearing age

746
in low income and geographically isolated populations (6). By 1965, the number of obstetricians per 10,000 total births in States with low per capita income was two-thirds of the national average; total physicians per 100,000 population and pediatricians per i 0,000 children under fifteen in States with low per capita income were about one-third lower than the

respective national ratios (7). The mounting difficulties of providing primary care led to experiments

in increasing physicians' capacities to provide patient care. One proposal was a system for training health personnel to assume some of the duties of physicians without long and expensive training periods. Although orga- nized medicine did not openly recognize the practice, individual physi- cia' ns-had informally delegated medical tasks to other health personnel for years (8). In 1965, formal training programs for two new types of health

personnel, nurse practitioners and physicians' assistants, were started. Both professions were launched in the same year under sponsorship from the private sector and were constituted to provide some services previously performed by physicians. Their training and their professional philosophies, however, differ markedly. Nurse practitioners are registered nurses whO are trained to perform some medical functions in addition to their traditional nursing functions. Physicians' assistants enter training programs with or without previous experience in health care and are

trained to assist, or substitute for, physicians. The first training program for nurse practitioners was founded by Dr. Henry Silver at the University of Colorado, to prepare "nurses with

baccalaureate or master's degrees to assume expanded roles in providing

total health care to children" (9). The 4-month pediatric nurse practitioner program, a joint effort of the Department of Pediatrics of the School of Medicate and the School of Nursing, is intended to increase the

availability of child health care. The focus of the training is on well baby

care, parent education, and prevention (10). On the other hand, the physicians' assistant concept, which was instutionalized by Dr. Stead at Duke University that same year, has its

roots in the medical profession. The program was started after attempts to establish a master's level nurse practitioner program within the Depart- ment of Medicine at Duke failed. The accrediting agency for nursing

programs, the National League for Nursing, had denied accreditation on

the basis that delegating medical tasks to nurses was inappropriate (11). Dr. Stead enrolled ex-military corpsmen in the country's first training

class for physicians' assistants. The intent of the program was to increase

the time available to physicians by training and paying "career-dedicated men who could become their (physician) assistants and who would in

effect extend the doctor's arms and legs to provide care for more people"

(12). The initial emphasis on performing tertiary tasks under the close

supervision of a physician in hospitals and clinics (13) has varied over

time. Most training programs now focus on the delivery of primary care. The first program to train physicians' assistants for the specific provision of pediatric services began in 1968 at the University of

Colorado. The 3-year program requires 2 years of college preparation and

747
graduates a Child Health Associate who can provide a wide range of

diagnostic. therapeutic, and preventive services for children in collaboration with a physician (14). While new programs for health practitioners evolved, attention was

given nurse midwives. For example, the Macy Foundation held conferences in 1956 and 1957 to consider their future role in the United States

(15). Unlike nurse practitioners and physicians' assistants, nurse midwives

practice a discipline whose historic origin is independent of medicine.

Professional nurse midwifery was established around the turn of the

century in the United States with the founding of the Frontier Nursing

Service. Shortly thereafter, the Maternity Center Association was established by the Rockefeller Foundation, first professional school for training

nurse midwives in this country. The profession grew slowly; by 1966 only

six programs offered certificates ofproficiency in nurse midwifery and five

programs granted both certificate and masters' in nursing. Only a few

legislatures recognized the profession and defined the educational requirements and the role of the nurse midwife in practice (16).

The number of training programs for nurse practitioners and physicians' assistants, as well as nurse midwifery services and educational

programs, increased somewhat in the late 1960's and early 1970's with

support from the Federal government, private foundations, and institutions. Not until 1971, after much deliberation and debate among relevant

professional organizations, did these health professionals attain official

recognition. In 1971, the American College of Obstetricians and Gynecologists and the Nurses Association of the American College of Nurse

Midwives declared that in medically directed teams "qualified nurse

midwives may assume responsibility for the complete care and management of uncomplicated maternity patients" (17). A few years earlier (18),

the American Nurses' Association had issued its own statement which

recognized nurse midwifery as an appropriate extended role in the nursing

profession. Physicians' assistants also received endorsement in 1971 from

the American Medical Association. Its House of Delegates adopted "the

Essentials of an Approved Educational Program for the Assistant to the

Primary Care Physiciaik which defined a physicians' assistant as "a

skilled person qualified by academic and practical on-the-job training to

provide services under the supervision and direction of a licensed

physician who is responsible for that assistant" (19). Agreement was

finally reached in 1971, on "Guidelines on Short-Term Continuing

Education Programs for Pediatric Nurse Associates" a joint effort of the

American Nurses' Association and the American Academy of Pediatrics.

These guidelines ackno zed that the nurse's responsibilities should be

expanded to include some treatment traditionally performed by physicians in order to delive.r child health care more efficiently (20).

A major spurt in the growth and development of these professions

occurred after 1972, partially as a result of rising Federal interest. The

executive and legislative branches of the Government realized that

improved access to health manpower could not be attained solely by

educating more physicians. In his Annual Health Message of 1971,

President Nixon noted the value of nurse practitioners and physicians'

748
assistants in increasing the availability of primary care manpower. That same year, Eliott Richardson, then Secretary of the Depar' -nertt of Health, Education, and Welfare (DHEW), called for increased utilization of nurse midwives and other nurse practitioners in order to achieve more effective delivery of health care (21). In addition to authorizing funds for training more health professionals, the Nurse Training Act of 1971, the Compre- hensive Health Manpower Training Act of 1971, and the Emergency Health Personnel Act Amendments of 1972 included provisions for

imprc-ved geographic distribution of primary care and specialized health manpower (22). These provisions included funds for training nurse midwives, other nurse practitioners, and physicians' assistants. The

linkage between the development of the new health professions and the distribution of physicians (and to some extent nurses) was forged in these pieces of legislation. The relationship is strengthened by more recent pieces of legislation in which current Federal health manpower policies are articulated. The complex issues of specialty and geographic maldistribution, which

received relatively minor attention in the 1971 Acts, became more prominent in the Nurse Training Act of 1975 and the Health Professi4:ns Education Assistance Act of 1976 (HPEA) (23). Federal policy, which had previously concentrated on providing equal access to health services by

training more health professionals, had not achieved Congressional objectives, particularly in the case of physicians. Indeed, the 1976 HPEA

Act declares that "there is no longer an insufficient number of physicians and surgeons in the United States," and includes provisions to compen- sate for and rationalize their uneven distribution. The Act continues

previous initiatives with respect to nurse practitioners and physicians' assistants. Another factor in this decision was concern about the rising

costs of health care and the potential role of new health professionals in moderating the rate of price increases. The Health Professions Educational Assistance Act of 1976 (24) authorizes grants and contracts for physicians' assistant training programs and, as amended by the Health Services Extension Act of 1977 (25), for

the first time directly addresses the need for new health professionals in

underserved areas. It authorizes training for nurses who are residents of a health manpower shortage area and who promise to practice in such areas when they become nurse practitioners. It also provides special consider- ation to practitioners who will train in Health Manpower Shortage Areas. The Nurse Training Act of 1975 (26) established new authorities for project grants and contracts for training programs for nurse practitioner programs. This Act can be interpreted as both a response to the Congressional objective to fill unmet needs for primary care and a

response within the profession to its growing numbers. Utilization of new health professionals in health manpower shortage

areas is further advanced in the Rural Health Clinics Service Act of 1977, which liberalizes the payment practices of the Medicare and Medicaid

programs for health services, including some child and maternal health

services, furnished by new health professionals in clinics that are located

in medically underserved rural areas (27).

749
CURRENT STATUS

Since their emergence as new health professionals, nurse midwives, pediatric nurse practitioners, school nurse practitioners, and child health

associates have become acknowledged contributors to the health of children and women of childbearing age. With a view to considering

policy issues. this section presents data on the current supply, distribution, training programs. and practice patterns of these and a few other specific providers of child and maternal health. Geographic distribution of new

health professionals is determined in good part by current payment practices and State laws governing the practices of new health profession- als that tie their practice locations cle:sely to those of physicians.

Nurse Midwives

Supply

Other than medicine, the profession most often associated with the provision of maternal health services is nurse midwifery. It has grown in

numbers and progressed professionally in the United States since the early beventies. In a 1976-77 study, the American College of Nurse Midwifery

(ACNM) identified 1,723 nurse midwives in contrast with 1,256 they

identified in 1971 (28). In addition, the age composition and professional interests of the group

changed during the period. Approximately half of the participants in the 1976-77 ACNM study graduated as nurse midwives after 1969; conse- quently, the work force is younger overall. It remains predominantly

female (99 percent) and white (77 percent) (29). The number of nurse midwives seeking certification, and thereby more professional recognition, also increased. Between 175 and 200 are

currently certified annually2 with iiew graduates making up a higher proportion than ever before. The proportion u. the employed nursc midwifery work force who have entered clinical practice has also

increased. In 1976-77, 61 percent of the employed study participants were

in clinical practice compared to 41 in 1971a 49 percent increase (28). Interest in clinical practice is particularly evident among graduates of newly established programs. Although 13 percent of the study participants graduated from he programs that started after 1972, 20 percent of those in

clinical practice are graduates of such programs (30)-

Location

Nurse midwives are unevenly distributed throughout the United States. The largest proportion (about 25 percent) is in the Middle Atlantic States and many are in New York City. The next largest proportion is in the Southeastern States (31). t-or distribution of practicing nurse midwives by size of community and work setting, see table 1. The majority (75 percent) are employed in

2 private communication with the American College of Nurse Midwifery. February 1980_

750
TARE 1. US bided 1976.71 ACM Sluty Participate In Onkel Priclice bj lb of Community and Type of Organization Mb

NO They Pm*

Pod MOM by Size of Coma*

Typo Vat Opinion Nine Ibis 10* 50,000- 200,000-

ber UN 49,999 199,999 NUN 500,000 Total

Ha* 283 45.6 5 11 20 9 55 100

*Pot health agency 86 13.8 20 25 13 16 26 100

Note practice with M.D. 80 12.9 14 40 20 9 17 100

U.S. Military 51 8.9 14 29 37 6 14 100

NM maternity 'nice 47 7.6 21 19 9 7 44 100

*oily health erica 31 5.0 0 10 20 30 40 100

Prepaid health plan 21 3.4 0 0 26 5 69 100

Private NM practice 5 2.4 8 8 15 8 61 100

Otto 7 1,1 13 29 29 29 0 100

Total 621 100,0 10 19 19 11 41 100

Source: American Ccilege of Nur* MOAN, Nurse Miettidery in the United Ate : 1916-1977, Washington, D.C., 1918.

(Sane rtree rideitry propos are dasilled as num vactitioner men)
institutional settings, with hospitals employing the largest proportion (46 percent) and public health agencies employing the second largest (32). Nurse midwives are often employed by municipal and other publicly

supported hospitals and public health departments in large cities (33). A

national survey of nurse practitioner programs also found that more thar 44 percent of the graduates of the nurse midwifery programs in the survey practiced in inner cities (34). The proportion of nurse midwives practicing nurse midwifery varies widely (from 17 percent to 76 percent) among regions, with the highest proportion in the rural States of Kentucky, Tennessee, and West Virginia. Less than 7 percent of all nurse midwives in the United States are

employed in these States. Nurse midwives have contributed to maternal and child health in rural Appalachia and other rural communities, but nationwide their presence in small communities is limited.. Only 10 percent of the nurse midwives in clinical practice, as compared to 34 percent of the United States population, are in communities of less than 10,000 people

(31).

Training Programs

Of the 17 educational programs for nurse midwives reported in the 1976-77 study, 10 had been started after 1972 (30). By 1975. 14 programs were operating, of which only two, the Frontier Nursing Service School of Nurse Midwifery and the United ,testes Air Force training program, were

not under university auspices.' The two types of programs for nurse midwifery training require certification as a registered nurse for entry_ One offers a 7- to 12-month course leading to a certificate, and is open, in most cases, to nurses without a bachelor's degree; the other, which leads to a Master's degree in nursing or public health, requires a bachelor's degree

for admission. Both the number and percentage of graduates of nurse midwifery Master's programs have increased in the past few years (35). The increase in the number of educational programs and trained

individuals can, in part, be attributed to Federal financial support. Approximately two-thirds of the participants in the 1976-77 ACNM study were educated as nurse midwives with support from DHEW funds (36). By 1978, 15 of the 23 (65 percent) nurse midwife training programs were

funded by DHEW. Table 2 shows levels of funding for nurse midwife

training programs in 1976, 1977, and 1978 (37). Although curricula and programs vary widely, the basic competence

required of all nurse midwifery students includes knowledge and skills

relevant to the management of normal pregnancies (including ante-, infra-, and postpartum care), family planning and gynecological care, and knowledge and skills for the management of the normal newborn_ Additional course work includes aspects of the behavioral sciences, communication, public health, family-centered approaches, counseling,

3 Private communication with the American College of Nurse Midwifery. February 1980.

752
MOLE 2. Levels of Funding for None blidwilery Prowess*

Olumber of Funding Total Number Programs (3) Provided (4) Veer of Programs Funded by MEW by CHEW

1976 17 (1) 8 S1,260.204 1977 14 $2.186.610 1978 23 (2) 15 $2.394;519

SOIWOINE (1) Nurse michenery in the United States 1976-77 (American Colleas ce Nunes bilickgrives. Washington. D.C.: 1976). (2). (3), (4) Graduate Medical Education National Advisory Committee Ware n Report (DHEW, Wahingpon. D.C.: 1979).

patient education, continuity of care, use of community services, and

trainin' g in the recognition of health complications and deviations, as well as training in consultation and collaboration with other health profession- als and research methodology (38).

Practice Patterns

As defined by the American College of Nurse Midwifery, nurse midwifery practice is the "independent management of care of essentially normal newborns and women, antepartally, intrapartilly, postpartally, and/or gynecologically, occuring within a health-care system which provides for medical consultation, collaborative management or referral" (39). Almost all nurse midwives in clinical practice provide prenatal care; about 85 percent manage deliveries and examine the patients 4-6 weeks after delivery, and three-quarters manage the immediate postrartum care of the mother (40). The number of nurse midwives attenr;ng deliveries increased 55 percent between 1971 and 1976-77 (28). In addition to zipecific obstetrical care, nurse midwives deliver family planning services

(90 percent), normal gynecological care (78 percent), and sexual counsel- ing (68 percent) (40). The collaboration between nurse midwives and physicians is evident from the responsibilities nurse midwives assume within each general patient care area. They most often provide services needed by normal women and least often servicesinvolving complications or invasive procedures. For example, almost all nurse midwives who manage deliveries cut and repair episiotomies (a procedure used in normal childbirth practices in the United States), yet only 15 percent deliver multiple births and 12 percent breech births e.41). Although newborn care is required of nurse midwifery students, in practice it is most often limited to the period immediately following birth. Such restriction of the nurse midwife practice may result from the

institutional structure that separates pediatrics from obstetrical care, from the preference of the nurse midwives, or from a combination of the two factors. By contrast, in nurse midwifery maternity services about 65 percent of the nurse midwives take care of the newborn until discharge (41).

753 752
Other Providers of Maternal Health Services

The maternity nurse practitioner is also trained to provide maternal

health services- As of 1976 there were 90 or 8.2 percent of enrollees in

nurse practitioner programs (42). In addition to 11 nurse midwifery

programs and 14 maternity nurse practitioner programs, 41 nurse

practitioner programs prepare students to perform selected functions in

maternity care and family planning (42). Students in some adult nurse

practitioner programs, some family nurse practitioner programs, and some

pediatric nurse practitioner programs, as well as students in nurse

midwifery and maternity nurse practitioner programs, are trained to

perform physical and pelvic examinations for all maternity patients except

those with symptomatic complaints (43). Except for nurse midwifery

programs, no program prepares its graduates to assume complete

responsibility for the woman in childbirth.4 The services performed in

practice closely approximate those taught in the training programs (44).

Other types of nurse practitioner programs to train providers in

maternity care and family planning are now emerging The American

College of Obstetricians and Gynecologists has developed guidelines for a

certificate program for "obstetricgynecologic" nurse practitioners (45).

The Department of Health and Hurr.an Services (DHHS), successor to

DHEW, is now funding nurse practitioner programs in obstetrics-gynecology and women's health.' The family planning nurse practitioners are also trained to assume

clinical responsibility for family planning. In most cases, they are nurses

who have on-the-job training after a very short formal training course or

nurses who have taken a concentrated training program of 12-16 days

(46). An estimated 1,200 family planning nurse practitioners have been

trained in the last 4 years (47).

The number of physicians' assistants presently providing maternal

health services is extremely small. In 1978, of the 3,240 respondents to a

national survey of physicians' assistants, 13 percent reported

obstetrics-gynecology as their primary area of practice, 2.3 percent

reported it as their secondary area of practice and 1.4 percent reported

that their supervisory physician was an obstetrician-gynecologist.6 Physicians' assistants working with family physicians, internists, and other

physicians undoubtedly provide some maternal hea:Lh services as well.

A task profile of 258 primary care physician's assistants shows that at

least a fourth were performing some maternal health services, such as

carrying out uncomplicated deliveries, inserting IUD's, and measuring for

diaphragms with or without the presence of a physician.' Physicians'

4 Private communication with the Division ion of Nursing. Bureau of Health Manpower. Dep.-rum:ma of

Health. Education ant' Welfare. January 1980.

5 Private communications with the Division of Nursi-tg, Bureau of Health Manpower, Departm.nt of

Health. Education and Welfare. January 1980.

6 Private communication with the Association of Physician Assistants ProgramsAmerican Academy

of Physicians' Assistants. 1978. Survey. unpublished preliminary data.

7 Private communication with the Association of Physician Assistants ProgramsAmerican Academy

of Physicians' Assistants. Task Profile. unpublished data.

754.
assistants who deliver maternal health services are graduates of either primary care or surgical physicians' assistant training programs who choose to work in this area. No training programs for physicians' assistants currently specialize in obstetrics-gynecology (48), although most programs include obstetrics-gynecology in the clinical phase. No legal restrictions on the use of physicians assistants for obstetrical-gynecologi- cal care exist in those States which legally recognize physicians' assistants

(49).

Pediatric Nurse Practitioner

Supply and Location

Formal nurse practitioner training programs graduated 14,260 persons

in 1978, almost 5,000 of whom were pediatric nurse practitioners (50). Overall, graduates of pediatric nurse practitioner training programs arc

evenly distributed by region and are the largest group of nurse practition- ers in each region (51). Pediatric nurse practitioners are well represented in inner city areas. One-third of the graduates of nurse practitioner programs are located in inner cities, as are 42 percent of the graduates of pediatric nurse practitioner programs (52). Most primary care nurse practitioners (62 percent), including pediatric nurse practitioners, work in ambulatory clinical practices, particularly in

hospital-based clinics, and community-based clinics or centers; (52) the

majority of those employed in inner city areas are in hospital practices (44

percent) (53).

Trainin' g Programs

A national study of nurse practitioner training programs initiated in

1974. reported 133 eligible provams, 35 of which had been functioning in

1970 (54). More programs train pediatric nurse practitioners than any

other specialists. The 42 certificate pediatric nurse practitioner programs vary in duration from 4 to 24 months, with an average of 8 months. The 8

master's programs usually range from 13 to 24 months, averaging 16 months (55). Programs also differ as to sponsorship. All the master's programs in pediatrics are under university or college aegis; 33 of the certificate programs are similarly sponsored. The other certificate pro- grams arc connected to hospitals (6), a department of health, a

coordinated home health program, an outpatient facility and a regional medical program (56). The programs are evenly spread throughout the United States by region; more than 90 percent include practice in rural or

inner city areas, more often in the latter. A major funding source for pediatric nurse practitioner training

programs in 1979 was the Federal Government. (See table 3.) Pediatric nurse practitioner programs do not have a standard curriculum. Certificate pediatric nurse practitioner programs in general devote more time to practice skills than do master's programs. Almost 30 percent of the time spent in master's programs is devoted to research, teaching, and supervision (57).

755
TABLE 3. Typos and numbers of Nurse Practitioner Programa

Spada ily of Nurse Procitioner

Program

Number of

Training Programs

Number of

Yearly Graduates

Total

Pediatrics 31 280

Total 27 220

Certificate 21 175

Master's 6 45

School Health

Total 4 60

Certificate 4 60"

Source: Division of Nursing. eureau of Health Manpower Health Resources Administration. Department of Health. Education. and welfare:

1979 figures.

The Association of Faculties of Pediatric Nurse Associate Practioner

Programs in 1973-74 developed ducational objectives and curricula for

training programs that most programs ascribe to. It described a pediatric

nurse practitioner as having expertise in growth, development, and

physical assessment. In addition.. "as a professional with particular

competence in health maintenance and counseling, the nurse practitioner

should be expected to develop her mode ofpractice. The relationship with

physicians should be one of interdependence . .." (58). Curricula emphasize the care of the well child and the child with common childhood

problems. They include data gathering and physical assessment, interviewing and counseling, growth and development, health maintenance

(which is defined as a major function of the pediatric nurse practitioner),

and the management of common childhood problems. Although instruction in major problems such as coma, seizures, and cardiac failure is

included in the curriculum, pediatric nurse practitioners are not expected

to man...se such conditions in practice (59).

Practice Patterns

Most pediatric nurse practitioners primarily provide care for healthy

infants and children. Fewer provide care for physical illness, emotional or

mental health problems, and emergencies (60). (See table 4.) As table 4

also shows, a higher proportion of master's degree graduates than graduates of certificate programs provide care for physical illness,

emotional/mental health problems and emergencies. In addition to training, physician preference affects the activities of

pediatric nurse practitioners. A recent survey of pediatricians confirms the

results of earlier studies that physicians are interested in delegating the

care ofwell children and the management ofminor illness (61). Relatively

few physicians, even among those who employ pediatric nurse practitioners (34 percent), would delegate the physical examination of children with

chronic illness and fewer still the continuing management of children with

chronic illness(62).

756
TALE I. Pont el Fad* kurie PrEillkoire Prating 8iledsd lts of Co in Spa* Collieries of Palen* by Typo of

Nuns Pracaso Program

Co Provide ind TO of Prop

Calsplo %NW For Physical For Emollonal/

of Plank Aassensri bps NW lisith

CertiliciteN-169

Infants 75.7 40.2

Children 89.3 914

Actieecent 68.6 49.1

Ad* 104 10.6 9.5

Elderly 3.6 4.7 3.0

Infants

Children

Adokocents

Adtits

EidedY

Folly

Van* EnwProcl

22.5

341

25.4 13.6 30.2

8.3 8.9 9.5

41

HasN-7

110 100.0 71.4 42.9

5.7 5.7 71.4 . 28.6

51.1 71.4 71.4 28.6 28.6 . . . . . .

. . .

'Nine Pricilicoers lor this;rostotation are Mao prcnking Ovary cafe.

2Three Nuns Practlionts competing cortical: vograffs did *supply InfornatIon the types of care Vovided.

hat Huy Sub, Mafia belay, Jane M. Gentni, and Loris Kinyon. "LongitudinalStudy of Ha Practitioner," Phase II (DHEW Pub. No. 78-92)September 1978.

7:
School Nurse Practitioncas

School nurse practitioner training programs focus on health neees of school-age children in the schoui setting. Since the first training pro&-am

was established by Dr_ Henry Silver at the University of Colorado, other formal programs have been started. The Division of Nursing of the Bureau of Health Manpower of DHHS currently funds four school nurse practitioner programs that graduate 60 students annually (see table 3).8 School nurse practitioners working in close collaboration with physicians provide school health care in 37 States; many cities and counties have

actively integrated them into their school systems (63). The program at the University of Colorado is a 16-month course of study that trains registered nurses to assume basic responsibility for managing many of the health problems of school children. School nurse practitioners are prepared to offer comprehensive well-child care and to

identify and asvess the factors that may produce learning disorders, psycho-educational problems, perceptive and cognitive difficulties, and

behavior problems as well as problems causing physical disease (64). Few data on the actual performance of the school nurse practitioner art available. The School Project in Colorado, one of four school health

projects initiated and funded by the Robert Wood Johnson Foundation in 1978, expects to use school nurse practitioners in collaboration with physizians to provide services in four broad areasthe evaluation and management of health status, the evaluation and management of growth

and development, the promotion of health teaching and health counseling. and the integration of health care (65). In a letter to the Governor of Iowa, Dr. Silver reported that school nurse practitioners in two economically

deprived suburbs of Chicago are providing ongoing and preventive health

care. They also treat "cases which previously might have required visits to

any emergency clinic in hospitals outside these communities (or probably would have received no care at all). They carry out physical examinations

for all the children within the district to identify problems and followup

on those previously ident:ficl or ignored. About 20 percent of the children

are referred to a physician" (63).

Other Nurse Practitioners Who Provide

Child Health Services

Students in midwifery, maternity, and some family nurse practitioner programs, as well as those in pediatric nurse practitioner and school nurse

practitioner programs, are prepared to deliver services to infants and

children. All programs emphasized care of the healthy infant and child, the child with mild acute illness, and the child with a mild attack of a

chronic illness_ About 80 percent of the programs prepared students to

assume health care of healthy infants and children, and children with mild

problems. Only about 50 percent taught the management of mild chronic

8 Private communication wit.' lie Division of Nursing. Bureau of Manpower. Department of

Health. Education. and Welfare. February 19811

758
illness (66). The pediatric nurse practitioner training programs, however, offer the most intensive and concentrated instruction in such areas. The

practice patterns of nurse practitioners providing child health services are

similar to their training preparation.

The Child Health Associate and

Other Physician Assistants Who Provide Child Health Services

The Child Health Associate Program established at the University of Colorado Medical Center in 1970 remains the only physicians' assistant program that trains physicians' assistants who are specialists in pediatrics. The program lasts 3 yeari and includes the basic sciences, history taking, physical diagnosis, medical and surgical subspecialties, pharmacology, emergency medic-bac. psychosomal :lc and emotional problems, and devel- opment The training differs from the medical school approach in its "concentration on the practical application to pediatrics of factual and

comprehensive information; and the elimination of extensive consider- ation of subject matter not relative to pediatrics and to relatively

uncial-non, severe or disabling conditions" (67). Clinical experience is obtained in the nursery, well-baby clinic, pediatric wards, and various community facilities. A I-year internship in a variety of settings is

required. In this manner, the child health associate is prepared to deliver most of

the services utilized in ambulatory child care and routine hospital care of

the newborn, including prescribing certain drugs under a physician's

supervision. All these activities are recognized in the Colorado law (68). Serious illnesses and complex cases are referred to physicians. In a 1978 national survey of physicians' assistants 23 percent of the 3,295 respondents, including child health associates, designated pediatrics as their primary discipline and 1.8 percent designated pediatrics as their secondary discipline? Almost 3 percent (114) said the' upervising physician was a pediatrician. Without question, some physicians' assistants employed by other medical specialists, such as family physicians, are

also providing some service to infants and children.

FUTURE ROLE

The future of the new health professions that provide child and maternal care depends on their professional competence and on the social context within which they function. As noted earlier, official recognition

of pediatric nurse practitioners, nurse midwives, and physicians' assistants by concerned medical organizations came relatively early in the develop- ment of the professions. Since that time they have had the opportunity to demonstrate their professional competence and have received varying

9 Private communication with the Association of Physicians' Assistants Programs and American

Academy _A- Physicians' Assistants, 1978 Survey, unpublished preliminary data

759

75 6
degrees of recognition from patients, individual physicians, and Federa:

and State governments. Concurrently, the societal forces instrumental in

determining their future changed; the social climate of today differs

markedly from the one in which the profession began to flourish.

Profession-Related Determinants

Quality or Care

In order to be recognized as qualified providers of child and maternal

health services, new health professionals have to demonstrate their ability

to deliver quality care. The inadequacy of current methodsof defining and measuring quality, particularly when it relates to clinical decisionmaking, creates a major difficulty (69). Many of the problems associated with child

health are characterized by ill- defined, self-limiting conditions and by

symptoms for which there are no recognized and accepted therapeutic

techniques. In general, the use of outcome as a measure of effectiveness is of questionable value because the determinants of outcome are often out of the provider's control and may be the result of economic, social, or

other nonmedical factors (70). In addition, the techniques for assessing

the performance of new health professionals have many methGclological

problems (7l ). Of specific concern is the fact that many evaluations have

been performed by educators and other proponents of the new professions. Nevertheless, a recent rigorous review of studies comparing the care prc,vided by nurse practitioners (including pediatric nurse practitioners) and physicians' assistants with that given by physicians concludes that

"nurse practitioners and physicians' assistants provide office-based care

that is indistinguishable from physician care" (721. This finding duplicates

that of an earlier evaluative review (73). Specifically, child health associates compare ....,vorably with pediatric

residents and medical students in formal knowledge, and compare

favorably with pediatricians in their ability to diagnose the problems of

amhilatory pediatric patients (74). Pediatric nurse practitioners are proficient in assessing normal and

abnormal findings in children. One study demonstrated an 86 percent

agreement between pediatric nurse practitioners and pediatricians in

appraising the physical status of children; in only 0.7 percent of the cases

was the difference considered significant (75). Other studies have

demonstrated that pediatric nurse practitioners are as competent as physicians in achieving health care objectives such as the satisfactory

health status of their patients, or completing immunizations (76). The few

quantitative studies assessing the quality of care provided by school nurse

practitioners show they coroammicate better with family, teachers, and

physicians in the community than school nurses(7Z 78). Nurse midwives can provide a range of specific services of equal or

better quality than physicians for normal newborns and women. In a welldesigned quantitative study, nurse midwives were reported to increase the

amount of prenatal care and decrease the rate of premature and neonatal

760

,ej
mortality in a county hospital (79). Another experimental study of uncomplicated deliveries showed no significant difference in thz outcome of care when provided by nurse midwives or by house staff except that patients of nurse midwives complied more often in keeping appointments and that few patients of nurse midwives underwent forcep deliveries (80). A recent quantitative study compared infant health status and expenditures for care before and after the implementation of a nurse midwifery

program. It also compared infant mortality rates in counties taking part in

the program with those of nonparticipailing counties. Infant health status

improved during the grog Fin's course with respect to birth weight and disease present at birth. Improvements in the gestational period and neonatal mortality ratios v ere also observed, but results were not conclusive_ The infant mortality rate was lower in the counties with the midwifery 2:4-ograrn. However, the authors do not attribute this solely to

the use of nurse midwives (81).

Favorable results in the quality of care delivered by nurse midwives arc

also reported in less rigorous, observational studies. The population served by Frontier Nursing Service Program, which retains and uses nurse midwives, has not had a single maternal death since 1954. In general, the health status of infants delivered in this program is superior to that o other infants born in the United States with respect to still births, premature births, and neonatal deaths (82). The quality of care delivered by nurse midwives in urban settings is also

reported as being high. For example, nurse midwives increased the number of postpartum examinations in King's County Hospital in Brooklyn (83). The Childbearing Center in New York City uses a multidisciplinary team including obstetricians and certified nurse mid- wives to care for patients with a minimum use of technology in a homelike

setting. Potential high risk cases are referred for hospital care. The Center claims to provide high quality care for essentially normal women. "The New York State Health Department, the Health Systems Agency of New

York City, Blue Cross/1qm_ Shield of New York City ... have looked at

data and concluded we operate safely" (84).

Physician' Acceptance

The new health professional requires the acceptance of tie practicing physician for employment and for successful integration in a medical practice. Physician acceptance of new health professionals has been

studied in surveys on physician attitudes toward the need for new health

professionals and physician interest in employing new health profession- als, in surveys of physician satisfaction with the performance of new

health professionals, and in surveys that determine the employment status of new professionals. The first two types of surveys have many method- ological shortcomings. All the surveys have concentrated on the new

health professional working as a team member with the primary care physician (61). Such surveys generally show that inost physicians accept the concept of new health professionals. The number of physicians perceiving a need for

761
new health professionals is far higher than the number willing to hire one;

young physicians, physicians in group practice, and physicians who have

had firsthand experience with new health professionals are most interested

in ',king them. Willingness to delegate tasks and patient care depends on

the particular task and activity. Most physicians who hire new health

professionals are satisfied with their performance (61).

Nurse midwives have had difficulty in obtaining physician acceptance. In an early (1971) survey of the members of the American College of

Obstetricians and Gynecologists, more than 50 percent of the respondents

favored the delegation of more tasks to nurses and 30 percent favored

using nurses in an even broader role. Although the respondentsrecognized

a need for maternity, obstetric, and gynecologic nurse practitioners, they

concluded that nurse midwives were not needed. The study participants

favored delegating nursing services, but not those services trAditionally

performed by nurse midwives (85). Obs:etricia_i-gynecologists are thought

to fear competition from nurse midwives as threatening to their position as

the sole providers of a special type of medical care (CO. In contrast, in a survey of members of the American Academy of

Pediatrics as early as 1967, pediatric nurse practitioners received physician

approval and were cited as a successful example of the expanded role of

nursing (87). This and later studies showed that physicians' acceptance of

the pediatric nurse practitioner, whether or not they employed one.

depends on the activity performed. One of the most recent studies, a 1978 survey of the membership of the

American Academy of Pediatrics, confirms previous findings (61) that the

pediatric nurse practitioner was the type of new health professional

favored by most pediatricians. Pediatricians who employ nurse practitioners report that the greatest benefits of doing so are increased time for other activities and mere patients. All pediatricians expect to delegate more

patient care in he future. A higher percentage of those who currently

employ peZiairic nurse practitioners delegate patient care activities than do other pediatricians. On the whole, pediatricians are more willing to

delegate well child examinations of children under 12, routine well-child

care, and management of minor illnesses to pediatric nurse practitioners.

Fewer are willing to delegate well-child examinations of children over 12,

physical examinations, continuing care of children with chronic illnesses,

and care of newborns in the hospital. The employment status of new health professionals is the most relevant

indicator of physician acceptance_ Despite the reservations of many

physicians as to the need for nurse midwives, the unemployment rate of

nurse midwives is low. The 1976-77 survey of the American College of

Nurse Midwifery reports, however, that most nurse midwives (76 percent)

worked in institutional settings. Nearly 83 percent of the nurse midwives

participating in the survey were employed as nurse midwives, were in

school, or were in brief periods of transition. About 7 percent were permanently unemployed or retired. About 8 percent were employed in

positions not related to child and maternal health, and 2.6 percent wanted

to wr-rk as nurse midwives but were unable to do so for a variety of

reasons, including lack of certification, the need for a refresher course, cr

the inability to find positions in their communities (88). C ,nparable

762
results were re: -ted in a national survey of grad.laces of nurse

practitioner programs released in Septe,- ber 1978. This survey included graduates of 11 nurse midwifery programs, about 79 percent of whom

were employed as nurse. practitioners; 14 percent were employed but not as nurse practitioners; about 8 percent were not employed. (See table 5.)

(89). The same study reported the employment statur of graduates of 50

pediatric nurse practitioner programs, including 3 school nurse practition- er programs. About 75 percent of the pediatric nurse practitioner

respondents were employed as nurse practitioners; 14 percent were employed but not as nurse practitioners; about 12 percent were not employed. (See table 5.) The principal reason cited by nurse practitioners for their lack of employment was that they were not seeking employment The certificate program graduates not employed as nurse practitioners were working in

traditional nursing roles mainly in initutional settings. The majority of master's program graduates who were not employed as nurse practitioners were teaching in schools of nursing but not teaching nurse practitioners or were employed in hospitals, probably in supervisory positions (90). The employment status of child health associates is similar to that of pediatric nurse practitioners and nurse midwives. Currently 10 percent of physicians' assistants, including child health associates, are unemployed

or employed in fields where their training is not utilized (91). The reluctance of physicians to hire new health professionals has been

the subject of many studies and is generally attributed to their uncertainty

about licensing laws and regulations, insurance and liability issues, patient acceptance, space limitations, cost-effectiveness, and the effect of new

health professionals on physician-patient relations (92).

Patient Acceptance

Sensitivity to consumers' interests and concerns has directed attention

to the critical issue of patient acceptance and satisfaction with health care providers (93). If a provider is to achieve professional acceptance, public

recognition must be forthcoming. Indeed, as previously noted, physicians

say that uncertainty about patient acceptance deters them from hiring new

health professionals. Conversely, achieving patient acceptance depends in part upon the physicians' conveying to the patient a sense of approval of

the pediatric nurse practitioners, child health associate, or nursc midwife

(94). For new professionals to be well received, patients and physicians need adequate information about their qualifications and functions (95). An evaluative review of patient acceptance concludes that patients are generally satisfied with new health professionals. In fact, no contrary data have been reported. The factors involved in patient acceptance are the

type of care delivered, the independence of the new health professional, and the setting (93).

. Additional surveys concerning nurse practitioners providing pediatric

care in private and clinic settings confirm findings that patient acceptance

is dependent upon the health care activity and that the nurse practitioner

is accepted for well-baby care, physical examinations, and care for minor

763
TAU 6, InOynot of Ms Win Wu* by ikaciity and 104 st Wu Rohm Prom

sobot inn* carom

MIONsiy WW1 Folly kInt Psychiatric Total 144symad Ilabs Note Pow it No& Plod Sabo Penh nt Mbar Pont IOW Pont WO Pool Number Parall

Employed as NP

Proviting vinary care 172 73.2 9 601 26 68.4

ruching, winning, etc. 5 2.1 2 13.3

Employed, not as NP 28 119 2 13.3 9 23.7

NO lolOoPO 30 12.8 2 13.3 3 7.9

Total 235 1cao 15 100.0 38 100.0

EtrOrtgl as NP'

Provido9 Vimiq care 7 35.0 25 1.4 4 22.2

Toeing, consulting, etc. 3 15,0 4 1 Employed, not as NP 8 40.0 5 11 61.1

Not employed 2 10.0 2 3 16.7

Total 20 100.0 33 10,40 18 00.0

Emptord as NP'

Providing Primal care 179 10.3 34 66.7 30 53.6

Inching, consulting, act. 8 3.1 6 11.8

ErOxi, not as NP 36 14.1 7 13.7 20 35.7

Not employed 32 12.5 4 7.8 6 10.7

Total 255 100.0 51 100.0 56 100.0

Certificate

102 851 94

1 .8 4

4 3.3 8

1S 10.8 6

120 101,0 112

Master's

44 03.9 14

6 9.5 4

7 111 29

6 9.5 3

63 100.0 50

Total

146 79.8 108

7 3.8 8

11 6.0 37

19 '3.4 9

163 i00.0 162

0.10illIMMINMM

83.9 - - 403 77.5

3.6 - - 12 2.3

71 . - 51 9.8

5.4 . . 54 10.4

1(0.0 - - 520 100.0

23.0 3 17.6 97 47.6

0 3 17.6 20 9.8

58.0 11 64.8 71 34.8

6.0 16 7.8

100.0 17 100.0 204 100.0

66.7 3 17.6 500 69.1

4.9 3 17.6 32 4,4

22.8 11 64.8 122 16.8

5,6 70 9,7

1013.0 17 100,0 724 100.0

InciAsd in IN ontKay are rolgodenti functioning Ocity or in patl an Me Practitionn

Sum Hwy Solt Matta Lek" Jane M. Gentry, and LaiKinyon. "longitudinal Study of Noe Practitioner." Phase II (DREW Pub. No. 78-92) September 1918, rot
complaints (96). Parents are as satisfied with team care as with care from

the pediatrician alone and more satisfied with development assessments

provided by the team (97). A more precise measurement of patient acceptance is the willingness of a patient to use a provider's service. In a study of a prepaid group practice, mothers were assigned for well baby care either to a pediatric nurse practitioner or to a pediatrician. They were free to refuse participation in

the study and to change practitioners at any time. The acceptance of the pediatric nurse practitioner by the mothers was indicated by the high

degree of participal "-In in the study, the relatively low percentage of mothers who crossed -I- from the pediatric nurse practitioner, and the

insignificant difference .n rates of appointments with pediatric nurse practitioners and pediatricians cancelled (98). One of the few studies of patient acceptance of child health associates demonstrated that patients accept this care (99). The very low number of physician referrals made by the child health associate is a positive

indicator of such acceptance. Patient acceptance of nurse midwives has been recorded for patients of most economic classes, for patients of solo private practices, group

practices, satellite clinics, and hospital clinics, and for most care involved

in a normal pregnancy and family planningincluding management of pre-, intra- and post-partum care, family planning and routine examinations (100). One report demonstrates that patients were pleased with the understanding, supportive care of nurse midwive and with their

willingness to devote extended periods of time to their care (101). Other

researchers perceived advantages such as ease of communication (102) and the chance for increased patient control during delivery (103). A recent survey of middle class women in a childbirth education class

showed that women with prior experience with nurse midwives had more positive attitudes to and more knowledge about nurse midwives. Favor- able feelings toward nurse midwives increased with age, educational background, and number of births (104). The findings correspond to those

reported in studies of patient acceptance of physicians' assistants and

nurse practitioners. Patients who had prior experience with these practitioners and high levels of education were more positive in their attitude

toward the practitioners than other patients. Patients were more accepting of simple services (such as physical examinations) from new health

professionals than of services for serious conditions (105).

