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PS 012 109

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 I:

major Findings and Recommendations.

Public Health Service (DHHS), Rockville, Md.

DBBS-PHS-79-55071

81

452p.: For other volumes of this report, see PS 012

110-112 and PS 012 137.

Superintendent cf Documents, U.S. Government Printing

Office, Washington, DC 20402 (Stock No.

017-302-00140-2, 18.50).

MF01/PC19 Plus Postage.

Accident Prevention: *Children: Federal Programs:

Financial Support: Health Education: Health Needs:

Healtb Personnel: *Health Programs; *Health Services;

*Mothers: Needs Assessment: Nutrition; Pregnancy:

Problems: *Program Evaluation: *Program

Improvement

ABSTRACT

This first volume of the 1987 Report of the Select

Panel for the Promotion of Child Health presents the panel's major

findings and recommendations in several areas of maternal and child

health. Section I, the Introduction, addresses five major concerns

related-to health care that were identified by the panel. These

concerns were (1) that programs to prevent disease and promote -health

are neither available nor adequately used even when available: (2).'

that sharp disparities persist in both health status and use of

health services according to family income, ethnic background,

parental education, and geographic location: (3) that the current

health care system insufficiently recognizes or supports the mole of

the family as the primary source of health care for children: (14)

that the organizational, administrative, financial, and profesetonal

training aspects of today's health care system have not been adat,ted

to cope with current family 'health problems: and (5) that public

health programs are not working effectively in relation to one

another. Sections II through V discuss in detail these concerns and

focus in particular on how they can most effectively be dealt with in

the 1980s and beyond.. (Author/MO

2

**********************************************************************

* 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 DEPARTNAENT OF HEALTH.

EDUCATION & WELFARE

NATIONAL INSTITUTE OF

EDUCATION

THIS DOCUMENT P-4AS BEEN RE PROOuCEO ExACTLY 45 RECEIVED IRON*

THE Pe soN OR ORDANTZA T ION OR 'GIN.

ATINO I T POINTS OF vIEJ4 OR OPINIONS

STATED 00 NOT NECESSARILY REPRESENT OFF IC IAL NATIONAL INST i ijE cp. EptiCA'.ON POSITION OW IC

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 I

Major Findings And

Recommendations

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Public Health Service

Office of the ALiistant Secretary for Health

and Surgeon General

DHHS (PHS) Publication No. 79-55071

ti
0

DEPARTMENT OF HEALTH AND HUMAN SERVICES

OFFICE OF THE SECRETARY

December 2, 1980

Honorable Patricia R. Harris

Secretary

Department of Health and Human Services

SELECT PANEL FOR THE PROMOTION

OF CHt1-0 HEALTH

1132 M STREET. N.W. RM. 711 WASHINGTON. O.C. 20031e.

202 -434 -A 03

Honorable Edward M. Kennedy

Chairman, Subcommittee on Health and Scientific ileearch

Senate Committee on Labor and Human Resources

Honorable Henry A. Waxman

Chairman, Subcommittee on Health and the Environment

House Committee on Interstate and Foreign Commerce

Dear Secretary Harris, Senator Kennedy, and Congressman Waxman:

I am proud to transmit to you the reparI r the Select Panel

for the Promotion of Child Health, in accor..1,. with Public Law

95-626 which created the Panel.

. The 17 members of the Panel and our staff have devoted an

extraordinary amount of time, energy, and--me hope--wisdom 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 the 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.

iii
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 we 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 sweiil.of

issues. In accordance with our congressional mandate we hive

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 focL3.Apd 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.

iV
Honorable Patricia R. Harris

Honorable Edward M. Kennedy

Honorable Henry A. Waxman

Page Three

The Panel has asked me to call your attention te-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 Lealth 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 .oust include fathers as

well as mothers, 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 as

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 child's

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 en3age

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

in 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 ies 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,

LI,itt (53 st.A.,

Lisbet!-. Bamberger Schorr

Chairperson
MEMBERS OF THE SELECT PANEL

FOR THE PROMOTION OF CHILD HEALTH

Lisbetli Bomberger Schorr, Chairperson Washington, D.C.

' John C. MacQueen, 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

Ditector, 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 Gynecologiit 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, 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 J ane. 1980 to December 1980; he replaced Leonard D. Schaeffer who served from March 1979 to June 1980.)

vii
Katherine B. Nuckolls, Ph.D.

Professor of Nursing, School of Nursing University of North Carolina Chapel Hill, North Carolina

John Palmer, Ph.D. '1. 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. st Assistant Secretary for Health and Surgeon General of the Public

Health Service, DHHS

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

Jackson, Mississippi

Jeanne C. Sinkford, D.D.S., Ph.D.

Dean, School of Dentistry Howard University College of Dentistry

Washington, D.C. . George Tarjan, M.D. Professor of Psychiatry Direcior, Division of Mental Retardatior "rogram and Child Psychiatry

Neuropsychiatric Institute, UCLA School of Medicine

Los Angeles, California

Charlotte Wilco

Founding Chairperson, Council on Maternal and Infant Health,

State of Georgia

'Ex Officio voting members

1-TIse 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

problem. They believe the Panel's report is an extremely usefial document. However. the specific

.programmatic and budge: 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

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

endorsement of the recommendatior

viii
STAFF REPRESENTATIVES FROM THE

DEPARTMENT OF

HEALTH AND HUMAN SERVICES

For the Assist' anz 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 Kessell, 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

.r"

For the Assistant Secretary for Planning and Evaluation

Bonnie Lefkosvitz

Director, Division of Health Services 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.D. Director, Health Services Branch, Administration for Children, Youth,

and Families

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

Services

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

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

Bureau of Community Health Services
4

SELECT PANEL FOR THE PROMOTION OF

CHILD HEALTH

- Professional Staff

John A. Butler, Staff Directoi

Sarah S. Brown, Associate Staff Director Harriette B. Fox, SeniorProgram Analyst and Project Directcr, Volume II

Mary Grace Koval., Senior Statistician and Project Director, Volume III

Martha Angle, Senior Editor; Volume I K. C. Cole, Writing Coniultant - Elizabeth des Cognets, Research Assistant Barbara G. Furs*, Editor, Volume IV

Jeanne G. Holzgrefe, Consulting Policy Analyst Ruth J. Katz, Associate Program Analyst and Staff Attorney Lorraine V. Klermar, Senior Research Associate

Jessica K. Laufer, Research Associate

Wendy Lazarus, Consulting. Policy Analyst Amanda F. MacKenzie, Pubic 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 Assistant 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

E,

xi
ACKNOWLEDGMENTS . L

The Panel wishes to express profound appreciation to its highly

competent, hard working, and dedicated staff.. We are particularly

indebted to John Butler and Sarah Brown for their .splendid leadership

throughout our 18 months of work. We are also deeply grateful to the members of the Departixent of Health and Human Services who assisted us, and to the contributors listed in the back of this volume. An

extraOrdinary number of individuals permitted us to disrupt their lives, gave unstintingly of their time and wisdom, tolerated our deadlines, and

responded to our requests for help with unwavering understanding, accurate information, and fresh insights: This can only be explained by

their deep commitment to the better health Of the Nation's children.

a

low
CONTENTS

Letter of Transmittal ill

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

Staff Representatives from the Department of Health and

Human Services ix

Staff of the Select Panel 4,01' xi

Acknowledgments xiii

Summary

Section. L Introduction 23

Chapter 1. Major Concerns 25

Section IL Health PrIAIDedelli and Pronsodon . 71

Chapier 2. Reducing Environmental Risks 73

Chapter 3. Health and Behavior 103

Chapter 4. Improving Nixtrition 141

Seetio.IIL The Co ntent, Orgaalzation, and Financing of Health Services 175

Chapter Chapter

Chapter

5. Needed Services. 177

6. Improving the Organization of Health Services 223

7. Delivery Problems of Special Concern 257

8. Organizing Services for Selected Populations 285

9. Financing Health Services for Children and

Pregnant Women 319

Section IV. Governmental Reladonships 339

Chapter 10. Chapter 11.

Section V.

Chapter 12. Chapter 13.

Structuring the System 341

Federal Administrative Arrangements .371

Manpower mad Rewards

Health Professionals

391

393

Rtstrith and Data Needs 405
Contr;butors 429

B. Witnesses at Panel Hearings 433

C. Background Papers Prepared for the Select Panel 439

D. Disset ...ing Views 442

E. Sources for Figures in Volume I 443

F. Glossary: Abbreviations for Organizations and Agencies ... 446

G. Legislative Mandate. 448

Index to Recommendations 451

Tr

4.
Volume I

w. Major Findings And

Recommendations

Iv

...11.
SUMMARY

It is a biological fact that human infants and children depend upon

others to an extent not found in any other species. In tacit recognition of

this fact, all human. societies, ancient and modern, have -developed

elaborate systems of shared family and community responsibility for the

ycung. The makeup of such systems and the preciFe division of duties

'within them have varied from one culture to another and from one

generation to the next. But the central theme of shared responsibility for

the young endures. In the United Statesl\today, our system of shared responsibility has contributed much to ensuring the healthy growth of our children. But despite great achievements, we are still falling short of doing what we believe most Americans want to see done to promote the health of all our

children. In recognition of this fact, the Congress created a Select Panel

for the Promotion of Child Health to assess the status of maternal and

child health and to develop, for the first time, "a comprehensive plan to

promote the health of children and pregnant women in the United States."

The 17 private citizens and public officials who undertook this task

carefully scrutinized existing maternal and child health data, knowledge,

and experience. We found widespread consensus about the interventions

likely to be effective, about the programs that work well and the obstacles

that keep them from working better, about ways to get the most out of the

money we are already spending, and about improvements that could be achieved for relatively little more. We have also found that a large

proportion of the most burdensome child health problems can be

prevented or ameliorated at reascanable and predictable costs through the

application of knowledge already at hand. The Panel was struck by the

contrast between how much we know about promoting the health of

pregnant women and children and how little is actually reaching some of

the most vulnerable among them. Similarly, we were impressed by the

number of highly successful efforts currently underway throughout the

country, but discouraged that they have not been systematically built

upon and expanded. Even though we discovered much agreement on what needs to be done,

we found the task of developing specific proposals to improve maternal

and child health even more formidable than we originally anticipated. It

soon became evident that our very mandate was bucking widespread

feelings of alienation from Government, and a rising tide of cynicism and

hostility toward all social programs. We elieve-that it is possible to take account of these currents in our

political' climate without becoming immobilized by them. We recognized

1
early in our work that we must be cost-conscious as well as compassion- ate; incremental but with a clear vision of the long-term goals toward

which we aim. We have tried, as Congress asked of us, to be comprehen- sive, but without being unrealistic. We have made some sweeping but

practical proposals. They reflect the broad consensus in the land that even

the best public programs and policies can be made to function better when

they are more rationally and coherently related to one another. Perhaps most important in terms of providing a basis for action over the next decade, our proposals are justified by both a human concern for the

young and the self-interest of adults. Our recommendations to promote maternal and child health are based on our deep beliefshared, we are

convinced, by most Americansthat children matter for themselves, that

childhood has its own intrinsic value, and that society has an obligation to

enhance the lives of children today, quite apart from whether we can

prove later benefits in adulthood. We do not rest our case solely upon such convictions, however. What

we offer is also a prospectus for a sound investment in America's future, in

economic as well as social terms. Healthy children represent a major economic asset. As today's children grow to adulth a e will have to

perform increasingly complex tasks, in an age of constant hnological change, in order to protect our natural environment, taro our

standard of living, keep our economy competitive with oth -4 nations,

preserve our defense capabilities, and maintain our humanitari - = values.

We will tomorrow be dependent upon the very children who today are dependent upon us. Each and every one of themmale and female, rich

and poor, black, brown, and whiteis both a precious individual and a

valuable national resource. Improving the health of today's children not only enhances the quality of their lives immediately, it also expands their potential for significant contributions to the Nation as adults. We call upon all Americanspublic officials and private citizens,

parents and professionals, leaders at the local, State, and Federal levelto

join in concerted efforts to make certain that policies and programs in the 1980's, in both the public and private sectors, reflect a commitment that does justice to the needs of all of the Nation's children.

CHAPTER SYNOPSIS

Section I Introduction

Chapter 1: Major Concerns

In the course of our work, five overriding concerns emerged. It is to

these concerns that we have addressed our analysis and recommendations:(I) Many forms of disease prevention and health promotion are demonstrably effective, especially for children and pregnant women, but still are neither widely available nor adequately used

even when available.

2
(2) The health status of American children has improved dramatically over the past two decades, but not all groups have shared

equally in the progress. Sharp disparities persist in both health

status and the use of health services according to family income,

ethnic background, parental education, and geographic location.

(3) The profile of child health needs has changed significantly over

the course of this century, partly as a result of success in

combating infectious disease, partly because new problems have

emerged. But the (organizational, administrative, financial, and

professional training aspects of our health care system today

have not been adapted to cope with current health problems,

which have intertwined psychological, -environmental, social,

and behavioral components. (4) While the family is and will remain the primary-source of health

care for children, the current health care system insufficiently

recognizes or supports this role. Nor has the system acknowledged or adequately responded to the health implications of the

changing composition and circumstances of the American

family

(5) The Nation's increased investment in maternal and child health

over the past two decades has spawned many new programs, but

they are not working effectively in relation to one another.

Public programs have made a significant contribution to improving the health of the Nation's mothers and children, but there

remain gaps in and between services; fragmentation and duplication in both programs and services; and conflicts among various

levels of government and among a variety of programs.

Section IIHealth Protection and Promotion

Many of the strongest influences on child health lie beyond the reach of

personal health services. These include the social environment, the

physical environment, nutrition, and health-related behavior:-

Factors in the social environment such as family income, parental

education, opportunities for productive work, minority status, child care

arrangements, and the availability of community supports for adolescents

and parents of young children all exert a powerful influence on health. We

recognize the significance of these- influences, but offer no extensive

recommendations in this area because it lies beyond the scope of our

mandate.

Chapter 2: Reducing Environmental Risks

Hazards in our physical environment can profoundly affect the health

of our children both before and after they are born. Our review of the

evidence on environmental hazards to mothers and children suggests there

are four risks which deserve special attention in the coming decade:

accidents of all kinds, with emphasis on motor vehicle accidents and those

in the home; chemical and racjkation risks, including chose posed by toxic

3
'wastes, pesticides, lead and other pollutants; hazard; from drugs and

foods, with particular focus on substances presenting special risks during

pregnancy; and problems caused by inadequate or unhealthful water

supplies, with attention to the need for wider fluoridation, potable water

in all homes, and adequate sanitation. These four types of risk include old

problems which could be prevented through the application of knowledge

already in hand, and new or newly discovered problems, which often are

complex in causation and less easily understood or addressed.

Accidents, especially motor vehicle acci:lents. are the leading cause of

death and disability among children and adolesvilts. The United States is

second only to Canada among ten Western industrialized nations in its

rate of accidental deaths among children. The Panel believes this state of

affairs is unacceptable, and can be changed in a Nation as resourceful as

ours. A major new national accident prevention strategy should be

initiated, with strong participation by private industry, citizen groups, the

media, and Government. This strategy should take advantage of both

private initiatives and public policy instruments, including technical innovations, regulatory actions,_ and new approaches to education of

children and parents. The evidence suggests that many kinds of injuries and health problems

can be more economically and effectively reduced by changing the

ervironments in which people live, work and play, than by trying to

change behavior directly. Thus, for example, safer automobile construction and better passive restraint systems in automobiles may be more

effeCtive than increased expenditure on driver education_

Among the most worrisome, pervasive, and complex environmental

health hazards are the numerous chemicals and sources of radiation to

which Americans are exposed in the home, at work, and in the

neighborhood. Toxic chemicals and radiation pose special risks for

pregnant women and for children because of the unique susceptibilities

early in the life cycle and because effects may be cumulative over the

lifespan. The Panel believes the Nation should clean up chemical wastes,

establish safe exposure levels fcr insecticides and pesticides, monitor the

use of X-rays, and take other necessary actions to protect the health of

current and future generations. One traditional public health objective which requires no new technology or knowledge is the elimination of obvious contaminants and sources

of infectious disease from water systems. Most Americans now benefit

from safe and healthy water, but three problems remain: many community water supplies are still not fluoridated, some families still lack indoor

plumbing, and certain potentially dangerous chemicals are still found in

drinking water. The Panel believes that effective strategies to reduce environmental

risks for children and pregnant women must involve all Americans, and

not just the Government. Strategies for health protection should not be

autoniatically equated with regulatory action. But if Federal policy is to

continue to play an important role in protecting the health of children and

pregnant women, various Federal agencies will need to strengthen

considerably their coordination with one another over the coming decade.

4
Chapter 3: Health and Behavior

Health-relevant behavior is an' integral part of lifestyle, which starts

forming in infancy. It is influenced by a wide variety of factors including

the examples set and instruction given by parents, siblings;. peers, schools, religious and community groups, and the media. Socializationthe

combined effect of all these factorsis _far more powerful than any single

attempt to teach new behaviors. But we now know a good deal about how

education in the family, schools, the media, the workplace, and the

community can exert a significant positive influence on health Habits.

A mother's influence on the health of her child begins even before birth, when a number of maternal habits such as smoking, drinking, and drug

use can affect the outcome of pregnancy. The Panel believes that prenatal counseling and anticipatory guidance for parents, including preparation

for childbirth and education for parenting, should be more widely

available from health care providers, private voluntary organizations, and

community agencies. Similarly. guidance and support in the period

immediately after birth and in the first year of life can help a family cope with issues of infant feeding, how to manage a difficult baby, how to

recognize illness, and how to provide a safe and stimulating environment for an infant. The perinatal period also is an opportune time to link women and their families with other services and supports to ensure

continuity in the availability of primary care. The rapid increase in r ,.mbers of preschoolers attending early education and day care progr _ins offers a new opportunity for health-related

education. Eating habits, dental health practices, and other health

behaviors have their roots in early childhood, and the Panel urges that preschools and programs such as Head Start be used as sites for health

education and parent counseling as well as zarly identification of health

problems. Television exerts a powerful influence on formation of behavior from a very early age. The Nation must improve the quality of programming

directed at children, particularly with regard to both implicit and explicit health messages; we must also preserve our capacity_for regulatory action

aimed at mitigating any negative health consequences of tele-Vision programming and advertising targeted toward children. In addition, parents, policymakers, and communitI groups should encourage alternatives to excessive television viewing among children. Inordinate time spent watching television diminishes the opportunity for more active ways of

learning about life. Many school health education programs at present are neither suffi- ciently comprehensive nor sufficiently attuned to the influence of peer culture and other important determinants of youthful behavior to be truly

effective in promoting good health habits. The content of school health

education should remain a matter for local determination involving active parental participation, but should include sound information and guid- ance on such topics as eating habits and nutrition, exercise, smoking, alcohol and drug use, d iving safety, human sexuality, family develop- ment, coping and stress management, and environmental conditions

5
affecting health. Physical education programs in particular are an area of

vast unrealized potential. These should place new emphasis on lifetime

fitness and health maintenance skills as well as competitive team sports.

Because so many forms of behavior with lifetime health consequences

are formed or first tried in adolescence, health education activities are

especially important for youngsters 10 to 18 years old. Although most

adolescents are physically healthy, problems ranging from accidents to

substance abuse and unwanted pregnancy can result from immature

judgment combined with uncertain self-esteem and strong peer pressure.

Adolescents need more information about the effects of their lifestyle on

their present and future health, but such information must be presented in

ways which ar likely to be taken seriously by them. This suggests a

special responsibility for those most likely to be heeded by teenagers,

including influential teachers and community leaders, sports figures, and

television and radio celebrities.

Chapter 4: Improving Nutrition

The critical role that nutrition plays in health has not been adequately

recognized by the- health community generally, including those whose

principal focus is maternal and child health. We share the developing

consensus that nutrition is a major, not marginal, component of efforts to

promote health and prevent disease, especiall:, during pregnancy, infancy,

childhood, and adolescence when the human organism is growing and

developing. While there are still some who lack adequate food, starvation and gross

nutritional deficiency diseases are no longer the major problems they once

were. Today's nutrition problems are more likely to involve dietary

excesses and imbalances which may in turn be implicated in the

development of leading chronic degenerative diseases. Adequate nutrition

is especially important for some mothers and children who, by virtue of

such factors as socioeconomic and minority status, age or cultural

background are at special risk ofnutrition-related problems

The Panel identified four ways to improve the nutritional status of

mothers and children:

(1) There must be a new and vigorous commitment in the health

system, schools, the media, private industry, and Government to

inform and educate families more adequately about healthpromoting and risk-reducing diets. The Panel urges the Federal

Government to take a major leadership role in developing and

disseminating norms for appropriate nutrition. Nutrition-related

guidance must take cognizance of our new "nutrition environment," which is characterized by new patterns of eating, a

rapidly changing food supply,' phenomenal growth in convenience and processed foods, and fast food restaurants.

(2) Nutrition services must be better integrated into health care.

Health care providers should specifically address their patients'

nutrition-related needs as part of the full range of health services

offered, and should link their practices to 'nutrition services in

their communities.

6
(3) Eicisting public food programs also must be strengthened and

expanded. Over the long run, the Supplemental Food Program

for Women, Infants and Children (WIC) should be enlarged to

serve all who are eligible by income and nutritional risk; State and local health care systems which provide the base for the WIC program should be expanded accordingly. (4) Research is needed to develop a better understanding of children's diets, nutrition, and health status; to identify individu- al and family nutrition-related behaviors that increase children's

risks of disease and to develop ways to help families change such behaviors; and to develop greater understanding of the effects of early feeding patterns and nutritional status on long-term

development and adult health status.

Section III The Content, Organization, and Financing of Health Services

The Panel concluded, early in its work that any proposals we might make for changes in the organization and financing of health services

should grow out of an assessment of what services children and pregnant women actually need, in addition to an analysis' of current patterns of service use and the strengths and shortcomings of existing programs. We

focused our attention most heavily on primary care, in the belief that it is

the area with the most urgent unsolved problems. Similarly, we directed much of our analysis to the way in which health services for mothers and

children are organized and financed, believing that such health system

components exert a major influence on health status.

Pulpier 5: Needed Services

The task of defining "needed services" was a fundamental first step in

the Panel's work and served as the basis for many of our subsequent recommendations, particularly those regarding the organization and

financing of health services. Because health problems in this group range

from the biomedical to the psychosocial, needed services include services such as counseling, anticipatory guidance, and various information and

education activities oriented primarily to psychosocial issues, in addition

to traditional medical care. We focus mainly on services that are preventive in nature and are

typically delivered through primary care systems. This orientation stems both from the Panel's mandate and from our belief that many of the

strategies most likely to decrease overall mortality and morbidity in mothers and children lie in the domain of preventive services and primary

care. This emphasis is accompanied by our conviction that the expansion

and improvement of secondary and terziary services to mothers and

children who need such care is also. critical and requires more adequate

resources and improved coordination-between primary care and more

specialized services.
. Chapter 5 presents lists of health and health-related services that should

be fully available and accessible to women in the reproductive age span,

including pregnant women; infants in the first year of life; preschool and

school-agre. children; and adolescents. The process of damning needed services led us to three major findings.

First and most important is the conclusion that for three broad classes of

services, there is such a clear consensus regarding their effectiveness and

their importance to good health that it should no longer be considered

acceptable that an individual be denied access to them for any reason:

Prenatal, delivery, and postnatal care Comprehensive health care for childrsn from birth through age 5

Family planning services A second category of services which merit special attention includes

mental health and related psychosocial services, dental services, genetic

services, and services that promote access to care. Although each has

unique attributes, they have in common not only their importance to

health but also the fact that -they are not now adequately available,

particularly to some of the groups most in need of them, and that they

have not been accorded sufficient prominence in current views of the

essential components of maternal and child- health care services. By

singling =them out for specific discussion, the Panel hopes to strengthen the

national consensus regarding their value in health promotion. Third, a new mechanism is needed to serve a variety of functions aimed

at improving the content, quality, and availability of health services for

mothers and children. One reason many services we have identified as

needed are unavailable or underutilized is that they are not covered by

public and private third-party payment plans, in part because of the

nature of the services themselves. They tend to be difficult to define

precisely, andin greater measure than is true for medical servicestheir

effectiveness appears closely related to the circumstances under which

they are provided, by whom, and in relation to what other services. To

help provide information on such issues, we recommend that a Board on

Health Services Standards be created, or existing institutions strengthened

and consolidated, to perform the following functions:

Review and define the health services that should be available to

mothers and children in light of new knowledge and changing

health problems. Provide guidance to third-party payers and purchasers of health

insurance regarding the effectiveness and appropriate' use of a

given service or sets of services, and the circumstances under

which such services should be provided and financed.

Provide information to third-party payers _regarding the likely

effects of their payment policies and practices on the availability

of needed services, professional personnel, facilities, and other

health resources.

So that work along these lines can proceed promptly, we recommend

that the Secretary of Health and Human Services convene an ad hoc

group to propose the precise nature, composition, and authority of the

8 3
Board within the broad guidelines we propose, and that the Congress act rapidly to estalOish the Board or a similar mechinism to perform these

important fiincticons.

Chapter 6: larproving the Organization of Health Services

Primary care for children and pregnant women is currently provided under a wide variety of arrangements, which range from private physicians' offices to the public schools, from health department and

hospital clinics to community health venters and health maintenance organizations (HMO's). American connmmities vary so widely in their needs and resources, and pane so highly the diversity of their own ways of solving problems, that it is neither feasible not wise to attempt to move the Nation toward one

standard way of deliVering health services to mothers and children. However, we have identified specific organizational attributes which

should be incorporated into all provider arrangenterts. The effective organization and structuring of services is especially important for families with handicapped, chronically a or severely ill children;. for pregnant women who for social or medical reasons are at high risk; and for lowincome families, who have greater needs for health and related services and fewer resources to negotiate their way around a complicated maze of fragmented health services. Since these categories of families include perhaps one-fifth of all children and pregnant women at any one time, and one-fourth to one-third over a period of years, the need for more highly

organized primary care is not circumscribed, but spread widely through- out the population. The attributes that we have identified as important components of effective primary care provider arrangements are: Comprehensive services Accessibility Capacity for outreach Coordination of services

Continuity of care Appropriate personnel arrangements Accountability Consumer participation Partnership with parents We have analyzed a number of existing provider arrangements with

these aura:pus in mind, and have made proposals for strengthening them. We belieive that, over the long term, primary care physicians should be encouraged to join in practice with other physicians and with other health

professionals. Dentists, too, should be encouraged to join in practice with

--other dental profcssicinals. Simultaneously, new efforts must be made to develop better links between providers in office-based practice and other sources of care, services, and support in the community. Hospitals that provide a substantial amount of outpatient care to

children and pregnant women must make fundamental changes in their

9
organizational arrangements by establishing primary care centers, hospital-based group practice, and better linkage with other sources of care in

the community. None of this can be accomplished without changes in the

financing of hospital outpatient services, and we recommend a number of

specific changes toward that end. Publicly financed comprehensive care settings (including community health centers, migrant health centers, children and youth projects,

maternity and infant care projects, some health department programs, and

rural primary care centers) have been highly effective in providing

previously unreached populations with needed health services, with

subsequent decreases in hospitalization rates, infant mortality rates, and

the incidence of preventable diseases in the areas served. They remain a

model for the delivery of high-quality care in the Nation's areas of

provider scarcity and high health needs. We believe these programs, along with the deployment of National

Health Service Corps personnel, are the best instruments for increasing

access to and availability of primary care services for children az. cl

pregnant women in underserved areas, and that the Congress shoull

increase its grant support to allow existing comprehensive care centers ..co

serve more clients and to permit their expansion to additional sitesBecause HMO's provide cost and quality controls, the opportunity for

collaboration among a variety of health workers, and a system of

financing which encourages the provision of primary care and preventive

services, the Panel urges that all HMO's expand their ability to provide needed seiices to children and pregnant women, and that Federal

authorities take the steps necessary to make it more attractive for HM0'i

to enroll low-income mothers and children_

Support for primary care units organized and sponsored by. qualified

local and State health departments will be even more important during the

next decade-than in the past. In many areas, no other provider is as likely

to offer care at moderate expense to the inner city or rural poor and the

medically indigent We therefore recommend that Federal, State, -and

local authorities support health department efforts to offer comprehensive

primary care, rather than individual components of preventive care.

School -based health services should be considered a desirable way of

delivering primary health services to school-aged children, and possibly to

preschool children, in those communities where it is possible to utilize

schools as the site for the provision of health services rendered under the

auspices of an appropriate health agency, and where parents support and

actively collaborate in fashioning and maintaining such arrangement

Nonetheless, there are many school systems where it will not seem wise to

locate a comprehensive primary care program in the schools. In such

instances, professionally qualified nurses should provide health education,

counseling and preventive services, work with parents to link children with

other health services, and 'provide professional nursing supervision for

children with chronic illness or handicapping conditions. Similarly, we

believe a more extensive commitment of resources aimed at improving

health services for children in day care, Head Start, and other preschool

programs is essential.

10 4 ) - 0;mo
Chapter 7: Delivery Problems Of Special Concern

In its review of arrangements for the delivery of needed health services 7( infants, children, adolescents, and pregnant women, the Panel identi- ed a number of special challenges or opportunities in organizing health

services that cut across individual provider arrangements. We believe

these should be specifically addressed in the formula:ion of public policy.

Home Visiting

Renewed interest in home visiting services has developed from a growing recognition that many services are best provided outside of large

institutions, that traditional sources of support for many pregnant women

and new parents are often no longer available, and that efforts to link

persons with the services they require are often essential to obtaining good health care. Federal, State, and local authorities should substantially

increase their support for home visiting programs. Such increased support should be of sufficient magnitude to: permit a substantial number of States and communities to use home visits by public health nurses or other qualified personnel as one means of ensuring access to the minimum basic health services, for children and pregnant women discussed in chapter 5; enable various health care providers to establish or reestablish home visiting programs as a routine component of maternal and child health

care; and allow for the evaluation of a wide range of programs.

Primary Mental Health Care

Many health problems which come to the attention of primary care practitioners are either emotional in origin or have important psychosocial components. Furthermore, a significant portion of what might be termed

"primary mental health care" is in reality provided in general health care

settings and in schools, day care centers, juvenile detention facilities, and othcr sites by personnel not specifically trained as mental health

professionals. These facts must be better recognized in the organition

and .financing of services, in the training of health professionals, and in

arrangements to ptovide expert mental health support and consultation to parents, general health care providers, teachers, day care workers, social workers, correctional offiders, and others who deal with children and their

families daily. The time is ripe for new arid systematic efforts to organize and finance primary careespecially for children and pregnant womenin ways which will encourage adequate attention to psychological, social, and

behavioral components of care and which encourage referral, consultation, and ease of communication between mental health professionals and primary care providers, and agencies, institutions, and professionals who

deal with children, pregnant women, and parents in trouble.

Categorical Services

In the main, primary health services for Mothers and children are provided most effectively in settings that offer a comprehensive array of
needed services. But there is persuasive evidence that some services are

well provided in settings that are not organized to provide comprehensive

care. For example, the Panel recommends that categorical funding for

family planning services be expanded to ensure that these services

continue to be made available in a variety of settings, and that all persons

who wish to make use of family planning services will have access to them.

The potential effectiveness of providing preventive dental services to

school-age children through categorical prograins has been grossly

neglected. Certain basic preyentive dental services are so critical to

improving the dental health of the Nation that they must be available to

all children and in various sites such as public schools, which s. tnplify

access and provide substantial economies of scale.

Mass Screening

Screening is useful (a) when performed in the context of individual

assessments and continuing care, (b) as a means of detecting a limited

number of conditions characterized by simplicity of detection and

followup, (c) as a way of linking children to an ongoing source of care,

and (d) as a check on the adequacy of care that children are receiving.

Developmental assessment is a key component of the health assessment of

every chili' but developmental assessment of young .children is not

properly forrned as part of a mass screening program, and should be

carried out only in the context of a more comprehensive health or

educational assessment. . Hospital eare

The operating and staffing policies, environment and design of space,

and philosophy of care of all hospitals offering pediatric and obstetrical

care should reflect the developmental and psychosocial needs of children

and faniilies in health, care settings. AU hospitals with emergency rooms

that treat children should ensure the availability of special pediatric

equipment and of medical and nursing staff knowledgeable in the care of

critically ill or injured children.

Regionalization

The Panel urges increased support for the regionalization of.selected

health services for children, newborns, and pregnant women, including

further development of regionaliz ed perinatal care networks; genetic

services; networks to improve care for serious illness and accidents;

backup and referral services for diagnosis and treatment 7f children withchronic illness, handicaps, or complicated psychosocial problems; and

enlarged public and private support of children's hospitals in their role as

regional resource :-enters and providers of specialized- care.

Chapter 8: Organizing Services for Special Populations

Four populations of children present special challengesto the effective

organi7ntion of services: adolescents, chronically impaired children,

12
children in foster care or other out-of-home placements, and children with

serious access problems as a result of linguistic, cultural, or geographic

separation from the mainstream of society. The health care needs of adolescents require increased attention in

existing health services systems, and efforts must be made to develop and

refine innovative models for organizing services to meet special health needs arising during this important period in the life cycle. Outreach

systems should be targeted to the settings where adolescents spend most of

their time; counseling should be a major component of adolescent health

care; sensitivity to issues of privacy and confidentiality must be reflected

in the design of services for this population; and financial barriers to care must be significantly reduced or eliminated. Certain basic., principles should govern the provision of all health

services for chronically impaired childrena group including the chroni- cally ill, physically handicapped, mentally retarded, emotionally disturbed

and multiply handicapped. Routine care should be provided in the home or as near to normal settings as possible; hospitals should design systems

that maximize use of nearby homelike settings, inclUding hospice care where necessary; primary care needs including mental health, dental care and support services for children and families should not be overlooked; and the hidden costs of care for chronically impaired children should be

taken into account in private and 'public financing of care. Clearer guidelines and specifications are needed in a number of public programs directed at these children. The efforts of maternal and child health

authorities in this regard should complement school-based efforts under P.L. 94-142, the Education for All Handicapped Children Act. Juveniles in confinement and in foster care are often overlooked by the health care system. Detention and correctional facilities have .an obligation to meet the health and mental health needs of juvenile offenders, and offenders should not be placed in facilities which lack services to meet their needs. The Panel also recommends that reqUired care plans for children in foster care include thorough periodic assessments, and

statements of the children's health needs, the health services being

provided, and the agencies or individuals responsible for providing such

services. a Migrants and farm workers often have inadequate access to publicly

financed health ind social service programs, which typically depend on

stable residency as a criterion for eligibility. The Migrant Student Record Transfer System, a computerized system enabling education authorities to

track migrant children from school to school, should be used to link migrant health service programs so that selected health information can move with.the child as families change location. In addition, State health plans should contain explicit provisions for meeting migrant health care needs.

Native American children also have special health care needs. Increased numbers of NativC Americans should be helped to enter the health

professions; more team care should be available; alcohol abuse and other behavioral problems should be effectively addressed; water and sanitation

services should be expanded; and primary care for urban Indians should

be improved. . 13
While refugees, "entrants," and illegal immigrants all share common

problems in obtaining health services, they are treated quite differently by

law and public policy. For refugee children the main problem is the

discontinuity which is built in by the 3-year eligibility Latit for benefits

under the Refugee Act of 1980. No distinction should be made between

refugees and "entrants" in determining eligibility for health care for

children and pregnant women. In areas where illegal immigrants represent

a significant component of medical indigents, means should be sought by

the Congress, the Department of Health and Human Services (DHHS)

and the States to provide fiscal relief to hospitals and primary care

providefs requiring such assistance.

Chapter 9: Financing Health Services fir

The way in which health services are financed is the single most

important determinant of how the health care system operates, what

services are available, which professionals provide those services, and who

will receive them. Current public and private third-party payment systems

provide incentives that result in an allocation of physician time,

distribution of physicians by speciality and location, and a manner of

providing health services that collectively are unresponsive to a significant

part of patient needs, especially those of children and pregnant women,

and that, unnecessarily drive up health care costs. Further, current

financing arrangements leave millions of Americans with no public or

private health insurance protection whatsoever, and many millions more

with grossly inadequate coverage. Purchasers of health insurance, public and private third-party payers,

and health care providers should take steps to modify and create

alternatives to prevailing methods of reimbursing health professionals and

institutions, including: Revision of paymetit schedules and methods to reflect the value of

counseling and other. time-intensive aspects of primary care and to

decrease inappropriate incentives for performing technical procedures.

More widespread use of alternatives to fee-for-service payment

methods.

Methods of reimbursement that offer equal incentives for training

health professionals in ambulatory care and inpatient settings.

Third-party payers and purchasers of health insurance need better

guidance on which services are in fact needed, who is qualified to provide

them and under what circumstances. The Board on Health Services

Standards recommended in chapter 5 is designed to provide such

guidance, and also to provide information regarding the likely effects of

third-party payment policies and practices on the availability of needed

services, professional personnel, facilities, and other components of the

health care system.

Private Health Ins urance

14

The potential of private health insurance plans for advancing maternal

9

ofto
and child health remains to be fulfilled. Toward that end. the Panel

recommends that State insurance commissioners review private insurance policies approved for marketing in their States and grant certification to

those that meet the health needs of children and pregnant women. In determining which policies merit certification, the States should use

criteria advanced by the proposed Board on Health Services Standards.

Medicaid

The Medicaid program has removed economic barriers to needed care

for many poor families. However, the adequacy of the program varies greatly among States, and in soLle instances, restrictive State policies

result in tremendous economic hardships and barriers to needed care for millions of families. For example, in 19 States, women who are pregnant for the first time do not qualify for prenatal benefits. Only about twothirds of all poor children are eligible for Medicaid; and an estimated 7 million children who meet Federal criteria of poverty cannot receive any Medicaid benefits at all. This is because many States do not allow children of two-parent families to participate in Medicaid, because income

standards for eligibility are low in some States, and because many who are eligible during part of the year lose eligibilty when family circumstances change. Many current problems with the program could be ameliorated without changing its basic structure as a Federal-State program focused on the poor. The most important improvements are .incorporated in several versions of the Child Health Assurance Program (CHAP) pending before Congress; these improvements should be promptly enacted. Specifically, the Panel recommends immediate action to establish a uniform national

income and resources standard and the extension of eligiblity to all children and pregnant women who meet that test, regardless of family

status or other conditions; to require coverage of a. uniform national package of services; to include all qualified providers; and to provide Federal incentives to the States to expand access to services and

encourage continuity of care.

National. Health Financing Programs

Even if the improvements we recommend are made in private insurance and Medicaid, some people will remain uncovered by any form of health

insurance, public or private, and many parents will still be forced to

choose between health care for their children and the purchase of other necessities.

It is the Panel's conviction that the health care needs of children and

pregnant women will be best served over the long run by a national health

financing program that ensures universal entitlement to health care. If such a plan cannot be put in place relatively soon, the Panel urges enactment of national health insurance for pregnant women and children

to 18. If it proves: necessary to phase-in eligibility even for this population, the Panel recommends starting with a program covering all pregnant women and children through age 5.

15
Grant Programs

The Panel supports the use of expanded grant programs to:

Encourage the development of resources in geographic areas

where the personnel, facilities, or delivery. mechanisms to provide

health care services are unavailable, and to finance demonstrations of new and better ways to deliver such services.

Pay for services that are more appropriately financed through

grant programs Lhan through third-party payments, and for those

where more information is still needed regarding the most

effective methods of payment. Pay for comprehensive services for :+ersons such as handicapped

children who have health care needs best met through special

systems or programs. Pay for health services for those persons lacking other sources of

payment, such as migrant workers, poor individuals not eligible

for Medicaid, and illegal immigrants.

Section IVGovernmental Relationships

The Panel concluded that the interrelationship of local, State, and

Federal Government, in the area of maternal and child health needs

reordering and simplification. Suggested changes pertain not only to

agencies that provide or support services directly, but also to those that

perform broader functions such as planning, monitoring, and advocacy.

Chapter 10: Structuring the System

The major health and health care objectives the Panel has identified can

be attained without creating major new public programs. But it is essential

to enhance the complementarity of existing programs, clarify responsibilities for those making policy and administering programs, and achieve

improved coordination and program management.

The Panel believes that the current disarray of programs and policies is

sufficient to merit a major modification in the Nation's policies and

programs for improving the health of mothers and childrenequal in

significance to the creation of the Children's Bureau in 1912 or the passage

of the Title V legislation in 1935. The agenda this time must be to

simplify program oversight and management while ensuring the achievement of specific, socially agreed-upon objectives. We propose that various

steps be taken to establish more coherent State and Federal administrative

structures, to redefine the appropriate relationship between 'State and

Federal authorities responsible for relevant programs, and to improve

local service coordination.

Every State should work toward placing authority over all relevant

funding streams in an appropriate division of the State health unit, and a

strong unification of effort should be promoted around all aspects of care

for children and pregnant women, including handicapped children.

While it is difficult to increase both State autonomy and Federal

accountability simultaneously in working toward national objectives,

16
several steps can be taken that will serve both purposes. These include Federal a=ountability mechanisms that stress the Federal role in

establishing broad performance objectives and standards and the State

role in selecting methods for attainment of these; joint applications and

reporting forms for all Federal programs related to the health of children

and pregnant women; a new set of coordination criteria to be met by all new or continuing legislation and program regulations; and interagency

agreements to identify areas of responsibility, define specific steps to be

taken, and assign realistic time frames for the attainment of goals. Title V continues to be an essential element for providing health care

services and for increasing the coordination of all State and Faleral programs relevant to the health of children and pregnant women...,,, We

recommend that Title V be revised and expanded, according! to', the

specifications detailed in volume II of the report, to provide thvieclessary

leadership and policy focus. t;7` It is especially at the local level that the efi arts of service prodders must be simplified and unified in. order to provide effective services. At 'least

two types of local initiative have proven successful: the establishment of a single point of service administration and budget control, and the development of improved methods of case management and case

advocacy. Each locality should designate a lead agency or publicly

appointed body to assess whether.: the existing network of private and

public health care arrangements is sufficient to meet the health care needs of local children and pregnant women, and to recommend changes as needed.

We also urge Federal, State, and local authorities to take a number of steps to better harness existing policy functions applying to all public health programs. These ...functions include planning, quality assurance, development of information systems, research and demonstrations, technical assistance-consultation, and advocacy.

Chapter 11: Federal Administrative Arrangements

The new national commitment to protect and promote the health of mothers and children which this report adirocates can be best advanced at the Federal level through the creation of a Maternal and Child Health Administration (MCHA) within the Public Health Service, to be made up of the existing Office of Maternal and Child Health, the Adolescent Health and Pregnancy Prevention Program authorized by P.L. 95-626, family planning services supported by Title X of the Public Health

Services Act, and possibly other programs at some future time. Maternal and Child Health Administration functions should include (a) operation of these programs; (b) authorit.;! ;41 review and comment on major policy issuances, including propcoeti budgets and legislation, developed by other agencies within DHHS conduct activities directly

related to maternal and child health with a view toward achieving better coordination of programs; (c) assistance to the States on maternal and

child health-related topics to help ensure that all mothers and children within their jurisdictions have access to needed services; (d) responsibility

for setting national standards by which to assess the adequacy of the

17

0 ir)
States' progress in ensuring the availability of the minimum set of basic

essential services; (e) coordinating the maternal and child health programs

of DHHS with related programs in other departments, such as the WIC

program of the Department of Agriculture, and the Education for All

Handicapped Children activities of the Department of Education; and (f)

research and advocacy. The primary value of the MCHA, in the Panel's

view, is that it would be an organizational entity of sufficient stature and

prestige to mobilize and coordinate programs and sources of funds in

many separate agencies in the service of improved maternal and child

health.

The Panel decided against recommending that the EPSDT program be

moved from the Health Care Financing Administration (HCFA) into the

new MCHA. We concluded that its removal from the rest of Medicaid

would create delays and disruptions in providing services. More importantly, its relationship to other maternal and_ child health programs

represents a small part of a much larger issuethe relationship of all

Public Health Service (PHS) programs to. all programs administered by

HCFA. A number of steps should be taken to link the service orientation

of PHS with the financing and management capacity of HCFA. The

establishment of the proposed Board on Health Services Standards could

be expected to supplement HCFA's existing expertise in management and

cost-containment and thus enable it to perform a broader mission

including health promotion and disease prevention. We recommend that

the Secretary of DHHS give urgent consideration to other possible steps in

this direction, such as making both PHS and HCFA responsible to a new

Under Secretary for Health. The Panel also proposes the creation of a National Commission on

Maternal and Child Health, appointed by the Secretary of DHHS to

report every 3 years on the health status and unmet service needs of

mothers and children; to recommend policy changes in Federal maternal

and child health programs, especially to improve their effectiveness and to

enhance coordination among programs; and to serve as an advocate,

particularly in Congress, for the health needs of mothers and children.

We also recommend joint oversight hearings by the appropriate

committees of House and Senate to increase the coordination of maternal

and child health programs that fall within the responsibilities of different

committees.

Section V--- Manpower and Research

Many of the Panel's recommendations suggest new roles and relationships among the health professionals who provide care to children and

pregnant women. and underscore the irnportance of continued and

expanded research.

Chapter 12: Health Professionals

Many of the views and recommendations presented in this report

contain major policy implications regarding the training and deployment

of professionals in maternal and child health. These include:

The changing profile of primary care needed by mothers and

children, with its emphasis on health promotion and disease

18

411.0: ILA
pieventioa activities, requires new components in the training of all priasary care providers. Meeting the health needs of pregnant women, children, and

adolescents will increasingly require a team approach to the delivery of primary care. The anticipated increase in the overall supply of primary health

care providers in the coming decade makes possible, but does not by itself ensure, better access to health care for those most in need. Improved distribution of services will depend, among other things, on alterations in the deployment of National Health Service Corps personnel and on creative use of providers with different levels of

training and expertise. Training of maternal and child health personnel involved in

program administration and policymaking at the Federal, State, or

local level must be modified to equip such professionals with the broad range of skills required for management roles in complex, interrelated service systems and to bridge the worlds of maternal and child health, obstetrics, and pediatrics.

Clisipmer 13: Research

The Panel emphasizes the importance of research directed toward

increasing understanding of the biomedical, behavioral, and environmental determinants of health and disease, and toward the improvement of __our health delivery system. A wide array of scientific disciplines, pursued at both the fundamental and the applied levels, must be employed

biomedical, behavioral, and social research, the population-based health

sciences, health services research, and related disciplines. The Panel vigorously supports the pluralism of research orientations and agencies currently supported by the Federal Governinent, but recognizes such diversity of effort requires broad-scale research planning

and coordination. We recommend that the Assistant Secretary for Health

undertake periodic and careful review of the activities of Ftderal agencies supporting health research, and of the relationship of current research

priorities to the evolving needs of moth=s and children, to minimize the

risk of significant gaps developing in the total research effort. We call attention to several research domain' s of special importance: epidemiology, prevention, social and behavioral aspects of health, health

policy, evaluation research, and research on environmental risks to health. We also recommend strongly that support for fundamental research in the health sciences be sustained and increased as opportunities emerge and

resources allow, and that special efforts be made to ensure that support for new or neglected areas of research not be made at the expense of

fundamental research.

To support many of the research needs we identify and to improve the content, organization, and financing of health services, a more adequate pool of statistical and survey data is needed on a great variety of maternal and child health issues. We stress simultaneously that massive amounts of data already in hand are inadequately analyzed and reported. Because a well trained, steady supply of researchers is a cornerstone of any national strategy to prevent disease and promote health, we view the

19
. It trend toward erosion of training support with great concern. Also.

to further stimulate research on the health issues and interven-

... 'th arc particularly important in primary care and to maternal

z.nd child health, the Panel recommends that research training opportunities be increased in ambulatory primary care settings and other settings

oriented to health promotion and disease prevention.

PLAN FOR ACTION

The Panel views the spectacular improvements in child health achieved

by this nation in the past half century as providing a firm foundation on

-.which to build for the future. We have identified the areas in which major

problems persist and further improvements afire urgently needed.

To clarify the interrelationship among the many recommendations we

make throughout the report, we propose three sets of goals.

(1) The first set of goals is directed at ensuring that all needed health

and health-related services are available and accessible to all

infants, children, adolescents, and pregnant women: First, to ensure universal access to three sets of minimum basic

services: prenatal, delivery, and postnatal care; comprehensive care for children through age 5; and family planning services. Second, to bring about the more effective operation of governmental activities aimed at improving maternal and

child health.

Third, to improve the organization of health services to reach

those population groups with special needs or at special risk,

including adolescents, chronically impaired children, children

in institutions and foster care, and children in the families of

migrant and farm workers, Native Americans, refugees, and

illegal immigrants. Fourth, to ensure that a family's economic status shall not be a bar to the receipt of needed health services or determine the

nature and source of such services, and that the use of such

services shall never reduce a family to penury. Fifth, to ensure that every child from birth to age 18 and every

pregnant woman has access to a source of continuing primary

care.

Siiith, to ensure that every family. child, and pregnant woman has access to all services identified as "needed," not merely

those basic minimal services which are part of our first goal.

This includes genetic, dental, and mental health services and

services to respond to health problems with major social and

behavioral components. (2) The second set of goals we propose addresses the influences on

maternal and child health which lie beyond the reach of personal

health services:

First, to encourage all efforts aimed at reducing accidents and

risks in the physical environment, and to bring about greater recognition of the particular vulnerability or -children and

pregnant women to environmental risks.

20
Second, to promote greater understanding and .stkiceptance

the critical role of nutrition by private industry, goveinmen , the media, the schools, and community groups as well as by

the health system. Third,,to enlist the schools, the media, industry, and voluntary

'associations, as well as the health system, in far more vigorous efforts to help individuals adopt and sustain behaviors that enhance health and well being. (3) The third set of goals we propose is directed at building the knowledge base necessary to further enhance maternal and child

health:

First, to encourage both the public and private sector to pursue a wide range of research spanning not only the biomedical and behavioral sciences, but also the population- based sciences and health service research.

Second, to recognize that fundamental research remains the

cornerstone of many past and future advances in health. Third, to ensure that an adequate portion of research support is directed to the special health problems of mothers and

° children.

It is clear that progress toward achieving these goals will require

integrated and coherent action. We recognize the difficulties involved in

achi such action, especially if the necessary steps involve any

fundamen change. With an eye to constraints on both available public

funds and advocacy energies, we suggest that many changes can be made

incrementally without dirniTliching their effectiveness, as long as there is a clear vision of long-term goals. We urge policymakers and advocates, in

adopting such an approach, not to lose sight of the relationships among

the parts. Progress toward these goals will also require considerable attention to detail. For this reason, we devote the second volume of our report to

spelling out the implications of our recommendations for immediate

action to improve five Federal programs with a major impact on child health: Medicaid and EPSDT, the WIC Supplemental Food Program, Title V (Maternal and Child Health and Crippled Children's Programs) of

the Social Security Act, the Education for All Handicapped Children Act (P.L. 94-142), and Community Mental Health Centers and Service Systems. In volume HI the Panel also presents a compendium of background data on various aspects of maternal and child health, and in volume IV a series of relevant background papers. Both are intended to provide additional information to assist policymakers and the public to

arrive at informed judgments in their efforts to improve child health.

giods

2 C

21
SECTION I

INTRODUCTION

CHAPTER 1

MAJOR CONCERNS

The Select Panel began its work by collecting information from

hearings, background papers, interviews, site visits, and expert consultations in an effort to identify and better define major policy issues in maternal and child health (1). In this process, we discovered a substantiiil convergence among diverse groups and individuals throughout the

country, including parents, health care professionals, researchers and

policymakers, on five overriding problems or concerns. All can be simply

stated, although their implications for new policy directions are not always as simple to analyze: All focus on domain' s of health policy where

considerable progress has ben made already and the Nation has much to

be prod of, but where much still =mains to be done: Many forms of disease prevention and health promotion are demonstrably effective, especially for children and pregnant women, but are still neither widely available nor widely used when

they are available. On the average, the health status of American children has

improved dramatically over the past two decades, but not all groups have shared equally in the progress. Sharp disparities persist in both health status and the use of health services according to family income, ethnic background, parental education, and geographic location. The profile of child health needs has changed significantly over

the course of this century, partly as a result of our success in

combating infectious disease. As a consequence, our definition, organization, and financing of child health care must be modified

to deal effectively with the psychological, social, and behavioral factors that are now major determinants of child health status. Whereas the family is and will remain a major influence on child

health and the determining factor in how child health services are used, the current health care system seldom recognizes or supports

this role. Nor does the system acknowledge or address the health

implications of the changing composition and circumstances of

the American family. The Nation's investment in publicly supported maternal and child

health programs has been accompanied over the past two decades by a serious splintering of purpose, governance, and oversight responsibility.

37
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but that techniques of known effectiveness still have not been applied widely enolagh. Data on inadequate availability and use of essential preventive care are to be found in a variety of recent surveys and reports

(5).

1Pirausaa Care

Prenatal care is clearly related to positive pregnancy outcome. Many of

the risks associated with low birth weight can be identified in a first prenatal visit, and steps can be taken to prevent or correct them. Conversely, late care or no care is associated with low birth weight, increased prematurity rates, increased stillbirths, and increased newborn mortality. A pregnant woman who receives no prenatal care is three times as likely as others to have a low-birth-weight baby (one weighing less than 2,500 grams, or about 5.5 pounds). In 1977, neonatal, post-neonatal, and

infant death rates were four times higher for babies born to women who

received no prenatal care than for those receiving at least some care (3, 6). Despite the effectiveness of timely prenatal care, fully one-quarter of all pregnant women receive none at all or only belated care. These

percentages are significantly higher among poor, black, adolescent, and unmarried women, those in rural areas, and those over 40the very

groups most likely to be at high risk from other causes. Via the provision of prenatal care, public policy can have a demonstra- ble effect on pregnancy outcomes among high-risk populations. In New York City, for (maniple, publicly supported Maternity and Infant Care

(MIC) projects provide prenatal care for 1 in every 12 births to city

residents- Throughout the 15 years the program has been in operation, perina.tal mortality rates have been consistently lower for MIC -patients

than for other patients living in districts where the clinics are located, and

also lower than avetage rates for New York City as a whole (7).

Imosnizations

Few would disagree that all American children should receive the basic health protection of immunizations. Yet as recently as 1976, one-third of all children under 10 were not properly protected against seven major childhood diseases -- measles, mumps, rubella, polio, diphtheria, pertussis, and tetanus. All seven diseases can be fully prevented by immunization; -

their occurrence can result in severe disability or, in some cases, death. Since 1977, as a sesult of the highly effective Childhood Immunization

Initiative carried out by the Public Health Service in collaboration with

local school districts,. State and local health departments, professional medical societies and interested lay groups, this percentage has been cut dramatically. By the time children enter elementary school, only 7 percent now lack polio, diphtheria-pertussis' -tetanus, or rubella vaccinations, and

fewer still lack measles or mumps vaccinations (8). The initiative demonstrates that Federal effort in close cooperation with State and local authorities from various service sectors can exert a strong and positive

influence. Although this campaign has yielded a satisfactory outcome in

the short term, it must continue so that new cohorts of children entering

27
school in the 1980's will be likewise protected. Recent epidemics of

measles and pertussis, and occasional recurrences of diphtheria and polio.

remind us that immunizations must be received by each successive generation. Well-organized efforts could improve present immunization

levels and rid the Nation altogether of certain infectious diseases.

including measles and rubella.

Nutritional Care

Both the course of pregnancy and the condition of the infant at birth

are affected by the mother's diet. Subsequent growth and development of

young children also depend on adequate and balanced nutrition.

Improper nutrition makes it more likely that exposure to infection will

result in disease, that resistance to disease will be weakened, and that

associated complications of disease will result. In spite of these generally acknowledged facts, a. sizable percentage of

all pregnant women exhibit nutritional deficiencies or imbalasices,

especially iron deficiency. Likewise, over 90 percent of all low-income

children are below the recommended dietary intakes for iron, and over 50

percent are lacking in one or more essential vitamins (9). Nutritional

problems are especially serious for teenage mothers, who must nourish

their own rapid development as well as that of the fetus.

Once again, preventive care programs exist that have shown measurable

positive results. The U.S. Department of Agriculture's (USDA) Supplemental Food Program for Women, Infants, and Children (WIC), for

example, has demonstrated a positive influence on weight gain during

pregnancy and on birth weight through nutrition counseling and food

supplements for low-income women. More is said about this and other

effective nutrition programs in chapter 4.

Early Childhood Screening for Vision and Hearing Defects

As many a& 20 percent of all children in the United States have

problems of visual acuity and another 5-7 percent have some form of eye

disease. About 10 percent of all _children have hearing deficits (10). Many

vision and hearing problems can be it! entifi.ed in infancy and in the

preschool years and some, if not identified and, treated at this age, can

have lasting detrimental effectst. One _example is cataracts, whose

degenerative effects are far more severe if not treated early. Another is

strabismus (misaligned eyes), which if uncorrected usually results in longterm visual deficits, loss of binocularity, Or both_ A third example is

congenital or infection-related deafness, which if untreated in the young

child may inhibit cognitive and language development- Screening and treatment for vision and hearing deficits are well

developed aspects of primal), medical care, yet a surprisingly 'high number

of defects go undetected or untreated during-the preschool and school

years, especially among low-income children. Where screening programs

have been well implemented by idcal public health and school authorities,

results have often been positive. But national programs and policies that

Assist in more thorough screening and followup for low-income

28

it;
children, _including the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program wider Medicaid, still have far to go before

reaching all those who need care (11).

Preventive Dental Care

Dental caries and periodo9iial disease are the two most common ora:

diseases of children. Both Ore largely preventable. Dental caries alone

affect 95 percent of the population. By age 11, tke average American child

has three permanent teeth damaged by decay, and among low-income

children, the number is significantly higher (12). The most effective method to prevent decay is fluoridation of water

supplies or topical fluoride treatment. Yet approximately one-half of all

American children live in areas without fluoridated water. Programs in

school-based screening and education for oral hygiene have been effective

in some areas over the years, but recently have not grown in number. Likewise, the EPSDT program has increased the use of early dental care

by Medicaid-eligible children, but only about 20 percent of the target population has been screened, and only 25 percent of those screened have

actually been referred for treatment (13).

Accident Prevention

'Accidents are the leading cause of death and disability among children

and adolescents. Motor vehicle accidents alone account for one-fifth of all

child deaths each year, and 20 percent of all persons who die in motor

%chides each year are teenagers. Other accidental deaths and injuries most commonly result from drownings and burns, falls, misuse of household

products, or various forms of substance abuse. Certain available forms of prevention are very effective in combating

accidents. Especially useful are those that do not require voluntary

personal behavior, but instead restructure Iiinsafe aspects of the child's

environment. As an example, it is estimated that one-third of all passenger

fatalities could be avoided if all cars on the highway were equipped with

- automatic restraints (14). Child-resistant containers have resulted in a

sharp decline in the accidental ingestion of prescription drugs by children_

Other examples of successful techniques for environmental risk reduction

are numerous, but few of them nave been instituted or encouraged widely

as a matter of public policy (15).

Family Planning

The best way to prevent many childhood problems is to make sure

children are wanted. Studies have shown that parents who plan and space

their children have fewer low-birth-weight babies. as do those who wait to

have children until they are beyond their. teens. Private, public, and

religious group-sponsored family planning programs have made impressive progress over the past decade in reducing unintended pregnancies,

but an estimated 3 million poor and near-poor women, and approximately

2 million sexually active teenagers in all income groups, still are not

29
a receiving needed-help. Partly as a result, unwanted pregnancy continues to

exact a heavy toll in health and emotional costs from individuals and

society. In fact, estithates indicate that each year about 300,000 unwanted

births occur to married couples; 1 million teenagers become pregnant,

many unintentionally; and 450,000 out-of-wedlock births result, half of

them to teenagers (16). Although more examples could be cited, there is no reason to belabor

the point_ Numerous children and pregnant women still do not receive or

practice even those forms of prevention and health promotion we know to

be highly effective. It is easier to document this problem, however, than to

make realistic proposals for solving it. The barriers to appropriate use are

both varied and numerous, including financial disincentives to parents and health care providers, disincentives in the organization of health care

services, and attitudinal factors. Succeeding sections of this report address

the issue of how public policies should be devised or modified to provide

' stronger incentives for an emphatis on prevention and health promotion.

Costs and Benefits

In an era of high inflation and tight fiscal constraints, all public

programs have come under sharp scrutiny as taxpayers demand, and policymakers seek to provide, evidence that programs are providing

benefits commensurate with their costs. Therefore, it was not surprising

that in the course of collecting information on current Maternal and child

health programs and policies, the Panel was urged repeatedly by

policymakers and child health advocates, as well as skeptics of all stripes,

produce detailed and compelling cost-benefit or cost-effectiveness,data.

We recognize the political realities underlying this advice, and while we

would caution that there are limitations to the usefulness of cost-benefit

analyses in the health field, there is ample evidence that services for

pregnant women and children constitute an exceedingly cost-effective

forth of social investment.

Public health professionals have defined three 'evels of prevention. Primary-ii-evention attempts to avoid the developmez:. of a disease by

techniques of protection (imraunization or environmental control) or

promotion (education or 'nutrition). Secondary prevention is equivalent to

early diagnosis and piompt treatment (screening and followup). Tertiary

prevention is aimed at reducing the effects of irreversible illness to limit

disability and promote rehabilitation (insulin therapy for diabetics, training programs for the mentally retarded). Recent cost-effectiveness

data on services of all three types suggest that a substantially greater emphasis on preventive health and mental health interventions is

warranted as a form of social investment.

Some of the clearest examples are from the realm of preventive medical

and dental care:

A study by the Centers for Disease Control showed that $180

million spent on a measles vaccination program between 1966 and

1974 saved $13 billion in medical care and long-term care by

reducing deafness, retardation, and other problems (17).

30 "9
A 1977 General Accounting Office report to the Congress found

the cost of genetic screening at birth plus early treatment for seven

common disorders was less than one-eighth the projected cost of caring for an impaired child over a lifetime, even without taking

into account the extent to which inflation would drive up longterm costs (18). Another study examined the costs and benefits of four types of preventive care provided in some early childhood demonstration programs in Texasvision screening, hearing screening, preventive dental care, and identification of congenital malformations. For each State dollar spent, the study found, more than $8 was

saved in long-term care costs and in income loss avoided (19). The Surgeon General's Report on Health Promotion and Disease Prevention points out that dental caries cost $2 billion per year to

treat_ A recent analysis reported by the Centers for Disease Control shows that for every additional $100,000 spent on water fluoridation, 500,000 cavities are prevented. If each cavity costs $10 tos fill, this suggests a cost-benefit ratio of 1-to-50 in favor of

fluoridation (20). Such examples cannot even begin to convey the dramatic qualitative difference preventive care can make in the' lives of many children whose prospects, even two decades ago, were bleak indeed. A case in point was provided by a June 2, 1980 article in the Miami Herald contrasting the

excellent prognosis for an infant whose hypothyroidism was diagnosed in Florida's new screening program for inborn errors of metabolism with the

situation of a 40-year-old woman whose hypothyroidism was detected too

late to treat. The baby is being successfully treated at home with pills costing pennies apiece; however, the woman has an intelligence quotient (IQ) of less than 35 and is permanently institutionalized at an annual care

cost of $24,000. Many procedures identified with preventive medical care are an

important component of preventive mental health as well. Substantial gains have been made in preventive mental health in recent years through genetic counseling, amniocentesis, improved prenatal care and delivery, metabolic screening and followup of infants, inimunization, and measures

to reduce childhood accidents and poisonings. All of these measures may

reduce central nervous system damage, with major long-term costs savings

to families and to society.

Preventive Education and Counseling Programs

Whereas evidence of cost-effectiveness is relatively easy to find

regarding preventive medical care, it has proven harder until recently to produce such evidence in the broad realm of preventive education or counseling programs designed to enhance parenting skills and the mental health and competency of the young child. This is largely because cost- effectiveness analysis based on the long-term outcomes,of such programs poses a major methodological challenge. But recent analyses suggest that attendance at preschools, and efforts in parent education, can themselves

31
be a form of prevention, especially for children at risk of health problems,

child abuse, or school failure. One cost-benefit study on a limited cohort of children who attended a

compensatory preschool in Ypsilanti, Mich., and were followed thereafter

into high school, identified two major health-related benefits. A goodly

portion of total costs of the preschool project were offset by later savings

because, as compared to a control group, participant children required less

special education and no institutional care when they reached elementary

and secondary school. Similar findings have now been reported for a

much wider array of compensatory preschool programs, and are summarized in a recent GAO report and in various scientific journals (21).

A number of other promising preventive approaches aimed at enhancing child development involve the interaction of parents and skilled

counselors in the home. Among such programs is Home Start, a variation

of the Head Start program which includes education, health, nutrition,

and social and psychological services. In Home Start, a home visitor

serves as a role model and support for the parents, demonstrating how to

help the child develop and learn. Evaluation of the program has shown

that, at least in the short term, Home Start children gain significantly over

control children on measures of development, and significant positive

changes we produced in the way parents interact with their preschoolers.

The home visitor model has also proven in demonstration programs to be

a cost-effective method of preventing child abuse (22). Home visitors need

not be highly paid professionals, but rather part-time or full-time

community workers_ The Panel is convinced, on the basis of the testimony, research, and

background materials it has reviewed, that preventive care should be

broadly construed to encompass environmental, medical, and psychosocial interventions of many different kinds during pregnancy and the first

years of life,_ Nearly all forms of prevention are inexpensive, both

absolutely and relative to the costs of subsequent care for problems that

arise in their absence. To withhold such preventive care in the name of

cost containment is penny-wise and pound-foolish at best, leaving aside

the question of whether it is morally defensible_

Some Caveats

Although the cost-effectiveness of much preventive care for young

children and pregnant women is clear, the Panel would caution that some

major limitations do exist.. in the usefulness of the broad cost-benefit

framework and point of view for policy determination, both as a general

paradigm and when applied to children's services. Our reservations in

large measure echo those presented in a recent report of the Office of

TF thnology Assessment (23), but we would argue that special caution is

needed in applying cost-benefit analysis to children's programs and

policies for several reasons: To measure the success of early interventions only in terms of

long-term outcomes places a difficult burden of proof on

programs and policies for children, and one which health care

32
policy for no other group must sustain. Effects must be very strong

to predominate over the impact of years of subsequent life

experience. We believe that, as with the elderly or any other age group, it also should toe important to show that care improves the quality of children's lives in the short-term. This humanitarian

goal is as important as cost-containment or maximum return on

social investment.

Cost-benefit analysis always involves assumptions about whether

the status quo is acceptable and whether dollar values can be placed on human life. For example, providing prenatal care for

the many women who currently do not receive it in the United States would cost somewhat more than we are now spending but werald probably result in a significant reduction in infant mortality, birth defects, and developmental disabilities. How can one base a decision about this form of social investment on the

dollar value or opportunity cost of infant deaths and disabilities?

'.The case for increased preventive care cannot be argued solely on grounds c.-,f cost containment because not all forms of effective prevention will cut costs. Some may, and in fact should, increase

them somewhat. Vision screening, for example, is only effective if

those identified as needing glasses receive them. In simple dollar

terms, it is undeniably cheaper to have a generation of children in which 15 percent cannot see well than to rectify this problem, even

if national productivity suffers as a result. Again, it is difficult to design policies or calculate dollar tradeoffs without some prior statement of fundamental social values.

Choices about which investments to make with limited resources

always involvc a prior judgment about the scope of permissible

cost comparisons. If current national child health expenditure is perceived as the only frame of reference for analysis of alternative

investments, some very difficult choices are presented (e.g., is it good to invest in prevention of developmental disabilities even if

this means reducing expenditure on some forms of needed acute care?). On the other hand, if total domestic health policy

expenditure or total national expenditure is the frame of reference, cost comparisons and issues of opportunity cost broaden consider- ably (e.g., is it more cast beneficial to invest in early prevention

than in various forms of high-technology intensive care? How

should investment in preventive health care for mothers and

children be compared with various types of national defense expenditure?). We believe that current concerns about cost containment have driven many to consider cost tradeoffs only in

the narrowest framework, and would submit that a broader range of cost comparisons is more appropriate. In a mixed private and public health care system such as ours, cost-benefit comparisons involving public expenditure for the Nation as a whole may lead to different conclusions from those

focused on individual families. For example, almost any kind of sophisticated, high-technology medical care may appear exceed33
ingly costly to finance with tax dollars for all who may need it, but

well worth the cost to an individual family whose child may die or

suffer permanent impairment without such care.

We state such reservations not because they are new, but because they

remind us of the false sense of precision that accompanies many costbenefit comparisons. We would contrast the fuzziness and limited utility

of broad cost-benefit statements with the undeniable usefulness of more

narrow analyses comparing the relative cost-effectiveness of two or more

specific methods for achieving a desired health outcome. The essence of

good national preventive care policy is to be clear and limited in what we

promise, to select specific objectives and techniques for achieving them,

and to be vigorous in evaluating effectiveness so that money is not wasted.

Adolescents

Most of the discussion to this point has focused on infants, young

children, and pregnant women, because many of the best examples of

effective preventive care are to be found with these groups. The preventive

care needs of adolescents are equally great, however, and continue to

present a major challenge to the health care system and other servick.

systems Early adolescence is a period when many patterns of health-related

behavior with major long-term consequences arc first established. It is also

a time when individuals experiment with substances and modes of

be savior, which, if adopted, can have major adverse consequences for a

lifetime. Statistics on contemporary adolescents suggest that better

preventive interventions are urgently needed for this group. Increases in

the rates of teenage pregnancy, sexually transmissible disease, suicide and

homicide, motor vehicle accidents, alcohol and drug abuse are especially

distressing. Increased rates of pregnancy among =married adolescents have been a

particular source of concern. These have resulted from earlier and more

frequent sexual experience and inadequate contraceptive practices. In the

period 1971-79, the proportion of girls 15-19 years old who had engaged

in premarital intercourse increased from 30 percent to 50 percent. More

than one-quarter of sexually active teenaged girls in 1979 had never used

contraceptives, and close to two-thirds of this group became pregnant.

The problem in this and other realms of adolescent care is that

policymakers have not really known how to address such problems

effectively. Preventive measures for adolescents have been less clear-cut

than for younger children, for at least the following reasons:

Few adolescent problems are narrowly medical, and most adolescents at risk are not best served by narrowly problem-focused

interventions or techniques involving only medical personnel.

Many adolescents do not seek out health care providers or

personnel in the health care system to help them, except when

acutely ill or injured. Many of the health "problems" of adolescents are in fact

symptoms, and preventive solutions are not necessarily best

focused on these symptoms alone (e.g., the availability of a job

34
training program_ may do more to reduce adolescent pregnancy in

a high -risk area diantrie existence of a special adolescent health

clinic). Health programs generally regarded as successful among adoles- cents are often unique to a particular community and difficult to

replicate. The controversy around age-of-consent for teenagers, combined with controversy between those advocating children's rights and

those advocating parents' rights, leads to ground where policy- makers and others fear to tread.

In some realms, such as sexual behavior, there persists a major political ambivalence about implementing even the least contro- versial preventive measures (better education about human

sexuality and more widely available family planning services). This ambivalence persists among policymakers even though

survey dam indicate most parents favor more open discussion of sexuality and other matters central to the healthy development of

teenagers(24). As a result, national health policy toward older children and adoles- cen:s has been a nonpolicy characterized by categorical programs

fashioned to address limited health problems. The topic of preventive care

for adolescents is raised in various chapters of this report, with the general view that the Nation still does not know how best to meet the preventive

care needs of this age group and needs more research, demonstrations and

analytic attention to__ the matter in the immediate future. The tremendous

importance of adolescent health care is not questioned.

Financial and Organizational Barriers

Despite a growing recognition of the importance of health promotion

and disease prevention, many financial and organizational barriers remain

that limit the provision of such services. Foremost is the fact that preventive services are generally not covered by either private or public

insurance. Insurance, by its very definition, is designed to spread widely

the risk of incurring costs due to illness or injury. The concept of preventive care does not even fall within such a traditional definition. In the absence of third-party payment, preventive care is often simply not providedeither because consumers cannot or will not pay for it, or because unreimbursed providers cannot or will not offer it Present

incentives drive many providers to offer the most expensive and least ---prevention-oriented-types-of-cam-whicIr are-particubulyinapprOpriate for children and pregnant women. The result is that only a tiny percentage of our total national health expenditures currently goes to some form of

health promotion and disease prevention, despite outlays of $245 billion in 1979 that are expected to total some $758 billion in another 10 years unless changes are made (25). Organizational barriers also limit the availability of preventive care. Physicians in solo practice or with only one partner often fmd it difficult

to take the time tc establish linkages with other service providers such as

35
schools, public health authorities, and social workers who can provide

valuable preventive services; some of which may not be directly defined as

"health care?" Few health care settings, no matter how organized or

staffed, have an outreach capacitywhich may be important for reaching

children and pregnant women most in need of preventive care.

There is a new receptivity to health protection and promotion among

many practicing health professionals and medical educators, but whether

this is translated into new practice patterns will depend in significant

measure on the creation of new financial and organizational structures.

New approaches to prevention and counseling ha. - e gained impetus from

the growing realization among physicians that exclusive focus on physical

medical concerns may not be the best way to spend a routine child health

visit. Indeed, the basic concept of child health supervision is in transition

(26). Because the health needs of young and dependent children involve

the family as well as the individual, effective preventive care for this age

group must be broadly construed to encompass not only the particular

intervention or procedure itself but also the necessary education and

social support for the family to ensure its effectiveness.

Effective prevention is often a matter of how services are organized, as

well as whether an effective technique is available. As one example, a

recent comparison of PKU screening efforts in the United States, the

United Kingdom, and Ireland concluded that, despite identical clinical

testing techniques in the three countries, diagnosis is more likely to be

missed in the United States, and treatment delayed, because of inadequate

coordination between in-hospital and out-of-hospital health care, and

inadequate followup of young infants in the community (27).

Preventive efforts can be greatly enhanced by a clear distribution of

responsibility among health care providers, the schools, social service

providers, public health authorities, environmental protection agencies,

and others. Many truly effective initiatives involve close collaboration

among these sectors. It is known, for instance, that among the most

positive results of recent social policy is the improvement of pregnancy

outcomes from community-based programs that include social welfare

and school-based as well as medical components (28). This type of joint

effort is greatly to be encouraged, although at present most communities

do not provide sufficient opportunities for it.

Limits of Prevention

Even as we urge modification of the health and social service systems to

enhance and expand health promotion and disease prevention services,

the Panel is mindful of the limits to what can be accomplished through

such an approach. Many of the factors that endanger healthsuch as

poverty, racism, unemployment, criminal violence, poor educationlie

beyond the reach of the health system and its preventive care measures,

even when broadly construed. Moreover, no matter how much we invest

in prevention activities, there will still be diseases and medical problems

requiring the best of curative medicine. The fact that a preventive technique is feasible does not always mean

that it is desirable to apply. For example, testing preschoolers for

36
developmental-lags and school-readiness may yield useful results in the hands of a skilled clinician, but is potentially dangerous if screening

outcomes arc used by public authorities to classify or track children. In

general, screening for so-called "high-prevalence/low severity" conditions

deserves scrutiny, especially if the as--ssment technique is insensitive or of dubious validity, or if effective followup does not seem likely. Likewise, even if a particular form of prevention is both feasible and

desirable, it may only be worth performing for certain subpopulations or

in certain geographic areas. Many forms of prevention can be rendered far more effective, especially in a time of scarce resources, if they are targeted

to those groups most apt to need them. Targeting is already reflected in

various Federal efforts to vaccinate, reduce infant mortality, and achieve other specific objectives. Such efforts would be further sharpened by

better prev&ition-oriented epidemiology in every State designed to tell policymakers in some detail where, for example, to place resources to

improve perinatal care or what measures, aimed at which subpopulations of children, might most reduce childhood accidents. Policy-relevant epidemiology of this sort remains rudimentary in most jurisdictions and

does not yet permit refined targeting strategies. Finally, it cannot be denied that many of the most important decisions

to be made regarding prevention are political, not medical, in nature. One

might argue quite persuasively that the most effective way to improve the health of the American people both dramatically and rapidly would be to prohibit the possession and use of tobacco products, alcohol, and

firearms. But no one is suggesting that health professionals can or ..-.-aould make such a decision. The tradeoffs between personal freedoms and

reduction of health risks, and the role of the Government in preserving an

appropriate balance between the two, remain difficult value questions that must be addressed in public policymaking about prevention of illness and

injury.

PERSISTING INEQUALITIES AMID OVERALL IMPROVEMENT

The past two decades have seen a remarkable improvement in health

status and access to good health' services by Americans of all ages, including children. Indicators of overall progress are numerous and

include the following: By 1979, the Nation's infant mortality rate had been cut to 13 per 1,000 live births, half of what it was in 1960. The Surgeon General believes it is realistic to reduce the rate to 9 per 1,000 live births by

1990.

Mortality rates for children 1-4 years old dropped from 109.1 per 100,000 population in 1960 to 68.8 in 1977, and during the same period death rates for children 5-14 years of age declined from

46.6 per 100,000 to 34.6. Disease- rates for a number of infectious diseases have been cut

sharply in a very short time. The incidence of measles dropped

from 38.2 cases per 100,000 population in 1975 to 27.1 reported

37
cases in -1978. Reported rubella cases declined from 11.8 per

100,000 to 6.8 during the same period. By 1975-1976, less than one-half of I percent of all children under

18 (0.4 percent) had never been to a doctor. Some 73.7 percent

had seen a doctor within the past year, and 88.4 percent of all

children under 6 had done so.

A child born in the United States today has a life expectancy of

more than 73 years, compared with a life expectancy at birth of

only 47 years in 1900. These improvements reflect advances in basic social conditions,

environmental health, and medical care. They also reflect the advent of

Medicaid and other Government programs, the gradual improvement of

organized primary care in poverty areas, and the growing supply of

primary heath care professionals. Above all, they demonStrate that health

status and appropriate use of services can be influenced via national

policies. In significant measure, present policies are beginning to work.

Moreover, advances for mothers and children are especially encouraging

in that they have not been a major component of increases in the Nation's

health bilL Care for children and pregnant women continues to be a

relatively modest investment, and one with major returns. Although such advances are encouraging, they do not merit selfcongratulation or a conclusion that child health should be downgraded in

priority over the coming decade. An equally powerful set of facts can be

marshaled to demonstrate that recent improvements have not benefited all

segments of the child population equally. Indeed, for some groups of

children and in some categories of problems, things have improved little

or are actually getting worse. It is precisely in those areas of greatest need,

and for those populations in greatest need, where health status indicators

arc most worrisome and services most conspicuously absent (29):

The infant mortality rate of black Americans has decreased over

the last decade, but in 1977 it was still 23.6 per 1,000 live births,

nearly double that of whites. Approximately one-third of all black children are estimated to

suffer some kind of nutritional deficit, compared with less than 15

percent of white children. Poverty and race are associated with

deficiencies in six of eight specific nutrients. In 1977, children under 6 years in 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. Of children 0-17 years old in the highest income families, 70 percent were

reported to be in excellent health, as compared to 41 percent in

the lowest income families. Number of hospital days per child

under 17 was almost four times as great for the lowest income

group as the highest, with average length of stay more than- twice

as long. Hospitalization rates for minorities were lower, however,

suggesting significant barriers to hospital access. In 1974, four times as many poor children under 18 reported

unmet medical needs as affluent children, with cost and difficulty

in getting to a doctor cited by the majority of the poor as the

reason for not seeking care.

38

fl.)
White

All other

irt ow is Black

15

14

13

12'

11

10

9

Low-birth-weight births

Infant deaths

0

1940

I 1950 1960

Year

1 I I

1970 1978

Infant deaths and low-birth-weight births per 100 live births,

accorang to race: United States 1940-78, selected years
The high cost of medical care for chronically ill or handicapped

children remains a problem for many families. Coverage underthe

Crippled Children's Services program varies from State to State, so that a seriously ill child may be covered in one and incur

catastrophic expenses in another. These and similar indicators serve to remind us of a persisting gap in health status and use of services between rich and poor, white and

minority, educated and noneducated, and also major differences between

regions, States, alla census tracts. The Panel believes that equality of access to services is a policy

objective of major significance, and that the persisting 'problem of the gap" in health status and. health service access must be more forcefully

addressed in the decade to come. Some progress has already been made.

Reduced differentials in infant mortality and physician visits are examples

of positive trends. There is good reason to believe that further adyiuices

are possible at very reasonable cost.

The Goal of Equal Access

The goal of equal access to health services has proven elusive in plum

because it has been difficult to define and quantify. Access can be measured by the degree of diffict.1 ty in obtaining care or by the number

and type of visits to a health care provider. But clearly equal access does

not mean equal use, nor should it necessarily be expected to achieve equal health status outcomes. In addition, it is only part of what is needed to

solve health problems. Housing, sanitation, nutrition, and other social and

economic determinants are undoubtedly far more important in the larger

scheme of thingi as pred*c toi-s of long-term health outcomes.

What most people mean when they describe the goal of equal access is

similar to what is meant in education by the goal of equal opportunity

the equal chance to benefit from interchange with relevant professionals,

adjusted in some way to account for level of need. Because low-income

children tend to get sick more often than other children, to postpone all

types of health care, and to go to hospital outpatient departments and

emergency rooms where they receive care which is typically episodic,

equal rates of physician visits between them and other children do not

necessarily signify equal access to services. Nor is quality of services

necessarily the same. One example of confusion surrounding these points can be found in the

widely differing interpretations given to trends in use among Medicaideligible and non-Medicaid-eligible children. In 1965, the poor had the

fewest physician visits, the near-poor the next fewest, and the affluent the

most. By 1975, this pattern had changed to become U-shaped: the Medicaid-eligible poor and the affluent had roughly comparable use rates,

and all other poor and near-poor children had less. Does this new pattern

signify that equality of access has been achieved for the Medicaid group?

Certainly, there has been encouraging movement in that direction, but the

answer is probably no, for some of _the reasons cited previously. In

addition, the new pattern suggests that the poor and near-poor who are

40
not eligible for Medicaidas well as the 20 percent or more of Medicaid-- children and women who move in or out of eligibility each yearare at special risk because of sharp discontinuities in access for them and their

families.

- Unequal Use

Patterns of use are determined by the underlying distribution of illness, difficulties of access, consumer incentives and ability to overcome these

problems, incentives to physicians to encourage care, and organizational that may or may not accommodate various types of service. factors are difficult to disentangle. Three central problemsnot

to mothers and children in their effects but of major importance to emcontinue to deserve special attention: (1) There is a strong correlation between high family income and two desirable patterns of carethe appropriate use of preventive care, and the timely use of routine acute care. Conversely, there

is a relationship between low income and heavy use of clinical procedures and referrals for specialized therapy. This pattern

reflects several disturbing facts: the barriers that keep_ lowincome persons from routine preventive and primary care, the absence of appropriate providers of such care for them and

resulting high use of hospitals, the disproportionate amount of

serious illness among the poor, and the financial incentives for

physicians and hospitals to refer Medicaid eligibles for various

forms of specialty care. The fact that low-income uoups do not receive inexpensive and cost-effective forms of preventive care is particularly

unfortunate because they have the most to gain from such

services. It is serious enough, for example, that in 1977 almost 10 percent of all pregnant women in New York City had no prenatal care, and another 12 percent had care that began in the

last trimester. However, in Central Harlem, where infant mortality rates are well above the city average, 30 percent of all pregnant women received inadequate care or no care ( 7). Once the poor do enter the system, their care tends to be more

expenzive than it should. On the average, hospital clinics, which

perform as much as 50 percent of the care for low-income central

city children., are more than twice as expensive as doctor's offices

(30). Medicaid foots much of the bill. and the rest either comes /7 from the pockets of the poor therr. :es or else, in the case of growing numbers of medical from State-and local tax

revenues. The result has been discontent on all sides.

Especially in die case of children and pregnant women, most of whose care should be routine, inexpensive, and predictable but is highly sensitive to factors of distance and price, the lesson

is that organizational structures and financial incentives still do not operate to generate appropriate patterns of-primary care. A more decentralized pattern' of primary care is required, one which is better insulated against the costs of the hospital sector

41
and better able to prow; le the necessary outreach to foster

appropriate early care_

(2) Many studies have shown that individuals with a regular source

of care are more likely than others to seek care, even when

adjustments are made for need and other factors. In fact, data

from a 1976 national survey suggest that the presence or absence

of a regular source of care has a greater effect on access to health

care than either poverty status or race_ It is also the single most important determinant of whether medically "appropriate"

utilization of services occurs. Those who have such a-source use

more preventive care. are less likely to overutilize, and are more

likely to express satisfaction with the care they receive (31).

Despite the many advantages inherent in- the continuity afforded

by such a source, more than 18 percent of all children from lowincome fanzines lack one, compared with less than 6 percent of

children from faMilies with an annual income of .$15,000 or

more. And among those who do have a regular source of care.

poor and minority children- are less likely to see a particular doctor regularly, and still less likely to have .n ongoing

relationship with a medical specialist Only 23 percent of poor

families use the same source for sick and well care.

The need to encourage patterns of afRiati with regular care

sources among poor and minority faz remains a major

objective for the coming decade. (3) .'-tbsolute numbers of primary care physicians have been increasing over the past 10 yearsfrom approxiinately 128,500 in 1967

to 141,000 in 1977, with further increases anticipated over the

coming decade._ The supply of primary care physicians has also

been increasing relatiire to the number of children and pregnant women..since fertility rates have declineci in the same period.

However, there still are not sufficient numbers of accessible

primary care physicians in areas defined by the Federal

Government as medically underserved. Attracting the necessary

number of qualified physicians to serve in such areas will require

the creation of provider arrangements, whether private or public,

which are lucrative enough, of high enough quality, and offer

sufficient professional satisfaction to be appealing to health

professionals as practice settings_ Although an appropriate ratio of primary care providers to

population cannot be precisely defined, the ratio most often

mentioned is 1 to every 2,000 persons. By that criterion, 28

million residents of rural and inner city areas live in underserved

.1: areas, and 14,000 additional providers are needed to achieve ti e

target ratio. Even if one assumes that in the future more

physicians will locate voluntarily in underserved areas because of

increased overall supply, nearly 13,000 additional primary care

providers will still be needed to serve 26 million persons in 1990

according to estimates of the Federal Bureau of Health Manpower (32).

42
2.7

1.5

1 1.7 .6

Family income over $15,000

per year

Hospital

Wth a usual place, but place unkgiown

ElPrivate

Family income under $5,000

per year Il No usual . place of care

fll Other

DUnknown as to whether

has a usual place

Usual place of medical care for poor and non poor children: United States, 1974

Pam,
Despite the positive effects of Medicaid and various formula and

project grant programs, financial bathers remain responsible for many of

the most serious and persistent inequities in maternal and child health

care. In fact, just over or f...-quarter of all children under 18 in families with

incomes below $5,000 a year were without any type of health insurance whatsoevereither public or private in 1976. The majority of all women

and children have no insurance coverage for outpatient care. Medical

costs_ relative to income continue v.) be a greater burden for the poor (11

percent) than the affluent (2 percent). Private insurance coverage is inadequate in many cases (33):

Less than 30 percent of American children are covered through

private insurance for out-of-hospital. physician visits.

Employment-based insurance plans shortchange coverage for

children's needs. Only 15 percent cover children's eyeglasses; 9

percent, preventive care; and 32 percent. children's dental care. More than one-hall of the private insurance 'plans fail to cover

prenatal care; 45 percent exclude postnatal care; 90 percent

exclude family planning; and about 50 percent leave major gaps in

covering newborns during the first days of life.

There is also a widespread but erroneous assumption that Medicaid ham.

pretty much guaranteed the poor access to health care. Actually, Medicaid

covers only about three-quarters of the poor, excluding some 7 million

children who are poor according to Federal criteria. Medicaid eligibility

and coverage-varies widely from State to State, including nearly all poor

and near-poor individuals in a few States but only a fraction of the poorin

others. In some States, for instance, Medicaid covers only about 10

percent of all poor children and even for that tiny minority, pays only

about 10 percent of medical expenses (30). Nineteen States do not cover

maternity care of women during their first pregnancy. Moreover, because

in many areas Medicaid fee scl- Jules are very low and the lag titre for

reimbursement is high. mangy r)hysicians simply do not find it in their

interest to participate. Among the 50 jurisdictions with Medicaid programs, 21 have decided

not to include the medically indigent. Such familiesthe poor and nearpoortypically use very few health services, even though they share with

their Medicaid-eligible counterparts an above-average need for such care.

Some States that limit Medicaid eligibility or fail to index ceilings to

account for inflation are finding that they avoid one fc-rm of increased

expenditures only to incur another when the poor and near-poor turn up

at hospitals or public health clinics as indigents.

In many of the Nation's larger and older cities. the problem of financing

health care for the indigent is only one aspect of a broader fiscal crisis. As

the tax base of such cities erodes. municipal governments are increasingly

hard pressed to make ends meet. Chicago is a good example in this regard.

The city has an eroding tax base, but demand for services is up. Lower

income minority families now make up 42 percent of the city population,

an increase from 22 percent in 1960. Rates of unemployment are

considerably above the national average. Predictably, the supply of health

44
services through free-standing clinics, schools, and hospitals has been

under great pressure as available city funding shrinks but needs increase

(34). One result is that the Federal dollar has grown in significance as a

determinant of the availability of health services for the poor. Overall public spending doubled in Chicago between 1970 and 1978, but the city's own budget increased only. 58 percent. By 1978, the Federal Government was spending 4.3 times more than City Hall on city services. Nearly all Federal funds have an influence on maternal and child health care. When

general revenue sharing is cut, school health services suffer. When CETA

workers are reduced in number, the city's health clinics suffer. Health care

is not an independent policy concern, but part of a wider political process. Health services for children, especially those of a preventive and

primary care nature, are frequently the first to be cut in a budget squeeze. In New York City, the health department budget was cut from $50 to $40 million between 1974 and 1978, with an added loss of $20 million in matching funds. Child health and pediatric treatment centers, school health programs, dental health projects, clinics for eye exams and venereal disease treatment were all among the services trimmed (35). There was a

similar disproportionate impact on children's health services in the wake of the adoption of tax-slashing Proposition 13 in California in 1978. Because it is the poor and near-poor who depend most heavily upon publicly supported services, they bear the brunt of such fiscal cutbacks.

THE CHANGING PROFILE OF HEALTH NEEDS

A third 'broad concern results from the fact that the profile of health

problems among the Nation's children and pregnant women is changing. Advances in public health and medical care have led to striking declines

in infectious disease, nutritional deficiencies, and gastrointestinal disor- ders, which were the major causes of illness and death in children 50 years ago. Although these problems still affect significant subpopulations, their continued existence reflects a failure to apply our knowledge rather than

ignorance of appropriate solutions. Parallel to the decline in traditional childhood disease, however, has been an increase in attention and concern directed toward such problems as accidents, child abuse and family violence, learning disabilities, developmental lags, school adjustment problems, issues of adolescent sexuality, excessive risk-taking, substance abuse, and the. social and

emotional aspects of handicapping conditions. In a recent study of seven primary care facilities, the proportion of children recognized as having

behavioral, :aducational, or social problems ranged from 5 to 15 percent, and was substantially higher among low-income children (27). Similarly, it has been estimated that 25 percent of physician referrals for children

today are related to psychosocial or behavioral problems (36). Other manifestations of such problems, which some have termed "the new

morbidity," (37) include the following. Although mortality rates for all other age groups have declined

steadily since 1900, death rates for adolescents and young adults

45
aged 15-24 have actually gone up since 1960, largely as a result of

the growing toU from accidents, homicide, and suicide.

Suicide is the third leading cause of death among teenagers and

young adults aged 15-24; homicide is the leading cause of death

among black teenagers and young adults, accounting for 30

percent of deaths in this age group.

Up to 1 million children each year are the victims of child abuse

and neglect. Between 2,000 and 5;000 die annually at the hands of

their parents or caretakers_ Approximately 11,000 girls under age 15 give birth each year,

incurring significant medical, psychological, and economic risks.

Between 1975 and 1979, the proportion of high school seniors

reporting alcohol use within the past month climbed from 68 to 72

percent; marijuana use, from 27 to 36 percent; and cocaine, from

2 to 6 percent. In 1979 almost 13 percent of women aged 12-18 were regular

cigarette smokers, as compared to 8 percent in 1968.

Only some psychosocial and behavioral problems are n or increasing

in prevalence. More attention to such issues also has resulted because

diagnostic categories have become more varied and complex with the

growth of the health and social service professions, and because more

physicians have become aware that physical, psychosocial, and behavioral

factors are closely intertwined as they influence short- and long-term

health outcomes. This last point is particularly important, and has three

major aspects. First, it is almost self-evident that behavior is one of the principal

determinants of health status. This is especially true for children, both

because so many behavioral patterns established in childhood affect longterm health outcomes in adulthood, and because so many of the

immediate dangers to children are those related to risk behaviors or

situations that admit of behavioral but not medical solutions. Children's

physicians and other health professionals are aware that the best form of

contemporary "well-child care" is one that fosters good basic habits of

hygiene, nutrition, self-concept, and personal judgment on numerous

health related matters. None of this can be accomplished by giving an

injection or writing a prescription. Second, much of child illness has a psychosocial or behavioral

component For example, both children with various types ofhandicap or

chronic illness and their families require intensive support well beyond

traditional medical care if the children are to function effectively in

schools and the community. To cite a different type of example, some

children exhibiting physical symptoms in fact have a psychological

problem. Psychosomatic illness is still not well understood, but various

forms of psychosomatic diagnosis have become routine, affecting approximately 8-10 percent of children (27). Typical symptoms include abdominal pain, headache, constipation, diarrhea, and other common physical

complaints. Fir ^My, some forms of mental illness and deviant behavior among

children have organic causes that may not be immediately apparent_ The

genetic contribution to some types of childhood psychosis and other forms

46
of severe damage to the central nervous system is well established. More pervasive and subtle, however, are organic effects of lead poisoning, and other environmental insults, that can affect cognitive development and

behavior (38). In summary, it is important to distinguish among health-related

behaviors., psychological aspects of disease (including behavioral problems of the handicapped), and the organic determinants of mental health or mental illness_ But each of these is an important element in the new profile of child health need_

Children's Problems by Age Group

Good data on the incidence and prevalence of behavioral and social conditions are hard to come by in this country, partly because many of the

relevant diagnostic categories are somewhat imprecise and partly because no national survey data exist at any level of detail on the topic. Smaller studies have succeeded, however, in establishing a causal or predictive

relationship between some psychosocial or behavioral problems and

various background factors_ Basic demographic and family-related factors are among the strongest predictors of many conditions. A good deal of uncertainty remains about how various prenatal and

perinatal events influence the subsequent development of the child. But it

is generally agreed that very low birth weight is among the most significant predictors of later neurological abnormalities and various

cognitive and behavioral deficits. Considerable attention also has been

given to interactions between mother, father, and infant at birth and

shortly thereafter. Some believe that observation of early mother-infant

interaction :n the maternity hospital is a valuable mechanism for

estimating psychosocial risk (22). Others have focused on teaching parents how to interact positively with their infants in the hospital (39). Shorter maternity hospital stays for mothers mean that these and similar services are more difficult to organize than they once were, suggesting an

important reason for subsequent home visiting_ Among preschoolers, physical and psychosocial growth are very closely

related_ The recent report of the Task Force on Pediatric Education shows

that about 14, percent of mothers of children under 5 surveyed in

telephone interviews reported their children had a growth and develop- ment problem of some sort, and 10 percent reported a behavior or discipline problem. But only about one-half the mothers had discussed

these problems with a professional (40). Once children begin school, many of their psychosocial problems are

identified and defined in relation to schooling. Typically, boys are found

by observers to have higher rates than girls of problem behavior withdrawal, learning disabilities, truancy, aggression, and delinquency. Some problems may simply reflect high levels of energy, exuberance, or

dislike for school_ But behavior that leads to low achievement, falling behind grade level, or dropping out of school is of major concern. More

than one-fourth of boys and one-sixth of girls still in school du: mg their mid-teens have dropped below grade level, and the rates are much higher

47
for minority students-40 percent for boys aimel 30 percent for girls (41).

Recent evidence from the 1979 Report to Congress on the implementation of P.L. 94-142. the Education for all Handicapped Children Act, also

suggests that of the 3.6 million handicapped children being served under

the provisions of the Act, a large percentage have problems that are likely

to include a major psychosocial component. In 1978, less than 9 percent of

those served had ezthopedic, auditory, or visual impairments; this is

compared to 33 percent who were speech impaired, 25 percent who were

mentally retarded, and almost 8 percent who were emotionally disturi. ed

(42). One effect of this program and other special educational efforts

schools has been to increase the demand for accurate diagnosis of schoolrelated problems. The role of physicians and health professionals in this

process still is not well defined, athough spillover effects have resulted in

increased demand for health services of all kinds.

There is a danger that a heightened awareness of the psychosocial problems of school-age children may lead to inaccurate or inappropriate

labeling of youngsters. Definitions of such problems do not always reflect

well-established diagnostic criteria. Some States, for instance, are more

likely than others to label a child retarded. California, which has

suspended school-related IQ testing, reports fewer than 1 percent of its

school children are mentally retarded. But South Carolina and certain

other southern States report figures closer to 4 percent. Such discrepancies

may say more about local labeling practices than they do about the "true" prevalence of mental retardation among school children- in those States

(42). Behavior and learning problems that first appear in grade school often

persist and grow worse in adolescence. In addition, adolescence introduces a number of psychosocial issues in its own right, prompted by a

quantum jump in cognitive development, the discovery of sexuality, and

the temptation to engage in various risk-taking and potentially self- damaging activities. Problems of the Nation's youth are a time-honored

topic and one about which every generation worries. Thus, recent high

levels of concern about adolescent behavior should not be taken to mean

that something is seriously wrong with America's adolescents. But in

reviewing the evidence on causes of death and disability among adolescents, most are clearly rtlated to behavior rather than disease.

Implications for the Health System

The new salience of behavioral and psychosocial problems presents a

major dilemma for primary health care providers. If they are serious about

their mission it is not sufficent to retrench, ignore these major health

problems and determinants, and focus only on infectious disease. On the

other hand, if they hope to have any real influence on behavioral and

psychosocial problems, traditional practice patterns will have to be

altered. Policymakers in turn must provide incentives for appropriate

service delivery structures and modes ofservice financing.

Some implications of the new emphasis are the following:

(I) The "new" health problems cannot be treated in isolation from

the child's home, school, and community environments where

behavioral and psychosocial problems begin and -vhere their

48
Accidents, poisonings,

and violence

Male

Female

18

16

14

Diseases and conditions

Male

. Female

4D

6

44... 01440

ab

ill' Oil. 11. 44/0.

....

41.IP

it 13 15 17 19 21 23 25

Age in years

Death rates for persons 1-24 years of age, according to age, sex, and

cause of death: United States, 1976
50

consequences are felt most keenly. Health professionals will not

be effective if they fail to understand the major i^fluences in the

child's life and interact cooperatively with parents, teachers, and

other professionals and service providers. Moreover, without

such close coordination the potential is great for duplication of

effort, misclassification or multiple and conflicting classifications

of children, and efforts at cross-purposes among various professionals, including physicians. Prototypic of the need for coordination between health professionals, parents, and the schools is

the requirement of P.L. 94-142 for the evaluation of handicapped children and preparation of individualized educational

plans for each. The potential for useful physician input in this

process is high. Another example is in health education, where

counseling by the health care provider should correspond closely

to what is.taught in the school and promoted by the family. Because the family is the principal socializing agent for

children, health providers need to understand the sources of

stress and support for a child's parents. The recent resurgence of

interest in home visitors and other means of offering services

within the family setting is one reflection of.this fact. Similarly,

there is a need to build on the strengths of the home

environment, which health services do not often do. Two-thirds

of teenage mothers live with their parents, for example, and are

often denied publicly financed services because they are members of intact family households (43).

(2) The new importance of behavioral and psychosc5tial elements of

care also reminds us that physical health problems cannot be

treated in isolation from mental health problems Categorical approaches to mental health services tend to disguise the fact

that most primary health care providers are also providers of

mental health care. It has been reported that up to 60 percent of

all encounters for mental hetilth problems take place in the

general medical care system (32). Primary care physicians

without the ability to diagnose psychosomatic illness, exceptional stress, the effects of inappropriate health behavior or the

psychological consequences of physical illness are not likely to

be effective in responding to physical or mental health problems.

(3) The definition of health-related services that should be routinely

provided in organized primary care settings needs to be

expanded to include various services that are not a traditional

part of curative medicine and have often been seen as "boundary

services" to be provided by others. One good example is

outreach, case management, and social services to families with

special needs to ensure attention to preventive measures in the

home, appropriate use of preventive services, and assistance in

obtaining services to make possible a coherent and continuous

response to the child's needs. Proper treatment for learning

disabilities may not require drugs but rather effective cooperation with teachers or parents to change practices in school or at

0. )
home. Similarly, nutrition counseling may require more than

simply instructing the parent during a brief well-child visit. Or,

consider the example of the adolescent girl who gets pregnant because she does not see any more attractive alternatives in her

life. This is not a medical problem, but has profound health

implications. Because many "boundary" services to enhance prevention and health promdtion tend not to be covered by third-party payers, there is little incentive to provide them. Implications for the

financing of services are particularly tricky because policymakers should probably not offer open-ended reimbursement for such

services without careful control of quality and effectiveness. Conditions under which"boundary" services should be financed

are discussed more fully in chapters 5 and 9 of the report. Whatever the payment mechanism, "boundary" services will play an increasing role in health care as the Nation moves

toward a greater emphasis on prevention and health education. It is noteworthy that State health agencieswhen asked to list actions that should be given highest priority to further reduce

infant mortalityplaced first on their list an increase in

consumer education about general health care, parenting skills, accident prevention, nutrition, and the effects of alcohol and

drug abuse during pregnancy. They also emphasized the need for sex education in schools and support services such as transportation (44). (4) The changing health needs of children imply changing require- ments for physicians and other health care personnel. This faci has led to a rather painful reassessment of training priorities by

the relevant health professions, especially pediatrics. As it has become clear that the .training of general pediatri- cians is inadequate for many of the child health pioblems they most often encounter, the profession has moved .assertively to

address the problein. The Task Force on Pediatric Education, whose recommendations already have taken effect in many medical schoOls, recently offered a far-ranging vision of needed

reforms in the training of general pediatricians. Similar reforms are contemplated by family practice, obstetrics and gynecology, and nursing, to name only a few of the relevant health

professions. These reforms will have a long-term effect only if fundamental incentives and organizational structures in medical education

and practice are changed. At present, for example, cmy a few

residency programs offer sufficient opportunities for co.nmunity- based training in primary care. In one major city hospital, the

chief of pediatrics told the Panel that his residents had very little

experience with well children and had great difficulty when they

set up practices of their own handling day-to-day problems of mothers and children, such as giving advice on breast-feeding

(45).

51
The problem of inappropriate training is made more acute by

the projected increase in numbers of pediatricians and other primary care providers. This trend and its implications are discussed in chapter 12. An increased ratio of health care professionals to children in 1990 will matter little if these

personnel are not equipped to meet the real health needs of mothers and children.

Finally, the new profile of need has implications for manpow- er mix and coordination among various types of health-related

personnel. Because behavioral and psychosocial needs are not

the exclusive purview of physiciansindeed physicians may not be best equipped to deal with some of themthere is a need for

team approaches using nurse practitioners and other nurses, nutritionists, social workers, psychologists, teachers, and others. It would be a major policy error to have expensive professionals performing services that should be inexpensive to provide. The history of insularity within the various health professions and the absence of shared training opportunities are major obstacles to

effective care. Service structures and incentives will need to be

changed before it is realistic to expect effective primary care in

all of the Nation's communities during the 1980's.

THE FAMILY AND CHILD HEALTH

A fourth major concern expressed frequently to the Panel was that the health care system does not adequately recognize or support the central role of the family in child health, and that the American family itself has changed dramatically over the past two decades, with possible serious consequences for the health and well-being of the Nation's children. This

same concern was reflected in the agenda of the National Family Impact Seminar and the 1980,White House Conference on the Family. There is no greater influence on the health of any child than the family. From conception on, a child is dependent upOn his or her mother and

other family members not only for the physical necessities of lifefood, shelter, clothing, and protection from harmbut also for the emotional support and intellectual stimulation needed for healthy growth and

development. It requires no great expertise to recognize the importance to

any child of a secure, loving, and stimulating family environment. But it is

important to realize that a family's ability to support and nurture a child

can be affected either positively or negatively by a number of external circumstances, including the presence or absence of adequate income, decent housing, a safe neighborhood, and close and supportive relatives

and friends.

Our growing recognition of the psychological and social components of health has enhanced our awareness of the family's importance. An

inadequate home environment can have severe adverse consequences on

the health of a child. Indeed.. certain clinical syndromesaccidents and

ingestions, pica (relentless craving for nonfood substances), failure to

thrive, child abuse and neglectcan threaten a child's survival. Such

52
illnesses appear to be linked with family stress, including such problems as unemployment, drug dependency, marital difficulty, poor housing, illness

in one or both parents, and poverty. Research over the past three decades has consistently pointed to family

stress and disorganization as an overriding factor in the development of behavior disorders and social pathology (46). Much of this same research

has shown that the forces of disorganization arise not so much within the

fatally itself as from the outside, from the circumstances in which the

family finds itself and the way in which those car' cumstances shape the

family's way of life.

The Fsunib and Health Providers

The family is not only the principal influence upon a child's develop- ment, it is also the intermediary between the child and the outside world,

including the health care system. It is parents who decide when to seek

health care for a child, where to seek it, and from whom. It is parents who

provide the lion's share of all care to a sick or injured child. Health providers can support, encourage, and enhance the competence of parents in their role as caregivers, or they can directly or indirectly

undermine and denigrate it. The physician who brusquely orders a mother

to give her child penicillin four times a day for 10 days for a sore throat without explaining why it is important to do soeven after the throat is

no longer soreis helping neither mother nor child, for very few parents will follow gie instructions faithfully in the absence of such explanation. Health providers who make no effort to help parents understand what can

reasonably be expected of a child at various ages, and how the parents can help the child master new skills, are likewise failing to support caregiving

competence. Fortunately, there are examples of ways in which the health care system

can and does promote and .enhance family competence in caregiving. There hs been an enormous movement, over the past decade or so, toward 'family - centered maternity care. an approach that has been

formally endorsed by virtually all of the professional societies whose

members are most deeply involved in the care of pregnant women and

their babies both before and after delivery. The precise components of

such careand the professional participants in itvary from one

institution to another, from one community to the next. But at the core is

one guiding principlethat childbirth education, labor and delivery, and

care for a newborn are enhanced when other family members, especially

the father, become active participants along with the mother and when

health .professionals encourage rather than restrict early and frequent

contact between the newborn infant and its parents. A second example of health care practices that enhance the role of the

family can be found in the increasingly widespread provision,for parental participation in the care of hospitalized children. Allowing parents or other adult family members to be with a child during diagnosis and

treattre. nt procedures, and overnight if the child is hospitalized, both eases a child's fears and enhances the parent's ability to understand what is happening to the child and to assist in the care of that child.

53
Finally, on a somewhat different level, there is evidence that early

childhood development programs, which include a health component, can

improve both family functioning and competence and the overall health of

children. A 1979 General Accounting Office study showed that such

programs "can result in reduced health, social, and educational problems

in young children," and noted that those problems, left unattended, "arc

expensive and difficult to overcome in later years." According to the GAO

report. developmental programs for low-income children were most

effective when the child entered at an early age and when parents were

closely involved in the program. Particularly effective were Head Start

Child and Family Resource programs of the Department of Health and

Human Services (DHHS) that utilize home visitors to coordinate health.

education. and social services for enrolled families (21).

Changing Family Composition and Circumstances

Some pronounced changes have occurred over the past two decades in

the composition of American families and the circumstances in which they

live. Some of these changes may have significant consequences for the

health and well-being of the Nation's children, but their full impact is not

yet clear in most cases and is difficult to quantify in any event.

The past decade has seen an increasing diversity in living arrangements

among Americans, bcth in the composition of households and families at

a given time and in the experiences of individuals over their life course. Although three-quarters of the population still live in married couple households, and most still live for at least some of their lives in nuclear

families, the stereotypic two-parent family with the father working and the

mother -raising children is increasingly n !-.;ng of the past. Today's family

forms include men and women living c t, single parents, two-worker

families, retired couples. and families t. .:. children have moved away.

In the coming decade, these family will constitute a growing

segment of the Nation's households. Likewise, as people move through the

life cycle, they are likely to have more diverse experiencesfewer years

spent in nuclear families, more changes in types of households, more

living apart ft.../it close relatives, and a wide variety of family relationships.

The i 970's witnessed a steady decline in the proportion of families that

include children. in the number of children per family, and in the number

of children overall in the United States. Although one might think that fewer children in each family and in society as a whole may make it

possible to devote greater care and attention to those children we have,

there is the danger that families with children will become increasingly

isolated and that the Nation as a whole will devote lessnot moreof its

social policy attention to that minority of the population that is young.

At the same time that the number of children has been declining, the

types of families in. which they grow up have been changing. Although only 4 percent of all children do not live with any parent, and the vast

majority live with two, the proportion who live with just one parent has

risen from 9 percent in 1960 to 12 percent in 1970 and 19 percent in 1978.

By 1990.. it is estimated that 25 percent of all children will be living with

54
mmop Under 18 years of age

85 years of age

10

00`

to °law. al. 1.16.1

4.111.

41.6.

to 11.18.

1111.

0'1°

osso

in =IMP MME. MB

0

1 1 1 1 1 I 1 1930 1940 1950 1960 1970 1980 1990 2000

Year

Population under 18 years of age, and population 65 years of age

and ovitr, per 100 total population: United States, 1930-2000,

selected years

4.
just one parent and that nearly one-half of all children will spend some

part of their childhood with a single parent (47),

These percentages are much higher for black families. In 1970, some 32

intrcent of black children lived with a single parent, and by 1978, this rate had increased to 45 percent In fact, about the same number of black

children now live with one parent as with two. The increase in single-parent families can be attributed, for the most

part, to an increase in marital separation and divorce. Since 1950, divorce

rates have more than doubled for women 20-29 years of age and have

tripled for women 30-44 years of age. Other single-parent households are

the result of out-of-wedlock childbearing. One of every five single mothers

in New York City. for example, has never been married (48).

Single-parent families have lower incom.....4 than two-parent ones. in part because they have only one wage earner, in part because that earner is

nearly always a woman and women on the average earn less than men,.

and in part because women who head families find it difficult to work fulltime while also shouldering sole responsibility for child care and

housekeeping. . Although poverty rates in the United States dropped sharply in the

1960's, they remained relatively constant in the 1970's. The proportion of

children living in poverty actually increased slightly in the 1970's, largely

as a result of the increase in the number :, of single-parent families. The

plight of black and Hispanic-American children is especially severe-41 percent of all black children and 27 percent of Spanish-origin children

were living in poverty in 1978, compared with just 11 percent of white

children.

La many parts of the United States, Spanish-speaking families are the

fastest growing minority. The birth rate of the resident Hispanic population is more than twice that of whites and 60 percent higher than

blacks (49). In seeking health services, women and children in these

families must confi <Alt not only the financial and organizational barriers

that other poor and minority groups face but also cultural and language

differences that impede neimingful communication.

In addition to the increase in single-parent families, -Abe past two

decades saw a major upswing in the proportion of mothers who work. In

1979, 54.5 percent of all mothers of children under 18 and 45.4 percent of

all mothers of children under 6 were in the labor force, compared with 28

percent and 19 percent, respectively, -in 1960_ In short, by 1979, 51.4

percent of all children under age 18 years and 42.6 percent of all children under 6 had mothers who worked_ This trend is expected to continue in

the 1980's (50-52).

Relevance to Health

While the implications of these demographic changes for the health of

mothers and c1:41dren cannot always be pinpointed with precision, some

are fairly apparent In particular, it seems evident that the increase in

single-parent families has some ominous implications for child health

since such families generally have low incomes and poverty is the single

56
White

awe. so mom a. Black

Spanish origin

1960

I

1965 1970 1975 1978

Year

Percent 4:of children and youths under 18 years of age in poverty,

according to race and Spanish origin: United States, 1960-78,

selected years

1
biggest predictor of poor health in this country. Further, the unrelenting

stress experienced by a woman trying to raise a family by herself on

severely limited resources can have a detrimental impact on her own

health and that of her children. The same is, of course, true of a single

father, although he is less likely to be poor. Stress is also a serous problem for working mothers in two-parent

families, for such women typically continue to carry the major share of the

child care and housekeeping load at home even as they put in full days on

the job outside of the home. Indeed, stress is perceived as a serious

problem by most American families, whatever their composition, and is believed by a number of experts to be a significant contributor to the

rising incidence of psycholoL social, and behavioral problems among

children. Such problems as drug abuse, alcoholism, child abuse, suicide,

homicide, and other forms of violent or aberrant behavior are almost

certainly caused at least in part by family stress. In the 1979 General Mills

American Family Report, 8 out of 10 respondents indicated a need for less

stress in their daily lives (53). Another result of increased participation in the work force by mothers

is that parents are now spending less time overall with their children.

Indeed, one study of sixth graders in the Bay Area/San Francisco-Oakland

found they spent less than 1.5 hours with a parent between the end of

school at 3:00 p.m. and bedtime at 10:00 or 10:30 p.m. --and part of that

was in front of a television set (54). Other studies have shown that

children are more reliant on their peers than they were 10 or 15 years ago, and that such attachments seem to be more a product of a lack of

attention and concern at home than of any positive attraction to the peer

group (55).

Child Care I

The increase in the proportion of mothers in the labor force has been

accompanied by an increase in the need for child care_ Information about

care arrangements tends to be sketchy and 'outdated, but available data

have consistently shown that informal arrangements in or near the home

predominate. For example, U.S. Census Bureau data for 1974-1975 show

that 55 percent of all children 3-6 years old whose mothers worked full-,

time were cared for in their own homes by a parent, relative, or other babysitter; 36 percent went to the home of a relative or other babysitter,

and just 6 percent were in day care centers. Schools, of course, offer a form of "child care" for the larger part of a

typical working day. Fully 99 percent of all children 6-15 years old are

enrolled in school, along with 90 percent or 16- and 17-year-olds.

Preschool enrollments have jumped significantly in years as well,

partly because of the need for child care but also be.,7;,-._:_=4- ,)f the berlefli:.

they offer to young children. The proportion of chi:14.1-rr.ra 3.-5 years old in

preschool increased from 11 per cent in 1966 to more than one-third in

1978. About 83 percent of all children 5 years of age ',were in kindergai-ten

in 1978, compared with 68 percent in l967 (47).

Although some people have expressed concern 'about the possible

negat- consequences that day care may have on child de,elopment, a

58 I I
N

recent revi f the research literature on the subject offers no support for

this view (56). Ling research indicates children of working mothers develop just as -well on the average as those whose mothers remain at home and show no difference in the rate of psychological disorders. In

general, harmony and parental love within the family are what count in

meeting a child's needs, regardless of work and care arrangem_mts. More data are needed, however, en the adequacy of informal care arrangements and day care for infants.

In concluding his brief section regarding health promotion as it relates

to American family life, the Panel wishes to take note of not take

sides inthe highly emotional debate which has surrounded all recent

policy determination aimed at families. The family has come to be a

symbol both for the most conservative Americans, who see it as a private

sanctuary and the building block of a free and libertarian society, and for

the most liberal, who see it as an entity which is highly interdependent with other elements of the social and economic order and in need of

routine social support, both private and public. We believe that both of

these visions are right, and that they are not mutually exclusive. It makes

little sense to choose one of them simply in the interest of ideological purity. We hope that in the future, policymakers will weigh the impact of policies on the family according to their particular merits or demerits

rather than the broader emotional responses they evoke.

FRAGMENTATION AND DUPLICATION

The Panel's fifth and final major concern involves fragmentation and

duplication of effort among programs, policies, and providers. Evidence of

this problem was frequent in our hearings, site visits, and expert consultationsoften with reference to gaps and overlaps in service, and

resulting inequities and inefficiencies. Analytic understanding of the

origins of fragmentation and realistic proposals for significant reform were much harder to come by, however, perhaps because of the sheer

complexity of the phenomena being criticized_ All agree that it is a serious

problem, but particulars of the problem and proposals for its solution tend

to differ depending on whether the beholder is a member of Congress, a Federal bureaucrat, a State or local agency representative, a service

provider, or a parent. Four kinds of fragmentation give cause for con,--ern: among Federal

programs and policies, among local delivery units, among levels of government responsible for orchestrating health programs, and among

various categories of personnel working in maternal and child health and

health-related fields.

