U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES • President's Committee on Mental Retardation 

The President's Committee 

on Mental Retardation - 1987 

REPORT TO THE PRESIDENT 

 The President's 

Committee on Mental 

Retardation 20th 

Anniversary 

Symposium 

 The National 

Strategy Conference 

on Mental 

Retardation and 

Mental Health 

 The National 

Conference on State 

Planning for the 

Prevention of Mental 

Retardation and 

related 

Developmental 

Disabilities

Preface 

The President's Executive Order of May 11, 

1966, establishing the President's Committee on 

Mental Retardation (PCMR), and subsequent 

Presidential Executive Orders, have directed the 

Committee to submit an annual report to the 

President on the status of mental retardation in the 

nation. 

The current report provides highlights of three 

conferences held during Fiscal Years 1986 and 

1987 and extends building blocks of knowledge 

and innovation that have typified the work of the 

Committee over the past two decades. To 

commemorate this span of time, a special Twentieth 

Anniversary Symposium was held to review the 

gains and plan for the future. Appropriately, its 

theme was, "Maximizing the quality of life for 

individuals with mental retardation and other 

developmental disabilities." 

The symposium reviewed the significant 

accomplishments of the past twenty years with a 

forward view of issues needing attention as we build 

on past and current approaches to rights and 

protections, community living, education, 

employment, and the prevention of mental 

retardation and related disorders. 

The PCMR sponsored a National Strategy 

Conference on Mental Retardation and Mental 

Health in Washington, D.C. The purpose of this 

conference was to bring together our nation's 

leadership in the fields of mental retardation and 

mental health in order to delineate the state of the 

art relative to the diagnosis, care, and treatment 

of citizens with mental retardation/mental 

illness, as well as to chart a national course for the 

support and integration of citizens with these challenging needs into the confluence of family and 

community life. 

The PCMR recognized that citizens with these 

needs constitute one of the most underserved and, 

at times, forgotten segments of the population. 

With this in mind, the PCMR called together 

governmental, professional, and parental 

representatives from across the nation to define 

the nature and extent of the problem, programs, 

and services that promise hope for substantive 

improvement in the quality of life of citizens with 

mental retardation/mental illness. 

The Conference focused on several major themes: 

epidemiology, prevention, training, research, 

clinical diagnosis and treatment challenges, issues 

centering on the family system, community 

treatment-management alternatives, model 

service programs, and legal and legislative 

barriers and supports. To analyze these critical 

issues, the PCMR invited academic, governmental, 

and parental experts from across the nation for 

this national conference. Each of the major 

themes was reviewed, analyzed, and critically 

questioned through individual presentations, panel 

discussions, and audience participation. 

Although, there was consensus on most basic 

issues and suggested strategies for change, a few 

issues created debate and the need for further study 

and analysis. 

In the area of prevention, another major 

conference was held which focused on "planning 

at the State and Territorial level." To assist the States 

in preparing meaningful approaches to this costeffective strategy, the Committee published a 

document entitled, A Guide for State Planning: 

For the Prevention of Mental Retardation and 

Related Disorders. This guide is a useful 

resource for the States as they write or review 

existing plans for prevention programs. This effort, 

it should be noted, is a part of the Federal 

prevention initiative within the U. S. 

Department of Health and Human Services in 

conjunction with the Surgeon General as directed 

by the President. 

Currently an estimated six million Americans1

 of 

all ages experience mental retardation, and every 

five minutes another child is born with this 

disorder. 

Mental retardation and related difficulties 

present major social, educational, health, and 

economic problems for our nation. We have also 

learned that fifty percent of all cases of mental 

retardation can be prevented through known 

intervention strategies such as proper nutrition, 

immunization, genetic counseling, early treatment 

of diseases, and alcohol, drug, and child abuse 

prevention, to name a few. 

In addition, effective prevention programs will 

reduce personal loss, grief, and anxiety to individuals 

and their families who are affected by this 

disability, and will result in cost savings to our 

nation. 

Albert L. Anderson, D.D.S. 

Vice Chairperson 

President's Committee on 

Mental Retardation 

1 The Problem of Mental Retardation, DHEW Publication No. 

(OHDS) 79-21021.

iii 
_ 
Acknowledgement 

Acknowledgement is given to Albert L. 

Anderson, Vice Chairperson, President's 

Committee on Mental Retardation (PCMR), and 

Susan Gleeson, former Executive Director, 

PCMR, for their leadership in organizing the 

conferences and the preparation of the present 

Report to the President. 

Recognition is given to PCMR members Dr. 

Elsie D. Helsel, Chairperson, 20th Anniversary 

Symposium, Dr. Lee A. Christoferson and Dr. 

William Kerby Hummer, Chairpersons, 

respectively, Subcommittee on Prevention, and 

Vincent C. Gray, Chairperson, Subcommittee on 

Family and Community Services, for their 

leadership in development of the individual 

conferences; and PCMR staff who served as 

project officers for the three national conferences: 

Laverdia Roach, Coordinator, Subcommittee on 

Prevention, who served as project officer for 

both the PCMR 20th Anniversary Symposium 

and the National Conference on State Planning 

for the Prevention of Mental Retardation and 

Related Developmental Disabilities; and 

Michael Albarelli and Judy Moore, who were 

Coordinators, respectively, for the 

Subcommittee on Family and Community 

Services, who served as project officers for the 

National Strategy Conference on Mental 

Retardation and Mental Health. 

Dr. George N. Bouthilet, Coordinator, 

Subcommittee on Full Citizenship, served as 

project officer on the contract for the 

preparation and editing of the manuscript for the 

Report to the President. Dr. Leonard G. 

Perlman, an independent consultant in the 

field of disability and rehabilitation, served as 

the contractor. He was charged with reviewing 

all conference materials and preparing the 

manuscript. Jean G. Gumerson, Chairperson, 

and the members of the Subcommittee on Public 

Affairs were responsible for reviewing the manuscript prior to publication. 

Acknowledgement is given to all participants 

in the conferences and to all PCMR members 

and staff who assisted in providing support 

toward the success of the conferences, culminating 

in this Report to the President. Special note is taken 

of the work done by Jim F. Young, Deputy 

Executive Director, PCMR. 

Vivian Bricklin Levin 

Executive Director 

President's Committee on 

Mental Retardation

v 
President's Committee on Mental Retardation 

Members 

The Honorable Otis R. Bowen, M.D. 

Chairperson 

Albert L. Anderson, D.D.S. 

Vice Chairperson 

Lucia L. Abell 

Martin S. Appel 

Howard P. Blackman, Ed.D. 

Richard E. Blanton1

James Bopp, Jr.3

Robert V. Bush, C.P.O.5

Patricia A. Caggiano 

Lee A. Christoferson, M.D.3

Dorothy Corbin Clark, R.N. 

Margaret Ann Depaoli 

Jack T. Dulworth 

Lois Eargle 

Thomas J. Farrell2

Vincent C. Gray2, 4

Jean G. Gumerson 

Matthew J. Guglielmo 

Madeline B. Harwood 

Elsie D. Helsel, Ph.D.2

William Kerby Hummer, M.D. 

Roger Stanley Johnson, M.D. 

Lawrence A. Kane1

Richard J. Kogan2

James L. Kuebelbeck1

Jerry P. Larson, M.A. 3

D. Beth Macy2

Alexander L. Napolitano 

Timothy J. O'Brien1

J. Alfred Rider, M.D., Ph.D. 

Fred J. Rose2

Ung Yun Ryo, M.D., Ph.D. 

Dwight Schuster, M.D. 

Anne C. Seggerman3

Marguerite T. Shine2

Lila G. Thompson1

Virginia J. Thornburgh3

Martin Ulan 

Ruth A. Warson, R.N. 3

1 Term expired 1985 

2

 Term expired 1986 

3

 Term expired 1987 

4

 Reappointed 1987 

5

 Deceased 1988

Staff 

Vivian B. Levin 

Executive Director 

Susan Gleeson, R.N., M.S.N. 

Executive Director* 

Jim F. Young 

Deputy Executive Director 

Michael H. Albarelli* 

Janet T. Bolt 

Nancy O. Borders 

George N. Bouthilet, Ph.D. 

Peggy Butler 

Ashot Mnatzakanian 

Jacklyn MacInnis* 

Judy Moore* 

Essie Norkin (deceased May 1987)* 

Robert Polson* 

Laverdia T. Roach 

Rosa Singletary 

Bena Smith 

David Touch* 

Terry Visek 

*Former staff members who were employed at 

some time during the period between 1985-1987.

