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PS 012 110

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 II:

Analysis and Recommendations for Selected Federal

Programs.

Public Health Service (DHHS), Rockville, Md.

DHHS-PHS-79-55071

81

138p..: For other volumes of this report, see PS 012

109-112 and PS 012 137.

Superintuldent of Documents, U.S. Government Printing

Office, Washington, DC 20402 (Stock No.

017-002-00141-1, $4.25).

EDBS PRICE MF01/PC06 Plus Postage.

DESCRIPTORS *ChiltIzen: Disabilities: *Federal Programs: *Health

Needs: Health Services: Mental Health Programs:

*Mothers: Pregnancy; Program Descriptions: *Program

Effectiveness: Program Evaluation

IDENTIFIERS Early Periodic Screening Diagnosis and Treatment:

Education for All Handicapped Children Act: Social

Security Act Title V: Special Supplemen Food Program

Women Infants Child

ABSTRACT

This second volume of the 1981 Report of the Select

Panel for the Promotion of Child Health presents an examination of

AeIected federal programs affecting maternal and child health and

:proposes .detailed recommendations for federal legislative,

'regulatory, and other administrative improvements. Five federa.:

'programs, identified by the panel as having a particular positive

impact on maternal and child health, are reported. These programs are

Title V of tae Social Security Act: Medicaid and EPSDT (Early and

'''Pertodic Screening, Diagnosis, and Treatment): WIC (Special

*upplememtal Food Program for Women, Infants and Children) : Public

Law 94-142 (Education for all Handicapped Children Act); and

Community Mental Health Centers a d Service Systems. The analysis of

each program includes a summary of major recommendations, a brief

descriptiom cf the program (including an evaluation of its strengths

aid weaknesses), and a plan which includes specific recommendations

for program improvements. The histories, purposes and accomplishments

of; -YO, additional programs which play an important role in the

delivery of-health and health-related services are also briefly

scribed - ;A full list of federal programs directly or indirectly

ielated to maternal and child health is listed in Appendix A.

(ietbor/HP)

**4.4.**%******3r********************************************************

* Reproductic supplied by EDES are the best that can be made

from the original document.

A*********###*#####****************************************************
r. BETTER HEALTH

FOR OUR CHILDREN:

..=.3 A NATIONAL STRATEGY

U S DEPARTMENT OF HEALTH.

EDUCATION & WELFARE

NATIONAL INSTITUTE OF

EDUCATION

T415 DOCUMENT HAS BEEN REPRO- DUCED EXACTLY AS RECEIVED FROM

THE PERSON OR ORGANIZATION ORIGINATING IT POINTS OF VIEW OR OPINIONS

STATED 00 NOT NECESSARILY REPRE- SENT OFFICIAL NATIONAL INSTITUTE OF

EDUCATION POSITION OR POLICY

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 II

Analysis And Recommendations

For Selected Federal Programs

THE US. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Public Health Service

Office of the Assistant Secretary for Health

and Surgeon General

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

ORRICE or YMS SECRETARY

SELECT PANEL FOR The PROMOTION

OF CHILD HEALTH 1032 M STREET. N.W. RM. 711 wAS606H2TON. D.C. 20036

202-636-460S

December 2, 1980

Honorable Patricia R. Harris

Secretary

Department of Health and Human Services

Honorable Edward M. Kennedy

Chairman, Subcommittee on Health and Scientific Research

Senate Committee on:Labor and Human Resources

Honorable Henry A. Waxman

Chairman, Subcommittee on Health and the Environment

House Committee on Interstate and Foreign Commerce

Dear Secretary Harris, Senator Kennedy, and Congressman Waxman:

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

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

95-626 which created the Panel.

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

extraordinary amount of time, energy, andwe %tpewisdom to our

task. Our commitment has reflected how serloss:4 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

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

H onorable Edward M. 'Kennedy

Honorable Henry A. Waxman

Page Two

Volume 1 of our report presents our major findings and

recommendations.

Volume II contains specific recommendations for improving five

major Federal programs with significant impact on child health:

Title V of the Social Security Act

-- The Special Supplemental Food Program for Women, Infants

Children

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 concvete as we have been able to make them.

The goals we set out encompass an extremely broad sweep of

issues. In accordance with our congressional mandate we have

addressed and analyzed issues and policies pertainin to the

physical environment, health behavior, health services organization

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

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

environment exercise a powerful influence on health. It is true

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

high quality preschool programs and community supports for families

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

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

to productive work, our health indicators would improve

significantly. Nevertheless, we have not focused on these issues,

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

wish to help direct public attention to the extensive opportunities

to improve child health by improving health policies and programs.

iT 4
H onorable Patricia R. Harris

H onorable Edward N. Kennedy

H onorable Henry A. Waxman

Pass Three

The Panel has asked we to call your attention tr. an additional problem we faced in defining our mandate. As you know, the

legislation that established the Panel asked us to look at the

health of 'children and expectant mothers." Child health is

obviously inseparable from maternal health. The health of the

mother during pregnancy is unquestionably a major determinant of

child health. lkitiiii-we-looked beyond purely physiological factors

in child health, we found that our concerns must 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 *beds and

interventions, is in no way inconsistent with our conv.ction that

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

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

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 haw well conceived and carried out, can contribute only

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

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

programs can mean the crucial difference, especially in the lives

of the most vulnerable of our children.

We hope most profoundly that this report will contribute to

shaping public policy in ways that will help all American families

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

nation's children.

Respectfully and sincere'," yours,

fz,s,dit Gs.sia,

Lisbeth Baaberger Schorr

Chairperson

V
MEMBERS OF THE SELECT PANEL

FOR THE PROMOTION OF CHILD HEALTH

Lisbon') Bomberger Schorr, Chairperson Washington, D.C.

John C. MakcQueen, M.D., Vice Chairperson Professor of Pediatrics

Univetsity of Iowa Director, State Services for Crippled Children

Iowa City, Iowa

Jo Anne Brasel. M.D.

Professor of Pediatrics

UCLA School of Medicine

Director; Clthical Research Center Harbor-UCLA Medical Center

Los Angeles, California

Mitchell L Ginsberg, L.H.D. Dean, Columbia University School of Social Work New York, New York

Frank Hardart, Jr., M.D.

Obstetrician and Gynecologist New York, New York

Roger C. Herdman, M.D. irice 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 L Lythcott, M.D.-t- Assistant Surgeon General and Administrator Health Services Administration

Public Health Service, DHHS

Howard Newman, J.D.f

Administrator, Health Care Financing Administration, DHHS

(Mr. Newman served from June 1980 to December 1980; he replaced Leonard D. Schaeffer who served from March 1979 to June 1980.)
Katherine B. Nuckolls, Ph.D.

Professor of Nursing. School of Nursing

University of North Carolina Chapel Hill, North Carolina

John Palmer, Ph.D. st 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, 44chninistration for

Children, Youth, and Families, Office of Human Development

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

Julius B. Richmond, M.D. *t Assistant Secretary for Health and Surgeon General of the Public

Health Service, DHHS

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

Jackson, Mississippi

Jeanne C. Sinkforcl, D.D.S., Ph.D.

Dean, School of Dentistry Howard University College of Dentistry

Washington, D.C.

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

Neuropsydiianic Institute, UCLA School of Medicine

Los Angeles, California

Charlotte When

Founding Chairperson, Council on Maternal and Infant Health,

State of Georgia

"litaft*" vodUgpmeastees

friss Panel urestabers who are representatives Ofthe Department of Health and Human Services wish to

comeneed the Panel as a whole for its thorough information gathering and earelbil analysis of child bed*

peohkent They believe the Rimers mon is an emueunny eseiNd document Howevor. the speinfic

peogrammatit' and- bud continued is the report have not yet been Sonnegy

considered by dac Department or by the E011ectilive CMS= of the President. Thus, participation by

7.htinntommot atinneconeilmo in the Panel's activities cannot be oonstrued as an Administration

endomemmene orate romnsimannistions.
STAFF REPRESENTATIVES FROM THE

DEPARTMENT OF

HIEALTH AND HUMAN SERVICES

For the Assistant Secretary for Health and Surgeon General:

Susanne Stoker

Deputy Assis tant Secretary Office of Planing and Evaluation

Joel 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.N. Special Assistant to the Director, Office of Health Information and Health Promotion

For the Assistant Secretary for Manning and Evaluation:

Bonnie Lefkowitz

Director, Division of Health Services and Resources

For the Administrator, Health Care Financing Administration:

Mary Tierney, MIX

Director. Office of Child Health

For the Assistant Secretary for Human Development Services:

Linda Randolph, 1VILD. Director, Health Services Brand., Administration for Children, Youth,

and Families

Margaret A Segel Special Assistant to the Assistant Secretary for Human Development Services

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

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

Bureau of Ccanznunity Health Services

9

x
SELECT PANEL FOR THE PROMOTION OF

CHILD HEALTH

Professiocad Staff

John A. Butler, Staff Director

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

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

Jeanne G. Holzgnsfe, Consulting Policy Analyst Ruth J. Katz, Associate Program Analyst and Staff Attorney

t..urraine V. Kierman, Senior Research Associate

Jessica K. Laufer, Research Associate

Wendy Lazarus, Consulting Policy Analyst Amanda F. MacICenzie, Public Liaison

Denise J. Meny, Demcgrapher Ellen Opper-Weiner, Coordinator, Public Hearings Charlotte L. Taoucalas, Law Clerk Vicki Kalmar Weisfeld, Editor, Volumes U and III

Support Staff

Dorothy K. Cava= ugh, 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, Secretaria' l Assistant Nfichelle Miles, Secretary Gail Milner, Administrative Secretary Catherine Waller, Staff Assistant

xi 10
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SLWALNICX, 
Volume H

Analysis And Recommendations

For Selected Federal Programs

CHAPTER 1

OVERVIEW

AND INTRODUCTION

in this volume of the report the Panel presents an examination of selected Federal programs affecting maternal and child health and

proposes detailed recommendations for Federal legislative, regulatory, and other administrative improvements. These recommendations are

aimed primarily at improving State and local program operations, though

they involve action by Congress and the Federal executive agencies. The Panel had a wide range of Federal programs on which it could

choose to concentrate its efforts. In making its selection, the Panel took

into account three factors: the relevance of the program's mission to maternal and child health; the program's impact on the health of children or pregnant women; and, most important, the need and opportunity for programmatic change, either because the program is not operating at its

full potential or because modifications in it would permit major advances

toward the national health objectives the Panel had identified. Based on

these considerations, the Panel elected to focus its attention on the

following five Federal programs: Title V. Enacted in 1935, Title V of the Social Security Act is the only Federal program concerned exclusively with the health of mothers and children. It provides Federal support to States to

enhance their ability to "promote, improve, and deliver" maternal and child health care and crippled children's services, particularly

in rural and poor areas. As part of their efforts, States currently

are required to operate a "program of projects" in five areas: maternity and infant care, intensive infant care, family planning, care for children and youth, and dental care for children in lowincome areas. The State and local programs supported by Title V

have contributed significantly to improvements in maternal and

child health over the past 45 years, including the decline in infant and maternal mortality and the reduction of disability in handi- capped children. Medicaid and EPSDT. Medicaid was created in 1965 as Title XIX

of the Social Security Act to reduce financial barriers to health

care for the poor. A State-administered medical assistance program, Medicaid reimburses providers for covered services delivered to eligible beneficiaries. Since 1967, States have been

1

1 3
required to provide early and periodic screening, diagnosis, and

treatment (EPSDT) as a mandatory Medicaid service to improve

the health of low-income children through preventive health

services. Medicaid has substantially eliminated the financial

bather to the most costly health care services and its EPSDT

program has provided access to preventive health services to many

children who previously had not obtain' ed these services.

WIC. In 1972, Congress enacted the Special Supplemental Food

Program for Women, Infants and Children (WIC) as an amendment to the Child Nutrition Act of 1966. The program provides

nutritious food and nutrition education to low-income, pregnant,

postpartum, and lactating women, and to infants and children to

the age of 5 who are at special nutritional risk. In addition, WIC is

designed to serve as an adjunct to health care; in fact, it is the first

food assistance program to tie eligibility to nutritional need and to

require program sponsors to make health services available to

their participants.. Several studies suggest a positive correlation

between WIC services and improved nutritional and health status.

P L. 94-142 In 1975, Congress passed P.L. 94-142, the Education

for All Handicapped Children Act, in :response to growing

recognition by the courts of the rights of handicapped children,

and the accompanying costs of providing needed services to them.

The statute requires that "a free appropriate public education" be

made available to all handicapped children from ages 3 to 21. It

applies to all handicapped children regardless of the severity of

their disabilities and their families' ability to pay for services. A

basic requirement of the law is the provision of related services

such as physical and speech therapy, counseling services and

medical diagnostic servicesthat a handicapped child needs to

benefit from special education. In 1979, 3.9 million children

received a public education as a result of this lawtwo or three

times more than were served prior to its enactment-

. Community Mental Health Centers and Service Systems. In

response to the need for a more unified mental health system,

Congress enacted the Mental Health Systems Act in September

1980. It will become effective in FY 1982 and will replace the

Community Mental Health Centers (CMCLIC) Act of 1963, which

authorized Federal aid to States to help them construct and staff

Community Mental Health Centers. The centers provide a

dozen different categories of mental health rAtrvices, including

inpatient, outpatient, consultation and education, and specialized

services to children. CMHCs offer services to persons who

traditionally have gone without them; indeed, there has been a

substantial increase in the availability of mental health services to

the indigent and to persons living in low-income areas.

Despite its concentration on tilt= five: programs, the Panel is fully

aware of the contribution and achievements of the many other Federal

programs that provide health care services to children and pregnant

women. Among these is a group of 10 programsthat has had a particularly

2

1 4
positive impact on maternal and child health. These include., for example, the Head Start program, Title X family planning services, Community Health Centers, and the various prograr2s of the Centers for Disease Control. Unfortunately, the Panel was not able to devote the time it would have liked to scrutinize these programs more closely and to provide the

type of indepth analysis it has for the five programs in chapters 2 through

6 of this volume. Chapter 7 presents a summary of these programs which, in concert with the five programs discussed in the preceding chapters, constitute the core of present Federal commitment to the health care of children and pregnant women. In addition to the programs that are discussed in detail in chapters 2

through 6 and tLose reviewed briefly in chapter 7, there are numerous other Federal programs that are less directly related to maternal and child health, but are important sources of essential health care or related

.1=Iric...s. Such programs include the Civilian Health and Medical Program

of the Uniform Services (CHAMPUS), the National Health Service Corps, the Food Stamp program, and the Alcohol and Drug Abuse Education program. Appendix A contains a full listing of Federal programs directly or indirectly related to maternal and child health.

SOME GENERAL FINDINGS

To enhance its understanding of the achievements and deficiencies of Federal maternal and child health programs, the Panel sought the views and opinions of State and local profgam. administrators, congressional and Federal agency staff members, and academicians. In addition, the Panel reviewed numerous studies of the programs and asked specifically

about program performance at public hearings in three cities (Denver, Atlanta, and Washington, D.C.) and site visits in two more (Jackson, Miss. and Chicago). Through this process the Panel gained insight not only into the programs themselves, but also into the broader policy issues

in maternal and child health that must be confronted in the coming years. While these issues are touched upon in the chapters that follow, they are discussed in greater detail in volume I of this report. Throughout its I8-month study, the Panel found widespread consensus about the interventions lately to be effective, the programs that work well and the obstacles that keep them from working better, the ways to get the most out of the money the Nation is already spending, and about

improvements that could be achieved for relatively little more. It also

found that a large proportion of the most troublesome child health

problems can be prevented or ameliorated at reasonable and predictable

cost by applying knowledge that is already at hand. The Panel studied the problem of duplication of services and conclud- ed, as many critics have, that the number and variety of programs create

some duplication of services in a particular . area, as well as some

duplication of services to individuals. It found, however, thzt the duplication problem is less the case of an individual getting the, same

service two or three times, than it is too n any programs operating

3

15
independently of each other, serving only a fragment of the population

needing help or offering only limited assistance to people who need a great

deal of it.

A far more basic problem in the Panel's view is that despite these

numerous programs, a large number of infants, children, adolescents, and

pregnant women still do not receive essential health care services_ This

point is best illustrated by the number of pregnant womenfully 25

percent of the totalwho receive late, little, or no prenatal care at all. And

this percentage is significantly higher among poor, black, adolescent, and

unmarried women, those in rural areas, and those over 35the very

groups most likely to be at high risk of a poor pregnancy outcome.

Similarly, a substantial percentage of handicapped children do not

ak.i.ually receive needed services even though an array of Federal programs

such as P.L. 94-142, Developmental Disabilities, and the Supplemental

Security Income Disabled Children's program are designed to help them.

Another critical concern is that many children and pregnant women

receive services that either are of poor quality or are not part of continuing

health care. For example, a substantial percentage of the children eligible

for the EPSDT program have not actually been screened, or have not

received screenings that are complete. Moreover, many of the medical

problems identified through the screenings are not treated. The lack of

continuing care is a particularly acute problem for children from lowincome families. More than 18 percent of all children from such families

lack a regular source of care compared with less than 6 percent of children

from families with an annual income of $15,000 or more. As a result,

children from poor families often receive care from sources that are only

organized to provide care that is episodic and unnecessarily costly.

The fact that public programs have not been more successful in

overcoming these problems is the result of numerous factors, many of

which are unintended consequences of Federal legislation, regulation, and

administro.tive policies. The most important of these factors are inadequate access to health care services, the absence of basic program

information, lack of coordination among programs providing different

levels of care and different types of services, and insufficient resources to

support even essential maternal and child health services- Each of these

factors is reviewed briefly below.

Inadequate Access to Care

To a large extent, inadequate access to care is caused by gaps in

eligibility for health financing or service programs. There is a widespread

but erroneous assumption, for example, that Medicaid has guaranteed the

poor access to health care. Actually, Medicaid covers only about threequarters of the poor, excluding some 7 million children in families that are

poor according to Federal criteria. Medicaid coverage varies from State to

State, including almost all poor and near-poor individuals in a few States,

but only a fraction of them in others. In some States Medicaid covers only

about 10 percent of all poor children and even then pays only about 10

percent of their medical expenses_

4

1 6
Even where eligibility is not an issue, children often do not receive the

care they need because essential services are not available. The famil5: of

handicapped children falling within the purview of P.L 94-142 know all

too well the depth of this problem. Although these children are eligible for certain health, mental health, and medical evaluation services that are necessary to benefit from an individualized special education program, these services may not be available either from an existing source of care, such as a Title V Crippled Children's program, a Community Mental Health Center, or a local health department. The appropriate program

may not exist in the area or it simply may not provide the needed service. Access to services is also impeded by fragmentation among programs and policies. This fragmentation occurs among programs within the health

care system and between the health care system and equally complex delivery systems in the related fields of social welfare, education, corrections, and rehabilitation. Evidence of fragmentation and the problems it causes for providers as well as consumers of services was encountered frequently in the Panel's hearings, site visits, and consultations. Consumers participating in both the WIC and EPSDT programs, for example, described the amount of work and school time that is lost because they must appear at clinics several times order to receive the

WIC nutritional assessment, an EPSDT screening, and routine obstetric and pediatric care, and appear on other days for treatment services. Service providers commented on the wasted time and resources. The problem of fragmentation has become even more apparent with the advent of PL. 94-142 in the schools, and with other programs such as the Developmental Disabilities program and the Supplemental Security

Income Disabled Children's program. Under each of these programs, a designated agency is required to determine a child's needs and then design

and carry out an individualized plan for meeting them. Although parental participation in the delivery of health and health-related services to

children with special problems is critically important, too often families must sustain the entire burden of locating and coordinating the necessary

services. This situation can cause a tremendous drain on a family's

financial resources. There is, therefore, a pressing need to designate an

individual in the responsible agency to manage each child's case, by

making the appropriate contacts, =pia the problems and services

needed, and assisting the family in obtaining appropriate services.

Other problems exist even where needed services are readily available. Sometimes, for instance, children are subject to different individual plans at once. This results in not only conflicts and confusion for the child and

his or her family, but also an unnecessary waste of limited personnel and

financial resources for those providing services.

Absence of Adequate Program Information

A second factor concerns the failure to develop data collection systems

that would permit program accountability to Congress and to the general public, and facilitate the identification of necessary program improve5

17
meats. Data for these purposes have become even more important as

financial resources for health care services have begun to dwindle. Indeed,

continued or increased funding now requires documentation that the

program has provided services and that the services are effective. Yet

several of the Federal programs serving children and pregnant women

have been deficient in their collection of this information. Community

Mental Health Centers, for example, cannot identify the services they

provide to children and the number or ages of the children they serve, and

EPSDT only recently revised its reporting system to yield basic information about populations served and services rendered.

Insufficient data is a particularly serious problem for the Title V

program. The problem can be traced in part to the 1976 decision to

disband the Federal maternal and child health and crippled children's

reporting systems and to rely instead upon the National Public Health

Program Reporting System (NPHPRS) and the Bureau of Community

Health Services Common Reporting Requirements (BCRR). Neither of

these systems proviees information necessary for adequately monitoring State Title V agencies. Reduction in Federal expectations for data

collection on maternal and child health services 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 inadequate State data collection of Title V services is

simply lack of money. Reporting problems can be compounded when various programs

develop parallel and incompatible data bases to meet Federal accountability criteria. Conflicting definitions, classifications, and reporting categories created by different programs can make it almost impossible to

retrieve relevant information and transfer the information needed to

coordinate services among programs

Lack of Coordination

The third factor leading to problems in the delivery of maternal and

child health services is the general lack of structural coordination among

programs, and the fact that no single agency at any level of government

has responsibility and authority for planning and assuring the availability

of the various health and related services needed by mothers and children.

Programs created at the Federal level operate in isolated fashion, each

with its own statutory requirements and regulatory policies, its own

administra ave structure, its own service delivery system, and even its own

provider and staff constituency. Without major efforts to establish

consistent and coordinated policies, each program tends to operate in a

manner unrelated to the others.

It is on the local level that cooperative efforts among various agencies

and programs can best be translated into effective action, linking together

the resources of the health care delivery system with those of equally

complex service systems in social services, education, corrections, and

rehabilitation to meet the needs of mothers and children. In some

communities, independent initiatives have had tremendous success. These

6
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implementing maternal and child health programs and policies as well as

others. Effects on Federal programs also are significant when State and

local tax support of programs is reduced. In the aggregate, the moneys

which are used to support basic health services for children and pregnant

women arc not increasing at a rate sufficient to keep up with inflation and

maintain even those levels of effort prevalent in the 1970's.

SUMMARY OF PROGRAM RECOMMENDATIONS

In reviewing the serious problems of limited financing, splintered

oversight, and disincentives to program coordination which characterize

the present system of Federal health care programs for mothers and

children, the Panel considered the option of recommending that these

programs be folded into a single piece of legislation, or repackaged so that

funds could be awarded to the States as a block grant to be administered

any way that made most sense given State and local realities. The

simplicity of this idea was tempting, but on careful examination it was

rejected by the Panel for two principal reasons. First, the Panel believes that the Federal programs discussed in this

volume -present an identifiable and potentially cohesive core of Federal

effort to improve the health of children and pregnant women. In the

aggregate, they are not so numerous as to defy coordination and sound

management, and each has a legisaive intent that the Panel believes is

fundamentally sound. Each also has modes of implementation that can

reinforce the effects of other major programs. The Panel believes that the

limited number of programs discussed in this volume, if they come to be

treated by Federal, State, and local policymakers as an interactive system

for purposes of planning and implementation, contain all of the necessary

2 !tributes for attaining major objectives for maternal and child health at

minimal feasible cost_ Second, and perhaps more important, are the potential dangers

inherent in a general block grant approach to health program financing.

As already noted, there are many inequities and inconsistencies in the

existing system of health services to children and pregnant women. It is

hIcely that a shift to extensive State control of health program expenditures, without clear Federal policy objectives and program standards,

would permit this situation to persist and, in fact, intensify. What is

needed, instead, in order to improve the health care system for children

and pregnant women, is the establishment of national policy objectives,

with Federal agencies working cooperatively to develop uniform service

standards and individually to identify and monitor State program

performance, while still retaining authority to fund local programs directly

where States are not performing satisfactorily. The States, for their part,

should retain substantial flexibility regarding the means by which national

objectives are pursued. What the Panel envisions, then, is the development of a iikore cohesive

maternal and child health care system in which each of the core programs

makes its own unique contribution to the health and well-being of the

Nation's mothers and children. The Panel's recommendations for the five

8

20
programs it analyzed in depth are intended to achieve this purpose and, at

the same time, to maximize the effectiveness of existing resources. These

recommendations are characterized by a number of common themes, which include (1) clarifying and strengthening the complementary and mutually reinforcing responsibilities of these programs; (2) requiring

essential components of local service programs; (3) targeting resources on populations in need; and (4) developing mecha-nisms for program

oversight and accountability. These themes appear in the specific

recommendations in the following chapters, and are summarized more generally here.

Complementary Program Functions

A primary strategy proposed by the Panel is to clarify the functional responsibilities among Federal programs and to assign to each program

the resources and authority to carry out its responsibilities effectively. In

each case, the Panel urges responsibilities that build on the program's historic and current strengths. At the same time, these functions are

structured to be mutually reinforcing and aimed at common goals. The Panel's recommendations for the Title V program are at the heart of its program improvement strategy. The Panel believes the Title V

program should be given the lead role in developing resources and

assuring quality for maternal and child health services. Working to

achieve broad, federally established policy objectives, State agencies administering Title V should prepare a comprehensive plan to improve the quality and availability of health care for children and pregnant women

statewide. This means assessing existing resources to determine their ability to meet maternal and child health service needs, identifying gaps in

service quality and availability, and developing strategies to remedy

current inadequacies. The Panel recommends that this Title V planning process be coordinated closely with the generic health planning required

by the National Health Planning and Resources Development Act. Beyond these planning functions, the Panel urges that State agencies administering Title V funds undertake a variety of new or expanded

activities aimed at instituting changes required by the plan. These

activities include coordination, technical assistance, quality assurance, and advocacy, as well as direct funding of local and regional service programs where they are not otherwise available. Just as the Title V

planning effort would not be limited to Title V-supported prcigrams, activities to promote the quality and accessibility of services should be broadly focused to include all actual and potential maternal and child

health resources.

In quality assurance, for example, the Federal Title V agency would be

responsible for establishing, in collaboration with appropriate professional and voluntary associations, minimum national standards for personnel, facilities, and delivery of care, and for setting minimum expectations for monitoring by the State agencies. State agencies, then, would further define quality standards and monitoring systems, based upon local conditions and needs, and would monitor the quality of services provided

9

21
to mothers and children by all publicly supported agencies. Any dual

standard of care based on different sources of funding would be

eliminated_ The Panel believes that implementation of its recommendations for

Title V would have a substantial multiplier effect for the many other

Federal programs concerned with maternal and child health_ If State

agencies administering Title V are assigned responsibility for developing

and upgrading maternal and child health resources, educational agencies

would be better able to arrange for handicapped children to receive the

health services required as educationally "related services" under P.L.

94-142, and WIC sponsors would be better able to make available

obstetric and pediatric services intended to be delivered to WIC

participants in conjunction with food supplements. And placing primary

responsibility for standard setting with the Title V program would mean

that the State agencies administering WIC and those administering P.L.

94-142 would be able to rely on the expertise of the State agencies

administrating Title V for uniform standards of care. The same applies for

the State Medicaid agency. Once common standards were adopted,

Medicaid reimbursement of covered services provided under the auspices

of these various programs wouldbe facilitated.

The Panel believes that Medicaid should continue to serve as the major

finance= and purchaser ofservices for health care to low-income children

and pregnant women until a broader national financing program is

established_ This requires that Medicaid be expanded to extend eligibility

to all childrez_ and pregnant women who meet Federal poverty criteria,

and to provide them a uniform national benefit package. In addition,

Medicaid legislation should be amended to include a stronger commontnt

of Federal matching funds and to authorize better mechanisms for

encouraging participation by appropriate providers, especiaay those

off ering continuing care. Strengthening Medicaid should produce more

flexibility in Title V, thus reducing pressure to pay for needed services

among low-income populations. Title V programs could reinvest these

funds for such purposes as better primary care, improved coordination

services for the chronically ill and handicapped, stronger support for

WIC-related nutrition assessments, and other means of enhancing the

joint effects of the core programsin achieving national objectives.

Finally, the Panel recommends that WIC, Head Start, Title XX Day

Care, and the P.L. 94-142 program all play an increased and coordinated

role in early identification and case management of children with health

problems. Although the primary purpose of each program is not the

provision of direct health care, each is in a unique position to recognize

health problems in children or pregnant women, refer them for care, and

provide appropriate case management services. The WIC program, for

example, which attracts large numbers of women and children who might

otherwise not seek health care, is mandated to provide a nutrition and

health assessment, and to make health care services available to its

participants. To assure that this is achieved, the Panel makes specific

recommendations to promote coordination between WIC providers and

sources of continuing health care.

10
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deserve. The Pacers recommendations are intended to alter this by

promoting various types of prevention and health promotion measures

through the programs discussed in chapters 2 through 6. The Panel

recommends, for instance, that Medicaid provide complete coverage for

essential preventive services required by all children and pregnant women. Also, particular attention is given to activities that focus on primary

prevention and early intervention by community mental health service

provide-7. (3) Adequate mechanisms of case management to assure foliowup

and continuity of care. Case management is based on the assumption that

for some service needs it is more efficient or feasible to help people take

advantage of existing community resources than to restructure agency

functions. Case management has proven very successful, for example, in

helping parents of some Head Start children. A GAO reports documents

the cost-effectiveness of the Child and Family Resource Center Program,

which offers comprehensive family-oriented consultation in addition to

traditional Head Start services.

In general, case management is a relatively inexpensive service that can

maximize the impact of more expensive services. The Panel believes,

however, that to be effective, case management activities must be designed

so that a single lead agency or individual at the point of service delivery

can assume responsibility for the various services required by each person.

This is precisely the approach taken by the Panel in developing its

proposals for improving the P.L. 94-142 program. As described in greater

detail in chapter 5, the Panel recommends that local education agencies

designate or employ an appropriately qualified health professional to

manage the related services component of the individualized education

program (IEP) that must be developed for each handicapped child who

needs special education and related services. (4) Provision for coordinated outreach. For the many families for

whom services are inaccessible, health care programs sometimes must do

more than provide an open door; they must take the initiative to find,

educate, and help bring mothers and children into the health system. Such

outreach efforts have proven effective in assuring that children and

pregnant women enter the cycle of care at the appropriate time and that

they receive appropriate followup care. The Panel emphasizes the importance of outreach services throughout

this volume and offers a number of proposals to enhance them. The Panel

recommends, for example, that local Title V agencies and community

mental health service programs be required to provide outreach services to

children and pregnant women as a condition to receiving grant awards.