Federal Programs and Policies

Since the 1960's, there has been a tremendous increa:;t-- in the number of

Federal programs and policies relating directly or indirectly to maternal

and child health without any comparable increase in coherence or overall

policy direction for. these programs. There are at present anywhere from

59

r
21 to more than 100 relevant Federal programs, depending on how

broadly maternal and child health is defined (57). The very difficulty in

deciding how many programs should be listed indicates just how complex

the fragmentation issue has become. Prior to the 1960's, major Federal involvement in maternal and child

health was largely limited to Title V of the Social Security Act, in effect as

a formula grant program since 1935, and to the school-based food

supplement programs of USDA which commenced in the 1950's. The last

15 years, however, brought the enactment of Medicaid, the Community

Health Centers, Project Head Start, increased support for day care, family planning, compensatory education, and extensi-,:c -iew programs

for the handicappedto name just a few of the biggest programs. Oversight and administration of the major maternal and child health

programs are spree d among a variety of congressional committees and

executive branch agencies. On Capitol Hill, authorizing responsibility

rests primarily with the Interstate and Foreign Commerce Committee and

the Ways and Means Committee in the House, and with the Labor and

Human Resources Committee and the Finance Committee in the Senate.

Major health-related programs in agriculture and education lie outside the

purview of the principal health subcommittees. In addition, the Appropri- ations and Budget Committees on both sides of the Hill wield major

influence over all maternal and child health programs. Executive branch responsibility is similarly dispersed, with at least 10

Federal agencies involved in interpreting and carrying out relevant

legislation- Many of the major programs are lodged in DHHS within

which authority is divided along several different lines. Within the Public Health Service (PHS), the Office for Maternal

and Child Health (OMCH) administers the Title V program and

several smaller ones. including the Sudden Infant Death Syn- di-ome, Hemophilia., Genetic Disease, and certain aspects of the

Supplemental Security Income program- Other parts of the PHS

are responsible for Community Health Centers, the Rural Health

Initiative, Migrant Health programs, and Family Planning, and

still others handle childhood inun11ni7ntion, health education and

research. Although the PHS is responsible for most maternal and child

health programs and policies, the Health Care Financing Administration (HCFA) administers Medicaid, including EPSDT.

Separate from the programs and policies of both the PHS and

HCFA are those of the Office of Human Development Services,

which administers Title 20 f the Social Security Act and also

includes the Administration l's-:r Children, Youth and Families,

which in turn administers the Head Star. program, the Children's Bureau, and various youth programs.. All of this division of responsibility occurs just within DHHS; a number

of other major programs lie in completely different departments such as Agriculture (school lunch and breakfast programs), Education (the

Education for All Handicapped Children program), Transportation

(traffic safety programs), Labor (occuvNational health programs), Justice

(juvenile delinquency programs), and Defense (CHAMPUS). There is at

60 .10
present little unity, no overarching authority, and only a minimum of joint

planning among all these programs and agencies. Maternal and child health advocates have been particularly concerned

by the downgrading and dismembering of the Children's Bureau, which

for years was the focal pc,int for na nai policy toward children. Maternal

and child health was broken 3m the Bureau at the end of the 1960's

and subsumed under the PHS, and a variety of additional changes have

diffused authority and responsibility for it and other children's programs. There aie many who would like to see a single focal point for maternal

and child health recreated within 7, iIHS_ Absence of such a focal point

has been further brought home by the fact that two of the most

consequential legislative initiatives of. the 1970'sthe passage of P.L. 94-142, the Education for All Handicapped Children Act, and the

expansion of the Supplemental Food Program for Women. Infants and

Children (WIC)have taken place entirely outside the DHHS orbit.

But it is easier to criticize the situation than to simplify it. The current

array of programs is no accident. It evolved over time from a complex

interaction of constituency pressures, judicial decisions, legislative enact- ments, and administrative actions. Each program has a unique history and

purpose, and each has legislators, bureaucrats, and interest groups who wish to sustain or expand it. As two major recent studies of Federal policy

toward children make clear, advocates of increased Federal expenditures

for mothers and children have generally Found it easier to win support for

programs focused on special needs or target groups than to seek broader

policy reforms (58. 59). There are, of course, significant benefits to pluralism. Having more than

one approach to a problem can offer more than one avenue for success. A

single big agency, furthermore, is not necessarily more efficient than a

number of smaller ones. However, having said that, the Panel nonetheless

believes major changes must be made to restructure management of

health programs for mothers and children so they can function as a

coordinated Federal-State-community system. This topic is explored more

fully in chapters 10 and 11.

Loc 1 Providers

Another concern relates to the wide array of primary care arrangementi

in many communities; the lack of coordination among them; the pattern

of multiple use by consumers; and barriers to appropriate use created by

differences in the scope of services, eligibility, hours of availability, extent

of backup care, and other characteristics of these arrangements. Especially

in large metropolitan areas, these problems are common. Private officebased practitioners, clinics in hospitals. health departments and schools,

Head Start programs, family planning clinics, public comprehensive care

centers and more exist in close proximity to one another and almost never

operate collectively as a health care "system." To a large extent, the familiar two-tiered pattern of care still predominates in most urban and suburban neighborhoods, with poor mothers and

children receiving care from hospitals and public clinics and more affluent

61

k.mir

L.,
ones visiting private office-based physicians. Distinctions between private and public providers have been somewhat blurred by the advent of Medicaid; almost 85 percent of. general practice pediatricians, for

example, receive at least some of their income from this and other public

programs (60)_ Once again, it is easier to describe the problem than to prescribe

solutions. The Nation is committed to pluralism in health care, with a

mixed private-public system and the right of consumers to choose among

a variety of provider arrangements_ The historic division of services

between preventive care in public health clinics and acute care in other

settings evolved partly as a way of avoiding direct competition between

public and private providers. Newer public comprehensive care programs

have been targeted to particular income and age groups in an efort to

reach those in greatest need, only inadvertently creating inefficiencies

through conflicting eligibility rules and copayment requirements. Likewise, many hospitals did not set out to provide primary care but found it

necessary to do so as a result of their ready accessibility, around-the-clock operation, and responsibility to serve as a care source of last resort to the

poor. Although it is admittedly difficult to overcome fragmentation at the

local level, it can in fact be done, as a few communities have

demonstrated. Cambridge, Mass., for example, once suffered from exactly

the sort of multiplicity and duplication of programs found in so many

urban communities today. However, in 1967 the city council established a

single health, hospitals, and welfare agency under a commissioner who in

turn delegated responsibility for municipal child health services to the the

Community Hospital, Department of Pediatrics. With all relevant public budgets controlled by a single source, a new system of school-based

primary care units was set up to provide both sick and well-child services.

It is still doing well today, offering integrated care to children at a per

child cost significantly below that of other providers (61).

The Denver Department of Health and Hospitals has likewise overcome

the fragmentation problem by pooling funds from a variety of Federal,

State and local sources to create an impressive system of neighborhood

comprehensive care clinics. Current examples of service integration or simplification seem to be the

exception rather than the rule, perhaps because they require the talents of

unusually persistent and politically adroit health professionals who are

successful in tailoring their efforts to unique local circumstances and

opportunities_ One community's innovative system can seldom be replicated whole cloth in another, and local political conditions and bureaucratic "turf' interests frequently make service integration all but impossible. As a consequence, service coordination is probably a more realistic

goal in most communities than service integration. More will be said in

chapter 10 about how to promote this coordination.

Intergovernmental -Responsibility

In maternal and child health, as in other realms of human service, there

is a complex division of responsibility among Federal, State, and local

62

4
authorities for defining and achieving policy objectives. Some functions

are currently not performed well at any 1,..-vel of government whereas others are performed simultaneously at all levelswith substantial

resulting confusion about who should be doing what_ Indeed, it is a

challenge of considerable magnitude simply' to comprehend what is

happening as various Federal programs are implemented at the State and

local level_ States differ widely in how their human service structures are organized, the distribution of responsibility across agency lines, their relationships with county and municipal governments, and so on. Even when policy

objectives are clearly established by Federal authorities, administrative

and bureaucratic factors unique to each State result in widely varying

implementation patterns and problems. Many States now have human service budgets that rival that of the Federal budget in complexity, if not total dollars. Sta4:e program categories

mirror Federal ones, and are in large measure determined by them_ Each

State has its own programs and matching fund sources to link with

Federal monies, making it very difficult to trace Federal dollars as they

merge with State and local ones_ A good example of the complexity at the State level is New York, which

has prepared a "children's budget" identifying all State social service

expenditures directed at the 0-18 age group_ This document shows 11

program functions spread across 25 different agencies with a fiscal 1981

budget of almost $5 billion in Federal, State, and local funds (62).

All Federal programs must report periodically to Congress on the progress they have made toward legislated goals. At a minimum, this

requires data on State compliance, but programs vary greatly in the

amount of detail they can provide_ In general, programs that operate

through formula grants allowing relatively broad State authority and minimal direct Federal management produce the least data on how money

is spent and who is served. Project grant programs produce more such

information, but seldom show the relationship between the program ix"

question and other State and local efforts. If it is sometimes difficult to evaluate State implementation of Federal

programs, it is not at all hard to describe the views of State and local

administrators about the problems they encounter in trying to use Federal

funds efficiently_ State authorities insist they could do a far better job of

.-ering health services to pregnant women and children if the Federal -

Ciovernment would limit its role to defining broad health objectives and

transmitting funds in a manner giving States maximum discretion over how they should be spent_ In the State view, present problems are the

result of categorical program regulations, lack of consistency in ,defining

program roles and client eligibility, and excessive Federal paperwork (63). The past decade has been especially difficult, moreover, because the,

Federal Government has been enlarging its goals, paying less, ana

demanding more. An equally forceful case is made, however, by many groups who

welcome the Federal involvement and wish that Federal control of

maternal and child health programs could be increased, not lessened, so

that policy objectives can be pursued with more or less equal vigor

4- 63

1.*y
everywhere in. the Nation. Indeed, as the Panel's site visits'made clear, it is

likely that in some States, an enlargement of State authority and

curtailment of opportunities for local communities and consumer groups

to deal directly with Federal authorities might well risk limiting access to

health care for many poor and minority children and mothers_

There is nothing new, or necessarily unhealthy, about thelfederalism.

debate. It has grown acute in the maternal and child health deirnain,

however, partly because of recent fiscal trends and partly because the

history of Federal programs relevant to maternal and child health preseuts

an unusually stark contrast between programs like Title V and Medicaid, which offer the States substantial autonomy, and those such as Head

Start, the Comprehensive Health Centers, and other projict grant programs, which largely bypass State decisionmakers. This contrast is

mirrored in every State by two parallel planning processes: one the

State health _department focusing on maternal and child health and

crippled children's services, the other vir. the federally naandaled health

service agencies focusing on federally supported programs. In the coming decade, conflicting pressures for greater Federal accountabjlty and greater State autonomy must be expected to continue. Orice again, the virtues of pluralism are matched by its limitations.

However, the Panel believes that certain steps can be taken that will better

specify national goals, delineate more precisely the role of the States in

attaining these goals, and reduce at least some of the but7dens presently

perceived by State decisionmakers. We return to these and related issues

of governance in chapters 10 and 11.

Personnel with Relevant Expertise

Another aspect of the fragmentation problem results from the rapid

increase over the past 30 years in the number and types of professionals

whose expertise is relevant to the health care of children and pregnant

women. Increase in absolute numbers of personnel probably is less

significant in this regard than the growth of new specialties and categories of personnel. The growth of new career tracks within and outside

medicine has raised the stakes considerably for those who would

coordinate efforts across all relevant professions and public service

sectors. Health care for children is by no means the exclusive province of

pediatricians A wide variety of generalists and specialists are caring for

youngsters of all agei'in private offices, major medical centers, community hospitals and public clinics. There has been a significant growth and

diversification within the nursing profession a..> well, producing many

different levels of maternal and child health care ;kill_ Graduates of

pediatric and family nurse practitioner programs, for example, can meet about 80 percent of all child health needs, although that does not

necessarily mean they can treat 80 percent of all children. The arrival on

the scene of such highly trained personnel does, however, raise questions

about the appropriate division of labor between them and physicians in

primary care settings.

64

1

-
Very significant growth has also occurred in the number and types of professionals in various health-related fields, including mental health, psychology, nutrition, social work, and special education. In the schools, personnel with health-related expertisesuch as learning disabilities

specialists and counselorshave proliferated_ As attention to psychosocial and behavioral problems grows, it is inevitable that these personnel, school nurses. and professionals in the mental health system will share

responsibility with physicians for screening, diagnosis, counseling, and

treatment_ Similar:y, as "boundary" services such as case management and advocacy_ -transportation, and home visiting come to be seen as essential in promoting appropriate patterns of use, social service workers will find that they increasingly overlap in responsibility with health

'professionals. Within all of the growing health-related professions there is an unmistakable trend toward specialization, adding further complexity. The past 20 years have also seen a new emphasis develop on the role of paraprofessionals in offering many access-related services for low-income populations_ In Denver, for example, demonstrations in home visiting

have involved community residents with no medical training (64). These visitors ensure that children and parents in need of services are identified, know about the community clinics, and use th... clinics appropriately. On balance, it is certainly good that the Nation now has more health

professionals and related personnel, with more diverse skills. However, a

strong centrifugal tendency has been created by this trend. New

professions create new turf. Especially in the realm of psychosocial and behavioral problems, there has been a proliferation of new diagnostic

categories and therapies, sometimes incongruent with one another. Problems of fragmentation are likely to worsen in times of funding

cutbacks as narrowly defined priorities within health, mental health, education, and social service sectors take precedence over cooperative and

collaborative efforts across the lines. This tendency is especially unfortu- nate for children, who must need a broadly based, all-encompassing pattern of care_ Consider, for instance, the- prevention and treatment of

child abusea problem that routinely demands the collaboration of professionals in four public service sectors: the courts, protective services, the health care system, and the schools. If any one of these sectors withdraws, declaring child abuse is not its problem, effective action

becomes much more difficult_ - "Team care" within the primary health system also is a matter of professional collaboration_ The need for more such care has been asserted

frequently over the past two decades and is asserted again in this report. In some cases, it is already a reality. Within pediatrics, most younger

physicians are now opting for group practice arrangements which pool the

expertise of colleagues with different specialty interests along with irse

practitioners and other personnel. These are the primary care practice

settings most likely to be professionally stimulating and to provide highest

auality care. The federally supported Comprehensive Health Care Centers

offer an even more ambitious model, where physicians and nurses work

side by side with nutritionists, dentists, mental health professionals, social

workers, and early childhood educators. Howevtj-, routine collaboration

between diverse professionals remains the exception rather than the rule,

65
and even referral or consultation patterns tend to be very limited.

Consequently, the interests of children are not as well or efficiently served

as they might be. Economies bf joint effort are likely to occur over time only if training opportunities, organizational structures, finanfing incentives, and consumer education are designed to promote them. Because the cost of failing

to promote joint effort is so greatin terms of both dollars wasted and

low quality of carethe Panel believes that high priority should be given

to promoting better collaboration among professionals and service sectors

in the future. Strategies for advancing toward this end are discussed

throughout the report.

4'

This introductory section, although designed to capture and order the

principal concerns that emerged: fr-nn the Panel's contacts with parents, health professionals. researchers aid policymakers, is no more than a

rudimentary map of the terrain. Readers seeking more detail may wish to

consult the sources referenced in the text, and the materials published in

volumes II, III, and IV of this report (65). Succeeding chapters of this volume return to the concerns outlined here

and attempt to sketch a national strategy for addressing them These later

chaptcts will examine major components of national health caze policy

health protection and promotion efforts, needed services, the delivery

system, financing of services, administrative arrangements, manpower planning and researchto see how each can become more effective in

meeting the concerns highlighted here.

REFERENCES AND NOTES

(I) Lasts of witnesses at Panel hearings, authors of background papers. and contributing experts-are

found in the appendixes to this volume. The Panel conducted two site visits, to Jackson. Missisiippi.

on October 18-19, 1979 and Chicago. Illinois. on March 20-21. 1980.

(2) Select Panel for the Promotion of Child Health. Better Health for Our Children: A National

Strategy. Vol III. Washington. D.C.: US. Government Printing Office. 1981.

(3) U.S. Department of Health, Education, and Welfare. Public Health Service. Healthy People. The

Surgeon General's Report on Heaith Promotion and Disease Prevention. Washington. D.C.: U.S.

Government Printing Office. 1979. (4) Canadian Task Force on the Periodic Health Examination. The Periodic Health Examination.-

Canadian Medical Association Journal 121: 3-45, November 3. 1979.

(5) For a fuller listing of such resource documents. readers arc referred to volume IV. which includes

. background papers and extensive bibliographies. Data not referenced in the present chapter can be

found in volume of the report. (Select Panel for the Promotion of Child Health. BetterHealth for

Our Children: A National Strategy. Vols Ill and IV. Washington. D.C.: U.S. Cjovern.ment Printing

Office, 1981.)

;6) American College of Obstetricians and Gynecologists. Testimony presented to the Select Panel for

the Promotiod of Child Health. rebruary I. 1980. (7) Perinatal Subcommittee. Greater New York March of Dimes Health Professional Advisory

Committee. -1-aulc of Access to Prenatal Care in New York.- Mimeographed. 1979.

(8) U.S . Department of Health and Human Services. Center for Disease Control. Unpublished data.

September 1980. (9) Popkm R . J. Akin. M Kaufman. and M. MacDonald. -Nutritional Program Options for Maternal

and Chad Health.- Better Health for Our Children: A National Strategy. Vol IV. Washington.

D.C.: U.S. CsoverriMelit Printing Office. 1981.

66
(JO) American Academy of Ophthalmology. Statement on Infant and Children's 'Vision Care. Prepared

far the Select Panel. April 29. 1980.

(11) For a full diecussion of EPSDIT implementationproblems, see Foltz. A. The Politics of Prevention:

Child Health Under Medicaid. New Haven. Conn.: Yele University. Doctoral thesis completed

under support from HEW/NCHSR. Grant H5 02852. October 1. 191tr

(12) Snkford. J. C ADitertil Health Needi of Children and Adolescents.- Prepared for the Select Panel

f or the Promotion of Child Health_ Unpublished. sad. June 1980.

(13) U.S. Department of Health and Haman Services, Health Care Financing Administration.

Unpublished data. Summer 1980.

(14) National Highway Traffic Safety Administiation. -Highway Safety." Report on activities under the

Highwscy Safety Act of 1966. NH SA. 19T9.

(15) For a general diacumion of this issue. see Robertson. I- -Environmental Hazards to Children:

Aseassznent and Option for Amelioration.- Better Health for Our Children: A N.stional St:algae,

Vol IV. Washington. D.C.: US. Csoverninent Printing Office. 1981.

(16) Lee. P. R. Statement before the Subcommittee on Child and Human Development of the

Committee on Human Resources. U.S. Senate Washington. D.C.. February 24, 1978. See also

Eccard. N. V. and C. W. Tyler, Family Planning Evaluation Division. Center for Disease Contra

U.S. Public Health Secure. Statement on Family Planning and Child Health- prepared for the Select

Panel, July is. 1980. z ( / Witte. J. J. and N. W. Arnick. -The Benefits from Tell Years of Monies Immunizations in the

United States.- Public Health Reports 90. May -June. 1975.

(111) Comptroller General of the United States. U.S. General Accouritini.- Off x. Prrventing Mental

Retardation-More Can Be Done. Wishingtoc. D.C.: U.S. Government Printing Office. HRO-77-

- 37, October 3. 1977.

(19) Seeley. C. and J. S. Liston.. -Early Child Dereloprnerit Programs in Texas: An Analysis of Benefits

and Carts." Texas Department of Community f `r-irx. May 1975. -

(21)) Gish. G. W. -Cost Benefit Ratios for SCIECEW 1-1noci.dation Procedures?' Indiana State Health

Departnsi-4. 1980.

(21) Cowper- - er General of the United States, US. General Accounting Office- Early Childhood and

Family 1 )evelopment Programs-I improve the Quality ofLife for Low Income Families. Washingto3r--TS\

D.C.: U.S. Government Printint Office, HRO-79-40 February 6. 1979. See also Royce. P. M. et al.

-Preschool Programs and Later School Competence ofChildren in Low Income Families " Science

206, April 11. 1980. (22) See, for example. Helfer. R. E. and C. H..Keeipe. Child Abuse and Neglect- Cambridge. Mass..: -

Ballinger Publishing Co.. 1926.

(23) U.S. Congress. Office of Technology Assessment.-the Implications of Cost-Effectiveness Analysis

of Medical Technology." Washington. D.C.: U.S. Government Printing Office. August 1980.

-124) Roberts, E. J. Childhood Sexual Learning: The Uk1107itle22 Curricula. Cambridge, Mass.: Ballinger

it Publishing Co- 1980.'s

(25) American Academy of Pediatrics. Cio.-ermnent ACtivities Riper& Arlington. Va., July 1980.

(26) Casey. P.. M. Sharp. and F. Lode- -Child-Health Supervision for Children Under 2 Years of Age: A

Review of its Content and Effectiveness:* Journal ofPediatrics 95: 1-9, July 1979.

(27) Starfieki. B. et al. "Psychosocial and Psychosomatic Diagnoses in Primary Care of Children.-

Pediatrics66: 2. August 1980. (28) Richmond. J. B. and J. Janie A Perspective on Primary Prevention in the Earl"st Years." In

Chiktren Today. pp. 2-6. May-June. 1980. (29) In addition to volume III of this report. see also volume IV: Dwyer. J. "Nutrition Education and

Information"; Dutton. P. "Children's Health Care: The Myth of Equal Access-; and, Leflcawitz. B.

and D. Andiulus. The Organization of Primary Health and Health-Related Preventive, Pxychisocial, and Support Services. for Children and Pregnant Women?" (Select Panel for the Promotion of

Child Health. Better Health for Our Cluldnat: A National Strategy, Vols 1U and IV. Washington.:

D.C.: U.S. Government Printing Office, 1981.) (30) Dutton. D. -Children's Health Care: 'The Myth of Equal Access." Lti Better Health for Our

Children: A National Strategy. Vol IV. 1981.

(31) Aday, L.A. and It. Andersen. Accesses Medical Care. Ann Arbor. Mich.: Health Administration

Press. 1.975.

(32) Lefkowitz. IL and D. Andress,- -The Organization of Primary Health and Health-Related

Preventive, Psychosocial. and Support Services for Children and Pregnant Women.- In Better

. Health for Our Children: A National Strange Vol IV, 1981.

(_".7) Statistics provided by the Children's Defense Fund. Washington D.C.. November 1980.

( re, The Economist 274(7126), March 29. 1980.

MID 67
(35) New York State Health Planning Authority. Unpublished data.

(36) Haggerty, R. J. and M. Grew. eds_ AmbillitoryPediaiiies Two Personal Health Care of Children

in the Office. Philadelphia. Pa.: W. B. Saunders. 1977.

(37) Facts that follow arc found us: Select Panel for the Promotion of Child Health.. Better Health for

Our Children: A National Strategy. Vol IL Washington. D.C.: U.S. Government Printing Office.

1981: U.S. Department of Health. Education. and Welfare. Public Health Service. Healthy People, The Surgeon General's Report on Health Promotion and Disease Prevention. pp. 43-44. 48.

Washington. D.C.: US. Government Printing Office, 1979: and Robert Wood Johnson Founda- non. Special Report Child Abuse: Slowly Answers Begin to Emeswe. Princeton. NJ.. February

1977.

(38 f :ice, for instance. Needleman_ H. L. et al. "Deficits in Psychologic and Classroom Performance of

Children with Elevated Dentine Lead Levels?' New England Journal of Medicine 300: 689-695.

1979.

(39) Brazeltoia. T. B. -Origins of Reciprocity: The Early Mother-Infant Interaction.- In Childhood

Psychopathology. S. Harmon and J. McDermott_ eds. New York: International University Press,

1979.

(40) Task Force on Pediatric Education. The Future of Pediatric Education. Evanston, III.: American

Academy of Pediatrics. 1978.

(41) U.S. Department of Commerce. Bureau of the Census. Characteristics of American Children and

Youth: 1976. CPS Series Pt_ 23. No. 66. Table 12 p. 18.

(42) U.S. Department of Health. Education. and Welfare. Office of Education. Progress Toward a Free

Appropriate Public Education. A Report to Congress on the Implementation of P.L. 94-142: The

Education for All Handicapped Children Act. Washington. D.C.: U.S. Government Printing Office,

January 1979.

(43) Hill. R. National Urban League. Testiniony presented to the Select Panel for the Promotion of

Child Health. Washington. D.C., January 1980.

(44) U.S. Department of Health, Education, and Welfare. Bureau of Commtmity Health Services, Public

Health Service. -State Health Agencies' Perspectives on Infant Mortality - Issues. Approaches, and Funding.- Responses to a survey conducted by the Association of State and Territorial Health

Officials. 1979.

t43) Porter. P. Chief of Pediatrics, Cambridge City Hospital. Cambridge. Mass. Personal cc-trununicahon. March 1960.

(46) Newberger. E. H.. C. M. Newberger. gmel. J. B. Richmond- -Child Health in America: Toward a.

Rational Public Policy.' Milbank Mensoribt Fund Quarterly. Summer 1976.

(47) Masnick. G. and M. J. Bane. The N-:..,n's Families: 1960-1990 Cambridge, Mass.: Joint Center

for Urban Studies of MIT and Harvard University, 1980.

(48) Lash. T. W.. H. Sigal. and D. Dudz:nski. Suite of the Child: New York City-11. New York:

Foundation for Child Development, Jule 1980.

(49) "America's Second Minority Comes of Age." The Economist 274 (7118): 39-44. February 2.1980.

(50) U.S. BUreau of Labor Statistics. -Marital and Family Characteristics of Workers. March 1977."

Special Labor Force Report 216. Washington. D.C.: BLS. 1978.

(51) U.S. Bureau of Labor Statistics. Perspectives on Working Women: A Databook. Bulletin 2080.

Washington, D.C.: BLS. 1980. (52) US. Bureau of Labor Statistics. Children of Working Mothers, March 1977. Special Labor Force

Report 217. Washington. D.C.: 1978. (53) Yankelovich. Skelly. and White, Inc. Family Health in an Era of Stress: The General Mills

American Family Report-1978-79. Minneapolis. Minn.: General Mills. 1979.

Medrich. E. and V. Rubin. "After- School Services in a Time of Lowered Expectations?' Children's

Time Study, School of Law (Boalt Call), Berkeley. Calif.: University of California, Berkeley.

Mirsoop-aphed, 19-i9.

(55) Bronfenbreniser, U. Who Cares for America's i....--hildrer7" In The Family-C-4u, It be Saved? V. C.

Vaughin and T. B. Brazelton, eds. Year Book Medical Publishers, 1976.

(56) Rutter. M. "Separation Eaperienceis: A New Look at an Old Topic.- Journal of Pediatrics 95:

147-154,1979.

(37) Compare, for example. the estimates _provided by two recent sources: (a) Senate Finance Committee. Mat tills Relating to Existing Federal Aograms' l'.zoviding or Financing Health Care

for Mothers and Children_ Washington. D.C.: US. Government Printing Office (CP 96-16). 1979: and (b) Jams. J. -The Legacy of the Past Two Decades: Implications for Child Health Programs

and Policies in the 80s." Paper presented at the Bush Center in Child Development and Social

Policy_ New Haven. Conn.: Yale University. May 2.1980. (58) Steiner. G The Children's Cause. Washington. Brookings Irstitution. 1976.

(54)

68
(59) Commence on Child Development Research and Public Policy. Natio. Research Council- Final .

Report: Awed for die. Study of the Fbhcy Formation Process Washington, D.C.: National

Academy of Salami. in poem

(60) Ikerziett. R. D. and L. S. Ban. "'Projecting Pediatric Practice Pancras.- Pediatrics 62: (Supplement:

part 2), October 1971.

(61) Porter, P. L. at aL "Municipal Child Health Services: A Tea-Year Reorganization.' atrics 58:

704-712, 1976.

(62) Office of the Governor. State of New York. C2213dren's Budget: 1980-81. Albiny. N.Y.: Executive

Office of the Governor. 1980.

(63) See.for example. findings contained in President's Reorganization Project, ReorgenizarionStudy of

Human Salvia= Programa: Intera n Report. Washington. D.C.: U.S. Office of Management and

Budget. July 1978.

(64) Kempc, C. H. Personal oonsznunication to the Select Panel for the Promotion of Child Health

uring Denver Hearing, September 27. 1979.

(65) Select Panel for the Promotion of Child Health_ Better Health for Our Chi'dren: A National

Strasqjy, Vol, Ii. Ill, and IV. Washington. D.C.: U.S. Government Printing Office. 1981

,C. 69
SECTION II

lEALTH MOTECTION

AND PROMOTION

CHAPTER 2

REDUCING ENVIRONMENTAL

RISKS

Hazards in our physical environment - --in the air we breathe, the water we drink, the food we eat, the materials we work with, the homes and

communities where we live, the cars we drive and the products we use

can profoundly affect the health of our children both before and after they

ars born. Many of these lutzards are the unanticipated and unwelcome byproducts of the industrial and technolOgical revolution which has

transformed our lives in the span of a single century. Some have been a

source of concern for years, others have only recently been recognized as problems and still more are likely to be identified in the years to come. The 1979 Surgeon General's Report on Health Promotion and Disease Prevention estimated that 20 percent of all mortality in the United States

is due to environmental factors. Risks in the physical environment bear especially heavily on infants and children because of their vulnerability as young, developing organisms, their increased sensitivity to certain substances, their small body weight and greater exposure to certain toxicants, and also because exposure to environmental risks may span many

decades.

Many of the factors in the environment which threaten health during pregnancy and childhood can be controlled at least to some extent. To

realize the importance of this point, one need only recall the major gains which already have been made as a result of public health knitiatives over

the past century. Improved sanitation, housing, and water! supplies have dramatically reduced the incidence of many infectious diseases. Food

safety has been greatly improved. Fluoridation hai reduced the hazard of dental caries for millions of Americans. These and other public health measures have been major success stories, and also have proven highly

cost effective.

However, after a period in the Nation's history when environmental health programs have accomplished much, certain old problems persist for particular subpopulations and some new problems have been crest iod or discovered which affect us all. Many of the old problems are varechially

vexing because effective prevertive strategies are at hand and simply hive not been fully implemented.

73
The new and newly discovered problems, while no less important in

their potential consequences, often are more complex in cause and less

easily addressed. These problems have been created in large part as

byproducts of the Nation's rapid industrial expansion, increased urbanization, and new technologies. Examples include threats to the fetus, the

newborn, and the child presented by chemicals in the environment, risks

posed by various drugs and food additives, and fertility-related radiation

risks in the workplace. The significance of these and similar environmental concerns is unquestioned, but national strategies for combating them

are only beginning zo emerge.

Issues of enviroxnental risk to children and pregnant women are very

complicated and in, some regards beyond the scope of the Panel's charge

from Congress. In this-report we cannot presume to analyze fully all of the

many and diverse factors in the physical environment contributing to

lifetime disease and disability, or all of the public policies designed to

influence these factors. Instead, we are forced to be selective, focusing

only on those aspects ofthe physical environment which (I) are known to

be the major direct causes of death and disability among infants, children,

and adolescents, or (2) exert a strong influence during pregnancy and

childhood which is known or presumed to have major consequences for

health later in life. This approach reflects the current profile of

demonstrable health risks to children and pregnant women. Ir. some

regards it will undoubtedly be superseded, or modified in emphasis,

during the coming decade as new risks come to light and new technologies

are developed to combat them.

Although children and pregnant women have unique suscepubilitiei

which make it important to consider them separately from the rest of the

population, we also acknowledge a certain inevitable artificiality in

focusing only on these groups. environmental health concerns apply

to the entire population, not just unborn and youngest members We

believe, however, that it is both feasible and highly desirable for the

Nation to develc-p a coherent health policy for mothers and children

which includes as one central component a strong emphasis on environmental health. In recent years, public health and environtry metal protection

policies often have tended to evolve separately from 'maternal and child

health policy.. This form of fragmentation, which has potentially serious

consequences, should be combatted both conceptually and in the

organization of health-related programs and policies in the future.

THE MAJOR HEALTH THREATS

Our review of the evidence on environmental bards to mothers and

children suggests that there are four domains of risk which deserve special

attention in the coming decade. We make this judgment on the basis of

the two criteria mentioned above, and also because we believe that in each

of these four domains much can be done with existing knowledge and

technology to prevent or mitigate negative health outcomes. Citiiens and

74
policymakers have an effective

apply. The four domain Accidents of 2 tr,

special emphd: home:

Chemical and raaia ion risks to the fetus, the infant and the ,child, with attention to the dangers of toxic wastes, pesticides, lead, and

other pollutants, as well as X-rays. Hazards posed by drugs and foods, with particular focus on

nonprescriptien drugs, food additives, and substances presenting

special risks during pregnancy. Problems caused by inadequate or unhealthful water supplies, with attention to the need for wider fluoridation, potable water in

all homes, and adequate sanitation. These topics are analyzed in the sections which follow. Several general pints emerged in Panel discussion of health protection

strategies which cut across all of what follows. These we mention at the

outset:

(1) The evidence suggests that many kinds of injuries and health problems can be more economically and more effectively

reduced by changing environments than by trying to change behavior directly. Often the most effective strategies are those

that work automatically, without action on the part of the person being protected (e.g., automatic passenger restraints in cars). This does not imply that education and the sharing of information are unimportant. Strategies for effective change almost always involve educational elements as well as structural changes

in the environment. However, in many areas of risk reduction, education alone is not sufficient to bring about desired results. As or< expert consultant to the Panel wryly observed, it does no

good to enjoin citizens to jog if the only place they can run is on

a city street right behind a diesel bus. 2) Strategies for health protection should not be automatically

equated with regulatory action. Although some of the most effective policies to reduce environmental risk have involved

regulation, many other approaches involving both pr. . to arid

public effort and collaboration have shown positive :::suits. Indeed, few serious hazards admit of purely regulatory solutions. Most are more complicated, requiring multiple strategies and the work of diverse groups to overcome them. (3) Cost-benefit reasoning has become a central component in all policy analysis relating to environmental risks. The Panel recognizes the need for-such analysis, but the cost-benefit factors

frequently considered in evaluations of proposed or actual

interventions to reduce environmental risks must place adequate value on the qualityas well ..ts the economicsof life and

health_ This is especially true for interventions affecting children. Otherwise cost-benefit analysis presents in the guise al' rationality an essentially irrational approach to public policy_

and varied repertoire of inst...crnents to

infancy, childhood and adolescence, with

.)tor vehicle accidents and those in the

f

75
(4) One important contribution which policymakers can make is to provide citizens the information and the means to assess for

themselves the magnitude of environmental risks. This theme is

also expressed in the chapters which follow on improving

nutrition and other health-related behavior. Much confusion

exists at present, resulting in predictable anxieties among parents and other citizens, because it is hard to know what is truly

harmful and what is not, and to calculate personal risk in the

context of myriad daily activities. While policymakers should not be expected to offer a fine-grained analysis of comparative

risksan undertaking which would prove impossibly complicated in any eventthey should routinely provide clear statements

f_-nabling parents to understand the general magnitude of risks

and the probability of negative health outcomes. (5) Because risk is inherent in all human activity, and learning, to

cope with risk is a very important part of growing up, it is

simplistic and unwise to fashion policies which are designed only

to insulate yoilng people from hazards. Instead, children and

adolescents must learn, in developmentally appropriate ways, how to manage risks in their own lives and make prudent choices. Introducing children to sensiMe patterns of decisionmaking is a challenge to parents, teac-lers. health care providers

and many others who influence the thinking of young people. It

is a!so a challenge to all those who structure the environments in

which children live and play. (6) Finally, if Federalpolicy is to continue to play an important role

in protecting the health of children and pregnant women, various

agencies will need to strengthen considerably their

cooraination with one another over the coming decade. Health

protection responsibilities are assigned to numerous units within

the Department of Health and Human Services (DHHS), including the Food and Drug Administration, Centers for

Disease Control, National Institute for Occupational Safety and

Health, National Institute of Environmental Health Sciences,

National Cancer Institute, and National Institute of Child

Health and Human Development. Beyond DHHS there exist

many relevant regulatory and research efforts at the Environ- mental Protection Agency, the Department of Labor's Occupational Safety and Health Administration, the Consumer Product

Safety Commission, the Lepartment ofTransportation's National Highway Traffic Safety Administration, the Department of

Transportation's Bureau of Alcohol, Tobacco and Firearms, the

Federal Trade Commission, and the Department of Agriculture's

Food Quality Safety Service. One reason the Nation still

lacks a cohesivt. k,olicy for the health protection of children and

pregnant women is the complexity inherent in trying to understand and coordinate efforts across these disparate entities. In

recent years, however, there have been encouraging indications

that such coordination is possible and is sought increasingly by

the agencies themselves. Various interagency policies are men76
tioned in the sections which follow. These deserve to be

reinforced and further developed in the coming decade.

ACCIDENT PREVENTION

Accidents of all kinds are the greatest single cause of death and

disability among children. Accidents alone account for approximately 40 percent of all deaths among those 14 years old, and 50 percent among

children and youth 5-14. Motor vehicle accidents cause a major proportion of these fatalities, while the rest are attributable to such factors ay. burns, falls and drownings, which usually take place in the home or neighborhood. Although fatal accident rates for children have declined over the past 50 years, these rates have not decreased as significantly as those for other causes of childhood mortality. In the case of motor vehicle deaths, the

rates have decreased only somewhat for children under 14 and have

increased significantly for older teenagers: Serious infectious diseases have been combatted much more, effectively during the same period, with the

result that they have become less important, and accidents more

important, as factors in the overall profile of child health risk. When motor vehicle and other accidents are 'combined, the United States is

second only to Canada among ;0 Western industrialized nations in its rate of accidental deaths among children. Before the Nation can again

experience a significant decline in childhood mortality, renewed efforts must be made to define and carry out effettive- accident prevention. policies.

Motor 1-r Safety

The facts about child motor vehicle accidents are grim indeed: Fully one-fifth of all child deaths can be attributed to automobile accidents each year, including the deaths of more than 1,000

children who are under age 5. More than 46,000 1-4-year-olds are seriously injured in auto

accidents each year ( I ). Motor vehicle accidents account for over half the total serious

accidents experienced by children. Teenagershaye the highest motor veaicle death rate of any group, accounting for 20 pet-cent of all motor vehicle deaths' in 1978 (2). SU.ch statistics, if reported from some distant battlefield, would make the,_

country sit up and take notice. It is shocking that they reflect routine

realities on American highways. Various strategies for reducing auto fatalitites clearly could make a difference if fully implemented. Use of seat belts and car seats has

received particular attention because appropriate use could cut in half the

likelihood of death or serious injury in an accident. Yet fewer-than one in

five drivers presently uses a seat belt, and more than 90 percent of children under age 10 are unrestrained when traveling in c=s. Even when parent

77
All ages

0-19

0-4

5-9

10-14

15-19

Accidents oisonin and violence-31.2

cc' ts3.5

Accidents, poisoning, and violence-9.5

Accidents-8.3 aims

90.5'

Accidents, poisoning, and violence-52.0 arlimmomm Accidents-49.0

Accidents, and violence -58.8 ce-58.8

Accidents-51.9 oriINIIIMMMIII -. 23.4

rw. 11111111111

Accidents, poisoning, and violence-75.5

Accidents-56.6 IMMINN111=1111111

Motor

vehicle

accidents

6.0

Accidental

drowning

I Other

accidents

All other

causes

Percent of death of children and youths under 20 years of age due to

accidents, poisonings, and violence: United States, 1975
drivers are using their. own seat belts, more than 75 percent of children are not restrained (3). Passenger safety systems are as important for infants and very young

children as they are for older children In a recent public service

advertisement, the Cielieral Motors Ct.,.-i--:-Jration reminded parents that in

a 30-mph cL.Ilision. a 10-pound child can exert a 300-pound force against the parent's grip, making it almost impossible to hold the child safely on a

lap even if the parent is wearing a seat belt. When traveling unrestrained, `tints or young children_ are often killed in accidents that adult passengers survive. Recent campaigns :o educate the public about the importance of child

restraint systems and to increase their use have been initiated no' only by

auto manufacturers and traffic safety authorities, but also by health care providers. The American Academy of Pediatlie-shas launched a major accident prevention campaign urging all general pediatricians to recom- mend car seats at a prenatal visit, promote safety belt use by pregnant women, include counseling about infant and c' I car safety seats in office visits, furnish parents with a list of appro% car seats, and establish

"loan-a-seat; and seat recycling programs (4). i nese and other education- al efforts aft positive steps, which gradually should create an improved

climate of public awareness. In addition, the Panel believes there would be value in periodic pumper sticker campaigns to remind parents of the need

to use child pagsenger restraints. In the long run. however, it is prob;::ble that motor vehicle injuries will be reduced most effectively by changing the characteristics of motor

vehicles themselves. One good way to do this is. to require that all new

passenger vehicles be manufactured with passive restraint systems automatic seat belts or air bagsand also incorporate other structural

design features which reduce the chances of death or injury on impact.

The Insurance Institute for Highw y Safety has estimated, for example, that nearly 39.000 persons who died on the Nation's highways between

1975 and 1978 might have lived had vehicles been equipped with air bags

(5).

Federal Initiatives

The Panel notes with enthusiasm two recent Federal policy initiatives

which could substantially increase the safety of autos for all citizens,

chldren and pregnant women among thgrn, over the coming decade. These are the rulings by the Secretary of Transportation that all new cars

must be equippod by 1983 with devices automatically protecting front-seat

passengers, and the development by the National Highway Traffic Safety Administration (N HTSA) of prototype vehicles incorporating innovative

safety technology. Timely implementation of the Secretary's ruling deserves very high priority, as does further development . of safety

standards governing auto engineering and interior design based on the

N HTSA prototypes. In addition to these initiatives, we believe the unique vulnerability of

infants and children requires that NHTSA and the auto industry intensify

their etiorui to develop special performance standards for child passenger

79
safety. This effort should involve a review of vehicle interior design with

particular attention to dangers for children. It also should involve a review

of automatic restraint systems to determine their effectiveness for infants

and young children and, if necessary, the design and' requirement of

special systems of automatic restraint for these groups. One important step

in the right direction was the 1979 NHTSA standard requiring that child

car seats meet certain structural criteria and that instructions on their use

be permanently posted on the restraints themselves (6).

State Action

Because many pects of highwa_ safety are the responsibility of the

Nation's States am.' localities, it would be misleading to equate highway

safety policy with Fe,Jeral polity alone. Several States have adopted or are considering new laws requiring that infants and young children be placed

in car seats or other safety devices while traveling in motor vehicles. Tennessee adopted such a law in 1977, defining as a misdemeanor the

failure to use an appropriate restraint with any child under 4 years of age

( 7): Implementation of the law has been combined with a major public

information campaign. Effects have yet to be Fully evaluated, but the new

legislation :s known to have resulted in increased car seat use. Reductions

in child mortality may not be as great as hoped, however, because Tennessee continues to permit infants and young children in autos to be

held in the arms of an adult (8). The Tennessee law is an example of a wide range of innovative policies

for child motor vehicle safety which should be promoted by the States. At

present, a modest component of NHTSA grants to the States is set aside

for occupant protection programs. This percentage could be increased,

and some part of it earmarked for innovative child safety programs. One

typical problem which might be addressed by State demonstration

projects-is the need for improved safety systems in school buses and other

conveyances for groups of children. Other policies involving close Federal-State collaboration can have a

very positive, though indirect, effect in reducing child auto deaths and

injuries. One is simply to maintain and enforce the national 55-mph speed

limit. A significant reduct;on in traffic fatalities was observed after the

new speed limit was adopted in 1974 (from 54,052 in 1973 to 44,525 in

1975). However, traffic deaths are climbing again (to 51,083 in 1979) as

enforcement has lapsed in some States. Safety benefits justify comiquance

of the 55-mph limit regardless of whether energy savings prove conilequential in the long run. Highway design modifications also can help reduce both the number

and the severity of accidents. More than a third of all motor vehicle deaths

and severe injuries occur when vehicles leave the road and strike rigid objectstrees, utility poles, bridge abutments. a-1 the like (8). Removal

of such objects where possible. modification of others to break or yield on

impact, and the placement of energy-absorbing materials between such

objects and the road could signif ntly redu.e the toll of highway

accidents. Similarly, traffic safety features can be built into plans for the

redevelopment of urban streets and recreation areas, where child

pedestrian deaths are most likely to occur.

so
Another obvious way to reduce risk is by individual decisions among parents to travel by public transportation and have child and adolescent family members do likewise. In 1978, 90 people died in commercial bitt.es, while 28,000 were killed in passenger cars (2).

Two-Wbeel Motor Vehicles

Motorcycles, while used by a smaller group of young drivers, are a much more dangerous mode of transportation than cars. Because for some youths the motorcycle is not only a means of transportation but a symbol of freedomand at times rebellionthe high risks involved seldom act as a serious deterrent to use. According to the Motorcycle Safety Foundation, helmets are one effective means of reducing fatalities and serious

injuries re r-Ating from motorcycle accidents (9). Not all States have mandatory aelmet-use laws, however, and in States without them, helmets arc worn only about 50 percent of the time. Since 1976, 27 States have repealed or weakened their helmet use laws. In the same period, motorcycle fatalities have increased by nearly 48

percent even though new motorcycle registrations have increases by less

than 1 percent. Two to four times as,majiy head injuries are sustained by unhelmeted cyclists as by those wearing helmets. Many of these injuries

require extensive medical care and some involve long-term disability. We believe the high public cost of motorcycle injuries should make helmet safety. more than a matter of individual choice. The risks of mopeds and minibikes also can be considerable, not only to

the operators but to auto drivers who may not expect to find such vehicles

in the streets. The use of moped and minibikes is relatively new in the United States. Mopeds were rare prior to 1975 but it is now estimated that more than 550,000 are being used (10). Data on moped accidents show

that in 1979 these. vehicles accounted for 3,780 injuries to children upder age 15. Moreover, two-thirds of moped operators involved in accidents in

this country were under age 25 (11)_ Although the Department of Transportation regulates the construction of mopeds, no Federal Authority regulates the construction or use of minibikes. It is comrnor4 thought that these vehicles are intended for use

"off the road." Yet, the minibike is capable of traveling up to 50 mph and

is constructed in such a way that a 4- car-old child can operate it. Anyone can purchase or ride a rninibike, and they frequently are stocked by local

toy departments. It seems only reasonable, if mopeds and minibikes are in fact used on

the roads, that operators be licensed by the States and be required to wear helmets. Because reporting procedures so often confuse mopeds and minibikes with motorcycles and bicycles, definitions also need to be

clarified so that accurate accident and injury data can be collected.

Alcohol Use

Finally, it is well known thatrithe greatest individual risk factor for fatal car accidents is alcohol use. This is a problem for all ages, but of special concern with adolescent drivers_ Drivers 18 years of age and younger were

involved in 7,862 fatal vehicle accidents in 1979, and it is estimated that
alcohol was a factor in more than half( Although the Paro-..-1 does not

wish to recommend that the age of licensure for motor vehicle operators

be raised to 18, it is worth noting that this step alone would have a major

impact in educing serious accidents. More equitable, we believe, are

policies which improve driver education and impose strict penalties for drunk driving among teenagers, such as the mandatory revocation of

licenses and mandatory attendance in group or individual counseling

programs for youthful first offenders.

In summary, the Panel strongly recommends that parents, schools,

corporate and labor leaders, health care persor. c , private voluntary

organizations and public policymakers work independently and collaboratively to bring about a major improvement in motor vehicle safety for

children and pregnant women_ An adequate national policy wi.", have

man L. elements, including as an absolute minimum the following:

Health care p; -riders, community-based volunteer organiz o?ons,

automobile de. Ts and insurance companies should encourage

the use of any enobile rest 'nt systems for children from early

infancy on. Manufacturers should make further efforts to develop inexpensive

and effective child restraint systems for infants and small children,

and such systems should routinely be available from auto dealers

as an option for new car buyers. The National Highway Traffic Safety Administration should take

three steps to strengthen child motor vel...cle safety: (a) resist

further delay in the deadline for equipping all new cars with

passive restraints that automatically protect front seat passengers;

(b) unless auto manufacturers act within the next 5'years to take

appropriate action voluntarily, proceed with mandatory standards

for incorporating proven safety technology into ..vehicle designs,

including the.: engineering features demonstrated in NHTSA

prototype automobiles; and (c) intensify efforts in the coming 5

years to arrive at adequate special performance standards for

child passenger safety. State authorities should take the following steps: (a) review

carefully the results of recent experience in States with laws

mandating use of child restraints, and adopt similar laws if

positive effects are demonstrated; (b) require by law that car

rental and leasing agencies routinely make child car seats

available to their customers without extra charge; (c) support and

vigorously enforce the national 55-mph speed limit; (d) enact and

enforce mandatory helmet-use laws for motorcyclists and require

licensing and helmet use for moped and minibike operators, and

(e) initiate major publicly financed bum-)er sticker campaigns and

other media campaign:: to alert parents to the importance of child

passenger restraints in automobiles.

Home and Neighborhood Safety

At hearings in Denver, Atlanta, and Washington, D.C., the Panel heard

testimony urging special attention to the implications which home and

82 . (141 tI
neighborhood envir3nmenis may have for child safety and healthy child

development. The homes and neighborhoods where families live are not always designed with children in mind, and may be hazardous to them. One reflection of this is the number of accidental injuries and deaths in

the home and neighborhood from burns, falls, drownings, poisonings, firearms, and other sources. These account for approximately 11,000

deaths among children and teenagers each year, roughly as many as die in motor vehicle accidents. Home and neighborhood safety can only be improved by a strategy

combining regulatory policies, new incentives for home builders and product manufacturers, community action programs, and education

aimed at better informing parents and children about sources of risk.

Hoene Accidents

Half of all childhood injuries occur in the home --from fires, scalds, falls, poisonings, and unsafe or improperly used products. Although such

accidents result from a combination of environmental and behavioral

factors, some Of the most effectfve strategies for reducing home accidents are those that change the structural characteristics of dwelling units and

( create safer products. Beyause burns from fires are such a serious factor in childhood death

and injury, accounting ft. 10 percent of accidental deaths among

youngsters 0-14 years of age (13) special attention mr_st be given to

designing, building, and refurbishing homes to reduce the likelihood of

fires. The use of less flammable constri.ction materials, the provision of adequate evacuation routes, the elimination of open gas heaters and the use of automatic thermostats on hot water heaters to prevent excessive water temperatures can all be helpful. The upgrading of local building

codes, incentives from the insurance industry and voluntary. efforts by manufacturerssuch as the recent establishment of protective standards by water heater manufacturerscan reduce the likelihood of fires or scalding accidents in the home. Another approach of well-established

value is the requirement that smoke and fire detectors be installed in all residential units, a step that has already been taken in a number of communities around the Nation.

Tap water scalds are a particularly serious problem for very young

children: An estimated 5,400 injuries from tap water scalds were treated in hospital emergency rooms in 1979, and almost one-third of these injuries were to children age 2 and younger (14). Recent voluntary standards established by water beater manufacturers, prompted by concern from the Consumer Product Safety Commission, give reason for optimism that new

hot water systems will not permit excessive temperatures. This experiment should be monitored closely and its effectiveness assessed. Another initiative. worthy of note, this one educational, is the media

campaign of the National Fire Administration which teaches children fire

safety via television programs such as Sesame Street and by programs in

schools (15). This campaign is intended in part to ,discourage juvenile fire

setting, which may begin as play or mischief and end in tragedy. Many sensible policies regarding new home construction are more difficult or costly to implement for existing homes, especially when

83
housing is substandard. Therefore. it, is not surprising that disproportionate numbers of low-income children are involved in home accidents, since

they are most likely to live in old and substandard housing in central cities

and rural areas. Although it is nIsktx.listic in the short term to

contemplate replacement of all substari homes, much can be done to

improve the safety of existing structures and to educate parents and child

caretakers regarding elements of risk. Community efforts- to reduce safety

hazards, when fully implemented. have shown considerable success. A

burn prevention project initiated by the Centers for Disease Control in six

counties of Missouri resulted in a 43 percent reduction in fire deaths

during a 3-year period ( 16). Likewise, when New York City amended its

health code to require window guards in all apartments where young

children reside, a significant reduction in falls from windows resulted (17).

Asbestos

Another major health hazard in many communities stems from the

widespread presence of asbestos in homes, schools, and day care centers.

as well as roads, driveways, and playgrounds. Fxposure to asbestos

increases the risk of developin:, lung. stomach, esophageal, and colon

cancer, as well as asbesteosis, a crippling lung disease. Recently:especial attention has been directed at indoor exposure to .asbestos, which was

used in the construction of many homes, and other buildings from

the mid-1940's until the early 1970's. The Environmental Protection

Agency banned its use in fireproofing in 1973, and in pipe insulation in

1975. However, ventilation and heating systems of many older buildings

circulate the asbestos fibers which pass into the air from ceilings and walls.

It is estimated that an asbestos problem exists in some 10-45 percent of

the Nation's 100.000 schools, and a number of Federal agencies are

currently engaged in an interagency iniziative to clarify the extent of the

threat and to diminish it. This initiative needs to be broadened to include

hospitals, day care centers, and other structures used by children.

Among other potentially dangeroi. s building materials, lead-based paint

remains a problem in many older and is discussed below.

Household Products

The Consumer Product Safety Commission estimates there are about 10

million product-related accidents each year, some 38 percent of which

involve children (18). In collaboration with the American Academy of

Pediatrics and other grOups, the Commission has established a series -of

standards, some voluntary and some mandatory, governing child product

safety. Standards cover improved packaging, testing, and development of

protective devices, inspection procedures prior to marketing, information

to consumers, and monitoring of products in use. - Commission investigations and rulings have involved such areas as toy

construction, flammable sleepware, bicycle and crib design, and electrical

equipment. A notable success has been the significant reduction (about 30

percent) in child poisonings that followed the requirement for safety lops

on all containers of prescription and over-the-c,-)untier drugs. This

84

()
requirement could Abe extended to other common household substances such as cleansers and insecticides. Success has also been encountered in

the case of crib-related injuries. v "'ere design regulations and community

.iformation campaigns haye resulted in a 44-percent reduction of injuries. treated in hospital emergency rooms (19). Vowever, regulatory strategies can only be effective when combined with good judgment by parents and child caretakers. Electrical' devices

toys, and household implements can never be'" rendered fully accident- proof. Parents and child caretakers need to imderstand the most likely

causes of home product accidents so they can make more informed

decisions about which products to keep from children's reach and which plaP activities to discOuiage. One way to . increase parent and child

awareness is to involve them directly in home safety inspections and other consciousness-raising activities. Such efforts could be initiated by local agencies and organizationsschools, fire departments, Boy and Girl Scout troops, and otherswith a modest but targeted demonstration

program of Federal incentive grants. In addition, it has been proposed

that a universal symbol of danger be designed specifically to communicate a danger warning to children aged 2 and older (20). Such a symbol might be developed under the leadership of Federal preventive health authorities and the Consumer Pi-oduct Safety Commission, with tfi involvement of

child development specialists, the business community, and the media.

Filladguns

One type of "product" found in about 20 percent of American

households is responsible for a virtual epidemic of deaths and injuries among children and the youththe handgun. Too often, -the- presence of a

handgun in the home leads to accidental misuse by children even when

adults intend that it be kept solely for sport or self-defense. In 1977, gun

accidents were the fifth-ranking cause of accidental death among children

under 15. Firearmsprimari handgunsare the most frequently used weapon

for suicide and hoLni'.ide, both of which are on the increase among young people. Firearms are used four times as often as poison, the next most

common method of committing suicide, and firearm suicides have been

increasing at a much faster ,rate than suicides by other means. Homicides

account for just over 10 percent of all deaths among adolescents and

young adults, although the figure is lower (7 percent) for whites and higher (30 per :ent) for blacks in this age group. Some 25 percent of the 21,000

Americans who were the 'victims of homicide in 1977 were aged 15-24,

placing that group at greater risk than the rest of the population. The deaths of so many young people represent a tragic waste of human

potential_ 77-e homicide rate in the United States is far greater than that of most

other industrialized nations. Our 1974 rate of 10.2 homicides per 100,000

people compared with a rate of only 0.9 for France, 1.0 for Great Britain,

1.1 for Sweden, and 1.3 for Japan. Easy access to firearms appears to be a prime contributor to the appalling U.S. murder rate. From 1960 to 1974, handgun sales in this country quadrupled to more than 6 million a year.

85
During that same period, the homicide rate jumped frcirn 4.7 per 100.000

to 10.2 for the population as a whole, and from 5.9 per 100,000 to 14.2 for

young people aged 15-24 (2 1 ). Evidence from England and elsewhere shows that prohibiting the

possesgion of handguns dramatically reduces the number of shooting

deaths and injuries, especially those unrelated to criminal assaults (22).

The Panel is aware of fierce political controversy in this country about any - form of gun control, and recognizes the strength of the organized firearms

lobby. Nonetheless, the stakes for the Nation's children are so high that

nothing short of a total ban on the sale of handguns, with exemptions for

persons such as police, military personnel, and pistol- clu'os, seems

reasonable. We realize such a ban is not likely to prove politically feasible

in the short term. One useful, less controversial step would be to mandate

the development of 9hild and youth protection standards relating to gun

safety. These stand_ ds might be jointly developed by a variety of interest

groups, including the National Rifle Association, U.S. Conference of Mayors. gun manufacturers, and others. The effects of such a safety campaign on child and adolesc,:nt death rates should be carefully

assessed. Failure to reduce the incidence of youthful handgur. deaths by

more than half should be regarded as further impetus for an overall ban.

To summarize. - Panel recommends that public authorities, corporate and labor leade.- professional organizations, private voluntary organizations, schools. aa.., parents develop and promote broad policies of home

and community accident prevention for children. Specific actions should

include at least the following: All local governments should upgrade housing and bhilding codes

to ensure that dwellings are constructed with less flammable

materials, complete fire or smoke detection systems, adequate

evacuation routes, no open gas heaters, and hot water heaters with

automatic thermostats preventing excessive temperatures. Furthermore, State governments (through insurance commissioners)

and the Federal Government should provide incentives for such

structural home safety features. Current Federal interagency-, efforts to reduce child exposure to

asbestos in homes and schools should be fully implemented, and

broadened to include hospals, day caret centers. playgrounds,

and other structures used by children. .The Consumer Product -Safety Commission should develops, policy requiting child-proof caps on all common toxic' household

substances, sucleas cleansers, insecticides, and the like.

Local and State governments, businesses, professional, civic, and

religious groupS should develop community campaigns to raise the

consciousness tot- parents- and children about accident prevention

and to provide specific information on how to minimize childhood

-& accidents. Such campaigns should promote the direct inv vement of children in safety inspections and other activities sponsored by

local agencies, including fire and health departments. The Departments of Health and Human Services should promote

the development and dissemination of a universal _c.`

86
danger that can be recognized and understood by children age 2

and older.

Congress should enact legislation banning the manufacture and

sale of handguns, with exertions for police, military personnel. and pistol clubs. Until such legislation is passed, Congress should mandate the development and aggressive dissemination of child

and adolescent protection standards for gun safety. with particular attention to prevention of accidents and misuse among children

and teenagers.

Recreational Opportunities and Sport Satiety

Communities must not only help to create physical conditions that will reduce injury and waste of human life, but also structure opportunities for children and youth to engage relatively safely in various forms of

recreation and exploration which are a natural part of learning and

development Much of life requiresformed risk-taking, and many types of physical play and experimentatiOn among young people are essential. (More is said about this topic in chapter 3.) Recreation, in the form of organized athletics and individual sport, is a domain where:: physical risk is often instructive if assumed under

controlled circtrigstances. Problems arise when appropriate opportunities

for physical activity are not available, and youthful energies are directed

into areas where misjudgment may result in serious injury or adverse

consequences for others. Problems can also develop from sport activities when young people are not taught safety measures and ways to prevent

injuries as a part of their training. Urban children and youth experience particular difficulties in finding

adequate recreational facilities and opportunities at reasonable cost. Rapid urbanization, haphazard city planning, and short-sighted civic policies have in some cases turned urban environments into areas of

unrelenting steel, cement. and glass without adequate public parks, playgrounds, gymnasiums, pools, or playing fields. Even where such

facilities are available they often are cramped, a factor which itself

contributes to accidents. In football, a high percentage of accidents could

be prevented by establishing an obstacle-free zone around the playing

field. Appropriate design and use of safety equipment for contact-Sports also is important, and well worth the modest public expenditure required.

Water sports are a signifrc:ant factor in child ac is each year. Many drowning deaths could be averted by better commu rules regarding

swimming pools and boat use, =and by more drown-proofing programs Many youthful drowning victims are intoxicated at time of death, linking

this type of accident, like so many others, to substance abuse. In general. the Panel recommends that provision of adequate recreational facilities, space, and programs be seen as an integral part of a broad

national accident prevention strategy. Recreational facilities, space, and

programs should be designed to promote appropriate exercise for ail

children and youth, and to minimize accidental injuries.

87
Urban planners and architects should routinely be required to

consider the impact on child recreational opportunities of new

urban construction. Recreational impact on children and youth

should become sin element of all environmental impact statements

for constructior. in urban areas.

Boards of edu cation should consider physical education and

recreational opportunities as essential components of schooling, and should work- with local governments and parents to ensure

adequate recreatic:nal space and activities for school-age children

both in and out of szthool, Organized sports activities for children and youth should be properly supervised, protective equipment should be used appro- priately, and young people slit be taught sports safety measures as part of their training. Greater atterr:ion and financial support should be given to the development of improved safety equipment for all contact sports. Swimming and water survival classes should be expanded, and State laws and local ordinances should be strengthened regarding

the safe use of swimming pools and boats.

Toward a Federal and State Accident Prevention Strategy

Numerous Federal agencies have authority over some part of home and neighborhood accident control, but the Centers for Disease Control candidly state that injuri. s apart from those related to consumer products are not being addressed effectively at present by any agency of the Federal Government (23). This lack of Federal leadership is reflected in

turn in States and localities, where health and environmental protection

agencies are iiralciit' g only limited efforts to develop accident prevention

strategies. State' and local health departments, which have traditionally been responsible for accident prevention, have lost resources and are presently attempting to redefine their missions. The Association of State

and Territorial Health Officers reports that in 1979, only nine State health

agencies had identifiable programs directed at controlling accidents, injuries, and poisonings. Such programs consistently involved less than I percent of the total agency budgets (24). A broad Federal child accident prevention strategy should be developed by maternal and child health authorities within the Department of Health

and Hu =an Services, acting in concert with other areas of the Department and other relevant Federal agencies, with regional, State, and local authorities, and with parents. This strategy should be designed' so that a wide range of Federal programs and policies incorpora*e an emphasis on

child accident prevention. Requirements for full implementation of the

new strategy are: The establishment, nationally and within each State or region, of a

sophisticated and policy-oriented epidemiological data base on

accidents, injuries, and poisonings, to aid in t27geting resources and programs

88
An increase in the capacity of centralized accident and poison

control centers to provide prompt and accurate information to

parents and health personnel, through the establishment of a

computerized information network and other appropriate strategies. Incorporation of accident prevention as an objective of Emergency Medical Care networks. New resources should be provided by

Congress for such efforts under this legislation. Careful assessment of the effectiveness of the accident control

demonstration projects recently established by the Bureau of

Community Health Services, and a congressional charge to the

Secretary of Health and Human Services to expand to other sites

and regions those components of the demonstrations which prove

effective.

The inclusion of accident prevention activities as an integral part

of all primary health care programs supported with Federal funds.

CHEMICALS AND RADIATION

Among the most worrisome, pervasive, and complex environmental

health hazards are the numerous chemicals and sources of radiation to

which Americans are exposed. Such exposure can take place at home, at

work, in the neighborhoodeven in the hospital. Hazards can arise in the

manufacture, formulation, use, transportation, and disposal of toxic

chemicals; in the manufacture and application of pesticides; in the

administration of drugs and radiation in medical care; in the preservation

and coloring of food; and in myriad other ways we may not even

recognize. Toxic chemicals and radiation pose special dangers to pregnant women

and to children. Exposure during pregnancy can result in spontaneous

abortions, stillbirths, birth defects, and genetic defects. More than 20

agents are known to be associated with human birth defects, and many

times that number cause birth defects in laboratory animals (21). Young

children can suffer growth retardation, reduced immunological response.

minimal brain damage, and leukemia as well as acute health erfects such

as poisoning, diarrhea, and convulsions as a result of exposure to some

chemicals. The reproductive capacity of both men and women can be

affected by exposure to certain agents, and the effects of such exposure

can be transmitted to future generations if the mutation of egg or sperm

cells is caused in either parent. Enyironmental agents contribute directly or indirectly to virtually all of

the major chronic diseases which plague modern American society.

Childhood exposure to such agents can be a significant determinant of

adult health status because it takes at least 20 years for the full effects of

many compounds to become apparent Cancer is The most dreaded and

widely publicized of the chronic diseases which may be caused largely by

environmental factors. The National Cancer Institute currently lists at

least 20 chemicals and compounds for which there is epidemiological

89
evidence of human cancer causation; among them are asbestos, benzene,

Vinyl chloride, and arsenic. More than 2,300 specific chemicals are

suspected carcinogens. Other major health problems in which environmental agents have been implicated include arteriosclerosis, heart disease,

pertension, emphysema, chronic bronchitis, kidney disease, liver disease, diabetes, anemia, neurologic and behavioral disorders, and immunologic diseAes (21). More than 60,000 chemical compounds are commercially produced,

with about 1,000 new ones introduced each year. As their use in industry

and farming has expanded, these chemicals have made their way into our

food and water supplies. Several aspects of their use and disposal merit

special concern.

Chemical Wastes

For years now, toxic chemical wastes have been dumped :ato the

Nation's lakes and rivers or buried in community disposal sites with little

if any regulatory supervision. The Environmental Protection Agency.

(EPA) estimates that 90 percent of the Nation's hazardous wastes are still

being disposed of by environmentally unsound methods (25), despite the

enormous public concern stirred by the discovery that chemical leakage

from the Love Canal disposal site in New York State was exposing nearby

residents to major health risks. Significantly, one of the first indicators

that something was amiss at Love Canal came from the hi her than

normal number of spontaneous abortions recorded itret:ing pregnant

women in the area. An association with congenital abnormalities is also

suspected. One lesson is that the consequences of improper toxic waste

disposal may be gravest for the unborn and the young. Another is that

improved perinatal epidemiology and surveillance can become a major

public health toorfor those monitoring chemical risks.

The EPA has identified some 30,000 waste disposal areas in the Nation

as presenting potential health problems. Of the 645 sites it has investigated

thus far, the agency has found more than 100 which it says pose a serious

threat to approximately 600,000 citizens (26).

EPA has recently been granted regulatory authority over new toxic

waste disposal sites and has set standards requiring all those dumping

waste into the environment to keep records on precisely what is being

dumped and where. But, thus far there has no adequate action to

reduce dump site hazards because the EPA has no funds for this purpose

and the focus of its regulatory authority is on new sites rather than old

ones. Cleanup of old dump sites and mo.Aitoring of all such sites is

essential Alternative methods of disposal also should be studied for the

future, including incineration of waste, resource recovery, and recycling.

Pesticides

Pesticides can pose. a health hazard to workers engaged in the

manufacture and application of such substances, to families who live near

90 9
or work in sprayed areas, and to consumers who eat foods containing

pesticide residues. The insecticide Kepone, for instance, not only caused

serious neurologic and reproductive effects in workers at the Virginia

plant where it was manufactured but also contaminated countless

thousands of fish as it spread, after discharge from the factory, in

unknown quantities along the James River. Chesapeake Bay, and Atlantic

Ocean.

The accumulation of certain chemicals in tissues means that exposure to

very small amounts over sufficient time can result in the buildup of toxic

doses. A number of fat-soluble pesticide chemicals have been banned

from use by the EPA, such as DDT, Aldrin, and Dieldrin. Nevertheless,

these chemicals remain in the environment from past use and human

exposure occurs in foods and drinking water. Studies of the breast milk of

nursing mothers have revealed that the majority have oue or more of the

chlorinated hydrocarbons in detectable amounts in their milk. Thus, the

fetus may be exposed by passage across the placenta, and the newborn

begins life with ,the ri1611 likelihood that such chemicals are in its diet either

in breast milk or other foods.

Aerial spraying of pesticides constitutes a special problem since the

wind can carry such chemicals to nearby homes and schools, thus greatly

increasing the number of people exposed to them.

Considerable anecdotal evidence was presented to the Panel by health

authorities during the Panel's site visit to rural Mississippi that child

illness is higher in areas of intensive aerial crop spraying, and these same

authorities algo suspected that some proportion of birth defetts, stillbirths

and infant mortality could be attributed to pesticide exposure in areas of

the Delta region where 2,4,5T is still used on rice crops.

Because it can take many years to determine the full health effects of

any compound, and because longitudinal studies are expensive and

sometimes inconclusive about causation, complete knowledge of longterm health risks from pesticides is not likely,soon. But the fact that partial.._

evidence is often the only evidence we have is not sufficient reason

inactivity. The burden of proof that damage will not result from

commercially available sprays and other insecticides should rest with

manufacturers and policymakers rather than with parents.

Pesticide tolerances preseritly are calculated using- consumption data

and average body weight of an adult. Because children have a smaller

body weight, the amount of pesticidt_ which can safely be ingested by a

child may be different than for an adult. Food consumption patterns also

differ for children resulting in, a special profile of risk. These and other

factors unique to the child population deserve sustained attention from

manufacturers, public health officials, environmental protection authortic

ties, and researchers.

Lead

Some urban children are at special -risk for high levels of lead in the

blood because lead in the air exerts a combined effect with lead in

drinking water, and sometimes with ingested lead paint chips. Elevated

91

1 I
blood lead levels are now known to have a serious negative effect on

health, and indirectly on health-related behavior such as school performance (27). More than three-quarters of American familes now live in metropolitan

areas, and in most of -these areas toxic gases and particulates, mostly from

automobiles and industries. pollute the atmosphere. Lead is a major

problem along with excessive sulfur oxide, carbon monoxide, ozone, and

nitrogen oxides. Airborne lead, like the other pollutants, may -pose more

severe problems for children than adults, not only because children will

experience them over a longer period but because many particulates are

densest close to the ground, where children, are exposed more intensively.

Although the Environmental Protection Agency has issued regulations for

stationary sources, such as smelters, it has not yet dealt with the problems

surrounding motor vehicle emissions. In particular, the hase-down of

lead in "leaded" gasoline has not been adequately carried out.

Lead which enters drinking water from old pipes or the solder used to

join copper tubing presents an equally pervasive problem. Most of the

Nation's older cities have not yet faced the enormous and costly task of

modernizing and rendering safe their water systems. Similarly, the pipes

found in olcier housing may pose significant risks.

One of the most difficult and serious problems to combat is lead-based

paint. Unlike air and water borne lead, lead in paint is uniquely hazardous'

to young children. It is sometimes ingested by children in the form of

paint and plaster chips in concentrations sufficient to produce serious

impairment. Although the dangers of lead paint have been well publicized

and its t.se is now banned in all new housing, adequate steps still have not

been taken to remove it from older homes where children live. It is notable

that of the housing stock directly owned or financed by the Federal

Department of Housing and Urban Development, 1.8 million dwellings

built before 1971 contain lead paint (28). Targeted efforts to remove this

hazard, at least from rooms and at levels where children can reach it,

would seem a minimal Federal responsibility.

Radiation

If exposure levels are . highenough. ionizing radiation can cause

leukemia and other cancers, genetic defects, and tissue injury. Approximately 45 percent of the radiation to which the general population is

exposed comes from medical and dental use of X-rays and from

radioactive materials used for diagnosis aiid treatment Thus one major

point of policy leverage in reducing radiation risks for most Americans is

through the regulation and appropriate use of medical and dental X-rays.

Almost all remaining radiation, exposure is from naturally occurring

radioactive materials in water, soil: and air, except for roughly 5 percent

from fallout, industrial uses, production of nuclear power, and various

consumer products_ The Food and Drug Administration is empowered to regulate medical

X-rays. This can be done by establishing standards on X-ray machines

themselves, by establishing exposure guidance rules, or both. Thus far

92 ;
only the first approach has been used, although the possibility of issuing

patient exposufe recommendations is being discussed. Two .States

Illinois and Vermonthave developed population exposure limits, and

others currently are developing exposure guidance rules. The Panel

believes it would be wise to create a national standard of exposure limits

for pregnant women and children under 1 year of age, to guard against

developmental damage and the risk of leukemia from X-ray exposure.

Physicians ordering X-rays should inform parents of potential risks to

their children before X-rays are used for diagnostic purposes, and

operators of X-ray machines should be required to utilize protective

coverings to limit the exposure to a medically necessary minimum.

Operators also should display a notice in all X-ray rooms instructing the

patient to inform. the technician if she has reason to think she might be

pregnant.

Occupational Exposures

Among the approximately 105 million American workers, an estimated

73 million are between ages 16-45 (29). Many are exposed daily to one or

more occupational health hazards: carcinogenic chemicals, pulmonary

irritants, .:adiation, and various causes of, psychological stress such as

excessive noise. Although no accurate statistics exist regarding how many

of the 400,000 new cases of occupation-related disease each year involve

persons of childbearing potential or pregnant women, the number is

certain to be large. Some hazards have the potential of causing birth

defects, genetic changes, stillbirths and spontaneous abortions, as well as

causing sterility and reducing fertility. Most of the serious occupational hazards affect those whose work

involves sustained close proximity to toxic agents and radiation. The

-Surgeon General reports that 34,000 chemicals in the workplace have

toxic effects, and over 2,000 are potential human carcinogens. Nine out of

ten American industrial workers are not adequately protected against at

leaf t 1 of the 163 most common hazardous industrial chemicals. Further,

the development of hazard control technology has lagged behind the

growth in use of hazardous chemicals and sources of potentially

dangerous energy such as lasers, nuclear reactors, ultrasound, and

microwaves (21). Occupational hazards may be controlled by altering work environments, requiring special protective -equipment, and offering special

training. The Occupational Safety and Health Administration is empowered to establish standards for health in the workplace, and the National

Institute for Occupational Safety and Health, within the Centers for

Disease Control, also performs an important role in sponsoring re.evant

programs and research. These agencies have begun to develop policies

toward reproductive hazards. in the workplace, but no comprehensive

national policy exists. Such a policy needs to be developed to address

those-sources of chemical and radiation risk which cause reproductive

failure in male and female workers, and genetic damage or congenital

anomalies in the fetus and the newborn. Immediate attention should be

93
given to establishing standards for occupational exposure to lead.

asbestos, pesticides, and radiation. The policy should be updated at

intervals with the accumulation of new knowledge and information

regarding occupation-related risks. Standards which focus only on women of childbearing age %;an lead to

discrimination in the workplace, either by exclusion of women from

certain types of jobs where there is chemical exposure, or by requiring

evidence of sterilization in women to avoid fetal exposure to chemicals.

Chemicals can have adverse effects on males as well, as in the case of the

pesticide DBCP which is believed to have caused sterility in male workers,

and lead and other substances which can cause mutation of male sperm

cells leading to miscarriages and birth anomalies. The workplace should

be safe for both sexes, and standards should allow both men and women

who want to have children to transfer to another location with no

exposure to risk-related chemicals, without financial penalty. This last

point

some

particularly important because higher pay for hazardous jobs may

lead some employees to choose short-term financial gain over long-term

health protection. Agencies seeking to help vulnerable employee groups

should target their efforts on communities where only one industry, with

hazardous working conditions, offers the major employment opportunity.

Federal Policy

Because chemicals slid radiation pose significant risks to the fetus, the

newborn and the young child, certain minimal federal legislative, regulatory, and administrative steps should be taken to address these

environ.mental hazards. Such steps include at least the following:

Congress should-move swiftly to enact legislation and appropriate

funds establishing a partnership of private corporations and

public authorities to clean up existing chemicil dump sites. In

implementing this legislation, first priority should be given to sites presenting greatest immediate risk to signific 'fxt numbers of

pregnant women, infants, and young children. The Environmental

Protection Agency should further establish a strict monitoring

system for future toxic waste disposal, with approporate indicators of risk to pregnant women and young children, under the

provisions of 94469, the Toxic Substances Control Act of

1976. Exposure and ingestion tolerances for pesticides should be

calculated to reflect levels considered safe for infants, children,

and adults of both sexes, with particular attention to pregnant

women. Regulation, of pesticides should be based on premarket

tests including reproductive studies in test animals.

Special attention should be given by thetPA to levels of pesticide

ingestion for migrant and seasonal farm workers, their families,

and other rural families.

The Department of Health and Human Services should work

jointly with the Department ofHousing and Urban Development,

the Environmental Protection Agency, the Department of Energy,

94
and other. relevant Federal and State agencies to develop a

comprehensive national policy for removing dangerous levels of

lead from air, water, and paint or other housing materials, with

/special attention to educating- parents and minimizing child

exposure. The Food and Drug Administration should establish national guidelires of X-ray exposure limits for children and pregnant women. Also, health providers should routinely employ every

available means to protect children and pregnant women from

unnecessary exposure to X-rays. including formal and informal

educational programs for parents anti children. The Occupational Safety and Health Administration and the National Institute of Occupational Safety and Health should

collaborate with other relevant Federal and State agencies and professional Organizations such as the American College of Obstetricians and Gynecologists to develop a comprehensive policy regarding reproductive hazards in the workplace.

DRUG AND FOOD SAFETY

Approximately 70,(v.1J prescription drugs and more that 200,000 overthe-counter drugs are now on the market, many of them used by children

and pregnant women. Although for the most part these drugs are safe if used appropriately, the chance of adverse reactions is real for many of

them. Adverse reactions sometimes .ake immediate and discernible, but in other instant-es effects may be more subtle, cumulative or difficult to

detect.

On many grounds, safety criteria for drug use among young children

and pregnant women must *differ from those for other groups. Pregnancy

and early childhood present unique susceptibilities, changing hormonal

balances, and a series of other biochemical considerations which require

. special attention and vigilance by parents, drug manufacturers, and

regulatory authorities. The FDA has recently established labeling standards for prescription drugs used during pregnancy so that physicians, pharmacists and

consumers will have information about correct use and special risks. Such

labels will be attached not only to drugs commonly used during pregnancy

such as sex hoemones employed in diagnostic testing, oxytocic drugs for

inducing labor and anesthetics used during delivery, but also to generaluse prescription drugs such Is analgesics (e.g., Demerol) and diuretics known to carry special risks during pregnancy. The new labeling

regulations will be directed principally to physicians and pharmacists, although labels will be written in language intelligible to the consumer. One serious limitation of the FDA policy is that it does not apply to

nonprescription drugs, many of which pose risks for pregnant women. Negative consequences havz been associated with the use of aspirin,

antihistamines, sleeping pills and numerous other over-the-counter preparations, causing many obstetrici.tns to discourage any use of these drugs at

all during pregnancy. Labelini, regulations, requiring warnings in plain

95
English, need to be developed by the FDA for all over-the-counter drugs

oeith known or presumed risks during pregnancy.

The special sensitivities of pregnant women and children should also be

taken into account is research and testing of new drugs. Cliaibal testing of

new .pharmaceuticals is generally done on adults while infants and

children may have a quite different threshold dosage for safety and

efficacy. A coherent national policy governing drug testing and research to

determine safety and efficacy of drugs for infants, children; and pregnant

women needs to be developed by the FDA, with criteria for clinical

testing, premarketing _approval, and subsequent monitoring of effects.

Longitudinal research should be included to evaluate both the immediate

and long-term effects of drugs used during pregnancy apd childbirth qn

maternal and infant outcomes and subsequent physical, neurological,"ind

behavioral development of offspring. It also is essential that maternal and

child health expertise be represented on advisory boards utilized by the

FDA to review policy toward all drugs which may affect .the health of

fetus and the mother, and to develop more rigorous criteri t and

proceduies for review of new drugs intended for use among women and

men of childbearing years. The Food and Drug Administration also performs a vital role by

routinely monitoring thousands of different commercially available

foodstuffs for nutritional content, use of additives, and unintended

presence of toxic substances. This task is potentially so vast that it must be

performed selectively, on a sampling basig. One recent successful FDA

policy initiative has been the requirement of labels specifying nutritional

content on all commercially sold baby foods. As a result of this policy, the

nutritional quality of baby foods has improved since both manufacturers

and consumers are more aware of nutrient content. The change has

occurred without undue cost to industry, and with clear social benefits.

The composition of infant formulas also has been the object of FDA

policy, as well as recent Federal ,:egislation. The FDA, working closely

with organizations sucl as the American Academy of Pediatrics Committee on N itrition, developed regulations on the nutrient composition of

infant formulas as early as 197i. These regulations served as guides forhe

manufacturers and provided information to consumers. New scientific

information has required that the regulations be updated. The need for

vigilance is demonstrated by recent experience with one commercially

available formula whose chloride content was so low as to result in

nutritional imbalance among infants fed on it exclusively. Another of the

potential problems with certain infant formulas is contamination by toxic

chemicals such as leads which sometimes is introduced due to leaching

from the seams of -metal containers. Sadly, elements in formulas are not

the only hazard to nutrition of the newborn. Contnrninants also may be

present in human breast milk. PCBs, pesticides and certain chemicals are

known to enter breast milk There are still many unanswered questions

about the absorption of such contnmiTtants and their biological influence

on the health of the mother 4nd infant. Some epidemiological surveillance

has been done to assess levels of exposiire of the population, but nu,re is

96
. needed. MO priority should also be given to more research on the effects of spiBtaminants in human milk. Additives are pervasive in the foods consumed by mothers and children. and can constitute andther source of risk. Certain coal tar derivatives used

for coloring .have been sflown to be carcinogenic in aninial tests. Some

researchers believe that color dyes also may cony ibute to hyperactivity in

-certain children. Because coloring and additives give no nutritional benefit and pose an unknown risk; their use should be subject to research and

regulatory scrutiny in the future.

1'31

In ewing the numerous research activities of the FDA and other

- agencies, the Panel believes that three research privrities

,/offqdd safety should be established in addition to, or in reinforcement cif, ihodke addressed in the previous paragraphs. These include the following: Further work on nutrient imbalances and toxic exposures in the

fqods of infants, adolescents, chronically ill children, and preg- nant women, with exploration of implications for a more coherent

national policy on necessary safeguards. New research on communication of safety and nutrition information to consumers, including assessment of how best to reinforce

labeling policies so as to improve consumer choices. More intensive investigation of relationships between food com- position, food additives, and child behavior, with special attention

to the effects of nutritional imbalances and additives on school

performance,-social adaptation, and coping-skills.

Alcohol, Nicotine, and Caffeine

Mounting evidence suggests that "serious adverse consequences to the

fetus and the mother can result from excessive consumption of alcohol, nicotine, and caffeine during pregnancy. Babies born to women wire

consume excessive amounts of alcohol durizig pregnancy can suffer central nervous system disorders, growth deficiencies, and other birth

defects. Steps are being taken by the Federal GoVernment and rele /ant professional and consumer groups to educate the public about the dangers of fetal alcohol syndrome, althoigh no riegillatory policy has beei established to require warning labels or otherwise communicate the

dangers of alcohol during pregnancy. Problem drinking in pregnancy is discussed in greater detail in chapter 3. - Babies born to smoking mothers are more likely' to be of low birth weigh' at full term, to be premature, and to have mild deficiencies at birth.

An association also exists between the . number of cigarettes smoked per

day 'and the probability of spontaneous abortion. As noted earlier in the

report, these facts give cause for concern because even though the

-percentage .of women who smoke has declined, the rate of initiation

among younger women entering the childbearin' g years has nos. More educational programs arc needed aimed at teenagers and women of

childbearing years to emphasize the possible adverse effects ofsmoking on

pregnancy outcome. . 97
In animal testing. it also has been established that caffeine can produce

birth defects. Although evidence still is not conclusive enough to merit

warning labels for caffeine-containing products. the FDA presently plans

to warn women that they should stop or minimize drinking of coffee, tea,

and colas during pregnancy.

FDA Policies

In summary, the; Panel recommends that. at a minimum, the FDA take

the following steps in collaboration with other federal agencies and state

and logasuthorities to Turther assess and make known potential hazards

whick and food sustances may pose to children and pregnant

women:

Existing Federal drug labeling requirements pertaining to risks for

pregnant women should be extended to nonprescription drugs.

The special sensitivities of pregnant women and young children

should be taken into account when setting standards and

establishing threshold levels for the safety_ of all drugs and foods.

The FDA should establish a coherent national policy regarding

food dyes and additives as these affect pregnant women, infants,

and children, and issue regulations, require warning labels, and

take other appropriate steps whenever significant risks are found.

When appropriate, the FDA should act in collaboration with the

Alcohol, Tobacco and Firearms Agency of the Treasury Department, other government agencies, private industry, and relevant

professional groups.

SAFE AND HEALTHY WATER

Most communities in the United States have eliminated obvious sources

of infectious disease from their water systems, but three problems remain.

Many community water supplies still are not fluoridated, some families

still lack adequate potable watt and sanitation, and certain potentially

dangerous cheraicids still are found in drinking water. (-1

. Fluoridation

Tooth decay is one of the Nation's most common health problems,

affecting 95 percent of all Americans. In 1978, total dental expenditures in

the United States reached $13.3 billion, up from $3.7 billion in 1968, and

accounted for 7.9 percent of an personal health care expenditures. Children who from birth have access to fluoridated drinking water

average 50-70 percent less tooth decay than those without Loss of first

permanent molars can be reduced by three-quarters, and some types of

caries by as much as 95 percent (30). One conservative estimate has

suggested that water fluoridation, by reducing the incidence of dental

caries, produced annual sayings of treatment costs of $11 to $16 per

capita, resulting in a cost-benefit ratio of roughly 1:50 after 12-15 years

98
(30).. This means that for every dollar spent on water fluoridation. 50

dollars are saved in treatment costs.

to spite of these facts. fewer than 50 percent of all American families

and children have access to fluoridated water, and those who do may in

some cases be served by fluoride- deficient water systems. Other alternatives are available or can be used in combination with water fluoridation.

In areas where fluoridation of community water supplies is not feasible.

fluoridation of school water supplies can still provide substantial protectionan estimated 30-40 percent reduction in tooth decay. A variety of

other measures can also help, including the use of appropriate toothpastes. fluoride mouth rinses, dietary fluoride supplements. and the direct

application of fluoride to the teeth by the dentist or dental auxilliaries. But

none is as effective or economical as direct fluoridation of water supplies.

t. The Federal Government has been less than strenuous in its support of

water fluoridation, partly because some groups have argued that fluoride

may pose a long-term hazard to health. The recent Surgeon C-ye-,;:rars Report on Prevention does not lend support to this view, arguing instead

that research over the past 35 years has produced no evidence to support colficern. Another reason for Federal hesitance has been that decisions to

fluoridate remain a local political prerogative This is appropriate, but need not preclude a supporting Federal role. The first Federal funds ever provided to assist States and communities

in voluntary flucridation projects, totaling $2 million, were appropriated

during 1979. This figure rose to $6.8 million in 1980. The President's 1981

budget supported the importance of fluoridation as part of a total

prevention package, and requested additional funds to support voluntary

community efforts in the future. The Panel supports these initiatives and

believes that the program of Federal startup grants for voluntary

fluoridation projects should be continued and- enlarged. Educational

efforts offer another avenue for Federal support. A recent report from the

General Accounting Office indicates there has been a decline in public

knowledge about the benefits of fluoridation. This may in parf be the

result of a tendency to pay greater attention to "new" health hazards than

to persistent old ones, but whatever the reason, a renewed effort to inform

people of the benefits of fluoridation is warranted.

Potable Water and Sanitation

An examination of 1977 Annual Housing Survey indicates that approximately 1.2 million American children live in households which

have sources of water other than public or privately owned municipal

systems cAc individual wells (31). Approximately 600,000 live in households

into which no water is piped: These figures indicate a substantial number

of children are members of households which get their water directly from

bodies of water or have their water shipped in and stored. In the first case,

the water is probably boiled before use but otherwise not purified. In the

latter case, the tank trucks that transport the water and the facilities in

which the water is stored arc highly susceptible to contamination, as are

all closed water systems.
1rraddition, the same survey estimates that there are approximately 1_35

million children living iv ,tomes with incomplete plumbing facilities.

These children may contract disease or illness from mere exposure to

untreated waste water as will as from ingestion of contaminated water.

The children most likely to live in dwellings like those described are the

same high-risk children whc- are often denied access to health care because

of geographic or socioeconomic factors. Typically, they are black or other

minority children living in nouseholds with incomes of less than $10,000 a

year and which are located in rural areas (especially the South) and

headed by one parent having only an elementary level education.

The Public Health Service has no concrete data as to either the total

number of cases of enteric disease caused by consumption of or exposure

to contaminated water, or the number of children afflicted with these

diseases as a result of drinking or coming in contact with disease-laden

water. However, it did report that there were 31 separate outbreaks of

enteric disease emanating from contaminated water sources in 1978.

These outbreaks involved approximately 11,000 cases.

A large percentage of these 11,000 cases were apt to be children,

because children are generally more susceptible to enteric disease. Young

childreL under the age of 9 are likely to suffer disproportionately. The

Public Health Service cautions that prevalence among children may not

be greater than for the rest of the population; it may be that more cases

are reported because care is sought more often for children manifesting

symptoms of these diseases. However, children must receive care more

often than adults because they cannot tolerate the acute dehydration

which characterizes enteric diseases. The effects of these diseases on

children can be severe if proper medical care is not readily available or

sought. Problems of inadequate water and sanitation facilities, which are

particularly prominent in the rural South and Southeast, need to be

brought to the attention of relevant State Governments, State and local

environmental protection authorities, agricultural authorities responsible

for rural water projects, and the Public Health Service. In addition,

national research is required to ascertain the total number of cases of

enteric disease among American children which can be directly attributed

`to drinking or coming into contact with contaminated water.

Chemical Contaminants

Environmental protection and health authorities also face the problem

of removing certain potentially dangerous chemicals found in drinking

water. Excessive nitrates, sodium, lead, and organic contaminants may

pose hazards to children and pregnant women. The amount of sodium entering drinking water supplies could be

somewhat reduced by the substitution of other compounds for salt

commonly used on icy roads in winter. ChOoform, which, can affect fetal

growth,_ often forms as a result of eteaction between chlorine and organic

contaminants but could be removed by treating drinking water with

granular activated carbon. The Environmental Protection Agency is

100
required to establish standards for various pollutants_ in drinking water.

We believe that this mandate shbuld be carried out with special concern

for risks to pregnant women, and long-term cumulative risks to children.

Next Steps

Clean and healthful community water supplies should be available to all

American families. As immediate and rninirrinl next steps, thee Panel

recommends that: All community water supplies should be fluoridaCed wherever

possible, and Federal assistance to States and mmunities

water fluoridation should be expanded. Wher.. community w

supplies cannot be fluoridated, school water supplies should be,

and fluoride toothpaste, mouth rinses, supplements, and topical .

treatments should be enconraged. Problems of inadequate potable water systems and sanitation

facilities should be brought to the attention of relevant State and

Federal agencies. Collaborative effort of both State and Federal

agencies, initiated by the Public Health Service, should result in a

specific program to correct these serious health hazards.

Federal funding, should be provided for a national study to

ascertain the inciden,e and prevalence of all infectious diseases

among children in the United States which can be attributed to

contaminated water supplies, with the subsequent use of the study

to target remedial efforts.

REFERENCES AND NOTES

(I) National Center for Health Statistics- -Final Mortality Statistics I977.- Monthly Vitt! Statistics

Report Washington. D.C.: U.S. Government Printing Office.

(2) National Safety Council. Accident Facts. 1979 ed. Chicago. IlL: National Safety Council. 1979.

(3) Williams, A. F. "Observed Child Restraint Use in Automobiles." American Journal of Diseases of

Children 130: 1311-1317, 1976.

(4) American Academy of Pediatrics. Guidelines for Pediatric Health Professionals. Evanstr .1

American Academy of Pediatrics. October 1979-

(5) Insurance Institute for Highway Safety. Sas 14(144), September 1979.

(6) National Highway Transportation and Safety Administration. Federal Motor Vehicle Standard

213.49 CFR Section 1.50 (1980).

.(7)- Tennessee Chi* Passenger Safety Act. Tennessee Code Ann. Section 59-930. 1977.

(8) Robertson. 1... S. -Environmental Hazards toChildren: Aisessment and Options for Amelioration.-

In Better Health for Our Children: A National Strategy. Vol. IV. Washington. D.C.: US.

Government Printing Office. 1981.

(9) National Safety Council- Motorcycle Facts, September 1979.

. (10) Comer Pr:xluct Safety Commission, National Electronic Injury Surveillance System. Unpublished data, 1979.

(11) National Safety Council,. TrafficRecords Committee Proceedings. Traffic Conference. 1978.

(12) National Highway Traffic Safety Administration. Fatal Accident Reporting System Unpublished"

data. 1979.

(13) National Center for Health Statistics. Mortality, Vol. II, Part A. Washington. D.C.: U.S.

Government Printing Office, DHEW Pub. No. (PHS) 79-1114, 1979.

(14) Briefing Package to the ConsumerpProduct Safety C.oramissioucr on Tap Water Scalds, Tab B.

Unpublished, September 10. 1980.

101
r-. .(I5) Children's Television Workshop. -Fire Safety oi. Televesion for Preschoolers.- US. Fire Adminisbation Report. July 1980. (16) Novick. R. E. "A Community Action Approach for Prevention of Burn Injuries.- United States

Department of xiaith. Education. and Welfare, Missouri Division of Health, 1969.

(17) Spiegel. C. Nand F. C. Luidaman- -Children Cant Fly: A Program to Prevent Childhood

Morb;Jity and Mortality from Window Fans:" American Journal of Public Health 67: 1977-

(IS) Consumer Product Safety Commission. National Electronic Injury Surveillance System. Estimates

for the 1979 calendar year. (19) Consumer product Safety Commission. -Impact of Crib Safety Activities on Injuries and Deaths

Associated with Cribs." February 1979. (20) raster. E. Presentation of a Proposal for an Accident Prevention Program for Children.

Washington. D.C: U.S. Department of Health and Human Services. February 15. 1980.

21) U.S. Department of Health. Education. and Welfare, Public Health Service. Healthy People, The

Surgeon General's Report on Health Promotion And ra =SC Prevention. Washington D.C.: U.S.

Government Printing Office, DHEW Pub. No. (PHS) 79-55071. 1979.

(22) Newton. 0. D. and F. E. r.ratrin&. Firearms and Violence in American Life: A Staff Report to the

National Committee on the Causes and Prevention of Violence. Washington. D.C.: U.S.

Government Printing Office.

(23) Centers for Disease Control Accident Prevention/T:ijury Control Proposal. Unpublished. January

1980.

(24) Annual Report of the Association of State and Territorial HealthOfficials. 1978-79.

(25) U.S. Environmental Protecdon Agency. Office of Water and Waste Management EwAybodys

Problem: Hazardous Waste. Washington. D.C-.: U.S. Government Printing Office, Solid Waste Pub.

No. 826. 1980.

(26) Tbe New York Times, June 6, 1980.

(27) Needleman. H. I-, et a/. "Deficits in Psycliologic and Classroom Performance of Childrem with

Elevated Dentine Lead Levels." New England Journal ofMedicine3(*: March 29. 1979.

(28) U.S. Office of Management and Budget and U.S. Center for Disease Control. Personal

communication. 19801

(29) US_ Department of Labor. Bureau of Labor Statistics. Employment And Earnings 27: 18. June

1980.

(.30) Institute of Medicine. Public Policy Options for Better Dental Health. National Academy of

Science', Washington. D.C. 1980.

(31) 1977 Annual Housing Survey Public Use File. Unpublished data102

-v
CHAPTER 3

HEALTH AND BEHAVIOR

The relationship between health and behavior is both self-evident and

complicated. Everyone knows that health is shaped significantly by

individual choicesto eat some things and not others, take risks or avoid

them, follow health-related advice or ignore it, exercise or not. But such decisions are .made in human contexts with many different economic, social, and psychological elements which complicate and influence them. Health-relevant behavior islan. integral part of overall lifestyle and behavior, which starts forming in infancy. It is influenced by a wide variety of factors including the examples set and instruction given by

parents, siblings, peers, schools, religious and community groups, and the media. Behavior may be modified by what is consciously taught, but it will certainly Se shaped by what is seen, heard, and felt in the course of daily

life.

The health of children and youth is significantly affected by their own behavior and by the behavior of others, particularly their parents and

peers. A mother's influence commences even before birth, for a number of maternal behaviors such as smoking, drinking and drug use can affect the outcome of a pregnancy. As children develop, they learn to respond to

their environment selectively and in patterns characteristic of their social groupingsThese patterns have considerable influence on adaptation, on

health, and even on how health is defined. Many, behavior-patterns which- have significant implications for health over a lifetime are formed during

childhood and adolescence. Successful attempts to influence health- related behavior in positive ways early in life therefore can have

significant long-term payoffs. Other chapters of the report contain much material relevant to health

and behavior. In the final analysis, it is impossible to analyze topics, such

as environmental risk reduction, improved nutrition, or access to health

services without consideration of behavioral factors along with financial, organiational, and other factors. We devote a separate chapter to health

.and behavior to permit a sustained look at those aspects of behavior'which

are of particular salience to health in each of four life stages (pregnancy, infancy through the preschool years, elementary school age, and adoles- cence), and to discuss how five of society's major institutionshealth care

settings, thy schools, the media, the, workplace, and the communitycan

influence health-related behavior through education, guidance, and

counseling- These matters are is the sections *filch-follow.

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Several caveats recurred in all of the Panel's discussions of health and

behavior; and apply generally throughout the chapter. First, the degree of

control people have over their health-related behavior is not evenly or

randomly distributed in society. Whether children or adults, it is far easier

for those with extensive education and high incomes to adopt a healthy

lifestyle than it is for individuals at the low end of the socioeconomic

spectrum. In addition, there are value judgments and moral questions

'implicit in many behavioral decisions, and a delicate political and

philosophical dilemma is presented whenever public policy seeks to

influence private behavior. The emphasis, the Panel believes, should be on

promoting informed decisionmaking rather than on behavioral prescription_Finally, education, counseling, and other efforts to influence individual

behavior do not preclude simultaneous moves to restructure environments

so as to enable healthful choices to be made. As noted in chapter 2, some

of the most useful "behavioral" interventions are those which require no

voluntary action by the individual but instead preclude a dangerous

choice or permit a healthful one automatically. Also, many of the most

successful efforts to promote healthy behavior involve elements of both

structural change and education.

It makes no sense to consider policies to enhance health-related

behavior- among children and pregnant women without first acknowledging the widely differing age groups involved, each with its own developmental stages, profile of behavioral risk, array of socializing influences,

and opportunities for learning. Health promotion for women of childbearing age certainly is not the same as health promotion for children and

youth, and among young persons it is useful to distinguish among at least

three groupschildren five and under, elementary school children, and

adolescents. Even these-groupings are not differentiated enough for many purposes.

From a developmental standpoint, it is clear that special conditions apply

in the forst six months of life, to I to 3 year olds, to preschoolers, to early

adolescents, to youngsters 16 to 18, to very young mothers, and to various

other age categories (1). Economy of presentation requires that we settle

here on four groupings, pointing. out special behavioral circumstances or

issues for subgoups when appropriate. For each age range we review only

selected developmental influences and behavioral risk factors. A comprehensive discussion of needed health services for children and pregnant

women is found in chapter 5_

PREGNANCY

In the process of child development, the earliest phase and in many

regards the most important is fetal, development and birth itself. Maternal

behavior can influence fetal development and pregnancy outcome in a

number of ways, beginning with conception_ If the decision to become

pregnant is made consciously and a child is wanted, parent attitudes and

Levelopmental prospects for the child are more likely to be positive than if

conception is inadvertent_ Hence responsible sexual behavior itself is a

significant factor in reducing developmental risk. Use of family planning

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counseling is one way to reduce the chance of un -anted pregnancy. Another is widely available education in human sexuality. Good .nutrition both before and after conception, and access to timely prenatal care, are probably the most important factors in promoting

normal pregnancy outcomes, as discussed elsewhere in this report. Both

are most effective when they include a significant educational and

counseling component, informing prospective parents of appropriate behavior during pregnancy. Education and counseling can be provided in many sites, including health care settings, free-standing clinics, the

workplace, and even at times the school.

Alcohol, Smoking, and Drug Use

Certain maternal behaviormost notably alcohol consumption, smoking and drug usecan seriously affec. lregnancy outcomes and therefore warrants intensive concern. Since such behavior is almost always well- entrenched before a woman becomes pregnant, the most urgent need is to help the pregnant woman understand the risk her behavior poses to her unborn child and to assist her in modifying her behavior in ways that eliminate or reduce those risks. Heavy drinking by pregnant women has been shown to result in a

characteristic set of abnormalities called fetal alcohol syndrome (FAS) which afflicts as many as 4,000 to 5,000 infants a year. These infants are

often of low birth weight, mentally retarded, and may exhibit physical, neurological, and behavioral problems, with abnormalities and other serious defects in almost half of the cases. Both the risk and the degree of abnormality go up as ccririumption of alcohol increases. One Boston City Hospital survey found 74 percent of infants born to women who

consumed more than 10 drinks per day had the fetal alcohol syndrome. Congenital defects were found among 32 percent of infants born to heavy

drinkers compared to 14 percent of the offspring of moderate drinkers and

9 percent of infants of nondrinkers (2). The effects of moderate drinking,

or of occasional binge drinking, are less well documented but animal studies suggest caution in the use of even small amounts of alcohol by

pregnant women. There is also substantial evidence that smoking increases the risk of

spontaneous abortion, neonatal death and low birth weight. Women who

smoke double their risk of having a low birth weight baby. Infants born to

smokers weigh an average of 200 grams less than tho&e born to

npasmokers, and this effect is independent of all other factors known to

influence Iiirth weight. Analysis of data from several studies in the- United

States and Canada shows from 20 to 40 percent of the incidence of low

birth weight in these countries is attributable to maternal smoking. Other studies indicate that the more cigarettes a woman smokes, the lower the

birth weight of her baby. However, if a woman stops smoking during herpregnancy, her risk of delivering a low birth weight baby drops back to

that of a nonsmoker. Thus, it is clear that health education efforts which

succeed in persuading pregnant women to quit smoking could have a

significant effect on infant health (3).

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1 {.
Most health-damaging habits are exceedingly difficult to break ance

they have become a part of the individual's normal everyday lifestyle,

even when the person wants to change. Motivation, however, can make a

dii.erence. Studies have shown that a smoker facing an immediate health

threat from his or her habit (such as a cardiac patient) is far more likely to

quit than someone contemplating the risk of getting cancer 20 years hence.

Pregnant women share this heightened motivation to modify their

behavior, for nearly all expectant mothers are anxious to avoid harming

their unborn babies.

Drug use during pregnancy also can result in serious risks to _fetal

development_ Some of the most dramatic and tragic effects are among

infants born to users of illicit and addictive drugs such as heroin. Women

of child-bearing age make up about one-fourth of all heroin addicts_ In

one metropolitan hospital center, there has been a five-fold increase in

births to drug addicted women in the past 20 years (4). Similar trends

probably can be found in other urban areas.

Less pronounced but more widespread problems have resulted from

inappropriate use of certain prescription drugs during pregnancy and at

the time of delivery, including pain killers and diuretics_ Adverse effects

on fetal development, premature labor, and other problems have resulted

in the new FDA labeling requirement discussed in chapter 2.

Preparation for Childbirth and Parenthood

Some forms of counseling and education during pregnancy can

influence parent behavior at the time of delivery and afterwards in the

care of the newborn. Information and support in the months prior to birth

can result in a number of desirable parent behavior patterns, including

informed participation in the process of delivery, appropriate use of health

care, and adjustment to the presence of a new family member_

Many h aspitals, obstetricians, family planning counselors, and other

health care personnel now urge both parents to participate in classes or

counseling preparatory to childbirth. Such education has medical and

pSychological benefits, helping both parents manage labor and delivery

and making the experience of childbirth a positive one. Research evidence

suggests that mothers who seek information about labor and delivery in

advance tend to require less medication, have shorter labors, and feel

more positive toward themselves and their infants afterwards (5, 6). Such

education or counseling may prove especially important for first-time

parents, adolescent parents, and those preferring "natural" childbirth and

home birth_

In recent years, a number of private, voluntary groups have offered

courses on labor and delivery. Such courses generally are offered in group

settings, and complement the counseling and guidance provided in typical

prenatal settings. Hospitals, clinics, and group practices also have

organized such classes. The Panel views these initiatives very favorably,

and sees the need for such education as an integral component of prenatal

care. We believe the availability of childbirth education should be

increased, with special efforts made to reach low income, minority, and

high-risk women and couples_

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Similarly appropriate guidance and support in the period immediately

after birth can help a family cope with such questions as infant feeding, how to manage a difficult baby, how to recognize illness, and how to provide a safe and stimulating environment for an infant. Because

techniques and styles of caring for and nurturing an 'infant are largely

learned behaviorsalbeit shaped by individual temperament, cultural, social, and familial factorsthe perinatal period provides a good

opportunity to teach parents about child behavior and development. Hospital practices and staff attitudes can significantly affect some child

nurturing practices, such as breast feeding (7). In addition, positive modes of interaction between parents and infant can to some degree be fostered by hospital personnel and others in the hospital setting. This may be

especially important for parents who show ambivalence toward their

infant, or those at risk because they have a premature or developmentally

disabled newborn.

The perinatal period also is an opportune time to link families to other services or support groups to assure continuous care. One mechanism for such linkage discussed at greater length in chapter 7 is home visiting, which can ease the transition from maternity hospital to hOme and offer continuous support for a period thereafter. In general, the Panel feels that

,much more needs to be done by way of parent education before, at the

time of, and immediately following, childbirth. Clearly this is a "teachable moment" in the life of every family, and one which deserves more

systematic attention. Numerous persons can have a role in parent education: family life educators, primary care physicians; nurses, psychiatrists, clinical. psychologists, social workers, and various types of counsel- ors, home economists, religious leaders, teachers, and others (8). The youi.g adolescent mother is in particular need of parent education

and support. Often ill-suited developmentally to respond appropriately to

the demands of parenthood. she has a major need for guidance. The Panel notes that although some current programs for adolescent parents include a parent education component, this service is not specifically referred to

either as a core or supplemental service in present Federal legislation

.authorizinE, grants for commupity -based services to adolescent parents. This oversight needs to be corrected, and experiments further developed with public and private support to teach teenaged mothers and fathers parenting skills.

INFANTS, TODDLERS, AND PRESCHOOLERS

From .earliest infancy, behavior patterns of parent and child must be understood as an interactive system. Although it has now been clearly

established that some aspects of child behavior are influenced genetically

(9), it is also clear that behavior of parents toward their children is an

important formative influence. For the child, the period from birth to age 5 is one of rapid and dramatic change in developmental capabilities and

receptivity to various socializing influences. For the parent, this is a period of maximum potential influence on the child's health and development. Strong bonding between infants and reeir parents or other caregivers in

the first 6 months of life is regarded as essential to normal emotional

107
development Taking the infant away from nurturing adults or exposing

the infant to only minimally affectionate persons during this period can

-adveisely affect the child's ability to relate to people later in life.

Infants are not passive. They already are able to process information, to

associate daily experiences with pleasure-or pain, and to form expectations .

about being attended to when uncomfortable. Moreover, they express

clear individual differences in personality, all within the range of normal

development (10). Parent expectations about the development of their infant are known to

be a st-ong determinant of child development (11). If parents like their

babies they will spend time with them. If babies are responsive, the

parents will reciprocate and stimulate them. If parents think their babies

are somehow defective, parents may ignore them. If the babies greatly

complicate their work and leisure life, they may come to resent them. All

such parent attitudes can affect the child's well-being over time.

In addition to attitudes affecting emotional and cognitive development,

parents adopt behavior patterns which can affect the health of their

infants immediate and practical ways. Appropriate patterns of feeding

and nutrition, household safety measures, and scheduled consultation

with health. care providers all can contribute to the child's long-term

health_ Very early in the child's life it is still parent behavior, for better or

worse, which determines many child health outcomes.

Just as parents exert a unique socializing influence in the first months of

life, so the health care and social service systems have a unique

responsibility to families at risk during this period_ Health care and social

service personnel are the only professionals likely to encounter parents

most in need ofguidance and support. Yet in many areas, the health care

and social-service systems do not reach out systematically to these parents.

The Panel believes that more needs to be done to assure preventive

outreach and education to new parents, especially those least equipped to

cope with family stress. There is little opportunity for effective health education when a child's

visit with the doctor typically lasts 10 minutes or less and constitutes the

only contact with the health care system. Organizational constraints and

inadequate financial incentives currently serve as barriers to effective

early outreach and education by health care professionals, especially for

high risk groups. These constraints are discussed further in chapter 6.

They need to _be removed to permit age-relevant counseling of parents and

children about a wide range of behavioral components of health

promotion. Health-related behavior of parent and child are no less important

during the period from 6 to 18 months of age, during which the child

learns to walk and to manipulate many of the objects in his or her

immediate environment- The likelihood of household accidents goes up

significantly during this period. Then from 18 months to 3 years of age,

the child undergoes additional rapid developmental changes, including

dramatic changes in language and cognitive abilities. During this phase

children begin to acquire the dominant beliefs, values, and behavior

pattern of their.. culture, many of which have implications for health.

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t

7.... 'I
The age span from I year to 3 or 4 years of age is cin' e in which some

children "clisappear" from public view. They tend not to- see health care

professionals as frequently as in the first year, but they are too young for preschool and only a minority are in formal day care settings. Hence those designing policies to assist parents of children in this age range have some unique difficulties. Health care and social service personnel remain the most likely source of guidance and education for such parents, and need

to give special attention to continuity of parental guidance while the child

is still a toddler. Accident prevention, proper habits of eating and hygiene, and other appropriate behavior patterns for the child should be the subject of counseling by health care professionals. Special attention also needs to be given to the risk of child abuse and neglect by parents under great psychological or economic stress. The age range from 1 to years is one in which the demands placed on the parent change in quality and scope, reflecting in part the increased motor competency and assertiveness of the

child.

Child Almg and Neglect

The vast majority of parents take great delight in tifeir children,

watching them develop and helping them learn. But almost all parents at one time or another h ive experienced intense frustration and anger. especially during periods of personal stress, and can understand the

impulse to hit or otherwise abuse a child. Most parents do not actually lapse into such behavior, but an estimated

500,000 to 1,000,000 each year, according to the National Center for Child Abuse and Neglect, do in fact abuse or neglect a child, even killing them

in approximately I percent of the cases. Abuse can take the form of blows,

burns, or sexual assault. Neglect can take various forms, including

starvation, confinement, exposure to unsafe environments, or the absence

of affection or attention. Children of all ages can be victims. but abuse or

neglect often begin. when the child is very young. Because such behavior is aberrant, reflecting extreme parental stress or

imbalance, it is difficult for most people to comprehend. For years, professionals and policymakers simply did not acknowledge the full

magnitude of the problem, or contemplate adequate steps to deal with it. Within the past 20 years, however, a considerable research literature has developed surrounding family violence, and child abuse and neglect in

particular. It is now known that abusive and neglectful parents are found

at all socioeconomic levels, and that no educational, racial or religious group is exempted altogether. It is also known that about 90 percent can

respond to various new and successful forms of therapy ( 12). Usually child abuse is the result of a family crisis or series of crises, with

some triggering event. Its remedy almost always involves counseling for

the entire family, nor just the abuiing person. Likewise, treatment generally requires a team effort involving numerous professionals,

including nurses, pediatricians, child psychiatrists, psychologists, social workers, educational specialists, attorneys, and child care workers.
Because therapy of this kind is expensive, especially if it involves

residential treatment, most health and social service expels stress the

need for better preventive programs. based on early assessment of family

risk, home health visiting by public health nurses, social w-Nrkers or lay

visitors, and vigorous community-based campaigns of education and crisis

management. In dearrioLIntration projects, preventive efforts have proven

highly cost- effective-in reducing predicted levels ct abuse and averting the

costs of subsequent rehabilitation for children and parents (13).

The Panel believes that health care personneland health policyniakers

at the Federal. State, and local levelshave a special obligation -to work

closely with other relevant professional groups on efforts to prevent child

abuse and neglect. Because these problems so often are first identified by

health professionals, and because good patterns of,parent-child interaction are so central to the promotion of child health, health care personnel

must take the lead in developing strong preventive outreach and

coordination cf services for families at risk. Federal, State, and local

health program:. and policies likewise should take explicit cognizance of

efforts in child abuse and neglect prevention in other service sectors, and

initiate joint planning and service delivery whenever possible.

Preschool and Day eare

From ages 3 to 6, the child's world rapidly expands beyond the family.

Children in this age range are influenced by a wide range of adults, and

also acquire new information and behavior patterns from other children.

By 1978, approximately one-third of all 3-4 year olds in the United

States attended nursery schools, an increase from 14 percent in 1967.

Moreover, 83 percent of all 5-year-olds attended kindergarten in 1978, as

compared to 68 percent in 1967 (14). Even if many of these programs are

only for half a day, they are a logical setting in which to influence health

and health behavior positively. Various professional groups, including the

American Academy of Pediatrics, American Dental Association, American Nurses' Association, and others have recognized the significance of

preschool and day care settings as sites for health education and parent

counseling as well as early identification of heahh problems and linking

families with sources of continuing health care.

Approximately 425,000 preschool children from low-income families

are presently enrolled in Head Start programs. These programs have

proven highly successful in achieving a wide range of objectives, among

them health promotion for the child and family. Head Start provides a

variety of services from child education to nutrition counseling for parents

and' supporting services for the family. Improvements in children's

cognitive skills achieved by Head Start are "health-related" in that they

result in fewer remedial placements and learning problems in later

schooling, and lead to better adaptive behavior in many domains. As an

effective strategy for health promotion among low-income preschoolers,

the Nation should extend Head Start to all eligible children.

The health and dental health education components of Head Start are

better developed than similar elements of most day care programs or

110
private preschools. -Head Start performance standards have required health education for the past several years, a step which the Panel applauds. Other publicly Supported and private settings could benefit from similar program elements_ In addition, as recommended in chapter 6, the Panel believes thaw full implementation of the newly formulated Federal day care regulations will be an important means for furthering health education in day care programs, as well as improving health

services to children attending these programs.

Television and Young Children

The preschool mild learns patterns of behavfor in part through direct

instruction, but more powerfully through imitation of conduct by adults, siblings, peers in the neighborhood, and persons seen on television. The influence_ of television can be seen in children younger than 3, but becomes a major factor during.the preschool and early school years. A. C. Nielson Company surveys indicate the average American preschooler spends more than 30 hours a week watching television, for a total of 6,000

hours in front of the tube before he or she ever sets foot inside a/first grade classroom. By high school graduation, according to another study, a child will have watched some 15,000 hour& of televisionversus the 11,000

hours spent on formal education (15).4Yhe implications of such behavior for the development of a sedentary life style are readily apparent. Further, because role Models play a significant part in shaping a child's behavior,

the Panel shares with many other groups a real concern about the content

of children's television programming and advertising. Television has a

great Rotential for influencing health-related behavior of children, but

such influence, at the moment, is largely negative as a result of violencesaturated programming, massive advertising of sugar-loaded and other

nonnutritional food, and excessive promotion of over-the - counter drugs. Program content is determined largely by public-demand as interpreted by the television industry. Accoiding to a recent report of the Federal

Communications Commission (FCC), broadcasters tend not to air a

sufficient number of educational or age-specific programs directed toward

children (16). In fact, of the stations in the 52 markets examined by the FCC in 1977-78, an average of 2.6 hours per week was devoted to such

programming. The Panel would urge the FCC to encourage a significantly

greater commitment to children's programming_ Controversy continues over the precise degree of influence that

television exerts inn specific areas of behavior, partly because there is

comparatively little rigorously designed research on the subject However, there is convincing evidence from a series of investigations that television

programming and advertising can significantly affect child behavior (17).

