Report to the President 

The National Effort to Prevent Mental Retardation 

and Related Developmental Disabilities 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Administration for Children and Families 

President's Committee on Mental Retardation 

Washington, DC 20201 

1993 
DISCLAIMER STATEMENT 

Information contained in this Annual Report of the President's 

Committee on Mental Retardation (PCMR), entitled Report to the 

President: The National Effort to Prevent Mental Retardation 

and Related Developmental Disabilities was researched, 

collected and analyzed by experts in the field of mental 

retardation prevention for the PCMR Summit on the National 

Effort to Prevent Mental Retardation and Related 

Disabilities, under contract with the U.S. Department of 

Health and Human Services, Administration for Children and 

Families, President's Committee on Mental Retardation. 

Report to the President: The National Effort to Prevent Mental

Retardation and Related Developmental Disabilities summarizes 

the research findings, analyses, and opinions of prevention 

experts who participated in the Summit on the National Effort 

to Prevent Mental Retardation and Related Disabilities, and 

does not necessarily reflect the views of the President's 

Committee on Mental Retardation or any agency within the U.S. 

Department of Health and Human Services. 
THE SECRETARY OF HEALTH AND HUMAN SERVICES 

WASHINGTON. D.C. 20201 

SEP 30 1993 

The President 

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

I am pleased to transmit to you the Annual Report of the President's Committee on 

Mental Retardation (PCMR), entitled The National Effort to Prevent Mental 

Retardation and Related Developmental Disabilities. The report highlights recent 

and current research findings, the breadth of Federal 

involvement in the national effort to prevent and 

ameliorate the effects of mental retardation, exemplary 

State and local prevention planning and programs, and 

significant contributions of private and public sector 

agencies, organizations, foundations, and institutions. 

It focuses on a national plan of action to prevent the 

"new morbidity"...economically induced health, 

environmental, medical, social, cultural and educational 

factors that in any combination render infants and 

children at risk for developing mental retardation 

and/or related disabilities. 

The report provides a summary of the contributions of 

experts in the field of mental retardation and 

developmental disabilities prevention who participated at 

the PCMR-sponsored Summit on the National Effort to Prevent 

Mental Retardation and Related Developmental Disabilities, 

convened February 6-7, 1991, in Washington, D.C. Cosponsors of the Summit included the U.S. Department of 

Health and Human Services, the American Academy 

of Pediatrics, and the U.S. Department of Education. 

The President's Committee on Mental Retardation first 

addressed the national effort to combat mental 

retardation through formal State planning for 

prevention six years ago. The National Conference on 

State and Territorial Planning for the Prevention 
Page 2 - The President 

of Mental Retardation and Related Disabilities was 

convened by the PCMR in 1987 "to stimulate renewed 

commitment to a national effort to prevent mental 

retardation and related disabilities. The Conference 

provided a forum that facilitated State and territorial 

success in conceptualizing, developing, implementing, and/or 

enhancing formal plans to prevent these disabilities." 

The 1991 PCMR-sponsored Summit on the National Effort to 

Prevent Mental Retardation and Related Disabilities was held 

as follow-up to the 1987 conference "to assess the adequacy 

of the national effort to prevent mental retardation and 

related disabilities, and chart the course for future 

strategies to reduce the incidence and ameliorate the 

effects of these disabilities, particularly when caused by 

socioeconomic conditions." This annual report provides a 

summary of current research findings, exemplary State 

planning and programs, issues and concerns, and 

recommendations regarding prevention and amelioration of 

the effects of mental retardation and related disabilities. 

It is my hope that the information in this report proves 

useful as our nation intensifies efforts to prevent 

disabilities, particularly in infants and children. 

Sincerely, 

Donna E. Shalala 

Enclosure 
TABLE OF CONTENTS 

TOPIC PAGE

Preface i 

Acknowledgements iii 

Executive Summary 1 

The Future 4 

The Breadth of Federal Involvement 21 

Action in State Programs 31 

Recommendations 38 

Status and Adequacy of the National 42 

Effort 

Agencies, Organizations, Foundations, 45 

and Institutions 

Appendices 47 

Appendix A -- PCMR April, 1993 

Appendix B -- PCMR Executive Committee and 

 Subcommittee Membership 

Appendix C -- PCMR February, 1991 

Appendix D -- Prevention Summit Program 

 Participants and Exhibitors 

PREFACE 

The President's Committee on Mental Retardation was established 

by Executive Order 11280 on May 11, 1966, to provide continuing 

advice and assistance to the President and to the Secretary of 

the Department of Health and Human Services on all matters 

pertaining to mental retardation. The Committee is comprised of 

the Secretary of Health and Human Services, who serves as 

Chairperson, the Attorney General of the United States, the 

Secretary of Education, the Secretary of Labor, the Secretary of 

Housing and Urban Development, the Secretary of Transportation, 

the Director of ACTION, and 21 citizen members appointed by the 

President. 

The Executive Order of May 11, 1966 establishing the President's 

Committee on Mental Retardation directs the Committee to submit 

"such reports or recommendations to the President concerning 

mental retardation as he may require or the Committee may deem 

appropriate. Such reports shall be made at least once annually." 

The Annual Reports have helped the Committee fulfill its mandated 

function to "develop and disseminate such information as will 

tend to reduce the incidence of mental retardation and ameliorate 

its effects." 

Consequently, this report entitled Report to the President: 

The National Effort to Prevent Mental Retardation and Related 

Developmental Disabilities is a direct outgrowth of the 

Committee's activities as specified in the Presidential Order and 

the Charter. It is also the result of continuing interest and 

efforts of Committee members and staff who have been active 

participants on the PCMR Prevention Subcommittee. 

The President's Committee on Mental Retardation has provided 

leadership in the national effort to minimize the occurrence of 

mental retardation. The Committee convened in February, 1987, 

the first National Conference on State Planning for the 

Prevention of Mental Retardation and Related Developmental 

Disabilities. Subsequent to the Conference, PCMR developed and 

widely disseminated a Guide to State Planning for the Prevention 

of Mental Retardation and Related Disabilities and a companion 

document, Preventing the New Morbidity: A Guide for State 

Planning for the Prevention of Mental Retardation and Related 

Disabilities Associated with Socioeconomic Conditions. The 

Committee has also catalyzed Federal, State and local efforts to 

prevent and ameliorate the effects of mental retardation. Two 

PCMR-sponsored national conferences within a four year period 

called attention to the urgent need for State and territorial 

planning to prevent mental retardation and related disabilities. 

i 
PREFACE - (Con't) 

The February, 1987 National Conference on State Planning 

stimulated commitment to a national effort to prevent mental 

retardation and related disabilities. The two hundred fifty 

conference participants included prevention planners, service 

providers, advocacy group representatives, educators, 

researchers, health officials, legislators, and Federal and State 

government officials who came from 33 States, 3 territories and 

the District of Columbia. They represented prevention programs 

based in urban and suburban communities, and in rural counties 

and townships. The State and territorial participants 

deliberated and were provided technical assistance intended to 

facilitate their success in conceptualizing, planning, 

implementing, and/or enhancing State plans for the prevention of 

mental retardation. 

The February, 1991 PCMR-sponsored Summit on the National Effort 

to Prevent Mental Retardation and Related Disabilities addressed 

the adequacy of the national effort to prevent mental retardation 

and related disabilities, and charted the course for future 

strategies to reduce the incidence and ameliorate the effects of 

these disabilities, particularly when caused by socioeconomic 

conditions. This international, interdisciplinary meeting 

included heads of Federal agencies, representatives of Governors' 

offices and Developmental Disabilities Planning Councils, health 

officials, prevention planners, service providers, consumer 

advocates, educators, researchers, and legislators. The 

conference participants came from thirty of the continental 

United States, the District of Columbia, South Africa, Saipan and 

Mariana Islands. The Summit facilitated interdisciplinary 

efforts of professionals and constituency groups to contribute 

to the development of a comprehensive national plan to reduce 

incidence rates in mental retardation and related disabilities 

by improving options for mothers, infants, and children. This 

working Summit featured technical presentations by renowned 

leaders in the field; stimulating work group sessions that 

addressed key issues that impact prevention initiatives at the 

national, regional, State and community levels; discussion by 

agency executives of interagency approaches and options to 

prevent disability; and practical recommendations believed to 

be both realistic and achievable. 

The technical papers, deliberations, recommendations and other 

relevant proceedings of the 1991 Summit on the National Effort to 

Prevent Mental Retardation and Related Disabilities comprise the 

basic content of this Annual Report. 

ii 
ACKNOWLEDGEMENTS 

Members and staff of the President's Committee on 

Mental Retardation acknowledge the leadership and 

support of Dr. Albert L. Anderson, Committee Vice 

Chairperson, and Dr. William Kerby Hummer, former 

Chairperson of the PCMR Prevention Subcommittee, in 

convening the Summit on the National Effort to Prevent 

Mental Retardation and Related Disabilities. 

The Committee also wishes to give special acknowledgement to the 

National Coalition on Prevention of Mental Retardation for 

providing consultation, fiscal and personnel support during the 

planning of the Summit, and invaluable assistance during the 

implementation of the conference. 

The PCMR recognizes the contributions made by participants in the 

1991 Summit on the National Effort to Prevent Mental Retardation 

to the success of the Summit. The speakers, exhibitors, work 

group leaders, facilitators and recorders, and many of the 

audience participants are nationally renown leaders in the field 

of mental retardation, prevention, pediatrics, and early 

childhood development. The expert presenters of technical papers 

made particular contributions to the development of this Annual 

Report by providing updated information reflecting the current 

status of the national effort to prevent mental retardation and 

related disabilities. 

The President's Committee on Mental Retardation recognizes with 

special appreciation the fiscal and personnel support provided by 

the following public and private sector agencies in co-sponsoring 

the Summit proceedings that form the basis of this report: 

The American Academy of Pediatrics (AAP); 

The National Institute of Disability and Rehabilitation 

Research, U.S. Department of Education; and 

The U.S. Department of Health and Human Services—- 

Administration for Children, Youth, and Families (ACYF); 

Administration on Developmental Disabilities (ADD); 

Administration on Aging (AoA); 

Centers for Disease Control (CDC), Division of Birth 

Defects and Developmental Disabilities; 

National Institute of Child Health and Human Development 

(NICHD); 

Office of Disease Prevention and Health Promotion (ODPHP); 

Office of Policy, Planning and Legislation (OPPL) now known 

as the Office of Policy and Evaluation (OPE); and 

Social Security Administration (SSA). 

iii 
ACKNOWLEDGEMENTS - (Con't) 

Finally, the PCMR acknowledges the contributions of former and 

current Committee members, especially members of the Prevention 

Subcommittee, who worked to facilitate the success of the Summit. 

The PCMR also recognizes the support of the dedicated staff for 

the proficiency, efficiency and cooperative spirit with which 

they assumed responsibilities necessary for successful 

implementation of the Summit. Special note is taken of the 

support given by Susan Gleeson, R.N., and Sambhu N. Banik, Ph.D., 

former Executive Directors of the PCMR. 

iv 
EXECUTIVE SUMMARY 

The President's Committee on Mental Retardation (PCMR) Conference in 

February, 1991, "Summit on the National Effort to Prevent Mental Retardation 

and Related Disabilities," was the programmatic highlight of the Committee's 

25th Anniversary in 1991. The selection of the topic of prevention for this 

jubilee event was exceedingly fitting, inasmuch as the PCMR has through this 

quarter century been a continuing voice for the potential of prevention and its 

humanistic implications. The Committee has been unique in its devotion to 

bringing together the nation's diverse agencies, centers, and spokespersons 

concerned with prevention of mental retardation and developmental disabilities. 

Ten plenary speakers on the topical aspects of prevention provided a 

richness of experience and commitment. For the purposes of this Annual 

Report, material has been excerpted from their presentations dealing specifically 

with aspirations for the future of the field. Taken in the sum these notes offer 

substantial hope, while also speaking of a requirement for enhanced resolve. 

When added to the recommendations developed by the conference work groups 

it becomes clear that there is much to be done. 

Duane Alexander, in his Keynote Address, looked positively at recent 

research, and expressed anticipation for applications of gene therapy, fetal 

therapy, and potentiation of regeneration within the central nervous system. 

