President’s Committee on Mental Retardation 

The Honorable Margaret Heckler, Chairperson 

Secretary, Department of Health and Human Services

Elsie D. Helsel, Ph.D., Vice Chairperson

CITIZEN MEMBERS 

Albert L Anderson, D.D.S. Vincent C. Gray 

Kathleen Barrett* Madeline B. Harwood 

Richard E. Blanton, Ph.D. Lawrence A. Kane, Jr. 

James Bopp, Jr. Richard J. Kogan 

Lee A. Christoferson, M.D. James L. Kuebelbeck 

Dorothy Corbin Clark Jerry P. Larson 

Vicki Click* D. Beth Macy 

Thomas J. Farrell Timothy J. O’Brien 

Raymond Peterson, M.D.* 

Fred J. Rose 

Anne C. Seggerman 

Marguerite T. Shine 

Lila Thompson 

Virginia J. Thornburgh 

Ruth Warson 

Ex Officio Members

Attorney General 

Secretary of Labor 

Secretary of Housing and 

Urban Development 

Secretary of Education 

Director, ACTIO

*Former Committee Members 

PCMR STAFF 

Michael Albarelli 

Frances Bynoe Andrew 

Linda Bass 

Nancy Borders 

George Bouthilet 

Jacklyn Giles MacInnis 

Ashot Mnatzakanian 

Valerie Nichols 

Essie Norkin 

Robert Polson 

Laverdia Roach 

Miles Santamour 

Bena Smith 

Terry Visek 

Gilda Washington 

Jim Young 
PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

U.S. DEPARTMENT OF HEALTH AND HUMAN 

SERVICES Office of Human Development 

Services 

Washington, D.C. 20201 

Report to the President 
THE SECRETARY OF HEALTH AND HUMAN SERVICES

WASHINGTON. D.C. 20201

MAR 7, 1985 

The President 

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

We are pleased to transmit to you the 15th annual report of the 

President's Committee on Mental Retardation entitled, Mental 

Retardation: Plans for the Future. The committee has worked hard 

and long on this formidable task, and presents its essential 

findings in the pages that follow. What emerges from this document 

is a problem that is massive and multifaceted, but with many of its 

parts clearly open to solutions. Other parts must yield to further 

research. Still others appear to have benefited by our success in 

the past in dealing with the broader problem of the disadvantaged in 

our society. 

The committee has looked at the problem with awareness that, 

important as it is, mental retardation is not the nation's only 

social problem, and that it cannot make unlimited demands on limited 

resources. The committee finds, however, that much can be 

accomplished through better use of what is now available, and makes 

the important point that the investments in prevention and human 

development, wisely planned and administered, can earn significant 

national dividends. 

Sincerely, 

 Margaret M. Heckler 

Chairperson 

Enclosure 
 

Table of Contents 

Introduction 2 

Plan for Public Awareness 3 

Plan for Prevention 6 

Plan for Family and Community Services 8 

Plan for Systems Simplification 14 

Plan for Full Citizenship 19 

Plan for International Activities 23 

 Summary 24 
Mr. President: 

Since appointment to the President's Committee on Mental Retardation, we have worked diligently toward achieving the goals and objectives 

designated by the president's Executive Order for 

this committee, to build for the future of the people 

who we represent, our citizens with mental 

retardation. 

Our building plans rest upon a firm foundation, 

a foundation that began with the parents and 

relatives of family members who were mentally 

retarded. In the early 1930's, it was parents who 

first recognized the gaps and deficiencies in services for children who are mentally retarded, and set 

about to fill the gaps and ameliorate the deficiencies. It was parents, banded together in communities throughout the United States, who first 

sought to provide services for their children who 

were denied educational, vocational, social, and 

recreational opportunities merely because they 

were mentally retarded. And again, during the same 

time period, it was parents who launched fundraising campaigns to generate money for improved 

services in the state institutions in which their 

children resided. Parent-sponsored grassroots activities first coalesced in 1950 with a national initiative that served as a social catalyst at local, state, 

and national levels, to galvanize political change, 

modify public attitudes, and stimulate and support 

professional attention. 