Productivity

The professional standing of the new health professions depends on

their acceptance by physicians, government, and others, which is, in turn, influenced their productivity.. Although little literature exists, findings

indicate that new health professionals who provide children's health

services increase the productivity of medical practices (106). Most studies of the productivity of new health professionals examine only those activities or office visits already delegated, not those that could be delegated. The many constraints on reimbursemen t and practice

4

765
patterns imposed upon new health professionals inhibit maximum

delegation of responsibility and thereby prevent productivity.

A recent comprehensive review of delegation, costs, and productivity

reports that up to 90 percent of the visits for pediatric primary care have

been safely delegated. The actual level of delegation varies according to

the age, size, and structure of the practice, the supervisory physician's

attitude, the triage system, and other factors (107).

In terms of time spent with patients, new health professionals

especially nurse practitionersare less productive than physicians. For

example, one study of primary care visits found that child health nurses

averaged 21.0 minutes per well child visit and pediatricians averaged 12.8

minutes (108). However, the accuracy ofminutes per visit as a measure of

productivity is questionable because of many other variables not included

in the calculation, such as variations in the content of visits and the

number of repeat visits after each measured visit (109).

Comparing the work accomplished by a practice before and after the

addition of a new health professional may be a more reliable indicator of

the productivity of the new health professional. Findings indicate that

primary care office visits in small practices can be increased by 40 to 50

percent with the addition of a new health professional; the percentage of

office visits in large practices is increased even mere. The authors

conclude that new health professionals providing office pediatric care can

be highly productive (1; 0). Other evidence indicates that pediatric nurse

practitioners can rovide primary pediatric care in a large urban public

health system (111). When productivity is measured in terms ofsubstitution ratio (i.e., that

fraction of a physician a new health professional replaces) the substitution

ratio of physicians to new health professionals in pediatrics in a large

health maintenance organizadon wasfound to be 0.48 (112).

Less accurate information is available on the productivity of nurse

midwives and other new health professionals in obstetrics-gyn=ology.

Research suggests a nurse midwife on the staff of a practice increases the

volume of patient visits from 23 percent to 98 percent depending on the

type of practice (113). Nurse midwives are about 23 percent as productive

as obstetricians when the number of deliveries is used as the output

measure (113). As noted in studies of the acceptance of nurse midwives by

physicians, obstetrician-gynecologists are extremely reluctant to delegate

deliveries. Thus this figure may not represent nurse midwives' productivity, but may reflect the unwillingness of obstetrician-gynecologists to

permit nurse midwives to participate.

Cost-Effectiveness

Governmental acceptance and acceptance by physicians, hospitals, and

other professional organizations has become more and more dependent

upon the cost-effectiveness of the new health professionals. They are cost- effective as gauged by their training costs compared with those of

physicians (114). The Institute of Medicine reported that in 1972-73 the

average cost of training a medical student was 512,650 per annum within L.

range of 56,900 to S18,650 (115). The average annual cost of training a

766 1'4
student in a pediatric nurse practitioners certificate program was $6,700; in nurse practitioners masters programs $14,300; in physicians' assistant programs $12,200; in nurse midwifery programs $9.300 (116). The training

costs for nurse practitioners and nurse midwives did not i elude those for nurses' training. When these figures were extrapolated for 1978, assuming

a 7 percent rate of inflation for medical schools and training programs of new health professionals, physicians were found to be five to seven times more costly to train than new health professionals (117). This disparity would be even greater if the costs of graduate medical education in

primary care were factored in (118). A more sophisticated calculation includes the costs of residency training

and the opportunity costs associated with the longer training period. It establishes the difference in training cost for new health professionals and physicians at S113,000 per provider. According to both analyse- physi- cians are much more costly to gain than new health professionals (118). Determining whether adding a new health professioaal to a practice is cost-effective is exceedingly complex. It requires detailed information on the level of productivity of the new health professionalsthe mode of utilization in the practice (are they improving the quality of the services, adding to the variety of ::ervices provided, or increasing the case load?), the amount of physician supervision, and the physician's effort. Cost- effectiveness also depends on factors external to the practice, such as the

demand for medical services and reimbursement policies. Many studies are faulty, but the results have been consistent. Available evidence suggests that new health professionals can improve

the cost-effectiveness of a medical practice. Based on the difference in

time spent with patients by physicians and new health professionals and

on the difference in their employment costs, appropriate medical services can be delivered by a nurse practitioner at about two-thirds to three- quarters of the cost of a physician and by a physician assistant at about one-third to one-half the cost (119). However reductions in practice

expenses will accrue only if the physician's own work does not decrease and if the medical services provided by the nzw health professional are

substitutive and not additive.

The difference in average salaries betweer. physicians and new health professionals is at least $30,000 per year. Little evidence supports the

conclusion that this difference is diminished by the costs of support or auxiliary services or overhead required by the addition of such employees

to a practice. Thus, the hiring of a new health professional can be a

substantial cost saving to the employer in the delivery of customary office primary care (120). Pediatric nurse practitioners deliver primary pediatric care economically in a large urban public health system (114). Whether

the savings will be passed on to patients or to the taxpayer is not clear. One study reports that in practices with new health professionals, the

average billings per visit to the patient and to the third-party payer were not as high as billings in practices that did not employ them (121). The savings from substituting new health professionals for physicians in office settings were calculated to be about 20 percent of total provider costs. The calculation assumes a low level of delegation and factors in the

size of the medical pract:ce and market problems (122). If new health

'767

7 tG
professionals were used to their maximum capabilities, provider costs

would be reduced even more.

Similar analyses have not been attempted for nurse midwives. However,

based on a casual examination of training costs, productivity, and salary

differentials, considerable cost savings are expected in total provider costs

with the utiliza.tion of nurse midwives. In one childbearing center that

employs nurse midwives, deliveries have been markedly less expensive

than traditional hospital deliveries for both the families and the health

care provider (123).

Payment for Services

Financial remuneration is generally equated with professional status.

Thus, Federal and Federal-State programs' payment to a profession is a

measure of governmental recognition of the profession. The Federal Government has been ambivalent in its response to the new health

professions, including those that deliver child and maternal health

services. Apprk,ximately 9 years after the Government funded the first

training program for nurse practitioners and physicians' assistants, it

remains inconsistent in paying for their services. Private insurers are

equally hesitant. When payment for the serv;Ezes of new health professionals is permitted by Federal programs and --:vate insurers. it is almost

always to the physician or other employer thus linking the new health

professionals directly to the physicians and their needs. Ir.direct payment

and other public and private payment practices have deterred the new

health professions from fulfilling their potential by limiting their geographic mobility and the type of services they provide.

Medicaid and Medicare

Medicare and Medicaid are the principal Federal and Federal-State

programs that pay for provider services. Payment of new health professionals varies under Medicare with the setting of the provider (124). The

basic relevant Medicare Part B regulation which applies to new health

professionals in noninstitutional settings prohibits payment for medical

services not rendered by a physician except for such services "furnished as

an incident to a physician's professional service of kinds which are

commonly furnished in physicians' offices and are commonly either

rendered without charge or included in the physician's bill." The "incident

to" provision was intended to cover blood tests and other simple

pr 3cedures performed by medical assistants and office nurses. It was later

interpreted to mean that services provided by new health professionals are

not eligible for reimbursement unless they are provided underthe personal

and immediate supervision of a physician and are services normally

delegated by physicians. The physician is required to be present when the

service is delivered. Thisinterpretation does not recognize that new health

professionals are trained to perform some diagnostic and treatment tasks

and that many States authorize them to perform these tasks.

Under part A of Medicare the salaries and expenses of new health

professionals employed by hospitals, nursing homes, or other institutions

768
can be included in the cost formula for reimbursement. Similarly, a Medicare cost reimbursement program for federally funded health centers allows them to include the salariec of new health professionals in their cost calculations if they are directed by physicians. Health maintenance organizations (HMO's) may include new health professional costs in capitation rates. As under Medicare, Medicaid part A allows salaries- of new health professionals may be included in cost reimbursement formulas for hospital reimbursement ar for HMO capitation rates if payment is in accordance with State law (124, 125). In all States where they are allowed to practice, new health professionals may be reimbursed by Medicaid through their supen-iii ir.g physicians for services provided in noninstitu- tional settings which are "incident to" the physician services. The laws permitting payment for the services of new health profession- als vary from State to State. Twenty-one States have explicit policies which provide for payment for the services of some new health professionals in some ambulatory settings; twenty-one States and the District of Columbia have explicit policies which prohibit payment for the services of new health professionals regardless of practice setting; eight States have no explicit policy but acknowledge that physicians do bill for the services of new health professionals in their own names and are reimbursed (126).

The Federal regulation governing Medicaid payment requires physician supervision in all settings, but leaves it to the States to define the degree of supervision. Among the States that permit payment for services provided by new health professionals there is, therefore, considerable variation in supervision policies as well as in payment levels and other payment practices (127). In some States, reimbursement policy has not kept pace with licensing policy, and the new health professionals may have legal recognition but do not have recognition for payment purposes.

Rural Health Clinics Act

The Medicare and Medicaid policy of not paying for new health professional services unless they were performed under the direct supervision of a physician has been especially hard on rural communities, many of which rely upon such professionals employed in rural clinics. The passage of the Rural Health Clinics Service Act in 1977 was heralded as an important advance for new health professionals. It also brought needed medical services to areas where they were lacking or difficult to obtain (127). The Act takes into consideration the many isolated communities that have not been able to attract or retain physicians and provides payment under Medicare and Medicaid for the services of new health professionals in certified clinics. To be approved under the Act, a clinic must be located in a State that permits physicians' assistants or nurse practitioners to furnish primary care and in a rural area which has been designated medically underserved or a health manpower shortage area by

the Public Health Service. Reimbursement is related to cost. The level of physician supervision has been modified and Federal payment is authorized when a physician may be available only for indirect supervi769
sion and consultation. Because of the likritr-d provisions of the Act, additional initiatives are required if liberalized payment to all new health

professionals in underserved areas is desired. Until the passage of the Rural Health Clinics Act, nurse midwives were

treated as nurse practitioners and physicians' assistants under the Medicare and Medicaid programs. The Rural Health Clinics Act differentiates between nurse midwives and other new health professionals

for the purpose of certifica.tion. In order for a facility to qmalify for certification, it must have a nurse practitioner or physicians' assistant on

its staff or paid by the fa+ ility participating in the provision of primary

car:. Once the facility is ce.-tified, payment can be made for the services of

the nurse midwife. Payment is based on the number of visits for which the

services of qualified provider.: were rendered (128, 129).

CHAMPUS

Nurse midwives have received fiscal recognition from the Civilian Health and Medical Program of the Unitl.,riacd Services (CHAMPUS). Until the passage of P.L. 95-457 (the Defense Appropriations Act of 1979) certified nurse midwives were allowed payment only when physician

supervision and referral occurred. The 1979 Act is more liberal in its attitude and provides for such payment e ten when rendered independently of physician referral and supervision (130). In addition, legislation has

recently been introduced in Congress to reimburse for the services of nurse midwives under Medicare and Medicaid (131). The legislation has been suppor.ecl by the Secretary of DHEW with the conditions that payment be made to the employing physician or clinic and that there be

an all inclusive rate for a package of services.w

Private Insurers

Blue Cross/Blue Shield and commercial insurers usually pay for the

services provided by nurse practitioners, nurse midwives, and physicians' assistants only when such services are directly supervised by a licensed

physician.. Payment is usually made to the physician. The practice reflects

the policy of the individual companies and is in accord with the State laws

regulating insurance practice. Blue- Cross/Blue Shield and commercial

insurers have engaged in experimental programs, but standard payment procedures in most States have not substantially changed (132). Recently, a few States have drastically changed their laws or regulations

regarding private insurance practice to require payment for the services of

nurse midwives and, in one instance, nurse practitioners. The General Assembly of Maryland passed a bill effective July 1, 1979 that requires every health insurer in the State to offer the option of "care, treatment, or

services rendered by a nurse midwife" (133). A controversial provision in

the new Act is that the insurance company cannot req. -e the nurse

midwife to be under the supervision, orders, or employ of a physician as a condition for payment. The bill also authorizes Medicaid to contract with

I° Private communication voila the Office of the Assistant Secretary of IS=Ith. February 1980.

770 7= (
nurse midwives for provision of care for eligible persons: New Mexico

passed a bill in 1979 that requires private insluers to pay for services by

nurse midwives. The Insurance Commissioner of Utah ruled that insurers

in Utah could not deny payment for the services provided by nurse

midwives (134, 1 35). Most recently, Mississippi passed legislation requiring all insurance companies regulated by the State Insurance Agency to pay nurse practitioners directly for their services (136). Nurse midwives are included

in the definition of nurse practitioner in the legislation because it was

passed with the intent of reducing the cost of medical services. The level of payment, which is to be decided by regulation, may be lower than that received by physicians.

Credendallog

Professionalization entails obtaining official approval of individuals to

practice their professions and official approval of training programs from

government, recognized professional organizations, or both. Both profes- sions and State Governments issue credentials. Although it has never

actively taken part in the credentialing process, the Federal Government has an inherent interest because Federal programs that pay for the

services of health professionals require standards for their performance. As noted earlier, recognition was achieved by nurse midwives, pediatric nurse practitioners, and child health associates in 1971 from their professional groups. Cerification, the process by which nongovernmental agency grants official recognition, was achieved later. A national certifying examination for physicians' assistants was initiated in 1973. It

was developed and is updated annually by the National Board of Medical Examiners and administered by the National Commission on Certification of Physicians' Assistants (137). The American College of Nurse Midwives certifies nurse midwives by means of an examination after they

complete an accredited program (138). Pediatric nurse practitioners can

voluntarily obtain certification on the basis ofa competence exzmination

from the American Nurses Association or the National Board of Pediatric

Nurse Associates and Practitioners (139). Health professional training programs are accredited by professional organizations. The accrediting body for nurse midwifery programs is the American College of Nurse Midwives. Programs at the master's level can

also obtain approval from the National League for Nursing, but approval is not required. The Council on Allied Health Education and Accreditation of the American Medical Association is the national accrediting body

for child health associates and other physicians' assistants. The American Nurses Association accredits certificate nurse practitioner programs and

the National League for Nursing accredits master's level nurse practition- er programs that arc components of degree granting programs." Permission to practice a health profession (legal recognition) is granted by State license e. The provisions of medical and nursing practice acts

II Private commtinicatio* a with the Division of Nursing, Bureau of Health Manpower Department of siP111.4. Ebscation. and Welfare, March 1980.

771
vary widely among the States. All State medical practice acts, nevertheless, restrict the right to perform all medical and surgical procedures to

legally qualified physicians. In addition, State laws have historically

limited the legal rights of physicians to delegate medical tasks. The

development and utilization of new health professions made it necessary

for the States to give them legal recognition, or the new professional would

be open to charges of practicing medicine without a license and the

responsible physician would be subject to charges of promoting the illegal

practice of medicine (140). The legal recognition of the new health professional varies by

professional type and by State. All States, however, have similar laws and

regulations that tie the medical activities of nurse midwives and physicians' assis.ants (including child health associates) directly to those of the

physician, and limit the services new health professionals can provide

(141). A principal difference between nurse midwives, nurse practitioners, and

phyaicians' assistants statutes, and general health statutes. Two States had

first licensed in their capacity as nurses under State practice ac 2. Some

States require an additional license for nurse midwives, pediatric.; nurse

practitioners, and other nurse practitioners before they can practice. Other

States require less significant changes in regulatory statutes.

Laws and regulations governing the practice of physicians' assistants,

including child health associates, had to be developed because it is a

completely new profession (142).

Nurse Midwives

A 1976 survey of State and other jurisdictions by the American College

of Nurse Midwifery showed that almost all States and jmisry -71ons had

laws pertaining to the practice of nurse midwifery. The Sates legally

recognized nurse midwives in statute, rules and regulations, or both, or by

accepting the joint statements of State professional organizations with

defined standards for nurse midwifery practice. The statutes iu 16 States

were specific to nurse midwifery. In other States the legal bases were

statutes regulating another health profession, lay midwife statutes,

physicians' assistants statutes, and general health statutes. Two States had

no legal basis for nurse midwifery and five States restricted nurse

midwifery practice because their Attorneys General found the practice of

nurse midwifery in conflict with existing laws. (143) (See table 6.)

As of 1980, laws or regulations specific to nurse midwifery practice have

been established by 16 more StatesAlabama, Alaska, Colorado, Delaware, Hawaii, Idaho, Indiana, Maryland, Massachusetts, Michigan,

Mississippi, North Carolina, Oregon, Rhode Island, South Carolina, and

Washington (144). Standards for nurse midwifery practice, such as licensure, are currently

set in many states by statutory agencies which may or may not have

representation from nurse midwifery. Utah recently became the first State

to establish a separate Board of Nurse Midwifery.I2

12 Private communiaition with the American College of Nurse Midwifery. February 1980.

772 7
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Nurse Practitioners

The legal basis for the practice of nurse practitioners is the nurse

practice act of each State. Little change has been required in the

regulatory statutes of some States. In others, statutory changes that permit

nurse practitioners, including pediatric nurse practitioners and school health practitioners, to practice have been needed. They are either

"additional act" amendments to nurse practice acts that "expand the

definition of nursing to include acts authorized by administrative

regulations" or by the enactment of new nurse practice acts that redefine a

nurse's activities. The amendments can be in the form of delegatory

amendments (also called authorization amendments) or regulatory

amendments. Delegatory amendments allow the physician to delegate

tasks at his own discretion; regulatory amendments mandate the State

medical licensing board or other official body to authorize practice by

new health professionals unaer conditions set by law and regulation. Some

States require specific licensure for pediatric nurse practitioners, school

nurse practitioners, and other nurse practitioners before they can practice

(145). Others have not changed their nurse practice acts but have

amended their medical practice acts to delegate medical tasks to nurses if

the tasks are performed under a physician'ssupervision. Even though only a few States specifically require it, supervision of

nurse practioners by physicians is implicit in State laws. The degree of

required supervision varies among States. Although the requirement for

supervision constrains the use of nurse practitioners in physician-poor

areas, no State requires onsite supervision for nurse practitioners working

in child medical care. No constraints are placed on the number of nurse

practitioners a physician can supervise. The type of nurse practitioner recognized, educational and examination

requirements, permitted and prohibited activities, and the prescription of

drugs also vary from State to State. Laws and regulations have undergone amendments which broaden the

scope of nursing practice, but the relation of medical diagnosis and medical treatment to the enlarged scope of practice remains imprecise.

"What is clear is a trend to allow nurses some diagnostic and treatment

authority with nurse practitioners allowed more authority than other

lice7v:ed registered nurses" (146).

Physicians' AssistantsChild Health Associates

New legislation has been required for physicians' assistants to practice

in all instances. Most regulation of physicians' assistants has been through

amendment of medical practice acts. Child health associates are the

exception. The Colorado Child Health Associate Act, for example, defines

the scope of their practice and permits them to practice pediatrics under a physician's supervision (147). It does not permit more than one child

health associate to be employed at any one time by any one physician. It

does permit the child health associate to prescribe drugs which have been

approved by the Colorado State Board of Medical Examiners.

774
The legal basis for the practice of physicians' assistants varies with

respect to the same characteristics noted for nurse practitioners. A number of States also specifically limit the number of physicians' assistants a

physician can supervise; two is usually the upper limit (148). Few States allow physicians' assistants and nurse practitioners to prescribe and

dispense drugs. Where prescribing is permitted, the conditions are clearly spelled out. (149).

Laws and regulations concerning the legal basis for the practice of new health professions vary widely. They are often ambiguous, due to the changing role of the professions, the cumbersome nature of the legal process, and the unwillingness of many State bodies to make specific

commitments. It is no wonder, therefore, that uncertainty about licensure laws is one of the primary reasons physicians do not hire new health

professionals.

Social and Economic Forces

Recent radical changes in the economic and professional climate of the United States will have an effect on the future of the new health

professions. The growth in Federal spending for social good has declined, and is under continuous pressure for further and more rapid decline. As a

result, the health sector will have to vie with other social programs for public funds, and competition may become acute among health programs. During this period of economic constraint, recipients of public monies will be scrutinized even more carefully than before. The number of physicians in the United States has grown dramatically, and the, trend is expected to continue at least until 19901/50). New health

professionals depend legally and economically on physicians, and some

areas of their education and function overlap those of the physician. The

future of the new health professional who can provide child and maternal health services is therefore dependent on the supply and distribution of physicians, especially pediatricians, obstetrician-gynecologists, and family and general physicians.

The Number and Distribution of Physicians

The Nation's supply of physicians is expected to be nearly 600,000 by

1990, an increase of about 60 percent from today's level (151). Because the number of physicians is expected to increase faster than the general population, the ratio of physicians to population is expected to be 2313

per 100,000 in 1990 compared to 165.5 per 100,000 in 1974 (152). (For the

supply of general and family physicians, pediatricians, and obstetrician- gynecologists for 1976 and the projected supply for 1990, see table 7 below.) The increased number of physicians who provide pediatric and obstetrical servicesand, more importantly, their ratio to the popula- tionraises the question of whether a need will be felt for new health

professionals who deliver child and maternal health services. If one

7

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Cosandttes.

assumes the provision of child and maternal health services is the

prerogative of the physician, one must determine how many active

physicians are needed to provide such care and how many will be

available. Two recent projections indicate that a surplus ofphysicians will

be available in 1990. One puts the surplus at 23,000 to 51,400, the other at

about 50,800 (I 5 3). Tbe adequacy of a numerical accounting of physician requirements is

questionable. The real interest of society is in the supply of health services,

not in the supply of physicians per se. Factors such as physician

productivity and hours worked affect the supply of physician's services

and are not fully amounted for in the aforementioned projections. They

may not be important in this instance because a decrease in the hours

physicians work may be offset by an increase in physician productivity.

Many variables that should be included in determining physician

requirements, such as scientific advances, changes in quality standards,

and organizational changes in the delivery of services, cannot be predicted

for accurate quantification. The Task Force on Pediatric Education estimates that there should be

enough pediatricians by 1990 to provide all American children with good

medical care, but states that "it is unhlcely there will be an excess of

pediatricians in 1980 and 1990. Indeed, it is questionable that the health

care needs of infants, children, and adolescents in this Wintry can be met

adequately in those years." This prediction takes into account such

variables as other participants in the delivery of child health care, the

changing nature of pediatric practice, the level of fertility, the changing

nature of _health needs of the pediatric population, and the effects of

scientific advances on the demand for services (134).

The Task Force does not expect the expanded supply of pediatricians to

reduce the need for pediatric nurse practitioners in the future. Instead, it

endorses them as important members of the health care team and notes

that the preferred model of future practice is pediatric group practice

including one or more of the new professionals.

776 7 75
With respect to other providers of child health services, the Task Force reports that about 20 to 30 percent of a family physician's practice is presently concerned with child care. It suggests that the elderly may require more of physicians' time as the Nation's population ages. Nonetheless, the anticipated number of family physicians per 100,000 people may be too large to be compensated for by the aging of the population (155). (See table 5.) Future requirements for obstetrician-gynecologists on a disease-specific basis have been estimated at 26,000, far less than the projected supply of 33,230. A similar estimate is based on the assumption that, by 1990, 5,024 nurse midwives will perform pre-, post- and intrapartim2 care for normal pregnancies, family planning scrims, and routine examinations. Accord- ing to this prediction, the requirement for obstetrician-gynecologists will be lowered to 24,000 (156). The American College of Obstetrics-Gynecol agrees that the number of obstetrician-gynecologists will increase bogy y 1990. "The increas- ing numbers. . . reduce any substantial demand for other heulth care professionals to provide services at the physicians' level."" It also notes that current efforts to determine future physician requirements lack technical sophistication and that no current methodology is completely satisfactory (157). Some authorities contend, on the basis of the medical market place, that the expected rate of increase in the physician population will decrease the patient load per physician and thereby the number of services provided by each physician (158). Because the volume of services provided in a practice is a factor in the employment of new health professionals, they would be adversely affected. It has been suggested, however, that medical care does not operate as a traditional market and physicians can increase the demand for their services. On that premise a decline in the volume of services may not be sufficient to affect the employment and utilization of new health professionals (159). In addition, if the medical care market operates according to the traditional forces of supply and demand, the dramatic increase in the supply of physicians might encourage more physicians to practice in underserved areas and in the primary care specialties, i.e., family practice and pediatrics. Evidence on this theory is still inconclusive (160). The current uneven distribution of physicians by specialty and geographic location has been stressed in legislation and in numerous analyses and reports (161). Until now, increasing the number of physicians has done little to equalize physician distribution. In fact, the ratio of primary care physicians to 100,000 population fell from 421 in 1963 to 39.0 m 1976 (162). The Interim Report cf the Graduate Medical Education National Advisory Committee states "in spite of a 31 percent increase in the aggregate supply of active physicians over the 1965-75 decade, the specialty and geographic distribution of physicians and

13 Private communication with Warren IL Pear of the Anierican College o: Obstetricians and Gnnuologires. March 1901

7$G 777
assurance of equitable access to services by all segments of the population

has caused continuing concern" (163).

Acknowledging the limitations of current measures of physician

distribution, the report notes that the ratio of pediatricians to 100,000

population ranges from 3 in South Dakota to 17 in Maryland, with a

national average of 8.9. The ratio of obstetricians-gynecologists to 100,000

population ranges from 3 in South Dakota to 16 in Maryland, with a

national average of 8.3. Family and general physicians, of all mectical

specialties. have the most uniform distribution among States (164). The

disparity in physician concentration within States and between rural and

urban areas has led to the designation by DHEW of some areas as being

short of health manpower (165).

Distributional problems will probably continue in the near fur ire.

However, increases in physician supply may be of such magnitude as to

cause more physicians to locate in areas with lower population densities

than before, even though the available evidence indicates that fees

increase as the density of the population increases (166). Preliminary

evidence suggests that board certified specialists, including pediatricians

and obstetricians-gynecologists, are opening practices in towns of small

and medium size (167). Information about rural and inner city areas is not

available. The current supply of physicians may not be large enough to

warrant emigration out of a specialty or location, but the projected supply

of physicians might be sufficient for diffusion to occur.

Disease Prevention Efforts

The growing national interest in illness prevention may also affect the

future of new health professionals who deliver child and maternal care.

The 1975 National Conference on Preventive Medicine (168) has been

followed by a series of significant meetings on the prevention of disease

and injury and the promotic i of health (169).

Congress has demonstrated a similar concern in the 1974 National

Health Planning and Development Act (170), which requires Health

Systems Agencies to include the prevention of disease in their agendas.

The goals stated in the Act include a reduction in the infant mortality rate

from the current rate of 15.1 per 1.000 (171), or fewer than 18 deaths per

1.000 live births for any health service area or population group. The

National Health Services Research, Health Statistics, and Health Care

Technology Act of 1978, as amended (172), emphasizes the need for

health services research in prevention of disease disability and premature

deaths.

Nongovernmental groups have also increased their activities in nrevention. For example, Blue Cross and Blue Shield plans have sponsored

health education programs.

Federal Trade Commission

Federal Trade Commission (FTC) efforts to increase competition

among health care providers (and thereby increase patient access and

lower the costs of health care) will affect the future of the new health

778 7 7
professionals. The FTC argues that physician control of entry to practice may insulate physicians from competitors, including less expensive

alternative providers. Although such restrictions may attempt to ensure quality, they may not provide consumers with consistently lower cost and

greater choice among services of acceptable quality ( I 73). The FTC has examined a number of issues, including the relation of physician dominance of Blue Shield plans to the costs of health care and

restriction of the ability of new health professionals and other nonphysi- clan providers to provide health care. It questions whether denial of

reimbursement to new health professionals may be influenced by the disproportionately large representation of the medical profession on

decisionmaking boards. At a recent meeting of the Health Care Financing Administration, a direct correlation was reported between physician

control of Blue Shield boards and fee level, thus confirming one of the FTC concerns. The FTC is also examining the control of hospital privileges that may hinder nurse midwives and other professional groups from practicing in hospitals.

PUBLIC POLICY ISSUES

This section presents the major public policy issues in the debate

surrounding the use of new health professionals for the delivery of child

and maternal health services. A position on the issues isnot taken, but the pros and cons of each issue are argued. Additional supporting data are in

the body of the paper. The pivotal issue is the role of new health professionalsespecially

pediatric nurse practitioners, school nurse practitioners, nurse midwives, and child health associatesin the promotion of child health and continued public support of these new health professionals. The new

health professional is assumed to function in a team configuration. A

debate on the critical issue of independent practice requires different evidence.

The advantages and disadvantages of three alternative public policies

for promoting child and maternal health services by new health profes- sionals are set forth. They are as follows: funding programs to train new

health professionals to provide child and matt...nal health services, financing tite provision of these services by new health professionals

through Federal and FederalState medical care programs, and clarifying

the legal processes that govern the practice of new health professionals. Although the arguments about each have not been weighted, it is

recognized that some are of greater importance than others. Furthermore, they must be assessed with respect to the two distinct and, at times, contradictory policy goals: improving access to and distribution of services an reducing the escalation of health care costs.

The evidence presented for each issue generally relates to new health

professionals who receive extensive and comprehensive training in the provision of child and maternal health services, not specifically to pediatric nurse practitioners, school nurse practitioners, child health

associates, or nurse midwives. Therefore the reasons for and against an

779

78
issue may vary in degree of relevance for each category. The arguments

presented may not apply equally to other new health professionals who

deliver child and maternal health services.

The three direct ways that government can promote the use of new

health professionals who provide child and maternal care are not mutually

exclusive, but can be used in tandem. Other public initiatives, which will

not be discussed in detail, can indirectly encourage their optima

utilization. Health maintenance organizations tend to use new health

professionals more often and more efficiently than any other form of

medical practice; team training stimulates the effective use of new

professionals in team configurations. New health professionals have

demonstrated exceptional capabilities and interest in the provision of

preventive services. Nevertheless, supportfor or opposition to any of these

approaches cannot be based solely on their effects on new health

professionals because these strategies have p afound effects on other

segments of the health care system.

OW:Won: In the interest of promoting child and maternal health, should....._

Awe be continued public support of new health professionals who

ppr, An care to children and women ofcliildbearing age?

The available evidence indicates that new health professionals trained

in the delivery of health services to children and women of childbearing

age can deliver a wide range of specific services at least comparable in

quality to the same services provided by physicians. The evidence is

strongest with respect to the quality of services delivered in the primary

care physician's office and prepaid group practices. New health professionals have been shown to improve the health status of children and

women of childbearing age, to improve the continuity of care, to assess

normal and abnormal physiciti findings in children and women of

childbearing age, to gather data aswell as physicians, and to communicate

and empathize with patients more effectively than physicians.

Studies on physician acceptance show that most primary care physicians accept the concept of new health professionals who deliver child and

maternal health care. They are sufficiently responsive to the concept to

generate a demand for the services of new health professionals. Even

nurse midwives, who have had difficulty in obtaining the expressed

approval of obstetrician gynecologists, enjoy a good labor market. The

vract future demand, however, is difficult to predict because it is related

not only to the supply, demand, and distribution of health practitioners,

but to the entire health tare delivery system and forces external to the

system- Consensus is equally positive with regard to patient acceptance of new

health professionals who provide child and maternal health services.

Acceptance has consistently been reported for care given by new health

professionals by patients at different socioeconomic levels and in most

practice settings, particularly clinic and prepaid group practices_ Patient

satisfaction is augmented when patients receive a sense of acceptance of

the new health professionals by the physicians. Another attribute of new health professionals who provide care to

children is their ability to increase the availability of children's health

780 7 7 j
c
structure and income. As the supply of physicians grows, market forces

may encourage physicians to reconsider their fee structures.

Crowing acknowledgment that Federal health expenditures will decline

in the near future results in weighing the support of new health

professionals against the need for other social services. By 1990 the supply

of physicians is expected to be adequate, or according to some theorists,

too large. Not only are the absolute numbers of general and

physicians, pediatricians, and -.3bstetrician-gynecologists expected to grow

significantly, but the rate of physicians in these specialties to the

population is likewise expectee; to rise.

The strongest argument for discontinuing public support of new health

professionals is this growth in the number of physiciansif one assumes

physicians should be the primary providers of this care. Not only will a

large number of family physicians, pediatricians, and obstetrician-gynecologists be practicing in 1990, but the anticipated increase in the

aggregate supply of physicians may encourage other specialists to provide

ambulatory child and maternal care as a result of competition within their

specialties. Therefore, it may be unnecessary to use new health professionals to provide these services. On the other hand, physician supply is not to be equated with physician

requirements. No method of projecting physician requirements has been

sufficiently developed to assess all the factors (many of which are not

quantifiable) that influence such requirements. Many factors, like scientific advances, changes in the organization of health care delivery, and

changing incidence of certain diseases cannot be predicted, but influence

the need for health care. For example, when the American Academy of

Pediatrics considered the nonquantifiable factors, as well as absolute

numbers of pediatricians, it concluded there will not be an excess of

pediatricians in 1990. The Academy noted that pediatric nurse practitioners working in teams with pediatricians deliver optimal pediatric primary

care.

In addition, the projections of physicians do not include a long-term

perspective of specialty supply. A recent study reports that one-sixth of

the physicians trained in primary care specialties, including pediatrics,

switched to nonprimary care specialties within five years of completing

residency training Using physician requirements as the criterion for determining the

adequacy of supply of child and maternal health services ignores society's

real interest, which is the availability of physician (or health) services, not

physicians per se. It also assumes that maternal and child health services

should be provided by the most highly qualified provider, i.e., the

physician. (Whether or not the family physician is as highly qualified as a

pediatrician to provide pediatric care, or as highly qualified as obstetrician-gynecologists to provide maternal care, is important but is not in the

scope of this paper.) Regardless of which medical specialties are best

qualified to provide child and maternal care, the training ofthe provider is

of peripheral interest when the focus is on determining adequacy of

supply. The essential requirement, then, is that a child or maternal health

service be of acceptable quality. The supply of physicians is therefore of

minor consequence in assessing the issue of public support for qualified

782
new health professionals, az: they have been shown to provide care comparable in quality to that provided by physicians for certain

conditions.

An increase in the number of physicians providing child and maternal care does not necessarily lead to an equitable distribution of such services. The current inequitable distribution of physicians has been documented

exhaustively. The lack of available child and maternal health service for some populations continues to be a matter of concern. Moreover, a

substantial increase in supply does not ensure that physicians will practice

in underserved areas or deliver care to some population groups, such as

the poor and socially deprived. Even with existing legal and reimburse- ment barriers, new health professionals have provided child and maternal health service in rural and inner-city areas. In some areas they serve as the only source of care. New health professionals are the most economically

feasible providers of care in sparsely settled locations that cannot economically support physicians but can support new health profession- als.

Preliminary findings indicate, however, that board-certified physicians, inc:nding pediatricians and obstetrician-gynecologists, were practicing in nonmetropolitan areas in response to supply that exceeded demand

during the 1970's. Board-certified pediatricians and obstetrician-gynecol- ogists were more frequently found in small townseven with populations as low as 2,500 to 5,000in 1977 than in 1960. Evidence of physician

dispersion into underserved areas was not found. Finally, the ability of new health practitioners to provide preventive

services, patient education, and counseling indicates continued public

interest lf, as anticipated, major Federal intervention in prevention

occurs in the near future, sufficiently trained health personnel may not be available to participate. Physicians will probably not be able to meet this need immediately. Other efforts to increase the availability of preventive

services delivered by physicians, such as incorporating the skills and

knowledge basic to prevention into medical school curricula, may require an extended period of time to be adopted. New health professionals may offer a short-term, and perhaps a long-term, answer to the need for preventive services.

Question: Is funding training programs an efficient way for Federal and State governments to promote new health professionals who provide child

and maternal health services?

Public funding of training programs is the least controversial way to

promote new health professionals who provide child and maternal health

services. Many obstacles are involved in changing current payment practices and laws and regulations regarding new health professionals. Although all indications point to a decrease of public support for physicians who provide child and maternal care, the practicality of the

educational approach persists and is not negated by th is action. The cost of training new health professionals is quite low_ in fiscal year 1978 total Federal payments to all programs for training all categories of nurse practitioners, physicians' assistants, and nurse midwives were less

than 25 million dollars. Funding mechanisms already exist The nature,

0

783
scope, and quality of education received by new health professionals

prepares them to provide needed child and maternal health services; the

brevity of training programs permits a relatively quick increase in the

supply of services. Federal and State assistance for training new health professionals who

provide child and maternal care also prozits medical schools and nursing

schools that offer training programs. The fiscal requirements of maintaining and expanding class size of existing programs and of initiating new

programs present barriers to educators. State education budgets put similar strains on community colleges to initiate and maintain training

programs; Federal assistance is often required. Critics of funding training programs fear that long-term Federal

support might result in restrictive Federal regulation, curriculum control, and other restraints on academic freedom. They also note that Federal

funding mey be a public extravagance and that the funding abilities of the

pri-4ate sector and State and local governments have not been thoroughly

tapped. In 1978, funds provided by the Division of Nursing, Bureau of

Health Manpower of DHEW, supported only about half of the operating

programs for nurse practitioners, including pediatric programs. State, municipal, and institutional funds and tuition also supported such

programs. Moreover, the large number of applicants to training programs

for new health professionals may indicate that suspending Federal support

would have only a marginal effect on the number of entrants into the

programs. However, the fiscal crisis of State and loge governments, the

possible loss of capitation support for medical and nursing schools, and

the general economic conditions resulting from inflation are likely to make Federal funds critically important to the survival of future

programs. Critics also note that the faculties of some programs to train new health

professionals, especially those in nonmetropolitan areas, do not have the

opportunity to learn of new developments in their field, thus diminishing

the educational value of the training program. If provisions for continuing

the education of faculty members were included in the funds for training

programs, faculties would get experience in the most recent diagnostic

tools, preventive measures, and treatment modalities, thereby improving

training program resources and the educational process. The variety of curricula among wining programs for pediatric nurse

practitioners, nurse midwives, and school nurse practitioners permits

innovation and flexibility, but leads to uneven quality in training.

Although most educators and other authorities do not think Government

should play a role in curriculum development, public policy could

encourage and support relevant professional organizations in the development of sound curricula.

Present Federal practices of funding training programs for new health

professionals usually limit the support to a given number of years. For

instance, a pediatric nurse practitioner program sually receives Federal

funds for a maximum of 5 years. This relatively short thee period play

preclude the development, maintenance, and strengthening of stable

programs.

784 7 3
The Federal Government has always used criteria that advance health

policy in funding training programs. One of the main criteria for funding programs that train new health professionals is that they train their graduates to provide primary care. Because Federal policy is geared to the unresolved problem of providing child and maternal health services in medically underserved areas, the greater question arises as to whether it should be used to specify that graduates practice in such areas. The 1976 Health Professions Educational Assistance Act, as amended by the 1977 Health Services Extension Act, includes provisions to encourage nurse practitioners to practice in health manpower shortage areas upon

completion of their training. Insufficient evidence has been found to gauge

the success of a particular prograin, but some evidence suggests that more new health profes:AonaLs trained in schools that emphasize rural practice move to rural areas than those trained in schools without such emphasis Mechanisms that link the funding of training programs to the program's ability to place its graduates in undeserved areas need further developMCI:IL

Question: Should the payment practices of Federal and Federal-State medical care programs be restructured to encourage the use and

acceptance of new health professionals who provide child and maternal

health services?