Moreover, if one follows the money, the hundreds of millions ofdollars

$600 million in 1978spent on television advertising directed at children

clearly shows manufacturer confidence that at least some behaviors can be

influenced via this medium. Of particular concern for health is the impact of 'children's food

advertising, where the bulk of, the money is spent. Until the age of 8 or 9,

1 '

111
children lack the cognitive ability to evaluate advertising messages_ They

have amore difficult time than older individuals in distinguishing fantasy

from reality, or exaggerated claims from facts. They also are likely to be

gullible (18). Action for Children's Television .cites current television advertising

tactics as one important cause of poor nutritional habits among children.

This notion is supported_ by the Society of Nutrition Education; whose

survey of 1400 nutrition educators found that 89 percent of respondents

agreed television undermines their efforts to teach sound nutrition to

children. Television advertising prompts children to pressure their parents

to buy well-advertised foods, and even parents who successfully resist

such pressure feel The strain television advertising adds to their relationship with their children (15, 18). Other con=erns involve the influence of television on aggressive

behavior, sex-stereotyping, over-the-counter drug use, and drinking In

each of these realms, more needs to be done to present positive models

and messages.

.. Television viewing generally begins to decline after age 12, and older

children are usually more resistant to its influent e. But for older children

as well as younger ones, television-watching limits time available for other

possible activities. Exercising, reading, conversing with family members,

doing school work, and playing with friends are among the lost

opportunities. For the most part, time watching T V is time not spent on

learning about life itself. While concerned about negative influences of television, the Panel is

also aware that some television programs have a demonstrable positive

impact on children. Productions of the Children's Television Workshop

(e.g., Sesame Street) are notable in this regard, as are various other shows

produced explicitly for c.hildre-n, including Mr. Rogers, Captain Kangaroo, special science programs, dramatizations for children, and more. In

addition, entertainment brcadcasting can offer positive health behavior

models, and public interest messages and counteradvertising can broaden

the information available to children and their parents. Recommendations

at the end of this chapter acknowledge the strong potential oftelevision as

a vehicle for health promotion.

SCHOOL-AGE CHILDREN

During the elementary school years and into early adolescence, the

child develops new cognitive competencies which permit better understanding of health and health-related concepts. During this same period,

attitudes and behavior arc increasingly shaped by school personnel and

peers as well as parents. School performance, and resulting feelings of success or failure, can

fundamentally influence the child's self-concept, with long-term effects on

motivation and achievement. Likewise, the seeds of later health-related

behavior are often planted during this period. The child gains increasing

awareness of his or her own sexuality; observes and may experiment with

the use of cigarettes, alcohol, and drugs; establishes exercise patterns and

112
a concept of personal physical capabilities; learns to enjoy or avoid

nutritious foods; develops attitudes regarding socially acceptable and

unacceptable risk-taking; and begins to.make personal judgments about appropriate use of health services. Thus, even as early as the first 3 years of elementary school, attitudes and behavior patterns take shape which

can have,long-term consequences. In the school environment, personal qualities, habits, and behavior

learned at home are evaluated as well as academic performance. Explicit health-and safety knowledge also is imparted. Children are likely to have contact with a school nurse or other health prOfessional, without the presence of their parents, and by about thine grade they are able to decide

for themselvei whether to report a personal illness ( 1 9). The culture of the school can exert as strong an influence on students as

the formal curriculum_ Schools' vary widely in their academic and social orientation, discipline, and the structure of social. groups, all of which can

have a bearing on health-related behavior. Many bring children from

different backgrounds and age groups together, exposing them to

behaviors and attitudes different from those developed in the child's own home or neighborhood. Programs to promote good health-related habits via the schools cannot hope to succeed without acknowledging the

-powerful influence of school culture and adopting educational approaches which build upon its positive aspects rather than ignoring it altogether. Likewise, school. personnel # must understand the "infra-curriculum"

represented by their own health-related behavior, and not expect this to be

any less influential than classroom instruction_ School. health promotion can take many forms: formal classroom

education,- iupervised 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 with their tasks of teaching basic

skills, many national parent, educator, and health-professional groups have urged, that all schools take action to strengthen health and safety

education. Such education must be integrated with, and reinforced by, many aspects of school culture and many parts of the curriculum.

Classroom lastruCtion

Because more than 95 percent of children and youths from 6 to 18 can be reached via the schools, there has always been a strong rationale for using schools as a site for formal instruction in health and hygiene. Health

education has been a regular part of school life for decades, and earlier in

the history of public education in this country it was considered one of the

basic subjects. There also have been periodic national efforts to define and revise the health education curriculum. It is interesting, for example, to compare the

recommendations jointly made by the American Medical Association and National Education Association in 1911 with those of the National School

Health Education Curriculum Study in 1967. Both were landmark

statements for their times. The 1967 recommendations, framed around the

113
fundamental concepts of growth and development, decisionmaking, social

interaction, and strategies to resist peer and media pressure, remain very

relevant in 1980, although their implementation has been far from

adequate in, most school systems. Even now, only 18 States require

comprehensive health education in grades K-12 (20).

Some progress has been made, nonetheless. In many school districts,

those responsible for health education are employing more sophisticated

approaches to reach their objectives, with measurable positive results.

Several recent studies have shown demonstrable effects, for example, from

innovative 'programs designed to reduce smoking among youngsters (21).

In their enthusiasm to find solutions to existing health problems and to

meet immediate needs, many voluntary groups and health agencies have

developed teaching materials on specific topics especially for school use.

Such efforts have helped fill a void, and are to be commended, but the

number of health problems deserving special consideration in the

curriculum has become so great that many of these teaching aids can only

be useful if they arc part of a comprehensive and sequential health

education program.. In the absence of a comprehensive program, school

administrators under community pressure to "do something" about drugs,

sex, smoking, alcohol, or other problems too often must respond with a

hastily scheduled 2-week unit or a lecture to cover a specific problema

problem often forgotten the next year in order to concentrate on

something else. Fragmented education efforts ofthis kind are not an adequate response

to the need for better health education. Federal, State, and local health

and education agencies need to promote a unified approach to health

teaching, organized so as to encourage coordination with other subject

matter and evolving sequentially through the school years in developmentally appropriate steps. Health promotion and disease prevention should

be emphasized, including the anticipation of experimentation with certain

behaviors at certain ages. Appropriate content areas for school health exluc....ation curricula are

many and diverse. They include, at a minimum, nutrition, exercise,

smoking, alcohol driving safety, human sexuality, family development, coping and stress management, and environmental conditions

affecting health. This is not as overwhelming a list as might be supposed,

because many of the same basic concepts and skills underlie appropriate

behaviot in all of these domaini.

The content of health education remains a matter for local determina;

tion. But Federal and State authorities, in conjunction with health

professionals and educators have done a good deal in recent years to

develop model curricula and teaching materials. Current Federal efforts to

stimulate and improve school health education are being carried out by a

variety of offices within the Department of .Health and Human Services

and the Department of Education, with some resulting problems of

fragmentation. There is considerable variation not only in subject matter

but in approach, from categorical (e.g., alcohol education) to more general

health enhancement (e.g., esteem-building, development of coping skills).

The Education Department now has an Office: of Comprehensive School

Health, which is in a position to coordinate all Federal school health

114

1 )

'Nor
education programs and to work with State and local education agencies

to develop such programs. In addition, through passage of the Health

Education Amendment of 1978 (P.L. 95-561), Congress paved the way for establishment of demonstration and pilot projects in comprehensive

school health education. As yet, however, 'no funds have been appropriat- ed to implement the new law. If school health programs are to be effective, improved preparation and

in-service training of teachers, school nurses, physical education instructors, and other school personnel also will be necessary. Elementary school' teachers typically lack training in this field, and only 22 States certify

secondary school teachers in health education. Similarly, in many cases school nurses and physical education personnel are not sufficiently

oriented to the potentiaL contributions they could make to preventive health education and health promotion, and are not given health

education roles in the schools. Public and philanthropic grants to, training

institutions and local and State education agencies for preservice and

inservice training could have a major effect in changing this situation.

Physical Education

School physical education programs are an area of vast unreal

potentiaL While adult participation in exercise and sports has 1

soaring in recent years, cutbacks in public school budgets have resulted in

a decline in the quantity and quality of school physical education

programs. Only one child in three now participates in a daily program of physical education, and the record is worse in many areas (22). Lack of

adequate programs is particularly notable in congested central cities. A

recent survey of New York State elementary schools showed four out of

five had not met State-legislated requirements for physical education in

the preceding year. Coupled with the prevalence of after-school television

viewing, this decline in physical education is cause for concern. One of

every six children taking a simple screening test designed by the Pr -dent's Council on Physical Fitness and Sports currently fails the test

It is important to reverse this trend, and also to increase the emphasis of physical education programs on lifetime fitness and health, maintenance

skills. School programs can have an impact, for both sexes, far beyond the development of specific athletic skills for competitive team sports. Team

sports help students learn to subordinate personal glory to group

achievement, but the skills involved in some individual sports, such as bicycling and hiking, also should be taught so that young people are not

dependent on the presence of others for physical activity. They should

learn to set and achieve personal standards of physical. performance as well as, or as an alternative to, competing against others. Physical

education instructors also should teach the proper responses in situations

of physical strain, techniques of relaxation under conditions of emotional

stress, and the relation of nutritional intake to physical and mental

activity. Implementation of school -based programs reflecting these principles

will require a reassessment by many communities of physical education
priorities. In some instances, communities may need to secure expert

advice and support from local, State, or national sports medicine and

fitness councils. The Panel believes that one group well-suited ;br a

leadership role is the U.S. Olympic Committee. Additional groups with

valuable expertise include the U.S. President's Council on Physical

Fitness, the American Academy of Pediatrics, the American Nurses'

Association, and others.

Health Education in School Health Services

School-based health services, whether they involve the traditional

school nurse or a full-service clinic, offer the potential for teaching

children about prevention, self-care, and the wise use of health services.

Part of this potential, alluded to above, is in redefining the role of the

school nurse so that she spends more time in teaching and counseling

activities relating to health promotion and disease prevention. School

nursing associations, in collaboration with other professiftal groups and

experts on prevention, need to examine this issue and devise a preservice

and inservice training agenda for the 1980's.

School health services can also teach children appropriate patterns of

health care use. Recent research in the schools of southern California

suggests that patterns of use of school health services are established early

in elementary school, with a limited number of children making most of

the visits to the school nurse (24). Some children may actually need more

care, but it is equally likely that the pattern reflects underutilization by

some and overutilization by others, as a function of different degrees of

classroom stress, vvilli nw-e. ess to seek help, or rapport with school health

personnel. Whatever the'ease, health services in the schools offer a good

vehicle for counseling children about personal decisions regarding use of

health services, whether for sick 'or well care.

A third important role for a school health personnel is to work with

students and teachers to increase understanding of the particular

problems of handicapped and chronically ill children. With the advent of

P.L. 94-142, the Education for All Handicapped Children Act, many

handicapped children now are being mainstreamed who previously might

have been in separate classes or institutions. These children often have

special health needs as well as learning needs, and effective integration

into normal classrooms requires orientation of other students as well as

sensitivity in addressing the health-related concerns of the handicapped

themselves.

ADOLESCENCE

In recent years, much attention has been given to adolescence as a

crucially important and often neglected period of the life cycle. Early

adolescence, which can be roughly equated with the ages 10-14, is a time

of rapid physical, cognitive, and emotional change, accompanied by the

often stressful shift from elementary school to junior high school or

116 I 1 -

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middle school, and concomitant entry into "teen culture." Later adoles- cence is a period of transition to adulthood, during which young people are introduced to a wider social and occupational world, and gradually

required to adopt fully adult norms of personal conduct Although adolescence is a life stage in which many forms of experimentation are necessary, socially adaptive, and to be encouraged, it is algo a

time when youngsters typically try out a number of *behaviors whichere

risky or may have unfortunate lifetime consequences. Some forms 'of health-related behavior, such as eating and exercise habits, may already have been set earlier in childhood. Others which are part of adulthood, such as driving conduct and sexual behavior, are formed either wisely or poorly during this phase of development Still others, including smoking

and alcohol and drug abuse, can be more like "time bombs" ticking away

through youth to explode years later in the form of chronic illnesses such

as heart disease, cancer, or stroke. Many health-related problems of adolescence result from immature

judgment combined with uncertain self-esteem and strong peer pressures. One such problem is unwanted pregnancy, which has grown with the dramatic increase in percentages of sexually active teenagers over the past

two decades. The topic of sexual behavior in adolescence is discussed in a

separate section below. Other behavioral _problems result from experimentation with personal habits which are prevalent in the adult world. Unfortunately, many of the

risk behaviors which pose a threat to adolescent health and life are deeply

embedded in the country's adult culture aim are therefore perceived by

teenagers as desirable symbols of independence, maturity, and sophistication. The most prominent examples are alcohol and tobacco use, and also use of mood-altering drugs, especially marihuana. Survey data suggest

that 70 percent of all 12- to 17-year-olds have experimented with alcoholic

beverages, 54 percent have smoked, and 31 percent have tried marihuana.

Experimentation does not necessarily lead to continuing use of these

substances. In 1979 the percentage of teenagers smoking, for instance, was

just 11.7 percentwell below the proportion of those who had tried

smoking at some time in their lives. This figure also represents a decline

from 1974, when 15.6 percent of all youngsters 12-18 years old were

current smokers. However, the trend for alcohol and marihuana use is not

so positive. Between 1975 and 1979, the percentage of high school seniors

reporting alcohol -use within the last 30 days increased from 68 to 72;

reporting recent marihuana use, from 27 to 36 percent. While a number of teenage behavior patterns have implications for

long-term adult health and longevity, some can and do result in immediate

death or disability. All of the major causes of mortality and morbidity

among teenagers are related to behavior and the social environment, and usually involve temporary misjudgment, anger or depression combined with newly acquired access to instruments such as automobiles and guns... Inappropriate use of alcohol and drugs often interacts with these factors to

multiply risk. While death rates for all other age groups in the United States have

declined steadily since 1900, those of young people ages 15-24 actually have increased by 11 percent since 1960 due to the high toll of accidents

117

is G
11111111MI

WW1 IN, OEMS NI

Males

Females

10

0

1 1 1

1979 1968 1970 1972 1974.

Year

Current cigarette smoking by youths 12-18 years of age, according to

sax: United States, 1968-79, selected years

Note: Current smokers -ere defined as who smoke one or more cigarettes per week.

1 -y

"wo
and violence among teenagers. Accidents (especially in motor vehicles).

homicide and suicide account for three-quarters of all deaths in this age

group. Among white ado'escents, accidents are the leading cause of death. two-thirds of then) in motor vehicles. Among nonwhite adolescents,

homicide is theleading cause of death. Increased suicide rates among teenagers, no less than homicide rates, are 'a tragic social problem. Between ages 15 and 24 years, suicide is the

third leading cause of death among males and fourth among females. For

10- to 14-Year-olds and 15- to 19-year-olds, overall rates have more than

tripled between 1950 and 1977. Suicide involving use of firearms has

doubled for the age group 15-24 since 1966 (25). In some cases these data

reflect the presence of major psychiatric disorders, but in many others

they reflect the above-mentioned interaction of factors such as temporary

stress or despondency, experimentation with alcohol or drugs, and the , availability of automobiles and guns. It is worth noting that theser;

estimates are probably conservative, because suicidal impulses _niay

contribute to many deaths identified as accidents.

Positive Influences

Those who have worked with adolescents have gradually come to

understand that enhancement of self-esteemof pride in the youngster's own 4.mpacities and accomplishments, which in turn encourages an

optimistic view of the futureis a most promising strategy for promoting

health-enhancing behavior. Adolescents are seldom impressed by admonitions about present dangers like automobile accidents (they "can't happen

to me") or by warnings of long-term consequences, such as a heightened

cancer risk from smoking. Similarly, it is very difficult for adolescents to

take actions that will put them out of step with others oftheir age. which

means, for example, that personnel trying to prevent harmful or promote healthful behavior often must focus_ on changing the group's attitudes

rather than the individual's.

While the influence of peer pressures on adolescent behavior is widely

recognized and well documented, it is also important to remember that

family membersboth parents and siblingsremain major sources of

guidance and are influential role models. Firm and steady guidance from

parents can be particularly important during early adolescence. This point

is often overlooked, as we are reminded by two leading psychiatrists, Drs.

Beatrix A. and David A. Hamburg: In an effort to foster the perceived value of independence in the

child, there may be a significant renunciation of parental prerogatives. This is largely inappropriate for the early adolescent ... generally, there is a heightened need for ;:,-parental stability and guidance at the time of major biological, sehool and social

discontinuity. The early adolescent Cannot possess tiZtt.7 competence

and mastery needed for full independence (26).

As adolescence progresses and youngsters renegotiate their relationships with parents and other family members as part of the gradual move

to independence, teenagers care deeply that they be able to manage at

119
least some aspects of the., iives with autonomy and privacy, as adults

would. This attitude has major implications for the design of educational

and counseling services to meet adolescent needs.

Important elements of health education and counseling for adolescents

can be provided through both the health care sector and the schools.

Adolescents need more information about the effects of their lifestyle on

their present and future health, but this information must be presented in

ways which are likely to influence their attitudes and behavior. Studies

indicate that the vast majority of adolescents already know smoking

causes cancer, that unprotected intercourse can lead to pregnancy, that

proper diet, exercise, and rest are essential for good health, and so forth.

The problem is that they do not always act prudently on the basis of this

knowledge, and often seriously underestimate the consequences of certain

types of risk. Recognizing. this fact, those most successful in working with adolescents

regarding their health have often designed innovative programs and

techniques for meeting the unique needs and values of the age group.

Effective counseling and education for teenagers can be found in health

clinics, multiservice centers, the schools, and- community programs

sponsored by religious groups, scout troops, and various private associations. There is no single "right" place or mechanism to teach adolescents.

Instead, a variety of approaches, with overall community coordination,

need to continue and be expanded. Primary health care providers obviously have an important role to play,

both in offering anticipatory guidance to adolescents and their parents,

and in helping to create and sustain community education efforts for

teenagers. Because so few adolescents see a doctor unless they are sick,

extra efforts arc needed from primary care physiciansgeneral pediatricians, family practitioners, obstetricians, and interniststo ensure that

any component of their practice time devoted to adolescents includes an

appropriate emphasis on preventive efforts and health promotion., including counseling.- Physicians also have a special responsibility to take

initiative in creating and strengthening health-related programs for

adolescents in the school and the community. The specialty of adolescent

medicine can continue to provide badly needed leadership in prevention

and health promotion for this age group, and counseling and education

directed at adolescents also should continue to come from a wide range of

nonspecialists and personnel other than physicians.

School Programs

For adolescents as for younger children, the schools offer a promising

site for health education. But students who find their studies interesting

and engaging are more likely than troubled students to be interested in

their health and to absorb important health messages. If school is a

-hassle," if the days are filled with boredom, if self-esteem is low,

alternative sources of satisfaction and of challenge will be sought, which

may include activities with a negative health impact.

Comprehensive, innovative school health education can promote

healthy habits among adolescents and discourage the adoption of health120
damaging behavior. But as previously indicated, there is much room for

improvement in most school systems' health education efforts. This is

particularly true of health education aimed at adolescents, which in the

past often has been fragmentary and generally perceived by the youngsters themselves as off target. There now are some programs under way in various school systems around the country which have proven effective in helping students

understand the relationship between behavior and health and in teaching

them to resist pressures from peers and other influences to start smoking,

drinking. etc. Most such program.: emphasize the active involvement of

students, the use of teenagers to counsel their me peers or younger children, and the teaching of coping skills to help children anticipate and

resist peer pressure. One example is in a school-based program in San Jose, California,

where 10th grade students worked with younger children in the 7th grade

to identify and diffuse pressures which encourage smoking. Two years

after the program commenced, partiCipating schools found a 50 percent

decrease in the number of younger children starting to smoke as compared

with control schools without the peer counseling program (27).

Another project which showed significant success was conducted in

Houston, Texas. Youngsters were tracked from seventh through tenth

grades as ,they were exposed to a series of videotapes, film and poster antismoking messages featuring adolescents ofabout the same age presenting

information or engaging in role-playing. During the years of the program

and in a followup study 2 years later, researchers found a significant

reduction in the onset of smoking (28). Schools and community agencies also are developing extracurricular

programs to channel the strong influence which peers have on health- related behavior. Such programs take different forms, including the

education of younger children by trained older students and the education

of age mates by trained students. Some ofthese 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 Minnesota peer group

model program called 'Teenage Health Consultants" provides informsdim and traming to adolescents who then become health educators and

make referrals within their peer groups (29). This program, replicated in

communities as well as in schools, is concentrated mainly on drug

use/abuse, human sexuality, mental health, food awareness, and community health resources. Likewise, family planning clinics, such as that offered by the city health department in Berkeley, California, have

developed model outreach education and inpatient counseling programs.

Education in Haman Sexuality

Among the most important, and also most controversial, topics taught

in the schools is sex education. Sex education is singled out for special

comment because of the importance of responsible sexual behavior to the

health and well-being of adolescents, and because this subject highlights

the need for families to play a more active role, along with health care

121
providers, cor.1 Imunity agencies, and the medianot just the schoolsin

preparing an: ,'acting young people. Althoue nage birthrate is now declining for all adolescent age

cohorts. sc. -.. ry among teenagers continues to increase. It is now

estimated t. -innately 50 percent of unmarried young women

15-19 years oid living in metropolitan areas have had sexual intercourse,

significantly rf.ore than the 30 percent reported a decade ago. Approximately one-third of sexually active teenage women get pregnant. a higher

rate than a decade ago even though there appears to be more use of

contraception. This fact may reflect use by teenagers of less effective

methods of contraception, or more frequent intercourse among those who

are sexually active, or both.

Among those teenagers who do get pregnant, the percentage who marry

before the end of pregnancy is decliningfrom 33 percent in 1971 to 16

percent in 1979. Of those who remain single, only about half have the

baby, as compared with approximately two-thirds a decade ago. The rest

either suffer miscarriages or opt for abortion (30). In 1977, some 31 percent of a reported 1.3 million abortions were

obtained by women under the age of 20. In fact, there were more

abortions (12,964) among girls under 15 than there were live births, and

among girls 15-17, some 135,801 pregnanciesor almost 39 percent of all

conceptionsended in abortion. About 17 percent of all infants born in

1977 were born to teenagers, and birth rates among black teenagers

remain much higher than those among whites. A. few more than twice as

many blacks as whites aged 15-19 gave birth in 1977 (31).

It has frequently beer assumed that a large percentage of teenage pregnancies are unwanted. The Centers for Disease Control have

estimated that in 1977, 46 percent of teenage births and 70 percent of all

teenage pregnancies were unintended (the difference accounted for by

abortions). However, recent studies indicate that unintended is not

necessarily' synonymous with unwanted, at least among those who carry

their babies to term. One Philadelphia study of black teenagers 13-18

years old found only 35 percent felt having a child would make life

"worse" or "ruined," while 22 percent thought it would make life better or

no different and 43 percent didn't know what the of would be. A

variety of emotional factors appear to be involved in teenage pregnancies,

including a desire for love and acceptance. for "proof' of maturity, for

status with peers.. Adolescents are seldom aware of the adverse impact

early birth will have on their own future education and income, or of the

expense and strain inherent in child rearing. Sexually transmitted diseases are another major health problem of

young people ages 15-24, who account for approximately 65 percent of

the estimated 8-12 million cases of these diseases each year (32). The most

common of the sexually transmitted diseases include trichomoniasis,

gonorrhea, nongonococcal urethritis, genital herpes and syphilis. Several

can lead to serious complications. In young women, for instance, pelvic

inflammatory disease from both gonococcal and nongonococcal infections is the leading cause of infertility and sterility; it afflicts an estimated

1 million people annually. Genital herpes can cause severe neurological

damage to an infant born to an infected mother.

122

- _.: 1

re,
240

230

220

210

200

190

10-14 years of.aga

15-17 years of alp t.

10

, 0

1966 1968 -1970 1972 1974 1976 -1978

Year

Number of births to women ages 10-14 and 15-17 years: United States,

1966-78
mmorlimma 15-17 years of age

frsismanm 18-19 years of age

-900

25 400

3

a

3°°

0

2°°

io100

0

1966

IIril I I III 1 1 1968 1970 1972 1974 1976 1978

Year

Live births to unmarried women 15-19 years of age, per 1,000 total

births, according to age: United States, 1966-78

1 3
The traditional response to the health threat posed by a high incidence

of teenage pregnancies and sexually transmitted disease has been a call for

improved sex education programs and more effective use of family planning servicesand indeed, this Panel would echo such suggestions. But we do not want to suggest that the underlying cause of the high

incidence of these problemsthe increasingly widespread sexual activity among adolescentscan be ignored. It is reasonable to suggest that a

reduction in early sexual activity would be the best way of reducing

teenage pregnancies and sexually transmitted diseases.

Teenagers are subjected to enormous pressuresfrom peers, older

friends and role models, the media and other influencesto engage in

early and frequent siPAual activity. Nothing in American society is more glamorized than sexual "love." and sources of adult guidance do not

always make clear that there are excellent reasons in addition to moral

injunctions to go slow in this area of life experience. The Panel believes

sex and family education coursesand guidance offered by parents. teachers, religious leaders, and health care providers--should explore and

clarify the implications for physical and mental health and for personal

growth and developrnei. of early sexual activity, of early pregnancy and

child rearing, of sexually transmitted diseases, and of abortion. Such data as are available indicate that there is very little communication about sex in the home. Among 7th grade girls, one study found that

20 percent of mothers had never told daughters about menstruation, 50

percent had not discussed the male role in reproduction, and 68 percent had not discussed any aspect of birth control. This is in spite of the fact

that the impact of parental communication about sex has been shown to

be significant. Research has indicated that strong supportive family ties

help to -innoculate" teenagers against early pregnancy. Even minimal sex

education from the parent is associated with postponement of age of

.initiation of sex activity (33). Research suggests that school and

community sex education program, which involve parents actively and

seek to improve parents' communication with their children would be

helpful. Furthermore, the experience of many communities around the

Nation indicates that active involvement of parents in the development of

school-based sex education courses often crucial to their acceptance and

effectiveness(41). Sex education is now fairly widespread in Amei ican schools. Seven in

ten never-married women aged 15-19 have had a sex education course.

and about half have had courses which included some teaching about modern contraceptive methods. Six in ten have had t ome formal

instruction about venereal disease and seven in ten have had detailed

information about the menstrual cycle (34). There is, however, still

considerable roorii for improvement in the provision and scope of sex

education programs in the schools. Because sexual learning is social learning, it must be understood

broadly as a life-long process beginning at birth and continuing into old

age. Very little of the information, attitudes, values, and behavior patterns

important for understanding sexuality are learned by children, adoles- centsor for that matter adultsin a formalized manner. Most schoolbased approaches to sex education remain more narrowly "reproductive

125
education," meager in content. limited in scope, and too late in being

presented. Rarely do they provide opportunities for youngsters to discuss

aspects -11 sexuality relevant to decisionmaking and self-understanding.

such as affection, love, emotional intimacy, body image. gender roles,

dating, marriage. divorce, family responsibility, and lifestyles. Moreover.

parents often do not provide such information to their children. In

general. neither the college professor. nor the businessman, nor the

assembly-line worker presently talks to his or her child about these

matters (35). The Panel therefore believes that sex education programs must address

more than the elemental facts about human reproduction. Such programs

should cover the. health implications and life impact of sexual behavior;

the effectiveness and risks of various contraceptive methods, including

abstinence; the physical and emotional risks of abortion; the emotional

and social ramifications of sexual activity. They should also focus on

clarifying personal values, maintaining self-esteem, and developing responsible interpersonal relationships. We also believe that abstinence from

early sexual intercourse should be treated as not merely acceptable but in

most cases as preferable. Likewise, young people need repeated opportunities to discuss the same

information. As youngsters get older, their bodies change, their social

awareness changes and they have new feelings to understand and cope

with. Too many parents and ringessionaLs subscribe to an "innoculation

theory" of sexual learningone discussion will do it. In fact, information

on reproduction at the age of 10 or earlier has a very different meaning

than the same information at age 17.

There is a strong need for educational efforts to reach adolescent males

on these issues as well as females. Sexuality is not just a women's issue. It

is notable, for example, that less than 1 percent of Planned Parenthood

services reach males. Although school programs remain an important focal point for

eaucational programs, it is not enough to expect schools alone to assume a

teaching responsibility. Health care programs and youth programs

throughout the community, as well as the media, should incorporate iat

least some elements of health promotion in regard to sexual conduct.

Role of the Media

The mass mediaespecially television and radiocan help shape

healthier behavior among adolescents, not only in regard to sexual

conduct but also on a wide range of other matters. Entertainment

programs. such as popular situation comedies, offer an excellent opportunity for presenting health information in a format that appeals to a wide

range of viewers. Radio stations specializing in rock or disco music also

reach teenagers of all socioeconomic levels and can be used to disseminate

health-promoting messages. To be effective, however, such messages must.",

be carefully tailored to adolescent concerns and delivered in a way that

captures the teenager's attention. In addition to working with the media in

developing health promotion material, the Panel would urge that groups

126
concerned about adolescent health discuss with teleVision scriptwriters and network and local officials the content and balance of both programs and advertising. As Norman Lear, the television producer, told an Action

for Children's Television -Conference (36): We have learned that more people will absorb information when it

is couched i=s entertainment.

A half-hour documentary on seat belts in automobiles will make

only so many converts, largely because the audience is smaller. but also because people resist being lectured' to. But have Archie Bunker or Fonzie or Mork or Mindy strap themselves into a seat belt, and

there will be a run on seat belts-in stores everywhere within the week. The question, then, is how to get more information, more positive

attitudes about humanity. and more accent on better values into the mainstream of television programming. The first thing is to work harder at raising the consciousness of network programmers,

independent producers, actors, directors, and writersall those who

contribute to the media.

POLICY IMPLICATIONS

Previous sections of this chapter have reviewed health- rcla ted behavior of various age groups, commented on education and counseling needs

relevant to each, and mentioned teaching strategies of demonstrated

effectiveness. Implicit in this discussion has been the notion that, although

much health-related learning takes place via family and peers' outside of

formai programs or teaching efforts, there are five institutional structuresthe health care system, the 'schools, the media, thcworkplace, and

the community through which public policy may exert a- positive

influence. In making recommendations relevant to these major institutional

sectors, we arc mindful of several general facts. First, although health-related behavior has multiple determinants, and

the influences of socialization and cultural transmission are certain to be

more powerful in cumulative effect than any single program or policy to

effect change, health education nonetheless can be a very effective tool When :'educational ventures are properly designed and executed. It is the Panel's impression in reviewing the results of various recent demonstration projects that much more is known about what makei health

education effective than is being applied. Just as health-related behavior has multiple determik-rants, so behavioral risk reduction is best achieved through a multifaceted. approach. Messages communicated via more than one setting or mechanism can have a

cumulative impact. Health care providers, schools, mass media and the

community are more likely to succeed in influencing behavior if they

coordinate their efforts, or at least reinforcerather than contradictone

another_

It is also true that information alone rarely produces behavioral change. This means that we cannot expect to change important behaviors such as

use of prenatal care, eating habits, patterns oforal-hygiene, contraception,

127
f.Mt 30 f F simply by making information available about them. It is also

.rat iv - e that inciividtxrds can be well taught at little or no effort or

Arr

4 without expenditure oftime. Effective educational and counseling

40-

4 *44 es will continue to require careful community-wide planning,

tive design and execution, and focused followup evaluation.

if efforts to help individuals adopt desired behavior are to be

on the complex realities of life, and on available evidence about

What works in health education, then greater emphasis must be placed on

approaches which: address the practical limitations which individuals face in trying to

act ilk health-enhancing ways direct attention to institutional and other higher level change in

addition to ; . change

emphasize decisionmaking over behavioral prescription,

and avoid unethical intrusions on personal freedoms

reduce the barriers to individual action, such as requirements of

time, undue technical knowledge, effort, and cost

are based on systeniatic assessment of the causes of behavior

which contribute to the heZth problem in question

focus on the full cycle of behavior change, from assessment of

factors predisposing an individual to certain behaviors, to analysis

Of what might promote change, to reinforcement of change when

it occurs

involve the group or groups to be affected in program design and

implementation meet the minimum threshold level of program effort needed to

are

an impact. These are some of the basic attributes of any program or policy to

enhance personal health-related behavior.

o

Health Care Settings

As noted throughout the chapter, health care settings are obvious sites

for initiating health education; guidance, and counseling for pregnant

women, children, and adolescents. Moreover, the role of health care

professionals in initiating, supporting, and participating in such efforts

may extend beyond the health care delivery site to the school or to other

community settings and programs. Because many people place high value

on health information from health care providers, the health professions

are is an unusually favorable position to offer effective health education

and counseling. The Panel therefore recommends that regardless of orgaili7-ational

setting, primary health care for children and pregnant women should

place greater emphasis on patient education, guidance, and counseling

directed to parents and children, especially as the elate to health

promotion and disease prevention_

Family planning services should include a substantial component

of counseling and education.

Counseling and anticipatory guidance about behavioral risks

should become an integral part of all prenatal care, and

128
seeking to change behaviors such as smoking and alcohol use

should be assisted15y providers directly or through referrals. The availability of childbirth education should be increased, with

special efforts to reach low-income and high-risk women and

couples who typically have not had access to adequate preparation for childbirth. Increased emphasis should be given in the health care system to parent education, guidance, and counseling, particularly in the vulnerable perinatal period and during infancy. Parents having difficulty in adequately nurturing and caring for their children

should be provided with continuing counseling, education, and

support. Health professionals should assign high priority to health education, guidance, and counseling for preadolescents and adolescents,

and their families. Health services for these groups should include appropriate education and counseling on human sexuality, and

the risks involved in behaviors such as smoking, alcohol use, and

use of drugs. In making these recommendations, the Panel acknowledges that

substantial attitudinal, financial and organizational barriers impede their

full implementation. These are discussed in later chapters. Access to health care providers remains episodic and crisis-oriented for some

populations, and as yet only some physicians and other primary health

care personnel see it as their role to spend a significant component of time

on health promotion and primary prevention. Techniques of counseling and education that deserve added emphasis in

health care settings include one-to-one counseling, group discussions,

"exit interviews" (as in the use of a nurse or trained lay person in family

planning clinics to clarify and reinforce health recommendations),

outreach services, and telephone-access and cassette libraries of recorded

health information_ Significant involvement in school and community

health promotion activities remains highly desira as the Pan el sees it,

for private practitioners as well as other health care prcwiders.

To reinforce and further stimulate health education and cowls' elint, via

the health care sector, the Pane f wther recommends that Federal

poLic-y-makers take the follosvin s as pa.rt of a broad national strategy

to introduce appropriate emphasis on health- behavior in health service

programs- Maternal and child health authorities in the Department ofHealth

and Human Services should expand the Department's capacity to

convey specific educational "messages" regarding information which is important for the promotion of child health, including

such content areas as breast-feeding, infant nurturance and

stimulation, continuity of parenting, nutrition, child safety, and

adolescent behavior. These messages should be disseminated

widely via Department programs, the media, voluntary orvni7a -

tions, and health care providers. All standards for quality of care should reflect the importance of

counseling and education for parents, children, and adolescents,

and all federally supported health service programs should be

129
monitored to assure adequate emphasis on these components of

care.

Further support should be given, through various Federal health

programs and policies, to counseling and education related to

family planning, prenatal and postnatal parent counseling, childbirth education, and guidance for the parents of children and

adolescents_ Training in the content and methods of counseling, guidance, and

education for parents, children, and adolescents should be made

part of all training programs for health care professionals, and

information should be disseminated by the Department of Health

and Human Services, as well as private foundations, professional

associations, and certifying bodies regarding successful clinical

training programs for the teaching of parent and patient education

to health professionals, so that other programs can be strengthened.

Continuing education programs should give increased emphasis to

counseling, guidance, and health education skills for all health

professionlals; especially those practicing in primary care settings.

The Schools

The schools are receiving renewed attention as sites for disease

prevention and health promotion just when many are under severe

financial constraints and are hard-pressed to accomplish other basic tasks.

However, certain 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.

The Panel deeply respects the traditional autonomy of local school

districts in making curricular decisions. We nonetheless believe that all of

the Nation's school districts should have appropriate and high quality

health education and counseling. It therefore seems to us essential that

public education authorities at all levels should make a strong commitment to promoting healthful behaviors among children and better

understanding of the determinants of lifelong health.

Education regarding health should be an essential component of

the school curriculum at all grade levels. School programs should

assume a developmental perspective, encourage active involvement of parents, teachers, nurses, nutritionists, physical education

personnel, and home economists, and be designed to enhance

student decisionmakingabout health behavior.

Local school boards, superintendents, and elementary and secondary school principals should take whatever steps are necessary

to ensure strong working relationships in health education

among school personnel, parents, and various community health

resources outside the schools, including local health care

providers_

130
Physical education programs in primary and secondary schools

should include instruction in individual exercise, lifetime fitness,

and other health maintenance skills in addition to competitive

team sports. Such programs should be designed to foster the

student's own sense of self-esteem and competence. Every elementary school teacher should receive adequate preparation in health education as a prerequisite to certification, including

exposure to curricula, methods, and materials, and instruction in

the role of health services in the school and community. In

addition to understanding general health content, teachers should

gain basic skills in managing school-related problems of chronically ill or handicapped children and assisting these children in the

classroom.

Science teachers, physical education instructors, school health

personnel, home economists, and others who have special opportunities to provide health education should be encouraged by local

school boards, superintendents, and paincipals to seek relevant

preparation and continuing education. Parents should play an active role in informing z.nd deepening the

understanding of young people about sexual behavior, both as

participants in the development of school sex education courses

and directly within the family. Courses in human sexuality, taught

by competent persons and with the full participation of parents,

should be available in the schools. Developmentally appropriate

courses should address more than just the elemental facts about

human reproduction, dealing with sexual development in the broader context of social and emotional development, value

formation, and responsible interpersonal relationships.

These steps will require vigorous commitment by local and State school

boards, superintendents, principals, teachers, and other school personnel.

They also will require the full support of local health care providers, and

willing collaboration by State health authorities.

The Federal Government also can play a significant role in advancing

school health education, by developing and disseminating curricula,

supporting demonstrations, and otherwise facilitating knowledge transfer.

No consistent Federal coordinating mechanism or policy with clearly.,

articulated school health objectives has yet emerged. Current Federal efforts to stimulate and improve school health

education are now being carried out by a variety of offices within DHHS

and the Department of Education, including the National Institute of

Mental 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 Pregnancy

-Programs,. the )ureau of Health Education, and the Office of Maternal

and Child Hea-4h. As noted earlier, there is wide variation not only in

subject matter but in approach. Coordination of health instruction, health services, and food programs

has been difficult to accomplish because of the traditional separation

131
among eductors, health professionals, and nutritionists at all levels. There

are at least a dozen Federal agencies supporting some aspect of school

health, with little coordination orjoint planning among those agencies, or

between them and the States, who provide an estimated $300 million

annually for school healthactivities.

The numerous curricula developed for adolescents in the school setting

have had limited evaluation, particularly in measuring subsequent

behavi6ral changes. Their successes and failures need to be examined so

that professionals from education and the social sciences can determine

which approaches show the most promise. The extent to which particular

methods are effective with such issues as food habits, drinking and drug

use, accidents, pregnancy among young teenagers, dropping out of school,

and so forth is of major interest.

The Panel supports a unified, comprehensive approach to curriculum

development and technical assistance to State and local authorities for

health promotion activities. Acknowledging that the Departments of

Education, Health and Husizan Services, and Agriculture all have a

legitimate and important stake in school-based health promotion activities, we nonetheless believe it is appropiate that there be strong

coordination of these efforts at the Federal level, to avoid duplication of

effort and assure that learning is shared regarding program effectiveness.

The principal obstacle to such coordination at present, we befietre, is the

absence of a . strong health education focus in the Department of

Education, to complement the efforts of program managers in DHHS and

USDA. The 'Department of Education now has an Office of Comprehensive School Health, but this office remains skeletal because the School

Health Education Program (P.L. 95-561, Part I) has not yet been

adeqoately funded: We therefore recommend that Federal authorities strengthen their

commitment to leadership in health education by taking the following

steps: Appropriation of adequate funding for the School Health Education Program (P.L. 95-561, Part 1), which provides for State and

local education agencies to establish demonstration and pilot

projects in comprehensive school health education.

Increased support for the Office of Comprehensive School Health,

so that adequate technical assistance can be provided to State and

local education agencies, including the dissemination of successful

health instruction curricula. Special emphasis should be given to

familiarizing school personnel with effective programs for

adolescents.

Strong interagency coordination between the Federal Office of

Comprehensive School Health in the Education Department and

relevant counterpart officeis in the Departments of Agriculture

and Health and Human Services.

The provision of incentives for State and regional education

agencies to employ professionals with expertise in health education to give leadership in planning, coordinate teacher training

132
and curriculum dissemination, stimulate extracurricular programs,

and assure parent involvement in local programs. Strengthening of health education components in Head Start

programs and other federally supported preschool programs,

thR3ugh regulations, guidelines, dissemination of model curricula,

and project monitoring, including emphasis on the involvement of

parents_

Television

As we have noted, the mass media, and particularly television, have a

tremendous potential to influence health. We believe that the Nation

should be concerned about the effects of television from two standpointsrust that it do no harm, and second that its power be used to

in health-related behavior.

There is widespread agreement on the need to limit or at least

counteract the negative effects of advertising and certain program content

viewed primarily by young children. But disagreement continues regarding the degree of protection needed and the choice of methods. There are

a number of methods that can be used to change television approaches,

including complete and partial bans on certain types of advertising nr

behavior shown on programs; limitations on particular promotional

techniques or behaviors; limitations on the number of commercials for

given types of products; health warnings within the context of a given

commercial; counteradvertising; and modeling of positive behaviors.

The advanta:-,4s and disadvantages of these alternative strategies have been discussed by the staff of the Federal Trade Commission in the

context of the proposed "Children's Advertising Rule" (37) and by the

Federal Cor ununications Commission (38). Both of the Commissions

have concluded that while bans are remedies of 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," however, are

constitutional questions and a history of caveat emptor.

The Panel does not possess the expertise to decide whether a ban on

certain forms of television advertising or content is appropriate. We do,

however, see the continuing need for a Federal regulatory presence with

the power to enact such a ban should evidence of its importance be

compelling. Counteradvertising can provide supplemental nutritional, safety, and

other health information. The major test of the effects of counteradvertising occurred during 1967-70 when the Federal Communications Commission's Fairness Doctrine led to $60 million worth of free television time in

one year for antismoking campaigns to counter cigarette advertising.

Although there was four times as much advertising for cigarettes as

against them, there was a decline in per capita cigarette sales in the United

States (39). Consumption increased again after both cigarette advertising

and most antismoking messages were removed from television (40). The

133
deterrent effect was less strong among adolescents, perhaps because the

antismoking messages concentrated on health consequences only and did

not appeal to attractivenessthe more salient motive for this age group.

The Panel also concludes that regardless of how many special children's

programs are produced with private or public support, efforts must

continue to assure that an appropriate proportion of the routine

programming of all major television stations is of interest and benefit to

children. Although some segments of the population are well served by the

broadcasting system, the children's market is dramatically underserved.

The FCC believes that there is considerable demand for and benefit to

society from age-specific educational programming, but that this demand

goes unfulfilled and the benefit goes unrealized due to children's limited

appeal to the advertiser and the limited number ofbroadcast outlets.

In addition to these approaches, there are several other important

avenues of health protection in television viewing_ These include cable

channels designed explicitly for children, with no controversial advertising

or violent content; the fostering of critical viewing skills in children; and

special efforts to create alternatives to television viewing, especially for

disadvantaged children in neighborhoods with few recreational facilities

or organized activities. These are discussed fully in one of the Panel's

commissioned background papers (41).

In summary, the Panel recommends that further national effort be

devoted to countering media pressures on children, adolescents, and

pregnant women to adopt behaviors deleterious to their health. Parents,

communities, and advocacy groups should take the following steps:

Continue and broaden the dialogue with national television

networks regarding commercial advertising, programming balance, and the modeling of health-related behaviors. Better and

more systematic ways should be found to provide accurate

information about health and health-related behavior to the

creators of television entertainment programs

Actively assist in the development of critical viewing skills among

children, particularly with regard to commercial advertisements.

Encourage parents to monitor television viewing, to emphasize

selective rather than continuous viewing, and to discuss programs

and commercials with their children. Parents also should be

encouraged and supported in providing alternatives to television

viewing, including recreational opportunities.

Promote the endorsement of healthful practices and products

through the media by professional organi77tions and celebrities

held in high esteem by children and adolescents.

Federal and State authorities and private foundations should support

efforts to strengthen the role of television in promoting maternal and child

health. In particular, public and private policymakers should support:

Increased research on the effects of television on cnudren,

including efforts to analyze network and local programming.

--Periodic national reports should be fmanced by the Department

of Health and Human Services and the National Institute of

134 1 f-# 4- L.)
Education on the content and behaviors enacted in programs and

advertising directed at children. Adequate programming for children as one of the criteria for

license renewal of television stations.

Reestablished authority of the Federal Trade Commission to

investigate the fairness of television advertising and program

content in their effects on children and to promulgate regulations

in regard to these matters whenever appropriate. Continuation of high quality educational programs with major health components, and development of new programs with Federal support. More health promoting public service announcements during

children's and adolescents' prime time" (e.g., Saturday morning

and during after-school and early evening hours). Media campaigns to provide information about special risks to

pregnant women of smoking, drinking, and improper drug use. Television can be a potent forte for health promotion, as exemplified by Sesame Street, the Electric Company, and other programs which function

as good alternatives to programs with objectionable advertising content. But belief in the power of television without consideration of its

limitations also has led to some expensive failures. In reviewing the evidence on education via television, the Panel concludes that the production-of high quality programs for a large number of schools and other local agencies that would never be able to afford

them is a legitimate part of government health education activities, but given the magnitude of these expenditures, continuing research and

outcome evaluations ought to be required. The uses of televisiori are expected to change as package programming, video discs and cable television become common. These alternate systems are much less expensive and provide a greater opportunity than broadcast

television to reach specific populations, and they are also easier to

combine with other educational methods. These avenues need to be

e x p l o r e d in t h e f u t u r e as w e l l a s p rogramming for private and public

broadcast television.

'131-1.14S is in the process of redefining its role as a "wholesaler" of health

information.. This function is broader than simply deciding what messages should be presented via television, or considering the best means for communicating via other intermediary or "access" groups, such as health

care institutions, labor unions, PTA's, and community organizations. Federal support is being seen as a way to build consensus, reach high-risk

groups, and assure concerted action. The role of television as a part of this

large process, and coordination of television messages with those

communicated elsewhere, is an important matter which deserves further impetus. Attempts to promote good health via television can be

substantially strengthened by a broad and coordinated Federal strategy

involving careful definition of messages for particular groupsincluding

children, adolescents, and pregnant womenand multiple means for conveying these messages to the groups who need to absorb them.

135 1 4
In Summary, the Panelrecommends a strengthening ofboth private and

public support for health-promotion activities via television. At a

minimum these should include:

Continued support for high quality educational programs with

major health components, and development of new programs

under Federal support Sponsorship of further health-promoting public service announcements for children, youth and pregnant women, targeted to prime

time mcluding Saturday morning) and to after-school hours.

A vigorous campaign to produce special health-related messages

for particular groups of children, teenagers and pregnant women

at risk, with integrated strategies for dissemination via television,

as well as radio and the written media, simultaneous with

dissemination via health care providers and schools.

The Workplace and the Community

Among the most significant changes in American life, noted earlier in

the report, is the dramatic increase in numbers of women in the

workplace, including large numbers of mothers. This change makes the

workplace a more opportune site than ever before for providing family

planning services, prenatal care and counseling, and anticipatory guidance

for parents. A significant number of corporations and government

agencies have made serious efforts to assist their employees in these

Matters, as well as helping balance the demands of work and private life

by offering flexible-time work arrangements, child care, and various

support services to parents. The Panel believes that these efforts are highly significant, and should

be enlarged in the future. Accordingly, we recommend that all private

corporations and government agencies give explicit attention to the needs

of their employees for family planning services, prenatal care, and other

forms of support for parents. Model programs such as those sponsored by

the March of Dimes Birth Defects Foundation are one example of what

can be done by way of counseling in the workplace.

Formal and informal 015mraunity associations and groups also continue

to be an important source of support for parents, families and young

people. The community offers a scale and familiarity better suited to

certain forms of education and counseling than larger institutional

structures.

The wide variety of organizations and lay self-help groups to be found

in most cities and townsincluding religious groups, the Boy and Girl

Scouts, Boys and Girls Clubs, 4-H Clubs, PTA's, Candlelighters, Pai-crits

Anonymous, women's health collectives, food cooperatives, and numerous

other groupsattest to the vitality and usefulness of community organizations in our country. Many of these groups currently sponsor, or could

sponsor, significant health promotion activities.

Such local groups are 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

136 74
pluralistic community and society. Programs with a strong commitment to

empowering individuals, families, and community groups should, there- fore, be given a high priority. Broad involvement of families and

individuals in solving their own problems is to be encouraged. 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 adopt healthful behaviors. Importantly, when people work

together they are more likely to be successful in bringing about needed

changes in institutions and other resources that may expand individual

options. Many strong informal family and community networks already

exist and perform significant and positive health promotion roles. These

should be preserved and strengthened, or created if they do not already

exist.

To some degree, public authorities can foster attention to health-related behavioral issues by such groups. One example of federally provided

incentive to positive action is the recent risk-reduction demonstration

grant program of the Centers for Disease Control, which provides modest funding for community-based efforts in health promotion (42). But many

types of voluntary and informal organizations are difficult to create or

render more effective via public policy. Instead, they depend upon the

initiative and energy of private citizens. An important social network also has been created by agricultural extension agencies in many of the Nation's rural areas. Agricultural Extension has a unique and only partially realized potential for health

education in rural communities. Its mission is education and community

development to help people improve their social and economic well-being,

and olle of its five goals is family health. There is a cohesive, credible and

well-staffed network of home demonstration agents and youth workers

which in many States still reaches small farmers and others. Health programming 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 in the 1970's

eight States (Arkansas, Louisiana, Pennsylvania, Ohio, Virginia, Maryland, Missouri, and Wisconsin) received special Federal funding for

consumer health education. The Panel regards such efforts very favorably,

and believes they should be enlarged in the future. In summary, whether through self-sustaining efforts or with public

support, the Panel urges that voluntary associations and community

agencies renew their efforts to promote appropriate community-based

education for parents. Education programs and activities in community

settings should focus on a wide range of health promotion goals, and

should not overlook: Widening the availability of infonnal support groups and net- works for pregnant women, new parents, parents of chronically ill

or handicapped children; parents involved in child abuse and

neglect, and other groups of parents with strong common needs

for education and support. Increasing the cooperation among private industry, local organi- zations, and the schools in order to introduce health-related

/ 4 0 137
content to community activities of major relevance to adolescents,

including recreational opportunities and job training.

Further developing health education and counseling via the

Cooperative Extension Programof the Department ofAgriculture,

to take full advantage of the network of agricultural extension

workers in reaching rural families.

Such efforts should receive the full assistance, of community health care

providers, the schools, and civic leaders.

REFERENCES AND NOTES

(1) See, for example Brink O. G. and J. Kagan. Constancy and Change in Human Deveicptnent

Cambridge, Maas.: Harvard University Press. 1960; Lip' aim J. Growing Up Forgotten: A Review, of

Revearch and Programs Concerning Early Adolescence: A Report to the Ford Foundation.

Lexington, Maas.: Lesinpon Books. 1977; and White. B. L. The First Three Years of Life.

Englewood CUM, NJ.: Prentioo-Hall. 1975-

(2) Onelletaa E. M., H. L. Resiat, N. T. Romicia. and L. Weiner. "Admire Effects on Offspring or

Manama .Atcohol Abuse During Pregnancy.- New Eergland Journal of Mertieirie 297: 528-530.

1977.

(3) American College Cf Obetetricians and Gynecologists. "Cigarene Smoking in Pregnancy."' The

ACOG Technical Badkatin . No. 53. 1979.

(4) Ranenieria . 3. L.. ed. Drug Abase in Pregnancy and Neonatal Effect St. Louis: C V. Mosby Co..

1977.

(5) Doering, S. CI- and D. R. Entwistle- "Preparation During Pregnancy and Ability to Cope With Labor

and Ddivery." American Journal oi. Orthopsychiatry45: 825-837. 1975-

\ (6) Entwide. D. and M. C. Bieber. 'Preparation for Childbirth and Parenting." In Fernalies Today: A

\ itesgorcal sampicr on Familiar and Children. Vol. L E. Corfunto. ad. Warhinpon., 1).C.: U.S.

Governmeut Prireing Office, DREW Pub. No. (ADM) 78-815, 1979.

Wisrilroa, B. and: C. Baer. Tbe Obstetrn'S Opportzteig: Transkaang 'Stant is 13est'' From

Theory SO Practice. Working Paper No. 11. International lorugrains. New York: The Population

- =1. July 1960. (5) Hannan. D. and 0. G. Beim, Jr. Learning to be Par Prineipks. Ptegossns. and Methods.

BeWerty Halls: Sage PubLicatiens. Inc- 1980.

(9) Floinici. R. and J. C. DeFries. -*Genetics and Intelligence: Brant Data-- Intalligenee 4: 15-24.

1960.

(10) Brameltosii. T. B. Infants and Mothers: Differencesin Development New York: Delacorte 1969.

(11) McCormick. M. C.. S. Shapiro. and B. H. StareekL "Factors Affecting Maternal A...gem:lent of

Infant Development.' Johns Hopkins University, submitted for publication.

(12) Robert Wood Johnson Poundation. Special Report- Child Abuse: Slow,b, Aninvers Begin to

Emerge, pp. 9-14. Princeton, NJ.: Robert Wood Johnson Foundation. February 1977.

(13) Helfer, R. E. and C. H. Kempe. Child Abuse and Neglect. Cambridge, Mass.: Ballinger Publishing

Co.. 1976.

(14) Masnick, G. and M. J. Bane The Nation's FanWies: 1960-1994 p. 129. Cambridge, MASS.: Joint

Center for Urban Studies of MIT and Harvard University, 1980.

(15) Action for C:hiliAren's Television- Critical Issues for a National Agenda: Childreit's Television. p. 2.

Paper prepared for the Commission on the National Agenda for the Eighties- Newtonvige. Mass.;

ACT. Mimeographed. undated.

(16) U.S. Federal Communications CommissiOn. Television Prosparsuning for Children: A Report of the

Clarldrett's Television Task Force. Washingtcer. D.C.: U.S. Government Printing eake, October

1979.

(17) Commode., G. A. "Television and Its Viewers: What Social Science Sees." Santa Monica, Calif.:

Rand Corporation. 1976. (lit) U.S. Federal Trade Commission. FTC Staff Report on Televn Advertising to Children.

Washington. D.C.: U.S. Goverimient Printing Office. 1978.

(19) Pahner. B. B. and C. E. Lewis. "Development of Health Attitudes and Behaviors.- Journal of

School Health 46: 401-402,1976.

(20) Select Panel for the Promotion of Child Health- Better Health for Our Children: A National

Straavy. Vol. In_ Washington. D.C: U.S. Government Printing Office, 1980.

138 -1 1
(21) McAlister.. A. L "'Tobacco. Alcohol. and Drug Abuse: Onset and Prevention-4r In Healthy .People:

77att Surgeon Csomantrs Report an Health Promocion and Disease Prevention. Vol. IL pp. l97-206.

U.S. Department of Health. Education. and Welfare. Public Health Service. Washington. D.C.:

U.S. Government Printing Office, 1979. (22) U.S. Department of Health. Education. and Welfare. Promoting Health/Prevenning Disease: Objectives for the Nation. Washington. D.C.: U.S. Government Printing Office. 1980.

(23) U.S President's Council on Physical Firmest and Sports. Plrysical Fitness and Exercise, p. 4. Draft

Working Paper. 1979-

(24) Lewis, C M. A. Lewis. A. Lorimer, and B. B. Palmer- -Child-LnitiSted Care: The Use of School

Naming Services by Children in an Adult -Free' System." Pediatrics 60: 499-507,1977.

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315-320, August 1980. (26) Hamburg, D. A. and B. A. Hainburg. -Stressful Transitions of AdolescenceEndocrine and Psychosocial Aspects.- In Society. Stress and Disease. Vol. 2. L. Levi. ed. London: Oxford

University Press, 1975. (27) McAlister. A. L. C. Petty. - and N. Maccoby. "Adolescent Smoking: Omet and Prevention--

Pediatrics 63: 650-65S. 1979.

(28) Evans, R. I.. A. H. Henderson. P. C. Hill. and B. E. Raines. **Current Psychological. Social. and

Edam:bona' Programs i n Control and Prevention of Smoking: A Critical Methodoiogical Review.-

In AtheroacksosiS Reviews. Vol. 6. A. M. Gott° and R. Paeoletti. eds. New York: Raven Press.

1979-

(29) Jordan. C. V. and S. L. Valle. 'Teenage Health Consultants.- Synergist: 43-47. Fall 1978. (X) U.S. Department of Health and Human Services, Center for Disease Control. -Teenager Childbearing and Abortion PatternsUnited States. 1977.- Morbidity and Mortality Weekly

Report 29: 157-159. April 11,1980-

(31) Zclniek. M. and .1. F. Kantner. **Scusal Activity. Contraceptive ise, and Pregnancy Among

Metropolitan-Area Teenagers: 1971-1979.- Family FhinniAs Perspectives 12: 230-238. September/Oetober 1980.

(32) National Center for Disease Control. Venereal Disease Division. Public Health Service. Sexually

Transmitted Diseases ISM Fact Sheet. Annual Report. 1979. Atlanta. Ga.. 1980.

(33) Fox. G. L. -"The Family's Influence on Adolescent Sexual Behavior?' Children Today 8: 21-36.

1979. - (34') Zelnick. M. -See Education and Knowledge of Pregnancy Risk Among U.S. Teenage Women.-

Family Plassnizqg Perspectives 11: 355-357,1979. (35) Roberts. Elizabeth. ed. Childhood Sexuality: The Unwritten Curriculum. Cambridge, Mass.:

Ballinger. I9110. (36) Eighth Annual Symposium. Action for Children's Television- Children and TV. The Health

Connection. Washington. D.C.: March 19-20,1980.

(37) U.S. Federal Trade Commission. FTC Staff Report o- Advertising to Children, pp.

42-50. Washington. D.C.: US. Government Printing Office. 1978.

(M) U.S. Federal Ccenenunications Cominissinn. FCC Feedback. Washington. D.C.: U.S_ Govern/nen:

Printing Offace. February 19,1980. (39) Kozlowoidti, L. T. "Psychosocisl Influences on Cigarette Smoking." In Smoking and Health: A

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Washington, D.C.: U.S. Government Printing Office. 1979.

(40) Smith. F. A. at aL - Health Information During a Week of Television.- New Fngland Journal of

Medicine 286: 516-520,1972. (41) Mullen, P. D. '"Eklinvionil Aspects of, Maternal and Child Health: Nartral Influences and Educational Intervention." In Better Health For Our Children: A National-Strategy. Vol IV.

Washington. D.C.: U.S.. Government Printing_Offics, 1981. (42) The legislative base of dame grant programs is found in Public Health Service Act. P.L. 96-184, Sec1703. and Pi- 95-626. Sec. 402(A)(2).

139
CEIAPTiR 4

IMPROVING NUTRITION

Good nutrition is fundamental to human health, performance, and weit- being at every age and stage of life.. Not only is it a prerequisite for optimal growth and development, it is also essential for the promotion and maintenance of health, prevention and treatment of disease, and recovery

and rehabilitation from illness..

The roli of nutrition in extending the lifespan and improving the health of the American population in recent decadcs is increasingly well recognize& Scientific advances such as the discovery and elucidation of

the role of vitamins and minerals; public health efforts such as improved,

sanitation; technological developments such as pasteurization, food'''.

fortification and enrichment; expansions of income maintenance and food

assistance programs such as food stamps, school feeding programs and others; and improvements in agricrdusral production, marketing, and

distribution have all made a difference in the health of Americans.

Mothers and children have, of course, shared in these advances and benefited from our increased awareness of the need for adequate and

appropriate diet Nonetheless, much remains to be done to improve the nutritional status and health of- mothers and children, and indeed all individuals. In this regard, the Panel finds that at least four major considerations must be weighed. First, the Panel believes that the major role that nutrition plays in health has not been adequately recognized by the health community generally, including those whose principal focus is maternal and child health. Most recent reports on maternal and child health give scant attention to

nutrition, and many programs providing health services and health

education to mothers and children do not adequately cover nutrition

issues. We find this neglect exceedingly misguided_ In our view, nutrition

is a major, not marginal, component of efforts to promote health and

prevent disease in this population as in all age groups. Therefore, advocaees of improved maternal and child health should '_end carefully

to issues of nutrition along with their more usual focus . for example,

health services. , Second, it is the Panel's view that national policies to promote adequate nutrition should relate to all income strata and ethnic groups and not focus solely on selected groups, because nutrition problems are not restricted to low-income or other specific groups in the population. In the

publicly financed nutrition services and support have focused

141
- - primarily on those with demonstrated vulneiabilitiesthe poor, the ill,

and the handicapped. Such an approach may have been appropriate for a

health systein directed aairemediation_ However, it is wholly inadequate

for a health system that should focus more inte_.---tly on promotion of health

and prevention of disease. We muss not abandon our commitment to

individuals and- groups who are at risk of undernutrition because of

economic, social, or physiological disadvantage. But we can no longer

afford to ignore nutritional problems common to all families and children.

Third, it is apparent that strategies to improve nutritional status must be

designed to accommodate a new profile of nutrition-related problems that

differs significantly from that of two or three decades ago.' While there are

still some who lack adequate food and suffer from malnutrition, starvation

and gross nutritional deficiency diseases such as rickets and endemic

goiter are no longer the major problems they once were- Today's nutrition

problems are "more likely to be related to overconsumption and imbalances in the types and amounts offoods consumed, and to exposure to an

expanding variety offood additives and contaminants. The leading causes

of death and disability for adults today include cancer, heart disease, and

strobe --each of which may, to a greater or lesser extent, have roots in

dietar3( patterns. Fourth. the social and economic environment that influences both our

use of foods and the nature of food substances themselves hus changed

dramatically in recent decades. Changing lifestyles, new food choices,

technological and economic transformations in our food system, and

related developments have produced a new "nutrition environment"

which must be taken into account as we shape nutrition-related policies

and programs. Various sections of this chapter develop these four themes more fully

and outline a set of actions to improve the nutritional status of mothers

and children. Such strategies should be major components of national

health and nutrition policies focused on this important population.

THE SIGNIFICANCE OF NUTRITION FOR HEALTH

In the sections below, threes aspects of the relationship between

nutrition and health are noted: the role of nutrition in normal growth and

development; special nutrition issues in high-risk groups; and the

relationship of diet to selected diseases.

Normal Growth and Development

An appropriate, balanced diet is-important for health at all life stages,

and is essential for women in the childbearing years, pregnant women,

mothers who are breast feeding, infants, chiadren, and adolescents.

Maternity care begins long before pregnancy in measures aimed at

promoting the health and well-being of the young people who arc

potential parents. There is evidence that a woman's total life nutritional

experience can have a significant impact on her reproductive performance

142
and health. Women who enter pregnancy undernourished or who fail to

gain adequate weight during pregnancy are at greater risk of having lowbirth-weight babies. The rapid physiological changes of pregnancy along with other pressures often- makes it difficult to correct longstanding nutritional deficiencies during the relatively brief time span of pregnancy

itself. Health care programs including cannily planning services that care

for women before and between pr'nancies have a unique opportunity to

identify women with nutrition-41 or metabolic conditions that require

correction, and to provide nutritiG.-tal counseling to improve the nutrition- al status of women with poor dietary habits. The relatior'iship between maternal nutrition and pregnancy outcome has been the subject of numerous studies (I). Growth rates during

intrauterine life are the most rapid of any time in life and depend in large

part on maternally supplied nutrients. The rapid growth occurring during pregnancy requires an extra intake of caloriesas much as a 20-percent increaseas well as more protein, vitamins, and minerals. There is

considerable evidence (2 3) that the nutritional health of the woman and

her diet during pregnancy influence her weight gain, which has in turn

been demonstrated to have a relationship to infant birth weight. Low- birth-weight infants have higher mortality rates and are more likely to

suffer from physical and mental handicapping conditions. Nutrition -

related factors that increase tte risk of low birth weight and birth defects

include alcohol consumption, which may replace nutritious food in the

diet, and smoking, which may decrease appetite. Other factors such as

limited money for food, unusual diets, and lack of knowledge and skill in adjusting the quantity and quality of the diet to meet the needs of

pregnancy may have an impact on the nutritional status of the pregnant

woman and affect the outcome of pregnancy_ Adequate nutrition is particularly important for women who breast

feed. Lactation increases maternal need for calories, protein, and certain minerals and vitamins. Lactation in the absence of adequate nutritional

intake can be deleterious to maternal health, and when intake is severely

restricted, there may be a decrease in milk production which in turn

compromises infant nutrition. Although severe malnutrition is a leading cause of infant and child

mortality and morbidity in the world, such cases are now rare in the

United States. When they dc occur, they are apt to be related to disease

conditions such as chronic pafcction or malabsorption; to social pathology

such as child neglect or abuse; or to unusual dietary practices. Recent

surveys (4, 5) have indicated, however, that poor nutritional status, especially iron deficiency, does exist in some groups of the population,

usually those of lower socioeconomic status. Infants are among the most nutritional':; vulnerable of all age groups. Their accelerated growth and

developme nt and their greater nutrient requirements for size necessitate attention to their nutrition and feeding. Yet on she whole, infants as a

group appear to have fewer nutritional problems than do preschoolers and

other children.

Because feeding practices established i' infancy can have an impact on

long-term health. early detection and prevention of nutritional problems and initiation of sound feeding practices are important. Increasing

143

1
appreciation of the nutritional, immunological, and psychological advantages or breast feeding and heightened concern about overfeeding in

infancy have led to some recent changes in infant feeding practices. The

downward trend in breast feeding which had occurred since the 1950's

appears to have been reversed in the early 1970's. However, the practice of

breast feeding is not increasing. at the same rate in all populations. Nearly

twice as many babies born to white mothers are breast fed compared to

blacks, and breast-feeding rates are much lower among women with less

than 12 years of education. Despite the promotion of breast feeding by

such authoritative groups as the American Academy of Pediatrics, only 35

percent of all babies were breast fed in 1975 and such feeding ended by 3

months of age for the majority rather than extending for the longer period

recommended (6, 7). During the preschool period, the rate of children's growth has slowed

and their nutritional requirements for body size are less than during

infancy. Thus they usuaiiy want and eat relatively less food. Other

characteristics that affect the nutrition of preschool children are their

increasing desire for independence and control over their environment,

their immature self-feeding skills, and their periodic refusal to accept more

than a limited variety of foods. Stuois and surveys (4. 5) have indicated

that the major nutrition-related problems in this age group are iron

deficiency anemia, mild retardation in physical growth, obesity, and

dental caries. The 1971-73 Health and Nutrition Examination Survey I

(HANES I) data indicated that about 5 percent of white preschool

children and over 8 percent of black preschool children had low

hemoglobin levels: Iron intake was below recommended daily allowance

for about 95 percent of children 1-3 years of age, regardless of income.

While not representative of the entire population, over 12 percent of the

children seen in public clinics (generally low-income children) in 1976

showed some evidence of stunting of linear growth. Findings from other

surveys, however, indicate that underwe t and stunted growth are not

widespread among American children .s a whole. Indeed, obesity, or

habits that could later lead to obesity, are more urgent nutrition-related

problems for the preschool child. A complex problem involving many

genetic and environmental factors, obesity in childhood can create serious

long-term social problems and problems of adjustment and can have

serious consequences for long-term health status.

Dental caries is another 'nutrition-related problem which affects large

numbers of'young children. Some estimate that 40-50 percent of 3-4-yearold children have dental caries (8). Research confirms a

correlation between the amount and frequency of sweets consumed and

the preva fence of dental caries.

Some parents depend on day care providers to supply a large

proportion of the food consumed by infants and toddlers 5 days a week.

Some preschool children in day care or other group care settings receive

meals and snacks there that contribute 75-80 percent of their nutrient

intake, which suggests that careful attention should be given to the quality

of the food provided in such f.:1,c-ilities. There are many service programs

for preschool children and their families which offer opportunities for

early detection of nutrition problems, as well as prevention through

144
development of sound feeding practices. Every effort should be made to

capitalize on these. Nutritional needs of school-age children and adolescents are of concern because of their continuing growth. Trends in food consumption of the U.S. population show that children consume a substantial portion (38

percent) of their, calories from fat and eat more highly sweetened foods

than other age groups.' Although data on the percent of calories from

sugar in children's diets are not yet available, it is known that children and

teenagers consume the most commonly eaten sweetened foodssoft drinks, cookies, desserts, and candyboth more frequently and in larger quantities than adults (9). Nutritional needs in adolescence are greatly increased since the growth

spurt experienced by such young people is exceeded only by that of the developing fetus and infant in the first year of life. Differences in the duration, timing, and extent of growth at adolescence largely account for

the differences in nutritional need between males and females in this age group. Some of the nutritional problems noted above, such as obesity and

dental caries, continue-in this age group, while diseases affecting the adult population also begin to be seen in adolescence. For example, physical examinations of adolescents indicate that 5 percent have significant cardiovascular problems and that 8 percent of adolescent males and 4

percent of adolescent females have elevated blood pressure. Fifty-five percent of adolescents show some sign of tooth decay, and obesity is fairly

common. Anorexia nervosa is also an increasing problem with this age

group as is underweight, particularly for girls (10). Some of these problems are related to adolescents' concern with identity

formation, sexual maturation, and increasing independence, all of which

have implications for nutrition. Many adolescents are involved in sports, and some current practices such as weight reduction or gain to meet requirements for certain sports, unusual diets for "quick energy." and

crash diets for weight reduction may adversely affect the health and well- being of the growing adolescent.

Nutrition Issues in High-Risk Groups

There are some mothers and children who, by virtue of such factors as socioeconomic and minority status, age, and cultural background, are at special nutritional risk. These groups are vulnerable not only to the nutrition-related problems that beset the entire population, such as dental caries, obesity, and iron deficiency anemia, but also to a host of others

including low birth weight_ growth retardation, and handicapping condltions. Other particularly vulnerable groups are those with physical or mental handicaps, chronic conditions or disease states which predispose

them to both financial and nutritional stress. Social problems such as child neglect, drug and alcohoi abuse, especially in teenagers, have potentially

significant nutritional implications as well. Of great concern are young pregnant adolescents who are at particular risk because the stress of pregnancy is superimposed upon that of adolescence. There is a higher likelihood of pre-eclampsia, anemia.

145
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excessive or inadequate weight gain, and low birth weight in the pregnant adolescent. Adolescents are 30-50 percent more likely than older women

to have low-birth-weight babies, and a baby born to an adolescent is two

to three times more likely to die during the first year ( /). As noted earlier, nutritional requirements for size for adolescent growth are higher than

those of any other period of life except infancy, and pregnancy occurring during adolescence results in additional needs for calories and nutrients.

Yet the adolescent . period is frequently characterized by fad diets and

nutrition-related problems which are often related to an overemphasis on

slimness, to drug and alcohol abuse, limited money for basic necessities,

and other such social and economic problems. Another group of special concern is pregnant women with conditions

such as hypertension, diabetes mellitus, heart disease and renal disease.

These women arc at increased risk of having complications of pregnancy

and low-birth-weight babies. Many of these diseases have nutritional

implications and require expert dietary management and intervention_

More women who were treated during their own infancy and childhood

for inborn errors of metabolism, (e.g., phenylketonuria) are now bearing

children_ To prevent severe mental retardation in the infants of such

women, dietary intervention is often required (11). Many infants of low birth weight, with birth defects or other problems

also have special feeding or nutritional needs after birth. For example, infants with inborn errors of metabolism may require specific dietary

intervention shortly after birth to prevent serious complications, including mental retardation and death; similarly, infants with carbohydrate

intolerances require early dietary modification to grow and develop

normally. The estimated 6 percent of all newborns who are of low birth

weight also require special care. The nutritional goal for the latter group is

to support a rate of growth approximating that of the third trimester of

intrauterine life, without imposing stress on the developing metabolic or

excretory systems. Appropriate feeding of low-birth-weight infants is most

important since this is a crucial period of development when inadequacies,

excesses, or imbalances are most likely to lead to permanent problems. Recent success in keeping alive some children who formerly would have died of such conditions as the complications of preunaurity, severe

malformations of the gastrointestinal tract, diabetes, or cystic fibrosis has

also changed the face of the malnutrition seen today. It has increased the danger of malnutrition secondary to disease unless such children receive

the special nutritional support or therapy they need. Children with chronic illnesses and handicapping conditions frequently need therapeutic diets requiring very detailed and specific nutritional counseling and support_ Diseases of this type include some forms of

cancer, heart disease, juvenile diabetes and hypertension, renal disease,

malabsorption, and cerebral palsy. Children with motor problems involving the central nervous system are also at risk for nutritional problems. At

first, these children often have difficulty sucking and swallowing. As they

develop, they have difficulty in controlling the head, trunk, and extremities. Ove-weight may result from inactivity or limited movement, which often makes it more difficult for a handicapped child to use crutches,

braces, or artificial limbs_

147
Other groups at particular risk of dietary inadequacy are women and

children in minority groups. including migrants, native Americans,

Alaskan natives, and refugees. Low income is a major factor in such risk;

others include certain culturally determined food habits which may be

unsound. mobility and lack of adequate food storage and preparation

facilities, language barriers, and social instability. Such characteristics can

isolate these groups and decrease their ability to obtain nceded food,

health information, and services for themselves and their children. Such

problems are especially acute for refugees and other foreign born

individuals who face a difficult and prolonged adaptation to a new way of

life (12).

Diet and Disease

The nutrition-related issues discussed in the preceding section are

significant not only because of their general importance for growth and

development and their special significance for high-risk groups, but also

because some of the main health problems in America today have been

linked to certain dietary patterns. Dietary habits begun in childhood may

well increase the probability of developing certain chronic degenerative

diseases later in life.

Obesity

Obesity. an excess of body fat, results from eating more, food than the

body uses for its basic energy needs and/or from expending less energy

than supplied in the diet. Obesity is associated with an increased risk of

high blood pressure, gallbladder disease, and adult onset diabetes, all of

which are in turn associated with increased risks of heart disease and

stroke. L also creates social. psychological, and economic hardships for

many. Obesity is Ix idely prevalent in our society and its frequency appears to

be . _creasing. It is probable that a trend toward obesity can be established

early in life, and once established, childhood obesity tends to continue

into adulthood. becoming increasingly resistant to treatment. The obese

child, according to the Surgeon Zieneral, is three times more likely than

other children to become an obe-ie adult. In fact, one-third of all obese

adults were overweight as children. Obesity in adults remains extremely

difficult to treat successfully, with up to 95 percent of patients regaining

some or all of the weight they have lost. For all these reasons, primary

prevention is considered the most promising strategy of intervention.

American children 6-4 1 years old are exceedingly sedentary by world

standards and probably even in comparison to the norms for past decades

in this country. Obese children as a group are more sedentary than lean

children. and even when active exert themselves less than other children.

Few primary schools do much to remedy this situation.. Some schools lack

physical education entirely, while in others the bulk of time and attention

is devoted to making the 5t "fitter" rather than encouraging the unfit and

the obese to participate more in physical activity programs within and

148
outside. of school. The most effective strategies for achieving and maintaining desirable weight in children appear to be based on combined

changes in diet, activity patterns, and redirecting various social and

emotional "cues" away from overeating and inactivity (13, 14).

Dental Caries

By age 11, the average American child has three decayed permanent

teeth. By age 17, the average youth has eight to nine decayed, missing, or filled teeth. Untreated tooth 'decay leads to the loss of permanent teeth, which is disfiguring and can result in dietary and communication

problems, and social and emotional difficulties. In the past few decades it has been established that dental caries is a

food-related disease. In general, the cariogenicity of the diet is due to its simple carbohydrate content and to the adhesiveness or retentiveness of

these carbohydrate-containing foods. Epidemiological evidence indicates

that population groups consuming high amounts of sugar suffer high

levels of dental decay. However, the quantity of sugar is not the only

important factor in dental caries. Frequency of consumption and time of

ingestion are also critical factors in caries developthent. Foods high in

sugar also differ in their cariogenicity. Candies and other items that

contain very high concentrations of sugar account for only about 10

percent of all sucrose eaten in the United States and their damage to teeth

depends more on their acidity than on their sucrose content. Soft drinks or

starchy foods, on the other hand, account for almost three times as much

sugar consumption and their role in caries production may be equal to Or greater than that of high sugar candies. Snacking habits involving foods high in sugar are prevalent among children and adolescents, the age

groups that are also the most susceptible to tooth decay (13, 15).

High Blood Pressure

High blood pressure is one of the most important risk factors for heart

disease, stroke, and kidney failure. It is also one of the most common disorders of adults and possibly teenagers, affecting one of every six Americans. Rates of high blood pressure in our population increase with

age, particularly for women. Blacks are twice as likely as whites tc have high blood pressure, and it is more common in lower income and less

educated groups. Population and laboratory studies have implicated lifelong high levels of salt consumption as a contributing factor in the onset of high blood pressure in some susceptible populations. Groups that traditionally

consume high levels of salt, such as the Japanese, demonstrate extremely high incidence. Those who consume very low levels of salt show little

evidence of the disease and no increase in blood pressure with age. Other dietary factors implicated in high blood pressure are obesity and diets rich

in fats. Weight control and lower fat diets or diets with equal portions of polyunsaturated and saturated fat have been shown to lower blood

pressure in human subjects. Focusing specifically on these risks in

149
children, it is significant that the total diets of many children are

apparently excessive in saturated fat and salt (13).

Coronary Heart Digesuae

Heart disease is the leading cause of death among men cr:ci 40 years of

age. Although it is one-third as common in premenopausal women, after

menopause the incidence rises. While age-specific death rates from heart

attacks have declined sharply in the last two decades, this disease still

accounts for one-half of the mortality of American men. Nearly one-third

of heart attacks occur before the age of 65. No one factor has been directly shown to reduce the risk of heart

attacks, but control of all known risk actors, including moderation in the

levels of dietary fat, saturated fat, and cholesterol in the diet, are believed

by many to be effective. Other risk factors include smoking, high blood

pressure, diabetes mellitus, emotional stress, family history, and sedentary

lifestyles. Populations with high consumption of dietary fat and cholesterol tend to have high blood cholesterol levels. The risk of heart attacks is

greater among individuals in populations with high blood cholesterol

compared with those in societies where people eat diets lower in fat and

cholesterol and have lower blood levels of cholesterol.

There is consensus among medical experts that although the clinical

effects of atherosclerosis are not usually apparent until midlife, the

condition is often well advanced by the third decade of life, with early

signs evident in the first decade. About 8 to 25 percent of adolescents have

serum cholesterol levels above the desirable level. Therefore, it may be

that primary prevention should begin in early childhood (13, 15),

particularly for children whose parent(s) have had a heart attatk at an

early age (16, 17).

Cancer

Approximately one-fifth of all Americans die of cancer. The causes of

cancer are complex and far from clear, but current evidence suggests that

behavioral and environmental factors may play a primary role in its

development. Epidemiologic and experimental data suggest the consumption of high-fat diets and diets low in dietary fiber may be implicated in

development of some cancers, although more research is clearly needed On

this issue (13, 15).

Diabetes affects up to 5 percent of the American population and

appears to be increasing in prevalence. The disease is common in all

affluent countries and rare in developing countries. For non-insulindependent (i.e, adult onset) diabetics, who'comprise 90-95 percent of the

diabetic population, the disease is associated with obesity, and can be

controlled by weight reduction. Diabetics are known to be more

susceptible to heart attacks than nondiabetics and to have elevated levels

of serum lipids. I -- 150
Until recently, dietary advice to control adult onset diabetes has emphasized limitation of carbohydrate intake, particularly sugar. Now

that the susceptibility of diabetics to coronary heart disease is recognized, along with their tendency to have elevated levels of serum lipids, dietary management emphasizes limitation of fat intake rather than the limitation of complex carbohydrates (e.g., starch and fiber), within a diet that stresses attainment and maintenance of desirable body weight(13).

THE NUTRITION ENVIRONMENT

Given the significance of nutrition for sustaining healthy growth and

development in all groups including those in various high-risk situations, and our growing understanding of the relationship between diet and

disease, interest in promoting good nutrition-related habits in all individu- als is increasing. Determining how to do so, however, has become

especially complicated, and challenging due to a variety of social, economic, and technological changes that have transformed American

society since World War U, and reshaped the food choices and habits of children and families.

One measure of social change with significant implications for nutrition

is that the number of working women in the United States has doubled in

the last 40 years, and the number of working mothers has risen tenfold.. In 1979, U.S. Department of Labor figures showed that 45.4 percent of all women with children under 6 and 54.5 percent of women with children

under 18 were working. Both percentages are expected to increase

significantly in the next decade (18). Full schedules mean little time or

energy to plan, _shop for, and prepay, e family meals. The phenomenal growth in "convenience" and prepared foods reflects this, as does the huge growth in eating away from home, a roughly S67 billion business in 1979

(19). Between 1958 and 1978, sales in fast-food restaurants increased 305

percent; sales growth in other restaurants, although much smaller, was still a sizable 83 percent (20). One correlate of these changes has been a gradual shift in attitudes about eating. Surveys have shown a strong

interest in nutrition, but new concepts of what constitutes a "balanced meal" or a "balan=d diet" are emerging. A growing num.bet _find that food and meal patterns need to be more flexible to conform to faster paced and less structured lifestyles, and believe that a nutritious diet can

be achieved by eating less traditional menus at any time of the day, rather

than at three fixed meal periods. As women join the labor force, household duties, including those

related to food, are shared among family members. The role of the mother as "family food gatekeeper" has been circumscribed. It can no longer be

assumed that she knows. what the whole family eats, as children and adults alike now make more independent decisions about what, when, and where

to eat. More men and children shop and cook, and families eat fewer

meals together. Work and school cafeterias, day care centers, vending machines, and fast food outlets now provide many of the meals formerly

eaten at home.

151
One clear measure of changing eating patterns is the high prevalence of

eating away from home and snackingboth of which contribute significantly to total calories consumed daily. Studies of food consumption

patterns show that for children who consumed food away from home,

such food accounted for 35-40 percent of daily caloric intake. Approximately two-thirds of all children and teenagers report at least one snack in

a 24-hour period. Snacks contribute about one-fifth of daily calories, equal

to the caloric contribution of breakfast, but less than the recommendations for nutrients other than calories (9).

Various technological changes have also influenced American nutritional status significantly. People now stand at the end of a highly

sophisticated food chain that to a large extent controls the nature and flow

of food from farm to individual. Major changes in food technology have

given us the capacity to mass produce everything from bread and cheese

to frozen dinners and desserts, and to invent an enormous range of

innovative food products. Such developments have given impetus to the

growth of fast food and other restaurants, cafeterias, vending machines.

airplane and train meal service--all of which depend on the efficiency and

centralization of our food production sector and the sophistication of our

new food technology. Consumers become acquainted with these new food

products when eating out and, according to marketers, eventually demand

and use them in the home. In 1928, grocery stores offered an average of 867 items (21). The

average supermarket now contains approximately 13,000 items (22).

Agricultural and technological advances allow buyers to choose not only

from basic commoditiesvegetables, fruits, grains, meats, and dairy productsbut also from a broad range of processed foods. It has been

estimated that over half of the food Americans buy is now processed to

some degree (23). A growing percentage of items in the grocery store are

foods in which some of the naturally occurring nutrients may have been

lost in the manufacturing process. while fat, salt, sugar. artificial flavors,

colors, preservatives, stabilizers and texturizers may have been added.

As we move further away from the basic foodstuffs that have sustained

our species historically, we must depend more on our knowledge of

human biology and nutritie47. -to-tell us whether we are eating adequate and

safe diets. Unfortunately, our knowledge is too imprecise and our science

too young to provide this assurance; indeed, some have called our new

food system the greatest human experiment ever performed by man on

man. Government and private surveys' in recent years have documented

growing public concern and confusion about food safety and the

nutritional adequacy of the present food supply (24). Many fear the

effects from increased chemicals in processed foods and others are

uncertain about the nutritional. and other properties of processed foods.

The exceptional growth in the "health food" industry in recent years, now

an almost $2 billion industry. attests to the extent of such concerns (22).

A vast amount of nutrition-related information is now directed to the

publicsome of it accurate, much of it imprecise, if not wrong. The

messages that Americans receive about food. diet, and health are as

152
inconsistent as their sources are numerous. Traditionally, families depend- ed on long-term experience with foods, including sensory cues, appear- ance, smell, and taste to guide food choices and to teach nutritional values

to children. Now, people increasingly depend upon information provided by sources outside of the familyfriends, grocers, doctors, teachers, ingredient lists, nutrition labeling, manufacturers' statements on packages and in advertisements, and Government policies and pronouncements when making food decisions. By far the most pervasive messenger, and the most heavily used by the

food industry, is television. According to a National Science Foundation

report, every year children watch approximately 20,000 television commercials for food products (25), most of them devoted to snack foods, soft drinks, and breakfast cereals. The industry spent $2.5 billion in 1978 to

advertise its food products, 90 percent of which was allocated to

television. This sum was more than twice that spent for automobile and

gasoline advertisingthe second largest user. For some groups, particularly the poor and those in rural areas, television may be the predominant source of nutrition information. A recent issue of USDA's National Food

Review analyzed mass media food advertising by types of food, and found

that: Highly processed foods account for a large part of total media

advertising. About $280 million was spent on soft drinks alone, accounting for about 13.5 percent of media aavertising for the food

system in 1978. Perishables or relatively unprocessed foods take a

very small portion of advertising expenditures. The lowest advertising rate is for unprocessed meats, poultry, fresh eggs, dairy products, and fruits and vegetables. Combined advertising in the six media

(spot television, network television, network radio, magazines, supplements, and outdoor advertising) for these products in 1978 was about $140 million, or half what was spent on soft drinks (26). Complicating the issue of food choice further, inflation takes an

increasingly large bite out of family paychecks. A 1980 Yankelovich, Skelly and White, Inc. survey reported that families are struggling hard to

maintain their interest in and commitment to sound nutrition. But food

costs are forcing them to make many changes in their food shopping, preparation, and eating habitsand not always in the direction of

improved quality. The pressure of food cost inflation is felt by all sectors of society, but, in the words of the survey report, "especially by the parents of the Nation's children" (24). For the poor in particular, food

cost escalation raises the basic cost of living. Also, the gradual withdrawal of competitive supermarkets from the inner city means that the urban

poor have an increasingly limited access to quality food at affordable prices, and must depend on small corner grocery stores that stock only a

limited supply of food items (27). By many indications, people have a strong and continuing interest in

nutrition and want to feed themselves and their families well. But to do so

has become increasingly difficult given our new nutrition environment. A

very sophisticated and broad approach to enhancing dietary quality will

153
be required if families are to provide the best possible foods for their

children, and if children and adults are to develop and maintain health

promoting lifelong eating habits in today's fast changing soc.;ety.

STRATEGIES FOR IMPROVEMENT

Cognizant of the nutrition issues discussed in the preceding sections, the

Panel has focused on four approaches_ to improving the nutritional status

of mothers and children. These are to increase nutrition-related information and education, to strengthen the role of nutrition services in health

care programs both public and private, to expand and improve the various

public feeding programs, and to focus research on a set of specific

nutrition issues. We do not suggest that these are the only strategies

available. We have not, for example, addressed ourselves to such issues as

regulation of the food industry, standards of food quality and safety, and

other similar matters that must also be considered_ Those itemized below,

however, seem the most significant from the perspective of the health

community. In the aggregate, they may be regarded as major components

of a more comprehensive national nutrition policy focused on mothers

and elildren.

Information and Education

A primary strategy for improving the nutritional status of mothers and

children is information and education covering many topics and provided

through many sources. Simply put, if nutrition is to become a central

component of efforts to improve n.,..Iternal and child health, there must be

a commitment in all appropriate sectorsthe health system, schools, the

media, private industry and Governmentto educate the Nation more

adequately about health-promoting and risk-mil. diets. Every effort

should be made to help parents and children un-it-- ,.ad what constitutes

diets that avoid deficiencies, imbalances, excess . nutrients or energy,

and minimize dietary risk factors for disease.

Regardless of the source, the content of nutrition education pertinent to

mothers and children needs to be broadened to incorporate the newer

concepts of heal th-pr.)moting diets. The education must be consistent,

practical and useful,. and cifsufficient depth and breadth to serve as a basis

for sust*ining eating habits that promote health over the full life span. The

nutrition message should be based on a recognition of the role of nutrition

in lifelong health and of the individual's responsibility for promotion and

maintenance of his or her own health. It should be varied and tailored to

meet the specific needs of specific audiences, but the basic content must

be consistent and coordinated. No single message or nutritional guideline

will meet all of the public's needs. Instead, nutrition education must face

the complex task of presenting the best currently available information on

nutrition and health given different stages of scientific certainty, and of

presenting guidance oriented to the practical realities of culture, lifestyle

and available foods.

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With these general perspectives in mind, we urge that the Federal

Government take a leadership role in informing and educating the Nation

about a wide range of nutrition issues. Norms for appropriate nutrition

should be developed, routinely updated, and vigorously disseminated by

Fed civil .authorities for the benefit of all Americans, including children

and pregnant women in particular. An example of the Government

fulfilling just this function was the release in 1980 of "Nutrition and Your

Health: Dietary Guidelines for Americans," developed jointly by DHHS

and USDA (28). The Panel finds the guidelines to be prudent advice to

Americans about nutritionally sound diets and applicable to the needs of

children and pregnant women. Particularly in light of the information

presented earlier regarding the relationship of diet to selected health

problems and diseases, the Panel calls special attention to the recommendations to:

Maintain ideal weight Avoid too much sugar Avoid too much sodium (salt) Avoid to), much fat, saturated fat, and cholesterol

We also call attention to the strong advocacy in the guidelines of breast

feeding, unless there are contraindications; the value of delaying the

introduction of solids until an infant is 3-6 months old; the cautionary

messages directed at pregnant women regarding alcohol use; and the

general need of both pregnant and lactating women for high-quality diets

that contain extra calories and more of many nutrients. Many of these basic concepts are particularly important to convq-rdo.

school-age children. In chapter 3, the broad issue of health education is

discussed in depth. Here we would only add a recommendation that comprehensive school-based health education !programs include a major

emphasis on nutrition. We caution, however, that to do so will in many

instances require the development of more adequate nutrition education

curricula and materials. While some agencies and organizations have been

concerned with nutrition education, they often have generated teaching

materials or program guidance of only limited effectiveness. The emerging

consensus reflected in several- recent reports is that nutrition education

programs and materials need to be more comprehensive, carefully

designed, and in step with current nutrition information. New materials

should be based on current knowledge about nutrition, be carefully

designed for different developmental stages, include appropriate emphasis

on peer and parent roles in nutrition-related behavior, and, in general, be

designed with the new nutrition environment in mind. They should also be

developed in light of the sound and comprehensive set of guidelines for nutrition education contained in the 1979 National Conference on

Nutrition Education recommendations (29). We recommend that the

relevant offices of USDA, OHMS, and the Department of Educadon, the

States, and private foundations _collaborate on the development or

nutrition education curricula for school-age children and adolescents, and

that such efforts include adequate evaluation of model curricula.

School-based nutrition education is not sufficient, however. The Panel

is also deeply concerned that the media increase its efforts to promote

sound nutrition-related habits. In comparison with the billions spent each

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year on food advertising, little money is spent on nutrition education. This

imbalance is strikingly evident in children's television programing which

includes so many food-related advertisements that are widely regarded as

health-compromising. This issue is discussed more fully in chapter 3.

The Federal involvement in nutrition education programs is also

significant and a major means by which nutrition information and

education can be promoted. Currently, there are approximately 30

pro'grams in ,1 I Government agencies that. have an identifiable nutrition

education component; of these. 22 involve specific child nutrition

education activities. Despite a history of involvement in programs of

nutrition education, the Federal Government has not been notably

successful in this field. Message content and techniques for communicating nutrition information have been criticized in detail by the General

Accounting Office (30) and the 1979 National Conference on Nutrition

Education (29). The major problems identified include sluggish Federal

mechanisms for achieving a working consensus on nutrition guidelines,

inefficiencies in arriving at consensus on appropriate messages and special

emphases for target groups, and problems in defining and reaching target

groups. There are two federally funded programs specifically designed for

nutrition education. The Expanded Food and Nutrition Education

Program (EFNEP) and the Nutrition Education and Training ("NET)

program. EFNEP is a service of USDA directed at low-income families.

The program was inaugurated in 1968 to provide food and nutrition

education to homemakers with young children via trained indigenous

nutrition aides. These paraprofessionals, who are :supervised by county

Cooperative Extension Home Economists, develop a one-to-one relationship with disadvantaged homemakers enrolled in the program at the

county level. During the 1970's, EFNEP expanded rapidly to include all

50 States and Puerto Rico. reaching its maximum size by 1973. Currently

more than 300,000 homemakers are enrolled in the EFNEP, which

employs about 4,000 paraprofessional nutrition aides. The annual program budget, which for FY 79 was approximately $50 million, is

distributed to Cooperative St'Ate Extension Services according to a poverty

population formula. EFNEP has reached only a small proportion of the

total low-income population during the past decade. EFNEP families

comprise only 3 percent of the more than 6 million households in the

Food Stamp program. EFNEP has tried to rectify the low participation

rates of food stamp households by working closely over the past year with

Food Stamp programs; sixteen pilot projects were funded in 1979-80 to

ides -itify ways of increasing participation of food stamp households in the

EFNEP. In addition, the pilot projects are testing alternate ways of

delivering EFNEP services. Rather than relying exclusively on nutrition

education on a one-to-one or door-to-door basis, use of multi-media

approaches is being tested. NET was established in 1977 by P.L. 95-166, an amendment to the 1966

Child Nutrition Act. Its legislated purpose is "to encourage effective

dissemination of scientifically valid information to children participating

or eligible to participate in school lunch and related child nutrition

156
programs." NET funds are distributed through State education agencies

to local schools and districts for use in training teachers and school food

service personnel and to conduct nutrition education activities that fully

utilize both the school food service facilities and the classroom_ The NET

program is intended to help children learn t--) apply principles of good

nutriti "-i in their daily lives. Better understanding of good nutrition and

its relationship to health is expected to increase the accernance of

nutritious foods provided through school food service, with a c- acomitant

decrease in food waste. In FY 1980 the NET program reached 3.5 millrion

childrer and had a budget of $20 million. Evaluation studies are now

underway to determine the results and achievements of the program_

Without prejudging the relative merits of EFNEP or NET. especially

since various pilot studies and evaluations are underway to strengthen the

programs, the Panel nonetheless urges the leaders of both EFNEP and

NET to design these programs in a way that is consistent with the

principles of nutrit, related information and education outlined at the

beginning of this secti, 7. Before leaving the topic of information and education, the Panel wishes

to call special attention to the fact that all the strategies mentioned thus

farwhether in -chools, the media, or public and private health care

pro&-.1-.mscon, ntrate primarily on encouraging changes in the behavior

of individuals. This, in our view, is only a portion of the remedy. We call

equal attention to -Ale role of institutions in influencing the nutritionrelated practices ofindividuals, and the complex relationship of individual

behavior and social influences in this. regard. A particularly important

example of this interplay relates to the practice of breast feeding. As

previously noted, breast feeding is of great nutritional and inununological

significance to the developing infant, and is also believed to enhance

mother-infant attachment. The Panel concurs with the American Academy of Pediatrics (A.AP), that 'breast feeding should be strongly recommended for full-term infants, except in the few instances where specific

contraindications exist" (31). We also share the concern that breast

feeding is not as widely practiced as it might be. To increase the incidence

and duration of breast feeding, however, we caution that it is not enough

siiaply to increase the information and education about this issue. We

suggest that broader social influences and institutions affect the choices

women make about how to nourish their infants. To increase breast

feeding, employers, health care providers, the health care system generally. and other institutions should take steps to encourage breast feeding

and support mothers who choose to breast feed and are able to do so. For

example, of the several suggestions made by the AAP to increase breast

feding, many focus on institutional changes_ With regard to ways to

chainge aspects of the health care system specifically to support breast

feeding, they state: The routine in many hospital-5 makes breast feeding difficult:

therefore, efforts should be made to change obstetrical ward and

neonatal unit practices to increase the opportunity for successful

lactation. Changes may include the following: (1) Decrease the amount of sedation and/or anesthesia given to
the mother during labor and delivery because large amounts can impair suckling in the infant. (2) Avoid separation of the mother from her infant during the

first 24 hours.

(3) Breast-feed infants on an 'on demand' schedule rather than on

a rigid 3- to 4-hour schedule, and discourage routine supple- mentary formula feedings. (4) Reappraise physical facilities to provide easy access of the

mother to her -infant. Rooming-in of mother and infant is

important to successful lactation. (5) Attitudes and practices in ztnatal clinics and in maternity wards should encourage a curnate which favors breast-feeding. The staff should include nurses and other personnel who are not only favorably disposed toward breast-feeding but also

knowledgeable and skilled-in the art (31). We would add that employers should recognize the special needs of mothers with young infants and structure schedules and hours to facilitate

breast feeding; and that education about breast feeding should be presented in the public media, and included in the curricula of health

professionals and in school-based health education programs; and that

various backup services to support breast-feeding mothers should be

developed and built into the health care services available to women of

reproductive age. Another example of the importance of institutions in the area of

nutrition relates to the role of supermarkets, restaurants, and other

marketers of food in ensuring that an adequate sel..tion of nutritious

foods is available and in sharing the responsibility for educating and

informing the public about sound nutrition. Even the most "educated and

informed" consumer will have difficulty in maintaining, a health-enhancing diet if the foods readily available in the course !of daily life are of poor

. nutritional quality. We reCogniz' e that the forces that shape the nature am

availability of foods are complex and not amenable to simple analysis. Nonetheless, as a guiding principle, we urge that major manufacturers, distributors and marketers of food recognize the powerful role that their practices and policies play in shaping the nutrition -related preferences of

the American public and children in particular, and undertake steps to not

only ensure. that nutritious foods are widely available, but also to help in

educating the public about the importance and the components of a

nutritious diet. For example: a Vending machinesespecially in schoolsshould provide a vari- ety of nutritious foods, such as fresh fruit, milk, and fruit juices,

and not just the usual fare of candy, salty snacks, and soft drinks.

a Supermarkets should use various strategies such ''. CT S, pamphlets, and sample recipes and menusto

customers about sound nutrition principles. Restaurants and fast food chains should ensure that the foods they offer include an adequate number that are of high nutritional

quality.

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Nutrition in Health Care Services

A second means for improving the nutritional status of mothers and

children is to increase the extent to which nutrition services are integrated

into health care services. Such nutrition services include screening an I

assessment to determine nutritional status and to identify nutritional needs and problems; counseling to help individuals ac' list daily activity

and food consumption to mez"s health needs; nutrition c ;ucation to enab=e

parents, other child caretakers, and children themselves to make informed

decisions about food; referral to food programs and other types of

community assistance as needed to maintain an ades_ate diet; followup

services as appropriate to ensure that dietary recommendations are

implemented and reinforced. Many women and children will also need

help with problems such as home and money management and use of

various community support services and resources. Although the need for and value of such services as an integral part of

health care has been recognized by many providers and agencies in both

the public and private sectors, there are still far too Many mothers and

children who do not receive appropriate and necessary nutrition services.

The reasons for this neglect include, in our view, the fact that nutrition

services are financed only to a limited extent, if at all, by many public and

private health care financing systems; wide variations in the knowledge

and skills of health professionals' regarding nutrition; and the limited

availability of nutrition professionals in the health care sectors. Over time,

however, such barriers are surmountable, leading the Panel to recommend

as a general principle that the policies of both the public and private

health care sectors should ensure that nutrition services become an

integral part of health services for mothers and children, directed both at

health promotion and disease prevention, and at treatment and rehabilitation. Within this broad framework, the Panel calls specific attention to the

place of nutrition services in the setting in which so much of this Nation's

pediatric and maternity care is deliveredthe office of the private

practitioner working alone or in a group practice. As we discuss in chapter

6, it is essential for such practitioners to have strong links to various

services that cannot typically be provided in any single office setting but whose availability is essential if comprehensive care is to be offered.

Nutrition services are a prime example. We urge that health care providers

give specific consideration to their patients' nutrition-related needs as part

of the full range of health services offered, and that they organize their

practices so that they are closely linked to nutrition services and

professionals is thei. community in order to make appropriate referrals to

meet their patients' nutritional needs.

We realize, however, that even those health care providers who wish to

give increased attention to nutrilLon issues and to teach children and

families about healthful nutrition practices may have trouble doing so

because their own training did not include adequate attention << nutrition.

Historically, pediatricians have been taught to include informatwi, about

159

.
diet and nutrition as part of routine well-baby care during the first year or

so of life. However, after that, physicians usually do not counsel parents

and children about nutrition. Too often, if the child's height and weight

fall within normal limits on a growth curve, little is said about the

adequacy or the '=quality of diet_ Similarly, parents are infrequently

provided with sufficient guidance to help children who are obese or too

slender, or to manage the dietary problems associated with certain chronic

illnesses. To ease this problem, the Panel urges that medical school

training, residency training for pfimary care practitioners and training for

all other health professionals. particularly nurses, who intend to work in a

primary care setting include instruction in: basic principles of r -rition,

especially as such principles pertain to key developmental stages such as

pregnancy, lactation and infancy; food choice and eating habits of

children and their paren.-.; cultural variations in food choices; and

strategies to help both parents and children change and improve their

nutrition-related habits.

Similarly, and in recognition of the relatively untapped contribution

that other types of professionals may make in the health area, we

encourage training programs for social service personnel, teachers, day

care staff: and other appropriate professionals who come in frequent

contact with pregnant women. children, and families to include basic

training and continuing education in nutrition commensurate with their

role and responsibility for nutritional care.

Such steps should be accompanied by others addressed to selected

financing issues_ In the Panel's view, the lack of financial support for

nutrition services in private and public health care programs is a major

barrier to expanding the accessibility and quality of nutrition care

available to mothers and children. An especially unfortunate example of

such financing inadequacies is that the model of reimbursement of most

health care services, Title XVIII (Medicare) of he Social Security Act,

does not provide reimbursement for nutrition services such as nutrition

counseling as a home health service. Another example relates to the

special problems that arise when particular dietary products are required

for the treatment of certain chronically ill and handicapped children.

Because of the costs of some of these dietary products and the important

counseling associated with use of such products, families may require

financial assistanceyet many insurance plans still make no provision for

such products or services_ These reimbursement problems persist, despite the fact that the

Congress, numerous task forces. professic-r:al organi7,_ntions, and agencies

have recognized the need and value or prov iding nzItrition services as a

part of ambulatory health care services aiaci ack.nowhtdged their costeffectiveness in preventing and treating disease and disability (32-34).

Nonetheless. there still has not been any nationwide action on the part of

public and private health insurers to include nutrition as a reimbursable

service. In some instances, such lack of support reflects a simple

undervaluing of the benefits and importance of nutrition services, and a

consequent reluctance to finance such services. It is also the Panel's view,

however, that nutrition services are but one of a broader class of services

that third-party payers typically do not support primarily because the

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precise content of the service is not well defined, because there is lack of

clarity about the circumstances under which such services are best provided and paid for. including which mixes of personnel are best suited

to provide such services, and related concerns. In chapters 5 and 9, this

issue is taken up in detail and a recommendation made to increase the

health service research, evaluation, and studies needed to analyze

such issues for selected services, includin;_,- nutrition services, with the

expectation that such studies will significanriy increase the extent to which

these services are financed_ As a simultaneous process, however, and as a

general principle, the Panel urges that both public and private third-party payers reorient their financing policies to extent reasonable, given

existing information about how best to prov2ae and pay for nutrition

services, to reflect more adequately the importance of nutrition services in

maternal and child health care. We urge, for example, that private and public insurance coverage of special dietary products and services be

extended. The Panel is especially concerned that nutrition-related services be

adequately included in the major publicly financed maternal and child health programsTitle V and EPSDTand in selected additional programs with broader mandatesI-lead Start, and the primary care programs supported by the Department of Health and Human Services' (DHHS) Bureau of Community Health Services (BCHS): The discussion

of these programs, which follows, is presented within the context of a

broader Panel concern that as nutrition services are forced to compete for

scarce health dollars, they are often decreased, eliminated, or transferred

from one funding source to another_ In such an environment, they often

lose support and are almost never expanded or provided additional

funding.

Tide V

As a part of their broad health mandate, the maternal and child health

programs authorized by Title V of the Social Security Act established the

first concerted and continuous national effort for the development of nutrition services in State health agencies, and later defined the nutritional

care model for pregnant women, children and adolescents through the

Maternity . and Infant Care (MIC) and Children and Youth (C&Y)

projects. Nutrition services under Title V, 'carried out in partnership with State and local health agencies. include screening- and assessment of

nutritional status, nutrition counseling and education, referral to available

food programs and other types of assistance programs in the community, ad followup. Significant numbers of mothers and children receive

nutrition services through specialized health programs in adolescent

health, mental retardation, intensive newborn care and others. In 1978,

over 1.200 children with inborn errors of metabolism received care and

dietary treatment through 72 specialized centers supported in part by Title V (35). With regard to this latter service, the Panel finds such centers

especially valuable and urges that additional funds be provided via Tide V

and other appropriate programs to strengthen regional clinical centersthat provide clinical backup to consulting primary care physicians and

1 61
highly specialize: dietary products ro those patients for whOm they are

prescribed. Because Title V is .a formula grant program offering substantial

autonomy to the States, specific nutrition services are not mandated in the

legislation but are included in the regulations as one of several eligible

"medical services." in order to ensure that administrators allocating Title

V resources continue to assign appropriate priority to the support of

nutrition services, the Panel recommends that Title Vregul.....ious continue

to define nutrition services as one of several eligible medical services, and

thereby maintain the position of nutrition services in the broad array of

maternal and child health activities financed by this program. Similarly,

Federal Title V leaders should indicate clearly to the States that, given the

importance of nutrition for maternal and child health, nutrition services

should be sustained and strengthened despite current budgetary pressures.

The Panel also notes that the current National Public Health Reporting

System used for Title V does not inventory the number and location of

programs that have a nutrition component, the number of nutritionists

being supported with Title V funds, nor the number of mothers and

children who are receiving nutrition services. Rather, nutrition is combined under "other services" to simplify reporting. The result, however, is

to obscure both the nature and extent of Title V nutrition services. To

overcome this problem, we recommend that those responsible for

collecting data on Title V expenditures collect more specific information

- regarding the recipients and staffing of nutrition services, and to the

extent possible, the impact and cost-effectiveness of such services. We

add. however, that this recommendation for improved reporting of Title V

nutrition expenditures and activities is only a small part of a broader need

for improved data on the full Title V program generally, as discussed in

vol. II of the Panel's report.

EPSDT

EPSDT recently enlarged and improved its nutrition assessment

component to ensure that the nutritional status of eligible children is

assessed and that appropriate referral and treatment services are provided.

Specifically, the State program and penalty regulation issued in May 1979

requires that States ensure that the nutritional status of children

participating in the EPSDT program be assessed; and guidelines issued in

May 1980 recommended that nutritional assessment be a routine part of

the overall assessment of a child's health. This process is to include: basic

questions about dietary practices to identify unusual eating habits or diets

which are deficient or excessive in one or more nutrients; complete

physical examination including dental examination; accurate measurement of height and weight; and various laboratory tests to screen for iron

deficiency, lead toxicitX and, in some instances, serum cholesterol. If such

information does not suggest nutritional problems, then the child is not

referred for further nutritional asessment at that time, but is to receive

nutrition education to promote health and prevent nutritional disorders. If

there is suggestive evidence of dietary inadequacy or nutritional problems,

then further assessment is to be done, and the EPSDT program is to

162
arrange for preventive, treatment, and followup services including dietary

counseling and nutrition education based on the needs of the child and

family, through direct provision of services or appropriate referral_

The Panel supports the increased specificity regarding nutrition services

in these EPSDT guidelines_ To ensure that the States comply with such

directives and that EPSDT is closely linked to other community nutrition

resources, the Panel recommends that the Health Care .Finanng Adminitration monitor on a yearly basis the States' implementation of

the nutritional assessment guidelines for EPSDT programs. State Title

XIX agencies should reimburse treatment services including appropriate

laboratory procedures, counseling, and medications related to nutrition.

In addition, States should develop cooperative arrangements with the WIC and other fbod and nutrition programs in o. der to enable them to

easily refer children at nutritional risk to such programs.

He Start

Head Start provides 3-5 year old children from low-income families

with ,comprehen_clve education, social, health and nutrition services.

ProvisiOn is made for parent involvement in program planning and operation and for education of parents regarding child development, health and nutrition. In 1979, about 425,000 children and their families

were being served by 1,200 grantees operating over 10,000 centers. About

$70 million was spent on food, $53 million of which was reimbursed by the U.S. Department of Agriculture (USDA) Child Care Food program. About 12.8 percent of Head Start funds are spent on the program's nutrition component (36). Not only is the provision of meals and snacks

required in Head Start projects, but so also is nutrition assessment and

education for children and their parents. Nutrition services are designed

to complement other program components, i.e., health and education. As

noted in other sections of this report, the Panel strongly supports the Head Start program generally and would urge that it play a greater leadership

role in strengthening child nutrition.. Specifically, many low-income children participate in child day care programs that do not meet Head

Start standards, including those related to nutrition_ The Panel recommends that State and local authorities undertake efforts to extend the

head Start nutrition model through linkages with other community health

and social services programs and through use of existing Head Start programs as training sites to enhance the nutrition related skills ofstaff

from other -.1day care centers.

Primary CareCommunity Health Programs

BCHS supports the concept of nutrition services as an integral

component of all primary health care programs. In 1979, over 3.7 million

people were served in Community Health Centers. Estimates are that 80

percent of those served were children and women of childbearing age (37).

The legislation, regulations and funding criteria for Community Health

Centers (including migrant health centers, Appalachian Health Demonstration programs, Rural Health Initiative and Urbdn Health Initiative

163
projects) include nutritional assessment -ind referral as a preventive health

service and define -.upplemental health services to include nutrition

education. The same core of nutrition services included in administrative

guidance for Title V applies to these programs. However, development

and expansion of nutrition services in Corn unity Health Centers are

hampered by the same fiscal constraints noted under Title Ne-:dentifying

resources for support of nutrition services in these programs remains

problematic. The Panel supports recent efforts to inform all grantees about available

Federal and nonfederal resources to improve the nutritional status of

individuals in these programs and the requirement that all BCHS

ambulatory health care projects make necessary links to the WIC

;grogram_ We also find that more needs to be done to foster coordination

and cooperation between State and local public health nutrition services

and nutrition services in Community Health Centers.

Strengthening Public Food Programs

A third strategy for improving the nutritional status of mothers and

children is to strengthen existing public food programs which typically

focus on high-risk groups such as the poor. The major publicly financed

food programs in the U.S. provide direct intervention through food

subsidies or supplements. They include the Food Stamp program; the

Supplemental. Food Program for Women, Infants and Children (WIC),

which also includes an educational component; school feeding programs;

child care and summer feeding programs; and the special milk program.

Earlier in this chapter w,e asserted that widespread starvation and

malnutrition are no longer the problems they once were in the United

States. That view notwithstanding, it would be incorrect to conclude that

the problems of hunger and basic nutritional deficiencies have been either

totally or permanently solved. In fact, undernutrition still causes poor

growth and development and deficiency disorders among some poor and

minority women and children, especially those living in rural and

impoverished inner city areas without adequate access to health and

nutrition services_ As the ratio of poor children to affluent ones continues

to rise, and as income support declines in real value during a period of

inflation., unemployment, and fiscal austerity, gains made in recent years

could disappear. Along with' the very poor, several other groups merit

special attention and vigilance- migrant families, non-English speaking

families, refugees, Native Americans, and residents of American trust

territories. The threat of resurgent hunger among children of the poor is

serious enough to require extensive nutritional surveillance as a high

priority of national nutrition policy and despite the gains achieved in

recent years, further efforts are warranted to eliminate hunger altogether

and to reduce iron deficiency and other serious nutritional problems

among low-income and at-risk populations of children and pregnant

women. Adequate, nutritious food for all remains the greatest single policy

objective. In addition, the various food supplement programs must face

the newer challenge of responding to emerging nutritional concerns about

164
the role of diet in health promotion and the prevention of chronic

degenerative diseases. Although data indicate that Federal programs have been effective in

alleviating hunger and malnutrition. several issues must be addressed if

they are to be effective in preventing the dietary imbalances now

dominating nutrition concerns. Of primary importance are the extent of

participation, the level of benefits, and coordination across programs. Participation rates in most nutrition intervention programs have historically been low. For example, it is estimated that less than 25 percent of the

eligible population is participting in the WIC program and that the

Schoo. 1, Breakfast program is available to only 30-35 percent of school-age

children (36). To make these programs more effective, the key reasons for

nonparticipation need to be identified. Such inforz ation can be used by

policyrnakers as the basis for designing appropriate actions to increase

program participation. A second issue is the level of benefits in each

program necessary to promote good nutrition. This involves not only how

much food needs to be included in a meal or food package, for example,

but also the more difficult task of determining the type and quality of

nutrition education needed to effect behavioral cha.ige. In the sections below, suggestions are made for improving the major public food

programs.

Special Supplemental Food Program for Women, Infants, and Children

(WIC)

The WIC program provides supplemental, nutritious food to lowincome pregnant and lactating women and infants and children up to age

5 who, because of poor health, inadequate nutrition_ or both, are at

nutritional risk. Created by Congress in 1972 as a pilot program with an

annual budget of $20 million, WIC has grown to a program financed in 1980 at about $750 million annually and reaching approximately 1.8 million women, infants, and childi rna under 5. Although WIC has

expanded rapidly since its inception, cu,-rent participants are but a small

fraction of the 9.1 million people estimated to be eligible by income

criteria alone to participate in the program (38). Many of these eligibles

who are also nutritionally in need of WIC benefits cannot participate

because of inadequate funding. At present, there are approximately 50,000

known eligible persons on the waiting list who are in need of service but

live ir.. areas served by agencies that have already reached their quota. The WIC program is unique among Federal food programs in that,-

while administered at the Federal level by USDA, it is administered at the

State and the local levels as an adjunct to the health care delivery system.

Local agencies operating WIC programs are required to see that health

services are available to WIC participants. The linkage of WIC to prenatal

and child health care services is one of the best aspects of the program, but

has proven to be one of the most difficult to implement. Some local WIC

programs have expanded in size and scope so rapidly that they have

exceeded the capacity of existing maternal and child health services. In

addition, there remain areas in this country without adequate health

1(3
services; needy persons in these areas are categorically ineliglible for WIC

services because no local agency can guarantee the required availability of

health services. Consequently, one optictn for expanding WIC services is

to make maternal and child health services more widely available through

increased funding for these health services.

Because of WIC's limited funding, determining who is to be served is

very difficult. Typically, certifying physicians, nurses, nutritionists, or

other health care professionals must choose among several hundred

pregnant women on the ;waiting list, or must decide whether to drop

infants who were recently anemic to make room for new participants.

Another problem is that women often enter the program relatively late in

pregnancy and average length of participation is oily about four months.

Better outreach and coordination of the WIC programs with the health

care system, and better education, regarding the importance of a high

quality diet early in pregnancy could help to change this pattern of late

enrollment. Increased funding of the program would also help because

present limited resources require that !e women and children in

greatest need be served first, and preventive, efforts among women early in

pregnancy often are curtailed as a result.

A combination of factors makes the WIC program a very attractive

policy commitment to enlarge and build upon for the future. The program

works, is widely accepted, and is targeted to a needy group where

intervention can have a high payoff in both humanitarian and -costeffectiveness terms. Critical food assistance services in pregnancy, birth,

and early Lnfancy deserve high priority as a policy focus. The Panel

recommends that over the long run the WIC program be enlarged to serve

all women, infants and children who are eligible by income level and

nutritional risk. We also urge that maternal and child health programs be

expanded and given incentives to collaborate closely with WIC to improve

the outcome of high-risk pregnancies especially and ensuregood nutrition

and health in the earliest months and years of lzfe.