Ex-Officio Members 

Donna M. Alvarado, Director, ACTION 

William Bennett, Secretary, U.S. Department of 

Education 

William Brock, Secretary, U.S. Department of Labor 

Edwin Meese, Attorney General, U.S. Department of 

Justice 

Samuel Pierce, Secretary, U.S. Department of Housing 

and Urban Development 

vi 
Table of Contents 

Preface ...................................................................................................................................... iii 

Acknowledgements ........................................................................................................... v

President's Committee on Mental Retardation: 

List of Members and Staff ....................................................................................... vi 

Highlights from the President's Committee on 

Mental Retardation 20th Anniversary Symposium .......................................................... 1 

Highlights from the National Strategy Conference 

on Mental Retardation and Mental Health ........................................................................ 7 

Highlights from the National Conference on 

State Planning for the Prevention of 

Mental Retardation and Related 

Developmental Disabilities .......................................................................................... 12 

vii 

Highlights From the President's Committee on 

Mental Retardation 20th Anniversary Symposium 

Introduction 

The 20th Anniversary Symposium was held on 

May 12, 1986, in Washington, D.C. Its theme was: 

"Maximizing the quality of life for individuals with 

mental retardation and other developmental 

disabilities." The papers presented at this meeting 

revealed careful research and provided bench marks 

whereby comparisons could be made ten and twenty 

years hence, and progress or the lack thereof noted. 

The authors of the papers were guardedly optimistic 

about the future and reminded us that much remained 

to be done to bring persons with mental retardation 

and developmental disabilities into the mainstream of 

community life. 

Background 

This symposium sponsored by the President's 

Committee on Mental Retardation (PCMR) brought 

together a number of the nation's leaders in the field, 

including representatives of the academic and 

research community, advocacy and consumer 

organizations and government to review progress of 

the past two decades in the areas of prevention, 

research, legal rights, economics, services and 

programmatic trends. 

Paper Presentations 

Brief summaries of highlights of the papers are presented in this section of the report. 

Rights, Responsibilities and Responsiveness 

In a paper delivered by Henry V. Cobb, Ph.D., he 

noted that as members of the President's Committee 

on Mental Retardation, we have for the past twenty 

years responded to the mandate of our appointment 

to gather information from the entire country on the 

problems, needs and concerns of mentally retarded 

and other developmentally disabled persons and to 

report our recommendations to the President of the 

United States. We can look back over those twenty 

years of the Committee's activities and the many 

prior years of personal involvement with the rights 

and interests of people with mental retardation and 

say, "we have indeed come far!" We have learned 

that the rights of persons with mental retardation are 

not a simple all-or-none matter achieved by 

declaration or even by a set of landmark legislative 

and juridical decisions, but are embedded in a 

complex interplay of social forces where efforts to 

improve the quality of life for these citizens meet 

with resistance in the historically established underlayers of attitude, custom, legal precedent and 

institutional rigidity derived from past attitudes. 

The centerpiece of our approach was officially 

launched in 1975 and submitted to then President 

Ford in a report entitled, Mental Retardation: 

Century of Decisions. This report was based on the 

following fundamental premises: 

People with mental retardation have the same rights, 

legal and constitutional, as every other United States 

citizen, including the rights of due process and equal 

protection of the laws. 

People with mental retardation can be more 

independent and function more competently than is 

commonly believed—mental retardation and 

incompetency are not synonymous. 

Full citizenship exercised by a person with mental 

retardation in a community setting is possible and in 

the public interest. 

For the actual realization of their rights as citizens, 

persons with mental retardation require 

developmental and supportive services to bridge the 

gap created by their disabilities. 

As an extension of these premises, the following 

rights have since been vigorously pursued and 

include: 

The rights of due process and equal protection of the 

laws. 

The right to appropriate educational opportunity in 

the least restrictive setting. 

The right to residential programs and other services 

in a setting most conducive to development and 

independence. 

The right to equal employment opportunity.

1 
The right of equal access to medical treatment and 

service. 

The right to equal protection in the criminal justice 

system. 

The responsibility to help implement these rights is 

distributed across the depth and breadth of our society 

and includes a combined effort by the person with a 

disability, the parents, the lay community, the professional community, and the public authority at the 

local, State, and Federal levels. The momentum that 

has gathered over the past two decades is reflected in 

the following sections of this report to the American 

people. 

Programmatic Trends for Individuals with Mental 

Retardation 

In a paper delivered by Elizabeth M. Boggs, Ph.D., 

she noted the trends over a twenty-year period 

showing major changes that have worked to help 

bring citizens with mental retardation and other 

developmental disabilities into the mainstream of 

community life. It should be remembered that these 

positive changes began to take shape long before the 

1960's and continued positive actions are needed in 

granting full citizenship to persons with mental 

retardation and other developmental disabilities. Dr. 

Boggs listed some milestones of significance as 

follows: 

The 1960's 

The American Federal system entered a new phase 

where legislation established Federal-State-local relations in new fields of activity on a vast scale with a 

national purpose. In this new model, the Federal grant 

was conceived as a means of enabling the government 

to achieve its objectives, with national policies defined 

in very general terms by the Congress. A part of the 

Great Society actions by Presidents Kennedy and 

Johnson was the "equalization of individual 

opportunity." Some of the main goals and progress 

which related to direct services included the following: 

Improve standards and develop a national system of 

accreditation. 

Expand the hospital improvement program as applied 

to State-operated residential facilities. 

Develop an insurance system to give parents a free 

choice in selecting residential services. 

Bring mental health authorities into more active participation in developing programs for persons with 

mental retardation who are emotionally disturbed. 

Make health and education services available to every 

child from birth as his or her legal right. 

Develop fixed facility and mobile health, education 

and social service programs for rural areas. 

Include the needs of citizens with mental retardation in 

model cities planning. 

The 1970's 

During the decade of the 1970's attention turned to 

institutional reform and the goals embraced 

community placement and the movement toward 

community living. In Mental Retardation 1972, 

PCMR quantified the goal by citing 186,700 persons 

residing in 202 public institutions with annual 

admissions of 15,000 and releases of 14,700, with a 

target of 62,000 returned to the community. Measured 

by reduction in census of State facilities for mental 

retardation, this goal was met by 1982. One cannot be 

certain that all who left the facilities returned to the 

community. Perhaps as many as 20 percent were 

transferred to intermediate care facilities or nursing 

homes. Best estimates show that between 69 and 70 

thousand persons remained in facilities throughout the 

1970's. 

The 1980's 

Programmatically, developments in the 1980's are 

being driven both by the wave of changing provider 

and consumer opinion about what should be done, and 

by the Federal legislation of the 1970's. It should be 

noted that the White House Conference on 

Handicapped Individuals set a new tone which 

became the legacy of the 1970's legislation and resulted 

in positive effects well into the 1980's. 

The focus was on individuals, people who may 

differ from one another, who cannot be stereotyped, 

and who have unique potentials. The new approaches 

were individualized education programs, individual 

habilitation plans, individualized rehabilitation plans, 

discrimination outlawed against individuals, advocacy 

for individuals and finally self-advocacy. It was plain 

to see that the time and concepts embodied in the 

legislation of the 1970's had molded the programs and 

events of the 1980's. 

The Future 

A theme that pervades the future of this field is the 

interdependence of disabled persons and others as 

integration is increasingly practiced. In particular, 

persons

2 
with disabilities cannot escape the impact of macroeconomic and demographic trends, especially with the shift 

in expenditures for social services. Our sights must 

continue to seek new methods and challenges to meet the 

coming century. We need, for example, to be attuned to 

the changing patterns of work for everyone, with greater 

specificity of job matches from the point-of-view of job 

satisfaction, with the importance of the non-wage related 

benefits of work, and the impact of technology and the 

transformation of the industrial economy into the 

information society. 

A paper delivered by Robert M. Gettings on service 

delivery trends provided some interesting data showing 

the changes over the past two decades. At the time 

PCMR was initially established, most States supported 

few, if any, alternatives to placement in large publiclyoperated residential facilities. Severely and profoundly 

retarded youngsters were routinely denied admission to 

public schools. The concept of a community-based group 

home was new and largely untested. While many States 

had a blueprint for the development of a comprehensive 

array of services, such plans were still on the drawing 

boards with a few community programs funded 

primarily through private sources. 

