THE SECRETARY OF HEALTH AND HUMAN SERIVCES 

WASHINGTON, D.C. 20201 

The President 

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

I am pleased to transmit to you the report of the President’s Committee on Mental 

Retardation entitled Citizens with Mental Retardation: Equality Under the Law. The report 

focuses on many important aspects of the law and mental retardation. It addresses recent 

and current legal issues and needs, including the role of local and State government, least 

restrictive environment, self-advocacy, right to survival, and family and community living. 

The content of this report includes the contribution of participants, who were invited 

experts in the field of law and mental retardation, attending the Second National Conference 

on Legal Rights for Mentally Retarded Citizens held in March 1985; and selected 

resolutions passed by the membership of the President’s Committee on Mental Retardation, 

relating to the subject of law and mental retardation. 

The relationship between law and citizens with mental retardation was addressed by the 

President’s Panel on Mental Retardation over twenty years ago. The First National 

Conference on Legal Rights for Mentally Retarded Citizens was held twelve years ago. The 

present report is an update on the subject of law and mental retardation, spanning the twelve 

years between the two conferences. 

It is my hope the information in this report proves useful as we as a nation work to 

develop strategies for the attainment of full citizenship by citizens with mental retardation 

and developmental disabilities. 

Sincerely, 

Otis R. Bowen, M.D. 

Secretary 
Report to the President 

Citizens with Mental Retardation: 

Equality Under the Law 

President's Committee on Mental Retardation 

Washington, D.C. 20201 
Preface 

For over 20 years, beginning with the President's Panel on Mental Retardation, and 

continuing with the President's Committee on Mental Retardation (PCMR), the 

Committee has monitored the relationship between citizens with mental retardation and 

the law with great interest. The Committee's diligence in monitoring this relationship is 

built upon an acute awareness that although citizens with mental retardation have the 

basic rights of Life, Liberty, and the Pursuit of Happiness, American society has 

frequently denied mentally retarded citizens full access to these rights. The intent of this 

Special Report to the President is that it will serve to strengthen the awareness of public 

policy makers and the general public regarding this dichotomy as well as to the need to 

ensure continued availability of Federally protected rights for citizens with mental 

retardation. 

The information and recommendations contained in this Report to the President are 

the result of the Second National Conference on Citizens with Mental Retardation and 

the Law held March 14-16, 1985. The Conference was sponsored by the President's 

Committee on Mental Retardation, the Office of Special Education and Rehabilitative 

Services of the U.S. Department of Education, the Resident Home for the Mentally 

Retarded of Hamilton County, Inc., Ohio, and the City University of New York Law 

School at Queens College. The focus of the Conference was to assess the 

accomplishments and the problems in the legal rights area since PCMR sponsored the 

First National Conference in 1973, to consider current trends, to define a base for the 

efforts in this area and to develop a scenario through the end of the century. 

The Report includes selected resolutions passed by the President's Committee on 

Mental Retardation which relate to the subject of the Report. These are the only items in 

the Report which represent the official position of the Committee. 

Albert L. Anderson, D.D.S. 

Vice Chairperson 

President's Committee 

on Mental Retardation 
President's Committee on 

Mental Retardation 

The Honorable Otis R. Bowen, M.D., 

Chairperson Secretary, U.S. Department of Health 

and Human Services Albert L. Anderson, D.D.S., 

Vice Chairperson 

Citizen Members 

Albert L. Anderson, D.D.S. Richard E. Blanton, Ph.D. 1 

James Bopp, Jr., Esq. 2, 3 Lee A. Christoferson, M.D. 

Dorothy Corbin Clark, R.N. 2 Lois Eargle 

Thomas J. Farrell 2 Vincent C. Gray 

Matthew J. Guglielmo Madeline B. Harwood 

Elsie D. Helsel, Ph.D. 2 William K. Hummer, M.D. 

Roger Stanley Johnson, M.D. 2 Lawrence A. Kane, Jr., Esq. 1, 4 

Richard J. Kogan James L. Kuebelbeck 1 

Jerry P. Larson, M.A., R.S.W. D. Beth Macy 

Timothy J. O'Brien 1 Fred J. Rose 

Ung Yun Ryo, M.D., Ph.D. Anne C. Seggerman 

Marguerite T. Shine Lila Thompson 1 

Virginia J. Thornburgh 2 Ruth Warson, R.N. 2

1 - Term ended June, 1985 

2 - Member, Full Citizenship Subcommittee 

3 - Chairperson, Full Citizenship Subcommittee 

4 - Chairperson, Full Citizenship Subcommittee through June, 1985 

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 

Staff 

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

Jim F. Young, Deputy Executive Director 

Nancy O. Borders George N. Bouthilet, Ph.D.* 

Judy Moore Ashot Mnatzakanian 

Essie Norkin Laverdia T. Roach 

Rosa Singletary Bena Smith 

David J. Touch Terry A. Visek

Valerie Wood 

*Coordinator, Full Citizenship Subcommittee 

ii 
Table of Contents 

Preface ...................................................................................................................................................... i

I. Introduction ...................................................................................................................... 1

Role of the President's Committee on Mental Retardation in the Legal Rights Area and in the 

Development of this Report 

II. The Population of Citizens With Mental Retardation ................................................................ 3 

Identification and Description of the Population of Citizens with Mental Retardation 

III. Citizens with Mental Retardation as Part of the Community .............................................. 5 

The Value of Community Integration of Citizens with Mental Retardation to the Individual, to the 

Family and to the Society 

IV. New Federalism ........................................................................................... 7

Relationship of State Law and Courts to the Federal Role as a Source of Rights of Citizens with 

Mental Retardation 

V. Least Restrictive Environment ................................................................................. 10

Application of the Concept of Least Restrictive Environment to Provide Services and Rights for 

Citizens with Mental Retardation 

VI. Self Advocacy ............................................................................... 12 

Self-Advocacy as a Practice by Citizens with Mental Retardation to Enhance Their Role in 

Determining Goals and Strategies and in Choosing Among Options 

VII. Right of Survival .................................................................................. 14

Decisions on the Kind of Life and on Life Itself Cannot Be Based Solely on a Diagnosis of Mental 

Retardation nor on Projections about the Expected Quality of That Life 

VIII. Future Strategies ............................................................................. 16

Guidelines for Individuals in the Public and Private Sectors Who are Concerned that Citizens 

with Mental Retardation Achieve Their Rights 

IX. Conclusion .................................................................................................................. 17

Creative Approaches to Ensuring Citizens with Mental Retardation Equality Under the Law 

will Need Continued Development 

iii 
I. Introduction 

Role of the President's Committee on Mental 

Retardation in the Legal Rights Area and in the 

Development of this Report 

The President's Committee on Mental Retardation 

has an unique responsibility. Its charge is to focus on 

a single area of national concern—mental 

retardation— and to make its recommendations to 

the President of the United States, and to the 

Secretary of the Department of Health and Human 

Services. Our society's view and treatment of persons 

with mental retardation continually changes. These 

changes are reflected in policy shifts among different 

agencies at the Federal, State and local levels. 

The relationship of citizens with mental retardation 

and the law initially was addressed by the President's 

Panel on Mental Retardation over twenty years ago. 

Issues related to the rights of this portion of our 

population were brought to the attention of families, 

care givers, policy makers, professionals and the 

general public. In the intervening period, the 

President's Committee on Mental Retardation has 

continued to focus attention on the rights of 

individuals with mental retardation. 