The Nation is in a period when major additional expenditure for social

programs is unlikely, and when the principal concern of policymakers is.

with improving the efficiency and effectiveness of programs so that limited

dollars can accomplish as much as possible. Stronger coordination of

effort between WIC and health care programs funded through Title V,

and Medicaid/EPSDT targeted on pregnant women and on the care of &

infants and toddlers at risk offers a high potential for reductions of infant

mortality and birth defects, Unproved health status, and long-term health

care cost savings. To help achieve such coordination, the Panel recommends that State and local health care systems which provide the base for

the WIC program should be strengthened by channeling additional

dollars through the maternal and child health programs supported

through Title V and through Medicaid/EPSDT to enable a strongjoint

effort combining nutrition and health services directed at pregnant

women, infants, and young children at risk of poor health and nutrition.

In the meantime, WIC should continue to act as a magnet to draw health

services. into amas where food supplements can be provided but no health

services presently exist. Examples of the innovative extension of health

166
0-10 10.1-20 20.1-30 30.1-40

Percent of eligibles served

40.1-100

Number of States serving specified percentages of financially eligible

children and women under the WIC program:- United States, 1980

Note: Wyoming and me District of Columbia did not participate in tne WIC program as of January 1980. . 1
services in response to WIC can be found in many rural areas_ These

efforts should be further encouraged and strengthened_

One major problem at present is that--the eligibility_standards of the

WIC program and many of the health care programs to which individuals

are referred are not uniform. A child, for example, may be eligible for

WIC services but not for an EPSDT assessment and followup services.

Such incongruities create serious problems for both the administrators

and users of public programs. In the long run, it is clear that the Nation

should and must move toward unifor.n, realistic eligibility standards for

all publicky supported food and health care programs_ First steps should

work toward uniform eligibility for pregnant women, infants, and very

young children at nutritional or health risk_

Food Stamp Program

For _many low-income households, the Food Stamp program is the

major means by which families with children are able to purchase

adequate diets. Studies have shown that food stamp users purchase more

nutritious foods per dollar spent on food than eligible but nonparticipating households and survey data indicate that participation in the program

is associated with significant improvements in dietary intake (39). Despite

these positive results, it is difficult- for most individuaLs to purchase an

adequate diet on food stamps alone, given the erosion of the dollar's

purchasing power due to inflation and the minimal level of benefits

provided in the Food Stamp program. Low-income women and children

usually r eed to participate in other nutrition programs in addition to food

stamps to meet more of their nutritional needs- Because this program

remains one of the major public programs that acts to promote maternal

and child health, the Panel recommends that the Food Stamp program be

expanded both in numbers of individual, served and in the benefit levels

for program recipients. The program's benefits should be based on a more

nutritionally adequate and rcia.a.-tic food plan than now in use. Current

efforts in Congress to reduce benefits through a more restrictive food plan

should be strongly opposed, and program expansion should be paralleled

by vigorous' efforts to ensure that abuses of the program are minimized.

School Lunch and School Breakfast Programs

The largest of the child feeding programs are those based-in the schools.

The National School Lunch program is currently available in 75 percent

of all schools and to apprnximately 90 percent of all school-age children.

The program 4ndirectly began in 1935 when commodities were first

donated to schc,ols. It officially became a .school lunch program in 1946

with the passalx of the National School Lunch Act of 1946. The School

Breakfast program is a much more recent addition to the set of child

nutrition programs. Bre--ikfasts were introduced in a 2-year pilot project in

1967, then made pern.a.nent in 1975 and extended to all schools that

applied. At present. the program is availablc to 30 percent of all school168
age chikiren, although only 3 million children participate daily in contrast

to the National School Lunch program, which provides lunches for

approximately 25 million children each school day. The Panel strongly supports these school feeding programs. We call

specific attention, however, to the relatively limited implementation of the School Breakfast program, which is aimed at providing food at precisely

the time of day when children need it most. Many children come to school

without breakfast or with an inadequate breakfast. In a 24-hour recall of

food intake, over 5 percent of children and 10-25 percent of all teenagers

reported having had no breakfast (9). Such information is especially

distressing given the current view that the most productive school learning

takes place during morning hours and that hunger during- this period can

seriously impede concentration and classroom participation by youngsters

(40). Despite the potential value of the School Breakfast program in

addressing thii issue, it is apparent that many children do not benefit from

it By 1979, almost all States had the breakfast program, but only 19 had breakfast programs available in at least one-fourth of their schools that

have the lunch programs. Despite Federal monetary incentives, net

program availability has increased by only 15,000 schools since the

program was made permanent in 1975 (36).

The reasons for this slow implementation involve numerous State and

local administrative problems and some local opposition..rAdministrative

issues pertain to problems in the simultaneous scheduling of breakfast and

busing, lack of storage and preparation facilities for two meals per day, and the financial stress of operating two meal programs. In some

communities there is disagreement over the level of school responsibility

in providing food to children and the extent to which family breakfasts

will decline if breakfasts are offered at school. Similarly, many school- auttiorities believe that morning feeding of children should be the role of

the -family, not the school. These are not problems inherent in the

program, but rather are issues of local priority and value orientation. Despite such concerns, the Panel finds a great need for the program and

therefore- recommends that the major school feeding programs receive continued support, and that State leaders especially encourage greater

local participation in the School Breakfast program. Schools in the lowincome areas should continue to receive priority for beginning new

programs. It is in these schools that the greatest need for supplements to

the food received at home is evident.

Since many schools that provid:: a .unch p,--)gram do not offer a breakfast program, different incentives may be necessary. Financial

incentives, such as providing reimbursement for some nonfood costs,

already exist and should be further emphasized. Consulting services could

also be provided to help systems modify school schedules to coordinate

them better with breakfast schedules. At the local level, infok-mation on

the benefits of a breakfast program and the number of children who

would benefit could be used to generate community I.:ippon. Because so

few schools now participate. expansion of the School Breakfast program

may be one of the most cast-effective means to increase the amount of

nutritious food available to school-age children.

169
Other Public Programs

Two other public programs with special relevance should be noted: the

Commodity Supplemental Food Program (CSFP) and Aid to Families

with Dependent Chi Idren (AFDC). CSFP distributes food directly rather than providing vouchers to be

redeemed in the grocery store, which is the emphasis of WIC. It tends to

be oriented to income eligibility rather than to eligibility based on

- nutritional risk. There have been no e'aluations of CSFP comparable to

those performed on WIC," although one is scheduled for FY 1981. There

are some major differences in the design of the twc programsnotably

the absence of a strong health care component in the commodity

programwhich may produce different effects. As a general matter, the

Panel urges that over time, the Commodity Supplemental Food Program

become more closely related- to the provision of preventive and primary

health care services.

With regard to AFDC, whose cash assistance payments now go to over

7 million of the Nation's children in 3.4 million families, the Panel is

aware thlat some critics have suggested that these payments in themselves

are enough to cover food costs for low-income children and their parents.

Dur findings are different. In 32 States, AFDC payments do not meet the

federally determined minimal standard of assistance. Food allowances in

49 States fall below the Federal minimum for a family of two, and in 53

States and territories they fall below the minimum level for a family of

four (41). At present, four-person families on AFDC receive an average of

only $1,620 per year for food_ In addition, high inflation is rapidly making

food more expensive and State legislatures are not inclined to increase

welfare benefits. These data suggest that in most States, public assistance

allowances are not sufficient to provide an adequate diet. There is an

urgent need to increase public awareness of the inadequacy of AFDC

allowances and to enlist public support and commitment to improve such

allowances so that vulnerable children have access to an adequate diet

and other basic essentials oflife.

Research

A fourth strategy we suggest focuses on the inadequate national

commitment to nutrition-related research. Although basic research on

nutritional requirements of children has expanded in the last years,

applied nutrition research has not Three major types of needed nutrition research that have come to the

Panel's attention are:

(1) Better definition and understanding of children's diet, nutrition

and health status. Currently, we have only fragmentary information regarding the dietary, nutritional and health status of

mothers and children. This is partly due to the absence of

adequate methodologies for collecting such information, but also

to a general inattention to these issues. Some standards and

criteria used to evaluate nutritional status are extrapolated from

170
those designed for adults and may be inappropriate for children.

Also we have only preliminary information regarding the impact

of into.-rvention programs on the nutritional and dietary status of

this population, due in part to inadequate evaluation methods

and inadequate funding for such studies. (2) Identification of individual and family behaviors that increase

children's risks of disease, ease, and development of effective strate-

- gies for-.helping families to change nutrition-related practices that

adversely affect children's health status. Diet and health behavior are learned in social settings. It should be possible to identify

families in which food practices and orientations are in need of

improvement. Imaginative strategies must be designed to help

families gain the knowledge and motivation to alter their

practices. Further, we need a greater understanding of the

dynamics of eating pattern development in childhood, including

research on the relationship of various family structures and

styles on the food choices of children_ Until we understand how

behaviors develop and what influences them, our nutrition

education efforts with children are little better than scattershots.

The effects of advertisements, especially those on TV, on dietary habits are particularly important to assess. Finally, we must

begin to examine systematically trends in dietary intake in order

to understand the possible policies and programs which can

offset adverse trends and enhance positive ones. (3) Greater understanding and documentation of the effects of early

- feeding patterns and nutritional status on long term development and -dult health status. Although the significance of good

nutrition to lifelong health is increas:1-....71y appreciated, more data

are :needed regarding the effects of spe cific nutrient intakes (e.g., cholesterol, salt) on later health. For example, we require more

information on the existence of "critical pc!-iods" in development with nutritional significance, and the length of time certain

substances can be ingested beyond which particularly ads effects cannot be reversed. Prospective, longitudinal studies to

develop such a data base are likely to be prohibitively expensive. However, innovative, creative analysis of cross- sectional and

already available limited longitudinal data (e.g., persons evalu- ated in both HANES I and I! studies) may provide some of the

desired data and suggest appropriate designs for future studies.

REFERENCES AND NOTES

(1) National Acadeitly of Sciences. Maternal Nutrition and the Course of Pregnancy. Washington. D.

C.: National Academy of Sciences. 1970. (2) Naeye. R. L. -Weight Giun and the Outcome of Pregnancy?' American Journal of Obstetrics and

Gynecology 135: 3-9. 1979. (3) U.S. Department of Health, Education, and Welfare. National institute of Neurological Disease

and Stroke. Wome..7 and Their Pregnancies_ Washington. D.C.: U.S. Government Printing Offic e..

DHEW Pub. No. (TsiIH) 73-379.

(4) National Center for Health. Statistics. Anti roprometric and Clinical Findings of the First Health

171
(5)

(6)

(7)

(8)

(9)

(10)

(1I)

(12)

(13)

(14)

(15)

(16)

(17)

(18)

(19)

(20)

(21)

(26)

(27)

(28)

(29)

(30)

172

and Nutrition Examination Survey

Office, 1914. Owen. G. M. -A Study of 1%. -

(Supplement): 1968-70. American Academy of Pediatric:.

Academy of Pediatrics, 1979. National Center for Health Statistics. Trends in

23, No. 3. DHEW Pub. No. (PHS) 79-1979.

72. Washington. D.C.: US. Government Printing

s of Preschoolers in the U.S."' Pediatrics 53

.Jutrition Handbook. Evanston. American

Breast Feeding Among American Mothers. Series

Pediatric Clinics of North America. Nutrition in Pediatrics. Philadelphia: W. B. Saunders

Company. February 1977.

U.S. Department ofAgriculture. Science and Eduz,ition Administration. Food and Nutrient Intake

of Individuals in One Day in the U.S 1977-78 Nationwide Food Consumption Survey. USDA.

Preliminary Report No. 2. Spring 1977. September 1980.

Nat-oast Academy of Sciences. Adolescent Behavior and Health. Washington, D. C.: Nationkl

Academy of Sciences. October 1978.

Komrower. G.. M. -*Maruig-znaent of Maternal Phenylketonuria: An Emerging Clinical Problem. -

British Medical Journal: May 26. 1979.

Foman S. J. -Practices of Low-Income Families in Feeding Infants and Small Children with

Particular Attention to Cultural Subgroups.- Washington. D.C.: US. Government Printing Office.

Stock No. 1730-0200, 1972.

U.S. Department of Health, Education. and Welfare, Public Health Service. Health, United States.

1979. Washington. D.C.: U.S. Government Printing Office, DHEW Pub. No. (PHS) 80-1232. 1980.

U.S. Department of Health. Education, and Welfare. Obesity in America.. George A. Bray. ed.

Fogarty International Center. NIH Pub. No. 79-359. Ncvember 1979.

US. Department of Health. Education, and Welfare. Public Health Service. Healthy People. The

Surgeon General's Report on Health Promotion and Disease Prevention. Washington, D. C.: U.S.

Government Printing Office. 1979.

Hennekens C. H.. M. J. Jesse, B. Klein. J. Gourley. and S. Blumenthal. **Cholesterol Among

Children of Men With Myocardial Infarction:- Pediatrics 58: 211-217. 1976.

Glueck. C. T.. K. Kelly. M. J. Menial, P. S. Garside, and P. M. Steiner. "-Hypercholesterolemis and

Hyper Alpha Lipoproteinetniarin School Age Children:- Pediatrics 62(4): 478-487. 1978.

tatter. M. ***Demographic Perspectives for the 19110%.- Speech to the National Conference on

Nutritional Education. Washington. D.C., September 27-28, 1979.

Gallo. A. E.. -Food Spending and Income.- In National Food Review. p. 3. Economics. Statistics.

and Cooperatives Servi US. Department of Agriculture, Winter 1980.

Van Dress, M. G. -1- ass Food Industry Growth:- In National Food Review. p. 35. Winter 1980.

Molitor, G. T. "The Food System in the 80-s." It's **Proceedings of the National Nutrition Education

Conference.- I. T. Dvryer. ed. Journal of Nutrition Education 12 (Supplement 1): July 1980.

M- skew% Institute. The Food Marketing IndustrySpeaks: 1980, 1980.

L. G. and D. D. Odland. Convenient. Food and Home-Prepared Foods: Comparative

.... ...tr. Yield and Quality. p. 3. U.S. Department of Agriculture. Economics. Statistics, and

Cooperative Service. Agricultural Economic Report No. 429.

Nutrition vs. Inflation: The Battle of the 80"s. p. 20. New York: Yatikelovich. Skelly ant:

1980.

Natoual Science Foundation. Research on the Effects of Television Advertising in Child.-en. p. Z.

A Review of the Literature it.r.d Recommendation for Future Research. 1977.

Gallo. A., J. Connor. and W. Boehm. -Mass Media Food Advertising:- In National Food Review,

p. 10. US. Department of Agriculture. Economics. Statistics, and Cooperatives Service. Winter

1920.

Community Services Advisory Committee. Inter-Agency Coordinating Committee. Corninuni*y

Services Division. Municipal Planning Office. -Exottus of Food Chain Stores Report:- Government

of the District of Columbia. March 1975.

U.S. Department of Agriculture and US. Department ofHealth. Education, andWelfare. Nutrition

and Your Health: Dietary Guidelines for Americans. Washington. D.C.: U.S. Government Printing

flute. February 1980. Dir.oyer. J. T.. ed. -Proceedings of the National Nutrition E...ltacation Conference:* Journal of

Nutrition Education 12 (Supplement 1): July 1980.

Comptroller General of the .United States, US. General Accounting Office. Informing the Public

Abo if Nutrition: 7-"edera.! Agencies Should Do Better:-Washington. D.C.: U.S. Government

Printing Office. March 1978.
(3l) Nutrition Committee of the Canadian Paediatric Society and the Committee on Nutrition of the

American Academy of Pediatrics. -Breast-Feeding.- A Commentary in Celebration of the

International Year of the Child. 1979. Pediatrics62: 591-601. October 1978.

(32) US. Senate, Select Committee on Nutrition and Human Needs. Hearings on the National

Nutritional Polity Study. Washington. D.C.. 1974.

(33) US. Senate. Select Committee on Nutrition and Human Needs. Hearings on Nutrition and Health.

Washington. D.C.. December 1975. (34) American Dietetic Association. Costs and Benefits of Nutritional Care. Phase 1. 1979.

(35) Hutchins, V. US. Department of Health and Human Services, Washington, D.C. Personal

communication. 1980.

( 36) Pop&in. B.. I. Akin. M. Kaufman. and M. MacDonald. -Nutritional Program] Options for Maternal

and Child Health." In Better Health for Our Children: A National Strategy. Vol. IV. Washington.

D.C.: U.S. Government Printing Office, 1981. (37) U.S. Ceps:Munn of Herlth and Human Services. Bureau of Community Health Services.

Unpibliabed data. 19.50. (.38) Comptroller Genersi of the United States. U.S. General Accounting Office. The Special

apple:mental Farad Program for Women. Infants. and Children (WIC) How Can It Work Better?

Washington, D.C.: U.S. Government Printing Office. CED-79-55. February 1979.

(39) U.S. Department of Health, Education. and Welfare. Social Security Admirtistrition. -Public

Assistance Statistics. July 1979. Advance Copy." Washington. D.C.: U.S. Government Printing

Office, December 1979.

(40) Dwyer. J. T. "Nutrition Education and Information." In Better Health for Our Children: A

National Strategy. Vol. IV. Washington, D.C.: U.S. Government Printing Office. 1981.

(41) Chief, E. "Need Determination in ArDC Programs." Social Security Bulletin 42: 11-21. September

1979.

C

a 173
SECTION HI

THE CONTENT ,

ORGANIZATION AND

FINANCING OF HEALTH

SERVICES
CHAPTER 5

NEEDED SERVICES,

In creating this Pan. el, the Congress asked for recommendations

regarding "- the appropriate type and quantity of preventive health care

and other health services needed by children in general and by particular

types of children at risk." We 'discovered early in our work that one overriding question would have to be answered before we could fulfill this mandate or address. other issues and problems about which Congress sought advice:- What personal health services should be available to mothers and children? The Panel firmly believed that its work should be based on an

understanding of the health care mothers and children actually need, rather than on such factors as apparent demand for services. It became clear that until we could define e range of services that should be

available, 4t would be difficult to -,etermine how best to organize and

finance health services for mothers and children, to assess provider arrangements, review personnel requirements, or to examine any other major aspect of maternal and child health care_ Furthermore, we felt a clear definition of needed services would be' useful to groups such as businesses and unions who must decide what type of coverage to seek tn group insurance plans, to third-party payers who must determine what services to cover in their policies, and to child health advocates seeking to

assess the adequacy of services currently available to their constituencies

and tc press for needed improvements. For all these reasons, the task of defining needed services became a fundamental first step in the Panel's work and served as the cornerstone for much that follows in subsequent chapters.

UNDERLYING ASSUMPTIONS

In developing actual lists of needed services, the Panel was guided by

several underlying assumptions. First, we took a broad view in defining

the types of procedures, care, and actions that should comprise health

services for mothers and children_ As described En chapter 1, the health

problems pertinent to mothers and children range from the biomedical to

the psychosocial, not only in their causation, but also in their treatment

177
and prevention. It is .the Panel's view, therefore, that the health services

needed by this population will necessarily entail not only traditional

medical care, but also a range of services such as counseling, anticipatory

guidance, and various information and education activities that are

oriented to psychosocial issues. Furthercnc,re, if an individual cannot

physically get to a source of needed care, or cannot communicate with a

health professional once there, the health service is available in theory

only. Thus, the services that should be available include selected

transi rtation, outreach, translator and related services. In recognition,

however, that such activities are not personal health services in the strict

sense, they are referred to In this report as "access-related services."

Second, the Panel directed its attention primarily to services that are

preventive in nature and are pically delivered through primary care

systems_ We have itemized the elements of preventive care in greater detail

tnan the elements of therapeutic and rehabilitative services, although all

three are obviously components of needed care and appear in the lists of

services. This orientation stems from the Panel's ndate, which emphasizes disease prevention and health promotion in :hers and children as

distinguished from treatment needs, and from the kanel's belief that many

of the strategies most likely to decrease overall mortality and morbidity in

this group lie in the domain ofpreventive services and primary care.

The Panel fully appreciates the vital importance of secondary, tertiary

and rehabilitative services. This Nation is a world leader in the medical

services that can be mustered to help a child seriously ill with an infectious

disease, suffering from severe burns, or injured badly in an automobile

accident, to cite but a few examples. Our ability to care for an ill newborn V.

is virtually unmatched, and our technological interventions to help the

physically handicapped constantly increase in sophistication. Clearly,

secondary, tertiary, and rehabilitative care are essential components of

health services, and nowhere is this more true than for children with

handicapping conditions and chronic illness. Systems for meeting such

special needs are discussed elsewhere in this report, particularly in chapter

8.

A third issue considered by the Panel in defining needed services was

that of efficacy. The Panel would like to list as "needed" only those

services whose efficacy has been thoroughly elocumented experimentally

and validated through experience, but the practice of medicine and the

content of health care generally is often .eas much art as science. Many

heal .41 care interventions, both preventive Ind therapeutic, have achieved

their place in the armamentarium of health services primarily by

thoughtful prftctice and consensus. In our view, the absence of complete

efficacy data should not preclude efforts to define the health services that

should be available to mothers and children. Reasoned judgment,

prudence, and experience. supplemented by available data where possible

are viewed by the Panel as adequate and legitimate guides in the task_

Public policy can seldom wait for perfect information before proceeding;

sometimes decisions must be-based on expert opinion and informed

judgments. In the long run, research conducted through the efforts of a

178
number of groups currently at work or proposed by the Panel can increase

the extent to which health services are science based.

Another issue confronted by the Panel was the question of the cost- effectiveness of the various services on our lists. In general, the Panel did

not seek to determine the cost-effectiveness of particular services, because we believe that cost-benefit and cost-effectiveness analyses seldom

provide policymakers wiih definitive answers about the value and proper role of a given service. Decisions can be informed and assisted by the findings of such analyses, but they often rest ultimately an value

judgments (1). Assessing the cost-benefit of counseling to parents of chronically ill children, for example, will always hinge to some degree on

the value assigned to providing amfort and solaL.e. The one exception to

tnis general avoidance by the Panel of cost-effectiveness analysis follows

in the discussion of a set of three ril4nirium basic services. The Panel is keenly aware that a variety of factors such as provider arrangements, reimbursement policies, and eligibility criteria will be.," decisive in determining the quality and accessibility of the services we have designated as needed, and whether they are truly available to and

used appropriately by mothers and children. For example, if an insurance policy excludes a needed service in its benefit package, t_-,c chances are decreased that the service will be widely used, even if it is important, as is

the case with dental services; if a hospital discharges new mothers and

infants without explicitly assuring that they are linked to a source of pediatric care, some will join the group of unnerved "hard to reach" people. In the Panel's view, the recognition of the influence of such system

variables should undergird any discussion of needed services. Accordingly, much of this report is directed to issues in the organization and

financing of health services, and the governance structures that influence

the health care system.

LISTS OF NEEDED SERVICES

Included in this section are lists of needed services developed by the Panel and shaped by the views just described. The lists draw heavily on

standards issued by various professional societies and similar lists that expert groups have developed in recent years. Principal sources included: Standards of practice issued by the American Academy of Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG) (2-4) The list of needed services contained in the Report by the Task Force on Pediatric Education, The Future of Pediatric Education

(5) The American Public Health Association's publications, Ambulatory Maternal Health Care and Family Planning Services, and Proposed Benefits To Be Covered on a Firs . Dollar Basis Under National Health Insurance-(6, 7)

I -P

179
The Institute of Medicine's background paper, Preventive Services

for the Well Population (8) Both volumes of the Surgeon General's report, Healthy People (9)

The Canadian Medical Journal Association's report, The Periodic

Health Examination (10)

The Breslow-Somers proposed "Lifetime Health Monitoring

Program" ( / ) Dollars and Doctors Are Not Enough, published by the Children's

Defense Fund (12) The background papers prepared for the Panel by Aronson,

Klernian, and Kessel et al. (13) (see appendix C)

Lists of services mandated by Medicaid; including the Early and

Periodic Screening, Diagnosis, and Treatment (EPSDT) program

(14) The health service benefits proposed by the Child Health

Assurance Program (CHAP) legislation

The benefits provided by several private healL'a insurance plans

By combining and building on the perspectives of these various groups,

the Panel believes that a strong first step has been taken in defining the

health services that should be available to mothers and children. We

emphasize, however, that these lists are only a beginning. Because of the

continuing flow of new scientific evidence, the changing nature of health

problems over time, and valid differences of professional judgment

concerning interpretation of existing data, these lists should be subject to

periodic reexamination and modii.ication appropriate groups that we

propose at the end of this chap. -..r, such as the Board on Health Services

Standards

In reading the lists, several important caveats and explanatory notes

should be kept in mind: First, the lists often descibe a set of services

preceded by the phrases such as," "as needed," or "as appropriate."

These phrases are designed to convey the notion that services -must be

tailore...-. to an individual and take into account age, stage of development,

past history, present risk, and so forth. The lists are not a practice manual,

but rather a compendium of 'rzoad categories of services that should be

available and used to varying degrees and in varying combinations by an

individual_ Second, the lists also use the phrase ". to include." This

phrase is intended to suggest that the units that follow are minimum

components of a broad category, --ether than examples or possible items

for inclusion. For example, the topir:s to be covered in prenatal

counselingwhich in the list are preceded by the phrase "to include"

are viewed by the Panel as essentially a minimum set.' Third, the lists

intentionally avoid notations of periodicitysuch as the desired frequency

of health examinations or specific immunization schedules. In general, the

Panel believes that the practice standards developed by such groups as the

AAP and ACOG are most adequate at present for those services for which

they have recommended specific schedules. Fourth, 'the age and developmcntal boundaries of the lists were somewhat arbitrarily determined.

Although they correspond to the boundaries of many other lists of services

reviewed, werecognize the inherent artificiality of such compartmentalization.
Health Services for Women of Reproductil-.- Age, With a Special Focus on Services Relevant to Reproduction

I. Services for nonpre rant women that relate to the occurrence and

course of future pregnancy A. Diagnosis and treatment* or referral and followup of general health problems, both acute and chronic, that can adversely affect future pregnancy, fetal development, and maternal health such as: 1. Sexually transmitted diseases 2. Immune status (such as rubella) 3. Gynecological anatomic and functional disorders 4. Organic medical problems such as renal and heart diseases, hypertension, diabetes, and endocrine problems 5. Inadequate nutritional status, including both under- and

overweight 6. Problems relating to Pert v

7. Genetic risk (see I D) 8. Significant dental problems s ach as pet k)dontal disease 9. Occupational exposures B. Diagnosis and treatmentb or refs. :al and followup of mental health and behavioral problems, both acute and chronic, that czn

adversely affect pregnancy, fetal development, and maternal health such as:

I. Alcohol abuse, drug addiction or abuse, other s.,:ostance

abuse, and cigarette smoking 2. Significant mental disorders such as schizophrenia and

depression C. Comprehensive family planning services, including: 1. Information, educatiort, and counseling regarding family

planning concepts and techniques, and other issues such as

the importance of prenatal care, and risks to mother and child

of childbearing at extremes of the reproductive age span 2. Physical examination, including breast and pelvic examination, as indicated, and tests such as a Papanicolau smear, G.C. culture. urinalysis, and serological examination as appropriate

'Services for both acute and chronic medical conditions include inpatient and outpatient services, clinic and physician office services, emergency services, laboratory and X-ray services. provision of prescribed

drugs and vaccines, medical supplies, and rehabilitation services.

bServices for be acute and chronic mental health conditions include inpatient and outpatient hospital services. long-term psychiatric care, clinic and Physician office services, counseling and anticipatory

guidance. crisis intervention services. laboratory services, and provision of prescribed drugs_

cllutriticr. services include screening-assessment of nutritional status; dietary counseling to assist people

to meet their normal and therapeutic nutritional needs: nutrition education; and provision of. or referral to. resources needed to improve or maintain nutritional health. that is. supplemental food assistance.

special feeding equipment. and food service programs

dHosne health services include the provision of medical, nursing. dietary, and rehabilitative services u.

the home: homemaker services including assistance for the family in routine household responsibilities

when illness or disability interferes with such functions..

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3. Provision of family planning methods and instruction regarding their use 4. 7-regnancy testing with attendant counseling and referrals as

appropriate (including prenatal services, adoption, and abortion) 5. infertility 'services, 'including counseling, information, education, and treatment

6. Sterilization services, including counseling, information, eaucation, and treatment

D. Genetic screening and related services as needed to detect persons

at risk, with counseling and referral as appropriate

E. Hoine health and homemaker servicesd

Services in the prenatal period

A. Early diagnosis of pregnancy

B. Counseling regarding plans for pregnancy continuation

1. For those electing to carry to term, referral for and provision

of prenatal care and of adoption services if indicated: referral

to childbirth preparation classes as desired

2. For those electing abortion, referral to and provision of first

. or second trimester abortion, including family planning

counseling C. Prenatal care services including: 1. History (general m -!ical, social and occupational. family and

genetic background, health habits, previous pregmincies, and

current pregnancy) 2. General physical examination including blood pressure,

height 'and weight, and fetal development

3 Laboratory tests as appropriate, such as VDRL, Papanicolau

smear, G. C. culture, hemogl-?bin-hematocrit, urinalysis for

sugar and protein, Rh determination and irregular antibody

screening, blood group determination, and rubella test

4. Diagnosis and treatment* or referral and followup of general

health problems, 'ooth acute and chronic, preexisting or

arising during the prenatal period, that can adversely affect

pregnancy, fetal development, or maternal health

5. Diagnosis and treatmentb or referral and followup of mental

health problems, both acute and chronic, preexisting or

arising during the- prenatal period, that can adversely affect

pregnancy, fetal development, or maternal health

6. -Nutritional assessment and services' as needed. Provision of

vitamin, iron, and othersupplements as appropriate

7. Dental services with special attention to. detection and

treatment ofperiodontal disease

8. Screening, diagnosis- (including amniocentesis), and counseling with followup for selected fetal genetic defects (such as

neural tube defects, Down's syndrome, Tay-Sa-ch's disease

and sickle cell disease) with abortion services available

9. Services to identify and manage high-risk pregnancies to

182
include provision of appropriate prenatal and perinatal care

services for labor, delivery, and newborn care 10. Counseling and anticipatory guidance with followup and

referrals as needed regarding: a. Physical activity and exercise

b. Nutrition during pregnancy, including the importance of

adequate but not excessive weight gain

c. Avoidance during pregnancy of smoking, alcohol, and other drugs; and of environmental hazards including

radiation, hazardous chemicals, and various workplace

hazards

d. Signs of abnormal pregnancy and Of the onset of labor

C. Preparation of the woman (and her partner where appro- priate) for labor and delivery, including plans for place of

delivery and feelings about use of anesthesia

f. Use of medications during pregnancy g. Infant nutritional needs and feeding practices, including

breast-feeding h. Child care arrangements

1. Parenting skills, including meeting the physical, ern3tional, and intellectual needs of the infant, with specific appraisal

to detect parents at risk of chile abuse or neglect

j. Planning for continuous and comprehensive pediatric care

following delivery, including arrangements for a pediatric

antenatal visit to link the family to pediatric care

k. Emotthnal and social changes occasioned by the birth of a child, including changes in marital and family relation- ships, the special needs of the mother in the postpartum

period, and preparing the home for the arrival of the

newborn

1. Other relevant topics in response to patient concern

D. Home health and homemaker servicesd

III. Services in the perinatal and postpartum periods

A. Assessing the progress of labor and the condition of the mother

and fetus throughout labor B. Medical services during labor and delivery for diagnosis

and management of conditions threatening the mother and /or

infant, including the availability of a Caesarean section when

indicated C. Delivery of the baby by a qualified professional in a facility that

has stlirices needed to manage medical emergencies of the mother

a r.d/or newborn, or has ready access to such services D. Diagnosis and treatment= or referral and follawup of general health problems. both -acute and chronic, preexisting or arising

during the perinatal and postpartum periods that can adversely

affect the mother's child-caring abilities

a Diagnosis and trcatmentb or referral and followup of mental

health or behavioral problems, both acute and chronic, preexisting

183
or arisingeduring the perinatal and postpartum periods-(including maternal depression) that can adversely affect the mother's childcaring abilities F. Counseling and anticipatory guidance with referrals and followup

as needed regarding: I. Infant development and behavior 2. Infant nutritional needs and feeding practices, including

breast-feeding. 3. Automobile restraints for infants and children, and general accident prevention concepts (especially home accidents and

accidental poisoning) 4. Infant stimulation and parenting skills, with specific appraisal

to identify parents at risk of child abuse or neglect 5. Need for ant. importance of immunizations 6. Effect on children of parental 'smoking, use of alcohol and

other drugs, and other health-damaging behaviors

7. The importance of a source of continuous and comprehensive care for both mother and child, including identification of available resources to help With such problems as illness in the

newborn or breast-feeding difficulties 8. Recognition and management of illness in the newborn

9. Hygiene and first aid

10. Child care arrangements

I I. Other relevant topics in response to parental concern

G. Home health and homemaker services

Routine postpartum examination, with referrals and followup as

needed, isiclading: 1. Laboratory services as appropriate 2. Family plazining services 3. Counseling as appropriate regarding the topics noted in III F

above and other relevant topics in response to parental

concern

IV. Health education regarding such topics as: A. Items in,II(C)10 arLJ III F above

a. \Developing positive health habits C. Using health serv;ces appropriately D. Using community health resources such as the Supplemental Food Program for Women, Infants and Children (WIC), food

stamps, welfare and social services that bear significantly on

health status

V. Access - related servicesA. Transportation services as appropriate including

I. Emergency medical transport services for both mother and

newborn

2- Transportation services associated with a regionalized perina-

.tal and/or tertiary care network . 3. Transportation services that facilitate obtaimn- g needed health

services

184 1
B. Outreach services

C. Hotline, translator, and 24-hour emergency telephone services

D. Child care services tc facilitate obtaining needed health services

Health Services for Infants in the First Year of Life

1. Services in the neonatal period A. Evaluation of the newborn infant immediately after delivery and

institution of appropriate support procedures such as nasal-oral

suctioning B. Complete physi=a1 examination, including length, weight, and

head circumference C. Laboratory tests to screen for genetically-determired diseases

including PKU, hypothyroidism, and galactosemia D. Diagnosis and treatment* or referral and followup of general

health problems, both acute and chronic E. Preventive procedures to include 1. Gonococcal eye infection prophylaxis 2. Administration of vitamin K

F. Services of a newborn intensive care unit as appropriate G. Nutritional assessment and servicesc and supplementation as

needed

H. Bonding and attachment support activities including provision for extended contact be- t a parents and their infant immediately

after delivery and,: vino =-re desired by the parents, rooming-in

arrangements or the equivalent

I. Arrangements for continuous, comprehensive pediatric care for

the newborn following discharge from the hospital

J. Home health service-sd

11. Services during balance of first year of life

A. Periodic health assessment to include:

1. History and systems review (general medical and social, fancily and genetic background, with items of inquiry determined by age, developmental stage, and likelihood of potential problems) 2. Complete physical examination to include:

a. Height and weight b. Head circumference

c. Developmental-behavioral assessment d. Vision and hearing evaluation 3. Screening and laboratory tests as indicated, including hemoglobin-hematocrit and tuberculin skin test; and, for infants at

risk, such procedures as lead poisoning, parasite, and sickle

cell screening 4. Nutritional assessment and services` and supplementation as need;:d (including provision of such supplements as iron and

vitamin D., and fluoride if community water supply is not

fluoridated)

18;
B. Immunizations according to nationally recognized standards

C. Diagnosis and treatmenta or referral and followup of general

health problems, both acute and chrk, rile

D. Home h;..alth services's

III. Services for families during infants' first year of life jj A. Counseling and anticipatory guidance with referrals and foliowup

as needed regarding: 1. Infant development and behavior 2. Maternal nutritional needs, especially if breast-feeding, and

infant nutritional needs and feeding practices 3. Automobile restraints for infants, and general accident prevention concepts (especially home accidents and accidental poisoning) 4. Infant stimulation and parenting skills, 4ith specific appraisal

to identify parents at risk of child abuse or neglect 5. Need for and importance of immunizations 6. Effect on children of parental smoking, use of alcohol and

other drugs, and other health-damaging behaviors 7. The importance of a source of continuous and comprehensive care for mother and child, including idiFtification of available

resources to help with such problem9 as sudden illness or breast-feeding difficulties 8. Recognition and management of illness 9. Hygiene and first aid

10. Child care arrangements 11. Otheir relevant topics in response to parental concern B. Counseling and provision of appropriate treatmentab and/or

referral to appropriate services (including home health and

homemaker servicesd ) as needed for parents: I. Who have chronic illnesses, handicapping conditions, alcohol

or drug problems, mental health problems (including mater- nal depression), or other health problems that seriously affect

their capacity to care for the infant 2_. Whose infant is seriously ill 3. Whose infant has a chronic illness or handicapping condition

4. Whose infant is or is about to be hospitalized

W. Health education regarding such topics as: A_ Items in III A above 8. Developing positive health habits C. Using health services appropriately D. Using community health resources such as WIC, food stamps,

welfare and social services that bear significantly on health status

V. Access-related services

A.. Transportation services as appropriate including: I. Emergency medical transport services for both infant and

mother

2_ Transportation services associated with a regionalized perinatal and/or tertiary care network

186
3. Transportation services that facilitate obtaining needed health

services

B. Outreach services

C. Hotline, translator, and 24-hour emergency telephone services

D. Child care services to facilitate obtaining needed health services

Health Sonices for Children (From 1 Year to Early Adolescence)

This list combines services for children from age 1 to early adolescence.

Obviously, some .)f the items apply primarily to either older or younger

children (such as Counseling regrrdi--! use by the child of cigarettes in the

former case and initiation of the mumps, measles, and rubella immunization series in tilt: latter).

I. Services for children

A. Periodic health assessment to include:

1. History and systems review (general rrtttclical and social,

family and genetic background, with items of inquiry determined by age, developmental stage, and likelihood of potential problems) . 2. Psychosocial history, including peer and family relationships,

and school progress and problems 3. Complete physical examination to include:

a. Height and weight, including attention to overweight, underweight, and poor linear growth

b. Developmentz. r. and behavioral assessment

c. Vision, hearing, and speech evaluation 4. Screening and laboratory tests as indicated, including hemo- globin-hernatocrit and tuberculin skin test; and. for children

at risk, such procedures as lead poisoning, parasite, and

sexually transmitted disease screening 5. Nutritional assessment and servicesc and supplementation as

needed (including provision of such supplements as iron and

vitamin D, and fluoride if community water supply is not

fluoridated) B. Immu_Aizations according to nationally recognized standards C. Diagnosis and treatment' or referral and followup of general

health prc-bble-_---A s, both acute and chronic

D. Diagnosis - treatmgmtb or referral and folloWup of mental

health problems, both acute and chronic, including emotional and

learning disorders, behavioral disorders, alcohol and drug-related

problems, and problems with family anci peer group relationships

E. Counseling and provision of support services as needed to

children with chronic illnesses and/or handicapping conditions

F. Dental services, both preventive and therapeutic, including oral

examination, prophylaxis, X-ray, fluoride supplementation if

community water supply is not fluoridated, restorations including

fillings, orthodontia for significant physical or psychological

187
impairnient, and treatment of dental problems including periodontal disease

G. Home health servicesd

IL Services for children and their families

A. Counseling and anticipatory guidance with referrals and followup

as needid to child and/or parents as appropriate regarding: 1. Nutritional needs including food purchase and preparation, routine dietary needs, and the importance of a high-quality

diet 2. Automobile restraints for children and general accident prevention concepts (ally home accidents, accidental poisoning, and sports injuries) 3. Parenting skills, with .specific appraisal to identify parents at

risk of child abuse or neglect 4. Need for and importance of immunizations 5. Medical and child care arrangements for child 6. Dangers of use by children and effects on children of parental

smoking, use of alcohol, and other drugs 7. Physical activity and exercise 8. Hygiene and first aid 9. Dental health

10. Childhood antecedents of adult illness

11. Child development (including sexual maturation and adjustment, and developmental and behavioral difficulties)

12. Environmental hazards 13. Other relevant topics in response to child and/or parental

concern B. Counseling and provision of appropriate treatment services'-b

and/or referral to services (including home health; and homemaker servicesd) as needed for parents: 1. Who have chronic illnesses, handicapping conditions, alcohol

or drug problems, mental health conditions (including mater- nal depression), or other health problems that seriously affect

their capacity to ca:e for the child

2. Whose child is seriously ill 3. Whose child has a chronic illness or handicapping condition,

or a significant behavioral or emotional problem

4. Whose child is or is about to be hospitalized

III. Health education regarding such topics as: A. Items previously mentioned listed in II A

B. Developing positive health habits C. Using health services appropriately D. Using community health resources such as WIC, food stamps, welfare and social services that bear significa:itly on health status

IV. Access-related services

188

A. Transportation services as appropriate including:

1 Emergency medical transport services

A 4 4
2. Transportation services associated with a regionalized tertiary

care network

3. Transportation services that facilitate obtaining needed health

services

B. Outreach services

C. Hotline, translator, and 24-hour emergency telephone services D. Child care services to facilitate obtaining needed health services

Health Services for Adolescents

I. Services for adolescents

A. Periodic health assessment to include:

1_ Medical history and systems review (generul medical and

social, family and genetic backgroun:... .A.:th items of inquiry determined by age, developmental stage, and likelihood of potential problems) 2_ Psychosocial history, including school progress and problems, out-of-school activities, peer and family relationships, and

health- related habits, including sexual activity and use of alcohol and drugs 3. Complete physical examination including: a_ Height and weight, with special attention to deviations

from normal growth curves b. Developmental and behavioral assessment, including sexu- al development c. Vision, hearing, and speech evaluatm.m,

4_ Screening and laboratory tests as indicated, including hemo- globin-honatocrit and tuberculin skin test; and, for adoles- cents at risk, such procedures as lead poisoning, parasite, and

sexually transmitted disease screening

5_ Nutritional assessment and services c and supplementation as

- needed

B. Maintenance of immunizations according to nationally recognized

standards

C. Family planning services with availability of extensive counseling

for the adolescent, partner, and family as appropriate; and

education on, among other topics, the importance of early

prenatal care and risks to both mother and child of childbearing in

early adolescence D. Diagnosis and treatment* or referral and followup of general health problems, both acute a id chronic E. Diagnosis and treatm.entb or referral and followup of mental health problems, both acute and chronic, including emotional and

learning disorders, behavioral disorders, alcohol and drug-related problems, and problems with family and peer group relationships F. Counseling and provision of support services as needed to

children with chronic illnesses and/or handicapping conditions G. Dental services, both preventive and therapeutic, including oral

189
exainination, prophylaxis, X-ray, fluoride supplementation if

community water supply is not fluoridated, restorations including

fillings, orthodontia for significark physical or psychological impairment, and treatment of dental problems including periodontal disease

H. Home health servicesd

H. Services for adolescents and their families

A. Counseling and anticipatory guidance with followup and refer- J. s as needed for the adolescent and/or parents as appropna te

1. Nutritional needs, including the importance of a high-quality

diet and the risks associated with fad diets

2. Automobile restraints and general accident prevention concepts, including sports injuries 3. Psychosomatic complaints such as those associated with

family and school difficulties 4. Dental health

5. Smoking, use of alcohol and other drugs 6. Physical activity, exercise, and sleep 7. Relationship of health-related behaviors in adolescence to

adult illness

8. Sexual development and adjustment, male-female relationships, and family life 9. Future plans,,including school and vocational plans 10. Other topics in response to adolescent and/or family concern B. Counseing and provision of appropriate treatment services alb

and/or referral to services (including home health and homemaker servicesd) as needed for parents: 1. Who have chronic illnesses, handicapping conditions, alcohol

or drug problems, mental health conditions, or other health problems that seriously affect their capacity to care for the

adolescent

2. Whose adolescent is seriously ill 3. Whose adolescent has a chronic illness or handicapping

condition, or a significant behavioral or emotional problem

4_ Whose adol.escent is or is about to be hospitalized

HI. Services with special relevance for pregnant adolescents Choosing to

carry a pregnancy to term and keep the baby, and for very young

parents A_ Special attention to prenatal services directed at detecting and

preventing low-birth-weight infants B. Indepth counseling regarding

1. Family and partner-spouse relationships 2_ Home management and family life with an emphasis on

preparation for parenthood 3. Vocational and educational plans

190
4. Management of stress associated with caring for babies and

young children 5. Financial planning C. Special educational arrangements as needed to assist the pregnant adolescent and young mother- to remaix. in school and/or obtain

needed job skills D. Support services such as infant and child day case, home health

and homemaker ser ices,d crisis intervention, psychological sup- port services, and services to link the young mother and family to

community resources as needed (such as WIC and welfare

programs, housing assistance, community mental health centers, vocational counseling and educational agencies, and food stamps)

!V. Health education regarding such topics as: A. Items in II A above

B. Developing positive health habits C. Using health services appropriately D: Using community health resources such as WIC, food stamps, welfare and social services that bear significantly on health status

V. Access-related services

A. Transportation services as appropriate including: I. Emergency medical transport services 2. Transportation services associated with a regionalized tertiary

care network

Transportati6n services that facilitate Obtaining needed health

services

B. Outreach services

C. Hotline, translator, and 24-hour emergency telephone services D. Child care to facilitate obtaining needed health services

MAJOR CONCLUSIONS

In developing the needed services lists, the Panel reviewed data

regarding the incidence and prevalence of the health problems of infants,

children, adolescents, and women of reproductive age; the relative

benefits of the interventions available to prevent and treat such problems;

the availability and utilizatiori. of health services by this population; and,

as noted above, similar lists developed by other groups- Such analysis and

the process of compiling the lists themselves led us to three major conclusions_ First, three broad classes of primary care servicesprenatal care, delivery, and postnatal services; comprehensive health care for children through age 5; and family planning services--should become

universally available without delay. Second, four additional groups of

services arc a.iso especially important and are not now adequately

available: mental health and related psychosocial services; dental ser191
vices; genetic services; 'and access-related services. Third, Congress should

establish a Board on Health Services Standards to serve a variety of

functions aimed at improving the content, quality, and availability of

health services for mothers and children.

Minimum Basic Services

A finding of preeminent importance is the Panel's conclusion that there

are three broad classes of servicesfor which there is such a clear consensus

regarding their effectiveness and their importance to good health, that it

should no longer be considered acceptable that an individual is denied

access to them fo.- any reason, because of financial barriers; barriers

resulting from the time place or manner in which the cervices arc

provided; inadequate personnel capacity; or other reasons. 1 nese services

are:

(1) prenatal, delivery, and postnatal care

(2) comprehensive health care for children from birth through age 5

(3) family planning services

The Panel has concluded that it is unconscionable for a society such as

ours to have any of its members need these services yet not-obtain them,

particularly because the components of these services are well understood

and essentially noncontroversial, their lifelong beneficial impact on health

status is indisputable, 'and they are of virtually equal value and -necessity

to all segments of the population irrespective of income, geographic

location, or other variables.

The Panel also sees a need for the cor tent of and standards of quality

for each of these service clusters to be clearly defmcd. At a minimum, such

definition will be needed to implement many of the specifiC suggestions

contained in later chapters, particularly our suggestion that the Federal

Government. and the States develop new and clear. assumptions of

responsibility for assuring the availability of these services. The Panel

therefore recommends that, as a first priority, the Public Health Service

(P115) promulgate standards for the content, periodicity, and quality of

these three basic clusters of services, for use by the Federal Government,

the States, private and public third-party payers, voluntary groups, public

programs, private practitioners and all others involved in delivering or

monitoring the delivery of these services. In so doing, the Public Health

Service should rely on the appropriate professional societies, the existing

health expertise within PHS itself (particularly the Office of Maternal and

Child Health and the Maternal and Child Health Administration should it

be formed as proposed by the Panel in chapter I I), the National Center

for Health Care Technology, the Institute ofMedicire-National Academy

of Sciences, consumer and advocacy groups, :tad other bodies as

appropriate. We recognize that the content of each of the three clusters is quite

variable in actual practice today, and that in only a few settings does each

service include all components itemized in our lists. For example, prenatal

care services frequently do not include information, education, and

counseling on many of the items enumerated in the lists, despite the

192
probability that careful guidance to pregnant women about avoiding such

harmful substances as tobacco and alcohol may be one of the most healthpromoting components_of prenatal care. In the short run, the Panel finds acceptable an approach in which the current, conventional norms

governing the content of each of the three services be considered adequate

for the purpose of pfornulgating standards as recommended above. As a

long range goal, the Panel urges that all effortssuch as reimbursement

policies, curricula for training personnel who will be involved in providing maternal and child health care, and standards of quality as developed by both public and professional groups be directed to improving and

expanding the content of each of the three sets of services in the more

comprehensive direction embodied in the lists. In chapters 6 through 9, a series of recommendations are made for

helping to ensure that all individuals have access to these services. These

recommendations are based on the Panel's finding that the principal barriers to obtaining the services lie in the way our health system is

structured. In some instances, assuring the availability of these services will require removal of financial barriers to obtaining care and new ways of organizing the delivery of care with an orientation to outreach and

access-related services, suck as revitalized home visiting. In others, what

may be needed is a more vigorous commitment to improving and

expanding existing systemsas in family planning. which is currently

delivered through a pluralistic system adequate for those it reaches but

which needs to tie expanded to accommodate those still in need.. It is also

apparent that a major nationwide campaign to help inform and educate

individuals on the importance of these services and how to obtain them

will be criticaL In chapter 3, the influence of the media in conveying such

information is noted, and some broad principles of health-related

behavior are described. These themes are directly applicable to reaching

the goal of assured availability for these three services. Personal actions

and choices will always_remain a major variable in, for example, whether

or not a woman seeks and obtains prenatal care elrly in pregnancy, even

in the best of circumstances. Thura major campaign to explain the nature

and benefits of these services and to motivate individuals to use them will

be essential

In the sections that follow, these three services are discussed in terms of

their effectiveness is promumizz child health and well-being, and the

unmet need for such services. We reiterate our view that for any individual to be in need of these services yet not able to -obtain Them should be

considered unacceptable, and feiterate that reaching unserved groups will

_probably require system changes directed-primarily at increasing access to

such services. Selected cost-effectiveness information is also included,

although the Panel did not use dollar savings a.1 the screen through which

it selected thesethree clusters of services for priority attention. It happens

that these services are iiighly'cost-effective. More important in the Panel's

view, however, is their indisputable contribution to health promotion and

disease prevention, the value attached to them by individual providers and

consumers, and the distressing fact that these services are not fully

available to all individuals who need them.

193
Prenatal, Delivery, and Postnatal Care

The Panel finds services associated with pregnancy, childbirth, and the

immediate postpiirturn period to be essential, but not yet available and

accessible to all who need them.

The effectiveness of prenatal care in reducing low birth weight the

most important predictor of illness or death in early infancy and of the

need for neonatal intensive carehas been so well demonstrated in

various well-controlled studies that even the most skeptical reviewers of

the health services literature would agree that this form of preventive care

is one of our most valuable irt promoting child health. Given no prenatal

care, an expectant mother is three times as likely to have a low-birth=

weight child. Three-quarters of the risks associated with low birth weight

can be evaluated in a first prenatal visit, and interventions can be taken to

help reCuce such risks. 1 urthermorc, late care or no care is associated with

increased prematurity rates, increased stillbirths, ar .:!. increased newborn

mortality. in 1977, neonatal, post-neonatal, and infant death rates were

four times higher for patients with no prenatal- care than those receiving at

least sorrie care. Infants born to women experiencing complications of

pregnancy such as toxemia and infections of the uterus have a four to five

times higher mortality rate than others. For mothers with such medical

conditions as diabetes. hypertension, or kidney and heart disease, there is

a higher risk of bearing babies who will not survive their first year. Such

risks can be reduced by competent,.early medical care (15).

Additional data supporting the value of prenatal cz -e were recently

cited in the Surgeon General's report, Healthy People:

From 1950 to 1977, infant mortality dropped from 30 to 14 deaths

per 1,000 live births. Although some of the improvement was due to

greater availability of regionalized intensive care units for newborns,

better prenatal services have clearly played an important role.

Maternity and Infant Care (MIC) Projects (which provide

4renatal services as a high priority) have consistently been associated with declines in low- birth- weiglff incidence and infant

mortality. In Birmingham, Alabama, for example, after the MIC project

began in 1967, prenatal clinics available for low-income pregnant

women increased and the proportion, of women receiving prenatal

care during the first trimester rose from 24 percent in 1968 to 39

perceni. in 1978. Although a direct cause-and-effect relationship

cannot be determined, infant mortality in this area dropped from 25

deaths per 1,000 live births in 1965 to about 14 in 1977and infant

deaths during the fir-- t month of life went from 19 to 10 per 1,000 live

births, a 47 percent decrease (15).

Interestingly, the precise components of prenatal care that lead to such

dramatic differences in reproductive outcome have not been clearly

identified. The lower risk undoubtedly is associated with some aspects of

medical and olxtetrical services, especially for high-risk conditions. It is

also highly likely that the counseling of expectant mothers on potential

prcblems for the fetus that my be caused by smoking, alcohol ase, and

194
poor nutritionand referral when necessary to suitable servicesis a

major contributor to the effectiveness of prenatal care. Despite the value of prenatal visits, fully one-quarter of all pregnant women receive late, little, or no caret/ This percentage is significantly

higher for certain groups, including the very young, women- over 40, black

women, the poor, the unmarried, the poorly educated, and those in rural populations. As we noted in chapter 1, these are the groups most likely to

be at high risk of a poor pregnancy., outcome even without th,burden of

inadequate prenatal care. Data froth 44 States suggest that 25 percent of

the women who gave birth in 1977 had no prenatal care in the first

trimester. Moreover, in New York City during the same year, 22 percent of all pregnant women had no prenatal care at all or none until the last

trimester. In central Harlem this figure was 30 percent ( 16). Furthermore,

about 70 percen of expectant mothers under age 15 receive no care during

the first mon of pregnancy, the period most important to fetal

development; percent of their babies are premature, a rate three times

., that for older mothers-0SY. Thus, despite the essential natu.-e of prenatal care, it is apparent that many of the Nation's most vulnerable women do

not receive such care early enough or, in some instances, at all. Prenatal care is often associated with helping to assure the physical health of an infant. Such care is also related to the prevention of certain

conditions that may later lead to mental disability and to the early detection and treatment of other mental health problems. Thus, the President's Commission on Mental Health lists comprehensive prenatal (and early infant) care first among its recommendations to implement a

strategy of prevention, especially for high-risk groups such as very young

mothers and those with important medical,problems such as diabetes ( / 7). The health services associated with childbirth and the immediate

postpartum period are also included in this set of essential services. The

Panel urges that we recognize there are some womenoften living in rural

areas or inner cities, and typically poorwho are still not Adequately

linked to the he lth system at the time of pregnancy and _childbirth. At

pr...ent, about 98 percent of all births occur in hospitals; but the women who comprise the remairiing 2 percent are not all women who have chosen

the home birth option (18). Some women give birth without adequate

assistance or care and have not had the advantages associated with early

identification of risk factors likely to complicate the delivery and/or the

health of the infant. For them and their infants, childbirth can be a risky

event. Indeed, although the decline in maternal mortality in this century is .

due to a variety of factors, the contribution of health services surrounding

childbirth to reducing such mortality is clear. Thus, we must not only

increase' the availability of prenatal care, but must also assure that women have access to delivery services that are appropriate to their level of risk

and to their personal preferences. Postpartum services form the final component of this set of services and

complete the minimum basic set of essential services associated with

childbearing. We call special attention to the 6-week postpartum checkup

that typically includes family planning services_

2

O 195
Comprehensive Health Care to infains and Preschool Children through

Ate 5 (19) WNW The value of competent, comprehensive health care for infants and

young children in 'providing a basis for lifelong health is dear and, in the

Panel's view, of equal importance to maternity care. in the area of

prevention especially, children are uniquely fortunate in the range of

effective preventive service:. available -to them in these early years. Some

are highlighted below.

At birth, scteening tests for such conditions as phenylketonua is (PKU)

and congenital hypothyroidism can detect significant health problems

that, if undetected and improperly managed, can lead to serious adverse

health outcomes such as mental retardation. Long-term experience with

screening programi for PKU indicate the success of these programs in

detecting children for whom a dietary change will mean the difference

biiween normal functioning and mental retardation. These programs are

clearly cost-effeetive and have proved' readily feasible. The PKU program

-stands as a model for the development of screening services for other

diseases and disorders that can be identified at birth. Similarly, recent

experience with universal newborn screening for thyroid disease has

demonstrated that this simple procedure is efficacious and clearly costeffective (20). Screening tests, including prenatal diagnosis, are also

available for the early detection of sickle cell disease. Mortality can be

reduced by extri.; detection, and therefore screening for sickle cell disease

in the first year of life should be a component of every black infant's

health care. Routine neonatal care also includes intramuscular administration of

vitamin K to prevent the bleeding that occasionally occurs in newborns,

and instillation of an appropriate solution to the eyes to prevent serious

eye infections, same leading to blindness, that might occur if the mother

has gonorrhea. Immunizations in infancy and childhood are among thevsafest and most

effective measures for disease prevention. Widespread vaccination has

eliminated smallpox and led to marked declines in the incidence of

diphtheria, measles, whooping cough, polio, rubella, and tetanus.

Other forms of early intervention are also effective. For example, early

detection of hearing impairmentsuffered by approximately 10 percent of

children--and prompt attention to an infant's communication needs

dramatically reduces the serious secondary consequences of hearing loss, .

including possible inhibition of cognitive and language development As a

result several expert panels have recommended that children who meet

specified criteria receive full audiological assessment between 2 and 6

months of age and periodically thereafter. The importance of detecting

vision defectsaffecting close to 20 peicent of childrenis equally

compelling in the preschool period. Screening some populations of young children in urban areas for lead

poisoning and tuberculosis is also of great value. Since the discovery the

mid - 1950's of serious environmental endenak. lead =poisoning, child health

professionals. long aware ofthe devastating effects oflead poisoning, have

urged employment of the relatively simple procedures needed to sample

196
lead in the environment and detect lead levels in individuals. Routine

preschool examinations can include screening for markers of lead

poisoning and, if a problem is detected. lead to appropriate management.

Similarly, screening for tuberculosis is efficacious and easily performed.

Although the incidence of tuberculosis has dropped considerably in the past 20 years. the disease is still common in some communities.

particularly where there is overcrowding. Furthermore, new immigrants to

the country have often been exposed to tuberculosis in their countries of

origin Various measures of maturation and developmental assessment go hand

in hand with screening and immunization activities. Serial measurements

of height and weight, properly recorded for ease of comparison, are the

most objective indicators of normal or abnormal physical growth. Failure

to grow at the usual rate for a specific age, height, and body type may be

the first indication of serious difficiigy. For example, abnormally rapid growth in head circumference early in life may be a warning of hydrocephalus. and slow growth in head circumference may indicate

failure of brain development. Other findings that deviate from the norrimal

may also be an indication of future problems. Hypertension, Which can

now be recognized in infancy, may in children and adolescents occasionally be an early sign of serious renal, vascular, or endocrinologic disease. Although it is not yet known whether therapy during childhood will alter

the prognosis for primary hypertension, or what the precise relationship is

between childhood and adult hypertension, it is prudent to be aware of

each child's status until current studies provide predictive and therapeutic

direction. Delayed development in gross motor, fine motor, adaptive, language,

and personal-social areas may indicate only normal differences in rates of

development or may itilagest a wide variety of serious problems, some of which are amenable to intervention. No single method for testing

development has been proven superior. However, careful developmental appraisal and subsequent diagnostic studies may uncover sensory defects,

muscular or neurologic disease, or emotional deprivation. Another preventive service which in the Panel's view is of enormous

importance is counseling and anticipatory guidance to parents of preschool children_ Elsewhere in this report, such issues as accident

prevention for young children; - infant stimulation, and the importance of

sound nutrition in early life are discussed and their role in child.health

outlinec..1 The significance of these health topics cannot be overempha- sized, nor can the value of helping parents care for their children

effectively be overstated. The case for prompt, early treatment of young children is as compelling

as that for primary preventive services. No preventive health examination

or screening is complete unless treatment is obtained for identified

problems_ Indeed, the distinction between treatment and prevention at

this life stage is somewhat artificial. Most significant health problems that

arise in this period have lifelong consequences if not effectively managed.

Untreated otitis media can evolve into conduction deafness; neglected

strop infections can develop into rheumatic heart disease or nephritis; and

untreated tooth decay can lead to loss of teeth. Thus,..treatment services in

197
childhood are often preventive services when viewed over the full life

span. One treatment service with major preventive implications is neonatal

intensive care, a service that should be fully available to all newborns. In

the past. infants born seriously ill and/or of very low birth weight often

died; those who did not were at high risk of suffering deficits in both

mental and physical development. With the recent introduction of

neonatal intensive care, however, such risks have declined significantly. A

1980 paper developed for the OTA concluded: "... Over the past 10-15

years, or since neonatal intensive care methods have been applied, there

has been a dramatic improvement in [the] survival of low-birth-weight newborns, and most of the survivors are normal. ... The widespread

application of neonatal intensive care appears to have played a major part

in producing the improved survival as well as the improved physical

condition of very low-birth-weight infants [in years]." This paper

also noted that rising birth rates and the high level of risk factors such as

teenage presnancy, smoking, and low socioeconomic status associated

with low birth weight are likely' to create an increasing need for intensive

medical care of the high-risk newborn over the next decade (21).

The central message to be drawn from this brief survey of services in the

first years of life is simple: early infancy and young childhood arc critical

life stages during which vulnerabilities are great and the possibilities for

helpful health care interventions numerous. if a child is helped to mature

through this period 'safely, with preventable health problems avoided, with

others identified and managed as early as possible, with effective measures

such as immunizations taken to avoid later health problems. and with the nurturing capacities of his or her parents developed and supported, the

young persiin's chances for a healthy childhood and adulthood are

increased dramatically. Nonetheless, many children do not have access to the care they need.

As recently aa. 1976. a third of all children under 10 were not properly

protected against seven major childhood diseases, and in the following

year rubella cases for children under 15 years increased by 63 percent, measles cases by 39 percent and whooping cough cases by 115 percent. Since then, as noted in chapter 1. these percentages have been cut

significantly. due in large measure to the highly effective Childhood

Immunization Initiative. Although the immunization story is at present a hopeful one, other

measures of child health status and use of health services are not so

reassuring. For example. data from the EPSDT program of Medicaid

demonstrate that the stereotype of children as uniformly healthy is untrue,

particularly for the poor children touched by this program. The Children's

Defense- Fund study of EPSDT concluded:

One thiiig screening data make clear is that most children screened.

by EPSDT are suffering from health problems and desperately need

the services of EPSDT. Nationally, for every three screenings, two

conditions needing followup care were found (12). Common problems that were not being cared for included dental

problems. low hemoglobin levels, vision difficulties, chronic upper

respiratory problems, elevated lead levels in the blood, genitourinary

198

411 a.
infections, hearing moblems, skin problems, parasites, orthopedic problems, and proble=is with the heart and circulatory system. Specific

measures in selected States are-vspecially troubling. In 1978, for example,

34 percent of the el--tildran screened in Louisiana had a vision problem, 3.5

percent of the chirdren screened in Connecticut exhibited signs of lead

poisoning, and a -f.--.3s1 90 percent of the children examined in Mississippi

had demonstrable dental problems (14). Cost-effectiveness for the cluster of services typically utilized in the first

several years of life is difficult to calculate, primarily because such services

are actually a combination of many individual interventions, each of which would have its own cost-effectiveness ratio. The research that would

be needed to assess fully the costs of providing none of these services is

neither ethical nor feasible. However, for selected individual services in

these early years, such as immunizations and screening for such conditions

as PKU and congenital hypothyroidism, the cost-effectiveness data are

impressive; some are presented in chapter 1. Even neonatal intensive care

-serviceswith, an average cost estimated to range as high as $40,000

have been fudged cost-effective. The OTA report mentioned earlier

concluded _that neonatal intensive care is cost-effective for infants over

1,000 grams and may even be so for infants weighing less than 1,000 grams

(21). We caution, however, that the methodological complexities of such

calculations arc great and that in this area as in many others, cost-benefit

analyses are of limited value. More to the point is the fact that, in the

aggregate, services to preschool children are low-cost items, not only in

-absolute terms, but also in terms of their long-term benefits to health.

Family Planning Services

It is obvious that a child whose birth is eagerly awaited has the best chance of getting a healthy start in life. A wanted child is far more likely

than- an unwanted one to enter a loving, nurturing home environment that

encourages healthy growth and development. Similarly, a woman who welcomes her pregnancy will probably adhere to the health practices

necessary to increase the chances of a successful pregnancy outcome. Few would question, therefore, that every child should be born wanted and

loved; most Americans now feel that policies assuring the availability of

_family plormiTig should be endorsed as a means to that -end.

A voluminous body fq- research indicates the timing of a birth (when the mother is neither too young nor too old), adequate intervals between

births, and family size limitations are closely related to better maternal

and infant health. Infarkt mortality, low birth weight and stillbirths can be

reduced through family planning (22, 23). For example, it has been shown

that almost a third of the reduction in the -U.S. infant mortality rate between 1965 and 1972 resulted from shifts in the timing and spacing of

births and, hence, from individual family planning decisions (24). A study of low-income Maryland women found the greatest decreases in infant

mortality occurred in areas that had made the most progress in serving

women in need of family planning services (25). Family planning can also contribute to a woman's health. Having a

large number of children is frequently detrimental to a mother's health,

199
0

FY 68

I I FY 70

I FY 72

Year

I

3

I I I

FY 74 CY 76

Patients served in organized family planning programs: United

States, 19613:76,

2- fr. Ir
and women bearing a fifth or higher order child experience maternal

mortality rates_as much as twice as high as do women bearing a second,

third or fourth -child_ Women giving birth in their teens or after the age of

:?5 run increased risks of death and complications such as toxemia,

eclampsia, and hemorrhage. Too short an interval between births also has

a deleterious effect on a woman's physical, mental, and emotional wellbeing (26). The use of contraception to prevent unwanted pregnancy has gained

wide acceptance in the United States_ By 1976, 9 out of 10 married

Americans were using some method of contraception or had been

surgically sterilized (27). There was also increasing use of contraception

by sexually active unmarried persons as growing numbers of young

working people, teenagers, divorced and separated persons sought to

prevent unintended pregnancy. With the advent of the publicly supported

family planning programs: the gap in contraceptive use between rich and

poor, and blacks and whites has narrowed significantly and all segments

of the population have come closer to achieving their desired family size

(28). Despite the great value of family planning services, it is apparent that

there still is an 'unmet need for such care. Although unwanted and

mistimed childbearing has declined substantially in recent years, it still

presents a serious problem for many Americans_ An estimated 2.8 million

unplanned pregnancies occur each year, half of them tennimi.ted by

abortion (29). Almost 16 million women at risk of unwanted pregnancy

are not receiving the health care necessary for the safe and effective use of

contraception. Three million of thes:.-. women have low or marginal

incomes and 1.8 million are teenagers who need subsidized care (30).

Family planning services are essential not only to meet remaining

unmet needs, but also .-* to sustain the ability of those already practicing

family planning to continue doing so. From a public policy point of view,

the value of continuing and expanding family planning services through a

variety of provider arrangements in both the public and private sec: ,-)r is

indispntable: (See chapter 7.)

_ Service Domains of Special Priority

The second major Panel finding that emerged in the process of

developing our lists of needed services is that four additional groups of

services merit special attention_ These include: mental health and related

psychosocial services, dental services, genetic services, and services that

promote ace..ess to care_ Although each has unique attributes, they have in

common not only their importance to health but also the fact that they are

not now adequately available, especially to some of the groups most in

need of them, and that they have not been accorded sufficient prominence

in current views of the essential components of maternal and child health

care services. By singling them out for specific discussion, the Panel hopes

to strengthen the national consensus regarding their value in health

promotion.

2 I g

201
Mental Health and Related Psychosocial Services

Mental health services and service; related tb psychosocial issues are

prominent in the lists of needed services developed by the Panel. This

emphasis is based on the evidence that mental disorders and psychosocial

problems are significant components of the total burden of illness in

children and their families, and the fact that the profile of child health

needs has shifted significantly in recent years. Whereas survival concerns

and the threats posed by infectious diseases were the central focus of child

health in the past, we are now confronted by a challenging blend of

problems with interwoven psychological, social, environmental, and

organic components. Although precise estimates of the prevalence of mental disorders in

children are difficult to make due to various methodological and

definitional limitations, mental health problems in children are sufficiently

common to constitute a major concern in any discussion of child health.

For example (31): Surveys of general populations show that the overall prevalence of

persistent and socially handicapping mental health problems in

children aged 3-15 years is about 5-15 percent. Conduct disorders and impairments or delays in development

may affect up to 10-percent of boys 7-10 years old. Mortality due to suicide in adolescents 15-19 years of age has

increased from 3 deaths per 100,000 in 1950 to 10 deaths per

100,000 in 1977. Estimates of attempted suicide range as high as 1

out of every 1,000 adolescents. Psychotic disorders appear in childhoodautism, for example,

occurs in about 3 or 4 children out of every 10,000. In addition to such direct measures, an additional set of broader social

indicators suggests that a large proportion of children are under significant emotional stress and at risk of developing mental disorders_

For example: Each year, approximately 1 child per 1,000 under 4 years of age

suffers serious injury initiated by parents, and about 1 in 10 of

these injuries proves fatal (31). By conservative estimates, at least 2 million children have severe

learning disabilities that, if neglected, can have profound mental

health consequences for the child and family (32).

On any given day, 20,000 youths are in some kind of criminal

detention; adolescents are involved in more than half of all serious

crimes reported in the United States. (5).

Some 11,000 girls under 15 become pregnant and give birth each

year (30). In the face of such evidence, the Panel is deeply concerned that mental

health and related psychosocial services be fully available and adequately

valued as major components of health services directed at child health

promotion. The Nation's commitment to improving and extending

medical care services must be matched by equal attention to assuring that

a range of high quality mental health and psychosocial services is

available, including hospital-based and ambula:ory mental health ser202
vices, long-term psychiatric care, counseling and anticipatory guidance provided in many settings, crisis intervention, and related services.

Further, special attention must be given to eliminating major gaps in

services. For example, mental health services for adolescents are clearly

inadequate, despite the widely shared recognition that behavioral problemsincluding accidents, homicide, and suicideare among the most

significant burdens in this population and in some instances are

increasing. We also call special attention to the need for closer integration of

mental health and general health services for children and adolescents and

indeed for the full population, particularly at the primary care level where

so many child health issues are managed_ This perspective is based on a growing appreciation of the inseparability of mental health and physical

health. It is increasingly well recognized, for example, that the benefits to an infant of a warm and caring environment are expressed in both

physical and emotional well-being; that various psychological stresses in

childhood can be linked to such somatic problems as insomnia, gastrointestinal disturbances, and headaches; and that nutrition-related disorders

. such as anorexia nervosa are based largely in psychological and emotional

difficulties. Moreover, it is apparent that the proportion of children seen in

the general health care sector having behavioral, educational, or social

problems is much higher than has been generally assumed. One recent study of seven primary care facilities detected at least 5 percent and as many as 15 percent of the children seen in 1 year in all but hospital

teaching facilities as having such problems (33). It is also apparent that such children typically remain in the general health sector for mental health care. In chapter 7, the Panel discusses the implications of this

intertwining of mental health and physical health services for the

organization of care for children. Although we focus on formal and definable professional services in that

section of our report and in the discussion that follows, it is also important

to recognize the great importance of personal and social support systems

in maintaining mental' health and preventing the development of serious

mental and emotional disabilities. When we have problems, most of us

initially turn for help to families, friends, neighbors, schools, religious

institutions, self-help groups, and voluntary associations. Without impairing the autonomy, natural strengths, and effectiveness of these supports,

public policy must be designed to enhance their ability to contribute to the

mental.health -f Children and families. In the brief sections below, we take up the special need for mental health and related psychosocial services of children who are mentally

retarded and those with serious physical handicaps or chronic illnesses,

and the importance of anticipatory guidance.

_Special FocusMental Health Services for the Mentally Retarded

Each year, an estimated 100,000 children are born who will be identified

as mentally retarded sometime during their lifetime, and approximately one-third of all mentally retarded persons suffer multiple handicaps, including mental illness, epilepsy, cerebral palsy, and other disabilities.

203
Some 200 known causes (and untold others) precipitate mental retardation, of which genetic defects, biological diseases, birth injuries, and

psychological or social deprivation are the most common_ The level of

disability ranges from barely noticeable to a profound inability to think or

respond to one's surroundings (34). Being __mentally retarded does not mean that mental illness is also

present nor that it will develop; but it is also true that the incidence of

emotional and mental problems is higher among the mentally retarded

than among the general population_ For some mentally retarded individualsapproximately 2 million of whom are 18 or undermental health

services are an essential part of the total range of services needed to

maintain an optimum level of functioning. When mental illness is present, it may be acute or chronic, mild or severe. Traditionally, these people have "fallen through the cracks?' They have, unfortunately, been

neglected by both the Iental health and mental retardation systems. The reasons for thit. are complex, but include the gradual separation of

the mental retardation system from the mental health system in the last 20

years; the frequent lack of knowledge of mental health professionals and

primary care physicians about mental retardation; the fact that, at times,

mental retardation has been confused with mental illness, leading to

public misunderstandings and inappropriate services and systems; and the

tendency to think that mentally retarded persons cannot benefit from

various behavioral interventions. Too often, the mentally retarded child or

youth is shuffled among mental health, mental retardation, and correctional institutions. Some States report that only limited services are

available for mentally retarded persons in local community mental health

clinics. Others note the low priority given mentally retarded persons in

local clinics and the frequentreferrals to State hospitals.

The Panel concurs with the President's Commission on Mental Health's

Liaison Task Panel on Mental Retardation that a high priority be given to

improving the delivery and accessibility of mental health services for

mentally retarded persons. In particular, we urge that the National

Institute of Mental Health be given special responsibility for assuring that

federally funded mental health programs give adequate attention to the

treatment of emotionally disturbed mentally retarded. children_ The

implementation of the Community Mental Health Systems Act represents

an ideal vehicle for this purpose. As is the case for all families having a child with severe problems,

support services to the family of mentally r- Larded individuals are alto

most important_ The emotional impact for parents of having a mentally

cv..artled child cannot be minimized. Such an experience may exacerbate

basic anxieties in parents and may represent a mental health problem for

which help is warranted. Their needs require a special sensitivity and

understanding of the meaning of having a mentally retarded child. Many

parents need help to cope with the many practical problems of raising a,

retarded child as well as with their own emotional reactions to this

burden, especially if they are maintaining the primary responsibility of

caring for their mentally retarded child (34).

204
Special FocusMental Health Services for Children with Serious

Chronic Illnesses and Handicapping Conditions and Their Fprviiiies

The importance of mental _health and related psychosocial services for

children with serious chronic illnesses or handicapping conditions and

their families is almost self- evident. This issue is discussed here and also in

chapter 8 within the broad Context of increasing the cr nrdination of

services. A chronic illness or handicapping condition creates problems for

the individual and the family that can often be eased and managed with

appropriate help. For the child, the stresses are not just related to the

specific problem (e.g., malaise, pain, or other physical symptoms or

disabilities). They are also related to, the frequent hospital ad=assions and

the treatment procedures some individuals require (medical and surgical), the changes in the emotional climate of the family, and the possible

limitations on peer and other social interactions. There are also pressures

that relate to specific health problems. For example, a child with a seizure disorder may fear loss of consciousness or uncontrollable strange behavior; hemophiliac children must restrict their physical activity and

are constantly concerned with avoiding injury; and children with chronic

renal disease must handle frequent hemodialysis, possible kidney trans- plantation, as well as the side effects of the immunosuppressive drugs. Counseling services play an especially critical role in the management

of selected chronic illnesses. In children with diabetes, for example, emotional stress or problemsand even the ordinary pressures of daily

lifecan lead to noncompliance with the therapeutic regimen, manifested

by omitting insulin injections, falsifying urine test reports, eating indiscri- minately, not exercising, or not keeping appointments. Education and

preventive psychological counseling can minimize such problems. Unless

the child and famiry are helped to ease the pressures associated with

noncompliance, there may be increased crises, need for hospitalization,

and possibly other complications(35).

A Tecent study confirmed the value of counseling for chronically ill

children. Each of 20 lay counselors was assigned to several families having

a child with a chrOnic physical disorder. These counselors provided a

variety of services ranging from direct counseling of the child and family

to such support services as advocacy, service coordination, and transportation. At the end of the first year, an evaluation of the program revealed

that ". . of the 50 children in the counseled group, 33 (60 percent) showed

improvement in psychological status, compared with only 17, (41 percent)

of the 42 controls who were not counseled. Conversely, only 33 percent of

the study children showed a 'Worsening in [psychological status], compared

with 52 percent of the controls." The physicians of the children also noted

the value of the counseling programs. "Of 19 doctors, 17 observed some

direct benefit from the programs to families and were able to cite specific

examples: improved relationships within the family, more regular attendance at appointments, greater' compliance with instructions and closer

links with the school and other community agencies" (36).

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Many of the adjustment problems faced by chronically ill and

handicapped children are exacerbated by adolescence, which suggests a

special need for the availability of-mental and psychosocial services at this

stage_ In early adolescence, cognitive development has progressed sufficiently so that the future begins to assume definite shape, arid the

implications of chronicity become very potent. This realization can result

in a variety of responses, from greater determination to adapt successfully,

to depression and noncompliance with various medical regimens. Further,

some conditions such as muscular dystrophy and cystic fibrosis continue

to deteriorate through childhood so that by adolescence the child may be

more dependent on others for basic care. This increased dependency, at a

time when greater independence is expected, can be very difficult for both

the handicapped child and the family. The family often requires specific support. The problems presented to parents by a chronically handicapped child are special because they

demand that the family acquire certain knowledge that other families do

not need. They must learn, for example, about special diets; about

financial resources and the complex processes for securing them; about

now to explain to school teachers what their chilcrea.i. I and cannot do;

andnot the least importantabout how to manage their own feelings,

frustrations, and disappointments. The financial costs to a family, both direct and indirect, are also a source of stress. Furthermore, parents usually cannot turn to friends and neighbors for help and information,

because they are not familiar with these problems or because they react

adversely to the handicap. In this connection, we also note the importance of supportive care to

parents of very premature infants. Although such infants are not usually

handicapped or chronically ill as discussed here, their early birth and

often precarious situation in their. first weeks of life put great stress on the

parents that, if not eased through appropriate counseling and help with

practical problems of caring for such infants, may have a negative

influence on parent-infant attachment and on future parenting competence (37)- The need to bolster the family in these varied circumstances is great.

The most important factor in determining whether handicapped children

are more likely to experience emotional or behavioral probJeni than

normal children appears to be the level of family functioning, and that,can

often be strengthened by appropriate supports. If, in spite of the handicap,

the family is able to provide a fairly stable, supportive, caring environment

for the child, he or she is less likely to develop maladaptive patterns of

behavior.

Special FocusAnticipatory Guidance

Included in our lists are a- number of services labeled anticipatory guidance, long recognized as a major component of pediatric practice.

The Panel singles out this service for special mention because, although it

is often thought of as a 'soft serOice" (i.e., difficult to define precisely), we

share the widespread c-.3nsensus that anticipatory guidance is an essential

part of the health services needed by mothers and children. Although the

206.

,
specific topics vary by .age of the child, the parents' need for clear and

reliable information regarding various child-rearing issues and for a

sympathetic and informed advisor when problems arise remains great. Indeed, many pediatricians in practice will report that such guidance and

counseling to parents is one of the most important components of the care

they offer. In the course of routine well-child care, for example, parents

frequently require information regarding infant feeding, minor behavior problems, and general growth and development_ Such issues are typically handled by the provision and exchange of information leading to

enhanced parent understanding, confidence, and competence_ Such

guidance is especially helpful to parents in handling temperamental differences in children, unrealistic expectations, and unfounded anxieties_ Anticipatory guidance to parents regarding, for example, accident

prevention and home safety are essential components of prevention- oriented care for young families. Similarly, in the practice of obstetrics, it

is difficult to overemphasize the value of guidance to a pregnant woman

about, for example, how to recognize the onset of labor, the use of

medications during pregnancy, and ways tc.. avoid exposure to various environmental risks (38, 39). In our view, such services are critical components of care, and we urge that research on such services be

increased so their effectiveness can be better documented.. We note, however, that to establish the value of such services will require sustained

attention to developing new outcome measures appropriate to such

psychosocial interventions. This issue is taken up at greater length in

chapter 13:

Dentsd Services

Dental caries is the primary cause of tooth loss through young

adulthood, and 55 percent of children in junior high school and 65 percent of _ high school students have periodontal disease. According to the

American Dental Association, by age 17, eight or nine permanent teeth

have decayed, been filled, or are missing and 97 percent of this country's

poor children need dental care. By age 35, the average American has lost 5

teeth and has 11 more attacked by caries_ Thirty-three percent of the

elementary school children aged 6-11 in the United States have two or more decayed teeth_ In addition, for same age group, the total Decayed, Missing, Filled (DMF) Index for permanent teeth is 1.7 per child; the incidence and prevalence of caries as measured by DMF for

adolescents (age 12-17) rises about 1.0 DMF tooth per year with the

incidence of caries in adolescents being twice that of younger children_ With regard to periodontal diseasewhich is a progressive, destructive

lesion of the dental supporting apparatus and the primary cause of tooth

loss in persons over 35 results of the Health and Nutrition Examination

Surveys conducted in 1963 and the early 1970's indicated that gingival and periodontal disease treatment and decay treatment constitute the major

areas of dental treatment needs when all ages and sexes are compared on

an aggregate besis. Moreover, all agree that it may begin in childhood or at puberty. Both caries and periciaontal disease are progressive illnesses

that Ultimately result in the loss of teeth when left untreated.

207
The most distressing aspect of these prevalent problems is that most

oral diseaset are preventable; the oral health of adults is determined to a

large extent by the preventiVe and treatment services they receive as

children and by the oral hygiene practices and dietary habits they develop

during childho-od. Principal strategies to promote oral health of children,

and thus the full population over time. include fluoridation of water

supplies:` the use of a variety of fluoride supplements such as fluoride

tablets, mouthrinses, self-applied fluorides. and fluoride toothpastes (see

chapter 2); limiting the availability to children of foods and snacks that

encourage tooth decay (see chapter 4); education abdut oral health

generally and individual responsibility in particular for maintAining oral

health; and a variety of professional dental services embracing preventive,

therapeutic, and restorative care (40-42). It is apparent that none of '.he strategies are being pursued

adequately. The picture is particularly discouraging with respect to- the

availability and ttse of professional dental services, including those associated with the proper use of various fluoride supplements. For

example, the United States National Commission on the International

Year of the Child, in its 1980 report to the President, stated that 47 percent

of children in the United States under the age of 12 have never been to a

dentist for care (43)1\ Many factors in both the public and private sectors

contribute to this dismal figure including: lack of a national focus on the promotion of dental health.

Lack of systems to assure followup dental treatment for children

screened in the major federally supported screening program.

Under the current EPSDT program, only 25 percent of these who

are screened are actually referred for dental treatment and only

about 20 percent of those eligible under the program are actually

screened (44). Lack of inclusion of dental services in major health plans, especially the lack of federally required dental beneilTs in

Medicaid. Indeed, at present, Medicaid dental benefits that exist

at State initiative :=.re often being reduced. Lack of clarification of the role of hospitals, neighborhood health

centers, public health clinics, and dental school clinics in the

delivery of comprehensive dental services.

In chapter 7, we recommend a program for delivery of selected dental

services to all school-age children. Given the extraordinAry unmet need in

the dental area, and the clear effectiveness of preventive dental services,

the Panel assigns a very high priority to this proposal. Dental treatment has been cited as one of the greatest unmet health

needs of the Nation's handicapped children, particularly those in custodial

institutions. Three groups in special need of care are the mentally

handicapped, physically handicapped, and the medically compromisegi=7.

those with diabetes, arthritis, epilepsy, heart conditions, and hemophilia.

It has been estimated that only 10-25 percent of the Nation's practicing

dentists are willing to treat certain kin.ds,of handicapped patients in the

private office setting. Yet, in many caszs, even they are unable to do so

either because of the seriot'sness of the handicapping condition, or other

reasons such as architectural barriers (42). Established institutional

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facilities such- as hospitals and dental school clinics should play a greater

role in provision of dental services for severely handicapped children and

oz /youth.

Genedc Services

Genetic, diseases are among the most: widespread and burdensome

afflictions confronting contemporary society.. An estimated 6 percent of

the_ population, or 12 million Americans, suffer from diseases involving disorders of the hereditary material, the genes and chromosomes, and

genetic disorders account for a signiOcant percentage of the severe mental

retardation in the United States. Genetic disorders are present in nearly 5

percent of all live births and each married couple in the United States hsas

a 3-percent chance of having a child afflicted with a emetic disorder (45,

46).According to the National Genetics Foundation, over 2,000 genetic diseases have been identified. The incidence of these conditions varies.

For example, Tay-Sachs, which inevitably and painfully kills children

afflicted with the disease by age 5, is rare among the general population but relatively common among Eastern European Jews; the incidence of

spina bifida (open spine defects) and ancncephalia (absence of a brain) is estimated at 2 per 1,000 births; and the incidence of Down's syndrome

(mongolism) is closely correlated with the age of the mother and is

estimated to occur in I out of 800 infants born to women age 30, 1 out of

280 infants born to women age 35, and 1 out of 40 infants born to women

aged 40-44 (40, 47, 48). According to the Second Annual Report on the Administration of the

National Sickle Cell Anemia, Cooley's Anemia, Tay-Sachs, and Genetic

Diseases Act issued by the-National Institutes of Health: The costsboth economic and socialof genetic disease are

enormous. The cost to society of caring for those suffering from

Down's syndrome, for example, which is manifest by mental

retardation and which has an estimated frequency of one in 1,000

births, is approximately $1.7 billion annually. On the other hand, the

estimated medical bill for a child with Tay-Sof-11s disease ranges

from $20,000 to S40,000 per year for the 3 to 5 year average life span of such a child. Care for all Huntington's disease patients ranges between $110 and $125 million annually, and treatment for a

hemophilia patient averages about $12,000 per year. However extreme the financial cost may be, it pales in comparison to the

emotional 'impact on affectedindividuals and families (43). In the face of this burden of genetic diseases, a range of services has

evolved, . often called "genetic" services, that typically includes genetic

screening and testing, counseling, and treatment Amniocentesis is an important component of screening and diagnostic

services. About 100 of the 2,000 genetic disorders that have been identified

can be diagnosed-in a:fexus_during_the second trimester of pregnancy (15). A pregnant woman at risk of carrying a fetilsliffli cted---with-a-serious

genetic disorder because she has delivered a previous affected child, has been diagnosed as a carrier, or is over 35 (and so runs a greater than

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average risk of bearing a child with Down's syndrome) may undergo

testing through amniocentesis between the 16th and 18th weeks of

pregnancy. In the small number of cases where a severe abnormality is

found, the option of terminating the pregnancy may be considered.

Another recent advance in the prenatal detection of genetic disorders

has resulted from the high correlation between elevated levels of alpha

fet.)protein (AFPan important protein in the developing fetus) in the

maternal bloodstream and severe neural tut e defects in the fetus. Serum

AFP levels can be detected by a simple maternal blood test followed by

lailoratory analysis. Tests. finding elevated AFP levels are then followed

by amniocentesis to confirm the presence of a fetal defect. Although AFP

is used extensively as a screening technique in the United Kingdom, the

technology is still in the developmental stages in the United States. The

Food and Drug Administration currently is considering approving limited

domestic use of AFP testing with restrictions designed to assure the

procedure's efficiency and safety. It is critically important to the

responsible use of AFP testing that standards and procedures be

established to guide laboratories in their analysis of maternal serum as

well as health providers in their special responsibilities in offering and

providing the test. It is distinctly possible that, with rapid advances in

technology, additional simple and reliable tests for the detection of many

genetic disorders could be readily available in the foreseeable future.

Genetic counseling is an important- component of genetic services, and

can be defined as a communication process that attempts to help the

affected individual or family to (1) comprehend the medical facts

regarding, a genetic disorder, including the diagnosis, probable course of

the disorder, and the available management; (2) appreciate the way

heredity contributes to the disorder, and the risk of recurrence in specified

relatives; (3)- understand the alternatives for dealing with the risk of

recurrence; (4) choose the course of action that seems appropriate in view

of the risk, the family's goals and ethical and religious standards, and to

act in accordance with that decision; and -(5) to make the best possible

adjustment to the disorder in an affected family member and/or to the

risk of- recurrence of that disorder. The range of problems for which

counseling is provided is broad. InCluded are disorders resulting from

simple gene abnormalities, multifactorial interactions, and chromosomal

defbcts. Many conditions for which genetic counseling, is provided will be

less s4.4.11 defined genetically and include recurrent spontaneous abortion,

multiple malformation syndromes, or unclasified mental retardation.

Other issues include questions about the consequences of consanguinity,

premarital counseling, genetic evaluation of children placed for adoption,

and exposure to drugs or radiation before and during pregnancy (49).

Because of the health, financial, and emotional benefits of the emerging

field of genetic services to both individual families and society as a whole,

sufficient facilities, programs, and adequately trained persgnnel must be

available to accommodate the-increasing need and demand for services. In

recognition of the compelling case for increased genetic services, Congress

in 1975 enacted the National Sickle Cell Anemia, Cooley's Anemia, TaySachs and Genetic Disease Act(changed in 1978 to the National Genetic

Diseases Act), Title XI of the Public Health Services Act, which

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authorized Si) million a year to pay for statewide programs of amniocentesis, genetic screening, counseling and treatment However, the $8 million

funding of .this program in 1980 still falls far short of the $30 million

authorized by Congress and of the $15 million estimated by the National March of Dimes Birth Defects Foundation to be necessary to provide

`adequate prenatal genetic screening services for all those needing them

(SO). Without the State programs and cytogenetic lab facilities that were

expected to be funded under this act, services cannot be extended to many

in need. Data on...the use of amniocentesis suggest how great such unmet need might be. Although no definitive national data exist, it has been estimated

that only 20,000 of the 150,000 pregnant women over age 35 who each year arc at high risk of bearing a child afflicted with Down's syndrome

receive amniocentesis (51). There are many reasons for such low

utilization, including costs of the procedure and the limited number of

facilities and personnel able to perform it. Mary couples remain unaware of the incidence- of genetic diseases and of the availability of genetic

- services, including amniocentesis. There- has been no major nationwide public education campaign on the topic, and many publicly funded

programs and private physicians do not systethatically provide women of childbearing age with information about genetic diseases and genetic

services.

Access-Related Services

Early in this chapter, we noted that one of the reasons that the services

identified in the lists are not adequately available to mothers and children

is that a variety of barriers exist that limit the accessibility of such services. To increase access, this report advocates broad changes in the organization and financing of services, including an increased commitment to

strengthen and expand a set of specific services whose primary purpose is

to -facilitate entry into the health systemthe first step in obtaining needed health services. The significance of the access problem is

underscored by the data presented in this chapter and in chapter 1

documenting the fact that some children have never seen a doctor, that

major gaps in the use of needed services continue-to exist among various

groups, and that even . vitally important services such as prenatal pare are not fully accessible, particularly to populations at special risk. The Panel's

proposal in chapter 7 to increase home-visiting services is one major way

to help change this picture. Here we highlight the value of four other types of access-related services: outreach, transportation, telephone access, and

child care arrangements (52).

Outreach

For many families, health services are so inaccessible geographically or for other reasonsthat they cannot make use of them without help. Si ,me parents still do not know or understand what benefits early health

care would bring them and their children. This problem is acute among` parents with little education and among some from other countries where

211
health care is organized differently. Well-educated, affluent parents, too,

can be unsure whether a child's beha-rior or symptoms are normal or

whether they require professional attention. They are more likely,

however, to have family doctors or pediatricians whom they can call and

from whom they receive advice, assurance, or an appointment.

Sometimes health care programs must do more than provide an open

door. They must take the initiative to find, educate, and help bring in

mothers and children to receive care. In recent years especially, health

programs serving rural and low-income urban populations have found

that the use of trained outreach workers can solve many problems of

access. The experience of the Columbia Point Neighborhood Health

Center in Boston, Massachusetts, is a good case in point. Located in a

low-income housing area, one of its objectives was to encourage residents

who had previously not used health services to seek medical care regularly

and promptly. Outreach workers were a central. part of the strategy.

Although success cannot be attributed to the outreach and education

efforts alone, after 2 years of the program, a substantially higher

proportion of residents felt that general, preventive measures were

important and showed an increasing disposition to bring to the attention

of health center staff symptoms at an earlier stage when they were less

painful or disruptive. The proportion of families who reported that they or

someone in their family had postponed medical care in the preceding 6

months declined from 23 to 10 percent.

L. The American Medical Association, in its Statement on Health

Outreach. cites the variety of ways in which outreach workers, particularly

those who live in the area served by a health care program, can improve

services. Outreach workers:

Tend to enhance professional standards of practice because such

personnel can free physicians, nurses, dentists, and other health

professionals to better utilize the time for which they are trained

and extend the scope of services to a larger patient population.

Provide an additional source of manpower to meet community

needs, especially in those areas where there is a shortage of

professional health staff. ... Obviate many of the traditional problems of understanding and

communication in getting health services to those in need.

Assist the professional staff in becoming more responsive and

accountz ole to the community served-

. Provide meaningful jobs and, as a result, benefit the community

economically and socially. . Principles that enhance the effectiveness of outreach have been

enumerated by the Children's Defense Fund. They note that personal

contact is the most effective form of outreach, and that outreach is best

performed by trained personnel who share or are sensitive to the

background of the people being served. It should 1-_-.--- conducted in a

variety of places in a community, be supplem--...ited and reinforced by

training nonhealth personnel, and should link people to a syst/427 of care.

212
Transportation

Sometimes health care providers and facilities are only theoretically

-available. Long distances or high costs in getting to a source of care can be

major barriers to obtaining needed health services. For the poor, distance

appears to be a significant deterrent to seeking preventive care (53). Where health care services exist but are difficult or impossible to reach

because people lack adequat,e transportation, transportation services are a

needed component of the health system. They can be provided or arranged by. (a) modifying existing public transportation schedules and

routes to efficiently link patients and health care facilities, (b) reimbursing

families or patients for transportation' they can find themselves but cannot

afford, (c) contracting with other agencies to provide transportation to

health services, or (d) developing a program-run transportation system.

Telephone Access

The ability to obtain information and advice concerning health

problems over the telephone is critical. In an emergency, it may be a matter of life or death. In less urgent situations, the family that can easily

and quickly reach a doctor by telephone is more likely to seek information

about a health problem early in its course. This may, prevent the problem

from becoming serious, and helps parents use health resources most appropriately. Telephone access is particularly important for parents. It is well known

that pediatricians in private practice spend much time advising parents on

the telephone. This, however, is largely a privilege of the middle- or upper- class- parent. It is accepted practice for these mothers to phone in and

report a fever, a rash, or other troubling symptoms and receive guidance about what to do. Such access is rarely available to families of lower

income. Although most group practices have some kind of telephone

access, its absence in the clinics and outpatient departments serving the poor is a common byproduct offragmented, egL.odic, crisis-oriented care. The vast majority of poor and, minority children, in fact, have no

effective access to telephone advice at all. In 1974, 94 percent of the black

children and 'Al percent of the children with incomes of less than $5 000

had no telephone coquets with health care providers during the year, compared with 75 percent and 73 percent Or the white and high-income

children, respectively (54). Several studies indicate the feasibility of making telephone advice more

readily available. In one prepaid practice, for example, aides were trained

to provide appropriate telephone advice or referral for calls about

children's illnesses. Results showed that parents were very satisfied on the

whole, the bulk of problems were resolved by phone, and quality of care

was generally good (55). Equally successful was a telephone "hot line,"

installed in a diabetic clinic at the University of California Medical Center

'to -provide information and medical advice to patients and to fill prescriptions. It was estimated to have saved 2,300 patient visits for

213
medications alone during a 2-year period, with improved levels of patient

health (56). Such data undergird the Panel's view that there should be some tiroe

during the day when families can consult over the telephone about genera!

areas of concern with health professionals who are able to provide the

caller with appropriate instructions. Whenever possible, the medical

personnel giving telephone advice in nonemergency situations should have

a continuing relationship with the caller. In addition, every community

should have 24-hour, 7-day-a-week access for emergencies, and day and

evening access for acute health needs.

Care for Other Children

Many parents who need to bring a child in for care have other children

at home. Babysitters are normally hard to find during the day when older

children are in school. Even if one is available, some people cannot afford

to pay a sitter. In the evenings, when a family member could take care of

other children, health care facilities are usually not open. As a result,

many parents either put off getting care except in acute or emergency

situations or bring all of the children to the clinic. The burden of taking

several small children on public transportation and waiting with them,

particularly when one of the children is sick, is stressful for everyone

involvedparents, children, people giving care, and other people waiting

to receive care. Sometimes a simple thing like the lack of child care

especially in addition to other difficultiesprevents families from getting

health care altogether. In situations where the lack of care for other children is one of the

factors preventing families from getting health care, the health care

programs themselves must intervene on behalf of their patients. This can

be accomplished in several ways: Providing a child-care room right at the health facility where

children can spend the waiting time pleasantly without disturbing

others. Paying for babysitters the families themselves find.

Fat/I:ling or arranging with a group of babysitters in the community to go to homes as needed, These can be paid for by the family

or the health program. The experience of many programs suggests that the most -easily

managed and most helpful arrangement is to have a playroom as part of.

the clinic facilitiesprovided that it is realistic, in terms of location arid

transportation. for the mother to bring the children along. Such a

playroom should be under the supervision of a person trained to manage

small children. Whatever provisions are made for the other children, the

mother should be told about them specifically before she comes to the

clinic.

A Board on Health Services Standards

The third major finding of the Panel in the area of needed services

involves the creation of a new mechanism to serve a variety of functions

214
aimed at improving the content, quality , and availability of health services

for mothers and children- We refer to this mechanism as the Board on

Health Services Standards, although as we note below, it could be.' a

collection or consortium of existing organizations and activities rather

than re-newly created entity. Many services we have identified as "needed" are not now available

and utilized to an extent consistent with their potential to improve health

and prevent disease and disability. Examples include counseling services,

health education, various nutrition services, and access-related activities

such as outreach. One reason for the relative inaccessibility and underutilization of these services is that public and private third-party payers are

reluctant to finance them, in part because of the nature of the services

themselves. They tend to be difficult to define precisely, andin greater

measure than is true for medical services their effectiveness appears

closely related to the circumstances under which they are provided, by

whom, and in relation, to what other services. They also seem to raise more

questions than traditional medical services about how to measure and

assure quality, and how to prevent fraud and abuse. Given this situation,

the Panel found itself facing the following problem: we have found that

these services are important, even essential to promoting maternal and

child health, and that more people should have access to them without

financial barriers. We have also found these services are not adequately

available or used. Given such factors, should we simply recommend that

third-party payers offer to cover these services, and hope for the best? If

we were to make such a blanket recommendation, we suspect it might not

be implemented for the reasons already stated. Even if it were, and more

people presumably received the services, there would still be ir.sidec!uate

information on the effectiveness of such services and on the circumstances

under which they are best provided; the're,would- be no additional

information to aid in controlling quality or prof. -ting against abuse, and

no continuing evaluation of efficacy. And the cost of financing such

slzrvic= might well be unacceptable because information on how to offer

the services econoiically would still be lacking. We have chosen instead a more cautious approach that we -believe

represents a constructive, long-term solution to a difficult set of problems.

We recommend that a Board on Health Services Standards be treat or

existing institutions strengthened, better coordia ated, or perhaps even

consolidatedto perform the following functions:

1. Review and continually refine our understanding of what health

services should be available to mothers and children in light of

new knowledge and changing health problems.

2. Provide information' and guidance to all third-party payers,

purchasers of health insurance, and others (including professional standards review orgorni-7Ations and health planning groups)

regarding the efficacy, effectiveness, and appropriate use of a

given service or sets of services, and the circumstances under

which such services should be financed, taking into account considerations of quality, cost, availability; accessibility, and

appropriate utilization. 3. Provide information to all third-party payers regarding the likely

215

2-

Noir.
effects of their payment policies and practices on the availability

of needed services, professional personnel, facilities, and other

components of the health care system. (This particular function

is discussed in more detail in chapter 9.) The Panel is aware that there are currently a number of groups in

existence that perform some ofthese functions. For example:

The National Center for Health Care Technology (NCHCT) has a

broad mandate to provide advice on virtually all of these

intertwined issues of services, including their assessment, use, :aid

appropriate reimbursement. The research supported by the National Institutes of Health

(NIH); the Alcohol, Drug Abuse, and Mental Health Administration; the Health Services Administration; and the consensus

conferences of NIH especially contribute understanding about the

safety, efficacy, and appropriate use of specific procedures. The research supported by the National Center for Health

Services Research (NCHSR) and the Health Care Financing Administration (HCFA) contributes information on many health

system components such as manpower, organizational settings,

and payment practices, and relate such factors not only to each

other but also to specific health services_

The U.S. Congress' Office of Technology Assessment provides

useful guidance not only on general principles of technology

assessment but also on the costs, risks, and benefits of specific

technologies and the policy problems posed by them.

The problem with these efforts from the Panel's perspective is that they

rarely take up services in the domain of primary care for children and

pregnant women. The fragmentation and often ad hoc nature of these

efforts limits their capacity to develop broadly applicable norms and

standards of reimbursement or to provide the systematic guidance over

time to third-party payers that is so urgently needed. Further, we find that

these various activities are not sufficiently well supported or integrated .to

provide ongoing assessment of health care practices. Consequently, their

impact on shaping or redirecting existing payment practices has been

limited. The National Center for Health Care Technology comes closest in

stated mandate to meeting this general need, but, among other things, its

inadequate funding (about S3 million in 1979) circumscribes its value

considerably. The Panel also believes that these general assessment

functions will best be served by a body that is not exclusively governmental_A clear indicaiion of the inadequacy of the present array of institutions

is the recent proposal to create a National Professional Mental Health

Services Commission through an amendment to Title XI of the Social

Security Act. This Commission would be charged with, among other

things., assessing what is known about the safety, efficacy, and appropriate

use of various treatments for specific mental health problems, reviewing

the relationship of various professionals and settings to the effects of

selected interventions, and then recommending reimbursement policies to

the Secretary of the Department of Health and Human Services (DHHS)

for such services_

216
In our view, the time has come to systematize and draw together these

many bits and pieces into a permanent, well-financed, prestigious and

independent institution capable of providing expert guidance on how both

the private and the public sectors can promote and finance the health

services needed by mothers and children and indeed all Americans.

Although the Panel's recommendation arises from its concern about

improving maternal and child health service, we believe the issues that the

Board would have tc address cannot over the long term be separated by

categories of services or beneficiaries. We therefore believe that unless the

Board is established with an unequivocal mandate to perform the

functions we believe are essential to improve maternal and child health, it

might very well concentrate primarily on high technology and very

expensive interventions, in the hope of making some early dramatic

contributions to what are conventionally seen as the most pressing cost

containment problems. Issues such as the efficacy of home visits to

pregnant women and infants under nurse supervision, or counseling aimed

at accident prevention or compliance with prescribed regimens, which are

of enormous importance in the care of pregnant women and children,

might not be reached for many years. We therefore consider it absolutely

essential that the Board either be mandated to begin its work with services

important to improving maternal and child health, or that a definable and

significant portion of the Board's resources be allocated to this function.

With regard to the structure of the Board, we outline several essential

attributes: 1. The Board should have the capacity to draw on the relevant

competence of a number of agencies already performing some

parts of the functions we are proposing. Several of the most

significant are noted above.

. 2. For maximum credibility and acceptability, the Board should

have considerable independence from special interest groups of

all kinds, and probably from government as well. If it is to draw

on all existing sources of talent and expertise, conduct As -own

health services research as needed to develop guidelines and

advice, and be sufficiently influential to accomplish the ambitious mandate we propose, the Board should be established in a

manner and at a level that would give it a great deal of both

independence and prestige. 3. The membership of the Board should be broadly constituted and

include both experts in various aspects of health care and citizenconsumer advocates. Board members could be exclusively

nongovernmental, or could include several governmental representatives, such as the Surgeon General and the Administrator of

HCFA. The Board could be appointed by the President or the

Secretary of DIEIHS, or the power of appointment could be

shared.among several individuals or institutions.

4. We believe the authority of the Board must ultimately derive

from the quality of its findings. Although it would theoretically

be possible to make the advice of the Board binding, at least on

public third-party payers, we believe that this kind of authority

would not be considered acceptable in this instance. We suggest

217
that the guidelines and recommendations of the Board be

advisory, although it will be important to incorporate into the Board's mandate certain functions that would create some

pressures that would make it difficult, especially for public third- party payers, to disregard the Board's advice totally. For example, the Administrator of HCFA could be required to make

a public response to the Secretary of DHHS and the Congress in

those instances in which HCFA decides not to follow the

recommendations of the Board regarding the financing of a

given service. (Additional discussion of the reimbursement

practices of HCFA is in chapter 11.) 5. The Board must have resources adequate to its charge. The dismal funding experience of groups such as NCHSR and

NCHCT suggests the normal appropriations process is unlikely

to produce even a modest portion of the needed resources. An untapped and obvious source or funds is in the hands of thirdparty payers. The Panel proposes that a small percent perhaps,

less than 1 percentof the expenditures of the major third-party

payers be used to finance the Board for the purposes stated. The

logic is that the institutions currently financing the bulk of health

services have the most need of information regarding, for example, the efficacy of the procedures they pay for, the

circumstances that provide for adequate quality and efficiency,

and the effects on health services of various provider arrangements. The Board might also be set up in a way that permits it to

receive private funds. We recommend as a very high priority that the Secretary of the Department of Health and human Services convene an ad hoc group as

soon as possible. in consultation with the appropriate congressional

committees, the Assistant Secretary for Health, and the Administrator of

HCFA, to outline the precise nature, composition, and authority of the Board within the broad guidelines we have outlined and that the

Congress act rapidly to establish the Board. It 'might also be appropriate

to ask the Institute of Medicine (IOM) to consider this matter and make

recommendations. Indeed, the !OM might be a logical sponsor or home

for the Board.

REFERENCES AND NOTES

( / ) U.S. Congress. Office of Technology Assessment. The Implications of Cost-Effectiveness Analysis

of Medical Technology. Background Paper No. 1: Methodological Issues and Literature Review.

Washington. D.C.: U.S. Government Printing Office., September 1980.

(2) American Academy of Pediatrics. Standards of Child Health Care. Evanston. American

A=demy of Pediatrics, 1977. (3) American Cortege of Obstetricians and Gyneer.tiKist Standards for Obstetric. Gynecologic

Services. Chicago: ACOG. 1974.

(4) American College of Obstetricians and Gynecologists.. Standards for Ambulatory Obstetric Care.

Sapplemenc to Standards for Obstetric. Gynecologic Services. Chicago: ACOG. 1974.

(5) Task Force on Pediatric Education. The Future of Pediatric Education. Evanston. 111: American

Academy of Pediatrics, 1978. (6) Fiorence. E. and F. Barnes. Ambulatory Maternal Health Care and Family PLanning Services.

218

2
Policies. Priaaiples. Practices. Committee on Maternal Health Care and Family Manning, Maternal

and Child Health Section. American Public Health Association. Washington. D.C.: American

Public health Association. 1978

(7) American Public Health Association. "Proposed Benefits To Be Covered on a First Dollar Bans

nudge National Health Insurance.' July 16. 1974.

(9) Institute of Medicine. 'Preventive Services for the Well Population.- Background paper prepared

for the Ad HocAdvisoey Group on Preventive Services. prepared under DHEW Contract No. 282 -

7$-0D91 -FOP, Washington. D.C.. June 197$.

(9) U.S. Department of Health. Education. and Welfare. Public Health Service. Office ofthe Assistant

Secretary for Health and Surgeon General. Healthy People. The Surgeon General's Report on

Health Promotion and Disease Prevention. Vols. I and IL Washington. D.C.: U.S. Government

Printing Office, 1979.

(10) Canadian Task Force on the Periodic Health F-ssunination. "The Periodic Health Examination?'

Canadien Medical/Association Journal 121: November 3, 1979.

(11) Breslow, L. and A. R. Sonters. -"The Lifetime Health-Monitoring Program:- New England Journal

of Medicine 296: 601-604. 1977-

(12) The Children's Defense Fund of the Washington Research Project. Inc. Doctors and Dollars Are

Not Enough. Washington. D.C.: The Children's Defense Fund. April 1976.

(13) Ammon. S. S. "The Health Needs of Infants and Children Under Twelve': Klerman. L. V.

'Adolescents: Health Status and Needed Services": Kassel. S. S., et al- -A Child's Beginning." In

Better Health for Our Children: A National Strategy. Vol. IV. Washington. D.C.: US. Government

Printing Office. 1991.

(14) U.S. Department of Health. Education. and Welfare, Health Care Financing Administration- Data

op the Medicaid Program: Eligibility; Services. Expenditures. Baltimore: Medicaid/Medicare

Management Institute. HCFA Pub. No. 79-20005, 1979.

(15) U.S. Department of Health. Education. and Welfare. Public Health Service. Healthy PecPie. The

Surgeon General's Report on Health Premoticat and Disease Prevention. VoL I. Washington. D. C.:

U.S. Government Printing Office. 1979.

(16) Shorey. C. E. March of Dimes Birth Defects Foundation. Testimony presented to the Select Panel.

February I. 1990.

(17) The President's Coninsimion on Mental Health. Task Panel Reports. Vol. III. Washington. D.C.:

U.S. Government PrintingOffice, 1978.

( id) Kesel S. S.. .I_ P. Rooks.. and I. M. Cushner. -A Child's Beginning.- In Better 74ealth for Our

Children: A National Stiagosy. Vcl. IV. Washington, D.C.: U.S. Government PrintingOffice. 1980.

(19) The cutoff after age 5 is, of course. somewhat arbitrary. The justification for this limitation is that by

the time of their sixth birthday. children generally are in school. are likelier than preschool children

to have health problems identified and treated appropriately. More generally, the first years of the

chars life are a time when parental reliance on health providers for advice and services is likely to

be greatest. No other service sector shares equally with the 'health system the responsibility of

interacting routinely with parents regarding the infant's. toddler's, or preschooler's development

and wen-being.

(20) Bush. J. W.. M. M. Chen. and D. L. Patrick- Health Status Index in Cost-Effeeriveness: Analysis of

PKUProgram. Health Status Indexes. R.- L. Benz. ed. Clsicago: Hospital Rs:march and Educational

Trust. 1973. pp. 172-209.

(21) Budetti. P.. P. McManus. N. Barrand. and L. A. Heinen. "Costs and Effectiveness of Neonatal

Intemisive Care.- In The implications of Cost-Effectiveness Analysis of Medical Technology.

Background Paper No 2: Case Studies of Medical Teclusolocies. U.S. Congress. Office of

Technology Assessment. Washington. D.C. :: U.S. Government Printing Office. 1980.

(22) Oman, A. R. The Health Theme in Family Planning. Carolina Population Center. University of

North Carolina at Chapel Hill. 1971-

(23) Factors Associated With Low Birth Weight. United States. 1976. DHEW. Public Health Service.

National Center for Health Statistics. 1990.

(24) Morris. N. M. and J. R. ;_tdry. ''Shiftin` g Age Parity Distribution of Births and the Decrease in

Infant Mortality." American Journal of Public Health 65: 359-362. 1975.

(25) Thorne. M. C. and L. W. Green. The Contribution of Family Planning Prqranis to Health: From

Correlations im Caused' inference. Paper pee anted at the annual meeting of the Population

Association of America. Mont real. 1976.

(26) Oman. A. -Health Rationale for Family Planning." Population Chang A Su:to forPhysiCians.

Proceedings of the International Conference on the Physician and Population Change, Stockhohn.

1974.

219
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CHAPTER 6

IMPROVING THE ORGANIZATION.

OF HEALTH SERVICES

Primary care for children and pregnant women is currently provided

under a wide variety of structural and organizational arrangements, which

range from private physicians' offices to the public schools, and include health department and hospital clinics, as well as community health

centers and health maintenance organizations (HMO's). The diversity of 'current arrangements has advantages and drawbacks

Such pluralism means freedom of choice for both consumer and provider

in most communities, is likely to stimulate innovation in the delivery of

primary care, and may help to perfect cturent modes of delivery ( I). For

these reasons, our Panel considers . pluralism and diversity in delivery

arrangements an essential ingredient of a strong maternal and child health policy. However, many children anti pregnant women still do not receive

the services they need most, and many types ofprovider arrangements are

not organized to provide services as effectively as they might. To deal with

such problems, we advocate organizational changes designed to strengthen individual provider arrangements and increase the coherence of

provider relationships. In the Panel's view, effective provision and utilization of modern

primary health care for children and pregnant women must include access

to a broad array of services, provided over time and in a variety of

contexts by professionals in a number of different disciplines and with a

wide range of skills. It is because only a small proportion of primary care

is currently delivered through organizational arrangements that can make

available such care, that the Panel is advocating far-reaching changes in

the organization of provider arrangements. The element of organization facilitates comprehensive, integrated

primary health care in settings which encourage continuity; collaboration with parents and other family members; coordination of primary care

with needed secondary and tertiary services; linkages with other systems

serving children, such as social services and schools; systematic outreach

efforts to make certain services available where people already are;`- and

other techniques to remove or reduce access barritrs.

Our ,Panel reviewed the need for and benefits from a greater degree of

organization in the delivery of maternal and child health services with full

223
recognition that many families, many children. and many pregnant

*women are faring well in health care arrangements which are not highly

organized. and which are not always a gateway to a comprehensive array

of services. Furthermore. we realize that many consumers and providers

fear a greater degree of organization might mean less personalized care.

while administrators and policymakers are concerned that more organized

care may be accompanied by higher per visit costs. We are aware that many observrs have concluded that a more coherent

and efficient organization of services can best be achieved by funneling

public funds exclusively through one or two types of6 provider arrangements that have been determined to work best. There are also many who

believe unsolved problems of access and inadequate care are limited to a

few readily definable populations, and that any changes should focus only

on these populations of the very poor, persons living in remote rural areas

or in the midst of urban ghettos, and families characterized by a high

degree of disorganization. After extensive deliberations, which took account of the nature of

unmet needs, where they are found, and of successful and unsuccessful

efforts to meet those needs, the Panel concluded that:

American communities vary so widely in their needs and

resources, and prize so highly the diversity of their own ways of solving problems, that it is neither feasible nor wise to attempt to

move the Nation toward one standard way of delivering health

services to mothers and children. Specific attributes of organization that shoulcrbe encouraged

include those that promote continuity in the relationship between

the "provider and the family and patient, along with those that

promote economy of operation. The effective organization and structuring of services is most

important for families with handicapped, chronically ill or

severely ill children; for pregnant women who for social or

medical reasons are at high risk; for low-incOme families, who have greater needs for health and related services and fewer

resources to negotiate their way around a complicated maze Of

fragmented health services; and for those families and individuals

who have special problems which result in greate than average needs for a broad range of easily accessible services.

Since these categories of families include about one-fifth of all children and pregnant women at any one time, and between onefourth and one-third over a period of a decade (2-5), the need for more highly organized primary care is not circumscribed, but

spread widely throughout the population. Changes in the organization, financing and structuring of services

are the most promising avenue to reaching all those with unmet needs; .they are more hicely to be effective than attempts to

motivate people to surmount barriers which make care inaccessible and unresponsive to their needs. An analysis of access barriers

to child health services undertaken for the Select Panel concludes

that provider and system features arc critical in determining
patterns of utilization, and that most measures of utilization "can

be predicted as well from information about the individual's usual

source of health care as froin information about the individual's

socioeconomic status and attitudes" (6). Our a to the organization of health services for mothers and

children, t is based on the shared conviction that the pluralism and

-diversity of the health services delivery system in the U.S. should continue and that it is and will remain compatible with a commitment to reach all

children and mothers with the health services they need, as long as: A significant proportion of those providing primary care to

pregnant women and to children incorporate into their delivery

arrangements those attributes that improve the accessibility and

effectiveness of a broad array of services. All children and pregnant women have access to provider

arrangements which incorporate these attributes.

There are systematic ways of assuring the availability and

accessibility of all needed services to all children and pregnant

women.