Some of the notable changes included the following: 

A gradual but steady decline in the number of persons 

with mental retardation residing in large, State-operated 

institutions. The average population served in State 

residential facilities dropped from a peak of almost 

195,000 in 1967 to under 110,000 in 1984. 

A corresponding increase in the number of persons 

with mental retardation residing in various types of 

community living arrangements. Surveys have shown 

that retarded persons living in small group residences 

nearly doubled during the five-year period between 1977 

and 1982, from 22,449 to 42,018. As a result, the 

proportion of persons living in facilities with 15 or fewer 

residents increased from 16.3 percent of all persons 

receiving residential care in 1977 to 26.1 percent in 1982. 

An expansion in the range, quantity, and quality of 

services provided through the public schools. During the 

1984-85 school year, over 4.1 million children with 

handicapping conditions received special education services. In contrast, just prior to the enactment of the 

Education of All Handicapped Children's Act of 1975 

(PL 94-142), there were 1.75 million children with 

handicapping conditions between birth and 21 years of 

age receiving no educational services and an additional 

2.5 million receiving inappropriate services. 

A growing emphasis on providing employment opportunities for adults with moderate to severe mental retardation in integrated work settings. A national survey by 

the National Association of State Mental Retardation 

Program Directors revealed that most States have a 

strong philosophical, programmatic, and financial cornmitment to developing supported employment and programs that will allow persons with mental retardation to 

be employed in integrated work settings. 

The above changes in direction and focus have had a 

major impact on the structures through which services 

are financed and delivered. Some examples include: 

The establishment of clearly articulated, organizational 

entities to orchestrate the delivery of State local services. 

Most States have established a local or areawide service 

delivery network with a county or regional unit serving as 

hub of the network. 

By 1982, nearly half (47 percent) of residents with 

mental retardation were being served in privately operated facilities. If we look specifically at small, 

community-based homes, the shift and progress is even 

more dramatic. In 1982, 92.5 percent of all retarded 

persons living in residential facilities with 20 or fewer 

beds were in homes operated by private agencies or 

individuals. 

An expanded list of service options. Over the years, most 

States' mental retardation/developmental disabilities 

(MR/DD) agencies have added several new categories of 

residential and day services that are eligible for public 

support. These new service options have evolved to fill in 

the service gaps to assist service providers in meeting the 

specialized needs of persons with mental retardation. 

The growing influence of Federal policy. Between 1977 

and 1984, State expenditures for MR/DD services increased by 138 percent. Federal receipts of State MR/ 

DD agencies, however, grew by more than 250 percent 

over this same period. As such, the Federal share of State 

MR/DD budgets rose from 27 percent in 1977 to 40 

percent in 1984. 

An expansion in the eligible target population. In response to the passage of the Federal Developmental 

Disabilities Act of 1970, over half the States modified 

their eligibility requirements to permit persons with 

developmental disabilities who do not have mental retardation to receive day and residential services provided 

or funded by the State MR/DD agency. 

Rapid escalation in the per client cost of providing 

residential and day services. Between 1970 and 1982, the 

per diem cost of care in State mental retardation institutions skyrocketed from $5,000 to $32,000 annually. An 

examination of all outlays for all types of services 

supported by MR/DD agencies revealed that nationwide 

expenditures topped $7.5 billion in Fiscal Year 1985, or 

more than double the amount spent eight years ago in 

1977.

3 
In developing effective service delivery systems, the 

following guiding principles should be included: 

 Individually designed and executed programs. This 

should be a central focus in any organized attempt to 

assist persons with mental retardation. 

 Maximum opportunity for personal growth and development, i.e., to assist every client in attaining 

optimal development. 

 A diverse array of program alternatives is necessary. 

 Integration of clients into the mainstream of society. 

 Safeguard basic rights. This is especially important 

since many persons with mental retardation are 

unable to fully exercise their human and civil rights 

without assistance. 

 High quality services are needed. All facilities and 

programs should operate in compliance with 

applicable Federal, State, and local standards. 

 Access to a comprehensive and coordinated array of 

services. In addition to offering a wide diversity of 

service options, a service system must have 

established linkages to ancillary health, education, 

and other human service networks and be in a 

position to offer clients specialized generic services. 

 The efficient and economical operation of service 

facilities and programs under its jurisdiction. A service system must have the capacity to use the 

resources at its disposal in a manner which 

maximizes the return on society's investment. 

Robert Gettings summed up his findings by stating, 

"History teaches us that the solutions to our problems 

usually lead to new and unanticipated challenges. 

Therefore, our chances of success will be enhanced if 

we proceed with an open mind and a willingness to 

learn from our mistakes." It is imperative that we be 

prepared to adjust the current system to meet the new 

demands of the future and expected changes in 

economics, demographics, and attitudinal shifts and 

competing values. 

Research and Prevention 

Richard L. Masland, M.D., pointed out that in a 

survey that he conducted in collaboration with T. 

Gladwin and S. Sarasen in the mid-1950's, mental 

retardation had numerous problems; these included 

the following: 

 Few of our large training centers for citizens with 

mental retardation were located in close proximity 

to our university and medical centers. 

 Much of our information regarding social and environmental factors was questionable because 

retrospective data was unreliable, and pathological 

studies were of limited value because no history of 

causation was available. There was a great need for 

prospective studies of mental retardation. 

 Crucial questions remained regarding the issues of 

the problems of pregnancy and the care of the 

newborn. These problems cut across disciplinary 

lines. 

 We noted that these issues of mental retardation extended broadly throughout science, and that 

solutions would need both laboratory and clinical 

investigations. 

Dr. Masland noted that the challenges outlined 

above have essentially been met thanks to the support 

of both the public and private sectors and the 

leadership of the President's Committee on Mental 

Retardation. For example, there are now 47 

University-Affiliated Programs (UAPs) designed to 

bring the problem of mental retardation and other 

developmental disabilities into the mainstream of 

university training and research. The Kennedy 

Foundation has established a number of multidisciplinary programs within our most prestigious 

universities. Under Public Law 88-196, twelve 

multidisciplinary research centers were created whose 

central focus is basic research into mental retardation. 

In the related field of child neurology, there are now 

over 500 well-trained specialists. Since 1958, the 

National Institutes of Health (NIH) have engaged in a 

collaborative perinatal project seeking answers to 

better understanding of the progress of pregnancy and 

its effect on the newborn. Since the early studies, we 

have gained much knowledge to supplement or replace 

previously weak concepts of perinatal factors causing 

mental retardation. The positive effects of our inquiries 

have been exciting and illuminating. There has even 

evolved an entirely new field of neonatology to better 

understand every aspect of pregnancy, delivery, and 

child development. Currently, almost every major 

university-affiliated program has a Neonatal Intensive 

Care Unit with many also having active 

multidisciplinary research teams. 

To add to the fund of knowledge in basic research in 

mental retardation, the creation of the National Institute 

of Child Health and Human Development assisted 

with a focus on research on pregnancy and child 

development. Much research has also come from our 

studies of the nervous system and its diseases through 

the support and research efforts of the National 

Institute of Neurological, Communicative Disorders 

and Stroke. 

The past twenty years have witnessed dramatic advances in our ability to control some causes of mental

4 
retardation. Specifically, we have practically 

eliminated rubella, kernicterus, cretinism, and 

phenylketonuria and markedly reduced the impact of 

post-natal infections. With all these advances, 

however, it is unlikely that there has been any 

reduction in the overall prevalence of mental 

retardation. Improved techniques of perinatal care have 

prevented brain damage in many infants, especially 

low birthweight babies. However, the survival of very 

low birth weight infants who previously died has 

probably produced at least an equivalent number with 

neurological impairments who survive. 

It is unfortunate that the gains made in the area of 

severe retardation are overshadowed by a lack of 

progress in the control of factors producing the mild to 

moderate forms of retardation. These factors are complex and, in some cases, poorly defined and include 

such areas as: unfavorable social and economic 

environments, poor maternal education, low maternal 

intelligence levels, teenage pregnancy, exposure to 

alcohol and other toxins, lack of prenatal care, and 

inadequate or improper nutrition. Dr. Masland stated 

that these factors will not be changed until there is a 

change in social attitudes toward pregnancy and the 

rearing of children. Perhaps research over the next two 

decades should focus on how this might be best 

accomplished. 