Hugo Moser, in the Statement of Occasion, stressed the need for greater 

accuracy in diagnosis of the origins of mental retardation, for appropriate use of 

the Deoxyribose nucleic acid (DNA) studies, and for a search for the biologic 

basis of learning disabilities. Godfrey Oakley presented a concept of 

"prevention epidemiology," and recommended a network of epidemiology 

centers with this orientation. The effort to produce the encompassing objectives 

of "Healthy People 2000" was described by Ashley Files, noting their particular 

orientation to decreasing the outcome disparities in many health areas now 

experienced by minority citizens. Allen Crocker reviewed the ambitious 

recommendations brought forward by the Institute of Medicine's "National 

Agenda for Prevention," and expressed the belief that workers involved with 

mental retardation could find the right plans there. 

Alfred Baumeister recounted his comprehensive conception of the "New 

Morbidity" and its threats to young persons. As he states, "Politics, poverty, 

and disadvantage have extracted a terrible toll on our children." Edward Zigler 
summarized our need for creative early education for children at risk. The 

challenge represented by "chemically dependent families" was addressed by Judy 

Howard, who felt that effective corrective services can be designed. Herbert 

Cohen spoke of the multifactorial needs of children with congenital Human 

Immunodeficiency Virus (HIV) infection, and the personnel training requirements 

to provide for them. Travis Thompson reminded us that "Tackling problems 

associated with poverty is not a challenge for the faint of heart. The time is overdue 

that we stop shrinking from our responsibilities." 

The breadth of Federal involvement in prevention activities was presented by 

the leaders of nine agencies. Services for women and children, Head Start, family 

assistance, and early childhood education were among the many areas reported. 

The conferees divided into five work groups to reflect on the material 

offered. They produced a list of 25 recommendations, dealing with research 

requirements (for improvement of the knowledge base), basic supports for all families 

(to assure egalitarian access for life needs), and improved planning for prevention (for 

thoughtful mobilization of resources). The conference recommendations address 

the need for research in etiology and epidemiology, mandatory curricula in 

preparation for parenthood, "consumer-friendly" services to remove barriers, 

assistance in employment, housing, and environment, and universal health 

insurance. They also seek more consumer-based planning, and meaningful 

interagency alliances. 

The President's Committee invited four States to present illustrations of 

exemplary programs in prevention. These programs involved outreach childbirth 

education (Florida), prevention of adolescent and unwanted pregnancy (Iowa), 

prevention of lead poisoning (New Jersey), and enhancement of public awareness 

(California). 

As an epilogue some notes are offered on the adequacy of our current 

national effort on prevention of mental retardation and developmental 

disabilities. In this regard, kudos are given for many important successes 

regarding disability of biomedical origin, but alarm expressed that new 

liabilities appear to be mounting, relating especially to the role of social 

disadvantage. Many indicators of child health and developmental potential are 

not improving, including low birthweight rates, the racial disparity in infant 

2 
mortality rates, teenage fertility rates, substance abuse in pregnancy, birth 

incidence of HIV infection, and reports of child abuse. Conferees expressed 

appreciation for the Disability Prevention Program of the Centers for Disease Control 

(CDC), now known as the Centers for Disease Control and Prevention (CDC), which 

has already provided aid to 28 States. It is clear, however, that a larger national 

commitment is needed, with special emphasis on creative social programs. 

3 
THE FUTURE 

In reviewing the materials and discussions of the 1991 25th Anniversary 

conference, the "Summit on the National Effort," it seems especially appropriate 

for the President's Committee on Mental Retardation to seek out the vision of the future 

as revealed during that landmark PCMR occasion. The speakers had much to say 

about the future, with particular ideas on scientific research, data collection, planning 

for vulnerable populations, public program administration, priority setting, new 

considerations for very young children, social reform, and personnel preparation. 

These recent ideas of theirs remain very cogent; direct excerpts will be given from 

the Proceedings, so that the Conference faculty can indeed "tell it in their own 

words." And then the future Recommendations of the Work Groups will be looked at 

again, where many of the assertions appear in more operational format. 

In his Keynote Address, Duane Alexander, Director of the National Institute 

of Child Health and Human Development, spoke of achievements in prevention of 

mental retardation of biomedical origin, in the areas of Phenylketonuria (PKU), 

congenital hypothyroidism, Rh disease, measles encephalitis, and rubella 

encephalopathy. The importance of new diagnostic understanding was mentioned 

(such as Rett syndrome and urea cycle disorders), and current work was reported on 

Hemophilus influenza vaccine, medications to reduce the effects of 

hyperbilirubinemia and of cerebral anoxia, new understanding of the cytogenetics of 

Down Syndrome, and dietary intervention for adrenoleukodystrophy was reported. 

What about future directions in mental retardation-developmental 

disabilities (MRDD) research? Talking about this is very risky, because science is 

moving so fast that what you call the future often turns out to have been done 

yesterday. 

Gene Therapy. A case in point, and one of the most exciting frontiers ever in 

medicine, is gene replacement therapy. The future is here, and you in the field 

of MRDD have the good fortune to be right in the middle of it. On Thursday, 

September 14, 1990, at the National Institutes of Health (NIH) Clinical Center 

in Bethesda, a 4-year-old girl with Severe Combined Immune Deficiency 

(SCID) became the world's first patient to have her disorder treated with gene 

replacement. Doctors earlier had removed some 

4 
of her blood, separated out the white blood cells, and used a virus vector to carry 

into those cells the gene for making the enzyme adenosine deaminase (ADA) that 

she was born without. The gene entered the Deoxyribose nucleic acid (DNA) of 

some of those cells and started producing ADA. Last September 14 those cells 

were injected into the patient, and she will be monitored to see how well these cells 

continue to produce ADA. A total of 10 children will be included in this protocol, 

the most extensively and critically reviewed clinical study ever undertaken. We 

should know in a few months if it is working, but there is little doubt that it will. It 

is not often you can talk about a new era in medicine, but this truly is one of the 

greatest steps forward in the history of humankind. If we can do it for SCID, we 

can do it for Lesch-Nyhan, Tay-Sachs, or any other genetic disorder for which we 

identify and clone the gene and provide correction before irreparable damage 

occurs. Many of the hundreds of genetic causes of MRDD where we have had 

nothing to offer before, will become amenable to treatment by this approach and 

the modifications of it that will surely come. 

Fetal Therapy. Another new frontier is fetal therapy, first begun in the 1960's by 

Liley with intrauterine transfusion for Rh disease, and most recently crossed by 

Mike Harrison and Mickey Bolbus with actual fetal surgery, in which the fetus is 

removed from the uterus, a congenital anomaly such as obstruction of the urinary 

tract or diaphragmatic hernia is corrected, and the fetus is returned to the uterus 

for the pregnancy to continue. These are heroic procedures, but there are other 

variants of fetal therapy that are coming that mean that we will at last have 

something to offer after fetal diagnosis other than genetic counseling and the 

option of pregnancy termination for fetal defect. At the recent Congress of the 

Transplantation Society, physicians from France reported success in treating 

fetuses with immune deficiency or thalassemia by injecting liver cells from 

aborted fetuses into the fetuses with the genetic defects. Although these studies 

will have to be replicated and confirmed, it is likely that this will be an effective 

means of fetal therapy for some genetic disorders. Another approach to fetal 

therapy is still in the animal study phase, and involves prenatal surgery to 

correct neural tube defects such as spina bifida or meningomyelocele to prevent 

paralysis. Neurologist John Freeman and neurosurgeon Dan Hafez postulated that 

the permanent neurologic damage from this lesion might be due to exposure of the 

bare spinal cord and nerves to toxic substances in amniotic fluid, and if the lesion 

were closed before the damage occurred, paralysis might be avoided. Working with 

a mouse model, Hafez has demonstrated that early closure of the meningomyelocele 

5 
in the fetus eliminates postnatal neurologic deficits. If this holds with other 

animals and carries over to humans, our screening of pregnancies with 

serum AFP and ultrasound for neural tube defects may result in the ability to 

correct the lesion prenatally and prevent neurologic complications. 

Neurobiology. The 1990's have been declared the "Decade of the Brain" by 

Congress and Presidential proclamation, and neurobiology represents 

another exciting frontier for the MRDD field. Discoveries relating to the 

programmed development of the Central Nervous System (CNS), 

abnormalities in nerve cell migration that could account for some forms of 

mental retardation, and discoveries that nerve cells can in fact regenerate in 

the brain and spinal cord, offer whole new fields for study and potential 

therapeutic application to mental retardation, spinal cord injury, cerebral 

palsy, and learning disabilities. This is one of the hottest and most exciting 

areas in all of medicine and biology, and once again you in the MRDD field 

are right in the middle of it. 

New Hazards and Challenges. Just when we seem to make progress against one 

disorder, another often appears to take its place. We eliminated PKU only to 

create maternal PKU. We are eliminating H.flu meningitis, but it appears its 

case numbers will be more than made up for by patients with congenital 

Acquired Immune Deficiency Syndrome (AIDS). As if that were not enough, 

the national cocaine epidemic promises to flood the MRDD field with "crack 

babies" showing signs and symptoms of brain damage due to their mothers' 

use of cocaine during pregnancy. Finding ways to manage the irritability, 

learning problems, and antisocial behavior of these children will challenge a 

whole generation of MRDD personnel. Add to that an increasing number of 

ever-smaller low birth weight babies who survive but with some neurologic 

impairment, and increasing number of babies born to unmarried teenage 

mothers and thus high-risk by definition, and rising rates of babies with 

congenital syphilis who are slipping through our screens, and you have an 

unending source of patients and topics for the MRDD research agenda as it 

addresses the new morbidity. 

Hugo Moser, Director of the Center for Research on Mental Retardation 

and Related Aspects of Human Development, at the Kennedy Krieger Institute, 

Johns Hopkins University, offered some similar predictions as part of his 

opening Statement of Occasion. 

Finally, I want to highlight some of the advances that I think can 

happen during the next decade. I would like to make a plea for precision of 

6 
diagnosis. We now know that there are more than 1,000 separate causes for 

mental retardation. We need to insist on the same degree of diagnostic accuracy 

as we now take for granted, say, in heart or kidney disease. Nobody would 

accept nowadays the statement that the patient has a "heart problem but we 

don't really know why and what does it matter anyway." Yet for mental 

retardation, this attitude still flourishes. I believe the point has come that we 

can take an active stance and insist on correct diagnosis, both because of the 

practical implications and because of the symbolism that we leave behind the 

therapeutic nihilism which has too much applied to this field. 

Secondly, I believe that during the next decade or perhaps a bit 

longer, all of the major causes of genetically determined mental retardation will 

be identifiable at the gene level with deoxyribose nucleic acid (DNA) studies. 

The implications of this are very hard to come to grips with. It will 

introduce an entirely new approach in respect to diagnosis and prevention. 

Gene therapy will become possible for some of the genetic causes of mental 

retardation. 

Another area that I am very excited about is that there are efforts which 

I believe will be successful to reduce the devastating effects of brain oxygen 

deprivation. At present, four minutes of oxygen deprivation to the brain leads 

to irremediable damage. If this can be ameliorated, the benefits in respect to 

perinatal damage and the effects of drowning would be incalculable. 

Lastly, I believe it will become possible to understand the biological basis 

of learning disabilities. In the field of vision, that has been determined, but I 

believe that the environmental, biological interactions which, if you will, are 

the basis of the New Morbidity, will become decipherable and that will have 

major effects on our ability to prevent and treat mental retardation. 

Godfrey Oakley, Director of the Division of Birth Defects and 

Developmental Disabilities, Centers for Disease Control and Prevention, U.S. 

Department of Health and Human Services, in Atlanta, spoke of the need to bring 

quantitative methods to the study of mental retardation. He has provided definitive 

leadership in the development of the field of "prevention epidemiology," defined as 

"the maintenance of a scorecard to monitor the progress of prevention efforts, 

etiologic research to identify leads for future 

7 
interventions, and prevention effectiveness research to ensure that proposed 

interventions are truly effective." For the future he urges a more systematic approach 

for data collection, study, consultation, and training. 

We believe that a network of prevention epidemiology centers--a 

structured Federally-supported program in which epidemiologic researchers can 

address scientific issues of importance to State and community prevention 

programs. This group would do the following: 

a. Develop common approaches to data collection and analysis that 

permit the monitoring of regional and temporal trends in the 

prevalence of critical childhood disabilities. 

b. Advise and consult with State- and community-based programs in the 

interpretation of the current science base. 

c. Develop epidemiologic methods for use by State- and communitybased prevention programs in improving efficacy and accountability. 

d. Conduct etiologic and prevention-effective research that have national 

significance. 

e. Provide epidemiologic training for personnel in State prevention 

programs. 

The network of prevention epidemiologic centers must establish programs 

with the critical mass to serve as a regional and national resource. We 

should start with existing programs that have already developed such a strong 

base of epidemiologic expertise and add others as resources permit. Additional 

Federal funding should supplement the primary support obtained from other 

sources. Participants in the network should also have access to rich data bases 

that could be used to address important questions in prevention epidemiology. 