We do not "give people their rights". 

Individuals either have rights or they do not. The 

unfortunate thing that we often do with rights is 

to take them away from certain groups or classes 

of citizens. Rooted in the Constitution and in the 

Declaration of Independence are the rights of Life, 

Liberty, and the Pursuit of Happiness. We must 

remain alert to ensure that persons with mental 

retardation are able to enjoy their full rights of 

citizenship. 

In terms of their right to Life, protections must be 

in place to ensure that decisions will not be made to 

deprive individuals of life because of diagnoses of 

mental retardation. President Reagan's clear support 

of this position is reflected in his statements on the 

"Baby Doe" issues. Further, we must be alert to prevent efforts to devalue the life of persons with mental 

retardation. The strength of a society is reflected in 

its willingness to safeguard the rights of all of its 

citizens. 

As a nation, we have fought to protect our right to 

Liberty. Full application of this value requires an 

end to the presumption that there is a need for 

segregation of persons with mental retardation from 

the rest of society. Historically, application of this 

presumption has resulted in the construction of large, 

usually isolated residential facilities; in the 

segregation of students in schools; in the denial of 

access to generic service agencies; and in efforts to 

limit full and equal access to appropriate living 

arrangements and employment within the 

community. 

Parents' groups have been a major force in advocating the Liberty rights of citizens with mental 

retardation. The efforts of parents' groups at the 

national, state and local levels have resulted in 

educational mainstreaming, establishing and 

maintaining community living settings, legislation 

and court rulings limiting discrimination in 

employment, and in the growth of a strong protection 

and advocacy network. Group efforts have 

significantly advanced the Liberty rights of citizens 

with mental retardation. 

Individuals with mental retardation have a basic 

right to the Pursuit of Happiness. This right can be 

exercised best when the individual is functioning at 

an optimal level of independence and can choose 

from among the options generally available to 

citizens of this society. To allow optimal choice, a 

full range of services should be available to each 

individual with mental retardation and his or her 

family. These services include prevention, early 

intervention, nutrition, health care, education, 

vocational training and employment, recreation, 

social services, housing, and transportation. 

Though these services may seem costly, 

investments in them are appropriate and fiscally 

responsible when considered against the benefits of 

reduced need for life-long services, reduced drain on 

families and increased opportunities for persons with 

mental retardation. Providing this support base to the 

Pursuit of Happiness allows citizens with mental 

retardation to move from being tax consumers to the 

socially integrated role of being working, and tax 

contributing Americans. 

The President's Committee on Mental Retardation 

has maintained a national spotlight on the specific 

needs of this population. The Committee has disseminated information on the most recent scientific 

advances, on model programs and on changing 

policy and service patterns. The Committee has 

sponsored studies to consider what may be expected 

in the future for our society overall, and for the 

individuals with mental retardation within that 

changing society. A hallmark of the Committee's 

efforts has been in the legal rights area.

1 
In 1973, PCMR convened the First National 

Conference on the Legal Rights of Mentally 

Retarded Citizens at Ohio State University in 

Columbus, Ohio. The purpose of the 1973 

Conference was to review the historical 

development of legal and civil rights in this area, to 

consider both the recent progress and the practical 

and conceptual obstacles to full realization of these 

rights, and to set an agenda for the coming decade. 

The Conference brought together hundreds of 

parents, decision makers, legislators, lawyers, advocates, university faculty, mental retardation professionals and students. As the first meeting of its kind, 

it represented a milestone in the history of people 

with mental retardation in the United States. 

The Conference accomplished a number of 

major achievements. First, it provided the stimulus 

for lawyers and advocates to recognize that mental 

retardation is an appropriate and exciting area for 

legal study and activities. Second, it created a 

heightened awareness for mental retardation 

professionals of the potential within the legal 

system for securing needed and legally mandated 

services. Third, it served to identify lawyers active 

in the mental retardation field. Finally, publication 

of the text, The Mentally Retarded Citizen and the Law, 

based upon Conference proceedings, provided the 

first extensive exploration of the personal, civil and 

community rights of citizens with mental 

retardation. 

Twelve years later, in 1985, a small group of 

legal scholars, educators, parents, mental 

retardation professionals and advocates met at the 

Grailville Conference Center in Loveland, Ohio, for 

the Second National Conference on the Legal 

Rights of Mentally Retarded Citizens. The Resident 

Home for the Mentally Retarded of Hamilton 

County hosted the Grailville Conference and cosponsored it with the President's Committee on 

Mental Retardation, the Office of Special Education 

and Rehabilitative Services of the U.S. Department 

of Education, and the City University of New York 

Law School at Queens College. 

The Second Conference was a marked contrast in 

size to its predecessor. Participants at Grailville 

were selected for their expertise and active 

involvement as outstanding representatives in the 

legal rights area of the mental retardation field. A 

major difference in 1985 was the great increase in 

the size of the pool of knowledgeable, talented and 

experienced individuals from which participants 

could be selected. The 

Grailville Conference was designed as a working 

conference so that every participant would play an 

active role in the Conference sessions, presenting 

either papers or formal reactions, facilitating 

sessions or participating in the group discussions. 

Grailville's seclusion and retreat setting provided an 

atmosphere conductive to fruitful dialogue. 

The First Conference focused considerable 

attention on developing recognition, through legal 

avenues, that citizens with mental retardation share 

the same basic rights as other citizens. Educational 

exclusion and deinstitutionalization were major 

topics. At Grailville, these and related issues were 

viewed as historical phenomena. Superseding them 

were questions related to the quality of life; the 

provision of life sustaining services; self 

determination, the type, setting and value of 

educational and work-related services, and the 

community integration of those citizens with mental 

retardation who could function in a variety of small, 

appropriate, family sized residences. New issues, 

not foreseen in 1973, were the focus of much 

intense discussion. Of particular importance were 

the Baby Doe cases and self-advocacy by persons 

with mental retardation. 

This report draws on the positions and actions 

taken by the President's Committee on Mental. 

Retardation from 1982 to 1985 which are related to 

major national concerns about the legal rights of 

citizens with mental retardation. Further, relying on 

the 1985 Conference, the report integrates the 

Conference's presentations, reactions, and 

discussions of these issues. It also presents 

resolutions by the President's Committee on Mental 

Retardation, passed between 1982 and 1985, that 

related specifically to the legal rights area. These 

issues are on the cutting edge of efforts to ensure 

the rights of individuals with mental retardation 

while meeting the needs presented by these persons, 

their families and other advocates. 

The President's Committee on Mental 

Retardation has played an important role in 

highlighting issues central to the legal rights of 

citizens with mental retardation. By bringing these 

issues into a national arena for debate and 

discussion, the Committee intends to focus the 

attention of policy makers and the general public on 

the needs of these citizens. This permits 

consideration of the issues and goals, and 

encourages development of strategies to impact on 

future developments.

2 
II. The Population of Citizens with Mental 

Retardation 

Identification and Description of the Population of 

Citizens with Mental Retardation 

The meaning of the term mental retardation has 

changed with some frequency over the years. Some 

words which originally had specific, professional 

meanings in the field of mental deficiency/mental 

retardation were, incorporated into the general language, used as pejorative and then gradually replaced 

in professional use. Different professions defined 

mental retardation in terms of each profession's view 

of human development. As our view of mental retardation changed, different professions became dominant in the field. Over the years, medical, psychiatric, 

psychological, educational and rehabilitation 

personnel each have had the primary role in 

determining how we view the people who were 

labeled as mentally retarded. 