The Federal Government has been severely criticized for being hesitant

to pay for the services of new health professionals, even though it has been

the major supporter of programs to train such professionals for the past 9 years. Remedies for the present fragmentation in resource development and financing are being addressed by, for instance, the Rural Health Services Act of 1977, New or revised laws and regulations, however, are necessary to end this discrepancy in public policy planning. In additir--1 to achieving some measure of equilibrium in health policy, changes in current payment practices for the services of new health

professionals have functional advantages. New health professionals have been restricted in the provision of child and maternal health services by

the present payment policies of public and private payers, which tie payment for their services to physicians' services and physician supervi- sion. As a result of the complex regulations governing payment for health

services provided by new health professionals, particularly in noninstitutional settings, Federal and Federal-State medical care programs do not pay for many of the maternal and child health services new health

professionals provide. This policy applies equally to payment practices of private payers, which often replicate those of the Government Many

physicians are, therefore, reluctant to hire new health professionals or to make optimal use of their services. If barriers to payment are eliminated, both the cost-effectiveness of new health professionals and their attractive- ness as employees should increase. However, any cost savings from using new health professionals may not necessarily be passed on to the patient or the taxpayer by the employer. If the medical market becomes competitive, the employer of a new health professional will have a

785
competitive edge over other physicians and may choose to share his extra

profits in the form of lower fees. The payment mechanism can also be a practical way to promote the use

of new health professionals who provide child and maternal health

services in underserved areas. Lowering the barrier brought about by

current payment practices may bring more new health professionals to

inner-city and rural areas and may act as a restraint on the exodus of

physicians from rural areas_ Payment levels to physicians in rural

underserved areas are usually lower than elsewhere. The additional profit obtained by employing a new health professional may provide the

necessary stimulus to remain in the area. Paying for the child and maternal health services provided by new

health professionals has professional implications as well.The recognition

supplied by this action advances the position of the new health

professionals by advancing their autonomy. It may spur States to modify

restrictive practice acts which deter professionaii7Aden.

Opponents to liberalizing current payment practices for services

provided by new health professionals are most troubled by its implications

of an open-door policy for all providers. This policy need not be effected if

the merits of each type of provider are individually determined for

payment purposes. Increased Federal expenditures also alarm some critics. If new health

professionals had been paid at the same payment level as physicians,

Federal expenditures under Medicare and Medicaid would have increased

by about 0.1 percent in fiscal year 1979. If payment was at a lower level,

the increase in expenditures wouk, of course, have been lower. Total

health expenditures might be lower in the long run, if, for example, new

health professionals focus on preventive measures. A question concerning modifications in current payment practices is

whether payment for maternal and child health services provided by new

health professionals should be at the same level as those provided by

physicians. Much of the rationale for advocating a similar paymentfor the

same service duplicates that discussed earlier. In summary, the new health professional provides quality care, is accepted by patients and physicians,

is productive, is cost-effective, and improves access to care. Furthermore, a lower payment level (a higher one has not been

proposed) for maternal and child health services provided by new health

professionals would add complexity and cost to an already costly and

complex system. Costs associated with administering and implementing

two payment levels might offset the savings resulting from a reduced

payment leveL A lower payment level may not provide a sufficient incentive for

physicians to employ new health professionals and may create incentives

for physicians to perform tasks they could delegate in order to obtain the

higher payment. If Federal payments for services of new health profes- sionals were set at a lower level than for those of private insurers,

physicians would have an incentive to reduce their Federal patient load,

or to see only patients paid for by Federal and Federal-State medical care programs and leave other patients to the attention of new health

professionals.

786
Most significantly, two payment levels suggest a two-tiered system of care, which has profound psychological, sociological, economic, profes- sional, and political consequences. Proponents of a lower payment level for child and maternal health

services provided by new health professionals than those provided by

physicians believe that identical services cannot be provided by individu- als with different levels of training_ Others contend that if a service is delivered at an acceptable level it is the same service. Cost-savings obtained from employing a new health professional may benefit physi- cians only, and the patient or society at large. The physician may use the

extra monies the new health professional generates to increase his income or to maintain his current income and reduce his working time. Another question is whether payment for maternal and child health

services provided by new health professionals should be restricted to those who practice in underserved areas and with underserved populations. Limiting payment in this way would aid present efforts to attract providers to such areas and populations- and would decrease the burden

on Federal expenditures if universal payiients were provided. In a time of

limited funds, a modified payment structure for services to specific populations might be politically easier to achieve than a more comprehen- sive one.

Another aspect of this question is the rural and urban split_ Payment for

the service of new health professionals might be restricted to underserved

rural areas. The average Medicaid annual expenditure per child is $76 in

central city areas and $5 in rural areas, which creates a greater need in

rural areas. Rural practitioners have complained of payment levels as low

as one-seventeenth of urban practitioners' despite high rural electric rates, transportation costs, and the salary differentials needed to attract personnel. On the other hand, data on urban underserved areas are

included in localities with high reimbursement levels- Current data are county-based, which makes it impossible to prove there are lower

reimbursement levels in underserved areas of adequately served counties. In either case, new health professionals and society in general might be ill- served if payment depended on place of birth or place of practice_ In order

to maintain democratic standards, payment should be provided for a

service irrespective of where it is delivered. A third payment question is how much physician supervision should be

required for new health professionals? The only fact specific to this question which has not been discussed previously revolves around the quality of care. Close supervision may be needed to maintain high quality

and provide patients with assurance of the physician's involvement, but the evidence suggests that quality of care is not superior where close

supervision occurs.

Questions: Would restructuring the current system governing the legal practice of new health professionals who provide child and maternal health services promote their optimal use? How should changes be

effected? What changes should be made? The Federal Government does not have an active role in governing the

legal practice of new health professionals who provide child and maternal

787

() 6
health services, but maintains an interest because Federal programs that

pay for the services of new health professionals impose standards for

payment The payment practices of Medicaid (a Federal-State medical

care program) must be in accord with State laws. Although there are those

who advocate direct involvement of the Federal Government in the

credentialing process, it is most likely that the responsibility will remain

with the States, at least in the near future. Most experts agree that State laws and regulations governing the

practice of new health professionals who provide child and maternal

health services have been a major constraint on the practice of these

professionals. Indeed, the evidence on their past and current performance

is merely indicative and not conclusive due to the State provisions that link the practice of the new professionals to that of physicians. In

addition, the great variation in the specifics of the laws and regulations

among the States causes confusion about the rights of the new professionals, and limits their geographic' __mobility. The ambiguous language in

many of the practice statutes inhibits the delegation of t2nirs, because

physicians are concerned- with improper delegation and violation of the

law.

State rules and regulations vary in myriad other dimensions, including

the regulatory process, the regulation agency, specification of prohibited

and permitted activities, physician supervision, the degree of physician

supervision, aim). policies concerning prescribing and dispensing drugs.

In some States, certain categories of new health professionals are not

legally recognized for reimbursement A striking example of the restrictive

effects of this provision occurs in New York State, which has no

legislation or regulations governing nurse practitioners. The result is that

nurse practitioners cannot legally bill patients for any medical services

they provide to Medicaid recipients, thus lessening their attractiveness to

physicians as employees. Changes in current practices are necessary if the optimal use of new

health professionals is to be achieved. The method for bringing about such

changes, however, is not as evident as the need for reform. Resistance may

come from corapetin. g political interests within States and the medical

profession, which is usually consulted in the development of State laws

and regulations governing the practice of new health professionals.

A wide variety of opinion has been expressed about the preferred

method of public credentialing for new health professionals. Current state

practices include the licensure of new health professionals in the same

manner as physicians and nurses (e.g., the Child Health Associate in

Colorado), authorization amendments to nurse practice acts and medical

practice acts, and regulatory amendments to nurse and medical practice

acts_ If the current practices are to be modified, the comparative merits of

these methods are at issue.

The advocates of licensure note that it has traditionally afforded the

highest form of professional recognition and ensured the public of good

care. Opponents note it is extremely restrictive, does not necessarily

ensure high quality care, promotes high fees, and restricts innovation_

Authorization amendments, which permit supervisory physicians and

788
employers to determine the functions of the new health professionals, allow for flexibility in their utilization and place decisions regarding their use in the private sector. Regulatory amendments are now most often used by States. They give the States considerable control over the practice of

the new health professional through systems of precise laws and

regulations which some believe afford maximum protection against abuse. The content of State rules and regulations also affects new health

professionals who deliver child and maternal health services. The issue of physician supervision is one example. Services of Child Health Associates, who are licensed to practice in Colorado, must be provided under the

"direct and personal supervision" of a physician. On the other hand, only 11 States mention physician supervision of nurse practitioners, and the

supervision requirements for nurse midwives vary widely from State to State. In Connecticut they practice in "collaboration with and under the direction of a physician"; in Kentucky "in collaboration with a physi- cian"; in South Dakota no mention is made of physician supervision. How broad should the scope of practice be? Under some State laws nurse practitioners can perform medical diagnoses, treatment, and

prescribe and dispense drugs. Medical diagnosis and treatment is ill

defined in much of the current legislation. Prescribing and dispensing

drugs is particularly controversial; it hinges on the scientific qualifications of new health professionals and the need for this treatment modality, particularly in areas short of physicians. As many other issues arise concerning the content of rules and

regulations as variations exist in their content among the States. They

indicate the complexity of restructuring such laws and regulations despite

the need for clarification of the process that governs the practice of new

health professionals. Proposals for more radical changes in current credential practices

include relying solely on certification by other professionals, adoption of Federal licensing standards, integration of State licensing boards within a

single agency, and institutionalization of licensure.

Summary

Throughout the United States a growing number of new health

professionals are practicing, with varying kinds of training and experience. Many of these professionals are capable of meeting some of the health

care needs of women and children. However, because these professionals are relatively new and cannot be classified in the traditional terms of "doctor" or "nurse" their position vis-a-vis the health care system, the

legal system, and the general public is ambiguous. This paper provides a historical perspective on the development of these professions, followed by data on their current supply, distribution, training programs, and practice patterns. Next, information is presented on their professional competence and recognition and on the changing

social context in which they exist and function. Then the pivotal issue of continuing public support of new health

professionals who provide care to children and women of childbearing age

789
is scussed. Finally, alternative means of public support are considered.

No conclusions are drawn; instead, the focus is on sharpening the issues

for public debate.

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Physician Assistants and Nom Practitioners,' HRA Contract 230-77-0011. National Center for

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PublicLaw45-210.

(Z'29) Federal Regulations--Tides Chapter 4, Part 481 (general certifs' cation); Part 504 (nurse midwife

provisions) in Federal liesiorm, Friday. July 14, 1978.

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Ptsysician Amaisamts and Nurse Practitio- nets: HRA Contract 230-71-0011. National Center for

Eleahh Services Research. Department of Health. Education. and Welfare. Final Report. p.

151-152. January 1978.

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bearybad). (134) The Le of the State ofNew Mexico, 34th Legislature. bir Sesame. Home Bell 261, Approved

March 15. 1979, Section 59-18-19 NMSA 1978 (Laws 1%3. Chapter 286. Section 1. essettdod).

(135) Inssnasce Department, State atilt:1k Findings and Order File No. 78-36, April 27, 1979.

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Pbysicima Astiment Programs, p. 35.19731; IL K. Silver and J. E. Ott, "lbe Child Health Associate:

A New Health Proastional to Provider Comprehensive Health Care to Children." Pediatric, 51:

13-144Januiry 1973.

(13$) Burst. H. V. 'The American Canoga of Nurse-hradwives: A Profeasional Organic Lion," Journal of

Narse-Andwiliry 25: pp. 4-6. Jazsuary-Februery 1980.

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1979X 31-35.

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Pbyeician Assistants and Nuns Practitioners." HRA Contract 230-77-0011, National Center for

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Practitioner= Issue for the Mf07 . a staff paper of the Institute of Medicine. Wallington. D.C.

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and Appendix to Report. January 1978.

(143) The Journal of Nurso-hradwifery. Special Issue elation and Nurmaalwifery Practice in the

U.S." Summer 1976.

(144) American CoBegs of Nurse-Midwives, "Patterns of Legislation and Actual Practice of Nunsladradwifery a the United States."january 198D (mismogrsqthed).

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Health Services Researds. Department of Health, Education. and Welfare. Final Report p. 74.120.

January 1975

(150) Graduate Medical Education National Advisory Committee- bolsi= Report to the Secretory of

DffEW. Waal:krona, D.C.: Department of Haabh. Education. and Welfare, p. 257,1979.

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DREW. Waahington, D.C.: Department of Health. Education, and Welfare-. p. 156,1979.

(153) Scheffler. R_ M., S. G. Yoder. N. Weinfeld, and G. Ruby. "Physicians and New Health

Practitioners: lames for the 1980's," Incialry 16: p.4,, Fall 1979.

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(170) Public Law 631I-43.

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Ccesmissioes Policy Reader Session on Health Services, June 5. 1979.

797
NURSING

bY ICAmEnntiE B. Nucicou.s. R.N., Ph.D.1

INTRODUCTION

Nurses are a steady and eminently qualified pool of professionals for

the delivery of health services to women and children. Traditionally they

have been central to the delivery of these services and perhaps have more contact-iiith-patientsthan-any other single group of health professionals. Despite ,this, a general lack of understanding of the varying roles that

nurses_fill and the range of implications of educational differences within

the profession exists. The purpose of this paper is to examine these matters

as a basis for discussing the issues related to the provision of more

comprehemive health services to mothers and children- Approar;-..anately 1,400,000 registered nurses practice in the United States

and 62 pacent of these are employed in hospitals. About 8 percent work bcalth settings where a significant part of their work concerns

inaternalcluld-litigiltb.litolit nurses are -*bite; married -females, working for .salaries that compare poorly with salaries in less skilled and

less responsible male.dominated occupations. Although this profession is dominated by nurses who are diploma graduates of hospital schools, they are gradually being replaced by

graduates from associate degree and baccalaureate program:is, many of

whom seek advanced degrees. Although 30 percent of nurses are not working, the profession

represents a significant but underutilized resource. The range in levels of

training. and practice has placed nurses and the nursing profession in an

arabOlous position within the United States health care system. (See Tables I and 2.)

'Professor and Chairperson. Printery Cue. University of North Carolina, School of Nursing and

member of the Select Panel for the Promotion of Chad Health_

7&7

799
TAIL! 1. Olebibullon eir Nurses by Sex, Repo, Medial. and

lbasisyment Illatue--Nellanal 1077

allw/--

Number Percentege

To Alts with current liceneure

to practice in the United States 1,401,633 100.0

Female 1,344,642 96.1

Make 26,991 1.9

Racial or ethnic minority mom 62

Black 36,041 2.5

Hispanic 19,623 1.4

American Indian 2,803 0.2

Asian 29,434 2.1

Unreported 21,024 1.5

Married 1,009,176 72.0

Never married 196,228 14.0

Widowed or divorced 154,180 11.0

Actively employed 961,143 70.0

Mean eatery (Full time staff duty) $12,252 per year

°The flows varies =coming to region and lies Increased about 31,000.00elnoe 1977. Sources Moose, E. and Roth, A., "Nurse Power," American Journal of Nurafrig. October 1979 .

TAME 2. Comparison at 100 Percent Mole Job IfferlIng lialedes rem gesowyng

Melt Nunes Seleries In Denver, 1979

Morafftly Dollar

Owing Salary Differences

100 Percent -Mete

Job Claselliondlons 187$ 1979 1Mosillt Year

Sign Painter 1,245.00 1,361.00 297.00 3,564.00

Painter 1,068.00 1,191.00 127.00 1,524.00

Tree Trinen1W 1,040.00 1,164.00 100.00 1,200.00

Tire Servicemen 1,017.00 1,113.00 49.00 588.00

Parking Meter Repairmen 994.00 1.113.00 49.00 588.00

Graduate Nurse I

(Beginning Staf Nurse) 99.00 1,064.00

sorrow mm.1979.

HISTORY OF NURSING

The ambiguity of the current position of nurses and the nursing

profession is rooted in the history of the profession and women's rights. Nursing as a defined occupation in the United States is more than 100

years old.. The importance of nursing for the health of women and

children is reflected in the fact that the earliest formal train' ing programs were started by female physicians at the Women's Hospital in

Philadelphia and the New England Hospital for Women and Children in

Boston. However, the opening of hospital schools ofnursing in New York,
New Haven, and Boston marked the recognition of nursing as a distinct and more generalized occupation. Despite early attempts to formalize the training of a new group to

deliver health services, the training ofnurses remained largely apprentice- ship and was geared to the health problems of the times. These health

problems were predominantly acute illnesses, fever, infectious diseases, and trauma, which required intensive bedside care. Rooted in the

traditions of the church and military centers, apprenticeship training

instilled commitment to the institution and =questioning deference to

physicians despite the fact that nurses often made critical decisions and

performed medical services. As the one caretaker who was always there, the hospital nurse was summoned to substitute for every sort of absence or emergency from the lowliest housekeeping task to delivering babies, dispensing drugs, and administering anesthesia. Public health nursing was developed early in this century as a uzponse

to conditions in the major cities. Industrialization together with the influx of nearly 30 million immigrants between 1840 and 1910 spawned

tenements, filth, and major epidemics with concomitant high mortality

and morbidity. Lillian Wald's well-known Henry Street Settlement -established at the turn of the century. in New York provided clinical and

visiting nurse servicesmost of them to women and children. In addition, Wald began the first school nursing program in 1902. During September of that year, 10,567 children were sent home from New York City schools

for health reasons. One year later when the school nursing program was

introduced only 1,101 such absences occurred (1). In addition, Wald contracted with the Metropolitan Life Insurance Company to provide visiting nurse services to policyholders. Starting in

1901, the service grew rapidly and extended to other cities. By 1912, 589 Metropolitan__ Life Insurance- centers were in existence and insurance

records showed a 7-percent decline in mortality over a 7-year period

among the policyholders. The most significant decline was 19 percent among infants in the first year of life. Although the first service offered by the public health nurses was the

administration of bedside care, they soon moved to preventive care and teaching. In 1913, the Bureau of Child Hygiene was established in

Newark, New Jersey, and offered free well-child care. The centers were

staffed by graduate nurses who taught infant hygiene, health supervision, and proper care of infants. By 1915, despite poor living conditions, the

infant mortality rate in the areas serviced by the clinics was significantly lower than in other areas of the city. The nursing staff was thereafter

increased to 12 nurses and served half the city with the backing of only 4

half-time physicians. The public health nursing movement grew rapidly

and by 1919 nearly 9,000 nurses were engaged in visiting or public health

nursing in the country (1). During the 1920's the duties of the public health nurse included the

management of predominantly publicly sponsored infant welfare stations, investigation of home conditions that affected infant mortality, casefinding, and investigation of communicable disease. Privately sponsored

visiting nurse associations continued to provide bedside care.

7!) 801
The multiplicity of activities and the increase in public health nursing

agencies sometimes were met with antagonism by physicians who

perceived them as infringements on their territory. The history of public

health legislation in the 1920's reflects the growing conflict between the

public health movement and the American medical establishment. The

Sheppard Towner Act of 1921 was passed despite opposition from the

American Medical Association and resulted in the establishment of the

Children's Bureau. However, the Biggs Health Center Bill to provide State

aid to local communities for public health nurses, physical examination,

and school health services was defeated because of similar opposition (2).

During the Sheppard Towner Act, child health agencies existed in 45

States and Hawaii. From 1923 to 1929, public health nurses made more

than 3,000,000 visits to mothers and 4,000,000 infants received their

services. The infant death rate fell from 100 per 1,000 in 1915 to 69 per

1,000 in 1928. Despite these advances, however, efforts to renew the Act

were defeated in 1929 as a result of political conservatism and continued

opposition from the American Medical Association (1). In 1933, as a response to the critical needs engendered by the

Depression, the Federal Relief Administration, the Civil Works Administration, and the Children's Bureau separately launched a series of State

and local nursing programs that met the needs of unemployed nurses and

at the same time provided sorely needed community services. The Social

Security Act of 1935 further involved the Government in the provision of

both health services and the training of health personnel and has

continued this policy to the present.

NURSING EDUCATION AND CAREER

DEVELOPMENT

The work of public health nurses required special types of training

beyond the therapeutic principles taught in hospitals and included course

work in sociological and economic conditions and cultural beliefs of

patient populations. Initially, such training was received in-service.

However, by 1916 approximately eight colleges or universities offered

these courses. Although nursing was perceived as a low-status occupation, early

training programs attracted many women with impressive ability who

provided leadership in the development of nursing as a profession.

In 1919, the Goldmark Committee, established by the Rockefeller

Foundation to study nursing education, recommended steps that would

"professionalize" nursing. These recommendations included special training beyond the basic nursing program for all supervisors, instructors, and

public health nurses; the development of university schools of nursing and

the development of training programs for subsidiary workers; and

legislation to define, regulate, and license such subsidiary workers.

By 1925, 25 colleges or universities had schools or acperttnents of

nursing. The early university programs were developed in revonse to the

Gokimark report to prepare diploma nurses for public health nursing,

802
supervision, and teaching. All basic training in nursing was offered in

hospital schools of nursing where nursing students were perceived as a

source of cheap labor. By 1927 registration in nursing programs peaked, which created a of nurses. The Depression that followed left many

nurses without 11111 le wIlt and the number who enrolled in both training programs and hospital schools rapidly declined. World War II created a great demand for nurses which continued into

the mid-1940's when a severe shortage of both physicians and nurses occuered. This shortage was created by a combination of factors. Antatiotics and the new post-war technology coupled with hospital

insurance had changed the spectrum of health and illness, of the care

required, and of the personnel needed. Until the. -introduction of sulfa drugs in the 1930's the possibilities for medical intervention were limited. For many illnesses, nursing care was critical. In the post-war era of new technology, drugs, and knowledge, physicians were able to work relatively independently of nurses, and their contribution to the outcome of illness suddenly diminished. Bedside care became less important to the public, to physicians, and to nurses. Growing

job dissatisfaction and increases in alternative employment opportunities

led-to declines in the number of hospital-employed nurses and in student enrollment. At the same time, a more affluent and informed public was demanding more and better health services. Efforts to set and maintain standards in nursing education were first

initiated in 1917 by the National League for Nursing Education, and, with

the restructuring of other national nursing organizations in 1950, the League became the accepted accrediting body. As standards for curriculum and faculty improved, hospital administrators increasingly found the diploma schools a financial liability and one by one they were dosed. In 1927;- 2,000 hospital- training programs existed and only 367 were

functioning by 1977 (I). Their place was partly taken by baccalaureate programs designed to provide basic nursing education rather than

advanced preparation for teaching and supervision. These baccalaureate programs, however, did include training in public health nursing in their curricula. The shortage of nurses became increasingly acute as the numbers of hospitalized patients increased with the availability of hospital insurance. In an effort to meet this demand, 2-year terminal associate degree programs were developed in junior and community colleges and

admissions to these programs quickly exceeded both diploma and

imiversity level programs. Nurses with associate degrees were originally

conceived of as technical nurses whose tasks were delegated by nurses with baccalaureate degrees. Baccalaureate degree nurses were responsible

for care planning and for the psychosocial aspects of care. In practice this differentiation of roles did not occur.

By 1971, little difference was found in the functions of associate degree nurses, diploma nurses, and bachelor's degree nurses within the hospital setting (3) and by 1977, "the original conceptualization of the associate degree as both technical and terminal [was] to all intents and purposes abandoned" (4). Furthermore, the lack of provision for career mobility for associate degree and diploma nurses was causing serious problems. By

801 803
1977, 7 percent of associate degree nurses had advanced to further

training in bachelor's degree programs, although they encountered

considerable difficulty in the process. Bachelor's degree programs had

increased to 349 and associate degree programs had increased to 656. The

trend toward the education of nurses in institutions of higher learning has

continued, as have the efforts to standardize credentials based on the level

of education and specialty. A 1965 position paper issued by the American Nurses' Association

stated, "The education for all those who are licensed to practice nursing

should take place in institutions of higher learning; minimum preparation

for beginning professional nursing practice should be baccalaureate

degree; minimum preparation for beginning technical nursing should be

an associate degree" (5). In 1978, the Association set two goals: the

naming and describing of two levels of nursing practice by 1980 and the

implementation of the classification based on credentials by 1985. Implicit

in these resolutions were different career entry credentials both for the

nurse with the bachelor's degree and the nurse with less than a bachelor's

degree (6). A third resolution passed at the 1978 convention specifically

called for career mobility within the profession. This led to the first

concerted effort on the part of the baccalaureate programs to facilitate the

acquisition of Bachelor of Science in Nursing degrees by bachelor's and

associate degree nurses.

PROBLEMS IN EDUCATION AND UTILIZATION

OF NURSES

Problems in the systems of nursing education and employment are

related to the strivings of the profession, the legitimate requirements of the

universities and accrediting agencies, and the lack of coordination

between nursing educators, nursing and hospital administrators, and

physicians. Before World War II physicians taught medical science in almost all

schools of nursing. As more nurses became qualified for faculty appointments, fewer physicians were asked to teach nurses. By 1960, the National

League for Nursing actively discouraged the involvement of physicians in

nursing education. It was believed that nurses who qualified for faculty

positions should be able to teach all the medical courses necessary for the

practice of nursing. These efforts to establish nursing as a profession, the reduction in

clinical experience in the baccalaureate and associate degree programs,

and the rise of classroom learning have had a deleterious impact on the

relationship between nursing and medicine. By 1965 health manpower and training to meet the increased needs of

the public were critically short of the demand. Nursing and medicine were

hardly communicating with each other and each profession independently

began to develop new types of education programs to prepare persons to

fill the breach.

804 Ll 9
Clinical Nurse Specialists, Physicians' Assistants, and Nurse Practitioners

Master's programs i -,ft began to emphasize preparation in the

clinical specialities re x= "tr. in teaching, supervision, and nursing

service administration. iliaiSe specialists were prepared to use advanced theoretical Lnowiedge to help nursing service personnel to better assess and meet patient and family needs. Unfortunately these nurses met with difficulty. They often lacked adequate hospital experience and were unprepared to cope with the bureaucracy and problems of management Because they were employed in staff rather than line positions, they had no authority in the hospital hierarchy. Furthermore, their efforts to initiate changes to improve patient care were often

perceived as threatening to the power of entrenched nursing acirninictrators which created a rift between nursing service and nursing education

personnel. In addition, physicians were not prepared either to have their orders questioned or to condone alternative methods of care. These difficulties might have been minimized if nursing administrators and physicians had participated more in planning for the education and

employment of clinical specialists. Although programmatic changes have alleviated some of the problems, acceptance of the role on the part of physicians and hospital administrators has been slow. Currently many of

the large hospitals employ clinical specialists and find them effective. Regrettably, however, many hospital acirninictrators continue to regard

them as unnecessary and expensive frills. While the nursing profession was attempting to upgrade its contribution

to the health services, physicians were attempting to cope with the health

care crisis by training nurses to perform some of their functions. In 1965, Loretta Ford and Henry Silver started the first pediatric nurse practitioner program. The movement caught on quickly and nurses soon demonstrated

that they could not only take medical histories, do a physical examination, and manage well-child care, but they could also manage minor acute

illnesses and stabilize chronic illnesses. Soon such responsibilities were

extended to adult care, and in 1970 a Family Nurse Practitioner Program

was started at the University of North Carolina at Chapel Hill. Initially, practitioner programs were begun under the aegis of private physicians or medical schools. Most of the early programs recruited diploma graduates with considerable experience and did not offer academic credit The curriculum was developed and taught by physicians and focused largely on physical diagnosis and the management of minor

illness. Applicants were generally required to have a physician as a

sponsor who would serve as preceptor and guarantee employment when

the program was completed. In rural areas, where physician shortages existed, an effort developed to

recruit nurses who would return to these areas. The nurses selected were

leaders, nonconformists, and risk takers. These nurses did well in

undertaking their new roles; patient acceptance was excellent, and

physicians working with nurse practitioners became enthusiastic supporters.

805

C.1
Ma rt., nurse educators took a dim view of the practitioner mov .ment.

At the 1970 American Medical Association meeting. the announcement

that 10,000 nurses would be trained as physicians' assistants met with

resentment by the nursing establishment Nurses had barely achieved

professional status and they objected to both the title and the concept of

being "physicians' assistants." Nevertheless, nurses flocked to the programs. To the associate degree or

diploma nurse who would have difficulty in obtaining a baccalaureate

degree, the program offered not only education but also a chance to

improve her status. For nurses at all levels it provided medical content

necessary for effective practice that the basic nursing programs lacked.

The role also offered increased autonomy and an escape from the grinding

rotating shifts of the hospital. In 1968, the Division of Nursing in the Department of Health,

Education, and Welfare funded some expanded role training programs on

an experimental basis and in 1975 under the Nurse Training Act, a special

section of the Division was assigned to nurse practitioner training. The

guidelines for such training specified physician participation in training

programs (preferably as codirector), affiliation with schools of nursing. or

at least a qualified nurse as codirector, and set the standards for

acceptable program length and amount of clinical practice.

Despite the initial reluctance of nurse educators to accept the concept of

nurse practitioner, graduate programs began to include this training

because they were partly attracted to grants and to commitment to the

idea.

In 1970, Yale University began the first program to prepare pediatric

nurse practitioners at the master's degree level. In 1977.61 master's degree

programs were offered to nurse practitioners and certificate programs

began to decrease. Acceptance of nurse practitioner programs at the master's degree level

has led to changes in undergraduate curricula. Increasingly, training in

complete physical assessment of the patient is being included in

baccalaureate programs, and the stethoscope has replaced the cap as a

badge of office. (For a more complete discussion of the status of nurse

practitioners and nurse midwives, please see "New Health Professionals in

Child and Maternal Health" in this series.)

The foregoing developments have posed problems for nursing faculties

who must incorporate these new skills into their teaching. A growing

concern has surfaced among nurse educators that they are not receiving

sufficient ongoing clinical experience to adequately teach or to maintain

basic skills. The current system, however, almost excludes nurse educators

from clinical practice. Ideally, they should have the same access to clinical

practice as physician faculty members in medical schools, which means

that they should also have hospital appointments.

Although joint appointments have been established for nurse educators

in some large medical centers, this procedure is rare for both administrative and fiscal reasons. The hospitals are autonomous and current billing

procedures do not permit third party reimbursement for nursing services

of even the most advanced kind.
Understandably, nursing schools are reluctant to release faculty members for patient care without reimbursement either from the hospital or through direct billing of the patient. Another hurdle to overcome in nursing education is the development of faculties that can meet academic standards. As noted previously, the first nurse educators were diploma graduates who received advanced training

in teaching at the baccalaureate level. As the baccalaureate programs were developed to provide basic education for nurses, the master's degree programs ware developed to prepare teachers and administrators, and a master's degree became the accepted credential for teaching in university

schools of nursing. During the seventies the profession again sought to

improve the status of both its practitioners and educators. The master's degree programs began to focus on the preparation of clinical specialists, and the larger university schools have begun to require that their nursing

faculty have doctorates. In 1920, Columbia University offered the first doctorate program

specifically for nursing, and by 1976, 14 programs were in existence. These were supported at first by predoctoral research fellowships and Ereter by the Nurse Scientist Program which heavily subsidized the

teaching programs of the related disciplines and made it financially

attractive for teaching institutions to enroll nurses. The first nurses to earn doctorates did so primarily in the fields of education and were primarily

concerned with providing academic leadership and improving nursing

training and service. Thereafter, an increasing number sought doctorates

in other fields, especially in the social sciences and in public health. In the

late seventies, a markedly increased number of doctoral programs were offered in schools of nursing that emphasized the development of a body

of nursing knowledge with its own theoretical base. Table 3 shows the distribution of the various levels of educational

attainment among nurses in the United States in 19'77. The nurse doctoral survey conducted in 1979-80 by the American Nurses Association identified approximately 3,000 nurses with doctorates

TABLE 3- Ti e Disiribullon of Educational Lavoie of Nurses

In Ow United Illeales in 1977

Nundser Percentage

Diploma 939,094 67.0

Associate Degree 154,180 11.0

Bac:calaureate 245,286 17.5

Masters Degree or Doctorate 63,073 4.5

Total 1,401,633 100.0

REGIONAL PLANNING AND HOSPITAL NURSING

In 1971, the American Medical Association recommended the

development of regionalized hospital-based newborn intensive care units

0 s 5 807
(NBICL1). and a later committee representing several physicians'

associations identified three levels of perinatal care within regions (8).

In the level I or community hospitals. the number of deliveries is too

small either to justify expensive and complex obstetric and newborn care

or to attract the necessary medical and nursing staff. In urban areas, such

services are or ideally should be consolidated in one or two hospitals.

Level II hospitals, or the larger urban and suburban hospitals where the

majority of deliveries occur, ideally provide a full range of services for

uncomplicated procedures and for the majority of complicated obstetrical

problems and certain neonatal illnesses. Level III hospitals provide

consulting services to other hospitals and take referrals of complicated

cases. Such hospitals are often, but not always, large university medical

centers.

Although recommendations for services for older children have not

been similarly regionalized, the same typology can be applied to pediatric

care. Level I community hospitals may have so few pediatric patients that

children are admitted to roc ms within adult care units. In urban areas

with several hospitals, pediaL is facilities are often centralized in one

institution and level III hospitals offer the most sophisticated pediatric

care.

Nurses at level I medical units may have limited training in obstetrical

or pediatric care and because of low census have little opportunity to

maintain or improve their practice in these fields despite the continuing

need for such skills. In level II hospitals, it is recommended that the

nursing supervisor of maternal and child services have an advanced

degree in obstetric or neonatal nursing, and that at least some of the

professional nurses be nurse clinicians or clinical nurse specialists.

Because of the shortage of nurses with advanced degrees, these standards

will frequently be difficult to meet. The level III hospitals will have a higher proportion of nurses with

bachelor's degrees. Nurse supervisors or clinical coordinators are more

likely to hold master's degrees and the director of nursing is almost certain

to have a master's degree and sometimes a doctorate. In such a staff a

reasonable probability of finding clinical specialists and nurse clinicians

exists.

Changing Roles of Hospital Nurses

Whether in effect or at the planning stages, the nursing staff needs of

hospitals today are vastly different from what they formerly were. New

technologies and complex procedures, the number and variety of medical

specialists providing services for the individual patient, and the large

number of staff persons and patients within a single hospital require new

kinds of nursing specialists. At the end of the professional spectrum, the roles and responsibilities of

the nurse administrator may include planning for future needs, coordination of nursing with other hospital services, and constant crisis intervention in addition to the daily management of a service employing hundreds

of personnel with a multimillion dollar budget.

808 SLIG

assessment and screening procedures. This trend toward providing

comprehensive primary care in health departments sometimes meets with

consaderable resistance from private physicians, although in some

communities it is well accepted.

School Nursing

The degree of involvement of school nurses with students and faculty

varies across the country. In some instances, the school nurse is the

dispenser of bandaids and the keeper of health records. In other instances,

the school nurse serves as a health educator, student health counselor, and

as consultant to staff and faculty in developing health policy.

In some areas, she is paid by the Board of Education, and in other

areas, contracts between the Board of Education and the Board ofHealth

provide for full- or part-time nursing services for the schools. If paid by

the Board of Education, the nurse is more likely to receive the cooperation

of other school staff and faculty, but will be less likely to have the peer

support of health department nurses.

Since 1950, the number of nurses employed by the Board of Education

has increased sharply; in 1978, over 41,365 nurses reported school nursing

as their principal employment. In 1978, the American Nurses' Association appointed a commission to

conduct hearings nn the unmet health needs of children and youth in

Boston, Atlanta, Los Angeles, Chicago, and Washington, D.C. The major

problems identified were venereal diseases and teenage pregnancy, drug

abuse, child abuse and sexual exploitation, suicide, physical fitness and

accidents, dental problems, nutritional deficiency, developmental disabilities, and chronic disease. In most cases, the school nurse is in the best position to identify or help

the teachers identify children with these problems and to assist the child

and family in solving them. Educational opportunities to all handicapped

children were generated with the passage of P.L. 94-142 and the role of

the school nurse and the need for preparation in both public health and

pediatrics became more acute. In some communities, school nurse

practitioners have been introduced. A study in Denver in 1972 (10)

comparing nurse practitioners with regular school nurses noted that nurse

practitioners focused more sharply and specifically in their management

of pupils' health problems; excluded only about half as many pupils from

school; referred about half as many pupils for consultations, care, or

further evaluation because their management plans resolved the probkms; and were more likely to provide specific advice to parents, resulting

in more frequent compliance with the school nurse practitioner's recommendations.

In some areas physicians have opposed employing nurse practitioners in

schools. Nevertheless, the school nurse practitioner demonstrates expanded skills in physical assessment, added knowledge of well-child care, and

810

s s
ability to identify and assess factors that may cause learning or behavior problems as well as those causing physical disease.

Neighborhood Health Clinics

Ccnnprc-: --naive neighborhood health clinics, which started as demonstration projects by the Off ce of Economic Opportunity in the mid-1960's, have been another out-of-hospital source of health care for children and

have served to augment public health and hospital-based clinics in inner city areas. From the outset, they have relied heavily on nurse practitioners for delivery of services.

Rural Health Services

Rural health services, always scant at best, have decreased with the demise of the family doctor, and despite improved roads in most areas accessibility and use of preventive health services have not improved. The Frontier Nursing Service, which began in 1925, has demonstrated the impact that nursing ire can have on rural health problems. However, it has recently been observed that with a decline in the number of preventive home visits by nurses from Frontier Nursing Service because of cost, visits to rural health nursing clinics have also decreased.. Medicaid does not pay for preventive visits, therefore many people will wait until they are ill rather than pay out-of-pocket for preventive visitsespecially if the clinic is more than 5 miles away.2

In the 1970's, rural clinics began under the Division of Indian Health Service the Appalachian Regional Development Act, and the Migrant Health Act. These cli nics, more than the neighborhood health centers, have relied on nurse practitioners to deliver care. In urban health centers physicians are usually available to support the nurse practitioner; however, in rural clinics, nurses may work alone with only telephone

contact and a weekly visit from a physician. Efforts to scale and retain physicians in rural areas have had limited effectiveness. The areas may not be attractive for setting up practice because income, social life, and educational opportunities are limited. Public health services in these areas are also limited.

in such states the public health agency is often dominated by the

state medical society which tends to inhibit extension ofgovernmen- tal programs. Many of the rural health departmentsr moreover are directed by semi-retired physicians who are seeking an easier life and

are not inclined to move out and blaze new trans for public health

improvements (11).

2Pessonal coronnwication with G. Isaacs, January 6, 1980.

811
TAMILE 4. Rego of iftwares to Polaa "WIMP

Set of 10

ellaiss by Public Public Health

Parcentaga Mal& Niurase/100,000

Rural Population Nurses Population

11.4 to 25.1 75,247,000 16,441 21.4

25.5 to 33.4 50.821,000 8,827 7.4

34.3 to 41_7 24,940,000 3,563 14.3

432 to 52.5 23,091,000 2,981 12.9

55.5 to 64.8 18,735,000 2,217 11.7

SOURCE: American Nurses Association: Faces About Minting, Now York.

19611.

Thus the burden shall continue to fall on nursing to fill the gaps. Even

then the supply of public health nurses and practitioners falls short of the

need. Table 4 demonstrates that in the most rural States the ratio of nurses

to population is almost half of that in most urban States.

Physicians' Offices

In a physician's office the role of the nurse varies and may range from

that of receptionist to practice coordinator to nurse practitioner who

advises patients and performs both nursing and medical services. The

function of the nurse depends on the perceived needs of the individual

physician. In some instances nurses are hired on the basis of suitability

and attractiveness because Some physicians do not realize that a wellprepared nurse could contribute to the practice. For nurses, work in

private practice is attractive because of the regular working hours.

However, because of their isolation, little opportunity exists for professional growth. About 14 percent of nurse practitioners are employed by private

physicians (12) and arc usually salaried. In some instances when a nurse is

a member of an incorporated practice, her income is a share of the

practice. Practice arrangements and assignments of patients also vary

among practices. At times she has her own group of patients that she

manages except when she refers them to care.

Nurses in Health Maintenance Organizations (HMO's)

Within health management organizations the role of the nurse may be

more clearly defined so that her nursing skills are better utilized. The

HMO's often have both nurses and nurse practitioners on their staff.

Day Care Centers

Standard employment or utilization of nurses or other health practitioners in day care centers across the country does not exist. A survey of 52

812 Sl 0
licensed day care centers in Berkeley, California, found that over a third

of the centers lacked a designated health coordinator, one-quarter lacked written health guidelines, and almost one-half lacked nutrition education

services (13)- In this survey it was also reported that "a large majority of yang children in current day care centers come from underpin 'vileged

families and probably are in need of adequate health services." In

addition, many federally funded day care centers are now enrolling

handicapped children, and staff members are frequently ill prepared to deal with healthy children as well as handicapped children. Some

supervision may be provided by public health muses but this is usually

incidental to their total care load.

A few nurses have taken on roles as consultant health providers to all or part of the day care centers in a community. These nurses are able to

recognize developmental delays or incipient problems and work with

parents to provide the proper care. They counsel day care staff on the management of behavior problems and make decisions regarding mothers calling for sick children to take them home. They can identify nutritional problems, provide preventive services, and may make home visits to

counsel parents. The role of nurses in day care centers has not yet been fully tested, but their potenal for effective screening and health maintenance is great Most nurses who have undertaken the day care consultant role are

pediatric nurse practitioners with master's degrees. The need for well- prepared persons in this field is great. However, the obstacles to such a

service are reimbursement and shortage of qualified nurses.