We are fully aware that diversity, so appealing in theory, is often a

mixed blessing in practice. Health departments that have struggled, woefully underfmanced to provide a well baby clinic here, a V.D. clinic

there, immunizations and family planning on other days and in other

places, are dismayed to find new sources of Federal funds for comprehensive health centers being funneled to a hospital or community group two

blocks,away. Pediatricians in private practice, their numbers increasing as

the numbers of children in their community decrease, are appalled to

learn of a new Federal or foundation grant to the local school board to

train and employ nurse practitioners to provide comprehensive primary

care in local elementary chools. And a community group is mystified at

how so much money for health services can come into their area while the

children most in need of continuing hcilth supervision still have their only

contacts with the health system through an occasional trip to the hospital

emergency room. But diversity does not have to mean chaos, gaps, or waste. The

organization of primary care may differ fundamentally between Denver

and Cleveland, and between an Iowa county and a Mississippi county.

What matters is that in each, appropriate services are availableunder

any combination of provider arrangementsand that there are responsible authorities to assure that resources are allocated in ways that will make

needed services accessible to all.

In the remainder of this chapter, we describe the attributes which we

have identified as important components of effective primary care

provider arrangements, and examine the specific ways that various

provider arrangements should be strengthened. In chapter 7 we discuss several issues that cut across a variety of provider arrangements, and which have important implications foi the

organization of health services for mothers and children. In chapter 8 we present our conclusions and recommendations

regarding the organization of services to assure that needed health services

225

2 j,
will be available to certain population groups with special needs and

special access problems.

PROVIDER ARRANGEMENTS

In reviewing the broad array of provider arrangements successful in

providing needed primary health care services to children and pregnant

women, we identified nine characteristics that seem to be . important to

their success. We believe these nine attributes ofprimary care units are so

important. especially to populations at greatest risk. thatover time

they should be Incorporated into all primary care settings. They include

comprehensive services, accessibility, capacity for outreach..,coordination

of services, continuity of care, appropriate personnel ai-r- angements,

accountability, consumer participation, and partnership with parents, as

detailed below.

Comprehensive Services

Primary care units should offer a broad range of health services.

psychological and social as well as medical. The primary care unit should

be able to meet the great majority of the health needs of the population it

-serves, whether pregnant women, infants and children, or whole families.

The services available should encompass preventi--e acute, and ,curative

care; management of long-term illness; the counseling of parents,

children, and adolescents regarding psychosocial problems ana other

elements cif health maintenance, promotion, and protection; and active

efforts to 1puild on the family's strengths and resources as well as to help it

cope wi problems and vulnerabilities. It should also include wellestablish d and well-functioning links to sources of secondary and tertiary

Care.

Accessibility

care units should be accessible in terms oflocation. transportation, abpence of psychological barriers, and hours during which servi9ps

are either provided or arranged for. The primary care unit must be

reachable at all times, either directly or through a reliable arrangem4. t

known Ito the families served and systematically linked to the unit. The

physic-ell location of the primary source of care, available transportation,

hours of service, and the circumstances in which care is provided must

make it conveniently accessible to actual and potential users, and must be

responsive to their needs.

Capacity for Outreach

Primary care units should have a capacity to reach out into the

community they serve, so as to eliminate or minimize economic,

geographic, social, cultural and language barriers to the appropriate use of

226
health services. Outreach is especially important for primary care units

serving low-income persons and other population groups that have not

been effectively reached by the health system in the past. Outreach can be

provided directly by the primary care unit through such mechanisms as

outreach workers and home visitors. Small primary care units can provide

outreach indirectly in cooperation with local community organizations

and agencies.

Coordination of Services

Primary care units should be the place and the mechanism For

coordinating all health services needed by an individual or family, through

a working partnership among a Variety of health professionals, active

collaboration vAth patients and their families, and a strong relationship

with other service systems in the community. such as the schools and the

welfare system. The primary care unit should coordinate all elements of

the patient's care, including that provided by other health professionals

ateif institutions, and the participation of other agencies and providers,

including those from the welfare, correctionji i. and educational systems.

This involves referrals, the exchange of information with other providers

of service, and explanations and exchanges with patients or families to

achieve a greater understanding, and modifications as indicated, of

treatment plans or supportive services.

The intensity of the need for coordination, and the amount of time,

energy and skill required, varies with the complexity of the individual's

situation. For the child or pregnant woman with complicated problems. a

primary care unit must act asor provide fora case manager. For less

complex situations, the need is for a greatly heightened awareness, and the

willingness and capability to act on such awareness, of the fact that each

child's and pregnant woman's health is determined by factors that extend

well beyond the health system. The partnership that our concept of the primary care unit implies

among physicians, nurses, dentists, social workers, nutritionists, psychologists, and other health, education and social service professionals, and

community workers: can be achieved when all of them work together in

one building and for a single institutidn, but that is not the only way. A

pediatrician, nurse practitioner, and office secretary can together create a

network that reaches far beyond their office; theirs becomes a primary

care-unit without walls when they know how to mobilize the services their

patients need, be they home visitors, social services, diagnostic specialists,

or mental health consultation. They join with other professionals and

advocates in efforts to establish the services that are missing. The primary

care unit, regardless of size or composition, should have connections to

the schools and social agencies that for some children can be as important

as the connection between the primary care unit and the hospital.

Continuity of Care

Primary care units should encourage a strong relationship, over time,

between the patient and family and a single practitioner or small group of

227
practitioners, who can orchestrate all the disparate parts of the care

needed by a patient or family. The impoqance of providing continuous

and comprehensive primary care has been underlined by the American

Academy of Pediatrics and others. The 'Panel joins with the Academy in

ackrocating that every child at birth and every pregnant woman shout

have a source of continuing care (sometimes referred to as a "medicai

home") which either offers directly or coordinates all necessary primary

care, serving as a reliable point of reference for families in maintaining

health and coping with health-related problems. Continuity is, of course, closely related to comprehensiveness, accessibility. and responsiveness. Inaccessibility of a practitioner encourages

patients to use emergency rooms or other providers of services, destroying

continuity. Referral of patients to others for services that should be within

the scope of the primary care unit promotes discontinuous and fragmented care. Failure of a primary care practitioner to seek results from referral

sources and to incorporate this information into the patient's record, or

fillure to accommodate and adapt to the patient's preferences also

-destroys continuity. To ensure continuity, primary care units should actively remind and

help patients to return for followup visits, attempt to determine reasons

for missed appointments or lack of adherence or followup, and maintain

unitary and complete patient records which include results of,referrals to

and consultations with other sources of care.

The patient's record can be an instrument to achieve continuity of care.

Historical data, progress notes and information from referrals, laboratories, emergency rooms and other agencies can be maintained in the

record. Consideration should be given to a problem-oriented focus. The

_parents should be familiar with the content of the record and may

maintain a summary for family use. If parents transport the record, or a

component of it, e.g., emergency room record, from provider to provider,

two essential functions are performed: parents are informed, and

information is conveyed safely and rapidly.

Appropriate Personnel Arrangements

Primary care units should establish pr..:ctice patterns involving collaboration among various health professionals which make possible the

effective delivery of needed primary care services at rcasonable cost. It is

increasingly difficult for a single practitioner to master in depth all the

fields of knowledge and the full range of skills that bear upon the physical

and mental health of the patients they see. Practice patterns should

encourage primary care practitioners to wct-k --tosely with other personnel

whose talents and expertise complement their own. Primary care units

which are organized to provide for substantial collaboration among

various types of health professionals can provide better and more costeffective care.

228 2
11.

Accountability

Primary care units should review regularly both the process and

outcomes of care to provide information which is useful in quality

improvement. While the Panel recognizes that periodic quality reviews may be an expensive process for some smaller primary care units to set up, we are encouraged by the fact that considerable work is currently under way by professional organizations and others to dvelop better and

simpler methods for internal quality review that will make this a realistic objective for all kinds of provider arrangements in the years ahead. Internal reviews should be designed and conducted to provide information useful in quality improvement undertaken internally by the provider unit, by funding sources, by the State health authority, or by users of care

and their representatives.

Consumer Participation

Primary care units should establish a systematic connection with users of care and other categories of consumer representatives to help assure

that their services are responsive to the needs of those they serve, and that the program receives broad community support. Most private practition- ers believe that their ability to attract and keep patients is the best

indication of whether they are responding to the needs of patients and

their families. Any more structured involvement of consumers is difficult

to achieve in a private practice setting. In organized care settings, on the other hand, systematic involvement of

the users of care and their representatives is both possible and desirable. It is particularly important in those primary care units where there is

substantial social or cultural distance between the target population and

those who are providing services: Programs successful in reaching a high proportion of their target population with primary care tel;:i in some way

to have established significant roots in the community. Such t..cirinections

take many forms, including partnership ar7angements in which responsibP:ty for the program is genuinely shared between providers and users of services, consumer advisory bodies, active collaboration with existing

consumer organizations, and training and employment of community

residents as paraprofessional employees of the health program. Consumers of health care can contribute much to how programs they

use should be designed and should operate. The needs, wants, and

judgments of consumers must be considered very carefully in designing

and operating health programs Consumers serving on advisory or governing committees and boards for

Community Health Centers, Health Service Agencies, health departments,

or hospitals should be provided a comprehensive orientation in existing

services and health delivery systems in the community, including the

interrelationship among various institutions and programs; and in how

4 229
standards are set, how new services are developed, how audits are

conducted, and how budgets are prepared.

Adequate funds should be allocated for training interested and involved

consumer representatives so they may be effective participants on boards,

committees, and councils. Governing bodies and advisory councils may

also include other consumer representatives with special expertise in

community affairs, local government, finance and banking, legal affairs,

trade unions, voluntary health agencies, and public and private social

service agencies_ Such individuals can be extremely helpful in creating

programmatic links with other parts of the community, and in making

clear to the broader community its stake in the health program.

Partnership with Parents

An awareness ofthe central role of the family in all aspects of

maintaining child health must permeate the activities and organization of

primary care units. Health professionals have many opportunities to

support families in their efforts to rear strong, healthy, and resilient

children_ Both individual providers and organized health programs and institutions can respond to family needs in ways that support or undermine

family functioning and a sense of parental competence, and that

encourage or discourage parental efforts to become effective collaborators

with health professionals in assessing and maintaining their children's

health, as well as caring for them when they are ill.

Six .re parents are the ultimate source of ongoing care and responsibility

for their children, it is essential that they be treated with the respect and

sensitivity which will enhance and support their key role. Time, a proper

setting, caring to ask and the skills to listen, must be integral parts of

health services. Most studies support the conclusion that:

The parents _ know their child far better than those trying to help

care for him Listening to parents, carefully noting their observations, putting thein at ease, and hearing out their worries even if they

appear unrelated can help to provide them with the emotional

resources needed to help their child- Impatience or misunderstanding with parents can impede their inclusion in the therapeutic

process, particularly because parents will continue to have caring

responsibility for the child after his illness-7-a point easily overlooked during the time of acute intervention (7).

The Panel believes that all providers of primary care to children and

pregnant women should seek to incorporate most of these attributes into

their delivery arrangements, and that families whose children have special

needs for a broad range of health and related services may find it

preferable to obtain their care from a primary care unit which has

incorporated most or all ofthese characteristics. Not all providers will be

able to, or will wish to, incorporate these attributes to the same degree.

Their salience, in ourjudgment, varies directly with the proportion of the

target population which is at high socioeconomic or health risk, and with

230
the scope of health needs with which the particular provider is called upon

to deal_ Public officials, adniinistrators, and health planners should all become

aware of these attributes, so that they may support policies which will help

providers to incorporate them. There should be special efforts to make

parents and other consumers aware of these attributes, to assist them in

judging what kind of primary care settings are most likely to meet their

needs_ Purchasers of health insurance, including management and labor,

should take cognizance of these attributes and the influence of third-party

payments in supporting desirable provider arrangementsSTRENGTHENING EXISTING PROVIDER

ARRANGE MENTS

In varying degrees, existing primary care arrangements already have

many of the -attributes the Panel has identified as important. We discuss below some of the specific steps that should be taken so that, over the

coming decade, more of these characteristics can be incorporated in

individual and small group office-based practices, hospital outpatient departments, comprehensive health centers, HMO's, health department

clinics, and school and pre-school health services.

Individual Practitioners and Small Group Practices

A very high proportion of children's health care and prenatal care

approximately 76 percent of all chillk.; health visits and 81 percent of all prenatal visits (8, 9) is provided by pediatricians, obstetricians, and

family and general practitioners in individual practice or small group

practice. Pediatricians and obstetricians in private office-based practice

tend to cluster in more urban and more affluent areas than family

practitioners, who are more likely tc live in small towns or rural areas (I).

The solo practitioner usually works with a small office staff; group practice usually consists of three or more physicians formally joined

together to provide medical care. This latter form of practice has been

growing among pediatricians over the past two decades, and will probably

continue to do so. (See chapter- 12.) Large numbers of fanulies and individuals have found this mode of

practice offers the most personalized, complete, continuous, and satisfactory way of obtaining medical care. The Panel believes that, although

individual and small group practice have been enormously successful over

the years, these forms of practice can be considerably strengthened in two

major respects_ They can become more effective in their efforts to help

families to prevent disease and promote and maintain health, and they can

be equipped to become a better gateway to a broad range of services

which their patients may need, but which they cannot offer directly. It

would be a great advantage to them and their patients if they could more

readily mobilize the help of others including social workers, psychologists,

231
speech and hearing therapists, physical and occupational therapists,

visiting nurses, and mental health centers. We believe that the broad spectrum of health needs of children and

pregnant women, and the attributes of delivery arrangements most likely

to meet these needs, implies that for the future, groups of health

professionals, especially when nurse practitioners and other health

personnel are included, are preferable to physicians working alone, and

that public policy should be designed to promote a closer relationship

between office-based practitioners and other sources of care and service.

Currently, referral and consulation patterns of private practitioners tend

to include medic-al specialists, but not other health and health-related

professionals. The Panel recommends 'that, over the long term, individual primary

care physicians be encouraged to join in practice with other physicians

and with other health professionals. Dentists, too, should be encouraged

to join with other dental professionals in practice. Simultaneously, better

links must be developed between physicians -and dentists in office-based practice, and other sources of care, services, and support in the

comm unity. The Panel has been particularly impressed with the unexplored

potential of the last objective to achieve great gains in child health. Some

of the attributes of the primary care unit which we have described are

difficult for an individual practitioner or small office-based group to

incorporate directly, but linkages can be forged whicd, .provide a

capacity for outreach, coordination and accountability. For example, the

local public health agency may provide the local physicians with a parttime public health nurse or social worker; some health departments

provide office space in exchange for the physician's participation in the

department's health service programs. Many visiting nurse ,agencies have

close and active working relationships with physicians in private practice.

In some rural areas, the agricultural extension agent has been enlisted to

provide followup services,- and some welfare departments work closely

and effectively with private practitioners to make sure that referrals are

completed and to help coordinate care. Services such as food supplements

and nutrition education, crisis counseling, classes in preparation for

childbirth or parenting, alcohol and drug abuse programs are often

offered by health department, health centers, and hospitals, and needed

by some of the patients of private practitioners. If there were better

linkages between these programs and institutions and the private

practitioner, the latter's capacity to deal with a broad range of problems

would be greatly enhanced. Therefore, both public and private funds

should be made available for demonstrations of better ways of making

health-related services accessible to physicians and dentists in office-based

practice. and of encouraging them to make use of such services.

Hospital Outpatient Departments

Hospital outpatient departments are of great significance for the health

of children and pregnant women for two main reasons: hospital clinics are

232
the source of ambulatory health services for many mothers and children,

and they are typically the sitting in which physicians receive most of their

training in ambulatory care. Nationally, about 14 ,L,ercent of all child health visits are to hospital

clinics or emergency rooms; among low-income children over one-fourth

of all ambulatory care is rendered through the hospital outpatient

department or emergency room (6). Many families use hospitals as their regular source of care. In some

areas of American cities there are no other options, particularly for

pediatric care. For many families there are no other options they can

affordmost hospitals accept Medicaid patients, and many hospitals

accept patients who have no source of payment But often, hospitals are

chosen as the preferred provider. Some families form an abiding

attachment to the place where their child was born, and continue to return

there for care. For others, the decision to use the hospital outpatient

department (OPD) or emergency room (ER) may be based on the quality

of medical personnel as compared to those in other health care settings,

their perception of the severity of a child's illness, hours at which care can

be sought or is required, and the expense and inconvenience they are

likely to incur in seeking care elsewhere.

Many hospital outpatient departments offer extremely high quality

ambulatory pediatric and prenatal services. However, care in this setting is

often episodic, andwith some notable exceptionsfrequently marked

by anonymity, fragmentation, crisis orientation, discontinuity and high

cos"- These defects, which undermine the effectiveness of much hospitalLased ambulatory care for the patient, also aimininte the quality of training

received by pediatricians, obstetricians, family practitioners and nurse

practitioners, for it is in the hospital outpatient setting that most of these

practitioners, and other health-related professionals such as social workers, receive the bulk of their ,training in ambulatory care_ Many current

problems are thus perpetuated. There arc many obstacles that keep hospitals from providing more

accessible; continuing and comprehensive ambulatory care to children

and pregnant women. In some areas, physicians in private practice who

are on the hospital's attending staff may view high quality hospital - based

primary care programs as a compititive threat_ But the most formidable

problems are those that stem from cost considerations and prevailing

arrangements for financing hospital outpatient care: Costs of providing services in a hospital setting are high. Costs of

space, utilities, maintenance of medical records, etc., are substantially greater in a hospital than in a doctor's office. Some experts

estimate these factors cause a typical office visit in a hospital to

cost S20 more than in a nonhospital setting. The vast majority of organized ambulatory care provided in

hospitals is performed in teaching hospitals where costs are

especially high because of the added costs of training. Although

private foundations and Federal and State Governments have

made grants to some hospitals to offset training costs in primary

2

233
care, many hospitals do not receive such subsidies; even many

that do find them too limited.

The cost differential for visits to an OPD is exacerbated by the

way hospitals distribute costs. The costs (but not the revenues) are distributed disproportionately to the OPD, in part because the

biggest single payer for hospital care, Medicare, requires an

averaging approach, whereby most hospitals choose to attribute

total costs to various parts of the hospita' based on such factors as

how much space the program occupies. And although most clinic

spaces are utilized only 8 hours a day, allocation of their costs for housekeeping and maintenance are based upon 24-hour-a-day

utilization_ While present arrangements make costs high, funds to cover these

costs are especially limited_ Primary care providers are at fee disadvantage compared to specialists, who are more apt to recoup money 'ay performing procedures which are covered and adequately reimbursed by insurers. Also, much less of the primary

care providers' overhead, staff, and similar expenses can be borne

by other hospital sources- Medicaid's fixed fees for outpatient clinic visits are typically lower than the "usual, reasonable, and

customary charges," and even though this same fee may be paid to out-of-hospital providers, it is more burdensome to the h ispital- based provider whose costs are higher_ In the case of private

insurance, outpatient care is frequently not covered_ Public hospitals frequently have especially severe problems_ In

areas with relatively generous Medicaid benefits and a large number of hospitals, there may actually be competition for Medicaid-eligible patients, as some private voluntary hospitals "skim" of Medicaid-eligible patients, leaving other community hospitals and the public hospitals to care for the medically

indigent and illegal immigrants. . To provide children and pregnant women with ambulatory services

characterized by continuity, comprehensiveness, and accessibilityresulting in not only better and more cost-effective care, but also significantly

itaproved professional traininghospitals which provide a substantial amount of outpatient care to children and pregnant women must make

fundamental changes in their orgaini7_ntiona1 arrangements_ Many hospitals have already succeeded in-making the kinds of changes

we view as necessary. These include the following: Hospitals should establish primary care centers of various kinds

with the help of both public and private funds. These primary care centers can incorporate many functions. previously performed in

specialized clinics but with a special emphasis on making services accessible, comprehensive, continuing, and. responsive to the needs of the families served- Especially wLen there is a stable

source of funding, this can be done by utiliring staff physicians, nurse practitioners, and other health related personnel, and

establishing strong links to the community_ In some hospital OPD's continuity of care has been promoted by using a team

approach in which regular faculty remain with a group of patients

234
and only the trainees change. Also, residents and families or patients can be matched up and stay together for the full course of

the resident's training in order to Provide continuity to both

patient and trainee- Fortber development of hospital-based group practice should also

be enccniraged because greater continuity and more Personal care

is possible in these settings than in traditional OPD's. However,

3nost h°sPital-hased group practice arrangements tend to offer a

Ittarrower range of services than the hospital-based primary care

eenters, and often find it more difficult to provide the full range or health-related services which are so important to children with

special needs, or who are at high risk for either social or medical

reasons- tiepending upon circumstances, some hospitals should assume

zesponsibility For the creation and 013F:ration of decentralized pritnary care units in nearby or out lying neighborhoods, with

appropriate incentives- for their use. In many areas hospitals provide the best organizational locus for one or more peripheral aeighborhood primary care censers, which may be needed to

provide the target population with services that are both geo- eraphically and psychologically accessible416 ZIOSPital outpatient departments when they are not the regular

.motrree of can; and hospital emergency rooms, should assure

systematic transmittal of medical information to the patient's

jporonazy care provider, and establish mechanisms for encouragin* g patients and their families without a Mgular source or primary

care W select artd use one zinkageS between hospital OPD's and cornmunity services must

be improved to enable both to function more effectively_ First, hospital OPD's must be more available to community primary

care providers for consultation and specialized service backup. All ttiedical schools, schools of nursing and teaching hOSPitals with pediatric, family medicine, and obstetric departments, including

those on which large numbers of families do not depend for their primary ambulatory care, should be encouraged to establish more effective working relationships with private practitioners, free_

standing child and community health centers, public health

dies, school health programs, day care centers, and correctional

and other residential institutions. They should offer to all of these

other sources of care the kinds of collaboration and backup

services they most need, including medical consultation, secondary

11,1 tertiary care, and various psychosocia.l- services- In addition,

hospital Primary care units and group practices should be able to

mobil ize the services of other agencies, including home health

agencies, community mental health centers, public health

dents, family Planning centers and social agencies on

behalfof the families they serve.

-ro provide an optimal training setting, the hospital OPD must be

in such a way that health professionals of all kinds, and

,4t all stages of their training, can learn to provide continuing,

235 .
personalized care, and to collaborate with parents and with other

health- professionals, including other physicians, nurses, social

workers, psychologists, nutritionists, and educators. Especially,

there must be opportunities to acquire skills in caring for children

with developniental disabilities, chronic illness, and handicapping

conditions, as well as slciiis in counseling, anticipatory guidance,

developmental appraisal, coordination of services, planning comprehensive care, and mobilizing available community resources

(10). It is extremely difficult for hospital OPD's to change in the ways we

recommend unless changes are made in financing arrangements of third

party payers, grant programs, and hospitals themselves_ Most recent

modifications of OPD's have been made using private or Federal demonstration grants If more hospitals are to provide more effective

ambulatory services to children and pregnant women, and do so over the

long run, the following steps must be taken:

The costs of teaching in ambulatory settings must be financed

through subsidies for this purpose, or by increased payments from

third party payers. These costs include the reduced productivity of health professionals engaged in teaching, and the support of

special services and personnel that can demonstrate and teach the

skills required to assess patient needs and to counsel patients

without excessive utilization oftechnological procedures. New methods of paying for primary care rendered by hospitals

should be developed, using public and private demonstration

funds. Among payment mech ani sms which should be considered

are capitation payments to primary care units which are not full

HMO's; methods whereby savings which accrue from reduced use

of inpatient care as a result of more effective outpatient care can

be identified and treated in ways that provide incentives toward

making ambulatory care more accessible and more appropriate.

Grants under Section 328 of the Public Health Service Act should

be expanded to support more comprehensive care centers in

ba.spital settings. Tilk. management and efficienty of hospital-based ambulatory

care must be improved, possibly through establishment of separate cost centers which would make the various components of the

program more accountable. Further studies and demonstrations

are needed to define more clearly how separate cost centers and

similar mechanisms might be employed to provide ambulatory

health care more efficiently under hospital auspices. Methbds of defining and allocating costs within hospitals must be

modified. This could probably be brought about most expeditiously through changing the Medicare rules which result in attribution

of unreasonable amounts of expenses to outpatient clinics_

Other financing changes recommended elsewhere in this report

(see chapter 9) will make it easier to implement our proposed

modifications in hospital OPD's. These changes include raising

payment levels for primary care, expanding third-party coverage, and providing a higher priority for outpatient care. In addition, as

236 2 A .1,
recommended in chapter 8, special provisions must be made to

reimburse hospitals for care to the poor with no sources of thirdparty payments, including refugees and illegal immigrants.

Publicly Financed Comprehensive Care Centers

Publicly financed or subsidized comprehensive care settings include

Community Health Centers (CHC's), Migrant Health Centers, Children

and Youth projects (C&Y), Maternity and Infant Care projects (MIC),

some health department programs, and rural primary care centers. These

programs are intended to provide a full range of primary health care

services, are linked to secondary and tertiary care, and usually also

provide social services and some support services. They employ physicians, certified nurse midwives, and nurse practitioners, and most do so

very effectively. Sometimes they provide environmental interventions, and

many have a commitment to community participation, outreach, and

other mechanisms for minimizing access barriers.

Many of these programs have been highly effective in providing previously unreached populations with needed health services, with

subsequent decreases in hospitalization rates, infant mortality rates, and

the incidence of prevcntabl,- diseases in the areas served. In addition,

while not all programs e been of equally high quality and cost

effectiveness, there is ample evidence that quality -and cost compare very

favorably with those of other provider arrangements, many of which offer

a far narrower range of services. To cite but three examples: A recent study showed that in one community total Medicaid

payments, including hospitalization., were as much as 60 percent

more for persons not getting their care from community health

centers than for users of CHC- 's. Cost differences in other

communities were smaller but still significant (11).

Within 2 years after a neighborhood health center was established

in a Rochester location which had previously beer. the site of a

clinic with limited services,- there was a 38-percent decrease in

emergency room visits by center area children.. During the same

period, pediatric visits to the emergency room from other areas

increased by 29 percent (12). A new study comparing outcomes for pregnant women in a maternity and infant care project in Cleveland with those of a

similar group of women getting care at the same hospital, but

without the supplementary services (which included more patient

education, nutrition counseling, social service assessment and

intervention, special' services for adolescents, and missed

appointment follow-up), shows women receiving care through the maternity and infant care project experienced 60 percent less

perinatal mortality (13). Despite their positive track record, comprehensive care centers still

serve only a fraction of eligible children and parents in the United

Statesabout 4 million children in fiscal year 1981although we believe

they should serve far more. They remain a model for service delivery with

237

P
great unfilled potential to deliver high- quality care in the Nation's areas of

provider scarcity and high health needs.

There arc two major types of federally supported comprehensive care

centers.

Community and Migrant Health Centers

Community Health Centers were first funded by the Office of

Economic Opportunity in 1966. A similar Public Health Service (PHS)

program was started in 1968, and in 1973 all program authority was given

to the PHS_ Roughly 150 early centers were characterized by project

grants to community groups with consumer governing boards, employ-

\ ment of community residents, fairly large size, significant capital invest- \ ment, 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-19747s.

First, new centers known as Urban and Rural Health Initiatives were

retricted to a more narrow medical approach to care, and health-related

services were reduced in existing centers. Program administrators and

benet\eiaries criticized the narrower range of services and were successful

in obtaining a 1978 legislative requirement that funding for most of the

services `be restored.. Second, new centers tended to be smaller and less

capital-intensive, a modification received positively insofar as it increased

flexibility to\rneet needs of small communities.

Between 1977 and 1981, funding increased more than 60 percent and

capac -ty doubled. In fiscal year 1981 roughly 1,000 Community and

Migra. t Health\centers will serve a total of nearly 6 million persons-3

million childrenat a grant cost of 5398 million_ Nearly all current efforts

are in high poverty underserved areas.

Centers are still funded through project grants and nearly all have

consumer boards. The centers are required to provide most primary health

care, transportation and some support services. Home health, dental,

bilingual and outreach services and health-nutrition education must be

provided on demonstration of need; 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 a program of Maternal and Child

Health (MCH) formula grants to States. These programs were originally

funded through direct project grants by the HEW Children's Bureau

under Title V. Children and Youth Projects (C&Y) provided children with

medical, nursing,,' nutrition, social work, and a broad range of support

services. Maternity I'd Infant Care (MIC) project grants, begun:n. 1963,

focused on high-risk pregnant women and infants, including their needs

for primary care and related services. Both types often had consumer

advisory, but not consumer governing boards.

Starting in 1974, funds for C8cY and MIC projects were folded into the

State formula grants of the maternal and child health program. States

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2
were required at least t_o maintain pre-1974 levels of service, States without' at least one MIC and C&Y project were required to start one, and it was hoped that they would further replicate these projects in areas that still

lacked access to care.

While some States expanded their support of these programs, most States chose to continue their other maternal and child health activities

rather than expand projects which some regarded as federally imposed, which were expensive when compared to less comprehensive and more

traditional public health services targeted on similar groups, and which

required greatek adherence to Federal standards. In fiscal year 1981, 88 MIC projects with $62 million in Federal grant funds will serve abdut 450,000 mothers and 300,000 infants: Ninety-six C&Y projects will serve

about 600,000 individuals with $65 million in grant funds.

Manpower Support

An integral part of Federal support for primary care in underserved

areas is the National Health Service Corps (NHSC), which deploys health professionals in underserved areas, with or without a prior scholarship obligation. When the Corps was initia ted in fiscal year 1971, most physiciaus were placed in a solo practice setting, many in areas with the potential for self-sufficiency. This occasionally led to conflict with

physicians in private practice and often left high poverty areas unserved. The current emphasis is on placing such personnel into comprehensive care units, to better meet the multiple problems of high poverty areas. However, public health departments and public hospitals are currently not eligible for a NHSC placement unless they reimburse the Federid Government for the cost of that individual's salary. In 1981 the NHSC will deploy 24500 primary care practitioners at a total field cost of $87 million. About 45 percent will be placed in Community

and Migrant Health Centers. The remainder will serve in 270 independent practice sites which comprise a slightly different model of health care delivery. Health-related preventive, support and psychosocial services are not as likely to be provided, and most independent sites are located

outside of high poverty underserved areas.

Strategies for Improvement

The principal limitation on all of these comprehenkve care cemters has been their high dependence on fluctuating and unpredictable funding. Various efforts have been made to reduce this dependence on Federal grant support, including broadening eligibility to include the non-poor with sliding fee arrangements, offering care to those outside original catchment areas, attempting to enlarge the component of care reimbursa- ble by Medicaid, searching for other public grant monies, and conversion

to an HMO practice modeL These efforts have resulted in significant diversification of funding for most 'centers, although core support from

Federal grants remains an essential budget component for most. (Some

comprehensive care center., including some neighborhood clinics oper239
ated jointly by hospitals and local health departments, are funded,

exclusively by Stares and counties.) Fiscal pressures have resulted in many centers, curtailing se:prices for

which third-party reimbursement was not readily available, even when

these services were considered particularly important and effective.

Recent data suggest, for example, that among those centers with

increasing financial problems, outreach and preventive services tend to

receive decreased emphasis (l4). - . Another problem surrounding thfse programs has been the development of an appropriate relationship between the comprehensive health

centers and the prticess of State and local plArming, resource allocation

and standard setting for maternal and child health care. Historically the

centers have relied on a direct relationship with Fekicial authorities for

their initiation and continuing support, substantially bypassing State and

local government. This was logical at the outset because the centers were

created in large measure to meet needs which State authorities had

consistently failed to address. There remains an understandable anxiety

among the directors of many centers that State involvement or control

might undermine their effective operation and inhibit the development of

additional centers. But all would agree that lack of coordination in

(-----selecting sites and relating to parallel efforts under State and local

sponsorship has at times led to inefficiencies in -the use of scarce primary

care resources_ (Our recommendations for resolving this dilemma appear

in chapter 10.) The design of most federally supported comprehensive care arrangements is highly consistent with the primary care units the Panel supports;

they are likely to have the characteristics we have identified as effective. In

some areas they continue to be the only viable mechanism for delivering

cost-effective care of high quality to poor mothers and children. The Panel

strongly recommends that Federal and State Governments continue to

regard comprehensive care programssuch as the Community and Migrant

Health Centers, Maternal and Infant Care Centers, and Children and

Youth Centerstogether with deployment of National Health Service

Corps personnelas the best instruments for increasing access to and

availability of appropriate primary care services fir children and pregnant

women in underserved areas. This means that:

The Congress should increase its grant support, on as predictable

a basis as possible, to allow existing comprehensive care centers to

serve more clients and to permit the addition of comprehensive

care centers to new sites as needed;

The States should similarly seek to support and expand MIC and

C8cY projects_ When the degre, support which MIC and C&Y

centers receive under existing a .stgements is not commensurate

with their potential for improving maternal and child health in

underserved areas Federal authorities should take the initiative to

stimulate their expansion and continued successful operation;

The Department of Health and Human Services should further

develop and facilitate support of comprehensive care centers by

providing technical assistance, revising regulations, and requesting

legislative changes if necessary, to make it easier for the centers to

240
draw on and coordinate with various other sources of Federal and

State funds, including ,Medica.A., %Filly planning, preventive health services,' Head Start, Title XX, and mental health services. Also, in some communities MIC and CitY projects might best be colocated, or provided at the same site as a Community Health Center; Federal support for the development of nurse practitioner and nurse midwife clinics in sparsely populated areas should be

increased.

Health Maintenance Organizations (HMO's)

At present, approximately 5 percent of the Nation's children and

pregnant women are cared for by H MO's (prepaid group practices and

5 independent practice associations). Since HMO enrollment is primarily

through employed groups, families who belong to them are predominantly middle and upper middle class, although a. few urban HMO's have a

significant lower income clientele. HMO's, which originally were a West and East Coast phenomenon, are now developing throughout the United States. In 1971, there were 39 plans serving 33 million.people (15). By

June, 1980 there were 234 serving an estimated 9.03 million persons (16). In another 10 years HMO's are expected to serve 20 million Americans_ HMO's have the potential to do a more effective job than they now do

in serving women in the reproductive age group, and children. They

provide cost and quality controls and the opportunity for collaboration

among a variety of health workers, a combination that is difficult to find

outside of organized settings. Financing is not generally pegged to the

specific services provided, allowing greater latitude for the provision of a broad array of appropriate services by a variety of personnel. Financial incentives operate, at least in principle, to encourage the provision of preventive services, primary care and health education and to reduce unnecessary care. For example; the Puget Sound HMO estimated that by

integrating a stepped -up prevention program focused on high risk children

into its comprehensive care program, it was able to significantly reduce

the need for other services, with resulting savings of S100,000 per year

(17). The two best safeguards 'that consumers have to protect them from

possibisunderutilization of services from HMO's are the potential of the HMO to undertake (1) rigorous quality reviews, since there is an enrolled

population and relatively easy access to compreh'ensive records, and (2) a

systematic program to keep consumers well informed so they can monitor

their own and their children's care_ Of particular importance to children and their parents is the fact that

the HMO places no limits on primary care visits, that psychosocial services and counseling are offered in, many HMO's through health

education classes and health promotion activities, and that most HMO's

systematically and actively encourage well-child, examinations and pro- mote immunizations.

241

", L.1. i?
The Panel urges that all HMO's review and expand their ability to

provide all needed services to children and pregnant women as part of

their regular benefit packzge. Federal policies toward HMO's should

promote such activities. Financial pressures and policies governing eligibility operate to inhibit

enrollment of low-income populations in HMO's. Current Federal efforts

to develop-HMO's a means of constraining health costs and to pressure

HMO's to operate without government subsidies have had the indirect

effect of discour,..?jng them from attempting to serve larger numbers of the

poor. The fluctuating eligibility status of many poor families for third

party reimbursenient adds another complication for a program which puts

high priority on continuity of care, and where projected savings' may be

associated with long term membership. Categorical funding aimed at

specific target populations and at provision of certain types of care (i.e.,

outpatient care but not inpatient care) is at variance with what the HMO

does best, providing all family members with comprehensive coverage for

all health services. At present, only about 1 percent of Medicaid

beneficiaries are enrolled in HMO's.

The Panel recognizes that for the near future in most areas of the

country, HMO's will not be the dominant mode of service delivery. But

the promise of this service delivery mode at its best is substantial. Federal

authorities .should take three steps to make it more attractive, few HMO's

to enroll low -income mothers and children:

Grant funds should be provided as an incentive or partial subsidy

for those HMO's enrolling substantial numbers of low-income

children and parentg. Medicaid regulations regarding scope of benefits should be

waived, as necessary, to enable HMO's enrolling low-income.

families to offer the same benefit package to these families as to

other subscribers. Further of brts should he made to develop realistic models of

prospective reimbursement to HMO's for the care of groups of

low-income children and families.

Where prepaid systeins for providing cost effective comprehensive care

to mothers and children are already in operation, such systems should be

encouraged to add low-income families. The use of grant funds and the

waiver of cr-rtain Medicaid regulations (as permitted under existing law)

woulc". rii...;ce possible Federal subsidy for low-income persons who rr,

need, certain additional services to help them make optimal use of the

HMO, and would encourage the use of prepaid capitation payments for

both inpatient and outpatient care. For low-income children and families

enrolled in HMO's it should be required that if a family leaves he

Medicaid rolls, the State Medicaid program reports such loss of eligibility

promptly and extends HMO eligibility for at least 6 months to ensure

continuity of r..:are. HMO-Medicaid demonstrations, which would waive State restrictions

on care and develop reporting requirements germane to the HMO type of

operation, are ar. 1...znt form of health care experiment. Such

programs should allow low-:.ncome children and their parents to receive

the same benefit package and be cared for in the same way as other HMO

242
clients; participant families should receive the assurance that no benefits available to other Medicaid families will be denied to them (e.g., dental benefits). Where, HMO's have developed particularly valuable maternal and child health programs (i.e., preventive services, health promotion, psychosocial and *educational counseling) such programs should be

studied as demonstrations of what might be encouraged in other HMO's With similar populations and settings. Federal effort should concentrate not only on extending access but on generalizing successful elements of some HMO's to other HMO's.

Health Department Clinics

It is ..tirnated that roughly 2,000 State, county and city health

departments in the United States are involved in the delivery of direct health services to mothers and children. Most do not offer comprehensive care, but rather pre- and postnatal care, well-child care,' immunization

services, school health exams, and other primary preventive services. During the 1960's and 1970's, however, some large health departments began to assume responsibii:ty for establishing and operating comprehen- sive health centers. A signific-znt number of such centers are now in

operation, serving approximately 0.5 million children. A recent survey

indicates that over half the local health departments in cities with more

than 100,000 population now sponsor at least one facility offering

pediatric primary health care. Approximately one-quarter of these departments operawzore than five such facilities (1 8). Important regional differences prevail, with health departments in the Southeast, Pacific, and Mountain areas more involved in medical care delivery than those elsewhere. Funds from Title V, Section 330 of the Public Health Service Act, and more recently EPSDT, have provided

considerable Federal support for p entive care in health department clinics. The widespread existence of health department facilities and

personnel hay made them a natural base in the eyes of many for further development of maternal and child_ health services, even though both their budgets and their service's usually are quite limited at present. In

_underserved areas, the health department may be the most realistic

institutional base for further development of primary care services. Trend data suggest that maternal and child use of public health clinics has increased over the past decade in response to the .;-spanded

availability of funds for services, in large measure because of the EPSDT

program_ Twenty-three States rely exclusively on health department clinics to carry out the screening portion of EPSDT; only eight States

implement EPSDT 1.-e:thout any participation of health department clinics. Nationwide, cne in five new mothers in 1976 received some maternity nursing services from health department personnel, and more than 17

percent of all infants received care in health department well-child clinics_ Comparable use rates have been experienced in health department family planning clinics:- Thus health department clinics remain a significant component of the mate%-tiali and child health care delivery system, and have grown in their relative importance over the past 20 years (18, 19).

243
Health department funding sources vary. City or county funds are the

most common source of support. along with limited assistance from State

and Federal Title V. and Title XIX and Public Health Service (Section

314(d)) monies. The larger rural health departments found mostly in the

Southeast are heavily State supported while urban health departments,

especially in New England, rely primarily on local support (19). Those

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 those funded from their own

sources (e.g., Boston). Many rural health departments offer somewhat less

comprehensive primary care to a large, sparsely populate0 area, sometimes through satellite or mobile clinics.

Health departments also vary in strength and effectiveness. In several

States, the State health department is characterized by strong leadership

and strong support from the State legislature. In Michigan and several

other States, the health department's maternal and child health unit

controls the EPSDT, Title V, and WIC accounts, enabling the same

people who administer the programs to make decisions about the use of

monies in these programs. The department also gets a prospective EPSDT

budget from the State legislature, based on anticipated Medicaid

reimbursements for the year. EPSDT money therefore can be used in a

purchase-of-services mode, much like a formula grant.

In Alabama, the health department received a modest increase in its

maternal and child health funding over the last 3 years, and has upgraded

and extended its maternal and child health services. During this same

period, the statewide infant mortality rate fell from 20.0 to 14.3 per 1,000

live births, while the racial differences in infant mortality declined by 75

percent (20). In Georgia all material and child health services are located in one

section of the State health department. In addition, there is a yearly

appropriation of approximately S8,830L000 in State monies to fund the

high risk prenatal care and other maternal and child health programs.

Because of this coordinated effort, Georgia has made significant strides in

the development of a regionalized system of perinatal care. In addition,

immunization levels currently exceed 90 percent, and the Supplemental

Food Program for Women, Infants and Children (WIC) has enrolled

62.000 mothers, infants and children in all counties of the State. All 159

counties offer child care through the local health department, and all but

15 also provide prenatal care. A network of genetic services has been

devised with Federal and State funds through a partnership between

medical and nursing schools, education, health departments, and private

practitioners (21). In cities such as Denver and Cincinnati, local health agencies have been

able to utilize a combination of Federal, State and local funds to create a

network of comprehensive care services with dramatic impact on the

health status of children and pregnant women. Weaker State and local health departments have not been similarly

successful in pulling together programs and funds. The General Account2'1.4
ins Office 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" (22). The main problems are limitations in. the nature of the programs, in

administrative capacity, and in funds. A fUrther complicating factor is that in some areas of the country, services have not been responsive to the needs of racial minorities. Likewise, in some communities health departments are dominated by the State or local medical society, which may oppose their assuming an

expanded role in the provision of a full range of primary care services. It should be noted, however, that many health departments have successfully overcome these adversities. A central strategic issue is whether to recommend that the promising developments of the recent past be reinforced. and health departments made the base for the further establishment of comprehensive primary

care units, or whether to place policy emphasis on other sponsors and sites of care.

It can be argued that because the health department's historic role has been to provide environmental and preventive health services, without any

clear min:late to provide comprehensive primary care services, it is

inappropriate to add new primary care services to existing health

department clinics. This line of reasoning emphasizes the fragmentary nature of traditional health department preventive care clinics, their

limited availability (e.g., services are often provided in only a few sites, sometimes on only 1 day or for a few hours each week), and the difficulty many health departnients have in attracting qualified personnel. On the other hand, health departments represent the only substantial existing

infrastructure on which to base care in many low-:income areas (almost 10 percent of departments report being the or.ly source of organized

ambulatory care in their district), comprehensive services sponsored by health departments have been delivered in some places during the past decade, and more health departments could be effective sources of comprehensive care in many low-income areas if strengthened and given

the needed resources.

Without additional public support, many State and local health

departments will continue to have a limited capacity to provide primary health care services. It also seems clear that because some Federal

initiatives have in effect circumvented State health departments by

directly funding local grantees, these departments are somewhat demoral- ized and in need of a clear definition of their appropriate role in the provision of primary care services. Health department emphasis on

primary care to mothers and children has in many areas been eroded by

demographic shifts requiring added attention to the needs of the elderly, and by the greater availability of funds for services to the elderly, especially through Medicare. The Panel recognizes that health departments have certain unique

functions and responsibilities_ (See chapter 10.) With regard to their role

in the delivery of primary care services, the Panel concludes that as with

245
other delivery arrangements, no single policy will suffice for all States and

localities.. In some areas, health departments will indeed offer the best

opportunities for making health services more accessible and available. In

those areas they should be fully utilized.

The Panel believes that in general, support for primary care units

organized and sponsored by qualified local and State health departments

will be more important during the next decade than in the past, especially

in central cities and rural areas. The need for comprehensive health

services from health departments can only increase in a period of relative

economic hardship. In many areas, no other provider is as likely to offer

care at moderate expense to the inner city poor, the medically indigent,

and additional populations who would otherwise seek care from hospitals,

often at considerably higher public costs.

We therefore recommend that priority be given by Federal, Stare and

local authorities to support of health department efforts to offer

comprehensive primary care, rather than individual components of

preventive' care. We also encourage State health departments and/or Title

V agencies to assist in identifying areas where comprehensive care centers

under health department sponsorship would be desirable, and to foster the

development of such settings to replace or extend more limited health

department clinics. Federal support of health department-sponsored comprehensive care to

children and pregnant women should be contingent on competence to

conduct such programs, and adequate provisions for consumer involvement in service planning. We believe that a major mechanism to assure

the adequacy of health department efforts in primary care is' the

establishment of new and specific national standards for health department maternal and child health programs and clinics. Efforts to establish

such standards were initiated under the auspices of the Department of

Health and Human Services, but lapsed for the lack of funding. We

believe the standard-setting process deserves r..w impetus in the immediate future. The standards should be broadly disseminated and should

provide the basis for Federal and State determinations about funding of

future health department programs.

We also believe that it is imperative that more bridges be built between

public health agencies and medical centers. New relationships must be

developed whereby health departments, medical and nursing schools and

teaching hospitals can work much more closely together. In some

instances, they may be able to consult with each other, and even monitor

each other's performance to the benefit of all institutions involved. Both

public and private funds should be made available to explore and

demonstrate bitter ways to remove some of the artificial barriers that

separate the worlds of "maternal and child health" in the public health

sector from the world of pediatrics, obstetrics, and family practice in the

medical education sector.

School Healtt. Services

In promoting wide access to comprehensive primary care for all

children, the role of school-based health programs is potentially of major

246
significance. The nation has 16,000 public school districts, and at any one

time approximately 99 percent of 6- to 15-year-olds and about 90 percent

of 16- and 17-year-olds are enrolled in the schools (23). One billion dollars

are spent annually, principally from local and State tax revenues, to

support a variety of functions categorized as "school heals' nis is not

much in terms of total school expenditures or total health expenditures,

but it is a large amount when compared to other public support for child

health services. There is a similarly significant commitment of health

personnel to school health functions: there are some 30,000 full-time

school nurses and almost one of every six pediatricians in the country has

accepted some form of responsibility for school health services (24).

The traditional role of school health programs has been limited by State

law and by custom to a rather narrow range of preventive and educational

services. Typically, school-based health personnel have performed routine

services such as checking immuniz'ation records, advising on the management of children who get sick or injured at school, performing physical

examinations for members of athletic .teams, and assuring a healthy and

safe school environment. Preventive care efforts have varied widely in

scope and quality. Because the priorities of school authorities have not

always coincided with those of health authorities, school programs have

generally been perceived as marginal in their effects on child health. In

some instances, valuable preventive care programs, such as dental hygiene

programs which once existed in some schools, have diminished in scope or

disappeared as a result of reduced tax support, lack of parent advocacy,

and insufficient backing from the public health and medical care

communities. Such programs have sometimes been perceived by health

professionals practicing in the community as competitive with their own

services, particularly when they go beyond case finding and referral.

The role of schools in child health is under active debate today. There

are those who advocate that schools limit their role to health education,

first aid, case finding and referral, and assuring a safe and healthy school

environment; others would like them to become sites and/or sponsors for

provision of a broad, possibly comprehensive, array of primary care

services. Arguments against expaading the role of schools as providers of

comprehensive primary healw care include the following: In many States the law continues to impose major limitations on

such programs. Certain problems are inherent in trying to establish priorities of

one service sector in the programs and facilities of another. The

school superintendent or principal may never accord health

services an appropriate priority. In a time of budget cutting,

school health services may be the first to go. To the extent the school hires health personnel and controls

operation of the program, linkages to the public and private health

care sectors may prove difficult to create and sustain, further

fragmenting services, making quality assurance more difficult, and

sometimes creating a dual system of care.

The schools are closed in the evening, on weekends, and in the

summer, ruling out some elements of service continuity.

247
Schools usually do not assume responsibility for children until

they are 5, which is later than desirable for many forms of

preventive intervention, including immunizations and developmental assessment. School-based services tend not to reach dropouts and other

school-age children who are not in school and may be in greatest

need of health services.

In communities where parents distrust the schools, school-based

health services carry the potential for undermining the role of

parents as primary care givers. Many of the health-related problems of adolescents involve

sensitive issues of confidentiality and consent which may be

difficult to handle in some schools.

Arguments which- support the more active role of schools in the

proirision of primary care include the following:

A very high percentage of children can be found in schools.

Increasingly, schools have space to house additional community

services. The schools embody the tradition of providing certain basic

services to all children, creating the possibility of universal access.

The merging of health s'::.rviCes with health education and

promotion, as would 1,1/41: possible in schools, may increase the

effectiveness of both.

Psychosocial and learning-related problems, which have assumed

increasing prominence in pediatric care, may be best handled in

the schools. This is especially true with the P.L. 94-142,

the Education for All Handicapped Children Act, which mandates comprehensive evaluation,and appropriate education placement for all children with disabilities..

The Nation has already made a _major commitment to school

health, which should not be allowed to operate in a fragmented

way outside the mainstream of health care.

The schools have routine contact with parents, leading to

economies of outreach. Significant numbers of parents work during the day and cannot readily supervise their children's daily health needs without

assistance from the schools. This issue is not destined to be resolved in ii 1 abstract, or at the

national level, detached from the realities of individual communities.

School-based primary care units, will prove a wise investment for some

communities but not for others. The role of the school in the ,ornmunity,

the availability of other health resources, and the nature of the connections which might be forged between school-based health services and

other sources of health services and clinical backup must all be taken into

account_ The Panel has studied several highly successful school-based primary

health care programs, but we still find it difficult to generalize about the precise characteristics of good programs_ exemplary programs such as

those in Hartford, Conn.; Cambridge, Mass.; the Posen-Robbins District

of Chicago; Galveston, Tex.; Jackson, Miss.; and St Paul, Minn. are

248
unique products of local realities, individual entrepreneurship, and close

cooperation of the medical sector, making it hard to know which elements

are replicable in other sites.

Cambridge, Mass. was able to convert its disjointed and isolated child

health services into a program of comprehensive care available to all

children through schools and neighborhood centers, with pediatric nurse

practitioners as primary care providers. The entire effort was funded by

realloca.ting existing funds; emergency room visits alone fell by 44 percent

(17, 24). The St. Paul, Minn. Maternity and Infant Care Project opened a

comprehensive clinic in an inner-city junior-senior high school, providing

athletic, job and college physicals, immunization, weight control and

contraceptive informition, counseling, and referral. Among other measures of effectiveness, the pregnancy rate for the school population fell

from 79 per 1,000 to 35 per 1,000 in 3 years (17).

All the highly regarded programs we reviewed appear to have certain

attributes in common:

They tend to employ nurse practitioners or other personnel with

training beyond the traditional diploma nurse who have wider

health education and primary care responsibilities than usually

permitted school health nurses and who have adequate pediatric consultation. In areas with a particularly strong and effective

health center, health department or hospital, the program tends to

be controlled and supported by the health sector, with space and

cooperation provided by the schools but without school control.

They tend to provide a broad array ofservices.

They make major, and successful, efforts to work closely with

parents, especially of young children.

In rural areas, they are often supported and controlled jointly by

the education and health sectors, with one or more school nurse

practitioners and related personnel offering readily available

primary care for families of an entire area. They tend to be financed either through a special private grant or

public categorical grant, or resourceful pooling of various child

health-related sources of continuing revenue. Funding for school health services is a source of major concern. IIt

clearly is not possible to expand even the most cost-effective school-based

primary care without a steady source of revenue at least somewhat greater

than that supporting most school health programs. Many schools spend

less than 1 percent of their budgets on health services. The best schoolbased primary care units vary in cost from $30 to $150 per child each year,

which is highly cost effective from the standpoint of public health care

expenditure but far more than most school health programs now spend.

Even highly cost - effective programs not offering complete primary care

but capitalizing on the economies of scale available 'n areas such as

preventive dental care require more money than most schools are

accustomed to .paying. Without increased categorical funding or access to

third-party reimbursement, innovative school -based primary care is not

likely to expand greatly in the future. Both the Office of Maternal and Child Health and the EPSDT program

249
have initiated important demonstrations in the support of school health

programs. Similarly, many school districts are using ESEA-Title I, Migrant Education, Child Development, CETA, and other monies in

partial support of school health services. Whatever the Federal commitment, State and local support will

continue to be a major component of school-based programs. State and

local authorities should take note of overall public cost savings achieved

by exemplary programs such as those in Hartford, Galveston, Cambridge,

and Posen-Robbins in Chicago. In general, the most significant compo- nent of cost has been the added training of nurses. But over time these

costs have been largely offset by efficiencies and reduced need for direct

services by part-time physicians. Moreover, as noted in a recent review of

innovative programs, "There is no evidence to date that expanded school- based health services will reduce appropriate encounters with pediatri- cians. But there is a strong likelihood that inappropriate encounters may

be reduced" (24). Various cities and States plan to expand greatly the availability of

school-based primary care. Such activities are at various stages of

implementation in Pennsylvania, Louisiana, New York, Connecticut, Utah, North Dakota, Colorado. and California. The Robert Wood

Jekinsoa Foundation is sponsoring major demonstrations in four of these States. These efforts deserve attention as possible prototypes for more general programs. The Panel believes school-based health services should be considered a

desirable way of delivering primary health services to school-age children,

and possibly to preschool children, in those communities where it is

possible to utilize schools as the site for the provision of health services

rendered under the auspices of a health department, health center, hospital, or some combination thereof, and where parents support and

actively collaborate in fashioning and maintaining such arrangements. Steps should be taken by all States and by the Federal Government to

establish the necessary preconditions and flexibility to make expanded

school--based primary care possible where such arrangements seem

app.,--..,priate. These steps include: The adoption of State laws and policies to permit full use of nurse practitioners, dental auxiliaries and other qualified personnel in

the schools in offering a wide range of educational. preventive,

and primary care services to children The further support of demonstrations in Medicaid reimburse- ment and the pooling of various public sources of support for child health services rendered in selected school settings The facilitation of ..ontractual relationships to provide preceptor- ships, backup relationships, and other forms of linkage between

school health serv;.:cs and those provided by medical schools,

hospitals, privat..3 group practices, CHC's, RHC's and Children

and Youth.proj,%:cs We also urge that particular attention be given to school-based services

for adolescents. Where issues of privacy and confidentiality have been

successfully resolved, health programs located in junior high schools and

high schools have frequently been very effective in making needed health

250

2
services, including counseling, more accessible to young people. Further demonstrations should be designed using the school as the site of care for

delivery of primary services to this age group by health departments,

CHC's, group practices, and hospital-based units. There are many school systems where it will not seem wise to locate a

comprehensive primary care program in the schools. Schools and school

systems without such comprehensive primary care programs should utilize professionally qualified muses to prove -le health education, counseling, and preventive services, to work with parents to link children with other

health services, and provide professional nursing supervision for children

with chronic illness or handicapping conditions. These nurses should undertake a vigorous linking and followup role

pegged to school entry health requirements, and should help to implement

P.L. 94-142, serve as liaison to the home, and provide professional nursing

supervision for children with chronic illness or handicapping conditions,

many more of whom are now in regular schools as a result of P.L. 94-142.

School nurses should be trained in physical assessment, have in-depth

education in child development, family counseling anticipatory guidance, and learning problems; be able to deal with common physical problems and refer others; have a basic public health background; be skilled in

basic methOds of individual and group health education, and have an indepth orientation to referral sources in the community.

Preschools and Day Care Centers

There has been a rapid increase in the number of children..who attend

day care or preschool programs for some or all of the dayas many as 1,533,000, or 25.5 percent of children under age 6 receive preschooling or

day care in a licensed facility or a Head Start program. This means that

early childhood programs now offer a significant base for helping families

to ensure that their children receive basic health services. In addition,

these programs can do -a great deal' to promote and protect the health of

the children in their dare_

It seems a wise investment to assure adequate. resources for prevention

and health promotion in facilities for preschoolers, where potentially

debilitating problems can be found early, and promptly averted or treated.

Furthermore, many children in full-time day care are from high-risk

families for whom systematic help in obtaining needed health services is

criticaL Many are with their families only in the evening, when most

community health services are unavailable. The children' may receive only

acute and episodic health care in the pediatric night clinic, or hospital

emergency room, if a daytime trip to the clinic or doclor's office means the

loss of a day's pay to the parent. Day care centers may thus offer the best -

opportunity for assisting families in obtaining preventive services such as

immunizations, nutritional services, and periodic assessments for their

children. Day care centers are also in a position to help families get children to needed followup care and care for acute illness.

We believe a more extensive commitment of resources aimed at

improving health services for children in Head Start and other preschool

2S1
programs is essential. These resources can be used to link families with

sources of ongoing care and to provide certain kinds of health supervision

directly. In addition, the health and safety conditions in centers and day

care homes where young children spend a significant portion of their time

must ensure proper care for health emergencies and avoidance of

accidents. Personnel in day care centers and preschool programs should be given

the training and support to enable them, in cooperation with parents, to

accomplish the following: Ensure that children receive immunizations and comprehensive health assessments at the proper intervals, with appropriate

referral and followup. by helping to link families to sources of

continuing care and by arranging for the provision of needed

services.

Ensure that appropriate standards for safety, nutrition, infection

control, and accident prevention are established and adhered to.

We recommend more systematic orientation than now typically occurs

of staff working in presctlool and day care programs to the large potential

significance of health services in their programs, and inservice training to

equip them, in full collaboration with parents, to use the opportunities

they have to improve the health of the children they serve. There is an

urgent need for continuing education of preschool personnel, to upgrade

their knowledge of child development, mental health practices, and the

physical needs of children. The implementation of these recommendations may require the

utilization of a qualified health provider on a full- or part-time basis to

provide clinical and program consultation. Qualifications for such a

provider should include formal preparation in child growth and development and experience in identifying and caring for the unique health needs

of young children. Some preschool programs arrange for continuing health supervision by

a trained nonphysician, such as a nurse practitioner, based in a health

department, community health center, or hospital which provides the

necessary clinical backup. One nurse may cover about five day care

centers, spending enough time in each center to really observe children,

identify problems, talk with parents, and teach staff.

Depending on local circumstances, day care programs may either

provide certain services directly or assume a coordinating role, working

with others in the community to assure that services are available and

monitoring to see that the children receive them. In Pennsylvania, for

example, an Interagency Task Force on Early Health Screening, established to work out the kinks between EPSDT and other publicly funded

programs for young children," was successful in increasing the proportion

of eligible children receiving EPSDT screenings from 39 to 90 percent. In

addition, a significant number of children in Title XX funded day care

received preventive health services that they had formerly gone without

(25). In Auburn, Ala.. the Head Start program qualifies as an EPSDT and a

WIC provider. A health coordinator and a registered nurse arrange for

and provide some health services, while the program contracts with

252
physicians to do screening and provide corrective medical services. The

program also works with church groups and foundations to provide

transportation to health services, obtain food stamps, and ensure that

handicapped children receive needed care (26).

Head Start programs provide particularly promising opportunities to

improve health care for their target population. 3- to 5-year-old children

from low-income families, Head Start is a comprehensive child development program providing education, health, and social services with a

strong emphasis on parent involvement. Its health promotion activities for

children are among the most successful supported by the Federal Government. The Panel concurs with a recent report of the General

Accounting Office (27) that Head Start as a whole is a major success, and

its further develoPraenf offers one excellent vehicle for promoting the

health of the Nation's low-income children. The health component of Head Start arranges for, or provides, a broad array of preventive,

diagnostic, treatment, and-rehabilitative services for enrolled children.

The Panel believes that the technical assistance and training component

in health for Head Start personnel shouldbe substantially ..trengthened in

the future. In addition, Head Start funds available for health activities

should be enlarged and formal agreements with Medicaid further negotiated to increase the funding for certain services such as outreach,

dental care, preventive health assessments, and case management for

follow/up care. The Panel also shares the enthusiasm expressed in the

GAO report on Head Start regarding the _Child and Family Resource

program, a variant of Head Start involving special family needs assessment, case advocacy and case management superimposed on a traditional

Head Start program. We concur that this model of comprehensive service

delivery is a promising one to build on for the future_ Because the Head

Start health services component has developed and demonstrated the

effectiveness of many of the foregoing recetr rnendations, we believe that

sharing Head Start materialsand exp..... es with other child care

providers would be extremely useful. Day care centers and homes which rece-..c Federal assistance through

Title XX are another significant avenue for improving the delivery of

health services to young children. These serve roughly 1 million preschool

children each year and are subject to new regulations of the Department

of Health and Human Services requiring that all participating children

receive comprehensive health assessments, be up to date on imrnuniz." ations and receive assistance in obtaining continuing health services, and

that all providers meet standards for safety. So that these new regulations benefit children as they were intended, the Panel recommends the

following steps be taken: The regulations should be implemented promptly, with strong . support from State health agencies and Tide XX agencies.

State Title X3r.".. funds should 'cover the costs to day care centers in

staff time to implement the health component of the regulations,

State health agencies shoUld assist the State Title XX agency and

day care providers in their efforts to arrange for necessary services

for children in day care and to coordinate these services with the

child's other source(s) of care.

253
Federal interagency agreements should be developed among OHDS, PHS, and HCFA to encourage vigorous implementation

and to find funds to pay for the assessments and followup care for

those children not covered through other sources. Communities can take additional steps to link preschoolers in publicly

funded or proprietary slay care to health services and to other service

networks. State agencies responsible for licensing day care providers

should include basic safety standards and prov:ions for assuring that

children receive health services as conditions for certification. In addition,

schools, health care providers, and those community and State authorities

with responsibility for monitoring overall patterns of primary care for

children should be charged with establishing firmer links to the preschool

and day care networks in their municipalities and States, and incentives

should be provided for innovative health service agreements with day care

and preschool programs.

REFERENCES AND NOTES

(1) Institute of Medicine. A Manpower Policy for Primary Health Care. National Academy of Sciences.

Washington. D.C.. 1978.

(2) The Robert Wood Johnson Foundation. Regionalized Perinatal Services. Special Report. Number

Two. p. 4,1978. (3) U.S. Department of Health. Education, and Welfare. Office of Education. Progress Toward a Free

Appropriate Public Education. A Report to Congress on the Implementation of Public Law 94-142:

The Education for All Handicapped Children Act. Washington. D.C.: -US. Government Printing

Office. DHEW Pub. No. (OE) 79-05003. Ja.niary 1979. (4) Coe, R. -Dependency and Poverty in the Short and Long Run.- In 5000 American Families

Patterns of Economic Progress. Vol VI. G. J Duncan and J. U. Morgan. eds. Ann Arbor. Mich.:

Survey Research Center. 1978. (5) Coe. R. -A Preliminary Empirical Examination of the Dynamics of Welfare Use.- In 5000

American FamthesPatterns of Economic Progress. Vol X. M. S. Hill. J. N. Morgan. and D. H.

Hill. eds. Ann Arbor. Mich.: Survey Research Center, in press.

(6) Dutton. D. B. -Children's Health Care: The Myth of Equal Access.- In Better Health for Our

Children: A National Strategy. Vol. IV. Washington_ D.C.: U.S_Government Printing Office. 1981.

( 7) Grief. J. W. and T. E. Cane. Jr.. eds. Manual of-Pediatric Therapeutics. Children's Hospital

Medical C.entei-, Boston. Department of Medicine. Boston: Little Brown & Co.. 1974.

(8) U.S. Department of Health. Education, and Welfare. Physicians Visits. Volume and Interval Since

Last Visit. United States. 1975.- National Center for Health Statistics 'Research. Data from the

National Health Survey. Hyattsville-. Md. DHEW Pub. No. (PHS) 79-1556.. 1979.

(9) U.S. Department of Health and Human Services. 1976 National Survey of Family -Growth.

Unpublished data. 1980. (10) Task Force on Pediatric Edueation. The Future or Pediatric Education. Monograph. Evanston. Ili.:

American Academy of Pediatrics. 1978.

( II ) IRS Associates. Inc. "Community Health Center Cost Effectiveness Elsiation.- Report submitted

to the Office of the Aasistaist Secretary for Planning and Evaluation., LT.S. Department of Health

and Human Services. Washington. D.C.: U.S. Government Printing Office, 1980. ,

(12) Hochheister. I.. K. Woodward.. and E. Charney. -Effect of the Neighborhood Health Center on

the Use of the Pediatric Emergency Departments in Rochester. New York?' New England Journal

of Medicine 285: July 1971. (13) Sokol. R.. R_ Woolf. M. Rosen. and K. Weingarden. A.nteprruni Care and Outcome:

Impact of a Maternity and Infant Care Project.- Obstetrics and Gynecology56(2): 150-156. August

1980.

(14) Foltz. A. M. The Organization and Financing of Child Health Services.- In Better Health for Our

Children: A National Strategy, Vol. IV. Washington. D.C.: U.S. Government Printing Office. 1981.

(15) U.S. Department of Health and Human Services. Public Health Service. -Health Maintenance

Organization Program Status Report- Da HS. 1971.

254
(IS) U.S. Deportemeat at Health. Education. and VIe lam. Public Health Service. "National HMO

Census of Prepaid Elmee.' Emeraesse hosed on June 30. 1979 report. (Si) Latkowits. Si. and D. Asdrelis 'The Orgusisatios of Printery Health and liralth-Reiased

Psych0800111,,, and Support Services for Children and Pregaant Women.- In Bernier Mesh* Ibr Ow Chi 'drew A National Strategy. Vol. IV. Washington. D.C.: US. Government

Prating Office. 191L

(IS) Chen& A. mUrIbna Children and Yob: The Role of Local Health Departments.** Paper for a

National Symposium an the Role of Stay and tb Departments in Ambition to Personal

Health Service", supported by pants from the Wood .Pabankon Foundation and Bureau of

Community Health Services. DREW (MCR-41301113). . (19) Miler. C A.. M. IC. Mora. J. 1. Koh:h. M. L. Brow% and M. P. Brainerd. "Role and New

lartiatives of Local Health Depormsents for Delivery of Persosal Health Services.- Paper for a

National Symposium on the Rain of State and Local Health Departments in 1Relatioa to Personal Health Sonia'''. supported by grants from the Robert Wood Johnson Foundatioe and Bureau of

Community Molds Services. DREW (MCI' Project L107). (20) Goldeaberg, R. Director. Bureau of Maternal and Child Health. SUM Heil* Department,

Montgomery. A. Unpablished data. 1900.

(21) Division of Myriad Health. Gporg;ia Department of Human Resources. Atlanta, Ga.. 1900. (27) Comptroller General of the United States. U.S. General Accounting Office. Berner Management and More Itmourcer Needed To Strengthen Federal Efforts To Improve Pregnancy Outcome.

Washington. D.C.: U.S. Comatunnenst Printing Office. Pub. No. HRD-00.24. January 21. 1900

(23) Messick. G. and 14. J. Bane. The Nation's Fanadien: 1960-1990. Cambridge. Mass.: Joint Center

far Urban Studies of MIT and Harvard University. 1900. (24) The Robert Wood Johismon Foundation., Special Report School Health Services. Princeton. NJ.:

The Robert Wood Johnson Fours/dation. 1979.

(25) CDF Imparts. VoL R. No. 1, p. 4. October 1. 1900.

(26). Spears. N. Head Start Program Director. Auburn. Ate. Persons' emmisunication. 1910. (27) Comptroller General of the 'United States, U.S. General Ac Office. Early Childhood and

Family Devinlopanent Programs Improve the Quality of Life 'or Lenr-Inciame Fandben. Wasliairos,

D.C.: U.S. Government Printing Office. Pub. No. HRD-79-40. 1979.

2

255
CHAPTER 7

DELIVERY PROBLEMS OF

SPECIAL CONCERN

In reviewir arrangements for the delivery of needed health services to

infants, cLildi en, adolescents, and pregnant women, the Panel identified a number of issues which offer special challenges or opportunities that cut across individual provider arrangements, and which we believe should be

specifically addressed in the formulation of public policy. These include: Home visiting Primary mental health care

4r- '4.7aP-zorical services, including family planning and preventive dental care

Mass screening Hospital care Regiona Ji7i Lion

HOME VISITING

Home visits to families before and after the birth of a baby by nurses or

lay visitors under nurse supervision is not a new concept In a variety of forms and with a number of specific purposes, home visiting has been

systematically undertaken in some communities in the United States and

in many countries of Western Europe, often forming the cornerstone of organized efforts to improve maternal and child health. It was a more widespread phenomenon in the United Stat. cs several decades ago than it

is today, having fallen into disuse not because of diminishing need or lack of success, but apparently because funds and professional talents are

increasingly concentrated on therapeutic and more technology-intensive

services. There is now renewed interest in a significant expansion of home visiting services. New and revitalized home visiting programs are under Way in numerous communities in many parts of the country, with both

public and private support, and under both public onteperiiivate auspices. The Department of Health and Human Services has exploring an

expanded effort to promote home visiting programs. The American Academy of Pediatrics in June of 1980 sponsored a conference to examine and to highlight the potential of home visitor programs for improving the delivery of preventive health services to mothers and young children.

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We believe this new interest reflects a recognition that:

Many of the most important potential gains in child health status,

given the state of today's medical knowledge, cannot be made

without systematic and aggressive efforts to extend the reach of

health professionals beyond the walls of their own offices and

institutions and out to where the people most in need of services

-e.rtually are. A growing proportion of problems in maternal and child health

arc rooted in the complex life situations of families. Much of the

help pregnant women, young children, and parents need and are

not gettingfor nple, in preventing accidents, nutritional

problems, and child neglect and abusecan best be provided in

settings outside of major health institutions.

As more providers of all kinds attempt to combine preventive and

curative services, in order to enhance the quality, effectiveness,

accessibility, and continuity of both, there is an increasing tension

between the tasks of curing, and the tasks of health promotion.

There is a seard' underway for a clearer focus for preventinn- oriented activities, and for a way of assuring a reasonable

allocation of resources to deal with the complicated interplay of

social, environmental, and biological factors that are involved in

effective disease prevention and health promotion.

For many families in our mobile society, the traditional sources of

support for pregnant women and new parei46: including family

and friends, are increasingly hard to come by. Some of the education in parenting skills which many new

mothers used to get in the hospital during the days following birth

is no longer provided because of a shorter hospital ' stay for

childbirth (1). Furthermore, some medical problems,. such as

neonatal jaundice, may only become apparent after the baby goes

home. In rnany areas, health services may be hard to locate, and

systematic efforts are required to link people most in need with

requisite services. Increased public investments in large-scale financing programs,

especially Medicaid, while improving access to services, shave not

been sufficient to ensure that services are, in fact, received..

Most programs of home visiting now in operation seem to be the

product of at least some of these forces. While the programs vary widely,

most have the following characteristics:

They provide information and help with making the home, a safe

and nurturing environment for the infant.

They prOvide information and help with nal problems for

the pregnant woman and infant.

They provide certain basic health service. tp -itysical and developmental assessment, immunization) or arrange for them to\ be

provided.

IN They seek to assure that the pregnant woman and family are

linked With an ongoing source of health services, and to social

support services as necessary.

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They teach about basic iiealth practices, and provide guidance

about the most effective use professional health resources. They assist families who need belp in integrating the infant with

the family structure and life style_ Some seek to identify families at special risk and in need special

services.

Some seek to personalize health service:: in ways that are difficult to accomplish in most health care setting. Some s-_,e.k to enhance the parents' ability to stimulate the infant's social and cognitive development. Some programs use nurses to make the home visits, some train lay persons who work under nurse supervision, and some combine these methods. Some programs emphasize the telephone availability of the home health visitor between visits. The programs have operated under a variety of auspices, including health departments, community health

centers, hospitals, medical and nursing schools, and family drop-in

centers. Most begin visits during the prenatal period, some limit services

to the first year of an infant's life, and some extend them 1..atil the child

enters school. Some programs are universal, offering sarvices to all infants and

pregnant women in a given area, or to all where birth occurs in a given

hospital. Others offer services only to high-risk families, with risk being

defined socially (low income of family, social isolation, welfare eligible) or medically (low-birth-weight infant, discharge from infant intensive care unit). Some programs combine these concepts, offering services universally, but actively recruiting, or providing a greater intensity of services, to

high-risk families. The reported data on the effectiveness of home visiting suggests that it can be a highly effective form of intervention, especially when begun

before the birth of the baby. In a controlled clinical trial conducted in Montreal, families receiving prenatal as well as postpartum home visits experienced fewer home

accidents, fewer problems with feeding and mother-child interactions, more up-to-date immunizations, and higher scores of assessment of home

environment and maternal behavior (2). The:e measurable successes were

far greater among those families where home visiting began during

pregnancy than where it began after birth of the baby. A home visiting program in rural Appalachia found that similar health outcomes were achieved for experimental and control children, although

the former were at greater socioeconomic and environmental disadvantage; the experimental group also experienced lower outpatient utilization

and lower costs (3). In a controlled trial undertaken by C. Henry Kernpe, M.D., and his associates in Denver, an experimental group of parents :dentified as being

at high-risk of child abuse and neglect who received reguiai- home visits by

lay visitors and whose children received regular care by a pediatrician and

a public health nurse did not abuse their children in the 2 years after the

study began. In the high-risk control group of parents, at least five

children were hospitalized with injuries thought to have been inflicted by

parents (4).

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A collaborative review of 14 early-stimulation programs found that they

had major benefits in children's school performance several years later.

Most of the programs reporting a substantial effect in reducing special

education placement included a home component or were home-based

(5)-While many of the people involved with these programs are distressed

at the inadequate research attention home visiting has received, most

agreed with the program director who told us, "I know that home visiting

works. I know for sure it is one of the best tools we have to support

families in nurturing and protecting their children. It w uld be criminal to

withhold additional public support until that magic moment arrives `when

all the data are in.'"

The Panel is prepared to-make a judgment about the usefulness of home

visiting in the absence of more conclusive data because the existing

evidence extends over many years and through many nations and

cultures, and all point in the direction of effectiveness; because the

unintended and unanticipated effects all seem to be positive; because the

impressionistic evidence we have come acrossis extremely persuasive; and

because the problems this form of intervention is aimed at are so urgent.

The Panel has concluded that Federal. State, and local authorities

should increase substantially their support for home visiting programs as

part of their efforts to improve maternal and child health. Such increased

support must be ofsufficient magnitude to: Permit a substantial number of States and communities to use

home visits by public health nurses or other qualified personnel as

one means of assuring access to needed health services for

pregnant women and infants;

Enable health departments, hospitals, comprehensive health centers, and other providers to es'ablish or re-establish home visiting

programs for women and infants at high risk, and ultimately for

all pregnant women and infants, as a routine component of

maternal and child health care; Allow for the evaluation of a wide range of prototype programs, to

make possible the dissemination of new information about

especially successful and cost-effective approaches to home

visiting. We consider it essential that new home visiting programs be made an

integral part of other efforts to improve services to pregnant women and

infants. Home visiting is not :3, panacea, and will not be effective in

isolation, without links to ccntinuing care for the family and organized

backup and consultation for the visitor. We see home visiting as a

link to continuing care, not a substitute for it. We believe that

participation in such programs by the pregnant woman or mother must be

unambiguously voluntary, and all home visiting programs must respect

family privacy and individual and cultural differences. If families are

selected because of social need, they must not be pejoratively labeled.

The support of home visiting programs should come from special grants

for this purpose from the Federal Government and private foundations,

increased Title V funds, State and local revenues which are 'now

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supporting some of these activities, and Medicaid (through the use of waivers). The costs of the kind of program we propose are relatively modest when

compared with costs of other forms o f health interventions, or when

compared with the costs of treatm- t (including for neonatal intensive care) for conditions that an effect .z program of home visiting can often

prevent. Cost estimates of a fully implemented home visiting program depend on

the size z-nd nature of the target population, the degree to which lay

visitors working under nurse supervic: arr.= utilized, and the number and

nature of the visits. In order to provice some guideposts to policymakers and others regarding the general magnitude of costs for a revitalized

program of home visiting throughout the Nation, we have made some

rough cost estimates. Our calculations indicate that a nationwide program, utilizing public health nurses along with trained lay home visitors working under nurse supervision, could include all families with a high-risk

pregnancy or high-risk baby, all low-income families with a pregnant woman or newborn, and all other families expecting their first child, for an

annual cost of about $226 million_ To cover only high-risk pregnancies and babies would cost an estimated $111 million per year (6). While we believe there is sufficient evidence of the effectiveness of

home visiting to justify public support that goes well beyond a research

and demonstration phase, the Panel also considers it essential to refine

available knowledge about the precise nature of the interventions most

likely to work in various circumstances. This means expanded support of home visiting must be coupled with a reporting system and research

design to generate answers to such questions as: What measures will provide a reasonable basis for evaluating the

effectiNeness of home visiting? Which of the various purposes that home visiting has been meant

to serve seem most likely to be achieved? Which population groups are most in need of home visiting" Under what circumstances are home visits best conducted by

nurses? By other professionals? By trained lay persons? How

should these personnel be trained and supervised? What consultation do they require? What are tht costs of achieving various purposes and of serving

various types of families? When should honk:: visiting begin in order to be most effective? Is

it critical that it begin during pregnancy? Under what circum- stances should home visiting continue beyond the infant's first year? What related services (such as hospital rooming-in, other efforts aimed at promoting attachment in the newborn period, and parent groups or drop-in centers) seem to be associated with or to

enhance the effectiveness of home visiting? Does dome visiting

enhance the effectiveness of other services?

What auspices (public or private; health department, health

center, or hospital) for home visiting programs seem to be

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optimal? Are there generalizations or guidelines regarding organizational auspices and effective linkages that could be applied

nationwide? What factors determine the acceptability of systematic home

visiting programs by the public and by potential recipients of the

services? Is the acceptability and quality of home visiting likzly to

be higher if targeted on families in social, economic, or medical

need, or if universally available?

What factors determine acceptability and support of the program

by relevant health professionals and institutions?

Under what circumstances should third-party payers fund home

visiting to pregnant women and infants as a standard benefit?

Several years of substantially increased investment in home visiting

programs, coupled with proper evaluation, will provide the foundation for

an ongoing program of maximum possible effectiveness at a minimum

feasible cost. And we have no doubt that many families will have

benefited significantly from the services in the meantime.

PRIMARY MENTAL HEALTH CARE

The Panel's public hearings, consultations, and studies left us disturbed

and alarmed at the Nation's lack of progress in making appropriate and

adequate mental health care available to all our citizens, including

mothers and children. In addressing the organizational issues involved in

the delivery of mental health services, we were struck by two major points:

` Many health problems which come to the attention of primary

care practitioners are either emotional in origin or have important

psychosocial components. A significant portion of what might be termed "primary mental

health care" is in reality provided in general health care settings

and in schools, day care centers, juvenile detention facilities, and

other sites by personnel not specifically trained as mental health

professionals. These facts, unfortunately, are not adequately recognized at present in

the organization and financing of services, in the training of many health

professionals, or in arrangements to provide expert mental health support

and consultation to parents, general health care providers, teachers, day

care workers, social workers, correctional officers, and others who deal

with children and their families day in and day out. We look to the new

Community Mental Health Systems Act to help correct some of these

deficiencies, but nevertheless consider it worthwhile to comment on the

current situation, especially as it affects children, and recommend needed

changes. The Panel believes that more relevant, more responsive, and more

appropriate mental health services are essential for the well-being of

children, and that assuring me universal availability of such services will

require a closer relationship between the mental health system and other

sources of care for children. We therefore recommend that policymakers

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and health care providers assign high priority to organizational reforms designed to achieve better integration of mental and general health care, and better coordination of the mental health system with other service

systems, including education, corrections, and social services.

Integrating Mental and General Health Care

There is a growing recognition that mental and physical aspects of health care are inseparable and that this fact must be better reflected in

our organizational arrangements for the delivery of primary care. In

recent years, a number of expert bodit-;. have come to this conclusion,

including the President's Commission on Mental Health, the Institute of

Medicine Conference on Mental Health Services in General Health Care,

and the World Health Organization_ The need for greater integration of mental and general health arises

from three sets of considerations. First, many individuals and families

confronting emotional problems of varying severity seek care not from

mental health specialists but from primary care physicians and other

general health ca re providers. Often they come with a physical complaint,

because physical and mental distress frequently coexist, because emotional stress can trigger physical problems, and because some parents and

some youngsters view physical complaints as a more legitimate basis than

emotional problems for seeking professi anal help. In addition, many

people, fearful that they or their children will be labeled mentally ill or disturbed, and. suspicious of mental health specialists, are simply more willing to seek and utilize care from general health care providers.

Whatever the reasons, it is estimated that up to 60 percent of all persons with "mental disorders" are seen in the general medical care- system

(compared to 15 percent in the "mental health sector." and 22 percent not in treatment or being seen in other parts of the "human services sector")

(7).Second, many problems requiring psychological or social interventionssuch as child abuseare most likely to come to the attention of

professionals in general health settings. Often, the moment of crisis which

precipitates the visit to the physical health service is an opportune time for

intervention, since _ people seem more amenable to changing unhealthy

sac; or psychological practices at times of crisis (8).

acre is a third reason why greater integration of mental health and general health care is needed. As discussed at length elsewhere in this

report, effective primary health careespecially for pregnant women, mothers and childrenincreasingly requires expertise in recognizing and

dealing with the psychological, social, and behavioral aspects of health. In

responding to the needs of the family of a handicapped child for emotional and social support, or providing guidance to the parents of a

"difficult" baby, or counseling a young teenager seeking a prescription for contraceptives, a primary care practitioner is actually providing what

amounts to preventive mental health services. In helping a pregnant

woman tAa'stop smoking or drinking, or a diabetic youngster to adhere to a

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prescribed regimen, the primary care practitioner is applying an understanding of social, behavioral, and developmental precepts to prevent

serious physical illness or disability. Medical educators and prefessional groups, recognizing these trends,

are making major efforts to modify traditional training and' practice

arrangements so that all types of primary care p-oviders will be better

equipped to deal with emotional, psychological, and behavioral problems

and needs..Examples of such efforts include the Report of the Taz.1.1< Force

on Pediatric Education, the appointment of an American Acadetny of

Pediatrics Committee on Behavioral Pediatrics and the Family, revisi.mi of

residency requirements for pediatricians and family practitioners tc reflect

the importance of such skills, and support by several private foundations

of residency training programs in behavioral pediatrics (9).

Despite such positive steps, much remains to be done. Many prizr.d.ry

care providers fail to recognize specific psychosocial disorders (10).

Indeed, surveys of primary care physicians indicate they feel they were not

adequately trained to recognize, diagn,:se, or treat either mental disorders

or the emotional aspects of physical disorders (/ /). Not surprisingly, then,

even when primary care providers do recognize emotional and mental

disorders, their response to them is not always appropriate (12). Mental

health professionals, on the other hand, may not always understand the

interaction of psychosocial and physical processes, and how to coordinate

treatment with primary care providers (13). Most mental health professionals work in settings where they are more likely to have links to more

specialized mental health facilities than they are to primary care providers.

Barriers to better integration of mental and general health care are both

sizable and firmly planted. Some involve differences between the two sets

of professionals in personal and professional skills, styles, attitudes, and

reward systems, and in their views of health and disease. Some have been

created and reinforced by separate bureaucracies and =.dvocacy networks,

each jealously guarding its own "turf' and funding sources. Some stem

from the reluctance of third-party payers to reimburse for any services

other than well-defined technological procedures. And some result from

the physical segregation of mental and general health care providers,

which offers scant opportunity or encouragement for collaboration and

consultation. The structuring of primary care units to allow for a better integration of

mental and general health care would increase the probability of prompt

and accurate recognition of psychosocial problems as well as mental

illness, and enhance the likelihood of prompt and effective interventions.

It would also help primary care providers deal more effectively with

psychosocial aspects of normal growth and development, and of physical

diseases and injuries. The Panel believes that the "time is ripe for new and systematic efforts to

organize and finance primary careespecially for children and pregnant

womenin ways which will encourage adequate attention to psychological, social, and behavioral components of care and which encourage

referral, consultation, and ease of communication between mental health

professionals and primary care providers.

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Where integration of mental and primary health care has in fact

occurred, the results have been promising. The most recent and welldocumented examples of .successful integration come particularly from

health maintenance organizations (HMO's) and community -health centers_ Although these delivery mechanis. ras- account for only 2 percent of patients with mental health problems who were seen in the general health

care sector in 1975 (14), their experience does demonstrate that integration

is both possible and beneficial_ The existence of federally supported health programs and community

mental health of-aters in the same community provides special opportunities to bring about close collaboration, opnortunities that should be seized

on by both programs at the local as well as the Federal level.

One program which has successfully integrated health and mental

health services is the Bunker Hill Health Center in Charlestown, Mass., a

neighborhood center established under the auspices of Massachusetts

General Hospital, which offers primary care, mental health, social

services, dental, nutritional, and other services -to children and adults. The

mental health program is a joint effort of the neighborhood health center (NHC) and the local community mental headth center (CMHC). The

CMHC provides the NHC with a child psychiatrist consultant, and

organizational linkages between the NHC and the CMHC have ensured

the prevision of secondary and tertiary mental health services by the CMHC for patients seen by the NHC. Frequent communication between

the NHC and the CMHC has facilitated coordination of specialized

services for the mentally retarded and for children with behavior or

learning problems_ Within the neighborhood health center, there has been active cooperation between general health and mental health providers. Integration of

health and mental health services is fostered by the use of a single medical

record and an effort to recruit staff with a commitment to and capacity for

interdisciplinary teamwork. Vehicles for communication include consultation, inservice education, ana a variety of collaborative programs to

strengthen mental health skills of health providers and facilitate referrals

of patients to mental health specialists when appropriate (1i, 16). ° Evidence of the effectiveness of such programs is beginning to

accumulate. One study, for instance, found that combining health and -

mental health care significantly reduces referral appointment failures, increases feedback on referral results, improves informal contacts, and

decreases stereotyping (17). Studies of 11 programs in HMO's and

neighborhood health centers where mental health, alcohol, and drug abuse

programs were integrated with general health care found significant cost savings after mental health care interventions, apparently due to a

reduction of inappropriate use of medical care (18-20). There is evidence that populations utilizing organized care settings such

as HMO's and community health centers typically make greater and more appropriate use of mental health services than do those using other sources of care. This finding holds true for both children and adults. Perhaps this is because patients are more willing to accept mental health

services when they are provided in a general medical setting (21), or

265 2
perhaps it results from the special efforts some organized setings make to

provide accessible, comprehensive and personalized care (22).

Coordinating Mental Health Services with Other

Service Systems

The need for mental health expertise clearly extends beyond the health

system to other settings where children live, play, and study. Children who

need helpwhether for transitory crises, serious emotional disturbance, or

learning or behavioral difficulties persist over timeare found

throughout the education, correction, and social services systems. Yet far

too often, the institutions which make up these systems have been ignored

or abandoned by those with tin- greatest mental health experience and

talent. Teachers, day care workers, juvenile correctional officers, foster

parents, social workers, guidance counselors, and others need far more

collaboration, consultation, and support from mental health professionals

than they are now getting in their efforts to help troubled youngsters. Help

for disturbed children and adolescents is best provided in as near as to

normal settings as possible, with the emphasis placed upon restoring the

functioning effectiveness of families, neighborhoods, schools, religious and

community groups, as well as upon enabling the young persons to respond

to normal sources of support, affection, instruction, and discipline.

It is the Panel's conviction that mental health expertise available to

institutions outside the health system, including schools, clay care centers,

foster homes, welfare and social service agencies, correctional institutions,

and other youth-serving agencies must be substantially increased. .4 majorrole of highly trained mental health specialists should be to serve as

collaborators, advisors, and consultants to a wide array of frontline

workers with children and youth. The schools offer a particularly important opportunity for applying

mental health principles, precepts, and talents in a setting where both the

immediate and long-term payoffs are likely to be great The precursors of

serious personality disorders are almost always apparent in the way

children relate to schools. One study which followed hundreds of

individuals from childhood into their 30's and 40's indicated the roots of

violent and other antisocial behavior could typically be traced back to

early childhood, particularly among boys, and that difficulties became

more obvious and were more likely to be recognized once children entered

school (23). Reading and learning problems; which usually surface in the

school setting, are often associated with serious later difficulties. Some 75

percent of juvenile delinquents, for instance, are significantly behind their

age peers in reading ability (24). The line between mental health problems

and school learning difficulties is, however, frequently difficult to discern_

El-I::rive cooperation between the mental health system and the schools

has become even more important with the advent of P.L. 94-142,

requiring the public school system to provide an education to emotionally

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disturbed children, whether in regular classes or in special classes. Mental health professionals can collaborate with educators, and both can help

children and their families in a variety of ways, such as: They can work together on the early identification of learning and

emotional disorders, and the development of .ppropriate interventions for both.

They can jointly counsel and assist the parents of children with

learning clifficultics, who may in the absence of such support develop feelings of helplessness and frustration which interfere with their children's emotional development. Mental health professionals can work with parents, teachers, and operators of day care programs to structure experiences for children at high risk for learning difficulties in a manner that minimizes the likelihood that secondary emotional difficulties will

occur.

Mental health professionals, educators, and preschool program

personnel can work together to enhance their understanding of both the emotional consequences of learning difficulties and the

learning difficulties experienced by children with emotional disorders. , 'The corrections and social service systems also need support from and

interaction with the mental health sys xi, both to improve services to

individuals, and to design better programs and institutional arrangements. For examr A the problems of infants and small children whose mothers are or may 7.0 imprisoned could be dealt with far more effectively than

they are.in most places today if sentencing policies, prison practices, and

the-placement of children of prisoners reflected a greater awareness of the harniful effects of severed parent:-child relationships. Others li1CelY to be in touch with the social service. system, and who

could-benefit greatly from better arrangements to help them, are pregnant teekragers and young mothers who have run away from home or been

pushed out of 'the family borne. Most emergency shelters for runaway

youth are -specifically required b.,' law to house no one under age 10, and

- therefore exclude young mothers with their infants. Young girls with babies are often left to fend for themselves or are referred to a social

service agency which provides, services on a walk-in basis, but these are often insufficient. For example, teenaged mothers who gcr on public assistance and set up housekeeping, often in an unfamiliar town, are known to have a high potential for child abuse, arm may need more

intensive services. -; Some homeless pregnant women make use of ho es for unwed mothers, such as those run by the Florence' Crittenden Homes, the Catholic Charities, and the Salvation Army. 'Their numbers, however, are decreasing, as ark, the numbers of available facilities. Many such agencies and facilities are not equipped to help °young people with multiple problems and no homes to which they wish to return. Most do not allow

the mothers to remain more than I or 2 months after the baby is born; and make no provision for the continuing support of these high-risk mothers and infants.

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Denionstration programs are needed to discover what works and what

does not with_infants, children, and adolescents who are in settings or

situations where the risks to normal development are-enormous, and-who--

are already in contact with some public or private human service agency

or institution_ Much stronger connections are needed between the

agencies trying to serve these young women and their infants and other

.sources of help_ including health and mental health services_

One such demonstration is currently under way under the auspices of

the Bronx (N.Y.) Psychiatric Center for children 3 mbnths to 5 years of

age whose mothers are emotionally disturbed, drug addicted, or otherwise

in serious trouble. The program seeks to help these women become

capable of responsible mothering, and to prevent functional disorders and

learning disabilities in their children. Staff provides a support network to

assist the mothers with problems of living and provide individual and

group psychotherapy, classes on child development, and opportunities for

therapeutic mother-child interaction. The staff also conducts a nursery

school where children can develop a positive self-image, and works to

ameliorate existing emotional and cognitive deficits (25).

Another example of better linkages is found at the Hill Health Center in

New Haven, Conn. Some years ago, the community served by the health

center accounted for over 20 percent of the referrals to the regional

juvenile court, although it accounted for only 4 percent of the population

of the region. At that time, few delinquents were seen at the health center,

and most of those referred for treatment by the courts did notIbin fact

receive care. The center determined that the services being offered were

quite inappropriate, they were not valued by these youths, nor were they

consistent with their "street" image. New programs were developed and

subsequently large numbers of black delinquent youth became involved

and received services than ,-,-5n programs led by indigenous workers, some

with police records in their own pasts, who have focused on naturally

formed groups, street work, jobs, activities directed by the youths

themselves, and advocacy with police, schools, and courts (20).

CATEGORICAL SERVICES, INCLUDING FAMILY

PLANNING AND PREVENTIVE DENTAL CARE

As we discuss in other sections of this report, the Panel has found that

primary health services for mothers and children are generally provided

most effe-ti,; ely in settings that offer a comprehensive array of needed.

services. Bu' there is persuasive evidence that some services are as well or

better provided in settings that are not organized to provide comprehensive care. Such services tend to have one or more of the followilig

characteristics: They are not dependent on continuity of contact with a single

he -11th provider (for .example, the effectiveness of vision and

hearing screening is less dependent on its being administered in

setting providing continuing routine health care than is developmental assessment).

268 ,272
They can easily be offered in settings which attract individuals for other reasons (for example, certain health programs aimed at adolescents may best be provided in schools, teen centers, or plactis where many young people work).

'They are less closely related to other health or support services

than are most health services (for example, little seems to be lost when preventive dental care is provided in a setting which does not provide other primary health services). Two examples of service which meet these criteria and to which the Panel attaches high priority are family planning and preventive dental care. Although both can be and often are provided in comprehensive care

settings, we find them especially well suited to being funded and provided

as categorical services.

Family Planning Services

In previous chapters, we discuss the significance of family planning

services in I- elping individuals and families to control the timing, spacing, and number of children they choose to have, and the need for family

planning services. to be made highly accessible. Toward this end, family planning services should continue to be available in many diverse

settingsas an integral part of every primary care unit, and also in

settings providing only family planning services, or only reproductionrelated care. People currently use family planning services provided by private

practitioners (including obstetrician-gynecologists, family piactitioners,

and internists), and by approximately 5,000 clinics in 'both the public and

private sector. The total number utilizing family planning services is unknown, but it -is estimated that in 1977, those receiving care from,

private physicians included 2_2 million low-income- women, and thaf 4.2

million women received care in organized programs. Of those receiving

services in an organized program, 42 percent were served by health

departments, 27 percent by Planned Parenthood affiliates, 14 percent. by

hospitals, and 17 percent by other agencies (such as free clinics,

neighborhood centers, HMO's, ersity health services, and community

action agencies) (26). There is impressive evidence that thi,: diversity of service settings and

the prominent sole played.by categorical family planning services are

major factors in the subs number of-women who today

use family planning ces. For many women, being able to obtain

family planning services part of continuing and comprehensive care

make_ s these services more 'We and results in their more effective

:wad appropriate use. For others, the opposite is true. The population

seeking family planning services includes a large number of individuals

Whir" gee their own needs as very different from those who rely, on more

cc.......erehensive programs_ The -clients of family planning 'clinics are

predominantly young, childless, and healthy. Some people whose primary'

atoncern is to postpone starting a family are reluctant to seek services-from

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progr-.ms whose major concerns are family and child health, and care for

the sick and ailing. o

For many seeking family planning services, and teenagers especially, the critical needs are easy access to the facility, and guarantees that

confidentiality and privacy will be protected. Moreover, categorical funding of family planning services has resulted

in alloci.tion of funds which more closely approximate the actual need

than is likely to be the case if authorizations for family planning programs

were absorbed with other health services.

On the basis of these considerations, the Panel recommends that

categorical funding for family planning services be expanded to assure

that these services continue to be made available in a variety of settings. and that all persons who wish to make use of family planning services,

including counseling will have access to such services. Family planning should be an integral component of every

primary care unit, but should also continue to be available in freestanding clinics and other sites of care which do not necessarily

offer thelull range of primary care services. State and local authorities should work closely together to assure

that various sources of Federal 'support for family planning.

including Title X of the Public Health Service Act, Medicaid, Title

and Title XX of the Social Security Act, are used in ways which

are complementary, mutually reinforcing, and congruent with

national goals and priorities in maternal and child health.

The Panel urges expanded support of family planning services under

Title X, Title V. Title XIX, and Title XX, with funding adequate to extend

services to the 3 million low- and marginal-income women and 1.8 million

teenaged women who are, according to estimates of the Alan Guttmacher

Institute. still in need of subsidized family planning services.

Preventive Dental Services

Much more is known about the etiology of dental disease than of many

medical diseases, and- preventive measures are well developed and of

clearly proven effectiveness. The oral health of adults is determined to a

large extent by the preventive and treatment services received as children

and by the oral hygiene practices and dietary habits they develop during

childhood. Dental caries and periodontal disease, the two most common

oral diseases of children arefor the most partpreventable (27). (For a

discussion of the need for dental treatment, see chapter 5.)

The fluoridation of water (as recommended in chapter 2 of our report)

has been characterized as one of the great bargains available in health care

because of its effectiveness in preventing dental caries. An increased

investment in additional preventive measures can be expected to result in

a further reduction in acute and often disabling incidents of pain and

discomfort, lower dental treatment costs, less disfigurement, clearer

speech. and improved ability to eat healthful food ----alb important

elements of health and well-being (28).

270 274
Effective prevention of dental disease requires both education and

preventive services. These have been shown to be most effective when provided in a coordinated wayespecially when the provider of the

individual services reinforces the impact of the educational messages. The most important educatio: 11 messages emphasize tooth brushing, flossing, and the reduction of sugar intake. The most important preventive services at the present time are the application of sealants, of topical fluoriths if needed. cleaning, and screening examinations. The Panel has concluded

that certain basic preventive services are so critical to improving the dental health of the Nation that preventive dental services must be made

available to all children. A prestigious study group of the Institute of Medicine /National

Academy t Sciences has recently come to a quite similar conclusion, and has recommended hat the first priority for action in dental health be the

establishment of a new, school-based, publicly financed plan to provide preventive dental services and education to school-age children (28). Many of the needed preventive dental services can be provided by

auxiliary personnel in a group or classroom setting more efficiently and more economically than in any other setting (28). Many families, especially low-income families, do not now receive preventive dental care. More than one-fifth of all children between the ages of 6 and 16. and more

than one-third of low-income children, had not seen a dentist in at least 2

years (29). and 12.3 percept of white children versus 26.0 percent of black

children aged 4-17 years had never seen a dentist. We therefore recommend that preventive dental services for children be made available in sites such as public schoolswhich can provide

substantial economies of scale. oral which simplify access. The location of preventive dental services in schools or other sites where children regularly

congregate has the-added ad-,4antagz: group educational services can be readily integrated or coordinated with the provision of the personal

services.

There is ample evidence and considerable consensus that the provision of the preventive dental s:z,rvices we recommend should nvolve the

extensive use of dental auxiliaries. There should be appropriate channels

for referral if treatment is indicated. Parents and any family dentist identified for each child would receive a report on the results of the

eX2' alirlatiOTIS. including the need for fillings or other dental care. In communities where schools seem to offer the most promising site for

these sir ices, the program should be school based. The services could be provided under the auspices of health departments, community health

centers. dental schools, or other community agencies or institutions, or

perhaps even by schools directly. We believe that schools are more likely

to offer appropriate premises for the provision of preventive dental care

-than for the provision of comprehensive health services (see discussion of school-based comprehensive health services. chapter 6), because we see

fewer potential problems of community acceptability and relationships with other sources of care. This is because the necessary linkages to other sources of care and the needed interventions themselves are inherently

simpler in the dental area. Also. a much higher proportion :- needed

271

zi 75.
services are not et, 1-,eing provided by anyone. and there is greater

agreement on wh 'es needed and effective services.

Regardless of le preventive dental programs we recommend

should be estate, .h appropriate parental involvement. These

programs should 1,4_ through new Federal grants. and State and

local revenues: in addition, the feasibility of utilizing other sources of

funds. including capitation lump sum payments from Medicaid and grants

from ESEA Title I, should be explored.

The Institute of Medicine (.OM) study referred to above concluded that

a program providing all school-aged children in America with dental

screening, prophylaxis, fluoride application as needed, and sL.alantsall

at appropriate intervalsalong with health education-plaque control,

would cost between $180 million and $360 million annually. (This

estimate does not include the costs of capital equipment during the startup

phase.) The inm study indicates that the costs of delivering the same

services in dentists' offices on a fee-for-service basis would be significantly

higher (28)- While we advocate that this program be universally available, we urge

that first priority be given to communities with large numbers of children

who lack access to routine dental servicesthat is, communities with a

high proportion of poor children, and some rural communities_

The case for a nationwide program to provide school-age children with

Preventive dental services applies also to preschool children over age 3,

especially with regard to the education component. Eighty percent of

children whose families have incomes under $6,000 have not seen a dentist

by age 6 (29). To begin to make some inroads on this problem, the Panel

recommends that as community programs of preventive dental care are

established, children in day care centers, day care homes, Head Start, and

other prr-,,;hoc.1 programs, be eligible to receive preventive dental services

through these programs, and that the community programs work with

providers of care to preschool children to assist them in providing

preschool ch'ildreS1 with the educational component of the program.

If community :preventive dental programs are not immediately established. special pi °visions should be made to assure the availability of

preventive dental services to preschool children, includin,,- bringing dental

teams to day care centers, or bringing day care children tk, -3.ental clinics.

PERIODIC MASS SCREENING

Screening for the presence of disease or its precursors his of course

always been an integral part of health care. Health histories, physical

examinations, and routine laboratory tests all represent various forms of

screening. Testing of newborns for a variety of problems, inc!.2ding

congenital and genetic defects, is LI -,articularly effective form of screening.

Some kinds of screening tests, such vision testing in the schools, have

long been performed in other than health care settings ti personnel other

than physicians. Over the last decade there has been a substantially

272 2
increased interest in and experience with the large-scale application of a combined battery of several screening tests, in settings other than the usual source of care.

Multiphasic screening, as organized mass screening for a variety of conditions was originally called, promised to be an extremely efficient way of allocating scarce medical resources. By utilizing inexpensive tests and

relatively inexpensive personnel to sort outfrom an apparently well populationthose persons in need of diagnosis and followup care, it was hoped that screening would assure early intervention when it was most effective, and would go far toward keeping the so-called "worried-well" out of the health system. The Kaiser-Permanente Health Plan pioneered

the use of ntuitiphasic screening among members of the longshoremen's union, and found that it was an effective and economical way to improve

the health status of its subscriber population. Since the screening was done

in the longshoremen's union hall; and since all those screened were

enrolled in a comprehensive health program, most of the problems that plagued later efforts at mass screening, including those of getting people to

come in for screening, and assuring effective followup, simply didn't arise. The largest single impetus for organized screening programs in this country came in a very different context about 15 years later, in 1967, when the Congress amended Medicaid to require States to provide "early

and periodic screening, diagnosis, and treatment" (EPSDT) to all children under 21 who were eligible for Medicaid. Tile enactment of EPSDT was

recommended by a Department of Health, Education, and We. re

(DHEW) task force that had been asked to look into the striking

prevalence of chronic handicapping conditions which had been revealed- by a Selective Service study. More than 15 percent of 18-year-olds had

bee.. rejected for the draft because of hearing, vision, dental, orthopedic, emotional. and developmental problems. The DHEW group estimated

that 62 percent of these conditions were preventable and correctable

through comprehensive and continuous care, and at least 33 percent

through a program based on periodic screening. The latter was chosen as

the most cost-effective route (30). The assumption on which the enactment oC EPSDT was basedthat the Nation could save money and that children's health could be

improved by providing targeted, limited services which had high payoffs

in finding costly. crippling illnesseshas proven to be largely false. The effectiveness and economies of finding, identifying, and ameliorating

serious conditions wit: n the constraints of a program that provides

screening services largek,-, in isolation, and does not have the rapacity to deal simultaneously or under the same auspices with all the health needs of a child, turned out to be illusory. Health professionals were frustrated

in-trying to utilize a one-time tening to discover the myriad conditions

that reveal themselves ov, Families seemed reluctant to use

rioviders who offered only screening tests which professionals had

decided were important, while not being in a position to respond to the health needs that the family considered important. As the EPSDT experience demoastrated, and as current efforts

a

273
(incorporated in CHAP legislative proposals) to replace EPSDT with a

program emphasizing continuity of care reflect, a program of mass

screening and followup is a poor substitute for access to ongoing,

comprehensive health care.

A particularly problematic aspect of mass screening has been and is the

matter of developmental assessment. On the one hand, early identification

of developmental problems can be extremely useful in ameliorating them

and in warding off secondary complications. On the other hand,

reconciling the complexity of development with the simplicity ofscreening

is enormously difficult. Screening, after all, uses quick, simple procedures

and tests capable of a pass-fail interpretation to identify children in need

of followup diagnostic tests or care.

The major strength of mass screening is to detect problems that can be

found and treated without reference to social, environmental or cultural

issues. Some problemsvision and hearing deficits. speech impairments

caused by physiological malformations, and some delays in motor

developmentlend themselves more readily than others to the mass

screening process. However, many developmental problemsespecially

those involving *he complex interaction of physiological, cultural, environmental, and emotional factorsare easy to misjudge in a quick screen.

One cannot accurately find the child who is hyperactive, disturbed, or

retarded by the administration of a quick, simple test. These problems call

for the clinician to pull together information from many different sources

(physical examination, health history, specific laboratory or other test,

observation of the child, talking w;th parents) obtained over a period of

time to determine whether a sign or symptom is transient and minor, or

one of lasting significance. Because of the difficulties e- --)untered in implementing the developmental assessment part . le LPSDT program, the Task Force on

Infants, Families, and Children of the President's Commission on Mental

Health and the Children's Defense Fund both concluded that developmental assessment should take place only in the context of a comprehensive health assessment (30. 31). The study of early screening programs undertaken as part of the

landmark report on "Categories. Labels, and Their Consequences,"

published in Futures of Children, also concluded that, "Routine health

and developmental care should provide the context for identifying

developmental difficulties of children." In recommending, improved

procedures for early identification of children at developmental risk in

Futures of Children. N. -::tiolas Hobbs writes. "Our primary concern is that

a substantial and sustained investment in screening programs may result

in delay or eyen indefinite postponement of the development of a

satisfactory health- program for the Nation's children" (32). The report's

recommendation. that screening for developmental difficulties should' be

provided in the routine delivery of health care by providers who can be

the source of followup treatment is coupled with the recognition that

screening programs are preferable to no contact with the health system,

and that more research is thus needed to determine-the usefulness of

274
various kinds of screening procedures and to deal with the problems of false positive and false negative findings which may emerge from

screening. The Panel believes that mass screening, especially for physical problems, can be an extremely useful supplement to comprehensive care_ Selected tests compatible with the techniques of mass screening, such as

those for anemia, vision, or hearing problems. could be performed at a few

specified intervals: for example, once during infancy, once before entering

elementary school, and once Wore entering junior high school. Such

screening could provide a check on the adequacy of the care being

provided to children and woul..1 assure that at least those conditions which one-shot screening can reliably detect would not go unnoticed_ More

important. such screening could identify children without regular health

care and could trigger efforts to link them to sources of continuing care. The Panel considers developmental assessment a key component of the health assessitent of every child. We also agree that developmental assessment of young children is not properly performed as part of a mass screening program, and should be carried out only in the context of a more comprehensive health or educational assessment. Policymakers and health care providers should base the design and operation of programs

that involve screening on the assumption that screening is .useful when

screening tests are performed (a) in the context of individual assessments and continuing care. (b) as a means of detecting a li-nited number of conditions characterized by simplicity of detection anc, followup. (c) as a way of linking children to an ongoing source of care. or (d) as a check on

the adequacy of care ch children are receivirg. Parents should be

involved at every stage o, :e process. State laws mandating schovi sc-reening programs should be modified where necessary, and implemented so as to assure that

t.:ley result in more than perfunctory and isolated screening tests_ School authorities should use the occasion of any physical examinations and vision and hearing screenings t1-1:y may be

required to do as an opportunity to identify those children without regular sources of primary care. and take the steps necessary to

link the children and their parents with such care sources. in the implementation of the EPSDT program, Federal and State Medicaid authorities should assure that all children with identifiedhealth problems actually receive diagnosis' and treatment. are-

, linked to a regular primary care source for subsequent services.- and that parents retain responsible roles in their children's

continuing care. The Board crnicalth Services Standards should review periodical-: ly what screening tests can usefully be provided as a suppleinent

to comprehensive care for all children, and which screening tests

(far example, lead poisoning and tuberculosis) should be provided

to -high-risk groups only; at what stages of life they should be given: and under what auspices :-ey are most effectively administered.

275
INPATIENT HOSPITAL CARE AND

EMERGENCY CARE

Psychosocial Aspects of Children's Hospitalization

Only a small fraction of children's illnesses or accidents require

inpatient hospital care for proper treatment. Despite the higher incidence

of acute conditions among children, children have proportionately fewer

hospitalizations and shorter hospital stays than adults. In 1978, just 6.9

percent of all children under 15 years of age (excluding newborns)

experienced a short-stay hospitalization. Others, suffering from congenital

defects, developmental disabilities, and chronic medical conditions require long-term followup care and frequent hospitalizations.

Effective care of the hospitalized child, to an even greater extent than

that of adults, requires careful attention to the child's physical and

psychological needs. Special organizatic -t1 arrangements are required to

ensure that these sets of needs are adeq -ly met. Illness alone may exact

a great emotional toll from the child anu An illness necessitating a

hospitalization becomes a major experience in the life of a child and

family. Many of the events which often accompany a hospitalization can

become additional traumas and sources of 'stress. These may include

separation from parents and siblings, disruption of daily routine,

immobility, anxiety abOut the medical encounter, and being poked,

prodded, and punctured, seemingly without end (33, 34):

Accidents and chronic or severe illnesses may leave psychological

scarring as well as physical disfiguration. Child psychiatrists, psychologists, social workers, clinical nurse specialkts, and child life specialists can

support and supplement the efforts of the parents, the primary care

provider, and the attending specialist in helping children to cope with

physical and emotional pain and distress. Parents can also be supported in

coping with their child's hospitalization, and in helping to reintegrate the

child into the family and to re-establish peer relationships after a lengthy

hospital stay. The key to successfz..1 management of all child health problems

requiring hospitalization is a synthesis of medical-surgical expertise with a

thorough application of principles of Child development. When psychosocial support systems are built into the delivery of care, physical recovery is

hastened, and' there are fewer psychological problems (35, 36). Attention

to the human side of hospital care is not just good medical practice; it is

also preventive medicine and it is cost effective (37, 38).

Hospitals have made great progress over the last two decades in

adapting' their environment to reflect a heightened understanding of the

developmental and psychosocial needs of children and families in health

care settings. A substantial number of hospitals have already taken the

steps which the Panel believes that all hospitals which offer pediatric care

should tan. The hospital's commitment to children should be reflected in

operating and staiIing policies, environment and design of space. and

philosophy of.care. To make hospitalization more humane and to improve

276
health outcomes, all hospitals which offer pediatric care that have not already done so should adopt the following policies: Encourage. support, and provide accommodations for parents to

stay with and participate in the care of their hospitalized child. Allow parents. and siblings as feasible. to visit hospitalized

childrer at any time. Make systematic provision to prepare children and their parents

for hospitalization of a child and for major medical or surgical procedures. Hospitals that do not at present have such arrangement:, are often

constrained by budrt and space corsiderations. The Panel believes that the costs of basic ps-chosocial care, including preadmission and other activities aimed at preparation and support of child and family, should be part of the hospital's per diem rate, reimbursable through third-party

payment in the same manner as are the costs of medical, surgical, nursing. and clinical dietary services. We also recommend that the presence of

these arrangements be considered in the process of determining hospital accreditation, and that, to the extent that they are reflected in the

allocation of space, hospital construction eligible for Federal loans be

required to make appropriate provision for the special needs of children

and their families.

- Recent hospital cost containment efforts have resulted in increasing

concern with establishing suitable utilization standards for hospital admissions and duration of hospital cr_re (39). While recognizing the

importance of fiscal responsibility, the quality of care should not be

compromised. "The need to hospitalize a child is dependent upon the

.special services which the child requires rather than upon the diagnosis"

(40). It is frequently necessary for a child's Welfare to hospitalize him or her because the home is inadequate for the circumstance of illness. It is necessary that auditors and PSRO's have a full understanding of this so

that hospital beds for children are used appropriately, in a social as well-as a medical context.

Criteria for length of hospital stay of children for particular types of surgery and illness should be established to elimina(e unnecessary

hospitalization, while including individual psychosocial needs as valid

criteria Mr lengthening or shortening a child's need for hospital care. For chronically ill and handicapped children, hospice care or other means of , care outside the hospital should be available, whenever possible, at home or in a setting closely approximating home.

Hospitalization for Childbirth

Major attention should also be given to the childbirth hospitAli7ation

experience. Educational and supportive programs for expectant parents can help foster better care_ An increasing number of hospitals with

obstetrical departments are today offeri- educationakprograms, profes- sional support, and the physical setting lor family.-centered newborn and

277
maternity care. This trend should be encouraged, and traditional practices

and routines should be reassessed in light of new knowledge and

experience; hospital staff should becoMe better informed about familycentered care (4 1 ). The Panel notes the need for sensitivity, and

accommodation wherever possible, to the physical, emotional, and social

needs and desires ofthe mother and her family or significant others during

the childbirth experience. We recommend that all hospitals that offer obstetric care, if they have

not already done so, adopt the following policies: Arrange for or sponsor

childbirth classes forprospective parents; permit the presence of the father

or other supportive person in labor rooms and at routine deliveries, and

enable t.:aem to play a supportive role in the childbirth; make it possible

for newborns to room in .with their mothers; make special arrangements to

maxi, size contact between newborns and parents, especially if the infant

requires intensive care; adopt a liberal visiting policy for children of

maternity patients. Even as more hospitals move toward providing more family - centered

obstetric care, there is and will continue to be a demand for childbirth in

free-standing birthing centers and at home. More than 75 hi -thing centers

are operating in the U.S. today, compared. to only 6 just 5 years ago.

Sixteen of these are free standing, and the rest are hospital based (42).

The Panel notes that these developments are consistent with its hopes

for a wider availability of family-centered care of all kinds, and believes

that all relevant institutions, inclucl.mg third-party payers, should adapt

their practices and policies to permit these alternatives to flourish to the

extent that they arc consistent with the provision of high-quality care.

Because this has become an issue of much debate, especially with regard

to free-standing birthing centers and home births, we strongly encourage

further research and data collection to allow assessment of different birth

practices with respect to safety, cost, quality of maternity care, and

optimal environment for family interaction and development.

Hospitalized Newborns

Low-birth-weight or otherwise handicapped newborns who, remain in

the hospital long after their birth are infants at very special risk.

Increasingly sophisticated technologies have saved a dramatically increasing number of low-birth-weight babies, many of whom must remain for

weeks. or even months, subjected to very abnormal environmental

conditions. including separation from parents. To the extent possible,

hospital practices should encourage contact between parents and the

infant. However, the opportunity for parents to have close col.- ict with

their infants in the hospital will often be limited, and they may have

trouble relating to them when they are ready for life at home- Training for

physicians and nurses in perinatal Care units should inculcate understanding of the psychosocial aspects of the risks these infants face, develop skills

to work with parents to minimize these risks, and encourage establishment

of strong linkages to sources of continuing psychological and social

supports for the families.

278 282
r

Emergency Cake

In many communities, one of the major deficits in child health care is

the lack of air -:ssible modern medical emerge icy services. Many children

come to emergency rooms each year because of accidents or injuries. Others come because they have no regular source of continuing care. Children may be referred to emergency rooms by their regular provider when they need care at night or on weekends. Mere than half the

emergency rooms in the country do not have a pedintrician on call (43).

Their staff has no special training in managing cht,ihood emergencies. They often unnecessarily separate a child from the parents at the very moment when support is most needed. The sights, sounds, equipment, and

treatments in an emergency room may frighten anyone: they can De overwhelming to a youne, child. who has little compreh'nsion of .leir beneficial purpose. All hospitals with erne, -icy rooms which .real children should assure

the availability of special f diatric equi-%ment and .-)f medical and nursing

staff knowledgeable in the case of critically ill or injured children. and in

the use of pediatric equipment: arrangements surrounding the provision of emergency care should reficct sc..!sitivity to the special needs of children.

Those that see a relatively large number of children (perhaps more than

5C in .a 24-hour period) should keep a separate physical area for children, away from the sights and sounds of the adult services nd should have

special personnel, especially nurses, available to Cai'c exclusively for children.