With regard to the funding of these services, the Panel also recommends in

its Medicaid chapter that the Federal matching rate for outreach services

be increased substantially. (5) Coordination with other levels of care and types of services. To

better ensure both the quality and continuity of care, the Panel believes

'Comptroller Geoeral of the United Stases, neneral Accounting Office. Report to the Congress: Early

Childhood and Family Development Programs Improve the Quality of Life m LOVIV4.00003C Families.

Pubiicatoa Number HRD-79-660. Washington. D.C.: U.S. Government Printing Office. February 6. 1976.

12 24

Title V program. While the Panel endorses the overriding goal of the Title

V programto promote, improve and deliver maternal and child health

care servicesit believes that the program's more immediate objective

should be to focus its resources on those geographic areas without

adequate maternal and child health services. Thus the Panel proposes that

in funding direct service programs, State agencies administering Title V

should be directed to give special emphasis to assuring the availability of

needed services in medically underserved areas, especially those with a

high concentration of low- and moderate-income families.

Mechanisms for Program Oversight- and Accountability

The final theme common to the Panel's recommendations for each

Federal program is the establishment of mechanisms for oversight and

accountability. To ensure that maternal and child health care programs

are operating effectively and efficiently, the Panel believes that two

complementary measures must be taken at all levels of government. They

are:

(1) Improvements in data collection, reporting and nionitoring. The

primary goal of the Panel's proposals in this regard is for programs to be

better able to identify Federal, State and local expenditures, track the

number of services provided and the persons who receive them, and

ascertain whether program objectives are achieved. These functions,

which are increasingly important in an era of fiscal restraint, require the

collection and analysis of relevant data that can be presented in a manner

that meets various policy needs.

Because the Title V program is the cornerstone of the Panel's overall

strategy to improve health care for children and pregnant women, data

collection for the Title V program has been given special attention. In its

Title V chapter, the Panel emphasizes the need to collect certain types of

data and to design a practical reporting system that would allow Federal

ano State program administrators to assess program performance and to

manage Title V funds more effectively. To ensure coordination among

different programs, the Panel recommends that this reporting system not

be developed in a vacuum; the system should be consistent with other

relevant reporting systems,such as those for WIC and EPSDT.

Routine monitoring by Federal and State agencies is equally important

in measuring program performance. It is also essential in order to learn

whether services are actually being delivered in accordance with statutory

and administrative requirements. Both objectives can be achieved in the

area of mental health services for children, for example, through the

implementation of the Panel's proposal that the Secretary of DHHS be

required to report to Congress on the progress being made to extend

appropriate mental health services to all children. In the Panel's view, this

report should contain information on the type and number of services

being provided, the extent to which these services are meeting identified

needs, and the standards used in providing the services as well as other

14
relevant materiaL Periodic assessments of this type will help to assure that the health needs of children and pregnant women are being met adequately. Here, too, however, efforts should be made on a cooperative basis, where appropriate, by both Federal and State agencies administering the various programs analyzed in this volume. Monitoring procedures for the health services component of the WIC program, for instance, should be developed and performed in cooperation with agencies administering the Title V program. (2) Establishment of advisory bodies. The Panel believes that

maternal and child health advisory bodies should be established at all levels of government to provide visibility and public oversight and

accountability to the efforts of all maternal and child health programs. Locally, these bodies should be provided with the opportunity to have direct input on the operation of specific programs. With regard to mental health services, for example, the Panel recommends that CMHC advisory boards include both lay persons and professionals with a demonstrated

interest in providing maternal and child health services to children. At the State level, the responsibilities of such bodies should be broader

in scope than is the case with local advisory groups. State councils should

serve primarily as coalitions to support and assist State Title V directors and other agency personnel in ongoing program and policy formation. These councils, like the local advisory bodies,. should include consumers knowledgeable about maternal and child health issues. At the Federal level, the Panel believes there is a need to create a special advisory bodythe National Commission on Maternal and Child Healthwhich will have among its functions responsibility for reporting

to Congress and the Secretary of Health and Human Services on the health status and unmet service needs of mothers and children, and

recommending policy changes in Federal maternal and child health

programs to improve their effectiveness and to enhance coordination

among programs. To keep Commission members better informed as to what is taking place in maternal and child health services at the State

level, the Panel proposes that the Commission include at least one member of a State Maternal and Child Health Council.

PLAN OF VOLUME II

The following five nliapters take up in detail Title V, Medicaid and EPSDT, WIC, P.L. 94-142, and the recent Conzununity Mental Health Centers and Services Legislation. Each has the same general format: a

summary of recommendations; a brief description of the program being

analyzed, including an evaluation of its strengths and weaknesses; and a plan for program improvements, including specific recommendations. Chapter 7 briefly describes the other core programs. Because the recommendations are quite specific, and the Panel decided

it did not wish to trade away specificity for complete consensus, several

15

.2 7
dissenting views to particular ideas put forth in the various chapters

appear in appendix C. The Panel regards it as significant that in a volume

of this scope and detail, dissent was asslight as it turned out to be.

Appendix A,- as mentioned previously, is a summary of Federal

programs providing health and related services to children and pregnant

WOICIICIL.

Appendix B acknowledges the many people who assisted the Panel in

the preparation of volume II.

16
RR
provides Federal support to the States to enhance their ability to

"promote, improve and deliver" maternal and child health care (MCH)

and crippled children's(CC) services, particularly in rural areas and areas

of severe economic distress. Funds are to be used for: (1) services to

reduce infant mortality and promote maternal and child health and, (2)

services and facilities to locate, diagnose, and treat children who are

crippled or suffer from potentially crippling conditions.

The Title V program has a long and distinguished history. It was

enacted by Congress in 1935 and originally administered by the Children's

Bureau. The intent of Congress in passing this legislation was to improve

the health status ofmothers and children in areas of greatest need through

a program of assistance to the States. In the 45 years since Title V was

enacted, the purpose ofthe program and the broad flexibility accorded

States have remained relatively unchanged.

Some significant modifications have occurred, however, in Title V since

its inception. The most important began in 1963 when Congress adopted

the first in a series of amendments establishing special project grants for

specific maternal and child health activities in low-income areas. The 1963

law provided grants to State and local health departments for Maternal

and Infant Care (M1C) projects aimed primarily at reducing mental

retardation and infant mortality through prenatal, perinatal, and postpartum care, and family planning services. In 1965 other amendments

authorized special project grants to provide comprehensive health services

to children and youth through State and local health agencies and other

public or nonprofit organizations. In 1967, Title V was amended again,

this time to provide special grants for dental services to children. Until

1974, these project grants were administered federally. In that year, as

required by the 1967 Title V aniendments, direct administrative responsibility for these projects shifted from the Federal Government to the

designated State maternal and child health unit.

The 1967 amendments also linked Crippled Children's Services and

Medicaid in the provision of Early Periodic Screening, Diagnosis, and

Treatment (EPSDT). Medicaid was mandated to provide EPSDT as a

covered service for all children, and the CC program was required to

provide for the early identification of children who need health services,

and for the health care and treatment needed to correct or ameliorate

defects or chronic conditions. The amendments also provided that

Medicaid, CC programs, and MCH programs as well, were to enter into

agreements for the delivery and reimbursement of these services.

Today, each State is required to operate what the law terms a "program

of projects" in each of five areas: maternity and infant care, intensive

infant care, family planning, health care for children and youth, and

dental care for children. The statute directs States to establish these

projects in low-income areas and to provide "reasonable assurances" that

the broad objective for each type of project is met As interpreted by

regulation, a single project of each type satisfies the minimum Federal

requirement

30

18

administered by other State agencies, including welfare deartments,

social service departments, and, in three instances, State universities. State

administering agencies generally operate their programs through local,

district, or regional health departments, but many enter into contracts

with other agencies as well.

The activities of State Title V agencies generally span a wide range,

including training, consultation, standard-setting, quality assurance, advocacy, and planning, as well as the direct provision of preventive, primary,

and specialized health services. Although all States are engaged in each of

these activities to some extent, their role in providing and supporting

direct services is especially varied.

Within each State a portion of the MCH and CC funds is retained by

the State Title V agency for a variety of purposes and the remainder is

distributed to agencies and individual practitioners. MCH Rends, in many

States, go to local health departmentssome administered by the State

itself and others by local governments. These funds may be distributed by

formula, project grant, or other mechanism. As a result, States have

different degrees of control over the use of MCH funds locally.

In addition to the elements of the program of -projects, most State MCH

programs support maternity clinics and well-child checkups, immunization programs, vision and hearing screenings, school health services, and a

variety of other traditional maternal and child health services. Some States

also have used their MCH funds, usually combined with other funds, to

develop comprehensive care services for children and pregnant women.

Funds for crippled children are used to provide direct services in one of

three ways: through State-operated and staffed clinics, under contractual

or fee-for-service arrangements with private practicing physicians, or most

often, by a combination of full-time State staff and part-time private

physicians working together in State-operated clinics. Regardless of the

method used, however, all CC programs are designed to provide

diagnostic, evaluation, treatment, and rehabilitative services to children

with handicapping or chronic conditions, and all take a multidisciplinary

approach to care. State programs nearly always employ psychologists,

nurses, and physical and speech therapists whose services are coordinated sited

with those of the physician. Other health professionals may be on staff as

well. Perhaps most importantly, the CC programs assume responsibility

for case management; they prepare an individualized service plan, arrange

for the delivery of needed medical, health, and support services, and

modify the plan as needed to reflect changes in the child's condition.

Using their Title V allocation in combination with funds from other

sources, State Title V agencies provided health care to some 16 million

low-income women and children in FY 1978- These services were

provided by both State and local health departments? In addition, almost

400,000 individuals received medical care, over 41,000 received dental

2Data from the National Public Health Program Reportaig Sy.vtIto; (NPHRS). NPHPRS has estimated

that in 1978 approximately 43 percent of the maternal atsd chibd betith clicpeaditures of State agencies

carne from Federal Title V funds.

20 3 2
care, and more than 300,000 received other health services from MIC and COY projects.3 Besides providing assistance to the States and coordinating efforts with

relevant Federal agencies, the activities of the Federal office, OMCH, are

largely concerned with the achninistration of the grant programs in special projects, training, and research. Decisions about how these grant funds are

spent are made by OMCH, generally in consultation with other Federal officials, the regional offices, State officials, and in the case of the research

funds, on the advice of a peer review group. A large portion of the MCH Reserve B funds are currently allotted to

special projects in two program areas: Improved Pregnancy Outcome

(IPO) and Improved Child Health (ICH1. Under these programs, the States receive project grants and technical assistance to strengthen their capacity in these areas. Reserve B funds for CC services are used to

support a variety of clinical programs in all States and to provide several States with Interagency Collaborative Grants to work with State educational agencies in the implementation of the Education for all Handi- capped Children's Act, P.L. 94 -142. In the area of training, Federal grants are aimed at educating competent administrators and practitioners through interdisciplinary training. Priority for funding is currently given to training in areas such as genetic

screening and counseling, perinatal care, adolescent services, and services

to multthandicapped children. In recent years, nearly 8,000 health

professionals have received long-term and extended short-term training

annually. Finally, the research grant program supports projects that can lead to

improved methods of delivering MCH and CC services. The current emphasis is on adolescent health, child abuse, inborn errors of metabolism, congenital malformations, early case finding, and family counseling. Usually 50 to 55 grants are active at any one time. Title V program efforts at all levels of government have contributed

significantly to improvements in maternal and child health over the last four and a half decades. Panel members and many independent evaluators believe that the program has helped to bring about the decline in maternal and infant mortality, the reteuction of disability in handicapped children, and the general improvement in child health status. Its influence has been both directthrough the provision of services by local health depart- ments, schools, and especially Maternal and Infant Care and Children

and Youth projects and crippled children's clinicsand indirectthrough

the establishment and enforcement of standards of care.4

Despite the proliferation of other programs to serve low-income women

and children, including the handicapped, Title V-funded agencies remain

3Datat fame Hamm &Community Health Services Common Repurtimg Requirements (BOOR) system. For adatimal program and ?man data. ado I- Klarmadt. -1 nil and Clued Health and Crippled Clan's Serviees of the Social Security Act Problems and Oppormaities.- Ia Berm Health kir Our Clasism A /Varionat Steamy. volume IV. Viaddithgton. D.C.: U.S. Governmrat Printing Mice, 1981.

M. "Stares of Intent and Perinstal Poicebidity and MortelityA R.view allas Litedrature.'

PabEc Ir of Reparte91(4), Waellitigion. D.C.. US. Governmeat Printbag OlSce. Le7S.

21
the only source of care for such groups in many areas. Without maternal

and child health services, fewer women would have received health care

during pregnancy, delivery and the postpartum period, and fewer infants

would have had care during their first year of life. Similarly, without the

crippled children's program, many crippled children would not have

received the case management and ongoing care and treatment they

required

BASIS FOR RECOMMENDATIONS

Although the Title V legislation requires States to extend and improve

services aimed at reducing infant mortality, promoting the health of

women and children, and locating and caring for children with handicapping conditions, the structure ofthe program, its level of support, and its

current operation are inadequate to achieve its stated purposes. Indeed,

recent statistics and reports document that:

Many women, especially those at highest risk, receive no prenatal

care at all or they receive it late in pregnancy.5 Many high-risk pregnant women do not deliver at centers that are

equipped to meet their specialized needs.6

Many newborns in need of neonatal intensive care unit treatment

do not receive it either because such a unit is not available or

because personnel are not trained to use it.7

Many infants and children have no regular source of primary

care" Many young children still do not receive all recommended

intununiz' ationsf

Many children with handicapping conditions do not receive the

services they need to function at their optimal levels-I°

No single program or combination of programs could be expected to

meet the health care needs of all children and pregnant women, yet the

Panel believes that Title V's broad mandate, long history, and significant

investment of Federal and State funds could nave produced a more

effective system of health care services for children and pregnant women,

5Natiosal Center for Health Statistics. Primate Care, United States, 1969-1975. DHEW Publication

Number (PHS) 78-1911. September 197$.

(Comptroller Geneinal of the United States. General Ace:counting Office. Amer Management and More

Resources Needed so Strengthen Federal areas to Improve Prqprastry Outcome: A Report to the

Congress. Wasbington, D.C.: US. GovernmentPrinting Office. 1980.

7Comptroller General of the United States. General Accwounting Office. Better Management and Afore

Romances Needled t o Sows:rhea Fedora/ Efforts to improve Pregnancy Outcome: A Report to the

Congress Washington. D.C-: US. Gower lamentPrinting Office. 1980.

*See Better Health 1b Our Children: A Nations/ Streams, volume M. Table 26-2$, 30. Washington.

Ma: U.S. Gyve:lament Printing Office, 1981.

'Sas Beam Ileskh for Our Children: A National Strategy, volume HI, Table 23. Washington, D.C.:

U.S. Government Printing Office, 1981.

2°10ernssis. I.... "'Maternal and Cliild Health and Crippled asalldren's Services of the Sail Seciuity Act:

Problems and Opportunilies."' In Better Health for Our Chrldren: A National Strategy. volume IV.

Washington. D.C.: US. Government PrintinigOffice. 1981.

22 34
and thus even greater reductions in infant inortalitY'Zhile polertn

lack of education may be significant factors associi2,7,.1 With ensile; maternal Ir and mortality, some excer.,67Z. tioinpnblema_

health ca (tens have had a major positive irlsor'_.04.47,auch

even who . ng conditions remained unallu"6"- kite su'sitnilatt.

differenc*- of morbidity and mortality 11141 ---°-14 beabL 17491 serVICea, IIOCiOCCOnCr.AX characteristics suggest differences 10 -kt care

includa-45 Title V operations, and the opportunity for : "441 itupro.74

6autt When the Title V program was initiated, it was cari41..... assolli__1 health States would create strong maternal and child health in cbildratzx A pregnant departments to provide complete health services prosz. orojeets women. In fact, this has not happened. Even after th__.,,mmc Atosvide

became a require:client, States generally did not P'tt the 16"-- COY development of primary care programs based on _1 can' ie

project models. Instead, States accepted the traditicoS,'"Ai bes%ride model as the arrangement for Title V services. As ttence'd;screte services far too often are provided through sel"--`" and ama, programs, usually preventive in focusa perinatal

tion program, a V.D. program, a well-baby prograJ ttn.

With the exception of the Maternal and Infant GA' Youth models, which are required to provide treannea'-vvvices, th great variations in the way that Title V beneficiaries.:'., ye the 0, l require. The Panel found that in some States, priglialnhaalLi the soots.'" love, health departments provide medical care for sick 'drvasi 31ck income families through public clinics and hospita-,_ het -tai rep

children usually are referred to either private Phi-74k4s or certanl- cost of Which, outpatient departments fel- treatment services, the

situations, is reimbursed by the local or regional health The inequities' arc perhaps even more strilcing for bajl'ettbyped 6".:5-6 for According to OMCH, all crippled children's progras?".._--41kie _A n handicapped children who need orthopedic or plastsch y sP16:4 ioi

all include services for certain chronic illnesses, and $ ts""- os

problems requiring surgery. But there nevertheless t varis'ststes, coverage for the 125 established diagnostic categor441 aotaeA the

children with chronic otitis media, for example, may _s..°7"-`-`ver, trooPd--- for O CC program and in other States they may not; insZtItring

children who cannot receive appropriate treatnient,'7,1' be sir'_.a,tes iu

Beyond gaps in service coverage" there are sell-1°17. ost- be By regulation, preventive and di' ''Evictes Os anand available to all women and children at no charge; 1.'" 'vet- Sts cg for

even localities are free to set their. own income eliebileiltude_Y reclUires

all other services. The Panel is concerned that this

with

'euir

differences in Medicaid eligibility criteria among Stsart v da- one

situation: women and children may be eligible for Ti

community but not in another, or in one State but no t The Panel is concerned that in some communLnc'dr'lati; ancl edulie

prejudice also creates barriers to care. As with

certain groups of beneficiaries may be discouraged std Tide V prOgraMS because of discourteous and indlin,..--"Littkent; ,tv be

some instances, opportunities for receiving Title V sew' tilaky siow' 23
foreclosed to them. These concerns have been mentioned In the literature

and cited by practitioners and client advocates. Children's Defense Fund

(CDF) staff note, for example, the common and subtle discrimination of

some private providers who refuse to treat minority families, and who

refuse to join in cooperative arrangements with health departments.I

Similarly, language barriers in Title V projects can also limit accessibility,

particularly for Hispanics, Native Americans, and Southeast Asians.

Many inequities in access to care and services are due to the absence of

statewide planning for maternal and child health needs. States have

relative freedom in deciding the populations they wish to serve and the

services they wish to provide. For the most part they have not allocated

service funds on the basis of needs assessments in each service area. Their

decisions, instead, have often been guided by political considerations.

Many States, for example, distribute MCH funds to counties according to

a set formula, and many cover diagnostic categories for services to

handicapped children in response to consumer and provider constituencies. The result has been occasional duplication of services between Title

V and other agencies in the same area and, more often, serious gaps in

services or no programs at all in areas ofpressing need.

States, however, are not required to undertake comprehensive planning

for the distribution of Title V funds.I2 Even the requirements for the State

plan document arc minimal. Although a State plan for the use of Title V

funds must be approved before the funds are allocated, there is no

required format for these plans. Since 1968, Federal and regional offices

have not even required that plans be submitted. The plans must be

available in State Title V agencies for inspection by regional officials, but the inspections seem to be limited to checking for the inclusion of

information necessary for conformance with certain statutory require- ments. Even when plans are checked for the presence of required

information, the content of the information is not reviewed. The Panel

believes that the absence of adequate mechanisms for assuring the most

effective use of Title V funds has impeded the ability of the Federal

Government and the States to pinpoint problems and develop solutions.

The lack of accountability is ofparticular concern to the Panel. Central

to the problem is the inadequacy of current reporting systemsthe

National Public Health Program Reporting System (NPHPRS) and the

Bureau of Community Health Services Common Reporting Requirements

(BCRR)neither of which provides the information necessary for

adequately monitoring State Title V agencies. Not all States report under

these systems, and the data they do report include services provided with

funds from Title V and funds from other sources. Some pertinent

information is not collected at all. NPHPRS, for example, does not collect

such information as the racial characteristics of patients and the types of

services delivered. The collection of management information and data on

"Information obtained from interviews with CDF staff.

°Recenly. however. OMCH has begun to encourage State Title V agencies to undertake planning

activities. 'Cruidelin' es- for both an Objectivesand Activities Report and an Annual Program Performance

Report discuss measurable objectives, ways to accomplish them and to evaluate performance against

them. These glad' dines emphasize health services for all mothers and children and cooperative

arrangements with other health-related programs.

24

3L
specific categosies of owe that have been used for many years has been perpetuated without any overall policy direction. Moreover, both data

systems are only compatible with Federal and State assists for other programs aimed at the came populationssuch as C

(the Special Supplemental Food Program for Women, Infants, and Childress), EIPSIWI r, and Family Planningleading to expensive, possibly

overlapping repenting systems. The accountability problem is further aggravrted by the fact that States are permitted to meet their financial match requirements with in-kind

services. This results in the diffusion of Title V funds to support activities across many health department including those only peripher- ally related to women and children, and also permits the support of general health department overhead. The Panel is a/90 concerned that Federal staff members at the central

and regional levels are not sufficiently monitoring the States to assure that Federal and State matching funds are used to further the purposes of Title V. Several reports13 note the absence of State documentation to substanti- ate that matching funds are, in fact, allocated to activities approved in the State plan, even when regional health authorities identify this as a problem. There is also no monitoring system to assure that funds channeled into States are being used for programs and services strictly

related to maternal and child health.

The Panel concludes that meat problems with the Title V program are

largely attributable to the vagueness of the authorizing legislation and to

insufficient funding support. The Title V program rests on a statutory

foundation that specifies broad goals but provides little in the way of

requirements for achieving them. Because of this vagueness it has been

abisoist impossible to tell a State it was doing something it should notor

fading to provide a service that it should. Moreover, there are no appropriate sanctions or other enforcement =wheals' ins. Federal legislation authorizes the withholding of Federal funds for noncompliance with statutory requirements, but these require- ments are minimal. Additionally, of course, the sanction is not likely to be

imposed, since a full withholding of funds would harm the women and

children who need services.

Financial issues have created further complications. The Panel believes

the Federal fkinding has never been adequate to the overall Title V mandate- As a result, States have been forced to omit essential services and OMCH and the Federal regional offices have been limited in staff

resources to provide needed consultation and assistance. The inadequacy of the total Federal funding level has been compound- ed by inequities in the distribution of funds to States. The Title V basic grant formula for MCII and CC programs has always favored States with

large rand populations. When Congress shifted direct administrative

responsibility for project grants from the Federal Government to the designated MCH State units in 1974, Federal funding for existing projects

ow Abe onssapie, U.S. Daps:teem of Hooltb. Edocatios, and war ., °Moe of due leopector

Gessid. 'Repast on Audit d MCH Programs Achetbsistesed by the Seale Dowd at Homitb. Indisasporm

indium.' Aiwa 19711.

37

25
was folded into the MCH State allocation. This brought any rural States

a windfall and left some large industrial States shortchanged, because

rural States are favored in the MCH funding formula and because

urban States previously the bulk of project grant funds. To

compensate, Congress provided for Supplemental "Section 516" funds to

be distributed among States receiving fewer dollars under the new

arrangement. But these States have not received an increase in funds for

yearsdespite their significant populations of inner-city poor

while rural States have.

Many of the problems with Title V date to its origin. The historic roots

of Title V produced program directions that are no longer in keeping with

health care trends. When the Social Security Act was passed in 1935, the

social climate was not ready for a large-scale governmental role in the

financing and provision of medical care. Most Title V agencies developed

preventive can programs, such as prenatal care, well-child care, immunizations, vision and hearing screening, and most physicians were supportive of their doing so. On the other hand, at least in most States, treatment

was reserved for the private physician or the hospital. The MIC and CacY

projects had to -._ - initiated by Federal grants to change this pattern. Even

when the projects were made an integral part of the State Title V program

through the program of projects, relatively few States with funds available

chose to expand the comprehensive care model statewide.

As gaps in services became apparent, Congress created new, separately

funded programs, such as EPSDT, WIC, and Family Planning project

grants, rather than strengthening the Title V mandate or increasing its

appropriation. Originally, funding for the Community Health Centers,

Head Start, and other Federal initiatives in service delivery flowed directly

from the Federal Government, through the regional offices, to local

sponsors. In most cases, the State health departments had no part in the

decisionmaking process. Recently, OMCH has been urging State Title V

agencies to become involved with the Federal projects through consultation, planning, and technical assistance activities, but it will take time to

overcome many years of inattention and interprogram hostility. As a

General Accounting Office report cites, the multiplicity of congressionally

mandated child health programs, the fragmentation of efforts among

several Federal agencies, and the lack of effective coordination remain

impediments to the delivery of comprehensive, high-quality services for

children and pregnant woman-14

Policies adopted by the Administration in the early 1970's to reduce the

authority of Federal agencies also shaped the Title V program- To offer

more flexibility to States and remove what were perceived as excessive

administrative burdens on them, many mechanisms for accountability and

reporting were abolished, and Federal staff positions responsible for

overseeing these functions were eliminated. Now the need to restore

accountability and provide effective Federal leadership is critical.

"Comptioller Climatal of the United Stases, General Aoccounting Ofrace. Beater ltlanagnesent and

Adore Reeeercee Needed eo Stresistben Federal Efforts to Isepomme Pregnancy Oetoonse:A Report to the

Cimprana Washington. D.C.: U.S. GovernmentPrinting Office, 19410.

26 38
PLAN OF ACTION

Despite these problems, the Panel is convinced that the Federal, State, and local agencies administering Title V could provide effective leadership

in improving health care for children and pregnant women. Given a clear statutory mandate and increased Federal support. the Panel believes these

agencies can make major strides in achieving the goal of a comprehensive and coordinated system of high-quality maternal and child health

servicesa system that will assure children and women access to

the services most essential to their health and .., t, and that will make available the health services required for the success of other

federally funded programs, including WIC, P.L. 94-142, Head Start, sum: Medicaid's EPSDT.

The Panel's basic approach to strengthening the Title V Program is: first, to assign State agencies broad responsibility for planning, advocacy, quality assurance and other activities to promote the quality and

availability of maternal and child health services throughout the State; and second, to direct these agencies to use grant funds to support certain

needed services, especially in medically underserved areas. A complementary and supportive role is proposed for the Federal Title V agency, including setting minimum service and provider requirements, providing

technical assistance. and monitoring State activities to assure all Federal and State objectives are met. To further enhance the Title V program, the Panel also recommends: the creation of national and State advisory committees on maternal and child health

improvements in Federal and State mechaniSms to assure ac- countability

an increase in Federal funding for Title V as well as a simpler and

more equitable approach to distributing these funds To implement these recommendations, the Panel advocates major

revisions of the Title V legislation, as well as regulatory and administrative policies to carry out the proposed statutory changes. The Panel recognizes

that some of its proposals could be implemented under existing legislative authority. However, the combined need to recast the purpose of the program and to establish mechanisms and administrative responsibilities

to ensure that these purposes are achieved does warrant legislative action. Congress has reviewed and modified the Title V legislation approximately

every 10 years. The last amendments to the law were enacted in 1967;

therefore, the Panel believes it is appropriate that Congress reassess the Title V program and its legislative structure at this time. The Panel urges that new legislation include as the purpose of the Title V program the development of a comprehensive and coordinated system

of health care for women and children, with special emphasis given to four priority services. These are: comprehensive prenatal, delivery, and postnatal care comprehensive primary and preventive care for children from

birth through age 5

family planning services

27

39

department services from well-child conferences into pediatric ambulatory

services providing comprehensive primary care. This objective might be

achieved in 18 months, during which the State agency staff would provide assistance in preparing the Title V grant application, make the grant award, and continue to provide the management and program assistance

ieeded to complete the conversion. Or a State agency might determine

that adequate services would be available if a specific facility improved

the quality of its service, and that this objective could be achieved through

monitoring, technical assistance, and training over the course.- of 9 months.

In carrying out these planning functions, the State agency should be

mandated to give special attention to the needs of women and children for

the four priority services identified by the Panel. Indeed, the statute

should require that State agencies specify how these services will be made

available throughout the State. Because of the importance of developing maternal Lind child health

resources that will improve the effectiveness of other Federal programs, the Panel recommends that States be required by statute to include in

their plan specific information about the coordination of maternal and

child health services with other related programs. States should be

required, for example, to identify how specialized services for handicapped children will be coordinated with the implementation of P.L.

94-142, how preventive and treatment services funded or planned by the

State Title V agency will be coordinated with EPSDT, 1.nd how each of

these services will be made available to children in Head Start. States also

should be required to describe joint efforts with the Developmental Disabilities Program and the Supplemental Security Income program of

services to disabled children. Moreover, the Panel recommends that the

Title V agency be directed to assume responsibility for developing the WIC service plan, provided it meets the affirmative action and other

requirements prescribed by Congress and the Department of

Agriculture-17 All such pl .iimi-rig must be carried out with the involvement

of the State agencies or Federal regional offices responsible for acirni-nistering these programs. Each agency would have to review and approve

relevant components of the Title V plan_

It is imperative that this plan be consistent with the generic State Health

Plan submitted to the Secretary under the requirements of the National

Health Planning and Resources Development Act. Although the Title V

plan would contain detailed information on maternal and child health

services, strategies for change, and other issues specific to Title V, it would

also contain, certain information, such as health indicators and service

needs, that must comport with the comprehensive health plan for the

State. For this reason, the Panel strongly recommends that the Title V

legislation require State Title V agencies to coordirate and cooperate with

the State and local agenciesthe State Health Coordinating Council (SHCC), the State Health Planning and Developmental Agency (SHPDA) and the Health Systems Agencies (H As)responsible for developing the

State health plan. The Panel also recommends that the Health Planning

"The Panel recommends, in its discussion on WIC in chapter 4 of this vet..22.-... that USDA require State

agencies administering the WIC program to adopt this plan.

29
Act be amended to expand the present requirements for maternal and

child health care services and to add explicit language requiring a joint

effort with the State Title V agencies. The process used to prepare these pinning documents probably will

vary from State to State. The Panel expects, however,. that the SHPDA's

appropriate responsibility would be to compile demographic data and

information on available maternal and child health resources_ Title V

agencies, because of their clinical and program expertise, would be

responsible for assessing the adequacy of existing resources and judging

the need for new and improved services. Regardless of the exact division

of responsibility, it is essential that State and local Title V agencies present their views to the SHPDA and HSAs through testimony, in public

meetings and, informally, through routine staff communications.