Ashley Files, a Prevention Policy Advisor at the Federal Office of Disease 

Prevention and Health Promotion, U.S. Department of Health and Human Services, 

made major contributions to development of the Healthy People 2000 objectives. 

She described the methods for achievement of public and agency consensus as the 

objectives were framed. Three summary goals 

8 
were formulated; two of them speak to critical issues in the outlook for prevention 

efforts: "To reduce health disparities among Americans," and "To achieve access to 

preventive services for all Americans." 

Each of these goals is supported by the 300 specific objectives 

continued in Healthy People 2000, but probably none is so well supported as 

the disparity goal. In addition to the objectives, Healthy People 2000 includes 

just over 300 "special population targets." These targets were made part of 

the objectives whenever an identifiable gap between the total population and a 

particular subgroup could be identified. For example, there are about 60 

special population targets for blacks (in such areas as coronary heart disease 

and infant mortality), 30 for Hispanics (in such areas as diabetes and health 

services receipt), and 25 for people with low incomes (in such areas as high 

quality preschool and lead poisoning). These targets highlight the necessity of 

targeting programs to people in the greatest need. Further, as progress toward 

the objectives is tracked over the decade, the special population targets will 

keep the issue of disparity before the Secretary of Health and Human Services, 

the Assistant Secretary for Health, our Public Health Services (PHS) Agency 

Heads, Congress, and advocacy groups. Taken together, the goals of Healthy 

People 2000 assert that it is not sufficient to improve the "average health" of 

Americans. Real progress must be measured by assessing the health status of 

all groups within society and leaving no group out of that progress. 

My earlier points about the process we used to set the objectives, the 

overarching goal of reducing disparities, are particularly relevant for 

reducing the "New Morbidity." First, the New Morbidity is not entirely a 

health care/treatment problem. Socioeconomic variables play an important, if 

not determining, role. As a result, you will need to broaden your scope of 

partners beyond those who provide and study health care. Second, as you 

come together to form plans of attack on the New Morbidity, there will be 

countless disagreements in how your goals should be accomplished. The 

methods we used with Healthy People 2000 to address precisely these issues, 

could be invaluable in achieving consensus in State planning. 

In closing, I can only encourage you to make use of the strong points of 

Healthy People 2000. Reach out to all those groups and organizations that are 

often excluded from health planning and health solutions. Invite employers, 

school administrators and teachers, social workers, mayors, and recreation 

groups to play an active part. This is simple advice. I merely suggest that 

you avoid just talking to yourselves. 

9 
An exercise in future planning was undertaken by the Institute of 

Medicine (National Academy of Sciences) in the work, "Disability in America: 

Toward a National Agenda for Prevention." This project was described by 

Allen Crocker, Director of the Developmental Evaluation Center at the 

Children's Hospital in Boston. The Institute's book-length report lists 27 

Recommendations: 

ORGANIZATION AND COORDINATION 

1. Develop leadership of the National Disability Prevention Program at the 

CDC

2. Develop an enhanced role for the private sector 

3. Establish a national advisory committee 

4. Establish a Federal interagency council 

5. Critically assess progress periodically 

SURVEILLANCE 

6. Develop a conceptual framework and standard measures of disability 

7. Develop a national disability surveillance system 

8. Revise the National Health Interview Survey 

9. Conduct a comprehensive longitudinal survey of disability 

10. Develop disability indexes 

RESEARCH 

11. Develop a comprehensive research program 

12. Emphasize longitudinal research 

13. Conduct research on socioeconomic and psychosocial disadvantage

10 
14. Expand research on preventive and therapeutic interventions 

15. Upgrade training for research on disability prevention 

ACCESS TO CARE AND PREVENTION SERVICES 

16. Provide comprehensive health services to all mothers and children 

17. Develop new health service delivery strategies for persons with 

disabilities 

18. Develop new health promotion models for persons with disabilities 

19. Foster local capacity building and demonstration projects 

20. Continue effective prevention programs 

21. Provide comprehensive vocational services 

22. Provide effective family planning and prenatal services 

PROFESSIONAL AND PUBLIC EDUCATION 

23. Upgrade medical education and training of physicians 

24. Upgrade the training of allied professionals 

25. Establish a program of grants for education and training 

26. Provide more public education on the prevention of disability 

27. Provide more training opportunities for family members and personal 

attendants of people with disabling conditions 

The working committee that produced these recommendations considered the 

issues of disability in a generic sense, including, developmental disabilities, 

11 
concerns surrounding injury (at all ages), chronic disease and aging, and 

secondary conditions. Dr. Crocker analyzed the applicability of the Agenda to 

persons involved specifically with mental retardation and developmental 

disorders, and concluded that the value was high. 

First of all, the report appropriately endorses the major contributions of 

the Centers for Disease Control, past, present, and continuing. Their 

capacity building programs in the States are a courageous and significant 

outreach to citizens and communities to become active in a systematic way. I 

believe they have been of seminal importance and will continue to be. So 

therefore, those of us with an identification with developmental disabilities 

have watched with considerable gratification as these activities have 

addressed concerns regarding developmental disabilities in those States. 

Secondly, there will be a long-overdue Federal Interagency Council. 

Thoughtful people have had much dismay regarding the incomplete capacity of 

Federal agencies to talk amongst themselves in a systematic and monitored 

way about their prevention plans. I remember when the PCMR attempted, 

about five years ago, to make a list of Federal offices that had something 

important to do in the prevention of developmental disabilities, and the list 

ran to 35 or 40 agencies. They have never been able to get together 

effectively. This is at long last a start. We will watch with great interest as 

these folks put their cards on the table. There would be a national advisory 

committee with strong consumer representation parallel to it and a voice that 

will be well heard, and this would also be a significant gain. And lastly, there 

is a requirement for monitoring and reporting the progress of the prevention 

activities on a national level which has never heretofore been suggested. It is 

my sincere hope that this will indeed be retained. 

The need for improvement in the knowledge base is obvious; 

particularly in the most sensitive areas of the measurement of risks, the nature of 

courses, and the effectiveness of interventions. 

It is gratifying that there has been in the next to last group of 

recommendations a proud public affirmation of the need for comprehensive 

services for mothers and children, for those at risk in general, and for the 

procurement of technology. The attention to quality of life considerations is 

welcome. These are all words that we use in our own meetings, and to have 

them presented here, in a form that can be widely circulated and become 

part of the national conviction, is of great value to me. 

12 
It is an important emphasis, in the IOM report, that there will be 

enhancement of related educational activities, particularly the training of 

families. It is good that there is endorsement of ongoing effective programs with 

no attempt to sidestep or minimize the quality of work already underway. 

And finally, I personally am very grateful that there has been throughout all 

this work, a much more thoughtful model of the disabling process and an 

insistence upon a humanistic vocabulary. 

In other words, if you ask whether or not the Institute of Medicine report 

provided for us in mental retardation and developmental disabilities a critically 

valuable tool, the answer is yes, and for the following reasons: we do believe in 

the CDC's importance; that national bodies should take some responsibility; that 

the knowledge base requires improvement; that comprehensive services are a 

cornerstone of a caring government; that educational activities are a necessary 

reinforcement of the whole business; and that it is appropriate that it be looked 

at from a consumer's point-of-view and with thoughtfulness in our vocabulary. 

Alfred Baumeister, Director of the Research Program on Retarded Intellectual 

Development, at the Kennedy Center for Research on Education and Human 

Development, Vanderbilt University, has in recent years provided a scholarly 

conception of the "New Morbidity." This speaks to the complex of interacting 

biomedical, environmental, and social factors that can lead to significant 

developmental compromise for young children, with special reference to 

increasingly prevalent contemporary psychosocial and health problems. Poverty and 

social disadvantage are critical catalytic variables. He describes the requirement in 

the future for enhanced commitment. 

Evidence is overwhelming that recent trends affecting the health of 

children are not conducive to development, including such diverse public 

health aspects as prenatal care, low birth weight, immunizations, infectious 

diseases, abuse and neglect, violent behavior, and accidents. Poverty is not 

good for children. These facts do not seem to drive contemporary policy. The 

question is, then what does? 

Politics, poverty, and disadvantage have extracted a terrible toll on 

our children. Problems associated with the new morbidity are complex, 

profound, and frequently irreversible in their effects on individuals, 

families, and society. The human and economic costs of allowing these 

influences to remain unresolved far outweigh the costs of investing time and 

13 
resources in research, treatment, and prevention. As society becomes more complex 

and pressured and as greater numbers of individuals and families find themselves 

facing economic, social, and environmental travail, more and more children will 

become the victims of psychosocial, developmental, and behavioral problems. The 

ever-progressing incidence of new morbidities will undoubtedly necessitate a 

strong national and local commitment to more preventive health care services, 

social services, and educational awareness programs. Terribly sensitive but 

diverse issues such as income distribution, screening for diseases, improved 

housing, health insurance, and quality day care will have to be addressed 

fearlessly and equitably. 

While there are some localities in the United States which facilitate routine 

preventive care, the fact is that we do not have a comprehensive, integrated 

national health policy especially for children. This is all the more dismaying because 

we do possess the knowledge base with which to implement cost-effective public 

health and educational programs. But we do not have in place the effective 

integrated systems to ensure continuity of programs and accessibility to services. 

Rhetoric alone will not solve these problems. There is light at the end of the tunnel, 

but it remains dim. 

Solutions to the myriad problems that give rise to the new morbidity do not 

come easily. Indeed, the Gordian Knot of social, economic, medical, and 

psychological factors that produce children at risk has turned the talents of many of 

the very people who might disentangle it toward other more immediately solvable 

problems. In many instances, programs have been instituted that, like the babies 

they were intended to serve, failed to thrive. 

As a nation we may be lured into the pretense that the poor, disadvantaged, 

and disenfranchised are condemned to an intergenerational cycle of despair and 

deprivation; that they are somehow committed to a fate of their own, one 

disconnected from ours. Should we let poor children suffer and die because they 

are a draining surplus on our society? That conclusion may make for good 

arithmetic, but terrible morality. Our contemporary, perfunctory, and dispirited 

treatment of many poor children does not enlighten our consciousness nor ampler 

their cries of anguish and despair. To ignore these families as the inevitable 

consequence of human variability, is an illusion that is morally and socially 

harmful and wrong. This is an injustice that cannot be contained within the 

walls of conventional social practice. To adopt philosophies and policies that 

14 
separate them from us is an injustice that reflects on our values and social order. 

We race toward a moral crossroad, because if the children do not have us, 

what hope have they? 

I'll conclude with a quote from Hubert Humphrey: "The measure of a 

Nation is how it treats people in the twilight of life, people in the dawn of life, 

and people in the shadows of life." 

Edward Zigler, Sterling Professor of Psychology at Yale University, 

captures the excitement in the projects to bring dedicated special supports and 

training to disadvantaged young children and their families, with the goal of 

preventing the occurrence of mental retardation. He traces the improved 

outcomes achieved in the Milwaukee project, Abecedarian project, High/Scope 

project, the Yale Child Welfare Research Program, the Houston Parent-Child 

Development Center, the Child and Family Resource Program and the Parents 

as Teachers program in Missouri. It appears clear that systematic work of this 

sort will be essential to achieve future goals. 

Therefore it seems very clear that the most effective strategies to 

prevent low-level functioning among poor children are through family 

support. Since not all families face the same difficulties, they will not need the 

same types of support. Some may need little more than child care services 

so they can maintain a decent standard of living. Others may need to be taught 

baby care and practical information about how children grow and learn. Some 

will need homes, jobs, and medical services. It is likely that many families will 

need some combination of supports rather than one, such as preschool for their 

children. And some will require services only until they can get on their feet, 

while others will need continuous assistance in one form or another over time. 

A national effort to serve young, at-risk children and to ease the 

problems of their families comes from the amendments to the Education of 

the Handicapped Act Amendments of 1986, Public Law 99-457. The law is 

being phased in to provide coordinated services to handicapped or at-risk 

infants and preschoolers. As proof that science does influence social policy 

in a meaningful way, the amendments embody much of what has been 

learned from our years of research on early intervention. First, by extending 

the mandate of appropriate educational services for school-age children to 

cover the years before school, there is respect for that change as the 

child grows, and changes will certainly be more effective than efforts to 

15 
treat the child at one point in time. The services provided are not limited to 

education, but also cover health and social needs, a broad intervention that 

holds promise of enhancing social competence in children who may be weak in 

one or more of these areas. 