In addition, all hospital emergency rooms should establish mechanisms

for encouraging patients and their families, if they do not have a regular source of primary care, to select and use one and the extent consistent

with the preservation of privacy and confidentialityshould assure

systematic transmittal of medical information about emergency visits to

the patient's primary care provider. One good way to convey the necessary information from the emergency visit to the patient's primary care provider, is to give it to the patient or parent. This has the virtue of not only getting the record conveyed safely, but simultaneously serves to provide the patient and family with

important information.

REGIONALIZATION

Regionalization" in its broadest sense implies the ordering of health

resources and services within a given area to promote efficiency, avoid unnecessary duplication, improve access to health :are, achieve greater equity, enhance quality, and respond to consumer needs. During this century, there has been a gradual movement in the United States toward

regionalization of specialized, high-technology services in particular. While its potential has not always been realized in practice, the Panel believes the principle of regionalization has much to commend it. More

efforts are needed to assure children and pregnant women, and Lndeecl all Americans, access to specialized services; many of which must be

279
concentrated ir regional centers if the expensive equipment and facilities

ar -2. highly sk. led personnel associated with them are to be available.

Health planning legislation enacted by Congress in 1974 was designed

to promote a comprehensive assessment of population health needs within

a defined area and a more rational allocation of all available health

resources within each area. It has not. howeVer, as yet lived up to its

potential. Thus, our only extensive experience with regionalu-ation

remains concentrated in the area of specific components of care and

certain special-purpose institutions. Examples of the former, in the

maternal and child health sphere, include the Crippled Children's

program and perinatal care, while the latter is typified by children's

hospitals. The Crippled Children's Services program was established, under Title

V of the Social Security Act in 1935, to develop a system of care for

handicapped children and to treat conditions which might lead to

handicaps. Characteristics of this regionalized program include the

development of a State plan. case management from case finding through

diagnosis, treatment, and aftercare; an interdisciplinary approach; traveling clinics with personnel from tertiary centers; approved providers and

hospitals for specific services; prioi- 4uthorization for care; voluntary

organization and community support; and a Federal-State sharing of

costs. An important element has been the involvement of the private

provider sector in pla= ing, guidance, standard settir and the provision

of direct services. The greatest recent activity in regionalization has been in perinatal

services. As long ago as 1947, sick newborns were transferred from other

area hospitals to Children's Hospital in Denver. In the 1950's in New York

City, 16 premature centers were developed at both voluntary and

municipal hospitals to care for si-m.11 infants at risk who were born at over

70 hospitals with maternity services. The transport of these prematures

was handled by the Premature Transport Service of the New York City

Department of Healtt:. A knowledge explosion in perinatal physiology

and pathophysiology began in the 1960's. Criteria for establishing a

regional newborn center were developed at a Children's Bureau meeting

in 1966 and included: (1) approval and support of regulating agencies of

the State; (2) full-time nursing and medical personnel; (3) 24-hour

supporting services; (4) 24-hour consultation services; (5) transport

services; (6) life support monitoring equipment; (7) continuing education

program: and (8) Pill commitment of board of trustees, administration,

medical staff, and community. A major impetus to the regionalization of perinatal services was the

publication in 1976 of Toward Improving the Outcome of Pregnancy. by

the National March of Dimes Birth Defects Foundation. This document

contained recommendations for regionalization of perinatal services

developed by representatives of the American Academy of Family

Physicians, the American Acauemy of Pediatrics, the American College of

Obstetricians and Gyneco.ogists. and the American Medical Association.

Another important imps :us was the funding provided by the Robert

Wood Johnson Foundation to establish model perinatal centers and to

evaluate their impac.t.

280
Children's hospitals are important examples of regional institutions with a vital role to play in meeting the health needs of children. Not all

hospitals can or should provide all services to all children. Children's hospitals, which arc typically located in the central core of large metropolitan areas, serve as major referral centers for a wide geographic

area in the provision of specialized care for infants and children. Because

of their center -city locations, they are also usually deeply involved in providing primary care to medically underserved populations. and

generally have heavy teaching and research commitments as well. In general. regionalization of serviceswhether designed specifically

for children or to meet-designated health c're needs of individuals of all agesis most important for complex, often expensive services which

require special skills to provide appropriately. The list of such services will change over time, and as the capacity of more providers increases to

deliver a particular service without loss of quality and at an economical price, that service can be spread beyond its original regional center locus. Federal and State authorities, professional and voluntary organizations, hospitals. medical schools. and the public at large should actively support the development of selected regionalized health services for children, newborns, and pregnant women. Among the specific steps which should

be taken are. Further development of regionalized perinatal care networks to

assure all high--isk pregnant women and newborns access to

regionalized care systems Encouragement of the trend toward regionalized genetic services. including pooling of laboratory diagnostic facilities and the

availability of consultation Extension of regionalized networks to improve care for serious accidents (burns, trauma), certain chronic illnesses, and handicar - ping conditions, and to make mote widely available various other

forms of technologically demanding :medical care for seriously ill children

Support for regionalized backup and referral services for diagnosis and treatment of children with chronic illness, handicaps or psychosocial problems Development of better methods of communication between medical centers and primary care physicians so the latter can

provide appropriate followup services Support for improved regionalized ambulance services Enlarged public and private support of children's hospitals. in their role as regional resource centers and providers of specialized care.

REFERENCES AND NOTES

( / ) Average length of stay in hospital for chilcibirth. without complicaticms. declined from 4.1 days in

1968 to 3.3 days in 1978. U.S. Department of Health. Education.. and Welfare. National Center for

Health Statistics. National Hospital Discharge Survey. 1968; and U.S. Department of Health and

Human Services. National Center for Health Statistics. National :!ospital Discharge Survey. 1978.

(2) Larson. C. P. Efficiency of Pre-natal and Post-Partum Home Visit.- Podiathcs 66: 191-98, August

1980.

281

285
(3) Cowen. D. L.. G. A. Cu Hey. D. L. Hochstrasser, M. E. Briscoe. and G. W. Sorties. 'Impact of a

Rural Preventive Care Outreach Program on Children's Health." American loam's! of Public

Health 68. 471 47h. May 1978, (4) Gray, J. D.. C. A. (Jr. ue J. G. Dean. and C. H. Kemple. '"Prediction and Prevention of Child

Abuse." Chard Abuse and Neglec !: 45-58. 1977; and Seminars in Perinatology 3! 85-90. 1979.

(5) Lazar, I.. V. R. Hubbell. H. Murray. M. Roache. and J. Royce. The Persistence of Preschool -.1Tects.

Washington. D.C.: U.S. Government Printing Office. Administration for Children, Youth and

Families, 1977. For more inforrnatton on home visiting, see also. Chamberlin, R. W.. D. Olds. and

P. Dawson. -Improving the Delivery of Preventive Services to Mothers and Children.- Paper

presented at the Annual Meeting of the American Public Health Association. New York, N. fiber

4-8,1979, (6) In making there cost estimates. we assume a rate of 0.7 million high-risk births annually (including

all pregnant teenagers under 17 and all babies with moderate to severe congenital anomalies); and

an additional 1.9 million births each year to low-income families and all other families expecung

they first chile. We also assume an initial nurse visit to a high proportion of the target population,

and follonvup visits. including a mixture of nursc visits and nurse-supervised visits. to a smaller

proportion of the target group. The curse visits were estimated to cost 530 each. including

administrative overhead and travel, and the narse-supervised visits were assumed to oast $20 each.

Sources used in computing these costs estimates include the following: Kessner, D. et s./. Infant

Mortality: An Analysis by ..lartfrrial Risk. Institute of Medicine, Washington. D.C.. 1973; The

Robert Wood Johnson Foundation. Special Report. Regionalized Pim-Mate Services. Princeton,

1978: The Alan Guttniacher Institute; and Internal memoranda of the Department of Health

and Human Services.

I 7) Resler. D. A. and I. D. Goldberg. -The D. Facto U.S. Mental Health Services System. A Public

Health Perspective.- Archives of General Psychiatry 35: 685-693. June 1978.

(8) Caplan, G. An Approach to Community Mental Health. New York: (}rune and Stratton. 1961.

(9) The R. W. Johnson Foundation and the W. T. Grant Foundation have been particularly active in

these efforts.

( :0) Startield. B.. E. Gross. M. Wood, R. Pantell. Allen. I. B. Gordon. P. Mullin. R. Drachmae, and

H. Katz. "Psychosocial and Psychosomatic Diagnosis in Primary Care of Children.- Pediatrics. in

press.

( // ) American Academy of Pediatncs_ The Future of Pediatric Education. A Report by the Task Force

ore Pediatric Education. Evanston. !II.: American Academy of Pediatricians, 1977.

(12) Lawrence. R. -The Primary Care Physician: Mental Health Skills.- In Mental Health Services in

Primary Care Settings.- Report of a Conference. April Z 3. 1979. Vol. I. N1MH Series DN2. pp.

109-.1 I8. Washington. D.C.: U.S. Government Printing Office. DH HS Pub. No. (ADM) 80-995.

1980.

(13) Pakula. L. -Delivery of Mental Health Services in a Fee-for-Service Pediatric Practice.- In Mental

Health Services in General Health C.-re. Institute of Medicine. Washington. D.C.: National

Academy of Sciences. 1979. pp. 59-63.

(14) Lefkowitz. B, an; D Andrulis. "The Organization of Primary Health and Health-Related

Preventive. Psycaosocial. and Support Services for Children and Pregnant Women.- In Better

Health tar Or-r Children: A National Strategy. Vol. IV. Washington, D.C.: U.S.. Government

Printing Offic.e. 1 980.

(15) Burns. 8. -A Neighborhood Health Center Model of Integrated and Linked Healtn and Mental

Health Services.- In Mental Health Services 77 General Health Care. pp. 51 -58. Washington. D.C.:

Institute of Medicine. National Acaderhy of Sciences, 1979.

(16 ) Boras. J. B. Burns. A. .Ince.bson, L. 'Macht. R. Morrill and E. Wilson_ "Neighborhood Health

Centers as Providers of Coordinated Mental Health Care." In Mental Health Services in General

Health Care. Part ::.. Washington. D.C.: National Academy of Sciences. 1979.

17) Carpenter. J. and L. Towle. "A Follow-up Study on Referral from an Internist to Outside and

Inside Mental Health Services.- Unpublished manuscript, 1974.

(11() Jones. K. and T. Vischs. "Impact of Alcohoi. Drug Abuse and Mental Health Treatment on

Medical Care Utilization. A Review of the Research Literature." Medical Care 17 (Supplement).

December 1979.

- (19; Novack. A. E. Brornet. T. K. Neill. R. Abramovitz. and S. Storch. -Chlidren's Mental Health

Services in an Inner City Neighborhood.. 1: A 3-Year Epidemiological Study.- American Journal of

Public Health 65: 133-138. February 1975.

/20) Neill. T. K., A. Novack. F. Bromet. and R. Abramovitz. -Utilization Patterns and Presenting

Problems in an Inner City Child Meni-I Kealth Service.- Journal of the American Academy of

Child Psychiatry 16 2E5-295. Spring 1-977.

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(21) 11einiai J. "Ninghborbood Health Centers as Prerea lets of Primary Mental tilealth C.27.3/14ilew

England Journal of Miadicuse 295: 140-145, 1976.

(22) Macht. L "Nesghborbosxi Health CentersPerspectives on Opportunity for ,,,tmprehensive

Ambulatory Health Care." New England Journal of Medicine 292: 59:-92. 1975.E

(23) kobiass. L mad H. Ya braes. "Antisocial Children as Adults." In Families Today. Vol. II, pp.

487-498. National Institute of Mental Health. Science Monographs, U.S. Department of Health. Education. and Welfare. Washington. P.C.: U.S. Government Printing Office. DHEW Pub. No.

(ADM) 79-815. 1979. (24) President's Conimission on/Mental Health. .Report to the President from the President's

Cometuasion o in Mental Heidi& Vol. I. Washington, D.C.: US. dovernment Printing °face. 1978.

(25) -A Treatment and Education Program for Emotionally Disturbed Women and Their Young

Children." Hospital and Community Psychiatry 31, October Tso.

(26) Alan Guttntacher Inititute. Unpublished data. 1980.

(27) U.S Department or Health.. Education. and Welfare. Healthy Clajdren: Children's Oral Health.

Public Health Service. Washington. D.C.: U.S Government Printing Office. DHEW Pub. No.

(PHS) 80- 50L36. May 1980.

(2$) Institute of Medicine. Public Policy Options for Better Dental Health. Washington. DC.: National

Academy of Sciences, October 1980.

(29) U.S. Department of Health. Echicaltica. and WeliVe. National Center for Health Statistics.

unpublished data frorp,..the National Health interview Survey. 1978.

(30) Children's Defense grind. EPSDT: Does It Spell Health iare for Poor Children? Washington.

D.C.: Children's Defense Fund, 1977.

(31) The President's Commission on .Mental Health Task Panel Reports. Vol II!. Washington. D.C.:

U.S. Government Printing Office.. 1970. The President's Commission on Mental Health itself.

however, did recommend twat. *-A periodic. comprehensive, developmental assessment be available

to all children, with consent of parents and with maximal parental involvement in all stages of the

process.

(32) Hobbs_ N. The Fu.-- : .sildren: Categories. Labels, and Their Consequences. Jossey-Bass. 1t,4%,....,

1975.

(33) Robertson. J. Young tAiik.1 in Hospital. Liar don. Tavistock Publications, 1970.

(34) Skipper. J. K. and R. C. Leonard. -Children. Stress, and Hospitalization: A Field Experiment."

Journal of Health and Social Behavior 9: 275, 1965.

(35) Wolfer. J. A. and M. A. Visjastainer. -Pediatric Surgica: Patients and Parente' Stress Responses and

Adjustments as a Function of Psychologic Preparation and Stress Point Nursing Care." Nursing

Research 24: 244.. 255. July-August 1988'

(36) Sohlesusger. H.. E. Mumford. and G. Glass. the Effects of Psychological Intervention on Recovery

from Surgesy." N H H Contract No. 278-71N6041;979.

(37) Douglas. J. W. B. "Early Hczspital AdmissionsInd Later Disturbances of Behavior and Learning.-

Journal of Developer-rend!' Medicine and Child Neurology 17: 456-480. 1975.

(38) Quinton, D. and M. Rutter. "Early Hospital Admissions and Later Disturbances of Behavior.- An

4 attemptedirreplication Douglas' Findings. Journal of Developmental Medicine and Chili.:

Neurology 18: 444459. 1976.

(35fttaskLorce on Guidelines of Vie. "PSRO's and Norms of Caie.- Journal of the American Medical

tion- 229: '166. 1974.

(40) North. A. gr., Jr. -When Should a Child be in the Hospital?" Pediat 5" Zs- 05: 540-543, April 1976.

(41) Kesel. S. 'S-. J. P. Rodiks, and I. M. Ciishner. "A Child's Beginning." In Better Health for Our

Children: A National Strategy. Vol IV. Washington. D.C.: U.S. Government Printing Office. 1981.

(42) Pragmatics. Inc. -ediegailives in Obstetric Services for Indiani.- F>4.ared for Blue Cross and Blue

Shield of Indiana.

(43) Rothberg, M. -Is There a National Conspiracy Again. -3 Children7- In Human Needs and Political

Realities. Presentation at the Thirteenth Annual Conference: of the Association for the Care of

Children in Hospitals. Washington. D.C.. 1978.

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CHAPTER 8

ORGANIZING SERVICES FOR

SELECTED POPULATIONS

There are four special populations of children with health problems that present a unique challenge for the effective organization of services. These

include adolescents; chronically impaired children; children in foster care or other out-of-home placements; and children with serious accts problems as a result of language, cultural, and lifestyle variations from the mainstream of society. In this last category arc the children of migrants and seasonal farm workers, Native = Americans, refugees, and illegal

immigrants.

ADOLEgtErrrs

In reviewing the problems faced by certain special groups in obtaining

adequate and appropriate health services, the Panel's attention was

frequently directed to the unmet needs of the Nation's adolescentsthose young people approximately 12-17 years of age who, in this society, occupy a special and often stressful life stage between the dependency of childhood and the independence of adult status. Despite the prominent position of adolescents in our youth-oriented society, the development and deployment of health services reflects inadequate attention to this

group. Adolescents share with other underserved groups inadequate access to needed health services. This is true not only for services important to all age groups, but also for those of particular salience to teenagers, such as

family planning, drug and alcohol abuse prevention, and varicus forms of counseling. Moreover, to the extent that health services are available to

teens, they almost always tend to be oriented more to problems rather

than normal growth and development. There are a variety of reasons for the failure of the health system to

address the needs of adolescents adequately. Certainly a major one is that

in a strictly medical sense, adolescents are healthy. Their death and illness rates are lower than for adults and infantsthe illnesses and lifethreatening conditions of infancy and young childhood are generally past, and the chronic disabling conditions of adulthood are not yet !manifest_ To a greater extent than for other age groups, their health problems

tend to be based more in emotional and psychological dimensions than in

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physiological ones. Because. as noted earlier in this report, the current health system does not deal effectively with the psychological, social, and behavioral aspects of health. it is not surprising that adolescent health

needs are often ill-served. The emphasis of third-party reimbursement on

disease treatment and care rather than preventive services and counseling. which are highly relevant to adolescent needs, limits the effectiveness of

the health system in helping adolescents. So does inadequate information

about the most effective ways to design services for adolescents; a lack of consensus about the appropriate division, of responsibility in this area between the sch.->ols and the health system; and a lack of clarity about which medical specialities are responsible for adolescent care. The Panel believes that the relative neglect of the health service needs of adolescents at present is neither defensible nor- necessary. We recommend

that policyrnakers and health system leaders give increased attention to

the health needs of adolescent: in -r !sting health service systems, and that both public and private sectors intensify their efforts to develop and refine new models cf organizing services to meet the special health needs of this

important life period. Health services for adolescents should be designed with two key factors

in mind. The first is the signi:Icance for health of a variety of behaviors characteristic of adolescence, the second is the various attitudes and

preferences of this age group. Both of these factors are taken up in detail

in chapter 3. As discussed there, one of the great challenges in meeting the health

needs of adolescents is to recognize the prominence of personal behavior

issues in the range of health problems affecting this group. This is not to

say, of course, that the full range of medical problems are absent in this period. Like younger children and adults, adolescents have important medical problemscardiovlscuiar diseases (including hypertension), dia- betes, malignant neoplasms, respiratory infections, dental diseases, hearing and vision disorders, and other problems. Adolescents are also not

immune to the burdens of physical and emotional handicaps and chronic

illnesses. But, as a group, they are unique in the extent to which healt.a- related behaviors are of overriding significance for both short-term and

long-term health status. The way in which health services for adolescents are organized and

provided must also be in tune with a number of preferences and attitudes characteristic of this life period, such as the significance of peer

relationships. Attitudes, values, and behaviors are likely to be modeled,on

those of the social group. Adolescents are generally immersed in the present. often lack a tangible sense of future consequences or possibilities. and typically feel that, even if they are not quite immortal and

indestructible, they certainly won't be the ones to be involved in an

accident, get gonorrhea. or become pregnant. 'V 1.n and if they seek help

from health personnel, teachers, religious a.dviers, or any other source, they are intensely concerned that their privacy and confidentiality be

respected. For the health system, anc indeed all institutions, it is a special challenge to respect and accommodate the teenager's desire for privacy

and confidentiality in a manner that simultarier,usly strengthens and

supports parental involvement with teerage children.

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Desirable Ible Service Chiracteristics

Given these various characteristics of adolescence, the Panel has

identified certain attributes that should be incorporated into the design of

health services for this age group. These pertain to outreach, education

and counseling, privacy and confidentiality, and financial barriers.

Outreach

Adolescents are often unfamiliar with the health care system and

cannot be effectively reached through their families alone. Even more

than adults, they generally require special outreach efforts tcv acquaint

them with the health system and to get them to use services appropriately. Outreach systems for adolescents should be provided through the settings where they spend much of their timein school, youth centers, shopping malls, and the like; through youth-oriented media, and through health

facilities such as family planning or drug abuse clinics which may serve

some of their peers.

Education and Counseling

The importance of education services that occur in schools and other

community settings is described in some depth in chapter 3. Here we

would only add that once an adolescent comes in contact with the health

system, educational efforts should continue to constitute a central

component of the health services offered. Such education efforts should be

developmentally appropriate and, as with community-based health education for adolescents, use materials that are suited to the values and

preferences of adolescentsand build, as appropriate, on the; importance of

peer influences. Related to education, and of equal importance in organizing services for adolescents, is a strong capacity for counseling services. Indeed, in areas such as family planning, the counseling components of care are of equal importance to whatever medical services are delivered. Given the many vulnerabilities of adolescents, and, their many questions and concerns about a number of health matters, counseling should, like education, be a

major aspect of most adolescent health services, especially family planning

services and others related to sexual activity. The general importance of

counseling services is described in more detail in chapter 5_

Privacy and Confidentiality

Privacy and confidentiality are paramount concerns of young people and must be so recognized by the health system. As a general principle health servicesparticularly family planning and other services related to

sexual activityshould legally be available to adolescents without parental consent and with full assurance of privacy and cohlidentiality. This does not mean, of course, that parents and families should be

excluded from the health care decisions of adolescents_ Every effort should be made to encourage young people, and especially younger

287 290
adolescents, to communicate with their families about any care they are

receiving. However, requirements of parental involvemer: must not be permitted to become a deterrent to the receipt of needed services, nor

should receipt of services be contingent upon parental consent. Outreach

messages must make clear that help is available em a ccnfidential basis:

information must be held confidential and released only with the young

person's consent: and confidentiality must be protected in establishing

fees and billing for services_

lFinarNcial Barriers

Most adolescents have limited access to money, especially money they

can spend as they wish without an accounting to their parents. Thus, even

when they are guaranteed confidentiality in obtaining health services, they

may be deterred from seeking needed services by financial constraints.

The Panel's general view that financial barriers shculd be reduced or

eliminated to increase the availability of needed i -alth services holds

especially true for adolescents. Services to this populationespecially

those often sought independently such as venereal dis,.:.-tce diagnosis and

treatment. family planning. pregnancy testing. and crisis counseling

should be available either free or at reduced cost, using a sliding fee scale

or similar structure. Another important consideration in designing health services for

adolescents pertains to the personnel who come in direct contact with the

teenagers seeking care or information. Health services designed for

adolescents must place a high premium on using staff who are sympathetic

to the needs and styles of teenagers ard communicate well with young people. This viewall but self-evident on the recently been

supported by a study commissioned by DHHS :rich indicated that

adolescents were primarily concerned with .the presence of nonjudgmental, sympathetic personnel, and with privacy (I).

Organizational Models

As for all age groups, health services for adolescents can be organized in

a variety of ways, even when incorporating all the system attributes noted

directly above_ The traditional medical mode of health care delivery

remains a major source of care for adolescents with overt health problems.

This systemtypically including private physicians' offices, general ambulatory facilities, inpatient hospital units, and the likeis most

familiar to parents and indeed many health professionals_ However, its

value for adolescent health is limited because in general a teenager is ill

before contact is made, thereby restricting the number of adolescents

included in the system because morbidity is low in this age period. This

disease orientation also limits its value in the broader preventive

education and counseling activities so important to adolescents.

Services to adolescents at present include various categorical programs

such as teen family planning clinics and drug or alcohol abuse programs

targeted at teenagers. It is the Panel's view that in some instances, such

288
categorical, programs are appropriate and efficacious. Family planning

services for teens are a good example, responding to a specific need with a

specialized program. All such programs, however, need strong referral

networks so that adolescents may be put in touch with other services that

they need. In addition to categorical programs, the Panel sees great value in a multiservice team approach to health care that addresses basic issues of adolescent development such as risk-taking behavior. Health-compromising behaviors in adolescents tend to occur simultaneously; for example, adolescents who smoke arc more likely to experiment with alcohol than

those who do not smoke. An overall tendency toward experimentation

that characterizes adolescence is not specific to any single behavior, but

underlies almost all the health-compromising behaviors considered here. An example of an integrated, multiservice approach to adolescent needs

is The Door in New York City. which combines in one place a wide

variety of services for adolescentsnot only health, but also recreational, vocational, and other services (2). Bemuse so many types of services are offered in such multiservice models, the problems of funding (usually

"provided categorically) can be especially difficult. Each service of the

facility may be supported or regulated by different sources who themselves require different reporting, licensing, or monitoring procedures. The

lack of health professionals trained in such interdisciplinary approaches

may also create staffing problems. Services to adolescents are also delivered in non-health care settings.

Certain institutional settings are discussed later in this chapter. Interest is currently high in using the schools as delivery sites for health serviceszto

adolescents and younger children. In some communities, schools are a

logical site for providing both health services and health education.

In reviewing the many models currently providing health services to

adolescents, the Panel was struck by the indisputable value of promoting a

range of systems through which an individual may obtain the services he

or she needs.. So, as for children and pregnant women generally, the Panel recommends that policymakers, public and private third-party payers, and

other decisionmakers support a variety of models for providing services to

adolescents to accommodate the multiple and varied needs of this group

and to present diverse opportunities to establish connections to the health

care system. We emphasize that it is not necessary to establish whole new systems of

care for adolescents. Indeed, it is the Panel's strong view that the cause of

improved adolescent health would be significantly advanced if existing

health services systems and programs w. re to pay increased attention to

this special life stage and orga=r- dz. e services for this group appropriately.

For example: Acute care hospitals with a significant number of adolescent

patients should organize adolescent units as distinct from pediat- ric and adult services, and provide such units with counseling, recreational, and related support services appropriate to adolc...-

cents.

Family planning clinics that serve significant numbers of adolescents should provide special clinic sessions for teenagers that

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emphasize education or counseling, arc sensitive to other needs

r.dolescents might bring such as drug problems, and include a

vigorous outreach program to area adolescents. Private physicians.. especially pediatricians, caring for adolescents

should ensure that their routine patient evaluation procedures for

teenagers include not only a medical history and a physical exam, but also a review of pertinent health habits, peer and family

relationships and related behavioral issues. Systems should be

available for referring adolescents, as appropriate, to other needed

services such as mental health services or drug abuse services.

And in all such settings, sensitivity to adolescent needsmanifested, for

example. by placing services at times and locations suitable for school

schedules and staffing services with personnel specially trained or suited

to communicate well with adolescentsmay well be more important in

designing successful and useful services for teenagers than the particular

organizational delivery model chosen. In the public sector two existing programsEPSDT and Title Vare in

place and able to lielp with a variety of adolescent health needs but in

general have failed to do so. The EPSDT program is designed to provide

regular screening and health treatment for children and youth under 21

who are Medicaid eligible, but in practice the program has been oriented

to infants and small children. The picture is not much different in the Title

V program, where young people up to the age of 21 are eligible for a broad

range of services but the focus is on the very young. Of the relatively small

portion of adolescents receiving any care finances by Title V, considerably more an one-half are seen only for pregnancy-related care.

Accordingly, the Panel recommends that the leaders of EPSDT and Title

V, at both the State and Federal levels, review and revise program policies and expenditures to ensure that adolescents arc provided with an

adequate portion of the total services administered by each program, that

where possible a broad range of adolescent needs are addressed by such

programs. and that Congress periodically review the extent to which the multiple health service needs of adolescents are included in program

priorities. In particular: EPSDT should increase outreach efforts to adolescents in such

programs as Job Corps, where Medicaid-EPSDT eligible adolescents are likely to be found; ensure that the assessments

performed on adolescents are developmentally appropriate; fund

demonstration projects to develop ways to involve more adolescents in - EPSDT; and widely disseminate the findings and

techniques of successful demonstrations. 4tspecially to other

EPSDT programs. State Title V agencies. with the encouragement and leadership of

the Federal Government, should ensure that their needs assessments and State plans include specific attention to adolescents; increase their training programs to help improve the skills and

competencies of service providers who care foi adolescents; and

review their direct service programs to ensure that adolescents are

adequately represented and that adol -ent services are not

confined to pregnancy-related care only.

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The health planning systems at the State level in particular should

assess the extent to which EPSDT, Title V, and other programs are giving adequate attention to adolescents. Although the Panel believes that such changes in existing systems will do much to advance adoleScent health, it is also true that to reach some

teenagers, and to address some special problems, new systems may need

to be established. For example, age-specific, comprehensive, multiservice centers have demonstrated their attractiveness to certain teenagers who might-well remain totally without health services were it not for this type of care setting. Inner city youth, particularly those disaffected and

alienated, may well use only such a modelto the exclusion of other systems, such as hospital-based clinicsno matter how much these

systems try to reorient their programs and procedures to suit adolescents. To encourage the development and expansion of such comprehensive

services to adolescents, the Panel recommends that public and pr - funding sources increase their support of multiservice, single site systems of care fir adolescents, undertake administrative changes to ease the pooling of funds typically drawn from several categorical sources,' and

develop common forms for reporting expenditures, program activities, and

related factors. Such expanded support should include a strong evaluation_

component to refine understanding of the strengths and limitations of this model for serving adolescents. New systems of care are also needed to assist pregnant teenagers and

teenaged parents with their multiple health, social, educational, and

occupational challenges. The establishment of the Office of Adolescent Pregnancy Programs in DH HS symbolizes Federal recognition of this need, but, as we discuss in chapter 11, the placement of this,prograrn in

the office of the Assistant Secretary for Health may havemited the

benefit of this program. Eveil in communities where all needed services for such adolescents exist, only the most extraordinarily resourceful teenager can "package" them appropriately. Although there is no single way to ease

this service _coordination problem, which certainly includes the health

system but goes-- well beyond it, the Panel recommends that each

community designate a lead agent), to coordinate the broad array of services needed by pregnant adolescents and teenaged parents. Similarly, all- those charged with maternal and child health planning at the State

level should review the extent to which communities have met their

responsibility.

CHRONICALLY IMPAIRED CHILDREN

Over 10 million children in the United States suffer from some type of chronic impairment (3, 4). Although the majority of their medical needs are met satisfactorily, and often extremely well met, the fragmented nature of our health care delivery system continues to leave some serious issues untended and often places substantial burdens on the very people who can

least sustain them. In particular, children with chronic disease, physical and sensory handicaps, mental retardation_ and emotional disturbances

(1) continue to find it difficult to obtain comprehensive health care,. (2)

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often suffer severe financial privation. (3) are frequently ostracized or

segregated from peers and society in general. and finally. (4) lack support

when they must undergo trying personal and interpersonal stress. Large

sums of money arc spent each year at the Federal, State. and local level

for services to the handicapped, yet serious organizational and delivery

problems remain. A number of the problems arise from procedures and

policies which should be reassessed and, in many cases, altered to improve

the quality of life of childreri with handicaps or in chronic poor health.

This section begins with a delineation of issues specific to each of four

groups of disabled childrenthose with chronic disease, those with

physical and sensory disabilities, those with mental retardation and those

with serious emotional disturbance. A discussion of the problems facing

children who have multiple problems follows. The final two sections

outline a number of general issues and provide specific recommendations

addressing the problems for individual children and their families and for

children with chronic illness and disability in general.

Children with Threatening or Chronic Diseases

It is difficult to obtain definite figures for the number of children in the

United States with life-threatening and chronically disabling disorders.

Estimates range as high as 3 million children (5). Whatever the precise

figure. s- bstantial numbers are involved and many of their lives are filled

with suffering. Children with chronic disease may spend up to several weeks a year in the hospital. lose numerous days from school, face

restrictions on their outside activities, and have to adjust their lives around

rigid treatment regimens and schedules. The composition of the chronically ili child population is changing.

Although advances in prevention have virtually eradicated or significantly

reduced some disorders (e.g., rheumatic heart disease, paralytic poliomyelitis, tuberculosis, and other infectious disc...ses), new diagnostic and

therapeutic techniques have led to the recognition and management of a

variety of diseases that previously caused death in infancy or early

childhood. The result ;s an increased populaitern of chronically ill children.

A partial list of these illnesses includes: some forms of congenital

heart disease; dialysis-dependent renal diseases; many newly identified

endocrine and metabolic disorders; certain immune disorders: various

congenital and acquired neurological diseases: and treated malignancies.

Corollary to the changing nature of chronic disease is its changing age

distribution. As therapy becomes more advanced and successful. more

and more chronically ill children are living into adolescence. Hospitals are

starting to see a shirt in patient population with increasing numbers of

beds used by chronically ill adolescents and young adults. Retraining of

staff and rethinking of hospital policies are necessary in many instances.

Furthermore. pediatricians. specialty clinics and general practitioners who

continue to foilow their chronically ill patients into adolescence are

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finding that the problems their pittients confront them with often concern

_ such nontraditional areas as sexuality, birth control and vocational

placement. The increased survival of chronically ill youngsters is-a direct result of

and tribute to the massive mobilization of support for the development of

tertiary care centers over the past two decades, including construction of

new facilities, training personnel, and designing new equipment. It is in

- this high-technology sector of mech.-al care that children with lifethreatening and chronic diseases typically receive their specialty services. What seems to be lacking at this time is the community backup supports

for the less highly visible needs- of these children. Unfortunately, the

enthusiasm to provide specialized medical services to ill children has not been matched by proportionate dedication to other needs. The Panel

perceives as gaps in the provision of services the following important community health supports: home health services, other alternatives to

hospitalization, prevention and preventive maintenance (including pri- mary and dental care), respite services and -other family support services. In general, most professionals dealing with chronically ill children agree

that for the sake of the child, hospitalization should be kept to a minimum. The current costs of hospitalization make this an attractive economic notion as well. Many efficacious outpatient and home-based services have been developed. but these services are often not available to chronically ill

children because third-party payments are not available. Consequently, physicians are forced to hospitalize children for diagnostic studies, blood

transfusions, and total parenteral nutrition to spare parents the expense. It

is ironic that expensive hospital bills will be paid by insurance plans while payment for cost-seving services such as outpatient and home care is

required of families in out-of-pocket payments. Youngsters with chronic disease are also often hospitalized bacause no other residence is available while they are receiving extensive treatment

such as radiation or chemotherapy. Although these procedures may take

only a few minutes a day, the child must often spend long hour& in a

hospital bed and a hospital environment. Every effort should be made to

develop nearby homelike settings (or hospice centers) where children can

be monitored, but spend a more normal day. Efforts in this direction are

starting, particularly through private charitable organizations, and should

be supported and expanded. Children with chronic disease require primary care in addition to

special services. For a variety of reasons this care may be lacking or not well coordinated with other aspects of their health program. Preventive

health maintenance is often not covered by third-party payers, and some

programs serving chronically ill ct-- ildren are not designed to include primary care. Much of the difficulty, however, stems from simple lack of

communication among providers and between patients and providers. Parents often think that when a child sees "the doctor" he or she is getting

comprehensive services. On the other hand, "the doctor" of the chronically ill child is often a specialist who may assume that the child is receiving primary care services elsewhere (6). Although this situation is not

universal, it occurs frequently and can be ameliorated by clear specifica293
tion of provider roles. As a system of care is planned. program designers should always consider the coordination of primary care needs of thipsechildren with their specialized needs. This becomes all the more important

as the child returns to amore stable- state and can be cared for by health

care professic nals in his or her community. -Another aspect of care that is sometimes overlooked for handicapped

children is dental health. This subject is addressed in chapter 5. Finally, support services to help parents acquire the special knowledge they need

about diets, medicatidn, and financial resources are not always readily

available.

Some programs funded through State Crippled Children's Services and

the. Bureau of Community Health Services have been designed to meet the comprehensive health care needs outlined above. Model programs for

cystic fibrosis and hemophilia A and B have been successful in reducing

hospitalizations, prolonging the life span, and improving the quality of life

of children with these serious illnesses. However, because the pattern of

Federal programming has been piecemeal and categorical, there are wide

disparities in the types of health programs available to children with

different chronic conditions. The Panel re-commends that as modifications

are made at the Federal, State, and local levels for chronically ill children, planners review the experience of model programs and adjust for needs such as home care, hospice placement, coordination of specialty and

primary care, and provision of family supports. The financial burden on families with chronically ill children is often a

significant additional. concern, with much of the cost being "hidden." Although the major health care bills for hospitalization, surgical procedures, medicines and the like may be covered by private insurance or by a

public program, there may be heavy travel, telephone, and lodging costs

that are never reimbursed. Furthermore, parents may lose weeks of work

for which they cannot claim compensation. These costs may throw a

family over the financial brink ( 7). The worst situation occurs, obviously,

for the family without any source of third-party payment for whom

hospital and clinic fees may represent clearly impossible expenses and

stand as barriers to care.

In addition to other difficulties, children with chronic conditions may

suffer from societal intolerance. This problem is being alleviated by new

community arrangements for these children undertaken in response to Federal initiatives such as P.L. 94-142 (the Education for All Handicapped Children Act) and other legislation for the handicapped. The

greater problem for children with chronic illness, however, may be their

own self-acceptance, their relationships with peers, and the emotional

stress which the uncertainty of their disease place ; on them and their

families. Children with chronic disease are continually faced with the actuality or the prospect of pain and suffering, and with the fear of hospitalization, functional disability, and even death. These very real problems are, of course, exacerbated in adolescence as the _youngsters begin to search for independence and group id arnpercd by dependence on treatment and medicine and th own .36nse of being different, such children may find that growth d development comes

only with real difficulty.

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Children with Physical and Sensory -Handicaps

A Rand Corporation report has estimated that 191900 children in the

United States are visually impaired, 490,000 hearin* impaired, 2,200,000

speech impaired, 1,676;000 crippled or other health impaired, and 50,000

multiply handicapped (3). These numbers fit the estimate of others that

"physically- disabled" children constitute one-half to two percent of the

childhood population. Physically diiabled children share many of the

problems of chronically ill children and the Panel feels they would benefit

from a number-of modifications in the programs designed for them.

These children need coordinated health care -and help with life

planning. Unless problems are recognized early and intervention begun,

the child's performance and ability to learn and develop may be adversely

affected. If there is a Fearing problem, there may be a delay in speech; if

there is a vision problem, there may be a problem with intellectual

development; if there is .a speech diffigulty, there may be a delay-in social development. In the past, many problems were not identified until children entered

school. This was because many preschool youngsters received few

developmental examinations between the completion of their immunizations and the time they began school, and because there was no way to

identify, at birth or shortly thereafter, the children who were at risk for being disabled. This situation has changed. The great majority of infants born at high

risk now receive care in the high-risk nursery system. that has been

developed throughout the Nation, and studies have identified the criteria

needed to recognize those high-risk infants likely to have developmental problems. Thus, for the first time, children with physical and sensory

deficits can be identified at a very early age and intervention programs can be promptly initiated. Because many physical and sensory handicaps interfere with a child's overall ability to function at home and at school, current theory suggests

that the best approach to management is through collaboration between

the family and a community team of physicians, nurses, educators, physical therapists, occupational therapists, speech and hearing personnel, nutritionists, and psychologise. In practice, three serious roadblocks hamper the smooth operation of these teams. First, evaluation personnel

. (particularly those in academic centers) often operate in a vacuum with

little reference to the child's actual home and school setting This is a

difficult problem because the concentration of professional expertise to

cA eate a team often requires that the evaluation take place in a center

(usually in a city) where team members may know very little about the

resources actually available to the child in his or her own community. The creation of community teams would ameliorate many of the coordination

problems and allow closer connection between evaluation and treatment. The large centers could still serve a major consultatie and training

function and could, in fact, function as the community team for their

immediate area. A second difficulty is that leadership of the evaluati.,a team is often

lacking and even though proper tests have been carried out, coordination

295
and follow-through arc often left in the air. This absence of leadership is particularly marked when the child liras a variety of physical and

functional problems. A major Aced for an ombudsman or advocate is

evident and many feel that Ikediatricians and other primary care providers should be prepared to fill this- void for physically handicapped children

(8). Although most primary care providers have neither the training. resources, nor time to handle all the complex problems of physically handicapped children, they can become active members of a community

team. \availing themselves and their patients of advanced diagnostic and

treatment programs_ as well as the services of a variety of other professionals including.. for example, occupational therapists. physkal

therapists. and speech and hearing specialists. Within the team framework

the primary care provider can maintain an active role as advocate,

interpreter. and coordinatdr. In order to learn how to function in a team and to fulfill the coordinator

role competently. pediatricians, family practitioners, and nurses may need

continued training and updating. This training :should contain information about resources with particular emphasis on programs for handicapped children available through the schools under P.L. 94-142 as well

as through other public agencies. The efforts which have begun in this

regard by the American Academy of Pediatrics and Federal education

authorities should continue.

One final problem currently interfering with tkic full and efficient use of

teams is the increasing number of services tied to one of another

individualized treatment plan. It is currently' possible for a given child to

undergo as many as five or six individualized evaluations with different

teams in order for services to be provided under P.L. 94-142, the Early

and Periodic Screening Diagnosis and Treatment program (EPSDT). Title

XX, Developmental Disabilities, Crippled Children's Services, and the

Disibled Children's program under Supplemental Security Income.

Program regulations should be changed so..that the same evaluation would

satisfy all accounting and bureaucratic needs and so that all agencies

involved with a handicapped child (e.g., school, hospital. mental health

center) know which services the child is receiving. Although this might

place a slightly heavier burden on the evaluators. it would spare the child

and family multiple taxing and stressful procedures and would allow a

truly comprehensive program to be developed for each child.

Just as there are hidden costs for the families of children with chronic

diseas.: s.o are there for the physically handicapped. If a child is in a

wheek.nair. the corridors of his or her home may have to be widened. If he

or she needs braces, the parents may have. to pay out of pocket for the

equipmeni and then bill their insurance companyonly to find that many

such expenses are not actually covered. A child with a hearing aid may

require multiple visits for adjustment,. each meaning loss of work time fora parent as well as transportation and )t.her costs. Although a wealthy

family .may be able to absorb these expenses readily. others cannot. The psychological problems of physically disabled children often stem

from their conscious and unconscious realization that they cannot perform as other children do. Just as chrtucally all children require ongoing mental health support. physically hIndicapped children often

296

29:1
need buoying and encouragment to get them through the exceedingly

difficult task,of growing up. Major improvements in the health care and the everyday experiences of physically handicapped individuals have come about in the past two

decades. The Panel feels that it is essential that the good work that has begun continue and that every effort be made to coordinate activities for

these ch. ldrej at the community level.

Children with Mental Retardation

Two to three million children in the United States are considered to be

mentally retarded. Definitions of retardation vary depending upon the

source consulted, but the major issue for the children is that they require

specialized training and monitoring because of cogniti.... =1:%.! adaptive deficits.

The etiology of some retardation can be traced to metabolic, genetic, or

traumatic factors. Certain brain infecticris and toxins cause additional

cases of severe and permanent cognitive impairment. Explanations such as

these account for approximately 250.000 to 350.000 mentally retarded

youngsters under the age of 18. and tend to be diagnosed early. Because of

the organic conditions which accompany these types of retardation. morbidity and mortality for this group is significantly higher than avrage. A second group of youngsters suffer from mental retardation due to psychosacial disadvantage. In contrast to the children with clinical retardation. their cognitive disability tends to be primarily in the mild

range and is generally so labelled only after they enter school. Because

such a large percentage of' these children have histories of significant financial and social deprivation. it is clear that poverty, disadvantage, poor nutrition, and environmental hazards play a major role in the

causation of this type of retardation. Such children do not tend to suffer

from increased morbidity and mortality. Major progress has been achieved in the prevention and minimization

of mental .ztardation through advances in genetic screening and prenatal diagnosis; care of prematurely born infants; screening. diagnosis. and

treatment of such disorders as phc-nylketonuria. , galactosemia. and hypothyroidism; reduced incidence of measles and rubella; and an

improved understanding of the effects of toxins such as lead and alcohol. and of the importance of early stimulation. The national network of 12 Mental Retardation Research Centers established by P.L. 88-164 and

operating under the leadership of the National Institute of Child Health

and Human Development has been one major force contributing to such progress, and_ such research programs focused specifically on mental retardation should be continued and expanded to maintain the momentum now evident. The university affiliated programs administered by the Office of Maternal and Child Health in DHHS are another major source of tertiary care services, community consultation, professional interdisciplinary training, and research into the problems of this population. As health care providers continue to emphasize prevention, recognition

is needed that the current health care system is inadequate for youngsters

36 o,

297
_with mental retardation in a number of respects. In addition to the

problems of coordinating ptirnary and specialty care, which are sirralar to

those outlined for children with chronic illness, there are four areas of

gross shortage in health services for retarded children. These are medical

coverage for chi:-.iren in 24-hour residential placement, the care of

superimposed handicaps, mental health care, and dental care.

- Severely retard pd children are often placed out of their homes with no

access to their santily health care provider. As a result_ it is the

responsibility of the agency caring for the child to provide adequate health

care. In the past, most such children were placed in large institutions that

were often managed by medical authorities. However, health care in these

institutions was seldom a high priority and often little more than crisis

care was provided. With increased public awareness of retarded citizens,

new systems of primary health care are being established in large

institutions with some measurable success. At the same time there has

beena growing recognition that institutionalizntion aggravates existing

retardation by divorcing children froin normal experiences, stimuli, and

relationships. As a result, when out-of-home placement has been required,

it has increasingly been arranged in small community-based group care

facilities. As beneficial as this change should be, there 'is considerable

variability in the health care available to children in community group

homes. All too often, only spotty medical and other support services have

been available to children disperses into-the community; Children with mental retardation share with physically -handicapped youngsters the need for a team approach to their complex problems.

Because so many youngsters are now returning to communities, the

desirability of community teams trained in the evaluation and followup of children with retartion and associated problems is underscored. A

major area of need for retarded children is apparent in mental health, an

issue addressed in chapter 5. Maternal and child health authorities have recognized the importance

of dental health for the retarded population and for the past 20 years have

supported relevant pedodontic training. Furthermore, the Robert Wood

Johnson Foundation's model program in dental education for the care of

handicapped individuals has made an impressive impact on the dental

care of retarded persons (9). Nonetheless, dental care is still needed by

many mentally retarded children, and extension and expansion of dental

services to this group should be given attention in dental health planning.

The families of mentally retarded children have substantial needs that

the current health care system addresses only marginally and certainly not

systematically. Increasing evidence indicates early identification and

acknowledgment of a child's retardation necessitates a supportive network

for parents, and that effective intervention is facilitated if families are

included in the planning and implementation of services. Early intervention and family support systems should be buoyed at all levels. There is an

opportunity for expansion of early identification and intervention programs shrough or in collaboration with 94-142, that includes the

specifiC goal of providing educational and related services to all handicapped chilclQn from birth.

298
Family supports in terms of jobs, housing, and food should continue to be a major concern of program planners for this group as well as other special-needs children. The double indemnity of poverty and retardation

should be recognized when children with mental retardation are born into poor families. In addition, respite care should be readily available to parents who become the 24-hour-a-day caregivers for their retarded

children. Parents and siblings often need a rest from such high intensity

demands. At different times, mental health, public health, special disability

councils, and education have been given the major responsibility for setting priority and policy for retarded citizens. Even when a single group has been designated as responsible, there has been no clear delineation of

the extent of that responsibility, with resultant overlapping mandates, coallicting procedural guidelines and in some cases contradictory philoso- phies. Under the Developmental Disabilities legislation, for instance, a

statewide council is responsible for setting policy, but the council has bruited financial resources and cannot actually carry out many of the policies it recommends. As a result, other agencies, whose vwn policies ay be quite different, may have to execute two or more mandates. At present, this situation is particularly pressing with regard to the criteria

za.blished to determine if children are eligible for various programs. The Federal Developmental Disabilities legislation is being construed

too narrowly to meet the needs of many mentally retarded children. This

legislation was intended to provide 'comprehensive services," in addition

to special services, for a group of individuals suffering from chronic disabilities whose needs swanned several human service fields such as

health, education, social welfare, and rehabilitation. The original act

included, among the developmental disabilities, other specified clinical diagnostic groups such as cerebral palsy and epilepsy. Recent amend- ments discarded this diagnostic approach and defined developmental disability as a severe chronic disability which: (a) is attributable to a mental or physical impairment or a combination of the two; (b) is man:Tested by the age of 22; (c) is likely to continue indefinitely; (d) results in substantiiil functional limitations in three or more of seven

specified life activities; and (e) reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services.

It is highly probable that most mildly mentally retarded individuals will not be considered "developmentally disabled" and thus will not be eligible

ror services as a result of these amendments, even though other program

rubrics (for instance those of P.L. 94-142) definitely would make them

eligible. In at least one State, occupational and physical therapy resources available through the Crippled Children's program to the whole range of

retarded and disabled youngsters are threatened with restriction to those

children who were most severely functionally impaired. It:would seem that the overlapping and contradictory procedural guidelines have the potential: for affecting large numbers of children. Under the current Develop- mantal Disabilities Act definitions as many as 7 to 2.25 million children

could be reclassified as ineligible for needed services.

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Severely Emotionally Disturbed Children

It is difficult to get an accurate and comprehensive picture of the extent

of serious emotional _disorders among children in this country, but it is

clear that a large number of young people are in serious trouble and need

competent professional assistance. Federal education authorities report

some 1.5 million emotionally disturbed children are receiving special

education service in the schools, and Rand Corporation figures indicate a

total of 2 million children per year receive a variety of public and private

services (... 5). Emotionally disturbed children come from all socioeconomic classes

and can be found in a range of settiligs. including correctional facilities,

programs operated by welfare and social service departments, private and public residential treatment centers, and in the community. in their own

family homes. The number of children with mental health problems, and the severity

of those problems. seems to be increasing. Adolescents, for example,

constitute the fastest growing admissions category in psychiatric hospitals. Suicide and homicide rates among both children and adolescents are

increasing at an alarming pace, and growing numbers of young people

display learning disabilities, and problems with drug and alcohol abuse.

The dominant paradigm for treatment of emotional disturbance and

mental illness in children al-Ad youth is psychotherapy in conjunction with medication, generally in a therapeutic milieu. This treatment mode

requires the skills of psychiatrists, clinical psychologists, psychiatric social

workers, and psychiatric nurseshighly trained specialists whose services

are expensive. Further, this type of treatment tends to be quite prolonged,

which adds to the costs. For families with limited resources, the expense

may constitute an insurmountable access barrierespecially because

insurance coverage for such treatment is often limited.

Equally troubling is the fact that although traditional treatment approaches are highly effective with some individuals. they do not work

very well with (1) children and youth from educationally disadVantaged

environments wnere verbal communication is inefficiently used in

problem solving; (2) those whose socialization varies sharply from

mainstream expectations; and (3) those from families and neighborhoods

so disorganized that the normal sources of affection, support, and

discipline needed to sustain therapeutic efforts are lacking. Children in

these three categories constitute a substantial proportion of the emotionally disturbed group, but their needs are not being met and some mental

health specialists are actually trying to redefine the problem in a way that

will exclude such children. A number of residential treatment centers

already refuse to accept them, limiting admission to children who are

depressed, suicidal, neurotic, psychotic, or suffering from disorders, such as ulcerative colitis or anorexia nervosa, believed to have a high

psychosomatic component. An essential first step toward resolving some of these problems is to

recognize that children in need of mental health services are foiind not

only in psychiatric treatment centers, but also in the schools, the

300
correctional system, the social service system, and the community. Mental health specialists must be prepared to assist emotionally disturbed

children wherever they are, regardless of what servicz: system has primary

responsibility for their overall care (see chapter 7). Second, the treatment approach itself must be reconceptualized to

include more types of :ntrvention. The mental health problems of

, children are inextricably bound up with the most basic problems of living, ant. cannot be "treated" apart from the family, neighborhood, school, and

community, which are, the normal socializing influences of society. Many

emotionally disturbed children need common-sense assistance in relating

appropriately to peers and adults, and can be helped by mental health

counseling which differs from the traditional approach in that it is

relatively nonverbal, and does not seek psychodynamic or etiologic roots.

c, The emphasis is on current needs and current function, and upon

strengthening both the natural support systems around the child and the

youngster's ability to wake use of those supports. In-this-type-of -mental health intervention, the role of the psychiatrist or other highly skilled professional is to investigate the child's natural setting

and devise a treatment program that takes advantage of the skills of parents, siblings, teachers, friends, case workers, counselors, and others to

carry out the bulk of the therapy through nay -to-day support, protection, discipline, and guidance. This "ecological" approach emphasizes treat- ment in as near to normal settings as possible. with an eye to restoring or creating an effectively functioning support network for the child and

enabling him or her to respond appropriately to it. When children must be

remo led from normal settings, it should be for the least possible distance

in tim-, space, and psychological effect To redirect the emphasis of mental health services for emotionally disturbed children to reach the full array of young people in need of help,

L Iv institutional arrangements need to be devised. Psychiatric profession- als, for example, should assume major consultant and training functions. They will need to identify and help to train various personnel in the

communitysocial workers, nurses, teachers, counselors, and so forth who can work effectively with emotionally disturbed children. They will

also need to provide backup for such "front-line" workers, especially in

.handling difficult and complex problems. Expanded programs for emotionally disturbed children and youth should seek to multiply the

effectiveness of frighly trained and expensive mental health specialists

such as psychiatrists, clinical psychologists, and psychiatric social workers,

and to make systematic use of the abundant pool of competent, concerned

community personnel able to work effectively with many troubled young

people. Finally, with regard to mental health programming, a particularly difficult issue that needs urgent attention is the increasing suicide rate. Although part of the problem is the increasing stress on youngsters, another is the inadequate facilities for the care of youngsters who are

suicidal.- Suicidal inclination is acknowledged as a medical emergency and

yet often there are not services available in appropriate settings to handle

this

ION 304.

301
Children with Multiple Handicaps

Statistical accounts acknowledge about 50,000 children as multiply

handicapped. However, when multiply handicapped refers to a child with

both physical and emotional disturbance or both mental retardation and

physical disturbance, the number increases. The health care system is

designed to respond to single or primary problems, not to individual

children who may have a variety of problems. Thus it often does not meet

the needs of such children.

Parents of multiply handicapped children often find they must wend

their way though a maze of different public and private programs in order

to obtain the services they need. They must learn the eligibility criteria for

each and find ways to justify their child's inclusion. The specificity issue is

especially problematic 'in regard to mental health and retardation. Criteria

are often such that a child may be both too "emotionally disturbed" for

services provided to children with developmental disabilities and too

"cognitively impaired"- for mental health services. These children make up

a substantial proportion of current residents in State. schools. Often their

histories reveal that their parents sought fruitlessly for services for years

prior to admission. When services for children with multiple problems are provided, it is often only in a fragmented fashion. For instance, a child

with Down's Syndrome and leukemia (a common association) may fit the

criteria for Crippled Children's Services because of his chromosomal

anomaly but not because of his cancer, and conversely may receive other

services for his leukemia from a voluntary care program which is not

designed to help with his Down's Syndrome. The integration is often left

to parents rather than being provided as a necessary adjunct to health

care.

Common Themes

Certain general themes emerged from the Panel's review of the health

care needs of children with chronic illness and handicaps. First,

coordination of care with elimination of duplication and unnecessary

categorical restrictions is urgently needed. Second, professionals at all

levels need more training to deal more effectively with these children.

Third, prevention and early identification efforts need support and

expansion. And fourth, the families of such children need significantly

more financial and psychosocial support. Until fairly recently, Federal policy toward chronically impaired

children w2' concentrated largely in the Crippled Children's component of Title V and in programs fok the mentally retarded and severely

disturbed. Since the 1960's, however, both the number of programs and

their scope have increased, to the point where there are new seven major

service programs spanning tae health, education, and welfare sectors: the --

Title V Crippled Children's Services program; P.L. 94-142; Head Start;

the Developmental Disabilities program; the Disabled Children's program

under Supplemental Security Income; EPSDT; the Vocational Rehabilitation program; and a number of mental health programs Each has its own

302
target population, funding, regulations, and operational base. No single agency or authority at any level of government is responsible for

identifying all children with chronic impairments, diagnosing their needs,

and ensuring that comprehensive health services are provided them. Until there is an agreed upon Federal - State - community system to facilitate provision of coordinated services by a community team, these children

and their families will continue to face problems and shortfalls in the

services they receive. The type of health services a chronically impaired child receives and the

site at which they are provided depends to a large extent upon financial status. The poorest children tend to receive services in hospitals, often in

an episodic and impersonal fashion with frequent changes in provider personneL Children from families of modest means with na insurance

coverage are more likely to receive care through the Crippled Children's Services program or maternal and child health service centers. And

children whose parents are rnetre affluent or have extensive insurance

coverage are most likely to i eceive care from private physicians, often

specialists. No one of these approaches or providers always insures that ----the-child--is-receiving comprehensive health servicesprimary care as well as specialized services, preventive services as well as acute treatment,

psychosocial services as well as medical care. The Panel's investigation indicates that at the Federal, State, and local

levels, a central authority is needed to assume major responsibility for the

full coordination of various health-related programs for physically and mentally handicapped children, especially those supported wholly or in part by the-above-mentioned Federal programs. Whenever possible a

community team approach should be taken with every effort expended to

complement school based efforts under P.L. 94-142. This coordination may be accomplished if health authorities are willing to help in the

individual evaluation process, to share data with the school planning

team, and to help in the provision of related sert- P.L. 94-142 has increased opportunities for handicapped children and

through its related servic= provisions has brought a challenge to health

providers to upgrade and extend services. This major legislation has also

heightened awareness of the needs of handicapped children- and made it

clear how inadequate the training of most health providers is incombining knowledge of child development, functional ability, and handicapping

conditions. Programs established to meet these training needs should be

continued and expanded. Another general Panel concern is that the promotion of child health must include prevention of handicaps and chronic impairment As

mentioned earlier in the report, many conditions discussed in this chapter are preventable by early detection and management (e.g., PKU, hypothyroidism), :=4.---.^..aved prenatal and perinatal care, immunizations, accident prey_ cation, and improved social conditions. Lilcewise, early ider citication

and intervention can do much to alleviate the secondary consequences of

many conditions. Unfortunately, in many States such services are

available only on an incomplete and fragmented basis through programs established by the Federal and State Governments, or through the private

sector, requiring the family to be able to pay. Because results from these

303
0-20 20-40 40-60 60-80 >80

Number of unserved children in thousands

Number of States with specified numberi of potentially unserved

handicapped children under .P. L. 94-142: United States, 1977-78

school year 3 0 7
programs_are beginning to be effective, the current situation where some

handicapped children receive early intervention and others do not is dearly inequitable; all should now be assured access to such programs. Health authorities should take the lead in the early identification of handicapping conditions, especially in infants and young children -5 years old and under.

Recommendadons

The health problems of all children described in this section are so

serious that they affect every aspect of the children's lives. To have any

impact on these problems, programs must address the needs of the child, of his family, and of his community_ Therefore, the Panel's recommendations are directed at improving services for each of these needs. The Panel recommends that certain basic principles underlie the prov-ision of health services to all children with chronic illness, physical and sensory handicaps, mental retardation, and severe emotional distur- bances:

Routine care for all such children should be in the home or as near

to a normal setting as possible, with emphasis upon restoring the

functioning effectiveness of families as well as enabling the young person to respond to the normal sources of support, affection, instruction, and discipline. When children must be removed from

normal settings, it should be for the least possible distance -in time, in space, and in the psychological effect of the experience, and to

a locale where adequate services are provided. For all children with chronic or life-threatening diseases, hospitals should design systems that maximize use of care in nearby, homelike settings, including hospice care when necessary, to minimize the time these children must spend m the hospital itself. Efforts in this direction should be promoted and expanded by

private charitable organizations and public programs, and should be reflected in private and public third-party reimbursement policies. Primary health care services should be available to these young- sters as well as the more specialized care required for. the management of their specific handicapping condition. Mental health services should be readily available for all chroni- cally impaired children and their parents, through the provisions of the Community Mental Health Services Act and other sources of support, both private and public_ As often as possible, mental health services for young people should be made available through

the systems and in the settings where the youngsters may be

foundhealth settings, schools, _correctional facilities, social

services, and others. 4. Dental health programs and policies should incorporate adequate provision for the care to meet the special dental needs of all such

children_

305 30&
Special consideration should be given to the developmental concerns of adolescents with chronic impairment or handicap, to

ensure in both ambulatory and hospital settings that issues of selfimage, dependency, sexrality, peer relationships, and life plans are

being addressed. The Panel recognizes the special burden and challenges borne by the

parents and siblings of children with chronic Illness and handicap. In an

effort to alleviate their problems, the Panel recommends the following: The families of children with disabilities and serious illnesses

should have ready access to a wide range of psychosocial support

services.

As more families care for the special needs of their youngsters at home, provisions for training and aid in care for such children

should be made. This should include training about diets,

medications, and financial resources. Support programs to provide

such training should be readily available via public health and

social service departments as well as private health care providers. The hidden costs of care for chronically impaired children, including transportation, home renovations, special equipment, and lost work time for parents, should be taken into account more

adequately in all relevant public and private programs of support_ Respite care shOuld -be readily accessible- for parents who become

the full-time caregivers of their handicapped children. Special tax credits should be created for parents caring for

handicapped children in the home_ The Panel believes that a number of adjustments are necessary at the

community level, to optimize the use of public funds and resources for the

improvement of the lives of handicapped children. The Panel therefore

also recommends: Full implementation of recommendations elsewhere in this report

to enhance the availability and accessibility of prevention services. Categorical research programs pertaining to the determinants of

specific illnesses, handicapping conditions, and mental retardation

should be continued and expanded. Health authorities in each State should play a major role in early

identification of handicapping conditions in infants and children

aged 5 and under, in a manner which lends coherence and

coordinates withrather than duplicating or parallelingearly

identification activities of the private sector and the schools. Early

intervention programs should be expanded_ Training in the understanding and management of children with

chronic disabilities should take place on all fronts. Because.

primary health care providers should assume a more active

advocacy role in the coordination of services for children with

physical and ftinctional problems, current efforts to train pediatricians and other health care providers to be more effective in this

role should be expanded. In addition , the University Affiliated Training Programs designed to train developmental specialists should be continued as a model of interdisciplinary professional

306
education- Increased attention should be paid to the training and

utilization of related professionals, paraprofessionals, and Commu- nity members in the various aspects of care. Training programs for parents should be expanded, and programs designed to sensitize nonhandicapped children to the special needs of their disabled

. peers should be made universally available. The training programs designed for health and social service personnel who care for chronically ill and handicapped children

should underscore the needs of families for psychosocial care, including counseling and related social services such as transportation, and help with day-to-day home management and financial needs.

aearer guidelines and specifications are needed in a number of public programs for smoother operation and grea:er benefits to the children

served.

All agencies using the individual service plan format for the evaluation of handicapped children should coordinate their

requirements so that one evaluation and one plan can satisfy the

accounting and programmatic needs of all service sectorsincluding health, school, hospital, mental health care, et cetera. Whenev- er possible, lead agencies should be designated and school, health; and social service agencies should establish community teams to

coordinate services.

A clearer designation or a policymaking- group for each State is necessary. The Panel feels that for mental retardation services, the Developmental Disabilities councils should have greater authority

in community and State health planning. At the same time, the Panel feels that the Federal Developmental Disabilities legislation must be construed broadly to include children with all levels of developmental disabilities rather than only the severely mentally

retarded. For health planning, Federal, State, and local maternal and child health authorities should assume major responsibility

for the coordination of various programs for physically and mentally handicapped children supported wholly or in part by Federal funds under the Title V Crippled Children's Services program, Medicaid-EPSDT, the Developmental Disabilities pro-

_ gram, the Disabled Children's program under Supplemental Security Income, Vocational Rehabilitation, and Mental Health programs. Coordination should be directed at creating and

maintaining a community team approach to health and healthrelated services, and a clearly specified system of backup medical services, for every handicapped child. The efforts of maternal and

child health authorities in this regard should complement school-

, based efforts under P.L. 94-142. (See the Panel's specific program

recommendations in volume II (10).) Whereas categorical services for the mentally retarded must be

continued, State maternal and child health authorities should give

technical assistance for health-related aspects of programs for the mentally retarded.
CHILDREN IN INSTITUTIONS AND FOSTER CARE

A substantial number of children are removed from their homes each

year and placed in various institutions or foster re settings. Most of

these youngsters are the responsibility of the juvenile justice system, the

social welfare sy....tem., or both.

Although parents may voluntarily place their children in fOSter care

because of a family crisis of some sort or an inability to meet the special

needs of a child with a handicapping condition, many placements in

institutions or foster care are involuntary and the result of court ordeiS.

Juvenile and family courts have traditionally had jurisdiction over three

main categories of children: abused and neglected children found by the

court to be receiving inadequate care and protection; juvenile delinquents,

i.e.. criminal offenders; and status offenders, that is juveniles who have

not : committed a crime but are the control of their parents, are

runaways, truants, or engaged in other forms of socially undesirable

behavior. All of these children have health needs that must be addressed

by those responsible for their care_ In many cases, these needs are not

being adequately met at present.

Juveniles in Confinement

Thousands of juveniles are confined each year in secure facilities, either

in short-term detention facilities prior to court proceedings or for longer

durations in juvenile correction facilities following court action. According to a U.S. Cinius Bureau survey, more than 500,000 juveniles were

admitted to public detention and correctional facilities in 1979 alone (1 I).

An unknown number spent at least some time ix.- adultjails.

The vast majority of confined juveniles are classified as delinquent

Most are adolescents, and males far outnumber females. Because these

youngsters are in effect wards of the State, the juvenile justice system in

general, and the facilities where they are confined in particular, have a

duty to provide them with adequate health care.

Physical Health Problems

For a.variety of reasons, ahigh proportion of juveniles placed in secure

settings suffer from health problems. Medical problems were diagnosed in

46 percent of the 47,288 adolescents examined over an,11-year' period in

New York City's single youth detention facility, to cite one case study

( 11). Confined juveniles are disproportionately from low-income fat:Mlles

and minorities, groups that typically have more health problems than

other persons. In addition, they share the growth and development

problems of all adolescents, and may suffer from special problems such as

alcohol and drug abuse, venereal disease, and untimely pregnancy related

to the conduct that first brought them into the juvenile justice system.

Finally, confinement may exacerbate preexisting health problems or

contribute to new ones. Juveniles may suffer injuries as a result offights or

self-mutilation. Staff attempts to "control" youngsters through handcuffs

308

31
and other rev.raints, or through excessive medication, can also. lead to

health problems, as can the various forms of physical and psychological abuse that are all too common in many- detention and correctional facilities.

Menial Health Problems

Although a paucity of data on the subject exists, most authorities believe the incidence of mental illness, emotional disturbance, and mental retardation is higher among confined juveniles than among those in the general population. The precise nature of the link, if any, between such

problems and a youngster's involvement with the juvenils justice system

remains unclear, although the issue clearly deserves further research

attention.

There are fundamental questions about the appropriateness of placing

youngsters with mental health problems in facilities that by and large lack

the capacity to respond effectively to their problems. Juveniles who are mentally_ ill, emotionally disturbed, or mentally retarded all too often wind up in detention and correctional facilities without having their problems

identified or diagnosed anywhere along the way. In other instances such youngsters are placed in confinement precisely beause there are no

alternative facilities available_ Even with flexible and diverse alternatives, which a number of States are increasingly working to develop, there will continue to be some mentally ill, emotionally disturbed, or mentally retarded youthful offend- ers who must be placed in secure settings. Detention and correctional facilities have a responsibility to meet the mental health needs of such

juveniles, just as they must meet the physical health needs of all those in

their care. Juvenile offenders with mental health or mental retardation

problems should not be placed in secure detention or correctional settings

that lack services to meet their special needs_ A top priority for all detention and correctional facilities in which

juvenilei are placed is the-prevention of suicides, which are more likely to occur among confined youngsters than among Those in the community. Because studies indicate most suicidei occur within24Eours- of admission, close observation of newly admitted juveniles is crucial. All facilities

should include adequate programs of suicide preventioit, and should offer a full range of other preventive mental and physical health care_

Needed Services

There are widespread deficiencies in the health care provided by

juvenile detention and correctional facilities, many of which do not even

have admission screening. Such screening is essential to identify seriously

ill juveniles who should be transferred to hospitals or clinics rather than

admitted, to diagnose health problems that will require immediate or continuing treatment, and to identify _ juveniles with communicable diseases: Beyond the prelimiisiry admission screening, confined juveniles also need complete medical evaluations and appropriate treatment plans where indicated_ The Panel recommends that detention and correctional

"IS 309
facilities provide a full medical evaluation to all juveniles on entry and

periodically thereafter. and ensure ready access to primary health and

emergency health care. Many facilities cannot presently provide emergen- cy care on a 24-hour basis, an important service. Regular sick call

conducted by a physician or other qualified -health professional, continuing clinical and supportive services, and infirmary or hospital care are also

necessary for appropriate health care of confined juveniles. Bad as many juvenile facilities are in'providing appropriate health care

to the young people confined in them, they areas a groupfar better

than adult jails, where a substantial number of children are detained at

least briefly each year. Only a tiny fraction of jails provide medical screening upon admission; indeed. studies have shown most either lack

any medical facilities or have no more than first aid kits (12). Children in

adult jails are under severe psychological stress and are too often

subjected to physical abuse as well_ The Paneljoins other groups in urging

that Federal, State and local governments move to prohibit absolutely the confinement of juveniles in adult jails, and rake immediate stepsuntil that objective can be fulfilled to provide maximum protection to

children .held in such jails, along with comprehensive medical and

educational services. .7 Personnel

Services in juvenile detention and correctional facilities may be

delivered on the premises by full- or part-time employees, of the premises

by health care professionals working under purchase-of-service contracts,

or by a combination of both_ The choice of a delivery arrangement will

depend upon the size and financial resources of the facility and the level of

health care to be provided_ Even large facilities with fairly comprehensive

services need linkages with hospitals and medical centers in the communi

ty to meet complex or intensive care needs of their confined juveniles. All

facilities, moreover, need to coordinate with community health services to

assure continuity of health care after a juvenile is released. In the absence

of adequate referral and follow up mechanisms, a youth's health problem

may actually worsen after release and his or her ability to function in the

community may be impaired_ Whatever the service delivery pattern, every detention and correctional

facility should designate a qualified health professional or agency as the

health authority responsible for arranging for all levels of care for that

facility's juvenile population. This health authority should be routinely

accountable to State maternal and child health authorities for the scope

and quality of services. A major key to the quality of health care in secure settings lies in the

ability or the institution to attract and keep high caliber professionals, an

often challenging task. The practice of medicine in such facilities requires

special sensitivity and skills, both in dealing with juvenile patients and in

maintaining good relationships with other.facility staff. Confined juveniles

may be suspicious of or hostile to health care personnel whom they have

not freely chosen and who may be perceived as just another part of the

custodial staff. Such youngsters may sometimes fake medical complaints

310

a I j
and otherwise try to manipulate health professionals for their own

nonmedical purposes. Tensions' can arise between health personnel and other staff- regarding security precautions. Health personnel cannot be exempt from such security considerations, but they must nonetheless

retain autonomy with respect to medical ju-gments and treatments.

Juveniles in- Foster -Care

The State is responsible for seeing that health needs of juveni!es in out- of-home settings, such as foster families, group homes, and residential

treatment centers, are adequately met. There have been few systematic

efforts to identify and analyze either the health needs of children in foster care or in the availability and adequacy of services to meet such needs. Research along these lines should be given high priority by appropriate

agencies of Ea-INS. What little is knoWn about the health status of children in foster care

suggests they have a number of problems. One study, a 1973-74 evaluation

of the physical, mental, and dental health status of more thane 600 children

in foster care in New York City, found that wore than one-half had at

least one chronic physical problem and 20 percent exhibited multiple disabilities (13). Many children in foster care do not receive adequate health assessments and diagnostic services, despite the fact that regular health assessments are particularly important for children in foster care. There should be special, in-depth attention for foster children who have had multiple placements or have been the subjects of abuse. Assuring continuity of care for foster children poses special problems because medical records may be incomplete as a result of poor tracking

systems, or because children enter foster care on an emergency basis and

there is little medical history available. Foster pirents often lack

information about a child's health needs, and records of past immuniza.-

tions and medications may not be transmitted from one placement to the next. The, Panel recommends that DIIHS, in developing regulations to

implement P.L. 96-272, the Adoption Assistance and Child Welfare Act of 1980, require that care plans for children in foster care include a

statement of the child's health needs, the health services being provided, and the agencies or individuals responsible for providing needed services. Children in foster care often receive inadequate treatment services as well as inadequate health assessment and diagnostic services Although

basic medical care for those in publicly. supported foster care is covered by Medicaid in a majority of States, reimbursement for emergency care, orthodontia, and prosthetic devices is likely to be left to local option or to

special State payments based on-individual determinations.

- Further, many handicapped children now in institutions could be placed in foster family homes if special support services were available, such as physical therapy, psychotherapy, mental health counseling, and

training for foster parents to meet the child's particuliir needs at home. The Panel recommends that foster- parents willing to care for a handicapped or chronically ill child receive a higher basic support

311
payment and that Medicaid reimbursement be extended to all physical

and mental "health services needed by children in foster care, whether

those children are handicapped or not. Demonstrations should be

undertaken to test the feasibility of utilizing Medicaid-financed home health care to help some seriously handicapped children now in

institutions to reside in less restrictive settings. Until recently, children in foster care receiving public support payments

and Medicaid lost their eligibility for such assistance if adopted by

families with incomes over the eligibility cutoff for those programs. This

created a severe financial disincentive for adoption of children with

handicapping conditions because their medical carein the absence of

public fundingwould constitute a significant financial burden for

adoptive families. The Panel commends Congress for addressing such

Problems in P.L. 96-272, the Adoption Assistance and Child Welfare Act

of 1980, and urges that regulations implementing this Act be designed to

maximize prospects for adoption of children in foster care.

Children in foster care are already eligible for health assistance under a

number of Federal programs. They may have case plans developed for

them under P.L. 94-142, the Developmental Disabilities Act, the Social Security Insurance Disabled Children's program, the Title IV- B Child

Welfare Services program, and the AFDC-Foster Care program. There is,

however, little coordination among these nor any assurance that an

individual child in foster care will receive the attention and benefits due

him or her.

The Panel recommends that outreach efforts be conducted under State

EPSDT programs and under P.L. 94-142 to contact foster parents and

institutions to apprise them of the programs and assist children in

obtaining needed services for which they are eligible.

ACCESS PROBLEMS OF SELECTED GROUPS

A combination of factors relating to language, culture, and geographic

mobility create distinctive access problems for three groups of mothers

and childrenmigrant and seasonal farm wor'.,...!trs, Native Americans, and

refugee and illegal immigrant families. The problems of each group pose a

unique challenge to those responsible for the effective organization of

health services; no single solution can be applied to all.

Migrants and Farm Workers

The Department of Health and Human Services estimates there are at

least 800,000 workers and family members in the migrant population, and

as many as 3,000,000 seasonal farm workers and family members. Most

live in marginal economic circumstances that are, if anything, getting

worse rather than better as a result of reduced job opportunities, inflation

in living costs, and cutbacks in medical aid programs. Such individuals

typically have little if any coverage under "mainstream" social welfare

312 3 5
programs such as unemployment insurance, workers' compensation, Medicaid, and the like, The Federal Goveinment has a number of programs aimed at

addressing the needs of migrants and farm workers, but these categorical

.programs have not always been adequately coordinated with each other.

For example, the Migrant Student Record Transfer System sponsored by

the Migrant Education program maintains records on approximately

600,000 students. In recent years, this system has been linked with migrant health service programs so that selected health information is included

with a child's student record and moves with him or her as the child

changes location. This linkage should be extended to cover migrant children in Head Start, in health prOgrams not, presently included, and, if

possible, in such additional Federal programs as the Supplemental Food

Program for Women, Infants, and Children. Thus, a child'sstudent record

would include not only selected health data such as immunization status, but also such data as his or her participation in Head Start, the Crippled Children's Services program of Title V, or the nutritional programs of

WIC. Maternal and child health plans developed by the States under Title V

should contain explicit provision for meeting migrant health care needs. In

States such as California, Texas, and Florida which serve as "home base"

for thousands of migrants during a major pail of each year, more

aggressive Federal and State efforts should be undertaken to provide needed preventive and treatment services to mothers and children while

they are in residence. Federal efforts to assist migrant children would be strengthened by greater interagency cooperation, and could benefit from a series of

cooperative.- projects utilizing DHHS as a read agency but involving other relevant departments as well. These include the Deparments of Agriculture, Education, Housing and Urban Development, Labor, and the

Environmental Protection Agency.

Native American Children and Mothers

Approximately 753,000 Indians and Alaska Native persons live on or

near Federal reservations, more than one-half of whom are children and

youth under the age of 19. The past quarter century has seen major gains

in the health status and access to care of Native American children and

pregnant women, largely through the efforts of the Indian Health Service

(IHS), an arm of the Public Health Service of DHHS. Infant mortality

rates, nearly double those of the rest of the population in 1954, are now

virtually the same as the national average. Maternal deaths in childbirth

have gone down 91 percent; and tuberculosis death rates have decreased

89 percent (14). Such improvements, obtained through an aggressive

expansion of hospitals and clinics both on the reservation and in urban

areas, are comparable to those enjoyed several decades earlier by the

general population.

116 316

313
. 'Native Americans in general, and pregnant women and children in

particular, now suffer from many of the life style-related health problems

that plague the rest of the population. These include: (15)

Accidents: The age-specific accident mortality rate of Indian

children 1-4 years old is about two-and-one-half times the rate for

non-Indian preschoolers. Teenage pregnancy rates for Native Americans exceed those of

the general population, and only 23.4 percent of all women of

childbearing age are using contraceptives. Nutritional problems: Obesity is a serious problem among Native Americansas it is throughout our societyand often has its

onset in childhood. Alcohol abuse: There is some indication that fetal alcohol

syndrome may be more prevalent among Indians than among

other population groups. Emotional and behavioral problems: Two-thirds of the parents

interviewed in one Indian Health Service survey have voiced

concerns about their children's behavior. At present, mental

health services for children are scarce because few if any I HS staff

members are trained to provide such services. Child abuse and neglect: Although the data are incomplete, there

is some evidence that the incidence of child abuse and neglect

may be greater on reservations than elsewhere in society. Handicapping conditions: An estimated 10 percent of Native

American children have handicapping conditions that require

special services. The Panel recommends that, in the 1980's, the IHS focus greater attention on these and similar psychological, social, and behavioral

problems while continuing to address more traditional problems such as

infant mortality and infectious disease. The IHS provides direct health services to Native Americans through 50

hospitals and hundreds of health centers and clinics. The program

includes preventive services such as sanitation, dental care, public health

nursing, health education, nutrition, eye care, mental health services,

alcoholism programs, and social services. The Panel urges that Congress

provide the support needed to sustain and expand existing IHS programs,

and to initiate additional services in the areas identified above. More

needs to be done to ensure that increased numbers of Native Americans

enter the health professions, that more team care involving physicians,

dentists, mental health workers, and other professionals is made available,

that water and sanitation services are expanded, and that primary care for

urban Indians is increased and expanded. This requires ample support

and vigorous implementation of P.L. 93-638, the Indian SelfDetermination and Education Assistance Act and P.L. 94-437, the Indian

Health Care Improvement Act. The Health Care Financing Administration and PHS and IHS should

also strengthen working relationships to reimburse IHS hospitals and their

satellite facilities for care provided to Native Americans who are

medically eligible. In addition, HCFA and IHS should develop innovative

314

3 1 '7
outreach practices such as the use of tribal councils to reach families and

encourage them to obtain needed preventive health care under EPSDT.

Refugees, "Entrants," and Illegal Immigrants

Although all of these groups share some common problems in obtlining

access to health serviceincluding language barriers and cultural differ- encesthey are treated quite differently by law and public policy. Refugees fare best and illegal immigrant families worst; the latter far outnumber the former by all available estimates. Approximately 300,000 people, most of them Indochinese and Cubans, are currently eligible for benefits under the Refugee Act of 1980, which

specifies that States shall be reimbursed for providing comprehensive

servicesincluding child health and welfare servicesto refugees for 3

years after their entry into the United States. Unaccompanied children are

entitled to services until age 18, or for at least 3 years, whichever is longer. The health status of refugees is often poor at the_time of their arrival in

this country, but their problems tend to be remediable ones such as undernourishment and parasitosis. The Public Health Service's Office of Refugee Affairs supervises the provision of health care to refugee groups and seeks to assure that the scope of services is adequate. In general, the program has succeeded in providing refugee children with basic preventive care such as immunizations and in linking them with a regular source of primary care. The principal problem with the existing law as it affects-the health status and access to services of refugee children is the discontinuity that is built

in by the 3-year eligibility limit or cutoff at the child's 18th birthday. The Panel recommends that PHS's Office of Refugee Affairs assess this problem in detail, with particular auention to the difficulty of obtaining Medicaid eligibility for those children and families who remain poor after

the initial entry period. The legal category of "entrants" has been recently created to describe

those foreign nationals who arrive in the United States seeking political asylum or a better economic life who are not deemed to meet the legal qualifications for refugee status. Pregnant women and children who are

classified as "entrants" are at a considerable disadvantage, because they

are not eligible for benefits under the Refugee Act of 1980. In many

instances, this means they immediately join the ranks of the medically

indigent, receiving care that is far from adequate for their needs but is nonetheless costly to local providers. Federal policy towards "entrants" is still evolving. CIHHS has taken one positive step in deciding that unaccompanied "entrant" children should be eligible for the same comprehensive services as refugee children_ The Department of State has made funds available for this purpose under the Migration and Refugee Assistance Act of 1962. The Panel believes that no distinction should persist between refugees and "entrants" in determining

the eligibility for health care of pregnant women and children. Either the Refugee Act of 1980 should be amended to eliminate the distinction which

315

31
now exists, or DHHS and the State Department should extend to all

"entrant" children and pregnant women the arrangements now in use for

unaccompanied children. In addition to refugees and "entrants," thousands of children enter the

United States each year as members of illegal immigrant families.

Thousands more are born here to parents who are illegal immigrants. In

either instance, the illegal status of the parents bars them from eligibility

for Medicaid and hence makes access to health services more difficult for

such families than for other low-income families. Such families typically

have greater health problems, receive less preventive care and wait longer

to see a physician wan other people. They most often obtain medic..t1 care

from hospitals, as indigents. The cost to hospitals in aie.as with a

significant concentration of illegal immigrant families can be quite high.

According to one study, care for such individuzis in 1979 accounted for

33 to 6.4 percent of all patient costs in all hospitals in San Diego County,

Calif. Approximately one-quarter of these costs were for pediatric and

obstetrical-gynecological care (16). Some have suggested that the easiest way to resolve such problems is to

make illegal immigrants eligible for Medicaid. There are major problems

with such an approach, howeverincluding the prospect of increased

Medicaid costs, the political question of whether it is desirable to extend

free care to noncitizens and the likelihood that many undocumented

persons would be reluctant to apply for benefits even if eligible, for fear of

detection by immigration authorities. The Panel instead endorses and

supports the policy of the Public Health Service permitting 'Illegal

immigrant families full access, with no questions asked, to comprehensive

services available at Community Health Centers, Migrant Health Projects

and Rural Health Centers. In addition, Congress, DHHS and the States

should develop means for providing more fiscal relief to communities

where municipal health services provide care to significant numbers of

illegal immigrant families. And finally, the normal maternal and child

health planning process under Title V in each State should reflect a

concern for assuring health care access for such families.

REFERENCES AND NOTES

(I) U.S. Department of Health. Education. and Welfare. Office of the Assistant Secretary for Planning

and Evaluation Health. -Improving Family Planning and Services for Teenagers.- Prepared by

the Urban and Rural Systems Associates under contract 1-IEW-05-74-304. San Francisco. Calif

June 1976.

(2) National Academy of Sciences. Institute of Medicine. Adolescent Behavior and Health: A

Conference Summary. Washington. D.C.: National Academy of Sciences. October 1978.

(3) Brewer. G. D. and J. S. Kakalik. Handicapped Children: The Strategics for Improving Services.

New York: McGraw Hill. 1979.

(4) Gliedman. J. and W. Roth. The Unexpected Minority: Handicapped Children in America. New

York: Harcourt Brace Jovanovich. 1980.

(5) V.S. Department of Health. Education. and Welfare. Office of Education. Progress Toward a Free

Appropriate Public Education. A Report to Congress on the Implementation of Public Law 94-142:

The Education for All Handicapped Children Act. Washington: January 1979.

(6) Palfrey, J. S.. J. C. Levy. and K. L. Gilbert. -The Use of Primary Care Facilities by Patients

Attending Specialty Clinics." Pediatrics 65: 567-572.1980.

'316 3_13
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FINANCING HEALTH SERVICES

FOR CHILDREN

AND PREGNANT WOMEN

The way in which health services are financed is the single most

important determinant of how the health care system operates, what services are available, which professionals provide those services, and who will receive them. In the Panel's view, existing financing arrangements not only fail to enhance the Nation's efforts to improve the health of all Americans, including mothers and childrenthey' often work at cross purposes to this objective. The Panel found two fundamental problems with the existing financing of health care. First, public and private third-party payment systems as

they now operate provide incentives that result in an allocation of physician time, distribution of physicians by specialty and location, av d a manner of providing health services that collectively are unresponsive to a

significant part of patient needs, especially those of children and pregnant women, and that unnecessarily drive up health care costs. Second, and

equally important, current financing arrangements leave millions of Americansan estimated 12.6 percent of the populationwith no public or private health insurance protection whatsoever, and many millions more with coverage that is so grossly inadequate that insurmountable

financial barriers to needed health care remain (1). Fundamental changes are needed in the financing of health care for children and pregnant women to ensure that the basic goals discussed

earlier in this report are realized. The most important of these goals is to

ensure that all health and health-related services that the Panel has identified as needed be available and accessible to children and to

pregnant women without regard to ability to pay. Our recommendations for improvements in financing programs include proposals to modify the way that all third-party payers, public and private, pay for personal health services, steps that can be taken

immediately to improve private insurance and Medicaid, longer-range national health financing proposals, and modifications to be made in

grant programs both immediately and for the long run.

321 319
CHANGING THIRD-PARTY PAYMENT POLICIES

AND PRACTICES

Our specific recommendations for changes in the way that third-party

payers pay for personal health services reflect two major conclusions

reached in the course of our deliberations about financial incentives and

health care: first, that public policy should promote modifications and

alternatives to existing methods of reimbursing health professionals and

institutions, and second, that policies and practices of all third-party

payers should be based. on a more systematic assessment of the

relationship between financing decisions and the availability, accessibility.

appropriateness, quality, and cost of care.

Alternative Payment Methods

Under prevailing private and publiC third-party payment practices,

hospitals are typically reimbursed for their costs (or sometimes charges)

and physicians for the fees they charge for each service performed. The

principal test employed by public and private insurers in setting

reimbursement levels is whether costs, charges and fees are "reasonable"

or "usual, customary and prevailing." As all of these measures are

inherently rel.ative, there is no incentive for any provider to reduce prices

and every reason for them all, collectively, to perform more services and

to raise their charges. The more "allowable" costs a hospital incurs, the

more beds it fills, the greater its revenue. The, more procedures a physician

performs. the higher his income. Economic motives are only one influence on the behavior and

performance of health professionals and institutions. Incentives associated

with peer approval, pride of workmanship and altruism often take

precedence over the desire for financial gain or fear of penalties (2).

Nonetheless, reimbursement incentives arc unquestionably serving to

drive health costs ever upward, without penally or brake. Recognizing

this, some third-party payers are assuming a more active role in deciding

what services should be delivered, where, and by whom. Some Blue

CrossBlue Shield plans, for example, have moved to eliminate coverage

of questionable or outdated procedures. The Health Care Financing

Administration (HCFA), the Federal Government's third-party- payment

agency. now seeks professional guidance from the Public Health Service

(PHS) on the efficacy and safety of some new medical procedures before

making coverage decisions. These and similar movs have been taken largely with an eye toward

cost control. There is another problem with the current third-party

payment system that is even more detrimental to primary care of all types,

and particularly care for children and pregnant women, and that is the

bias in prevailing third-party reimbursements that favors hospital-based,

high-technology care provided by specialists. Services rendered in the

hospital are more likely to be covered than those rendered in the

physician's office. Physicians are paid more for the use of technologic

procedures than for examining and talking with a patient, and more for

320

322
the same procedure if they are specialists than if they are generalists. The disparity in re:enbursement has been growing, not diminishing. in recent years. B 975 and 1978, reimbursements from Blue. Shield of

Washing s c" ror the performance of technical procedures increased by more r..-- 'cent, although reimbursements for physician time with pada*. went up only 20 percent (3). One vv....huh of this bias toward technology-oriented care is that

physicians have been encouraged to master and utilize new and often

valuable technologies and procedures, and hospitals have been encour- aged to purchase and utilize innovative but often costly new equipment. However,, current reimbursement biases adversely affect the income of primary care physicians, including those who serve children and pregnant women; discourage the provision of time-consuming services such as counseling which are central to disease prevention and health promotion; sometimes encourage-hospitalization of patients, whether truly necessary or not; and disproportionately reward specialization on the part of providers. Today, the options of those who need health care services and those who provide them are often severely curtailed by the coverage decisions and other policy determinations of third-party payers. For example, there

are a number of services that many insurance plans will pay for only if the patient is hospitalized, even if those services can -be provided safely, effectively, and far more economically on an outpatient basis. In other

instances, services involved in the treatment of a disease may be' fully

covered but those that could prevent the very same disease are ineligible

for paymerni. Or to cite a third common situation, third-party payers will reimburse physicians ai a far higher,rate for technology-intensive diagnosis and treatment approaches for a "head and hands"

approach to health problems. In theory, none of these payment policies dictates the decisions that physicians and their patients will make about

the nature and location of health services provided. In practice, however, that is precisely the effect A number of respected researchers and health policy leaders have

assessed the ramifications of the current reimbursement system and have described the problems-arising from it. To cite but a few: The Task Force on Pediatric Education concluded the present system "discourages the time-consuming counseling essential in

effective diagnosis and treatment of biosocial and developmental problems"... (4). The National Council. on Health Planning and Development found that results of the current system include an "over-reliance on existing modalities originally designed for acute, inpatient care, for serving the chronically ill, and diagnosing the ambulant patient," as well as a "failure on the part of providers to consider

the relationship between the costs of utilization decisions and the benefits that may be gained" (5). The Association of American Medical Colleges said the system

discourages physicians. from pursuing careers in primary care because present policies "pay a premium for diagnostic and

therapeutic procedures and undervalue basic clinical knowledge

321
and skills." The AAMC report said: "Paymen. for the professional time invested in listening to, examining and counseling patients

is so inadequate that generalists must keep their interval of time

with each patient to a minimum and utilize it to order or perform

procedures" (6). The Graduate Medical Education National Advisory Committee

found the present system "favors the use of tests and procedures, rather than careful patient histories. physical examinations,

patient education and counseling; .favors hospitalization rather

than ambulatory care; influences the future practice habits of

physicians in training; discourages teaching in ambulatory settings; favors the selection of a site to practice in relatively more

affluent areas or where satisfactory reimbursement levels are in

place; and favors the perpetuation of present circumstances into

the future and acts as a deterrent to change in present methods of

health care Delivery, e.g., makes it difficult for Medicaid patients

to obtain private medical services and deters the use of nonphysiclan providers of health services. Indeed, it would appear' that

cut-rent reimbursement practices tend to contradict manpower

policy objectives explicitly advanced in existing health professions

legislation at the national lever (7). Because current reimbursement practices and policies work against.

rather than in support .of, some of the health care objectives for children

and pregnant women that we deem essential, the Panel recommends that

all purchasers of health insurance and all public and private third-party

payers, in collaboration with health care providers, take steps to modify

and create alternatives to prevailing methods of reimbursing health

professionals and institutions, and to encourage their use. Such modifications and alternatives should include:

. Revision of payment schedules and methods to more adequately

reflect the value of counseling and other time-intensive aspects of

primary care and to decrease inappropriate incentives for performing technical procedures. Various methods-of paying for packages of services, such as lump

sum payments for specified services, annual or monthly retainer

fees, and capitation payments and salaries for providers working

in organized settings. Methods of reimbursement that offer equal incentives for training

health professionals in ambulatory care and in-patient settings.

The negotiation of fee schedules by third-party payers offers an

op rtunity for specifying the range of services that shall be covered and

for king agreement on an appropriate fee for each. As experience with

Medicaid suggests, however, it is important that fee levels be adequate to

in-duce providers to offer such services.

There are a number of ways in which third-party payers can create

incentives that will enhance the availability, accessibility and appropriate

utilization of the services the Panel has identified as needed by children

and pregnant women, including alterations in reimbursement levels for

specific services to reflect more accurately the significance of each for the

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promotion and maintenance of health, and the time required to perform

each service effectively. A variety of payment methods that are alternatives to fees-for-service actually have double benefits; they serve the goal of cost control so

important in the current inflationary era, and they may enhance the

integration of health promotion and disease prevention activities with

acute care. These payment methods include it mp sum payments such as

those made to obstetricians for prenatal, delivery and postnatal care; retainers to providers that cover a specified range of services for all patients who come to a physician for care over a period of time; capitation payments to cover all care needed by a fixed number of patients; and

provider salaries, usually in organized settings, that do not vary according

to the number of services provided. The importance of modifying reimbursement practices to support the

training of health professionals in ambulatory settings is discussed in the

section of hospital outpatient departments in chapter 6 and specific proposals for developing better methods of reimbursement toward this end are outlined there. Although hospital OPD's are the most important single setting for training of health professionals in ambulatory care, similar issues of reimbursement to support training apply in other settings, including health departments, community health centers, and health maintenance organizations.

Toward a More Rational basis for Payment Decisions

fr If such modifications are to be made, and the health care needs of all Americansespecially mothers and childrenare to be more appropri- ately and adequately addressed in the future, then third-party payers, whether public or private, will need systematic expert guidance on which

services are in fact needed, who is qualified to provide them, and under what circumstances or in what settings. As we have discussed in chapter 5, the Panel recommends that a Board on Health Services Standards (or cow- irtiiun of existing groups) be

established to fulfill .three functions: first, to review and continually refine our understanding of what health services should be available to mothers

and children in light of new knowledge and changing health problems; second, to provide information and guidance to all third-party payers and

others regarding the efficacy, effectiveness, and appropriate use of a given

service or set of services, and the circumstances under which such services should be financed; and third, to provide information to all third-party payers and financers of health care regarding the likely effects of their payment policies and practices on the availability of needed services, professional personnel, facilities, ,and other components of the health care

system. This third function is perhaps the most challenging of the board's duties. At present, our knowledge about, for example, the way that various coverage and reimbursement policies shape the quality of care is scant. Even those involved in health services research and evaluation do not

typically go beyond ad hoc descriptive studies to systematic assessments

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of how payment practices might be altered to promote the availability, accessibility, and appropriate use of various types of health services.

The board envisioned by the Panel would attempt such comprehensive, systematic analysis, in addition to its other tasks, with the aim of

providing information for use by third-party payers in designing their policies and practices: by States in the certification of private health

insurance plans (discussed below); and by businesses, labor unions, and

others who choose and/or pay for group insurance plans. Among the

broad scale analyses that we envision the board undertaking we call special attention to two sets of reimbursement issues that should have a

very high priority when the board or similar mechanism is established:

What changes should be made in current reimbursement differentials to encourage the provision of health services to those most in

need? Should third-party payers discontinue geographic differentials based on usual and customary fees that go beyond the

differential costs of delivering services? Should third-party payers

consider establishing higher payment levels for the provision of

primL, -, care services in underserved areas? Can sea Aces, functions and quality of care be defined with enough

precision to allow reimbursement for a given service to be the

same, regardless of who provides that service, as long as the provider meets certain standards and qualifications? Should

reimbursement be made at the level appropriate for the provider

who possesses the minimum training deemed necessary to provide

the service? Would such reimbursement practices be successful in

encouraging the provision of time-intensive aspects of primary care that would be characterized by both high quality and

reasonable cost?

IMPROVING PRIVATE HEALTH INSURANCE

About four-fifths of all Americans, some 181.5 million in 1978, have

some private health insurance coverage for hospital expenses and nearly

three-quarters. or 164.1 million, are also covered for some physicians' fees

(8).The scope and reach of private health insurance give such plans

considerable potential for advancing maternal and child health goals that

depend upon removal of financial barriers, but this potential remains to be

fulfilled. Private insurance plans, at present, do not generally place high

priority on the kinds c-f benefits the Panel deems essential for comprehensive health care of children and pregnant women. Coverage is extensive

for inpatient hospital care, but less so for ambulatory carewhich

comprises the bulk of services needed by children and mothers. Preventive

careagain crucial for maternal and child healthis generally excluded.

Coverage for any type of care for emotionally disturbed children is very

limited.

Regardless of such limitations in private insurance, the fact remains that

such coverage is the predominant way Americans finance their health

care. Thus, the Panel has considered various ways in which this system

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-)G
SO

40

No insprance Private insurance .Medicaid Other programs or Medicare

000 000$9,999 El $10.000. E-J

$14,999 , $6 - Health car* coverage of children and youths under 18 years of age, according to family income: United States, 1976

Noel= Private leseurance includes those who have other coverage (e.g., Medicaid) as well.

Medicare includes those with no other public or private cowers... Medicaid includes those without plum. insaranc at Medicare and reported either 1) receipt of Medicaid services in

the previous year. 2) ity for Medicaid as a reason for not having other coverage. or 3) receipt of benefit payments under AFDC or SS, in the pest year. Other programs include

CHAMPUL Yeterees's Administration, privetp surgical coverage only and professional

courawy as emeeores for holding no other type of public or private coverage. To avoid multiple

counting, inch individual was assigned to one category only. Parsons with both privets

laairessoe and Medicere for example, were placed in the private insuranc tegory- As a

restat. Medrecire and 1141scliceid estimetes do not correspond to taunts available from them
might be strengthened. Currently, businesses, tabor unions, and individual

purchasers of private health insurance have no systematic way to evaluate

the coverage offered by various private insurance plans and to rate

alternatives in terms of their contribution to health status, The Panel has concluded that creation of a voluntary and advisory

certification process. a "seal of approval" in effect, would go far toward

promoting the availability of private health insurance plans that more

adequately meet the health care needs of children and pregnant women,

by helping to inform purchasers of insurance of the relative strengths of

different insurance plans. A similar conclusion was reached by the

Congress after it examined so-called "medi-gap" insurance, or policies

sold to supplement Medicare coverage. The Panel recommends that States institute a voluntary seal-of-approval process, whereby state insurance commissioners review private insurance policies approved for marketing in their States and grant certification

to those that adequately lnect the health needs of children and pregnant

women. In determining which policies merit certification, the States

should utilize criteria advanced by the proposed Board ofHealth Services

Standards. If a State fails to perform the certification function, the Federal

Government should be authorized to do so. Sh3uld the board or its

equivalent not yet be functioning, we urge that the Secretary of Health

and Human Services request the Institute of Medicine, or some other

suitable body. in concert with appropriate professional groups and

consumers, to develop such guidelines. As a contribution to the development of such guidelines, we note below.

several characteristics of private health insurance that might forma the

basis of certification: Coverage of all basic essential services (including prenatal,

delivery and postnatal care; comprehensive care for children

through age 5; and family planning services), plus such other

services identified by the Panel as "needed" as can be provided

with reasonable assurance of quality, effectiveness and economy

under existing or clearly definable circumstances.

Coverage not only Of the employed or enrolled individual, but also

of spouses and all dependent children to age 18..

Coverage for the entire family, without additional premium

payments from the family: for 6 months or until comparable

coverage is obtained from another source after termination of the

enrollee's employment or death, or the divorce or separation from

the enrollee in the case of family members.

Agreement to reimburse all qualified providers in accordance with

guidelines provided by the board or other mechanism designated

to perform this function. The standards for certification should not be set so high that few

insurers offer. or few purchasers select, the certified plans. The Panel's

principal objective is to ensure that a large proportion of children and

pregnant women gain coverage from improved private insurance plans

within a reasonable period of timeperhaps 2 or 3 years after the

establishment of certification standards.

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Granting certification to policies that meet or exceed guidelines for providing adequate coverage to mothers and children is only a first step. The Panel urges labor and employer groups to give high priority to the

r...crchase of certified plans; Federal, State and local governments are

'1-.-ernselves major employers and can take a leadership role by making

such plans available to their own employees and their families. Private health insurers ihould not only make such policies available but also market them aggriltssively. In addition, State and Federal Governments and such private groups as the Consumers' Union should publicize the

criteria used in the certification process and the results of State review and

evaluation so that businesses, labor groups and others responsible for purchasing group health insurance plans will be aware of the determinations.

The Panel considered proposals to require that insurers offer health

policies meeting certification criteria, and even proposals to require that employers offer certified policies to all their employees and families. Clearly, such a mandatory approach would be more likely to achieve our objective of improving private health insurance coverage of services needed by mothers and children. We believe, however, that it is preferable

to avoid the controversy likely to arise over a mandatory approach and to

see if our objectives can indeed be accomplished through a voluntary, advisory certification process.

IMPROVING MEDICAID

The Medicaid program is the Nation's principal system for financing

health care for the non-aged poor. Created in 1965 in the same legislation

as Medicare, it has the following major statutory characteristics: Open-ended Federal matching of State expenditures, at a rate of 50 to 78 percent for benefits and 50 percent for most administrative expenses. Broad State discretion in setting income and assets tests for eligibility, and in specifying benefits to be covered. State administration under broad Federal guidelines. Combined Federal-State Medicaid outlays reached an estimated $21.4

billion in fiscal 1979, of which the Federal share was $12.1 billion and the State share $9.3 billion. In that fiscal year, the program served some 10.7 million individuals under age- 21 and paid for Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) ass_ essmentsfor some 2.14

million children.

The combination in Medicaid legislation of State autonomy in setting

benefits, eligibility, and provider participation policies, and the provision of few incentives for meeting needs adequately, results in enormous variations among States in how the program functions, and tremendous economic hardships and barriers to needed care for millions of families. Twenty-nine States do- not allow children of two-parer.* families to

participate 'in Medicaid, no matter how poor the family. In 19 States, women who are pregnant for the first time do not qualify for prenatal benefits. Income standards for eligibility are so low is many States (a

327
family of four in Tennessee is allowed a maximum income of $2,400 a year

to qualify) that the result, in combination with other restrictive requirements, is that only about two-thirds of all poor children are eligible; an

estimated 7. million children who meet Federal criteria of poverty cannot

receive any Medicaid benefits at all (9).

There is considerable evidence that without changes in Federal

legislation, the situation will rapidly become worse. Already, between 1970

and 1979, the percent of poor people with Medicaid cards declined in 33

States. Several State legislatures are considering cutting back on eligibility,

including denying Medicaid benefits to first-time pregnant women who

are now eligible for Medicaid in those States. Projections made for the R.

W. Johnson Foundation indicate that if current trends continue, within 3

years, over 750,000 persons now eligible for Medicaid would be made

ineligible as a result of more restrictive requirements (10)_

Medicaid suffers severely from the problems common to any program

focused exclusively on the poorincomplete acceptance by both intended

beneficiaries and providers of service, hostility from many of the nonpoor,

and constant pressures for service or eligibility cutbacks in times of fiscal

constraint. In addition, joint Federal-State responsibility for the program

leaves no single level or unit of government fully accountable.

Gaps and turnover in eligibility account for much of the inadequacy of

o Medicaid in general, and the EPSDT program in particular, in addressing

the health care needs of poor children_ Only 20 States extend Medicaid

eligibility to all poor children regardless of family composition, employment, or marital status, and only 33 cover children in medically indigent

families, or those with enough income to meet everyday living costs except

for health care (9). Moreover, because family economic circumstances

can change significantly from year to year and indeed within a single year,

poor people constantly lose or gain Medicaid eligibility. In 1977, some 35

percent of children covered by EPSDT lost eligibility during the year (11).

Such abrupt shifts in eligibility can seriously interfere with continuity of

health care. Although EPSDT is now the largest health care financing program for

poor children, it has not reached its potential. Many States do not

reimburse for some of the diagnostic and treatment services indicated by

screening results as being needed, nor do they always follow up screening

assessments to make sure that detected problems are tre.: :c.-.d. Various

administrative barriers limit or prevent use of health maintenance

orgai7Ations and other organized settings by many Medicaid-eligible

families. Low fees, red tape, and other problems combine to discourage

par";eipation in Medicaid by many physicians and dentists. According to

DHHS figures, in some States as few as 30 percent of physicians

participated in Medicaid in 1973-75. Nationally, just 41 percent of all

dentists and about half of all physicians participated (12). The rate of

participation among pediatricians is considerably higher; recent data

indicate 80 percent serve at least some Medicaid patients (13). However,

the fact that a physician "participates" in Medicaid does not necessarily

mean he or she cares for any significant number of publicly subsidized

patients. In one State, for example, the data indicate that approximately

15 percent of "participating" physicians filed more than 75 percent of all

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Medicaid claims. There is evidence the situation may be getting worse. A Michigan survey found that the percentage of physicians accepting new Medicaid patients had dropped from 83.5 percent `o 68.3 percc-n.t (11). Some States have been slow to implement the EPSDT program because of the costs involved., even though the preventive effects of the program

offer important long-term health benefits and the possibility of rower costs over the long run. With EPSDT, as with Medicaid in general, budget considerations all too often tend to outweigh considerations of beneficiary needs. Although the Federal Government is responsible for enforcement of program standards, the penalty for State failure to meet standards is the withholding of Federal fundsa_ penalty that punishes the families the Federal Government is seeking to aid. In volume II of this report, Medicaid. including the EPSDT program, is discussed in greater detail and a number of more specific recommendations are made for its improvement ( 14). In this chapter, the Panel would

simply note that even though Medicaid is and will remain an imperfect

instrument at best for addressing the health care needs of poor children

and pregnant women, many current problems with the program could be ameliorated without changing its basic structure as a Federal-State program focused on the poor. The most important improvements are

incorporated in several versions of the Child Health Assurance Program

(CHAP) amendments currently pending before Congress; these improve- ments should be promptly enacted. Specifically, the Panel recommends

immediate action on the following changes in the Medicaid program: Establishment by Federal legislation of a uniform national income and resources standard, and the extension of eligibility to all children and pregnant women who meet that test, regardless of

family status or other conditions. Coverage of a uniform national package of services, as outlined in

the recommendations contained in volume II ( 14). Inclusion of all qualified providers, using the reimbursement mechanisms and rate structures that will ensure availability of comprehensive high-quality care for all eligible children and

pregnant women. Federal incentives to the States to provide expanded access to

services and appropriate continuity ot'care.

NATIONAL HEALTH FINANCING PROGRAMS

We have discussed the ways in which third-party payment policies and

practices should be changed to promote the availability, accessibility, and

appropriate utilization of needed services for children and pregnant women. and how Medicaid and private insurance should be immediately

improved to remove financial barriers to needed care for more families. and to protect people from the economic burdens imposed by high medical bills.

However, even if the improvements we recommend are made. some people will remain uncovered by any form of health insurance, public or private, many health care providers will continue to be unavailable to the

329

331
poor, and some middle class parents will continue to be forced to choose

between health services for their children and the purchase of other

necessities.

There is no way to fit existing financing programs together so that many

of those most in need of protection will not fall through the cracks, so that

a separate and unequal system of health care for the poor will not be

perpetuated, and so that all needed health services will be available and

affordable to all children and pregnant women, in the absence of a

national health financing program. It is the Panel's conviction that the health care needs of children and

pregnant women will be best served over the long run by a national health

financing program that ensures universal entitlement to all. Regardless of

how responsibility for funding and administering such a program is

allocated between the public and private sectors, all Americans should be

included without differentiation on the basis of employment status,

economic resources, family structure, orresidence.

Under a universal entitlement program, children and all women share

in the general eligibility of the population. There is no need to wrestle with

complex and frustrating questions of at what age or situation children or

women have a more or less compelling need for services the Panel has

identified as essential. There is no point at which benefits are cut off, no

arbitrary dividing line between those who are eligible for benefits and

those who are not, and no barriers to the use of services as a result of

cumbersome, time-consuming and often demeaning eligibility determination procedures, or as a result of fees imposed at the time of service.

The Panel realizes there is a wide diversity of opinion in the Nation

about the speed with which a comprehensive national health insurance

program can be enacted and implemented_ The Panel considered differing

views on the best way to begin such a program if a phased approach is

adopted, and a majority concluded that if a universal national health plan

cannot be put in place relatively soon, the Panel urges enactment of

national health insurance for pregnant women and for children to age 18.

If it proves necessary to phase in eligibility even for this population, the

Panel recommends starting with a program covering all pregnant women

and all children through age 5.4'

We consider this last option the barest minimum and irreducible The

consequences ofinadequate prenatal care can be so severe, for both infant

and mother, that any financing program to benefit child health must begin

with adequate care for pregnant women, including comprehensive

prenatal care, beginning early in pregnancy- Similarly, coverage of health

care costs in infancy and early childhood is essential. Prompt intervention

in problems that emerge in the early years after birth, and preventive care

during that period, are likely to be more effective than interventions

commencing during school years. Although it is undesirable and detrimental to set up arbitrary age categories for eligibility purposes, the Panel

would urge top priority to coverage of infants and preschool children if an

age cutoff is imposed. The critical importance of both prenatal care and

"'One Panel member dissents from this recommendation (see appendix D).

330 332
comprehensive care for children through age 5 is discussed fully in chapter 5-

The Panel is well aware that many individuals concerned about

improving the health of children and pregnant women would question the wisdom of advocating universal, comprehensive national health insurance

in an era of tightly constrained fiscal resources, urging instead that better programs be crafted for those in greatest need. We recognize the

legitimacy of the view that in the absence of a program covering all Americans, the gradual extension of coverage should continue to be based on need, and that therefore the next logical step after enactment of the

improvements in Medicaid that the Panel has proposed should be coverage of all poor and near-poor adults. The health status and

utilization of care of such people is adversely affected by financial barriers; many of them are parents, or women who may become pregnant, and their health is therefore of special significance for a group whose mandate is the improvement of child health. After serious consideration, however, we have concluded that a

program of universal entitlement is decisively preferable to one directed

solely at the poor, because when eligibility is tied to poverty status, the

results are so detrimental in terms of quality, continuity and appropriate use of care, incentives to economic independence, public support and

administrative efficiency, that the price of targeting resources, in this

instance, is too high. No matter how they are structured, means tests inevitably create barriers that prevent or discourage many who need health service- obtaining them. Eligibility tied to poverty status can be lost as soon as the program participant succeeds in gaining a little ground economically

even if the gains are tenuous, temporary or both. Such on-again, off -again

eligibility, which is characteristic of the current Medicaid program, not only interferes seriously with the continuity of health care, it also serves to

discourage work and self-improvement efforts. Furthermore, even when programs are well designed and administered with sensitivity, many

people find it humiliating and demeaning to seek assistance to which they

are entitled only because they are poor.. Some, indeed, refuse to do so

regardless of how acute their need may be. The feelings of insecurity, defensiveness, and embarrassment experi- enced by many beneficiaries of programs targeted solely for the poor are not found among beneficiaries of such universal entitlement programs as Social Security and Medicare, where eligibility is tied to age and other objective and unchanging factors rather than income.. It is not only the beneficiaries who feel differently about such universal programs, it is

society as a whole. One need only contrast the level of public support, and

consequently political support, that exists for Social Security and Medicare with that to be found for Aid to Families with Dependent Children (AFDC) and Medicaid.

- Because of such public attitudes, and because of the inescapable problems inherent in any means test for eligibility, it will always be difficult, if not impossible, to enact a health care program for the poor and only the poor that fully meets the health care needs of the target population, and to keep it funded at the necessary levels. As forre..:..3- Social

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333
Security Commissioner Robert Ball has written. The best way to developa program for low-income people that is well administered and respectful

of human dignity is to include low-income people in exactly the same

program that serves the rest. -)f the populationnot simply an incometested program administered by an agency that serves the general

population. Programs designed solely for the poor do not get the same

sustained interest and support as programs that serve us all Whenever the

budget is tight, it is the programs for the poor that are likely to suffer"

(15)- There are three additional problems with health care programs targeted

for the poor that deserve mention here. The first is the sizable

administrative burden involved in creating and applying eligibility tests to

millions of people each year. and the considerable costs that go with it.

The second is the fact that programs limited to the poor lose most of the

opportunities that are offered by universal coverageeven for mothers

and children alone--to achieve a more rational allocation of resources

and effective controls over costs. The third, and most troubling, drawback

is the tendency of such programs to create and perpetuate two separate

and unequal classes of health care. Thus, although one of the goals of

Medicaid was "... to provide the poor with the same access as the rich to

mainstream medical care," data from national household surveys indicate

that the proportion of low-income persons with a private physician as a

regular source of health care actually declined following the enactment of

Medicaid, from 63 percent in 1963 to 56 percent in 1970. The use by the

poor of public sector sources of care increased during that time (16).

Although taking no position on the issue of how a national health

insur-...nce program should be financed, the Panel is aware that if a

program involving a mix of public and private financing is adopted, some

way of determining the source of contributions for beneficiaries would

ha ,e to be devised. We believe this could be done in a manner that avoids

the major problems of means tests discussed above.

For all these reasons, we therefore -encourage creation of an advocacy

coalition to press for enactment of a universal maternal and child health

insurance program. Those whose primary concern is the health care of

children and those whose principal focus is on national health insurance

for all should find ample grounds for cooperation in support of such a

program. The former should welcome an approach to child health that

eliminates gaps in coverage and discontinuities in eligibility status; the

latter should take heart from a major exsension of the universal social

insurance approach to health care beyond its present beachhead,

Medicare. Whether a national health insurance plan applies to all Americans or

only to children and pregnant women, all services defined by the Panel as

"needed" should over the long run be covered in full, without cost sharing

by the patient or family. All basic essentialservices (prenatal, delivery and

postnatal care; comprehensive care for children through age 5 and family

planning services) must be so covered from the inception of any plan. The

program should also cover, from its inception, such other "needed"

services as can be provided with reasonable assurance of quality,

332 3 3.1
effectivenesss, and economy under existing or _dearly definable circum- stances.°

As we have said before, the three clusters of services we have defined as

basic and essential are so crucial to the health of children and pregnant women that all barriers, financial and otherwise, must be removed to

ensure they are widely available and accessible. Those services that are difficult to define precisely, or that raise other special problems, would be referred to the proposed Board on Health Services Standards for guidance

regarding the circumstances in which they should be covered. The Panel recognizes there will be controversy about our goal that over time all needed services be covered without cost sharing by the patient or family. It is unquestionably true that cost-sharing devices such as deductibles or copayments hold down the costs incurred by third-party payers, whether public or private. They do so in part by deterring

utilization, and in part by shifting those costs onto the patient and his or her family. Unfortunately, there is no way to ensure that only "unneces- sary' utilization of health services will be deterred by a requirement that

the patient foot part of the bill_ Many a stomach ache will pass of its own accord without the expensive assessment of a physician, but a small percentage will turn out to be acute appendicitis or some other condition

requiring immediate medical intervention. The mother who decides against a trip to the doctor for a child with a stomach ache because she will have to pay some part of the bill is ill-served by a health plan that requires patient cost sharing. The deterrent effect is even stronger in the case of preventive care, where no immediate need for services may be perceived .by the patient or parent. Yet it is precisely these services of disease prevention and health promotion that ap, essential to the health of mothers and children, as we have repeatedly stressed.. Although studies indicate the poor are most likely to be deterred from

seeking care by cost-sharing requirements, they are not alone. Indeed, there are waysalbeit cumbersome and expensive to administerto waive such requirements for individuals or families meeting various means

tests. People of all income levels are usually reluctant to spend money "unnecessarily," and may not recognize the full value of some types of care or the medical need for others. Adolescents, for example, have only

limited access to money they can spend as they wish and are especially

likely to be discouraged from seeking health careincluding important services like family planning, venereal disease examination, and crisis counselingif they must pay some or all of the cost Deductibles and

copayment requirements generally complicate and add to the cost of

insurance administration, eating up funds that could otherwise be applied directly to payments for services. Such requirements make it difficult for patients and providers to know when benefits are due or how much they will be. If they are to be adjusted or waived for the poor, means tests are necessaryand we have already described our objections to such tests. There are, of course, individuals who make excessive visits for medical care. However, studies in Canada and of prepaid plans in this country

One Panel member dissents from this recommendation (see appendix D).

333 335
indicate there is no increase in numbers of "overutilizers" when medical

care becomes "free" (17. 18). In fact, most costly forms of overutilization

are the product not of consumer behavior but of provider decisions

excessive prescription-writing, unnecessary surgery, inappropriate hospitalization and excessive use of laboratory, radiologic, and other diagnostic

procedures. In the words of Drs. Jonathan B. Kotch and C. Arden Miller

of the University of North Carolina. "Cost-sharing places an economic

burden on consumers for a problem which is generated by providers and

which might better be dealt with by means of standard setting and quality

control" (19). A number of the national health plans put forward in recent years have

been classified as "catastrophic" or "major medical" health insurance.