Requirements for Promoting Quality and Accessibility of Services

The statutory requirements placed on the States for promoting the

availability, accessibility, and quality of maternal and child health care

throughout the State should include advocacy, technical assistance and

training, quality assurance, coordination, and similar activities_ The

statute should require these activities to be broadly focused and to involve

other publicly supported programs serving the health needs of children

and pregnant women, including comprehensive health care centers, other

primary care centers, family planning clinics, and inpatient and outpatient

hospital departments. The Panel envisions that State agency activities to improve the

availability and quality of the maternal and child health care system might

include, for example: persuading providers to supplement the services they now offer to

include family planning or other needed services

assisting appropriate local agencies in preparing a grant application for Title V or other funds

providing training on prenatal risk screening to health department

clinics, CHCs, and other programs serving pregnant women

fostering the development of citizen advocacy groups for improved maternal and child health care establishing standards and monitoring mechanisms for Title V

and other services, such as the medical and health services

required as "related services" under P.L. 94-142

State agencies will not always be able to carry out these mould ates

directly_ Bureaucratic constraints, insufficient resources, or lack of

expertise may present obstacles, particularly in the area of advocacy. Legislation should, therefore, require States to achieve their objectives,

when necessary, through contractual arrangements with appropriate

public or private nonprofit organizations in the State.

Requirements for Service Programs

The other major function of State Title V agencies is the funding of

MCH service programs. The Panel has several proposals it believes will

result in better use of resources and increased program accountability_

30 4 9
The Panel recommends that the Title V statute specify that grant awards be made in each service delivery area in accordance with the objectives specified in the State Title V plan. The priority services prenatal care, care for young children, =ire for handicapped and

chronically ill children, and family planningshould be funded first. Meeting these priorities requires a service system comprised both of community-based primary care programs and regionalized programs in

perinatal care, and secondary and tertiary care for specified handicapping

and chronic conditions.

Grant funds should be used primarily to expand existing MCH

programs and to establish new ones in order to build a coordinated system

of comprehensive, high-quality health services for children and pregnant women, especially in medically underserved areas that have a high

concentration of low- and moderate-income families. Any agency that can

provide the services needed in its service delivery area and that meets all Federal and State provider standards should be eligible for grant funds. Standards prescribed by Federal statute should require that providers: meet all minimum service and quality standards for level and type of care prescribed by Federal and State regulation provide patients, at a single site or through linkages with other

levels of care, all preventive, primary, and specialized services provide a comprehensive child health assessment and comprehen- sive health assessment for pregnant women, as appropriate provide outreach and followup services assure access to care through reasonable operating hours, provi- sion for transportation and child care services, and other appropri- ate policies and mechnrihms have cooperative arrangements with other sources of health care, including, as appropriate, pediatricians, obstetricians, hospitals, local WIC sponsors, federally funded eiinics, Community Mental Health Centers, and social service agencies have cooperative arrangements with Head Start and day care projects, schools, family planting clinics, and other sources of

referral

undertake responsibility, as appropriate, in conjunction with local educational agencies for child-find activities and for diagnostic, evaluatizA, and health services required under P.L. 94-142

establish internal procedures to assure program accountability, quality, and appropriateness of services maintain current health records for all patients make maxinnun use of new health professionals, such as nurse practitioners and physician assistants, and employ members of the

community in appropriate positions develop and use an advisory board with a majority of consumers, at least half of whom must be users of the program

The statute should direct States to establish additional service require- ments for the identification and treatment of certain types of illnesses, conditions, or disorders prevalent throughout the State or in a particular service delivery area. For example, a State with lead mines in certain

service areas might require Title V providers to test all children receiving

31 -3
services there for lead poisoning. Another State might have an influx of

Southeast Asian refugees and determine that each immigrant child should

be given appropriate tests for tuberculosis.

Title V legislation should provide that grants be awarded competitively.

State agencies should cwefully define needed services and the funding

available to support them. Proposals then should be solicited from all

qualified providers. Consistent with its conviction that many types of

provider resources can and should be involved in the delivery of maternal

and child health care, the Panel expects that eligible providers would

include hospital ambulatory care centers, federally funded primary care

centers, HMOs, and group practices of private physicians, in addition to

local health departments and the MIC and C&Y craters. Grants should

be made to the local or regional health provider that meets the provider

standards and can best provide and make accessible a particular type or

level of service required by the plan. To minimize disruption in services, however, the Panel recommends

that for the first 3 years the law is in effect, State Title V agencies should

have the option of giving special preference to health departments and

other current recipients of Title V funds. During that time, the State Title

V agency should help these programs meet provider requirements and

conform with the Title V plan. After the 3-year grace period, any recipient

of Title V funds which did not satisfy all requirements could lose Title V

support to a more qualified provider. If, however, there were no qualified

alternative provider, the currentrecipient could continue to receive Title V

funds so that women and children would not be cut off from services.

However, the State agency would monitor such providers closely and

continue to give technical assistance aimed at bringing about necessary

program improvements. The Panel recommends also that the statute set out requirements

pertaining to the use of grant funds, limiting allowable costs to:

reasonable administrative expenses, the cost of care provided to individuals not covered by Title XIX or private insurers, and the cost of certain

servicesincluding outreach and health educationwhich are not reimbursed under Title XDC or private insurance. As needed, "start-up" costs

associated with developing a new program or resource should also be

covered. To assure that maternal and child health resources are available to as

many as possible who require them, the Panel recommends that States be

permitted to establish cost-sharing requirements for patients, provided

that they are charged in accordance with their ability to pay. Services must

be provided free of charge, however, to patients whose income, after

adjusting for family medical and health-related expenses, is at or below a

State-established rate set between 125 and 195 percent of the federally

defined poverty leve1.18 Additionally, no patient should be charged for

diagnostic or preventive services.

"The Panel is suggestMg the same range for the income eligilelity standard required under the WIC

program.. See chapter 4 ofthis volume.

4

32
Additions& State Requirements

'The Panel proposes several additional legislative provisions relating to

the overall administration of State Title V agencies. The Panel recom- mends, for example, that not more than 25 percent of a State's allotment be expended on administrative, planning, and advocacy activities; the

remainder should be used for service project grants. The Panel recom- mends also that Title V agencies be mandated to have a full-time staff who meet all the qualifications and requirements prescribed by the regulation. The Panel expects that Title V agencies will be organized according to

broad function, such as planning, quality assurance, and service delivery, but that within service delivery there will continue to be one unit with

special responsibility for maternal and child health services and another with resgonsilyility for specialized health services to handicapped

children_ Another is that State Title V agencies be mandated to establish an

appeals process for service programs that are disapproved for funding, or

judged not to satisfy quality assurance standards_ The process should provide for a State-level appeal, and then an appeal to the Federal regional offices. To provide assistance and oversight to the State Title V agency and to

advocate the health needs of mothers and children within State govern- ments, the Panel recommends further that each State be required by

legislation to create a Maternal and Child Health Advisory Council appointed by the governor_ The majority of the council members should be knowledgeable citizens (not health professionals),20 at least half of whom must be users of Title V and other publicly supported MACH

programs. Other Council members should be members of various professions providing maternal and child health care, especially primary

care, as well as planners and administrators of maternal and child health

services. This Council must have responsibility for making recommen- dations to the governor and Stare Legislature on all State policies affecting

the quality and accessibility of maternal and child health services, and to

the State Title V agency director on the State Title V plan, the plan for service program grant awards, and all matters of general agency policy.21 The Panel recommends the statute specify that to receive Federal funding, State Title V agencies must submit a 3-year plan. The plan

should contain all needs assessment, health status and other data, and

information required by the Federal agency, and should specify perfor- mance objectives for each year and the strategies to achieve them. It should also contain information on staffing, State monitoring, and other administrative efforts.

"Tile Panel is proposing that the term 'Crippled Clandren's Services" be replaced bya terra such as

speciakted services for handicapped children' because it is mare in keeping with the wide range of services todays lide V programs provide.

2°Two Panel members dissented from this reoosnmenclautice_ See appendix C of thiz volume.

"See volume I. chapter 10 for a fun chscamion of the Paean reconnnendaticas concerning thepurpose

and rag of the proposed State .Advisory Coarsens.

33
Finally, the Panel urges that the revised Title V statute contain penalties

for States that are in substantial noncompliance with Federal requirements or that consistently are unable to meet reasonable performance

standards. In such cases, the Federal administering agency should be

authorized to withhold from the State agency all or part of its Federal

Title V allocation. It should make arrangements for these funds to be

administered temporarily by the Federal agency Director, another State

agency, or a private nonprofit organization, so that individuals served by

Title V programs in the State would not be penalized. Due process

protectionsincluding written notice, an opportunity for a hearing, and

the right to reconsideration after a 90-day periodshot-ld be made

available to the States.

Bureau of Maternal and Child Health Services

Legislative Authority

The legislation should provide that the Title V program be federally

administered by a Bureau of Maternal and Child Health Services

(BMCHS) within an appropriate agency ofthe Public Health Service 22 As

discussed in volume I, the Panel recommends that the Secretary ofDHHS

establish a Maternal and Child Health Administration (MCHA) to

promote the coordination of all health care services to children and

pregnant women23 If this Administration is created, the Bureau should be

housed within it.

The statute should enumerate the duties of the Director ofthe BMCHS,

including responsibility for administering Title V, promulgating regulations for its implementation, and ensuring full compliance with Federal

requirements; carrying out a Federal discretionary grant program of

research, training, and demonstration projects; and advocating Federal

policies to improve the delivery of maternal and child health services

generally_ In addition, the Director should be required to review and

approve regulations for the Title XIX EPSDT program and to participate

in the development and implementation of policies and regulations for

other departmental programs affecting the health of children and

pregnant women. The legislation should provide that a discretionary grant program plan

be developed by the Director and approved by the proposed National

Maternal and Child Health Commission..24 Public and private nonprofit

agencies and institutions should be allowed to compete for these funds

with applications reviewed in an open and fair manner, using a peer

review committee to evaluate proposals and recommend funding to the

Title V Program administrator.

22022C Panel member dissented from thisrecommendation. Sec appendix C of this volume.

23Sec volume 1. chapter I I. for a full discussion of the structure and purpose of the proposed MCHA.

24The Panel's legislative proposal for theNational Maternal and Child Health Commission is discussed

later in this chapter.

34
The law should specify that research grants be used to fund projects

that will contribute new knowledge about effective clinical interventions and improved organization of maternal and child health services. Training grants should be used for degree and other training programs that will assure an adequate supply of national experts in maternal and child health policy, as well as administrative and clinical staff in the maternal and

child health field, with special emphasis on developing staff from

communities receiving Tide V services. Training grants also should be used for conferences and programs to firrnilinrize adrrkinictrators, provid- ers, and interested citizens with obstacles and solutions to establishing

comprehensive maternal and child health service systems. Demonstration project grants should be used to fund projects that test innovative

approaches to service delivery, or that promote effective methods of advocacy. In order for the Bureau to carry out its broad mandate, the Panel recommends that the Title V legislation require the Bureau to have a

central and regional office staff with sufficient capacity and asiministrative, planning, and clinical expertise.

Service and Provider Standards

One of the Bureau's primary responsibilities will be the prompt issuance of regulations and guidelines to implement the new legislative policies. Minimum service requirements for certain levels and types of services, such as preventive services for children, care for women with high-risk

pregnancies, and specialized services to handicapped children, must be set by regulation. These should specify the components of each level or type of service, as well as national standards for personnel, facilities, and

delivery of care. The Panel believes the standard-setting procedure should be a public process, and should continue to be undertaken in collaboration with the relevant professional and institutional groups, such as the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, the American Nurses' Association, the American Medici: Association, and the National Medical Association. It should

also involve participation by other Federal programs administering MCI-I service programs and by child health advocacy groups. The regulations should include a waiver policy for all federally

established standards to cover limited instances where there is adequate

justification for making an exception, such as the inability to obtain

personnel with certain credentials in isolated areas. Federal regulations

should also prescribe minimum expectations for monitoring performance: for example, how often records should be reviewed, who should conduct

the audit, how large a sample is required, and when procedures other than

record reviews are essential. The final standards and procedures should be

reviewed and approved by the proposed Maternal and Child Health Commission. Each State Title V agency should have the option of setting

higher standards for the programs within its boundaries, with the approval of its State Maternal and Child Health Council35

7
Stake Plan and Or Requirements

The regulations also should set out requirements for the contents of an

approved State plan. These should include a full description of the State's

maternal and child health objective& timetables, and strategies- The plan

should provide basic information regarding the designated service delivery

areas, needs assessment method and findings, and procedures and criteria

used to set priorities. In addition, service and provider standards, and all

other programmatic, administrative, and budgetary information needed to

assure compliance with Title V should be included. As part of these

requirements, the Panel believes the Director may find it necessary, for

example, to require States to outline their strategy for reducing mental

retardation and infant and maternal mortality. Furthermore, the regulations should establish data collection and

reporting requirements for State agencies. In particular, the Panel

recommends that State agencies collect three types of data, each of which

can be analyzed and presented in different ways to meet different policy

needs including accountability to BMCHS and internal agency management, as well as plan-fling, quality assurance, and other State activities.

These data are:

Management information on receipt of services and use of funds,

including the number and types of individuals served, services

provided, provider characteristics, and Title V expendituresService program evaluation data, including data pertaining to

services provided, populations served, and expected health outcomes measured against specific goals and objectives, as well as

periodic and systematic on-site evaluations.

Policy-related epidemiological data on health status and health

care access, including problem-specific record reviews, such as

studies of the antecedents of infant mortality based on linking

birth and death records, or of the geographic distribution of

women who receive inadequate prenatal care, or schools with low

immunization rates.

The most important requirement is that the Bureau design a practical

reporting system that will allow it to assess program performance and to

manage Title V funds more effectively. One component is needed to

collect and analyze data on the use of Title V funds by States.

Earnmination of the budgets of several of the current State Title V

programs should suggest categories of expenditures, such as planning or

service program funding, that all States could be required to use. Another

component is needed to determine who receives what services and from

whom. The Panel recommends that an expert committee be assembled to

determine basic data needs and to establish a single comprehensive

reporting system for the State Title V agencies. This system should be

consistent and compatible with other relevant reporting systems, such as

those for the EPSDT, Family Planning, and WIC programs. In addition, it

should provide for tracking changes in the health status of children and

pregnant women served under Title V. The committee should meet

annually to examine aggregated State data, determine its validity and

36

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million per year, just over twice the amount currently appropriated. This

funding increase, along with other recommendations, will enable Title V

agencies to bring essential maternal and child health services to women

and children now classified as "medically underserved." It will also make

available health services that will increase the effectiveness of many other

federally supported programs, including WIC, PI- 94-142, Head Start,

Medicaid, and EPSDT. Moreover, because of the priority that would be given to primary care,

additional funding would, in the long run, show a positive cost-benefit

ratio. Prenatal and family planning services reduce the costs associated

with the delivery and care of premature and low-birth-weight infants. Comprehensive care for all children through age 5 reduces costly

emergency room usage and hospitalization. In addition, improved services

for handicapped children should reduce dependency, and augmented

programs of prevention should reduce illness and injury, so that there

would be cost savings in these areas as well_

Assuming the recommended increase in appropriations is adopted, the

Panel believes that Congress must revise and simplify the formulas for

apportioning Federal funds between State and Federal activities and

distributing them among the States. The Panel recommends that up to 20

percent of the total appropriation should be retained by the Director of

the Bureau of Maternal and Child Health Services to use at his or her

discretion to support training, research, and demonstration projects.26 The

remainder should be allocated mong the States by using a formula that

gives each State a basic grant plus an amount reflecting relative need

among the States.27 Relative need could be established by using the

combination of infant mortality and morbidity rates and adjusted per

capita income.26 The Panel suggests that Congress request a separate

committee, perhaps the National Maternal and Child Health Commission

proposed by the Panel, to make specific recommendations regarding this

and other aspects of the formula. The philosophy behind the Panel's financing recommendation for Title

V is that States must be given an adequate budget, based largely upon

need, and that they must be permitted flexibility in expending funds. For

this eason, the Panel urges that the current practice of designating funds r

for MCH and CC purposes be discontinued, and that States receive their

Federal allocation in the form of a single grant-26 States should be required,

however, to provide a cash match for the Federal Title V grant of an

amount at least equal to 30 percent of the total, and to provide assurances

that current matching levels will be maintained. In the third quarter of

each fiscal year, any State that has not committed any portion of its

Federal funds should be required to return those funds to the Bureau

Director so that they may be awarded, with no match requirement, to a

program in the State that is able to provide a service identified in the State

plan.

211rOuse Panel member dissipated from this recourrnendation. See appendix C of this volt

"T to la would elizerbrate the authoricstion of funds under Section SI& However, because of the

substantial increase in the total appropriatioa. the Panel believes that no State would be awarded less

fbaciang than it currently receives.

38 5 0
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1541515.511. 4_)1 I 8....4_1 I Lit V. 1'4 I I b. e ons its I
transportation. Statutorily mandated program requirements are minimal:

the law permits States wide latitude in determining eligibility, covered

services, and provider standards. Among the basic requirements specified in the legislation are those

pertaining to eligibility. States participating in Medicaid arc required to

cover persons who are "categorically needy": all residents receiving public

assistance under Aid to Families with Dependent Children (AFDC), and

most receiving assistance under Supplemental Security Income (SSI) for

the aged, blind, and disabled. At State option, categorical coverage may

be extended to financially eligible pregnant women, and to families in

which the father is unemployed, if these groups are not covered in the

State's AFDC plan. Categorical coverage may also be extend.ed to

children of two-parent families which meet the AFDC income standard

(the so-called "Ribicoff children"). However, States are permitted by

regulation to limit coverage for such children to certain "reasonable"

subgroups, such as those in foster care or psychiatric hospitals. In addition, States are permitted to provide Medicaid benefits to the

"medically needy." These are individuals whose family income exceeds

the State's income eligibility standard, but who meet the AFDC or SSI

categorical criteria and are unable to pay all or part of their medical

expenses. Children from two-parent families may be included as well. Financial eligibility for the medically needy program may be set at an

amount up to 133 percent of the State's AFDC payment level. As

interpreted by the regulations, individuals may, depending upon their

income or medical expenses, be required to "spend down" to the AFDC

eligibility level in order to receive Medicaid benefits.

The statute also specifies minimum benefit requirements_ For categorically eligible recipients and the optional groups subsumed under the

categorical program, the law mandates coverage of certain basic services,

including hospital, physician, laboratory and X-ray services, family planning~ and, for persons under 21, early and periodic screening,

diagnosis, and treatment services. Other services, such as clinic services,

prescription drugs, and physical therapy, may be provided at State option. For medically needy recipients, the State may either provide the

mandatory service package or develop a different package consisting of at

least seven of any federally reimbursable services. Regardless of whether a service is mandatory or optional, however, the

State is free by statute and regulation to limit the amount, duration, and

scope of coverage? In addition, the State may establish "nominal" cost- sharing requirements for any optional service to the categorically eligible

and for all services to the medically needy. The requirement that States provide early and periodic screening,

diagnosis, and treatment (EPSDT) as a mandatory Medicaid service was

established by the 1967 Tide XIX Amendments, which were part of a

larger package of broad-ranging am.endircmts to the Social Security Act

programs_ Congress had become convinced that improving the health

status of children from low-income families would require preventive

3The only qualification of this policy is the regulatory requirement that coverage of a service must be

-sufficient to reasonably achieve its purpose?' (Title 42 C.F.R. Sect. 440.230 & 1979).

42 5 4
health services typically not available under the existing Medicaid

program. The legislative directive was vague, however, and the design as well as

the implementation of EPSDT was left to the Department of Health, Education, and Welfare (DHEW).3 Agency regulations prescribed that, in addition to the services covered by a State's Medicaid plan, EPSDT

treatment services must include certain types of visual, hearing, and dental care. Also required is a specific screening package that must be available

to all eligible children in accordance with the State-established schedule

for periodic rescreening. New functional responsibilities mandated by DHEW further distinguish EPSDT from the general Meat aid program. Whereas Medicaid operates primarily as a vendor payment program for medical services, EPSDT

regulations require States to provide or purcha_ l... the care and services necessary for identifying eligibie children, informing them of the EPSDT

program, and assuring that needed preventive and curative services are provided.. To meet these requirements, States are authorized to contract with local organizations to provide required medical or support services, enter into EPSDT provider agreements, and set separate reimbursement rates for a required set of screening and diagnostic services. In 1972, Congress, concerned over the States' sluggish implementation of EPSDT, amended Title IVA of the Social Security Act to include a penalty provision that would reduce a State's AFDC grant by 1 percent for each quarter in which it was not in compliance with certain EPSDT

requirements.. The law specifies that this sanction is to be imposed against any State that fails to inform all AFDC recipients about EPSDT, pro-v.16 . aad arrange for screening when requested, and arrange for necessary

corrective treatment. Regulations base compliance on measurable out- come criteria, such as the percentage of children for whom screening and

initial treatment have been completed during a specified time period. Federal administrative responsibility for the Medicaid Program rests with the Health Care Financing Administration (HCFA) within the Department of Health and Human Services (DHHS). Administration of EPSDT is the special responsibility of HCFA's Office of Child Health

(ocr-p. All States but Arizona operate a Medicaid program. In most States, the administering agency is either a health or welfare department, or an

umbrella human services agency. To meet EPSDT requirements, however, a State Medicaid agency may amign responsibility for various functions, including outreach, screening, diagnosis, treatment, case manageznent, and transportation, to other departments within the State government. These agencies, in turn, may subcontract with local organizations to

provide the required ser..-ices. Medicaid is financed jointly by State and Federal funds, with the

current Federal contribution to the cost of medical services ranging from

50 to 77.55 percent, depending on the average per capita income of State

residents. In FY 1979, State and Federal Medicaid expenditures were just under $21.4 billion; the Federal share was $12.1 billion and the State share

315A 1980, the Department a-Health, Education, and Welfare was divided haio two independent

departments: the Depermsent of Education and the Department of and Human Services43
was $93 billion. An estimated 2.14 million children were served by

EPSDT that year.4 Prior to the enactment of the Medicaid legislation, there were some

poor women and children who had access to limited clinic and other

health care services supported by Federal, State, and local funds. Millions,

however, depended upon the charity of public and private health

providers for needed health and medical care. Many were able to obtain

this care, but many others could not. For those eligible, the Medicaid

program has substantially eliminated the financial barrier to the most

costly health care services. Much evidence suggests that Medicaid has

exerted a significant positive impact on the use of medical services by

children from low-income families_ In fact, in simple quantitative terms,

poor children now use medical services about as often as do affluent

children.5 Moreover, the establishment of EPSDT has meant that other impediments to appropriate care are now being addressed, with the result that

many children who need medical services most are finatiy being brought

into the health care system. EPSDT is demonstrating that aggressive preventive strategiesoutreach, early diagnosis, and followup for treatmentare effective, and indeed essential, to improving the health of the

Nation's poor children. Meeting the objectives of EPSDT requires the marshaling of various health, mental health, social service, and other resources. Federal

leadership is imperative, and the Department's recent efforts to design and

implement a major "Child Health Strategy" are promoting improved

coordination among all the programs having an impact upon child health.

As part of this initiative, schools and school-based programs are being

used to provide outreach and referral, Head Start children are moving

toward full participation in EPSDT, and the Public Health Service (PHS)

programs increasingly are obtaining reimbursement under Medicaid.

BASIS FOR RECOMMENDATIONS

Despite intensified Federal and State efforts to improve the administration of Medicaid and EPSDT, wher programs are judged by the

extent to which they assure children and pregnant women access to

appropriate health care the results are disappointing. The failure of Medicaid and EPSDT to reach their full potential is

largely attributable to the basic Federal statutory scheme under which

they operate_ The legislation allows States extensive autonomy in setting

benefit, eligibility, and provider participation policies. It requires the strict

This number inzhides only children receiving EPSDT assessment services within the year. DHHS

estimates that including children with up-to-date assessments who did not require an assessment in that

year would raise the total number of children reached by the program substantially.

Comparable figures for the number of children and pregnant women served by the general Medicaid

program are not availablo% r....ihough Medicaid beneficiaries under age 21 received 10.7 million visits or

servi-.-a.. the expendirires for winch totaled approximately S4 billion.

5See. for example. Butler. J. A. and R. K. Scotch. -Medicaid and Children: Some Recent Lessons and

Reasonable Next S:cps.'" Public Policy 26: 6, and table 2. Winter 1978.

44
application of categorical and income standards in determining individual eligibility. And, perhaps most important, it relies on State financing

initiative while offering little 'incentive for providing comprehensive

service coverage or for assuring effective outreach and referral. In fact, States doing a good job are faced with the greatest marginal expenditures. Of major concern to the Panel is the fact that Federal statutory policies governing Medicaid eligibility are inadequate to assure that in each State all children and pregnant women from low-income families can partici- pate in Medicaid. Income eligibility standards vary considerably among States, ranging from a maximum annual income of $2,244 for a family of

four in Texas to $6,600 for a family of four in Hawaii. Even accounting for differences in cost of living, the eligibility level in Hawaii is set at an

income which is twice as high as in Texas.6 As a result of these income policies, nationwide an estimated 7 million children with family incomes at or below the federally defined poverty level are excluded from receiving Medicaid benefits.'

In addition, many States choose not to extend coverage to optional groups. Only 31 States cover first time pregnant women, only 30 cover

families in which the father is unemployed, and only 20 provide benefits to all children of two-parent families which meet the AFDC income

standard. Only 33 States provide benefits to the medically needy, and a number of Statesstriving to contain rising Medicaid expendituresare

either reducing the income eligibility level for these benefits or not raising

the level to keep pace with inflation. Many States also impose residency

requirements that limit or exclude participation by migrant families. Moreover, certain categories cif children, such as the children who are

inmates of nonmedical public institutions, are outside the scope of the Medicaid legislation itself. Even for children and pregnant women who do participate in the Medicaid program, continued eligibility is always precarious. The family structure may change or family income may increase. Loss of eligibility often means that necessary treatment services are disrupted. One report showed that in the course of a single year, no less than 35 percent of EPSDT children lost eligibility for Medicaid.s The Panel is also concerned that current Medicaid policy does not assure coverage of essential health services for children and pregnant women. For example, many States restrict coverage for prenatal care to

fewer than the 13 visits recommended as a minimum by the American College of Obstetricians and Gynecologists. Many also place arbitrary

limits on the number of physician visits and outpatient hospital visits by children. In addition, the majority of States either do not cover the

optional diagnostic and treatment services that may be indicated as a

result of an EPSDT screening, or they limit coverage of these services to

'Based on 1975 cost-of-living data from the Census Bureau. Household Income Division.

7114edsand-Medirare Manageznent institute (1141V1M1). Data on the Medicaid Program: EligibilitY. Services, Expenditure& Public:anon Number HCFA 79-20005, Baltimore. NW.: DHEW, Health Care

Financing Administration. 1979 (Revisal).

Sauldren's Defense F. EPSDT: Does It Spell Health Care for Poor Children? Washingusi.

Washington Research Project, Luc-. I977. P. 31.

45
less than is needed. This is especially true for physical, speech, and

occupational therapy, prescription drugs, prosthetic devices, and mental

health treatment services. The bias against reimbursing for outpatient

psychiatric care is particularly strong. A serious problem for handicapped children is that some States disallow

Medicaid reimbursement for health services that are provided as part of

an Individualized Education Program (MP) required by the Education for

All Handicapped Children Act, P.L. 94-142, even though the services are

included in the State's Medicaid Plan and delivered by a certified provider

to a Medicaid-eligthle child. In these States, handicapped children

actually are losing entitlement to Medicaid-covered services as States shift

fiscal responsibility from one agency to another .9

Another aspect of inadequate service coverage is patient cost sharing, operative in many States. As permitted by statute, 15 States require deductibles, coinsurance, or copayments for optional services to the

categorically needy or for all services to the medically needy. Evidence

available to the Panel strongly suggests that these policies present an

economic barrier to care for the poorest participants. At the same time,

they increase administrative costs substantially and generally do not

reduce inappropriate service utiliz'ation.i°

The shortage of participating providers, especially of those able to

assure the comprehensiveness and continuity of care that Panel

believes is _essential, also limits access to appropriate health care. Private

physicians, particularly obstetricians and family practitioners, often refuse

to accept Medicaid patients because of extensive paperwork, delayed

payment, racial and class prejudice, and particularly because of low

reimbursement. As has been well documented, Medicaid usually reim- burses private physicians at a rate below that provided by private

insurers) Medicaid reimbursement policies pose special problems for health

maintenance organizations (HMOs) and for clinics, including hospital

outpatient departments, Community Health Centers, maternal and infant

care projects, public health departments, and crippled children's service

programs. Most States have not established capitation reimbursement for

health maintenance organizations and many do not provide coverage for clinic services. As a result, they often exclude important providers of

compruhensive care. Further, if HMOs and clinics are reimbursed for feefor-service physician care, they usually receive an amount considerably

below their cost.

Care rendered by nonphysician personnel, such as nurse practitioners

and nurse midwives, is not covered at all in most States, even when it is

provided in a clinic or HMO setting. Reimbursement for psychiatric social

workers and clinical psychologists providing mental health treatment

'As esscuased in chapter 5 of this volume. insufficient funding under P.L. 94-142 makes it impossible for

local education agencies to absorb the total costof health and other educatior=lly related services.

Roesner. NIL "Co-payments for Ambulatory Care: Penny-Wise and Pound-Foolish.- Medical Care 13:

457. June 1975.

"Comptroller General of the United Staten. General AccountingOffice. Better Management and More

Resoarces Needed to Sumach.= Federal Efforts to hnprove Pregnancy Outcome: Report to Cowes=

Washington, D.C.: U.S. Government Printing Office, 1980.

46 rz; 8
services in a Community Mental Health Center or other organized care setting is even rarer. The effect of these policies is to force health care institutions either to forego Medicaid payment for these services, or to obtain payment by billing for reimbursement as a physician visit. The Panel believes that in addition to the restrictive eligibility, benefit, and provider reimbursement policies adopted by the States, insufficient administrative capacity has limited the success of Medicaid and especially the EPSDT program. State Medicaid agencies generally received EPSDT with confusion and even disinterest Many were inexperienced in assuring the availability and quality of health care services, and most were totally

unaccustomed to seeking out beneficiaries and assisting them in arranging for the delivery of services. In many cases, State agencies have not done enough to overcome these

initial argmiTlictrative problems and have not adequately assumed respon- sibility for assuring that the goals of the EPSDT program are achieved. Nationally, only a small percentage of the children eligible for EPSDT have been screened because most States have not been aggressive in providing outreach, especially community-based outreach and other methods known to be effective. Also, a large number of the screenings that children do receive are incomplete, primarily because most States have failed to ensure that even the required screening package is provided. In addition, many of the medical problems identified through screening procedures are not treated because States have failed to provide the necessary followup.12 State administering agencies generally have not taken measures to

assure the availability and appropriateness of EPSDT providers. Commu- nity health centers and other comprehensive care providers frequently are overlooked when States enter into EPSDT provider agreements. More- over, several States use EPSDT providers, such as public health depart- ment clinics, which are not always affective in linking children with ongoing sources of primary care. States also have not assured that enough medical specialists to treat problems detected through screenings are participating in Medicaid_ The record of the Federal Government in &ministering EPSDT has also been poor. From the outset, program regulations have been slow to

emerge from the Department. The first set of regulations to implement EPSDT was issued by DHEW in late 1971, after a 4-year delay, i3 and did

not take effect until 1973_ Although regulations establishirig a mandatory screening package have been issued recently, Federal guidelines for assuring the quality of these services still are insufficient The regulations require a hearing examination, for example, but provide no guidance regarding the scope of the examination.14 Furthermore, until very recently,

12Cluldren's Defense Fund. RPM:in DOOR It Spell Health Care for Poor Children? Washington, DC.: Washingtos Research Project. Inc.. 1977, p. 31_

t3One hictor which prompted the reimue of the regulations was the ingitillitiOn of a Lawsuit, National

Welfare Rita Organization v. Richardson, brought on behalf of Medicaid beneficiaries_

"The Pane: ctoes not mean to imply that the Federal Govermnent should regulate medicalpractice. but rather that it shook]. require that standards established by recognized authorities, such as the American

Academy of Pediatrics, be met by providers receivn' S public funds for the provision ofhealth care services.