Like the original act, the amendments also recognize that parents have 

a profound influence on their children and must be an integral part of the 

intervention process. Thus, parents are part of a multidisciplinary team that 

plans and evaluates each child's program. The 1986 amendments also recognize 

that strong families are in the best position to strengthen their children's 

course of development. The law requires that each handicapped infant or 

toddler receive an Individualized Family Service Plan in which a case 

manager is assigned to each family to assess their needs and help them access 

whatever services they may require. When fully implemented, this law should 

do much to improve the adaptation of families with handicapped children, and to 

assure the early identification and long-term treatment of children who are 

retarded or have significant risk of functioning at a low level. 

The types of intervention services I have talked about show that we now 

have some knowledge and are gaining the commitment to alleviate the problems 

associated with mild mental retardation. Of course, it would be more exciting 

to point to new methods that can cure retardation, but our knowledge base 

does not support expectations that changes in societal practices will lead to 

drastic changes in intelligence. We have also learned that we need not penalize 

people for being poor by raising their children for them, by abandoning them 

with the assumption of their probable inherent inferiority, or by recommending 

an identical regimen to improve their children's collective intelligence. But 

we do have reason to believe that several kinds of intervention can raise 

functional levels of intelligence for persons whose measured IQ is commonly 

low. There is further evidence that a thoughtful coordination of these various 

interventions could help many children and their families to adapt better to 

society and to achieve a better quality of daily existence. In my opinion, this is a 

worthwhile and achievable goal of early intervention efforts. 

Additional attention to prevention through intervention is considered by 

Judy Howard, Professor of Clinical Pediatrics at the University of California at 

Los Angeles, with particular reference to the circumstances of infants in 

"chemically dependent families." She speaks to the behavioral and 

developmental aberrations frequent in children who have been prenatally 

16 
exposed to illicit drugs and/or alcohol. The "continuum of reproductive casualty" 

ranges from spontaneous abortion and fetal death to prematurity, intrauterine growth 

retardation, mental retardation, learning problems, and normalcy. Improved systems 

will be needed to achieve effective coordinated treatment services. 

Many systems are already in place to serve disadvantaged and/or 

biologically at-risk infants and children. For instance, children living under 

impoverished circumstances can receive health care funded through 

Medicare, and supplemental food can be provided through WIC programs. 

Infants and young children who are at risk or have developmental 

disabilities are eligible to receive services through developmental disabilities 

programs such as Regional Centers in California. Through Public Laws 

94-142 and 99-457, (Education for all Handicapped Children Act of 1975 

and the Education of the Handicapped Act Amendments of 1986), special 

education programs are and will be available to serve this special-needs 

population of children from birth, as well as their families. These programs 

also will provide services for infants who have been exposed prenatally to 

drugs. However, in order to appropriately serve this particular group of 

children and their families, some existing programs must be modified, and 

additional services must be considered. 

Substance-abusing families bring unique challenges to our current 

service delivery system, where the primary caretaker (usually the parent) is 

responsible for bringing the child to health care and educational services. 

In order for a parent to ensure that the child is in the best of health and has 

educational opportunities, that parent must be able to locate and secure 

appropriate services. Based upon our knowledge about chemically 

dependent parents (i.e., altered mental status, the nature of addiction, the 

illegal activities revolving around drug use, etc.), health care providers, 

educators, and other involved professionals must be informed about the 

disorder of chemical dependency and its impact upon the daily life of the 

substance abuser. We cannot assume that chemically dependent parents 

will be able to advocate effectively for their children, work as team members 

in providing for their children's health and educational needs, and follow 

through with professional recommendations on a consistent basis. 

If we want these "special-needs parents" to participate in the models 

we have developed, we will need to ensure that the parents themselves 

receive treatment for their addiction as well as parenting education and 

17 
mental health services. Furthermore, in cases where children have been 

temporarily removed from their biologic parents' custody by court order and 

are under the care of extended family members or foster parents, or are in 

congregate care homes, we also will need to provide information to these 

temporary caregivers to help them obtain appropriate health and 

educational services for the children. We will need to identify the needs 

specific to these various caregivers (including grandparents, aunts, and 

foster families) and provide supportive services to them, to insure that they are 

able to participate fully in the children's individualized health and education 

plans. 

Providing these services will require the cooperation of professionals who 

traditionally have not been involved in meeting the health and educational 

needs of developmentally disabled children. Drug and alcohol treatment 

counselors, child protective services workers, law enforcement professionals, 

and members of the judicial system will need to join forces with medical and 

educational professionals so that chemically dependant families will receive 

coordinated treatment services for promoting a family unit that is healthy both 

physically and emotionally. 

Herbert Cohen, Director of the Rose F. Kennedy University Affiliated 

Program at the Albert Einstein College of Medicine, addressed professional 

preparation and training to meet the needs of mothers and children with HIV 

infection. Children with congenital HIV infection are clearly in a multifaceted 

dilemma. The frequent expression of virus-induced encephalopathy is a major 

concern, but difficulties in the environmental factors (including maternal illness) 

are a concurrent liability. Support services for these children will reduce the 

developmental morbidity. Thoughtful training is needed for persons working in 

child development, child welfare, education, health care, and public planning, 

now and as the numbers of affected families and infants rise in the future. 

Children with HIV infection not only may have neurodevelopmental 

disorders, but they may also have immunological, physical, sensory, social, 

behavioral, and educational impairments or difficulties. Therefore, care for 

these children may require extensive diagnostic and treatment services from 

many medical and allied health specialists, as well as from special 

educators and child care personnel. 

The complex nature of the child's and family's problems necessitates the 

development of a comprehensive service plan for the child and family. 

18 
The determination of the needs of the child and family or caretakers 

may vary considerably from child to child as well as with the time in the life of 

the child with a HIV infection that he or she is either first diagnosed as having 

a HIV infection or is brought to the attention of service providers. 

Training needs include not only a familiarity with the previously 

presented information to convey an understanding of the causes, 

epidemiology, and course of the disease and its neurodevelopmental 

consequences, but also knowledge about the mechanisms for transmission of 

HIV infection, the forms of treatment, how to deal with the families and 

other caretakers, rights and entitlement of those infected, protection of 

confidentiality and who has the right to know, antidiscrimination measures and 

legal protection mechanisms, the complex moral and ethical issues associated 

with information sharing, rights to privacy, and the rights of care providers 

to know who is infected, what are the new treatment approaches, and the 

current data on prognosis. 

Therefore, those who provide services for the child with a HIV infection 

and their family or caretakers must have an understanding of the disease, its 

cause, its social consequences, the devastation that it may cause, and its 

varied impact at different stages in the course of the disease. 

As we learn more about HIV infection, we learn more about ourselves. 

For those that are in doubt about their capacity personally to care for persons 

who are HIV infected, it may be useful to remember the wisdom from a fortune 

cookie that stated "doubt is the beginning, not the end of wisdom." 

Travis Thompson, now the Director of the John F. Kennedy Center for 

Research on Education and Human Development, goes further in the discussion 

of the vulnerability of children in poverty. He speaks of undernutrition, 

inadequate prenatal care, exposure to infections pre- and postnatally, inadequate 

educational opportunities, and teenage pregnancy, as disproportionately 

occurring to children born and raised in poverty. "This past century's 

experiences have changed us from the nation of naive optimists we once were." 

The time has come, he states, to set a new course for the future of our 

children. 

Tackling problems associated with poverty is not a challenge for 

the faint of heart. The time is overdue that we stop shrinking from our 

19 
responsibilities. Governmental agencies, businesses, and universities cannot solve 

these problems single-handedly, nor can any of these institutions be absolved of 

responsibility from joining the struggle. The 1990's will be the decade of combined 

efforts to solve societal problems that no single field of endeavor can reasonably 

expect to unravel alone. The results of yesterday's basic science will be today's 

applied research and become tomorrow's practice. It will be a time to turn difficult 

challenges into opportunities. It will be a time in which we will re-learn to take 

chances tackling problems that are truly important. 

Authentic solutions are no longer rejected out of hand, but few political 

leaders are willing to take the chance of leading. Television and campaign financing 

have indelibly changed the meaning of leadership in America. One must look to 

leaders of an earlier time to find guidance. President John F. Kennedy's 1961 

inaugural address called upon Americans to correct social inequalities, provide 

adequate health care and education for all Americans, and take dramatic new strides 

in technology. He said, "All this will not be finished in the first one hundred days. 

Nor will it be finished in the first one thousand days, nor in the life of this 

Administration, nor even perhaps in our lifetime on this planet. But let us begin." It is 

time to begin...again. It is time to resume seriously working toward those noble goals, 

and to behave more responsibly as a people. It is time to capitalize on scientific 

knowledge so laboriously acquired over the past three decades and to strike out in 

search of new solutions where critical information is lacking. It is time to permit 

corrective feedback to work, to allow ourselves to be the kind of people we can 

and ought to be, for the sake of our children. 

20 
THE BREADTH OF FEDERAL INVOLVEMENT 

The President's Committee on Mental Retardation created a landmark 

occasion in the February 1991 Summit Conference. An array of Federal, State and 

community agencies joined in support of a national event with a prevention theme. This 

offered a unique demonstration of the sweep of central governmental investment 

(Health and Human Services, Education) in the provision and sponsorship of 

prevention activities. Synchrony and common purpose were evident, and often 

collaboration as well. Resolves from the National Institute of Child Health and 

Human Development, Centers for Disease Control and Prevention, and the 

Office of Disease Prevention and Health Promotion are included in the Section 

on THE FUTURE. It is now relevant to review materials from the presentations of the 

other agencies. They provide a cogent perspective from that time (1991) of 

programmatic concerns regarding primary and secondary disability. 

1. BROAD INTERESTS AND ACTIONS 

Louis W. Sullivan, M.D., speaking as Secretary of Health and Human Services,

listed four particular emphases in his Department that bear on improved options for 

mothers and children. 

First, research. The President has proclaimed the 1990s as the 

"Decade of the Brain." We are expanding our commitment to research on the 

mind and the brain. Our research programs are wide-ranging. They include 

work at the molecular level, intervention programs targeted at high-risk infants, 

and the use of computer assisted devices to help those with mental retardation 

learn to read. 

A second way to improve options and prevent the new morbidity is with 

immunization. As you know, we recently licensed the first vaccine effective in 

infants against meningitis associated with Hemophilus influenza type B, a 

leading cause of acquired mental retardation in the United States. 

There is a third way to increase options for mothers and children. We 

can prevent mental retardation in a vast number of cases if we can reach 

pregnant mothers and infants with medical care, nutrition, and the 

21 
personal counseling that they desperately need in prenatal and neonatal stages. 

Let me say a word about improving access to programs. We are helping 

the States to adopt one-stop shopping initiatives that will make available, under 

one roof, the various health and social services that are targeted to pregnant 

mothers and infants. And, we have expanded Medicaid eligibility for pregnant 

women and infants to 133 percent of the poverty line. In addition, the 

President's proposed budget for next year projects that Medicaid outlays 

alone will be $3.8 billion for 2.4 million women and infants, an increase of 

$300 million over the previous fiscal year. 

You and I know that research, immunization, and access to care are 

vital. But so is a sense of personal responsibility for good health, the fourth 

way to improve options and prevent illness. We are calling for a new 

"culture of character" that nurtures values such as self-discipline and mutual 

concern for the health and well-being of our friends, families, and neighbors. 

Deborah McFadden, former Commissioner of the Administration on 

Developmental Disabilities (ADD), gave examples of the substantial interest of the 

ADD in many aspects of prevention work. 

Programs funded by the Administration on Developmental Disabilities 

have, of course, been involved in prevention activities for many years. Our 

Florida Developmental Disabilities Council is receiving an award at this 

conference for its work in this area. In Iowa, our Governor's Planning 

Council for Developmental Disabilities was instrumental in developing and 

advocating for the passage of a Senate Joint Resolution regarding the 

prevention of disabilities. Our University Affiliated Programs have been for 

twenty years in the forefront of training and research involving the 

prevention of disabilities. In a broader context, most of our advocacy efforts 

have been directed to ensuring that people with developmental disabilities are 

not given further disabilities through program models that promote dependence, 

idleness, isolation, and segregation. Rather, our goals for the entire program 

have become independence, productivity, and integration. 

22 
2. THE WORLD OF CHILDREN 

Vince L. Hutchins, Acting Director of the Maternal and Child Health 

Bureau, U.S. Department of Health and Human Services, reflected on the longstanding 

effort in this field, in which Title V of the Social Security Act has been a central 

element. 