Prevention and Research: Behavioral Aspects 

In his presentation, Dr. Alfred A. Baumeisier noted 

that there are a great many sources of mental 

retardation known to professionals, policy makers, and 

other concerned citizens. Over 200 biomedical 

etiologies have already been identified and described in 

the literature. Additional biological and environmental 

causes continue to be discovered with great regularity. 

The Fragile-X Syndrome, for example, probably 

accounts for many who previously would have been 

diagnosed a few years ago as "unknown prenatal 

influences." 

Evidence is becoming increasingly abundant that 

multivariate explanatory models involving biological, 

social, and ecological variables linked together in a 

common matrix will ultimately provide a much more 

valid and useful basis from which to generate cause 

and effect as well as intervention and prevention 

strategies. We need to understand that the uncertainties 

of etiology, symptomatology, and treatment of mental 

retardation will not yield to simplistic unidimensional 

models. 

Because social, cultural, and economic divergencies 

are so deeply ingrained in our society, they are difficult 

for the researcher and the practitioner to isolate and 

control. In addition, research yielding definitive results 

in this area is exceedingly difficult to conduct. Despite 

this factor, evidence gathered over the past five years 

indicated that these elements may be the main factors 

associated with mental retardation, learning disabilities, 

and affective disorders and may contribute to severe 

brain damage and cerebral palsy as well. Despite the 

difficulties inherent in this type of research, we have 

amassed a great deal of knowledge from which to 

continue our search. Some of these areas include: 

 Teenage pregnancy—While teenage births 

accounted for 13 percent of all births in the United 

States during 1983, their infants represented 20 

percent of all low-birthweight babies. There is, of 

course, a well established link between lowbirthweight and a greatly elevated risk of infant 

mortality and other physical problems, including 

mental retardation. 

 Prenatal care—There is considerable evidence that 

timely and adequate prenatal care is a major 

influence in reducing preterm and low-birthweight 

deliveries, thereby decreasing the risk of infant 

mortality and morbidity. While the greatest risk is 

borne by the poor, the disadvantaged, and the 

disenfranchised, in human and financial terms the 

cost is distributed over our entire society. One 

positive approach is to educate adolescent and poor 

mothers as to the need for proper prenatal care. 

 Prenatal exposure to environmental hazard—A 

number of conditions involving both biomedical 

and behavioral aspects are sufficiently clear-cut to 

provide excellent models for understanding how 

quality of life might be improved through medical, 

behavioral, and educational intervention. One prime 

example of a cause of congenital malformations and 

neurologic handicaps is Fetal Alcohol Syndrome 

(FAS). The tragedy is that FAS is totally 

preventable. These are not new issues, but ones that 

have not, as yet, been addressed adequately. 

 Socioeconomic status—Under this broad category 

there are usually three factors that are emphasized 

when we seek correlations with morbidity: income, 

maternal education, and occupation. While the 

etiology of some retardation can be traced to 

metabolic, genetic, and traumatic factors, and certain 

brain infections and toxins may cause severe 

cognitive impairment, a large group of children 

suffer from mental retardation due to biological and 

social variables operating in a dynamic and 

inseparable fashion. We now know that regardless 

of the child's health status at birth, the physical and 

social environment either enhances or reduces 

potential for normal development. Another factor 

related to cultural and ethnic effects is stress. The 

way a woman responds to her environment has an 

impact on pregnancy outcome. Some results of 

research, while not as yet conclusive, indicate a 

possible association between low-birthweight and 

activities that require long periods of standing and 

other significant amounts of physical stress.

5 
• Additional data links psychological stress to a 

number of other undesirable pregnancy outcomes 

such as fetal distress, neonatal motor 

immaturity, perinatal deaths, and congenital 

anomalies. 

Research and prevention continue to offer 

some difficult and exciting challenges, but we 

have come a long way in the past two decades—

this offers much hope in seeking useful and 

dynamic interventions to some very complex 

problems. 

Summary 

Dr. Leonard W. Mayo, in his summary of the 

Twentieth Century Symposium, indicated that, 

"Society has the responsibility to create the 

conditions or settings in schools, workplaces, 

and the community at large. There is no 

question that there is a far greater understanding 

among the general public of mental retardation 

and other developmental disabilities than was 

true twenty years ago. The public image of a 

child and adult with mental retardation has 

undergone a positive change. This is due not 

only to professional efforts, but to the 

cooperation of the media and the success of 

people with disabilities themselves in fulfilling 

their role as citizens." 

As we rejoice in the progress made, we must not 

forget that there are many who are not served and 

many more who are not served well. This is, as Dr. 

Mayo noted, the challenge of the future.

6 
Highlights From the 

National Strategies Conference on 

Mental Retardation and Mental Health 

Introduction 

The President's Committee on Mental Retardation 

(PCMR) sponsored a major national conference on 

Mental Retardation and Mental Health on October 

30-31 and November 1, 1985, in Washington, D.C. 

The purpose of the conference was to bring together 

our nation's leadership in the fields of mental health 

and mental retardation in order to better understand 

the state-of-the-art relative to the epidemiology, 

diagnosis, care and treatment of persons with the 

dual diagnosis of mental retardation and mental 

illness, as well as to chart a national course for the 

support and integration of citizens with these 

challenging needs into the mainstream of family and 

community life. 

Background 

The President's Committee on Mental Retardation 

has long recognized that persons with mental 

retardation and a mental illness comprise one of the 

most under-served segments of the population. As 

such, the PCMR called together governmental, 

professional, and parent representatives from across 

the nation to define the nature and extent of the 

problem and to formulate specific recommendations 

for substantive improvement in the quality of life for 

persons with this dual diagnosis of mental retardation 

and mental illness. 

Paper Presentations 

The conference focused on major issues including 

epidemiology, prevention, training of professionals, 

clinical diagnosis and treatment, research, the family, 

community alternatives, model service programs, 

and legal and legislative barriers and supports. 

Papers on Epidemiology 

One of the papers noted that the incidence rate is 

dramatically higher than in the non-mental 

retardation population and that there are psychiatric 

syndromes which are unique to persons with mental 

retardation. In addition, past studies concerning the 

incidence and prevalence of mental retardation are in 

need of current replication with more recent data to 

study the special sub-population of persons with both 

mental retardation and mental illness. 

The focus of a number of authors was on the 

psychobiological and behavioral mechanisms which 

interrupt and/or interfere with the appropriate 

modulation of central nervous system functions. The 

recent availability of highly sophisticated laboratory 

technology now permits the direct study of human 

behavior which, until recently, could only be 

conjectured. 

Papers on Diagnostic Issues 

Some papers indicated that psychiatric diagnoses 

are relatively easy to make in the individual with 

mild mental retardation, but diagnostic formulation 

becomes much more of a challenge in the person 

with severe mental retardation due to the 

communication and cognitive problems related to 

this level of functioning. A much debated issue was 

the common practice of attributing mental illness to 

mere everyday behavior problems and the concurrent 

problem of diagnosing only from observable 

behaviors alone. The need for appropriate diagnoses 

as a prelude to adequate treatment was emphasized. 

The need to develop practical diagnostic tools and 

to apply such tools in the diagnostic and treatment 

process was also discussed extensively. It was noted 

that very few institutions of higher learning have 

dealt with or focused on this vitally needed training 

area for professionals. 

Papers on Treatment Issues 

Papers dealing with psychoactive drugs gave rise 

to debates among the conference participants 

concerning the issue of the use of 

psychopharmacology versus the use of the principles 

of applied behavioral analysis. While these two 

approaches were often presented as a dichotomy, the 

debate resulted in the consensus that each has a role 

to play in the treatment process, and that one 

modality was not regarded as necessarily more 

restrictive than the other. In addition, it was felt that 

current research efforts tend to focus on singular 

treatment mechanisms such as the use of punishment 

to

7
control aggressive or self-injurious behaviors rather 

than more creative and holistic approaches. 

Papers on Programmatic Issues 

Two basic themes were noted in this area of focus. 

The first was that persons with the joint diagnosis of 

mental retardation and mental illness are the most 

at-risk population to be placed in long-term 

institutional settings, often for life-long custodial 

care. The second theme was the paucity or 

unavailability of programs and services needed to 

meet the needs of this special population within the 

mainstream of community life. The greatest 

challenge as noted by the participants at the 

conference was on the ways to develop programs to 

prevent the institutionalization of this dually 

diagnosed person, and to find methods to bring 

those who are currently institutionalized back in the 

mainstream of family and community living. There 

was also consensus that programs and services for 

persons with mental retardation need to adopt nonrejection policies since it was noted that the dually 

diagnosed are the last to be served and the first to be 

rejected from community- based programs for 

persons with mental retardation. 