5 9 47
Federal reporting requirements for the States were concerned primarily

with the State expendituresfor services, and were not designed to yield the

most basic information about the populations served and the services

rendered.°

PLAN OF ACTION

Based on its analysis of the current Medicaid program, the Panel calls

for changes that it believes will establish a more equitable and effective

health program for low-income childrenand pregnant womenone which

will assure financial accessibility to high-quality, comprehensive care

nationwide. The Panel recommends:

setting eligibility standards at the federally established poverty

level, without regard to family structure

requiring coverage ofall essential services

bringing comprehensive health care providers into the program

and guaranteeing them reasonable terms ofparticipation

establishing standards for preventive services and certified providers

improving State administration of the program through fiscal

incentives and other mechitriicm.s

Implementing the Panel's recommendations will require maj-Ir statutory

revisions as well as modifications in regulatory policy and expansion of

administrative efforts. At the time of this writing, many of the statutory

proposals advocated by the Panel are contained in legislation before

Congress.16 Many of these proposals are similar to its own and, to the

extent that they are, the Panel fully endorsesthem.

Creating Uniform Eligibility

Central to a new legislative basis for Medicaid are changes in the

policies governing eligibility. The Panel concludes that Federal law must

assure Medicaid eligibility to all children up to the age of 18 and to all

pregnant women whose adjusted family income is at or below the

federally established national poverty income standard." In addition,

since a significant number of States presently include individuals with

family incomes above the poverty level in their medically needy programs,

the law should prohibit States from eliminating or in any way reducing

benefits to current Medicaid recipients. The law also should mandate

eligibility for children who are inmates of public institutions, providing

"See. for example. Reis. 3. et AL An Asset of the Validity of the Demonstration and Evaluation

Program for theEPWT Program: A laletaevahmedon. Evanston. 111.1 Northwestern Universiv. Center for

Health Services and Policy Research. 1979-

16US. Senate 1204. Chad Health Asseramen Act of 1979: U.S. House of Reprove:natives 49612, Chid

Health Amman= Act of 1979.

nAt the time of this writing. the national poverty level set by the Depsrtment of Commerce was 68,000

per year for a faniay of four48 6 0
they were eligible prior to entering the facility. To minimize disruption in

care, eligibility for children and pregnant women should be retained for 1 year following a completed health assessment, regardless of changes in

income_

The Panel recommends further that existing provisions which serve to

restrict participation by current or potential beneficiaries be eliminated. States, for example, should no longer be able to impose intent of residency or other requirements that would effectively exclude individuals otherwise

eligible for Medicaid from receiving benefits in any State.

Assuring Coverage for Essential Services

In order to assure coverage of all services essential to the health care of children and pregnant women, the Panel recommends that States be

statutorily mandated to provide coverage for the following services in

addition to those already required. For Children:

comprehensive child health assessmen.s, including health history, general physical examination, developmental assessment, nutritional assessment, and all appropriate laboratory tests and X-rays immunizations

diagnosis and treatment of vision and hearing problems

routine dental care, including preventive, restorative, and emergency services and noncosmetic orthodontia prescription drugs, eyeglasses, hearing aids, and prosthetic devices physical, speech and occupational therapy mental health services, including outpatient therapy, day treat- ment, residential treatment, and emergency inpatient services

residential treatment services for the mentally retarded

clinic services

For Pregnant Women: comprehensive prenatal health assessments, including health

history, physical examinations, appropriate laboratory tests, and

screening and counseling for nutritional inadequacy, substance

abuse, and other behavior patterns harmful to fetal development services to manage high-risk pregnancies

regular prenatal examinations prescription drugs

preventive, restorative, and emergency dental services mental health services, including outpatient therapy, day treat- ment, and emergency inpatient services pregnancy-related hospital admissions

labor and delivery care and services clinic services

postpartum examin. ations including, as appropriate and desired by

the beneficiary, family planning services Although several of these servicesparticularly the child health

assessments, immunizations, and certain visual, hearing, and dental

49
servicesare currently required by regulation, the Panel believes that

coverage for the full component of essential preventive, diagnostic, and

treatment services should be guaranteed and protected by congressional

mandate.

The legislation should stipulate that these services, plus the currently

required physician and hospital services, cannot be Limited in amount,

duration or scope, provided they are medically accessary. It also should

prohibit the establishment of patient cost sharing requirements. To clarify

the use of Medicaid funds as first dollar coverage, the legislation should

specify that any Medicaid-covered health service provided to a handicapped child as part of an Individualized Education Program under P.L.

94-142 must be reimbursable.

Encouraging Provider Participation

The Panel also proposes legislative amendments to encourage participation of all appropriate health care providers, including several provisions

which would place requirements on the States. First, the Pftnel urges that

States be required to reimburse all qualified child health care providers

who agree to perform comprehensive child health assessments, provide

immunizations, and make all reasonable referral and followup arrangements to assure the provision of indicated diagnostic and treatment

services. States also should be required to reimburse all qualified providers

of comprehensive prenatal, maternity, and postnatal care. Among the

kinds of providers that should be eligible to provide both types ofservices

are private physicians, public health departments, Community Health

Centers, HMOs, and hospital outpatient departments.

Second, the Panel recommends that States be required to reimburse all

qualified providers of diagnostic and treatment services covered by

Medicaid_ Such providers should include, among others, Community

1-1.4-:..1th Centers, Community Mental Health Centers, crippled children's

cl-r. cs, and private medical and dental specialists.

Third, the Panel recommends that services provided by nurse practitioners, nurse midwives, physicians' assistants, medical and psychiatric

social workers, clinical psychologists, and other qualified health professionals be reimbursed when delivered in an organized health or mental

health care setting. The Panel has decided not to recommend that these

services be reimbursed under a direct billing arrangement because it

believes alternatives to fee-for-service reimbursement should be developed

and is opposed, therefore, to any significant expansion of fee-for-service

reimbursement

Other recommendations for expanding provider participation would

establish legislative directives to the Secretary of Health and Human

Services. The Panel believes that Congress should require the Secretary to

establish minimum allowable reimbursement rates for ambulatory care

provided by individual practitioners and clinics. These rates should be

sufficient to assure an adequate supply of ambulatory care providers to

meet the needs of children and pregnant women and, as appropriate,

SO 4";.)

+16-
should be set at an amount not less than 80 percent of the Medicare rate for comparable services)*

In addition, financial incentives to promote continuity of care should be

authorized by Congress and implemented by the Secretary. These should

include reimbursement to cover referral, followup, and reporting costs

incurred by participating providers. They also should include capitation payments for continuing care providers, that is, providers who agree to deliver basic primary and preventive care on an ongoing basis to specific children or pregnant women with their consent. Providers participating

under this contractual arrangement should be required to be reasonably accessible to patients at all times and to assume responsibility for the management of the patient's comprehensive health and medical care needs, including the arrangement of all necessary diagnostic and treat- ment services.

Financing State Programs

Also recommended by the Panel are major revisions in the statutory

provisions governing Federal financial participation. In essence, the Panel is advocating a restructuring of Federal matching requirements to

encourage and reward improvements in State Medicaid programs. The Panel proposes that the Federal matching rate for ambulatory

services to all Medicaid-eligible children and pregnant women be increased by adding up to 25 percentage points to the States' current matching rate, up to a maximum of 90 percent, varied according to

performance criteria to be set by regulation. Within these limits, greater weight should be given for children and pregnantwomen enrolled with a continuing care provider. In addition, the Federal matching rate for outreach services'' should be increased to 75 percent. This rate should be provided to States regardless of whether the service is performed by a

community-based, private nonprofit agency or by a public agency- What is important, the Panel believes, is that the agency involve low-income people, familiar with neighborhood institutions and networks, as outreach workers. Special training in the requirements of Medicaid and in the medical and health resources of the community is essential. However, supervision by skilled medical personnel is not always necessary, and

should be eliminated as a legislative requirement for receiving the special Federal match for outreach services.

To receive these higher matching rates for any serviceambulatory, referral, or outreachStates should be required to maintain current financing levels and program requirements. Provision also should be made

for States that do even better than the mandated reasonable performance

111The Panel recognizes that in many States Medic, d payment levels currently equal 80 percent of Steam= rates for comparable services, such as pvirsian visits.. In making this recommendation the

lass= of the Panel is to aware that payment lamb 1,4 all States meet a reasonable minimum standard_

"As used here, the term outreach refers to intcaning beneficiary families of the EPSDT program, encenraging their participation, and making necessary transportation and support services arrangemenar.

53 51
level. In such instances, increases in the Federal share of administrative 

costs, up to 25 percentage points, should be permitted. 

Improving Program Administration 

Finally, the Panel r"commends that the Secretary be mandated to 

promulgate all regulations and 

to assure full 

pursue all administrative actions necessary 

ll implementation of this revised Medicaid program for 

children and pregnant women. In particular, the Panel proposes that the 

Secretary be directed to issue regulations addressing standard-setting., 

State plan requirements, and alternative approaches to fee-for-service 

reimbursement. 

New Regalatiasis 

Regulations establishing standards for the Medicaid and EPSDT 

programs should specify the minimum package of preventive, diagnostic, 

and treatment services to which children and pregnant women are 

entitled. They should set out tiaf... a,ppropriate scope or essential components of these services and should prescribe miran' iurn Federal requirements for an acceptable periodicity schedule for the delivery of these 

services. 

In order to promote consistent standards among the various Federal 

programs providing health services to children and pregnant women, the 

Panel believes it critical that these regulations be developed by HCFA in 

conjunction with other Federal agencies administering health programs 

for children and pregnant women, in particular the National Institute of 

Mental Health, the Federal 

agency administering WIC, and the Federal 

agency administering Title V. HCFA currently is working with PHS to 

develop mutually acceptable periodicity requirements, but much additional collaboration is needed. Standards for the nutritional component of the 

child health assessment, for example, should be consistent with the WIC 

(the Special Supplemental Food Program for Women, Infants, and 

Children) nutritional risk assessment so that a single procedure would 

fulfill the requirements of both programs. 

with 

State 

evel 

Medicaid agencies should, in turn, be charged by these regulations 

doping a more specific set of service standards responsive to State 

and local conditions. Like the federally established standards, State 

service standards should be developed in cooperation with other agencies 

administering MCH progaras, particularly the State Title V, WIC, and 

mental health service agencies. Reimbursement mechanisms and other 

State policies should be established to assure that standards are met and 

are uniform among programs_ All State Medicaid agencies should be 

required to develop monitoring plans and to identify appropriate State or 

local organizations to assume responsibility for their implementation. 

Min vohene I. chapter 11 of this report. the Pand reconmsends that the Secretary of rifits establish * 

Maternal and Child Health Administration within the Public Health Service to add ter some and 

coon:Haase ant. health programs for children and pregnant 111,0111C11- If established. it Would be appropriate 

for this Administration to participate in the development of these standards. 

52 64 
Federal regulations concerning provider participation should follow a

similar approach. They should set forth minimum requirements that a

provider must meet in order to be certified as a general Medicaid provider, an EPSDT provider, or a continuing care provider. Such requirements

should mandate, for example, that child health assessment providers have written agreements with providers of certain diagnostic and treatment services. Within this framework, States should be directed to develop more

detailed provider standards, drawing upon the expertise of the appropriate State agencies and professional associations. Additionally. of course, State performance standards or requirements should be prescribed by Federal regulation. These requirements should

establish minimum performance levels in outreach, assessment, and

treatment services to Medicaid-eligible children and pregnant women. The State Medicaid plan, in the Panel's view, is a mechanism that can be used to effect significant program improvements. Regulatory policy prescribing the content of State plans must, therefore, be structured for

this purpose. The Panel recommends that current regulatory requirements be expanded to specify that, as a condition of approval, each State Plan must contain:

a description of provider availability in the State and a detailed

strategy for overcoming shortages a specific strategy for bringing continuing care providers into the

program

a plan for providing outreach and eliminating obstacles to

eligibility certification a strategy for resolving transportation, child care and other barriers to receiving needed services

the service and provider standards adopted by the State

a plan for monitoring and assuring the quality of care State Medicaid plans should be reviewed critically by the Secretary and

should not be approved unless they reflect adequate measures, in the Secretary's opinion, to achieve Federal Medicaid objectives. If a State plan is found to be deficient, members of the HCFA staff should enter

into negotiations with the State agency to work jointly on the development and implementation of a more effective plan. Regulations also should instruct State agencies to pursue prepayment contracts in addition to capitation payment for continuing care providers. Prepayment contracts should be used for the provision of EPSDT services where this type of financing ensures a more effective and efficient means of delivering a particular service. There are two types of situations in which prepayment for a health or medical service should be authorized. The first is where a discrete preventive service, which usually is not part of primary care provided in a physician's office, can be delivered quickly to

large numbers of children at a single site. Preventive dental services, hearing examinations, and visual testing provided in the schools, for example, would meet these requirements. The second situation is when a provider agrees to accept a certain number of referrals over the course of a year or other specified time period. Under this type of arrangement, a

therapist might provide group counseling sessions for emotionally disturbed teenagers, or an orthodontist might furnish braces to an agreedt. 53
upon number of children. States should be required to consider both types

of prepayment contracts as a means of both assuring accessibility to

preventive and other essential services and of reducing service costs. The

Panel believes that States will be able to pay less on a negotiated group

rate than they would if providers were to bill for each patient on a fee-forservice basis. Additionally, States should be directed to enter into prepayment

contracts, whenever possible, for the delivery of outreach services. For this

type of service the prepayment contract should operate much like a grant,

and it might be appropriate for the State agency to issue a public request

for proposals and also to solicit applications from specific community

agencies already involved in successful outreach efforts.

Other Administrative Actions

Beyond promulgating regulations, the Panel believes that other steps are

necessary to improve the administration of the Medicaid prow- am. For

one, the Panel recommends that HCFA undertake an active review and

monitoring of State programs. Monitoring would be especially necessary

to determine whether States were meeting new performance requirements

and warranted the proposed increased Federal match. For another, the

Panel suggests that demonstration project and research funds be used to

develop knowledge about attracting and reimbursing continuing care

providers, effective delivery of outreach, and appropriate followup and

tracking systems. Finally, the Panel believes there is need for a considerable expansion of

technical assistance to the States, particularly concerning outreach,

followup, provider participation, and data collection responsibilities.

HCFA should, for example, move quickly to institute the new Medicaid

reporting system. This system, known as the Quarterly Child Health

Status Report, for the first time requires States to furnish information

about Medicaid beneficiaries and the ser .4!4 they receive. States

undoubtedly will require assistance in dc-vt ing the management

capability to meet these new requirements.

BIBLIOGRAPHY

Butler. J. A. and R_ K.. Scoter+. -Medicaid and Children: Some Recent L.essons and Reasonable Next

Steps.- Public Pobcy voi 26. Winter 1978.

Children's Defense Fund.. EPSDT: Does It Spell Health Care for Poor Children? Washington. D.C.:

Washington Research Project. Inc.. 1977.

C.omperollex General of the United States. General Accounting Office. Better Management and More

Resources Needed to Strengthen Federal Efforer to Improve Pregnancy Outcome. Report to Congress.

Washington. D.C.: U.S. General Accounting Office. 1980.

Dallek. G. Health Care forCalifornia's Poor: Separate and Unequal. Santa Monica. CaL: National Health

Law Program. Inc- 1979.

Foltz, A. M. 'The Development of Ambiguous Federal Policy: Early and Periodic Screening. Diagnosis

and Treatment (F-PSDT).- Milbank Memorial Fund Quarterly: Health and Society vol. 53. Winter

1975.

Foltz. A. M. and D. Brown. 'State Response to Federal Pobcy: Children. EPSDT. and the Medicaid

Muddle." Medical Care 13(8). 1975-

54
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S. I I r -11, 1 r, Orr 1
(known generally as the WIC program) as an amendment to the Child

Nutrition Act of 1966. Under its present structurz, WIC provides

nutritious food and nutrition education to low-income pregnant, postpartum, and lactating women, infants, and children to the age of 5 who are

determined to be at a special nutritional risk- Participation in other food

programs does not preclude participation in WIC;

The congressional purpose in enacting the WIC program was clearly

both preventive and therapeutic. Unlike other supplemental food pre--

grams, WIC was designed to establish a riew, special relationship between

nutrition and health care services. The legation states that the program

is to " serve as an adjunct to good health care, during critical times of

growth and development " In an attempt to accomplish this goal,

Federal regulations mandate that local agencies may qiiAlify as WIC

sponsors only if they can make health care services available to WIC

errollees. These statutory and regulatory provisions make WIC the first

fo..c1 assistance program to tic eligibility to nutritional need and to require

access to the provision of health care services.

Eligibility in the WIC program is based upon two criteria: nutritional

risk and income. The statute defines "nutritional risk" to include four

categories of people, ranging from those with documented nutritionally

related medic- I conditions to individuals with dietary deficiencies that

impair or endanyr health. The determination of an applicant's nutritional

status must be I ade by a physician or other competent professional

authority. The law states that the income requirement can be fulfilled only

by persons who meet the income standards prescribed for free and

reduced-price school meals under the National School Lunch Act. Once

an applicant has been accepted into the program, periodic recertification

is required to a.,sure that he or she continues to meet both the nutrition

and income eligibility criteria. The W program consists of two services provided to participants at

no cost. The first, of course, is food distribution. The Department of

each of which Agriculture (USDA) has authorized several food packages,

must be prescribed under professional guidance to reflect individual

nutritional needs. Food packages are made available to participants

through vouchers, by direct distribution, or by home delivery. The

program's second service is nutrition education. Federal regulations

require that nutrition education activities emphasize the relationship

between proper nutrition and good health, and assist WIC participants to

achieve positive changes in their eating habits. In addition, the regulations

specify that State agencies must employ at least one professionally trained

nutritionist or dietician to be responsible for plitining and implementing

nutrition education activities throughout the State, and for ensuring that

local agencies properly carry out the program's nutrition education

service. WIC also provides access to health services for its participants. As

defined by Federal regulations, these services include ongoing, routine

Abe sole 4=tception is the Commodity Supplemental Food program_ Because the two programs are

identical except for their food delivery mechanisms, partiCiparion is limited to ooe orthe other.

58 6 9
obstetric care, incluoing examination of women during the prenatal and

postpartum periods, and pediatric care of infants and children.. The WIC

legislation does not require WIC participants to receive such services, but regulations dictate tha: local agencies must assure the availability of health services to WIC beneficiaries. Indeed, no agency can be authorized

as a WIC sponsor unless it can provide these services either directly or by

referraL

WIC is administered federally by the Food and Nutrition Service (FNS) of the Department of Agriculture. Within FNS, the Supplemental Food Programs Division and the regional offices are responsible for program

administration_ At the State level, WIC is administered by health agencies

in the 50 States, the District of Columbia, Puerto Rico, and the Virgin

Islands, and by 29 Indian Tribal Councils that function like State

agencies. Federal regulations state that local WIC programs may be administered by any health, welfare, or private nonpr :. agency meeting the statutory

requirements, but preference must be given to public or private nonprofit health clinics. In practice, the overwhelming majority of authorized

agencies-6,585are health clinics, but 1,280 are welfare programs and

community action program (CAP) agencies which subcontract the

provision of health services. FNS allocates funds to State agencies based on formulas developed by

the Secretary of Agriculture. The formula for distributing the food grant is designed to reflect a combination of relative infant mortality rates and

percentages of infants and children under age 5 who fall at or below 200

percent of the federally defined poverty level. A separate formula for the administrative grant is based on the amount the State is allocated for its

food grant, the incidence of rural births in the State, and the salary levels of State and local employees. Receipt of these grants is conditioned upon

an approved State plan. States, in turn, are statutorily required to distribute Federal funds in

accordance with an affirmative action plan that places WIC services in

areas that have greatest need. In FY 1980, WIC funds apportioned to local agencies served approximately 2.1 million people. Despite early frustrations caused by the impoundment of funds and a

lack of aggressive administration, as well as the necessity for litigation, WIC enjoys the overwhelming support of Congress, health providers, and nutrition advocates. Their enthusiasm is best illustrated by the dramatic

rise in funding throughout the program's history. Congress first authorized WIC as a 2-year pilot program with a total appropriation of $40 million

for 1973 and 1974. In 1975, when the program had finally gained a

foothold and was serving some 500,000 people, Congress reauthorized it for another 3 years, increasing the annual budget ceiling to $250 million. Congress extended the program again in 1978 and provided for annual budget increases. The FY 1980 budget was $758 million; the projected

appropriation for FY 1981 is $900 million. The Panel believes that the WIC program has been successful in

providing food and making health services available to those in r mi. A

series of preliminary reports appears to substantiate this view. rits.rnte

59
some methodological problems, these studies also seem to indicate that

WIC is helping to prevent health problems and to improve the health

status of its participants. For example, an initial study sponsored by the University of North

Carolina School of Public Healthy cites evidence of a positive correlation

between food and health services made available through WIC, and

improvements in nutrition and health status. For infants and children,

participation wa_s associated with an acceleration of growth in weight and

height, an increase in mean hemoglobin values, and a reduction in the

prevalence of anemia. For women, participation was associated wi %Li an

increased weight gain during prec.-g..incy, an increase in the birth weight of

their babies, an increase in mean hemoglobin c, rIitcentrations, and 4

decrease in the prevalence of anemia. A major nutrition surveillance study

completed by the Center for Disease Control in 1977 relates similar

findings -4 Recent studies tend to corroborate these positive conclusions. A 1979

study conducted at the Harvard School of Public Healthy in four

Massachusetts WIC clinics, for example, found that the incidence oflow

birth weight among infants whose mothers participated in the program

during the prenatal period was markedly less than among infants whose

mothers, although eligible, did not participate. This reduction in the

number of low-birth-weight infants produced an additional benefit: a

decrease in costs associated with hospitAition. Each dollar spent in the

prenatal components of the WIC program resulted in a $3 reduction in

hospitalization costs. This was due to the fact that the number of lowbirth-weight infants who had required hospitalization was significantly

lower for those whose mothers participated in WIC than those whose

mothers did not.

Further evidence supports the Panel's belief that WIC acts as an

adjunct to good health care during critical stages of growth and

development, drawing infants, children, and pregnant women into the

health care system and promoting the utilization of essential health

services. A study sponsored by USDA and conducted by the Urban

Institute in 19766 indicates that WIC participation increases the use of

health care services. It brings women into health clinics for earlier and

more frequent prenatal visits and it increases the number of well-child

clinic visits. The Panel is convinced that, by making essential health care

services available, WIC is having a beneficial impact upon the health

status of the women, infants, and children the program serves.

3Endazica. J. C. et al. Medical Evaluation of the Supplemental FoodProgram for Women. Infants. and

Children. Chapel Hill: University of NorthCarolina.. School of Public Health. 1976.

4US. Depirtment of Agricu/ture. Food and Nutrition Service. CDCAnalysis of Nutritional Indices for

Selected WIC Participants. Prepared under contractwith the U.S. Department of Health. Education. and

Welfare. Center for Disease Control. June 1978.

SICennedy. E. T. et aL Evaluation of the Effects of the WIC Program on Prenatal Patients in

Massachusetts. Cambridge. Mass.: Harvard University, School of Public Health. March 1979.

68endick, M.. Jr. et al. Toward Eiric.,:scy and Effectiveness in the WIC Delivery System. Washington.

D.C.: The Urban Institute, 1976.

60
BASIS FOR RECOMMENDATIONS

Despite the WIC program's substantial accomplishments in the past several years, the Panel recognizes that it has not yet reached its full potential. As presently structured, WIC is not available to a significant percentage of those who need it. About 9.1 million women, infants, and children7 are

financially eligible for WIC benefits, but only 2.1 million are now served by the program. While eligibility is also dependent upon nutritional risk, the high correlation between poverty and lowered nutritional status would

suggest that many people who qualify by income criteria probably also

have nutritional needs for WIC benefits. Recent USDA figures also indicate the inadequacy of coverage geographically. Currently, 730 of the Nation's 3,042 counties remain without WIC programs. Almost 200 eligible health clinics have petitioned

for WIC sponsorship, but potential clients continue to go unserved while

these clinics await action on their applications. The Panel attributes these gaps in coverage to two overriding problems. The first is an absence of health resources needed to fulfill the health

services requirement of the WIC legislation. A WIC spcnsor must be able

to provide health care services to its enrollees either directly or through

referral in order to for funds. But many areas without a WIC

program probably are classified as "medically underserved" by the Department of Health and Human Services and thus may not be able to

comply with the health services standard. Even where health services are available, potential WIC sponsors may be disregarded. In some areas, State health agencies fund only district or

local health departments, ignoring other health or community agencies

that could become WIC sponsors. Community Health Centers, for

example, are often overlooked by administering health agencies. Current figures indicate that more than 30 percent of the Nation's Community Health Centers do not provide WIC services either directly or by referral. The second problem is the present level of fw-tding. Many areas have gone without WIC programseven where health care services are

availablebecause of inadequate funding. In addition, a signif:mnt number of WIC sponsors are unable to provide services to all who qualify

Indeed, more than half of all WIC programs have recently requested

additional funds to meet the needs of their enrollees. These include 50,000 women, infants, and children whose names will remain on waiting lists, ranked according to medical priority, until supplementary funds become

available. The Panel is concerned that the net effect of insufficient funding

is to diminish WIC's preventive role and to move toward a restructuring of WIC as a therapeutic program. Thc. Panel believes that this trend should not continue if WIC is to reach its hill potential and remain the unique

supplementary food program that Congress u.t..-nded it to be.

7Figure provided by USDA. which bases its estimate on the number of women, infants. and children

whose family income is 200 percent bdow the Federal poverty level.

61 2
Even where WIC clinics provide adequate seiliaces, not all the infants,

children, and pregnant, postpartum, and lactating women who need them

take advantage of the programs' benefits. One reason for this is the

inability of some WIC sponsors to recruit a significant proportion of

potential WIC recipients. Just as important, however, 're the problems of

client accessparticularly lack of transportation, insufficient time or

money to travel to the clinic, the absence or the expense of child care, and

inconvenient clinic hours. Local programs may aggravate these problems

by instituting burdensome administrative -irocedures. For example, it is

not unusual for a WIC clinic to require 1.:.s participants to visit the clinic

once a month. Although necessary in some instances for Appropriate

followup, this rule frequently results in missed work and school time for

some beneficiaries because the vast majority of clinics are open only

during weekdays. Moreover, once participants arrive at the agency, they

often must wait more than an hour before receiving their food packages or

vouchers. While progress has been made in resolving these problems, such

difficulties still discourage some potential clients from enrolling in the

program and cause others to drop out. One other issue has a tremendous impact on WIC's accessibility to potential participants. USDA has not yet issued a final regulation to

implement the 1978 legislative amendment mandating that WIC income

eligibility requirements satisfy the standards for free and reduced-price

school meals under the National School Lunch Program. Those standards

are set at 125 percent of the poverty level for free meals and at 195 percent

of the poverty level for reduced-price meals. Current regulations merely

specify that recipients must meet an income standard provided or

approved by the State agency. These regulations, which in effect permit

WIC sponsors to adopt the same income guidelines used for health clinic

services, lead to serious discrepancies in access to WIC benefits. Local

sponsors in three States, for example, use income ceilings below 125

percent of the poverty level. At the other extreme, sponsors in 11 States

,end numerous Indian "State agencies" apply no income standard

whatsoever. The Paael is concerned that in many instances these criteria

serve to exclude or reduce program participation by low-income women,

infants, and children who are nutritionally at risk.

Beyond these fundamental issues of availability and accessibility are

problems relating to the program's basic operation. A recent report issued

by the General Accounting Offices suggests several factors that appear to

prevent the food distribution service from working optimally. First,

although Federal regulations require that the nutritional risk of each

applicant be determined through a medical or nutritional assessment by a

competent professional authority, some local clinics are not performing

these assessments. Further, the definition of "nutritional risk" varies from

State to State, resulting in considerable uncertainty and inconsistency in

establishing the nutritional status and eligibility of beneficiaries. Finally,

SComptroller General of the United States. The Special Supplemental Food Pr am for Women.

Infants. and Children (WIC)How Can it Work Better? Washington. D.C.: General Accounting Office,

1979.

62
some local agencies make only minimal attempts to modify food packages

that, based on professional assessments, would supply the kinds and

quantities of food needed to satisfy special nutritional requirements. In

some cases, appropliate food prescriptions cannot be made because nutritional assessments have not been performed; in others, WIC staff members have not received the professional advice they need to tailor a

specific food package to a particular enrollee's condition. The Panel is particularly concerned about the food prescription policies

regarding special formulas for infants and children with medically

diagnosed nutritional needs- In many situations, these Prinulas are

incorrectly prescribed_ In other cases, special formulas cannot be obtained

simply because the regulations make no provision for supplying them. Under current regulations, for example, the WIC prpgram does not offer formulas to children suffering from inborn errors of metabolism unless

they arc commercially available. While the number of children affected by

this policy is relatively small, the consequences to the child and his or her

family are enormous. These formulas may be the only way to compensate

for this kind of deficiency, yet they remain prohibitively expensive and

difficult to obtain for virtually every family whose child qualifies for WIC

benefits.

Additional problems impede the provision of health care services_ Even when WIC services are sponsored by health departments and clinics, some enrollees do not receive the health services to which they are entitled, often due to the lack of coordination between WIC and other maternal

and child health programs. For example, WIC, Title V, and the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program have not eitablislied a single comprehensive child health assessment which meets

the requirements of each program As a result, WIC beneficiaries usually must return to their clinics several times in order to receive the WIC

nutritional assessment, an EPSDT screening, and routine obstetric or pediatric care. They often must return on other days for treatment services. This process is enormously inconvenient for participants and, additionally, wasteful of scarce resources. The Panel recognizes that other factors also influence whether WIC

participants receive needed health services. A number of local health

departments and other WIC sponsors that provide health services simply do not have the capacity to serve all participants. In addition, health

services are sometimes offered only at a charge, making cost a barrier to

care for many of the poorest WIC beneficiaries- Those States that do not provide Medicaid coverage for women who are pregnant for the first time

effectively preclude them from receiving health services they need unless

they can pay clinic charges. Moreover, several clinics fail to make referrals or to do followups to assure that appropriate routine and specialized care

is furnished.