These would cover health care expenses only after the patient or family

has satisfied a large deductible. The deductible may be expressed in a

variety of waystotal dollars, percentage of income, number of units of

services used or combinations of all of them_ Most such proposals contain

means test provisions and special coverage for the poor.

Although any national health financing program must include coverage

of catastrophic, or major medical, expenses, the Panel opposes a program

limited to such coverage because it would do nothing to enhance the

availability and use of the health services most needed by children and

pregnant women. Indeed, as economist Alain Enthoven has written on the

subject of such a "major risk" approach: The effect would be to pull medical resources out of ordinary

"primary" care and into the care of "catastrophic" cases, to an

extent even greater than occurs today. This would mean less

emphasis on activities that can help prevent disease and add

significantly to the quality of life, and more emphasis on care that

offers small or negligible net benefits at very great cost- It would

mean a reallocation of health care resources toward categories of

care that are probably accounting for too high a share of health care

expenditures now. It wouldn't solve the problem of the irrational

incentives. It would merely focus them on the most costly cases and

forms of care (20). For all of these reasons, we reiterate our support for a national health

financing program that provides universal entitlement and coverage

without cost-sharing requirements_

IMPROVING GRANT PROGRAMS

Grant programs are today, and will continue to be, an important

mechanism in a national strategy to assure that needed health services will

be available to all mothers and children_

Although the Panel looks forward to the day when virtually all personal

health services for children and pregnant women will be financed through

a national health insurance program, grant programs will continue to play

a major role until that time, and with some modifications, will be an

essential accompaniment to national health insurance after its enactment.

334 336
Now and in the fixture, to help assure the availability and accessibility

of individualhcalth services, the Panel supports the use of expanded grant programs to: Subsidize the development ofresources in geographic areas where

the personae, facilities or delivery mecbsinisrrns to provide needed services are unavailable, and to finance demonstrations of new and better ways to deliver needed services. Pay for needed services that are clearly more appropriately

financed through grant programs than through third-party pay- ments, and for those where more information is still needed

regarding the most effective methods of payment. Pay for comprehensive services for persons such as handicapped children who have distinctive service needs best met through special systems or programs. Pay for needed services for those persons lacking other sources of payment, such as migrant workers, illegal immigrants and poor

individuals not eligible for Medicaid. Many Americans live in areas where needed services are not now

available and are not likely to 11ecome so under prevailing third-party

financing arrangements, or even with improved third-party payment programs. Inner city neighborhoods and isolated rural communities are

the prime examples. Although many innovative health care delivery and manpower programs were developed in thee 1960's and 1970's to make health services available in such communities, the supply as yet does not match the need. Considerable additional grant funding will be needed to

reach underserved populations ',through new or enlarged community

health centers, children and youth projects, hospital-based primary care units, comprehensive public health department programs, and similar projects. The Panel would urge that additional' funding be provided to organized health care delivery settings that meet the primary care unit attnl'utes described in chapter 6. Grant funds should also finance demonstrations of new and better ways of organi4ing and delivering health services to children and pregnant women. First priority in the

award of biga resource development and demonstration grants should go

to areas wi greatest need. The services rendered in delivery settings established with grant funds

should be financed increasingly over time with third-party payments. The efforts undertaken jointly in recent years by the Health Care Financing Administration and the Public Health Service to enable facilities that are

financed in part by grants toarapply for and obtain reimbursement from Medicaid and other third-party payers should continue and be intensified

and expanded. In the absence of a national health financing program covering all aiildren and pregnant women, grant funding is also needed for financing =Lain of the services the Panel has identified as "needed," including and Seginning with the minimum basic services (prenatal, delivery, and 3ostnatal care; comprehensive care through age 5, family planning

cervices) for those individuals with no other source of payment, public or

,rivate. Grants for this purpose can go to various service providers, upplemeziting existing programs and sources of funiils.

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33 7
The Panel also recommends the use of grant funding for certain

services, such as preventive dental care, which can be rendered most

economically and with the greatest chance of reaching everyone in the

target population when payment flows directly from a granting agency to

the service provider in a lump sum.

Other services have been identified by the Panel as essential, but most

likely to be effectively rendered under circumscribed conditions. Counseling and support to help a pregnant woman stop drinking or smoking

would be an example. While the proposed Board of Health Services

Standards, or a similar mechanism, is seeking to define precisely how such

services should be delivered and by whom, they are best funded by lumpsum grants to providers who make systematic provision for onsite review

of quality and effectiveness. Finally, there are services that assist individuals or groups with special,

access problems to .make timely and appropriate use of health care

services. These access-related services, such as transportation, outreach

workers, translators, etc., are often most effectively funded through grants.

The need for grant programs to finance comprehensive services for

persons, such as handicapped children, who have distinctive services

needs that are best met through special systems or programs, and for

persons with special access problems, such as migrant workers and illegal

immigrants, is discussed in chapter 8._

POSSIBLE NEW REVENUE SOURCES

Because it may be difficult to count on significantly increased

appropriations for health and social service programs at either the Federal

or State level in the near future, the Panel has examined a number of

alternative means of raising funds for health services needed by children

and pregnant women. One we consider interesting enough to merit further

study is based on a pattern that is already in use in many States, in which

insurance regulations result in what is in effect a subsidy of high-risk

groups. We urge further consideration of proposals to require private

health insurance companies, and possibly Medicaid and certain other

Federal programs, to contribute a fixed amount of their income to be

utilized by the States for the following purposes:

To fund public health, preventive or other services not readily

insured.

To fund resource development activities, including planning, startup and initial operating grants for primary care services in

underserved areas, and services not otherwise available.

To subsidize third-party health insurance costs for those children

and pregnant women who could not otherwise afford such

insurance.

This proposal represents a way to raise funds for public purposes

through a method other than direct taxation, and a way to have

purchasers of insurance compensate for some of the weaknesses of

insurance. Thus, purchasers of dental insurance would help subsidize

fluoridation activitieswhich cannot be paid for through insurance, yet

336 338
arevital to good dental healthand reduce payments for dental benefits. Such an arrangement would also have the effect of limiting some of the problems caused by experience rating. There are, of course, significant problems with this proposal, including

the relationships such an approach implies betWeen private and public

sectors. In addition, raising funds in this way may be considerably less progressive in its taxing effects than a direct tax would be. Nonetheless, the Panel suggests this idea be studied further, along with any other

innovative revenue-raising proposals that may be advanced with a similar

potential for providing urgently needed new funds for improving maternal and child health.

REFERENCES AND NOTES

(1) US. Department of Health and Human Services. National Center for Health Services Research.

-Who Arc the Uninsured?' National Health Cue Expenditures Study. Data Preview Number I. \ September 1980.

(2)\Sigmeond, R.. "'Balance Between Competition and Regaiation: Incentives for Change.- Paper =at the Delbert L. Pugh hrvitatioesal Conference on Health Planning, Columbus. Ohio.

1, 1979.

(.7) .401\c"ey. T- W. and D. E. Rogers. "Medical Technology A Different View of the Contentious

Debasepeer Costa.- New England Journal of Medicine 301: 3-9. 14. December 27. 1979. (4) Tank Peace on Pediatric Education_ The Future of Paths' the Education. Evanston. M.: American

Acadenry 1ST/di:trim. 1978.

(5) U.S.. Departures. of Health and Human Services. Public Health Service. Productivity and Health.

Report at the 14ational Council on Health Planning and Development. DHHS Pub. No_ (HRA)

80-14022. Awes& \IWO°.

(6) Association of Ataeri-en Medical Colleges. Graduate Medical Education: Proposals for the

as/sties. Prepared bY9. , Task Force on Graduate Medical Education of the AAMC and Endorsed by the AAMC Council for the Dissemination and Discussion. A W co-cring Document.

Washington. D.C.. 191110.

(7) U.S. Department of Health and Human Services, Office of Graduate Medical Education- -Report of the Graduate Medical 'Education National Advisory Coszeiairtee."- Washington. D.C.: US.

Government Printing Office, September 1980

(2) Health Insurance Institute. Source Book of Health Insurance Dam. 1979-1911a Washington, D.C.:

Health Insurance Institute. 1980.

(9) Health Care Financing Administration. Data on the Medicaid Program: Eligibility. Services. Erpenditurec US. Department of Health. Education. and Welfare. Medicaid - Medicare Management Institute. Baltimore. Md. DHEW Pub. No. (HFCA) 79-20005. 1979.

(10) Clifton. G. Center for Health Policy Studies. Washington. D.C.: Unpublished data, 1980.

(11) Children's Defense Fund. EPSDT. Does It Spell Health Care for Poor Children? Washington. D.C.:

Children's Defense Fund. 1977_

(12) U.S. Department of Health. Education. and Welfare. Social and Rehabilitation Services. EPSDT.

The Poesibk Dream. p. 3. SRS.-FY 77024.973. 1977.

(13) Bentsett. R. D. and L.. S. Bell. -Projecting Pediatric Practice Patterns: Report of a Survey by the

Pediatric' Manpower Committee:" Part 2. Pediatrics 62, October 1978- [14) Select Panel for the Promotion of Child Health. Better Health for Our Children: A National

Straggly. Vol IL Washington. D.C.: US. Government Printing Office. 1981.

:15) Ball. R. M. Social Security Today and Taman-ow. New York: Columbia University Press, 1978.

:16) Orr. S. T. and C. A. Miller. -Utilization of Health Services by Poor Children Since the Advent of

Mechcaid." Medical Care. in press-

:1n National Center for Health Services Research. Some Effects of Quebec Health Insurance. U.S.

Department of Health. Education. and Welfare. Hyattsville. Md. DHEW Pub. No_ (PHS) 79-3238,

1979.

AI) Roghmann K. J.. J. Haggerty. and R. Lorenz. -Anticipated and Actual Effects of Medicaid on

the Medical-Care Pattern of Children.- New England Journal of Medicine 285: 1053-1057.

November 4. 1971-

337
(19) li-occh. .1. and C. A. Miller. -Nati Oland Health Issusance: Implications far ilsef..Health of Mothers

and Childran: In Maternal and Child Health Practices. H. Wanacc. E. Gold, and E. L. eds.

Speinead. IL: Charles C. Thomas. in prem.

(20) Eadioveo. A. C. Modish Plan. The Only Practical Solution to the Soaring-Ccot of Medical Care.

Reading, Maw: Addisoo-Wesbey publishing Co.. 1980.

338

s/0
SECTION W

OVERNMENTAL

tELATIONSHIPS

C:HAPTER 10

ST4UCTURING AIME SYSTEM

Preceding sections of this report outline a number of steps that should be taken to advance the health of children and pregnant women. These

recommendations span issues of health protection and promotion, define

services that should be available to these populations, and discuss problems in the organization of health services. We call, for example, for

the assurance of universal access to a set of basic, essential services; for

the extension and improvement of regionalized programs of perinatal care, tertiary care centers for specific chronic illnesses and handicapping

conditions, and emergency care networks; for the development of community-based programs identifying and meeting the health care needs of children with physical, mental and emotional impairments and chronic

illnesses; and for the development of a broad range of efforts in preventive

care and health promotion_

It is our conviction that many of these objectives can be reached without the creation of major new public programs. What is needed, instead, is a concerted effort to coordinate existing programs, clarify

responsibilities of those making policy and administering programs, and achieve a broider consensus on the importance of maternal and child

health generally and of certain needed steps specifically. Achieving better coordination and program management will not be easy in a mixed

private and public health care system such as ours, where policy control is diffused across many different providers, professional groups and levels of government The pluralism of provider arrangements we specifically

advocate in chapter 6 complicates greatly the task of bringing more coherence to the delivery of health care services; and intersecting

responsibilities of local, State. and Federal Government make policy

formation and program administration complex. However, in spite of such

constraints, the Panel believes that the joint effectiveness of existing

programs and activities that _bear on maternal and ld health can be

greatly increased. We have been deeply impressed throughout our hearings, site visits, and

analyses with the widespread concern regarding problems of program

fragmentation and splintering; of insufficient clarity in the division of responsibility among local, State, and Federal authorities; and of

inadequate local service coordination. These problems are creating both

confusion and gaps in the delivery of services to mothers and children, particularly the most vulnerable among them In - the face of sucla problems, this chapter takes up the complex issue of how priv

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providers. 'prof tions, and public officials' at all levels of

government should wor together in mak .ng needed changes.

Because the eolution of Federal programs for mothers and children

has been a very signifi' cantthough often inadvertentfactor in creating

complecilies of.prograT ipanagement and policy formation at the State

level, it is useful to review briefly the major changes in Federal maternal

and child health policy which have taken place over the past 75 years, and

to see how these have both assisted and caused difficulties for the States.

The following, section summarizes pertinent developments.

AN HISTORICAL PERSPECTIVE

Federal programs for mothers and children usually have developed by

small incremental steps. However, there have been at least four times

when the Federal maternal and child health programs of the day

determined to be inadequate, precipitating a major restructuring o

system. These periods of major ferment led to the creation of

Children's Bureau in 1912, the enactment of the Sheppard Towner Act

1921, the passage of Title V of the Social Security Act in 1935, and the

passage of various targeted health service programs in the 1960's.

The Children's Bureau was created in 1912 because a small group of

wise and foresighted people were concerned that the Nation's mothers and

children were not receiving needed health services. After it was established, one of its first tasks was to identify the major health needs of

special groups of mothers and children: children in families receiving

public aid, children deprived of parental care,. mothers in industry,

children in day care, children in juvenile courts, children in institutional

care, and illegitimate children. Not only did the Children's Bureau study

the health problems of these &-oups, it was also instrumental in promoting

legislation to correct the identified problems. It prompted enactment of

State laws to improve the care of the institutionalized dependent child,

State laws to Tcreate juvenile justice legislation, and State laws concerning

illegitimacy. It is interesting to note that with few exceptions, the

Children's Bureau did not create Federal programs but encouraged the

Stalls to pass legislation creating their own programs, indicating the

dominance of State government over Federal Government in human

service programs at that time. Before the creation of the Children's Bureau, the Federal Government

accepted no responsibility for the health of mothers and children. The

creation of the Children's Bureau changed that, but the responsibilities

given to the Bureau were actually quite modest The Bureau's primary

duty was "to investigate and report" aboiir the health of mothers and

childrap. From that simple mandate, the/Nation's complex public policy

concerning Federal and State responsibilities for mothers and children has

evolved. Although the creation of the Children's Bureau was an important step

forward, it was really no more than an office in the Federal Government

that served an advocacy role for mothers and children. Its limited staff

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a.
c

was involved primarily in collecting information about the health status of mothers and children, and relied heavily on an advisory committee for its policy determination and lobbying activities. The next turning point in maternal and child health legislation was the passage of the Sheppard Towner Act. The Children's Bureau helped

sponsor this legislation, which reflected concern about the high infant mortality rates that existed among poor infants in cities. The Sheppard Towner Act was an important milestone in the evolutionary development of public policy concerning Federal and State responsibility for the provision of health services f-_-,A mothers and children, because it

established that the Federal Covernment could encourage States, through

. grant-in-aid programs, to pr,L,ride directhealth services. The next cycle in the devek-pment of Federal Legislation for mothers and children started with the passage of the Social Security Act and Title V of that Act. The Children's Bureau, which developed Title V, was concerned that many mothers lacked access to prenatal services and that many children had no access to well-baby and well-child care. What resulted was the creation of the State Maternal' and Child Hc-alth

programs. Concern for the unmet needs of children with chronic diseases and disorders:also led to creation of the State Crippled Children's Services programs.. Again, a gap between the health services available and the

health services perceived to be needed was a major factor in overhauling

the Federal effort. The responsibility of both Federal and State Government in the

proviSion -.of health services for mothers and children was vastly expanded with the enactment of TE ;le V. The new legislation established a strong Federal-State system concerned with the health of mothers and children, a

system in which the Federal Government was to have a major responsibility. In part, this was to be achieved through the grant-in-aid policy that had been established by the Sheppard Towner Act. In part, it was to be

achieved through extensive Federal regulations specifying what services

the State programs were to provide, and how State programs were to provide them.- State programs. were required to comply with these

regulations to be eligible for the Brant -in -aid. The regulations put teeth in

the grant-in-aid process and established the Title V agency as a strong Federal presence responsible :or mothers and children, which still continues today. The policies established by the original Title V legislation remained

essentially unchanged until the amendments of 1963 and following, creating the Maternity and Infant Care (MIC) and Children and Youth

(C&Y) projects. This leeisLition allowed the Federal agency to circumvent State government and negotiate directly with other responsible bodies to

create community health units, a departure from previous policy that the Federal Government would work only through State agencies. The change was made because in the judgment of the Congress, the activities of many States were not adequate to meet pressing maternal and child health needs and opportunities. The precedent was thus established that the Federal Government as well as State governments should assume responsibility for working with. ;Local communities and public and private agencies to meet

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3!3
maternal and child health needs. This policy of course was not limited to

Title V health programs; it was common to many of the Great Society

programs. During the 1960's, a number of categorical programs were also created

to provide services for specific diseases or health problems that had been

identified by the revolution in medical knowledge. The American health

care system had become more oriented toward the treatment of acute

diseases, and various organizations and groups who were interested in

particular diseases and disorders lobbied to create free-standing Federal

programs to provide relevant services. These included programs for renal

dialysis, hemophilia, various forms of chronic pulmonary disease, and

genetic diseases. Again, recognized health needs caused major changes in

public health programs. Creation of the various categorical health programs for mothers,

children; and poor families during the 1960's resulted in a number of

vertically organized programs. Some were developed to function within

the traditional Title V Federal-State organization, but more were designed

to function as semi-independent units with varying degrees of organizational attachment to th,: State programs, and a number were designed to

function as free-standing prOgrams unrelated to the Title V Federal and

State organization. SinCe the 1960's, the problem of diffusion of policy and program control

has been heightened by a number of factors. Major additional Federal

policy initiativesincluding the child nutrition programs, the Education

for All Handicapped Children Act, the Title XX legislation, the expansion

of Head Start, and othershav-. taken place outside the health sector,

even though these programs are clearly health-related. State health

departments and others responsible for the coherence of State maternal

and child health efforts have found it difficult to coordinate these new

programs with existing ones. Likewise, as demands on State governments have grown over the past 20 years, many States have reorganized their

human services agencies into umbrella orgarii7ations, subordinating their

departments of health and placing maternal and child health and child

care programs lower than ever before ;-1 the State government structure

CO-Finally, the very real fiscal crisis of many States and localities in the

1970's has made it difficult for States simply to maintain the scope and

quality of many existing services. As inflation and reduced program

budgets have taken their toll, bureaucratic problems have often become

worse rather than new efficiencies being realized. Each State agency or

program unit has found itself competing with others for limited public

service dollars, with increasing pressure from its own constituencies and

often with another set of pressures resulting from accountability equirements of various Federal programs.

&ASIC ASSUMPTIONS

The Panel. believes the current disarray of programs and policies is

sufficient to merit another major step in the Nation's policy toward

344
children and mothers, this time to integrate program policy as well as

oversight and management. The balance of this chapter offers some

suggestions in that direction. In so doing, the Panel wishes to make

explicit some of the assumptions we have come to share in the course of

our .deliberations, all of them relevant to our views about an adequate national policy; most have already been touched on elsewhere in the

report. We do so in recognition of the fact that in any discussion of health

care policy, individuals harbor many different frames of reference and

value assumptions. This is especially true in a country like the United States, where patterns of care diverge so widely for different population

and income groups, and where the appropriate scope of private and public

responsibility is constantly beingrenegotiated. (1) At all levels of policy determination and governance, we believe

that health policy toward children and pregnant women should

be construed broadly to encompass a wide range of health and health-related services, both private and public. including primary health care, nutritional interventions, family planning, mental health care, specialized services for chronically ill and handicapped children and others at special risk, local and

regionalized hospital care, school-based health services and

relevant support services. Because the private sector plays such a

major role in deliver.ng services, establishing standards of care,

and training professionals, it is not enough to equate maternal

and child health policy with public policy alone or with publicly

provided services, or even with publicly financed services. In

addition, we have argued throughout the report that health care

spans a good deal more than traditional medical services, and

that health-related educational and support services must be part

of a comprehensive . national health promotion policy for

children and mothers.

One good illustration of how major policy initiatives are likely

to require close partnership between the private and public

sectors, and to include a wide range of services, is found in

cecent efforts to improve pregnancy outcomes. As a distinguished physician testified to the Panel: [Federal authorities were] able delineate Federal project

grant funds for Neonatal Intensive Care units (NICU). Later

it was mandated the NICU's be supported by maternal and

child health funds in every State. However; it was the private

sector which spent considerable time, effort and money to develop the milestone document "Toward Improving the

Outcome of Pregnancy"; and it was the enthusiastic, unflagging and vigorous efforts by the young neonatalogists in this

country who led their communities, hospitals, health depart- ments, State legislatures, etc. to put into place a regionalized

system, including transport, for the care of newborns requiring secondary and tertiary care. And they, and to a gratifyingly increasing extent, their colleagues in Obstetrics are still exerting leadership to expand and improve regionalized

perinatal care. I am convinced that if the private sector had

345
not done so, this country would not be close to the level of

care now being afforded the high-risk newborn (2). Collaboration between private and public providers also has been characteristic of many other major policy developments, including implementation of the EP'SDT program, the develop- ment of school-based services for adolescents, and community

education in accident prevention. (2) Although many of those most in need are likely to be poor and

poorly educated, a national policy must address the needs of all children and pregnant women. In assessing needs or in planning, for example, it is not sufficient to address only the problems of

low-income families or groups eligible for means-tested pro- grams. To do so not only overlooks the very real health needs of

certain other population groups with special needs (e.g., adoles- cents), it also tends to obscure the fact that many children and women move in and out of poverty status each year (3). (3) The development of lists of needed services, as found in chapter 5, and the description of desired attributes of every primary care unit, as found in chapter 6, make it easier to delineate desirable goals and organizational structures of prima care Rut the

Panel also believes that pluralism of er arrangements is desirable, permitting greater_freedoim for consumers and health

care professior.bals--alike.-This diversity inevitably makes policy

formation more complex. (4) We believe that -only at the levels of government closest to

children and families the Nation's towns, cities, and _counties

can health-care' needs be assessed in detail, and services organized to meet these- needs. Although many decisions

regarding program priorities, policies and budgets necessarily are made at more distant levels of government, these levels should

see it as their role to facilitate and enhance the efforts of local

providers and local government. Because the strength of service

systems. in the United States lies in their pluralism and their appropriateness to diverse local realities, it is essential that

flexibility be preserved in the various instruments of State and Federal assistance. Conversely, over the coming decade more

should be expected of local elected officials and providers in

assessing the needs of resident children and families and taking

the initiative to further develop and coordinate existing services

so that all persons are adequately served. Community participation in the design of local service

structures also leads to grass-roots support of health services.

Communities with no sense of involvemens in local health

programs are not likely to be committed to maintaining and

strengthening them, whereas those with strong commitment often can overcome considerable financial, organize tional, and

political barriers to ensure that basic services are available to all. (5) Stronger orientation to health promotion and preventive care for

children and pregnant women implies a fundamental shift from

passive to active modes of service. Health professionals and

3
institutions must be attuned to reaching out to engage individu- als before health problems become serious. Providers often

operate on the principle that it is enough to treat conscientiously

those who come through the door. Responsible local authorities must compensate for this posture and overcome it where possible by anticipating the needs of defined population groups, and working to mobilize private and public health care providers as a group to meet preventive care needs. Outreach activities are

essential to this more active approach. Emphasis on prevention

also calls for closer collaboration among environmental protection, public health and personal health care professionals, with division of responsiblity among them clearly defined. The

economies that result from unified efforts in screening, accident prevention, and other essential activities are certainly in the

interest of local authorities to encourage, but may require

reordering of politkal, bureaucratic and professional "turf' over a period of years. Similarly, attention to psychosocial and behavioral problems of children and their families requires coordinating the efforts of private and public health care providers, school and social service personnel, and mental health professionals. (6) We have argued that family involvement is ssential in children's

health care, and that such care cannot be delivered effectively without acknowledging the centrality of parents and other significant persons in the child's community. In many forms of health care and especially for chronically ill or handicapped

children, the nature of the child's social environment becomes a major determinant of success or failure. One major challenge

facing local service systems is to design case management so as

to simplify service use for the child and parent, and to build on

strengths and sources of support for the child in the community. In addition, a number of the Panel's recommendations aimed

at assuring that all infants, children, adolescents, and pregnant women get the health services they need, must be implemented with particularly great care to enhance and not undermine

family integrity, privacy, and confidentiality. Our

recommendations to expand home visiting to families with

pregnant women and newborns, and to monitor more closely the

availability and utilization of certain health services, raise

especially important issues in this area. We believe the significant health objectives of both of these recommendations can be

realized without compromising family integrity, privacy, and

confidentiality, but special attention must be paid to ensure that progrm participation is voluntary and that health care personnel do not interfere inappropriately with a family's customs, values,

and lifesty le. (7) The Panel is impressed with the evidence gathered from the

litetature, from testimony of interested groups, and from our site visit:: and consultations that public programs that are successful reaching a high proportion of their target population with

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-t.
primary care tend to have a significant component of parent or

consumer involvement. Such involvement can take many forms, including true partnerships in which program control is shared

between providers and users of services, advisory bodies, and

arrangements where parent or consumer influence is exercised

primarily by employment of community residents in paraprofes- sional roles. Especially where there is a substantial social or

cultural distance between the target population and those who

are providing services, genuine and systematic involvement of

consumers will considerably heighten the chances of successful

operation of the program. (8) Last, we caution that movement toward full attainment of

national objectives will require forceful private -and public

leadership, as well as extensive collaboration among health care

providers, policymakers, parents, and other citizens. Such leadership and collaboration cannot be willed into existence by the

Panel, nor can changes in current patterns of service delivery

and program administration simply be "engineered." No number

of specific recommendations for new standards of care, program

reforms. altered, egulations, or new administrative structures can

substitute for thee resolve of individuals working together to bring

about desired changes. We believe that broad support of basic

maternal and child health objectives themselves, and willingness

to work aggressively toward their attainment are among the most important predictors of success. We also believe that progress

toward these objectives is measurable,--with a variety of process and outcome measures available to those who would prepare a

national report card 10 years hence.

MAJOR OBJECTIVES OF STRUCTURING THE SYSTEM

The chief goal of the restructuring ideas presented in this chapter is to

integrate and conform policies in existing programs to better serve the

needs of children. Each programwhether Federal, State, or localought

to contribute to the objectives set out in this report through program

activities that work well cotlectively. The Panel recognizes that targeted

funds and special programs are in many ,cases essential to meet the needs

of particular populations. Its recommendations thus are not aimed at

reducing or consolidating programs as a goal, but rather at directing the

efforts of existing programs toward mutually reinforcing ends. The Panel

believes the key challenge with regard to the range of existing programs is

to integrate their policies. reporting, and administrative _activities. The

remainder of this chapter is devoted to recommendations toward this end.

GOVERNMENTAL ROLES

In chapter 1, we briefly reviewed various factors that contribute to the

complexity and fragmentation of current policies, programs and local

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3.4 g-
;delivery arrangeMents. Variations are great among States and localities in

the way these factors play themselves out and interact, making it difficult

to comprehend in detail their impact on the quality and efficiency of care. The Panel wishes to be candid in saying that during our 18-month

investigation, we could not. hope to fully understand all of the relevant

administrative, bureaucratic, and intergovernmental implications of these

issues or to comprehend the intricacies of service systems in all 50 States.

In addition, it is obvious that many of the most serious questions about how best to Clarify and improve national policy toward the health of

mothers and children cascade into larger questions ofhow best to organize and administer human services as a whole, how such efforts should link

with policies for other target groups, and so forth. It is beyond the scope of

this reportor any single reportto analyze such questions comprehensively. We nonetheless believe that it is possible to shed some light on many of

the basic problems currently facing State and local providers, professional

groups, and policymakers categorized under three broad rubrics.

State management structures The relationship between State and Federal Governments Local service coordination The sections that follow analyze each of these. A fourth category

strengthening administrative structures at the Federal levelis discussed

in the next chapter.

State Management Structures

The Panel is aware that in many States a mandate to carry out our

proposals is unrealistic unless the scope of 'policy is reconceived and

an appropriate structural unit, budget review process, or both is initiated. Our willingness to advocate a major continuing role for the States is

critically dependent on the willingness of the States to accept the new role

in its full substance. The Panel does not wish to propose a single agency

configuration, believing that effective leadership for maternal and child

health might be designed quite differently in different States. But we do

make the following recommendations, all of which would help to create a

more effective focus for maternal and child health at the State level.

First, every State, through the office of the governor, should review its

options for consolidation of program effort related to maternal and child

health and attempt to place authority over all relevant funding r ?Ms in

an appropriate division based in the Stare health unit. We believe this can

and should be done in States with umbrella agency structures. Options

include joint budgeting, colcication, and shared administrative control as

well as full ,ntegration. Present experience suggests that States where

maternal and child health is- equated with Title V only do not have the critical mass of dollars or program control needed to achieve the

objectives we have outlined. Conversely, some States such as Michigan

and Alabama have set an important precedent by unifying policy control

of Title V, EPSDT, Family Planning. and the WIC program under a single

health department unit. States that do not actually consolidate programs

349

319
or at least policy control should be required to explain, as part of the Title V reporting system. how the Title V agency is coordinating with EPSDT, WIC, and Title X Family Planning. All States should further be required

to include in their Title V reports impact statements regarding coordination with mental health services and services for the handicapped, including those offered under P.L. 94-142 in the schools. Reporting

requirements that conform with each other, created by appropriate Federal authorities, should be an option for States that seek to integrate program management or policy. For the remainder of this chapter, the proposed new State administrative mechanism will be referred to as the

maternal and child health authority. Second, in those States where Title V Crippled Children's funds are

administered in a separate agency, a department of welfare or a university, this unit should be closely linked for purposes of planning, data collection',

and quality assurance with the maternal and child health authority_ A

strong unification of effort should be promoted around all aspects of care

for handicapped children. The Panel hopes that the term "Crippled Children" will be replaced in the 1980's by a term more in keeping with

today's wide range of programs, such as specialized health services for children. The unit or process responsible for making State programs for handicapped children work together should not only oversee expenditure of Title V funds but also provide focus and leadership on health-related policies of all State programs for physically and mentally handicapped

children. And third. the Federal Department of Health and Human Services

(DIMS) should familiarize those States demonstrating only minimal consolidation or coordination of programs with policies and practices that

have simplified bureaucratic structures in other States. These efforts

should involve more than just health personnelthey should also be

targeted to State legislators. health planning agencies, consumer advocates, budget directors, and the governors themselves.

State-Federal Relations

It is a major positive step to establish a clear unit or mechanism of

responsibility at the State level for various programs related to health care

for children and pregnant women. Equally important is a clear under- standing between the States and the Federal Government about the role

of each in the process of policy formation and program implementation. The Panel recognizes the well-established tendency for- one level of

governance to insist that problems of organization must be solved at another. Hence. State authorities urge that Federal programs be reorganized before the States can act, while Federal authorities stress the

flexibility of current legislation and- regulations and blame State and local

program managers for not being more resourceful in joint efforts and in marst.alling various resource streams. This pattern is not conducive to

effective program implementation. A first step in clarifying State-Federal relations is simply to define what

it is that each of these levels of governance should be expected to do in the

350
Program category or subcategory

General maternal

and child health

WIC and MCH

nutrition

Family

planning

Other MCH

Public health

nursing

General

nutrition

Immueization

Venereal

disease

Mental health and

related programs

Dental

health

Crippled

children

57.0

36 3

23.5

27.2

72.0

125.0

28_1

166.4

40

Prevention expenclj tu res. 80

1 1 i

302.2

285.6

120 160 200 240 280 .320

Millions of dollars

Total personal health expend tures and personal health prevention expenditures of State health agencies, according to program

category and selected program subcategories: United States,

FY 78

4101, .) 4 it ,Les 1..
process of policy formation and implementation of public programs. The

Panel belieVes the following division of responsibility is reasonable and

preserves a strong collaborative relationship between State and Federal

Governments.

,Federal responsibilities (including both Congress and the Executive

Branches as appropriate) should be to:

(I) Identify the personal health services that should be available to

all mothers and children; determine the special health services

that should be available to mothers and children who have

special needs; and determine the health promotion and prevention services that should be available on a population basis.

(2) Establish and fund programs, as needed, to simpert 'health

services for . mothers and children; conduct traltional and

innovative health promotion and prevention programs; and,

conduct relevant research and demonstrations, training, technical assistance, resource development, and advocacy on a

national basis.

(3) Establish a comprehensive maternal and child health planning

system that functi.-ms within the national health planning system

(4) and will be used by all relevant Federal programs. The

planning system shculd (a) identify the health services that are

needed by mothers and childeen,--(b) describe the health services

that are to be provided mothers and children by public

programs. and (c) help to improve existing-services and develop

new resources as needed.

(4) Establish a common reporting system for all relevant Federal

programs. The reporting system should (a) require evidence that

needed health services are provided, (b) require evidence that

standards to ensure quality of services have been established and

met, and (c) require evidence of improvement as a result of the

services (improved health status indicators, more services provided at an earlier age or earlier stage of pregnancy, improved levels

of compliance, greater consolidation of services, reduced costs).

(5) Provide technical assistance to the State in developing State

health promotion and prevention programs. (6) Determine if a State has met the performance criteria for

providing needed services. If such is not the case, - Federal

authorities should work directly with others in the State to assure

that needed services are provided.

Leadership in all of these matters should be assigned to a new Maternal

and Child Health Administration, as described in chapter II.

State responsibilities should be to:

( I) Work cooperatively with other State-level planning bodies

(health department, State Health Planning and Development

Agency, State Health Coordinating Council., and American

Academy of Pediatrics and other professional groups) to _identify

the health services needed by mothers and children of the State.

The services must include, but need not be limited to, the

federally determined services. Based on this information, a plan

352 5 2

a

I.
should be developed congruent with the overall State health

plan. (2) Authorize programs and appropriate funds to achieve major health objectives for children and pregnant women, both as a match for Federal support and independently. (3) Support and encourage commtazities and regions to develop maternal and child health service units to provide coordinated

patient services. (4) Develop and support on a regional basis those health service programs that for logistical or cost reasons cannot be developed

locally. (5) Provide certain health promotion and prevention activities on a

statewide basis, and encourage promotion and prnvention

activities in primary car:: at the community level. (6) Interpret Federal standards of care, and also monitoring health

service programs to be sure these standards are met. (7) Use federally determined health planning and reporting meth- ods, with appropriate adaptations to accurately report the health

needs and health services of the State.

(8) Carry out the additional responsibilities of support for research

and demonstrations, resource development, advocacy, and pro- gram coordination so as to permit the attainment of major policy

objectives. (9) Create a conduit for consumer ideas for improvement of services and a grievance system for those who may be denied services to which they are entitled. We offer such guidance mindful of the fact that the major dilemma of State-Federal relations at present is how to achieve appropriate State

autonomy in the organization and control of relevant programs while at the same time ensuring equity of service access and quality across the various States and accountability for Federal program funds. With the exception of certain grant programs such as the Community Health Centers and Head Start, most Federal maternal and child health funding

continues to allow substantial State initiative and discretionary authority

to determine program scope and intent. As we have indicated in previous sections, we support this pattern and believe that the proper national policy for the coming decade is one that makes full use of the capacity of

the States in maternal and child health.

If future policies increase the discretionary authority of the States over expenditure of Federal dollars, however, two issues arise that cannot be dismissed lightly. First, it is clear that without sustained or significant

increase in Federal control over program performance and targeting of

resources, major inadequacies and inequities are likely to persist in some States. It is very difficult to establish criteria or procedures which would

allow some States but not others autonomy in the direction of Federal programs. Hence, the- Panel is reluctant to suggest that State control over Federal categorical programs be increased, except in selected realms such

as planning. In particular, we specifically reaffirm the need for the Federal Government to retain the ability to make direct grants to communities to

353
meet important health needs that a State cannoror will not address. This

view is consistent with the recent recommendation of the General

Accounting Office that State maternal and child ,health agencies not

control Federal categorical programs but be given the opportunity (1) to

review and comment on applications or plans required prior to funding

award and (2) to participate, to the extent practical, in monitoring and

evaluation activities (5). The second issue is that growing demands for clear accountability for

the expenditure of Federal funds may conflict with the need for greater

flexibility at the State level. The determination of Congress and the

Federal agencies to monitor and control program funds more closely is

predictable in an era of fiscal restraint. Symptomatic of this trend is an

increasing Congressional tendency to subject all programs to the annual

appropriation process, to "sunset" programs at defined intervals, and to

seek the right to review all regulations promulgated by executive branch

agencies in carrying out legislative intent. Likewise, DHHS and other

Federal agencies have increased accountability procedures, audits to

detect fraud and abuse, and independent program evaluations in measure

the fulfillment of programmatic _objectives. Increase in Federal distrust

and consequent attempts at control come at a time when the States

themselves are having difficulty maintaining program effort because of

inflation. Hence the States perceive that they are being given less, told to

do more, and forced to tie, up valuable time and resources in documenting

their efforts for Federal authorities.

However it is also true that reporting on Title V, Medicaid/EPSDT and

other programs has been lax in the past decade, resulting in an

embarrassing lack of good information on the compliance of these

programs with Federal legislative intent. Also, insufficient evaluative data

currently exist on the performance of various programs at the State level.

Such information is a minimal requisite basis for future policy determination, and must be available to the Congress, tht eral agencies, and the

public. The Panel acknowledges that it is difficu".. increase both State

autonomy and Federal accountability simultaneously. Several steps can

be taken, however, that will serve both purposes. State administrative

consolidations as noted above, and parallel Federal efforts as described in

the next chapter, are .4.1i.lable steps. Others include:

Federal accountability mechanisms which stress the Federal role

in establishing broad performance objectives and standards, and

the State role in demonstrating progress toward attainment of

these. The States should be granted wider latitude in devising

means to attain the objectives. Joint or concurrent applications and reporting forms for all

Federal programs related to the health of children and pregnant women and joint or ncurrent program applications where

appropriate. Precedent for this,.approach has been established by

DHHS, within existing legislative authority, in a joint application

process for various Federal primary care programs targeted to

low-inCome families .(5). Means should be sought, and where

necessary legislation should be modified, to initiate demonstra354

354
tions in selected States of the consolidation of related funding

streams to meet the needs of specified target populations (e.g.. handicapped children). Such demonstrations would be initiated in

response to State maternal .and child health authority proposals ari a only authorized under reasonable and precise agreements for monitoring, outcome measurement, periodic reporting to Federal authorities, and contingency plans where program goals have not been met.

A new set of coordination criteria to be met by all new or continuing legislation relevant to the health of children and

pregnant women, requiring an introductory statement in the

legislation itself of how the program or policy fits into the existing

array of programs, how it is consistent with national goals, and

how it does or does not conflict with other legislation; regulations and guidelines for each program also should show the steps taken

to provide increased program coordination. Interagency agreements to identify areas of responsibility. define

specific steps to be taken, and assign realistic time frames for the

realization of goals. Such agreements between HCFA and Title V, between Hcad Start and HCFA. between Head Start and Title V.

and between Title V and the Office of Special Education and Rehabilitation Services have shown promise of mutually increasing program effectiveness. The Joint Funding Simplification Act of 1974 would alleviate many

accounting,. reporting, and auditing problems, but this statute is permis- sive rather than mandatory. As a result, practically nothing has been

accomplished under it. Either broader legislation that focuses on the

essential requirements of coordinating services to individuals, such as eligibility simplification, or a specific mandate to provide coordination for maternal and child services is needed.

The Role of Title V

Before turning to issues in local sei;rice coodination, the Panel wishes to

- comment in more detail on.the Tide V program that is at the heart of so many of the State-Federal governance issues taken up in this section. Although we have argued that a broad range of private and public efforts will be required to meet the national-objectives we propose, it is evident

that much of the initiative for advancing public health care programs for mothers and children has resided historically with the Title V program. Title V continues to be an essential "core" element in the national

program portfolio, with great potential both as a vehicle for providing needed services and for increasing the coordination of all State and Federal programs relevant to the health of children and pregnant women. Because the national objectives we outline do not amount to a radical departure from the original Tide V objectivesbut rather bring the original objectives up to datewe do not see the need to recommend any major new Federal legislation to unify national policy. Instead, we adopt an incrementalist frame of reference and recommend that Title V be

revA.sed, according to the specifications detailed in volume II of this report,

355
in order to provide the leadership and pivotal policy focus required to

move ahead.

One of the Panel's chiefrecommendations is that Congress substantially

increase the appropriation for Title V and that States provide the required

matching funds. Increased funding is essential because the revamped Title

V program proposed here involves major new management functions and

new service objective's for the program. Funds will :be necessary to elicit

additional State support, strengthen State staff, promote better program

coordination, and extend services to those most in need when no other

funding sources are available. In particular. we believe that modest

increased investment via Title V can result in significant multiplier effects,

and long-term economies in the implementation of all public policies and

programs surrounding pregnancy and the early years of life (family

planning. EPSDT. WIC. regional perinatal care, and others) and the care

of physically and mentally handicapped children (Medicaid. SSI, Developmental Disabilities, 94-142. child mental health programs, and

others). These are two of the lai gest areas of present national policy

commitment, and two of the areas where well-coordinated policies can

make a demonstrable difference. The success of Title V modifications will

depend in significant measure on the full implementation ofthe previously

stated recommendations regarding performance criteria and improved

accountability.

Local Service Coordi'lkation

3

Improved coordination is often proposed as a quick and simple way to

maximize and redistribute existing resources. However, the truth is that

the word and the concept -coordination" have in the past carried very

little substance. With at least three levels of government, as well as a

multitude of private community organizations, coordination is extremely

difficult and becomes less formal and bureaucratic as one approaches the

community level. It is here that cooperation amorg jurisdictions and

among professionals involved, as well as community involvement and

pressure. are translated into meaningful action. Making the health system

work for all children and pregnant women is a difficult enough task.

When, as is essential, it must be linked with other equally complex service

systems in the fields of social services, education, corrections, and

rehabilitation, the difficulties are enormous. This is not to say coordination of resources and service delivery responsive to the individual needs of

children and mothers is impossible: 'only that it is hard to do, requires

structures and systems covering array of resources and services,

and must be backed by the power to assure that comprehensive plans are

carried out as intended.. Although there are no magic formulas for improving coordination,

administrative considerations in the improvement of health services have

received _much attention among public officials in the past several years,

and certain approaches have been demonstrably successful in more than

356 1 G
one community. steps that have alleviated the coordination problem

include the following: Colocation of services e.g., an adolescent health clinic within a high school Single point of administrationcontrol of public health clinic budget, school health budget, and WIC program in a single office Staff consolidationpediatric staff -at a local teaching hospital also rotate through community prima:y care clinics

__ Al-Common rules and proceduresjoint eligibility tretermination for

AFDC an*WIC services

. Single point of service accessa comprehensive he !th center, where initial application serves for entry into health, mental health, dental, nutritional, and social services

.7:ommon outreach and access serviceshome health visitors

Compatible information bases compatible forms for EPSDT and

school health screening Various techniques of case management and advocacya "lead" agency coordinating care for all children with a particular . handicappvig condition -(6) These approaches, and variations on them, offer an extensive repertoire of ways to improve tt coordination of services at the local leveL

Obviously, local al.tempts to standardize or simplify regulations and procedures across program lines often are constrained by Federal and State requirements. Special problems in the use of Federal and State program funds are created by conflicting eligiblity criteria, inconsistent definitions of con- and assets, conflicting rules regarding "first dollar

in," incompat-Ae procedures for assuring confidentiality, differing diag- nostic categories, and incongruent service districts. Even communities that have made major strides toward better coordination have been forced at

times to choose partial solutions pending resolution of such inconsisten- cies at the State and Federal levels (7). Some even have turned down Federal or State funding because rules governing the use of funds seemed

to bring more problems than the money itself would solve (8). Although establishing a single point of service administration has been

among the more difficult reforms to achieve, several cities with sizable

low-incorne populationsDenver, Colorado, and Cambridge, Massachu- setts, for examplehave managed to completely restructure and consolid2 7e public primary care so that a single system of peripheral neighbor- hood clinics now offers excellent unified care, with the clinics fully linked

to a municipal hospital (9, /0). The systems evolved somewhat differently, reflecting', a complex interaction of local political, administ-ative, and

leadership factors. But they have in common a substantially integrated

control of all Federal, State, and local child health budgets under one

agency or administration. Places where such systems have worked have benefited from timely creation of new health and hospital agenCies, good

relations between the health agency and local elected officials, public health department leadership, a cooperative and complementary private practice sector, and major involvement of hospital-based physicians and

administrators. The availability of funds for comprehensive health centers

357
and other Federal programs also has been a large factor in service

coordination (11). These are models which, though difficult to replicate

exactly, would lend themselves to imitation by many other municipal

governments. Their proven cost 'effectiveness should offer some incentive

for local policymakers throughout the Nation to follow suit.

Less ambitious, though also deserving of national attention, are various

models of ease management and case advocacy Case management is

based on the assumption that in many areas it is more efficient or feasible

to help patients establish appropriate patterns of use and take advantage

of existing servi,:es than to restructure agency effort. Case advocacy has

proven very successful in helping parents of some Head Start children. A

recent GAO report documents the cost effectiveness of the Child and

Family Resource Center Program, which offers comprehensive familyoriented consultation in addition :aditional Head Start services (12).

Case management also has worked in many communities where a lead

agency has been assigned responsibility for care of children with specific

handicapping conditions_ The need for improved systems of case management has grown with the

advent of P.L. 94-142 in the schools and other programs which mandate

that a responsible agency deter mine the child's needs and then evolve and

carry out an individualized plan for meeting them. The plan frequently

requires the involvement of multiple service providers. Rather than rely on

the family to locate and coordinate the necessary services, an individual in

the responsible agency should make the contacts, explain the problems

and the services needed, and assist the family in obtaining the services.

Too often, however, the plan is only a piece of paper listing needed

services and the family must depend on its own resources to find and

coordinate them_ Also, children sometimes are subject to several such

individual plans at once, with conflicts and confusion: arising as a

consequence (see chapter 8). As long as active and well-coordinated case management accompanies

individual care plans. the Pang believes the plans are a very good

instrument for service coordination_ In general. case management is a

relatively inexpensive service which can maximize the impact of more

expensive services. As such it should be an allowable cost, of appropriate

agencies and programs. In general, the Panel believes that aggressive coordination of public

programs, and of private and pt-blic efforts, remains essential for every

community_ Although we believe the States should monitor public

programs to be sure that needed services are delivered and standards

upheld, wt. also recognize that only at the local and county level can the

needs of children and their families actually be met_ Moreover, local

initiative and community action cannot be induced by Federal and State

authorities=they must result from the work of many interested and able

people working toward common goals.

Parallel to our recommendations regarding Federal and cc--sponsibilities, we therefore believe minimal community responsibi:;i:.- f.hould be

to:

(I) Assign a lead agency or publicly appointed body to assess

Whether the existing network of private and public health care

358
arrangements is sufficient to meet the primary care needs of all children and pregna women; whether children with special needs are being identifi d and treated adequately; and, whether prevention and promotion activities are widely available in the

schools and in neighborhoods as well as in health care arrangements. - (2) Charge this same agency or publicly appointed body wit's publicizing these findings; participating in regional and State planning efforts according to common Fede -al-State planning

requirements; and exercising leadership in co: unity actions to

improve existing services. (3) Contribute local tax dollars, both as a match for State and Federal monies and independently, to ac!_:-tve major health

objectives for children and pregnant women. (4) Take necessary steps to increase coordination among providers of health and health-related services, along the lines discussed

above. For lead agencies to carry out these roles effectively, they will need

adequate staff resources.

HARNESSING BROADER POLICY MECHANISMS

In addition to consolidation of management and program coordination, six broad policy functions should be better harnessed at the local, State, and Federal levels in the future as mechanisms for attaining the major health objectives for mothers and children, and fo"r assuring that the various Federal and State programs relevant to health care for mothers and childrenincluding handicapped childrenare implemented in a mutually reinforcing and efficiently targeted fashion. These functions

include planning, quality assurance, development of information systems, demonstrations, technical assistance-consultation, and advocacy.

Planning

The most rational method for deciding how to deliver essential services

is to plan. Service planning is a cycle that begins with statement of objectives, continues through needs assessment' and an inventory of

resources, establishes priorities among needs, considers and chooses

among service delivery options, and follows through after program

implementation with evaluation to generate information for a next phase

of policy development_ Two major problems exist in maternal and child health planning. First, the complete planning cycle is rarely carried out at any level of gc vernment or integrated properly with budget and policy det-rmination. Second, multiple programs and pa cies have generated separate planning

requirements. usually for different purposes or aspects of decision:naking

and frequently not focusing adequately on the needs of children and

pregnant women. The result is considerable confusion about the entire -

359

359
planning process and its usefulness for moving toward attainment of

national objectives. The Panel believes several steps can be taken at the State and Federal

levels to help. First, State agencies administering Title V funds and

related program dollars should contribute more significantly to the

planning process for all programs offering health and health-related

services to children and pregnant women_ This should be done both by

establishing clear and simple planning requirements for the Title V

program itself and by giving the relevant State unit an enlarged role in

broader State health plannine efforts. Although the Title V statute makes the approval of a State plan for

maternal and child health services and services for crippled children a

condition for receiving funds, most State plans consist only i program

descriptions with notes about what could be accomplished with additional ,

funding. plus a compendium of reference documents required by Federal regulation. The State Title V plan in most cases does not reflect

population-based needs assessment, plans for implementing change, coordination of effort with other programs and agencies, or a process

which allows for significant involvement of providers-or consumerssince

none is currently required by Federal regulation. The inadequacy of State planning for children and pregnant women

also results from the equation of maternal and child health services with

the Title V program and the consequent failure to integrate the services

delivered or funded by other agencies, or provided through the private

sector, into a comprehensive plan. An adequate plan also must contain an

analysis of State resources and strategies for coordination of effort with

other agencies controlling relevant Federal program funds such as

Medicaid, Ccommunity Health Centers, and Title XX. As one mechanism

for strengthening State planning, the Panel recommends revision of Title

V planning requirements to mandate a much broader State planning

process that recurrently evaluates the health needs of women and children

in the State- (particularly those of low income or minority status and with

special needs), describes the full range of health and health-related

services they are receiving, and assesses selected health outcomes. The

planning requirement should also be designed with the understanding that

Title V monies are to be used in combination with many other sources of

Federal, State. and local revenue. Another planning problem can be traced to relatively new Federal

legislation. The National Health Planning and Development Act (P.L.

93-641) gave State Health Planning and Developmental Agencies

(SHPDA's) and area Health Systems Agencies (HSA's) responsibility for

planning designed to improve the 11,.-aiffi of persons within States and

geographic subdivisions of States. Tr;: via.nning mandate, intended to

ensure access to needed health services and to restrain the rising costs of

care, was superimposed upon an already compiex process in most States

by which the governor, the legislature, and regional Federal authorities

determined health care priorities. While the long-term effect of the new

legislation may be to enhance development of maternal and child health

services. its short-term consequence has been to generate confusion about

which planning process should be taken seriously. Title V agencies have

360

3 T; (
not usually been involved in the new State and local health planning

processes and have found themselves planning only for the limited Title V

programs under their direct control., while the new planning entities have

tended to focus on institutional care, care for the elderly, and other hfghcost sectors because of concern for cost containment Both trends have

resulted in most parts of the country in low visibility for and insufficient

attention to comprehensive care needs of mothers and children, despite

the increase in Federal and State program for these groups and the

importance of rational effort on their behalf. The Panel believes that effective planning in maternal and child health

for the corning decade will depend on strengthening and better coordinating the various mandated planning processes. Speetically, we recommend

that: The State maternal and child health authority responsible for

public health services to children and pregnant women should

share with the HSA's, SHPDA's, and State Health Coordinating Councils (SHCC's), the overall responsibility for maternal and

child health planning. Collaboration between this authority and

the federally mandated planning groups should produce a

document with the following characteristics: It should (a) identify and order the unmet health needs of mothers and children; (b) identify available resources and the

ability of these resources to meet unmet needs; (c) set specific and measurable goals for improving services and health

outcomes; (d) specify steps to be undertaken in attaining these goals; and (e) specify steps to coordinate efforts among local

providers in attaining these goals_ It should assess the extent to which relevant federally

supported programs, such as maternal and child health clinics,

WIC providers, EPSDT providers, family planning clinics, and

programs for handicapped children, are meeting national objectives in their areas, and are working jointly toward these

objectives. It should be designed so as to be used wholly or in part for

four purposes: multiyear planning within the agency unit

itself; the maternal and child health component of the State

Health Plan; the State maternal and child health plan required

in order to receive Title V funds; and as a basis for Health

Planning Agency "appropriateness reviews" regarding use of

Federal funds.

Although the specifics of the planning process undoubtedly will vary from State to State, each State as a minimum will need to

assemble data on a small area basis--such as health systems' areas or countiesabout the health status of mothers and

children. the public and private resources available to provide

the necessary services described in this report, and the patterns

of utilization of existing services. (2) The HSA's, SHPDA's, and the National Health Planning Council need direction and guidance to become more effective in

planning and allocating resources for the promotion of health

361
among children and pregnant women. Specific steps should

Specification by the Secretary of Health and Human Services of maternal and child health as a national health priority. The National Guidelines for Health Planning contain a few

relevant goals for children's health promotion, for example, imm1ini7ations for children under 15. More specific children's health promotion goals are needed to provide guidance to the HSA's and SHPDA's. These should p:acP emphasis on

assuring access to three basic essential servicesprenatal. delivery. and postnatal care; comprehensive care for children

through age 5; and family planning services. Requirement that HSA's coordinate closely with State mater- nal and child health authorities in regard to the HSA functions of (a) review and comment on requests for Federal funding of maternal and child health services; (b) approval of Proposed Use of Federal Funds (PUFF) in relevant programs; and (c) appropriateness reviews HSA boards should have adequate

representation of persons with expertise in maternal and child health, and State maternal and child health authorities should

assign personnel to participate in HSA meetings at which

relevant matters are to be considered.

(3) The Federal maternal and child health agency, described in the next chapter of this report, should work with the National Council on Health Planning and the Bureau of Health Planning

in the developrcenr of the materials necessary for effective

relationships between State maternal and child health authorities and State planning agencies. These would include: Instructions to HSA's, SHPDA's, and SHCC's concerning the maternal and child health section of the State Health Plan.

Information to help HSA's understand the implications for women and children of decisions made on Certifica tes of

Need, Proposed Use of Federal Funds, and Appropriateness Reviews.

Manuals to explain the scope of maternal and child health

services and the responsibilities of State maternal and child

health authorities to SHPDA and HSA boards and staffs, and

also the terminology and techniques used by the health

planning agencies to the State maternal and child health

authorities. The National Institute of Mental Health already has prepared such a manual for community mental health

centers and HSA personnel. These steps. if taken jointly, would reduce existing confusion and reverse

the present trend for maternal and child health planning to "fall through

the cracks" of the State planning process. The Panel believes such

planning is an important HSA function, and significantly more in keeping with the original purpose of the health systems planning legislation than

the more narrow issue of cost containment that has consumed so much

energy recently.

362

3 X' 0.%).
Quality Assurance

Assuring the ready availability of essential services will be of limited

value unless the quality of those services is high enough to have a major

impact on the health of mothers and children_ The Panel therefore believes the process of quality assurance, including establishment of standards and monitoring of performance, must also be employed in

pursuing national objectives. The Title V legislation and regulations require States to assume

responsibility for various quality assurance functions, and to develop and upgrade standards relating to services. State Tide V agencies are perhaps best known for gtality assurance resardina crippled children's services. Since its inception the Crippled Children'sService3 program has assured

its beneficiaries appropriate services of high quality_ This has been

accomplished by establishing standards that go beyond professional

licensure or institutional accreditation for payment of specified services. Crippled Children's programs often require providers to have specialty

board certification for payment, or specify that certain procedures can be performed only in institutions which meet standards relevant to that procedure. Wben the Maternal and Infant Care and Children and Youth

projects were initiated, they were made subject to similar high standards of staffing and procedure. Consequently, when studies compared the quality of care in these facilities to that of clinics in teaching hospitals, private providers, and others, the Title V-funded projects scored very high

(13). The Panel recommends that Federal and State maternal and child

health authorities continue and expand their activities in the realm of quality assurance. It should be the responsibility of the Federal maternal and child health authority to establish minimum national standards for personnel, facilities, and delivery of care. The process for standard-setting

should be broadly representative, including input from physicians, other health professionals, consumer representatives, and others. It should

continue to be -...ndertaken in collaboration with the relevant professional and institutional groups, such as the American Academy of -Pediatrics, American College of Obstetricians and Gynecologists, American Medical Association, American Public Health Association, American Nurses' Association, and the Joint Commission on the Accreditation of Hospitals. In additioit, exceptions to federally established standards should be

allowed when the State maternal and child health authority or the facility

being reviewed can provide adequate justification, such as the inability to obtain -)nnel with certain credentials in isolated areas or the

irrelevance of Ir...? stipulated criteria to specific circumstances_ The Federal agency should also establish minimum expectations for the monitoring of performance: how often records should be reviewed, who should conduct the audit, how large a sample is required, wben procedures other than

record reviews are essential, and so forth. Just as the Panel believes that State maternal and child health

authorities should ensure the availability of services by working collaboratively with service providers not funded by Title V, it also believes that

363

3 3 .
these authorities should monitor the quality of services provided to

mothers and children by public age ac;.:s other than :Lase supported by Title V, requiring that they conform to the same standards as those

expected of Title V facilities and monitoring compliance with those

standards. Waivers might be sought by some facilities, such as migrant

health centers in isolated areas. but such waivers might also be required by

Title V-funded local health department clinics in simiarly isolated

circumstances, so no dual standard of care based on source of funding

should be maintained.

The main objective of the State maternal and child health authority

should not be to detect deficiencies, but rather to prevent them and

continually upgrade services.. The Panel believes the right to monitor

program quality carries with it the obligation to involve the monitored

program in the promulgation of standards and to work with the program

in training personnel, making all modifications necessary to conform with

standards, and consulting frequently on program development. The

enforcement of quality assurance in programs not funded by Title V will

require collaborative agreements at the local, St:..te and Federal levels

between maternal and child health authorities and the agencies funding

other programs. Just as in the case of planning, quality assurance presents some difficult

issues of coordination at the State level. In particular, there is the potential

for confusion between the maternal and child health quality assurance

process and the activities of the Professional Standards Review Organizations (PSRO's). the HSA's, and the State Medicaid agency. The Panel

believes that the intersection of various quality control activities needs to

be studied State-by-State, with more thought given by both State and

Federal authorities to mutually reinforcing policies.

Information Systems

In the age of the computer, it is possible to generate enormous

quantities of data on target populations and services. A more elusive goal,

however. is to collect only that information which will actually be used

cost effectively in policy determination and review and program improvement. The Panel does not advocate wholesale increase in data collection

or analysis. Instead we recommend that each State develop a carefully

reasoned strategy for collecting and using three types of information:

policy-related epidemiological data on health status and health care

access, management systems data on receipt of services and use of funds,

and evaluation data on program effectiveness based on stated objectives

and specific goals. Each of these types of information can be analyzed and

presented in a number of ways to meet different policy needs including

accountability to Federal agencies, State planning, and internal agency

administration. Policy-related epidemiological data is population-based information on

health care needs and access to health services. Sudh data can be very

selective, focusing on high-risk problems or populations in the interest of

developing better targeting strategies. The data can be collected intermit364
tently or can be part of an ongoing surveillance strategy aimed at assessing progress toward high-priority health service goals. One good example of

targeted data collection is the Georgia system of perinatal surveillance (14, 15), which includes a sampling of birth and death certificates to establish

the neonatal mortality rate for serected areas and 'according to various maternal characteristics. These data are analyzed to devise service

targeting strategies, and are also disseminated to relevant service providers and administrators. Similar systems have worked for immunizations, and

can be envisioned for childhood accidents and other major problems. Surveillance information also can be used as one form of outcome

measurement to determine population changes on important health status

indicators. Although such changes may or may not be attributable to the health service system, Federal and State authori,es should weigh this type of outcome data along with data on receipt of services as one important measure of progress toward the achievement of performance objectives. In general. targeting of services based on problem-oriented surveys is easier and less expensive than attempting to create and maintain risk

registries, or otherwise identify and track individual children and mothers over time. The Crippled Children's Services program attempted,. particularly in its early years, to set up registries, but the listings were rarely

used and proved ineffective in-making sure that needy children received

treatment. Two exceptions can be 'found, however, to the generally discouraging record of risk registries. One is the recent experience in this country with child abuse fegistries, which have been part of a broad new

child abuse reporting system. The other is the promising development of systems for identifying and tracking high-risk pregnancies during the

interval. from the earliest prenatal visits to the return of the mother and

infant to the home after delivery. A number of perinatal care networks have experienced notable success in developing such systems. In most States, even those with relatively sophisticated human services accounting, policy-relevant rnanz gement information on the delivery of maternal and child health services t~ minimal This absence of information

in many States can be traced in part to the 1976 decision to disband the Federal Maternal and Child Health and Crippled Children's reporting

systems. Reduction in Federal expectations has led to laxity in some States, even though State authorities usually recognize that it is in their

interest to have good information on needs and program performance. Another reason for the inadequacy of State data systems is simple lack of

trcney for planning, either as part of the Title V process or for other State

efforts_ Reporting systems have been a cause of major concern in Congress, but for me most part the concern has been about fiscal accountability, not service accountability. Information systems such as the Medicaid Man- agement Information System are designed to remedy problems such as

fraud and abuse. that is, overutilization, not underutilization. Since 1969, the EPSDT program of Medicaid 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 and categorical criteria of the welfare-based Medicaid

program. The fact that welfare and social service departments have case

365

r.)
files on all families eligible for Aid to Families with Dependent Children

should make identification easy. However, many States have had severe

problems in setting up computer systems that could identify eligible

children and report on those who needed care. Those States which have

been most successful are those which from the outset had strong

computerized data bases and a capacity in both health and welfare

departments to function effectively (16). Problems can be compounded when various programs develop parallel

and incompatible data bases to meet Federal accountability criteria. In

general, the most useful human services information systems have been

those which established common . language and categories across programs, enabling integration of data bases at the stage of analysis_

As well as designing better information sy-tern. relevant to management, monitoring, and accountability, the Panel believes that States

should further develop their own capability for program evaluation: This

function should be undertaken within the maternal and child health

authority and, as in the case of severs. large States, may also be

undertaken by staff attached to the State legislature,' the State management and budget agency, or State auditing staff_ California, New York,

and several other States now have such capabilities. The reports produced

are in many cases as sophisticated as Federal reports of the Congressional

Budget Office, Office of Management and Budget, or General Accounting

Office. Evaluation efforts should focus on how well and how efficiently

national objectives are being attained, and cn the congruence among

various Federal, State, and local programs in working toward common

ends.

Demonstration Prowams

The Panel believes that Federal and State demonstration programs should continue to support models of exemplary practice in service

delivery.--It is apparent, however, that inflation and the increased cost of

providing health services has meant that an ever-larger component of

State funding has been required to maintain levels of effort in existing

demonstration projects, and that almost no State presently has sufficient

funds to contemplate new demonstrations. This would not pose a dilemma if current programs had proven

unsuccessful and deserved to be disbanded_ However, in the case of the

MIC, C&Y, and other demonstrations under Title V authority, as well as

various demonstrations under Medicaid, WIC, community health centers,

and other Federal and State programs, notable success has been achieved

and highly cost-effective services provided_ We believe it makes sense to maintain and further spread these

successes before creating new service delivery demonstrations. We also

believe, however, that new funds are necessary to support demonstrations

of (I) more efficient service structures at the local level; (2) new modes of

coordinatior 1..---;tWeen various Federal and State programs and funding

streams with related objectives; and (3) the prevision of certain services

which would in themselves perform 3 coordinating function (e.g., home

366
visiting). The previous generation of demonstrations has shown that comprehensive services can be provided in cost-effective ways. What has not yet been adequately shown is how to unify the implementation on a

large scalebeyond an individual service structureof various closely

related policies and programs. Support for this kind of innovation is not

likely to come from existing program funds alone.

Technical Assistance and Consultation

Another important aspect of knowledge transfer, along with demonstrations, is technical assistance and consultationthe process of familiarizing

providers, professional groups, and other communities of interest with the best ways to achieve desired ends. In a world of rapidly changing health

care knowledge and practice, providers need information and support of many kinds. Similarly, in the busy day-to-day world of public policy, no Federal or State agency performs well which does not explain its purposes clearly, engage in open and frequent exchange with various client groups of providers and consumers, and offer them timely and informed

assistance in working toward shared objectives. Strong patterns of

technical assistance and consultation require excellent agency staff, and

enough staff to communicate fully and carefully. While neither Federal nor State agencies presently have enough staff to trform these function's

adequately, it is the Panel's impression that the States have the biggest problem. The Panel believes t .-zat Federal policy should try- to build an intelligent and energetic cadre of professionals within each State who would work for

the relevant State health unit to communicate program goals and translate national -objectives into realities of local practice. Some of these profes- sionals should be full-time public servants, but some also should be drawn

from, universities and other settings on a contract basis, in order to broaden the range- of qualified and interested personnel who can

-participate.

Advocacy

Advocacy can be of at least two kinds, that which comes from within. public programs and units of service administration, and that which

comes from private groups and individuals. Both are important to

advance the scope and quality of services far children and pregnant women (17). For reasons described in the brief historical section earlier in

this chapter, public agency ddvocacy has become more diffuse and less prominent in recent years. The Paner hopes that with the integration of program policy and oversight at the Federal, State, and local levels, and

the various other reforms we have proposed, agency advocacy will be

re::kindled. No maternal and child health unit can influence the allocation

of scarce public service resourcessome of them not under its direct controlwithout strong ties to various communities of interest and the

ability to make persuasive arguments for the priority of its goals.

367 3 7
in reviewing recent achievements of certain outstanding Federal. State,

and local agencies, it is difficult to escape the conclusion that many of the

most impressive steps have been the result-- -of-forceful -4eadership- by

particular individuals, who somehow have been recruited to the cause of

maternal and child health and have made it their mission over a number

of years to ensure that agencies and programs thrive. If there were a

surefire formula to motivate others like them, the Panel certainly would

recorrurznd it. In the absence of such a formula, we believe that adequate

financial and professional incentives need to be created, from both private

and public sources, to attract highly qualified and motivated individuals

to relevant public sex-vice roles.

In addition, we believe that Federal and Stare policy advocacy can be

significantly improved by the creation of interagency maternal and child

health advisory councils, to lend visiblity and unified purpose to the

efforts of all relevant agencies. A Federal council of this sort is proposed

in the chapter which follows. State councils should be appointed by the

governors, or appointment power should be delegated by the governors to

health department directors. The councils should include representatives

of the relevant agencies and pcofessional groups. and consumers knowledgeable about maternal and child health, with appropriate racial and

ethnic balance. The councils should fulfill such duties as approving the

maternal and child health component of the State Health Plan. and other

plans as required: overseeing State quality assurance efforts: providing

advocacy with the governor: legislature, and other policy makers for more

effective programs and policies: and initiating periodic reviews of

particular aspects of State programming and policy.

These functions should serve to reinforce and extend various agency

activities. The council should serve primarily as a coalition to support and

assist the State maternal and child health program director and other

agency personnel in ongoing pri^;,-,..am and policy formation, not as a

vehicle for political control of these personnel. Even with the most sophisticated and committed child advocates

working inside Government, the Panel believes advocacy by organizations

and individuals independent of Government is indispensable in achieving

its goals for mothers.and chiidren. The neglect of children's interests by the present system has taken

several forms which advocacy efforts must be designed to redress and to

prevent in the future. First are decisions made by legislatures and

governmental bodies which are unresponsive to children's needs not by

intent but out of ignorance. The Panel is aware of many instances in

which well-meaning public officials set policy without understanding its

particular implicatien-; for the health of children and expectant mothers.

Thus, for example. when HCFA wrote policy in ;978 to implement the

new Rural Health Clinic Services Act of Medicaid, it issued a regulation

requiring fiat in order for a clinic to qualify for Federal reimbursement under the program it must serve people of all ages. An unintended

consequence was -l. at maternal and child health clinics could not qualify

for Federal assist. nce even if they were located in rural areas and

provided services to some of the neediest people the program intended to

368 3. it...6
help. It was only through the work of outside advocates that the problem

was identified and that HCFA was convinced to modify the policy. A-second form of neglect which the Panel believes outside advocacy can hilp address is the low priority frequently given children's needs in

negotiations at all levels of government over budgets, staffing, and other

important programmatic decisions. Because many of the services children need are neither particularly expensive nor dran iatic and because a vocal outside constituency has frequently been children's needs have

too often taken a back seat in these crucial deli dons. In many States, children's programs are particularly poorly funded and are among the most vulnerable when budget or staffing cuts are made. In others, children go without services which existing programs entitle them to because the

--prograt-being-adniinistered-as-effectively-as-theyMight--b-e: A third brpad area where outside advocacy can play a vital role is in

harnessing resources in the private sector on behalf of children's needs. Provisions made by industry regarding maternity and paternity leave or

leave for parents with sick children can affect children's lives profoundly, as can the willingness of private providers to offer the range of services children need, of labor and iranagement to purchase adequate coverage

for their employees and dependents, and private fund- raising efforts like

the United Way to accord priority to maternal and child health needs. As with advocacy aimed at the public sector, outside advocacy aimed at-these private sector activities is necessary to assure that appropriate resources and talents are focused on the health of children and expectant mothers. The need for outside child advocacy is particularly acute at times like

the present when there is public skepticism agOut the ability of Government to have a positive impact on people's_ lives and pronounced

pressure to reduce Government's authority and funds. The Panel believes that child health advocates are indispensable allies

to government officials, to parents, and to others concereed with

harnessing both public and private resources on behalf of improved maternal and child health. We therefore recommend substantially

increased levels of support for advocacy from a range of sources in the private sector, including private and corporate foundations, corporate

contributions, contributions from individuals, and private fund-raisin

campaignsREFERENCES AND NOTES

(I) Maternal and Child Health Program. School of Public Health. University of California at Berkeley. and Office of Mattrnal Child Health Service. U.S. Department of Health. Education. and

Welfare. Critical Issues in the Care of Mothers and Children. Challenges to Tide V. Proceedings or---

the Tri-Regional Workshop (Regions S. 9. and 10). Scottsdale, Ariz,. May 14-16.1980.

(2) Batson. b. E. Personal communication. October 10.1980. (3) Wilensky, G. R., D. C. Walden, and A. Kasper. The Changing Medicaid Population. 1980.

Unpublished

(4). As eatablia! ider the Nations' Health Planning and Resources Development Act (P.L. 93-641).

(5) Comptroller General of the United States. US. General Accounting Offace. Report to the Congress. Better Management and More Resources Needed to Strengthen Federal Efforts to Improve

369
PregnaalCy OVICOrfle. Washington. D.C.: U.S. Government Printing Office, HRD-80-24. January

21.1980.

(6) Austin. D. M_ -Admuustrauve Considerations in the Improvement of Human Se -vices at the State

and Local Levels.- Paper prepared for the Select Panel on Coordination of Service to Children and

the Elderly. National Academy of Public Adniinistrat:on. Council of State Governments. January

1980.

( 7) See. for example Office or Management and Budget. "Staff Working Paper: Hurrin Services

Study." President's Reorganization Project. July 1978.

(g) Porter. P. Chief of Pediatrics. Cambridge City Hospital. Cambridge, Mass. As reported to the Select

Panel_

( 9) Lefkowitz. B. and D. Andrults. 77The Organization of Primary Health and Health-Related

Preventive. Psychosocial. and Support Services for Children and Pregnant Women.- In Better

Health for Our Children: A National Strategy. Vol IV. Washington, D.C.: U.S. Government

Printing Office, July 19E1.

(10) Porter. P. L et aL -Municipal Child Health Services: A Ten-Year Reorganization.- Pediatrics 58:

704-712.1976.

( 1/ ) M. -The Role of City Government in Personal Health Services.- Conservation of Human

Resources, Columbia University. No date.

( /2) Comptroller General of the United States, US. General Accoutiting Office. -Early Childhood and

F 'ly Developmeni. Programs Improve the Quality of Life in Low Income Families." Washington:

U. Government Printing Office. HRD-79-40. February 6,1976.

(13) M M. A., R. S. Donaldson. and M. R. Serval& "Comparisons Between 0E0 NeighborHealth Centers and Other Health Care Providers of Ratings of the Quality of Health Care:-

can Journal of Public Health 61(7): 1294 -1306, July 1971.

( /4) McC y. B. J. Testimony presented to the Select Panel. Atlanta. Ga.. November 2,1979.

( 15) M y. B. J., B. Abbott. and J. S. Terry. -Teenage Pregnancy in Georgia: Defining the

Prob - Journal of the Medical Association ofGeorgia. pp. 373-378. May 1979.

( 16) F A. M -The Organization and Financing of Child Health Services.- In Better Health for Our

Children: A National Strategy. Vol IV, Washington. D.C.: US. Government Printing Office. 1981.

(17) Tompkins. R. F. -Understanding Children Advocacy in the Health Sector." Pediatrics 65:

172-178, January 1980.

370

`)

1-1 (i1
CHAPTER 11

FEDERAL ADMINISTRATIVE

ARRANGEMENTS

The Congress specifically asked the Panel for advice about "appropriate methods for coordinating and consolidating, within an agency and

between agencies, the administration of child health promotion pro- grams?' This request stemmed in part from a widely shared perception

thin Congress, the Executive Branch, and the broader child health

community that the many federally sponsored programs relating to maternal and child health too often function in isolation. One hears often

of fragmentation, duplication, and lack of coordination, both at the Federal level and at the State and local levels, where administrators working with more than one program must frequently deal with different eligibility standards, regulations, and reporting forms; and families face a

complex and bewildering array of i3=Ith service programs that they must piece together to meet their needs. Although this is a problem in many

sectors that rely on Federal funds, it is especially burdensome in the child

healti arena, given the objective of continuous, comprehensive care. In the previous chapter, we suggest a rvumber of ways to clarify and in

some instances restructure State-Federal relationships in the administration of various maternal and child health /37.;..r:..:arns. In this section we propose several changes at the Federal level to enhance the ability of programs at the Sxatc and local levels to accomplish their goals; arid, more generally, to eriable the Government to attain the numerous policy

objectives described throughout this report and detailed in volume IL The Federal level changes proposed by The Panel include: Creation of a Maternal and Child Health Administrz'...on

(MCHA) as a new agency of the Public Health Service (FHS) Steps toward a new relationship between PHS and the Health Care Financing Administration (HCFA) Creation of a National Commission on Maternal and Child

Health

Identification by the Secretary of the Department of Health and Human Services (DHHS) of a person to be responsible, as the

agent of the Secretary; for coordinating maternal and child health

policies both inter- and intradepartmentally

Increased congressional attention to improving the coordination of programs that are the responsibility of different committees.

371
Strengthened expertise in maternal and child health in the

regional offices of DH HS

These suggestions are grounded in several assumptions. First, the Panel

recognizes that people and bt'ir values, far more than organizational

structures, are the critical in program coordination and success.

Energetic and competen: thin DHHS and in other departments,

backed by strong staff ,:tioning With the full support of a

committed DliFIS Secret,. . rticular, are likely to achieve more for

maternal and child health man any administrative rearrangements.

although such realignments may facilitate the actions of a committed

leadership. Second, the Panel recognizes that the current plethora of

programs in the maternal and child area exists not through carelessness or

misguided management. Rather, it accurately reflects multiple policy

objectives, congressional jurisdictions, the styles and preferences of

leading administrators within DHHS. political priorities of past years, and

the pressures and interests of selected constituencies. Moreover, a focus on

maternal and child health in numerous Federal programs, departments,

and agencies reflects as much the importance of this issue as it does

"fragmentation and iuplication." That is, if a topic is of national

importanceas is the health of our mothers and childrenit is logical

and even desirable that programs addressing it be fOund in many places.

The Panel recognizes and celebrates the value of some diversity of effort.

Finally, we are keenly aware of the disruption and lack of success that

typically accompany major organizational shifts undertaken in the

absence of clear cut policy objectives. Organizationand therefore

reorganizationmust derive directly from new policy commitments and

widely shared perceptions ofproblems. Thus, the suggestions for organizational change outlined in this chapter are viewed as necessary steps toward

the, major new policy directions recommended throughout this report. and

as appropriate responses to many of the difficult issues and social trends

identified in 'the course of our work. Some of the policy directions and

problems which provide the underlying rationale for the Panel's suggested

administrative ch.:ages we suggest include:

The! Panel's call for an aggressive national commitment to

protecting and promoting the health of mothers and children

2-he proposition that a core set of basic,. essential services for

women, infants, and preschool children becomes universally

avfAilable without delay The expanded role proposed for the Title V program, vhich

includes a significant new set of responsibilities for materna. ,nd

child health authorities at the State level

The Panel's proposals to change various financing systems to

extend and improve health services for mothers and children

The need for more advocacy for the special health service needs of

mothers and children, particularly in light of expected demographic trends over the next several decades

The need for a clear focalipoint within DHHS for the various

advocacy and constituency groupc, concerned with improving

maternal and child health

372 7 0
The Pant.:1 believes that for these new policy directions to be implemented most iqTectively and forcefully, is it essential that the administrative

changes argued for here occur. Whatever temporary dislocations may be caused by these changes are more than justified by the anticipated

resultimproved health status and health services for mothers and

children.

A MATERNAL AND CHILD IrMAJLTH

ADMINISTRATION

In reviewing DHHS administrative arrangements governing maternal and child health programs, the Panel noted a central organization

problem it believes significantly hampers the ability of the Federal Government to care ik;: the health needs of this population: at present, there is no clear departmental "home" within DH HS for maternal and

child health. Programs related to the health needs of this population are

found in several parts of the department with insufficient coordir.atiop

and communication among them. For example, the adolescent pregyancy

care and prevention activities authorized by P.L. 95-626 are located in /Lc Office of Adolescent Pregnancy Programs (OAPP) within the Office of the Assistani Secretary for Healthquite separate from the obviously

complementary activities of the Office of Maternal and Child Health within the Health Services Administration. This lack of a central focus is

worsened by the low position in the bureaucracy of most maternal and

child health programs, especially the Title V program which is within an Office within a Bureau, within an administration, which itself is only one of six PHS agencies. The Panel believes that this combination of

fragmentation and "low profile" for maternal and child health programs

results in a lack of clear policy direction, and insufficient support, advocacy, a..d visibility for the relevant programs. We have concluded

that an organizational entity at a bureaucratic level closer to the Assistant Secretary for Health 3 the department Secretary, and focused on the preventive, primary care, and specialized health services required by mothers and children would greatly strengthen Federal health efforts on behalf of this population. Accordingly, the Panel recommends that the Secretary of DHHS establish a Maternal and Child Health Administration (MCHA) as an agency of the Public Health Service. * This Administration should include the following program components at a minimum:

The existing Offic:.- of Maternal and Child Health, which

administers Title V, Supplemental Sectrity Income health services

for disabled children, and programs directed at selected maternal arid child health issues such as sudden infant death syndrome, geaetic screening and services, sickle cell dis -7ase, and hemophilia The Office of Adolescent Preg rcy Programs, which administers

the activities authorized by P.

°One panel raer. sber dissents from this recomrrscndation. (See appendix D.)

373
DEPARTMENT OF HEALTH AND HUMAN SERVICES

M.11..MIIMMON

Office of the

Secretary

Office of

Human Ord Orel

Swaim

Office or Program

Coordination and Review

Alkalisation for

Olidrat, Youth

awl Familia

Adminittation on

Administration for

*pinta Diabilitits

Administration for Native Americans

Key: Major &Okra for AICH

Public Health

Sim

P. Center for Disease Control

Food and Drug

Administration

Health Care Financing Administration

_Office of

Salitil Programs

Health Resources Administration Health Services Administration

Alcohol, Drug Abuse

and Mental Health Administration

National Institutes

o' Health

Regional

Offices

Health Standards and Quality Bureau

Bureau cf

Quelity Control

Bureau of Program Operations

'N. Bureau of Program Pol icy

Bureau of Support Services

1) ea', 4

s1;

SOCIal SCCUflty

Administration -

pike of Child

Support enforcement

Office o Assessment Office of

Central Operations

Office of

Family Assistance

Office o'

Governmental Affairs

Office of

Hearings and Appeals

OffiCr of Management,

Budget and Personnel

Office of Operational

Policy anc Procedures

Office of

Policy

Office 0

Public Affairs

Office of

Systems
Offices of:

International Health

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Environmental Affairs --midi--

Office of Population N.-.

Affairs

OFFICE OF ADOLESCENT

PREGNANCY

Smoking and Health

Health Maintenance

Organizations OMMOOMIRONIIINX=IIIIMONNIO

Intergovernmental

Affairs

P H S

Regional

Offices

Office of Disease

Prevention & Health

Promotion

Public Health Service

Office of the Assistant

Secretary for Health

and Surgeon General

Office of Health

Information, Health

Promotion, and Physical

Fitness and Sports

Medicine

Other staff offices

Office of Health Office

Reseirch, Statistics of

and Technology Management

Office of

Planning and

Evaluation

National Center for Health Services Research

National Center for Health Statistics

L_ National Center fcr Health Care Technology

Operating Agencies Key: PRIMARY FOCUS IS MCH I 1 1

Major significanc:e for MCH ADAMHA CDC FDA HRA HSA NIH
Bureau of Community

Health Services

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Services Administration

Office of the

Administrator

7;71

FOR

MATERNAL AND

CHILD HEALTH

tommrimormmai=m

Staff offices

PROGRAM OFFICE

FOR

FAMILY

PLANNING

Staff offices

SMIIIIL11001.10

Indian Health

Service

Bureau of

Medical

Services

Program Office

for National

Health Service Corps

Division of

Policy Development

Key: PRIMARY FOC1 IS MCH

Major Significance for MCH

Division of

Health Services

Financing

rogram Office

for Migrant

Health

Program Office

or Community

Health Centers

Division of

Organioion

Development

( 376

Division of

Monitoring and

Analysis

Program Office

for

Rural Health
Family planning services supported through Title X of the Public Health Service Act.

The Maternal and Child Health Administration would function as the

cleakly designated leader for maternal and child health activities within DHHS. The following functions, at a minimum, should be assigned to the Maternal and Child Health Administration:

(1) Responsibility at the Federal level for operating and coordinating all aspects of the three programs listed previously including

their service, research, and training components. In so doing, MCHA should not diminish the capacity of these programs

such as the sickle cell and adolescent pregnancy programsto make direct Federal grants to community based organizations. (2) Authority to review end comment on the proposed budgets, legislation, regulations, reporting forms, and other proposed

policy issuances developed by other agencies within DHHS that conduct programs directly related to maternal and child health with ) the aim of such activities being to improve program

coordination at the local level in particular. Relevant programs

include:

The Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program of Medicaid and other Medicaid policies which affect large numbers of children or pregnant women

The Community and Migrant Health Centers Program of the Bureau of Community Health Services Various other health service programs of PHS, including those of the Alcohol, Drug Abuse, and Mentr.1 Health Administration (ADAMHA)

Title XX (Social Services, including day care) Head Stait

The Developmen:al Disabilities program

Title IV, Aid to Families with Dependent Children The Nation-al Inititute of Child Health & Huinan Develop- ment

Selected programs within the Centers for Disease Control (CDC) including immunization, lead poisoning and veneral disease risk reduction

The maternal and child health activities of the Appalachian Regional Commission

In discharging this review and comment function, MCHA

should take into account the vicvvs of various departmental coordinating offices already in existence such as the Office of the Deputy Assistant Secretary for Population Affairs. We also note

that there should be some reciprocity in the review and comment function noted here; that is, programs not included in MCHA

such as those listed above should be able to review and comment

or_ proposed regulations, reporting forms., and similar encuments developed by MCHA which directly affect their programs. (3) Assistance to the States on maternal and child heal& related

topics, with the aim of creating and coc inating a system of services to ensure that all motheis and children have access to

3 7 7 377
needed -ervices. especially those in the set of minimum, basic

services. such assistance should include provision of technical

assistance to the States in the areas of planning, coordination, reporting procedures, and quality assurance; coordination with

the Health Standards and Quality Bureau (within HCFA) tc-,

define in mutually acceptable ways the uniauc responsibility of

State maternal and child health agencies and Professional

Standards Review Organizations (PSRO's); and coordination

with the health planning program to develop appropriate

standards for State and multicounty health plans, and criteria for

the "appropriateness" reviews and Proposed Use of Federal Funds reviews carried out under the Health Planning Act.

(Chapter 10 discusses some of these State-oriented functions in

detail.) (4) Respnnsibilitv for setting national standards by which to assess

the cA e q ua c y of the Sates' progress in ensuring the availability

of the minimum set of basic essential services: prenatal, delivery

and postnatal care: comprehensive care for children from birth

through age 5; and family planning services. Such standards

should be developed in conjunction with the National Fealth

Planning Council -and related planning bodies: the Board on

Health Services Standards that we propose in chapter 5; the

relevant professional societies, advocacy, and consumer groups;

and other appropriate groups.

(5) Coordinating the maternal and child health programs.of DHHS

with related programs in other departments, such as the

Supplemental Food Program for Women. Infants, and Children

(WIC) within the Departr,ent of Agriculture, the Education for

All Handicapped Children Act (P.L. 94-142) within the Department of Education, and the-CHAMPUS program operated by

the Department of Defense. (6) Research needed to improve the agency's programs and to

manage them effectively, which includes the ability to request

and purchase needed research from other departmental agencies

such as the National Center for Health Services Research.

(7) Advocacy within Di-IHS and directed to other departments and

the Congress regarding policies and programs to improve

maternal and child health.

With regard to locating the adolescent prel.:,nancy program in MCHA,

the Panel is aware that the Office of Adolescent Pregnancy Programs

(OAPP) and the grant program it administers.are concerned, among other

things, with services such as vocational education and day care, which

have not traditionally been considered a part of health services. There is

some concern about whether such a multifaceted program b.-longs in a

"health" agency such as MCHA. However, it is our intent that .the concept.

of maternal and child health governing MCHA should embrace a ve- j

brOad spectrum of services, as suggested by our needed services lists

1(chapter 5). and that therefore OAPP would easily fit within the new

agency. We concur in ;particular with the orientation of OAPP that the

services needed by these young people include, for example, specialized

378 J
educational programs. counseling, day care, 4lid other servicesmost of which, are enumerated in the core and supplemental services incorporated

in the description of the grant program in P.L. 95-626. To help ensure that these broader features of the program, as well as its prevention and

coordination roles, are not lost in the shift to MCHA, the Panel suggests

that the OAPP's state as a separate Office with its own director be maintained within MCHA. This will also help to continue focusing public

and DHHS attention on this significant social problem. When this program is considered for reauthorization in 1981, we urge

the Congress to review carefuily the placement of OAPP within DHHS. Even if MCHA has not been created, we suggest that the Office be placed

in a more appropriate location. We also urge the Congress to .eview the

implementation of the legislation establishing this program; it is our

impression that in the interest of providing services to young women

already pregnant. too little attention has been given to pregnancy

prevention. We also note that, even though urge that Title X family planning

services be included in MCHA, v4 -.hare the long-standing concern of advocates of the Title X program th ... it not be a .orbed legislatively into

related programs such as Title V, which also supports family planning. As we discuss in chapter 7, the Panel s:--ongiv endorses the continuation of categorical funding fur family planning as embodied in Title X and does not see the proposed MCHA as changing the nature of Title X itself. We believe, however, that MCHA will provide an environment that will promote more cohesion between the various family planning r grams. Beyond these few comments, the Panel has chosen not to recommend how MCHA should be structured internally. However, as discussed in

volume II of this report. we do recommend that the Title V program be

established in legislation as a Bureau, which we refer to as the Bureau of Maternal and Child Health Services (BMCHS) ( /). Programs recommended for assignment to MCHA do not include every possible maternal and child health program or piece of programnotably

those listed above under duty number 2 for MCI-IA. This is because the Panel believes that it is a false goal to try to place in a single agency all the programi that bear on the health needs of this population_ Instead, the

aim should be to assemble a critical mass of people and dollars capable of serving as the lead agency for maternal and child health within DHHS

and, providing much of the program coordination that is currently lacking. In our view, the primary value of MCHA is not that it would be the sole

repository of all maternal and child health programs, but rather that it would be an organizational entity high enough in the bureaucracy and of sufficient sta ture and prestige to coordinate various programs and sources of funds in niariy separate agencies and to provide leadership in achieving

the goal of ensuring that health services are provided in a coordinated

fashion. .Increased coordination among publicly financed programs is, in

the Panel's view, as important as-intreasing the scope or appropriations of any single program. This is true most G f all at the local level, where program coordination is crucial not only among public programs, but also

-between public and private efforts_ Nonetheless, we also urge that the Secretary of DEIHS. the Assistant Secretary for Health, and the Administrator of the new Maternal and

379

3 79
Child Health Administration, and other departmental leaders periodically

review the wisdom of adding other maternal and child health-related

program., to those 1:,.ted here. Programs within DHHS which the Panel

saw no need to move at present but which could logically become a part of MCHA at some future time include, for example, the lead poisoning

prevention and immunization -activities of CDC and the Developmental Disabilities program of th.t Office of Human Development Services

(OH DS). A principal function of MCHA should be to encourage a variety of other DHHS programs to pay increased attention to issues of maternal

Ind child health. For example: Institutes within the National Institutes of Health, beyond the National Institute of Child Health and Human Development,

should be encouraged to sustain and increase their attention to

maternal and child health problems that fall within their research

mandates. ADAMHA should be urged to increase the extent to which its

various activities relate to children, including the effects of adult

alcohol, drug zbuse, and mental health problems on children.

The Health Resources Administration should be urged to focus its various health planning activities more strongly on the health

needs of mothers and children. The National Center for Health Services Research and the

National Center for health Care Technology shoo' 3 be urged to devote a higher proportion of their research and evaluation

activities to maternal and child health.

Many more examples could be cite'. The important point is that

although none of these programs should be included in MCHA because

they are embedded in larger programs dominated by different social

objectives or function's, all can non..,theless make important, often

irreplaceable, contributions to maternal and child health. What is needed

is greater emphasis within these programs on this population, and better

coordination with other relevant programs. This is especially true of such

DHHS programs as the community health centers, the National Health

Service Corps, and the rural and urban health initiatives. Some of these

programs are not providing health services to mothers and children, and,

must be encouraged to do so; and even those that do could do`

substantially more (2). The Panel believes that an agency such as MCHA

is needed to help ensure that these various programs pay adequate

attention to the health needs of mothers and children. Such leverage

would be exerted through a variety of mechanisms including the review

and comment function noted earlier, interagency agreements, our proposed'Commission, and, of course, the leadership exerted by the MCHA

administrator, colleagues, and outside advocates.

There are a few limitations associated with this proposal that the\Panel considered specifically. The first is that by removing the OffiCe of

Maternal and Child Health and the Office of Family Planning from the

Bureau of Community Health SeT'VICCS (BCHS), services for mothers and

children are being separated from the Federal grant programs supporting

Community health centers. rural and urban health initiatives, and migrant

380
health services in particular. Furthermore, withdrawing these programs

from BCHS flies directly in the face of policies promoting family centered. comprehensive care. The Panel agrees that the new MCHA will need to make special efforts to retain the present close tics among these programs. However, the Panel also believes that the health needs of mothers and

children will best be served in the long run by lodging programs directed

toward this population in one agency with a clear maternal and child

health focus. Experience has repeatedly shown that it is all too easyand politically safeto give inadequate attention to the needs of mothers and

children, especially those who arc poor, when they are forced to compete with other groups for attention and resources, as evidenced by the number or community health centers and other grant programs presently not providing comprehensive maternal and child health services (2). A second issue considered by the Panel is that the head of an

administration or agency is a political appointee. whereas the head of a bureau or office tends to be a career appointment. This raises the specter of MCHA becoming more vulnerable to electoral and congressional pressures, and therefore more political in discharging its duties. The Panel's view is that such political visibility is as much a potential advantage as a disadvantage. The presence of a political appointee at the head of MCHA may well work in favor of the health needs of mot:Iers and

children. At a minimum, for example. di-- attention of the DHHS

Secretary is captured by the task of naming an administrator. More

sigv:ificant, an agency administrator has more opportunities for access to

the Secretary and key department leaders than does an individual holding

a lesser office. Further, a skilled political appointee may be especially

effective in the important advocacy function. A third possible limitation is that the proposed MCHA would be the only agency of PHS with a population rather than a functional orientation. In the Panel's view, the importance of the groups to be served by this new agency and the significance of their special needs more than

justify whatever apparent inconsistencies would result from creating this

agency. Consideration was given to whether bureau status for the proposed

collection of programs and duties would be preferable to creating a new

agency. Although a bureau would definitely provide a clearer focus for

maternal and child health within the department than currently exists, the Panel believes an agency would be better able to perform the proposed

duties, particularly those associated with providing departmental leader- ship for ma.ternz..1 and child health and interdepartmental coordination. An agency rather than a bureau would also highlight the new national priority thal the Panel argues should be accorded maternal and child

health and the commitment to ensuring the availability or the :-,et of basic, essential services. Certainly if a national health financing plan is to begin with universal coverage for mothers and children as the Panel advocates

(see chapter 9), an organizational entity with at least the visibility of an

agency rather than a bureau is warranted. Such art agency, in concert with HCFA, would be the logical set of offices and programs within DHHS to

administer NHI. Thus the Panel believes that the MCHA is consistent

with both its immediate goals of increased program coordination and

381
prominence, and its long-term goals of national health insurance beginning with mothers and children.

THE RELATIONSHIP BLTWEEN PHS AND I ICFA

An obvious candidate for possible inclusion in MCHA is the EPSDT

program of HCFA which, as part of the Medicaid program, is administered by the States. The Panel reviewed this option carefully and

concluded that although moving EPSDT to MCHA has a certain initial

appeal because it is a major source of child health funds, this would not be

a wise move in the long run for two reasons, First, removing Ei.'SDT from Medicaid where it is legislatively based,

would create not only significant management problems, but also the

likelihood of increased operating problems at the State level, and the high

probability of resulting major delays and disruption in providing EPSDT

services to children.

The second and more significant reason is that the Panel believes the

relationship of MCHA to EPSDT is only a small part of a much larger

is. ue the relationship of the entire Public Health Service to the Health

Care Financing Administration. The outlines of this problematic relationship were summarized well .for the Panel in a paper it commissioned:

The Medicaid program was begun and continues as an offshoot of

the welfare program. It was not c,,aceived 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 [the Department of Health, Education, and Welfare]. 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 att.mtion, and the effects of rapid rises in health care

costs have fok.us:;d attention on cost containment rather than health

needs.

Two important developments have taken place recently_ The first

was the development of the Early and Periodic Screening, Diagnosis

and Treatment (EPSDT) program. which attempted to use the

Medicaid program in a 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 [Child

Health Assurance Program] proposal would carry Medicaid much

furthei toward becoming a program for improving the health of its

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

382 3 1 ti
framework for Medicaid and Medicare, IL difficult task given the

very different characteristics of the two programs. This intent is

illustrated in the HCFA organization, which dock not have a

separate organizational unit for Medicaid. -It Is reasonable to

speculate that HCFA probably would administer an likelf expan- sion of the Federal health financing role. HCFA is often described 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 Tao lowing many of the patterns of private

health insurance, have reinforced the characteristics of the existing health system with its emphasis on hospitalization, specialized

services, episodic care, and its disincentives for primary care, preventive services, and continuity of care. The addition of the PSRO's [Professional Standards Review Organizations] 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 reimbursement. EPSDT and CHAP seek to change those patterns for some aspects of child health services. However, many other programs, mostly in

tfie Public Health Serv;--e , have been attempting to expand

the capacity for. prin.... Are of pool.: populations in underserveci areas. Other PHS prog- ...ins have created and supported innovative patterns of care inciuding health maintenance organizations

(HMO's). midlevel practitioners, ,pretention and health promotion

programs. Still other PHS programs support systems of information gathering and data generation, health planning, and resource '1/4

development. Since the creation of Medicaid, there has been difficulty in the

coordination of its policy and oper-4.tions "with those of PHS. Examples of effective coordination can ge 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 nced 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 local 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 maternal and

child health, because of CO EPSDT and CHAP; (2) the strong

emphasis in PHS on primary care including disease prevention and health promotion, which are especially large components of mater- nal and child health services; (3) the need .to work with other programs and public delivery system's, such as schools and public

383

i>
health departments which do not ht-s 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 or the large dollar

flow through Medicaid (3). The Panel shares this assessment of the PHS-HCFA relationship and

therefore viewed the idea of moving EPSDT to MCHA as a piecemeal

approach to a difficult problem. Instead, we considered a variety of ways

to link the service orientation of PHS with the financing and management

capacity of HCFA for the benefit of mothers and children in the

immediate_ future and for the full population over the longer term. Given

the possibility that any extension of the Federal health financing rote to

increase health services for mothers and children would rely heavilli\on

HCFA. the Panel believes it is a matter of some urgency that HCFA-.and

PHS be brought into a closer relationship. The, creation of MCHA and

other actions outlined later in this chapter are steps in that direction, but

are not sufficient to solve the problem. And radical suggestions such as

transferring all of the community oriented activities of the OHS to HCFA

are easily dismissed. What seems to be needed is some mechanism to reorie.,* FICFA policies

and procedures (especially Medicaid reimbursement policies) to a greater

emphasis on the goals of health promotion and the provision of high

quality and appropriate health services, along with efficient management

of the bill-paying mechanism and cost containment. Current Medicaid

legislation, for example. does not require the reimbursement of many of

the health services which the Panel has found central to protecting and

promoting maternal and child health, such as immunizations, nutrition

se--vices, prevention oriented counseling, prenatal care provided in local

public health departments and some hospitals, and many mental health

seri;ices. Consequently, many States have chosen not to reimburse such

services. Moreover, because Medicaid reimbursement policies are tied to

welfare eligibility and because an individual's or family's eligibility for

welfare may change often, the goal of providing continuous care is often

circumvented.

One way to encourage needed changes in HCFA is the Panel's proposal

that the Congress establish a Board on Health Services Standards. As

discussed in chapters 5 and 9, this body would advise third-party payers

and other groups on the health services needed by mothers and children,

on the circumstances under which many services are best provided and

financed, and on the relationship of payment practices genet-11y to the

structure and functioning of the health system. A major audience for such

guidance is, of course, HCFA. We have proposed that the Board's powers

be advisory. We also recommend, however, that the Board he set up in

such -a way that pressures arc created to- encourage HCFA and other

public third-party payers in particular to attend carefully to the Board's

views. For example, we suggest that if HCFA chooses not to follow the

Board's advice regarding a particular service or set of services, HCFA be

required to report to the Secretary of DHHS and to Congress in a highly

visible way why it is rejecting the guidance. That is, the burden should be

on HCFA to say why not, rather than on the Board to say why. If. for

384.-
example, the Board reviews carefully the issue of home visitingthe

content of such visits, that levels of professionals that should conduct home visits, the various ways such visits should relate to existing provider arrangements, their costs and benefitsand recommends that third-party

payers finance home visiting under certain specific conditions, the burden

would be on HCFA to follow such guidelines to. the extent permitted by Medicaid law or, if it wishes to reject them, to defend its policies publicly. The Panel also believes that some structural changes within DHHS will be needed in the long run to focus HCFA's role on running the eligibility

and payment mechanisms with policy °determination regarding health

issues heavily influenced by individuals and structures where health

concerns are paramount. Two possible strategies toward this end are to

bring HCFA under the leadership of the Assistant Secretary for Health, or

to make both PHS and HCFA responsible, to an Undersecretary for Health. The Panel does not feel it appropriate to press a specific approach

to this problem. However, we strongly recommend that the Secretary of DHHS give serious and prompt consideration to the possibility of

restructuring the HCFAPHS relationship in order to ensure that th,-- orientation of HCFA emphasizes health promotion and high quality

health services along with efficent management and cost containment. In

so recommending, we are aware that within the last couple of years, HCFA and PHS have worked hard to develop closer ties and more

compatible policies particularly in the child health area. We are supportive of the progress that has been made, but find that the fundamental structure and orientation of the two components remain disparate. If the PHS/HCFA relationship is left to continue as is, the Panel is deeply

concerned that a national focus on disease prevention, health promotion, and primary carefor all citizens, not just mothers and childrenwill remain elusive.

A NATIONAL CO1VIIVIISSION ON NIATE'RNAL AND CHILD HEALTH

A second major initiative proposed by the Panel to complement the establishment of MCHA is the creation in legislation of a National Commission on Maternal and Child Health to perform the following

duties: Recommend policy changes in. Federal maternal and child health

program:, to improve their effeCtiveness and to enhance coordination among programs. Report every 3 years (with brief annual updates) to Congress, the DHHS Secretary, the Assistant Sedretary for Health, and the HCFA Administrator on the health status and unmet service

needs of mothers and children, including attention to important

trends, emerging needs, and possible preventive strategies. Report periodically to Congress, the DHHS Secretary, the Assistant Secretary for Health, the HCFA Administrator, and other Federal agency directors, as appropriate, on Federal research and training activities affecting the quality and availabili- lr

385
ty of maternal and child health services, and on regulatory

activities related to reducing environmental risks to the health of

mothers and children. Conduct studies and issue reports 'to the public on health issues

pertinent to children and pregnant women, as desired by the

Commission. Serve as an advocate, particularly in Congress, 'for the health

needs of mothers and children.

Further, to _ensure that the new Title V requirements outlined by the

Panel in Volume li are implemented with adequate advice and guidance,

the legislation establishing the Commission should direct it to set up a

subcommittee with special _responsibilities relating to the Title V program.

This subcommittee should be responsible for reviewing and approving the

annual Federal plan for support of research, training, and demonstration

projects under Title V_ and making recommendations to the-Director of .

BMCHS on policy matters relating to the general administration of the

Title V program. Thee duties are interrelated and mutually reinforcing. For example, the

Panel believes that the broad understanding' of maternal and child health

that the Commission will necessarily develop in producing its report every

3 years will make the annual review and approval of selected Federal Title

V plans a -1.a-v-.re meaningful and useful exercise. . The Pant.1 recommends tha: the Commission be composed of citizen

members appointed by the S3cretazy of DHHS for terms not to exceed 3

years and in a manner that allows for approximately one-third of the

membership to rotate annually. The Commission should be chaired by

one of its members, designated by the Secretary. The Commissioners

should be drawn from a wide range of fields pertinent to maternal and

child health, including but not limited to practitioners, administrators and

planners, advocates and parents, researchers, and individuals from such

areas as health education and social,services that are intertwined with so

many maternal and child health programs. No single profession or

pers.' ective should dominate, and the group's composition should reflect

the numerous aspects of maternal and child health covered by this report.

The Panel would suggest four particular categories of membership for

inclusion in the Comilnission. First; the Panel recbmrnends that the

-Commission include at least one pres.:.-nt or former member of a State

Ma:,ernal and Child Health Council (see chapter 10) to help ensure that

-the group is aware of the great range of progress, opportunities, and

problems that exist a*. the State and local "level. Second, to increase the

likelihood of a productive relationship between the Commission and the

CongregS, the Pabel recommends that the chairman of each of four

committees of Congress L asked to suggest to the Secretary ofDHHS the

names of two or three individuals to serve on the Coinmission. Third, the

Panel recommends that the secretaries of the Departments ofAgriculture,

Transportation, Housing and Urban Development, Education, and Defense be invited to name formal observers to the Commission.

Additional representatives from other departments and agencies, or from

any State or local program or outside group should, of course, be invited

to join the Commission discussions when appropriate. And finally, the

386 3
Panel recommends that an ex -officio slat on the Commission be

established for the individual or office head 4esignated by the DHHS

Secretary as the Secretary's principal agent fi,r ensuring interdepartmental coordination for maternal and child health. (See next section.) Similarly, the Administrators of MCHA, HCFA, and the Office of Human Development Services (OHDS) should be actively involved in the

deliberations of the Commission.

The Secretary should place the Commission within MCHA and ensure

th At it is provided with adequate staff and financial support. Staff should be selected by the Commission chairman to help provide independence. The Panel recognizes that Washington abounds 'with commissions and

advisory groups, and thateven those that begin their life with a clear sense of mission and commitment may over time become unimaginative bodies dulled by routine. The Panel believes that although the duties and membership of the Commission it has outlined lessen the prospect of such decline, it may be prudent to set the Commission up for a finite period of perhaps 6 years only (thereby allowing two full cycles of members). At

that point, Congress and the DHHS Secretary could assess the merits of continuing the life of the Commission.

A COORDINATING FUNCTION AT THE LEVEL. OF THE SECRETARY

ne

The Panel recognizes that the authority of the Secretary of DHHS is one of the most powerful tools available to push for the kind of program

coordination needed for MCH services. As head of the department, the Secretary and his or her agents can be uniquely effective in encouraging

even- the most reluctant agencies to work together. The Panel would

therefore urge that the Secretary designate a person to serve as the principal agent of the Secretary in ensuring that the health needs of mothers and children are addressed effectively and efficiently by the many

components of DHHS. Toward this -broad objective, and in cooperation with PHS, HCFA, and OHDS especially, this individual should undertake

such tasks as:

Encouraging formal interagency agreements on specific issues Convening of interagency task forces under the auspices of the Office of the Secretary to work on specific problems Helping to ensure that the formal review and comment function

assigned to MCHA occurs routinely

- Serving as an ex officio member of the National Commission on

Maternal and Child Health Assisting MCHA develop its position as the lead agency for maternal and child health by including it in appropriate decisions and discussions at the Secretary's level, and facilitating discus- sions between MCHA and other agencies and departments as needed

It is the Panel's view that-such assistance and leadership from the Office of the Secretary would complement MCHA and the Commission, and that

.s 3 8

387
in the aggregate all three components hold the promise of meaningful,

tangible progress within DHHS to benefit mothers and children.

JOINT HEARINGS

The Panel believes that the Congress also has a special role to play in

helping to coordinate maternal and child health programs both inter- and

intradepartmentally. It is widely- recognized that one of the reasons

programs may not complement one another adequatelyeven those

administered within the same departmentis that each may be under the

jurisdiction of a different Congressional committee, which in turn

typically implies different program orientations, constituencies, priorities,

and so forth. For example, two of the most important programs for

mothers and children within DHHS, Title X and Medicaid, are under the

jurisdiction of two different committees of the SenateLabor and Human

Resources, and Finance, respectively. Furthermore, we find that the

fragmentation caused by such different jurisdictions is compounded when

programs are also administered in different departments. For example, the

WIC program and the PHS programs are not only under the jurisdiction

of separate committees, but also administered in different departments.

Although a long-term goal for bringing such programs into closer

alignment might be a reorganizing of congressional jurisdictions with

regard to maternal and. child health programs, we find such a suggestion

politically untenable at present. As a more feasible and practical goal, we

instead recommend that within both the House and the Senate, joint

oversight hearings be convened periodically by the committees having

responsibility for different maternal and child health related programs in

order 20 assess the adequacy of the various programs' coordination and

cemplementarity. We place particular emphasis on hearings regarding the

coordination among maternal and child health programs administered by

different departments. For example, to assess the relationship kretween the

WIC program within USDA and the various health service defivities of

the Public Health Service, joint oversight hearings should be held on the

Senate side by the Agriculture Committee _and the Committee on Labor

and Hutnan Resources; on the House side, the appropriate committees

are the Committee on Education and Labor and the House Interstate and

Foreign Commerce Committee. Other possible topics for joint hearings include:

The extent to which community mental health centers supported

by DHHS (NIMH specifically) meet the mental health needs of

handicapped children served through the P.L. 94J42 program of

the Department of Education

The relationship between DHHS efforts and those of the Department of Housing and Urban Development to'minimize risks of

lead-based paint poisoning to children specifically and more

generally to promote safe housing

The relationship between automobile accident prevention programs within the Department of Transportation and parallel

interests within DHHS

388 35&
THE ROLE OF THE REGIONAL OFFICES

As an arm of the Federal Government, the regional offices of DHHS

have a unique potential for easing many of the problems of program

coordination described above. However, the Panel did not give extensive attention to the role and functions of the regional offices, primarily

because many of the concerns that have been raised over the years about

the performance of the regional offices are not specific to'maternal and

child health but instead center on a more general problemnamely, that

the authority of the regional offices has long been unclear because they

are caught between Washington and the Stales. Regional staff are often

forced to cope with program inconsistencies, rigidities, poorly conceived

objectives, and changing directives from headquarters. They are subjected

to criticism from both sides as they are called upon to correct the

ambiguities and imperfections of Federal programs. Although the Panel

offers no comprehensive plan to improve the regional offices, part of the

Success of our proposal to expand and strengthen the Title V program and

to increase-the availability of a set of minimum, basic services will depend

on the ability of the regional offices to provide expert advice, consultation, and guidance to the States in discharging their increased responsibilities.

Moreover, the regional offices will need to assist the Federal Government

in monitoring the adequacy of State performance in many diverse areas, including _statewide planning, quality assurance of mat,:-.rnal and child

health services, and compliance with whatever service standards MCHA

establishes with regard to the minimum, basic services especially. To

increase the capability of the regional offices to discharge their' responsi-. bilities under the proposed mandate of MCHA, as well as to improve their

relationship to existing programs, the Panel recommmends that:

(1) The regional maternal and child health staffshould be adequate

in number, training, and experience t_ o carry out assigned

responsibilities, particUlarly in helping the States assume a

stronger role in improving maternal and child health. The

regional office staff should include 'qualified individuals (prefera- bly with State or local experience) in such fields as medicine, nursing, social work, nutrition, dentistry, and epidemiology- statistics. The regional offices should also retain adequate staff skilled in the fields of planning, management, and related

;administrative functions to assist the States. (2) Expertise in other disciplines such as speech and hearing, physical or occupational therapy and health education should be

available either from the central office or staff assigned to cover

two or more regions. (3) Regional staff should be permitted to work full-time with their

assigned States to improve and extend health services for

mothers and children. To dor'so, staff should be both advocates

of the States to the Federal Government (through such activities

as representing the State perspective in various Federal forums; making States aware of available grant funds, and helping them

to obtain them; advising States regarding allowable flexibility in

interpreting regulations in order to expand and enhance services;

389
and interpreting Federal guidelines and policies to the States)

and ''prodders" of the States (by such activities as program

development, providing,program models from other areas, and

developing improved capacities for evaluation, planning, staff

training, and constituency building). (4) Regional staff should not only give attention to programs within

MCHA, but also to other DHHS-funded programs which-have

maternal and child health service components such as Medicaid;

the major grant programs of HSA, such as the Community

Health Centers; the grant programs of HCFA; and' programs

such as WIC and P.L. 94-142, which are funded. by departments other than DHHS but bear di,rectly on maternal and child

health.

Achieving this maternal and child health focus in the regional offices

might be facilitated by there being a designated maternal and child health

representative in these offices.

REFERENCES AND NOTES

(I) Select Panel for the Promotion of Child Health. Better 1-1 ea.lth for .Our Children: A National

Strategy. Vol. 11. Washington, D.C.: U.S. Government Printir.g Office, 1981.

`12) Comptroller General of the United States, U.S. General Accounting Office. Better Management

and More Resources Needed To Strengthen Federal Efforts To Improve Pregnancy Outcome.

Washington. D.C.: U.S. Government Printing Office, MID-40-24, January 1980.

(3) Yordy. K. D. "Federal Administrative Arrangements for Maternal and Child Health." In Better

Health for Our Children: A National Strategy, Vol. IV. Washington: D.C.: U.S. Government

Printing Office, 1981.

ge

390
SECTION

MANPOWER AND

RESEARCH

CHAPTER 12

F&AILTH PROFESSIONALS

Because several other groups have completed or are developing major

reports on manpower issues relevant to maternal and child health policy,

the Panel chose not to perform a comprehensive manpower analysis of our

own /;(1, 2). Nonetheless, we recognize that the views and recommendations presented in other sections of this report contain major policy

implications regarding the training and deployment of professionals* in

rmaternal and child health. As we see it, these include: The changing profile of primary care for mothers and children,

with its emphasis on health promotion and disease prevention

activities, requires new components in the training of all primary

care providers. Meeting the health needs of pregnant women, children, and

adolescents in an adequate fashion will increasingly require a

team approach to the delivery of primary care, and exposure to

team modes of practice must therefore become an integral part of

the training of primary health care professionals. The anticipated increase in the overall supply of primary health

care providers in the coming decade makes possible, but does not

by itself assure, better access to health care for those most in need.

Improved distribution of services will depend, among other things,

on alterations in the deployment of National Health Service Corps personnel and on creative use of providers with differing levels of

training and expertise. . Training of maternal and child health personnel involved in

program administration and policymaking at the Federal, State or

local level must be modified to equip such professionals with the

broad range of,skilIs required for management roles in complex, interrelated service systems (public health, private medical practice, social services, education, etc.). In the discussion that follows, we have focused primarily on the

"frontline" providers of health care for mothers and childrenphysicians,

nurses, midlevel practitioners, and dentists. In so doing, we in no way wish

to suggest .that these are the only professionals who are significant for maternal and child health. Indeed, as we have repeatedly stressed

throughout this report,-adequate health-care for mothers and children now

requires the skills and expertise of many other professionals in addition to

393

39j
i

.. or Y

%z r A'

,--

-:.:. C

- .3 : ' . --' .

- ,-- - traditional medical fIcrsonnel. Teachers,-nutritioni§:ts, Psychologists, social

workers these are bcsit a few of the groups with significant contributions

...., to make in maternal and child health care. We limit our focus in this

chapter only because of the restrictions on our time and staff resources

and because other bodies are in the process of addressing manpower

issues in greater depth.

J

THE CHANGING PROFILE OF CARE:

TRAINING IMPLICATIONS

As discussed earlier in this report, the- profile of maternal and child

health needs has changed significantly over the course of the last few

decades, a development that requires a concommitant change in the

training of primary care providers and the way in which they practice. The

growing importance of psychosocial factors in health care, and our

increasing emphasis on health promotion and disease prevention activities

in the delivery of health services, must be reflected in the training of health

care providers, especially those providing primary care services. This

means that: Training programs for such health professionals must be enlarged

in scope so that these individuals not only acquire skill in coping

with disease processes but also gain a firm foundation in human

growth and development and understanding of the influences of

genetic, familial, environmental, and social factors on the health

status of children and mothers.

The importance of nutrition, counseling, prevention of dis .e/Ase,

and education for health-promoting behavior should become

firmly established components of training and practice, and

should be reflected in requirements for entry. into the health

professions and for continuing education.

There are encouraging signs that the health professions are moving in

the right direction. The training and pr-7-:ctice of nurses engaged in

maternal and child' health care have long emphasized precisely those

concerns the Panel sees as central. The American Nurses' Association is

currently offering certification examinations in the primary care specialties which serve as a credentialing mechanism.-analogous to the medical

boards for physicians. The National* Association of Pediatric Nurse

Practitioners and Nurse Associates also )ffers certifying examinations,

and it is worth noting that the training of t.;-.ese midlevel practitioners

offers an excellent integration of medical 'skills with psychosocial and

public health aspects of care. At the physician level, the recent report of the. Task Force on Pediatric

Education stressed that medical education for primary care physicians

should emphasize human growth and development and the biosocial

aspects of pediatrics and adolescenVmedicine-(2), a recommendation with

which the Panel concurs. In fact, a similar emphasis is needed in the

394 3 cs
training of all primary care physicians who see substantial numbers oc, pregnant women, mothers, and children. 41-hi includes obstetricions-

-gynecologists, general practitioners, family.. practition?rs, and internists. The Panel is aware of the magnitude of the difficulty in effecting change within professional education programs. One of the major problems is that: medical education remains for the greater part oriented to acute illness and hospital care. In the hospital setting, care of the more serious diseases of mothers and children is, taught, and it has been very easy to assume that disorders not requiring hospitalization are simple and can be handled

using the same knowledge gained by caring for hospital _patients. As a. result, physicians learn a great deal about diseases they may never see

again or will refer to specialists after initial case recognition. Similarly, in most teaching centers, inpatient care responsibilities are heavy and must be met even as changes are being-made to provide more

training experience in ambulatory care. This is far from easy, since

teaching hospitals typically depend upon physicians in training to provide direct inpatient services. Further, a number of community settings that would.-make excellent training sitessuch as mental health centers, public health clinics, school health units, comprehensive care centers, and the

likelack the financial resources 'to supporCeither .trainee or teacher. Indeed, medical schools have a difficult time financing ambulatory care

training experiences in general because outpatient services are so poorly

reimbursed compared with inpatient care. In recognition of the need for a shift in the emphasis of pediatric

training and research, the Robert Wood Johnson Foundation and W.T. Grant Foundation are supporting academic development programs in

general pediatrics at a limited number of medical s,71-lools (3). The Health Resources Administration also has had a grant program in operation for a number of years to fund general pediatricS and internal medicine training programs. Such programs are intended to improve teaching and research

in 'emerging areas of general pediatrics and to-encourage development of

innovative approaches to financing, -as discussed in chapter 9. If they

prove successful, their major elements could be generalized to other child

health care training programs.