Professional terminology established classifications 

which described .the degree of intellectual deficit. 

Persons were described as having borderline, mild, 

moderate or severe mental retardation. As recently as 

35 years ago, the I.Q. score was widely accepted as 

fixed, and persons with I.Q.'s below 50 were deemed 

not able to profit from educational services and in 

need of long term care and custody. Education and 

rehabilitation services for this population were not 

generally available. Instead of diagnosing or describing, classifications set limits. We did not expect higher 

levels of performance and behavior, and we did not 

get them. Unfortunately, some professional and many 

lay persons dismiss the significant advances and 

demonstrated successes of the past three decades and 

believe that the above limits are, in fact, a true reflection of the needs and abilities of persons with mental 

retardation. 

Changes in our belief system started to accelerate 

when parents organized to advocate for services for 

their children. Their advocacy was a grassroots effort 

to help themselves and other families and to define the 

problems of mental retardation from the reality base 

experienced by the families. The classification system 

was modified to redefine and to establish mild or 

educable; moderate and severe or trainable; and 

profound levels of retardation. Slowly, public schools 

opened classes for trainable students as new 

approaches and technologies were developed to meet 

the needs of this population. Students were benefiting 

from these programs and were remaining in the 

community. 

Behavioral teaching techniques served these 

students in educational, vocational and social settings. 

Professionals in sheltered workshops and in other prevocational and vocational programs were learning 

how to structure the program and the environment so 

that adolescents and young adults with mental retardation could function socially while meeting the 

demands of relatively complex vocational activities. 

Concurrently, these individuals with mental retardation were demonstrating their abilities to live and 

function in a variety of community based, residential 

settings. The lack of performance and the failure of 

earlier generations of persons with mental retardation 

were more the result of limitations set by our belief 

and by our inadequate training programs, rather than 

by the actual abilities of these individuals. 

For students who were labeled as borderline or as 

mildly mentally retarded, it became apparent that as 

adults, once they were out of school, they were integrated into the general population. Labeled and treated 

as retarded during their school years, they apparently 

had the capability to function as adults in ways that 

did not differentiate them from their peers. Thus, they 

were able to lose the stigma of the label "mentally 

retarded". This situation was vividly brought to the 

attention of the nation by the President's Committee 

on Mental Retardation when it published a report of a 

1969 conference, The Six-Hour Retarded Child.

As more was learned about the true performance 

potential of persons with mental retardation, movement 

toward community placements and community based 

services became more pronounced. Building upon the 

concept of normalization, leaders and advocates in the 

field worked to make the patterns and conditions of 

the general society as available as possible to 

individuals who were classified as mentally retarded. 

This movement was incorporated in major national 

efforts, including programs such as deinstitutionalization, the transfer of residents from large, often isolated 

public facilities to community settings; 

mainstreaming, the provision of educational services 

for students with mental retardation within regular 

classes and school settings; integration, the involvement of persons with mental retardation in programs, 

services and activities enjoyed by the general public; 

and community living, establishing residences which 

are family sized and are located in neighborhood 

residential areas. 

3 
that normalization facilitates and supports the 

fullest development and independence of the 

individual with mental retardation. Normalization 

tailors programs and services to the needs of the 

individual and measures options in terms of the 

alternative least restrictive to the person. 

In 1973, Congress established a national priority 

of serving the most severely disabled persons 

when it passed the Rehabilitation Act. The 

Education for all Handicapped Children Act of 

1975 incorporated the standard that all children 

with disabilities can benefit from a free, 

appropriate education; that, to the maximum extent 

possible, children with handicaps are to be 

educated with children who are not handicapped; 

and that parents are to have an active role in the 

educational planning for their children. Some 

educational and vocational programs, striving to 

address the challenges and the vision of these laws, 

have created and implemented model programs. 

These programs have demonstrated the value of 

the new approaches and their positive impact on 

the lives of persons with mental retardation and 

their families. Services provided through these 

programs meet individual needs and encourage 

growth and the highest possible level of 

independent, adult living. 

Unfortunately, these achievements are not 

consistent across the nation. What one community 

actually accomplishes with educational, vocational 

and social programs may be seen as impossible by 

a neighboring community. Federal and State laws 

and constitutions provide to individuals with 

disabilities many of the same rights provided to the 

general population. Included are access to 

mainstreamed educational programming, 

integrated community living arrangements, 

transitional educational-vocational programs, and 

health, social and recreational services. Availability 

and use of these services and facilities vary as 

professionals, family members and other 

advocates debate what research demonstrates, how 

broadly experiences and successes can translate 

from one setting to another, what is the least 

restrictive alternative, and which programs or 

approaches are in the best interest of the person 

with mental retardation. 

By the 1970's, Federal court rulings defining and 

establishing a right to treatment were 

complemented by the Education for All 

Handicapped Children Act and the Rehabilitation 

Act. Growing militancy within the disability 

community and the demand for appropriate 

services, for options and for self determination 

followed and paralleled civil rights developments 

in the racial field. 

Legislation which established specific civil 

rights for citizens with disabilities encouraged 

these individuals in their personal advocacy. They 

were no longer willing to permit others to make 

decisions for them. Legislators, policy makers, 

service providers as well as relatives and neighbors 

were challenged as persons with disabilities 

demanded their rights and demonstrated their 

abilities to represent themselves. Initially, 

leadership in the disability community was 

provided by articulate individuals who had various 

physical disabilities. These persons advocated for 

themselves and their peers. Unfortunately, there 

was little contact with persons who were advocates 

in the mental retardation field. 

Many individuals believed that people with 

mental retardation were unable to advocate for 

themselves and needed parents, guardians or others 

to advocate for them. While the need for an 

advocate is apparent for newborn retarded infants, 

or for individuals at any age who are severely 

limited in their ability to communicate, there is a 

growing appreciation of the ability of most persons 

with mental retardation to advocate for themselves 

and to be active participants in the advocacy effort. 

The success of self help groups regularly 

demonstrates this ability. People First, a national 

organization created and run by individuals with 

mental retardation, is an excellent example of the 

self advocacy movement. 

As we approach the remaining years of this 

century, our society will continue to be challenged 

to meet the needs of its citizens with mental 

retardation. Reduced resources demand that we 

make wise choices and decisions. The creative use 

of pubic programs and public- private sector 

partnerships will help guarantee that the rights of 

these persons are not violated. Current estimates set 

the number of persons with mentally retardation at 

over six million. Health surveys continue to report 

increases in this population, particularly persons 

with severe retardation. We must ensure that the 

millions of citizens with mental retardation are integrated into society as fully as possible. These efforts 

will result in productive, useful citizens who 

participate in and contribute to the American 

society.

4 
III. Citizens with Mental Retardation as Part of the 

Community 

The value of Community Integration of Citizens 

with Mental Retardation to the Individual, to the 

Family and to the Society 

Recommendation: Continued emphasis on 

programs and services which support opportunities for 

citizens with mental retardation to live as part of the 

community and, insofar as possible, to function as 

contributing members of society. 

There has been vigorous discussion across the 

nation about the validity of an approach that works 

toward the norm of full community integration of 

individuals with mental retardation. Some people cite 

the value of placement in improved, large facilities; 

others cite concerns of reduced land values when 

persons with mental retardation move into the 

neighborhood. Many advocates emphasize the value 

to the individual and to the society of community 

placement and look for the best techniques for 

achieving this goal while minimizing or eliminating 

the use of large residential settings. Some ask if it ever 

is necessary to segregate persons with mental 

retardation from their families and communities. 