Also of concern to the Panel is the operation of the nutrition education

component of the program. Despite current regulatory requirements, this service has not received the priority it deserves and that Congress

intended. To date, FNS has not given the States enough guidance on the purpose and appropriate content of the nutrition education service_ The

63
guidance that States provide to local sponsors differs greatly, and as a

result, both the quantity and quality of nutrition education furnished by

WIC sponsors vary considerably from program to program.

In addition, two overriding problems affect all components of the WIC

program. Both monitoring procedures and technical assistance concerning

food distribution, nutrition education, and health care services remain

inadequate. With regard to monitoring, for example, State WIC agencies

need to make greater efforts to assure that local programs comply with

regulatory requirements and provide services that meet minimum quality

standards. In particular, State agencies should be monitoring vendors who

often allow substitutions for prescribed foods or overcharge for their

products. Unless measures are taken to incorporate adequate technical

assistance and monitoring procedures into the general program, the Panel

questions whether WIC will reach its optimal effectiveness.

PLAN OF ACTION

In making its specific recommendations regarding WIC, the Panel has

two major goals: first, to extend the availability of WIC benefits to all

those in need; and second, to strengthen the program's ability to improve

the health status of its participants. To achieve these goals, the Panel

proposes:increasing Federal funding for the WIC program

coordinating WIC program planning and service delivery with the

Title V program and other health programs serving infants,

children, and pregnant women

targeting WIC benefits to all infants, children, and pregnant,

postpartum.- and lactating women in both financial and nutritional

need expanding Federal and State monitoring and technical assistance

efforts

With the exception of the recommendation for increased Federal funding,

these recommendations can be carried out through modifications in

current regulatory and administrative policies.

Fundilyg for the WIC Program

Changes should start at the Federal level with an increase in

congressional appropriations for the WIC program. The Panel recommen gnat Congress continue its strong financial support of WIC by

allocating to the program an additional $150 million per year for the next

2 years. If inflation and food prices remain at their current levels, such an

increase would mean that the number of people able to participate in the

program during any month in each of the 2 years could be increased by

almost 400,000. The Panel also is recommending increases in appropriations for Title V and other health care programsincreases which it

believes would expand the availability of health services required under

the Federal regulations applicable to WIC- Collectively, these funding

64
increases would help to bring all WIC benefits to unserved and

underscrved areas.

Coordination of Services

To improve coordination between WIC and the Federal programs that provide and finance health services, the Panel proposes several remedial measures that touch nearly every administrative aspect of the program. These proposals are intended to strengthen WIC's ability to function as an

adjunct to good health care, to simplify and facilitate joint participation in WIC, Title V, Medicaid, and EPSDT, and additionally, to reduce

unnecessary duplication of servic s and administrative costs. The Panel recommends that USDA, in conjunction with the Federal agencies adminis_enng* the Title V and Medicaid programs, promulgate

regulations creating uniform standards and financing policies for all components of the WIC program intended specifically to affect the health

status of its participants. Minimum Federal standards should be established for the nutritional needs assessment, for food package prescrip-

,. tons particularly the commercially and noncortunercially available

'infant formulas, and for furnishing or arranging for the provision of health

care services. In addition, USDA should enter into financing agreements with the Federal Title V agency and with HCFA establishing that local Title V agencies, and other Medicaid certified health agencies serving as

WIC sponsors, will charge the cost of the nutritional needs assessment for Medicaid - eligible infants and children to EPSDT, and similarly, will charge Medicaid or EPSDT for the provision of health services to Medicaid-eligible women, infants, and children. These agreements should

become the basis for WIC regulations regarding Federal financing policy. To ensure effective implementation of these health service and

financing policies, USDA regulations must also set out State responsibilities for coordination. State agencies administering WIC should be

required, for example, to adopt the State Title V standards and procedures both for nutritional needs assessments and for providing or assuring the

availability of obstetric and pediatric services. In addition, WIC agencies should seek the advice and guidance of the Title V staff in setting

standards and procedures for tailoring food packages to the general nutritional requirements of the basic categories of WIC clients, and to the

individual nutritional requirements of those beneficiaries with special needs. And in at least one areathe provision of health servicesthe Panel recommends that the separate health department units administering the WIC and Title V programs be directed to develop and sign a memorandum of understanding regarding the availability of health care

services for WIC participants. Regulations also should require State agencies administering WIC to

develop an accounting procedure for the nutritional needs assessment that is compatible with those of the State Title V and Medicaid agencies. This accounting mechanism might be based on the staff time apportioned to each program or the ratio of participants eligible for the different programs. Assuming that uniform service standards are in place, it then

65
would be possible for WIC sponsors lo use Medicaid as first-cloilax

coverage for nutritional risk assessments as well as for health care services.

An additional proposal for improving coordination is to mandate that

State agencies establish new WIC programs and enlarge existing ones

according to an approved State plan for maternal and child health

services, provided that the plan meets WIC's statutory and regulatory

affirmative action mandates_ The Panel strongly recommends that this

plan be developed by the State Title V agency with the approval of the

State WIC agency. Integrating the planning processes for health and

nutritional services will assure the development of high quality WIC and

health care services in areas of greatest need, and will promote regional

arrangements in unders=rved areas. The Panel also 'Proposes that the WIC State agencies perform two

additional, interdependent functions that will further improve the healthrelated components of the WIC program: 1 irst, State agencies should

monitor on a quarterly basis all WIC sponsors to determine whether they

are in compliance with Federal and State requirements for screening, food

package prescriptions and prices, and health services availability; and

second, State agencies should provide technical assistance, as necessary, to

bring deficient programs in conformity with appropriate standards and

policies.

Additional Recommendations

Beyond initiatives aimed at achieving greater coordination and cooperation among the various health-related programs and between the State

and local agencies that administer them, USDA must take several other

steps in an attempt to expand and strengthen the WIC program Foremost

among these should be regulatory revisions that would target - WIC

benefits to all people in eligible categories who need WIC's services.

National Income Eligibility Stsaidard

The establishment by regulatioz of a nationwide income eligibility

standard for participation in the WIC program should be a top priority_

The Panel recommends that States be required to fix the incorae standard

between 125 percent and 195 percent of the federally defined poverty

level. to Such a standard will ensure that WIC benefits are targeted at

women, infants, and children from low- and moderate-income families_ At

the same time, it still will permit each State to exercise some flexibility in

selecting a specific standard to apply.

fthe Panel's recommendations for the broad plannicg responsabdities of the State Title V agencies are

described in detail in chapter 2 ofthis volume.

1°This is the same standard the Panel is recommending for States that elect to set income eligibility

ceilings for Title V health services. This standard would not apply to preventive and diagnostic services,

which the Panel believes should be available at no charge.

66

d.
Selection of WIC Sponsors

USDA also should promulgate regulations that will help ensure that health care services are available to all WIC participants. Under such

regulations, States should be required to obtain from each applicant agency a detailed analysis of its capacity to make health care services available to all WIC beneficiaries, either directly or through contractual agreements. To do this, the agencies may have to seek out services in the private sector, including practicing physicians, health maintenance organi- zations (HMOs), hospital outpatient departments, and nurse practitioner clinics. This process may also involve the evolution of more creative

arrangements, such as the use of a list of private physicians who, on a

rotating basis, are willing to provide health care services. State Title V staff members should be required to assist applicant agencies in

identifying these resources. The Panel believes that it is imperative that States give equal and

unbiased consideration to all agencies seeking WIC sponsorshipnot just health clinicsthat are capable of meeting WIC's requirements. Addition- ally, in some instances, candid:xtes should be considered even if they are unable to comply with all the health service requirements outlined here. For applicants from medically underserved areas, a temporary waiver of

the health service requirement should be permitted so that WIC

nutritional benefits can be made available. Such a waiver, however, would have to be approved at the State level and explained fully in the State plan. In any event, no applicant should be without a final means for redress; thus, the Panel maintains that all petitioners denied WIC

sponsorship should have the right to appeal at the Federal agency level.

Program Monitoring, Enforcement, and Technical Assistance

At the Federal level, greater attention should be given to WIC's monitoring activities in order to achieve the Panel's twin goals of expanding and enhancing the program. FNS should increase its oversight to assure that States award program funds according to an approved

affirmative action plan., develop nutrition education programs that can be

implemented locally, and ensure that WIC sponsors make health services available and meet all program requirements. In keeping with the Panel's desire to coordinate all health-related services, these efforts should be made in cooperation with other agencies, including the Federal agency

administering the Title V program. FNS also should be more aggressive in using its enforcement powers. Statutorily authorized sanctions should be applied to State WIC agencies

that do not comply with all USDA program requirements. Unless such

penalties are imposed, the Panel believes that agencies will have little, if any, incentive to meet Federal standards and guidelines. Finally, the Panel's plan for implementation calls for improvements in FNS technical assistance policies. WIC evaluations, along with other

research findings, should be disseminated to State and local program

67
41
P.L. 94-142:

THE EDUCATION FOR

ALL HANDICAPPED

CHILDREN ACT

MAJOR RECOMMENDATIONS

Clarify Federal policy regarding the children covered by the law

and the services they are to receive-

. Require that existing health and mental health agencies and

professionals, both public and private, be used to the maximum

extent possible in implementing the P.L. 94-142 mandates to

locate, identify, and evaluate children with handicapping conditions, and to deliver required health and mental health services. Assure that in-service training in the special needs of the

handicapped is made available to ed-4Aication and health personnel involved in identifying children with handicapping conditions, End in developing and implementing individualized education. program= for those children. Expand Federal and State monitoring, technical assistance, and

enforcement activities to ensure full compliance with the law. Assure that individualized education programs are based on

appropriate physical and mental health information and expertise and that the confidentiality of health End education records is maintained.

Bring Federal appropriations for PL. 94-142 up to the authorized

level

PROGRAM DESCRIPI'ION

AND ACCOMPLISHMENTS

The enactment of Public Law 94-142, the Education for All Handi- capped Children Act, in b15, marked the culmination of a "revolution"

in educational opportunities for handicapped children. The Act was

69 80.
passed in response to a growing recognition by the courts of the rights of handicapped children and the accompanying costs of providing them

needed services. The legislation modified the provision for State grant assistance under

Part B of the existing Education of the Handicapped Act' to require that "a free appropriate public education" be made available for all handicapped children aged 3-18 by September 1980 and aged 3-21 thereafter.2

The law applies to all handicapped children regardless of the severity of

their disabilities and their families' ability to pay forservices.

Covered by the Act are all children who are handicapped and who,

because of their impairments, require special education and related

services. They include children who are mentally retarded, hard of

hearing, deaf; speech impaired, visually handicapped, seriously emotionally disturbed, orthopedically impaired, other health impaired, or multihandicapped, as well as children with specific learning disabilities. For

children falling within any of these categories, States must provide both

individualized instruction designed to meet the child's special needs, and related or supportive services necessary for the child to benefit from the individualized instruction program

Related services include school health services, speech therapy, psychological services, physical and occupational therapy, counseling services, medic:Al services for diagnostic or evaluation purposes, and parent

counseling and training. The special education and related services are to

be furnished in accordance with a written individualized education

program (IEP) developed jointly by parents, teachers, and other appropriate individuals. To receive a Federal grant under the Act, States must comply with the

following conditions, even if they must increase State and local funding to

do so:3

States must locate, identify, and evaluate every handicapped child

within their jurisdictions (the "child find" system) and devise

methods for determining which children are not receiving needed

services to which they are entitled- Evaluations of handicapped children must be conducted in a

nondiscriminatory manner. Children must be placed in the least restrictive environment

consistent with their special needs.

3 Section 14C1 et seq. (1976 & Supp. 11 1978).

kinder limited circumstances. States are not 'required to make a free appropriate public education

available to children aged 3-5 and 18-21. Such is the case if (1) State law expressly prohibits or does not

authorize the expencaure of public funds to provide education to nonhandicapped children in any of these

age groups. or (2) the requirement is inconsistent with a court order which governs the provision of free

public education to handicapped children in that State.

31n addition to P.L. 94-142. recipients of Federal financial assistance must comply with Section 504 of

the Rchabibtation Act of 1973. This section prohibits those receiving 1-ederal funds from discrivnin441rig

against persc on the basis of their handicaps. Subpart 1) of the regulations implementing Section 504

provides cipients operatics public elementary and secondary school programs must ensure that

each child receives a free appropriate public education. Many of the specific requirements are similar to

those contained in the regulations implementing P.L. 94-142.

70
Parents must be given fundamental due process rights, including

an impartial hearing on any matter concerning the evaluation, placement, or provision of a free appropriate education for their children_

States must establish in-service train' ing for general and special educational, instructional, related services, and support personneL

States must afford all services and guarantee all rights to children

in private schools or facilities as well as to those in public schools. These requirements make P1._ 94-142 unique among Federal education

grant programs: while other programs also have detailed prerequisites on the use of Federal funds, P.L. 94-142 goes one step further by

guaranteeing certain rights to handicapped children and their parents without regard to the level of Federal spending_ P.L. 94-142 is administered federally by the Office of Special Education

(OSE) within the Office of Special Education and Rehabilitative Services

(OSERS)4 in the Department of Education. OSE is responsible for developing policy for the program, distributing grants to States, and

ensuring that States are properly and efficiently administering P.L. 94-142

funds. In addition to P.L. 94-142, OSE administers programs serving

handicapped children under P.L. 89-313 (education for disadvantaged

handicapped children in institutional settings) and coordinates policy with

a number of other Federal programs including several Social Security Act programs: Title V Maternal and Child Health, Title XX Social Services, and Title XIX Medicaid and EPSDT (Early and Periodic Screening, Diagnosis, and Treatment). At the State level, P.L. 94-142 is administered by a State educational agency (SEA). Although the State is charged with making available a free appropriate public education for every handicapped child, the SEA has overall responsibility for ensuring that P.L. 94-142 is properly implement- ed and administered. Congress established this line of responsibility

"... so that the failure to deliver services or the violation of the rights of handica children would be squarely the responsibility of one

agency. The SEA is responsible not only for distributing P.L. 94-142

funds to local educational agencies (LEAs), but also for supervising

educational programs for handicapped children in the State and ensuring

that they are in compliance with SEA education standards. The LEAs are responsible for designing and providing special education

and related services to handicapped children in accordance with the

requirements set forth in the Act. Responsibility for providing funds to satisfy the requirements of P.L. 94-142 is shared among the Federal, State, and local governments. Since 1978, the Federal portion has been determined by a State grant entitlement formula_ This formula is based on the number of handicapped

children aged 3-21 receiving a free public education in a State multiplied by a percentage of the nationwide average per pupil expenditure. This

413efore the establishment of the Department of Education. the Bureau of Education for the

Handicapped (3E111) was responsible for administering P.L.. 94-142.

51.T.S. Senate Report No. 168, 94th Congress, 1st Sermon. The Education for all Handicapped Children Act June 2, 1975.

71
percentage was 5 percent in FY 1978 and will increase to 40 percent in FY

1982. Although initial appropriations kept pace with this formula, recent

appropriations have fallen considerably behind. The advance appropriation for FY 1981 is $874.5 million, or only 40 percent cf the total Federal

contribution needed to meet the formula.

Some Federal funds are also available in the form of preschool incentive

grants, which are generated by double-counting the population of eligible

children aged 3-5 years in the State. They differ from the basic grant in

that States may retain or distribute incentive grant funds as they desire.

States tend to allocate the moneys as (1) State projects, (2) project grants

to local educational agencies, or (3) formula grants. In the academic year

1978-79, all States except New Mexico, Arizona, and Wyoming received

preschool grants., rich totalled $17.5 million nationwide.

In addition to these Federal funds, States may use any other available

Federal, State, local, and private sources of support to meet the

requirements of P.L. 94-142. Insurers and other third-party payers are not

relieved from any otherwise valid obligation to supply or pay for health

services providee to a handicapped child.

Early analyses of the program6 indicate that a strong beginning has

been made in meeting the needs of handicapped children. In 1979, 3.9

million children, approximately 75 percent of the Nation's handicapped

school-age population, were receiving a free appropriate public education.

By comparison, in 1966, before the enactment of any Federal legislation

on behalf of handicapped children, only 12 to 1.8 million children were

being served. In the last 2 years alone, 230,000 children have been

identified as needing the services provided through PI.- 94-142. Moreover, there has been a 10 percent increase over the last 3 years in the

number of preschool handicapped children aged 3-5 receiving special

education. These studies also show that as a result of P.L. 94-142, physical therapy,

occupational therapy, adaptive physical education, and special transportation have become available at no cost to parents ofhandicapped children.

In addition, the Act is credited with increasing by 40 percent the number

of previously institutionalized children served by local schoolssince 1975.

In light of its overall concern with the planning and coordination of

programs affecting maternal and child health, the Panel notes that on

another front the Act has made progressthat merits attention.

The Federal Government supports nearly 130 different programs for

handicapped citizens, a number of which are relevant to the operation of

94-142, including Title V's Maternal and Child Health and Crippled

Children's Services (administered under the Bureau of Community Health

Services), the Disabled Children's Program (aerninictered under the

Bureau of Community Health Services), Medicaid's Early an Periodic

Screening, Diagnosis, and Treatment program (administered by the

Health Care Financing Administration), Intermediate Care Facilities for

6To date, the evaluation of P.L. 94-142 has been extranely limited, in part became the law has been in

effect only 3 years. A January 1979 report prepared by the Bureau of Education for the Handicapped, a

subsequent update (August 1979). and a 1980 Congressional Research Service report arethe major reviews

available. Both sources focus on compliance issueswho is being served. at what cost. and with what

services. No national evaluation of program outcomesis yet available.

72

83
the Mentally Retarded (administered by the Health Care Financing Administration), and Community Mental Health Centers (administered by the National Institute of Mental Health). In the past, the disparate nature and detailed regulations of these programs have forced families of handicapped children to wind 0,04r way through a complex mare to

obtain needed services.

P.L. 94-142 has provided ti- -rnpetu.. for bringing a semblance of order

into this system. Since the lay. -*- mit, the Department of Education' has undertaken a major effort ...)mote interagency coordination. At the Federal level, major agencies providing services to handicapped

children have agreed to attempt to delineate some specific roles and

responsibilities for each agency. For example, written agreements are

currently in effect between OSERS and the Bureau of Community Health Services (BCHS), the Health Care Financing Administration (HCFA), the Rehabilitation Services Administration, the Administration for Public Services, the Administration for Children, Youth, and Families, and the Bureau of Occupational and Adult Education. Especially important to the delivery of health services is the joint policy

statement issued by the Bureau of Education for the Handicapped (BEH) and BCHS in 1978, whicL contains a commitment by both agencies to

explore areas of collaboration among the programs they administer. Among other things, BEH and BCHS agreed to provide a forum for

reviewing regulations and policies to mbiimize the duplication of efforts and gaps in services and to respond to problems identified by States. The joint policy initiatives between the Office of Education and HCFA

are also critical to the effective and efficient delivery of health services. In

1978-79, these agencies developed several documents designed to increase coordination between P.L. 94-142 and EPSDT. In a joint policy

statement, they acknowledged the desirability of providing access to EPSDT services through schools whenever possible and pledged to take

specified actions to accomplish this goal. Moreover, HCFA has issued memoranda encouraging Medicaid agency cooperation with State health

and vocational rehabilka.tion agencies, Title V grantees and other health

care providers, as well s SEAs. Impressive as they are, numbers and interagency agreements do not conve:v *lie full import of P.L. 94-142. Available evidence indicates the

Art z- a major beneficial impact on the lives of handicapped

chi Id their parcnts. Witness, for example, the recent testimony of unesota parent before the House Committee on Education at I

WI-1.m I look back on my experience before the passage of the law, I Nivc painful memories of the many struggles associated with

obtaining appropriate educational programming for my son. It was my perception that I was merely requesting what was his basic right, but I was made to feel that I was asking for too much and my

'In April 1980, the Department of Health, Education, and Welfare was divided into two independent

departmente: the Department of Health and Human Services and the Department of Education. Prior to

that date. programs raw administered through the Department of EcIttion --ere ischninin-A through

the Office of Education (OE) which was one of the operating components of the Department of Health,

Educe:ion. and Welfare.

73

S
requests were not received kindly. For him it was a question of

inappropriate services, for others it was often a question of no

services at all. ... It was the rare parent who was able to move the

system to provide service for his cr her handicapped child, for most

parents do not know where to go or how to begin.

If it were not for P.L. 94-142, Minnesota would not have the fine

special education statute it has today. Today parents have more

input. Today schools cannot base their decisions regarding handicapped children solely upon administrative convenience, and although today Public Law 94-142 may not yet be fully implemented,

at least we have a good begin The Panel believes that the major accomplishment of P.L. 94-142 has

been the revolutionary change in attitude toward handicapped children. Undoubtedly, much work remains to be done before this attitudinal

change is transformed into a comprehensive service system to meet all the

needs of handicspped children. But at least in terms of educational

opportunities, the framework is now in place to ensure that thee..., children

feceive the individualized instruction and related services fiey ittquire.

BASIS FOR RECO1VIMENDATIONS

Although substantial progress has been made in meeting the needs of

handicapped children, the P.L. 94-142 program has not yet lived up to its

full potential. Several general problems affect the overall performance of

the progra. The Paneml is troubled, for example, by the wide State-to-State variation

in the number of children served in the first full year in which P.L. 94-14"

was in operation. Initial estimates were that approximately 10 percent of

the children in each State would be identified and served as handicapped.

In practice, however, the percentages range from a low of 5.2 percent to a

high os" 11.5 percent. It is possible, therefore, that States with low

percentages may be missing as many as half of all eligible children.

The Panel attributes this uneven level of activity to several factors, two

of which are especially significant. First, States were in different stages of

preparation when P.L. 94-142 was enacted. Massachusetts, New Jersey,

and Michigan, for example, were prepared for P.L. 94-142 because they

already had comprehensive education laws of their own in place. At the

other extreme, many States without such programs were forced to

implement P.L. 94-142 with virtually no previous experience or resources.

Second, the definition and assessment of specific handicaps, especially

learning disabilities and emotional disturbances, tend to vary from State

to State. As a result, a child may qiialify for education and related services

in one State but not in another. This situation is caused by a lack of

uniform standards and guidelines, which to some extent reflects the

gOoldb=g, M. Statement before the Subco . cc on Select Education of the House Comm.:zee on

Educt';ma and Labor. Oversight on Educaz. ..- All Handicapped Childress Act, Part i. October I I,

197s.p. 151.

74
imperfect state of the diagnostic art. A better understanding of such childhood problems as poor selective attention, excessive activity, devel- opmental delay, and behavior difficulties is needed so that professionals can more easily reach consensus on which children need help. Another problem of concern to the Panel is the inadequacy of early

intervention efforts. The goal of providing services to all children with handicaps from birth to age 21 is explicit in the law, although no specific deadlines are set. Nevertheless, P.L. 94-142 includes provisions for developing early identification and early intervention programs in States as a step towards achieving this goal. These provisions stem from the current expert conviction that intervention is more effective than remedia' dor, because it relieves suffering sooner and often eliminates or

reduces secondary consequences for the child and his family. While a number of impressive model programs have begun to document tlubstantial positive effects of early intervention, the Panel is concerned tb. at so few programs are available. P.L. 94-142 is, above all else, an entitlement program; thus, the situation in which some young children receive services and others do not is contrary to the intent of the law. The problem of misclassifying specific individuals or whole groups of children also disturbs the Panel. Current figures indicate, for example, that the diagnosis of mental retardation is made far more frequently in some southeastern States than it is in other parts of the Nation. While the variation may reflect a truly different prevalence of retardation, it also may occur because of the use of culturally biased tests, overreliance on one measure of functionfor example, intelligence quotient (IQ)or

racial discrimination.

Several additional problems hamper P.L. 94-142's effectiveness even for those handicapped children participating in the program. Too many handicapped children do not have an IEP or do not have one that is truly individualized. Some IEPs are simply prepackaged assessments with

identical service recommendations for each child with a certain handicap; other plans may consist of different services, br' the schools have placed a ceiling on the total dollar amount that , be spent on each student. Furthermore, IEPs often call only for services that are already available in

a school system rather than for services the child actually needs. Services agreed upon and prescribed for children are not always readily available, however. This is particularly true for physically handicapped

children whose needs are often ignored as schools struggle to address the problems of learning disabled and mentally retarded children. It is not unusual, therefore, for children whose needs have been identified and for whom service plans have been written to be placed on waiting lists for months, depriving them of equal educational opportunities. Children also are often switched back and forth between schools because of changes in their service needs and the ability of =1-n01s to meet them. Schools have difficulty in accommodating handicapped children in other ways as well. For example, schools traditionally provide services only 9 months a year, 5 days a week. The educational needs of many

seriously handicapped children are continuous, however, and they may require services during summers, vacations, or on weekends. School

75
systems are often ill-equipped to provide services during these periods, yet

a recent judicial interpretation of P.L. 94-142 appears to indicate that they

must do so.9

The Panel believes that the failure to make services mandated by P.L.

94-142 fully accessible and available is largely due to the excessive

financial burden that has been placed on Starr, and local educational

agencies in providing a free appropriate public education to handicapped

children. Indeed, because congressional appropriations for P.L. 94-142

have fallen significantly below the expected level, these agencies now bear

the major burden for funding P.L. 94-142 programs. Unless Congress

increases funding in the very near future, many of the problems outlined

above will remain unresolved. Additional funds to implement the mandates of P.L. 94-142 could

possibly come from Medicaid and other health insurance programs

through reimbursement for the health and mental health services provided

under the Act. However, restrictions on Medicaid eligibility and limitations on service coverage preclude many handicapped children from

receiving the services they require. Moreover, reimbursement from private

insurers is often denied because services are deemed to be educationrelated rather than health-related.

The Panel believes, however, that shortfalls in funding do not fully

account for current deficiencies in the operation of the P.L. 94-142

program. Because of their lack of clarity and precision, the Act itself and

its accompanying regulations also must shoulder some of the blame. For

example, terms such as "identification," "education," and "related

services" are defined and described somewhat ambiguously. There are

often questions, therefore, as to how children in need of special education

and related services are to be identified., when their education should

include services that are sometimes viewed as care and treatment by

health and social welfare pre ders, what constitutes a related service, and

who is to provide and pay for

The legislation and regulations are also vague in their delineation of

specific roles and responsibilities for carrying out the mandates of P.L.

94-142. There is a general lack of understanding, for example, that the

State, and not the SEA, is responsible for ensuring that every child in the

State receives a free appropriate public education., and that the SEA has

been delegated the sole responsibility for ensuring compliance with the

requirements set out in P.L. 94-142.

Furthermore, P.L. 94-142 leaves unresolved many issues that touch

upon the relationship between health and education and the responsibilities each sector should bear in providing special education and related

services to handicapped children. The Act and its regulations do not

answer such questions as: Whet is the responsibility of educational agencies in ensuring the

quality of required health andmental health services?

What responsibility do they have regarding the availability and

appropriate but confidential use of a child's health and mental

health history in developing the IEP?

9Araistrong v. Kline. 476 F. Supp. 583 (ED. Pa. 1979),alFd 485 F.2d 1298 (3d Cir. 1980).

76
What authority do occupational and physical thel-apists, nurses, and education personnel have in making recommendations for health service needs?

The Panel is concerned that such unsettled issues have affected the overall

performance of the P.L. 94-442 program. Another problem inhibiting the effectiveness of P.L. 94-142 is the lack of a coordinated network of services for handicapped children. When Congress enacted P.L. 94-142, it expected that education and health

agencies would coordinate the delivery of services. This has not always been the case. Schools are increasingly recognizing the health needs of their handi- capped students, and health professionals arc becoming increasingly

aware of th functional and educational aspects of their patients' lives. However, there still remains a significant duplication Of services (particularly evaluative services), a lack of mutually comprehensible terminology by health, mental health, and education professionals, and inadequate

cooperation among agencies to meet the needs of handicapped children. All too often families must seek out health services from a variety of providers, go from agency to agency to obtain funds for supplies and medicines, and painstakingly piece together a program fo,- themselves and

their children. It is not unusual for the mother of a Isar apped child to

consider advocacy with agencies and schools her job. Services may be available, but they are often provided in far-flung locations and by

a variety of professionalsmany of whom require extensive and exhaustive probes into the families' social and financial status. Agencies may all show concern, but few can provide a coordinated package of needed

services. P.L. 94-142 was responding to this problem when it placed the

responsibility of coordinating services with the SEAs. In practice, however, these agencies have been unable to live up to this responsibility. The Panel believes that three key factors inhibit effective and efficient coordination. First, while there is a definite education sectorthe public

school systemwhich has a relatively stable and replicable stnicture from

town to town and State to State, there is no parallel health system- Most

children receive their health care in the private sector from individual practitioners, hospitals, and clinics providing various services and using

several payment mechanisms. It can become quite difficult, therefore, for

the education sector to determine with whom it is supposed to coordinate. Second, notwithstanding the fact that erch piece of legislation pertaining to services for the handicapped generally provides for coordination with other programs, definitions and mandates among programs are not always consistent in their approaches to handicapped children. Third, although the Federal Government has initiated a major effort to

improve interagency cooperation by focusing primarily on the negotiation of Federal, State and local agreements, many of these agreements are merely promises to cooperate. They do not include comprehensive procedures that address the major areas of overlap, the determination of which services are appropriate, the qualifications of the persons providing

e services, or-the mechanism for payingfor them.

Other problems also bear upon the ability of P.L. 94-142 to accomplish

its goals. One, which is a major deficiency in the prograr-, is the lack of

77
technical assistance to help States overcome their difficulties in providing

adequate special education and related services.

The Panel contends that many school systems are falling short of

meeting the requirements of P.L. 94-142 because the skills required to do

so are not sufficiently developed in the educational system. Teachers and

educators are not always knowledgeable about community agencies. Also

they are not trained in the integration of health, social, and psychological

data and consequently are not necessarily equipped to manage health

problems in the classroom. Traditional training of public school teachers

does not_ for example, extend to techniques such as signing or handling

gross motor seizure in the classroom, yet such knowledge may be needed

to work with handicapped children in the least restrictive environment.

Health and mental health professionals working in schools also may not

be prepared to deal with the special needs of handicapped children. The

Panel is particularly conce, ed about the abF'ity of school nurses to play a

leading role in the implementation of P.L. 94-142. Many schools have nc.

school nurses at all: others ;...*.e served by health department nurses who

can spend only a few hours a week in the school because of other

commitments and responsibilities. School nurses, like most educators,

often have insufficient information about community-based agencies that

provide required services. In addition. many are ill-prepared to meet the

needs of handicapped children, or else have not kept abreast of current developments related to the diagnosis and treatme-ir of handicapping

conditions. Another limitation of the program is the insufficiency of monitoring

procedures to identify noncomplying P.L. 94-142 programs and the lack

of enforcement efforts by the Federal Government to bring such programs

into conformity with the Act. Until improvements are made in these areas,

P.L. 94-142 will not realize its full potential.

PLAN OF ACTION

The primary purpose of the Panel's proposed plan is to maximize the

likelihood that medical, health, and mental health services required by

P.L. 94-142 will be delivered to handicapped school-aged children in the

most appropriate and effective manner. The Act and its accompanying

regulations offer little guidance as to how this goal can be accomplished.