Papers on Legal and Legislative Issues 

The emphasis of many of the papers was that 

persons with both mental retardation and mental 

illness have the same rights and privileges as any 

other citizens of the United States. Current laws for 

citizens with mental retardation and developmental 

disabilities apply equally to individuals with joint 

mental retardation and mental illness. It is 

unfortunate that these rights for the latter group are 

often obscured by the confusion of the dual 

diagnosis which results in interagency shuffles that 

leave the person poorly served by both systems 

involved. Additional legal issues focused on the 

misuse of psychoactive drugs and the systematic use 

of restraint and punishment in lieu of active and 

positive intervention strategies. The authors also 

encouraged further systematic analysis of the legal 

status of persons with mental illness and mental 

retardation in whatever settings they receive services 

or assistance. 

Papers on Parental and Family Issues 

It was pointed out that families with members who 

have both mental retardation and mental illness are 

often left without adequate support from either 

system. Often these family members remain 

unserved or under-served or are sent to long-term 

institutional settings with little hope for amelioration 

or return to family and community life. Parents 

having children with these special needs require a 

wide range of in-home and supportive services such 

as parent training and respite care in order to support 

rather than supplant the family. In addition, there is a 

strong need to prevent mental illness in the person 

with mental retardation through intervention 

programs with the person and his/her parents 

through the provision of supportive services as early 

in life as possible. Parent training and respite care 

for families were the two most often cited 

prevention strategies. 

The papers presented at the conference covered a 

diverse spectrum of issues and potential solutions to 

the problems of mental retardation-mental illness. A 

sampling of the major findings and 

recommendations derived from the conference are 

noted under the specific topical headings that were 

discussed at this national meeting. 

Epidemiology 

 Past studies concerning the incidence and 

prevalence of mental retardation are in need of 

updating. Recent data are critically needed to 

further study the special sub-population of mental 

retardation-mental illness. 

 In the current state of major research, the focus is 

clearly on the psychobiological and behavioral 

mechanisms which interrupt and/or interfere with 

the appropriate modulation of central nervous 

system components. 

Diagnosis 

 Diagnostic formulation becomes much more of a 

challenge in the person with more severe mental 

retardation due to the communication and 

cognitive problems related to this level of 

functioning. 

 A much-debated issue is the common practice of 

attributing mental illness to mere behavior 

problems and the concurrent problem of dealing 

with observable behaviors alone, rather than 

underlying mental illness. Conference 

participants underscored the need for appropriate 

diagnosis as a prelude to adequate treatment. 

 There is a need to develop diagnostic processes 

in order to treat the whole person. 

 The need exists to develop practical diagnostic 

tools and to apply such tools in the diagnostic 

and treatment process. 

 Most mental health and mental retardation 

professionals need more specific training and 

experience to

8
appropriately diagnose mental illness in the 

individual with mental retardation. 

 Conference participants emphasized the need to provide training experiences for mental health and 

mental retardation professionals in the diagnosis and 

treatment of mental illness in mentally retarded 

persons. 

Treatment 

 National attention needs to be given to the inappropriate use of psychoactive drugs such as their use as 

a chemical restraint, which is unrelated to any 

psychiatric diagnosis or treatment process. 

Similarly, the misuse of behavioral techniques as a 

systematic tool for restraint and punishment was 

heatedly debated. Others held that entire new 

treatment strategies need to be developed and 

researched to preclude the use of punishment as an 

accepted treatment modality. 

 Current research efforts tend to focus on singular 

treatment mechanisms such as the use of 

punishment to control aggressive or self-injurious 

behaviors rather than more creative and holistic 

approaches. 

 There is a national need to embark on more 

balanced and humanizing treatment approaches. 

 A strong need exists to move away from historic 

assumptions upon which much research has been 

based and move toward the analysis and delineation 

of new treatment approaches based on this target 

population. 

Programs 

 Persons with mental retardation-mental illness are 

the most at-risk population to be placed in long-term 

institutional settings, often for life-long custodial 

care, and there is a paucity or unavailability of 

programs and services needed to meet the needs of 

this complex group of citizens within the 

mainstream of community life. 

 There is a need to define and develop programmatic 

mechanisms to prevent the institutionalization of 

persons with this dual diagnosis, and to find ways to 

bring those tens of thousands who are currently 

institutionalized back into the confluence of family 

and community life. 

 The need exists to develop and support a range of 

community-based alternatives for these citizens. 

 An array of programs and services that States and 

communities need to develop include models of 

acute psychiatric care and treatment, specialized 

educational and vocational programs, community 

residential alternatives such as group homes and a 

number of supportive services such as day hospitals, 

counseling services, and family support programs. 

 There is a national need to have various tertiary 

care centers that specialize in the care and treatment 

of the more acutely mentally ill. 

 Tertiary care centers should be expanded to serve a 

three-part role of treatment, training, and research. 

 Considerable discussion was held at the conference 

on the wisdom of avoiding separate services just 

for this specific target population. 

 There is a need to consider the integration of 

persons with mental retardation and mental illness 

into existing programs for this dually diagnosed 

population. 

 More generic mental health services should be 

made accessible and available for the psychiatric 

needs of the person with mental retardation. 

 Community mental health services should be made 

available to persons with more severe mental 

retardation, i.e., generic mental health services. 

 Mental health centers should engage in acute and 

follow-along care while mental retardation 

programs should focus on daily living activities and 

educational and vocational needs of the persons 

with this dual diagnosis. 

 There are groups of persons who present unique 

service challenges such as those with personality 

disorders with resultant criminal justice system involvement. It was pointed out that even this 

population could be served in the community given 

highly specialized and supervised programs and 

services. 

 Programs and services for the person with both 

diagnoses need to adopt non-rejection policies. It was 

often cited that the person with mental retardationmental illness are the last to be served and the first to 

be rejected from community-based programs for persons with mental retardation. 

 The high number of persons with mental 

retardation-mental illness in State institutions was an 

often-noted national problem. A corollary problem 

dealt with the person being moved back and forth 

from institutions for persons with mental retardation 

to institutions for persons with mental illness in a lifelong cycle of non-treatment experiences. 

9
 The most popular approach advocated was to 

treat the acute psychiatric needs of the mentally 

retarded in psychiatric settings and to meet their 

long-term needs in community programs for the 

mentally retarded person with secondary support 

provided by mental health systems. 

Legal Rights and Legislation 

 The citizen with mental retardation-mental illness 

has the same rights and privileges as any other 

citizen of the United States, e.g., the right to be 

free from harm, the right to minimally adequate 

treatment, the right to live in settings that least 

restrict their freedoms. 

 The "dual diagnosis" often results in interagency 

shuffling that leave the person with mental 

retardation-illness poorly served by both systems. 

 There is the need to apply the same legal, 

legislative, and regulatory standards to the 

individual with both mental retardation and 

mental illness as to the person with mental 

retardation, e.g., the Developmental Disabilities 

Assistance and Bill of Rights Act, and Education 

for All Handicapped Children Act. 

 The most common legal challenges that confront 

the citizen with the dual diagnosis are the lack of 

treatment services for this population and the 

concomitant range of excessively restrictive, and 

at times, punitive intervention strategies resulting 

from the lack of adequate and appropriate 

treatment and programmatic interventions. 

 There exists the misuse of psychoactive 

medications and the systematic use of restraint 

and punishment in lieu of active and positive 

developmental intervention strategies. 

 There is a need to encourage further systematic 

analysis of the legal status of persons with mental 

illness and mental retardation in whatever 

settings they receive services. 

Parents and Family 

 Families with members who have both mental 

retardation and mental illness are often left 

without adequate support from either of the 

major service systems. 

 Parents with sons and daughters having these 

exceptional needs require a wide range of inhome and supportive services such as parent 

training and respite care in order to support rather 

than supplant the family. 

 There is a pressing need to prevent mental 

illness in the person with mental retardation 

through intervention programs with the 

individual with mental retardation and his/her 

parents through the provision of supportive 

services as early in life as possible. Parent 

training and respite care for families were the 

two most cited prevention strategies at the 

conference. 