In this century, numerous efforts at all levels of government have 

succeeded in improving maternal and child health. Advocates for children, 

including professional workers in the field, parents, private citizens, 

legislators, professional organizations, women's groups, and voluntary 

agencies, have been components of the constituency that has stimulated and 

monitored these efforts over the years. 

He further noted the salutary features of current Maternal and Child Health Block 

Grant applications, which include: 

 Statewide needs assessments. 

 Planning for meeting identified needs. 

 Assurance of at least 30 percent assignment for preventive and primary 

care services. 

 Assurance of at least 30 percent for Children with Special Health Needs 

services. 

 Assurance that the Fiscal Year 1989 level of State effort will be 

maintained. 

 Provision for Title V agency participation in interagency coordination 

with related programs. 

 Provision for identification of, and application assistance for, Medicaideligible pregnant women and infants. 

Wade F. Horn, former Commissioner, Administration for Children, 

Youth, and Families (ACYF), U.S. Department of Health and Human Services, 

spoke of the strong and diverse contributions of that agency. 

HEAD START, now concluding its 25th year, is a comprehensive child 

development program currently serving 550,000 low-income preschool children 

and their families in 2,000 communities across the country. A minimum of 10 

percent of the enrollment opportunities in each State must be made available to 

children with disabilities, including mental retardation. 

23 
Head Start has surpassed this requirement in each of the last 17 years; currently, 13 

percent of the enrollment is comprised of children with disabilities. 

Head Start's four program components emphasize cognitive and language 

development, socio-emotional development, physical and mental health, nutrition, 

social services and parent involvement. Together, these components play an 

important part in the prevention and amelioration of mental retardation and other 

developmental delays for Head Start children. 

Among programs administered by the CHILDREN'S BUREAU that affect 

children with mental retardation, their families, and other caregivers are projects 

that offer respite care for families who adopt children with special needs, respite 

care and temporary crisis nurseries for children with disabilities, and specialized 

family foster care for older children with mental, emotional, or physical 

disabilities. 

Under the Abandoned Infants Assistance Act of 1988, Public Law 100-505, 

the Children's Bureau has funded 24 demonstration projects to prevent the 

abandonment of infants born to mothers with Human Immunodeficiency Virus 

infection, Acquired Immune Deficiency Syndrome and other medical problems. In 

addition to addressing the special needs of the babies who are at high risk of 

developmental delay and other troubled outcomes, the projects are developing ways 

to identify mothers at risk of abandoning their children and to provide services to 

help them bond with their infants and prepare to care for them at home. The 

projects are also preparing infants who cannot reside with their natural families 

for placement in family foster homes, and recruiting and training care-givers. 

Several programs supported over the last five years by the NATIONAL 

CENTER ON CHILD ABUSE AND NEGLECT (NCCAN) to prevent child 

maltreatment also are particularly relevant to the prevention or amelioration of 

mental retardation. Between 1986 and 1989, NCCAN-funded projects were 

designed to reduce the risk of developmental delay among infants of chemically 

dependent mothers and to improve the childrearing skills of teen parents. More 

recently, the NCCAN awarded grants for model comprehensive community-based 

prevention programs that include prenatal health care, parenting education and 

support programs for new parents, and support programs such as respite care and 

crisis nurseries for parents under stress. The NCCAN also funds a clearinghouse to 

assist agencies that work with another high-risk group of children--disabled 

24 
infants with life-threatening conditions. The National Information 

Clearinghouse on Disabled Infants with Life-Threatening Conditions 

disseminates information on treatment procedures, and services and resources 

available to infants and their families, including social and parent support 

services. 

Among the research studies supported by the NCCAN are two that have 

examined possible links between child maltreatment and mental retardation. 

Researchers at Cornell University and the University of Georgia suggest 

that child maltreatment may adversely affect the life chances of any child, 

particularly children with mental retardation who are at risk for academic 

failure and social/emotional dysfunction. Prevention programs targeted to 

child maltreatment may be of help in reducing such risk. 

Finally, the ACYF recognizes that coordination with other agencies 

concerned with the prevention and amelioration of disabilities is essential for 

successful intervention. Accordingly, the ACYF is a member of the Federal 

Interagency Coordinating Council (FICC), the Federal-level counterpart of 

the State Interagency Coordinating Councils required under the Individuals 

with Disabilities Education Act (IDEA). A subcommittee of the FICC is 

currently developing an interagency agreement between the Department of 

Health and Human Services and the Department of Education, involving the 

ACYF, the Administration for Developmental Disabilities, the Maternal and 

Child Health Bureau, the Social Security Administration, the National 

Institute of Mental Health, the Centers for Disease Control and Prevention, 

and the Office of Special Education Programs. Under this agreement, the 

agencies will work together to identify infants and children with disabilities 

who are in need of services, and will jointly coordinate and provide services 

and referrals for children and families. 

Supports for children and families in the circumstance of at risk or 

disability is part of the province of the Social Security Administration (SSA), as 

discussed by Gwendolyn S. King, the former Commissioner. "The SSA can 

work in concert with other efforts to try to minimize the socio-economic factors 

that often tragically prevent a child from getting a happy and healthy start in 

life." 

Currently, through our Supplemental Security Income (SSI) program, the 

Social Security Administration provides monthly cash assistance totaling 

25 
about $121 million to some 312,000 children with disabilities and their families 

who have limited income and resources. Of these children, more than 111,000 

have mental retardation. 

While dollars cannot make a child's disability go away and while SSI will 

not entirely eliminate financial difficulties, monthly benefits from this program 

can make a difference by providing basic necessities for a child with 

disabilities and his or her family. Eligibility in the program also may open the 

door for Medicaid eligibility and other State and Federal services. 

For those enrolled and receiving benefits, the SSI program has 

helped. But I must say candidly that SSI is not yet an unqualified success. Not 

when there are still people in cities, town, and communities across this nation 

who need its help and are entitled to it, but are not receiving it. Not when there 

are children whose lives could be set on a different course if they were 

receiving these benefits. 

3. CREATIVE EDUCATION 

Michael E. Vader, former Deputy Assistant Secretary for the Office of 

Special Education and Rehabilitation Services (OSERS), U.S. Department of 

Education, reported on the extraordinary new developments in education, which 

have major prevention implications. 

Part H of the Education of the Handicapped Act Amendments of 1986, 

(P.L. 99-457) is a formula grant program of assistance to States to help them 

develop a comprehensive, interagency program of early intervention for 

infants, toddlers, and their families. Not only are children from birth through 

two years of age eligible for services under Part H, but in addition, States may 

elect to serve infants and toddlers who are at risk for delay if early 

intervention services are not provided. 

One of the most significant features of the Part H Program is its 

emphasis on the family. Both children and families must be assessed to 

determine their strengths and needs, and early intervention services must be 

documented in an individualized family service plan. Early intervention 

services may include case management services, family training services, 

health and medical services, and others. We're very excited about the future 

of programs that provide early intervention services for infants and toddlers. 

26 
In our work at the OSERS, we have established a mission to ensure that 

all individuals with disabilities realize their optimal potential, productivity, 

and participation in our society. Young children have so much potential. They 

are at the beginning of their lives. By making sure that young children with 

disabilities and their families receive the support and intervention that is 

needed, we have the best chance of helping them to reach their full potential. 

Even from the time of early childhood, our goals must be focused on outcomes 

and the long-term productivity of children and families. We can do this only if 

there is a long-standing commitment between parents and professionals to 

work together in partnership to provide the necessary services. 

This need for full participation in the planning process is also true at the 

Federal level. Our efforts to expand programming for infants means that we 

will be dealing with many new issues. I think it is vitally important to the 

future of people with disabilities that we cultivate hope and confidence. It is 

only when we possess these attitudes that we can embrace and master change. 

If we respond positively, we will continue to develop the innovations required 

to ensure equal opportunity for persons with disabilities. 

The scope of special education is broadening, and now includes important 

supports for children with special needs to allow their best progress, as recounted 

by Judy Schrag, former Director of the Office of Special Education Programs in the 

Department of Education. 

There are other changing populations on which we are focusing our 

programs in the Office of Special Education to support efforts within the 

States. For example, we know that the schools are faced with increased 

numbers of severely handicapped, medically-fragile children who might have 

died a few years ago but are being saved and entering our classrooms as a 

result of wonderful medical technology. Another aspect of the changing 

special education population is that new medications are being used for 

cancer, epilepsy, and emotional problems, including some that are appearing to 

permanently affect learning skills. Increased numbers of scoliosis students are 

now returning to school without extended home and extended hospital stays. 

Other aspects of the changing population include children with 

cystic fibrosis, muscular dystrophy, and hearing defects who are living 

longer than in previous years and are, therefore, entering our schools. In 

27 
addition, there are increased numbers of babies with HIV infection, as well as 

greater ethnic diversity. Congress has recognized younger and more impacted 

students with emotional disturbance and mental health needs with a new 

discretionary program in the Individuals with Disabilities Education Act 

(IDEA), Public Law 99-457, which is the re-authorization of the Education of 

the Handicapped Act. We have other changes in our special education 

population. Certainly, this increased diversity demands a whole-child, 

coordinated service delivery approach. There are many exciting new linkages 

being formed across special education, social services, and health services 

within the States. Today only allows highlighting some of those. The CASP 

projects and Robert Wood Johnson-supported projects for children and 

families with mental health concerns are some examples. 

4. CONTINUING INTERVENTION FOR PERSONS WITH DISABILITY 

A modern component of the prevention spectrum relates to actions that 

conserve the strengths and functional potential of persons with disability, 

modulating the impairment and reinforcing the quality of life. William Graves, 

Director of the National Institute on Disability and Rehabilitation Research 

(NIDRR), U.S. Department of Education indicated that agency's commitment in 

this area. 

About $3.6 million has been programmed for disability and 

rehabilitation research in the area of mental retardation. What kinds of 

projects are supported? A Rehabilitation Research Training Center (RRTC) is 

funded at the University of Minnesota to improve community integration for 

persons with mental retardation. There is a second RRTC funded at Syracuse 

University to identify and focus its efforts on actual practices for operating 

community residences for children and adults with mental retardation. There is 

an RRTC at the Cincinnati Center for Developmental Disorders to provide 

expertise in helping older people with mental retardation integrate into 

community life. There is an RRTC at Virginia Commonwealth University 

designed to improve employment outcomes for individuals with mental 

retardation by using the supported employment model. These four activities 

are examples of the kinds of work being carried on by NIDRR grantees that 

promote the integration and inclusion of individuals with mental retardation 

into the community. Funding also occurs in the Field-Initiated Research, 

Innovation Grant, and Small Business Innovative Research Program. 

28 
It is within the Independent Living Centers that some of the most 

substantial efforts are occurring regarding the prevention of secondary 

conditions--the phenomena that have so often intruded on the personal status and 

quality of life experienced by people with disability. The self-help training and 

supported efforts provided by these centers are of seminal importance in 

minimizing the occurrence of secondary conditions. Nell Carney, former 

Commissioner of the Rehabilitation Services Administration (RSA), U.S. 

Department of Education, spoke of RSA's commitment to assist here. 

Title VII of the Rehabilitation Act authorizes RSA to provide 

independent living services in three categories: Part A, grants to State 

vocational rehabilitation (VR) agencies; Part B, funding for centers for 

independent living; and Part C, independent living programs for the older, 

blind population. Overall, approximately $67 million annually goes to 

support the independent living programs. The thrust of these programs is to 

improve the quality of life for millions of Americans with disabilities through 

such services as peer counseling, community integration, assistive technology, 

and many other services designed specifically to elevate or maintain the level 

of independence of the individual. 

The particular situation of elderly persons, with or at risk for disability, is 

receiving fresh consideration. Joyce Berry, former Commissioner of the 

Administration on Aging (AoA), U.S. Department of Health and Human Services, 

presented ideas regarding collaborative efforts on behalf of senior citizens who 

have special needs or are at risk for disability. 

The Older Americans Act programs offer a wealth of opportunity in 

terms of making sure that adults with mental retardation and their 

caregivers remain in the community, which is where they want to be. Less 

than five percent of older people are, in fact, in institutions. Older people 

want to stay in the community and seniors with mental retardation are no 

different in this respect. Their caregivers, however, need support to keep 

their children with mental retardation outside of institutions. Older adults 

with mental retardation need a whole range of services. You all know what 

they are. They need adult day care. They need homemaker services, home 

health aides, home-delivered meals, transportation services and so on. 

Commissioner McFadden and I have just recently funded four 

projects to strengthen assistance to persons with disabilities. We have 

29 
projects in New York, Virginia, Wisconsin, and Mississippi where we are trying to 

forge linkage between the aging network and the networks servicing persons with 

developmental disabilities in order to enhance supportive services. 