It is the Panel's considered opinion that health and mental health

services can best be provided by, or under the direct supervision of,

appropriate community agencies. When such services could be furnished

more effectively and efficiently in the school setting, these agencies should

assign staffs to the schools. There basically are only two circumstances

under which the Panel believes schools should hire or contract with health

and mental health professionals. One is when the required diagnostic, health, and counseling services are not available through community

agencies. The other is when the school can ensure a formal involvement

with health and mental health agen ices and can assure th.--t its staff will be

78

supporting guidelines be amended to clarify the role of health and mental

health agencies and professionals in -r-roviding special education and

related services to handicapped children. More specifically, the Panel

proposes that regulations implementing the "child find" requirements of

P.L. 94-142 be amended to provide that health and educational agencies

must work cooperatively to evolve a plan for locating rind identifying all

handicapped child en, and to define "child find" responsibilities according to primary contacts with the child. Such measures are essential to the

development of effective early identification and early intervention

programs.

Enlisting Appropriate Service Providers

The Panel proposes that regulations pertaining to the related services

component of the Act be revised to require that educational agencies

identify appropriate health and mental health agencies to serve as expert

consultants in implementing . .s facet of the P.L. 94-142 program. Such

modifications should require t ca.tional agencies ,o establish cooperative

arrangements with health and .ental healti- agencies so that referrals can

be readily made for the Jiagncsis or ev-duation of a handicapping

condition. Educational agencies also should Ile required to make every effort to

utilize all existing health and mental health resources to deliver and

finance health and mental health services before they can expend funds

allocated under the Act. The Panel suggests that specific use be made of

the services provided by Title V's Crippled Children's Services and

Community Mental Health Centers (CMHCs). But other health and

mental health resources should be employed as well. Among public

agencies. educational agencies should look to maternal and child health

projects, comprehensive health centers, Title XX supported services, local

health departments, and nursing agencies to provide needed services. In

the private sector, educational agencies should turn to hospitals, health

maintenance organizations (HMOs), private physicians, therapists, and

other health and mental health providers for assistance.

Public and private insurance mechanisms, such as Medicaid or Blue

Cross/Blue Shield, should be used to pay for required services. Medicaid

already requires first-dollar coverage for needed health-related services,

but States must be better informed about this policy. On the other hand,

the policy of many private insurance companies is not to reimburse for

related services mandated by P.L. 94-142. The Department of Education,

therefore, should develop incentives through which States would be

encouraged to require payment by private insurers for services that would

be cnvered if they were not recommended or provided by an educational

agency. Consideration should also be given to withholding Federal

contracts from companies that engage in this practice.

Finally. the Panel recommends thrt guidelines be issued encouraging

LEAs to hire or contract with an individual health or mental health

professional only when services are unavailable through community

80 C4 I
agencies or when the school can =Imam a formal relationship with

community-based agencies through which health and mental health

resources will be coordinated. In such instances, the agencies should make every effort to secure financial support for the child from appropriate hessIth or mentai health resource&

Additional Recommendations

Beyond these more general proposals, the Panel recommends some

refinements of the regulatory framework specifically directed at certain

tee and activities described in P.L. 94-142.

Clasiliesdoss of Terms sad Responsibilities

The first such proposal concerns the terms "identification," "education,' and "related services." Utilizing the expertise of NINTH and the Federal agency administering the Title V program, the Department of Education should clarify by regulation and in some instances, policy memoranda, the meaning of these concepts. This is particularly important for the term "related services," which has been a source of misunderstanding from the beginning of P.L. 94-142. For example, under current regulations concerning "related services" it is not clear whether "counseling services" include psychotherapy and family therapy. The regulations should be amended to include the-., services among the list of -elated

services the Act provides for and to specify that they be furnished by

qualified professionals such as social workers and psychologists. I *urther- more, since a medical diagnosis may be necessary to ensure private and

public reiMbursement for these services, the Panel recommends that the Department issue a policy memorandum to explain that the Act covers medical services provided for this purpose. A second recommendation is for an explanation of the specific role of

the SEA in providing education and related services. The Panel proposes

that the Department of Education release a policy memorandum

clarifying that the State, and not the SEA, must ensure that a free

appropriate public education, including related services, is furnished to

each handicapped child in the State. The memorandum should explain

that the SEA may redelegate its supervising, standard-setting and monitoring responsibilities to health and mental health agencies so long as

the SEA retains ultimate responsibility and the policies promoted by other State agencies are consistent with the minimum standards set out in PI-. 94-142.

Development of the IEP and Coordination of Services

The Panel believes that the process for developing the IEP needs clarification as well. Regulations should be adopted that specify the

requirements for the provision of health and mental health information

and the role of health and mental health professionals in the evolution of

99 81
the IEP. Such regulations should encompass a number of ideas that the

Panel maintains are important in ensuring that the IEP is based on

appropriate physical and mental health expertise. First and foremost, these regulations should require that the LEA

designate or employ an appropriately qualified health professional to

manage the related services component of the IEP.1° Under the regulations. this "health care coordinator" would be responsible for cbtaining with the parent's consentall pertinent needed data from the child's

primary physician and from any consultants or special medical programs

in which the child has participated. The health care coordinator also

would be responsible for arranging any additional medical evaluations the

child might need through appropriate community resources, including CC

services, CMHCs, local and regional hospitals, and other public and

private facilities. If a child exhibits a health or mental health problem, regulations should

mandate that the formal meeting to discuss the IEP with parents include

someone skilled in understanding medical information and, where

appropriate, a mental health professional from a local agency. When the

child's primary care physician cannot or will not perform this role, the

designated health care coordinator should substitute. The health care

coordinator, however, should be in contact with the child's primary

physician before the IEP meeting; after the meeting, the coordinator

should make the proposed IEP available v.. the child's doctor for review to

r....r.surc consistency between medical and educational treatments. Regula-

:ions should also encourage tale participation of such health personnel as

nurses and physical or occupational therapists, where appropriate, and

permit them to make recommendations on the nature, frequency, and

amount of service required. Nevertheless, such recommendationsas well

as all other medical and health components of an IEPshould be

approved by the child's primary care physician before being formally

incorporated into a specific plan.

Confidentiality of Records

The Panel recognizes that Federal statutes and regulations to protect

education and medical records of handicapped children-- are somewhat

limited. The Family Educational Rights and Privacy Act requires that an

educational agency have a written release from the child's parent before

disclosing personally identifiable information from a student's education

record. Parental consent is not required if the disclosure is made in the

child's school to other school officials who have legitimate education

interests. Protective measures that are more directly related to handippcd children and their parents are spezifically mandated by P.L.

94-142 and its implementing regulations.

The Panel believes, however, that further safeguards are needed. It

recommends that the Department of Education develop additional

regulatory protection for the educational and medical records of handi1°The Panel urges that. in the future. community tape management units be developed to coordinate

and monitor all childrees services. including those required as related servicesfor handicapped children

under PI- 94-142_

82

( 4
capped children. Czwrent regulations should be amended to require that the contents of an IEP, any notes from an IEP meeting, and all

el supplemental informationhome visit reports, for example --be consid- =ICOnnf ential and that the educational agency not disclose any part of

that information without informed written consent from the child's parent. Under these regulations, parents should bc given the right to determine who may be a party to any part of an IEP meeting in which confidential information is discussed. Finally, the Panel recommends that the

regulations specify that parents be informed in writing of all their rights

relating to issues of privacy and confidentiality.

In-service training for per ,onuel who deliver services required by P.L. 94-142 is another mandated activity that needs improvement Current regulations do not include a role for existing hearth and mental health

resources. The Panel recommends, therefore, that these regulations be

revised to require that health and mental health professionals' particularly those associated with maternal and child health, crippled children's, and community mental health programsparticipate in developing and

delivering in-service training to general and special education personnel, including =embers of the school's instructional, related services, and

support staff Similarly, special education personnel should be required to work with health and mental health professionals in evolving healthrelated in-service and preservice trainin g programs. Such programs should include familiarization with various handicap- ping conditions and related support care needs, and should be aimed at changing attitudes among education and health personnel_ In addition, in- dec .:h training on specific handicaps, such as hemophilia, should be provided on a consultation basis to individual education and health

personnel in the schools.

Technical Asskitanee, Program Monitoring, and Enforcement

Increased and improved technical assistance also is needed to promote

and expand P.L. 94-142 services. This assistance should include information about public and private funding resources for health and mental health services, along with personnel training materials developed with the

assistance of the Federal Title V agency_ PL.. 94-142 will never reach its full potential, however, until the Department of Education enforces full compliance with the mandates of P.I. 94-142 and its accompanying regulations. A strong enforcement posture will be particularly critical if fiscal pressures result in reduced

services for handicapped children in direct violation of the specific mandates of P.L. 94-142.. The Panel suggests that OSE and the SEAs monitor the implementation of P.L. 94-142 through statistical reports, complaint investigations, and periodic onsite reviews, especially with

regard to the development of the IEP and the provision of related services_ The Panel recommends further that OSE pursue the enforcement of full compliance with P.L. 94-142 and with other civil rights statutes, both

83 94
through its own efforts and in cooperation with other Federal enforcement

agencies."

Pro am Funding

The Panel's final recommendation relates to funding. The Panel urges

that Congress appropriate funding for P.L. 94-142 at the authorized level.

Although the Panel recognizes that the mandates of P.L. 94-142 apply

irrespective of the level of Federal funding, it believes that increased

Federal support is necessary to increase the likelihood that the congressional promise of appropriate educational opportunities for all handicapped

children will, in fact, become a reality.

BIBLIOGRAPHY

Evans. A. Funding and State Plan Approval Process, as Practiced Under the Handicapped Act, Part B

State Grant Programs for FY 1978 through FY 198a Washington. D.C.: Congressional Rematch

Service. Library of Congress. 1979.

Evans. A. -Preschool Education of Handicapped Children Under the Education of the Handicapped Act,

Part BState Grant Programs.- Washington. D.C.: Congressional Research Service. Library of

Congress. 1990. Unpublished document- Goldb=s. M. Statement before the Subcommittee on Select Education of the House Committee art

Education and Labor. 96th Congress. 1st Session. Oversight on Education for all Handicapped Children

Act. Part 1. October 11. 1979. Washia. Re D.C.: U.S. Government Printing Office. 1990.

Osman. D. and A. Evans. -Educaticr- gipped Washington. D.C.: Congressional Research

Service. Library of Canso-AL 1980.

Palfrey. J.. R. Mervin. and J. A- Butler. New Directives in the Evaluation and Education of Handicapped

Children?* New England Journal of Medicine 298(15). April 13. 1978.

-Special Education: The Struggle for Equal Educational Opportunity in Iowa:* Iowa Lew Review 62(5).

June 1977.

U.S. Department of Education, The Final Report to cite Secretary of the Task Force on Equal

Educational Opporninity.- October 15, 1990. Unpublished document.

US. Department of Health. Education. and Welfare. Office of Education. Progress Toward a Free

Appropriate Public Education. A Report to Congress on the Inzpiementetion of Pl.. 9a-142: The

Education for All Handicapped Children Act. Prepared by the State Program Impkinientaion Studies

Branch of the BEM Washington. D.C..: January 1979 and August 1979.

U.S. Sexism Report No. 168, 94th Congress. 1st Session. The Education for All Handicapped Children

Act June 2. 1975.

Walker. L. A Status Report on Federal Interagency Agreements. Washington. D.C.: George Washington

University. Education of the Handicapped Policy Project. 1979.

Weatherly. R- and M. Lipsky- "Street -level Bureaucrats and Institutional Innovation: Implementing

Special Education Reform.- Harvard Educational Review 42(2), May 1977.

11"The Panel commends the Department of Education for its recent report describing the Department's

efforts to improve its performance in cnsunng equal oppornmity for handicapped children. The report.

issued on October 15, 1980. is entitled, "The Final Report to the Secretary of the Task Force on Equal

Education...I Opportunity.- Among the most important steps discussed in the report is the signing of a

compeehensive mensorandtmi of imderstanding between the Office of Civil Rights and OSE- This

memorandum wall help ensure increased coordination between these offices is the Department of

Edur..itiosis efforts to enforce both P.L. 94-142 and Section 504 of the 1973 Rehabilitation Act.

84
COMMUNITY MENTAL

HEALTH CENTERS AND

SERVICE SYSTEMS

MAJOR RECOMMENDATIONS

In response to the Nation's need for comprehensive mental health

services for children and other unserved or underserved populations, Congress enacted the Mental Health Systems Act on September 30, 1980. President Carter signed the legislation into law just I week later. The new Act will replace the Mental Retardation and Community Mental Health Centers Construction Act which was responsible for creating the current network of Community Mental Health Centers. It will not become

effective, however, until FY 1982. In light of this recent development, the Panel's recommendations basically are directed at the mechanisms through which the Mental Health Systems Act will be implemented. Other proposals involve revisions in the

substance of the Act itself. All proposals are offered, however, against a background of the failure of Community Mental Health Centers and their enabling legislation to address adequately the special mental health needs of children and youth. More specifically, the Panel makes the following

recommendations:

Develop and expand the availability of mental health services for children, including early detection and treatment of developmental problems and preventive services for children and their

families.

Increase the availability of high quality treatment services for children and adolescents, including hospital and residential care, as well as appropriate community support mechanisms. Establish Federal policies to foster the development of mental health services in rural and other underserved areas, and to assure

the continuation of existing servicesespecially those serving minority and low-income familiesthat deliver needed consultative, preventive, and therapeutic services to children. Require Community Mental Health Centers and other federally

supported mental health service programs to coordinate their

85

96
services with general health care programs, and with education

and social service agencies serving children. Require Community Mental Health Centers and other federally

supported mental health service programs to extend their services

into schools, Head Start programs, and juvenile institutions, and

to involve families in the delivery of mental health services for children.

e Require State mental health service plans to recognize the developmental needs of infants, children, and adolescents. - Provide Federal support for research and training activities designed to develop a base of knowledge and expertise for the

effective delivery of mental health services to children. Increase Federal funding for all mental health services, but especially those for children.

PROGRAM DESCRIPTION

AND ACCOMPLISHMENTS

As originally enacted in 1963, the Mental Retardation and Community Mental Health Centers Construction Act' (known generally as the

"Community Mental Health Centers or CMHC Act") authorized limited Federal financial assistance to States to aid them in the construction of

Community Mental Health Centers (CMHCs). Congress believed that such centers could be more effective in treating the mentally ill than the

institutional programs of State and county mental hospitals that had been

the; dominant mode of treatment. The hope was that, ultimately, community-based treatment programs would supplant large institutions in

dealing with the Nation's mentally ill. The 1963 Act gave priority to general hospitals that wished to develop CMHCs as part of their services. To qualify for assistance, each CMHC was required to provide a minimum of five services that included

inpatient, outpatient, partial hospitalization, emergency, and consultation

and education. Facilities were to be individually designed so as to meet

the needs of a CMHCs service or "catchment area."

Initial CMHC funds basically were to be used to build new, and expand

existing, facilities. However, through a series of amendments adopted over a 15-year period, Congress broadened the original CMHC program to

provide Federal assistance for a number of supportive and administrative activities in addition to appropriations for new services, including those

for children.2 Part F of the 1970 amendments to the CMHC Act created a

new program for children's mental health services under which funds were

made available for construction and staffing assistance, and for training

and evaluation. These funds were authorized for consultation services in

both community health centers and specialized treatment facilities. The

'Tide 42 U.S.C. Section 2689 et seq. (1976 & Supp. H 1978).

2Throughout this chapter, the term "children" is used to refer to all individuals up to and including age

17. The term "infant" refers to children in their first year of life; the terms "adolescent" and "youth" refer

to children ages 12-17. Unless these terms are mentioned specifically, the reader should assume that

reference is being made to "children" in its-broadest sense.

86

C4 "1
1975 amendments, however, specifically revoked authorization for the Part F program. At the same time, these amendments expanded the number of services required to be made available by or through CMHCs

to include mental health services for children, although no special grant program was established for this purpose. As presently structured, the CMHC Act bears little resemblance to the original enabling legislation. Indeed, under the current law and its

regulations, Community Mental Health Centers must now provide 12

instead of 5 basic mental health services t qualify for Federal financial Assistance. These are:,

inpatient services emergency services outpatier:. services court scretning and referral follo-up

43 consultation and education

day care an i partial hospitnii7Ation

transitional services

services for children

.services for the elderly

alcohol treatment and rehabilitatir,n

dr-.ig treatment and rehabilitation3

In most cases, the first six of these service categories must be made available when a Community Mental 1-1-ealth Center is established. CMHCs must phase in the remaining mandated servicesincluding those

for childrenbased -on. local needs and resources over e 3-year period. Services may be provided at the CMHC itself, at satellite centers through

the CMHC staff, or through arrangements with health professionals and

others in the CMHC catchment area. When medically necessary, services must be made available and accessible 24 hours a day, 7 days a week. In addition to these requirements, CMHCs are required to coordinate

their mental health services with the services of other health and social

service agencies and establish ongoing qmality assurance programs. Each

center also must have representatives 1_4- its catchment areas on its

governing board. The Community Mental Health Centers Aet offers six basic grants of

limited number and duration. I with are available (i) to plan Community --TilredfiErflaiiter programs; (2) for the initie operation or staffing of CMHCs; (3) for CMHC consultation and edw.mtion e..rvices; (4) to convert all Civ/HCs to full service centers; (5) to alleviate CMHCs' financial distress as needed; and (6) to acquire, remodel, lease, construct, or expand CMHC facilities. Loth public and nonprofit private entities may apply for grant funds. No grant will be made, however, unless a State plan for the statewide provision of comprehensive mental health services has been approved by the Secretary of the Department of Health and Human Services (DHHS).

3Rapc prevention and control services also may be provided by CMHCs through the National Center

for the Prevention and Control of Rape. The Center. which is administered within the National Institute of

Mental Health. was established under the 1978 amendments to the CMHC Act.

87
The CMHC program is administered regionally under regulations and

guidelines developed by the National Institute of Mental Health (NIMH)

within DHHS. Each of the 10 DHHS regional offices reviews grant

applications, provides technical assistance to applicants, and monitors

funded programs. The authority for final approval of program wants rests

with the National Advisory Mental Health Council, whose members are

selected by the Secretary of DHHS with the concurrence of the President.

Currently, 752 Community Mental Health Centers provide services

throughout the 50 States, the District of Columbia, Puerto Rico, Guam,

and the Virgin Islands. In 1977, centers served an estimated 1.8 million

people including 396,000 children, or 22 percent of the total.4

CMHCs were hospital-based, but over time organizations such as

nonprofit groups and special clinics have also been involved in providing

services. Total expenditures for the CMHC program over the past 14 years

have been approximately $2.2 billion; 7.3 percent of this amount has been

spent on services for children through the Part F program.5

Although the CMHC Act has undergone substantial revisiom over the

years, its purpose has always remained the same: the establishment of a

nationwide, community-based mental health system. The Panel believes

that considerable progress has indeed been made in achieving this goal

and is encouraged by a number of signs supporting this view.

Perhaps the most important achievement is that CMHCs are providing

mental health services to persons who have traditionally gone without

them. There has been a substantial increase in the availability of mental

health services to the indigent and to persons living in low-income rural

and urban areas. In fact, 54 percent of all patients seen in Community

Mental Health Centers have annual family incomes of less than $5,000,

and 37 percent of funded CMHCs are in rural settings.6

Community Mental Health Centers can also be credited with developing effective public information and education programs about mental

health, mental illness and prevention, and available community resources.

These programs have resulted in an increase of referrals to CMHCs not

only from traditional referral sources such as families and schools, but

also from social services, law enforcement agencies, and other communitybased organizations. In addition, Community Mental Health Centers have made significant

financial progress: in keeping with Congress' original intention of

providing only limited Federal financial assistance for CMI-fC operation,

centers have increased their ability to generate third-party reimbursements

for direct patient care services. Receipts from services have more than

doubled, from 16 percent of total receipts in 1969 to 36 percent in 1977.

4U.S. Department of Health and Human Services, National Institute of Mental Health, Division of

Biometry and Epidemiology. Provisional Data on Federally Funded Community Mental Health Centers,

1977-1978. Betheida, Md.: NJMH Survey and Reports Branch, May 1980.

5U.S. Senate, Committee on Labor and Human Resources, 96th Congress, 2nd Session. Mental

Health Systems Act Report No. 712 to Accompany S 1177. Washington, D.C.: U.S. Government Printing

Office, 1980, pp. 22-23.

6U.S. Senate. Committee on Labor and Human Resources, 96th Congress, 2nd Session. The Mental

Health Systems Act Report No. 712 to Accompany S 1177. Washington, D.C.: U.S. Government Printing

Office, 1980, p. 32.

88 9 9
Program accomplishments for children, however, are difficult to assess. Current data are unavailable because existing reporting systems do not identify the number of children served and the services they receive. The few evaluations that are available tend to focus on the administration and operation of the Part F program that was enacted in 1970 and that provided grants to CMHCs and free-standing children's mental health clinics. Although the program was carried out on a relatively limited scale,7 studies show that the part F program played a critical role in helping to meet the mental health needs of the children and youth who were served under it. Part F programs have been credited with

increasing the rates of child and adolescent referrals from community caregivers

increasing direct services to children

increasing the average number of CMHC full-time equivalent staff members serving children

increasing the average number of children's indirect services per center8

Part F programs produced other significant results in their catchment

areas as well. Outreach activities were expanded to include services in the school setting. Contacts with children of indigent families increased; more than 50 percent of the clients who received services through the Part F program lived in poverty areas.9 Community training activities and consultation services in the community increased also. As a consequence of these and other factors, CMHCs with Part F grants experienced a 49- percent average increase in their caseloads.° And by participating in the sharing of staff and resources with other service systems, Part F programs contributed to the development of a better coordinated mental health

system.

BASIS FOR RECOMMENDATIONS

Since its inception in 1963, the CMHC Act has accomplished a great deal. But it has also suffered from a number of shortcomings that have impeded efforts to establish an integrated local-Statc-Federal mental health system and to meet the special mental health needs of the Nation's children and youth. A basic problem is the insufficiency of CMHC coverage and capacity. The Panel is disturbed that, although the CMHC Act has been in operation for 17 years, more than one-half of the country's population still lives outside the CMHC catchment areas. In many rural areas, resources

7One hundred and sixty-one projects were funded through the Part F program. Of this number, only 19 projects were located in CMHCs. The remaining projects were administered by free-standing ehildren's clinics.

8Sowder, B. J. Assessment of Child Mental Health Needs and Programs. Assistance Corp./General Research Corp. Contract Report OAD-A-CR-78, March

9Sowder, B. J. Assessment of Child Mental Health Needs and Programs. Assistance Corp./General Research Corp. Contract Report OAD-A-CR-78, March

18Sowder, B. 3. Assessment of Child Mental Health Needs and Programs. Assistance Corp./General Research Corp. Contract Report OAD-A-CR-78, March

American Technical

1975.

American Technical

1975.

American Technical

1975.

89
are insufficient to meet the Act's basic service requirements. The Panel

also is troubled by the inability of some CMHCs to meet the mental health

needs of the people living within their catchment areas. Racial and ethnic

minorities especially have not been fully served by the CMHC program.

In addition to a lack of funding, these problems of service availability and

adequacy undoubtedly are caused by insufficient planning, poor management, and deficient monitoring and quality assurance procedures)11 More importantly, the Panel believes that the CMHC program has been

grossly deficient in meeting the mental health needs of children and youth.

Current estimates indicate that at most, only 20 percent of the children

who need mental health services are, in fact, receiving them.12 This low

proportion is even more disturbing in light of the fact that there axe

approximateiy 70,000 chronically mentally ill children under the age of 18

in the United States today, and 50 to 80 percent of them will retain their

disabilities into adulthood."

Even where mental health services are available, they do not sufficiently

meet the special needs of children. Although services to children have

been among the 12 statutorily mandated CMHC services for the past 4

years, several studies and reports indicate children remain a major

underserved population." While CMHCs provide some traditional outpatient services to children,

very few are designed to meet the special requirements of infants and

young children with cognitive, emotional, and psychoneurological iluivel- opment problems. The centers also give little attention to children at risk

or to disturbed adolescents. These are infants, children, and adolescents

who generally require more than the usual mental health services,. For

example, multidisciplinary evaluations, consisting of such services as

nutritional assessments; visual, hearing, and speech tests; psychoneurological testing; and small- and gross-motor skill evaluations often are needed

for appropriate treatment. Also of concern to the Panel is the acute lack of appropriate mental

health services for severely or chronically disturbed children and youth.

While there has been some improvement in recent years, most of the

estimated 2 million children and adolescents with severe mental disturI IFor a more in-depth analysis of the general problems relating to the delivery ofmental health services

under the CMHC Act, see, for example, Comptroller General of the United States. Legislative and

Administrative Changes Needed in Community Mental Health Centers Programs. Washington, D.C.:

U.S. Government Printing Office, 1979. Naierman, N., B. Haskins, s, and G. Robinson. Community Mental

Health Centers ---A Decade Later. Cambridge, Mass: Abt Associates, Inc., 1978. Comptroller General of

the United States. The Community Mental Health Centers ProgramImprovements Needed in

Management. Washington, D.C.: U.S. Government Printing Office, 1971.

I2Hersh, S. P. "A Review azd Commentary on the Carter Mental 1-lealth Systems Act," The Clinical

Psychologist 32, Summer 1979. "Lourie, I. Chronically Mentally III Children and Adolescents, a Special Report for the National Plan

for the Chronically Mentally Ill, August 5. 1979.

"See, for example, U.S. Commission on Civil Rights. Report: The Age Discrimination Study, Part 1,

December 1977; and Part II, January 1979, Washington, D.C.: U.S. Government Printing Office; The

President's Commission on Mental Health. Report to the President, Volume I. Washington. D.C.: U.S.

Government Printing Office, 1978.

90 1 1
bances" are not receiving the services they need. Few CMHCs, for

instance, have addressed the reality that a significant number of children need inpatient or residental care. Moreover, because many severely disturbed children and adolescents are covered by P.L. 94-142 (the Education for All Handicapped Children Act) they frequently are placed in special schools or special education classrooms Educators, however, make little effort to furnish these students with clinical mental health

services.

The Panel con 'ends that several factors account for the inadequacy of mental health services for children. First is the environment in which most

ConkMunity Mental Health Centers operate. CMHCs usually function in

relative isolation from other systems designed to serve children, and their

linkages with these systems are weak. Consequently, early identification

and early mental health treatment interventions do not occur as frequently

as they should. Because mental health services are not well coordinated with the health care system, for example, cognitive and affective

developmental disorders frequently are not diagnosed_or_treated in early

infancy and childhood. Insufficient outreach and coordination with the

local education system often results in the absence of essential mental health services to seriously disturbed children covered under P.L. 94-142, to violent and antisocial children and adolescents, and to other children who are at risk. Poor coordination with the social service system has

similar effects upon abused children and children in foster families. Furthermore, this lack of coordination among service systems under- mines efforts to serve the many children who have mental health problems and are also multihandicapped. These children suffer from physical (including nutritional), social, and learning problems in addition to some

type of mental disorder. Appropriate treatment for them requires that mental health services be combined with various forms of health care, special education, and family assistance. As currently structured, however, CMHCs do not participate in this kind of comprehensive care. A second factor contributing to the inadequacy of mental health

services for children is the lack of statewide planning. State health and mental health plans generally give minimal attention to children's mental health needs. Consequently, the mental health requirements of some

children and adolescents, particularly those who are severely disturbed, are often ignored. The revised National Health Planning and Resources Development Act does call for the integration of mental health planning

into the State health planning process, but it makes no specific provision

for addressing children's mental health problems, or their relationship to

other health service needs, particularly the need to provide some children

and adolescents with more than the traditional mental health services.

Under current law, therefore, there is little hope that this problem will be alleviated."

"U.S. Senate, Committee on Labor and Human Resources, 96th Congress, 2nd Session. The Mental

Health Systems Act Report No. 712 to Accompany S 1177. Washington, D.C.: U.S. Government Printing

Mice, 1980, p. 52.

.16In the 1980 National Health. Planning Goals issued by the Health Resources Administration, a goal addressesfor the first timethe mental health needs of children (Goal III A.4: Child Mental Health).

91
A third factor is the patchwork Federal funding strategy that has been a

part of the Community Mental Health Centers program since its

inception. Originally, Congress expected that CMHCs would become selfsustaining entities through increased State and local support and thirdparty reimbursements. Therefore, the matching funds Congress made

available to centers were both limited in scope and brief in duration.

Despite congressional intentions, State and local governments failed to

contribute sufficient funding to develop centers in all catchment areas. To

a large extent, this general lack of support resulted from the minor role

given to States in deciding whether and where CMHCs should be

established. This funding problem was exacerbated by the limited thirdparty payments available to centers under the Medicaid and Medicare

programs and most private insurance plans.

The Federal solution to this dilemma has been to create various grant

mechanisms that provide additional financial assistance to CMHCs, but

restrict the amount and number of awards each center may receive. Under

this system, grants for the initial CMHC operation are now available on

an annual basis for up to 8 years. Federal contributions to the centers

decline, however, over the 8-year period. Similar limitations are placed on

continuation or maintenance grants and on financial distress grants.

As a result of this eclectic approach to funding, CMHCs spend a great

deal of their time preparing grant applications and performing other

financially and administratively burdensome activities. This, in turn,

forces CMHCs to -educe the services they provide to their patients.

Moreover, as Federal funding runs out, the CMHC concept begins to

break down: inpatient and other profitable services are recommended

more frequently, while services such as consultation and education and

satellite clinics are reduced in both form and quality.

The Panel believes that a fourth factor responsible for the lack of

adequate mental health services for children is the failure of DHHS, and

NIMH -in particular, to provide necessary direction and assistance. NIMH

has not lived up to its responsibilities in several respects. For example,

regulations regarding children's serviceswhich NIMH helps to developare blatantly inadequate in providing Federal guidance on the

content and delivery of children's mental health services.

NIMH also has not taken the lead in establishing a program of

technical assistance related to children's mental health services. Although

this can be explained somewhat by statutory limitations on the amount of

funding that can be allocated for this activity, NIMH could have taken

more initiative in this area. NIMH staff, for example, have not actively

promoted the development of model treatment programs or disseminated

information about programs that are successful.

In -addition, NIMH has not developed in-service training programs to

help increase CMHC staff capacity to serve infants, children, and

adolescents. Yet such training is seriously needed by the many professionals without adequate backgrounds in child development, children's mental

health problems, and accepted therapeutic interventions such as individual, group, or family psychotherapy, parental competence training, or

psychopharmacology.

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7
Finally, NIMH has not sponsored suCicient service-related research that deals specifically with neonates, severely emotionally disturbed children and adolescents, or chronically mentally ill children. This type of research is urgently needed for both preventive and treatment purposes.