The above-noted issues, problems and 

suggestions represented the highlights of the papers 

and discussions at the strategies conference on 

mental illness and mental retardation. Specific 

recommendations are summarized as follows: 

Recommendations 

The conference participants and authors of the 

papers developed a number of recommendations 

related to new and improved services, more 

relevant and in-depth training, and more innovative 

basic and applied research. Conference participants 

concurred that past gains need to be developed if 

this target population is to take its rightful place in 

the life of the family and the community. The 

following recommendations were in the area called 

innovative services: 

 To create regional acute care treatment centers 

for the diagnosis and treatment of complex cases 

of mental illness in persons with mental 

retardation. These centers should also have an 

allied research and training emphasis. 

 To encourage University Affiliated Facilities in 

general to assume the responsibility for model 

program development through the establishment 

or the support of services such as acute care, 

outpatient mental health clinics, day hospitals, 

prevocational and vocational services, parent 

training, medication and monitoring, and 

diagnostic and treatment clarification. 

 To develop easy-to-administer assessment 

instruments that can be used by both mental 

health and mental retardation professionals, 

especially in diagnostic areas such as 

schizophrenia, affective disorders and 

personality disorders. 

The area of research stimulated the following 

recommendations needing immediate attention: 

 To conduct research relative to similarities and 

differences of persons with mental retardationmental illness as compared to populations 

without the mental retardation component. 

 To create a national data bank on research and 

programmatic mechanisms so that state-of-theart information would be readily available. 

10
 To conduct basic research related to 

neurochemistry, neuro-endocrinology, and 

neurophysiology in order to further enhance 

scientific understanding and to develop new 

intervention strategies. 

 To establish a separate governmental review 

mechanism for research projects focusing on 

the problems of mental illness in persons 

with mental retardation. 

The area of training was cited often in the 

conference as a major national need and it was 

noted that with few exceptions, mental 

retardation and mental health professionals are 

unprepared to meet the acute and chronic needs 

of this special population. It was 

recommended that institutions of higher 

education focus on the following: 

 To increase competencies in the diagnosis 

and treatment of mental illness in the 

individual with mental retardation through 

continuing education experiences as well as 

the use of more formal training through 

fellowships, residencies, and internships. 

 To integrate the specialized area of dual 

diagnosis in all interdisciplinary training 

programs in professional schools. 

 To develop curricula and media packages for 

training purposes in this specialized area. 

To summarize, the purpose of this conference 

was to convene a complete spectrum of 

disciplines and points-of-view that are 

currently prevalent in the United States relative 

to dual diagnosis. The discussions and recommendations that were developed from the 

deliberations should provide the needed 

impetus to focus attention and action to this 

often ignored problem. 

A hardback book was published providing 

the full text of papers presented at the PCMR 

National Strategies Conference. The title and 

source is as follows: Jack A. Stark, et al, 

Mental Retardation and Mental Health 

Classification, Diagnosis, Treatment, Services. 

Springer-Vertag, New York (1987). 

11 
Highlights From the National Conference on 

State Planning for the Prevention of 

Mental Retardation and Related 

Developmental Disabilities 

Introduction 

In keeping with its executive mandate to "evaluate 

the status of the national effort to combat mental 

retardation" and to "develop and disseminate such 

information as will tend to reduce the incidence of 

mental retardation and ameliorate its effects," the 

President's Committee on Mental Retardation 

(PCMR) sponsored a National Conference on State 

Planning for the Prevention of Mental Retardation 

and Related Developmental Disabilities. The 

purpose of the conference was to stimulate commitment to a national effort to prevent mental 

retardation and related developmental disabilities. 

This meeting took place February 11-12, 1987, in 

Washington, D.C. 

Background 

The PCMR has as one of its basic goals to reduce 

the incidence of mental retardation in the nation. The 

conference was designed to take stock of the current 

status of prevention of mental retardation in the 

United States and also to learn of methods and 

strategies to plan for the future in the area of 

prevention. The interest level for this important 

conference was high and a record number of public 

and private sector agencies demonstrated a strong 

commitment to and support of this initiative. Twelve 

national mental retardation constituency 

organizations joined the PCMR in co-sponsoring the 

conference. Participants included prevention planners, service providers, advocacy group 

representatives, educators, health officials, Federal 

and State government personnel and legislators. 

Paper Presentations 

"As individuals involved in the field of prevention 

of diseases and promoting health, we must strive to 

work in every possible relationship together from the 

local level to the national scene in order to be most 

effective in delivering the public message to our 

citizens. A long chain must be formed to meet this 

challenge, and each one of you is a vital and very 

important link in that chain. The success of the 

strength of that chain will be limited by the wellknown adage—it is only as strong as its weakest 

link." This was spoken by Robert E. Windom, M.D., 

Assistant Secretary of Health, U. S. Department of 

Health and Human Services, in setting the tone and 

objectives for this important conference on 

prevention. 

Duane Alexander, M.D., Director of the National 

Institute of Child Health and Human Development, 

opened his presentation with the following quote, 

"Nationwide thinking, nationwide planning, and 

nationwide action are the three great essentials to 

prevent nationwide crises for future generations." Dr. 

Alexander noted that no one knew more about 

nationwide crises than President Franklin D. 

Roosevelt. He had spoken these words more than a 

half a century ago, but these words apply to the 

participants of this conference and to the activities of 

the President's Committee on Mental Retardation. Dr. 

Alexander stressed that governments at all levels, 

private foundations, philantrophies, and our citizens 

must be convinced that efforts directed toward 

prevention are cheaper, more effective, and more humanitarian than efforts solely directed toward 

treatment or care. No one can do it alone, but there is 

a cooperative role for each of us and at every level 

from government to the private citizen. 

The summaries of the papers presented for 

discussion at the conference are focused in three 

general areas. The papers include biomedical 

approaches, social-cultural approaches, and a view of 

State/Territorial findings. 

Biomedical Approaches 

In his paper entitled, "Planning for Prevention of 

Mental Retardation," Duane Alexander, M.D., 

described a variety of biomedical approaches to be 

designed to prevent mental retardation and other 

developmental disabilities. He noted an early success 

in prevention coming as a result of the 

Phenylketonuria (PKU) Screening Test in the early 

1960's. In the past two decades, newborn screening 

and diet treatment has been instituted in every State 

with Federal assistance. He noted, however, that we 

are faced with a new problem of

12
maternal PKU. Girls with PKU treated with diet in 

infancy now reach reproductive age with normal intelligence. Previously, these women were profoundly retarded and did not reproduce. However, they are now 

having children, and we are discovering that the high 

phenylalanine level of these women in pregnancy is 

toxic to the developing fetus. Most of their children are 

abnormal at birth, with microcephaly, mental retardation, and/or congenital heart disease. If each woman 

with PKU were to have two children, in one generation 

we would have the same number of persons with 

mental retardation as a consequence of PKU as we had 

before screening began. Obviously additional research 

is needed to prevent and/or treat this aspect of PKU, and 

the National Institute of Child Health and Human 

Development (NICHD) has launched a major PKU 

international collaborative study to assess whether reinstitution of a low phenylalanine diet, either preconception or in early pregnancy, can prevent fetal 

complications. This is one of the broadest prevention 

research efforts ever mounted, involving all 50 states 

and all provinces of Canada, trying to identify PKU 

women of childbearing age and younger, provide 

counseling on their pregnancy risks, and enroll them in 

the study. Professions in the mental retardation field can 

help by counseling their patients with PKU and 

referring them to the study. 

Another area where early prevention has paid off is 

in curtailing congenital rubella. The rubella epidemic of 

1965-1966 produced 25,000 cases of the rubella syndrome which caused mental retardation, deafness, and 

congenital heart disease. The rubella vaccine developed 

in 1969 by the Public Health Service at the National 

Institutes of Health and the Food and Drug Administration has effected a marked decline in both rubella and 

the congenital rubella syndrome. Today, over 95% of 

children are immunized at school age with assistance 

from the Federal immunization program. In 1985, the 

Centers for Disease Control reported only two cases of 

congenital rubella in the entire United States. 

Congenital hypothyroidism (cretinism) is another 

disorder that is on the way to being eliminated as a 

cause of mental retardation. This condition is now 

readily treated to prevent mental retardation from 

developing, but the majority of cases are not diagnosed 

in time. A screening test, using the same blood spot as 

in PKU screening, was developed with NICHD support 

in the late 1970's and tested in the early 1980's. 