The AoA has decided to place great emphasis on that smaller but sizeable 

group of older people who are at-risk, and this includes the target group that we are 

concerned about today. Essentially what we are trying to do through the National 

Eldercare Campaign is to heighten public awareness of the needs of older persons 

at-risk and programs available to help them. 

Commissioner King, for example, has expressed her concern about the many 

seniors who still do not know about Social Security Income (SSI), and we have been 

trying to work together on improving outreach to enroll seniors. 

30 
ACTION IN STATE PROGRAMS 

For the 1991 Summit, the President's Committee on Mental Retardation invited 

four States--Florida, Iowa, New Jersey, and California--to make brief presentations 

of exemplary work going on in their programs. Three of these had received 

capacity-building grants from the Centers for Disease Control and Prevention, but all 

previously had strong commitments in this area. To date the implementation of 

prevention activities has commonly had a base in State agencies, and the ones 

presented here are among the best. Described in the projects are efforts in creating 

improved pregnancy outcome, avoidance of adolescent pregnancy, prevention of 

lead poisoning, building public awareness, and delivering genetic services. 

FLORIDA 

George Schmidt, Program Manager of Florida's Interagency Office of Disability 

Prevention, reported on the State's Outreach Childbirth Education Project. This effort 

was designed to reach medically indigent families in the Florida Adult and Community 

Education Centers, with a potential cohort of 6 0 , 0 0 0 expectant parents. The 

anticipated outcomes of the instruction are: 

* improved prenatal care 

* reduction in the incidence of low birthweight 

* reduction in the number of unwanted second pregnancies 

* improved literacy skills to enhance job opportunities 

* improved ability to access systems of support and health care. 

These affirmative plans were predicated on the agency's resolve that "Florida's future 

is her children..." 

The Florida Department of Education (ED), formed a partnership with 

the Florida Department of Health and Rehabilitative Services (DHRS), the 

March of Dimes Birth Defects Foundation (MOD), the Coalition of Florida 

Childbirth Educators (CFCE), and the Florida Healthy Mothers/Healthy 

Babies (HM/HB) Coalition to achieve the following program objectives: 

31 
1. Production of curricula for training of outreach childbirth 

educators and for teaching prenatal and childbirth classes for 

families with low literacy skills. These curricula are designed to 

meet the learning needs of poor readers, to broker adult and 

community education programs, and to encourage reading in the 

home. 

2. Establishment of a mechanism to provide childbirth classes 

to all low income families in Florida. Attracting low-income, 

low-literacy, expectant parents to childbirth classes is a highly 

effective outreach tool for other literacy and adult education 

programs. Outreach classes were begun at 33 new sites in 

1989. A recent survey of County Public Health Units (CPHUs) 

in Florida revealed that approximately 15,000 of their 

maternity clients are being served by the outreach project. 

3. Establishment of a mechanism for ongoing recruitment and 

training of outreach teachers. In 1989 alone, over 100 teachers 

were trained. Most completing the course are hospital and 

public health nurses who now teach in Adult and Community 

Education Centers throughout the State. 

4. Strengthening of the cooperative relationship between 

education and health organizations in Florida. At the State-level 

joint-funding between the DOE and the DHRS enabled the MOD, 

with support from the CFCE and HM/HB Coalition, to develop 

and implement the project at the local level. 

5. Development of a program model which can be disseminated to 

other States.

IOWA 

One of the many projects in Iowa's Office of Disability Prevention was 

described by Roger Chapman, Program Manager. This involved establishment 

of a planning Task Force, comprised of local professionals and consumers, in 

the economically-pressed rural community of Ottumwa, Iowa. While the work 

32 
of the task force was sponsored by the Office of Disability Prevention, the 

interventions were planned to become a self-sustaining part of the community 

infrastructure. 

When asked what could be done locally, the task force chose to focus 

upon the prevention of adolescent and unwanted pregnancies. Specifically, 

the committee suggested educational programs in the public school system. 

The local high school had long resisted any effort to include educational 

material focused on human sexuality in regular classes. However, this 

dramatically changed after a workshop was presented by the project that 

documented the local problem. A high school counselor attending this 

conference approached the project coordinator with a proposal for a class. 

After conferring with the project coordinator, the counselor 

approached the school superintendent with this idea. She received an 

enthusiastic endorsement. The coordinator then met with the high school 

counselors to work out logistical details. At this point considerable 

resistance was encountered. However, by then the question was who would do 

it and when, not if it would be done. The end result was a five-class 

curriculum entitled "Postponing Sexual Involvement" taught to all Ottumwa 

ninth graders in English class. 

Next the school nurse on the task force approached the Alternative 

School Principal with the same idea. The Alternative School conducts 

classes for students who drop out of regular high school. The idea was also 

enthusiastically received. The result was two classes a week taught at the 

Ottumwa Alternative High School focused upon relationships and parenting. 

The Pediatrician on the task force suggested another way to approach 

low birth weight prevention was to implement smoking cessation and teen 

prenatal classes. Both classes are currently being taught by the project. 

The point of all this is to illustrate that local people who are 

committed to a prevention program are in the best position to make it work. By 

listening to local people and incorporating appropriate suggestions, the way is 

cleared for invested people to use existing linkages to meet program objectives. 

33 
Establishing local coalitions was an essential component in making the 

project work. Prior to the implementation of the project, active involvement 

was sought from the local medical society. Several discussions were held with 

local physicians to discuss the project and solicit their input. The project was 

presented as complementing, not competing with, existing services. All too 

often new health-related programs require local health care providers to 

contribute time or other scarce resources. This project made no such 

request. In fact, analysis of project data would serve to enhance existing 

health services to area families. 

Community awareness of the project was another essential component of 

moving from planning to implementation. At the beginning of the project, 

several local events were conducted to introduce the project to the community. 

An "open house" was attended by several area professionals. The resource 

library was of particular interest. A "media meeting” was planned and 

conducted. Local media representatives (radio, television, newspaper) were 

invited to hear a panel of task force members talk about teen pregnancy in 

southern Iowa and project objectives. The data that was presented was supplied 

by field staff from the Office of Disability Prevention. The outcome of this was 

several newspaper feature articles and radio talk show appearances. The 

information presented was well-received because it involved local people 

discussing local problems. 

Community awareness should be an ongoing process. In recognition of 

this, task force co-chairs have done a number of educational presentations 

to community groups discussing teenage pregnancy and project objectives. 

Apart from the obvious benefit of community awareness, such presentations 

continue to strengthen investment and ownership in the project by the 

presenters. 

Public service announcements continue to publicize project activity. These 

include use of radio, television, and newspapers; posters in laundromats and 

on buses; project information stuffed in power bills; and printed on grocery 

sacks. 

NEW JERSEY 

Deborah Cohen, Director of New Jersey's Office for Prevention of 

Mental Retardation and Developmental Disabilities, provided an analysis of the 

factors that may influence variations in the speed and effectiveness by which 

34 
prevention plans move on to implementation. Ideally, she states, the following 

elements should be present: 

* unchallenged, recognizable leadership 

* consensus about the social good 

* mobilization of good karma in gear 

* making magic without money 

* suppression of ego for glory sharing. 

She then illustrated these features in action regarding the establishment of an 

effective program for prevention of lead poisoning. 

The setting for leadership was assured by the presence of a Governor's 

Council on the Prevention of Mental Retardation and Developmental 

Disabilities. The Council an Interagency Lead Poisoning Prevention Task 

Force was organized with critically important membership from health, 

housing, environment, education, and social services; and with help from 

community advocates, universities, and professional groups. 

The social good consensus was soon secured: 

From its first meeting, the task force members explicitly put forth its 

philosophy: No person's life should be endangered or compromised due to 

lead poisoning. There was almost no discussion within the task force about the 

value of reaching resolution with respect to the lead problem. 

This consensus has resulted in several important organizational 

outcomes that have matured over time. First, it is now recognized that the 

whole is greater than its parts, meaning that no single agency could resolve the 

problem on its own. During the earliest meetings, members of the task force, 

most of whom are in middle management, expressed their sense of feeling 

overwhelmed by the magnitude of the problem. By providing a forum 

through which individual members could be recognized for their contribution 

to the whole, a sense of achievement replaced feelings of frustration. 

Second, it is now recognized that no single agency has a role greater 

than others in resolving the problem. The need for interdepartmental 

cooperation in defining achievable objectives encouraged understanding of the 

strengths and limits of each agency. Thus, while early discussions may 

35 
have involved finger-pointing and casting blame, such debates are now 

tempered by more realistic expectations of the capabilities and the political 

realities of each department. 

Finally, attempts to develop strategies that would move the issue of lead 

higher up on the political agenda were originally met with skepticism, as 

individual members were uncertain about the response of their 

Commissioners. The task force resolved this issue by drafting an Action Agenda 

that assigned responsibility to each agency, specified roles for each 

Commissioner, and recommended incremental approaches that each agency could 

implement. The Action Agenda was then endorsed by the Governor's Council and 

forwarded to the Commissioners for their review and approval. 

This approach removed responsibility from the individual members and 

made the Governor's Council and task force the accountable agents. It has also 

had the benefit of insuring that the leadership from each department was in 

consensus about the value of lead poisoning prevention as a social good. 

CALIFORNIA 

California has been involved in prevention planning for a long time. 

Raymond Peterson, Director of the San Diego Regional Center, presented a review 

of some recent work. He spoke particularly about the activities of the Association of 

Regional Center Agencies (ARCA), which has a key role. 

The ARCA's Prevention Committee, has three active subcommittees that 

address prevention activities in California. These subcommittees are: 1) 

Persons at Risk of Parenting a Child with a Developmental Disability 

(genetics); 2) Infants at Risk of Becoming Developmentally Disabled; and 3) 

Public Information and Public Awareness. The most important is Public 

Information/Public Awareness because, no matter how sophisticated we are from 

a scientific standpoint, we will have little impact on reducing the incidence of 

mental retardation or reducing mortality or morbidity, if the public or 

consumer is not informed and does not have access to what is known to assist 

in assuring a healthy and productive life. 

Public awareness activities include distribution of materials 

developed by the Committee about selected prevention topics to each of the 

21 regional centers, so that information can be disseminated to persons in 

36 
all of the 58 counties in California. Public media is used and is coordinated 

between the regional centers and the State Department of Developmental 

Services. The topics that are targeted for this year are: 

* Substance Abuse and Life Styles 

* Prevention of Childhood Injury 

* Near-Drowning 

* Pediatrics AIDS 

* Lead Poisoning 

A local project of interest is the program to provide genetic counseling, 

prenatal diagnosis, and other genetic services in the San Diego Regional Center. 

Acknowledging the potential barriers to effective use of such services by the 

large minority population that lives in San Diego, a special effort was made to 

reach these persons. 

This project demonstrated that individuals and families in Latino and 

Southeast Asian cultures are receptive to and will utilize genetic counseling 

information and services when such information and services are made 

accessible to them. Since the project terminated, we have maintained the two 

bilingual positions (Spanish and Vietnamese) to assure the services will continue 

to be accessible to these populations. We have also expanded prevention 

services to address the needs of Southeast Asian refugees in our community who 

are faced with cultural and language barriers that limit the use of community 

services. The model for the Southeast Asian Developmental Disabilities Project 

(SEADD) uses bilingual and bicultural case managers from the Vietnamese, 

Cambodian, Laotian, and Hmong communities, who have been trained to assist 

families to obtain services for high-risk infants, and genetic services. By 

targeting this population and providing outreach to families who have 

immigrated to the United States, we have assisted individuals to assimilate into 

the community, and to obtain services as a part of our efforts to prevent or 

ameliorate childhood disabling conditions. This has been a very successful 

and exciting project. 

37 
RECOMMENDATIONS 

Stimulated by the Statement of Occasion, the Keynote Address, and the five 

Panels of speakers, the Conference Work Groups reflected on possible routes to 

achievement of the expressed goals. These gatherings compiled a strong and 

relevant listing of recommendations focused on the theme of prevention of disability 

related to the "new morbidity." 

These recommendations, originally 31 in number, speak primarily to three 

vital tracks: (1) RESEARCH NEEDS, for improvement of the knowledge base about 

disability, (2) BASIC SUPPORTS FOR ALL FAMILIES, to assure egalitarian access 

for life needs, and (3) IMPROVED PLANNING FOR PREVENTION for 

thoughtful mobilization of resources. 

RECOMMENDATIONS 

1. Research Needs

Continue research efforts at the national, State, and local level into known and 

unknown etiologic factors in mental retardation and related disabilities. 