Chronically III and Ilsoadicapped Children

The needs of the chronically ill and handicapped child are unique, and

they arc very often not met in the current health care delivery system. The

special needs of an individual patient may be addressed by medical specialists separately but often a lack of communication between these

specialists regarding a single patient occurs. In many instances the nurse practitioner is the most qualified and logical person to coordinate services of all kinds for the handicapped child. When working in specialized clinics that care for children with these conditions, nurse practitioners serve as coordinators of medical care as well as providers of primary care. They run parent groups, counsel adolescents, and teach nursing and medical students. They make home visits and serve as links between hospital and community and perform

special services. In one spina bifida clinic the days in hospital for the total patient group were significantly reduced when a pediatric nurse practitioner-clinical specialist was in charge of the clinic. Nurse specialists have done genetic counseling in birth defect clinics and provided counseling for parents of chronically in and handicapped

children. Pediatric nurse oncologists have also demonstrated their value in

caring for children with cancer and bridging the gap between home and

hospital_

813
Juvenile Justice System

Despite the fact that many children in the juvenile justice system may

have suffered abuse or sexual exploitation, may be drug or alcohol

abusers, have venereal diseases, lack immumz' ations, and have auditory

and visual problems and learning disabilities, they are frequently almost

totally deprived of health supervision except in cases of emergency. In one

such center in North Carolina, a pediatric nurse practitioner-clinical

specialist with a particular interest in adolescents provides health care,

performs total health assessments including physicals, and develops

management plans including followup and long-term tracking

Community Nursing Clinical Specialist

The care provided at the community level previously described has

usually focused on segments ofthe population that come to the center or

clinic. Outreach into the community from such centers is currently very

limited. Formerly the public health nurse performed both services. In 1974

Sheps wrote: it is difficult to find an official or unofficial health agency which

is clearly taking on the task of monitoring, protecting and restoring

the health of the population; it is not a simple matter to find one that

is placing proper emphasis on prevention, and reflects in its

program, the understanding that there are major forces in the way

people live that affect their health. These are the problems which

public health must address in the future by encompassing the whole

area of environment, patterns of living, and opportunities for the full

development of human beings both physically and mentally.

To achieve such objectives public health services must be integrated

with personal health services. Practitioners must be trained to think on

two levels and address both individual and aggregate needs.

The skills necessary to deal with aggregates, particularly multiple

aggregates, are different from those needed for clinical practice.

Although some persons may be prepared to function effectively at

both levels, it is questionable how realistic such an expectation could

be. In the past, failure to recognize this distinction has led to neglect

or merely superficial development of skills for dealing with decisionmaking at the aggregate leveL Learning these skills is as demanding

and time-consuming as developing advanced clinical skills. Therefore, within service settings, it seems reasonable to have both types

of skills represented on the staff (I4).

This situation requires preparation at the master's and doctoral levels of

two complimentary groups of nurses:

Direct care practitioners, who are specialized in the care of

families and children, with some basic training in aggregate level

skills and planning Public health nurse specialists with training in aggregate analysis

and policy development with some basic clinical skills

814 S10
Nursing Research

A significant amount of research in nursing practice is a recent development, which has been fostered by the grants program in nursing

research of the U.S. Public Health Service Division of Nursing. This organization was established in 1956 and was spurred by commitment and

recognition on the part of the nursing profession that only through the

development of a scientific base for practice can the professional image of

nursing be enhanced_ Nursing care cannot be improved until scientific accountability becomes as much a part of nursing's tradition as humanitarianism is.

As nursing moves ever more rapidly into its rightful place in health care delivery, as nurses take an increasing responsibility and

authority for patient care .. _ the demand for proof of our contributions will become more and more severe ( 1 5) . Nurses have developed and implemented innovative approaches to patient care and support, and not surprisingly have researched the

effectiveness of these new procedures or programs. In the maternal and

child health field they include, among others, the effectiveness of prenatal

and "parenting" education, family centered nursing, breastfeeding, new- born intensive care procedures, preparation of hospitalized children to

cope with frightening or painful procedures, and nutrition of hospitalized

children. Priorities for nursing research can be classified into five major

categories: (1) theory development to explain differences in the processes

and outcomes of care; (2) studies of the impact of the provider process on

health status; (3) studies of orgini'*tional models of health care delivery

and their relationship to the process of care; (4) questions concerning the

cost benefit, productivity, and reimbursement of systems of care; and (5)

the relationship of curriculum in nursing education to the needs of the

delivery systems for maternal and child health.

NURSES AND THE PERCEIVED NEEDS

WITHIN THE HEALTH DELIVERY SYSTEM

The term "primary care" first appeared in the literature in the late

1960's to describe a void in personal health services caused by increasing

specialization and the disappearance of the family doctor. The term has

been defined by the Department of Primary Care at the University of

North Carolina School of Nursing as follows: Primary Care is a range of services delivered for the most part in

ambulatory and home settings to meet the majority of needs for personal health care of individuals and groups. It focuses upon the

assessment of health status, the prevention of diseases and disabilities, and maintenance of health. Clients are assisted in the management of significant life events, minor illnesses, chronic diseases, and

nonspecific symptomatic complaints, with referral for specialty care

as needed_

815
Contemporary nurses, especially those with bachelor's degrees and

training as nurse practitioners, are ideally suited to provide primary care as well as community and outreach services. Nevertheless, barriers to

broadening their participation in both primary care and public health

services exist These barriers arc both overt and covert, are sometimes related to

nurses and their roles vis-a-vis physicians, but most of these barriers are

related to power, control, and reimbursement Although some of these perceptions are changing, the bathers remain, and those that pervade the

field of nursing in general also pervade the maternal and child health field.

IssueCareer Entry Requirements and CredentiaLs

In 1978, the American Nurses' Association resolved that as of 1985, the bachelor's degree will be a requirement for entry into professional practice. Associate degree and diploma graduates would be termed

"technical nurses." This dual credentialing is in accord with historical attempts to professionalize nursing, but because it presumes two levels of

licensure and employment, it will be difficult to implement Associate degree and diploma nurses have opposed this dual system for fear that they will be -disenfranchised. At the same time many of them

have applied for or entered bachelor's degree programs. For the older diploma nurse with an established family, the system has created problems

related to career development and the difficulties of returning to school to

acquire the requisite degrees. A number of States have sponsored outreach

programs to enable these women to upgrade their professional status. Two different cate-Aones of practice must evolve, and until they are made clear through public statements and other means, confusion will continue regarding the competence of nurses. With the clarification of the different levels of nursing to the public and within the medical professsion, some method must be devised to ensure the competence of professional nurses as they increase the performance of new methods of health

promotion as well as the duties that were once the exclusive purview of physicians. The existence of multiple kinds of basic nursing education programs

leading to licensure has created tremendous confusion regarding minimal preparation necessary to assure the safe and effective practice of nursing (16).

IssueThe Funding of Nursing Education

The recommendation to make the bachelor's degree a requirement for entry into practice will require the development of programs to upgrade associate degree and diploma nurses. Although the number of schools offering RN/BSN (registered nurse/bachelor's of nursing science) pro- grams is increasing, the demand for admission already exceeds the

available openings, and as noted previously the lack of the higher degrees presents a formidable barrier to career mobility. In addition, if program

816
funding is provided for nondegree certificate programs for nurse midwives and nurse practitioners, every effort should be made to arrange academic

credit for the labor.

Although it might be argued that enough registered nurses exist, the need for more nurses with master's and doctoral degrees is critical in some

parts of the country. The number of nurses with postgraduate degrees is currently insufficient to provide the leadership and research needs within

the profession.

IssueAccess to Clinical Experience

Nursing administrators, educators, and students do not have sufficient access to clinical experience, especially in obstetrics and pediatrics. The

competition from medical students and physicians for space and accessi- bility to patients is keen. Medical faculties who control medical center

facilities logically give preference to medical students and physicians. The

result is that nursing students often find themselves traveling as far as 100 miles a day for clinical experience. When nursing programs can pay for cliniCal experience, they can often find it However, the system is at present inequitable, and steps should be taken to provide nurses and

nursing students with greater access to patients and practice.

Issue--Credentialing and Licensing

Because of the development of new categories of health care profession- als and their accompanying role realignment, established systems of ca-edentialing and licensing have become outmoded and inadequate to meet current needs.

The credential issues of particular concern to nursing at the present

time include the development of new State practice acts and certification

for specialty practice. Because of the overlap between nursing and medicine, both the licensing and certification procedures for nurses are of concern to physicians. To make licensing procedures responsive to innovations in health

promotion and maintenance, it has been recommended that: Licensing board membership should be diversified. Public members need to be appointed in sufficient numbers to have real impact on board decisions. Members of health professions other than those

licensed by the board should be appointed to all health licensing boards. (This latter feature often is imposed on less influential professions, es, placing physicians on nursing boards, but should

also work the other way, placing nurses, podiatrists and others on

physician licensing boards.) The result of diversification should be a balance of power preventing both undue restrictions and expansions by the profession. For mid-level health professions with rapidly changing roles in the health system, the law should incorporate institutional definitions of scope of practice for expanded role duties. One should distinguish

817
carefully the use of a general delegatory statute, where the scope is

up to the supervisor, from an institutional statute (17).

This latter term, "institutional statute," refers to the employing

institution- It would be better changed to an agency or board such as a

State practice committee. Such a committee should have equal representation from medicine, nursing and health administrators. It should be

autonomous and have the power to make decisions without ramification

by interested professional associations. The result would be legal recognition of innovation without the necessity of repeated and cumbersome

legislative revision_ Traditional licensing procedures have focused on "inputs" of both

institutions and education of persons under consideration for licensing.

Such inputs included experience, training, and performance evaluations.

However, with the rapid changes in the health manpower field, it might be

more realistic to measure output or outcome. Existing nongovernmental approaches to monitoring the quality

of health practitioners should be integrated into the healing arts

licensing activity. For example ... performance evaluation by

hospital review committees, third party review mechanisms and

publicly accountable review committees. . . As health licensure

becomes more flexible and innovative, 'output' oriented quality

control becomes imperative to supplement the 'input' orientation of

traditional licensure (17).

IssueWho Will Control Nursing Practice?

This question, although inextricably enmeshed in the issues of credentialing and financial reimbursement (see below), is of such importance as

to warrant examination as a separate issue. The issue includes consideration of the territoriality and the scope of nursing practice, the independent practice of nursing and, most importantly, the consumer's right to

access of information and choice of care providers.

Significant areas overlap between the practices of medicine and nursing.

With the expanded technological developments in medicine, many of the

procedures formerly defined as the sole prerogative of physicians have

been delegated to nursing. These procedures include the use of the

thermometer, the taking of blood pressure, and more recently the

administration of injections_ In the 1950's much discussion focused on

whether nurses should begin administering intravenous fluids.

Conversely many functions that were within the purview of nursing

have been assumed by medicine. The most notable, of course, is

midwifery. In the early part of this century, it was recognized by

physicians that they probably caused more deaths in childbirth than

midwives did. Ironically, this realization caused them to upgrade their

obstetrical practice and virtually drive out midwifery as a separate

profession. In 1912, J. Whitridge Williams, professor of obstetrics atJohns

Hopkins Medical School, wrote: If it appears necessary to reform anything, here is the opportunity.

Why bother with the relatively innocuous midwife when the ignorant

818

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are willing to pay for them out of pocket.

IssueConsumer's Right to Choose Type of Health

Care Provider and Individual Practitioner

The consumer movement in health care together with an increased

public awareness and sensitivity to health issues as well as dissatisfaction

with medical treatment and resources has led many to seek unconventional treatment such as the recent case involving a child with leukemia.

Much of this dissatisfaction is caused by the depersonalized care in

hospitals, clinics, and sometimes physicians' offices. The depersonalization of hospital health care, as a result of increased specialization of

physicians, and the complexity of hospital procedures and intense activity

within hospitals have caused people to feel lost in the system. Problems

with unconventional treatment, on the other hand, include risk of

misdiagnosis, quackery, and victimization of the patient. Although the

patient's right to choose is undeniable, he should also have a right to know

and choose from alternatives to physician care among conventional,

licensed health care providers. The public image of the nurse is misleading and the public does not

have a clear understanding of the roles of 17-11SCS, nurse practitioners, and

midwives either in or out of hospitals_ Young graduate nurses feel that, despite their hard work and their

sometimes subtle but valuable contributions to patient and staff; they are

neither noted nor rewarded. Staff nurse loyalty is split three waysto

hospital administration, to physician, and to patient The patient often

comes last because physician and hospital advniinictration have greater

power to reward and discipline. Many nurses are leaving hospitals because they are prevented from

giving personalized professional care by a system that frequently deprives

them of the autonomy to set their own professional priorities. In one

instance, a successful program instituted by a nurse clinical specialist

serving as a psychiatric liaison nurse for pediatric units was attacked by

the medical staff as having the wrong priorities. Over a period of months nurses (working in the pediatric units)

emerged as confident, knowledgeable and vocal participants. They

lost their usual reticences in offering ideas and were proud to claim

results of their work. This view was shared by the parents who gave

the nurses enthusiastic praise when discussing their children with

medical staff. Tension grew among a small group of resident staff

who refused to acknowledge the nurses' expanded role in the

psychological aspects of care. They accused the nurses of "taking

over," of resisting physician leadership ... (and saw) the increasing

appreciation of psychosocial factors as a devaluation of their work in

physical treatment (22). When the clinical specialist nurse who developed the program was on

vacation a chief of service demanded that she be discharged. Only her

threat to sue the hospital and the director of nursing saved her job and the

820

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IssueThe Future of the Nurse Practitioner

About 12,000 nurse practitioners have been trained in the 15 years since

the first nurse practitioner training program was started. This represents a

considerable resource for maternal and child care. The nurse practitioner

can manage 80-90 percent of all health care visits of "well" children and

also contribute substantially to the care of chronically ill children. Nurse

practitioners can provide care which was previously unavailable and are

therefore highly regarded by their patients and/or parents.

A United States Congressional Budget Office study comparing new

health professionals with physicians found that nurse practitioners spent

65 percent more time per patient visit than physicians and that hourly

costs were about one-third to one-half of those of physicians. Another

study reported that nurse practitioners in private care practice increased

the number of patients seen and that the quality of care based on illness

outcome and patient satisfaction equalled that of physicians.

Babies cared for by nurse midwives weigh more and adjust to

extrauterine life faster, premature babies are fewer, and less fetal or

neonatal deaths occur even in populations at considerable risk (24). Also

the incidence of prematurity decreases, more prenatal care is ackninktered, and followup care is better when provided by mith-rives.

The degree to which nurse practitioners and nurse midwives can make a

contribution to the health care of mothers and children will depend on the

ability of nurse practitioners to survive a rising tide of physicians,

resistance and reimbursement mechanisms and the realization on the part

of policymakers that a large increase in the number of physicians is

neither economic, necessary, nor desirable to meet the primary health care

needs of the country. A number of State medical societies have openly opposed revisions of

nurse practice acts to update nursing services, and physicians are actively

opposing nurse practitioner endeavors to reord- care (25).

Issue--Third Party Payment and Reimbursement

Central to the question of reimbursement for nursing services are three

goals of public policy regarding health care. These goals are to ensure

accessibility, quality, and reasonable cost of care. .The current system of

reimbursement effectively interferes with the achievement of these

objectives. Financial accessibility is limited by regulations that limit reimbursement to physician prescribed treatment, do not provide payment for

preventive care, and support the physician as the sole entry point into the

medical system. Except for out-of-pocket payment by patients and a few

clinics covered under the rural health bill, no access to fee-for-service

payment for nonphysician health providers exists.

These regulations not only interfere with the development of independent nursing practices, they also inhibit employment of nurse practitioners

by private physicians. If the physician must personally see and approve

822.
therapy for each patient seen by a nurse practitioner (current Medicare

regulations) no economic advantage exists in employing one. Requirements that make the availability of professional nursing services conditional on the recormnendation of a physician. restrict freedom of choice for consumers and frequently prevent them from receiving needed

care. This stipulation is a particular problem for home-bound patients and

persons in long-term care facilities. By denying third party payment for preventive and health promotive

services the quality of care is severely restricted- Neither collaborative physician-nurse practices offering comprehensive health care, nor innovative preventive services for schools, day care centers, and the elderly are

likely to develop. The problems of limitation of third party payments for nursing service

extend into the hospitals. Currently, nursing service budgets are inflated in hospitals because they are often .combined with costs for linen, auto maintenance, and public relations as well as costs for nonprofessional nursing services. An established and monitored uniform budget procedure

should . identify true costs of services by professional nurses within

institutions.

The objections to third party payment for nonphysician and preventive

services stem from the national concern with cost of care, lack of belief in

the efficacy of preventive and promotive services, and the lobbying

activities of the American Medical Association.

In the long run, some form of national health insurance must be developed to liberate all health. provide= from the trap of the fee-for- service system which requires physicians to be businessmen and deprives

the public of needed health services. By now it has become evident that the contribution of nurses, acting

independently or in collaboration with physicians, is both economically

and clinically effective, and that the nurse in some instances has become

the preferred primary care provider. The current system of reimbursement prevents the development of a

self-sufficient and autonomous group of effective nonphysician health

professionals, hinders the patient's right to choose his practitioner unless he pays for the service, and supports a health delivery system which is highly specialized (curative rather than preventive) and extremely expen- sive.

Hospital nurses should be reimbursed directly for the special services

that they provide such as counseling. Reimbursement should be based on the salaries of the lowest cost

credentialed provider. Reimbursement should be made according to the

service rendered and should be paid directly to the qualiy er. ad

credentialed person providing the service.

CONCLUSION

An available pool of health professionals falls into the category of nurse despite a wide range of differences in training and competency. Although

823
the nurse.; of today are successors to the nurses of the turn of the century, many of them have gone far beyond the traditional roles of the provider of bedside care. At the same time, the bedside care required of those .who

continue to provide such care has become more complex and specialized_ Despite the preparation of many nurses in skins and techniques that closely resemble those of physicians or that overlap physicians' and, despite their being clinically and economically more effective than

physicians under certain circumstances, nurses are stall regarded as

supplementary to or extensions of the physician-centered health care

system as it currently exists in the United States. The major issues that must be resolved to increase nursing participation

and improve the effectiveness of nurses in the provision of services for mothers and children include:

Recognition among the public, hospital administrators, and other health professionals of the training and competence of nurses in many and diverse specialties and their ability to provide quality

care both in and out of hospitals Development of health delivery systems that focus on the needs of patients rather than the disciplines of providers The need for nursing to more clearly differentiate levels of practice and ways for achieving them

Reexamination and restructuring of outmoded credentialing and

licensing systems to give appropriately prepared nurses more

autonomy and allow more independent practice Legislative and fiscal support for alternatives to physician care

including nurses, nurse practitioners, nurse midwives, social workers, nutritionists, physical therapists, psychologists, and

trained home visitors

Support for the visiting public health nurse concept, especially

among those segments of the population that are most in need and

who have no easy access to health facilities Reimbursement procedures that will allow nurses and other nonphysician health professionals to be reimbursed independently

through public and private third-party payment systems

Increased Federal support for doctoral preparation for nurses and

for nursing research

Inclusion of nurses in health policymaking boards and committees

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824 "or
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(18) Williams. J. W. "Merlion EdnostiOn and the Midwife Problem in the United States."JOGI7221 of the

American 141ediCallAseociation 58: 1.1912.

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1932.

(20) Dehlaio, D. "Health Services for Chrsdren: A Descriptive Analysis of an Urban Problem."

Preesettsd at the scientific seminars of the American Academy of Nursing, Los Angeles. September

17,1979.

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Community Health 1(1): 62, April 1978-

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March 1978.

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Journal ofPsibbc Health 68(11): 1074, November 1978.

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The Journal at-School Health 78: 603, December, 1978.

Alpert, J. and E. Charney. "The Edacation of Physicians for Primary Care." US Department of Health.

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Aksheler, A_ and A. IL SraidL "Tem114ectings: A Way to Help Adolescents Cope with Hospitalizations."

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1979.

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827
SECTION VII

RESEARCH AND

INFORMATION NEEDS
REFLECTIONS ON MATERNAL

AND CHILD HEALTH PROGRAMS

REVIEWING 'DIE LITERATURE:

1975-801

by

GEORGE A. SILVER. M.D.2

INTRODUCTION

Over the past 5 years the striking characteristic of the public health

aspects of maternal and child health has been the dearth of new and

imaginative developments. With certain notable exceptions, the excellent bibliographic review published in 1974 (1) and the analytic review of Newberger, Newberger, and Richmond (2) are as timely as they were when published. The exceptions are in the field of midwifery and home births, where a tempest is brewing on philosophical and humanistic as well as on scientific and technological grounds, and in child abuse and neglect, for which there is a burgeoning literature from a wide range of disciplines

that offers insighti into what had been earlier perceived as a medical and

public health phenomenon. Even the legislative arena has shown little interest in the public health

aspects of maternal and child health so that, while some efforts hav

focused on more extensive child health service legislation, with the single exception of Public Law 94-142, the Education for All Handicapped Children Act, little has been accomplished. The latest proposed legislation, the Child Health Assurance Program (CHAP), languishes irt the Congress; one or two similar bills have not had hearings. Some State

activities, however, deserve mention. Cons...ectic-ut made a gingerly effort in 1980 toward improving school health services. Many other States are moving ;In this direction, including Pennsylvania, Utah, North Dakota,

'Based upon an annotated bibliography prepared by Dr_ Silver and Raymond Borsoi: supported by a

Ott from the National Censer for Health Services Research. I R03 HS 04145-01.

The articles or books referred to in the text of this section arl not the only ones applicable. nor are they

neeerearity the best to be found in the literature to illustrate the paints. However, they do exemplify

reporting in a more or leas random selection2Professor of Public Health. Yale University School c4Modicine and from the Center for Health Studies

of the Institution for Social and Policy Studies.

831
and New York. In addition, the Southern Growth Policies Board has

undertaken a study of the status of children in the South which has

emphasized data collection, but with the ultimate goal ofreforming social

policies regarding children including health policies. Other, more promising, initiatives include the Robert Wood Johnson Foundation which has funded statewide efforts to improve maternal and

child health care in rural areas and school health service innovations

across the country. Congress ordered the Department of Health, Education, and Welfare (DREW), now the Department of Health and Human

Services (DHHS), to establish a Task Force (The Select Panel for

Promotion of Child HealthP.L. 95-626, Sec. 211 (2)(A)) to review and

recommend improvements in child health services and programs. From the standpoint of social philosophy, the most important publication in the past 5 years was the report of the Carnegie Council for

Children (3). The report emphasizes social improvement as the key .to

improved health of children. It takes the position that tinkering with the

symptoms of delinquency, drug abuse, and morbidity does not deal

effectively with the problems unless more funds are made available for the

family, better education for poor children, and a national policy of social support. Keniston does not ignore the need to improve existing health care programs for children, but believes these can never succeed entirely or make serious inroads into the problem unless the larger social issues of

poverty and discrimination are eradicated. Although the need for more and better social support for children is

recognized, the improvement of health services may be importantif only because such improvements will strengthen the resolve of child health

advocates and lead the way to other changes. Maternal and child health services have improved, as evidenced by

recent statistics (4) Large investments have been made by the public

sector in health programs for mothers and children. Attitudes regarding

social commitment to children have changed somewhat, particularly in an

increased sense of responsibility for the poor and helpless. However,

important gaps still exist in service availability and delivery for segments

of the population, leading to disparities in levels ofhealth status (4). In addition, the risks have shifted over the last decade, as have the

agents of risk pow recognized as contributing to the ill-health of children

and to infant mortality_ These risks include the increasingly younger ages at which women bear first childrenparticularly teenage and unmarried

womenwhich is associated with higher rates of infant morbidity and

mortality as well as with social and psychological disadvantages. Drug use

among younger children is increasing, as are sexual activity, associated

venereal disease, and cigarette smoking. The uneven distribution of health care resources and facilities has

continued to result in discrepancies in health status among poor children,

minorities, and the geographically isolated. Furthermore, the lack of

universal eligibility criteria for medical care skews the distribution of such

care in other ways as demonstrated by the inappropriate use of preventive

services and lack of availability of such care for those who most need it.

Finally, increasing recognition of the dark side of parental responsibilitychild neglect and abusehas taken place in the past decade. Child

832
abuse and neglect had, of course, been noted in earlier years;3 however, recently increased concern is evident in the accumulation of information

and literature; in the establishment of a data collection and dissemination

center; in the publication of a journal; and in a series of national and

international conferences sponsored by organizations concerned with the

issue.

Despite increased concern for the health and well-being of children, however, a summary of the findings and recommendations of Sheldon White, et al. is still applicable. It should be noted in any assessment of the

state of maternal and child health and used as a current guide for change

and improvement. "There is clear evidence that significant health risks to

children and particularly to poor children persist despite the general

improvements in American health over the last century" (6). The idea is

repeated in the later comprehensive article by Newberger et al.: "Review

of the nature, quality and distribution of child health services demon- strates a systemic inability to reach and treat children most in need of

them" (2).

The White report associates certain social and environmental factors with poor and minority children. These include the gre Ater disabling maternal factors that contribute to higher infant mortality and maternal morbidity, as well as mortality, housing, nutritional, and environmental risk factors that contribute to the greater susceptibility of poor children to

infectious disease and other health problems. The White report strikes

immediately at the central issue: The Federal Government does not

invest in children in proportion to their numbers. The basic reason for this difference is that national policy has accepted provision of a minimum

level of health services as a right for the aged. Such a right does not exist for children" (1). Other factors noted in the report that reduce the

resources available to the children in need include the entrepreneurial nature of medical practice, lack of research in the special social and

environmental factors affecting childhood illness, and the lack of bold

advocacy. Such advocacy would principally emphasize the economic and

social advantages that would accrue if appropriate and high quality health

care were made available to all children. Improving child health means

improved adult health status. In addition to pointing out the needs and gaps in delivery, the White

report attempts to evaluate existing programs from the point of view of

their effectiveness, however limited their objectives. Government pro- grams come under heavy criticism for failing to undertake sufficient critical evaluation and, when evaluation is done, for being relatively

ineffective. Lack of coordination is mentioned, as are spotty coverage and

inappropriateness of goals. "One clear need is for models which combine medical, psychological, and educational diagnoses and treatments; the

failure of Head Start and. Follow Through to become truly integrated and

comprehensive does not bode well for other attempts, such as the newer parent-child center projects" (I).

31flbe um= abuse Formally entered the literature in 1962 in PLeunmet wIlbe Battered Cladd

Symadronme'OmereAmunamenck!OLINtohompratahy

&29 833
The Newberger and Richmond report emphasizes "the new morbidity"

more than the White report does, and includes the "increasingly important symptoms of familial, social, and behavioral distress as child abuse,

accidents, and childhood suicide." Furthermore, the Newbergers attempt

to carve out an area of child health policy distinct from national health

policy, in recognition of the effects on health or medical care programs when adult and child needs compete for resources. The White report also

touches on the need for separate health policies for children in its final

recommendations: "To what extent will reforms and revolution in the

larger health care delivery systemnational health insurance, consumer

advocacy and control, new organizational forms such as prepaid group practicehave a greater long run (or even immediate) impact on the

health status of children, individually or as a group, than programs

specifically designed for (and directed at) children?" (I). Newberger, Newberger, and Richmond (2) present a comprehensive

review and include information on the status of child health in the United

States today. the social and environmental context of child health, the

current conceptual basis of child health care as well as the actual and the

alternative proposals and, based on these, program recommendations for

improvement_ To bcgin with, they agree that child health improved from 1964 to 1974,

but that the improvement has not reached all children or brought benefits

equally to all children. Furthermore, certain morbid conditions (accidents)

have not improved at all, and some new grave concerns have emerged

behavioral and psychophysiologic illnesses. Most serious is the relative

failure of services needed and continuation of noxious factors among the

poor and minority group children, so as to leave them behind in the general advance. Poverty and minority status represent continuing powerful deterrents to equity in child health, as evidenced by lower

immunization rates, more malnutrition, and higher infant mortality.

Because malnutrition is associated with prematurity and low birth weight, which are associated with brain damage and mental retardation, and

because lesser availability of health and medical care services also means

lesser opportunity to repair the damage of these factors, the children of the

poor and minority groups are in double jeopardy. There is a sad recital of continuing preventable disease because of lack

of immunizations among certain population groups: diphtheria among Chicanos and Indians; pertussis and polio among the poor. Despite mandatory immunizations prior to school entry, preschool children are

proportionately less well protected and suffer the consequences. "Even

though the prevalence of handicapping conditions and their antecedents

in childhood illness is disproportionately greater among the poor, only

15.7 percent under 17 from families whose annual income is under $2000

visit a physician during a 1-year period, as compared to 53.9 percent and

57.6 percent, respectively, of children whose family income is $10,000 and

above and $15,000 and above." More than economics is involved in

failure of the poor and minority group children to receive needed care or

preventive services. The organization of the health care service system

including access and arrangements, lack of educational outreach activities, and language barrierspredisposes to lesser utilization.

834
Basic policies with regard to child health, including lack of universal eligibility criteria, needs and means tests, and State discretionary

authority, hamper equitable distribution of services. And American

patterns of variety and heterogeneity of programs ("pluralism"), specialization, fragmentation of programs, the entrepreneurial nature of medical practice ("fee-for-service" and "solo"), individual character of the practitioners, and emphasis on freedom of choice militate against universal provision of services. Newberger, Newberger and Richmond conclude, "Where the means exist to ameliorate or eradicate health problems, such means do not equitably reach and serve the poor and nonwhite." They are stern about the possibilities of a two-class system of care, sometimes euphemistically described as "targeting": "Whim services are provided for the poor, they frequently neglect minimal needs for privacy, dignity, and convenience." Poverty, they point out, is not given adequate consideration as a causative factor of illness because it is rarely the

immediate cause and because the conditions it may give rise to are less

likely to affect the majority of children. These conditions are thus of lesser concern to the larger society and the health establishment. Nevertheless, diseases concentrated among the poor (such as lead poisoning) affect greater numbers of children than some illnesses that receive great attention (like polio) but attack higher income families as well as the poor. One important contribution of the Newberger compilation is the strong

emphasis on both the poverty and minority etiology of illness and the

environmental sources of morbidity and mortality. From this topic, they proceed into discussions of illness phenomena that are socially and

interpersonally derived. The recommendations therefore deal with the

irrationality of the current structures for child health and more recently

recognized relationships. They want a more orderly system of care, an

emphasis on prevention, more attention to the special needs of the

disadvantaged, more concern for equity in the system, a mechanism for outreach, elimination of environmental factors and "ameliorating risk, screening for risk, and the delivery of service as a matter of right." For them, the basic elements of improvement of health services for children are entitlement and access (their emphasis), which call for a national advocacy program including the following: a social program to

help families; direct intervention in communities; teaching parents about child development and child care; and providing advice and guidance in

addition to effective programs of prevention and medical care. The specifics of their recommendations are as meaningful and necessary today as when they were made: Adequate financing through a national health insurance program

for all or for children alone

Local planning

Improved screening and surveillance A coordinated delivery system

Focused manpower development and training On_ reviewing these comprehensive and important documents, the

sobering thought occurs that this additional review of the literature may

be wholly unnecessary because what is needed is action.

835
EVIDENCE OF CONTINUING FAILURES IN CHILD HEALTH CARE PROGRAMS:

NEEDS AND MEETING THE NEEDS

Two relatively comprehensive general studies have been published (7, 8) with regard to health care needs. Aday, Anderson, and Fleming consider

the entire age range from the standpoint of access. The theoretical framework conceives of the delivery system and the characteristics of the population as one aspect of access ("probable or potential levels of access

to medical care") and "utilization and satisfaction measures" or actual or

realized access to services as another aspect of access. Among the findings, the following are most noteworthy: Poor nonwhite children had the least access to regular sources of care. As many as 23 percent of poor nonwhite children had no

access compared with 7 percent for white nonpoor children. Poor nonwhite children see a pediatrician as the regular source of care more frequently than the nonpoor white children (20 percent to 14 percent) but this is probably an artifact of clinic services. The study makes no distinction between seeing the doctor in his office or in a clinic.

The designation "without regular source of care" is associated with not feeling the need for care, so that, of this group, 23 percent of the nonwhite children had never had a regular doctor. Low-income persons were either uninsured (55 percent) or on Medicaid (76 percent) and Southern nonwhites were less likely to be on Medicaid (which can be attributed to variations in State

eligibility requirements). Farm dwellers report longer travel times to medical care, as expected, and more extended waits in physicians' offices_ They are

also less likely to have medical insurance. Persons using hospital outpatient departments have less conve- nient care (longer waiting periods, more restrictive time frame), particularly low-income persons. As far as actual utilization is concerned, rural farm dwellers and

low-income persons saw physicians less than upper income urban persons (68 percent of rural persons compared with 78 percent of urban persons; 73 percent of low-income persons compared with 79 percent of high-income persons). Among nonwhite persons with incomes below the poverty level, as few as 64 percent saw a physician. Poor children between the ages of 1 and 5 specifically

used services even less (78 percent to 79 percent). Because the data were collected according to age groups and not by income levels, discrepancies in immunizations among groups with different

incomes could not be detected_ Poor nonwhites consistently used less preventive care and had

lower immunization levels, although the differences were not great (60 percent compared with 77 percent for the tuberculosis patch

test; 89 percent compared with 95 percent for polio immunization; 76 percent compared with 86 percent for measles immunization).

836
Low-income women are less likely to see a doctor within the first 3

months of pregnancy (65 percent compared with 80 percent). Thirty percent of nonwhites below the poverty level saw a dentist; 23 percent of Hispanics below the poverty level and 51 percent of central city dwellers compared with 61 percent of high-income

persons. Finally, satisfaction with services follows similar patterns: better educated persons with high incomes are more satisfied (or less dis- satiszied) with the convenience and availability of service than poorer, less well educated persons (46 percent to 56 percent). Nonwhites with incomes below poverty level show 86 percent greater dissatisfaction with availability of services, 79 percent more dissatisfaction with convenience but only 59 percent greater dissatisfaction with financing perhaps a rzr,ult of Medicaid.. In short, "minority groupsurban and rural blacks and persons of Spanish heritage in the Southwestappear to be more dissatisfied with all aspects of their care than whites. ... The actual utilization of services

appears to be highly correlated with the extent to which organizational and financial barriers to care seeking may also persist" (8). The authors conclude that ad hoc arrangements may be all that is needed to improve access to health care. They recommend wider use of

the National Health Service Corps, increasing services for specific groups such as migrants or mothers and children. Better organization of services and more health education arc also recommended, as is improvement of existing enabling legislation which they believe has been effective in the past as in the case of Medicare and Medicaid. The Harvard studies are entirely devoted to critical analysis of the health care system's response to the needs of children. Although infectious disease was found to have almost disappeared as an important cause of childhood mortality, accidents have not declined as markedly. Infectious diseases still take a greater toll among nonwhites than among whites

(44/100,000 compared with 14) and accidents take a far greater toll among

nonwhites than whites (53.6/100,000 compared with 26.9). Chronic illness

is reported in greater volume among the well-to-do than among the poor (which may be a function of definition and access). Because clinical examination for allergies was not done, poor children may have less asthma or by fever, but this speculation is unlikely. Observable

conditions such as orthopedic cases were more common in lower income

groups (13.8 to 9.7). Whether medical services were obtained was certainly

a function of family income. The series of articles in the Harvard volumes examines techniques for determining need and suggestions for improving the organization and

financing of medical care for children. The following recommendations are included in the final volume:

"Children present different health problems and thus have special medical needs quite different from those of adults. Current government policies are not well-directed toward fulfilling those

special needs." "Children's illness patterns indicate a need for a primal,- care

s 3 837
focus in the medical care system. Children need continuing and

comprehensive medical attention aimed at prevention." "Any proposed change in the medical care system must be

carefully considered in light of the special needs of these groups of children (minority children and children from lower income

families) with more illness and lower service utilization rates."

Some doubt exists as to the effectiveness of primary care for

children and the present system's techniques for delivering that

care. Observation of children must take place where they live,

learn, and play, not just in the doctor's office. The care must be

given in conjunction with outreach services and followup efforts

to ensure compliance. Financing ought to be other than fee-for-service although the

report does not specifically recommend a particular system of

payment. Nonphysician child health workers are necessary and desirable in

staffing any organized system of child care. Financial, professional, and organizational barriers to their use must be overcome.

To improve the capacity of the child health workers to recognize,

diagnose, and treat childhood illnesses, research must be undertaken. This research should particularly emphasize alternate

systems of service, delivery, and financing for children's primary

medical care.

Several other publications cover a wide range of topics related to

children's health, but are more restrictive geographically. Haggerty and

his associates (9), in an analysis of needs and capabilities of meeting child

health needs in Monroe County, New York, based on specific studies in

that area, suggest improved organizational and staffing approaches to

care. A good part of the introduction addresses the Rochester area, which

may be considered an urban setting comparable to many otheys in the

United States. However, as far as the statistics on chile -;---.0th are

concerned, Rochester is much richer in resources (doctors, h.-A-7., ...I beds,

mental health services) than the United States in general, even 4_,tough the

data on illness and unmet needs may be very like what has been found in

other places. The number of physicians in relation to the rest of the

population is high, but people complain nevertheless of the difficulty of

reaching physicians; pediatricians biitow a higher number of office visits

than their counterparts in other parts of the country and spend about 10

minutes per patient. This is taken to mean that to expand the preventive

services and health promotion activities, more nonphysician professionals

may be needed. They write, "resources . are poorly distributed . .. needs are not

universally well met. The greatest challenge lies in creating a more

efficient means of organizing these existing resources than in expanding

them." Regarding needs the report states, "The need for intensive, complete,

and sustained counseling for many of these families is apparent, yet it is equally evident that such assistance is frequently lacking." Nonwhite

infant mortality rates, although below the national average for nonwhites,

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Other area-specific studies of unmet child needs are published from

time to time, such as the Lash and Sisal (10) New York study which also

found health resources inadequate in both quantity and distribution to

meet special health needs of certain population groups. In a review of the

Early Periodic Screening Diagnosis and Treatment program (EPSDT) for

poor children, the authors reiterate the special needs of poor and minority

group children, and the failure of Government programs to meet their

responsibilities (I I). For statistical background, the annual annotated "Health: United

States," published by DHHS, particularly its section on "Health Status of

Minority Groups," is especially good. A series of tables graphically

illustrates the sordid story of neglect and inequity that results fror.a

national policy in response to the needs of poor and minority children.

Other Government publications include DHEW's "Legislative Base:

Maternal and Child Health Programs" (12); "Supplement" (13); and

"Report on Federal Government Programs That Rel.: to to Children" (14).

Neutral in tone, the latter outlines the limitations of the Government's

approach to meeting children's health needs and suggests wider coordination and extension of responsibilities. A report of the Children's Defense Fund also briefly recounts tragic

instances of the health care system's failure to meet children's needs,

buttressing the narrative with statistics. In conclusion, it states, "Health

services make a difference in the incidence of death and disease, '.>at they

also make a difference in the quality of life we lead. ... Any citizen who is

concerned about the kind ofsociety we live in must recognize that a full

range of child health services should be available to all rather than

available to some on the basis of income or race" (15).

America's Children and Their Families is another %cry useful compilation of data also available from the Children's Defense Fund (16).

A sampling of other recent publications reveals an abundance of data

on prenatal care and infant mortality; almost as much on the "newer

morbidity," child abuse and neglect; drug muse; teenage pregnancy; and

grave concern about rising rates of teenage suicide. Grossman believes the

"new morbidity" is very much a problem of upper income groups (17).

Nevertheless, poverty dominates the picture of children's health needs. An

inverse relationship exists between social class and infant mortality (18).

Access to service by young children in low-income urban areas is limited

(19); regular sources of care offer better chances of obtaining preventive

services (19, 20. 21). Lifestyle differences accounted for significantly

different health status of poor inner city children compared with suburban

youngsters (22). Poor children tend not to have insurance coverage,

limiting access to care; poverty and race outweigh e.t -v. the availability of

resources in their effects on infant mortality (23). Income group

differences mask mental health needs of children by virtue of "needs

hierarchy"; physical illness takes precedence in the need for care (24).

Adamchak has published a broad review on the relationship of infant

mortality to socioeconomic status (25).