Currently, screening newborns for congenital 

hypothyroidism is done in all States similar to PKU 

screening. Since this condition is four times as frequent 

as PKU, at least 1,000 cases per year of mental 

retardation are prevented. 

Erythroblastosis fetalis (Rh hemolytic disease) is another disorder that causes mental retardation. This 

condition develops as a consequence of an Rh + baby in 

an Rh - mother. The mother is sensitized to the baby's 

Rh + cells at delivery. In a future pregnancy, her Rh 

antibodies destroy her baby's red blood cells, causing 

anemia, jaundice and, in some cases, cerebral palsy, 

deafness, mental retardation, or death. In the late 1960's, 

researchers developed Rhogam (antibody to fetal Rh + 

cells) that destroys them in the mother's blood before 

they sensitize her. A single injection given to an Rh - 

mother at delivery will prevent sensitization and thus 

avoid complications in future pregnancies. The use of 

Rhogam prevents several thousand cases of mental 

retardation per year. 

Amniocentesis used for prenatal diagnosis of genetic 

disease is, in part, a way to prevent mental retardation. 

This diagnostic technique, developed in 1968, has since 

become widely available. In combination with a shift 

away from older maternal age at childbearing and 

public education, amniocentesis has resulted in a 25% 

decrease in incidence of Down Syndrome and a 

comparable decrease in other cytogenetic causes of 

mental retardation. 

The need for prevention research of a biomedical 

basis continues and the use of new tools of genetics, 

neurosciences and molecular biology offer increased 

hope for the prevention of mental retardation and other 

developmental disabilities. 

Social-Cultural Approaches 

In a paper delivered to the conferees, Ms. Arlene 

Mayo indicated that mental retardation and other developmental disabilities do not discriminate on the basis of 

race, ethnic group or socioeconomic class and that all 

segments of the population may be at risk. Studies, 

however, indicate that the socially disadvantaged have 

historically been the victims of an over representation of 

mental retardation and related disabilities. She went on 

to note that the Black population showed an even larger 

disparity in viewing this problem. Factors that tended to 

influence these differences included low birthweight, 

access to services, poverty and other socioeconomic 

indicators. 

Dr. Alfred A. Baumeister corroborated the above 

issues in his paper entitled, "Effective Planning Strategies to Prevent Mental Retardation Among Socially 

Disadvantaged Populations." He stated that it is well 

recognized that the environment in which a child grows 

and develops exerts a powerful force upon the intellectual, emotional, and physical development of that individual. Poverty and low socioeconomic status have 

been found to be a major contributing factor in higher 

incidences of many disabilities including mild mental 

retardation. He noted that research studies have shown 

that social, economic and cultural factors are major 

causes in prematurity and intrauterine growth retardation, and that these conditions in turn; increase the risk 

of perinatal problems and neurological disability. These 

adverse conditions are linked with postnatal dysfunction

13
including learning problems, behavioral problems, and 

lower intellectual functioning as measured by the I.Q. 

The National Institutes of Health publication entitled, "Prenatal and Perinatal Factors Associated with 

Brain Disorders" (1981), listed three major ways in 

which these social, cultural, and economic factors contribute to brain dysfunction. These included: (1) By 

virtue of life circumstances, the child before or after 

birth may be placed in harm's way and thus have an 

increased exposure to high risk conditions which in 

turn lead with greater frequency to brain disorders; (2) 

A lack of timely and effective rehabilitative services 

may maximize central nervous system injury and 

compromise learning during a critical developmental 

period; and (3) In an unfavorable environment a child 

with brain injury may also develop in a maladaptive 

manner. Because of this double jeopardy, a child may 

perform worse than expected due to either brain injury 

or social, cultural and economic factors alone. 

Dr. Baumeister pointed out that to understand the 

relationship between poverty and later morbidity, it is 

important to view poverty not as an isolated condition, 

but rather as an ongoing process that interacts at all 

levels with an individual's ability to function within a 

given environment. The effects of poverty begin at 

conception. Low birthweight is a major factor in infant 

mortality with these babies being 40 times more likely 

to die in the first four weeks of life than a normal 

weight infant. If they do survive, the low birthweight 

(LBW) infant is three times more likely to have a 

neurodevelopmental handicap, and this risk increases 

as birthweight decreases. In addition, infant mortality 

rates seem to have recently increased in the United 

States among some ethnic or racial groups. The U.S. 

currently lags behind 16 other nations with respect to 

infant mortality. 

A review of the data from this paper shows that a 

clear pattern emerges as to those most likely to give 

birth to a low birthweight baby. Demographically, 

those at highest risk are under 17 and over 34 years of 

age, Black, low socioeconomic status, unmarried, and 

have a low level of education. Behavioral and 

environmental risks include smoking, poor nutritional 

status, substance abuse, and toxic exposures including 

occupational hazards. When you connect these 

demographic, behavioral and health variables together 

there is a strong correlation between them and poverty. 

In 1975, Robert Haggerty and his associates introduced a phenomenon they termed the "new 

morbidity." The conditions associated with the "new 

morbidity" at that time were described as behavioral 

and school problems among children and adolescents. 

Also included were environmental risks with personal 

behaviors such as drug and alcohol abuse, and 

accidents. The model encompasses a wide array of 

psychological problems including violent behaviors, 

suicide, mild mental retardation, adolescent pregnancy, 

psychiatric disorders, and chronic health problems, 

along with school difficulties such as emotional 

disturbance and learning disabilities. While none of 

these constitute new problems, what is more alarming 

about the "new morbidity" is the ever increasing 

prevalence of these conditions among children and 

adolescents throughout our society. 

While the "new morbidity" affects children and adolescents from all socioeconomic levels, children who 

live in poverty are one and a half to two times more 

likely than non-poor children to suffer from disabilities. 

This is supported by government figures showing that 

for those individuals under 18 years of age experiencing 

limitations in major activities more than twice as many 

are from families earning under $10,000 per year when 

compared with those from families earning $10,000 or 

more per year. The same holds true for five through 17 

year old persons who are rated in fair or poor health, 

with a sevenfold increase (in disabilities) for those 

individuals in the lower income group when compared 

with the higher income group. 

In summary, the matter of serving ethnic/minority 

populations who are considered socially disadvantaged 

requires positive actions in implementing the many 

common-sense recommendations that have been generated from many studies. Providing culturally relevant 

materials, recruiting and training bilingual/bicultural 

service providers, and the development of culturally 

responsive service models must be considered in 

realistic prevention efforts. There are many models of 

prevention programs that have demonstrated that early 

intervention works. However, reaching the population 

at risk, namely the socially disadvantaged, requires one 

to consider their own values as they relate to the known 

barriers to service delivery and to draw from their own 

creativity to the service meaningful, available and 

obtainable. While we can expect the many scientific 

and technical advances including new tests, new drugs 

and new genetic engineering breakthroughs in the 

future, the basic solutions and interventions needed are 

not of a technological nature, but more of 

social/political orientation. 

State and Territorial Activities 

The Conference participants discussed and 

exchanged numerous actions and programs taking place 

in the various States. For the purposes of this report, 

some excerpts from around the nation are described in 

this section. 

The California Experience 

In California, for example, over 450,000 people with 

developmental disabilities require some kind of specialized program. In fiscal year 1986-1987, the Departments

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of Education and Developmental Services together 

will spend in excess of $2.4 billion to provide these 

services. The following are some of the factors that 

illustrate the impact that birth defects and 

developmental disabilities have on all of us: 

In the coming year, 25,000 infants, because of 

prematurity or birth defects, will be admitted to 

Neonatal Intensive Care Units at a cost of over six 

hundred million dollars. A State-wide prevention 

program of education, counseling, and expanded 

perinatal care can reduce this cost by one-third. 

Almost 9,000 Neonatal Intensive Care Units infants 

will be rehospitalized during their first year at a cost of 

fifty million dollars. Twenty to fifty percent of these 

rehospitalizations will result from child abuse and neglect. One-half of these cases can be prevented by 

providing high-risk infant follow-up programs, including home services and parental counseling. 

A document entitled, "Prevention 1990: California's 

Future:" presents, for the first time in California, a 

coordinated State-wide plan to address these problems 

and to reduce the incidence and severity of birth 

defects and developmental disabilities. It was noted 

that the experiences gained from prevention efforts in 

California, the United States, and from other countries 

documented that the costs for prevention efforts are 

returned or "paid back" many times over. These 

benefits are associated with reduced human suffering, 

increased individual potential, and the substantial 

savings in treatment and long-term care services. 