Questions are raised about the generally held 

assumption that legislation and litigation should provide the primary tools for promoting the well-being of 

all citizens with mental retardation. The keynote 

speaker at the Grailville Conference suggested that 

community "beneficence" can create a good and normalized life for people with mental retardation and 

that litigation might jeopardize this benevolence. His 

remarks posed a real challenge to the participants, 

most of whom had actively sought and achieved gains 

through both legislation and litigation and whose 

experiences suggest the lack of community beneficence. Participants agreed that, although thorough 

efforts should be made to educate the public, reliance 

on benevolence at the expense of rights would perpetuate the stigma of charity. The result would be fewer 

opportunities for persons with mental retardation to 

exercise and enjoy their full rights as citizens. 

There are clear and desirable alternatives to 

dependence on community benevolence. Whether 

identifiable by race or class or mental retardation or 

any other characteristic, we are inescapably members 

of the same community and all benefit from its diversity. Given that, some advocates argue that there is a 

priority to the value of community over the values of 

liberty and equality. Under this viewpoint, 

community placement of individuals with mental 

retardation is seen as valuable, not only to those 

individuals, but also to the community as a whole. 

The concept of a single community can be 

integrated with an emphasis on individualism, 

provided the rights of the individual are protected. 

Recent legislation has supported the role of parents 

and the family in programming decisions for their 

children and has supported the value of community 

based services. Throughout the core of our personal 

and social values is the concept of a single 

community, where all citizens can live, learn, work 

and play. Yet, ideals of liberty and equality represent 

other basic constitutional values, which sometimes are 

in conflict with community. Because of the conflict in 

these basic values, reasonable, not total, 

accommodation of special needs should be our goal. 

Accommodation must be guided by the intent to 

further the participation of citizens with mental 

retardation as members of the general community. 

Public Law 94-142 and Section 

504 Resolution of the President's 

Committee on Mental Retardation 

Whereas, disabled children and adults have 

historically been denied the right to obtain a 

meaningful education, appropriate vocational 

training, and access to basic human services, and 

have been relegated to a role of dependency and a 

loss of human dignity; and 

Whereas, the Education of All Handicapped Children 

Act, Public Law 94-142, was passed into law to 

guarantee disabled children a right to a free public 

education provided in conjunction with specific 

related services which would allow them to have an 

equal educational opportunity; and 

Whereas, Section 504 of the 1973 Rehabilitation Act 

guarantees that as these disabled children grow into 

adulthood, they will be provided with equal access 

to the educational, training, employment, social 

services, transportation and housing services available to the nondisabled; and 

Whereas, the implementation of both of these laws

5 
through Federal regulations over the last five 

years has resulted in greater opportunities for 

meaningful educational programs for over 4 

million disabled children throughout the 

country, and uncounted numbers of disabled 

adults from lives of total dependency and low 

self-esteem to productive lives through 

increased employment and training opportunities and expanded avenues to social services 

and community life; and

Whereas, the premise that some disabled persons 

would not be able to benefit from meaningful 

educational and training opportunities, and that a 

determination should be made regarding the extent 

to which disabled people would either benefit 

from or contribute to the operations of a program 

in a manner which would be "socially beneficial" to 

all parties, speaks to age-old prejudice against the 

disabled, denies them basic human dignity, and is 

antithetical to the concept of equal citizenship; and

Whereas, these two laws were passed because 

similar protections were not and are hot.Nt'd.ilable 

through existing. States' statutes; 

Therefore, Be It Resolved that the President's 

Committee on Mental Retardation reaffirms 

their strong commitment to retaining the 

existing laws and regulations pertaining to 

Public Law 94-142 and Section 504 in 

substantially their present form, and encourages 

the President to take a positive and public stand 

to halt all efforts to change these laws through 

regulatory and legislative reform that would 

adversely affect mentally retarded citizens. 

Through these laws, the way has been cleared 

for preparing a large segment of our society to 

move from lives of dependency to greater 

independency by becoming tax-paying citizens. 

Public Law 94-142 and Section 504, and their 

implementing regulations constitute an 

investment, rather than a burden, to society. 

6 
IV. New Federalism 

Relationship of State Laws and Courts to the Federal 

Role as a Source of Rights of Citizens with Mental 

Retardation 

A. Litigation 

Recommendation: Extend the use of State courts as 

well as Federal courts to protect and expand the 

interests and rights of citizens with mental 

retardation. 

Much of the advocacy effort on behalf of persons 

with mental retardation has been conducted at the 

Federal level, using class action suits to obtain constitutional and statutory rights. Strong efforts must 

continue at this level to ensure the continued availability of Federally protected rights. At the same 

time, the new Federalism suggests increasing our 

attention to and reliance on State level remedies and 

guarantees for citizens with mental retardation. 

Recent experience demonstrates a growing 

emphasis upon local control and decision making. 

This suggests the value and desirability of looking 

to the State level for relief. State constitutions and 

laws provide a wide panoply of protections beyond 

those in the Federal arena. Our Federal system 

allows citizens of States to invoke State laws for 

additional protection; Federal law only sets 

minimum requirements. 

Careful documentation of existing State constitutional guarantees, particularly those that go beyond 

Federal levels of protection, will greatly assist advocates for the rights of citizens with mental 

retardation. For example, in several States, 

handicapped persons have been designated a 

suspect class entitled to heightened scrutiny under 

the State's equal protection clause. In other States, 

guarantees of equal protection have no State action 

requirement. 

We must encourage advocates to develop 

creative approaches to legal rights litigation at the 

State level. At the Federal level, information about 

actions and decisions receives rapid, national 

distribution. Unfortunately, information may not 

easily cross State boundaries. We should encourage 

systems of information exchange such as that of the 

national network of State Protection and Advocacy 

agencies. At the same time, however, we must 

continue to use Federal courts to protect the rights 

of citizens with mental retardation. 

Strategies should be reassessed to maintain our 

gains in advancing the rights of people with mental 

retardation and to identify methods that would be 

successful through the remainder of this century. 

Conference participants considered alternatives. 

Given the success of integration and normalization, 

some participants believed that legal efforts should 

be directed toward small scale interventions on 

individual cases rather than large scale, class action 

suits. Conversely, others offered the hope that the 

Conference would provide the impetus for a new 

spurt of litigation. Toward that end, a catalogue of 

alternative legal bases was presented for continued 

pursuit of rights litigation through class action suits. 

B. Legislation 

Recommendations: At the Federal level, renewed 

emphasis should be placed on fulfilling the goals 

expressed in Section 504 of the Rehabilitation Act 

and PL 94-142, Education for All Handicapped 

Children Act, and on the removal of categorical 

labels from Federal legislation. At the State level, 

emphasis should be on enacting laws that 

recognize the rights of persons with mental 

retardation. 

Every listing of landmark disability legislation 

features Section 504 of the Rehabilitation Act and 

the Education for All Handicapped Children Act. 

Each of these important pieces of legislation 

presented and continues to present a positive, 

changing and optimistic image of persons with 

disabilities. It is noteworthy that during the 

legislative process, individuals with disabilities 

were in the forefront, advocating for these laws and 

for the regulations necessary for their 

implementation. 

Handicapped Children's Protection 

Act Resolution of the President's 

Committee on Mental Retardation 

Whereas, the President has expressed his concerns 

that the educational needs of handicapped 

children be met; and 

Whereas, earlier this year in the case of Smith vs. 