Encourage interdisciplinary efforts to outline and implement effective methods 

for identifying children "at risk." 

Establish a network of epidemiology developmental disability centers to develop 

methods useful for surveillance, keep "scorecards," engage in health services 

research, and provide training for persons interested in epidemiology. 

Institute a national database to track indicators of the adequacy of efforts to 

reduce the incidence and ameliorate the effects of disabilities, including the 

indicators for prenatal care, low birthweight, and immunization. 

38 
2. Basic Supports for All Families

Extend public education with families downward, beginning at birth and using 

the home visitor concept. 

Obtain funds for educational programs and services into the hands of people who 

need them, using a "children's allowance model." 

Professionalize the occupation of child care provision into a career ladder 

concept, starting at the vocational level and working through advancing levels 

of proficiency. 

Make child care an integral part of the public school system. 

Make mandatory the use of meaningful curricula for school-based education 

in preparation for parenthood, beginning at the late elementary level and 

continuing through high school. 

Improve the process by which people access services, particularly for 

minorities and disadvantaged populations, using "consumer-friendly" 

strategies that reduce the possibility that consumers will see the process itself 

as a barrier. 

Encourage and utilize family-centered approaches to service delivery, 

involving fathers, extended family members, and "significant others" in the 

process. 

Support communities in such areas as employment, housing, nutrition, safety, and 

environment. 

Make health care accessible to all, and establish universal health insurance. 

3. Improved Planning for Prevention

Invite and support strong involvement of parents on prevention coalitions. 

39 
Involve more people with disabilities in planning efforts, and invite their input 

regarding the direction in which prevention planning should be focused. 

Use peer mentoring to encourage the involvement of individuals who represent 

disadvantaged populations on prevention coalitions at the local, State, and national 

levels. 

Invite representatives of agencies that serve persons with substance abuse or 

related problems to serve on prevention coalitions. 

Establish alliances with Governors and Legislators at the State and national level 

who have demonstrated interest in disabilities, and make use of their influence 

and visibility to address the needs of children, mothers, and families. 

Make more effective use of the capability of the media to portray unmet needs 

and address solutions to these needs. 

Involve private industry in State planning efforts and focus on productivity. 

Prevention planners at the State level should determine what programs and 

services are needed and wanted, and outline a strategy for addressing the assessed 

needs, based on analysis of the particular circumstances that characterize the State. 

Identify and address attitudinal barriers to the comprehensive planning and 

delivery of services. 

Encourage and support the establishment of more Federal, State, and local 

interagency alliances around topical issues. 

Establish a national advisory committee, heavily consumer driven, and a Federal 

interagency council, as recommended in the Institute of Medicine publication, 

Disability in America.

40 
Encourage the establishment and maintenance of an Office of Prevention in each State 

that is independent, rather than a part of the institutionalized bureaucracy within the State. 

41 
OBSERVATIONS AND COMMENTS ON ADEQUACY OF THE 

NATIONAL EFFORT TO REDUCE THE INCIDENCE AND 

AMELIORATE THE EFFECTS OF MENTAL RETARDATION AND 

RELATED DEVELOPMENTAL DISABILITIES 

The 25th Anniversary Summit Conference of the President's Committee 

on Mental Retardation in February, 1991, provided a comprehensive profile of 

the current status of the national effort for prevention of developmental 

disabilities. The substantial nature of the presentations confirmed that the 

Prevention Movement is alive and well. This movement began over 20 years 

ago, heavily motivated by consumer outreach and implemented by parent 

organizations and State coalitions. In the early days many other Federal 

entities, such as the Maternal and Child Health Bureau of the Health Resources 

and Services Administration and the CDC, made important contributions in 

prevention and the PCMR has provided national leadership and inspiration from 

the start. 

The first decades of the Prevention Movement had some striking 

successes, particularly in the area of biomedically-based causes of mental 

retardation. This included near-elimination of kernicterus (from Rh disease), of 

the major effects of PKU, of encephalopathy from congenital rubella and from 

measles encephalitis, and of the principal incidence of Tay-Sachs disease. 

Genetic counseling became much more accurate, and prenatal diagnosis of 

important conditions was often possible. Improved outlook for preterm babies 

was provided by the field of neonatology and the establishment of regional 

newborn intensive care units. Screening for lead poisoning, and deleading of 

involved homes, was more widely practiced. Increasing utilization of programs 

with early intervention for stimulation, nurturance, and education of infants at 

risk had valuable outcomes for both child and family. 

Now, however, as recent campaigns have been focused on broader social 

ills that result in suboptimal progress for children the record has become very 

frustrating. New liabilities for mothers and children, or entrenchment of 

continuing disadvantages, have placed significant segments of the population in 

jeopardy (the "new morbidity"). Numerous key indicators of child health 

and/or opportunity have failed to improve, even when energetic preventive 

activities have been marshalled. These include low birthweight rates, the racial 

42 
disparity in infant mortality rates, teenage fertility rates, substance abuse in 

pregnancy, birth incidence of HIV infection, and reports of child abuse. These 

concerns were the origin of the PCMR's selection of the theme, "Preventing the 

New Morbidity" for the 1991 conference. 

Three presentations at the Summit spoke to important new Federal 

direction and assistance in the prevention effort. The first and most important 

of these has been the formation (in 1988) of the Disability Prevention Program 

at the Centers for Disease Control in Atlanta. To date this program, originally 

spurred by the National Council on Disability, has provided capacity-building 

grants to 28 States. These will assist in the formation of State Prevention Plans 

and State Offices of Prevention, as well as bring support for community-based 

projects and various special studies. The second valuable force has been the 

release in 1991 by the Institute of Medicine of the report, "Disability in 

America: Toward a National Agenda for Prevention." And, finally, the 

appearance in 1990 of "Healthy People 2000," a modern tally of national goals 

and objectives relating to health and prevention of disease, establishes some 

respected targets for workers in developmental disabilities. All three of these 

achievements give special attention to prevention of secondary conditions in 

persons with disabilities. 

There is, indeed, a lot of activity currently within the scope of prevention 

of developmental disabilities. It must be admitted, however, that most of the 

substantial victories are occurring for concrete, low or moderate incidence 

conditions. While we succeed on a limited front, deleterious forces still seem 

to be gaining on us. There is no evidence to suggest that total prevalence 

scores can document any breakthrough. In many regards the current assignments (such as within the "new morbidity") are more numerous and tougher. 

The 25 recommendations derived during the Summit Conference are areas 

needing attention--such as research for etiology and epidemiology, mandatory 

curricula in preparation for parenthood, "consumer-friendly" services to remove 

barriers, assistance in employment, housing, and environment, and universal 

health insurance. It was also acknowledged that the Nation needs more 

consumer-based planning and interagency alliances. The Institute of Medicine 

(IOM) suggested a national advisory committee and Federal interagency 

43 
council. It was the judgment of the Summit Conference that for rectification of 

social ills, the country needs a mentality supporting social programs and true 

collaboration. 

44 
AGENCIES, ORGANIZATIONS, FOUNDATIONS, INSTITUTIONS 

INSTRUMENTAL IN FACILITATING EARLY IMPLEMENTATION OF 

PROGRAMS AND SERVICES KNOWN TO BE EFFECTIVE IN 

MINIMIZING THE OCCURRENCE OF MENTAL RETARDATION 

AND DEVELOPMENTAL DISABILITIES 

The positive forces at the "front line" for the prevention of mental 

retardation and developmental disabilities work within the domains of public 

health, social services and child welfare, education, and public assistance. 

These domains include a vast array of human services, devoted to the 

promotion of the condition of individuals, families, and society. It has often 

been noted that virtually all programs that are supportive for children in general 

can also be considered as preventive for developmental disorder. When a final 

tally is made of who is currently helping or can help, the list is huge. Beyond 

the direct territories mentioned above, there are background supportive elements 

as well, such as housing, employment, drug treatment, research, professional 

training, and advocacy that affect the final adequacy of child and family life. 

Many of the Federal agencies that have a facilitative role in early access 

to effective programs are described in the section of this report on "The 

Breadth of Federal Involvement." The most common sequence, of course, is 

assistance to State programs where direct client contact occurs. Included in the 

U.S. Department of Health and Human Services are: the Maternal and Child 

Health Bureau (support to State health departments via the Block Grants), the 

Administration on Developmental Disabilities (programs of the State 

Developmental Disabilities Councils and the University Affiliated Programs), 

the contributions of the Centers for Disease Control (Disability Prevention 

Program), with its State grants for local projects, the Administration for 

Children, Youth, and Families (Head Start, Children's Bureau, and the National 

Center on Child Abuse and Neglect); and in the U.S. Department of Education, 

the Office of Special Education and Rehabilitative Services (special reference to 

The Education of the Handicapped Act Amendments of 1986, P.L. 99-457). 

Ultimately one can also trace the work of the President's Committee on Mental 

Retardation, the Health Care Financing Administration, the National Institute of 

Child Health and Human Development, and the Office of Disease Prevention 

and Health Promotion. 

45 
The immediate implementation of prevention programs is often set by State 

agencies, and carried out by them or by city and community facilities. Within the 

health area this includes family planning, genetic counseling, prenatal care, 

newborn screening, infant tracking, developmental screening, lead screening, 

prevention of HIV infection, youth programs, etc. Community health centers and 

community nursing agencies are sensitive foci for critical preventive services. 

Departments of Education and the School Districts provide developmental screening, 

early intervention programs, and family life curricula. Social Service agencies offer 

child protective services and child welfare services. Public Welfare or Public 

Assistance agencies are charged with supporting needy families, and various 

advocacy centers (e.g. "Office for Children") provide monitoring of services. In 

some States the Department of Mental Retardation or of Developmental Disabilities 

offer supportive programs for young children, and the Developmental Disabilities 

Council may sponsor innovative interventions. The State's Office for Disability 

Prevention, when established, can coordinate and enhance the accessibility of these 

activities. 

Activities within the private sector have a sensitive place in the service world, 

such as the countless programs by Arc organizations for young children at a State or 

district level and local branches of United Cerebral Palsy. Family guidance, in the 

genetic service area, parent-to-parent support, and in advice about treatments, is 

provided by groups such as the National Tay-Sachs and Allied Diseases 

Association, the National MPS Society, the National Down Syndrome Congress, 

and the Epilepsy Foundation, or their affiliates. Family Planning Councils greatly 

supplement State facilities in counseling for contraception or pregnancy planning 

University Affiliated Programs (UAPs) and teaching hospitals may offer unique 

preventive services, and the private philanthropic foundations (Robert Wood Johnson, 

Cox, Noonan, etc.) are also bringing support to new initiatives for prevention. 

46 
APPENDICES:

Appendix A -- PCMR April, 1993 

Appendix B -- PCMR Executive Committee and 

Subcommittee Membership 

Appendix C -- PCMR February, 1991 

Appendix D -- Prevention Summit Program 

Participants and Exhibitors 

47 

APPENDIX A 

President's Committee on Mental Retardation 

April, 1993 

Donna E. Shalala, Chair 

Secretary, U.S. Department of Health and Human Services 

Albert L. Anderson, D.D.S., Vice Chair 

Ex Officio Members 

The Honorable Henry Cisneros, Secretary, U.S. Department of 

Housing and Urban Development 

The Honorable Federico Pena, Secretary, U.S. Department of 

Transportation 

The Honorable Robert B. Reich, Secretary, U.S. Department of 

Labor 

The Honorable Janet Reno, Attorney General, U.S. Department of 

Justice 

The Honorable Richard M. Riley, Secretary, U.S. Department of 

Education 

Mr. John Seal, Acting Director, ACTION 

Citizen Members 

Albert L. Anderson, D.D.S. 

Norma G. Bordelon 

Patricia A. Caggiano 

Jack T. Dulworth 

Patricia Foss 

Thomas G. Gunnings, Ph.D. 

Dagne B. Olsen 

Charlotte B. Parkinson, D.S.W. 

J. Alfred Rider, M.D., Ph.D. 

Mark A. Shiffrin 

Martin S. Ulan 

Kenneth L. Barun 

Robert E. Brown 

Dorothy C. Clark, R.N. 

Linda Felner 

Marcia Frey 

Karen Moffitt, Ph.D. 

Betty B. Osman, Ph.D. 

Edwina Dalton Phillips 

Donald Sapaugh 

E. Duane Thompson 

APPENDIX B 

PCMR EXECUTIVE COMMITTEE AND SUBCOMMITTEE MEMBERSHIP 

April, 1993 

Executive Committee

Albert L. Anderson, D.D.S., Vice Chair 

Dorothy C. Clark, R.N., First Vice Chair 

Kenneth Barun 

Dagne B. Olsen 

Betty B. Osman, Ph.D. 