PLAN OF AcnoN

The ultimate goal of the Panel is to ensure that the mental health needs of all children and their families are met. This will require chan3es in the general health care system and the mental health care system, and in the relationship between the two.17 The Panel's narrower and more immediate objective is the development, expansion, and improvement of services for infants, children, and adolescents provided through the mental health system. To accomplish this objective, the Panel proposes: expanding the availability of consultative, preventive, and thera- peutic services to children of all ages, especially in rural and other underserved areas

developing new mental health services in underserved areas and assuring the continuation of existing community mental health

centers

coordinating CMHC services with other health, education, and social service agencies serving children

extending CMHC services into other appropriate federally sup- ported programs serving children, including schools, and juvenile institutions

requiring State mental health service planning for the special needs of infants, children, and adolescents as part of broader State planning efforts providing support for research and training activities in mental health services for children

increasing Federal funding for mental health services for children The Mental Health Systems Act18 recently passed by Congress and signed into law establishes a general framework that is consistent with the Panel's recommendations. This legislation was designed, in part, to meet the mental health needs of children and other unserved and underserved populations in the United States. The Act: requires States to develop extensive mental health programs addressing the mental health needs of special groups creates several grant categories including grants for severely

emotionally disturbed children and adolescents and chronically mentally ill individuals, as well as for prevention and linkage programs makes grant funds available to appropriate entities other than traditional CMHCs

"For a full description of the Panel's proposals for imp.--...ements in mental health services including

those that are not focused on the CMHC Act and the Mental Health Systems Act, see chapters 5. 7, and 8

of volume 1. 11P.L. 96-398 (to be codified in Title 42 U.S.C. Sect. 9401 et seq.).

93
In light of these legislative mandates, the Panel's Plan of Action focuses

primarily on regulatory proposals to ensure that the new law will be

implemented in ways that meet the mental health needs of children,

State Planning Activities

With regard to the implementing regulations for State mental health

services plans or, as they are referred to in the Mental Health Systems Act,

services programs, the Panel offers several recommend-htions. First, it

urges that the Secretary of DHHS issue regulations mandating that States

perform, as part of their general mental health service needs assessments,

an assessment of the mental health needs of children for a full continuum

of specialized services. These services should include prevention, early

detection, and treatment of cognitive, emotional, and psychoneurological dysfunctions; family intervention and parental competence training;

special schools; residential treatment services for adolescents; comprehensive community-based services for chronically emotionally ill children;

and special treatment services for mentally retarded children who are

emotionally disturbed. The statewide assessment should be based on

needs assessments undertaken at the area level and conducted in

cooperation with relevant local government agencies including maternal

and child health agencies. Second, the Panel recommends that regulations require each State to

include in its State mental health services program a specific plan for

meeting the special service needs of children through different therapeutic,

consultative, and preventive strategies. This plan should be developed in

coordination with State agencies responsible for health, education, family

support, and, where appropriate,juvenile justice services for children, and

should specify how mental health services would be integrated with these

various service delivery systeths. A third recommendation is that States be required to identify current

State and local budget allocations for children's mental health services as

well as projected budgets for delivering new children's services. In this

way, the contribution of the States and local communities can be properly

evaluated.

Last, the Panel proposes that regulations require States to establish, in

accordance with applicable regulations and guidelines prescribed by the

Secretary of DHHS, mental health service standards including specific

minimum standards for the delivery of children's services. In addition,

States should be required to develop procedures for monitoring compliance with the standards they set. These standards and procedures should

become part of the States' mental health services programs.

Regulatory Requirements for Grant Programs

With respect to the different grant programs, the Panel recommends

that a number of regulatory proposals be adopted to ensure that the

mental health needs of children are met adequately. 1 05

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Operatlou Grants

For operation grants for new CMHCs and continuing CMHCs that have got exhausted 8 years of initial support, implementing regulations should mandate that Community Mental Health Center advisory boards

include both lay persons and professionals with a demonstrated interest in providing mental health services to children. Moreover, these grant applicants should be required to specify how specialized services would be provided to children and adolescents within each of the six service categories mandated in the initial 3-year operation period under the Mental Health Systems Act. Applicants should be required to present a written justification if these services will not be made available. In

adciitiou, regulations should require potential grantees to identify the number of staff members and the =want of money that will be allocated to the delivery of children's services. They also should require potential grantees to document special efforts to identify and serve minority and low-income children. Identical implementing regulations should be adopted for maintenance grants to centers that are no longer eligible for operational support, but that need additional assistance to meet the costs of nonrevenue producing activities such as consultation and education and followup services.

Categorical Grants

Implementing regulations also are needed for the special categorical grant programs under the Mental Health Systems Act. These include: grants for services for severely mentally disturbed children and adolescents

grants for services for chronically mentally ill individuals grants for the prevention of mental illness and the promotion of mental health

grants for mental health ^Lrviccs in health care centers

grants for mental health services for elderly individuals and other priority populations grants and contracts for innovative projects grants for protection and advocacy programs Although children should be served under every one of these programs, the Panel is suggesting specific regulatory proposalsfor the first four only. e Panel has chosen this approach with the expectation that these programs will have the most direct and, therefore, the greatest impact upon the delivery of mental health services to children. Of particular concern to the Panel are the grants for services for severely mentally disturbed children and adolescents and the grants for chronically mentally ill individuals. It believes that the regulations pertaining to these grant categories must define chronically mentally ill individuals to include children and must distinguish these children from those who are severely emotionally disturbed. rle Panel approaches this issue with a degiee of caution because of the long-standing controversy surrounding definitions that tend to become labels. Nonetheless, it maintains that such definitions are necessary to ensure the adequate delivery of special services these children and adolescents need.

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The Panel suggests that the regulations implementing the grant program

for severely emotionally disturbed children define these children to

include those who exhibit major impairment in basic age-expected

personality functions where the primary cause for such impairment cannot

be attributed to an organic condition. This definition would include

children who have severe emotional disturbances in association with

physical impairments or diseases. Regulations for the grant program for

chronically ill individuals could define them to include children whose

basic age-expected developmental functioning is impaired, as a result of

either genetic or environmental factors, to a degree that has already shown

evidence of developing into a pattern of chronic emotional disturbance

which may place the child at risk ofinstitutionalization.

Beyond definitional issues, the Panel's recommendations for these two

categorical grant programs are similar. In both instances, regulations

should require Community Mental Health Centers and other grantees to

develop new services, where necessary, fill the gaps in treatment

modalities for these children. These services include support and counseling for families, the operation ofspecial schools, and both short- and longterm residential treatment, especially for adolescents. Each of these

services, of course, must be appropriate to the age-related needs of the

children and adolescents involved. For children who are chronically

mentally ill, regulations should require grantees to demonstrate that they

are able to serve children and their families intensively and for long

periods of time. Finally, under all circumstances, efforts should be made

to coordinate these services with other service delivery systems for

children.

As for the regulations Pertaining to the prevention grant program, the

Panel recommends that at a minimum, grantees be required to develop

strategies for effecting institutional changes in the health, education, and

juvenile justice systems that will result in more active community support

for children's mental health services. Model projects should be established

at sites where children are most often found, including nurseries, schools,

health care programs, and drop-in centers for adolescents. These projects

should focus on activities such as health promotion as well as primary

prevention and early intervention. In the latter case, model projects should

be designed to forestall chronically debilitating developmental circumstances by aiming a variety of resources at the populations at greatest risk

during the prenatal period or immediately after birth.

Implementing regulations are also needed for grants for mental health

services in health care centers("linkage grants"). The Panel strongly urges

that services for children and pregnant women be given special priority.

Mental and physical health problems for both groups often are intricately

intertwined. For children, these problems include the stress that may be

attendant to normal development and the anxiety that may be associated

with mental or physical handicaps. For pregnant and postpartum women,

they involve the emotional stress that may accompany concerns about the

health of the child or the competence of the mother, and in some instances

they may involve behavior such as drug abuse which is harmful to fetal

development.

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The Panel recommends, therefot e, that regulations establish Title V

service providers, including Maternity and Infant Care (MIC) and Children and Youth (C&Y) projects, and especially crippled children's clinics, as preferred grantees. These providers are in a unique position to

identify early impairments in physical or mental development that may

indicate the need for counseling or mental health treatment.

General GuidelInes

In addition to these regulatory proposals, the Panel believes that it is necessary for the Secretary of DHHS to issue guidelines that will further enhance the delivery of mental health services to children. Standards for children's treatment services should be included. These should specify that children's mental health services include a general health interview and, where appropriate, referral 'to a health provider for a further health

assessment or treatment intervention, Referrals should be made to Title V

agencies, Community Health Centers (CHCs) and other health providers, and children eligible for Medicaid should be referred .to the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program. Such policies will help ensure that children with physical problems are not mistakenly diagnosed as learning disabled or emotionally disturbed. At the same time, referral procedures will promote greater cooperation between health and mental health professionals and encourage the

development of a stronger cross-referral system. Furthermore, these guidelines should encourage the child's parent or caretaker to participate in the development of treatment and followup programs and in the actual delivery of services which, to the extent possible, should be provided in the child's home or community. Guidelines should also encourage grantees to involve the 'various systems in which the child and his family function, including the education system

and, where appropriate, the juvenile justice system.

Amendments to the Act

Despite the considerable advances made by the new Mental Health Systems Act, it does not go far enough in some respects in settling issues

that concern the Panel. Consequently, the Panel is also proposing several

legislative amendments to the Act for Congress' immediate consideration. If adopted in the near future, these amendments should take effect in FY

1982 when the Mental Health Systems Act becomes operational.

Program Funding

First, the Panel recommends that the Act be amended to increase

authorizations for the various grant programs. Current authorizations are

abysmally low. The authorization levels for services to severely emotionally disturbed children and adolescents, for example, rise from a mere $10

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million in FY 1982 to only $15 million for FY 1984. It is certainly

questionable how meaningful such authorizations can be nationally when

the budget for just one program serving a city of slightly more than

700,000 persons for FY 1982 is approximately $3 million- 19 The Panel

recommends, therefore, that by the end of FY 1984, $193 million be

appropriated and applied to the four special categorical grant programs

discussed in this Plan of Action. This figure represents an increase of $90

million over the amounts currently authorized for these grant programs

for FY 1984 by the Mental Health Systems Act." Such an increase

undoubtedly will mean that a substantial number of additional children

will be able to receive the special services they require.

Second, the Panel recommends that a statutory amendment be enacted

that would eliminate the time limitation on grants for nonrevenue

producing services, or "maintenance" grants, that each CMHC or other

mental health service program may receive. To qualify for these grants,

however, a center must agree to use its grant funds for nonrevenue

producing activities including consultation and education, outreach,

home-based services, followup and case management. In addition, the

grantee must be willing to meet the cost of providing services to low- and

moderate-income persons covered by Medicaid or private insurers.

Because these activities and services will always be needed in the

community, adequate funding for them should be provided on a

continuing basis. While the Panel does not believe it likely that States and

localities will be in a position to pick up the entire cost for these services

and activities, it does believe that the responsibility for funding them

should be a shared one. For this reason, the Panel proposes that centers be

required to document that State and local matching funds of 50 percent

are being used for the activities and services described above.

Research, In-Service Training, and Technical Assistance

Additional legislative revisions are needed to ensure that adequate

research, training, and technical assistance activities related to the special

mental health needs of children can be undertaken. The Panel recommends, that the Mental Health Systems Act be amended to permit the

Secretary of DHHS to retain up to 5 percent of the total amount of funds

appropriated under the various grant programs to be used for these

purposes. These programs should give special attention to the mental health needs

of children. Research activities, for example, should be focused on tho

development of clinical techniques and service delivery strategies for

I9The Program is the Division of Child and Adolescent Services at Saint Elizabeth's Hospital in

Washington, D.C. "Current authorizations for the four grant categories for the fiscal year ending September 30, 1984 are.

grants for services for severely mentally disturbed children: S15 million

grants for services for chronically mentally ill individuals: $60

grants for the prevention of mental illness and the promotion of mental health: S8 million

grants for mental health services in health care centers: S20 million

98
infants and young children at risk or with diagnosed emotional, cognitive, or psychoneurological developmental problems. Training programs should be designed to equip health care providers and educators, as well as the mental 'health staff itself, with the specialized knowledge and skills to treat children and their families effectively. These include an under- standing of the emotional and cognitive problems of young children, skills for specific intervention strategies, and the ability to coordinate all available resources needed to assist children and their families.

Program Evaluation

The Panel's final legislative proposal calls for greater program evalu- ation. The Panel believes that a periodic assessment of the mental health services being provided to children is necessary to ensure that their mental health needs are met adequately. The Panel recommends, therefore, that the Secretary of DHHS be required by statute to report to Congress annually on the progress being made to extend appropriate mental health services to children of all ages. The report should include information concerning the type and number of services being provided; the extent to which these services are meeting identified needs; the standards used in providing these services; any service-related research findings generated through the activities of the various National Institutes; and the status of staff preparation and training.

BIBLIOGRAPHY

Borus, J. F. et al. "Coordinated Mental Health_ Care in Neighborhood Health Centers." In Mental Health Services in General Health Care, Vol. II. Washington, D.C: National Academy of Sciences, Institute of Medicine, 1979.

Comptroller General of the United States. The Community Mental Health Centers ProgramImprove- ments Needed in Management. Washington, D.C.: U.S. Government Printing Office, 1971. Comptroller General of the United States. General Accounting Office. Need for More Effective Management of Community Mental Health Centers Program. Washington, D.C.: U.S. Government Printing Office, 1974.

Comptroller General of the United States. General Accounting Office. Legislative and Administrative Changes Needed in Community Mental Health Centers Program. Washington, D.C.: U.S Government Printing Office, 1979.

Hersh, S. P. "A Review and Commentary on the Carter Mental Health Systems Act." The Clinical Psychologist 32(4), Summer 1979.

Lourie, I. "Chronically Mentally III Children and Adolescents. A Special Report to the Secretary of the Department of Health and Human Services on the National Plan for Chronically Mentally August 5, 1980. Unpublished document.

Laurie, R. S. "The National Center: Primary Prevention in its Earliest Years." Zero to Three: Bulletin of

the National Center for Clinical Infant Programs 1(1), September 1980. Naierman, N., B. Haskins, and G. Robinson. Community Mental Health CentersA Decade Later.

Cambridge, Masc.: Abt Associates, Inc., 1978.

Office of the Inspector General. A Service Delivery Assessment Report on Community Mental Health Centers. U.S. Department of Health, Education, and Welfare. Washington, D.C.: U.S. Government Printing Office, May 1979.

Report from the HEW Task Force on Implementation of theReport to the President from the President's Commission on Mental Health. Washington, D.C.: U.S. Government Printing Office, 1979. Report of the U.S. Commission on Civil Rights, Part I. TheAge Discrimination Study. Washington, D.C.: U.S. Government Printing Office, January 1979.

99

1
Report of the U.S. Commission on Civil Rights, Part 11. The Age Discrimination Study- Washington,

D.C.: U.S. Government Printing Office, December 1977.

Report to the President from The President's Commission on Mental Health, VoL 1. Washington, D.C.:

U.S,. Government Printing Office, 1978.

U.S. Senate Committee on Labor and Human Resources. 96th Congress, 2nd Session Report on Mental

Health Systems Act, 5.1177, 1980.

100
CHAPTER 7

OTHER MAJOR. FEDERAL

PROGRAMS AFFECTING

MATERNAL AND CHILD

HEALTH

Ten Federal programs, in addition to those described in detail in this volume, have played a particularly significant role in the delivery of health and health-related services to children and pregnant women. These programs provide not only health care services, but social and educational services as well. Their histories, purposes, and accomplishments are described briefly in this chapter. These programs, and the five already discussed, constitute the core of Federal health and health-related service

activities for children and pregnant women.

COMMUNITY HEALTH CENTERS

Designed to provide health services and related tr..dtining, the Communi- ty Health Centers (CHCs)1 program was launched by the Of of Economic Opportunity in 1966 and subsequently authorized by Section 330 of the Public Health Service Act. Highest priority for funding was given to medically underserved areas, particularly those with high infant mortality rates, older populations, and shortages of health care personnel. The program focuses on comprehensive ambulatory care. Primary health

services include physicans' services, diagnosis, treatment, diagnostic X- rays, laboratory services, and emergency medical care. Preventive services include prenatal and postpartum care, well-child care, children's eye and

ear examinations, immunizations, preventive dental services, voluntary family planning services, health education, and nutrition assessments. The Community Health Centers program is now administered by the Bureau of Community Health Services within the Health Services Administration. Some 858 CHCs (726 in rural areas and 132 in urban areas) served more than 3.864 million persons in 1979, including more than 1.603 million children. In addition, 112 Migrant Health Centers

Ilide 42 U.S.C. Sect. 254c (1975 & Supp. II 1978).

101
which provide similar servicesserved an estimated 1,052,000 migrant

and seasonal workers, including approximately 221,900 children. In FY

1980, rural and urban health centers were funded at $320 million, and the

m_ igrant centers at $39 million.

The centers have demonstrated measurable success. In a study of

centers in 13 cities, hospitalization, for example, was reduced 25 percent

for center users, compared with nonusers? Nevertheless, there is a

continuing need for greater access to primary and preventive care services

in underserved areas as well as for more coordination between the centers

and other sources of Federal and State funding, such as Medicaid,

Community Mental Health Centers, and family planning services.

TITLE ME

Enacted in 1965, Title XX3 of the Social Security Act provides grants to

the States for the provision of social and support services to low- and

moderate-income families. States may provide many health and healthrelated services, such as family counseling and other mental health

services, support services to developmentally disabled, blind, and physically handicapped individuals, services to expectant parents, transportation to health service providers, early and periodic health screening and

diagnosis for children not eligible for Medicaid, family planning services,

and child day care. The program is operated under the Administration for

Children, Youth, and Families. The Federal appropriation for Title XX

was $2.7 billion in FY 1980, and according to agency projections,

expenditures for services to children accounted for about 62 percent of the

total.

Child day care services are provided with Title XX funds in all States

and the District of Columbia. Day care centers and licensed day care

homes receiving Federal aid through Title XX are significant avenues for

improving the delivery of health services to young children. Some 18,300

centers serve about 870,000 children a year with Title XX funds. They are

subject to Department of Health and Human Services (DHHS) regulations stipulating that children must receive comprehensive health assessments and have appropriate imm unizations, and may be provided

transportation to continuing health services.

Title XX family planning services are provided in the District of

Columbia and in all States but one. Most States offer information on the

availability of family planning resources, referral, and education and

counseling on contraceptive methods. Most also provide direct medical

services, including diagnosis, treatment, drugs, and contraceptive supplies

and devices furnished by or under the supervision of a physician. About

1.4 million persons received Title XX family planning services in FY 1979.

2Okada, L. and T. Wan. **Patterns of Health Services Utilization in Urban Low-Income Areas." Paper

presented to the Institute of Management/Science Operations Research Society of America. Joint

National Meeting, April 30-May 2, 1979.

'title 42 U.S.0 Sect. 1397 et seq. (1976 & Supp. H 1978).

102 113
LE X FAMILY PLANNING SERVICES

Title X of the Public Health Services Act, authorizing Family Planning Services and Population Research,4 was enacted in 1970 because of the high number of unintended pregnancies among the poor. Its purpose is to make comprehensive voluntary .family planning services available to all persons requesting them, but the emphasis is on providing services to low- income women and adolescents. Indeed, regulations clearly instruct grantees to make certain no one is denied services because of an inability to pay. The program provides counseling, contraception services, voluntary sterilization, pregnancy testing, health information, screening and referral, and general community education. Administered by the Bureau of Community Health Services within the Health Services Administration, Title X helps fund some 3,000 agencies across the United States to run 5,125 family planning programs. In FY 1980, funding was $162 million, and organized f3Inily planning programs served 4.4 million low- and marginal-income women, including 2.8 million adults and 1.6 million teenagers. By comparison, in 1966, before significant Federal support for family planning services, only 400,000 women received services in family planning clinics. Nevertheless, approximately 3 million adult women and 1.8 million teenagers still need subsidized family planning services. Title X-funded family planning programs deserve at least partial credit for the decline in the number of unwanted pregnancies in the past few years among groups rwho previously had the highest rates of unintended birthsminorities, the poor, and the least educated. This in turn has helped to reduce Nation's infant mortality rate.

ADOL5:<SCENT PREGNANCY

Despite its comprehensive title, the Adolescent Health Services, Pregnancy Prevention, and Care Act of 19785known generally as the adolescent pregnancy prop-amfocuses on services for pregnant adoles- cents, adolescent parents, and their infants. Adolescents who are pregnant or who are parents are eligible for pregnancy testing, prenatal and postnatal care, family planning services, venereal disease screening and treatment, sex and family life education, and a variety of counseling services related to pregnancy, parenthood, and education, as well as employment. By contrast, adolesceras who are not already pregnant or parents are eligible only for sex education, counseling, referral, and pregnancy testing.

The program is adMinistered under the OrFice of the Assistant Secretary of Health. Congress authorized $75 million for this program for FY 1981, but in the past, the amounts actually appropriated have been significantly lower: in FY 1980, for example, only $7.5 million was appropriated. There

4Titie 42 U.S.C. Sect.. 300 (1976 & Supp. II 1978)..

5lit1e 42 U.S.C. Sect. 300a-21 (Supp. II 1978).

103
were only four adolescent pregnancy programs in 1979, and in FY 1980 27

new grants were awarded. But 300 communities had submitted applications and gone through the process of coordinating their related services

as a prerequisite to receiving funds. (All programs are mandated to have

established linkages with existing resources.) Grantees include schools,

health agencies, advocacy groups, and community action agencies.

There is widespread agreement that the legislation was based on

insufficient datanot only to justify needed funds but also to identify the

minimum services that should be required. Yet the need for a program to

address the problem of unwanted pregnancy among adolescents is

immense. About 17 percent of all infants born in 1977 were born to

teenagers; the Centers for Disease Control have estimated that 46 percent

of teenage births and 70 percent of all teen pregnancies that year were

unintended.6

GENETIC SCREENING

The National Genetic Diseases Act,7 Title IX of the Public Health

Services Act, which is administered by the Office for Maternal and Child

Health within the Bureau of Community Health S1/4n-vices, provides funds

to States for programs of genetic screening, counseling, and referral for

treatment. These programs offer comprehensive screening services for

sickle cell anemia, Cooley's anemia, Tay-Sachs disease, and other genetic

disorders. Funds are also used to support laboratory testing, diagnosis,

and information and educational services. Some selected services include

newborn screening for metabolic disorders, counseling, the preparation of

educational materials for health providers and the public, and the design

of model curricula on genetics for school-age children.

In FY 1980, only $11.5 million was appropriated for the program, yet

the cost of genetic disease to society is enormous. About 30 percent of all

hospitalized children have diseases that are at least partially genetic in

origin. The cost of caring for persons suffering from Down's Syndrome,

for example, is estimated to be $1.7 billion a year.

SIDS

The Sudden Infant Death Syndrome (SIDS) program,8 included in the

1978 amendments to Title IX of the Public Health Service Act, was

initiated to help combat a disorder that claims the lives of 6,000 to 7,000

infants each year who die suddenly, quietly, and unexpectedly during

apparently normal sleep. SIDS is the leading cause of death between the

ages of 1 and 12 months and is responsible for half of all deaths during

that time. The SIDS program, administered by the Office forMaternal and

6U.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.

7Title 42 U.S.C. Sect. 300b (1976 & Supp. II 1978).

'Title 42 U.S.C. Sect. 300c-11 (1976 & Supp. II 1978)-

1 -a_

.7" 104
Child Health, funds 42 projects in over half of the States to provide counseling and information services and to carry out data-gathering activities. It also conducts more than 2,000 educational programs each year. Funding for FY 1980 was $2.8 million. An additional $11 million was allocated within the budget of the National Institute of Child Health and Human Development for research into the sudden infant death syndrome.

HEAD START

Among the Federal Government's most successful child development efforts is its Head Start program9 for low-income preschool children. Started by the Office of Economic Opportunity in 1965, and legislated under Title V-A of the Economic Opportunity and Community Partner- ship Act in 1967, the Head Start program to date has served 7.8 million children.

Now administered by the Administration for Children, Youth, and Families within the Office of Human Development Services, Head Start is designed to enhance a child's competency through education, health am' social services, and parental involvement. It presently serves 378,000 preschool children in more than 9,200 centers (including centers located in urban ghettos, rural areas, Indian reservations, and migrant camps) throughout the Nation, with a budget of $735 million. Its health component consists of medical, dental, nutritional, and mental health services, with a broad range of preventive, diagnostic, treatment, and rehabilitative services.

Head Start has been shown to improve children's health: children who participate in Head Start have fewer cases of anemia, more immuniza- tions, better nutrition, and better health in general than do children with similar backgrounds who do not participate. In addition, where there is a high degree of parental participation in the program, children gain in their social development.

DEVELOPMENTAL DISABILITIES

The Developmental Disabilities Service Actl° was established to provide and coordinate services for persons suffering from certain chronic disabilities whose needs span several service areas, including health, education, social welfare, and rehabilitation. An estimated 5.6 million mentally retarded persons were originally eligible for the program. But recent amendments to the authorizing legislation have limited eligibility to individuals who have a severe chronic disability that is attributable to a mental or physical impairment, is manifested by age 22 and is likely to continue, results in substantial functional limitations, and indicates the need for a combination of special services. This shift to a functional

9Title 42 U.S.C. Sect. 2928 (1976 & Supp. II 1978).

1°Title 42 U.S.C. Sect. 2661 et seq. (1970 & Supp. IV 1974).

116 105
definition of eligibility with a focus on severe retardation has reduced by

more than one-third the number eligible, to an estimated 3.4 million

persons. The program is operated by the Developmental Disabilities Administration within the Office of Human Development Services. Grant funds are

targeted at rural and urban poverty areas, with the bulk of the funds

distributed to State-designated agencies providing priority services. These

include alternative community living arrangements, nonvocational social

development, case management, and child development. States receiving

grants must spend a specified percentage oftheir awards on deinstitutionali7ation. Funding for FY 1980 was $62.4 million, which provided direct

assistance to about 300,000 persons.

DISABLED CHILDREN'S PROGRAM

The Supplemental Security Income Disabled Children's programn

provides referral and direct services for blind and disabled children

receiving supplemental security income benefits under Title XVI of the

Social Security Act. Medical, educational, social, and rehabilitative

services are covered under the program, which is administered by the

Office of Maternal and Child Health. Regulations provide for case

management, a written Individualized Service Plan for each child, and

necessary supportive services. Funding is based on formula grants to

designated State agencies (46 States use the Crippled Children's Agency).

For FY 1980, $19.8 million was distributed to serve approximately 209,000

children.

PROGRAMS OF THE CENTERS FOR DISEASE

CONTROL

The Centers for Disease Control (CDC) in the Public Health Service

provide a variety ofservicesi2related to maternal and child health through

various centers and divisions. The Center for State Services, for example,

gives technical assistance to State and local health departments for

venereal disease and tuberculosis control procedures, and makes grants to

States to provide vaccine in public clinics and schools. The Division of

Environmental Health Services provides personnel to States for rodent

control and awards funds to small and medium-sized cities for fluoridation as well as to local and city health departments to screen children for

lead poisoning. In addition, personnel from the Center for Epidemiology

are sent all over the Nation to investigate epidemic outbreaks. The Family

I *Title 42 U.S.0 1381 et seq. (1976 & Supp. II 1978).

I2The authorization for each of the service programs described in this paragraph is found in Sections

317 and 318 of the Publ. qealth Service Act. All are codified within Title 42 of the United States Code

(1976 & Supp. II 1978) at following sections: venereal disease control (Sect. 247b), tuberculosis control

(Sect. 247b), vaccinations (L. ts. 247b and 247b note), rodent control (Sects. 247b and 254c), fluoridation

(Sect. 300f et seq.), lead -bases, paint poisoning control (Sect. 4801 et seq.), family planning (Sect. 300a).

alcohol and smoking prevention (Sect. 2688e et seq.), and health curricula (Sect. 300u).

106
Planning Division performs epidemiological surveillance of abortions, assesses various family planning techniques, and conducts studies on birth

defects. Grants for educational programs, such as alcohol and smolcirig prevention, are made under the auspices of the Center for Health Education, which is also responsible for developing health curricula for elementary schools. The Centers' programs save lives and money; a major study13 showed that $180 million spent on measles vaccination programs from 1966 to

1974, for example, saved $1.3 billion in medical and long-term health care

costs by reducing deafness, mental retardation, and other problems. The CDC budget for FY 1980 was $295.7 million.

CONCLUSION

It is clear from this brief review of ten Federal programs that, in

addition to the five programs discussed in previous chapters, there are various other potential avenues for improving child healththrough

direct services to pregnant women, infants, and children, through social service and public education programs, through programs addressing the environmental and behavioral components of health, and through

programs intended to reduce the number of unwanted pregnancies. These additional programs have many service components and goals similar to those of Title V, Medicaid, WIC, P.L. 94-142, and the recent mental health systems legislation. The program philosophy and strategies urged

throughout this volume should be applied to all 15 programs, even though

the Panel has devoted special attention to a subset of them.

BIBLIOGRAPHY

Alan Guttmacher Institute. "Adolescent Fertility and Health Care. Background paper prepared for the Select Panel for the Promotion of Child Health. Unpublished document.

Alan Guttmacher Institute. -Family Planning:' Background paper prepared for the Select Panel for the Promotion of Child Health. Unpublished document

Alan Guttmacher Institute. "Genetic Services." Background paper prepared for the Select Panel for the Promotion of Child Health. Unpublished document

American Public Health Association, Black Caucus. "Project Head Start: Relic or Reality for Black Children and Families." Washington, D.C.: American Public Health Association, November 1979.

Comptroller General of the United States. General Accounting Office. Better Management and More

Resources Needed to Strengthen Federal Efforts to Improve Pregnancy Outcome: Report to Congress. HRD-80-24. Washington, D.C.: U.S. Government Printing Office, 1980.

Comptroller General of the United States. US. General Accounting Office. Early Childhood and Family Development Programs Improve the Quality of Life for Low-Income Families Report to Congress.

HRD-79-40. Washington, D.C.: U.S. Government Printing Office, 1979.

EszarcI, N. V. and C. W. Tyler, Jr. "Family Planning and Child Health:* Background paper prepared for

the Select Panel for the Promotion of Child Health. Atlanta, Ga.: Center for Disease Control, July 1980.

Klerman, L. V. "Adolescents: Health Status and Needed Services.." Better Health for Our Children: A

National Strategy, Vol. IV. Washington, D.C.: U.S. Government Printing Office, 1981. Lefkowitz, B. and D. Andrulis. "The Organization of Primary Health and Health-Related Preventive,

Psychosocial, aid Support Services for Children and Pregnant Women." In Better Health for Our

Children: A National Strategy, Volume IV. Washington, D.C.: U.S. Government Printing Office, 1981.

"Witte, 1. J. and N. W. Asnick. "The Benefits from Ten Years of Measles Immunizations in the United

States." Public Health Report 90, May-June 1975.