Robinson, the U.S. Supreme Court concluded that, 

where both statutes are applicable, the Education 

for All Handicapped Children Act (EHA) supersedes and preempfs Section 504 of the 

Rehabilitation Act of 1973, the Fourteenth 

Amendment and other

7 
Federal Statutes in establishing a basic guarantee of 

a free appropriate education for school age handicapped children; and 

Whereas, the practical effects of this decision are both 

to eliminate Section 504 as a vehicle for protecting 

the rights of mentally retarded and other handicapped school age children to a free appropriate 

public education, and to prevent the award of attorney's fees to parents who successfully challenge the 

denial of their children's rights in Federal court; and 

Whereas, the award of attorney's fees is an important 

and just incentive for parents to actively protect the 

rights of their children in cases where parents 

overturn improper administrative decisions or 

where school systems appeal proper administrative 

decisions; 

Now, Therefore be it Resolved that the President's 

Committee on Mental Retardation strongly 

endorses S2859, the Handicapped Children's 

Protection Act of 1984, which is designed both to 

restore the free access of parents of mentally 

retarded and other handicapped children to Federal 

courts under Section 504, and clearly to authorize 

Federal judges to award attorney's fees to parents 

where litigation by parents challenging schools 

district action is successful in the Federal courts 

under either or both Section 504 or the Education of 

All Handicapped Children Act. 

The needs of society are met best when children are 

prepared to be active, contributing adults. Evidence 

establishes that children with special needs are served 

best in integrated programs with appropriate services 

and the full involvement of their parents in program 

planning and placement. Families are strengthened 

when all family members are supported and maintained in the home community. The Education for All 

Handicapped Children Act builds on these values. It 

guarantees the right of every disabled child to a free, 

appropriate education in the least restrictive environment. Community based programs increase the probability that the individual will be able to function at an 

optimal level as an adult in the community. 

The Rehabilitation Act also strongly supports the 

community participation of people with disabilities. 

The right of access, guaranteed in the Act, presumes 

public participation by people with disabilities. Handicapped parking spaces mean that people with disabilities drive and are able to come to concert halls, 

stores, shopping centers, movies, schools and court 

houses. Bans on job discrimination mean that people 

with disabilities can and do function competitively in 

the American workplace. 

Some advocates argue that some interpretations by 

the courts and the implementation of these interpretations by the administrating agencies have fallen short 

of the potential in the Federal legislation. Further, 

there are advocates who observe that certain fiscal 

patterns set in law and regulations may favor one program alternative over another. In some situations 

where program implementation is based on funding 

rather than on the individual's needs, the result may be 

inappropriate or segregated services and programs. 

The person with mental retardation may be deprived 

of an opportunity to experience integration within the 

community. 

Particularly in the area of education, once compliance with Federal requirements is assured, program 

directions are determined by State laws and regulations. For example, it may be cheaper for a local 

school district to send a disabled student to another 

district, perhaps even out of state, rather than to 

establish an appropriate program in the home community. Funds may be available to support placement 

in large residential settings, but not to maintain the 

child in the home. Children who are exposed to other 

children with disabilities grow in understanding and 

acceptance. The entire community gains from this. 

Leadership in support of community placements 

has been demonstrated by a number of States. 

Michigan was cited as an example of a State which 

recently enacted legislation to provide funds directly 

to the families of children with disabilities. These 

funds are intended to assist families in their efforts to 

maintain their disabled children in the home and to 

prevent institutionalization. Comparable actions in 

other States support the view of the State level as the 

active arena for advocacy for innovative legislation. 

There is additional justification for advocates to 

work on a State by State basis to insure that appropriate educational experiences are available in each 

student's community. One can cross the country and 

identify examples of outstanding programs. These 

programs can serve as models of successful 

approaches which assist very difficult to serve 

students. Yet these programs are not available to all of 

the students who could benefit from them. 

Application of state-of-the-art principles will promote the goals represented in innovative programs 

that are supported by State level legislative enactments 

and regulations. State-of-the-art programming means 

that if one child anywhere is able to remain at home 

because school officials have figured out how to provide needed education and family support services, 

then any child with similar needs should have the 

same opportunity to remain in the family setting and 

the home community. The use of state-of-the-art 

technology also applies to providing adults with requisite support for successful employment, for a rang

8 
of social, health and recreational opportunities, 

and for community based, family sized living 

arrangements. 

Historically, there has been relatively little 

contact between advocates representing persons 

with chronic, life-long disabilities and activists 

representing disabled veterans and groups of 

physically disabled individuals. Linkage with the 

broad, national, disability rights movement and 

with advocates representing older Americans will 

expand the horizons of persons with mental 

retardation and will provide them with a sense of 

belonging. Such linkages also will help other 

disabled persons understand the needs and 

strengths of individuals with mental retardation. 

One aspect of a cross-disability movement is the 

strong de-emphasis on categorical labels. A 

strong, negative stigma is attached to most 

labels, particularly to the term "mentally 

retarded". Participation in a larger movement 

encompassing many different kinds of people 

focuses on our common humanity and on our 

strengths. 

Consider Elizabeth, a young lady with autism, 

who attended a series of special elementary 

schools to which she traveled on special buses. 

In an interview, Elizabeth stated: "Elementary 

school made me retarded!" Elizabeth's exclamation 

communicates a wealth of information about her 

view of the stigma attached to the school 

situations that she experienced. If segregation in 

special schools can so devastate a child who 

later joined her peers, imagine its impact on the 

self- image of children either totally excluded 

from school or forced to attend special residential 

schools far from home. 

Educationally and socially, a label becomes a 

self- fulfilling prophecy of limited expectations 

and of imposed isolation. Categorical labels 

should be removed from both Federal and State 

legislation. The need for classification for data 

collection and funding should not be permitted 

to legitimatize the labeling and stigmatizing of 

children. Approaches which avoid this problem 

should be explored in state-of-the-art programs. 

Successful techniques should be incorporated 

into guiding principles for education, other 

service systems, and for living accommodations.

9 
V. Least Restrictive Environment 

Application of the Concept of Least Restrictive 

Environment to Provide Services and Rights for Citizens 

with Mental Retardation 

Recommendation: Apply the concept of 

normalization to provide the least restrictive 

environment in education, housing and community 

participation. 

Normalization is described in a 1969 publication of 

the President's Committee on Mental Retardation, 

Changing Patterns of Residential Services of the 

Mentally Retarded. Its goal is to permit persons with 

mental retardation to live as normal a life as possible by 

making available to them patterns and conditions of 

everyday life which are as close as possible to the norms 

and patterns of the mainstream of society. It does not 

mean to apply normal or usual treatment, but rather to 

use specially designed program approaches and 

modifications within the environment which help the 

individual live a life as close to the community norm 

as possible. A community based group home meets 

this standard when the residents are socially and 

programmatically integrated into its neighborhood 

and community. 

In seeking the goal of providing as normal a life as 

possible, special treatment is required, particularly for 

those individuals with more severe mental retardation 

who have been deprived of opportunities to interact 

with non-disabled people. Under the standard of 

social and programmatic integration, experiences are 

made available which are appropriate for the age of 

the individual. Opportunities are necessary for education, work, independent living and leisure time activities. Normalization has stimulated efforts to establish 

the least restrictive setting for persons with mental 

retardation and has supported the strong efforts 

toward mainstreaming and residential placement in 

community settings. 