Race and minority status have the same effect as poverty and are

reinforced by it
Mortality rates for blacks are twice that of whites for children under 6. For diseases, black rates are higher for all age groups. Among blacks, dentist use rates are lower, as are private physician use rates (26). Only half as many black as white pregnant women began their prenatal care in the first or second month, and almost 4 times as many black as white pregnant women had no prenatal care (26). As much as 76 percent of perinatal mortality can be associated with delays in prenatal care (27). Chase and Nelson (28) found 50 percent to 150 percent higher infant mortality if the first prenatal visit was made after the 1 lth week of pregnancy, or if no visits were made. However, the Collaborative Perinatal Mortality Project (29) found the underlying causes in pathologic states, not social considg---,tions: amniotic fluid infections, abruptio placentae, premature rupture of the membranes, congenital anomalies, and the like Whether further study would relate the pathophysiological events to

poverty and race is questionable (30. Gortmaker did show, in his analysis of New York City t'rths, that insufficient prenatal care was not of itself sufficient to increase the probability of higher infant mortality, but that poverty and minority status associated with lesser prenatal care increased the probability of lower birth weight babies. This status added to the probability of higher infant mortality (31). Bruce et al, in their study of a regional perinatal network with statistics on pregnancy outcomes of unregistered mothers, found a definite correlation betw'en low birth weight and poor Apgar scores (32). Goldenberg (33), reporting on the condition of maternal and child

health in Alabama, notes that nearly one-third of the women and children

could not afford to use private physicians for preventive and medical care; that blacks had twice the infant mortality of whites; children born to teenage mothers and mothers in rural areas had higher infant mortality

rates than expected; and that hi her infant mortality rates were geographi- cally related to lower utilization of prenatal care. Health departments were understaffed, lacked sufficient pi rsician involvement, and were housed inadequately. Coordination was lacking among health clinics, doctors' offices, and hospital services. This report might be a description of defects and deficiencies in the United States as a whole.

Handicapped children with special medical needs live largely in

poverty; in addition, surprisingly, 15 percent do not live with parents (34). Foster child medical care needs have received insufficient attention.

Immunization, although reasonably successful in reaching school-age children (35), has not beer successful with younger children (26). In children 1-4. only 63 percent were immunized against measles, 62 percent against rubella, 6S percent against DTP, and 61 percent against polio. This lack of immunization is ascribed to "public apathy" by the health professionals and the medical literature (36). Difficulties in obtaining immunizations inherent in the system are not mentioned. A great deal is made of the administration program to offer financial support to State and local health departments as incentives. A great many papers appear on the subject of social and behavioral contributions to morbidity, many on the psychological dimensions of illness and apparent increases in incidence of illness. A comprehensive

841

c. g 1
review by Gershenson (37), although brief, covers most aspects of the

subject He underlines The family morbidity aspect with the consequent

need to coordinate pediatric and social agency efforts at case-finding,

prevention, and weatment. NeN -Ttheless, professional insularity still

results in focusing on the pediatrician (38). Other aspects of the "new morbidity" are reflected in statistics on illegal

drug use by 24 percent of junior high school students in one study (39).

Among the largely minority group Job Corps enrollees, 53 percent were

current users of alcohol, 29 percent current users of marijuana, 5 percent

of hallucinogens, and 2 percent of opiates (40). A junior and senior high

school survey in 10 cities showed a high correlation-24 percentbetween drug use and alcohol use on a regular basis (41). Mexican-American

children aged 9-17 were 14 times more likely to use abusive substances

than their Anglo peers (42). The latest report from NIDA, entitled A Drug

Retrospective: 1962-1980 (not yet released) underlines the growth of

teenage use of illegal drugs. Marijuana use increa from 4 percent to 68

percent in the period covered; the number reported to have tried opiates

and cocaine at least once increased from 3 percent to 33 percent. Furthermore, the report states, "The Institute cautions that both the

Survey ant? the Drug Retrospective underestimate true use."

All reports mention that family instability and family conflict are

associated with greater incidence ofillegal drug use.

Another adolescent problem is the increase in teenage pregnancy,

referred to as an "epidemic" by some. The psychosocial reasons behind

this increase are a matter of speculation: anomie, peer pressures, family

situation (43, 44). Declining marriage rates in the last decade may be one

factor in the increased number of pregnancies among unmarried adolescentsone-third higher in 1976 than in 1971but failure to use

contraceptives consistently must also play a role (45).

The fact of teenage pregnancy, whether it has actually increased or not,

is generally agreed to have morbid consequences and therefore needs to be

better understood and dealt with Teenage mothers are more likely to

come from abusive homes and be abusive or neglectful of their children

than other mothers. The economics of family support in the United States

generally prevent a child in a teenage parent home from getting adequate

support for optimal growth and development Early pregnancy interrupts

the education of young parentsperhaps permanentlyin a social setting

that rewards educational achievement, demands higher educational

standards for higher income jobs, and punishes poorly prepared or

unskilled workers (46). One-third of the abortions performed in the United States in 1977 were

for those under 19 years of agemostly, of course, for those between 15

and 19 (47). The health and medial needs of adolescents are different from those of

other population groups. For instance, in an ambulatory care center 12

percent of young people had venereal disease; in a detention center 30

percent were drug abusers and 6 percent had venereal disease; and in one

high school 35 percent had dental caries. Those living away from home

had significant dermatologic problems (including 80 percent with acne,

eczema, and other such conditions) and dental caries. In short, a variety of

842 8 3 s
unmet needs found among adolescents reflects a gap in services aimed

specifically at their needs (48).

More seriously, a general analysis of overall statistics reveals rising rates of new and old morbidity conditions among adolescents. Alcohol and drug abuse are increasing, as is cigarette smoking. Sexual activity is increasing among the young. Eighteen percent of I5-year-old girls

reported having had sexual intercourse at least once; because unprotected intercourse is not uncommon, adolescent pregnancy, as noted, has

increased accordingly. Sexually transmitted diseases are virtually epidemic

among adolescents; IC CZSC rate for 15-19 year olds is three times what it was two decades ago. The majority of deaths of adolescents are related to behavior rather than 'infections or other illnesses. Accidents and violence, including suicide and homicide, accounted for 70 percent of the deaths of

those 12-17 years of age and for 77 percent of the deaths of youths 16-17 years of age (49). Waldron and Eyer (50) tie the rise in death rates to socioeconomic

conditions which have resulted in tension, stress, anxiety, and "over- whelming life problems" leading to the increased use of drugs and alcohol that, in turn, contributes to the rise in homicide, suicide, and motor vehicle accidents. Unfortunately, their analysis is based on the diaries of college students and is hardly generalizable to all adolescents, or even to all college students. Nonetheless, the steep rise in adolesce:: suicide

requires urgent attention. It is now the third leading cause of death among 15-17 year olds and is probably underestimated at that because of reluctance to report it (51). Crumley believes the social class of adolescents who attempt suicide is recognizably different from that of other adolescents. He urges efforts to determine the nature of these

differences so they can be identified and the suicides averted (52). Child abuse and neglect, although not new discoveries, have received

increased attention_ The first international conference on the subject was held in 1976. A variety of considerations as to etiology (53), prevention (54), and control (55), have been offered. In general, the etiological factors are part of the "new morbidity" and the result of parents unprepared for parenthood, social pressures, and fear (44). One area of conflict that may contribute to a redefinition of health services for smothers and children is partly the result of the feminist movement_ It is epitomized in the controversy over home birth versus

hospital delivery. The current number of home births is still relatively

small (56, 57). The growing technological character of obstetrics, including mechanization of hospital procedures, anesthesia, induced labor, increasing numbers of caesarean sections, and electronic fetal monitiormg, reflects a growing depersonalization; such procedures can actually be dangerous as well (58, 59). Many women are growing dissatisfied with

such services. This dissatisfaction has given rise to fear on the part of physicians that childbirth will pass out of medical hands as women begin

to demand that physicians be servants and not masters of pregnancy. In

short, many persons believe that, although some pregnant women have

conditions that may require medical care, pregnancy is not a pathological condition requiring constant medical interventivn- Physicians, obstetri- cians, neonatologists, and geneticists are not convinced. An American

8 e.,..119

843
Medical Association conference report on "antenatal diagnosis" disposed

of contrary evidence and endorsed ultrasound, amniocentesis, electronic

fetal monitoring, fetal lipid determination from amniotic fluid, and direct

fetoscopy, all within the limits of prescribed standards_ It implied that all

deliveries must take place in hospitals under specialized professional

supervision (60). Despite technological advances, child care in the United States lags

behind that in European countries, where family allowances and social

services are provided, as is universal access to preventive and medical

care_ In this country, focusing less attention on the mechanical aspects

and more on the social, psychological, and economic may be sufficient to

lower infant mortality rates and improve child health in general. However,

the occasional journal article gives pause. A piece in the New Zealand

Medical Journal on illness and health care during the first 16 weeks of life

is not reassuring in that country where economic barriers to care do not

exist. It reads, "A significant relationship exists between all measures of

social background and the risk of respiratory illness_ Children from

families of low income, children of solo parents, of non-Caucasian

parents, and of mothers with low education had a significantly lower

incidence of immuniz- ation at 16 weeks of age" (61). Although nearly 98

percent of the population examined conformed to a healthy utilization

pattern, as seen by public health nurses and physicians, socioeconomic

factors continued to play an important role in barring others from care.

Even more disconcerting is the recent evidence from the USSR on the

rise of one-third in rates of infant mortality between 1971 and 1976_ The

USSR has devoted enormous resources to maternal and child care and to

eliminating economic barriers to access_ Nevertheless, rural rates of infant

mortality are as much as 12 percent higher than urban rates_ Regional

differences exaggerate the rural-urban differential (183/1000 live births in

Estonia compared with 49.1 in Turkmenistan). Explanations are sought in

the high rate of alcoholism in the Sovict Union and in the higher infant

mortality found among pregnant women who do manual labor throughout

pregnancy_ It has been suggested that frequent abortions (an assumption

from the data in the USSR) may damage the reproductive tract_ More

significant may be the evidence that prenatal services are underutilized;

formula feeding is very much on the increase; certain social factors

suspected of being a ted to infant mortality such as divorce and

illegitimacy are on the increase in the USSR; and that children's

institutional care is far from adequate and subject to overcrowding, poor

sanitation, and poor supervision. Soviet professional journals also criticize

the quality of medical institutions and the care they proN.:de. The study

concludes that increases in the quantity of medical services are not enough

(62). The overwhelming impression upon reading the literature is that social

factors are critical determinants of the use of prenatal care and of

preventive services for children; that these social factors operate despite

the provision of and ready access to medical care services; that these

social factors themselves may have an important influence on the health

of children; that technological excellence is useful but not decisive in

reducing maternal and infant morbidity and mortality.

844 8
With regard to the utility of prevention itself as a factor in health, more evidence seems to be needed on the value and kinds of nutritional

programs needed to prevent low birth weights, prematurity, and associ- ated infant mortality. The role of exercise and working during pregnancy

also needs to be determined (63). The value of other prevlaitive measures

is also questionable (64). Fielding (65) conspicuously avoids discussion of prenatal care and other preventive measures in childhood in his article, "Successes of Prevention." The economic value or cost benefit of

prevention have also not been addressed in the area of e-ildbirth and

infancy except for clear-cut examples such as phenylketoiauria discovery

and congenital hypothyroidism (66) Spitzer and Brown (67), reviewing the benefits of various screening

procedures, came to the -"conclusion. that some well-established conditions can be found early and prevented; they believe preventive services should be focused on these conditions. Some general prenatal services are not included, but the search for Rh incompatibility, phenylketonuria, and

congenital lesions is both clinically and economically effective. Ortnsman and his colleagues at the National Bureau of Economic Research have published a provocative series of papers on prevention and

its impact on child health. They are much less sanguine, and their data are persuasive. They believe prevention can be stimulated by economic

incentives, but that education of the mother is the key element in the use of preventive services. Furthermore they believe only birth weight and

infant morbidity are significantly associated with preventive measures(68, 69, 70, 71, 72). Prevention is a desirable goal. Insufficient evidence to that effect eidsts, however, because of the multicausality of many conditions and because of

insufficient evidence of benefits. The gospel of prevention is based more on common sense than on experimental proof. Perhaps this circumstance also explains why preventive services have so little fiscal priority. "Experience has indicated that as long as preventive services must compete with treatment services for support from the same funding

stream, they are at a disadvantage" (73).

PATTERNS OF USE OF CHILDREN'S

HEALTH AND MEDICAL CARE SERVICES

arairribtation of the literature on utilization of health and medical care

service recapitulates and reinforces the impression left by the literature on needs. Poverty, minority group membership, and rural residence impede access to service and are associated with reduced use, even though

evidence suggests that those populations are most in need. Among a small group of families of Mexican-American ancestry in Michigan, cultural barriers as well as environmental ones were found, characterized by lack

of transportation, reliance on folk medicine, and lack of understanding of

the mores of the larger society (and vice versa) (74). Language as a barrier

is discussed by Quesada (75). Dental service utilization and the wide gulf

in utilization between majority and minority groups are tabulated by Douglass and Cole (76), and specifically with regard to Chicanos by

845 811
Garcia and Juarez (77). Both articles make the point that income is not the

sole factor in lower utilization of dentists, but that educational level and

high status occupation inc eases utilization under dental insurance, for

example. Folk attitudes also represent barriers to effective use of dental

care. Douglass and Cole emphasize the value of in-school dental services. They note, however, that these services may not result in better lifetime

utilization, although they may reduce the ultimate dental need..

As far as socioeconomic factors of utilization are concerned,

gists disagree as to whether class produces cultural differences in demand

or whether the factors are purely economic. Earthrowl and Stacey ( 71?", in

a study of parental attitudes toward hospitalized children, conclude that

the latter is true. McKinlav earlier bridged the opposing views by

postulating that the economic precariousness of lower income groups,

their greater residential instability, and their diminished opportunities

insulated them from middle class values (79). The McKinlays confirmed

this hypothesis in a study in Aberdeen of antenatal care users. They found

tha: underutilizers had different familial characteristics not entirely

attributable to social class and that these characteristics derived from

economic causes (84). The argument is complicated by evidence of greater need among the

poor and higher rates of illness and disability. The increased utilization

since the introduction of Medicaid may continue to mask underutilization

(81, 20, 82. 83). Dutton analyzes utilization versus need factorsespecially

with regard to childrenin exquisite detail. She pinpoints an additional

factor, often overlooked in the discussions: the impact of the delivery

system. Group practices outperform the outpatient and emergency rooms of hospitals in providing services, a matter of importance in the later

discussion of organizational impact on child health services. Butler and

Scotch also conclude that removing the financial barriers to care only

partially solves child health service needs (83, 84). Nevertheless, removing financial barriers is important in itself. The

effectiveness of Medicaid is demonstrated by the increased utilization of

health services by low-income peoplealthough it is noteworthy that

among poor children increased utilization was more modest than among

older groups. A study of the effects of the "negative income tax" in New

Jersey showed that the use of health services did not increase significantly

despite increased availability of money (85). The difference in utilization

may be a result ofpriorities for cash expenditure as compared with the use

of services where no exchange of money takes place.

Rabin and Schach (86) noted an increase in use of health services

among a Baltimore Medicaid population regardless of the variables

measured, including illness and well visits_ Use of preventive services

increased as well, despite the accepted view that the poor have no "future orientation" and do not use preventive services. Skinner et al. (87),

studying a "near poor" population (at or below poverty level, but above

the Medicaid eligibility level), found that utilization of services, despite

serious and chronic illness, was considerably less than that of the

Medicaid population, except when enrolled in an HMO where care was

available without added cost_ The Baltimore studies included only adults,

so the possible impact on children cannot be wholly ascertained. The

846 S )
observation of a Canadian psychiatrist and epidemiologist who examined

child patients of psychiatric services in Ottawa parallels this finding. He

points out that use of psychiatric services in general is lower in Canada

than in the United States, but since the introduction of National Health

Insurance in Canada poor children there have used such services more

than children in the United States_ Because he doubts there is any real difference in prevalence of psychiatric disorder among the children in the

two countries, he believes the elimination of the economic barrier has corrected a deficiency in access to psychiatric services for poor children

(88)- As far as utilization of preventive services for children is concerned, the

jury is still out as to whether the reasons for lack of utilization are (a) cultural, (b) financial, (c) fa rniliPl, or (d) more general. In a Wisconsin

study, prepaid group practice clearly was clearly used more for preventive

services for children than were fee-for-service settings_ Fur ihermore

children in one-child families, children under 5 years of age, and those in households with better educated parents tended to receive greater amounts of preventive services (89). The organizational implication of this

finding is reinforced by Salkever's economic analysis of data from

Baltimore, Vermont, and Saskatchewan (90). He writes, "Our results provide some support for the predictions of the economic model concerning the effect of financial and physical access barriers to demand_ However, the fact that education, attitudes, and relationship to a regular source of care are the most consistently significant determinants of demand suggests that the current policy emphasis on financial and

physical access barriers may be too narrow." A study of a rural area of

California with few physicians by Luft et aL (91) showed that only need determined utilization and that income, travel time, and attitudes could not be used as predictors of utilization patterns. However, fewer preventive services for children were noted, and educational level did have a significant effect on having a checkup. Luft et al. ascribe the lesser utilization of preventive services to "supply constraint," suggesting

improvement of manpower available would correct this. A Kaiser Foundation study of a prepaid group practice also showed

that, although class was associated with health status, need was the most significant determinant of utilization, not socioeconomic class (92). However, cost barriers to utilization did not exist, so the conclusion may not be entirely valid because it indicates only that class does not determine utilization ifcost is not a factor. Curiously, the use of preventive

services was related only to educational leveL Children were excluded from the study, but it rn v be assumed that the educational level

predicting the mother's L.- of preventive services for herself would also

indicate her utilization of preventive services for her children. To conclude, utilization is limited to some degree by poverty, minority

status, rural residence, and educational attainment. Where the financial barrier to care is eliminated or modified, these other factors appear to

have little effect on utilization. Use of preventive services is significantly

associated with educational attainment, with type of organization providing services, and with availability, in that order. Because prenatal care is

related to birthweight and birthweight is related to healthy or morbid

847
outcome of pregnancy, the improvement of educational attainment (and

health knowledge) and availability of organized medical care services are

essential to increasing use of preventive services id related improvr....nent

in child health.

ORGANIZATIONAL AND FINANCING

ASPECTS OF MATERNAL AND CHILD HEALTH

SERVICES-PROGRAM EFFECTS

Major improvements in the provision of both preventive and therapeutic services for children have resulted f-om improved organization cf

services. The early efforts such as Maternity and Infancy Care Units and

the Children and Youth Care Units stimulated and supported by the

Children's Bureau (1978, 1979) have clearly been effective, if only

moderately so (93). The burgeoning health maintenance organization

(HMO) or prepaid group practice movement has been viewed with great

optimism as the key to the unification of health care efforts and an

improvement over solo practice. A number of useful studies liave been

reported. Preventive visits are facilitated for children by the elimination of

cost to the patient (94). This finding is supported by Gray (95) and

Perkoff, et al (96). Evidence suggests that immunization rates are higher

because of outreach in HMO's (97). Clearly, the existence of the organized

setting with its capability for ushering patients into and through the

medical care system, along with the elimination of payment barriers at the

time of service, has a powerful and positive influence on the utilization of

preventive service. Group practice also favorably influenced care for the poor and

minorities, in both inner city settings (98) and a rural setting (99). The

rural services study was based on a hospital-supported system rather than

on the typical group practice with prepayment, but the organizational

format was similar. Organized group practice is given credit, also, for

reducing perinatal mortality (WO) and for enabling supervision of

continuing care in pi evention of cardiac complications after rheumatic

fever (101). Outreach is a critical element in improving care (99). Group practice

advantage is ascribed by some observers to the elimination of financial

barriers and to improved opportunities for channeling patients by others.

Columbo et al. (102) reported on the beneficial effect of outreach

educational efforts ova the Kaiser. Plan in Portland, Oregon, in an

impoverished and minority p.--..,pulation also covered by prepaid group

practice. Although the experimental design was criticized (103), the

increased use of preventive services within the plan could not be faulted.

Some critics are convinced that only organized systems of care will offer

the maximum opportunity for preventive services for children; however,

data show that the doctorpatient relationship remains a critical factor

and should not be overlooked when the organization is developed. In

Slesinger's analysis of the utilization of preventive services by urban black

mothers, the highest use rate was found among those with a personal

physician (104). Organized group practices which maintain personal

8-14 848
physician-patient relationships may fulfill this requirement, which clinic practice ordinarily cannot. Nor is group practice an unalloyed blessing,. g. Tessler and Mechanic (105), in their study of satisfaction of clients in group practice, found that some of the bureaucratic factors, like long waiting times for appointments, were

sources of dissatisfaction despite clients' otherwise satisfactory experi- ences. It may be expected that the otherwise improved access obtained by

the elimination of payment barriers and improved organization will be offset by the bureaucratic obstacles. If preventive services for children are

to be expedited and if access to care for poor and minority children

improved, the bureaucratic obstacles must be recognized and dealt with. An additional organizational hazard improved access and utilization, and the bureaucratic consequences, are noted by Breslau and Haug (106)

in connection with delivery of pediatric services in an academic setting. Many of the same operational factors are at work as in group practice: fixed hours, shifting responsil3ilities for care as patients see different professional workers on successive visits, misfiling of records, and so forth. However, these, of course, are really challenges to effective organization, not arguments against such organization. Other experimental forms of service organization are reviewed in Adams (107) but his conclusions regarding the advantages and disadvantages of centralized versus decentralized mental health service centers for children are neutral_ Lewis et aL reported on a school health program in which the children alone were responsible for initiating care and followup

(108). Nc change in utilization was noted, but an improvement in

children's attitudes and beliefs regarding the health care system did occur. Alpert and colleagues reported a form of pediatric group practice for inner city children which resulted in decreasing hospitalization for these

children, increased use of preventive services, and improved care patterns as evidenced by the number of kept appointments (105. Among other types of organization, Novick and his colleagues reported on the conversion of a well-baby health station to a pediatric comprehen- sive care center which increased utilization of the center, improved

comprehensive care for the children, and provided a significant segment of a poor community with a continuing and customary source of care at modest cost_ The New F-nenvid Region developed a combined laboratory

service to facilitate the screening of newborns WO. The economic value of such screening through preventing the need for long-terra care is underlined.

Efforts have Av.:, been made to introduce preventive mental health

services (111) by engaging parents in organized health plans and enlarging

the scope of local hcAlth departments to carry out preventive efforts. Psychiatric News reported the organization of a new institution "The National Center for Clinical Infant Programs," where distinguished child psychiatrists have come together to promote the prevention of children's mental illness. A similar movement is afoot regarding child abuse and

neglect, with efforts to organize services better and focus on particular health professionals to provide such sec vices. LeBlang (112) describes a

similar multidisciplinary approach to finding and dealing with child abuse

in a "family stress consultation team" in Illinois. The team is a voluntary

S 5 849
agency with referrals from a public agency. The use of voluntary agencies

is rarely considered in the United States, despite their success in Europe

(113). The Dutch Cross societies are outstanding examples of the

effectiveness of voluntary agencies in recruiting competent professionals, involving parents in child care, offsetting public bureaucracies, and

providing excellent preventive service (114). "Historically, public and private providers of health and welfare services have functioned in

separate, often incompatible arenas." Burd and Richmond, who worked

in a private child guidance center, believe a coordinated effort is the most promising approach ( 115). Other countries report similar dissatisfaction with child health services

that fail to reach all needy children or provide all needed services. The Wynns (116) report on Europe emphasized organitional improvements

in services in Scandinavia and France. Kewley (117), in discussing child health services in Australia, showed that problems in organizing such

services are not unique to the United States. A thoughtful and stimulating approach to current pedv4tric problems, from a very different perspective, is presented in the George Armstrong Award Lecture, published in the American Journal of the Diseases of Children_ The author proposes reuse of some neglected and rejected

approaches. "Modern medicine," he concludes, "has made many signifi- cant advances. Our scientific revolution may hinge on choosing the most promising components from our evolutionary past and testing them

against our modern practices "(115). Literature on financing is scarce. Helen Wallace touches on the subject

in connection with perinatal care in this country and abroad (119), but the best collection of information on reorganizing child health services and

the impact of present costs on possible future costs is in the Harvard Child Health Project series (120. Other studies of financing have been related to matters such as the

impact of cost sharing (121), and show that in such a system preventive

services are reduced. A study was made of the costs of ignoring the prevention of birth defects based on estimates of the costs of treating them

(122). The multimillion dollar federally supported Crippled Children's program covered only a fraction of the treatment cost because only a percentage of the services were paid for by this program. Wallace (123, 124) analyzed expenditures for children's health services, showing them to be primarily a private matter. In 1975 only 15 percent of the cost was paid out of Federal funds. Furthermore, the funds allocated to the States under General Revenue Sharing were hardly used at all for maternal and child

health services, despite the fact that neither maternal and child health nor crippled children funds from Title V were increased sufficiently to cope with inflation.

IMPROVEMENTS BY WAY OF

MANPOWER CONSIDERATIONS

Chief among the growing number of recommendations regarding

change or improvement of child health services is the alteration of

C50

4%r*0
distribution of responsiliilities among various health professionals and the train' g of new or traditional but less widely used types of child care professionals. It has been proposed that the school nurse have an

expanded role (125) or, more specifically, a role in primary care and more

comprehensive care for children in school (126, 127). Some also suggest larger roles for physicians' assistants in child care (128), family nurse practitioners (129), and social workers (130_ The pediatric nurse clinician is recommended especially in dealing with abusing parents (131, 132) One writer (an epidemiologist) cautions

against immediate installation of the pediatric nurse practitioner without a

ilrield trial" and extensive evaluation (133). Others in the higher reaches of pediatric professional life urge immediate utilisation of the nurses so

trained (134). Still others continue to suggest that physicians assume more responsibility and adapt to the changing fashions of demand, diagnosis, and treatment for the families of abused children (135); in-school health services (136); and in providing the needed outreach to unreached families (LW). A military group analyzed the capability of Army corpsmen as diagnosticians using a physician-written algorithm and found an astonishingly high degree of accuracy (138). This promises productive use of nurse practitioners in screening and ether diagnostic services. More specific concerns in the area of organization of services derive from the present firm separation of family-centered child health care (pediatrician, out-patient, or group practice) from the sch Al health

service. In part this may be a reflection of the partial and often inadequate services of school health programs. Jr it may be the other way around: The partial and inadequate character of the school health services may reflect the determination of Americans to maintain family domination in child health care responsibility. Whatever the origin, the effects are disastrous multiplication of expense, duplication of services, and split of responsibilities. The lack of effective liaison and recognition of shared

responsibility results in failure to provide needed services. The shortcom- ings of existing school health services need no repetition here. However, the fact of the school's importance as a source of information about

children's health needs, as a site for establishing primary .are services, and

as an important focus for health education is, despite long-time recognition, only now becoming the subject of study and new program effort (138, 139, 140, 141). The school as an ideal place for identifying child

abuse is also suggested (142). Some attention is directed toward changing

the role of the school nurse, a development noted in the manpower discussion; some is directed at reducing fragmentation in diagnosis and

treatment, noted in the organ i7-A lion discussions above. Providing resi- dence training for pediatricians in a school or Head Start program setting may improve interest and coordination in the field (143). One aspect of child health care that is receiving increased attention, over the unyielding objections of the professionals involved, is dental services for school children_ An overview by the Dunnings (144) of New

Zealand's long-time use of dental nurses and newer efforts in Australia, Can-: da, and Sweden show that these nurses are beginning to have an impact on American thinking. Dental nurse practitioners in the United States would go a long way toward resolving the limited and discriminato851

8 .4 ;""It
ry pattern of dental services for children and could easily become part of a

unified school health service.

Some attention should also be paid to the failure of the Government to

adequately support child health services. Steiner (145) attributes this lack of effective support to public philosophy (no national advocacy group

exists), national policy (child development is not a primary national concern), lack of unified Congressional oversight, and lack of coordination in Federal agenciee charged with the fragmented responsibilities. No

single professional organization provides unified policy, guidance, or accountability.

STRUCTURING A NEW BASE FOR

CHILD HEALTH PROGRAMSRESEARCH AND DEMONSTRATION NEEDS

Attitudes about official responsibility for maternal and child health and medical care services have changed throughout American social history. Along with other aspects of social responsibility, maternal and child health have been seen as primarily a family responsibility; official participation is seen as an encroachment upon family rights, individual privacy, freedom, and individual initiative. Orphans and the poor, over whom the Government has been somewhat grudgingly allowed to extend

its protective wing, have been gradually provided more and more services. Even so, argument continues as to the worthiness of the poor to be

receiving such help as Government provides; health and medical care

services, like other welfare services, are often thought to encourage

laziness, fertility, and sloth. In periods of gingerly activity, funds and

services have been directed toward specific element; of the population

considered deprived or unable to provide for themselves, such as the poor, minority groups, migrants, rural people, or those living in "impacted" aims. Even in such cases, funds and services have been far from generous. In this century, national demand for special services for mothers and

children began with the first White House Conference on Children, under President Taft and after the establishment of the Children's Bureau.

Grants in aid to the States for specific child health activities began with

the Sheppard-Towner Act in 1922. Title V of the Social Security Act followed. Federal support reached a peak in the 1960's. Large sums of Federal money were appropriated, new programs designedM&I and C&Yfamily planning funded, abortion paid for out of Federal medical

care programs. Because, in the elegant locution of the 19th Century, "form follows

function," the structure of maternal and child health services under Federal auspices- reflected the goals of its designers. Anyone who could pay was excluded, almost automatically, because of traditional attitudes

toward Government paying for am) service. If one could afford it, he would presumably want to pay for it himself rather than accept a Government "handout?' Conversely, one had to be careful not to pay for

those who could pay for themselves, for fear the Government would be

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difficult to establish. Arden Miller points to the possibility of new

initiatives in local health departments (146). Health departments, however, will have to go a long way to overcome their attachment to concepts and resolves developed during the sanitary revolution of a century ago

(out of which such departments were born) if they are to meet the needs of

the 21st Century. Therefore, a number of topics merit thoughtful consideration but are

barely touched on in the literature reviewed. What shall be the future role

of State and local health departments? It has been suggested that States

become the vehicle for a radically reorganized approach to child health

care with the emphasis on preventive services (147). In the Steward and Crofton book, Delivery of Health Services to the Poor, the usual

recommendations are made, based upon maintaining the traditional child health care system (148). However, their discussion makes it clear that

they know the system will not respond sufficiently to promote preventive needs. "The current pattern of medical services in the U.S. is oriented

toward the treatment of acute and chronic diseases rather than through

the provision of comprehensive preventive health care services. The

findings from the literature review suggest that a full scale implementation

of a program of preventive health care services would require far reaching

changes in the context of education for health professionals . . . and the

organizational and financing mechanisms used to deliver medical services

to the general population." These sentiments are echoed in the article by Sundell and Homan (73). Not just a new deal, but a new deck to play with

may be required in this game. Schaefer proposes that not only health system change is required, but a

full scale "Child Development Program," with a sufficiently wide range to

include parent education and many different types of workers (149). The

failures of EPSDT and the recognition of the need for many more highly

specialized assessment centers as followup for screening procedures are underlined in the requirements of the recently mandated program for

education of the handicapped. Public Law 94-142, with its requirement

that appropriate educational opportunities be provided for handicapped

children, demands that appropriate screening and assessment be none to

ensure that every child in need of services is appropriately handled. A

great deal more will have to be done than we are now doing to meet this

obligation (150). The old fragmented ways will not do.

Attention has been paid to social and psychological factors that

influence children's health, families' attitudes, and treatment of children,

as well as how they affect access to care. However, something also must be

said about newly recognized environmental factors that may have a baleful influence on the child's health and future lifeenvironmental

contamination. This contamination extends to considerations not only of

lead, for example, but also of parents' working environment, from where

carcinogens or other toxins may be brought home, and whether such toxic

agents in the workplace may influence the genetic substance of mothers or

fathers (151, 152). A good deal of investigation will also have to be done to determine what

preventive and therapeutic services children will be entitled to even before

the improved system for child health services can be designed.

854
What dements in the social and psychological makeup of the

family (what makes them "vulnerable," for example) can be

clearly identified? Which environmental factors need to be avoided during pregnan- cy, in child care, and even earlier, if the genetic material itself is at risk?

How can the rise in teenage suicide be accounted for? What social programs such as nutrition and family grant support are most critical and might be most useful for community

experiments? What economic studies can establish costs for various modifications of child health service programs? Showstack et al. (153)

review fee-for-service reimbursement and come to the conclusion

that we must "create a more uniform, rational, and efficient system of paying for physician services that will be based on the goals of high quality, accessibly, and efficiently delivered health

care."

SUGGESTIONS FOR RESEARCH AND FOLLOWUP

The fact that the bulk of papers presented since 1975 and books published in regard to child health simply shore up earlier descriptions and analyses rather than provide new views, concepts, or proposals is a

significant finding in itself. It suggests that we already have as much

information asand perhaps more thanwe can effectively process

regarding the problems and needs in the area of children's health. The poverty of imagination, or lack cf variation on earlier responses to the problems, suggests that the difficulty in implementing improved child health services and remedying the deficiencies in child health in the United States do not arise from lack of information as to what needs to be

done or what can be done. The difficulty lies with social policy, attitudes

towas z clOcIren, and innate defects in the structure of the medical care

and health s. vices system. Policy studies of child health services are relatively rare. Except for the publications from the Yale Health Policy Project, occasional pieces in the Harvard Child Health Project, or such commentaries as the Newberger et aL essay, no one has challenged the status quo of child health service programming. Sir Oliver Lodge once noted that the last thing a deep sea

fish would discover would be water. The basic beliefs upon which existing

child health service programs are founded and proposals for improvement or modification based on those beliefs need to be examined. The primary

research effort should address (a) universal child health programming

versus a universal health program as a national policy, (b) within that, exploration of social attitudes toward children that obstruct or might facilitate effective programming, and (c) political factors that influence

change with particular reference to children's services. A series of topics suggest themselves as fitting into the rubric of policy

studies:

The economic value of prevention in childhood and the long-term

855
effects of preventive services on children and the adults they

become.

The suggested preventive measures and their effectiveness, including outreach, family guidance, special attention to vulnerable

families, and school health education procedures. Sociological attitudes toward childr,-, and sources of difficulties

in developing national advocacy dons and measures for

children.

Professional sacred cows such as it and cost effectiveness

of a unified preventive-curative se. ;:.rsus separate preventive and curative service. Are physicians necessary in a preventive

program for children? What about pilot home birth programs to

be assessed?

Recognizing that collective services are administered better than

individualized provision of services, what should be the nature of

the group structure and how large should it be? What is the

optimal composition? What kinds of training within disciplines

lead to greater cooperation among disciplines? What kinds of cost estimates can be made of the operation of

various programs? What sources of funding should be tapped? How can public and private resources be combined to guarantee

fiscal solver--:y? Public roles and the structuring and restructuring of health

department activities, including the roles of nurses, doctors,

midwives, and others. Private roles including considerations of a voluntary agency

structure for child health. Nonprofit or profit? Community based, indepedent self-forming groups, standards for charter or licensing? National, State, and local organization and control including

consideration of a national organization with regional, artificial

geographic limits? Considerations of ethnic and cultural diversity in planning and

implementing programs: pluralism in program design or uniformity of design and pluralism in staffing and operations? The White Report concludes with a series of recommendations that

derive L.:1m the overall interest of the investigators as much in child

developmew as child health, but the recommendations are not very

different fror kt we. Social factors have an impact on child health

that is not . understood. Some of the needs, for instance those

related to trition, would not exist as medical problems if effective

social actioliI em ...zed proper feeding of all children. Should such action be

financial (family anow-ances), nutritional (feeding programs for children

plus nutritional education in the schools), or a combination? Will this in

turn reduce morbidity and mortality from infectious disease, regardless of

whether there is (a) added impetus to an iinrauniz. ation program, or (b) a

comprehensive program of child medical care services to ensure immunizatF:nz as well as treatment once a child is sick? We can only know by

trying to contrci the results in field trials of great magnitude. Perhaps an

existential approach is better. Can we get sufficient con:unit-nen: and

action to provide social programs that would guarantee a nutritional

856
result? Doubtful. A large scale pilot program? Possible. We slintIld try. Can we reform the medical cP.ze service system for children to accomplish

as much as that system car. provide? Possible. Let's try. White et al. note "a basic characteristic of this field: the inseparability of problems from the services designed to solve them." Therefore, their recommendations include questions to be resolved on coordination of

health services with other services such as education and day care. They would like to see research directed at priorities if choices have to be made.

What areas of intervention are crucial, and should be attacked first? 4:Prenatal care? preschool? medical care?) If choices must be made, are

there groups of children who should have priority? The poor? The minorities? The handicapped? Can the system be better changed by

influencing the larger medical care system than by focusing on children's

services? (Financing? Manpower? Community involvement?) It does not resolve the dilemma of universal versus targeted action. However, experience with targeted problems suggests that two classes of care

eventually result. Their recommendations therefcrre aim at several tiers: improve and

increase nutritional programs, improve and extend existing child health

programs, develop comprehensive medical care programs, and diversify

pediatric manpower. Clearly, the White Report aims at action. It does not ask for more study or mc:-.c research. The same is true of the Children's Defense Fund

Report. It takes for granted that the deficiencies most seriously affect the poor, the minorities, the rural isolated children. It recommends changes in

financing to ensure universal eligibility, comprehensive benefits, incentives to use the most suitable care, outreach and support services, and

special assistance for hard-to-serve areas. The Newberger et aL essay poses a few questions that wolid benefit from research, such as, "To what extent will efforts to improve the health

and quality of the life of our nation's children succeed in TTIAking their

lives more productive and I... my?" However, the essay also is a "how to" exercise. Enough is known, Ai. is time to act. "The evidence is unequivocal that poverty and/or membership in a racial minority not only increase the

likelihood of a serious or fatal physical or mental health problem, but appear also to compound the negative effects of virtually all the

conditions which predispose a child to further risk." Furthermore, "Children's health and productive functioning are embedded in a social and economic context which can support or inhibit the development and

the expression of their innate potential."

In short, previous collectors and assemblers of the literature regarding

child health needs have reached similar conclusions: Social commitment

to children is lacking in terms of financial and nutritional support and the

like. The literature pleads for equity in the provision of an3 access to

health and medical care services for all children. Such proposals do not usually deal with critical judgment of traditional solutions, but recom- mend more more money, more staff, more distribution of existing plans and programs, more organization, more of the same. Leonard Blumberg, in casual comment as part c,a ;ook review (154) struck a chord: "The changes that social reformers seek might be

857
fundamental if they were instituted all at once, but they are committed to

in,crementalism; they argue that they r re defending the highest values of

the society. in short, they arc moderates parading in radical clothing."

The above recommendations for research also reflect recognition of the

long-standing character of the findings that poverty and minority status

stand in the way of good health and of good care when health breaks

down and that maldistribution of resources impedes solution. Given the

bits of evidence from the few policy studies that have been made, the

solution will not be found in "more." However, to determine whether

more of something is in order, and what else might be done or in what

way, these research suggestions have been made. A proposal is made for

testing different structural solutions as well.

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860

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U! -$3°M JO 1tOI12!at1JOS WU.fflOf JO IW1H Pat i'°S :(p)L1 . 
(13$ Meyer. R. J. "Acoeptieg the Challenge of Child Abuse end Neglect: A Gold.'' for

School Health.' .kruesaal ofSchool Health 4110. October 1979.

(137) Hank. M. and J. Fromm. "Outreach by Primary ire Physician." Journal of tbe American Medical

Aesociaboe 233: 256-239. 1978.

(136) 91-darna, F. P.. L. 0. Wilson, A. D. Butler. and L. Caneles. "Algorithm-Directed Triage of Pediatric

Patients: A Prospective Study.:' Journal of the AlbetiClia medical Asaccialie 24n: 1528-1531, April

13. 1980.

(130) The Robert Wood Johnson Foundation. Sp.c . t Report No. 2. Regime/re' ad Perinara/ Services.

1978.

(1417) Nader. P. R.. S. Gilman, and D. E. Bee. "Factors Influencing Aucess to Primary Health Care by a

School Health Service." Pediatrics 65: 585-591. March 1980.

(141) Gilman, S. and P. R. Nader. "Measuring the Effectiveneer of a School Health Program Methods

and Prefisnitar,r, Analysis." Journal pi-Scientific Health. 49(1): 10-14. January 1979."

(142) Reader. G. 'School Health Education." Forum on Medic' int!. 3: 354-357. May 1980.