The California Task Force and the Office of 

Prevention identified eight essential services which 

must be addressed if the incidence of developmental 

disabilities is to be reduced, and these include the 

following: 

 Perinatal Care. 

 Early Intervention Services. 

 Genetic Services. 

 Environmental Hazards. 

 Prevention Education. 

 Public and Professional Education. 

 Management Information Systems. 

 Administration. (This is to insure that the 

recommendations contained in the plan are carried 

out in a timely and cost-efficient manner.) 

The California Plan described briefly, identified 

prevention goals and objectives which constituted a 

coordinated "blueprint" for action to be implemented 

within the next five years. 

The Ohio Prevention Project 

In 1980, the Ohio Developmental Disabilities 

Planning Council, an arm of the Ohio Mental 

Retardation/Developmental Disabilities (MR/DD) 

Department, undertook to do something tangible in 

the way of prevention. It incorporated the concept of 

prevention into its State Plan, with the following 

goals: 1) to lower the incidence of developmental 

disabilities through better utilization of existing 

services and knowledge; and 2) to ameliorate the 

effects of developmental disabilities by ensuring that 

all children in Ohio have access to early identification 

and appropriate intervention services as needed. 

In order to effectively address these goals, the 

importance of training for professionals, general 

consumers, and teenagers to establish a 

comprehensive prevention strategy was recognized. 

From these beginnings, the State-wide DD 

prevention continuing education project was 

conceptualized in October 1983. Funded by the Ohio 

Department of MR/DD, this program is complementary to the prevention goals and objectives 

outlined in the Ohio DD Planning Council's State 

Plan and is expected to continue through December 

1989. The Ohio Prevention Continuing Education 

Project has developed an interagency training model 

with the potential for out-of-state replication. It 

should be noted that the model exemplifies 

interagency collaboration and builds upon the 

effective use of existing resources. 

The major collaborative partners in the project are 

Ohio's two University Affiliated Facilities (UAF), the 

Ohio Area Health Education Centers (AHEC), and 

the Ohio Cooperative Extension Service (OCES). In 

addition, secondary schools have been incorporated 

as a vital component of Ohio's State-wide DD 

prevention training network. 

Extensive project materials were developed and 

field-tested for use with physicians and nurses, allied 

health professionals, general consumers, and, of 

course, teenagers. In general, the materials addressed 

prevention strategies that are associated with four 

major time periods and include 1) Preconceptual, 2) 

Prenatal, 3) Birth, and 4) Postnatal. A broad array of 

training models and other materials have been 

developed for various audiences and provide a wide 

variety of prevention information. 

In summarizing the Ohio experience, it was 

stressed that each State must identify existing 

resources that provide professional and consumer 

education and creatively unite and motivate these 

resources to establish a comprehensive, collaborative 

venture in training and awareness in prevention of 

developmental disabilities. The UAF's are in an 

excellent position to serve as the catalyst for this kind 

of State-wide DD prevention training effort. 

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The New Jersey Public-Private Initiative 

In 1984, with the support of key government 

officials, at the request of the Director of the 

Division of Developmental Disabilities, the 

Commissioner of Human Services convinced the 

Governor of New Jersey to adopt the prevention of 

mental retardation as an important new policy area 

by emphasizing both the cost-effectiveness and 

humaneness of this approach. The Governor took 

the occasion of his annual message to the New 

Jersey State Legislature in January of 1984 to 

announce the creation of an Advisory Council on 

Prevention of Mental Retardation, with the mission 

of developing a Statewide plan for prevention. 

Support for the policy was enhanced by the 

involvement of the State's First Lady who played a 

significant role in focusing attention on the problem 

of mental retardation and the need for improved 

prevention strategies. 

The Governor's Executive Order which 

established the Council, set out the task of designing 

services and mobilizing support for prevention in six 

points. In order to design services, the Council was 

directed to do the following: 

To study the prevention of mental retardation and 

develop a comprehensive plan. 

To evaluate prevention activities in New Jersey and 

in other States. 

To develop mechanisms to facilitate detection of the 

causes of mental retardation. 

In order to mobilize support for prevention, the 

Council was directed: 

To mobilize citizens and community agencies in a 

strong effort for prevention. 

To foster cooperative working relationships among 

the relevant agencies. 

To define and convey to the public information 

about the prevention of mental retardation. 

The prevention Council was composed of a truly 

representative body from State government, social 

service organizations, business, and industry. These 

members were linked with parents of citizens with 

mental retardation, making it possible for the public 

and private sectors to plan together effectively. 

The past few years have generated several 

prevention projects of note, such as the following: 

A prevention program resource manual presented in 

a format appropriate for students and adults in the

community. 

An emphasis on prevention in curricular and professional publications in medical schools and 

professional associations. 

A project to provide to every health or family life 

education teacher in the State a prevention kit which 

included information on the causes of 

developmental disabilities such as use of drugs, 

alcohol, tobacco, poor nutrition, lack of seat belt use, 

lead poisoning, and adolescent pregnancy, and 

materials that can be used with students to create an 

awareness that can have significant impact on 

reducing the incidence of mental retardation and 

related development disabilities. Along with the kits, 

inservice training for the teachers will be provided. 

These are just a few of the ways that the State of 

New Jersey has approached the challenge of 

prevention activities which has sparked enthusiasm 

from the Governor's office to the local community. 

While we are limited in the size of this report, 

other States that described their programs at the 

Conference with written reports included Indiana, 

New York, North Carolina, and Virginia. 

Recommendations 

In February 1987, the President's Committee on 

Mental Retardation (PCMR), along with cosponsors from other Federal agencies, private 

advocacy, and professional organizations convened 

a major national conference to stimulate and 

facilitate planning for the prevention of mental 

retardation by States and Territories. This report 

emphasized the broad-based approach that is needed 

to deal with the issue of prevention. The deliberations focused on the biomedical and sociocultural approaches to prevention. In addition, 

papers were delivered by representatives of many 

States where innovative projects are underway. 

Major recommendations are summarized as follows: 

 Public awareness—The media and its messages 

during pregnancy, early childhood, abuse, and the 

like, greatly influence lifestyles of the socially 

disadvantaged. Reaching out to pockets of socially 

disadvantaged, they often promote messages that 

encourage unfavorable lifestyles during 

pregnancy. The media must be encouraged to be 

more responsible as they impact on this 

population. 

 Outreach—It is a sad fact that many socially 

disadvantaged persons tend to be unserved due to 

a number of factors that impede their ability to 

access services that are available. Approaches 

need to be developed to correct this problem.

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 Holistic Approach—We must consider the 

needs of the entire family and the identified 

person as a member of the system; only then 

can we prevent reoccurrence. The family 

system has become fragmented, however, 

studies indicate that they still influence the 

approach to service systems. 

 Training Opportunities—More opportunities 

for the minority population must be available so 

that they can be provided services within their 

own community. The recruitment of minority 

service providers to the field of developmental 

disabilities and mental retardation is critical 

when the numbers of socially disadvantaged 

within the population is considered. The issue 

may not be merely the need to match 

ethnicities, i.e., black worker, black client, but 

to have workers who approach clients with 

genuine respect and an understanding and 

acceptance of the client's culturally relevant 

needs. 

 Making Prevention a Priority—It has been 

clearly documented that 80% of all 

developmental disabilities and mental 

retardation could have been prevented. 

Therefore, consideration must be given to the 

priorities of early prenatal care, optimum 

quality of care, early intervention program, to 

name a few. 

 Legislation—Laws are needed to ensure 

access to prenatal care for all women, with 

special emphasis on reaching the medically 

and/or socially disadvantaged high-risk mothers 

for services. Special attention must be given to 

pregnant, developmentally disabled women 

who opt to become parents. 

 Prevention Research—The need for 

prevention research of a biomedical basis 

continues, and the use of the new tools of 

technology in the area of genetics, the 

neurosciences, and molecular biology should 

press forward in the realm of prevention. 

 In order to reach the Presidential goal to reduce 

the incidence of mental retardation by 50% by 

the year 2000 A.D., the resources of the 

governmental and private sectors must be 

mobilized. This will require total coordination 

of efforts at every level of government in 

concert with professional and advocacy groups.

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