A major thrust of normalization in education is 

functional programming. The idea behind the functional approach is to adapt the curriculum to accommodate alternative teaching strategies designed to 

compensate for particular skills deficits. For example, 

despite creative teaching, a student may be unable to 

tell time. This skill deficit would prove problematic to 

that student's ability to work in a factory setting. Yet 

the same student could be taught to respond to timerelated social cues and, as a result, become 

employable. 

The least restrictive environment in education is 

more than physical integration of children with 

mental retardation into a regular education school 

building. It means social and program integration 

within the central core of the school's educational 

efforts to whatever extent feasible. Both disabled and 

non- disabled students benefit from integrated 

programming as each learns about the strengths and 

weaknesses, the quality of humanity, of the other. 

The goal of functional programming is to develop 

skills so that greater independence and participation 

can be achieved. This goal extends beyond education 

to housing and community participation. These skills 

include learning to cross busy streets, to order food in 

restaurants, to use recreational and leisure time facilities, to work in actual work settings, and to use 

proper hygiene methods. 

These skills can best be taught in settings that 

closely approximate the natural settings in which 

students will later function. For example, if a student 

is learning to cross the street, it helps to see other 

people doing the same thing, to hear the noises of car 

engines and horns, and to pick up on cues associated 

with safe crossings. Learning to work in a job setting 

exposes the trainee to the sights and sounds of the 

workplace, and to the model behavior of nondisabled workers carrying out their work 

assignments. Thus, a major means of applying the 

concept of the least restrictive environment is to use 

the community as the focus for educating its citizens 

with mental retardation. 

In terms of residential living, the least restrictive environment means more than community placement. 

Programs and experiences must be structured to ensure that community facilities and services support 

the concepts of normalization. The location of the 

residence in the community, the number of residents 

in a home, their freedom to direct their own activities, 

the absence of dehumanizing rules and practices and 

the availability of appropriate program options all 

must be considered in determining that a community 

residence does, in fact, support normalization and 

provides a least restrictive environment. Such a 

setting provides for the social, vocational and political 

interaction of people with mental retardation with 

other individuals in the general community. 

Advocates seek to combat efforts limiting the 

opportunities for citizens with mental retardation 

to live within residential areas in local 

communities. When a group home is proposed, 

some neighbors may be concerned and fearful. 

Their arguments may range from

10 
the emotional to the legalistic. Some people work 

to exclude individuals with mental retardation from 

their community, frequently using zoning 

ordinances in their efforts to prevent, segregate 

or eliminate residences for persons with mental 

retardation from those communities. It is 

noteworthy that a growing number of State and 

local jurisdictions have used zoning ordinances 

and laws to establish that group homes for a 

small number of unrelated persons with mental 

retardation meet the standards set for the highest 

residential classification. 

Cleburne, Texas, was the focus of national 

attention in a zoning case as it slowly worked its 

way through the appeal process. In City of 

Cleburne, Texas v. Cleburne Living Center, the 

United States Supreme Court was asked to 

determine the constitutionality of a municipal 

zoning ordinance that required a special use 

permit for the operation of a group home for 

people with mental retardation. 

Resolution on the 

Cleburne Case by the 

President's Committee on 

Mental Retardation 

Whereas: Mentally retarded persons have 

historically been subjected to State imposed 

exclusion from education, employment and 

housing and denied the opportunity to 

participate fully in American community life; 

and 

Whereas: Systematic State imposed exclusion 

and hostile differential treatment continue to 

prevent mentally retarded persons from full 

enjoyment of the rights and opportunities 

guaranteed to other citizens such as the right to 

associate actively within the social and 

economic fabric of families, neighborhoods, 

and communities, unrestricted by prejudice or 

stereotype; and 

Whereas: The zoning ordinance passed by the 

City of Cleburne, Texas, in 1929, excluding 

except by special use permit from apartment 

districts and other areas of the city where 

congregated living is permitted, 

"feeble minded" persons, is an integral part of 

this type of systematic State exclusion of and 

hostile treatment towards mentally retarded 

citizens; and 

Whereas: The President's Committee on Mental 

Retardation has consistently supported all efforts 

to combat and overcome the effects of State 

imposed exclusion and hostility toward 

mentally retarded Americans and to establish 

the right of mentally 

retarded persons to choose their living arrangements; and 

Whereas: Group Homes currently are the 

principal community living alternatives for 

persons who are mentally retarded and the 

availability of such a home in communities is 

an essential ingredient of normal living patterns 

for mentally retarded persons; and 

Whereas: The President's Committee on Mental 

Retardation has long recognized that mentally 

retarded citizens lack sufficient political power 

to effectively access or use the political and 

legislative process to assert and to protect their 

basic rights; and 

Whereas: The President's Committee on Mental 

Retardation has vigorously supported both 

legislative and judicial action to ensure Equal 

Protection under the laws of States and 

localities; and 

Whereas: The Fifth Circuit Court of Appeals 

has properly struck down the Cleburne 

Ordinance as contrary to the Equal Protection 

guarantees of the Fourteenth Amendment of the 

U.S. Constitution; and 

Whereas: The Supreme Court of the United 

States now has before it a challenge to the 

application of this zoning ordinance under the 

Equal Protection Clause; 

Now Therefore be it Resolved That: The President's 

Committee on Mental Retardation publicly 

express its view that the application of the 

Cleburne Ordinance to Americans with 

Mental Retardation represents a type of 

unlawful invidious discrimination existing 

across the Nation which is barred by the U.S. 

Constitution. 

The issue before the Court was whether the 

zoning ordinance, on its face or as applied, 

violated the equal protection rights of potential 

residents of the Cleburne Living Center. The 

Court held that the ordinance was invalid because 

no reasonable governmental purpose was 

furthered by the restriction. Indeed, a combined 

reading of the majority and concurring opinions 

suggests that excluding people with mental 

retardation from the community is so irrational 

and so contrary to our constitutional values 

that such exclusions violate even the minimum 

rationality required under the equal protection 

clause.

11 
VI. Self-Advocacy 

Self-Advocacy as a Practice by Citizens with Mental 

Retardation to Enhance Their Role in Determining Goals 

and Strategies and in Choosing Among Options 

Recommendation: Encourage self-advocacy and provide training in related skills so that citizens with 

mental retardation can play a prominent and an active 

role in determining and working for their goals. 

During the last half of this century, automobile 

accidents and the human devastation of wars have disabled many Americans. As an aftermath of these 

events, there has been a rapidly growing number of 

individuals with disabilities who live and work within 

the community in close contact with the general population. It is difficult to apply stereotypes about persons 

with disabilities to the next door neighbor you had 

known as a productive, able-bodied citizen, but who 

happened to lose an arm or a leg, or who now has to 

use crutches or a wheelchair. 

Society has been learning to accept and 

integrate some of its disabled members. As these 

citizens with disabilities fight for their own rights, 

barriers to their integration slowly have been coming 

down. Individuals who became disabled as adults 

were accustomed to function independently, to 

make decisions about their lives, and to determine 

their own participation in society. They want to 

continue to do so. 

The rising visibility of these individuals has 

challenged many traditional ideas about disability 

and activism. Such persons provide viable and 

useful models for the mental retardation field. 