(14:11) Bask J. L.. L. Bergen. M. Tanenbaum, K. A. Mabee. "Head Start. Day Care. the Public School.

Emensions of Pediatric Residency Training.' Clinical Pedistrics, 17(8): 639-642- (14* Dunain; J. M. and N. Damning. An International Look at School-Bared Children's Dental

Services.' American Journal ofPubbc Health 68: 664-663, July 1973.

( 1441) Steiner, G. 'The Children's Canoe. Washinston. D.C: The Brookings Institution. 1976. (14$ Irai l r, A. Preaentation to the Select Panel for the Promotion of C '4 Health. 1930.

(147) SaVer. G. A. 'Politics and Social Policy: Failures in Child Hes Services." From Yale Health

Policy Project. from a grant from the National Center for 1 11 Services Research. Grant

5-R011-10-00900-01 /4.

(1411) Stewart. J. C. and L L. Craton. Deli-,ery of Health Care Se:- 'ices to :he Poor: Fin:: ngs from a Arnim- of the Current Periodical Literature. Austin. Tea.: Center for Social Work Reams:fit,

Graduate School of Social Work. 1975_

(149) Schaefer, E. B. "Pmfesionel Paradigms in Child and Family Health Programs." American Journal

of Pith& Health 69(9): 849-850. 1979.

(150) Palfrey, J. s., R. C. Merritt, and J. A. Butler. "New Directions in the Evaluation and Education of

Handicapped Childress"" New England Journal of Medicine 298(15): 319-824. April 13. 1978_

(151) Hunt V. Occupations/ Health Prot:lien's of Pregnant Women. Washington. D.C., Department of

Health. Education, and Welfare, 1975.

(152) &damn, J. AL Wousues Work Women's Health. New York: Pantheon. 1977.

(153) Showstack. J. A., Blumberg, B. D.. Schwartz. J.. and Schroeder, S. A. "Fee-For-Service Physician

Payment: Analysis of Current Methods and Their Development." Inquiry 16(3): 238-246, Fall 1979.

(154) Blumberg. Leon. Annals oi the American Academy of Political and Social Science. 447: 135-136.

January 1980.

BIBLIOGRAPHY

Cowen. E. L.. R. P. Lotion. and A. B. Wilson. "Knowing. Lilcing. and Judged Problem Severity in Relation to Referral and the Outcome Measures in a School-Based Intervention Program." Journal of

Consulting and Clinical Psychology 44(3): 317-329. June 1976.

Davis. K. and R. Reynolds. 'The Impact of Medicare and Medicaid on Access to Medical Care." In The

Role oiliest& Inastrance and the Health Services Sector. P. N. Rosen. ed. New York: National Bureau

for Economic Research. 391-435. 1976.

Dutton. D. B. "Patterns of Ambulatory Health Care in Five Different Delivery Systems." Medical Care

221-243. March 1979.

"*Guidehe, s on Educational Preparation and Competencies of the School Nurse Practitioner." Journal of

School Health 48(5): 265-268. May :

Kempe. C. H. "Child Abuse-The rediatrician's Role in Child Advccacy and Preventive Pediatrics."

American Journal of doe DiSeIRSCS ofChildren 132(3): 5-260, March 1978.

Kempe, C H. "Recent Developments in the Field of Child Abuse." Child Abuse sad Neglect 3(1): ix-ev

1979.

Lewis. D.. G. C. Cypress. H. Joseph. R. C. HAMS. S. Sherry, N. Kaback. M. Michael. H. Seidel. and B.

Garrett. "Health Needs of the Child in Foster Family Care?' Pediatrics 59(3): 465-466. :977.

McKinley. J. B. "Who is Ratify Ignorant-Physician or Patient?' Journal of Health and Social Behavior

16: 3-11, 1975.

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Melon M. K. and C. S. Hecker. inimaltb Status, Health Resources. and Consolidated Structural

Pa -s: Implications kr Pub& Health Cars Policy." Pommel of Health and Social Behavior 19:

v,. Suptasaberr 1978.

Novick. L. 17., A. Mosta link and d. Eidev-"d. 'Converting Child Haab Stations to Pediewic Treatment

Cenesee.' Medical Catel3(9): 744-775. September 1975

Rabin. D. L. P. J. Bash. and N. A. Fuller. -Virus Prescription Rates Before and After Enrollment of a Medicaid Popsdution in an HMO.- Public Health Reports 93, January-Febnaery 19'$.

Slaslicsko. P.. A. -Dynamic AspecteorChildrest's Health. Intellectual !Development. and Family Economic

Staub NINER 451. February 1980.

Madmen, E. G., 3. W. Wicks. and D. 3. Adamchalc. -.Research Needed on Socioeconomic Differentials in

U.S. Mortality." Pubbc Health Reports 93(6): 666-672. Novereber-December 1978.

-Went tuserventioa New Goa.- Psychiatric News, 5-10. November 2. 1979.
NATIONAL INFORMATION

NEEDS IN MATERNAL

AND CHILD HEALTH

by NICHOLAS ZILL AND ROBIN Mourn'

INTRODUCTION

How Healthy Are Children In The United States?

To answer the question "What would we like to know about child health in the United States?" it is necessary to know first how healthy American children are and how their health status has changed over time. This seems simple to answer, but the progress that has been made in

improving child health has made this more difficult to determine. When

many children died in infancy or childhood and even more contracted

serious infectious diseases or were malnourished, health could be simply defined as the absence of disease or illness.

Today, most of the children who are born in the United States survive infancy and childhood and relatively few develop any serious disease. As these changes have occurred, definitions and concerns about health have broadened to include more than mere survival and extend to questions

regarding normal growth and development, school performance, mental health, and the prospects for a child's becoming a positive and productive member of society. in addition to information concerning the health status of American

children as a whole, a growing interest has developed concerning social, economic, and geographic differences in health status. Health differences between children from affluent and educated families as opposed to those

from families with little education or income arc of interest as well as how the health of black and Hispanic children compares with that of nonminority children. Furthermore, how child health measures vary within and among cities and States is also of interest. Several reasons have led to the interest in group and geographical differences. The first reason is a concern with social equity. The United

'CHILD TRENDS. INC, 1990 M Street. NAV. *700. Waihington, D.C. 20036: Telephone (202) 223-

AW:10-

865

C I
States as a society has made a commitment to the effect that the color of a

child's skin or the income level of the child's family should not in

themselves be barriers to a childhood free from physical pain and

disability. Child health can be employed as an indicator ,o learn about the

progressor lack of progressin achieving these goals. A second reason

for the interest in group differences is that they may help to clarify why

some children remain healthy and others develop diseases or handicaps.

The question of causality in disease is usually more complex than the

simple description of how one group differs from the other or how health

statistics change from one year to the next. The interest in geographical differences in child health stems from the

fact that much of the political decisionmaking and administration of

health care resides at the State and local levels. Governors, mayors, State

legislators, county executives, local health officials, and citizens want to

know how healthy children are in their jurisdictions, especially in

comparison to other, similar jurisdictions. Environmental issuessuch as

air and water pollution, nuclear and chemical contamination and the

like--have also spurred the interest in local health statistics.

What Kind of Care Do They Receive?

The second major type of information about child health concerns

access to and use of health services. How often do children require

medical care and for what reasons? Who gets care and who does not?

How do the -,ualitati...e characteristics of care vary? And, how much do

services cost and who pays for them? In addition to national health care

statistics, a great interest has arisen in socioeconomic and ethnic

differences in relation to the access to care and in how medical care varies

across geographic areas and political jurisdictions.

Do Health Programs Make Any

Difference?

For policy decisions and program evaluation the most useful information is that which combines child health care data with child health status

data. Supporters of Federal or State child health programs attempt to

measure program impact primarily in terms of reduction in human

suffering. Economists and cost accountants are more interested in

measures of benefits relative to cost, and many critics, seeking to

demonstrate that the programs are inefficient, focus their attention on

management and administrative data. Information about the effectiveness

and efficiency of child health programs is more difficult and expensive to

obtain as well as more .s pen to dispute than is information on simple

differences over time or by geographic areas. At the same time the former

type of information is in higher demand.

86o
THE ABSENCE OF ACCURATE INFORMATION

FOR MANY HEALTH ISSUES

Many constraints, limits, and problems are associated with collecting valid health information. Data are often requested regarding new and

controversial issues. For new areas, however, accurate data can often be

difficult to acquire because a basic understanding of health principles is

lacking. Determining the appropriate methodology and analysis for gathering

data can be zhallenging. If a well-designed methodology is not thoroughly adhered to, information will be inaccurate and can lead to false

conclusions. Numerous examples of past data collections can be cited that show poor design and administration, which ultimately yielded results with limited usefulness and accuracy.

Controlling for Social and Environmental Variables

Although medical knowledge and technology have increased enormous- ly in the last 30 or so years, development in the biological sciences has

been insufficient to answer many basic quest! such as those relating to

the etiology of disease in individuals and poi- This makes it more

difficult to specify the kinds of measures and c most needed.

Data for some studies, such as the effects of nutrition and preventive practices, are best collected through prospective experimental studies that attempt to unravel the influence of the environment, genetic composition, and individual behavior on health status. The interactional nature of

health makes isivating the variables associated with a health problem

extremely difficult. Only carefully desig,red research that controls for

impinging background variables is able to produce valid data. Employing an experimental design is not always feasible, however, because of ethical or practical problems. Such studies are also time

consuming and expensive. Where data cannot be experimentally collected, it is sometimes possible to substitute other methods which provide some, though weaker, evidence for causal relationships. For example, statistical techniques allow inferences to be made about possible cause and effect

from retrospective and concurrent studies.

Lack of an Adequate Classification System

Diagnostic tests and uniform classification systems have not been

developed for many new health issues, which further deters accurate data

collection. This is especially so for "new morbidity" (1) conditions in child health, such as hyperactivity, dyslexia, or allergies. A lack of standardized

definitions or systems of classification creates difficulties for the collection of reliable data on the prevalence of new morbidity conditions. Even when

4t: a 867
disability. Child health can be employed as indicators to learn about the

prevalence reflect an actual increase in incidence and not an increase in

the awareness of the condition or problem. For example, the recent

increase in the number of reported cases of child abuse may reflect an

increased awareness of the phenomenon rather than an increase in actual

child abuse incidents.

Fragmentation of Data

Data from government health care programs arc often incomplete

because of the fr-P.sirnentation of health care services and the fact that the

same program may vary across different States or regions in ways which preclude State-by-State or region-by-region comparisons. One way to

overcome fragmentation is to base data on a standard unit of analysis that would remain constant in varying circumstances. For example, using the

individual child as a unit for analysis would make comparisons of

programs easier. Small scale studies using a mixture of concepts, methods, and samples will not provide the basis for describing child health or evaluating

program effectiveness. If real progress is to be made in tackling complex, multifaceted questions, large-scale collaborative research is needed that

makes use of standard terms and definitions, comparable methods, and

suitable techniques of analysis.

METHODS USED TO PROVIDE HEALTH

DATA FOR CHILDREN

Several widely used methods exist for collecting data on the prevalence

of health conditions, the need for and use of services, the effects of

treatments, and changes in health status over time. The methods include

self-reporting or parents' evaluation for children, doctors' reports, administrative records, laboratory tests, and reports of observed behavior. All

these methods produce data that have some value, although each method

has its limitations. Most of the methods depend on the reporting of

conditions classified into categories and given specific labels. The better

the classification system and the wider its acceptance, the better the

quality of the information. Laboratory testing is the most highly developed tool for measuring

some aspects of health status. Unfortunately, for many important

conditions, adequate tests are not available. Laboratory tests are also

limited even in the kinds of information they provide. For example, they

do not provide knowledge about the level of discomfort a condition causes

or the degree to which the patient experienced disruptions in his or her

regular activities. In incidents where adequate diagnostic tests have not been developed

for health conditions or problems, clinical judgment is the best method

for determining the presence of the conditions. Trained observers can
more accurately assess health conditions than can children or parents

reporting for themselves. Such observations, repeated over time, can also be used to determine long-term trends in health status, as long as no

change occurs in the clinical criteria employed. Observation techniques employed over time can be used to develop

knowledge about health status changes and how health conditions affect children at different developmental levels. This is necessary because general health and environmental conditions can change rapidly during

childhood and adolescence. Stanfield (2) has shown in an analysis of data collected over a 10-year period that many children with high use of services recovered from serious conditions and no longer needed services, - whereas other high users remained ill and continued to be high users of medical care. Those children recovering from conditions passed through various stages of health care needs. For children remaining ill, however, their own maturation processes meant that their health needs were also changing over time. The information reported by doctors can be useful for determining the prevalence of some conditions but is unreliable for others. Studies of the diagnosis of children's psychiatric disorders, for example, show that among different psychiatrists, low levels of agreement occur even when they applied the same classification system (3). The limitations of patient record systems also introduce problems of validity in measuring health conditions. In a recent study of Medicare

records, only 57 percent of the claim forms contained the correct principal, diagnosis (4). Such low validity suggests that this method of data

collection would lead to inaccurate knowledge about the frequency of various health problems in the population. Another source of discrepancies in doctor reports is that doctors rely, in part, on the ability of parents to accurately describe symptoms. Because patients vary in ability to articulate their health problems, a doctor's

ability to -elicit this information may also be a factor affecting diagnosis. Evidence suggests that physician reports of some conditions increase as

the income and education levels of patients increase. In a reanalysis of data from the Health Examination Survey of children 6-11 years of age collected in 1963-65, Grossman et al. (5) found a positive association between family income and the number of physician recorded health

conditions for certain health problems such as allergies. However, these data were derived from the health history segment, which relied on the parents' reports to the doctor and not the actual physical examination

itself. Possibly, parents with higher incomes were either more aware of or better able to report these health conditions. In actuality, the upperincome children, based on physical examination, were not less healthy as a whole, and, in fact, low-income children displayed significantly more

abnormal conditions when examined (6). If doctor reports are subject to biases, then self-reported data are even

more affected by individual perceptions and awareness. Individuals more knowledgeable about health problems, symptoms, and early stages of health conditions are likely to report a higher incidence of conditions in

themselves or their children. Reports by individuals are also affected by

869

8 'Li
the amount of information received from the doctor. Those who have not

seen a doctor will in most cases be less able to put a medical label on

symptoms. The degree to which specific terminology and standard definitions are

universally accepted affects the reliability of self-reported and doctor

reported data. Common terminology is partly developed through communication between the individual preforming the diagnosis and the person

being diagnowri. A recent study conducted by the Foundation for Child

Development (7) demonstrates that in the area of child health a wide

variety of labels are used. Data reported by teachers and parents on

limiting conditions in children showed only a 22-percent agreement. Even

for mental retardation, a child health concern for many years, agreement

between parents and teachers as to which children were mentally retarded

was so low that teachers reported over four times as many such children as

eid parents. Parent education level and ethnic background appear to be factors that

affect the degree of agreement. Parents with less than a high school

diploma agreed with teachers 13 percent of the time whereas parents with

some college education agreed with the teacher 27 percent of the time. For

black children, parents and teachers agreed only 9 percent of the time.

The report siates that, "As far as black children with limiting conditions

were corezerned, the parent and teacher responses to the same questions

concerning the same children were essentially unrelated" (8).

These results demonPirate the problems associated with self-reported

data when stand'.rdized definitions neither exist nor are universally

accepted. Under -these circumstances, the use of self-reported or parent

reported data can lead to mislead,;.ng conclusions. An analysis of data

gathered in the 1976 Survey On Income and Education showed that poor

black parents reported fewer chronic conditions for their children than

poor white parents (9). From these data it was concluded that poor blacks

were healthier than their white counterparts and the report stated, "The

results of this study could have major program-implications for Medicaid,

Aid to Families with Dependent Children and local health programs"

( / 0). A reexamination of these data indicates that other factors may influence

the ability cl parents to accurately report the health conditions of their

children (11). For instance, large differences existed in the number of

chronic conditions reported in differf,n.t regions of the country. These

regional variations, in turn, were strongly related to the number of doctors

practicing 11 each region. Where the ratio of doctors to population was

low, parents reported fewer illnesses for their. children. Also, as the ratio of

doctors to people declined, the disparity in the rates of reported health

conditions between blacks and whites increased. The large differences in

chronic conditions for children by various ethnic and regional groups

appeared too dramatic to be r. _,turally occurring variations in health,

especially considering the fact t.:.at each group of children was living in

conditions of poverty. The observed relationship between the number of doctors and the

number of reported conditions may reflect either the access to or the

utilization of care. Therefore, the use of self-reported data for determining

870
the prevalence of chronic conditions may be misleading and biased. If, as

the data suggest, those receiving the least amount of care are unaware of

specific names or labels for health problems and therefore are unable to

report them accurately, then the conclusion that those reporting fewer conditions are healthier is probably incorrect. This illustrates the errors

that may result when conclusions are drawn from collected data that were

based on an unreliable methodology. The method of self-reporting, however, is not an inaccurate means of collecting some kinds of health data. Knowledge about health attitudes and behaviors, utilization of services, feelings of discomfort, and perceptions cf health status are all important and best reported by people

themselves. Though the reporting of a condition like pain is subjective, the

level of perceived discomfort is a fact of real importance in defining health

status and explaining health related behavior (12). In summary, a variety of methods may be used to provide health data on children. Each method is best suited to certain research questions or

topics. A combination of methods is required to provide a comprehensive picture of children's health and medical care.

HEALTH PROGRAM EVALUATION DATA

Government policy makers and planners often seek information on the effectiveness of health programs. The usual method requires program

administrators to report certain data to the relevant government office, which then performs the analysis. The need for information about many

aspects of health care programs has resulted in an increase in the amount of reporting required, Often legislators and policymakers have little idea of the feasibility of accurately obtaining the information that they request. As a consequence, a large amount of useless information is collected and policymakers are frustrated because these data do not provide the basis

for answers to their questions. John Kearn, of the Senate Finance Committee staff, voiced a common complaint among congressional staff members: "With the vast amounts of information collected, we still do not know anything about the management of programssuch as how many

children we are serving and how many we are serving twice."2 The principal reasons why vast amounts of data fail to provide useful answers are the large degree of autonomy granted to States and program

sites and the large overlap in services provided by various programs. Such variation and overlap make it difficult to find a common denominator

that can be used for comparisons between or summations across program

sites. For this reason, data concerning any given national program are

often limited to the total dcliais spent without details on what services were provided or how many children were served. Data can sometimes be collected on what services- a State, region, or county provided regardless of which program funded the service. Under

these circumstances, similar services can be added to produce a broader

2Kearn. J. Personal communication.

871
picture of health services delivered to children. Such data can provide a

basis for State comparisons and answer some additional questions

concerning what services children are receiving for the total amount of

money being spent. Even data on services, however, are limited in their usefulness. For

example, such data do not distinguish between one child using health

sources five times and five children using them once. Because this kind of

information is important for determining program effectiveness in terms

of the population served and for comparing programs across the country,

data should be collected for the individual child. Then questions could be

answered about the number of children being served, the cost of

individual treatment, and the number of visits made by each child

enrolled in a program. Children receive care from programs funded by State, Federal, and

private sources, with each source maintaining separate records. Therefore,

trying to obtain a comprehensive picture of a child's health care is practically impossible with presently available data. If programs themselves overlap, provide fragmented services, and have varying eligibility

requirements, reported data will reflect this. Only by identifying the

individual child and following the child through the health care system is

it possible to know all the various programs and services that he or she is

utilizing. For this remon, health records for individual children in

government health care programs should be coded by health ID numbers.

Such a system would allow for linking of records across programs,

constructing longitudinal data on individual cases, and determining the

frequency of appropriate followup care. However, because such a system

would focus primarily on low-income families, opposition to the proposal

has arisen for ethical and legal reasons. As long as extensive program

fragmentation continues and no acceptable system for identifying individuals is present, child health data collected. through program reporting will

not provide a comprehensive picture of child health services.

The limited usefulness of program data has caused frustration and led

to misguided demands for the collection of more information rather than

less. Burgeoning reporting requirements for programs not only fail to

provide useful data, but indirectly threaten program success. The

estimated yearly crest of reporting Medicaid service and eligibility record

data is $300 million (13). In addition, some doctors refuse to treat

Medicaid and other service program patients because of the time and

money involved in processing required forms for such patients. Dr. John

P. Connelly of the American Academy of Pediatrics reports that because

of these costs, some doctors have abandoned their inner city practices

after many years of work.3 Because these reporting systems have been legislated by the Congress,

modifications in data collecting and reporting will not be accomplished

quickly. However, some legislators are aware of the problem. David Schaffer, health specialist for Senator Ribicoff, has suggested that

reporting systems be periodically reviewed and evaluated so that the

3C.onnelly, J.P. Personal communication.

872
collection of data judged invalid or not useful could be eliminated.4 This would streamline legislative requirements, reduce the burden on respon- dents, and allow flexibility for developing new and more useful forms of data collection. AT present, legislators are constrained in their attempts to request the collection of better information because respondents are already overburdened with paperwork.

ADVANTAGES AND DISADVANTAGES OF CURRENT CHILD AND MATERNAL

HEALTH INFORMATION SYSTEMS

A number of Federal data systems have been developed for regular collection and reposting on health statistics (14). It is important to be aware of the strengths and limitations of such health information systems for providing information on the status of child health.

Birth and Death Certificates

The vital statistics system, which compiles and analyzes information from birth and death certificates, is a main source of information

concerning child health. Certificates are issued locally and the information is forwarded to State statistical agencies and from them to the Vital Statistics Office at the National Center for Health Statistics. The usefulness of the system depends upon the availability of comparable information from the various States. Whereas substantial variations still exist, some important information is now available in standardized form from all States.

Examples of child health indicators that are derived from birth certificates include:

The number and proportion of low-birth-weight infants in the population The number and percentage of children born to teenage mothers, and

The proportion of babies whose mothers receive no prenatal care until late in the pregnancy

Indicators based on the vital statistics system have important advan- tages. First, the data come from all localities and areas in the United

States. They allow comparisons to be made about health conditions at the local, State, and national levels. Also, these data have been compiled for many decades and are the best source of information on long-term trends

in child health. However, vital statistics also have a number of limitations. Obviously, they depend upon the extent, completeness, and accuracy of the information that is entered on the certificates. Analysis according to family income is not possible, for example, because no income informa- tion is recorded on the certificates. Ethnic breakdowns are difficult

4Schaffer, P. Personal communication.

9

873
because some ethnic categories have changed over the years. Before 1979,

Hispanic individuals were hard to identify from birth or death certificate

information. Since 1979, data regarding Hispanic origin is available in the

19 States that have substantial Hispanic populations.

Moreover, birth and death certificates reflect only the births and deaths

of children in a given time period. Is it safe to use such data to make

generalizations about the condition of most children in a given place at a

given time? In the past, at least, the infant mortality rate has served as a

useful indicator of general public health conditions in an area. As the

infant. mortality picture has improved, however, the statistic has become

less useful. Infant mortality rates have been well publicized and regional

and international comparisons are used to indicate living conditions. With

this in mind, a danger exists that over reliance on this one indicator can

lead to policies that may improve the survival of infants born at risk but

do little to improve their quality of life or the health of other children.

Nonetheless, the vital statistics system is the backbone of the child

health information system and continues to provide much useful information about changes in the health status of children.

Epidemiological Studies

Another traditional source of information on child health is the

reporting of selected childhood diseases to city or State health authorities

or to the National Center for Disease Control in Atlanta. This information

is used to either look for the cause of, chart the course of, or attempt to

control "epidemic" disease. Over the years, the dramatic declines in the

rates of a number of childhood diseases such as diptheria, typhoid fever,

tuberculosis, and polio have been well documented by these data. A

fundamental problem with the system as a source of childhood indicators,

however, is the great variation in completeness of reporting, because

reporting to the National Center for Disease Control is voluntary. For

example, of all cases of measles that occur in the United States, only an

estimated 10-15 percent are reported to the center (15).

Household Interview Surveys

Another method for collecting information on child health is the use of

personal interviews based on probability samples of the population.

Whereas sample surveys have been done at the State and city levels, the

most frequent type of survey is nationwide. The National Health

Interview Survey is a continuing nationwide sample survey that collects

data yearly concerning approximately 116,000 persons in 40,000 households. Approximately 35,000 of these persons are children under 18 years

of age. This survey is especially useful as it includes descriptive demographic

information such as sex, age, years of education, family income, ethnic

group, etc. Data are gathered about illnesses, injuries, chronic conditions

874
and impairments, use of health services, and other health topics. These data permit detailed tabulations of health status and analyses of the

relationships between health and social and economic factors. Despite the use of large samples, the Health Interview Survey does not produce statistics at the State or city level. Some States have done interview surveys of their own, and others are moving in this direction;

this is a relatively recent development and thus far has been limited to a

handful of States ( 1 6). The accuracy of data from such surveys is dependent, of course, upon the accuracy of respondent reports. The National Center for Health Statistics has done extensive studies to improve the accuracy and reliability of such reporting. For example, the center found that respon- dents remember and report such events as doctor visits or days lost from

work because of illness more accurately if the recall period is limited to 2 weeks prior to the interview. The accuracy of parental reports of child illness appears to be related to such variables as the parent's education

level. Differences in reporting have also been found between mothers and fathers and between black and white respondents. Other limitations with the Health Interview Survey pertain to the measures and questionnaire content. The survey uses "limitation of activity" as a measurement of disability. This measure is less applicable to younger children because they neither work nor go to school, and no routine activity is present to be limited. Whereas the Health Interview Survey h.- s collected information about disability, it has devoted few questions to the measurement of another fundar-aental aspect of health, namely discomfort. The household survey would seem the logical place to gather information about health problems that cause pain, irritation, worry, or other distress, but the National Center for Health Statistics has

shied away from these topics, probably because of their subjective nature.

Health Examination Surveys

The Health Examination Surveys combine interviews with physical examinations that are conducted at mobile examination centers. Because of the need for these mobile facilities and specially trained staff, the Health Examination Surveys are costly and time consuming. Yet they

provide information that is not available through any other method. Two major examination surveys of children and youth were conducted during the 1960's. In 1971, the Health Examination Survey was renamed the Health and Nutrition Examination Survey (HANES), reflecting a new emphasis on collecting diet information that includes biochemical assessments of nutrition. Although the Federal reports from such

examinations have been released slowly, they have provided an extremely

rich source of information concerning the health of children and youths. Furthermore, raw data from the examination surveys of the 1960's have undergone secondary analyses focused on a variety of specific issues. The

examination mechanism allows for objective and reliable measurement of

height, weight, blood pressure, skin fold thickness, number of decayed or

875
missing teeth, and other health iarlirators. It also allows for the detection

of physiological abnormalities &id disease conditions of which the child

and family may be unaware. Whereas the standardized examination is more reliable than the typical

physical checkup in a private physician's office, its reliability is far from

perfect. During the Health Examination Survey of youths done in

1966-70, about 5 percent of the older children were given duplicate

physical examinations. The National Center for Health Statistics reported

the following: Comparison of the diagnostic impressions from these two examinations by the same or different examiners showed a high level of

agreement for such assessments-69 percent considered essentially

normal on both examinations, 15 percent abnormal (significantly)

on both, 7 percent abnormal only on the original examination, and 9

percent only on the reexamination (17). This implies, however, that of those children who were found to be

abnormal on either examination, only 50 percent were found to be

abnormal on both examinations. Thus, the physical examination is not

perfectly reliable for assessments of child (or adult) health even when such

examinations are tightly controlled and standardized.

Sample Surveys of Health Care Providers

The National Ambulatory Medical-Care Survey (NAMCS) is a sample

of office-based patient care physicians who voluntarily fill out a short

form describing each patient visit occurring during a randomly selected

week of the year. It does not provide a comprehensive picture of child

health care because it excludes hospital-based physicians and clinics, but

it has provided much useful information about general patient care in this

country. For example, the 1975 survey showed that nearly 41 percent of

the doctor visits of children in the first 2 years of life were for well-child

examinations. At 2-5 years of age the number of office visits per child per

year was approximately one-half the rate for children under 2 and wellchild examinations constituted only about 17 percent of those visits (18).

The surveys also include data on the presenting symptoms, the physician's

diagnosis, and the nature of the treatment received.

The NAIfICS has several limitations. First, the unit of measurement is

the patient visit rather than the patient and thus many of the same

problems occur as with other reports that use visits rather -2.han individuals

as the unit of measurement. Second, all the information collected is from

the provider perspective. No information is recorded from the client

perspective concerning now many other physicians have been seen for the

same problem, how long the patient had to wait for the service, how

satisfied he or she was with the encounter, or what it cost nor is any

followup made that would provide information on the outcomes. Finally,

the NAMCS provides no information on children and families with health

876 8 r''9
problems who do not seek care for those problems. The only way to get information on this population is through household survey methods. In addition, several surveys of hospitals and other institutions offer inpatient care including the Hospital Discharge Survey, which is a

continuing nationwide survey of short-stay hospitals in the United States. The National Institute of Mental Health conducts seven.'_ surveys of mental health facilities, including State, county and private mental hospitals, outpatient psychiatric services, and general hospital inpatient psychiatric units.

Patient Care Records

Another potential source of information about child health and health services is the patient care records of various clinics and other service providers. These records may be kept for internal administrative purposes or for reimbursement or for both as well as for accountability purposes as required by State or Federal regulations. They include information about the number of children seen, the type of service provided to each child, and the type of condition or health problem found in screening examinations along with some descriptive information about the child. Summaries of these records are seta to the relevant State agencies which in turn report them to the Federal Government. These recordkeeping systems have proven to be of little value. First of all, the summary records as a rule differentiate between visits rather than

children. Although standard Federal reporting forms have been devel- oped; some have arisen as to whether the information on these forms is really comparable from State to State because of varying characteristics of the programs and the recordkeeping systems in different clinics. Also, questions as to whether diagnostic labels and treatment

procedures mean the same thing in each clinic have been noted. Meaningful information has been derived from analysis of patient records within large individual clinics or prepaid health plans. However, the ability to generalize these studies is limited because the populations

served by these clinics are not representative of the entire child population in any given area. In summary, whereas these sources of information convey great deal about the condition of child health in the Untied States and the

characteristics of health care received by children, the overall picture they provide is by no means complete nor is it zs useful as it might be for

research, policy planning, or program evaluation. The major shortcoming of these data sources for developing a complete picture of child health is

that much of-the information is not child based. To illustrate, both the HIS and the NAMCS provide estimates of the average number of doctor visits made by children in a given year rather than the distribution of visits among individual children. Yet for program planning purposes, the distribution of health care use and the characteristics of high and low

users are as important as the average rate of use.

87 877
CURRENT NEEDS

The Need for More Basic Knowledge

To determine what health programs are needed, which treatments are

successful, and what care is appropriate for children, a need exists for

more basic knowledge. Examples of areas needing more research are: The impact of prenatal and postnatal conditions on infancy and

development The association between organic problems and poor learning or

achievement, and The health risks associated with particular poi: ulations and

environments.

Another challenge posed to the data collection and analysis process is

to determine the relative impact of various diseases and conditions on

different aspects of child health status. These aspects include mortality,

morbidity, discomfort, disability, and use of services. The problem is that

the impact of a specific type of disease is not uniform across all these

aspects. For example, allergies cause few deaths in childhood but take a

heavy toll in discomfort and need for medical services. Furthermore, the

distribution of impact varies from disease to disease. Therefore, calculating the total social and personal cost of any given disease is difficult. Such

calculations would be useful for planning the distribution of resources for

research and medical care. The current trend away from the traditional clinical and disease

orienttx,1 medical model to a holistic and preventive approach to medical

care requires data that will help guide these developments. Data are needed to persuade insurance companies, government, and labor officials

that disease prevention services, such as health counseling and education,

are cost effective in the long run. Data documenting the effectiveness of

alternate forms of treatment are also necessary as are data on the effects of

various forms of treatment that can help to improve the quality of care by

updating treatment procedures. The basic knowledge required by doctors

is also needed by policymakers and planners to decide how funds should

be allocated among services and subpopulations.

The Need for Health Information for

Particular Subgroups of the Population

State and local planners need data that describe the health characteristics of their populations and constituents because the present health care

delivery arrangement places the locus of responsibility for planning at the

State rather than Federal level. For this reason, acquiring State level data

for planning is important. A number of State planning officials have

suggested that the Federal Government provide leadership to help States

with their own data collection procedures Decisions regarding health care policy and procedures should be more

responsive to the views and evaluations of the public. Therefore, data are

needed on constituent perceptions of health care delivery systems. The

878
lack of information concerning client attitudes and perceived needs make

it difficult for planners to address constituent concerns. A need also exists for improved health data on children of different ethnic groups. The lack of such data precludes determining whether adequate programs exist to meet the. needs of these groups. Even where

ethnic breakdowns of data do exist (such as in mortality or prevalence of disaase statistics), the lack of other health related background information makes it difficult to understand why racial differences exist. Policymakers and planners also require information for a variety of other subgroups of children such as:

Chronically handicapped children Children with emotional and behavioral problems

Institutionalized children

Children in foster care

Specific age groups such as adolescents

Children of illegal aliens and Children of low financial sudsidy

In general, current methods of collecting and aggregating data make it difficult to pull out information for specific groups such as these. Information about children "at risk" makes it possible to direct services and programs toward the most needy. Defining those at risk is, however, a difficult task. For instance, 10-15 percent of all children reportedly have psychosocial problems and 10-15 percent overuse health services. Whether or not these figures represent the same 10-15 percent of children is not determinable at present (19). In addition, the concept of "high risk" may not be defined ai.equately enough to determine who are the children at risk. In an analysis of data collected in Britain's National Survey of Health and Development, researchers found that 60 percent of the population could be described as "at risk" in some way. Although these

results are based on a broad definition of risk, more restrictive criteria were found to be inadequate for predicting illness (20). Labeling individual children as "at risk" may be counterproductive if more attention is paid to the process of labeling than to understanding and treating the problem. Current definitions of handicap and risk are so

ambiguous that Wadsworth and Morris recommend that "at risk" groups be identified at the local level by those providing the care rather than by more structured information systems (2 CA.

The Need for Better Data on the Effectiveness of Child Health Programs

Information on the implementation, success, and quality of health

programs for children is useful to policymakers for guiding their decisions about program changes and additions. Child advocacy groups need such

information to monitor program compliance with legislated requirements. Current data are inadequate for the needs of both of these groups. To evaluate health programs, it may be necessary to utilize data from

sources other than the programs themselves. The best current example of

the kind of effort that is required is the Health Insurance Study being

879

7
conducted by the Rand Corporation (2I ). This is a social experiment being conducted in six sites across the United States to investigate the

effects of different health care financing arrangements. Health status is

assessed for each person on entering the experiment, annually during the

experiment, and on leaving after 3 or 5 years.

RECOMMENDATIONS

Changes in Existing Systems

The programs of the National Center for Health Statistics (NCHS) and

related Federal statistical activities collect a great deal of worthwhile

information concerning the health status of American children and the use

of health care services by children and their families. These data could be

made more useful if a few relatively simple changes were made in existing

procedures.

(1) Reporting of Child Health Data by Single Years'a Age

As noted above, the health of children and their use of medical services

changes with age. Much of this change is obscured when child health data

are tabulated and reported for broad age categories. In addition, age groupings are often different for different data sets. However, the development of a standard set of age categories is not one

recommendation. The varied missions of basic researchers and health

policy analysts are not compatible with a single uniform set of categories. Rather, wherever possible, child health data should be tabulated and

reported for single years of age. This would enable individual analysts to

regroup the data according to their own interests and needs.

(2) Development of Consistent Ethnic Categories

Implementation of a standard set of categories and coding procedures is

needed for identifying children and families of different ethnic groups.

Some progress has been made toward this goal because a number of large - scale health surveys are conducted by the Buy eau of the Census and

therefore make use of the Bureau's ethnic questions and coding proce- dures. However, other programs such as the Vital Statistics System and

the National Ambulatory Medical Care Survey are not as compatible as

they might be with the census procedures.

(3) Better Coordination Among Different Health Survey Programs on

Methods of Data Collection and Analysis

Considerable incompatibility occurs in the wording of survey questions and coding procedures among the different data collection programs

within the NCHS. In fact, many instances occur where for the same health

topic, the Health Interview Survey asks the question one way, the Health

and Nutrition Examination Survey another, and the Ambulatory and

880 r k.)
Medical Care Survey asks it still a third way. A synthesis of these data programs could be achieved by instituting compatible procedures wherev- er possible.

(4) More Funds for Analysis and Reporting of Maternal and Child Health Data

Much of the massive data collection described above suffers from

inadequate analysis and reporting. The staffs of NCHS and other health agencies are not large enough to do justice to these data given the

continual pressures for the generation of new information. Therefore, new funds should be allocated for the support of research, analysis, and

reporting by scholars and analysts in universities and private researct4 institutions throughout the country. These fundswhich would represent only a fraction of the funds required to generate the data in the first placecould be awarded on a competitive basis with the stipulation that the research would involve no new data collection but only further analysis and synthesis of existing data sets.

(5) More Multivariate Analysis in Federal Statistical Reports

NCHS reports rarely present a full multivariate analysis of child and

maternal health data. Therefore, to evaluate the relative importance of

different socioeconomic and demographic variables is impossible unless the user has access to the raw data tapes and performs his or her own

analysis. Multivariate analyses should be included as a routine feature of NCHS data reports.

(6) A Review of Recordkeeping and Reporting Requirements of Child Health Programs

Existing State and Federal recordkeeping and reporting requirements in

the maternal and child health areas should be reviewed and assessed and

only those routine forms of data be retained that have demonstrated their usefulness. Wherever possible, random sampling and auditing of existing

records should be substituted for the collection of new and comprehensive data for whole populations. This review would best be conducted at the

congressional level. If such a review is not conducted and data collection

systems are not modified, excessive reporting demands may jeopardize the delivery of health services to children and the conduct of meaningful research in child health.

(7) The Need for Data on Normal Growth and Development as well as on Disease and Illness

In the past, the National Center for Health Statistics has collected and

reported considerable information about the normal growth and develop- ment of American children. Analyses of physical growth patterns using data from the HES and HANES are an example. More recently, the mission of the NCHS has been interpreted more narrowly to focus on

881
measurements of disease and disability. Yet pediatrics practice and child

health research have been placing a greater emphasis on the development

of the whole child and on psychosocial disorders that do not fit easily into

the traditional framework of infectious disease and injury. Therefore, the

National Center for Health Statistics should continue to expand its data

collection and analysis concerning the physical, motor, intellectual, social,

and emotional development of normal children. This is particularly

important because the health status of young children is poorly defined by

existing methods of measuring disability in terms of the limitation or

restriction of "usual activity."

Development of New Information Systems

(1) Better Data on Handicapping Conditions in Childhood

Data from a number of child surveys demonstrate a serious lack of

agreement among parents, teachers, and physicians in the identification

and labeling of handicapped children. Basic research is required to

develop better definitions and the understanding of chronic and handicapping conditions among children, particularly of "new morbidity" conditions. Efforts should be made to develop and promulgate standard

diagnostic procedures that will allow for more objective information about

how many handicapped children actually exist and the kinds of assistance

they are receiving. Basic research on the causes and treatment of these

conditions is also needed.

(2) Federal Assistance for State and Local Information Systems

No easy or inexpensive solution is known concerning the need at State

and local levels for more efficient data collecting and compiling of

maternal and child health statistics. However, Federal agencies should

assist State and local agencies that wish to expand their data collection

through the provision of standard questionnaires and data collection

procedures. Funds should also be available to encourage experimentation

and innovation with new data collection procedures at the State and local

level.

(3) Child Health Identification Numbers and the Use of Electronic

Data Processing

Too many unresolved questions and issues still exist concerning the use

of health identification numbers and computer based health information

systems to make any sweeping recommendations in this area. A real

concern is that such systems will come into existence through the growth

of computerized records kept by insurance organizations without explicit

planning. Therefore, developments in this area should be carefully monitored so that potential advantages can be realized and possible

abuses or dangers avoided.

882
(4) The Need for a Longitudinal Research Program on Child Health and Development in the United States

Longitudinal research studies should most definitely be designed and

implemented in the near future using national samples of Arnerienn

children. The program could evolve naturally through several existing survey programs of the NCHS. Specifically, a Natality Follow-Back Survey is now in existence and periodically takes random samples of all births in the United States in a given year and gathers supplementary

information from the parents, attending physicians, and hospital records. This program should be continued on a regular basis. In addition, the children in the sample should be revisited in middle childhood and adolescence through the Health and Nutrition Examination Survey. This would link detailed and valid information concerning prenatal care, the

circumstances of birth and health problems in infancy to the later growth, and development and health status of the child. Furthermore, the use of examination procedures would allow for objective measurement of a

variety of health and developmental variables. The data collection should

include reports from parents and teachers to provide multiple perspectives on the child's social adjustment and functioning in home and school environments.