Team Practice in Primary Care

It is obviously unrealistic to expect that physicians, nurses, and midlevel practitioners ma:: ter in depth all the fields of knowledge that bear upon

the physical and mental health of children and pregnant women. It is also unwise, 'in our vietv, to encourage practice patterns that isolate primary

care physicians. from other personnel-Whose expertise complements their owr.. Therefore, the Panel believes that many of the complex health needs of pregnant women and children are especially well met through the use of

team approaches to care involving substantial collaboration among

various types of health professionals and strong links--4,9. healn-related

support services. Teamwork in delivering health services to,this population

3

395
can have various each suited to different situations. To encourage

team modes ofpractic.,-t: The, .team concept should be firmly established in training, and

supported,, practice by .organizational and financing arrangements. . Joint training experience's should.. be _designed for various groups

of health _professionals to encourage increased understanding and

respect among the various _professions for the uniqusscontributions different disciplines can make to maternal and child health

care. The concept of a team approach to primary care d6es not- dictate

adoption of any one organizational arrangement. Team care can be

provided in an organized setting such as a corrprehensive, care center,

which brings together a number of professionals from diffeient disciplines,

or by a solo practitioner and nurse utilizing referral and consultation

linkages with a wide range of other service pioviders. What is: important is

that the concept of team care be firmly instilled in health professionals.

during their training, and that organizational and financing arrangements

support such an approach in practice. I s.

The Panel noted that there is already a trend am g pediatricians away

from- solo practice ar\cl toward work in grgj. ,tps! A 1978 survey by the

American Academy of Pediatrics (Ad4..Rrshowed more than half (56

percent) of practicing pediatricians>vereln group practice, compared -ivith

30 percent in solo practice (4). While this trend may stem largely fwm a

desire to share overhead expenses And coverage responsibilities, group

practice does encourage consultation and cooperation among health

professionals. Further, it appears that the trend toward group practice is

likely. .to coptinve and that it will increasingly incliade- employment of

midlevel professionals such as pediatric nurse practitioners. When asked

to identify the "ideal" practice pattern for the future, a plurality of

pediatricians now in practice (43 percent) and a majority of those now in

academic medicine (5.5 percent) selected a group of pediatricians, all with

areas of 'special interest, working in cooperation with pediatric nurse.

practitioners. This model, the AAP survey noted, was chosen even though

less than 5 percent of those now in practice currently follow it (4). The

Panel endorses both this model of group practice and the close

cooperation of practicing pediatricians with cdlleagues in teaching centers.

- We believe such patterns improve the quality of care and should be

' encouraged-for other primary care physicians as well:

Unfortunately, primary care physicians, nurses, midlevel practitioners,

and others typically do not receive major combined training experience, a

lack that unquestionably affects their willingnesis .1,nd ability to work with

each other effectively' in practice later-bn. For example, the AAP survey

found' a pronounced corfelation between a 'pediatrician's experience

wor ith a nurse practitioner and his or her endorsement7of the value

of such midlevel-personnel. Familiarity, in this instance, breeds r

the survey founc:. The-Panel believes greater, efforts must be ma''to

ensure that exposure to team practice- .modes becomes an integral part of

the training of all health professionals involved in the delivery of primary--

care to mothers and children.

396
. _- SUPPLY AND DISTRIBUTION OF PRIMARY

I-IIEALTH CARE PROVIDERS

Beca4se the child population is expected to increase relatively little over i

the next 10 years, while the. supply of health care providers will grow

significantly, the major manpower challenges in maternal and child health

-are not simply numerical in nature. Rather, the Nation must strive to

produce the right mix of health care providers, ensure they are trained to

cope with the real,problems of mothers and children and see to it that they

are distributed in a manner that assures access to appropriate health' care

for.all our citizens.

Supply Projections

in recent years a number of individuals, agencies, and expert commis- sions have attempted to assess hoW many practitioners ,are required to meet maternal and child health care needs. Unfortunately, none of these

manpoWer studies has included a thorough analysis of maternal and child

health needs, even though such an analysis is,essenti4for reaching logical decisions about the appropriate number and mix of child health care ' Rractitioeers. The Panel views with considerable skepticism the assertion -

. by some that there will be "too many" child health care providers by 1990 or 2000, given the variables involved in supply projections and the extent of unmet health care needs. It is unquestionably true that the supply of primary care physicians will increase substantially in coming decades; and

also likely that the supply of midlevel practitioners such a.§" certified nurse midwives and nurse practitioners will grow, but the effects of this mane ..rwer increase remain to be seen.

'Whdt are the projections? After years of decline, the supply of primary

care physicians is now increasing, and doing so., at a pace that outstrips population growth. In 1978, for example, there was One general pediatril cian per 9,200 persons_ By 1990, there will-be one per 6,500 population (1). Similar trends are evident for general and family practitioners,' internists, and obstetrician-gynecologists, the other principal providers of primary -- care to mothers and children.

In overall numbers, the Graduate Medical Education National Adviso- ry Committee (GMENAC) projects the following physician increases between 1978 and 1900: gener 1 pediatrics, from 23,800 to 37,750, up 59 percent; genefal family prac from 54,350" to 64,400, up 18 -percent; general internal medicine, om 48,950 to 73,800, up 51 percent; and

obstetrics-gynecology, from ,100 to-34,450, up 49 percent (1)..

. Although the 1980 GMEI AC report concluded there will be an overall physician surplu's of 70,000 by 1990 and of 145,000 by the year 2000, little of the projected excess will come in primary care. Indeed, the supply of primary care physicians will be very near to the estimated need if GMENAC projections are correct. This distinction may not always be made by policymakers, but it is an important one. The Panel therefore

recommends that any pressures to cut back support for the training of maternal and Child health professionals.be

'397
The Panel's recommendation in this regard applies not only to primary

--care physicians but also 'to nurse practitioners and similar midlevel

'professionals serving mothers and children. dMENAC estimates hat the

supply of such practitioners will double ,from approximately 20,000 to

40,000, between 1978 and 1990. r-"2

There has been great interest in whether the use of midlevel practitioners can increase physician productivity; reduce overall costs of care, and

---,i\mprove quality and appropriateness of care. None of these questions has

been easy to `answer because the impact of a midlenel practitioner depends

heavily upon how the individual is used by the institution or physician

with whom he or she is associated. The practitioner may be used to speed

the flow of patients; to provide services not previously offered, or to allow

the physician to spend more time with patients requiring his or her special

skills. In general, use of nurse practitioners tends to increase access and

quality of care, but may not significantly reduce health care costs in the

short term However, midlevel practitioners cost far less to train than

physicians and receive lower incomes. The Congressional Budget Office

has e.ancluded that midlevel practitioners can improve the cost effective-

, ness of medical practice precisely for this mason (5).

The Panel believes midlevel practitioners have an important contribution to make in the team approach to maternal and child health care

which we advocate strongly. Their 'skills in communication, in case

management, in health ,promotion, and in preventive care offer major

benefits to mothers and children. We therefore urge that training and use

of midlevel practitioners be, supported and expanded. Steps toward this

end include continuing support of training programs for such personnel,

encouragement of team training with physicians, incentives for _public

prograMS and private practitioners to hire these health professionals, and

the development of organized practice settings which allow appropriate

modes of team practice to flourish. In some States, changes in the law will

- be required' to enable midlevel practitioners to participate fully in the

delivery of primary care in organized practice settings. . The growth in numbers of midlevel practitioners, while significant,

should of be allowed to Obscure the fact that there are far more registered

i-a se RN's) in practice than there are newer professionals. Accordin

the erican Nurses' Association, there are an estimated 1,027,307. rses

fin prat ice in the United States in 1980, or approximately 472 rses,per

1C.\0,000 opulation (6). Although there are no nurneri estimates

available; a substantial 'proportion of these nurses are engaged in

providing health care to .pregnant women, mothers, and children of all),

agesin hospitals, elinIt17-h-ealth departments, comprehensive care

centers, schools, physicians' _offices, and other settings. Indeed, nurses

have traditionally- played an extremely important role in maternal and

child health. Experience has shown they are especially valuable in

providing preventive care, health prornotfon and education, assessments,

and counseling services. Because such services ale central to the health '-

care needs of mothers and children, and because nurses *remain an

iniportant part of the primary Care team, the Panel shares the concerns of

398
other groups about the current and anticipated shortage in the numbers of RN's actively employed in nursing. The availability of adequate dental manpower is also of concern. -As in

the case of physicians, the supply of dentists has been increasing rapidly in

recent years and will continue to do so in the decade ahead. In 1979, there were approximately 123,500 active dentists in the United States, a total

that is expected to grow to 156,290 by 1990 (7). While average dentist-te-population ratios are increasing fairly rapidly, a number of population groups and geographic areas remain underserved. Thus, while there are 56 dentists per 100,000 population nationwide, the

average drops to 26 per 100,000 in counties where the principal city has a population ofiless than 5,000 (8). Children in such areas, and low-income and minority children, continue to suffer from inadequate access to and

use of dental services. There is also a major problem of inadequate access

to dental auxiliaries for preventive services.

Improved Distribution

Despite the increases of recent years in the supply of primary health

care professionals serving mothers and children, rural communities and

central cities remain underserved, as do certain populatign groups such as

low-income families and minorities. The Nation haS employed three

strategies to increase the availability and accessibility of primary care for

these areas and groups: Trainin& incentives to increase the number of new physicians entering family practice Deployment of National Health Service Corps personnel to

underserved areas

Use of nurse practitioners and other midlevel practitioners in

underserved areas, with remote physician backup and supervision Each of these strategies has already met with some measure of success and

each shows continuing promise. The increase in the numbers of family practitioners,' for example, is helping to bring primary care physicians to communities that are too small to support practices of even such broadly oriented specialists as pediatricians and obstetrician - gynecologists. More than half of all recent family practice graduates have settled in towns of less than 25,000

population. In fact, nearly one-third of recent family practice graduates have located in areas that are more than 25 miles away from a medium- sized city (9). This is in contrast to pediatricians, approximately 90 percent of whom are in urban and suburban areas, according to the 1978 survey of

the American Academy of Pediatrics. Since, according to 1970 Census data, almost 20 percent of children live in rural areas, it is evident that family and general practiiioneri will remain a major source of primary

cape for children and their families in those areas (10). The deployment of National Health Service Corps (NHSC) personnel

to underserved rural and central city areas is also increasing. At present, atotal of 2,060 physicians, dentists, nurse practitioners, physician's assis-

,, 399
Obstetrics/Gynecology

100

90

1960

1970

1977

MINEIMMEM

MMIMIMIMMUM=1.

- I= =MIMI

2.5-5

Pediatrics

100

90

80

UICD

E 60

ES 50

ct

4E 40

cs, 03 a.

20

10

0

5-10 10-20 20-30 30-50 50-200

Population in thousands

>200

2.5-5 5-10 10-20 20-30 30-50 50-200

Population in thousands

>200

Percent of communities with board-certified specialists, according to

community size: United States, 1960, 1970, and 1977

3 9 s
Family Practice

100

90

80

70

60

50

40

30

20

10

0

2.5-5

Internal Medicine

100

90

-80

70

t:

1960

1970

1977

NIENIN a =Imo

KU

5-10 10-20 20-30 30-50 50-200 >200

Population in thousands

I

001P a mower

60

E

50

10

0

2.5-5 5-10 10-20 20-30 30-50 50-200

Population in thousands

>200

Percent of communities with board-certified specialists, according to

community size: United States, 1960, 1970 and 1977 (Cont.)

399
tants, and other health personnel are in the field, a majority of whom are

in comprehensive care settings. Included are Community Health Centers,

Improved Pregnancy Outcome Projects (IPO's), and Improved Child

Health Projects (ICHP's). Pregnant women, mothers, and children are

major beneficiaries of the talents of NHSC personnel employed in such

programs. However, the potential contribution to maternal and child

health care by NHSC personnel assigned to State and local health

departments is being limited by the existing requirement that States

reimburse the Federal Government for all reasonable costs, including

salary, associated with the placement of NHSC professionals.

The Panel recommends that the National Health Service Corps not only

maintain but increase its complement of health care professionals serving

mothers and children. We further urge that policy be changed to permit

placement of these professionals in all kinds of comprehensive primary

care-centers in underserved areas, including those sponsored by local and

state health departments, without reqviring reimbursement to the federal

government of costs associated with their deployment. Such placements

should serve to expand services and not to replace existing care from local

providers. As the NHSC changes from a small volunteer program to a mucn

expanded scholarship program with a service requirement, issues involved

in site designation and placement of personnel become more complex.

Support for Corps personnel is crucial, both during training and when in

practice. The Panel considers it essential that state or regional systems be

developed to provide clinical and managerial support relevant to maternal

and child health care.

A third approach to improving the supply and accessibility of primary

care providers in underserved areas involves the use of nurse practitioners

and other midlevel professionals: Various studies suggest that such

practitioners, with adequate physician backup, provide primary care

services of high quality and improve access to care for many families,

especially residents of communities with relatively few physicians. In

comprehensive care settings, in schools, in day care centers, and

elsewhere, nurse practitioners can provide valuable and cost-effective

services. The Panel feels it is important that policymakers, physicians, and

program managers continue., to expand the use of these individuals in

innovative ways.

PUBLIC HEALTH ADMINISTRATION

AND MANAGEMENT

Those who join the public health professions in the 1980's, whether to

deliver services directly or to plan and administer service programs at the

local, State, and Federal levels, will face more complex organizational,

fiscal, and political challenges than ever before. Program managers and

other key administrators and policymakers must be able to work

effectively within and- across bureaucracies, with elected officials at all

levels, and with members of the medical profession and a variety of

interest groups.

402
To a large extent, the ability of maternal and child health programs Lo

compete at all levels for scarce resources will depend upon the competence, commitment and training of a relatively small cadre of profession- als whose careers are devoted to the improvement of service systems for mothers and children. Indeed, the success of the. programs themselves may

turn upon the quality of their administration and management. A recent study of the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program, for example, found it had the greatest impact in States with a core group of committed officials working energetically to advance

the cause in the State legislature and in local communities (11). Such

officials provided a resource base and an infrastructure which were critical

to program success. Maternal and child health program managers, policymakers, and

administrators work in a variety of settings. Some demand medical

training and entail heavy direct or indirect patient care responsibilities; others do not. Eitamples of some job opportunities in maternal and child health include Crippled Children's programs, centers for handicapped

children, Improved Pregnancy Outcome projects, local and State govern- ment maternal and child health programs, faculty positions in university

schools of public health or schools of medicine, newborn services or

regional perinatal centers in hospitals, and college health or adolescent health service programs (12). It is the Panel's impression that few if any university graduate programs do an adequate job of combining medical and public health training with

each other, or with training in public policy skills. Yet it is precisely this mix of expertise that is often most needed by maternal and child health program managers and administrators. The Panel recommends that

training in selected public health disciplines be combined with training in public policy and public administration to equip students with the broad

range of skills required for successful management of complex and

interrelated service systemspublic health, social services, education, and

others.

The content of the training received by maternal and child health

professionals also needs to be updated to reflect the significance of such

factors as changes in the American family structure, the impact of environmental and behavioral factors on health, new techniques for

reducing infant mortality and morbidity and the incidence of low birth weight, the special needs of minority groups, cultural aspects of health

care provision, and the changing structure of primary care delivery

systems. In addition, efforts need to be made to encourage closer collaboration between the public health and private care sectors, and

between preventive and therapeutic health services. We must bridge the

chasm separating maternal and child health as a public health responsibility from pediatrics and obstetrics as private, medically oriented profes- sions.

Finally, the Panel believes .that university faculty involved in training

public health professicnals need to know more about programs currently in operation or planned so they can prepare students for career opportunities and service requirements that actually exist, or are likely to

in the, -near future. Equally important, public health policymakers and

403
program managers need to know what manpower is available, and with

what expertise, to staff existing and proposed programs. Thus closer

communication and collaboration are needed between the educators who

are training public health professionals and the program planners and

administrators who will ultimately employ them.

REFERENCES AND NOTES

(1) U.S. Department of Health and Human Services, Office of Graduate.Medical Education. "Report

of the Graduate Medical Education Naiional Advisory Committee." Washington: U.S. Government Printing Office, September 1980.

(2) Task Force on Pediatric Education, American Academy of Pediatrics. The Future of Pediatric

Education. Evanston, M.: American Academy of Pediatrics, 1978.

(3) Robert Wood Johnson Foundation. The General Pediatrics Academic Development Program.

Princeton, NJ.: Robert Wood Johnson Foundation, June 1978.

(4) Burnett, R. D. and L. S. Bell. "Projecting Pediatric Practice Patterns." American Academy of

Pediatrics, Committee on Manpower. Pediatrics 62: Part 2, October 1978.

(5) U.S. Congressional Budget Office: "Physician Extenders: Their Current and Future Role in

Medical Care Delivery." Background,paper. Washington D.C.: U.S. Government Printing Office,

April 1979.

(6) American Nuries' Association. Research and Policy Analysis Department, Statistics Unit. 1977-78

Inventory of Registered Nurses. Prepublication data, 1980.

(7) U.S. Public Health Service, Health Resources Administration. Supply of Manpower in Selected

Health Occupations: 1950-1990. DHHS Pub. No. (HRA) 80-35, September 1930.

(8) National Academy of Sciences, Institute of Medicine. Public Policy Options for Better Dental

Health: Report ofa Study.Washington, D.C.: National Academy of Sciences, October 1980.

(9) Budctti, P., P. MacMannus, S. Stenmark, and L. LeRoy. "Child Health Professionals. Supply,

Training and Practice." In Better Health for Our Children: A National Strategy, Vol. IV.

Washington, D.C.: U.S. Government Printing Office, 1981.

(10) For greater detail on trends in physician distribution, see Budetti, P., P. MacMannus, S. Stenmark,

and L. LeRoy. "Child Health Professionals: Supply. Training and Practice." In Better Health for

Our Children: A National Strategy, Vol. IV. Washington, D.C.: U.S. Government Printing Office,

1981; and Schwartz, W. B.. J. P. Newhouse, B. W. Bennett, and A. P. Williams. "The Changing

Geographic Distribution of Board-Certified Physicians." New England Journal of Medicine

303(18): 1032-1037, October 1980.

(11) Greenburg. G. D. and R. C. Luskin. Federal Program Implementation in Selected States: A Study

of the Implementation of the Partnership for Health Act and of the Early and Periodic Screening,

Diagnosis and Treatment Program in Michigan, Pennsylvania, and Alabama. Final report of

research grant No. HS01495 of the National Center for Health Services Research, U.S. Public

Health Service, DHEW, Washington. D.C., June 1979.

(12) Wallace, H. "The Recruittrient,'Training. and Deployment of Health Professionals for the Field of

Maternal and Child Health." Statement prepared for the Select Panel, 1980.

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CHAPTER 13

RESEARCH AND DATA NEEDS

Other chapters of this report contain numerous suggestions for needed

research. Some call attention to specific topics in need of exploration; others simply urge continued research in a broad area. Both the constancy

and the repetition of this research theme reflect a strong consensus within the Panel that the search for n knowledge and its use to ease

burdensome prc.-')lems are among theniost promising and effective means

the Nation can employ in its efforts to protect and advance the health of mothers and children.

The Panel's commitment to research is as strong as its advocacy of

improvements in the organization and financing of services, in the physical and social environment, and in the management structures that administer health services for mothers and children. These strategies are

complementary and mutually reinforcing; a wise and balanced approach

to promoting the health of mothers and children must include new

commitments and directions in all of these areas. Further, there is a growing need for the strategies to be integrated. For example, new forms of organizing the health system must include research components to

evaluate results of the changes; and fundamental research leading to new

life-saving techniques must be accompanied by adjustments in personnel training and financing systems so that the techniques are used appropri- ately. The Panel's advocacy of research is based on two major perspectives: an appreciation of the demonstrated contributions of research to improving health, and a simultaneous recognition of how much remains to be understoodabout the basic processes of life, health and disease, human

behavior, and social organization. Without question, the record of research in helping to alleviate human

illness and suffering is remarkable. Mothers and children as a_group have benefited enormously from such advances as new techniques of prenatal diagnosis, newborn screening, and neonatal therapy that can ease the burden of some genetic and congenital the development of

immunizations for a variety of viral an other infectious diseases; and

deepened understanding of reproductive biology leading to the develop- ment of contraceptives '-and improved treatment of infertility, both of which increase the possibility of voluntary fertility regulation. Mothers

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and children have also shared in benefits enjoyed by the full population

from such advances as:

The development of antibiotics and other drugs for the control or

cure of many bacterial and parasitic diseases

Improvements in surgery and anesthesiology that now permit

effective surgical treatment of a wide range of disorders such as

congenital anomalies, many forms of neoplastic growth, valvular

heart disease, and skeletal disorders

The ability to eliminate many gross nutritional deficiency diseases

The development of effective noninvasive diagnostic procedures

such as ultrasound imaging and radionuclide techniques

Research in recent decades has also increased our awareness of the

potent influence that social, behavioral, and environmental factors exert

on human healthinformation which in turn has influenced. various

institutions and practices. For example, as knowledge has grown regarding the deleterious effects of certain chemicals and compounds on health,

there has been an increase in regulatory activity to limit or eliminate the

use of many substances in agriculture, industry, and other sectors. On a

different level, our increased understanding of the importance of parentinfant bonding has been reflected in gradual in hospital maternity

practices to allow newborn infants and their parents to spend more time

together in the critical period after birth.

Our appreciation of such advances and their influence on health

promotion and disease prevention is matched, however,- by an equally

powerful recognition of how` much remain'- o be learned. The extent of

our ignorance is both sobering and constandy evident. For every example

of a useful and exciting research advance, we can cite another unknown.

We applaud the development of the vaccine that prevents polio, but

search for techniques to prevent muscular dystrophy, cystic fibrosis, and

other handicapping conditions; we recognize the enormous contribution

of certain recently developed drugs to the treatment of mental illness, but

need increased understanding of a range of remaining ptoblems such as

autism; we celebrate advances in our ability to detect increasing numbers

of inborn errors of metabolism, but realiie that we still know how to treat

only a few effectively; we know how to screen for and treat a variety of

vision and hearing defects, but still search for better ways to manage many

learning disorders. Moreover, it is not only our knowledge about various

pathological states that is inadequate; so also is our understanding of

many basic patterns and processes of normal growth and development,

which are particularly central to understanding the full range of health

and disease states in infants and children.

THE RESEARCH BASE FOR PROMOTING HEALTH

As it has been used by the Panel, the term research is defined broadly toreflect our evolving understanding of the multiple determinants of human

health and disease. Since the late 19th century, the core biomedical

disciplines such as physiology and biochemistry have been among the.

major , avenues toward discoveries that improve the health of the

406
pOpulation. Progress in this realm of science has been quite extraordinary

and the need for continued advances remains pressing. Recent decades have seen the development of an increasingly sophisti- cated understanding of the many factors related to health and disease, and of -a, -changing profile of the burden of illnessas illustrated by the prominent position occupied by such problems as accidents, mental

illness, and chronic diseaseswhich is enormously challenging to our ability to achieve effective disease prevention and treatment. Individual behavior is now recognized more widely than ever as an important determinant of health. An illustration of this point from the domain of maternal and child health is our growing recognition of the harmful effects on fetal growth and development of maternal smoking and alcohol

consumption. Thcre is also increasing appreciation of the impact on

health of changes in the physical and chemical characteristics of the human environment. The effects of these factors and changes are profound, some are probably as yet unrecognized, and most of the longterm consequences are poorly understood, particularly for children, who

are so vulnerable to their environments both biologically and emotionally. Finally, we have come to realize with new clarity that the organization of health care servicestheir cost, accessibility, continuity, and efficiency

exerts a major influence on health status. Health care services mean little

if they do not reach those who need them, or are not organized or delivered appropriately. This broadened perspective has far-reaching consequences for research. It means, among other things, that a wide array of scientific disciplines,

- pursued at both the fundamental and applied levels, must be employed in our efforts to improve .'healthbiomedical, behavioral, and social re- search, the population-based health sciences, health services research, and

related disciplines. We now recognize, for example, that it is not enough to

conduct research leading to the production of a new vaccine. We must also understand how best to organize the health system to ensure. that vaccines are distributed appropriately, and why it is that some children do not obtain them despite the proven effectiveness of immunization

measures. We not only need biomedical and clinical research to increase

our understanding of human reproduction; we also need to know more

about the psychological and social factors that influence the reproductive behavior of individuals and couples such as whether contraceptives will be used effectively. We need to continue to develop new ways to define and

detect high-risk pregnancies and on a parallel track, to learn why some

women do not begin receiving prenatal care until late in pregnancy. The complexity of many of today's health problems also suggests that multidisciplinary and interdisciplinary investigations are needed, and that multiple approaches to particular problems may well be fruitful. The Stanford Heart Disease Prevention Program, for example, has drawn on a

range of knowledge to develop a series of community-based programs designed to lower the risk factors for cardiovascular disease in selected

)opulations. The research project has required a pooling and synthesis of owledge on such widely divergent topics as cardiovascular risk -factors, thy: uses of the media in cOnveying -health messages, and techniques of group and individual counseling to modify personal health habits (I).

407
Lead poisoninga significant health risk particularly for urban, lowincome childrenprovides a similar example of the need tb pursue

multiple paths of research on a problem. Barbara Starfield, M.D. of Johns

Hopkins University recently wrote: Basic research, operating on the principle that understanding the

internal derangements will lead to reductions in the damage from

lead poisoning, is directed at elucidating the mechanisms for the

occurrence of encephalopathy, anemia and other pathological

processes. Clinical research seeks ways of treating and reversing the

manifestations of 'toxicity. As the frequency of plumbism [lead

poisoning I , particularly in certain locales, became increasingly

evident, and as basic research provided a means of detection and

effective therapy, screening tests were devised and used in the

community. When these community-based studies suggested that

hyperactivity and other behavioral deviations might be associated

dgo with lead toxicity, the loop from basic to clinical to community

o research was closed as these observationsled to laboratory studies to

confirm and explain the observations. The results of screening raised

new questions, too, as it became apparent that many children

without the .classical signs of plumbism were found to have levels of

lead as high as in th ose presenting clinically. A combination of basic,

clinical and population-based research will be required to understand the significance of these new observations and to sort out the

relative contributions of biologic and ecologic factors responsible for

them (2). The discussion could be extended at great length. The point is simply

that, given our growing understanding of the multiple influences on

health, public and private support should encourage research in all of the

health sciences, and in a manner that facilitates integrated approaches

drawing on many disciplines to further advance our ability to protect and

improve the health of mothers and children.

THE FEDERAL. ROLE IN HEALTH

SCIENCES RESEARCH

Numerous agencies within the Federal Government support health -

related. research. Within the Department of Health and Human Services--

(Di-MS), the great majority of research pertinent to maternal and child

health occurs in: The National Institutes of Health, primarily the National Institute

of Child Health and Human Development (NICHD)

The AlcohoV Drug Abuse and Mental Health Administration

(ADAMHA), which: includes the National Institute of Mental

Health (NIMH), the Natiolial Institute on Drug Abuse (NIDA), and the National Institute on Alcohol Abuse and Alcoholism

(N IAA-A) The Health Care Financing Administration (HCFA)

The Administration for Children, Youth and Families (ACYF)

408 4"
The Centers for Disease Control (CDC) The Food and Drug Administration (FDA) . The Health Services Administration (HSA), particularly the Office of Maternal and Child Health (OMCH) The Office of Health Research, Statistics and Technology, which

includes the 1\latioriaa Center for Health Services Research

(sICHSR), 'the-National Center for Health Statistics (NCHS), and

the National Center for Health Care Technology (NCHCT) . It is, of course, difficuit to define or quantify the full extent of maternal and child health-related research in DHHS as a whole or indeed in many of these individual agencies. Certain programs are clearly orien.ted to

'-reproductive and child health; for example, virtually all of the research, portfolio of NICHD and the OMCH would be so considered, as would

specific components of ADAMHAsuch as the clinical infant program

of NIMH's Mental Health Study Center, research on the fetal alcohol syndrome supported by NIAAA, and various substance abuse studies

targeted on adolescents supported by NIDAand selected research

activities within ACYF such as their child abuse and neglect studies. Similarly, CDC epidemiological surveillance systems focused on such

issues as family planning, congenital malformations, infant mortality, and

abortion are also clearly oriented to maternal and child health. In general, though, it is difficult to separate maternal and child health research from

other health research, simply because many investigations are oriented to

issues or problems that are not solely relevant to mothers and children or

to those components of the health systems that serve this group only. Many issues investigated by the National Cancer' Institute, for example, touch a wider population than women and children, and research

supported by HCFA is typically on broad issues in the organi7Ation and

financing of health services generally,--and not on health services used

exclusively by mothers and children. Thus, the Panel made no attempt to- define the full range of maternal and child health-related research within DHHS. a Other departments and agencies also conduct research that has great relevance to protecting and promoting maternal and child health. Examples include the accident prevention research of the Department of Transportation; the safety testing activities of the Consumer Product Safety Commission; the research oriented to the educational needs of handicapped children that is supported by the Department of Education; and the housing design and safety studies of the Department of Housing

and Urban Development. And in particular, the ,Department of Agriculture (USDA) sponsors a wide range of research', into matemaVand child

health issues. For example the Children's Nutrition Research°Cinter at

Baylor College of Medicine in Houston is one of USDA's six human

nutrition research centers. It conducts research into nutrient requirements during pregnancy, lactation, and early life; the standards for nutrient

intake and nutritional status assessment in infants, children, and pregnant and lactating women; and the role of diet in growth and development. Iu

addition, approximately 100 research projects are currently being con- ducted grant university system- through- USDA's_cooperative

research program. Most of these projects are concerned with nutrition

I 9 407

409
status of- infants, children, and motlids or with nutrition education

research for mothers and-dhildren:Finally, _a few maternal and child

health projects funded -through USDA's competitive grants program are

investigating nutrient requirements during gestation, infancy, childhood,

and pregnancy; and behavioral issues, such as determining the factors that

shape the pres-Chool child's food preferences.

In reviewing this broad constellation of players, the Panel supports the

pluralism of research orientations and agencies currently supported by the

Federal Government, and recommends that no one agency be charged

with administering all maternal and child health-related research. Because

each of these departments and agencies has a different mission, each will

pursue somewhat different issues. The net result, however, is the

examination of an enormous array of health issues from multiple

perspectivesan appriiach which is highly compatible with the Panel's

advocacy of support for a wide range of health sciences.

Planning and Coordination

With so many agencies involved in maternal and child health-related

research, however, research planning on a broad scale becomes essential.

Without consistent and careful review of the activities of all these

agencies, and of the relationship of current research priorities to the

evolving needs of mothers and children,. there is a substantial risk of

significant gaps on the one hand, or overlap on the other, in the total

research effort. Moreover, it is important to ensure that research agencies

with broad, multipurpose mandates such as the NCHC1r, NCHSR, and

the research component of HCFA pay adequate attention to maternal and

child health issues. In supporting the general notion of research planning,

the Panel agrees with the Institute of Medicine report "DHEW's Research

Planning Principles," which stated, "Health research planning, when well

performed ... is a. valuable mechanism for developing sound and

productive national health research policy. Well conceived and executed

planning is the Nation's best assurance that there will be optimal

allocation of resources for health research and that precious resources will

be utilized effectively" (3). Givep the fact that today there are more needs

and opportunities for productive research than there are funds and

manpower to pursue their), planning for rational allocation of resources to

areas of the greatest need, importance, and promise is imperative.

We also believe that adequate research planning will do much to

improve the predictability of research funding. Federal funding of health

research has often been erratic as a result of shifting congressional

priorities especially. Even outstanding scientists, in many areas of study,

haVe suffered from the disruptions of fluctuating funding. The trend to

shorter Federal research funding cycles for centers, programs, and

projects enhances the uncertainties and changeable character of research

support. Both increased predictability in funding and the possibility of

longer term funding would promote sustained attention to health needs.

Research, by its very nature, is a long-term process that flourishes in a

_stable environment. Scientific results, particularly in fundamental science,

410
are obtained at' unexpected times and 'Often through unanticipated

channels..Our belief in the value of research planning is strengthened by

its potential for providing funding stability for maternal and child health

research and,' indeed, all health 'research. The Panel is aware that there :ieve recently. been a number of health

research planning activities and legislative proposals that are based on this same general appreciation of the need for a more coherent and rational

'approach to research support in the public sector. For example, in 1978, Secretary Joseph A. Califano, Jr. initiated a ccamprehensive 5-year *research plan for the health-related agencies of the Departme.--nt (then, the Department of Health, Education, and Welfare); NICHD has

undertaken the development of a 5-year research plan a broad

spectrum of research issues in the maternal and field. This

plan, which will be available in early 1981, ptomiseS mcs;. useful and

should be carefully examined by appropriate bodiAls. Other

agencies within DHHS that conduct health reseIrrch are 1 engaged in planning activities of various sorts. Recently, proposed legislation has been introduced that _would establish a Presidential level health sciences planning body to recommend broad research pric,rities and funding levels.

'though aot wishing to --take a stand on.' the relative merits of such a

proposal, the .Panel recommends. that if such a group is established for

r purposes of general health sciences planning, the special research needs and opportunities _associated with maternal and child health should be given adequate attention. 'To help ensure such attention, we also

recommend that the membership of the planning group include adequate

representation from the broad area of maternal and child health. Regardless of the fate of these" large-scale planning efforts, the Panel also sees a clear need for increased communication and coordination of

maternal and child health research within DHHS specifically. Although

each ageney_conducts its own forward planning with-varying degrees of attention' to maternal and child health depending on the agency's mandate, there is no group charged with broad "oversight" of the

department's research in this area. To fill this need, the Panel recommends

-that the Assistfint Secretary for Health, with the advice and assistance of the National Commission on Maternal and Child Health _and in

consultation with the other health-research agencies of DHHS be charged by the Congress ..with specific .responsibility for assessing the broad

outlines of DHHS research related to maternal and child health in order

to: identify major saps in the department's research efforts on behalf of

this population; help coordinate research among the various agenCies; and

encourage multipurpose research- agencies within DHHS- to ,devote an

adequate portion of their resources to maternal and child health-related

research.

'In so doing, the Assistant Secretary for Health may find it useful to rely on interagency panels already in existence (such as those on adolescent research and development, early childhood research and development, nutrition, smoking and health, birth defects, population research, and

other issues); existing groups such as the National Center on Chil d...Abuse and Neglect Information Clearinghouse and similar resource centers; and'

the data bities and inventories of research activities maintained by various

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agencies. The Panel also recommends that the Assistant Secretary for

Health give specific consideration to whether a national. registry of

federally funded research in maternal. and child health should be formed

to assist Federal agencies as well as individual investigators in periodic

reviews of research progress and needs. Should such a concept be found

// useful, it would probably be reasonable to arrange for the responsibilities

of the Maternal f...Tnd Child Health Administration (MCHAproposed in

chapter 11) to encompass the development and administration of such a

registry. The Panel would also urge that the Assistant Secretary for Health and

the National Commission on Maternal and Child Health take a leadership

role in advocating that Congress appropriate adequate funds for maternal

and child health-related . research throughout the Dephiment. We have

noted with concern, for example, that funding fcyr NICHD ha., not kept

pace with the increases granted NIH as a whole, nor with -certain institutes

in particular. Similarly, we have reviewed the steady decline in the

research funds available to OMCHfrom $6 million in 1974-1975 to $4.8

million in 1980. Similar examples from other agencies of DHHS could be

cited. We find such declines distressing and short-sighted at best, given the

magnitude of need, the life-long health benefits that stem from a healthy

beginning in life, the many opportunities for prevention-oriented research

directed 'to this population, and other perspectives discussed throughout

thii report! In highlighting the need for more adequate research ftinding in

maternal and child health, the. Panel also recommends that the Assistant

Secretary for Health give specific attention to encouraging cooperation in

maternal and child health research between the public and private sectors.

Several foundations in the private sectorsuch as the Robert Wood

Johnson Foundation, the March of Dimes Birth Defects Foundation, the

W. T. Grant Foundation, and the Foundation for Child- Development

have made major contributions to the health of mothers and children

through research and demonstration programs especially. A recent

example of good public-private collaboration is the Johnson Foundation

program exploring the use of nurse practitioners in schools and ways to

:improve rural infant care (4, 5). Such collaboration makes possible

:demonstration programs that might not otherwise be conducted, und6rscoring the g&ier,a1 importance of improved communication between these

two sectors in the future.

RESEARCH PRIORI 11ES

Given the mandate and composition of the Panel, no attempt was_nade

,-'to develop, a comprehensive research agenda for improving maternal and

child health. In specific chapters of the report, some research needs in

particular areas are noted, although in all cases these are illustrative.

examples aa-i not meant to imply that the Panel has undertaken an

ekhaustive review of needed research.

The Panel has been impressed by the number of reports developed by

other groups detailing research priorities in certain areas (6-13). It has

412
become con;unon in recent years for groups to convene over several months, sometimes years, to survey the state of research in a given

discipline or with regard to a particular health problem, and develop a compendium of research topics thqi have been neglected, that seem

especially 'ripe for progress if given adequate attention, or that have become pressing for various reasons. Such reports were consulted by the Panel and, particularly if used as source material for more comprehensive

research planning, would be most helpful in identifying the many

important topics which merit sustained research of high 'quality. Short of listing specific research priorities, however, the Panel does wish

to call attention to some research areas of special importance: fundamental research in general, epidemiology, research on prevention, social and behavioral aspects of health, and health policy, evaluation research, and

research on environmental risks.

Fundamental Research

The first area of special pri2rity is fundamental research involving the

'full range of the health sciences. Fundamenl research, often without reference to, or motivation by:a specific health problem, has contributed

the knowledge needed for major health advances. For example, the Comroe-Dripps analysis (6) shows conclusively that more than 40 percent of the crucial and decisive, developments that underlie present capabilitieS in cardiovascular and pulmonary medicine and surgery derive from

untargeted, faadamental research in the biomedical sciences. We believe

that the seminal role of fundamental research would be similarly

illuminated were comparable studies made of other health care interventions.-There is widespread agreement that long-term solutions to many of our most significant health problem$ will require a more detailed

knowledge of the origins and mechanisms of disease, and the nature of human behavior and social interaction. For example, it is through. fundamental research in the biomedical .sciences that we will come to

understand what triggers the onset of labor; such knowledge would have

-far-reaching implications for reducing prematurity and its sequelae. Similarly, there is widespread agreement that fundamental research holds

the key to the ultimate prevention of many of the chronic illnesses and

handicapping conditions that so many children endure. In the behavioral area, we know little about why some children raised in the most

depressing and destructive environments mature into creative, responsible adultsknowledge which might contribute substantially to designing

intervention programs for certain high-risk groups. . We call particular attention to fundamental research in the fields of

molecular biology, molecular genetics, and immunogenetics. The implications for human health and further imprc--F ments in medicine of the

current advances in knowledge of DNA IOTA chemistry, the structure and function of human genetic material, and the many other facets of

these new .fields are monumental. Although the full benefits to be derived

from such fundamental. science advances cannot be predicted now, they

promise to be substantial. Indeed, we are probably at the- edge of an era in

1

4-4 413
which many of the most devastating congenital and inherited diseases may

be eased or prevented altogether. The Panel recommends strongly that support for fundamental research

in the health sciences be sustained and increased as opportunities emerge

and resources allow, and that. special efforts be made to ensure that

support for new or neglected areas of research not be provided at the

expense of fundamental research. The Panel recognizes that in recent

budget cycles there has been an effort to increase and stabilize support for

fundamental research in many agencies: The Panel urges that current

recognition of the essential role of fundamental science in the total

national effort to improve health not fade in future years under various

budgetary pressures, but instead become a major, enduring component of

the Nation's research planning and funding policies.

epidemiology

The Panel has noted a serious lack of population-based research,

particularly as gathered over time on a wide range of topics. This lack is

apparent for both normal and pathological states and seriously limits our

ability to understand, let alone remedy, many of the major health burdens

shouldered by children and their families. A recent compendium (7) of

needed epidemiological research related to maternal and child health, for

example, highlighted the need for: longitudinal studies of pediatric

antecedents of adult.diseases; long-term studies of the postnatal effects of

drugs on both animals and humans exposed in utero; causes of morbidity

in infants up' to the age of 12 months; socioeconomic, ethruli: and

geographic differences in morbidity and mortality in -mothers and children

under various health care delivery systems; longitudinal studies on

stability and change in personal characteristics and life patterns of

children and youth during the transition from the home environment to

school, and the movement into adolescence and through adolescence into

adulthood. Further, the Panel is concerned about how 'little is known about the

long-term impact, with and without treatment, of the most common

illnesses in childhood such as upper respiratory infections. Although it is

clear that most of these are self-limited in most children, it is becoming

increasingly apparent that some children are subject to repeated experiences with such illnesses, with unknown effects on their overall function,

growth, development, and subsequent health. The biological and social

factors responsible for this vulnerability are as yet UnknoWn.

One of the factors that limits many such important epidemiological

investigations is that longitudinal research is both difficult and expensive

to conduct. It typically requires a long-terim commitment by the

investigators, the supervising institution, and the funding source, usually

the Federal Government, which limits grant awards to 5 years. In

addition, following a cohort of children, for example, in a mobile society

over many years is both logistically difficult and expensive. Such factors

lead the Panel to recommend that congressional appropriations to

agencies that conduct longitudinal research should reflect the impoi-taiicc,

expense, and need for such investigations. Also, to the extent that it is

statistically sound, we urge that-more feasible and less costly cross414 4 9
sectional designs be used rather than c9hort studies to generate information on various ,measures over time. One example of a creative approach

to collecting longitudinal data is the study of child development in Kauai, Hawaii (14, 15). Another example is the "followback" surveys of NCHS. Followback surveys are mail surveys to collect additional information for a sample of births or deaths from individuals or providers of care named

on the vital record. Natality followback surveys were conducted from

1963 to 1969 and in 1972 (16). Currently a natality followback survey is being conducted ,using a sample of 1980 births with an over sampling of

low-birth-weight infants so that this high-risk group may be studied more extensively. Being conducted concurrently with the natality followback

survey is a fetal mortality followback survey which is collecting the same

information about a sample of fetal deaths of 28 weeks or more gestation. Data from these surveys will be available in 1982. Given the importance of such work, the Panel recommends that funding be included in the NCHS

budget to conduct these followback surveys on a periodic basis, and that consideration, be given to expanding the scope of such surveys to follow

infants into childhood and adolescence. Consideration should also be

given to following cohorts of children identified in population-based

sample surveys (such as the Health Interview Survey and HANES), such

as children with certain defined conditions.

Research on Prevention, -- Social and Behavioral Aspects of Health, and Health Policy

The Panel wishes to call attention to some of the research issues that

emerge from the five concerns outlined in chapter 1. Although many of

the strategies for easing these concerns involve changes in the organization

and financing of care, it is also apparent that significant contributions may be made by research. With regard to the first concernthat we do not give enough priority to

preventive care and health promotion generally, and do not apply widely

enough various preventive strategies known to be effectivethe Panel suggests that this relative neglect of prevention is also the case in research.

It is of course true that much of biomedical researchespecially

fundamental researchis ultimately directed toward primary prevention, as embodied, for example, in advances in clinical genetics such as

sc:-eening and prompt tratment for hereditary defects. However, prevention-oriented research, particularly in the behavioral and social sciences, is

far down the agenda of national research priorities. For illustration, the

following are some questions still to be.answered: How to design health education strategies to promote health- enhancing behaviors . in children and adolescents, and thereby

prev,mt or lessen adult illnesses which may have their antecedents

in ha bitS begun in youth How to meet the mental health needs of chronically ill and

handicapped children in order to prevent additional burdens of mental distress, particularly at such vulnerable stages as early

adolescence

41S

4 1 3
How to increase the awareness in women of reproductive age of

the hazards to the developing fetus of various drugs, chemicals,

radiation and other environmental assaults, particularly in the first

trimester of pregnancy The second of the Panel's concerns involves the continuing inequities of

health status and access to services among various groups.. Although

progress in easing this concern is not likely to rest heavily on research, the

scientific community has an important role to play in studying, for

example:The relative merits of various provider arrangements in linking

underserved groups to needed health services

Ways to remove cultural barriers and improve the acceptability

and delivery of health services to such groups as Native Americans and recent immigrants The third concern describes the emergence of psychosocial and

behavioral problems as a major component of the health needs of children

and pregnant women. The research baseln this area is in special need of

strengthening, particularly with regard to fundamental research on social

and behavioral aspects of health and disease. Our knowledge about

organic diseasehow to diagnose and treat physical problemsis not

matched by an equally rich understanding of psychosocial and behavioral

influences on health and how to harness these factors for health

promotion. The absence of a vigorous science base in this area limits

efforts to improve the health of mothers. and children in particular,

because it is precisely in this realm that so many problems exist and

through which so many solutions must be found. The research questions

that emerge from this third concern of the Panel are numerous. Many

appear in earlier chapters, particularly those which discuss risks in the

physical environment, selected issues in nutrition, and understanding the

relationship of behavior and health. Other illustrations of topics on which

research is needed include:

The so-called "critical periods"- in human development, in order

to understand if and when such periods exist, and the relationship

of parent-family-child interactions during the critical periods to

future development and health, status

Ways to intervene in certain identifiable patterns of drug use and

ini,the movement from use of some illicit drugs to others

The psychosocial. and behavioral determinants and consequences

ofalcohol use, with special attention to pregnant women in light

of 'the increased understanding of the fetal alcohol syndrome

Strategies to help both childi?er.. .ind their families adhere to

various therapeutic regimens, particularly in the presence of

handicapping conditions and chronic illness

The relationship of diet and the ingestion of specific food

substances to various patterns of behavior and development

1 le fourth concern of the Panel centers on the familythat the health

system often does not operate in a way that supports and enhances family

cohesiveness and strength, and that the demographic changes in the

American family are having significant, inadequately recognized effects

on maternal and child health especially. Although strategies to ease these

416
problems will rest heavily.on changes in values and a new way of thinking

about child health in the broader context of family funcdoning, contributions from the research community are also needed on such issues as: The effectiveness of various techniques of parent education, including child birth education The effects on child health and development of different modes of child care such as group day care and various babysitting

arrangements The efficacy of various strategies to help parents manage the

stresses of childrearing, particularly in single parent families and

families in which both parents work Various ways of actively involving parents and children in medical decisionmaking in order to enhance and strengthen parent-child

relationships The Panel's fifth concern is the excessive fragmentation among the service programs and policies in maternal and child health. Health

services research has obvious contribution to make in helping to

evaluate the effectiveness of various services in order to avoid unnecessary

complexity and duplication. Similarly, health policy research can help to bring more coherence to the plethora of publicly financed programs for mothers and children and to clarify the relationship among local, State, and Federal roles in administering various programs Examples of policy- oriented research topics pertinent to this general set of issues include: Analysis of the eligibility criteria used by the various programs related to maternal and child health to assist in making

such criteria more coherent

A comprehensive review of the priority given to issues of maternal and child health by. the health planning structures at Federal, State, and local levels to help -harness the health planning mechanism for the benefit of this population An analysis of the structure and modes of operation of the DHHS

regional offices in the area of maternal and child health to clarify

and improve their capacity to help States administer various

federally supported programs effectively and efficiegtly

Evaluation Research

One aspect of health services research to which the Panel wishes to call

special attention is evaluation research. Time and again, we have found

the need for improved information and analysis of the many programs and services providing care to mothers and children. Questions which

frequently arise are: Does the program reach the population it is designed

to serve? Does the program coordinate its activities with providers of similar services? Is the mix-of staff the most appropriate for services to be efficient and effecti'e? Is the program having a beneficial impact on the population it is serving? As a general matter, the Panel believes it is exceedingly unwise for

iublic funds to be expended through service programs without simulta- neous evaluation to measure intended effects. For example, we find an

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415
advantage of the OMCH research program is its -close ties to the service

program. The same staff that is intimately involved with the service

program helps to define research questions, stimulates research projects

on these questions, monitors the funded research, and has the capacity to

translate the research findings back to the service world. As a general rule,

the Panel recommends that programs providing or supporting maternal

and child health servicesfrom the local to the Federal levelbe required

to develop an evaluation plan, built in at the outset, to determine whether

the program is meeting its established goals and to -help in judgments

about whether the program's benefits justify the level of effort and fundsneeded to sustain it. Further, the results should be made widely

availablepublished in relevant journals, for example, and not confined

to discussions between a given program director and contract manager.

The notion of building in evaluation plans at the outset, incidentally, is

most important. For example, if home visiting programs are.-expatided as

we strongly recommend, an evaluation component should:;be-inclikted in

the program from the beginning in order to answer a varigty-Of -questions

about how best to organize such programs (see chapter 7).

For similar reasons Congress has provided that 1 percent of Public

Health Service program funds. and 0.5 percent of Social Security

Administration prOgram funds.be designated for evaluation purposes. It is

the Panel's impression, however, that these monies are not always spent

with sufficient care. Too often the program managersat the Federal as

well as State and local levels --have little leverage over the planning and

monitoring of the evaluation, and little feedback of the results. Also, these

evaluation funds, are frequently "raided" and used for purposes only

loosely connected to the evaluation of the specific program from which

the funds emanate. The Panel therefore recommends that the MCHA, the.

National Commission on Maternal and Child Health, and/or the

Congress as appropriate review the extent to which funds drawn from

maternal and child health programs are being used to generate appropriate and useful evaluation data, and take adequate steps to correct any

general misuse of evaluation funds if such is found. In making this

recommendation, we realize that a variety of procedural questions

associated with organizing and financing evaluation studies merit attention. For example, it is difficult to involve program staff in evaluation

studies without introducing bias into the results. Other problems arise in

choosing contractors, evaluation topics, and criteria for evaluation; in

increasing the comparability among evaluation studies; in the extent to

which there is adequate peer review of evaluation d'esigns and products;

and in finding the best ways to involve such agencies as NCHSR at

various stages in an evaluation study. Such questions, of course, are not

unique to evaluation of maternal and child health programs. As a general

matter the Panel would urge that these types of issues be given careful

consideration by the DHHS leadership in order to ensure that evaluation

research of high quality is a major component of all the department's

service programs. We also note a need for more evaluation researchand health services

research generallyconducted by or for State maternal and child health

programs in order to improve the quality of the services they provide. It is

418
widely recognized that one of the major reasons .there has been so little

change, so little improvement in the public _program delivery system at the

State level during- the last few decades, when remarkable changes have

occurred in many other parts of the health care system, has been the lack

of internal critical study at the State level. Such research may be

Supported by a variety of agencies, especially OMCH at the. Federal level.

Therefore, we urge that OMCH earmark an adequate portion of its total

research funds for research initiated and conducted by State maternal and

child -health programs, with the collaboration of health departments and

universities as -appropriate, and that the results ofsuch research be a part

of the program's annual report and be circulated by OMCH to all state

Maternal and Child Health agencies. In chapters 5 and 9, another aspect of evaluation research is covered

and is only cross-referenced herethe need for improved information

regarding the Fffectiveness, -efficacy, and cost-benefits of various health

services for mothers and children; the circumstances under which various

services are best provided and financed; and the effects of various

payment practices on how the health care system operates.

We caution, though, that to do such research will in some instances

require that we develop new research designs and systemsand indeed a

whole new approach to evaluation studies (both directed at clinical

problems and at service organization and delivery problems)--that

recognize the, differences between the .standards and conduct of biomedical research especially and research conducted in the more complete

environments of patient care and the health care system generally. For

example, our measures of outcome will need to be refined and reoriented.

The usual measures of mortality and disability are often inadequate for

judging the merits of many components of primary care including services

oriented to the psychosocial needs of patients, and particularly of various

health promotion activities. The measurement of low birth weight, for

example, haS proved to be more sensitive than infant mortality in

measuring the impact of various prenatal and perinatal events. Such.

examples need to be expanded. The Panel urges that special priority be .

given =to developing a range of new health outcome measures in order that

the value and impact of many of the services which are especially

important to children and pregnant womensuch as primary care

services for non-life-threatening illnesses and psychosocial interventions

may be adequately assessed.

Research on Environmental Risks

In chapter 2, the Panel discusses a range of environmental risks to

mothers and children, including accident prevention issues, safe water

needs, and the risks posed to women and children by chemicals, drugs,

and other substances in the physical environment. In that chapter we note

that the need for research is pressing in these areasnot only to

understand the full extent of environmental risks to this vulnerable

population, but also to develop effective strategies for reducing such risks.

For example, research is needed on expoSure and ingestion tolerances for

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41 7
pesticidesincluding the long-term effects of ingesting low levels of toxic

substances over timein order to calculate levels adequate to protect

infants, children, and pregnant women as well as adults of both sexes. In particular, the Panel wishes to reemphasize here that young children,

pregnant women, and the fetuses they carry are especially vulnerable to

the toxic effects of numerous substances both manmade and naturally

occurring in our water, air, food, and elsewhere. Regulatory approaches to minimizing these risks must be grounded firmly in science, which in turn

requires adequate support for high quality research on environmental risks. In drug testing, for example, we need further research to establish

safety and efficacy standards specific to children and pregnant women. With regard to food, more information is needed on the effects of food

composition, food additives, and nutritional imbalances on the developing

child. And we also need to know far more about the effects of various

workplace hazards on women, especially pregnant women, although we hasten to add that environmental risks to men are of no less importance. The effects of exposure to various substances on male fecundity, for example, is a topic of increasing concern. We note with approval that the National Institute of Occupational Safety and Health (NIOSH) has established a program of research to identify and help eliminate

reproductive effects due to workplace hazards. NIOSH is conducting both

basic and applied research to identify mutagens, teratogens, and substances associated with sterility or spontaneous abortions; and epidemiological studies are directed toward estimating expected incidence of

reproductive outcomes in the population, identifying groups of workers

with abnormal reproductive experience, and determining probable causes. More generally, the Panel recommends that,as national research agendas are developed in corning years, the risks of environmental substances to

individuals, and especially to children and pregnant women, be studied

with great care and that regulation reflect our emerging understanding of

such risks. One particularly fruitful area of investigation that 'is most

promising is the field of ecogenetics which examines the interaction of

human genetic makeup and environmental factors in relationship to health and disease. We would urge that this area of science be

strengthened.

DATA NEEDS

In the previous sections, we have noted a variety of important research

areas. Common to almost all of them, to some degree, is the need for a more adequate pool of statistiaardata on a variety of maternal and child health issues. Similarly,- in our discussions of how to improve the organization of services for this population, we often noted an absence of

important and sometimes quite basic information. Virtually all the reports

we received that addressed research needs expressed a similar concern. For example, the Presidene§ Commission 3n Mental Health found that

the Nation lacks much needed evidence on the distribution and severity of mental, emotional, and learning disorders in children and youth, especial420 4 S
ly adolescents, and argued for immediate initiation of surveys to fill this gap. Similarly, when the Panel looked into individual maternal and child

health problems and service programs, we found a pronounced need for more adequate reporting systems and for increased surveys to collect various sets of data. For example, earlier in the report we recommend the

establishment, nationally and within each State or region, of a sophisticat- ed and policy-oriented data base on accidents, injuries, and poisonings, to

aid in targeting resources and programs. However, tiefore addressing some of the most pressing needs for new

information, we wish to stress our concern that much of the massive amounts of data already in hand in many agencies is inadequately

analyzed and reported. The analytic staffs of these agencies are not large enough to. do justice to these data given the continual pressures for the generation of new information. Therefore, we recommend that new funds be allocated for increased analytic staff as appropriate in agencies that collect significant amounts of health information. We also recommend

that new funds and personnel be allocated for the support of centers for

research, analysis, and reporting using existing data bases by scholars and

analysts in selected universities and private research institutions. These

fundswhich would represent only a fraction of the funds required to

generate the data in the first placecould be awarded to the centers as

long-term funding and awarded to indiVidual scholars on a short-term

competitive basis with the stipulation that the research would involve no

new data collection but only further analysis and synthesis of existing data

sets.

Within existing systems, the Panel notes that the programs of 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 more useful if a few relatively simple changes were made in existing

.procedures. The Panel recommends that NCHS be encouraged, and

provided with the resources, if necessary, to take such steps as: Tabulating and reporting child health data, whenever possible, by

smaller, more i.2nalytically useful age categories Working with the Bureau of the Census to increase the compati-

.- bility of the categories they each use in tabulating data identifying

children and families of different ..1thnic groups

Increasing the compatibility in questions and coding procedures among the various data collection programs, thereby increasing

the ability to synthesize results from separate surveys With regard to the vital statistics system especially, the Panel noted a number of procedures and opportunities' that merit careful consideration. Because the time of greatest risk of death or trauma to a child is at or shortly after birth, it is essential that information be available to monitor

the health of children during that period.. Currently, the only continuous

sources of national data are the certificates of live birth and the certificates

of death. filed in each registration area. NCHS recommends to the States

the U.S. Standard Certificates as a model in the development of their own

State certificates; although most States have adopted the model certificates, some have not. Further, in developing their certificates, some States

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41
choose to or -it some items included in the model certificates, particularly

birth certificates. Such items which have special relevance for health

monitoring and planning include the -month of pregnancy that prenatal

care began, number of prenatal visits, marital status of the mother,

educational attainment of each parent, and date last normal menses began

(used for computation of gestation). Although completeness of reporting is

very good for most items, there are some items on the birth certificate for

which reporting is not complete, for a variety of reasons. For example, in

many States, information, about the father can be reported only if the

'mother is married. Congenital anomalies are very poorly reported on birth

certificates, although this is due in part to the fact that many anomalies

are not discovered until after the birth certificate is completed and filed

with the local registrar. When such social, demographic, and medical

information is not reported fully and accurately, it impairs the ability of

both local and national health professionals to monitor trends in maternal

and child health.

Even though Federal leaders recognize these problems in data collection at the State level, the .Federal Government can only furnish the States

with technical assistance, guidance, and coordination because vital

registration is a State-controlled activity. To ease such problems, the Panel

recommends that NCHS be' provided with increased funding and

personnel to provide technical assistance to the States to increase the

quality and comparability of vital statistics across States.

The Panel has also been impressed with the need for more complete and

sophisticated -information associated with the perinatal period. For

example, information. on the causes and correlates of infant deaths is

limited because the certificate used to report an infant death, which is the

same certificate used for all other deaths, is restricted to demographic

characteristics and cause of death. Correlates of infant death, such as birth

weight, gestational age, socioeconomic status, mother's prenatal care, and

complications of pregnancy and labor, are not reported on 'the death

certificate even though such items generally appear on the birth certificate'

and on the report of. fetal death. (Fetal death generally includes any

product of conception not born alive, such as stillbirth or miscarriage, but

this does not include induced termination. NCHS recommends data on

fetal deaths be collected for fetuses of 20 weeks or more gestation.)

Therefore, one relatively straightforward way to obtain pertinent information on perinatal and infant mortality is to link the death records of an

infant with the corresponding birth record.

Further, such information drawn from appropriate linkage of infant

birth and death certificates should be related to health system variables

such as the adequacy of a region's maternal and perinatal services, in

order to assess various aspects of the health system in the important

perinatal period. Other similar examples of data needs and opportunities

in the .perinatal period could be presented. Accordingly, the Panel

recommends that MCHA, NCHS, and other appropriate institutions

review the adequacy of, and take steps "to improve as needed, current

systems for collecting important information in the -perinatal period.

Specific attention should be given to (1) establishing a perinatal surveil-

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422
lance system in each state to aid in further defining the causes and

correlates of infant mortality and morbidity; and (2) increasing the ability of states and NCHS to generate and analyze national data based on

linked records of live births and infant deaths. The Panel believes the

improved data bases that would result from such activities would do much

to help health authorities at all leyels of government pinpoint selected

health problems in the perinatal period more accurately, and target their

resources Appropriately. In addition to these issues in the vital statistics system, the Panel also

identified an additional three sets of problems in available data related to maternal and child health. First, we noted that NCHS has in the past collected and reported considerable information about the normal growth

and development of American children. Analysis of physical: growth

patterns using data from the Health Examination Survey and the -Health

and Nutrition Examination Survey is an example. In recent years, however, resource constraints have forced the NCHS to focus more narrowly on measurements of overt disease and severe disability at the very time when pediatric practice and child health research have been placing a greater emphasis on variability in the development and

functioning of children, on incipient disorder and on psychosocial disorders that do not fit easily into the traditional framework of infectious disease and injury. Therefore, we recommend that NCHS be provided the resources to continue and expand its data collection and analysis concerning the physical, motor, intellectual, social, and emotional devel- opment 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." Second, we note a serious lack of data on handicapping conditions and

an equally significant lack of agreement among parents, teachers, and physicians regarding the identification and labeling of handicapped

children. We recommend, therefore, that NIH, NCHS and other appropri- ate groups develop functional categories to accompany diagnostic

categories for use in surveys to determine the prevalence of handicapping

conditions, and then conduct such surveys in order to produce more

accurate and complete information about the nature and extent of such

conditions in American children.

Last, through hearings, site visits, and other activities, the Panel heard much about the data reporting burdens that administrators of service programs bear. We also understand well the demands of accountability in

expending public funds; and that in some instances, there truly is a need

for more data, not less. It is a -difficult set of problems at best, and there is no easy answer. But to help ease such problems, we recommend that MCHA review and assess existing State and Federal recordkeeping and

reporting requirements for maternal and child health service programs supported by DHHS and recommend changes in such processes to the Secretary of DHHS and to program administrators, with the goal of consolidating or integrating data collection processes and forms where possible.

423
TRAINING ISSUES

A corollary to. the Panel's recommendations in the research and data

collection areas concerns the adequacy of our national research training

efforts. It is the Panel's overall impression that there is a decreasing and

inadequate investment of public funds in training scientists in various

disciplines needed to advance the health of mothers and children. We

support the efforts of the National Academy of Sciences' Committee on a

Study of National Needs for Biomedical and Behavioral Research

Personnel (17) which is examining many aspects of Federal support of

research training. A well-trained, steady supply of researchers is a

cornerstone of any national strategy to prevent disease and promote

health in the population, including mothers and children. The Panel views

the current trends toward erosion of such support in some areas with great

concern. We find it shortsighted in the extreme to skimp on training

investments, given the probable long-term' results of such actions. For

example, training funds available through the principal child health

research agency of DHHS, NICHD, have fallen from $14.8 million in

1974 to $9.8 million in 1979. Similar declines have touched other

components of NIH and DHHS as well. In addition to the decline in total

dollars, inflation has necessitated an increase in stipend amounts given to

individual trainees, further decreasing the number of trainees who can be

supported. One distres3ing manifestation of the decrease in training support is 'the

decline in the amount of clinical investigation being pursuedthat form

of research which bridges the basic sciences and patient care. For

example, largely as a result of the recommendations of the National

Diabetes Advisory Board, there has been great interest among funding

agencie'S in supporting research on diabetic mothers and their children.

However, there is an insufficient supply of clinical investigators to pursue

these topics. More generally, the NICHD notes an overall decline in

available manpower to study ways to prevent and treat high-risk

pregnancies and to manage high-risk infants. The Panel does not mean to

suggest that the decline in the amount of clinical investigation is due solely

to erosion in training support. In fact, multiple pressures in addition to

training problems are currently burdening the field of clinical investigation. These pressures, increasingly the subject of concern in science policy

bodies, include problems in research funding (especially the current

emphasis on short funding cycles and the expectaiion of quick results), in

academic career paths, and a. host of others. But the decline in public

support of clinical investigation trainees is surely a major barrier and one

the Panel urgeg be eased. - One additional aspect of the training issue should be noted. The settings

and sites in which the training of health researchers occurs has an obvious

influence on the interests and topics subsequently pursued by such

scientists. At present, it is our impression that the number of research

training opportunities is- relatively scarce in primary care and other

settings where many health promotion and disease prevention services are

delivered. In order to further stimulate research on the types of health

issues and interventions which are in the domain of primary careand

424
..which are particularly important to maternal and child healththe Panel recommends that research training opportunities be increased in arn5ulatoiy primary care settings and other settings oriented to health promotion

and disease prevention. There are, of course, other issues in research policy which, like training

support, are pertinent to maternal and chilcLhealth_but certainly_ go well beyond this population. We recognize the 'importance, for example, of such issues as research information retrieval and dissemination, and

problems in balancing applied versus fundamental _research. We have chosen, however, not to address ourselves to them in this reportnot because the topics are unimportant (indeed, in the aggregate they are of

tremendous concern)but more because their elucidation and amelioration are questions of national science policy generally and fall outside of

the Panel's expertise and mandate.

REFERENCES AND NOTES

(i) arquhar, J. W. et AL "Community Education for Cardiovascular Health." Lancet:. 1192-1195, Jiine

4, (2) Shed; B. "Patients & Populations: Necessary Links Between ,the Two Approaches to Pediatric Research?' Presented at the Symposium on Frontiers of Pediatric Research and the Shaping of Public Policy. Society for Pediatric Research, San Antonio, Tex, PAsy 1, 1980. To be published in

Pediatric Research, December 1980.

(3) National .Academy of Sciences, Institute of Medicine. DHEW's Research Planning Principles: A

Review. Washington, D.C.: National Academy of Sciences, March 1979. (4) The Robert Wood Johnson Foundation. School Health Services. Princeton, NJ.: The Roberts)ood

;Johnson Foundation, 1978. 1 (5) The Robert Wood Johnson Foundation. Rural Infant Care Program. Princeton, NJ.: The Robert

Wood Johnson Foundation, 1979. . (6) Cornroe, J. H. and R. D. Dripps. "The Top Ten Clinical Advances in Cardiovascular-Pulmonary Medicine and Surgery Between 1945 and 1975: How They Came Abatis's." Final Report, January 31, 1977. Supported in part by contract 1 -HO-1 -2327 from the National Heart, Lung and Blood

Institute, and grants from The Comnionwealth Fund and The Burroughs Wellcome Fund: (7) The National Research Council, National Academy of Sciences. Maternal and Child Health Research. Prepared for the National Institute of Child Health and Human Development Springfield, Va.: National Technical Information Service, U.S. Department of Commerce, 1976.

(8) Brent, IL L. and M. 1. Harris. Prevention of Embryonic, Fetal, and Perinatal Disease. Fogarty

International Center Series on Preventive Medicine, Vol. 3. Washington, D.C.: U.S. Government

Printing Office, DHEW Pub. No. (NIH) 76-853. 1976. (0) Department of Health and Social Security. Two Reports on lfesearith" into Services for Children and

Adolescents. "Improving the Quality of Child Health Care-R.Liport of the Working Group on

Research .Arisn. u Out of the Report of the Court Committee. "Helping Disturbed Children and Adolescents." Paport of the Joint Subgroup on Behavioural and Emotional Disturbance in Children and Adolescents. London: Her Majesty's Stationery Office, 1980. (10) The President's Commission on Mental Health. Report to-the President, Vol. I. Washington, D.C.:

U.S. Government Printing Office, 1978. (11) U.S. Department of Health, Education, and Welfare, Ad Hoc Consultants on Mental Retardation.

Federal Research Activity in Mental Retardation: A Review with Recommendations for the

Future. Washington, D.C.: U.S. Government Printing Office, 1

(12) Greep, R. 0. and M. A. Koblinsky. Frontiers in RcproducticM.4nd Fertility Control: A Review of

the Reproductive Sciences and Contraceptive Development (Sponsored by the Ford Foundation.)

Cambridge: MIT Press, 1977. (13) National Institutes of Health. "An Evaluation of Research Needs in Endocrinology and Metabolic Diseases." Prepared by an advisory committee, S. Ingbar, Chairman and Principal Investigator,

under Contract No. NOI-AM-7-2236 NIH-NIAMDD-78-2, December 1979.

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I.

(14) Werner. E. E., J. M. Bierman, and F. E. French. The Children of Kauai: A Longitudinal Study from

the Prenatal Period to Age Ten. Honolulu: The University of Hawaii Press, 1971.

(15) Werner, E. E.. and R. S. Smith. Kauai's Children Come of Age. Honolulu: The University Press of

Hawaii, 1977.

(16) Reports of The Natality Followback Surveys were published in Series 21 or.22 of Vital an Health

Statistics.

(17) National Academy of Sciences. "Personnel Needs and Training for Biomedical imsd Bikavioral

, Research: '1979 Report." Wisshington, D.C., 1980.

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9
APPENDIXES

APPENDIX A

CONTRIBUTORS

The following individuals contributed significantly t_ o the work of the Select Panel fbi the Promotion of Child Health.

Sidney Abraham

Lemm Allen

Joel Alpert

'fancy Amidei Billy Andrews William Ausbon

Norman Axnick

Robert Ball ;

Rims Barber

Patricia Barger Helen Barnes

Blair Batson

Richard Behrman

Susan Bennett

Joan Bissell

Robert Blendon

Peter Bloomsburgh Barbara Bode

Queta Bond Al Brann

T. Berry Braze lton Albert Briggs Orville Brim Jr.

Anne Brown

Ann Brunswick

Lou Buchanan

Frederick Burke

William Butler

David Calkins

Samuel Canerday F. Daniel Cantrell

Ronald Carlson

Harry Carr Peggy Charen

Zebey Chestnut Alton Cobb

Michael Cohen

Wilbur Cohen

Anne Cohn

John.Coiiger John Connelly Bonnie Connors

Leon Cooper Donald Comely

James Cox

Robert Crane

Betty McGarvie Crowley

. Irvin Cushner

Christy Cutler William Daeschner Jr.

William Daniels

Helen Darling Ezra Davidson

Karen Davis

Philip Davis Peter Dawson

Janet Dean

George Degnon Paul Densen

Robert Derzon

Adelina Diamond

Eugene Diamond Clarence Dillow III

Jeanette Dohnal

Connie Dresser

Wes Duiker

Donald Dye

John Dyer

429
Antoinette Eaton

Marian Wright Edelman Peter Edelman

Frederick Edelstein

Mary Egan Leon Eisenberg Frank Ellis

Gretchen Enquist Alain Enthoven

Lynn Etheredge

Joseph Exendine Nancy Ezzard Claire Fagin Bashi Fein

Jacob Feldman

Barbara Finberg Lawrence Finberg Marion Finkel

Charles Fisher

Michael Fishman

Louise Floyd William Foege Henry Foley Elizabeth Foote

Irene Forsman

Henry Foster, Jr. John Froines

William Fullerton

Robinson Fuiwood

Carol Galaty Charles Gershenson

Robert Gibson

Thomas Gibson

Joseph Giere Carl Gilbert

Josephine Gittler Melvin Glasser

Robert Goldenberg Leon Gordis

-David Gos lin

Stanley Graven

Jane Gray Daniel Green

Lawrence Green

Morris Green

George Greenberg Sally Greenberg Stanley Greenspan

Jeptha Greer

430

Edith Grotberg Patricia Gwaltney McGinnis Margaret Heagarty Robert Haggerty

John Hall

Sydney Ann Halpern Beatrix Hamburg David Hamburg Ruth Hanft

Irving Harris Stephanie Harris Stephan Harvey

Judson Hawk, Jr.

MaXine Hayes Grace Hazzard

Ruby Hearn

James Hendrick

Alice Hersh

-.Steven Hersh

Elizabeth Hilder

James Hill

George Holland

John Holloman

Cristy Hughes Patricia Hunt

Judith Igoe Henry Ireys

James Isbister

Robert Israel

Andrea Jackson

Howard Jacobsen

Tom Joe

Beverley Johnson Stan :ones

Margaret Jordan Marcia Kagnoff Carol Kaufman

Abraham Kauvar

Nora Keating

Joan Keemer

Henry Kempe Ruth Kempe Eileen Kennedy Asta Kenney Luella Klein

Gerald Klerrnan

Jane Knitzer

Zsolt Koppanyi Samuel .Korper
Linda Kouvillion

Norman Kretchmer

Richard Krugman Ken Landay Lauren Leroy Arthur Lesser

Leonard Lesser

Victoria Levin

Raphael Levine Charles Lewis

Jeffrey Lewis Luise Light Jane Lin-Fu

Edward Lis

Jerry Llwellyn

.Charles Lowe

Ruth Watson Lubic

Jean Luckett

Margaret Mahoney Audrey Manley Theodore Marmor

John Marshall

Joyce Marshall Edward Martin

Suzanne Martinez

Garry McDaniels Nelson McGhee Jr.

Michael McGinnis

011ie McGohee

Frances McGuire

Peg McManus Kristin McNutt

Merle McPherson

Edward Melia

Kathy Messenger Arden Miller

Willarnine Miller

Evelyn Moore Hoyt Morris Frank Morrison

John Morrison

John Mudd

Fitzhugh Mullan David Mundel

Hugo Muriel Ellen Murphy Bever lee Myers Philip Nader Jennifer Nelson

Eli Newberger Andrew Nichols

Irving Nichols Elena Nightingale

Jackie Noyes Richard Olmsted

Judith Palfrey Craig Palmer Ralph Pardee Lynn Parker Sidney Parker Frederick Parkins

Delores Parron . Warren Pearse

James Peterson

Betty Pickett George Pickett Rosita Pildes

Barry Pless Philip Porter Gloria Powell

Margaret Pratt Jack Rawsen

Shirley Reed Bernard Reilley Dorothy Rice Gerald Rice

Harold Richman

Henry Riecken Frederick Robbins . David Robinson

Sara Rosenbaum

Jeannie Rosoff

Jack Rousso

Lee Ryan Billy Sandlin Pauline Scanlon

Mitchell Sealey Bert Seidman

Irving Selikoff Iris Shannon

Paul Shanor

011ye Shirley Clyde Shorey

John Shwab

George Silver Henry Silver Ben Silverman

Robert Silverstein

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431
Dorothy Singer Mabel Smith

Paul Smith

Albert Solnit

Barbara Starfield

Gilbert Steiner

Jack Stelmach

Nancy Stone Richard Strother

Eleanor Szanton

James Talon

Carl Taube

Jules Terry. Susan Tolchin

Brahma Trager Gordon Trapnell Carl Tyler Arthur Ulene

Bernard Ungar Steven Varholy Betty Vaughn Daniel Walden

432 4 4-)3

Deborah Walker

Lisa Walker

Helen Wallace

Robert Walling Paul Wehrle

Elaine Weinstein

Judith Weitz

Susan Wellford

William Westerkam

John White

Nancy White William White

John Williams

Irwin Wolkstein

Suzanne Woolsey Sunny Yoder Michael Yogman Daniel Yohalem

Karl Yordy Edward Zigler Sandy Zimmerman Lemuel Zirulnick
APPENDIX B

WITNESSES AT PANEL

HEARINGS

I. Colorado State Capitol Building Denver, Colorado September 27, 1979

Thomas G. Allen

Executive Director

Denver Indian -Health Board, Inc

Denver, Colorado

Nancy Anderson Denver, Colorado

Steve Barnett, M.D. Aspen, Colorado

Maxine Berlinger, R.N. Chairperson Parent Child Nursing University of Colorado School of Nursing Denver, Colorado

L. Joseph Butterfield, M.D. Chairman, Department of Perinatology President, Medical Staff Children's Hospital Denver, Colorado

Elna Cain, R.N. Child Health Nursing Consultant

Colorado Department of Health Denver, Colorado

Dorothie Clark, Ed.D. Program Administrator RWJ School Health Project and EPSDT.

Colorado Department of Health Denver, Colorado

Jeffrey Dolgan, Ph.D. Director

Denver Children's Home

Denver, Colorado

Eliza t th Foote

Assistant Director for Medical

Care Regulation and Development Colorado Department of Health Denver, Colorado

433
Walter Freedman, M.D. Director, Obstetrics and

Gynecology Denver General Hospital Denver Department of- Health

and Hospitals Denver, Colorado

Joyce Gamewell, Ph.D. Colorado Migrant Council Wheat Ridge, Colorado

Daniel Gossert, M.P.H. Director of Handicapped Children's Programs Colorado Department of Health

Denver, Colorado

Mary Ann Hales Denver, Colorado

David Herr, M.D. Grand Junction, Colorado

Luis Jararnillo

Executive Director

Colorad6 Migrant Council Wheat Ridge, Colorado

Robert McCurdy, M.D. Director, Child Health Services

Colorado Health Department Denver, Colorado

Faviola Mosley Denver, Colorado

Nancy Nelson, M.D. Pediatrician, School Nurse Practitioner Project University of Colorado Health

Sciences Center

Denver, Colorado

434 43L_)

Margaret Nicholion Director of Region 8 Child Welfs.re Training Center University of Denver Graduate School of Social Work

Denver, Colorado

Ann Nickerson

Chairperson, Colorado Child Care Coalition Executive Director, Mile High Child Care Association

Denver, Colorado

Charlie Mae Pope Denver, Colorado

Marilynn Rhoads Denver, Colorado

Mary Ritter, CHA

Gi..L.ct Junction, Colorado

Richard Rivera, M.D.

Director

Pueblo Neighborhood Health Center

Pueblo, Colorado

Peggy Swedlund Sterling, Colorado

William van Doornick, Phi): Project Director, Parent-Infant Program

University of Colorado Health

Sciences Center Denver, Colorado

Rosa Zulong Denver, Colorado
11. Georgia State Capitol Atlanta, Georgia November 29, 1979

Allen Ball, M.A. Executive Director

Southern Rural Health Care

Consortium

Red Bay, Alabama

Daniel S. Blumenthal, M.D. Assistant Professor

Department of Preventive Medicine and Community Health

Emory University School of Medicine

Medical Director, W.T. Brooks Satellite Clinic

Atlanta, Georgia

Al Brann, M.D. Professor of Pediatrics

Director of Division of Neonatal

and Perinatal Medicine in the

Department of Pediatrics Emory UniVersity School of Medicine

Atlanta, Georgia

The Honorable Marcus Collins

Chairman, Ways and Means Committee

Georgia House of Representatives Atlanta, Georgia

Priscilla Dar ley Governor's Special Council on Family Planning Athens, Georgia

Louis J. Elsas, M.D. Professor of Pediatrics

Director, Division of Medical

Genetics

Emory University School of Medicine

Atlanta, Georgia

Georgia Good Marketing and Public Relations Director

Oaangeburg County Consumer Health Council

Orangeburg, South Carolina

Henry Heins, M.D. Professor of ,Obstetrics and Gynecology Department of Obstetrics and Gynecology Medical University of 'South Carolina

Charleston, South Carolina

Marion Howard, Ph.D. Director, Teen Services Program

Grady Memorial Hospital Atlanta, Georgia

Roy Lindahl, D.D.S. The American Society of Dentistry for Children Professor of Pedodontics, School of Dentistry University of North Carolina at Chapel Hill Chapel Hill, North Carolina

435
Charles Mahan, M.D. Associate Professor Department of Obstetrics and Gynecology University of Florida Gainesville, Florida

Brian McCarthy, M.D. Medital Epidemiologist Family Planning Evaluation Division Centers for Disease Control

Atlanta, Georgia

Horace Ogden Director, Bureau of Health

Education

Centers for Disease Control

Atlanta. Georgia

H. Biemann Othersen, Jr., M.D.

Chief of Pediatric Surgery Medic: il University Hospital Charleston, South Carolina

HI. Children's

Grace Baisinger Washington, D.C.

Barbara Reed

WIC Advocacy Staff The Children's Foundation

Atlanta, Georgia

Elizabeth Sharp, C.N.M., Dr.

P.H. Arherican College of NurseMidwives

Director, Nurse-Midwifery Service

Grady Memorial Hospital

Atlanta, Georgia

Ida Spruill Director

South Carolina Committee

Against Hunger Columbia, South Carolina

Elijah Washington, M.D.

Chief of Staff, Beaufort

Memorial Hospital Director of Health Care Services

Beaufort-Jasper Comprehensive Healtti Service

Ridgeland, South Carolina

Hospital National Medical Center

Washington; D.C. January 31, 1980

R. Don Blim, M.D.'

President American Academy of Pediatrics

Kansas City, Missouri

John J. Conger, Ph.D.

Director of Clinical Psychology University of Colorado Medical

Center

Denver, Colorado

436

4 2'

Irving I. Dardik, M.D.

Chairman U.S. Olympic Council on Sports

Medicine

Fort Lee, New Jersey

John B. De Hoff, M.D., M.P.H. Commissioner of Health for

Baltimore City Baltimore, Maryland

Robert A. deLemos, M.D. Special Assistant to the Surgeon General of the Air Force

San Antonio, Texas
Marian Wright Edelman President

Children's Defense Fund

Washington, D.C.

Roselyn P. Epps, 114.D., M.P.H. Acting Commissioner Commission of Public Health

Department of Human Services Washington, D.C.

Laurence Finberg, M.D. Professor and Chairman

Department of Pediatrics Albert Einstein College of Medicine

Montefiore Hospital Bronx, New York

Henry W. Foster, Jr., M.D. Meharry Medical College Nashville, Tennessee

Frederick C. Green, M.D. Associate Director

Children's Hospital National Medical Center

Professor of Child Health and

Development George Washington University School of Medicine

Washington, D.C.

Irving B. Harris President

Standard Shares, Inc. Chicago, Illinois

Robert B. Hill, Ph.D. Director of Research

National Urban League Washington, D.C.

William M. Kane, Ph.D. Executive Director

Association for the

Advancement of Health

Education

Washington, D.C.

I. Lawrence Kerr, D.D.S. Endicott, New York

Carol Hill Lowe, M.S.W. Department of Human ResourcesImproved Pregnancy Outcome Washington, D.C.

H. Belton Meyer, M.D. Good Samaritan Hospital Phoenix, Arizona

C. Arden Miller, M.D. Department of Maternal and Child Health

University of North Carolina Chapel, Hill, North Carolina

Walker B. Moore, D.D.S. Atlanta, Georgia

Barbara L. Nichols, MS., R.N. President

American Nurses Association

Kansas City, Missouri

Theodore Oldenburg, D.D.S. Chairman

Department of Pedodontics University of North Carolina School of Dentistry Chapel Hill, 'North Carolina

Thomas K. Oliver, Jr., M.D. Professor and Chairman of

Pediatrics

Children's Hospital of Pittsburgh Pittsburgh, Pennsylvania

Robert H. Parrott, M.D. Director

Children's Hospital National Medical Center

Washington, D.C.

437
Lynda Johnson Robb Chairperson President's Advisory Committee

for Women

Department of Labor Washington, D.C.

Janice Robinson

Executive Director

National Association of

Community Health Centers Washington, D.C.

George M. Ryan, Jr., M.D. Department of Obstetrics and Gynecology University of Tennessee Memphis, Tennessee

Clyde E. Shorey Vice President for Public Affairs

March of Dimes Birth Defects

Foundation

Washington, D.C.

438 4 3.4

Robert H. Sweeney President National Association of

Children's Hospitals and Related Institutions, Inc. Wilmington, .Delaware

Frances Vandivier

Philadelphia, Pennsylvania

Peter C. Van Dyck, M.D., M.P.H. Director, Bureau of Special Health Services

Utah State Department of

Health

Salt Lake City, Utah

Jerry Wiener, M.D. Chairman Department of Psychiatry George Washington University Washington, D.C.

John 0. Williams, Jr., M.D. Mt. Pleasant, Tennessee
APPENDIX C

BACKGROUND PAPERS

PREPARED FOR

THE SELECT PANEL

1. Health Protection and Promotion

Environmental Hazards to Children: Assessment and Options for Amelioration; Leon S. Robertson, Ph.D. Nutrition Education and Information; Johanna Dwyer, D.Sc. Nutritional Program Options for Maternal and Child Health: A

Summary; Barry. M. Popkin, Ph.D., John Akin, Ph.D., Mildred Kaufman, and Maurice MacDonald, Ph.D. Behavioral Aspects of Maternal and Child Health: Natural Influ- ences and Educational Intervention; Patricia Dolan Mullen, Dr.

P.H.

II. Needed Services

Background Notes on Various Approaches to Determining Health

\ Services Needed by Infants and Children, Adolescents, and Pregnant Women; Lisbeth B. Schorr and Robert J. Haggerty,

M.D.

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

C.N.M., and Irvin M. Cushner, M.D. The Health Needs of Infants and Children Under. 12; Susan S.

Aronson, M.D. Adolescents: Health Status and Needed Services; Lorraine V.

Klerman,'Dr. P.H. Health Care for Chronically Disabled Children and Their Families; Henry T. Ireys, Ph.D.

M. Access to Care

Children's Health Care: The Myth of Equal Access; Diana Dutton, Ph.D.

The Organization of Primary Health and Health-Related Preventive,

Psychosocial, and Support Services for Children and Pregnant Women; Bonnie Lefkowitz, and Dennis Andrulis, Ph,p,

439
IV. Financing and Organization of Services

Improving the Financing of Health efor Children and Pregnant

Women; Stanley B. Jones The Organization and Financing of Child Health Services Options

for Policy; Anne-Marie Foltz, Ph.D. The Special Health-Mental Health Needs of Children; Larry B.

Silver, M.D.

V. Planning and Administration

Title V --The Maternal and Child Health and Crippled Children's

, Services Section of the Social Security Act: Problems and Opportunities; Lorraine V. Klerrnan, Dr. P.H.

The Effective Integration of Maternal and Child Health Concerns

into the Generic Health Systems Planning Process; Mary Ann

Holohean

Federal and Administrative Arrangements for Maternal and Child

Health; Karl D. Yordy

-. VI. Health Manpower

Child Health Professionals: Supply, Training, and Budetti, M.D., J.D., Peggy McManus, Suzanne

Lauren LeRoy New Health Professionals in Child and Maternal

Ruby Background Paper on Nursing; Katherine B. Nuckolls, R.N., Ph.D.

C

Practice; Peter Stenmark, and

Health; Gloria

VII. Research and Information Needs

Reflections on Maternal and Child Health Programs: Reviewing the

Literature: 1975-80; George Silver, M.D., with the assistance of

Raymond Borsori National Information Needs- in Maternal and Child Health; Nicholas Zill, Ph.D., and Robin Mount

VIII. Select Panel for the Promotion of Child Health Workshop on

Organization of Health Services

Summary and Themes of Workshop; prepared by Vicki Weisfeld

Copies orthe background papers are available for sale through:

The Superintendent of Documents U.S. Government Printing Office

Washington, D.C. 20420 Stock Number 017-002-00143-7
The corresponding numbers for the other volumes of the Panel's

report are:

Volume 1, Major. Findings and Recommendations Stock Number 017-002-00140-2

Volume` II, Analysis and Recommendations for Selected Federal

Programs Stock Number 017-002-00141-I

Volume III, A Statistical Analysis Stock Number 017-002-00142-9

ves

4

3X

e

441
.

APPENDIX D

DISSENTING VIEWS

Chapter 9: Financing Health Services

. - The Assistant Secretary for Planning and Evaluation of the Department

of Health and Human Services dissents from the recommendation that if a

universal national health plan cannot be put in place relatively soon, the

Panel urges enactment of national health insurance for children and

pregnant women. While recognizing the benefits of universal coverage, the

Assistant Secretary notes that the Carter Administration has generally',

favored a policy of "neediest first' when it comes tO phasing in a national

health plan. This translates into extension of coverage to very poor adults

with no existing source of.payment whatever- for health care before any 1

extension of coverage to better-offchildren.

The Assistant Secretary for Planning and Evaluation also dissents from

the recommendation that all services defined by the Panel as "needed"

should over the long run be covered in full, without cost sharing by the

patient or family. Cost sharing for nonpoor families can be structured so

as not to interfere with needed access, and to encourage preventive and

primary care -as opposed' to high-technology inpatient care, while helping

to minimize program costs.

Chapter 11: Federal Administrative Arrangements

The Assistant Secretary for Planning and Evaluation of the Department

of Health and Human Services dissents from the Panel's recommendation

that the DHHS Secretary establish a Maternal and Child Health

Administration (MCHA) as an agency of the Public- Health Service. The

Assittant Secretary has doubts about the effectiveness of this type of

reorganization in achieving appropriate emphasis on child health goals,

and -questions especially the' separation of child health from other health

service delivery programs in the,' Public Health Service's Health Services

Administration and Bureau of Community Health Services. o
APPENDIX E

SOURCES FOR FIGURES

IN VOLUME I

Page 39

Data for infant deaths from National Center for Health Statistics. Vital Statistics of the United States, Vol. 2, for data years 1940-75. Washington, D.C.: U.S. Government Printing Office. Data for 1976 -78 from "Final Mortality Statistics, 1976, 1977, and

1978." Monthly Vital Statistics Report, Vol. 26, No. 12;.Vol. 23, No. 1; and Vol. 29, No. 6.. DHHS Pub. Nos. (PHS) 78-1120, (PHS) 79-1120, and (PHS) 80-1120. Public Health Service, Hyattsville, Md., March 30, 1978, May 1.1,-1979, and September 17, 1980.

Data for low birth weight from S. Taffel, "Factors Associated with Low

Birth Weight: United States 1976." Vital and Health Statistics, Series 21, No. 37, for data years 1950-76. National Center fOr Health

Statistics. DHEW Pub. No. (PHS) 80-1915. Public Health Service. Washington, D.C.: U.S. Government Printing Office, April 1980. Data for '1977-78 from "Final Mortality Statistics, 1977 and 1978."

Monthly Vital Statistics Report, Vol. 27, No. 11 and Vol. 29, No. 1 DHHS Pub. Nos_ (PHS) 79-1120 and (PHS) 80-1120. Public Health Service, Hyattsville, Md., February 5, 1979 and April 28, 1980.

Page 43

Division of Health Interview Statistics, National Center for Health

Statistics. Data from the Health Interview Survey.

Page 49

National\Center for Health Statistics, Mortality Division. Selected Data frbm the Division of Vital Statistics.

Page 55

U.S. Bureau of the Cengus. "U.S. Summary." Census of the Population 1940, Vol. IV, Characteristics by Age, Part I. Washington, D.C.:

U.S. Govirnment Printing Office, 1943. U.S. Bureau of the Census. "U.S. Summary." Census of the Population

1950, General Characteristics. Washington, D.C.: U.S: Government

Printing Office, 1953.

443

438
U.S. Bureau of the Census. "Population Estimates and Projections."

Current Population Report, Series P-25, Nos. 519, 704, 721, and 800.

Washington, D.C.: U.S. Government Printing Office, April 1974,

July 1977, April 1978, and April 1979,

Page 57

U.$. Bureau of the Census. "Money Income and Poverty Status of

Families and Persons in the United States: 1978:" Current Population Report, Series P-60, No. 120. Washington, D.C.: U.S. Government Printing Office, November 1979.

'Page 118

National Institute of Education. Teenage Smoking: Immediate and

Long. Term Patterns. Washington, D.C.: U.S. Government Printing

Office, November 1979.

Page 123

National Center for Health Statistics. Health United States, 1978.

DHEW Pub. No. (PHS) 78-4232. Public Health Service. Washington, D.C.: U.S. Government Printing Office, December 1978.

Di.ta from "Final Natality Statistics, 1977 and 1978." Monthly Vital

Statistics Report, Vol.f-27, No. 11 and Vol. 29, No. 1. DHHS Pub.

Nos. (PHS) 79-1120 / and (PHS) 80-1120. Public Health Service,

Hyattsville, Md., February 5, 1979 and April 28, 1980.

Page 124

National Center for Health Statistics. Health United States, 1978.

DHEW Pub. No. (PHS) 78-1232. Public Health Service. Washington, D.C.: U.S. Government Printing Office, December 1978.

Data from! "Final Natality Statistics, 1977 and 1978." Monthly Vital

Statistics Report, Vol. 27, No. 11 and Vol. 29, No. 1. DHHS Pub.

Nos. (PHS) 79-1120 and (PHS) 80-1120. Public Health Service,

Hyattsville, Md., February 5, 1979 and April 28, 1980.

Page 146

USDA Nationwide Food Consumption Survey, 48 States, Spring 1977

(prelimina7).

Page 167

Supplemental food Programs Division, Food and Nutrition Service.

Data tabulated from reporting by State programs.

Page 200

Reprinted from 4. Tores, "Organized Family Planning Service in the

United StateS,\ 1968-1976," Family Planning Perspectives 10(2y.

83-100, March-April 1978.

444 4
Page 304

Bureau of Education for the Handicapped. "Progress Toward a Free and Appropriate Education: A Report to the Congress on the Progress of P.L. 94-124, Education for All Handicapped Children's Act." DHEW Pub. No. (OE) 79-05003. U.S. Office of Education. Washington, D.C.: U.S. Government Printing Office, January 1979.

Page 325

Division of Health Interview Statistics, National Center for Health

Statistics. Data from the Health Interview Survey.

Page 351

Association of State and Territorial Health Officials. Comprehensive NPHPRS Report; Services, Expenditures and Programs of State and Territorial Health Agencies, Fiscal Year 1978. ASTHO-NPRPRS Pub. No. 47. National Public Health Program Reporting System, Silver Spring, Md., January 1980.

Page 403

Reprinted from W. B. Schwartz, J. P. Newhouse, 13. W. Bennett, and A. P. Williams, "The Changing Geographic Distribution of Board Certified Physicians," The New England Journal of Medicine

303(18): 1032-1037, October 30,-1980.

445
APPENDIX v

GLOSSARY: ABBREVIATIONS

FOR ORGANIZATIONS

AND AGENCIES

ACYF

AFDC

ADAMHA

AAFP

AAP

ACOG

AMA

ANA

BCHS

BMCHS

CDC

CHAP

C.80( CHAMPUS

CETA

CSFP

CHC

CMHC

DHHS

(D)HEW

EPSDT

ESEA

ER

EPA

EFNEP

FCC

FDA

GAO

HCFA

HMO

HSA

ICHP

446

Administration for Children, Youth and Families

Aid to Families with Dependent Children

Alcohol, Drug Abuse, and Mental Health Administration

American Academy of Family Practice

American Academy of Pediatrics Anierican College of Obstetricians and Gynecologists

Ainerican Medical Association

American Nurses' Association

Bureau of Community Health Services

Bureau of Matetnal and Child Health Services

Centers for Disease Control

Child Health Assurance Program

Children and Youth project Civilian Health and Medical Program of the Uniformed

Services

Comprehensive Employment and Training Act

Commodity Supplemental Food Program

Community Health Center Community Mental Health Center Department of'Health and Human Services

Department of Health, Education, and Welfare

Early and Periodic Screening, Diagnosis and Treatment

Title IElementary and Secondary Education Act

Emergency room

Environmental Protection Agency Expanded Food and Nutrition Education Program

Federal Communications Commission

Food, and Drug Administration U.S. General Accounting Office Health Care Financing Administration Health Maintenance Organization Health Systems Agency

Improved. Child Health project
IPO

HIS

IOM

MCH

MCHA.

MIC

NCHCT

NCHSR

NCHS

NHSC

NHTSA

N!AAA

NICZAD

NIDA

NIH

NIMH-.

NIOSH

NMA , NHC

NET

OAPP

OHDS

OTA

OPD

PSRO

PUFF

PHS

. P.L. 93-641.

P.L. 94-142

P.L. 95-626

RHC

SHCC

SHPDA

Title V

Title X

Title XIX

Title XX

USDA

WIC

Improved Pregnancy..Outcome Program

Indian Health Service

Institute of Medicine, National Academy of Sciences Maternal and child health

Maternal and Child-Health Administration

Maternity and Infant Care project National Center for Health Care Technology National Center for Health Services Research

National Center for Health Statistics

National Health Service Corps _ National Highway Traffic Safety Administration National Institute on Alcohol Abuse and Alcoholism

National Institute of Child Health and Human

Development National Instituteon Drug Abuse National Institutes of Health

National Institute of Mental Health

National Institute of Occupational Safety and Health National Medidal Association

Neighborhood Health Center Nutrition Education and Training Office of Adolescent Pregnancy Programs Office of Human Development Services Office of Technology Assessment Outpatient department Professional Standards Review Organization Proposed Use of Federal Funds Public Health Service

National Health Planning and Development Act Education for All Handicapped Children Act Health Services and Centers Amendments of 1978

Rural Health Clinic

State Health Coordinating Council State Health Planning and Deirelopment Agencies Maternal and Child Health, Social Security Act Family Planning, Public Health Service Act Medicaid, Social Security Act Social Services, Social Security Act Department of Agriculture Supplemental Food Program for Women, Infants and

Children

447
APPENDIX G

LEGISLATIVE MANDATE

Reprinted from Public Law 95-626, November 10,1978.

Establishment.

42 USC 289d

note. .

Report to Secretary and

congressional committees.

National plan.

Sze. 211. (a). Tn., Secretary of Tiealth, Education, and Welfare

(hereinafter in this section referred to as the "Secretary") shall establish within the Office of the Secretary a Select Panel for the Promotion

of Child Health (hereinafter in this section referred to.asthe "panel").

(b) (1) The panel, after reviewing all the significant medical, scientific, behavioral, and epidemiological studies concerning the promotion

of child health and the prevention of childhood diseases and concerning the efficacy apd efficiency of child health programs, shall --

'(A) formulate .specific goals with respect to the promotion of

the health status of children and expectant mothers in the United.

States; (B) develop a comprehensive national plan for achieving

these goals and 'otherwise promoting the health of children in

the United States ; and (C) transmit to the Secretary, to the Committee on Interstate

and Foreign Commerce of the House of Representatives, and to

the Committee on Human Resources of the Senate, not later than .

eighteen months after the date of the enactment of this Act, a

report detailing the comprehensive national plan. it has developed

and recommendations for such adminsitrative, legislative, and

other actions as it deems appropriate to implement this plan and

to otherwiseesprcimote the health of children in the United States.

(2) 'The, panel shall. include in its comprehensive national plan

(developed under paragraph (1) (B) ) recommendations with respect to (A). the appropriate type and quantity of preventive health

care and other health services needed by children in general and

by particular types of children at risk ; (B) the appropriate methods (and providers) for delivering

and financing the delivery ofsuch services;

.(C) the appropriate methods for coordinating and consolidating, within an agency, and between _agencies, the administration

of child health promotion programs; (D) the need for research into the delivery of such services and the promotion of child health ; (E) the appropriate methods for instructing children and

parents in methods of maintaining their health ; IF) the encouragement of innovative programs to promote

child health ; (G) the appropriate methods (including demonstration pro- grams) for applying research findings to delivery of health

services to children and otherwise to promoting the health of

children ; (H) the appropriate relationship- between child health pro-

. motion programs and health planning organizations ; (I) the appropriate support of training of health personnel. for child health promotion programs; and

4.14
(J) the appropriate technical assistance to States to imple- ment child health promotion programs. (c) (1) The panel shall be composed of the Assistant Secretary

for Health and the Assistant Secretary for Planning and Evaluation, who shall serve as ex officio members. and of fifteen other members

who shall be appointed by the Secretary not later than sixty days after the date of the enactment of this Act. Among members of the

panel appointed by the Secretary, the Secretary shall appoint not less than- three, nor more than five, individuals employed by the Department of Health, Education, and Welfare, and shall appoint representatives from the scientific. medical, dental, allied health, mental health, preventive health, public health, and education profes- sions. as well as consumers and representatives from State and local

health agencies. (2) The Secretary shall designate, at the time of appointment of members a f the panel, one member to serve as chairperson and another

to serve as vice chairperson of the panel. (3) Members of the plenel shall serve for the life of the panel and

the Secretary shall appoint individuals to fill vacancies on the panel as

they nr...4y arise. (4, Each member of the panel ( who is not a full-time officer or cl,iployee of the United States) shall be entitled to receive the daily

equivalent of the annual rate of basic pay in effect for grade GS-18 of

the General Schedule for each day (including traveltime) during which the member is engaged in the actual performance of duties vested

in the panel. All the members of the panel shall be allowed, while away

from their homes or regular places of business in the performance of service for the panel, travel expenses (including per diem in lieu of

subsistence) in the same manner as persons employed intermittently in

the Government service are allowed expenses under section 5703

of title 5, United States Code. (d) (1) Updn the request of the panel, the head of any Federal agency is authorized to detail, on a reimbursable basis, any of the personnel of such agency to the panel to assist the panel in carrying

out its functions. (2) The Secretary shall provide the panel with such administrative services and facilities as may be required to carry out its functions.

(e) (1) The panel may, for purposes of carrying out its functions, hold such hearings, sit and act at such times and places, take such

testimony, receive such evidence, and appoint such advisory committees as it may deem advisable. (2) The panel may secure directly from any department or agency of the United States information necessary to carry out its functions. Upon request of the chairperson of the panel, the head of' each such department or agency shall, to the extent permitted by law, furnish the

information and otherwise cooperate with the panel. (f) The panel shall cease to exist ninety days after the date of sub- mittal of the report described in subsection (b) (1) (C). (g) There is authorized to be appropriated $1,000,000 for the fiscal year ending September 30, 1979, to carry out this section. Sums

appropriated under this subsection shall remain available for expenditure until the date the panel ceases to exist.

ti

.1 5

Membership.

Term of office:

Compensation.

Appropriation

authorization.

a

44:9
INDEX TO RECOMMENDATIONS

Access-related services, 211-214

Accident prevention, see motor vehicle safety, home neighborhood safety

Adolescents, health behavior, 116-127

Adolescents, special health service needs, organizational implications 285-291; outreach, 287; education and counseling,. 287; privacy and

confidentiality, 287; financial barriers, 288; organizational models, 288;

in EPSDT and Title V, 290-291; multiservice settings, 290-291; services

for pregnant adolescents and teenage parents, 291

Adoption Assistane and Child Welfare Act, 311

Aid to Families with Dependent Children (AFDC), 170

Board on. Health Services Standards, need for, 214-215; functions of,

215-216; structure of, 217-218; establishment of, 218,323-324

Catastrophic (major medical) insurance, 334

CategOrical services effectively.. provided in noncomprehensive settings,.

2.68-269 . , Expanding family planning services, 269-270 Preventive dental services, for all childien, 270-271; economical and

accessible provision, 270-271.; funding, 272

Chemical and radiation hazard's, 89-95; cheinical wastes, 90, 94-95;

pesticides, 90-91, 94-95; lead, 91-92, 94-95; radiation, 92-93, 94-95;

occupational exposure, 93-95

Child abuse and neglect, 109-1-110

Children's hospitals, 280-281 Chronically ill children, mental health service needs, 205-206, 293-299

Chronically ill and handicapped children, special health service needs,

291-307; children with life-threatening or chronic diseases, 292-294;

children with physical and sensory handicap* 295-297; mentally

retarded children, 297-299; emotionally disturbed children, 300-301;

children with multiple handicaps, 302

Chronically ill and handicapped children, principles. in providing health

services, 302-307; services for families, 306; community services, 306;

public programs, 307 Community health centers, 237-241,377

Comprehensive health care for children through age 5,196-199

Congressional oversight hearings to improve coordination, 388-3&9

451
Coordination of maternal and child health programs, Federal, State, and

local roles,"344-359; State level consolidation of programs, 349-350; relationship between

Crippled Children's program and other Maternal and child health

activities, 350; assistance from DHHS, 350;

State-Federal relations, 350-355; Federal responsibilitie, 352; State

responsibilities, 352-353; federally established perform ance objectives and standards, 354-355; greater State latitude in methods of

attaining objectives, 354-355; coordinated reporting requirements

and applications, 354; interagency agreements, 355;

Title V, expansion of, 355-356; Local service coordination, 356-359; single point of service adminis;

tration, 356-357; case management, 358; community responsibility to

assign lead agency, contribute funds, improve coordination, 358-359

Crippled Children's Program; 307:350

Dental services, 207-209; preventive, 1.49,270-272

Drug safety, 95-98; special risks to pregnant women and young children,

98

Education for All Handicapped Children Act (P.L. 94-142), 307,312,350,

378; See also chapter 5, vol y fine II - ----- Emergency care, 279,281 , ' Family planning services, 199-201,270,c377

Federal administrative arrangements, ways to improve, 371-390;

Maternal and Child Health Administration, 373-382;

HCFA, relationship to PHS, 382-385;

National Commission on Maternal and Child Health, 385-387;

Office of Secretary, DHHS, coordination through, 387-388

Congressional oversight hearings, 388-389; Regional offices, improved functioning, 389-390

Fluoridation, see water supplies, fluoridation of

Food safety, 95-98; additives, 96-97; research priorities, 97; use of

alcohol, nicotine, and caffeine in pregnancy, 97-98

Food Stamp Program, 168

Foster care, children in, 311-312; research regarding health services for,

311; need for regular health assessments, 311; health care requirements

in

Adoption Assistance and Child Welfare Act, 311; support payments for

handicapped children, 311-312; payment for health services, 312;

outreach under EPSDT and P.L. 92-142,312

Genetic services, 209-211,281

Grant programs to finance personal health services, need for and

functions of, 334-336

Handguns, 85-87 Head Start, 163, 355; also see preschools and day care centers

/452

4 .4
Health behavior, critical issues; 103-127; substance use and abuse in. pregnancy, 105-106; preparation for childbirth and parenthood,

, 106-407; bonding with and nurturance of infants, 107; outreach and

eduation for high-risk families, 107-109; anticipatory guidance, 108; child abuse and neglect, -109-110; influence of television, 111-112, 126-127; special needs of adolescents,,.116,127

Health behavior ways to improve, 103-1313; In primary care settings, 128-130; educational messages, 129;' training of health professionals, 130; In preschool.and day care, 110-111; In schools, 112-116, 120-126: 130=133; school health education,

113 -1715, 120 -121, 130-133; ; health education in school health

services,. 116; parent involvement, 131; training of teachers,- 130-131; sex education 121-126,131; Federal leadership on health education, 132 -133;

ti .Role of television, 133-136; countering .adverse media pressures, 134; strengthening health promotion role-of media, 134-136; In the workplace -and community, 136-138; aetention to familyrelated needs of employees, 136; parent education and support, 137; health promoting activities for adolescents, 136

Health Care Financing Administration, 355,385

Health data, need for better,. 420-423; greater capacity To analyze and use existing information in private institutions and NCHS, 421-422;

technical assistance to States, 422; review and improvement of data

collection systems, 422-423; need for better data on development of normal children, and on handicapping conditions, 423; consolidation

and integration of data collections, 423

Health department clinics, 243-246

Health maintenance organizations, 241-243

Health planning, 359-D62 Health professionals, training of, 394-396; to reflect importance of

, psYchosocial factors, health promotion and disease prevention, 394; to

encourage .team practic, 395-396; continued support of training of . maternal and child health professionals, 403; midlevel practitioners, 398, 402; collaboration between public health and medical profession, 403

Health research personnel, need for continued support of training, 424-425; increased research training opportunities in ambulatory care

and health promotion settings, 425

Health services, minimum basic, 192-193; standards for, 192-193, 378; prenatal, delivery, and postnatal care, 194-195; comprehensive care for children through age five, 195-199; faFaily planning services, 199-201; financing of, 326,332, 335; planning for, 361-362; assuring access to, 377-378

Health services, needed by women of reproductive age, 181-185; by

infants, 185-187; by children, 187-189; by adolescents, 189-19 I

S

4 8 453
Health services requiring special attention, 201;

Mental health and psychosocial, 202-206; mental health services for

mentally retarded, 203-204; mental health services for chronically ill

and handicapped, 205-206; anticipatory guidance, 206-207;

Dental. services, 207-209 ;-

Genetic services, 209-211 Access-related services, 211-214; outreach, 211-213; transportation,

213; telephone access, 213-214; care for other children, 214

Home and neighborhood safety, 82-88; structural changes to prevent fires

and accidents, 83-84; limits on water heater temperatures, 83; fire

safety education, 83; use of asbestos, 84; household product safety,

84-85; protection from handguns, 85-87; recreation safety, 87-88;

development of Federal-State-local child accident prevention strategy,

88-89

Home visiting, increased support for, 260; as means of assuring access to

health services, 260; as routine component of maternal and child health

care, 260; financipg of, 260-262; evaluation of, 259-260,261-262

Hospital ,care, psychosocial aspects, 276-277; children's hospitalization,

277; costs of psychosocial services, 277; length of hospital stay, 277;

alternatives to hospitalization, 277; hospital role in childbirth, 277-278;

hospitalized newborns, 278; emergency care, 279

Hospital outpatient departments, 232-237,322

Immigrants, see refugees and immigrants

Indian Health Service, 313-315

Indians, see Native Americans

Indhidual and small group practice, 231-232

Institutions, childreri in, 308-311; health services for children in detention

and correctional facilities, 308-310; juveniles in adult jails, 310; health

personnel in detention and correctional facilities, 310-311

Maternal and Chifd Htalth Administration, establishment of, 373-382;

components, 373, 378; functions, 377-378

Medicaid, including EPSDT, 162-163,

313,327-329,377; See also chapter 3, volume II

Medicaid, improvements in, 327-329;

inclusion of qualified providers, 329;

continuity, 329

166, -272-275, 290-291, 307, 312,

uniform minimum benefits, 329;

inventives to improve access and

Mental health services, 202-206,263-268;

See also Chapter 6, volume II

Mental health services, integration and coordination of, 263-248; integration with general health care, 263-266; attention to psychosocial aspects,

of primary care, 264; closer relations between mental health profession-.

als and primary care providers, 264-265; coordination with other

service systerr, 266-268; increasing availability of mental health

expertise to other systems, 266

Mentally ill children, 300-301

Midlevel practitioners, support of training and use, 398,402

454
-Minimum basic health services, see Health Services, Minimum Basic

Migrants and farm workers, kiftren of, 312-313; linkage of programs and records, 313; provision for in Title V State plans, 30; interagency

cooperation, 312-313

Motor vehicle safety, 77-82; child restraint systems, 82; vehicle design, 82; speed limit, 82; helmet use, 82; liCensing of moped and minibike operators, 82; use of alcohol while driving, 82

. National Commission on Maternal and Child Health, establishment of,

385-386; duties, 386 -387; composition!, 386 -387 National health financing program, universal, 330; for mothers and

children, 330; comprehensive benefits in, 332-333 \National. Health Service Corps, 239,402

Native Americans, health services for children and mothers, 313-315;

' attention to psychosocial problems, 314; expansion of Indian Health Service programs, 314-315

Nutritional status, ways to improve, 154-171 Through information and education, 154-158; better :information on health .promoting diets, 155; Federal leadership, 155; school-based

nutrition education, 155;development of nutrition education curricula, 155-156; strengthening EFNEP and NET, 156-157; support for breast-feeding, 157; role of food industry, 158 Through the health system, 159-164; nutrition as integral part of health care, 159;, training of health it and related professionals, 160; financing of nutrition services, 161; role of Title V, 161-162; role of EPSDT, 162-163; role of Head Start, 163; role of community health

programs, 163-164 .. Through public food programs, 164-170; expansion of WIC, 165-168; strengthened joint effort between WIC and Title V and Medicaid-EPSDT, 166; expansion of Food Stamp Program, 168; support of School Lunch and Brcakfast Program, .168-169; greater health orientation for Commodity Supplemental Food Program, 170;

improve AFDC payments, 170 Through research, 170-171 Nutrition, critical issues, 142-154; normal growth and development, 142-145; high-risk groups, 145-148; obesity, 148-149; dental caries, 149; high blood pressure, 149-150; heart disease, 150; cancer, 150; diabetes, 150-151; nutrition environment, 151-154

Office of the Secretary, DHHS, coordination through, 387-388

Prenatal care, delivery, and postnatal care, 194-195,278,362

Preschools and day care centers, 110-111,251-254

Primary care, units, attributes of, 226-231; Comprehensive services, 226; Accessibility, 226;' . A Capacity for outreach, .226; Coordination of services, 227;

_ Continuity of care, 227-228; Appropriate personnel arrangements, 228; Accountability, 229;

455
Consumer participation, 229-230;

Partnership with parents, 230-231

Private health insurance, improvements in, 324-327; state of certification

of, 326

Provider arrangements, strengthening existing, 231-254;

Individual and small group practice, 231 -232; linkages with other

professional and other sources' of care, 232; demonstration of better

methods of linkage, 232;

, e Hospital outpatient departments, 232-237; establishment of primary

care centers, 234; hospital-based group practice, 235; decentralized

primary care units, 235; transmittal of information, 235; link to

community services, 235; training to provide continuing care,

235-236; financing costs of training, 236; paying for hospital-based

primary care, 236; grant's for 'comprehensive care, 236; improving

outpatient department efficiency, 236; methods of defining and

allocating costs, 236-237; Comprehensive care centers, 237-241; increased grant support, 240;

special support for C&Y' and MIC centers, 240; better coordination

with other programs, 40-241; support of nurse-practitioner clinics,

241:

Health maintenance organizations, 241-243; expansion of services to

mothers and children, 242; Federal support for enrollment of lowincome families, 242; Health department clinics, 243-246; priority to comprehensive care

activities, 246; School health services, 246-251; schools as site for delivery of health

services, 250; revision of State laws and policies, 250; reimbursement,

250; linkage with other institutions, 250; use of nurses in noncomprehensive programs, 251; . Preschool and day care centers, 251-254; equipping personnel to

arrange for needed care and provide healthy environment, 252;

implementation of health-related Federal regulations, 253-254

Psychosocial services, 202-207

Rublic.health professionals, training of, 402-404; combined with training

in public administration, 403; collaboration with curative medicine, 403

Refugees and immigrants, -health services for, 315-316; eligibility problems, 315 -316; fiscal relief to communities, 316 . Regionalization, support of, in prenatal care, genetic services, care of

accidents, serious illness and handicaps, ambulance services, child' ins'

hospitals, 281

Regional offices, improved functioning of, 389-390

Reimbursement, alternatives to prevailing methods of, 320-323; revision

'Of payment schedules, 322; lump-sum and capitation payments, 322;

incentives for training in ambulatory settings, 322

Research, needed on specific issues, 97, 101, 134-135, 170-171, 311,

415-417

Research planning, need for attention to. maternal and child health,

410-412; oversight, of allocation of DHHS-supported health research

funds, 411-412; cooperation between public and private sectors, 412

456

el
Researah priorities, 412-420; fundamental research, 413-41,4; epidemiolo- gy, 414-415; research on prevention, social and behavioral aspects of health and health policy, 415-417; evaluation research, 417-419; evaluation component in all maternal and child health programs, 418; assessment of use of evaluation funds, 418; earmarked funds for

research by State maternal and child health programs, 408; develop- ment of new health outcome measures, 419; research on environmental risks, 419-420

Research, support for integrated and interdisciplinary approache, 408; support for multiple perspectives, 410

School health services, 246-251

School Lunch and Breakfast Program, 168-169

Schools, 112-116, 120-126, 130-133, 155, 246-251, 266, 275, 350

Screening, mass, circumstances in which useful, 275; in school screening programs, 275; in EPSDT, 275;- need for periodic review of effective- ness, 275

Structuring the system to improve health services, 359-369; Role of planning, 359-362; strengthened State agency role, 360; shared responsibility with HSA's, SHPDA's, and SHCC's, 361; strengthen capacity of HSA's, SHPDA's, and National Health Planning Council in promoting. child and maternal health, 361-362;

. improved relations between State maternal and, child health agencies and State planning agencies, 362; Quality assurance, 363-364; expand rove of State maternal and child

health authorities, 363; Information systems, 364-366; need for State strategy on information

use, 364; Demonstration programs, 366-367; need for demonstrations of more efficient local service structures, 366; improved coordination, 366; services to prowte coordination, 366-367; Technical assistanmprove capacity of States, 367; Advocacy, 367-369; incentives for public service, 368; creation of maternal and child health advisory councils, 368; support of nongovernmental advocacy with private funds, 368-369

Substance abuse, 81-82, 87; in pregnancy, 97-98, 105-106

Team practre in primary care, -importance and support of, 395-396

Television, 1111112, 133-136

Teenage pregnancy, 121-126, 129, 291, 373

Title V,- Social Security Act, 161-162, 166, 290, 313-, 349-350, 354-35;, 361, 373; See also chapter 2, volume II

Toxic Substances Control Act, 94

Water supplies, fluoridation of, 98-99, 101

Water supplies, safe, 9E-101 WIC (Special Supplementui Food Program

Children), 165-168, 349-350, 378; See also Chapter 4; volume II

for Women, Infants, and

457 l

* U.S. GOVERNMENT PRINTIN.7. OFFICE : 1981 0 - 339-243,(Vol I)