The driving force of many individuals disabled in 

an accident or in a war has been a desire to return as 

fully and as actively as possible to all areas of their 

lives. They wish to remain in their homes and communities and on their jobs. However, they were faced 

with the prejudices and barriers set up by architecture, 

attitudes, professional practices, laws, regulations and 

ignorance. Led by persons with physical disabilities, 

the anthem of the disability rights movement became 

self-determination. People with disabilities demanded 

control over their own affairs on every level, from 

governmental decision-making to personal care. Selfadvocacy has become an important, central part of 

the drive toward self-determination. Self-advocacy 

groups have sprung up across the nation as persons 

with disabilities identified what they wanted and as 

they worked, lobbied and fought for their rights. 

One of the primary benefits of self-advocacy 

efforts is its positive effect on the advocates. 

Participants develop a growing awareness and 

understanding of the demands and rewards of 

community living and of the meaning and rights of 

citizenship. The growing awareness that one has rights 

and the willingness to advocate for those rights in a 

public arena can lead to an appreciation of the 

Constitution and of Federal and State legislation. And 

by speaking up on their own behalf, self-advocates 

teach the general society about the potential and 

capabilities of persons who may happen to have 

disabilities. 

Self-advocacy came slowly to people with mental 

retardation. Many parents and other advocates 

initially made the assumption that advocacy had to be 

for rather than by a constituency of persons with 

mental retardation. Well intended advocates, acting 

on behalf of their clients, often assumed what was 

wanted and what was in the best interests of those 

individuals. When we ask their goals, we find that 

adults with mental retardation want interesting jobs, 

appropriate salary, living arrangements as 

independent and self directed as possible, variety and 

choice for leisure time activities, vacation 

opportunities, and the educational and vocational 

preparation which will permit them to reach those 

goals.

Grove City Resolution of the 

President's Committee on 

Mental Retardation 

Whereas: the President, in response to the 

Supreme Court decision in Grove City College vs. 

Bell, stated his view that it was important to the 

continued protection of the civil rights of 

millions of Americans, including handicapped 

and disabled Americans, that the Congress act 

promptly to restore the interpretation of Federal 

civil rights statutes altered by the Court; 

Now Therefore be it Resolved that the President's 

Committee on Mental Retardation endorses the 

current 504 Regulations on Federally assisted 

programs and the rights and remedies guaranteed 

within and urges the Congress to incorporate the 

basic concepts of these Regulations in appropriate 

legislation in order to ensure the effective protection 

of the civil

12 
rights and full societal participation of 36 million 

handicapped and disabled Americans. 

Unwilling to remain passive, some individuals 

with mental retardation started to form self-help 

groups, such as People First, to discuss issues 

they saw as important and to demand 

opportunities to speak for themselves. This 

movement has been growing and, in the last 

decade, examples of self-advocacy have become 

commonplace. Advocates with mental retardation 

demonstrated their skills by speaking out on 

services, facilities, communities and legislation. 

Their efforts have helped them achieve their 

goals while changing the view that others had of 

them. 

The experiences of one self-advocate can serve 

as an example of the accomplishments of this 

activist group. Richard Sedor had spent sixteen 

years in institutions. Upon placement in a 

community residence, he labored through several 

workshops to regular employment. Upon hearing 

the admonitions of radio and television that 

prudent people open savings accounts, he went 

to a bank to open such an account. The supervisor 

refused his request. Mr. Sedor knew that he was 

being wronged. He complained to his local 

legislator about the bank that refused to take his 

money and open a savings account for him. The 

legislator arranged for him to testify before a 

committee considering antidiscrimination 

legislation. Richard Sedor's simple, 

straightforward story was a key element in the 

passage of this legislation in Connecticut. 

Appropriate training and related experiences 

enhance the effectiveness of self-advocacy. A 

growing understanding of the needs and abilities 

of adults with mental retardation has resulted in 

the development of new approaches to support 

independent functioning. Advances in educational 

technology have made available reading-free 

workbooks, slide shows and audio tapes designed 

for use by persons with reading problems. 

Community colleges and adult education programs have organized courses tailored to the 

special needs of persons with mental retardation 

and have accepted them in appropriate courses. 

Self-advocacy offers much promise to enhance 

the gains of citizens with mental retardation, 

particularly at this time of budget-cutting and 

economizing. Encouragement of self-advocacy 

requires no extensive building programs and no 

new agency services which usually require large 

numbers of highly trained, professional staff. Yet 

self-advocacy can provide a powerful means to 

enhance public support and to develop true 

community integration by demonstrating the 

capabilities of individuals with mental 

retardation. 

One of the strengths of the self-advocacy 

movement has been the networking which has 

occurred among advocates from various disability 

groups. Building on their broad base of common 

interests, shared experiences and common goals, 

members of disability groups coordinated their 

efforts and became a powerful political force. 

These same opportunities extend into the mental 

retardation field. Persons with mental retardation 

and the entire society will benefit as these efforts 

are continued and expanded.

13 
VII. Right of Survival 

Decisions on the Kind of Life and on Life Itself Cannot 

Be Based Solely on a Diagnosis of Mental Retardation 

nor on Projections about the Expected Quality of That 

Life 

Recommendation: All mentally retarded people are 

to be free from the denial of medical service based 

on the judgment that the quality of life of a retarded 

person is less than that of other citizens or based on 

anticipated mental potential. 

Two puzzles are relevant to this issue. First, we must 

consider why a dichotomy exists between the law on the 

books, which apparently outlaws the withholding of lifesustaining care, and the law in action, which fails to 

punish and thus apparently allows it. Second, we must 

consider why the lack of treatment of newborns with 

handicapping conditions has evoked a violent storm of 

controversy. Decisions which once were made in 

private have now become more public. Advances in 

medicine have made questions about how to treat 

disabled newborn infants more numerous and 

pressing.

The Infant DOE Resolution of 

the President's Committee on 

Mental Retardation 

Whereas, the recent death of infant Doe on April 

15th, 1982, in Bloomington, Indiana shocked the 

nation, by illustrating the reality that mentally 

retarded people continue to be treated as less than 

full citizens in the U.S.; and 

Whereas, The President's Committee on Mental 

Retardation at its first meeting as a full 

Committee in 1982 reviewed the nature and this 

injustice; and 

Whereas, the PCMR in its Annual Report to the 

President of the United States, in March 1976, 

addressed its concerns regarding the 

infringement of rights of mentally retarded 

persons over generations and the specific 

continued infringement of rights by a lack of 

equal access to quality health care and the denial 

of life-saving medical services; and 

Whereas, the President of the United States has 

instructed the Secretary of Health and Human 

Services April 30th, 1982, to notify health care 

providers to enforce Sec. 504 of the 

Rehabilitation Act of 1973, that forbids recipients 

of Federal funds to withhold from benefit or 

service ordinarily provided to persons without 

handicaps; and 

Whereas, it has been six years since the President's 

Committee has gone on public record reaffirming 

its position of full citizenship status and legal 

rights for all mentally retarded citizens; 

Be It Therefore Resolved, that all mentally retarded 

persons-including new-born infants, have the 

right to be free from the arbitrary denial of 

lifesaving medical services and that this right is 

premised on a recognition that mentally retarded 

persons must be allowed equal access to medical 

services to preserve their lives and such a right 

rules out any practice which would not allow 

retarded persons their right to life based upon a 

judgement that the quality of life of a retarded 

person is less than that of other citizens, or any 

routine policies or guidelines predetermining the 

withdrawal of life support from impaired 

newborn babies on predicted mental potential 

alone. 