Several advantages would be gained by incorporating a continuing program of longitudinal research into the statistical -programs of the National Center for Health Statistics. First, it would be less expensive

than designing a massive longitudinal study from scratch. Second, it would help ensure that the resulting data would be made available to the

entire child health research community rather than being the property of a

limited number of investigators. Third, such a mechanism would provide

for the flexibility to focus on particular issues at different points in time. For example, one "wave" of the study could focus on environmental

determinants of child health; another could gather information on health habits and preventive measures; and a third could focus on the health status of particular subpopulations, such as the children of recent

immigrants to the United States. It would be especially useful to oversample children who participate in

federally funded health care programs to evaluate whether or not the

health history or current status of these children is notably better than that of children from the same social and economic groups who have not participated in these programs. Finally, by applying a standard set of

measures to successive cohorts of children it would be possible to get a comprehensive picture of how child health and health services are changing over time in the United States.

ACKNOWLEDGMENTS

The authors wish to thank the following people who were interviewed

concerning information needs for maternal and child health. Their

883
thoughtful suggestions and comments have been useful in developing

various sections of the paper.

Dr. T. Berry Brazelton, Children's Hospital, Boston, Massachusetts.

Johnathan Bromberg, National Public Health Program Reporting

System, ASTHO, Washington, D.C.

Dr. John P. Connelly, American Academy of Pediatrics, Chicago,

Illinois.

Dr. George C. Cunningham, Maternal and Child Health Branch,

Department of Health Services, State of California.

Dr. Margaret Grassi and Irene Clark, Bureau of Child Health, New

York, New York.

Dr. Anne James, Congressman Lee land's Office, Washington, D.C.

Ellen Jones and Dr. Paul Densen, Framingham Study on Children,

Schools and Health, Framingham, Massachusetts.

John Kearn, Staff Member of the Senate Finance Committee, Washington, D.C.

Mary Grace Kovar, National Center for Health Statistics, Bethesda,

Maryland.

Ruth Lubic, Maternity Center Association, New York, New York.

Frank Mays, Southwest Virginia Health Systems Agency, Virginia.

Evelyn Moore, National Black Child Development Institute, Washington, D.C.

Dr. Gabriel Nigrin, Pediatrics Department, St. Vincents Hospital, New

York, New York.

Sara Rosenbaum, Children's Defense Fund, Washington, D.C.

David Schaffer, Senator Ribicofrs Office, Washington, D.C.

Dr. Barbara Starfield, Professor of Pediatrics, Johns Hopkins Univeristy Baltimore, Maryland.

Jim Tallen, N.Y. State Assemblyman, New York.

Dr. Michael Wadsworth, National Survey of Health and Development,

University of Bristol, England.

Dr. Deborah Klein Walker, School of Public Health, Harvard

University, Boston, Massachusetts.

Dr. Kerr White, Deputy Director, Divsion of Health Sciences, The

Rockefeller Foundation, New York.

884
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Critical Evaluation." Archives of Disease in Childhood 53: 2,1978.

(21) Eisen, M., C. Donald, 3. Ware, and R. Brook. Conceptualization and Measurement of Health for

Children in the Health Insurance Study. Rand Corporation, R-2313-HEW, May 1980.

885

8 S1
SECTION VIII

SELECT PANEL FOR THE

PROMOTION OF CHILD

HEALTH WORKSHOP ON

ORGANIZATION OF

HEALTH SERVICES

FEBRUARY 21 -22, 1980
SUMMARY AND THEMES

by

VICKI WEISFELD, M.P.H.

INTRODUCTION

The following summary of the Select Panel for the Promotion of Child Health's Workshop on Organization of Health Services, held February

21-22, 1980, generally follows the meeting's agenda.t Thus the first major section is on organizational mechanisms, the second on sources of support, and the third on mechanisms to ensure funds are spent effectively. Statements from the opening presentation by Dr. Robert

Haggerty and the special presentation by Dr. C. Arden Miller have been

interwoven in the text, where appropriate. The fourth section of the paper, Workshop Themes, includes topics covered during the 2-day discussion that apply broadly, or for other reasons appear to deserve special attention.

ORGANIZATIONAL MECHANISMS

The following are summaries of the six organizational mechanisms for reaching a greater number of infants, children, and pregnant women with

needed health services that were presented and discussed at the workshop. The summaries are structured according to the following questions that were posed to the panelists in advance: Description Who is served Access

Effectiveness

What expansion-changes are needed in the program?

Implications of changes in the present program

Federal-State-local leverage points for change Comparisons with alternative investments Two additional categories also seemed useful as the summaries were prepared:Research and data requirements Workshop participants' assessments of this program

'The agmda and a lilt of participants are appendix A.

889
Not every person describing an organizAtional mechanism addressed all of the above issues. In some cases, supporting statements from back- ground papers provided to the workshop group are cited, but unless otherwise noted, descriptive statements about the programs discussed

came from presenters. Therefore, these descriptions are not necessarily

objective.

Publicly Financed Organized Care Settings

(B. Lelkowitz)

Description

In her discussion of Federal primary care programs for the underserved, Bonnie Leflcowitz primarily considered the kind of program offered in the Community Health Centers (CHCs) and "downstream" Migrant Health Centers; most Children and Youth (C&Y) projects; some Maternity and

Infant Care (M&I) projects; and some federally sponsored public health department clinics, hospital outpatient departments, and rural primary

care centers.2 These programs continue to expand, due to a sustained

Federal commitment.

The programs provide a required set of primary care services, often

provide "high priority" supplemental services, and usually provide social services, mental health services, and some support services; they employ

their physicians and nurse practitioners and can use midlevel practitioners effectively; sometimes they provide environmental interventions; and they have a commitment to community participation.

Who is Served?

Approximately 20 million people are in high-poverty, medically

underserved areas of the United States, and an additional 6-7 million are

in isolated rural areas that are not necessarily poor. About 30 percent of

the former group receive federally funded primary care,3 and 15-20

percent of the latter group's needs are met by various Federal programs. About half of those served are children. According to a table provided to

the workshop group, in 1974, neighborhood health centers were the source of care in 1.4 percent of health visits for children under 18 years of age;

2A variation on these programs was suggested in another participant's description of a Robert Wood

Johnson Foundation project being conducted under the Urban Health Initiative. The plan is to produce a

network of primary care centers in 12 urban areas, each to serve at least 15,000 people. The programs will

identify all the health resourcesFederal, State, and local government programs and private practitionersserving a defined population and try to catalyze a collaboration among them. The program will be

sponsored by large teaching hospitals or medical schools, with the foundation providing developmen' and

management support. The impact of this coordinated program will be assessed through comparisons with

areas where only Medicaid is available and with areas where both Medicaid and a freestanding center are

present. The study will also evaluate the feasibility of involving academic medical centers, looking for

differences such involvement makes in attracting physicians, services offered, utilization patterns,

community involvement, and so on.

3At another point in her presentation, Ms. Letkowitz indicated that 4.8 million people are served by

Federal primary care programs annually.

890
public health clinics and home careof which some portion was probably through federally sponsored programsprovided care in an additional 3.6 and 1.3 percent of visits, respectively.

Access

Everyone in the defined geographic area served by one of these programs is eligible for services without other tests. Programs use sliding fee scales and are nondiscriminatory. Federal law requires that centers provide personnel knowledgeable about the language and culture of those served. Transportation is provided, when necessary.

Effectiveness

Ms. Lefkowitz cited special population studies showing decreases in hospitalizations, infant mortality rates, and incidence of preventable disease (rheumatic fever) in service areas.

What Expansion-Changes are Needed in the Program?

The CHC program may be a viable funding mechanism for some additional kinds of organized settings, such as hospital outpatient departments. However, to expand the current C&Y and M&I programs would require complex changes in Title V; the merits of such changes are under discussion at the Federal level. Other changes are currently proposed so that some small, rural health centersunable to offer the broad range of mandated servicescould receive grants. In general, Ms. Lefkowitz supports increased funding for both new and existing centers. Another improvement in present programs may result from their

renewed emphasis on preventive and psychosocial services. This might be accomplished by setting aside monies at the regional level for such services and allocating them to individual programs based on proposals included with their budget requests. The development of psychosocial services also would be fostered by better linkages with mental health services and special purpose grant programs.

Implications of Changes in the Present Program

To meet the needs of half of the population in underserved areas and to

restore the preventive and psychosocial services by 1985 would require $2.3 billion$590 million of this would be grant costs, part of the total would come from the National Health Service Corps, and the bulk would be covered by reimbursement from Medicare and Medicaid and self-pay. This estimate is only $170 million more than the present CHC program

budget, but assumes increases in reimbursements and payments. On. the other hand, it also assumes reforms in Medicaid that would increase the

populatioi 'erved and services provided. (For a di.. -ussion on Federal-State-local leverage points for change, see Ms. Lefkowi, 's second presentation on network formation, summarized in a subsequent section.)

8 S 891
Research and Data Requirements

Ms. Lefkowitz's presentation pointed out a need for better information

in at least two areas in which studies are apparently underway, namely (1)

costs of CHC's compared to other providers (the Medicare comparisons

she cited have numerous methodological weaknesses) and, (2) the number

of people in underserved areas who receive acceptable services from other

providers.

Workshop Participants' Assessment of this Program

Some CHC-type programs, if sponsored by an agency of local

government, have been a springboard for a wide range of services; others,

if no additional local funds were forthcoming, have become "islands of

care." Other participants disagreed with the implication that local

government sponsorship has a uniformly positive result. Some preferred a

center with a strong consumer-community base apart from local health

agencies; in a later discussion, the likelihood that the neediest communities would pursue the formation of a CHC was doubted.

Some centers have been found to be collections of unrelated services

that do not promote true family care. Moreover, unstable funding has

made recruiting and retaining professional staff very difficult. The observation that the project grant approach produces results that

are not necessarily generalizable was apparently quite apt with regard to

the CHC model.

School Health Programs

(R. Walling and R. Hearn)

Description

School health programs vary tremendously in scope and quality. Four

promising programs described in the Robert Wood Johnson Foundation

Special Report were provided to the workshop; their details are not

repeated here. Robert Walling believes that schools in many areas are

becoming more involved in health because they are beginning to realize

the value of health as necessary in the development of the "whole child"

and not just as a factor of education.

Who is Served?

Not only do schools have the potential to reach virtually every child

starting at age 5, but Mr. Walling also noted that 39 States permit and 17

require that schools provide special education services for handicapped

children beginning at age 3.4

**The potential for the schools to serve the needs of handicapped children. under P.L. 94-142 is covered

briefly in a later section, -Children with Special Needs."

892
Implications of Changes in the Present Program

Workshop participants disagreed about the advisability of allocating a

certain percentage of school budgets for an expanded health effort, to be

administered by some (unspecified) agency. However, schools reportedly

are interested in increasing Medicaid reimbursements.

Federal-State Leverage Points for Change

Improved school health programs must be a joint responsibility of the

education and health care delivery systems. In the Cambridge project,5 for example, the director had roles in both the hospital providing services and health department (the latter having control over the school health

program). Some excellent cooperative arrangements between State health and education agencies were described, whereas another program, although physically located in a community school, was independent of the school board.

Research and Data Requirements

The Robert Wood Johnson Foundation has a national demonstration

and evaluation program underway to assess: (1) Whether basing nurse practitioners in school systems improves

access

(2) To what extent they could meet the medical needs clf children

(3) Whether they are effective in making referrals to other services and helping coordinate the range of services needed by children with complicated medical problems, and

(4) Whether stable funding can be worked out to perpetuate such programs, if they are found to be effectivefor example, reallocating existing school health :resources, reallocating all community categorical funds, or generating monies through

third-party payers Another Robert Wood Johnson Foundation research project enrolled pregnant women in a prenatal program conducted by the schools. The goal was to prevent subsequent handicaps and developmental deficiencies

in children of the enrolled mothers. The results of the program are not yet evaluated, but it is the first and most comprehensive effort by a school to

screen and support parents in the prenatal period.

Workshop Participants' Assessments of this Program

Although schools are ubiquitous and in some cases may be a viable setting for services, many schools may be unable to take on more

comprehensive health programs and Medicaid may be unable to pay for them.

. ID:scribed in the Robert Wood Johnson Foundation Special Report,

Johnson Foundation, Princeton, New Jersey. umber One-1979, Robert Wood

893

8 S 7
Despite some experiments, access to primary and prenatal careexcept

possibly for pregnant adolescentswould not be increased by expanding

school programs.

Prepaid Group Practices (M. Kagnoff and J. liolloman)

Description

No legislative reason is known as to why health maintenance organizations (HMO's)6 could not be more active in serving the poor with a

broader array of services. To exploit this potential, more is needed than

merely patching the present system. The original design of the HMO Act

of 1973 has produced HMO's that serve a rather smaR middle class

groupwhich generally already has access to serviceshas encouraged

the formation of for-profit HMO's to serve this same group and has

effectively limited the participation of Medicaid recipients.

Who is Served?

According to a DHEW memorandum provided to the workshop group

prior to of their meeting,7 less than 1 percent of all eligible Medicaid

beneficiaries are enrolled in HMO's.

Access

Under current law, HMO's cannot be established in areas where

perhaps half the Nation's population lives. Participants expressed some

concern that because of HMO's inherent cost-savings concerns, access to

some servicesparticularly "boundary" area servicesmight be limited.

What Expansion-Changes are Needed in the Program?

Frequently, no incentive exists for Medicaid recipielits, particularly

those in urban areas, to enroll in an HMO. They may lose coverage for

some servicesfor example, dental servicesand they may lose the

opportunity to choose their own physician, if they have such a choice.

Perhaps some aspects of the pediatric psychosocial clinic developed at

the Kaiser Health Plan in San Diego can be generalized to other kinds of

special health services and possibly provided by HMO's. Even though it

should be possible to recommend that these services be included in HMO

packages offered by Medicaid., promoting numerous special services

reduces HMO's incentivr: to enroll Medicaid recipients and reinforces the

idea that they need exceptional services. Moreover, almost no other HMO

has Kaiser's financial stability, which allows it to offer innovative services.

6The term HMO, as used herein, is confined to HMO's ofthe prepaid group practice type, and excludes

the individ practice association type.

7See appendix 8_

894
Federal-State-Local Leverage Points for Change

A number of changes in the HMO program were suggested or implied by the participants. Because the pub!ic policy trend apparently is toward loosening Federal guidelines on HMO's, indirect approaches may be necessary to achieve the desired ends. One problem potentially solvable at the State level is fluctuation in eligibility for Medicaid. Some people lose coverage this way and many of the "working poor" never have it. To have a significant impact on HMO's, redefinition of tho 11.:;:rn1 implications of Medicaid was deemed necessary, perhaps by federalization. To prompt different patterns of care, some funcitct....r.,-Ikte.J changes were suggested that would undoubtedly require amendme:ots to the current HMO law: this would give HMO's specific geographic areas tc., provide services to either change ownership and govert..;'....1..:e or give members a fma.ncial stake in the operation thereby increasing their concerns about efficiency. The Health Care Financing Administration is supporting an intiative to increase the number of qualified HMO's that contract with States to serve Medicaid beneficiaries and to increase the number of Medicare-Medicaid beneficiaries enrolling in HMO's. For the involved government agencies, barriers exist in developing contracting mechanisms, determining capitation rates, and ensuring quality of services. For the HMO providers, barriers are the high cost of marketing to Medicaid beneficiaries, which might be shared by Govern- ment, and additonal Government regulations.

Research and Data Requirements

More information is needed concerning ways to set appropriate

capitation rates for Medicaid recipients.

Workshop Participants' Assessments of this Program

A number of possible advantages of HMO's providing services for

pregnant women, infants, and children were suggested by the group. One was the possibility for offering special seiviceic, such as the pediatric psychosocial clinic, in the prkna--.-y care setting. Additionally, HMO's offer 24-hour coverage by pediatricians and child-trained mental health

professional's. The memorandum provided the group cites "conservative" estimates of a 15-percent savings in medical care delivery costs for each Medicaid

beneficiary transferring from fee-for-service to HMO provider, aside from

the benefits of receiving care from an organized systeta that guarantees access and has some quality assurance controls. Also, HMO's have at least a philosophical orientation toward preventive services. The distinction of HMO's to provide spccial supportive services for Medicaid recipients, to minimi7c costs, has been noted. Other beliefs expressed about HMO motivations were that HMO's do not want Medicaid patients because they have high visit rates, are generally

"sicker," and require more frequent hospitalizations, der Q

895
With regard to HMO's potential effectiveness in serving the "near

poor," or the "working poor," employers of low-paid, marginal workers

mal be likely to select the least expensive package of services available.

Differential payments or other incentives may be necessary to coax

HMO's to offer special services or to offer an upgraded basic package of

services that would be available to the working poor_

Public Health Departments

(C. A. Miller)

Description

Public health departments have expanded their services to meet the

needs of certain public programs, like EPSDT, and now most cities offer

pediatric primary care through their health departments. Legally, everyone in the United States is covered by public health

departments under State statutes. Some States abrogate this authority to

the local level; others use their local departments only as satellites; still

others divide their States into health districts_

Who is Served?

According to a table provided the workshop group, 3.6 percent of children under 18 years of age used public health clinics for an

ambulatory care visit in 1974. Public health department clinics provided

prenatal care for 12.8 percent of all live births in 1976 (and a much higher

percentage of births among poor women). Nationwide in 1976, they

provided one-fifth of new mothers with maternity nursing services. From

two-thirds to three-fourths of adolescent contraceptive users are served by

public health department family planning clinics.

Access

Although public health departments theoretically cover everyone, the

best departments are located where the full spectrum of health providers

are best. The opposite is also Prue. Without additional support, many State

and local public health departments have a limited capacity to provide

primary health care services. If they must provide incomplete services,

they nevertheless could link different .kinds of providers to such public

health programs as screening and outreach, thus becoming a "broker" of

health services.

Effectiveness

Some participants strongly believe that public health department

programs have proved themselves well able to provide women's and

children's health care effectively. However, only anecdotal evidence and

case studies support this view.

896 P
What Expmtsion-Changes are Needed in the Program?

Although more than half of local health departments are rendering

some personal health services, they need better facilities, staff, and

funding. These are significant constraints, made worse in some areas by

local physicians' opposition to program expansion.

Federal-State-Local Leverage Points for Change

National standards for health status and service utilization would foster

greater consistency among health department programs. A study of 15

outstanding local health departments found that they already believe they

receive more help from Federal than State sources. Pass-through Federal funding for local departments may therefore be a logical approach. Monies from Title V, or formula grants, go to local health departments, but might do so more efficiently and be more targeted toward child health

services if they were obtained directly.

Research and Data Requirements

Good data about public health department visitsother than the single

contact typeare not available. Cost comparisons with other providers of ambulatory services are uncertain. Studies are needed concerning the quality of care provided by public health departments, which might put to

rest the notion that they provide "poor programs for poor people" and

point out remediable deficiencies.

Workshop Participants' Assessments of this Program

Among the prime advantages of public health departments is their near ubiquity. In some places, they have a good record of providing well-child

and other primary and secondary prevention services. Public health department programs can and do use nurse practitioners and other midlevel practitioners as well. Moreover, to the extent that people trained

in these fields have developed concerns for the psychosocial aspects of health, the quality of the service they provide may be enhanced. In many localities, on the other hand, public health departments have been creatures of the political establishment and would require indepen- dence from loc.ul physicians and county medical societies. Some public health departments have a reputation for incompetence that may be difficult to overcomeaptly described as a modern manifestation of the old PrmaceaHygeia conflict.

Presumably, public health department programs would be subject to the

same criticism kweled at CHCsthat they can be collections of disparate, disjointed services; however, the material provided the workshop group

posited that "the concept of comprehensive care is much cherished but the evidence that it results in improved health status is equivocal at best."

891 897
Hospital Outpatient Departments OIL HeagartY)

'13,escrIption

For historical and social reasons, hospitals continue to be the "provider

of choice" for many people, especially the poor, although increased use of

the emergency room for ambulatory care cuts across social class lines.

People have been taught to view hospitals as the ultimate source of

medical care; in many cities no other options exist, particularly for

pediatric care; and, an abiding attachment is present to the hospital where

a child is born. Although not set up to provide ambulatory care, many large, distinguished metropolitan hospitals must ao so because they are located in the

midst of many poor people. Municipal public hospitals, in New York and

elsewhere, which have a special responsibility to care for these groups,

find themselves under increasing attack from the middle class over costs.

Who is Served?

In -large cities, pediatric outpatient departments are rather widely

avallable.8 Outside the cities, hospitals probably serve a consulting role for

area pediatricians. In a table provided the workshop group, 8.2 percent of ambulatory visits for children under 18 years of age were to hospital

outpatient clinics and 16.2 percent were to emergency rooms during 1974.

People seek ambulatory services from hospitals for many needs, namely

(1) well-baby care (from the site of the child's birth), (2) emergencies (both

true emergencies9 and .."outpatient visits7), and (3) followup in specialty

clinics for disorders prompting a previous hospitalization. The populations needing these services are not congruent with the population needing

primary care. The population served is further fragmented because voluntary hospitals "skim" the Medicaid eligibles from their surrounding communities,

leaving the public hospitals with the medically indigent and illegal aliens

for whom reimbursement for services is impossible.

Effectiveness

Health clinic data cited showed a decline in unscheduled emergency

room visits when people were given continuity of care. This occurs also when the care is given in a hospital outpatient service, particularly if

physicians are available by telephone.

5One workshop participant, in visiting 15-20 hospitals in the urban-suburban San Francisco Bay Area,

found that all had outpatient services and provided emergency care, but few had pediatric outpatient

departments.

9Services to meet true pediatric emergencies are discussed briefly in the subsequent section, "Children

with Special Needs."

898
What Expansion-Changes are Needed in the Prog Tam?

To encourage outpatient services, changes are needed in the financial

incentives of hospitals that would increase the importance of outpatient care relative' to inpatient care, remove the barr:.rrs to outpatient primary

care for the medically indigent, and stabilize funding for outpatient services so that they can attract physicians. These changes would reinforce the small trend toward establishing primary care group practices in

hospitals and would raise their currently low status. Greater efforts are needed to break the social isolation of people in

hospitals' service areas. Better relationships with free-standing child and community health centers in the area would help and would enable referrals to more appropriate units of care. One model would be to have

the hospital responsible for developing linkages, with the client free to

choose among available providers. The system must be kept flexible to meet certain patients (who will not make or keep appointments, for example) on their own terms. Yet the needs of such patients must not dominate planning. Relationships also should be established with schools and day care centers. Perhaps as a first step, however, better interfaces should be established between emergency rooms and hospital outpatient departments.

Implications of Changes in the Present Program

Hospital outpatient departments particularly need casefmders and

outreach personnel rather than social worker. These workers need not be professionals, particularly if they can be supervised by a public health

nurse.

Federal-State-Local Leverage Points for Change

Dr. Heagarty was uncertain whether the Federal Government's new

outpatient department reform legislation will do any good, but she said it recognizes the need for capital funds. Categorical funding programs cause

the hospital outpatient departments that rely on them to shift and contort

their program emphasis, lose continuity of services, and spend inordinate

staff time and energy meeting changing requirements. Instead, what is needed is support for the basic systems, and opening up financial access, and in the long run, decentralization of primary care to the neighborhood level.

Workshop Participants' Assessments of this Program

The advantages of the population's acceptance of this service site which in some communities extends their acceptance of community health

centersmay be unrelated to the quality of care delivered. Quality of care

in a hospital outpatient department may suffer, because of the litany of problems recited by the workshop groupanonymity, fragmentation, crisis orientation, episoeic care, high cost, and general inappropriateness

for delivering primary care services. Although personnel in emergency

X93 899
rooms are increasingly trained to provide family care, pediatricians are

rarely present and the overall quality of pediatric care is probably

unnecessarily poor. The advantages of scale presented by the hospital setting are not

necessarily realized. Described pejoratively as bureaucratic, nevertheless

hospitalsand especially ambulatory servicesare often not well organized and managed. Emergency room care costs more than that provided in family health

care programs because of greater use of laboratory and X-ray services.

Prospective budgeting could control any overuse of ancillary services.

Hospitals also may use outpatient departments to generate business for

unfilled beds, a temptation that could be removed by decreasing financial

incentives for inpatient care.

Home Visiting

(S. Stoiber)

Description

Preliminary plans were described for a Federal program to provide a

home visiting service employing either nurses or lay visitors.10 This

program would be one part of the Surgeon General's larger objectives of

improving the efficiency of current programs directed at pregnant women

and high-risk children, encouraging better integration of local service

systems for identifying high-risk pregnant women and infants and

bringing them into continuing care, and where such systems do not exist,

encouraging their establishment. If a home visiting service were judged

suitable for helping achieve these goals, its roles would be to:

Identify pregnant women and infants at high risk Assess whether they have a stable source of care or whether they

need to be put in touch with community resources Assess whether the home environment has enough basic resources

to care for the infant and link the parents to community resources

if necessary, and Where community services are not available, especially in rural

areas, encourage health departments to provide them

Who Would be Served?

The recipients of this program are not yet determined. Eventually, it

might be an entitlement program, available to every woman and infant,

but probably initially would be restricted to high-risk women, i.e., women

in families whose income is less than 150 percent of the poverty level.

I°A nurse visiting project in Elmira, New York, was described, which b s enrolled pregnant volunteers

who met certain criteria used to assess high risk. In their visits, the nurses (not necessarily registered nurses

or nurse practitioners) follow a carefully designed protocol. Women with more complex needs receive

more intensive services over a longer period. Feedback about the visits is given to the woman's physician

or public health clinic provider. Although the program is largely educational with emphasis on nutrition

and use of alcohol and cigarettes during pregnancy, screening and transportation are provided when

needed. Thorough evaluation of the program has been made mandatory, but results are not yct available.

900
Access

Past programs of this type were staffed by public health nurses, whose visible presence in the community promoted case finding through

informal referrals.'

Effectiveness

The workshop group highly agreed that the public health nurse home

visitor programs in the past have been very successful. One demonstration was cited in which nursing visits began with a hospital visit to every mother and infant after delivery and continued in the home after discharge and in which health indicators and infant mortality rates both

improved "dramatically." To increase the likelihood of effectiveness, advances in understanding

about the importance of attachment in the newborn period and other developmental issues should be incorporated in program planning.

Implications of the Program

The Surgeon General's office has begun to assess the funding and manpower resources needed for the home visiting program, to examine possible civil liberties and privacy concerns, and to determine ways to

connect this service with sources of continuing family care. If only those at the highest risk for low birth weight (234,884 such

infants were born in 1977) and congenital abnormalities (50,000 in 1977) were provided with five to seven visits, the program would require 300

public health nurses and cost $10-15 million. If the program tried to reach

the Nation's 1.2 million low-income pregnant womenthe majority of whom are Medicaid ineligiblewith an average of five visits, the program

would cost $200-300 million (figures are in 1980 dollars i2). No funds are

included for followup care. Although at least one workshop participant believed the trained manpower for such a program already exists among public health nurses, this might not be true nationally and disagreement has erupted concerning

the level of training that the home visitors would need. The Elmira

experience supports the view that the actual home visitors, who must be able to identify a high-risk mother and assess the home, do not need a high level of training. To supervise the program or to intervene requires more training. In all the models that the department has examined, none systematically identify high-risk pregnant women and notify a nursing service to

contact them. In the past, visits by nurses apparently did not rouse

concerns about privacy, but people's concepts of privacy may have changed greatly in recent years, and racial and cultural differences

I IThe Elmira, New York, project informed all providers in the communityincluding pediatricians and obstetriciansabout its services.

1The scale of the progresn envisioned by the department was unclear at the workshop. Ms. Stoiber says

that in departmental planning, high-risk is being called low income, but her estimates of costs separate

them.

8 5 901
between public health personnel and the recipients of the service could

exacerbate any such concerns. Privacy may be a particular problem in

adolescent pregnancies, if health programs are linked to the schools.

Federal - State -Focal Leverage Points

One goal of the program is to integrate existing local services. A likely

setting for the program is local health departments, but other institutional

homes could be found for these services in some locales where that was

more appropriate. In general, the organizational arrangementsboth with

local agencies and other Federal funded programsand oversight provisions have not been developed yet. To test various ways of linking

these services, the program may be done first in demonstration.

Comparisons with Alternative Investments

If the more expensive program is selected, its advantages must be

weighed against those of a comprehensive care system.

SOURCES OF SUPPORT FOR IMPROVED

ORGANIZATIONAL MECHANISMS

Health Services Districts

(A. Nichols)

The health service district as a means of funding, organizing, and delivering health care in underserved areas was described by Andrew

Nichols. Health service districts Would embody-some of the organizational

characteristics of local school and special districts13. They would have the

authority to issue bonds and raise taxes to provide medical services. Thus,

local residents would pay at least part of the program's costs. State

government would be expected to provide a significant portion of funding,

with recourse to Federal support through such programs as Medicare and

Medicaid and through special purpose grants and manpower programs,

such as the National Health Service Corps. This combination of local,

State, and Federal funding would be accomplished without an increase in

Federal bureaucracy. Districts would have to meet the requirements and

restrictions imposed by the Federal programs. Arizona law provides for local initiation of a request for establishing a

health service district and local elections for district board members. The

board would determine the services to be provided and their modes of

delivery and be responsible for the district's management. Accountability

would be direct because board members not responsive to local needs and

demands could be recalled or not reelected. Services could be provided by

staff hired by the health service district, through contracts with nearby organizationsHMO's, for exampleor through relationships with exist13Arizona is the only State with enabling legislation for health service districts, but it has not yet

established any.

902
ing public health agencies. (Dr. Nichols believes local health departments, because of their negative image, cannot organize health service districts

themselves.)

The health service district concept has won the support of the American Public Health Association and Rural America. It embodies the principle of oranni7 ntion favored by the Commission on the Costs of Medical Care

that the primary responsibility for providing health service should be

local, but if local moneys are inadequate, the responsibility should move

to the next higher level of governmentand never higher than necessary. Dr. Nichols believes that health service district proposals have the potential for both liberal and conservative support. Potential disadvantages of the health service district model identified by the workshop

participants were: (1) The tax base in areas of the greatest need is inadequate. (Dr. Nichols said this problem could be overcome by dedicated leadership"evangelism"and technical assistance.) Local

bond issues to support the program probably have slim hope of passage, given that more traditional and more widely acceptable

school bond proposals are frequently rejected. In fact, the "tax

revolt" generally appears to make the proposal's timing inauspi- cious.

(2) Inequities may arise because multiple districts encourage multi- ple standards, as has occurred in welfare programs. (3) Coordination with other State and Federal public health pro- grams will be difficult to achieve. (4) Asking service recipients to monitor the program and the

performance of board members is untenable. (5) The program is likely to rouse opposition from providers and

insurers, who are strongest at the local level. To forestall this conflict, perhaps an accountable district structure could assume

a governing role, shy of directly providing most services. If some

service gaps remainedwhich might well occur among services

the Panel is most concerned withthe district could supply

these. However, because districts would be established in medically underserved areas, opposition from organized provid- ers might be minimal. Public-private sources, of care could

operate in parallel, as do public and private school systems.

Private. InsurancePublic Insurance

Federal Grants

(S. Jones and R. Blendon)

Stan Jones and Robert Blendon discussed the relative merits of

attempts to improve private insurance, public insurance, and Federal grants to increase services for maternal and child health. Both speakers agreed that major changes in the present health care system appear unlikely in the near future and that improvements through "adjusting the

interfaces" among current programs or "incremental shifts in the

cr3

903

T7
responsibilities of local units of government" are the most that can be

expected. Mr. Jones proposes substantial modification to the present public and

private insurance system, aimed at achieving comprehensive benefits, universal access, and appropriate use of health services for pregnant

women and children. He presented the following rationales for exploiting

the private insurance system: (1) More than half of the money for personal health care services

comes from private sources. Changes in this sector would

therefore have a large impact. (2) To the extent that mothers and children are covered better with

private funds, the burden on publicly funded programs is

decreased. (For example, gaps in coverage that occur at the end

of employment could be filled.) (3) Like the public insurance system, the private insurance system is

rapidly increasing in costs, which is attracting political lightning,

perhaps increasing the acceptability of proposals for change.

(4) Improvements in the third-party payment system (both public and private) are more acceptable to insurers and private physicians than services directly provided or subsidized by the

Federal Government.

(5) Public policy experience with the strengths and weaknesses of

the insurance mechanism makes it easier to amend in the desired

direction. In fact some good State models show that such

changes in the private insurance system can be achieved and,

moreover, that insurersnotably Blue Cross and Blue Shield

may be increasingly responsive to Federal initiatives, thereby

escaping haphazard and inconsistent State regulations. (However, Mr. Jones doubts that the Panel's recommendations will

receive support from either the insurance industry or providers;

the private sector will not negotiate until a specific proposal is

under serious consideration.) (6) Private insurance should not be equated with fee-for-service

care. The insurance system can be structured to favor capitation

or other organization schemes deemed desirable.

Numerous disadvantages of the insurance systemsome of which

might be remediable, as describedwere noted by Mr. Jones, Mr.

Blendon, and the workshop participants. One of the most pronounced of

these is that insurance, in general, cannot be targeted. (The "maternity

option" offered by some plans is an exception.) A small number of people

require the greatest number ofservices, and insurance cannot adequately

cover high-risk groups. Insurance theoretically spreads the cost of services

for high-risk individuals over a broad population; however, in practice,

increasing insurance benefits may only stimulate demand among healthy

people for those kinds of services that insurance is effective in paying for

(minor office care by pediatricians) and special support services that are

not in great demand may remain uncovered. This problem might be

overcome, for example, through regulations requiring ccwerage of certain

services. Insurance companies could be directed to subsidize these

expanded programs from other income sources or through a surcharge on

904 898
group and individual premiums. Because some people cannot afford

present insurance premiums, a surcharge also could make insurance more

affordable. Private insurers presently have no obligation to see that people

actually receive the covered services. Broad-based insurance is only marginally effective in reducing infant mortality. Moreover, insurance does not reduce social class differentials in

infant mortality rates and, in fact, may increase them. (Although Medicaid coverage has resulted in increased physician visits for lowincome beneficiaries, the rate of visits for children covered by the program

has not increased.) Expanded maternal and child health insurance programs might be marketed in unfair or misleading ways, as supplemental insurance for the elderly has been. Similar to the solution proposed for the elderly's

insurance programs, maternal and child health insurance plans could be

subject to Federal standards that would ensure at least basic coverage. Presently, some States have such standards even for Blue CrossBlue Shield plans. Lastly, ensuring the quality of the covered services that are provided by private sources is problematic. Aspectt of care related to quality that insurance could .promote are access, continuity of care, and more

appropriate organization of services. In Mr. Blendon's assessment, the possibility of expanding private (or even public) insurance coverage to a broader population or to a broader group of services is unlikely, considering the overwhelming opposite trend. State officials concerned with rising health care costs are reducing services

for the poor or tightening Medicaid eligibility. For example, the California State Health Departmentfaced with a possible 30-percent budget cut _had- the -new--tax reduction referendum been passedis looking to first decrease the MediCal budget, its largest program. Even unions are

agreeing to drop services from the health benefits packages of their contracts. Insurance companies are most likely to delete "boundary"

s_ enrices first, ambulatory care services next, and hospital services last. The alternative to insurance that Mr. Blendon proposes is the Federal grant mechanism, partly because he believes that the constituency around

children has to support specific servicesfor example, high-risk units, outreach, and screening programs. An advantage to the project grant mechanism is that it allows experimentation and combinations of approaches, including one-on-one

interdisciplinary services and even environmental interventions. On the other hand, locales without resources may not take the initiative to seek

project funding, resulting in unequal access to services. To some extent, this problem could be addressed through technical assistance. Targeted children's services were supported by some participants because even if services were universally available, children's services might have to be provided separately. Child health services may need to maintain their identityparticularly in the view of staff. Identifying pregnant women and infants at high risk is difficult. Highrisk registries have not proved to be reliably predictive either overseas or

in the United States. However, if every community had an established, permanent program for serving high-risk mothers and children, they could

905
move under and out from its umbrella as necessary. This kind of stability

is often lacking in grant programs. Several examples of the experiences of other countries were provided by

the group. In Sweden, which has one of the world's lowest infant mortality

rates, a network of prenatal care services reaches nearly everyone. Specialized services are available for high-risk women. The lesson is that

the universal service is prerequisite to effective targeted services. In some European countries, high risk is determined by the vulnerability of the

family and not by disease indicators; similar efforts to take psychosocial factors into consideration are needed here. To some extent, the experi- ences of European countries are inapplicable to the United States because

of their generally homogeneous populations and high tax rates for

supporting health services; however, with some adaptation, their underlying principles may nevertheless be relevant. In summary, the key to obtaining the kinds of services and organization

that the Panel is likely to want to recommend, Mr. Jones suggested, is

some sort of unification or integration of financing. Tapping into the private insurance dollar to obtain more maternal and child health services

(as opposed to expanding Medicaid) would not jeopardize Federal funding for project grants. If grant programs were to replace insurance support for institutions offering special servicesespecially for hospitals, whose ability to provide

such services is becoming increasingly constrained the pressure to cut back on services that is now coming from insurers might well be replaced

by similar pressure from politicians. Future consideration concerns the recommendation for a mandated

standard set of insurance benefits that would make it politically

impossible to also obtain better grant programs targeted toward high-risk populations. The political feasibility of achieving change might be

improved by suggesting strategies that do not call for all new moneyas emphasized in the discussion of the proposed home visiting program. Current services budgets could be reprogrammed and used more effectively without new entitlements and funding sources.

Statewide Systems of Community Child Health Centers

(J. MacQueen)

The goal of Iowa's statewide network of child health centers is to

provide health and health-related services to children whose needs are not

currently addressed in traditional treatment settings. Iowa developed this

system under a 3-year special grant from the Maternal and Child Health

Service and the Bureau of Education for the Handicapped. Grantees

under this program were to develop programs demonstrating cooperation

between State education and health agencies. In planning the child health

centers, now operating in each of the State's 14 planning regions, a deliberate attempt was made to ensure that they are not closely identified

with any strong community education or health program.

906
Each center is staffed by a specially trained pediatric nurse practitioner. Physicians who work in the centers receive special training in developmental pediatrics. The remainder of the centers' professional staff is comprised of people employed in child-caking agencies in the community, thus avoiding duplication of personnel and services; this allows the center to

serve as a meeting place for representatives of various agencies thereby

fostering interagency cooperation. The services of the child health centers are available to all children. The

community board selects the services to be offered from a list provided by the State agency. Many categories of necessary services cannot be provided effectively in private physicians' offices or through traditional modes of service organization. Examples of the programs provided are: (1) Integrated evaluation and planning clinics. Children are referred

by schools, other agencies, or private physicians. Parents also may self-refer. The clinics provide diagnostic, evaluation, and planning services, the latter involving not only the planning

clinic staff who are involved with the evaluation, but also the

schoolteachers and others involved in the child's care. These

planning sessions are stressful, but the outcome is positivethe creation of a community plan of services and a community

support team for the child. Such a system is necessary because

letters of diagnosis sent to schools are notoriously inadequate in prompting appropriate action. Uncorrected diagnostic errors

and "let's wait and see" approaches can be devastating. (2) Planning child health services. Using an Iowa study of regional demographic, social status, and child health care system data, the child health center boards are encouraged to identify unmet needs in their areas. Although many of them are proceeding

cautiously with this new responsibility, one of the program's basic purposes is to increase community involvement in program

development. (3) High-risk infant followup program. (4) Other. Services conducted that include pediatric coronary heart disease prevention programs, obesity clinics, genetic counseling

clinics, and information referral services. Dr. Mac Queen concludes that this program is an Iowa solution (the

success of the approach may be a result of the stability of Iowa's other social, political, and economic institutions, notably its schools), but its principles may be applicable in other States. The project approacheven in a statewide programpermits "bound- ary" services to be offered. Because of inadequate methods of evaluation, providing such services on a piecemeal fee-for-service basis is highly

inadvisable. Another advantage of this program is that it provides agencies faced with diagnostic problemsschools, juvenile courts, adoption age -.cies, even private physiciansa place to turn. Other primary

service providers could possibly plug into this system to achieve an

integration of services in boundary areas. Finally, the system offers the opportunity for continuing education of community leaders and health service providers about local child health

needs and the value of coordinated services.