Family and Community Services

Robert E. Brown, Chair 

E. Duane Thompson, Co-Chair 

Norma G. Bordelon 

Linda Felner 

Marcia Frey 

Charlotte B. Parkinson, D.S.W. 

Edwina Dalton Phillips 

Martin S. Ulan 

Ex Officio Members: 

Paul Hippolitus, DoL 

Rey Tejada, ACTION 

Michael Vader, DoE 

Full Citizenship and Justice

Dagne B. Olsen, Chair 

Thomas Gunnings, Ph.D., Co-Chair 

Patricia A. Caggiano 

Dorothy C. Clark, R.N. 

Jack T. Dulworth 

Mark A. Shiffrin 

Ex Officio Members: 

Louis Stewart, DoJ 

Robert Ashby, DoT 

Margaret Milner, HUD 

Prevention

Betty B. Osman, Ph.D., Chair 

J. Alfred Rider, M.D., Ph.D., Co-Chair 

Dorothy C. Clark, R.N. 

Patricia Foss 

Karen Moffitt, Ph.D. 

Donald Sapaugh 

Public Awareness 

Kenneth Barun, Chair 

Jack T. Dulworth, Co-Chair 

Robert E. Brown 

Dorothy C. Clark, R.N. 

Patricia Foss 

Karen Moffitt, Ph.D. 

Dagne B. Olsen 

Betty B. Osman, Ph.D. 

Donald Sapaugh 

APPENDIX C 

President's Committee on Mental Retardation 

February 1991 

Louis W. Sullivan, M.D., Chair 

Secretary, U.S. Department of Health and Human Services 

Albert L. Anderson, D.D.S., Vice Chair 

Ex Officio Members 

The Honorable Lauro Cavazos, Secretary, U.S. Department of Education 

The Honorable Elizabeth Dole, Secretary, U.S. Department of Labor 

The Honorable Jack Kemp, Secretary, U.S. Department of Housing & 

Urban Development 

The Honorable Jane A. Kenny, Director, ACTION 

The Honorable Richard Thornburgh, Attorney General, U.S. Department 

of Justice

Citizen Members 

Albert L. Anderson, D.D.S. 

Robert E. Brown 

Dorothy C. Clark, R.N. 

Jack T. Dulworth 

Ruth Govorchin 

Matthew G. Guglielmo 

Thomas Gunnings, Ph.D. 

Betty B. Osman, Ph.D. 

Edwina Dalton Phillips 

E. Duane Thompson 

Kenneth L. Barun 

Patricia A. Caggiano 

Linda Felner 

Vincent C. Gray 

Jean G. Gumerson 

William Kerby Hummer, M.D. 

Dagne B. Olsen 

Dean B. Owens 

J. Alfred Rider, M.D., Ph.D. 

George M. Wilson 

APPENDIX D 

PROGRAM PARTICIPANTS AND EXHIBITORS 

PCMR SUMMIT ON THE NATIONAL TO PREVENT MENTAL RETARDATION 

AND RELATED DISABILITIES 

Speakers

Summit Opening 

Albert L. Anderson, D.D.S. 

Vice Chairperson 

President's Committee on Mental Retardation 

San Diego, California 

Opening Statement 

William Kerby Hummer, M.D. 

Chairperson 

Prevention Subcommittee 

President's Committee on Mental Retardation 

Santa Monica, California 

Statement of Occasion..."The Challenge" 

Hugo Moser, M.D. 

Director 

Center for Research on Mental Retardation 

and Related Aspects of Human Development 

Baltimore, Maryland 

Keynote Address 

Duane Alexander, M.D. 

Director 

National Institute of Child Health 

and Human Development 

U.S. Department of Health and Human Services 

Bethesda, Maryland 

Luncheon Address 

Louis W. Sullivan, M.D. 

Secretary 

U.S. Department of Health and Human Services 

Washington, D.C. 

Exemplary State Planning to Prevent Mental Retardation and Related 

Disabilities Associated with Socioeconomic Conditions 

George Schmidt, Ph.D. 

Program Manager 

Health and Rehabilitative Services 

Tallahassee, Florida 
Speakers - (Con't) 

Roger Chapman 

Program Manager 

Disability Prevention Program 

Department of Public Health 

Des Moines, Iowa 

Deborah E. Cohen, Ph.D. 

Director 

Office for Prevention of Mental Retardation 

and Developmental Disabilities 

Department of Human Services 

Trenton, New Jersey 

Raymond Peterson, M.D. 

Director 

San Diego Regional Center 

 for Developmentally Disabled Persons, Inc. 

San Diego, California 
Presenters of Papers

Impact of the "New Morbidity" on Epidemiological Rates 

Godfrey Oakley, M.D. 

Centers for Disease Control 

U.S. Department of Health and Human Services 

Atlanta, Georgia 

Healthy People 2000 Objectives for the Nation 

Ashley A. Files 

Office of Disease Prevention and Health Promotion 

U.S. Department of Health and Human Services 

Washington, D.C. 

A National Prevention Agenda 

Allen Crocker, M.D. 

Children's Hospital Medical Center 

Boston, Massachusetts 

Preventing the "New Morbidity": A National Plan of Action 

Alfred Baumeister, Ph.D. 

Peabody College, Vanderbilt University 

Nashville, Tennessee 

Preventing Mental Retardation and Related Disabilities Associated 

with Socioeconomic Conditions 

Edward Zigler, Ph.D. 

Yale University 

New Haven, Connecticut 

The Role of Developmental Disabilities Councils and Agencies in 

Prevention Planning 

Deborah McFadden 

Commissioner 

Administration on Developmental Disabilities 

U.S. Department of Health and Human Services 

Washington, D.C. 
Presenters of Papers - (Con't)

Prevention Initiatives of the Administration on Children, 

Youth and Families to Meet the Needs of Socioeconomically 

Disadvantaged Mothers and Children 

Wade Horn, Ph.D. 

Commissioner 

Administration on Children, Youth and Families 

U.S. Department of Health and Human Services 

Washington, D.C. 

Support Services of the Maternal and Child Health Bureau in 

Prevention 

Vince L. Hutchins, M.D. 

Acting Director 

Maternal and Child Health Bureau 

U.S. Department of Health and Human Services 

Bethesda, Maryland 

Social Security Initiatives that Reduce Children's Morbidity 

Gwendolyn King 

Commissioner 

Social Security Administration 

U.S. Department of Health and Human Services 

Washington, D.C. 

Rehabilitation Services Administration Options for 

Interagency Prevention Initiatives 

Nell Carney 

Commissioner 

Rehabilitation Services Administration 

Office of Special Education and Rehabilitative Services 

U.S. Department of Education 

Washington, D.C. 

Ameliorating the Effects of Mental Retardation Related 

Disabilities in Aged Adults 

Joyce Berry, Ph.D. 

Commissioner 

Administration on Aging 

U.S. Department of Health and Human Services 

Washington, D.C. 
Presenters of Papers - (Con't) 

National Institute on Disability and Rehabilitation Research 

Interagency Collaboration and Research in Mental Retardation 

William Graves, Ph.D. 

Director 

National Institute on Disability 

and Rehabilitation Research 

U.S. Department of Education 

Washington, D.C. 

Provisions of the Education of the Handicapped Act -- Part H 

Michael E. Vader 

Deputy Assistant Secretary 

Office of Special Education 

and Rehabilitative Services 

U.S. Department of Education 

Washington, D.C. 

Special Education Service Delivery for a Changing Population of 

Students with Disabilities 

Judy Schrag, Ph.D. 

Director 

Office of Special Education Programs 

U.S. Department of Education 

Washington, D.C. 

Substance Abuse and Teratogenic Factors 

Judy Howard, M.D. 

Professor of Clinical Pediatrics 

University of California at Los Angeles 

Los Angeles, California 

Professional Training to Meet the Needs of Mothers and Children 

with HIV Infection and AIDS 

Herbert J. Cohen, M.D. 

Professor of Pediatrics and Rehabilitation Medicine 

Albert Einstein College of Medicine 

Bronx, New York 

Report of the World Summit on Children 

James M. Sherry, M.D., Ph.D. 

UNICEF 

New York, New York 
Presenters of Papers - (Con't) 

Return Us the Children -- Societal Prerequisites 

Travis Thompson, Ph.D. 

University of Minnesota 

Minneapolis, Minnesota 
Moderators 

Panel I What We Can and Must Do 

Christopher DeGraw, M.D. 

Coordinator, Children and School Programs 

Office of Disease Prevention and Health Promotion 

U.S. Department of Health and Human Services 

Washington, D.C. 

Panel II Preventing the "New Morbidity"... 

Improving Options for Mothers and Children 

M. Doreen Croser 

Executive Director 

American Association on Mental Retardation 

Washington, D.C. 

Panel-III Preventing the "New Morbidity"... 

Cooperative Multi-agency Approaches and Options 

James Harrell 

Deputy Director 

Office of Disease Prevention and Health Promotion 

U.S. Department of Health and Human Services 

Washington, D.C. 

Panel IV Improving the Health Status of Children 

Rudolph Hormuth 

Specialist in Services to Mentally Retarded Children 

Maternal and Child Health Bureau 

Public Health Service 

U.S. Department of Health and Human Services 

Rockville, Maryland 

Panel V Exemplary State Planning to Prevent 

Mental Retardation and Related Disabilities 

Associated with Socio-economic Conditions 

Michael J. Adams, Jr., M.D. 

Medical Epidemiologist 

Division of Birth Defects and Developmental Disabilities 

Center for Environmental Health and Injury Control, 

Centers for Disease Control 

Public Health Service 

U.S. Department of Health and Human Services 

Atlanta, Georgia 
Moderators - (Con't) 

Closing Plenary 

Fred Krause 

Director 

Rehabilitation and Health Services 

Partners of the Americas 

Washington, D.C. 
WorkGroup Leaders 

Work Group I Application of the "New Morbidity Model" 

to Comprehensive State Planning 

Alfred Baumeister, Ph.D. 

Director 

John F. Kennedy Center for Research 

on Education and Human Development 

Peabody College, Vanderbilt University 

Nashville, Tennessee 

Work Group II The Role of State and Federal Government in 

Facilitating Comprehensive State Planning 

James Harrell 

Deputy Director 

Office of Disease Prevention 

and Health Promotion 

U.S. Department of Health and Human Services 

Washington, D.C. 

Work Group III Strategies for Addressing Epidemiological 

Needs, Concerns, and Interests 

Godfrey Oakley, M.D. 

Director 

Division of Birth Defects and 

Developmental Disabilities 

Centers for Disease Control 

U.S. Department of Health and Human Services 

Atlanta, Georgia 

Work Group IV Successful Planning of Constituency Group, 

Interagency and/or Intra-agency Initiatives 

that Support Comprehensive Planning 

Sonya Oppenheimer, M.D. 

Director, Myelomeningocele Program 

Assistant Director, Cerebral Dysfunction Program 

and Neural Birth Defects Program 

Cincinnati Center for Developmental Disabilities 

Cincinnati, Ohio 
WorkGroup Leaders - (Con't) 

Work Group V Practical Approaches to the Formulation and 

Endorsement of National Prevention Policy 

Allen Crocker, M.D. 

Director 

Developmental Evaluation Clinic 

Children's Hospital Medical Center 

Boston, Massachusetts 
Exhibitors

"Prevention 1995 - California's Future" 

Department of Development Services 

Sacramento, California 

Mary Lou Hickman, M.D.

Elwyn, Inc. 

Elwyn, Pennsylvania 

Carol Cherrix 

"Forging a New Era" 

National Association of Developmental 

Disabilities Council 

Washington, D.C. 

Susan Ames Zierman 

National Association for the Dually 

Diagnosed 

Kingston, New York 

Michelle Jordan 

National Institute on Disability 

Rehabilitation Research 

Washington, D.C. 

James Doherty 

North Carolina Office for Prevention 

Division of Maternal and Child Health 

Raleigh, North Carolina 

Donna Scandlin 

Office for Prevention of Mental 

Retardation and Developmental 

Disabilities 

North Brunswick, New Jersey 

Glenna Gundan

"Outreach for Parents" 

National Parent Network on Disabilities 

Alexandria, Virginia 

Patty Smith 

"Prevention Education Exhibit" 

Retarded Citizens/Atlanta 

Atlanta, Georgia 

Martha Towle 

Social Security Administration 

Baltimore, Maryland 

Lorraine Gunning 

The National Center for Education in 

Maternal and Child Health 

Washington, D.C. 

Maureen R. Seller