Disputes in this area often are couched in terms 

of the rights of the parents versus the rights of the 

child. Some decisions about treatment options have 

been made on the basis of the projected quality of 

life and the anticipated intellectual functioning level 

of the infant. Federal laws passed since the Infant 

Doe Case, such as the Child Abuse Amendments of 

1984, have rejected the use of quality of life criteria 

to deprive disabled infants of medical care. These 

laws mandate medically indicated treatment for 

disabled infants with life-threatening conditions. 

Child Abuse Prevention and 

Treatment Act Resolution of the 

President's Committee on 

Mental Retardation 

Whereas: President Reagan has sought to protect 

handicapped newborns through Federal Law 

from the discriminatory denial of beneficial 

medical care; and

14 
Whereas: State and local child protective 

services agencies have a responsibility under 

State law to act to prevent neglect and abuse of 

handicapped newborns who may be denied 

medically beneficial treatment; and 

Whereas: Congress is considering legislation to 

insure that State and local child protective 

services agencies, which receive Federal 

funds, shall protect handicapped newborns who 

may become victims of abuse and neglect; 

Now, Therefore, be it Resolved that the President's 

Committee on Mental Retardation urges 

congressional adoption of the Tentative Joint 

Explanatory Statement of the Committee of 

Conference on the amendments to the Child 

Abuse Prevention and Treatment Act and the 

Adoption Reform Act of 1978. 

It is important not to limit the discussion about 

the right to survival to questions about medical 

treatment of newborn infants with disabilities. 

What we already know about prevention and 

treatment must be applied throughout the entire 

developmental period. Pre-natal care, including 

adequate nutrition and medical services to 

pregnant women, reduces risk to children. 

After the child is born, in order to minimize 

potential problems with mental retardation, there 

is agreement that early intervention programs, 

sound nutrition, and appropriate health, 

behavioral, educational, vocational, and social 

services all are necessary and cost effective 

supports for survival and a full life. 

15 
VIII. Future Strategies 

Guidelines for Individuals in the Public and Private 

Sectors who are Concerned that Citizens with 

Mental Retardation Achieve their Rights 

Progress during the past two decades has aided the 

growth and development of citizens with mental 

retardation in every aspect of American life. 

Legislative and judicial battles have been fought and 

won so that persons with mental retardation can 

assert their basic rights to Life, Liberty and the 

Pursuit of Happiness. Effective advocacy in the 

future will require strengthened efforts so that gains 

continue and additional barriers are eliminated. 

Social goals must be pursued so that individuals with 

mental retardation can exercise their rights of full 

citizenship. 

Maximizing the probability that each citizen 

lives in an environment that promotes economic 

self-sufficiency, independence and dignity is a 

responsibility that is shared among the individual 

citizen, the family, as well as the private, public 

and volunteer sectors. The probability that citizens 

with mental retardation and other developmental 

disabilities experience an environment as described 

will be increased if strategies are developed jointly 

with all responsible parties. The points listed below 

are areas recommended to be considered as future 

strategies are developed. 

 The general public must be educated through 

improved communications. In communication 

efforts, however, we must examine closely not 

only what is said, but also the underlying 

messages that are being delivered. The inherent 

value and dignity of the life of every person with 

mental retardation must be asserted strongly. It 

is important that we use terminology that will 

humanize the people about whom we are speaking. For example, we should refer to "persons or 

citizens with mental retardation," not to "the 

mentally retarded." 

 The issue of community integration would 

benefit from redefinition. People are born integrated in their families. The issue is not whether 

individuals with mental retardation should be 

integrated in the community, but rather whether 

they ever ought to be segregated from it. 

 Adult programs should be addressed in terms 

of economic self-sufficiency and the 

elimination of barriers to independence. 

Unfortunately, the current adult day-care 

system affirms dependency. Positive 

economic implications result from supportive 

work programs and community living. These 

programs and services should be advanced 

aggressively as we communicate to the public 

the value and the contributions to our society 

of persons with mental retardation.

 We should develop coalitions with other groups 

which face the same biases, problems and restricted availability of services. In this area, we 

are not limited to coalitions with the traditional 

disability groups. For example, it is estimated 

that by the year 2000, approximately 45 percent 

of voting Americans will be over 65 years of 

age. Persons with mental retardation share 

several common issues with older Americans, 

including the limited range of community living 

alternatives, flexible and supported work strategies and access to needed medical services. 

Reforms in these areas often may be of advantage to Americans with mental retardation and 

with other disabilities, as well as to older 

American citizens. 

 We should increase significantly the visible advocacy roles of persons with mental retardation. 

Direct public exposure to spokespersons with 

mental retardation would belie commonly held 

dehumanizinig stereotypes. The end result 

would be significant progress toward an overall 

change in public attitudes, a prerequisite to full 

citizenship. 

 At the Federal, State and local levels, legislative 

strategies need to be developed which will 

promote the achievement of the goal of full 

citizenship. In many instances, parallel efforts 

can and should be undertaken. These strategies 

would enhance the opportunities for citizens 

with mental retardation to secure personal 

independence, growth and security; to pursue 

the maximum range of options relating to 

community and family integration, living 

arrangements and social participation; to 

participate in sustained, productive and gainful 

employment; and to achieve social and 

economic self-sufficiency and advancement.

16 
IX. Conclusion 

Creative Approaches to Ensuring Citizens with 

Mental Retardation Equality Under the Law Will 

Need Continued Development 

Citizens with mental retardation are, of course, 

no more homogeneous than the general 

population. What they do share in common as a 

group, however, is a history of enjoying less 

than full access to their rights of full citizenship. 

Over the past 20 or more years, significant 

advances have been made in ensuring continued 

availability of federally protected rights for 

citizens with mental retardation. These 

advances are due in large part to the efforts of 

parent and self advocacy groups and leaders in the 

field of mental retardation. These individuals 

have worked diligently to change American 

society's belief system from one that presumed 

that it was necessary to segregate individuals 

ditions of general society as available as 

possible to individuals with mental retardation. 

This change in public attitude has been reflected 

in major national efforts, such as community 

living, mainstreaming, and the involvement of 

persons with mental retardation in programs, 

services and activities enjoyed by the general 

public. 

In order to continue the progress made over 

the past two decades, into the remaining years 

of the 1980s and beyond, creative approaches to 

ensuring citizens with mental retardation equality 

under the law will continue to need development. 

It is hoped that the information contained in 

this report will prove to be useful as these 

national strateties evolve.

17 
Credits: 

This Report was developed, in part, by I.A.T. 

Associates, Inc., Ann Arbor, Michigan, 

under DHHS Contract SA 85-3937. 

Additional support was provided by the Resident 

Home for the Mentally Retarded of Hamilton 

County, Inc., Cincinnati, Ohio. Valuable 

contributions were provided by the members and 

staff of the President's Committee on Mental 

Retardation, particularly the Subcommittee on 

Full Citizenship. 

Authors: 

Julius S. Cohen, Ed.D. 

Lawrence A. Kane, Jr., Esq. 

Editorial Assistant: 

Phyllis Brown 

Project Officer: 

George N. Bouthilet, Ph.D. 

President's Committee on Mental Retardation 

Project Manager: 

Julius S. Cohen, Ed.D. I.A.T. Associates, Inc. 

Manuscript Reviewers: 

Members and Staff, and the 

Subcommittee on Full Citizenship, 

President's Committee on Mental Retardation

18 

U.S. GOVERNMENT PRINTING OFFICE: 1987 - 165-827 - 814/60332