907

9u1.
ENSURING EFFECTIVE USE OF FEDERAL

CHILD HEALTH FUNDS14

The California Situation

(B.. Myers)

California's long history of leadership in providing a broad range of maternal and child health services is threatened seriously by recent tax

cuts that would cut State income tax revenues in half." Although the full

impact of Propositions 13 and 4 has not yet been felt by the State (because of previous budget surpluses), the effects of the new proposal would be

much greater and appear rather quickly. In preparation for its possible

enactment, all State departments are working toward cutting their budgets by 30 percentfor the State health department, this cut would be $1.5

billion. The health department is concentrating its efforts on reductions in

the Medi Cal program, which comprises $4.0 billion of the department's $4.8 billion budget. Not only is Medi Cal the department's largest

program, which makes cuts there inevitable, but by so doing, Ms. Myers hopes to save programs that either have the greatest impact on health

status or meet targeted needs. For example, some State programs cover

many people for whom Federal moneys arc not available. As other means of saving these programs, the department is trying to

persuade private insurers to pick up some services and is attempting to

increase the effectiveness of current programs by omitting overlaps that would garner extra moneys to fill some coverage gaps. To support this

effort, she is hoping for Federal Government flexibility, even if more

funds are not provided, and plans to build on the traditional strength of

California's county hesIth-departments. The streamlining of State child health services is taking place with the

guidance of reviews conducted by both an external Child Health Board

and an internal group. In these consolidation efforts, the concept of

pooling _child health funds may be attempted. Both private and public providers would be included in the program with the accountability

structure residing in a State office ofmaternal and child health. Ms. Myers believes that the State health department is a necessary intermediary

between Federal programs and local services and is concerned about

Federal preemption of State laws. Much of the workshop discussion centered on the question of State

accountability. Ms. Myers' view is that structures to ensure accountability, including fiscal responsibility, must exist at each level of government. Federal programs could set minimum standards, which States could

exceed through service models of their own choosing. If a State does not do its part as a guarantor of services or in ensuring that a certain

population receives care, State revenue-sharing moneys could revert to the

14These presentations are not summarized in the order listed on the agenda because the third

presentation, by Ms. Lefkowitz, summarized some of the problems described by Ms. Myers and Dr. Silver.

15 his proposal was defeated in a State referendum, but its effects on State health officials' planning are

instructive.

908 9 L) 9
Federal Government, which then would have the responsibility to provide

the services. A better way to pursue accountability may be through

negotiated contracts rather than through regulation, although workshop

participants noted that the Federal Government in the past has not been

an effective negotiator. Two additional suggestions were considered useful, namely (1) that States designate agencies to keep track of child health status and health

services, irrespective of provider (California's health statistics department is currently developing a child health information system), and (2) that one -half of State matching funds for the program be in "hard cash"

rather than in-kind services.

Statewide Demonstrations Using Pooled Federal Child Health Funds

(G. Silver)

As a long-term goal, Dr. Silver proposes a major effort to strengthen

families along several dimensions, as described in the Carnegie Council on

Children report, All Our Children. More immediately, he proposes the

establishment of a comprehensive preventive serviceincluding psycho- social servicestargeted for children that would be organized at the State

level and funded partly by Federal moneys; the program would involve home and school but would remain separate from the medical sector and would be staffed, operated, and administered by specially trained nurse practitioners. Pregnancy and childbirth would be accommodated within

the preventive program, using nurse midwives, except when high-risk or medical -conditions necessitated involvement of the medical care system. Dr. Silver suggests that several statewide demonstrations of such a service be implemented. This could be accomplished by redirecting current maternal and child health program funds (through waivers) and would not require new legislation. Such a new structure is needed, he believes, because adding more money to current programs is unlikely to produce

improvements in child health. Again, the principal demurrals by the workshop group related to State accountability. Permitting States to decide which services to provide---- especially through allowing waiverswas troublesome to those partici- pants whose past experiences with States have produced distrust. However, many participants appeared to believe that certain States should

be capable of providing useful demonstrations. Dr. Silver agreed that Federal standards are needed; if these were met, States might obtain funding relatively unfettered. Certain universal standards could be, for example, nondiscrimination, a commitment to

serve the poor and measured outcomes. These standards would be much

less restrictive than meeting the requirements of the present multiple Federal maternal and child health programs. Dr. Silver noted that the Federal Government does very little monitoring and evaluation even when it is mandated.

Whether it would be possible or desirable to separate preventive, curative, and health promotion services, or to separate biomedical and

909
psychosocial factors, or to separate the roles of nurses and physicians as neatly as Dr. Silver implies was questioned. Alternatively, the best aspects of multidisciplinary settings could be strengthened.

A Proposed Federal Initiative

(B. Lefkowitz)

Beginning in the fall of 1980, the Federal Government hopes to start resolving some of the problems previously discussed by selectively

expanding State and local government involvement in planning, coordi- nating, managing, and delivering preventive and primary health services

to underserved populations. The fiscal year 1981 budget request includes $5 million to be awarded to selected State and local government agencies

for the planning and coordinating function. This program is part of the

department's effort to fix two kinds of programs: (1) Title V, State formula grants, which have lacked a mission; the

guarantor-of-services role of Title V agencies would be strength- ened, so that they will do more than identify service gaps; the Federal Government will provide more guidance, although not necessarily increased management or control (2) Project grants, whose advantages are targeting, community

participation, and the ability to circumvent recalcitrant State and

local governments The new program planned for FY 1981 would encourage consolidation of project grants by the State or local government agencies selected for

awards. State and local governments have some advantages over individual project granteessuch as statutory powers to fill in service gaps, an overview of community problems, and the ability to create service

networks. Ideally, the Federal Government hopes to balance the advantages of giving authority to State or local agencies with those of supporting project grantees. (This program could mesh with the plan to strengthen

Title V, but they are separate efforts.) Some successful, innovative models have arisen at both the State and

local government levels, on which the new program plans to build. The

State or local government role could range from that of a coordinator, to a

funding conduit, to a monitor and manager, to a service provider. Units of

State and local government that apply for funds would be free to develop

their own plans for coordinating Federal, State, and local public and

private health resources. The demonstration program would use relaxed

application and reporting procedures and increase their conformity, but

will not require legislative change. In return for this flexibility, services to be offered under the new

program must meet Federal standards. They must be accessiblephysi- cally, geographically, and financiallyprovide continuity of care, be

oriented toward the family and social setting, be coordinated with related

servicesmental health, food assistance, and day care, for examplebe

managed efficiently, and be of high quality. Successful applicants will be those State and local government agencies

whose plans are judged to demonstrate willingness and capability to

910 9 ij
participate in the experiment and to meet certain goals. The Department of Health and Human Services would negotiate a performance agreement with them, which could be a device to ensure that efforts are made to promote child health. For example, the agreement could place heavy

emphasis on providing maternal and child health services, or the target populations specified could include pregnant women, infants, and

children. Furthermore, the performance measures set could reflect this emphasisfor example, reaching a higher proportion of women with

prenatal services in the first trimester of pregnancy. Plans would have to specify linkages among services and provide for monitoring the efficiency, cost effectiveness, an quality of services. They would have to predict costs and estimate benefits of the new coordinated plan versus continuation of present project-by-project support. Finally, they would have to incorporate substantive consumer inputespecially when community health centers that had enjoyed a high degree of consumer participation were to be included. The new Federal program would encourage pluralism in service

arrangements, recognizing different capabilities among State and local governments. In contract to statewide plans,. it allows the Federal

Government the flexibility to reach a good local health agency directly if

the State agency is ineffective. Despite the gloomy appraisal that States now have a stake in doing worse by poor people, Ms. Lefkowitz said this proposal has raised

considerable interest among some State and local governments. The propoF -1 was viewed by workshop participants as perpetuating State health aepartments' languishing condition by allowing them to

continue to be bypassed. Simultaneously, the capacity of sonic local government agencies to provide health services also may be weakening. The result of the program therefore may be to reinforce only the strong State and local agencies and provide nothing for the flagging ones.

WORKSHOP THEMES

During the discussions of the specific proposals for organizing, funding, and ensuring the effectiveness of maternal and child health services, a number of issues emerged that have relevance beyond the specific context in which they were raised or that seem to deserve independent considerion. To some extent they have been touched on in the previous text, but

they will receive a somewhat fuller examination here. Topics selected for separate consideration are: Children with special needs The role of parents The role of consumers

The role of the private sector Characteristics of programs Manpower and training

Incentives

Organizational matters Advantages and disadvantages of project grant funding

911
Long -term versus short-term goals Federal-State-local government Research requirements

Children with Special Needs

In addition to the usual groups of children receiving public health

programs, a number of other groups were considered in special need of

attention:

(1) Children needing continuing care. Ensuring ongoing services for

children who have chronic conditions or severe developmental disabilities can become a problem when programs are targeted at infants and early childhood. Primary care systems must improve

their capacity to link such children with effective secondary and

tertiary care providers. A Robert Wood Johnson Foundation

study is assessing whether nurse practitioners working in schools can coordinate effectively the range of services needed by

children with complicated medical problems. (2) Handicapped children. Neither schools nor primary care projects can meet the complex needs of handicapped children. The program described by Dr. Mac Queen would appear to be a

salutary melding of health and education department responsi- bilities, yet few school based programs have attempted to

prevent handicaps and developmental deficits by enrolling

pregnant women in a program of screening and support. (3) Children with true medical emergencies. Most emergency room

personnel are not trained to cope with pediatric emergencies, resulting in unnecessary morbidity, some permanent disability, and occasional deaths. Pediatric psychosocial services usually

are not available in emergency rooms. The problem reflects in part a "temporal" barrier to care that affects all social classes.

(4) Children with geographic barriers to care. Many children with

varying problems that have important psychosocial dimen- sionshandicapped or obese children, for exampleare very

poorly served. (5) Children of the medically indigent. Increasingly, public health departments and metropolitan hospitals are providing health

services to people who are not covered by Federfa programs and

who cannot themselves pay. Institutions providing their care face

serious financial difficulties. Many of these people are illegal

aliens. Changes in current laws are needed to extend Medicaid

coverage and other health benefits to those families and possibly

even to allow HMO's to serve them. Contrary to popular belief, the poor today are not a stable and unchanging group of

families. People near the poverty lineincluding the so-called

near poor or working poorhave rapidly shifting eligibility for

programs, which makes continuity of care virtually impossible. Changes in the law that would stabilize eligibility are needed, as

are revised health insurance practices that would extend cover912 9 C
age without further premium payment for 3-6 months after

termination of employment, divorce or separation, or death, or until a new policy took effect.

The Role of Parents

During the workshop, numerous rationales for seeking close cooperation between parents and the health care system serving their children were expressed: In Europe, to achieve local control of programs, parents are

involved financially as well as administratively in their planning

and operation. Many boundary-area servicesparticularly psychosocial ser- vicesare closely related to home, family, and school environ- ments.

Parents may need special educational efforts about the importance of bonding during the newborn period and parent-child

relationships in development. Parents must not dominate the system, however, and programs should be

centered around the needs of children.

Parental cooperation may not be achieved readily. Schools have been

given an impetus to expand their health programs partly because working parents are not available to accompany their children to other caregivers. These programs run the risk of excluding parents from important decisions about their children's health or medical treatment. Some

programs do not delay necessary treatment when parents are unavailable; however, this policy was controversialsome workshop participants would not substitute any "system" for the parents.

The Rolle of Consumers

Because of increased insurance coverage and the shifting composition of people in poverty, the number of people who see themselves as the

continuing responsibility of public authorities has declined. Thus, fewer people are directly concerned with maintain' ing the permanence of public

institutions. This may partly explain why recipients of public health and welfare programs, for example in California, are not actively opposing tax

and services reduction proposals. Another possible explanation is that State programs are not close enough to the people they serve to engender

loyalty or commitment. Consumers must be involved in the planning and administration of services. During the past decade, a corps of sophisticated consumer activistsincluding many with substantial political clouthas developed

in some parts of the country. Such consumers have proved themselves capable of assuming significant roles, as in the community boards of the

Iowa child health centers or the maternal and child health council

proposed for California. This type of "community participation" is perceived by some as less desirable than "user participation," and some

913 9 7
lingering doubts are present as to whether State and local government attempts to involve consumers will result in a true partnership in which

program control is shared.

The Role of the Private Sector

Numerous examples were given of ways to include the private sector in

public programs for primary care. In Great Britain, for example, the local

public health agency may provide private physicians with office space, a public health nurse, a secretary, and so on, or reduce office rent or other administrative costs. The idea is to "surround the solo physician with

community health services." Some rural programs in the United States have a nurse-midwife and physician team who alternate between public and private caregiving roles and are backed up by perinatal specialists

from a medical center. These models are reportedly unproved. One effort

to test the feasibility of public-private partnerships is a Robert Wood

Johnson Foundation project to establish networks of primary care centers

in urban areas. The project is trying to involve all health service providers

in the community. In Dr. Miller's proposal to the workshop, private providers would

continue their predominant role. Their efforts in caring for the poor even

could be expanded by better linkage with public systems, for example,

with public health outreach. Contracts specifying services to be performed

and outcome measures could be written by either Federal or State

Governments with private, nonprofit corporations at the local level. This

mode of organization might be especially attractive where a strong

tradition for local health departments to be directly involved in rendering

personal health care is not present. Dr. Silver's proposed State plan would permit private groups that

organize child health preventive programssuch as Boys' Clubs or church groupsto be reimbursed in part for their activities.

Despite their acknowledgment of the importance of private sector providers in expanded child health service programs, workshop partici- pants made numerous criticisms of the private sector, including that: Private providers, namely physicians and voluntary hospitals, lack

accountability The attitudes of local physicians have constrained efforts to

increase the services provided by local health departments Private physiciansat least in some parts of the countrydo not want any more minority patients, regardless of the payment

mechanism

Local doctors may not refer to other local doctors who have had

special trainingfor example, in developmental pediatricsbut rather to distant medical centers to avoid competition Freestanding emergency rooms quietly provide outpatient care, which may not be appropriate, thereby avoiding friction with local physicians

914 9 LI
Characteristics of Programs

Equity

Workshop participants agreed that an underpinning of equity of access

should be present to proved services. Despite attempts to ensure financial access, however, additional inequities persist because of social, cultural, and geographic barriers. Making services available may be insufficient to

ensure eqaity of access; perhaps a public agency should ensure that people actually receive the services. A public policy ofi this kind would not necessarily lead to coercionparticipation could be completely voluntary

for the individual, but not for the system. Such an expansion of the public

sector role may be unlikely, given current trends to roll back the public health and welfare programs of the 1960's. In fact, some participants predicted a major disenfranchisement.

Services

The services provided even in boundary areas and outreach should be

limited to a proved list, but not so large a list that it greatly exceeds the

standard of practice of most pediatricians, or it will have no credibility. Numerous recommendations have been presented as to what a set of preventive services should berecommendations notable for their similarityfrom which a package of services could be defined, subject to revision

as necessary.

Boundary Area. Services

The importance of services in boundary areas was established early in

the workshop. Boundary areas frequently discussed were preventive

services, social supports, and health promotion strategies. Some participants believe that preventive services should be provided by specially trained nurse practitioners separate from the medical care

system, as in Great Britian. As a practical matter, it may be impossible to

continue to pay physicians' rates for services that can be provided equally

effectively by less expensive categories of personnel. However, if separate preventive and medical care systems existed, then the links between them

would be crucial; the importance of linkages can be illustrated by the mutually reinforcing relationship between psychosocial stress and physical disease. Therefore, other participants believed that the medical-behavior- al-social aspects of health are so intertwined that a separate prevention

system might even be regressive. Social systems and social supports are a second boundary area. Numerous conditions that are unfortunate responses to the "stresses, strains, and shortfalls" of life have been moved into he purview of medicineoveruse of alcohol or drugs, violence, "behavioral" problems, marital incompatibility,- and teenage pregnancy, among others. The

situations and social conditions that underlie these problems are not currently susceptible to medical solutions; but a rationale may exist for

915
moving them into the public health sector because they require the active

intervention of other societal systems that already are public responsibilitiessuch as the judicial, social welfare, and educational systems. Strategies for health promotiona third boundary areafrequently

relate to broad social' policies that foster family and economic stability, such as those that provide for maternity leave with pay or ensure decent housing.

Multidisciplinary Approaches

Contemporary health and health-related services are not accessible to more children because many of them require the services of more than one

profession or more than one agency. This implies a need for a new setting, for coordination and cooperation of service providers, and for new

methods of communication between child care agencies and professions often trained in distinct disciplines with arcane vocabularies.

Accountability

Programs must be held accountable for meeting certain standards access, quality of services, nondiscrimination, and so on. Two principles

for establishing or maintaining accountability were put forward; (1) Putting the burden of monitoring service delivery on recipients is unacceptable. (2) When service providers and recipients are from the same

sociocultural milieu, accountability is enhanced.

Measuring Programs' Effectiveness

Unfortunately, few good performance measures exist for evaluating

health programs Although outcome measures would be' the best evalu- ation tools, process measures are usually the only ones available. Special evaluative tools are sometimes designed, therefore, as in the Iowa child

health center program. The group was advised against using reductions in infant mortality as a measure of program effectiveness. Too many variables are involved and

changes are likely to be small. Programs can have many other beneficial, but less easily measured, impacts.

Manpower and Training

An important explanatory variable in the divergent assessments of the

child health service models presented at the workshop may be whether "good people" were in key positions. Because the continued presence of good people cannot be ensured, systems are designed that presumably will function well, whoever operates them. Some workshop participants doubted whether a system can be developed whose success does not rely

on the people in place.

916
Conscientious people are needed in the government at the program

management levs-1 and at the service delivery point where they must be

sensitive to client needs and perceptions. In fact, a study of the Early and Periodic Screening, Diagnosis, and Treatment Program found that the Federal Government had maximum impact in States where a core of committed officials was present to advance the cause, lobby in State

legislatures, and work at the local (county) level. These people provided a

resource base and an infrastructure. When "budget analysts" became the decisionmakers, the system broke down. Although people at crucial decision points in every level of government must be able to make tough

decisions, the Department of Health and Human Services is a particularly

complex management challenge, for which people are generally not well prepared. More than technical expertise or knowledge about maternal and

child health issues is neededsystems knowledge also is required. By and large, the workshop group was encouraged by the increasing

ease of attracting good pediatricians into expanded public programs for child health. This is partly related to the rapidly increasing number of physicians being trained, coupled with declining numbers of middle class children in urban areas; partly it is because of pediatricians' being trained

in multidisciplinary team settings, so that such programs feel familiar. In

fact, a survey conducted by the American Academy of Pediatrics found

that most pediatricians believe child care in the future will be conducted

in pediatrician group practices, where some of the physicians pursue their subspecialty interests and the bulk of well-child care is provided by nurses. Today, however, few physicians have adequate knowledge about child

development or skills in functioning as a' member of a community-oriented

child health team.

The hope was expressed that pediatric nurse practitioners could expand

their caregiving roles outside doctors' offices. Some participants believe nurses to be particularly effective in the preventive aspects of care by dint of training, understanding of family relationships, and willingness to visit homes and establish liaisons with social agencies.

Incentives

A diverse collection of incentives was suggested during the workshop

for:

Individual participation in child health programs. If coercion is to be avoided, substantial incentives may be necessary to obtain

participation. However, demonstration projects have shown that if services are available without barriers to access, they will be used. Training of pediatricians. Trainees will go where the money is;

today, that is the tertiary care center, although community health

centers would provide a far superior training experience. Hospitals. So much Unmet need exists for psychosocial services

that it would rapidly overtake the prepaid system's ability to

provide them, unless additional incentives were present, such as differential payment.

917

911.
Institutional providers. Incentive arranglments (other than pre- payment) in hospitals and other institutions could be used to

increase productivity, decrease the use of less efficacious services, and garner savings that could be applied toward providing some boundary services. Any efficiencies gained through service or personnel cuts would have to be evaluated against performance objectives.

Organizational Matters

This grouping contains a miscellany of ideas regarding the impact of certain organizational characteristics of Federal programs on local health

care systems.

Duplication of Programs

The need for streamlining numerous health programs is urgent . One

purpose of the proposed home visiting program is to encourage better

integration of services already available at the local level. A salient example of duplicative services is the range of programs for handicapped

children. Perhaps the early assessment and intervention provisions of P.L. 94-142 (an entitlement law covering all children) "could be meshed with

similar provisions in the public health lawsMedicaid, CHAP, and EPSDT, for example. The chronic underfunding of P.L. 94-142 programs could be overcome if the health programs redefined services, benefits, or eligibility to facilitate reinily-aroement of schools for services provided. The prospects not only for the streamlining effort described above, but also for improved school health programs in general may be decreased by

the establishment of the new Department of Education.

The Advantages of Efficiency

If present funds were used more effectively, all new money would not be

required for new programs. (For the proposed home visiting activity, he Department is apparently considering how to shift and reprogram.) In an

era of constrained resources for public health, greater -fficiency offers the

only likely source of funds for new programs.

The Circumvention of Public Health Departments

Many Federal health programs as a matter of policy have bypassed State and local public health departments. In many parts of the country, fragmentation of funding has led to fences between programs, and public health departments and community health centers have become adversaries. Conceivably, health departments could expand their collaboration with such institutions as academic health centers, along the lines of

regionalized perinatal care centers.

918 9
Monitoring

Monitoring programs is extremely difficultespecially when multiple, private providers are involvedunless reporting is tied to payment for services. Monitoring should be a State responsibility with local health departments acting as their agents, but both the State and local levels must be involved.

Pluralism

A continuum of excellence is apparent in the various child health

service delivery models that the workshop group discussed, which leads to

the hypothesis that pluralism is desirable.

Advantages and Disadvantages of Project Grant Funding

Advantages

(1) Project grant fundingif well - defined outcomes are specific and

external quality and cost control standards are enforcedwould

allow the provision of boundary area services without the

potential for abuse inherent in the fee-for-service system. (2) Projects can be large (even statewide) and can make services available to all children in the service area in a variety of settings. (3) Project grants enable experimentation with different organi7ntional schemes or modes of service delivery.

Disadvantages

( 1) The results of projects are not necessarily generalizable; more generic approaches may be about equally effective. (2) Demonstration projects are often discontinuous. After completioneven if successfulthey are frequen.-4 shelved. (Thus an

objective of Dr. MacQueen's child health centers program was to

implement a strategy for continued funding after the 3-year grant expired.) Some communities, therefore, are refusing new

demonstration projects. Nevertheless, statewide demonstrations may be useful possibly because their greater size and visibility would make discarding them more difficult). (3) Permanent projects are underfunded. (4) Categorical project funding results in centers' providing collections of disparate services and administrators' contorting their programs to maintain funding stability despite changing require- ments. This fragmentation leads to ineffective services. (5) But the basic difficulty is the lack of a system for primary care

for children, into which projects could be fitted rationally.

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Long-Term Versus Short-Term Goals

Present circumstancesparticularly the apparent constraints on major new Federal programsmust be considered in designing child health

strategies. Whereas those things that can be accomplit.-4hed in the relatively

short term may be rather limited, near-term efforts should not work

against long-term goals. Some specific long-term goals were mentioned: Regarding specific care settings. In the long term, Federal policies should foster decentralization of primary care to the neighbor- hood level. Schools may be some communities' only viable

institutions for conducting a child health program; however, emphasis on this setting might create a dual system of care that separates families from children and ultimately undermines health

goals. Regarding universal entitlement. The opinion was expressed that a

system should be universally available to provide care to children

under federally established guidelines. If these guidelines are met, tax moneys could be used to support the program. Thus the 70

percent of children who now receive care from private doctors' offices or clinics would also be entitled to the defined services. A

universal system has the theoretical advantage of not defining

those who receive the services as "poor," but the attitudes of physicians who do not like to treat poorminority patients may

produce a dual system, anyway. Perhaps a universal system could be approached incrementally, in which case it could begin with

"health" rather than medical services.

Federal-State-Local Government

The most contentious issue discussed at the workshop was determining

the appropriate roles for Federal, State, and local governments in the

organization and delivery of maternal and child health services.

Standard-Setting

If any points of agreement were in this debate, they appear to have been

that the responsibility for setting health status and health service

standards should repose with the Federal Government and that strong

,national leadership is needed to produce improvements in child health

programs. State and local government also could promulgate standards

that take into account special or additional needs of their resident populations. These would not supersede Federal standards, unless they were stricter.

Meeting the Standards

Through Federal Efforts

Conceivably, establishing standards, setting target dates, awarding

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grants, and conducting appropriate oversight could be the extent of the Federal role. If States met the standards, they could receive funds

relatively unfettered. The Federal Government could serve as a residual

gam- of services, if smaller units of government failed to provide

them.

However, some workshop participants were convinced that the respon- sibility for meeting standards should also lie with the Federal Govern- ment. For one reason, it has the most reliable sources of funds. (Many State and local health departmentseven those that have been functioning wellare faced with cutbacks in funding for services.) Moreover, focusing a comprehensive child health strategy at the Federal level may

have systems advantages. Another role for the Federal Government would be to establish

consistency in the data gathering and reporting requirements of its health

programs.

Through State and Local Efforts

State and local efforts to meet the national standards could be

organized in local agencies (such as public health departments) or left to multiple providers. One view is that an organized governmental presence should be operating at the local level, which is likely to be a public health

department and could help community providers render services and fill gaps. The strategies for achieving the national health standards would be

left to the discretion of the local agencies. If health status standards were not achieved or service utilization was not maintained at predetermined, acceptable levels, the health agencies could be residual service providers or guarantors. If the State and local government agencies failed to meet the standards, the State could lose revenue-sharing moneys. (Merely

taking away funds for the poorly operating programs is insufficient, and

possibly counterproductive, as it removes any incentive to-perform.) Alternatively, the strategy for meeting national health status and service

standards could be left entirely to diverse local programs, without requiring a State and local health agency filter. In a variation of this approach, some local agency (perhaps health departments) could be

charged merely with ensuring that everyone got into the system. In either case, local health systems agencies could help fix priorities and

allocate resources according to Federal; State, and local objectives.

Criticism of Federal-State-Local Efforts

"There's more than enough blame to go around," one participant noted. Serious criticisms were raised about the effectiveness of every level of government in providing child health services. Yet, some problems that exist within eachsuch as fragmentationrequire cooperative strategies.

Criticisms of Federal Efforts

Criticisms leveled at the Federal Government's regional offices went unchallenged. Presently they are regarded as providing neither the

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/
necessary program supervision nor leadership. Ideally, regional offices would assist in State and local government initiatives. As discussed

elsewhere, some Federal policies and actions have diluted the strength of State and local health departments. Whether the Federal Government could assume a greater role in

ensuring child health services was doubted by those who believe that: The rationale for sustained support of a child health program that does not have strong State and local constituencies might be blown aside by shifting political winds. Because of the tax revolt (although expressed at the local level but intended to be aimed at higher government levels) significant expansion of Federal child health programs may be unlikely to win politial support. Beyond the State level, government becomes too large to function

effectively and is unresponsive and impersonal; for these and

other reasons, the Federal Government has proved itself incapable of delivering health services.

Criticisms of State and Local Efforts

Workshop participants' criticisms of a national plan that depends on State and local government initiatives were based on: The past unresponsiveness of local-State governments to consum- er needs and their unwillingness to serve the most vulnerable populations The recalcitrance of State and local governments in involving

consumer-users in program planning The belief that State or local governments will not accept national goals The shortage of trained manpower and the lack of appropriate organization at the State and local levels The difficulty of implementing a national program that would

involve only good health departments and simultaneously

strengthening weak ones The strength of private provider opposition to expanded public programs at the local level The possibility that "local initiatives" may be promoted as a means of avoiding Federal accountability standards On the other hand, the experiences reported by some participants support a greater State and local role. Furthermore, when program responsibilities are at the State and local level, people have more of a stake in a program

and may value it more.

Accountability

In the protracted discussion about the relative accountability of Federal, State, and local governments, it was suggested that accountability

structures must be established at each level. State demands for program

flexibility must be matched by Federal demands for accountability.

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Research Requirements

Although far from an exhaustive list, the following research require- ments mentioned by the workshop participants appeared to need special consideration.

(1) Research on preventing premature, high-risk births 7) Experiments and demonstrations on ways to provide health care

to pregnant women and children that is more comprehensive, universally accessible, and more appropriately provided and

utilized, and

(3) Research on the comparative effectiveness of various mecha- nisms for organizing maternal and child health care services

APPENDIX A

SELECT PANEL FOR THE PROMOTION OF CHILD

HEALTH WO SHOP ON ORGANIZATION OF

HEALTH SERVICES

FEBRUARY 21 AND 22, 1980

Annotated Agenda

Session I (Thursday, 9:30-12:30 and 1:30-5:30)

Organizational mechanisms to reach more infants, children and pregnant women with needed health services

Proposition Discussant

A. That federal policy should encourage R. Haggerty

some or all of the following mecha- nisms as a means of expanding the

availability of needed health services

(including preventive services) to chil- dren and expectant mothers, improving

access to these services by underserved groups, and strengthening the capacity of the health system to offer appropri- ate service-s kelating to the social and behavioral aspects of health and illness:

Question to the group:

With regard to each of the following

strategies, how would public policy have to be changed to accomplish the

923
stated objectives? Which of the six alternatives listed below are most promising and represent a high priority for public intervention?

I. Expanded support of publicly financed

organized settings, including community health centers, M&1 centers, C&Y

centers, urban health initiatives, rural health initiatives, migrant and other primary care centers. 2. Expanded use of schools as sites for case-fix t.iing,, coordination, and/or pro- vision of care.

3. Expansion of the capacities of HMO's

to meet the needs of low income

mothers and children and to provide a broad array of maternal and child

health services.

4. Expanded use of public health depart- ments as sources of primary care and

related services.

5. Strengthening the capacity of hospital OPD's as providers of and backup for primary care. 6. Home visiting to infants by public health nurses or by lay health visitors under nurse supervision.

B.Lefkowitz

R. Walling R. Hearn

3. Holloman.

CA. Miller

M. Heagarty

S. Stoiber

Session II (Thursday evening, 8:00-10:00)

Organizational mechanisms to reach more infants, children and pregnant

women with needed services (continued)

Proposition Discussant

B. That federal policy be designed to as- A. Miller

sure that all infants, children and

pregnant women receive certain defined basic health services:

Question to the group:

Should federal policy, which has traditionally been aimed at assuring the

availability of needed health services, be extended to assuring that infants, children, and pregnant women actually

receive certain needed services? On

what grounds might such a policy

924
change be called for? By what mecha- nisms would it be implemented?

Session III (Friday, 9:00 -12: CV)

Sources of support for improved organizational mechanisms

Proposition

C. That the changes needed to improve

the provision of health services for children and pregnant women are most likely to be brought about by a dual

strategy of modified and expanded

federal categorical grant programs, and

a strengthened federal role in private and public third party payment programs.

Question to the group:

What are the potentialities and limits of the federal grant approach (which might include a substantially modified

and expanded Title V), and of a

strengthened federal role in third party

payment programs and policies (which might include greater public regulation of private insurance, federalization of Medicaid, incentives for alternatives to

fee-for-service payments to providers, and national health insurance for

mothers and children)? What is the optimal mix of investment in each of

these approaches?

D. That the federal government encourage

the establishment of health districts

and taxing authority.

Question to the group:

Would it be useful, and is it realistic, to try to establish an independent lo- cal tax base and unit of governance

around which to organize all publicly

supported primary care services for children and pregnant women?

That various types of public funding

can best be combined or coordinated

by the creation of "community child

Discussant

R. Blendon

S. Jones

A. Nichols

J. MacQueen

9 9

925
centers" which would assure basic

health services for all children in the

community, with scope of services to

be determined locally.

Question to the group:

Would the creation of such a new entity be the most promising way to

overcome existing problems of frag- mentation, duplication, and gaps in

services to all children, and especially

handicap-F.:xi children?

Session IV (Friday, 1:00-4:00)

Mechanisms to assure that federal child health funds are spent effectively

at the state and local level

Propo-Ition Discussant

F. That the newly proposed federal ad- B. Lefkowitz

ministrative reform, providing a "basic

framework for an integrated Feder- al/State/local system for budgeting

and managing health services pro- grams" (whit:3h includes grants to States and local governments for the underserved), must be implemented in ways that take into account the special needs of pregnant women and chil- dren.

Question to the group:

What are the specific ways in which

implementation of these proposed re- forms must take into account the spe- cial needs of children and pregnant women, so as to promote the most

effective expenditure of federal mater- nal and child health funds at the state

and local level?

G. That the federal government assign to B. Myers

a specific public agency the responsi- bility for planning and assuring the

availability of all maternal and child

health services in any given jurisdiction.

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Question to the group:

What are the advantages of having the

federal government designate a lead MCH agency in each state, and what would be the apprcipriate scope of au- thority for such agencies?

H. That several statewide pilot programs G. Silver be initiated and finand through the pooling of federal child health funds

(with waivers contingent on the sub- mission of a state plan meeting speci- fied federal criteria), in order to dem- onstrate the effectiveness of a compre- hensive preventive health service for children.

Question to the group:

What are the potential advantages and

attendant risks of an experiment in

radical MCH federalism, and how

would such an experiment have to be designed to be feasible and yield gen- eralizable results?

Members and Representatives from the Select for the Promotion of Child Health

Jo Anne Brasel, M.D. General Clinical Research

Center

Harbor-UCLA Medical Center

Leon Cooper, M.D. Special Assistant to the Administrator

Health Services Administration

HEW

Mitchell I. Ginsberg Dean, Columbia University School of Social Work

Vince L. Hutchins, M.D. Associate Bureau Director

Office of Maternal and Child HealthHEW

Bonnie Letkowitz, Ph.D. Director of Human Services and

ResourcesHEW

Panel

John C. Mac Queen, M.D. State Services for Crippled Children

University of Iowa

Katherine B. Nuckolls, Ph.D., F.A.A.N.

Professor of Nursing, School of Nursing University of North Carolina

Lisbeth B. Schorr

Consultant, Children's Defense Fund

Scholar-in-Residence, Institute of Medicine

Aaron Shirley, M.D. Project Director, Jackson-Hinds Comprehensive Health Center

921 927
Jeanne C. Sinlcford, D.D.S. Dean, School of Dentistry Howard University College of Dentistry

George Tarjan, M.D

Director, Mental Retardation Program and Child Psychiatry Division

Neuropsychiatric Institute UCLA

Regina McPhillips, Ph.D. Acting Director Program Development Division Office of Child HealthHEW

Charlotte When

Founding Chairperson, Council

on Maternal and Infant

Health

State of Georgia

Select Panel Staff

John A. Butler, Ed. D. Staff Director

Sarah S. Brown, M.P.H. Associate Director

Participants in the Child Health Panel Workshop February 21 and 22, 1980

Nancy Amidei Director

Food Research Action Center

Sue Bennett, P.H.N. Louisiana Health Department Public Health Nursing Supervisor Certified Nurse-Midwife

Robert Blendon, S.C.D. Vice President

Robert Wood Johnson

Foundation

Donald A. Comely, M.D. Professor and Chairman

Department of Maternal and Chid Health

Johns Hopkins University

Anne-Marie Foltz

Assistant Professor of Public

Administration

New York University

Howard Freeman, Ph.D.

Director

Institute for Social Science

Research

928 j)2

George Greenberg Program Analyst Office of Planning and Evaluation

Department of Health, Education and Welfare

Morris Greene, M.D. Professor and Chairman

Department of Pediatrics University of Indiana Medical School

Robert Haggerty, M.D. President

Grant Foundation

Margaret Heagarty, M.D. Director

Department of Pediatrics Harlem Hospital Center

Ruby Hearn, Ph.D. Robert Wood Johnson

Foundation

John S. (Mike) Ho Boman, M.D. Professional Staff Member

House Ways and Means Committee
Stanley B. Jones Health Policy Alternatives, Inc. (author of Panel background

paper on financing)

Lorraine V. Klerman, Dr. P.H. Heller Graduate School

Brandeis University

(author of Panel background

paper on adolescents)

Wendy Lazarus Consultant

Children's Defer-r. Fund

Arden Miller, M.D. Professor and Chairman

Department of Maternal and Child Health

University of North Carolina School of Public Health

Bever lee A. Myers Director

California State Health

Department

Andrew Nichols, M.D. Associate Professor

Family and Community Medicine

University of Arizona

George Pickett, M.D. Director of Health

State of West Virginia

Linda Randolph, M.D., M.P.H. New York City Office of Public Health

George Silver, M.D. Professor of Public Health

Yale University School of Medicine

Susanne Stoiber

Deputy Assistant Secretary of Health

Department of Health, Education and Welfare

Helen M. Wallace, M.D. Professor and Chairman

Maternal and Child Health

Program and Family Health Program

University of California School of Public Health

Robert Walling Program Analyst Bureau of Education for the

Handicapped Office of Education

Karl Yordy Executive Officer

Institute of Medicine

APPENDIX B

MEMORANDUM Department of Health, Education, and Welfare Public Health Service

DATE: November 7, 1978

SUBJECT: Enrollment of the Elderly and the Indigent in HMOs

The requirement that HMOs enroll persons broadly representative of

the various age, social, and income group areas has not been achieved. This has manifest itself in the inadvertent discrimination against our elderly and indigent. This large and growing group of people with limited

financial resources are, perhaps, in the most need for benefits provided by

9 ) 3

929
a cost effective organized system of health care delivery. The reasons for

this situation are numerous and complex, however, simply put they are: (1) The primary focus of HMOs marketing effort has been directed

toward the young, healthy, private sector employee groups. (2) Many States regulatory and licensing agencies have been

reluctant to enter into contracts to provide care for Medicaid

beneficiaries.

(3) Cumbersome and incentive lacking Medicare reimbursement systems have precluded meaningful participation for the elderly. (4) The HMO Act itself does not specifically require that Plans seek

or receive a Medicaid contract.

(5) The HMO Qualification Development process does not actively

encourage Medicaid participation. (6) Some Plans may simply not want to serve this clientele. (7) HMOs have been reluctant to subject tIlcinseli:rs to the addition- al regulatory agencys that this would entail. To provide prepaid

services to the elderly or indigent persons, HMOs must contract with HEW to provide Medicare benefits and with States to

provide Medicaid benefits.

Medicare

Meaningful participation by this group of people awaits enlightened

legislation to allow full risk prepaid capitation agreements. Reasonable

rate reimbursement mechanisms could allow these people to receive a much broader scope of benefits and thereby providing an incentive to join

an HMO. Alternately, the overall cost of providing the same scope of benefits to this group of people could be reduced.

Medicaid

The option for State agencies to contract with prepaid health plans has existed since 1970 but Medicaid enrollment remains less than one percent of the total eligible. Less than one-third of the qualified HMOs have State

contracts for Medicaid. Only twelve States have any contracts with HMOs and sixteen States that have qualified HMOs do not contract for Medicaid

services.

It has been conservatively estimated that a savings of 15 percent in medical care delivery cost would be accomplished for each individual

transferred from the fee-for-service Medicaid or Medicare programs to the HMO program. In addition, these individuals would benefit from an

organized system of health care delivery that guarantees access to care

and has some controls to ensure the quality of care delivery.

HCFA/HMO Medicaid Initiative

HCFA is supporting a Medicaid HMO initiative to achieve three goals. They are: (1) Increase the number of qualified HMOs which contract with

States.

930

1
(2) Increase the number of States which contract with HMOs. (3) Increase the number of Medicare/Medicaid beneficiaries enrolling in HMOs. In order to be successful in this initiative, a number of barriers will have to

be overcome.

State Agency /HMO Barriers

Some of the barriers that the State agencies and HMOs must overcome

are:

(1) The need for State enabling legislation, regulation and contracts. (2) A methodology for determining the appropriate capitation rates. (3) Difficulty in HMO marketing to Medicaid beneficiaries and the

attendant high costs. (4) Assurance that quality medical care will be delivered. (5) Stabilization of the mercurial Medicaid eligibility. (6) The additional monitoring and regulation required of the HMOs.

Beneficiary Barriers

The primary concern of the Medicaid beneficiary is survival. Health care becomes secondary to cash grants, nutrition, and housing for the family. They have become conditioned to receiving crisis intervention medical care from emergency rooms and county hospitals. Some of the barriers

that must be overcome to encourage Medicaid beneficiary enrollment are: (I) Education. Medicaid beneficiaries are not generally knowledgea- ble about the health care options available to them. (2) There are few incentives to encourage the Medicaid beneficiary

to enroll in health maintenance organizations which may restrict

their freedom of choice for a physician.

9 '1

* U.S. GOVERNMENT PRINTING OFFICE : 1981 0 - 339-243 (Vol. IV)

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