107
Okada, L. and T. Wan. "Patterns of Health Services Utilization in Urban Low-Income Areas." Paper

presented to the Institute of Management/Science Operations Research Society of America. Joint

National Meeting. April 30-May 2, 1979.

Slatin, M., N. W. Stone, et al. "Primary Prevention in Mental Health: A Model for Preschool Provaras."

Paper presented at the Annual Meeting of the American Public Health Association. Washington, D.C.,

October 20, 1980.

U.S. Department of Health and Human. Services,Center for Disease Control. "Teenager Childbearing and

Abortion PatternsUnited States, 1977." Morbidityand Mortality Weekly Reperrt. 29: 157, 159, April

11, 1980.

U.S. Senate. Hearing before the Subcommittee on Child and Human Development, Committee on Human

Resources, February 24, 1978. Family Planning Services and Population Research Act Extension of

1978. Washington, D.C.: U.S. Government Printing Office, 1978.

Witte, J. S. and N. W. Axnick. "The Benefits from Ten Years of Measles Immunizations in the United

States." Public Health Report 90, May-June 1975.

I

108
APPENDIXES

APPENDIX A

SUMMARY OF MAJOR

FEDERAL PROGRAMS

PROVIDING HEALTH AND

HEALTH-RELATED SERVICES

TO CHILDREN AND PREGNANT

WOMEN

L HEALTH PROGRAMS

A. HEALTH FINANCING PROGRAM

1) Medical Assistance Program (Medicaid)

Placement: Health Care Financing Administration, Departim4nt of Health and Human Services.

Description: Formula _grants under the Social Security Act to provide

financial assistance to States for payments of medical assistance on behalf of cash assistance recipients and, in certain States, on behalf of the medically needy. Includes

the Early and Periodic Screening, Diagnosis, and Treat- ment Program (EPSDT). EPSDT provides preventive health care to children in low-income families by identi- fying, diagnosing, and treating medical, developmental, and dental problems. Legislation: Title XIX, as amended by P.L. 88-97, P.L. 90-248 P.L. 91-56, P.L. 92-223 P.L. 92-603, P.L. 93-66, and P.L. 93-233.

Funding: FY 1980 Appropriations: $14.155 b.

B. MATERNAL AND CHILD HEALTH CARE

1) Title V

Placement: Bureau of Community Health Services, Health Services Administration, Public Health Service, Department of Health and Human Services.

111
Description:

Legislation: Funding:

Formula and project grants to States for maternal and

child services to improve the health of mothers and

children and to reduce the incidence of mtntal retardation

and infant and maternal mortPlity. Services included are

family planning, :maternity, well-child, pediatrics and

special child health services, early detection, prevention, and after care. Formula and project grants to States for

training personnel in health care of and related services to mothers and children; particularly mentally retarded and

multiply-handicapped children. Research provides project grants to support research in health services for mothers

and children. Formula and project grants to States for

crippled children's services to extend and improve medical and related health services to chronically ill and

handicapped children. Social Security Act, Title V, as. amended. FY 1980 Appropriations: $376.3 m.

2) Sudden Infant Death Syndrome Information and Counser4ing

Placement:

Description:

Legislation:

Funding:

3) Genetic

Placement:

Description:

Legislation:

Funding:

112

Bureau of Community Health Services, Health Services

Administration, Public Health Service, Department of Health and Human Services.

Project grants to support the collection and analysis of

data relating to the causes of sudden infant death

syndrome, to provide information and counseling to

families, and to educate health officials, emergency care providers, and the general public. Public Health Service Act, Title XI, as amended by P.L.

93-270 and P.L. 95-613.

FY 1980 Appropriations: $2.8 m.

Diseases Testing and Counseling Services

Bureau of Community Health Services, Health Services

Administration, Department of Health and Human Services.

Project grants to assist State and local governments as well as public and private nonprofit organizations in

establishing and operating voluntary screening, diagnostic, laboratory, and counseling programs. The Sickle Cell

Anemia Program is included in this program. P.L. 95-626; Health Services and Centers Amerm ments of

1978 which amends Title XI, Part A of the Public Health

Service Act.

FY 1980 Appropriatioms: $11.57 m.
4) Supplemental Security Income Disabled Children's Program

Placement: Office 'or Maternal and Child Health Services, Bureau of

Community Health Services, Health Services Administration, Public Health Service, Department of Health and Human Services.

Description: Formula grants to States based on the State child

population. These grants support special health, education, social service, and vocational rehabilitation services

to disabled children under 16 years of age. Legislation: Social Security Act, Title XVI. Funding: FY 1980 Appropriations: $19.8 m.

5) Adolescent Pregnancy Program

Placement: Office of Adolescent Pregnancy, Office of the Assistant Secretary of Health, Public Health Service, Department of Health and Human Services.

Description: Project grants to provide comprehensive services to

pregnant adolescents, adolescent parents, and some teenagers at risk. The emphasis is on teenagers 17 and under. Legislation: Health Services Amendments of 1978, Titles IV, VII, and VIII, P.L.95-626. Funding: FY 1980 Appropriations: $7.5 m.

6) Childhood Lead-Based Paint Poisoning Prevention

Placement: Centers for Disease Control, Public Health Service, Deparment of Health and Human Services. Description: Project grants to provide for the development of compre- hensive lead-based paint poisoning programs, detection

and treatment of lead-based paint poisoning, and educational programs about the hazards of lead-based paint. Legislation: Lead-Based Paint Poisoning Prevention Act, Title I; P.L. 91-4595, as amended by P.L. 93-151, P.L. 94-317 and P.L. 95-626.

Funding: FY 1980 Appropriations: $11.25 m.

7) Comprehensive Hemophilia Diagnostic and Treatment Centers

Placement: Office for Maternal and Child Health, Bureau of Commu- nity Health Services, Health Services Administration, Public Health Service, Department of Health and Human Services.

Description: Project grants to initiate or expand regionalized compre- hensive diagnostic and treatment centers for hemophiliac patients stressing individual care plans and home care.

113
Legislation: Public Health Service Act; P.L. 78-410, Title XI, as

amended.

Funding: FY 1980 appropriations: $3.0 in.

C. FAMILY PLANNING

I) Miele X

Placement: Bureau of Community Health Services, Health Services

Administration, Public Health Service, Department of

Health and Human Services.

Description: Project grants to provide education and comprehensive

medical and social services to individuals seeking family

planning services. Also, under special projects, training

grants and contracts.

Legislation: Public Health Service Act, Title X; P.L. 95-83.

Funding: FY 1980 Appropriations: $162.0 in.

D. GENERAL HEALTH AND MENTAL HEALTH CARE

1) Community Health Centers

Placement: Bureau of Community Health Services, Health Services

Administration, Public Health Service, Department of

Health and Human Services.

Description: Project grants to support the development and operation

of community health centers which provide primary,

supplemental, and environmental health services to medically underserved populations.

Legislation: Public Health Service Act; P.L. 95-626 as amended by

Title I, P.L. 95-83, as amended by Title V, P.L. 94-63.

Funding: FY 1980 Appropriations: $320.0 na.

2) National Health Service Corps

Placement: Health Services Administration, Public Health Service,

Department of Health and Human Services.

Description: Provides specialized services through assignment of personnel to Communities that request to be designated

critical health personnel shortage areas. Medical and

dental care may be provided at a reduced rate or at no

charge to qualifying persons.

Legislation: Public Health Service Act; P.L. 78-410, as amended.

Funding:. FY 1980 Appropriations: $74.1 m.

3) Health Incentive Grants for Comprehensive Public Health

Services

Placement: Centers for Disease Control, Public Health Service,

Department of Health and Human Services.

114
Description: Formula and health incentive grants to assist State health

authorities in providing comprehensive public health

services.

Legislation: Public Health Service Act, Title III. Funding: FY 1980 Appropriations: $68.0 m.

4) Disease Prevention Grants

Placement: Centers for Disease Control, Public Health Service, Department of Health and Human Services. Description: Project grants to assist States in supporting a disease control program designed to contribute to national protection against diseases, including tuberculosis, rubella, measles, poliomyelitis, diphtheria, tetanus, and mumps. Legislation: Public Health Service Act, as amended by the Disease Control Amendments of 1972; P.L. 92-449, Disease Control Amendments of 1976; P.L. 94-317 and P.L.

95-626.

Funding: FY 1980 Appropriations: Venereal Diseases, $47.62 m.; Immunization, $30.34 m.; Fluoridation, $6.79 m.

5) Community Mental Health Centers

Placement: National Institute of Mental Health; Alcohol, Drug Abuse, and Mental Health Administration; Public Health Service; Department of Health and Human Services. Description: Project grants to support comprehensive mental health

services including day care and specialized services for the mental health of children.

Legislation: Community Mental Health Amendments of 1975, Title

III; P.L. 94-63.

E. HEALTH CARE FOR SPECIAL POPULATIONS

1) Migrant Health Grants

Placement: Bureau. of Community Health Services, Health Services Administration, Public Health Service,. Department of Health and Human Services.

Description: Project grants and contracts to public or nonprofit agencies to support the development and operation of migrant health centers. They also support projects which

provide primary ambulatory and inpatient, environmental and supplemental health services which are accessible to migratory and seasonal workers. Legislation: Public Health Service Act, Title III, P.L. 95-626.

Funding: FY 1980 Appropriations: $39.7 m.

2). Indian Health Services

Placement: Indian Health Service, Health Services Administration,

124 115
Description:

Legislation:

Funding:

Public Health Service, Department of Health and Human

Services.

Project grants to build the capabilities of tribes to staff

and manage their health programs. Available only to

federally recognized tribes and tribal organizations. Act transferring responsibility for health services from the

Bureau of Indian Affairs to the Public Health Service;

P.L. 83-568.

FY 1980 Appropriations: $547.21 m.

3) Appalachian Health Program

Placement: Appalachian Regional Commission.

Description: Project grants to provide a flexible, noncategorical ap- proach to the development of health demonstration

projects through community planning on a multicounty basis and implementation of that planning through

service.

Legislation: Appalachian Regional Development Act of 1965, Sections

202 and 214, as amended; P.L. 89-4.

Funding: FY 1980 Expenditures: $18.01 m (Appropriations not

earmarked for Health Program).

4) Health to Underserved Areas Program

Placement: Bureau of Community Health Services, Health Services

Administration, Public Health Servicm. Department of

Health and Human Services.

Description: Project grants to integrate primary care services into a

system of rural health care delivery and to develop mechanisms to provide better health care to rural people,

including those eligible for Medicaid:

Legislation: Social Security Act, Title XI, Section 1110.

Funding: FY 1980 Appropriations: $14.0 m.

5) Civilian Health and Medical Program of the Uniformed Services

(CHAMPUS)

Placement: Office of Assistant Secretary of Defense for Health

Affairs, Department of Defense.

Description: Direct payment for specified uses to provide medical care

in civilian facilities.

Military Medical Benefits Act of 1966, as amended. FY 1980 Appropriations: $736.0 m. Legislation: Funding:

6) Uniformed

Placement:

Description:

116

Services Health Benefits Program

Office of Assistant Secretary of Defense for Health

Affairs, Department of Defense. Direct provision of medical care to active duty uniformed

services personnel and their dependents.
Legislation: Military Medical Benefits Act of 1966, as amended. Ftindin,g: FY 1980 Appropriations: $3.864 b.

IL HEALTH-RELATED PROGRAMS

A. NUTRITION PROGRAMS

1) Special Supplemental Food Program for Women, Infants, and Children (WIC)

Placement: Food and Nutrition Service, Department of Agriculture. Description: Grants to States for projects to supply supplemental nutritious foods and nutrition education to participants

identified to be nutritionally at risk because of inadequate

income and inadequate nutrition. Legislation: Child Nutrition Act of 1966 as amended; P.L. 95-627. Funding: FY 1980 Appropriations: $758.0 m.

2) Food Stamps

Placement: Food and Nutrition Service, Department of Agriculture. Description: Direct payments to low-income households for specified use to improve their diets by supplementing their food

purchasing ability. Also, Federal Support for State Ad- ministrative costs incurred.

Legislation: Food Stamp Act of 1964; P.L. 95-113. Funding: FY 1980 Appropriations (includes Supplemental): $9.191 b.

3) Child Care Food Program

Placement: Food and Nutrition Service, Department of Agriculture. Description: Formula grants (also sale, exchange, or donation of property and goods) to assist public and nonprofit private organizations in maintaining or expanding nonprofit food

service programs for children in nonresidential institutions providing child care. Legislation: National School Lunch Act of 1966, Section 16, as

amended by P.L. 94-105, P.L. 95-627. Funding: FY 1980 Appropriations: $220.4 m.

4) School Breakfast Program

Placement: Food and Nutrition Service, Department of Agriculture. Description: Formula grants (also sale, exchange, or donation of property and goods) to reimburse public and nonprofit private schools for nutritious breakfasts for school chil- dren.

Legislation: Child Nutrition Act of 1966, as amended; P.L. 94-105, P.L. 95-166, P.L. 95-627. Funding: FY 1980 Appropriations: $261.4 m.

117
Special Meal Assistance

Placement:

Description:

Legislation:

Funding:

Food and Nutrition Service, Department of Agriculture.

Free and reduced in-house prices for lunches to needy

children. National School Lunch Act, as amended; P.L. 94-105,

P.L. 95-627.

FY 1980 Appropriations: $1.381 b.

6) National School 'Lunch Program

Placement:

Description:

Legislation:

Funding:

Food and Nutrition Service, Department of Agriculture. Formula grants (also sale, exchange, or donation of

property and goods) to assist States in making the school

lunch program available to school children. National School Lunch Act of 1966, as amended; P.L.

94-105, P.L. 95-166, P.L. 95-627. FY 1980 Appropriations: $734.7 m.

7) Special Milk Program for Children

Placement:

Description:

Legislation: Funding:

8)

Food and Nutrition Service, Department of Agriculture. Formula grants to encourage the consumption of fluid

milk by children of high school grades and under through

reimbursement to eligible schools and institutions which

inaugurate or expand milk distribution services.

Child Nutrition Act of 1966, as amended; P.L. 95-166.

FY 1980 Appropriations: $142.0 m.

Summer Food Service for Children

Placement:

Description:

Legislation:

Funding:

9) Nutrition

Placement:

Description:

118

Food and Nutrition Service, Department of Agriculture.

Formula grants to States (also sale, exchange, or donation

of property and goods) for maintaining and expanding

nonprofit food service programs for children in service

institutions and summer camps during the summer

months. National School Lunch Act of 1966, Section 13; as

amended by P.L. 94-105, P.L. 95-166, P.L. 95-627.

FY 1980 Appropriations: $88.8 m.

Studies; Education and Training

Food and Nutrition Service, Department of Agriculture.

Formula grants to State educational agencies to provide

for the nutrition-related training of educational and food

service personnel, the food service management training

of school food service personnel, and the conduct of

nutrition education activities.

7
Legislation: Child Nutrition Act of 1966, Section 9, as amended; P.L.

Funding: FY 1980 Appropriations: $21.7 m.

10) State Administrative Expenses for Child Nutrition

Placement:

Description:

Legislation:

Funding:

Food and Nutrition Service, Department of Agriculture. Formula grants to provide State educational agencies with funds to cover administrative expenses for supervising

and giving technical assistance to local school districts and institutions in their conduct of child nutrition

programs. Child Nutrition Act of 1966, Section 7, as amended; P.L. 90-302, P.L. 91-248, P.L. 95-166, P.L. 95-627. FY 1980 Appropriations: $34.87 m.

11) Equipment Assistance for School Food Service Programs

Placement:

Description:

Legislation:

Funding:

12) Regional Projects

Placement:

Description:

Legislation:

Funding:

Food and Nutrition Service, Department of Agriculture. Formula grants to enable States to supply schools in low- income areas with equipment for storing, preparing, transporting, and serving food to children. Child Nutrition Act of 1966 as amended; P.L. 95-166, P.L. 95-627.

FY 1980 Appropriations: $20.0 m.

Commission Health and Nutrition Demonstration

Coastal Plains, Four Corners, Ozarks, Upper Great Lakes, and Old West Regional Commissions. Project grants for planning, construction, equipment, and operation of multicounty demonstration health and nutrition projects. Public Works and Economic Development Act of 1965, Title V, Section 516, P.L. 89-136 as amended by P.L. 94-185.

FY 1980 Appropriations: $5.39 m.

13) Community Food and Nutrition

Placement:

Description:

Legislation:

Funding:

Community Services Administration. Project grants, contracts, and training to supplement, extend, and broaden other food programs and to provide, on an emergency basis, food to low-income families or

individuals.

Economic Opportunity Act of 1964, Title II, as amended; P.L. 95-568.

FY 1980 Appropriations: $27.0 m.

119
B., CHILD DEVELOPMENT AND EDUCATION PROGRAMS

1) Head Start

Placement: Administration for Children, Youth, and Families, Office

of Human Development Services, Department of Health

and Human Services.

Description: Project grants to provide comprehensive health, educational, nutritional, social, and other services to children,

primarily 3 years old to school age, and their families who

are economically disadvantaged. Parental involvement is

emphasized.

Legislation: Head Start Economic Opportunity and Community Partnership Act of 1974; P.L. 93-644, Title V, Part C, as

amended.

Funding: FY 1980 Appropriations: $735.0 m.

2) Follow Through

Placement: Office of Elementary and Secondary Education, Department of Education.

Description: Formula grants and project grants to sustain and augment

in primary grades, the gains made by children of lowincome families in Head Start. Children receive special

instruction, health, nutrition, and other services. Parental

involvement is stressed.

Legislation: Economic Opportunity Act of 1964, as amended by P.L.

95-568, Economic Opportunity Amendments of 1978.

Funding: FY 1980 Appropriations: $44.25 m.

3) Educationally Deprived Children of Migrants

Placement: Division of Migrant Education, Office of Elementary and

Secondary Education, Department of Education.

Description: Formula grants to State educational agencies to expand

and improve programs to meet the needs of migratory

workers and fishermen. Programs include remedial instruction, health, nutrition, psychological services, cultural development, and prevocational training

Legislation: Elementary and Secondary Education Act of 1965 as

amended; P.L. 89-10 and P.L. 89-750, as amended by

P.L. 95-561.

Funding: FY 1980 Appropriations: $245.0 m.

4) Improvement in Local Educational Practice

Placement: Office of Elementary and Secondary Education, Department of Education.

Description: Formula grants to local educational agencies to improve

their educational practices, including health and nutrition

120
programs. Fifteen percent is set aside for children with

special needs and handicapped children or those with

learning disabilities. Legislation: Elementary and Secondary Education Act, Title IV, as

amended by P.L. 95-561. Funding: FY 1980 Appropriations: $146.0 m.

5) Alcohol imd Drug Abuse Education Program

Placement: Office of Educational Research and Improvement, De- partment of Education. Description: Project grants used for developing problem-solving tech- niques to reduce alcohol and drug abuse. Designed to

promote awareness and understanding of the problems and to treat causes rather than symptoms. Legislation: Alcohol and Drug Abuse Education Act; P.L. 95-336. Funding: FY 1980 Appropriations: $3.0 m.

b) Drug Abuse Education Programs

Placement: Alcohol, Drug Abuse and Mental Health Administration, Public Health Service, Department of Health and Human Services.

Description: Project grants to collect, prepare, and disseminate infor- mation dealing with the use and abuse of drugs and the prevention of drug abuse. Legislation: Drug Abuse Office and Treatment Act of 1972; P.L. 92-255 as amended.

Funding: FY 1980 Appropriations: (Combined with Community Programs).

7) Cooperative Extension Service

Placement: Science and Education Administration, Department of Agriculture. Description: Formula grants to States to provide educational programs

including parent education and child development. Legislation: Smith Lever Act as amended; Rural Development Act of 1972; Food and Agricultural Act of 1977. Funding: FY 1980 Appropriations: $285.54 m. (Includes Expanded Food and Nutrition Education Program for low-income

families, $51.81 m).

8) Appalachian Child Development

Placement: Appalachian Regional Commission. Description: Funds to create State and sub-State capabilities in

planning child development programs in order to provide

services to underserved areas throughout the region and

to test innovative projects and programs.

121
Legislation: Appalachian Regional Development Act of 1965, Section

202, as amended; P.L. 89-4.

Funding: FY 1980 Expenditures: $11.2 m. (Appropriations not

earmarked for Child Development).

C. SPECIAL SERVICES FOR HANDICAPPED CHILDREN

1) Handicapped Preschool and School Programs

Placement: Office.. of. Special Education and Rehabilitative Services,

Department of Education.

Description: Formula grants to States to assist in providing a free

appropriate education to all handicapped children.

Legislation: Education of the Handicapped Act, Title VI, Part B as

amended by P.L. 94-142, as amended by the Education

Amendments of 1978.

Funding: FY 1980 Appropriations: State Grant Programs, 5-18 yrs.

old, $874.50 m.; Preschool Incentive Grants, $25.0 m.

2) Handicapped Special Population, Early Childhood Education

Program

Placement: Office of Special Education and Rehabilitative Services,

Department of Education.

Description: Project grants to support experimental demonstration,

outreach, and State implementation of preschool and

early childhood projects for handicapped children and

their parents from birth through 8 years of age.

Legislation: Education of the Handicapped Act, Title VI, Part C, as

amended by P.L. 95-49.

Funding: FY 1980 Appropriations: $20.04 m.

3) Special Population Programs for the Severely Handicapped

Placement: Office of Special Education and Rehabilitative Services,

Department of Education.

Description: Project grants and contracts to develop innovative approaches to education, training, and services to severely

handicapped children and youth in det'istituti malized or

integrated settings.

Legislation: Education of the Handicapped Act, Title VI, Part C, P.L.

91-230.

Funding: FY 1980 Appropriations: $5.92 m.

4) Handicapped Regional Resource Centers

Placement: Office of Special Education and Rehabilitative Services,

Department of Education.

Description: Project grants to pay all or part of the cost of establishing

or operating regional resource centers to provide advice and technical services to educators to improve the

education of the handicapped.

122 31
Legislation: Education of the Handicapped Act, Title VI, Part C; P.L.

91-230.

Funding: FY 1980 Appropriations: $9.76 m.

5) Handicapped Media Services and Captioned Films

Placement: Office of Special Education and Rehabilitative Services,

Department of Education.

Description: Project grants to provide for acquisition and distribution

of media materials and equipment, for research into use of

media, and for training of teachers, parents, and others in

media utilization. A free loan library service of captioned

films is maintained.

Legislation: Education of the Handicapped Act, Title VI, Part F; P.L.

91-230, P.L. 94-142.

Funding: FY 1980 Appropriations: $19.0 m.

6) Handicapped Innovation and Development

Placement: Office of Special Education and Rehabilitative Services,

Department of Education.

Description: Grants and contracts for model programs, research, and

development activities.

Legislation: Education of the Handicapped Act, Title VI, Part E, as

amended by P.L. 95-49.

Funding: FY 1980 Appropriations: $19.91 m.

7) Handicapped Recruitment and Information

Placement: Office of Special Education and Rehabilitative Services,

Department of Education.

Description: Project grants and contracts to enable public or private agencies or institutions to help parents and consumer

groups provide information and referral services, to

recruit potential teachers, and to encourage schools to

respond to special needs of handicapped children.

Legislation: Education of the Handicapped Act, Title VI, Part D, P.L.

91-230.

Funding: FY 1980 Appropriations: $1.0 m.

8) Handicapped Special Education Personnel Development

Placement: Office of Special Education and Rehabilitative Services,

Department of Education.

Description: Project grants to improve the quality of and increase the

supply of regular educators, physical education or recreation teachers, paraprofessionals, and other support personnel to maintain handicapped children in an appropriate school setting.

132

123
Legislation:

Funding:

9) Education Supported

Placement:

Description:

Legislation:

Funding:

10) Centers

Placement:

Description:

Legislation:

Funding:

11) Centers

Placement:

Description:

Legislation: Funding:

124

Education of the Handicapped Act, Part F, as amended

by the Education Amendments of 1974 and 1976. FY 1980 Appropriations: $55.38 m.

of the Handicapped Children in State-Operated or Schools

Office of Special Education and Rehabilitative Services, Department of Education. Formula grants to States to extend and improve compre- hensive educational programs for handicapped children

enrolled in State-operated or State-supported schools. Elementary and Secondary Education Act of 1965 as

amended by P.L. 89-313, P.L. 93-380, P.L. 94-142. FY 1980 Appropriations: $144.0 m.

and Services for Those with Developmental Disabilities

Office of Human Development Services, Department of Health and Human Services.

Project grants and formula grants to States to provide

comprehensive services for persons with developmental disabilities, promote public awareness and provide infor- mation, improve quality and coordination of services, establish demonstration projects, and provide training for

those working in developmental disability. Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963; P.L. 88-164, as amended by P.L. 91-517, P.L. 94-103, P.L. 95-602, Title V.

FY 1980 Appropriations: State Grants and Advocacy, $50.68 m.; Service Projects, $4.76 m.; University Affili- ated Facilities, $7.0 m.

and Services for Deaf-Blind Children

Office of Special Education and Rehabilitative Services, Department of Education. Project grants and contracts to support the establishment of model single and multi-State centers to provide deaf- blind children with comprehensive diagnostic and evalu- ation services, education and orientation programs, and

effective consultive programs for their parents and teachEducation of the Handicapped Act, Title VI, Part C. FY 1980 Appropriations: $17.12 m.

133
12) Vocational Rehabilitation Services for Supplemental Security

Income Beneficiaries

Placement: Office of Human Development Services, Department of Health and Human Services.

Description: Formula grants to States to provide necessary rehabilitative services to recipients of Supplemental Security In- come (SSI) to enable them to attain or return to gainful employment. Legislation: Social Security Amendments of 1972, Title XVI, Parts A

and B; P.L. 92-603; P.L. 93-66, P.L. 93-233, P.L. 93-368, P.L. 94-556, P.L. 94-569, and P.L. 94-585. Funding: FY 1980 Appropriations: $56.2 m.

D. SOCIAL SERVICES

1) Title XX

Placement: Office of Program Coordination and Review, Office of Human Development Services, Department of Health and Human Services.

Description: Grants to States for health and health-related services

such as family counseling and mental health services, services for developmentally and physically handicapped, prenatal services for parents, transportation, screening

and diagnosis of children not eligible for Medicaid, family

planning services, and day care for children. Legislation: Social Security Act, Title XX. Funding: FY 1980 Appropriations: $2.7 b.

2) Child Welfare Research and Demonstration Projects

Placement: Children's Bureau, Administration for Children, Youth, and Families, Office of Human Development Services, Department of Health and Human Services. Description: Project grants and research contracts to provide support for research and demonstration in child and family

development and welfare, including "Education for Par- enthood" and comprehensive programs for pregnant

teenage girls. Legislation: Social Security Act, Title IV-B. Funding: FY 1980 Appropriations: $14.7 m.

3) Child Abuse and Neglect Prevention and Treatment

Placement: National Center for Child Abuse and Neglect, Office of Human Development Services, Department of Health and Human Services.

1 3

125
Description: Project grants and research contracts to provide technical assistance to public and private nonprofit agencies and

organizations; demonstration programs and projects to

establish and maintain centers providing parent and self help, identification, and treatment of child abuse and to

support research into the causes, prevention, and treat- ment of child abuse and neglect. Legislation: Child Abuse Prevention and Treatment Act, Title I, as

amended; P.L. 93-247. Funding: FY 1980 Appropriations: $22.93 m.

126
APPENDIX B

ACK/sTOWLEDGMENTS

A number of people contributed to the Panel's work in reviewing and analyzing various Federal programs affecting maternal and child health. These include staff members of the Departments of Health and Human Services, Education, and Agriculture, State program officials, individuals associated with advocacy and professional organizations, and others with special knowledge of the policy and program issues surrounding the delivery of health services to children and pregnant women. All go ve freely of their time and expertise. To each of them, the Panel wishes to express its profound gratitude.

Nancy Amidei Virginia Bauch

Joseph Beck Preston Bruce

John Corn= Ily Betty McGarvie Crowley Ezra Davidson

George Degn.on Toni Eaton

Michael Fishman

Rachel Gold

Robert L. Goldenberg Stanley Greenspan Stephan Harvey Elizabeth R. 1-1ilder

Eileen Kennedy Asta Kenney Gloria Kilgore

Jane Knitzer

Linda Kouvillion

Wendy Lazarus

Victoria Levin

Linda Martens

Garry McDaniels Merle McPherson

Regina McPhillips Edward P. Melia

Willamine Miller

Lynn Parker George Pickett Sara Rosenbaum

Gail Rosenthal

Jeannie Rosoff

Jerry Silverman Michael Sizuki

Larry Sparks Nancy Stone Lisa Walker

Robert Heneson Walling

Judith Weitz

Daniel Yolaalem

136. 127
APPENDIX C

DISSENTING VIEWS

John Mac Queen, M.D., Vice Chairperson. State Services for Crippled Children University of Iowa

Dr.. Mac Queen dissents from the Panel's recommendation that the majority, of members on the proposed State Maternal and Child Health, Councils be consumers, or nonhealth professionals. (Chapter.2: Title V.) Dr.' MacQueen also disagrees with the recommendation that the Title V formula grant to States be awarded as a single grant, with funds for Maternal and. Child Hgth and Gripped Children's

services combined. (Chapter 2: Title 77.)

John Palmer, Ph.D.

Assistant Se:cretary for Pliuming and Evaluation Department of Health and Human Services

I. Dr. Palmer dissents from the Panel's recommendation regarding

the formula by which Title V funds would be apportioned

between Federal and State functions. In particular, he believes

that because the proposed mechanisms for accountability are

untested and there traditionally is a reluctance to withhold

formula grant funds from States, a significant portion ofany new

funds appropriated to Title V should be distributed as discretion- ary incentive grants to States. (Chapter 2: Title V.) 2. Dr. Palmer also disagrees with the recommendation that the Bureau for Maternal and Child Health Services be created by

legislation, as he believes that such matters should be left to the discretion of the Secretary. (Chapter 2: Title V.)

Charlotte Wile,* Foundir. ....uperson, Council on Maternal and Infant Health State of Georgia

1. Mrs. Wilen, like Dr. MacQueen, dissents from the recommendation that there be a majority of consumers on the proposed State Maternal and Child Health Advisory Councils. She believes the Health Systems Agencies are the appropriate vehicle for consum- er input. In her view, the State councils should be comprised of members of various professions providing maternal and child

137

129
130

health care, assuring an equal number of public and private health care consumers to the number of physicians from the public, private, and academic health arenas. Members should

also represent nutrition, social work, hospital administration,

and education. (Chapter 2: Title V.)

2. Mrs. Wilen objects to the Panel's statement that the Title V

funding formula unfairly favors rural States over large industrial States, citing a recent survey conducted by the Alabama director of Maternal and Child Health which suggests that the costs of

providing health care in rural areas are considerably higher than

in urban areas. Accordingly, she objects to the recommendation

that the formula be revised in order simply to reflect relative

need among the States. (Chapter 2: Title V.)

1 3

* U.S. GOVERNMENT PRINTING OFFICE 1981 0 - 339-243 (Vol. II)