 With the establishment of the President's 

Panel on Mental Retardation in 1961, a new structure was placed on the firm foundation that parent 

groups had effectively laid to combat mental retardation. This was further strengthened by the 

establishment of the President’s Committee on Mental Retardation in 1966. 

Past committee members, acting as singular 

individuals, or in concert with colleagues, focused 

on prevention through biological and environmental 

intervention; developed programs insuring that 

people who are mentally retarded would have access to equal opportunities in education, employment, housing, transportation, and health and social 

services; and fought for the human, civil, and constitutional rights of all citizens who are retarded. To 

promote these activities, they sought advice and 

obtained information from various groups within 

government, from universities, and from concerned 

consumer and professional organizations. 

To meet the challenge of building for the 

future, present committee members carefully 

studied the accomplishments of their predecessors. 

Areas of continued need and problems involved in 

reaching the goals and objectives were identified. 

Recognizing the general lack of public 

understanding about mental retardation, and 

responding to the PCMR mandate for "development and dissemination of such information as will 

tend to reduce the incidence of retardation and 

ameliorate its effects," the Subcommittee on Public 

Awareness was formed. It functions as a clearinghouse for the dissemination of informational 

material generated by other subcommittees. Most 

importantly, it promotes activities that encourage 

interest and participation from the general public. 

To attack the major goal of reducing the occurrence of mental retardation, the Subcommittee 

on Prevention was formed to expand programs of 

previous committees, as well as further efforts in 

providing new solutions. 

The responsibility of ensuring that citizens who 

are mentally retarded have access to equal opportunities in education, employment, housing, 

transportation, health, and social services was 

delegated to the Subcommittee on Family and Community Services. Through commendably hard work, 

the goal of returning people with mental retardation from institutions to their communities has been 

achieved in many areas of the country. However, 

with this accomplishment has come the serious
challenge of providing equal opportunity access 

to facilities and services. A major activity of this 

subcommittee has been to develop a plan dealing 

with these problems. 

Laws and programs affecting people with 

mental retardation emanate from many 

departments of government, including the 

Departments of Health and Human Services, 

Justice, Labor, Housing and Urban Development, 

and Education. A lack of coordination among 

these departments often results in confusion, 

duplication, and poor management. To deal with 

these problems, the Subcommittee on Systems 

Simplification was formed. The first plan the 

subcommittee developed addressed the issue of 

providing living facilities for the people returning 

to their communities from institutions. 

To protect the human, civil, and 

constitutional rights of citizens who are retarded, 

the Subcommittee on Full Citizenship was 

established. This committee's focus centers on 

the civil and constitutional rights of all citizens 

who are retarded, in the same way as we assure 

equal rights for all citizens of this country. 

But the President's Committee on Mental 

Retardation recognizes that our country does not 

exist in isolation from the rest of the world. 

Mental retardation is not our problem alone. It is 

a worldwide problem. To underscore our strong 

convictions on this, we have established the 

Subcommittee on International Activities to 

focus on these concerns. 

The members of the President's Committee 

on Mental Retardation serve as advocates, 

acknowledging the need to identify problems, 

evaluate programs, and participate in appropriate 

educational activities that serve the best interests 

of people who are mentally retarded. This report 

addresses these needs, and demonstrates this 

committee's commitment to implementing the 

objectives of this nation and its President in 

serving the best interests of people who are 

mentally retarded. 

The goal of the Subcommittee on Public 

Awareness is to heighten public awareness about the 

conditions of mental retardation and the needs of our 

special citizens in the areas of prevention, full 

citizenship, community and family living, and 

employment. We believe that only through public 

awareness, and the acceptance of people who are 

mentally retarded, will quality assurance and continuity 

of programs be assured, as well as jobs created, 

education expanded, and prevention efforts 

implemented. 

A LOOK BACK 

Undeniably, parents and relatives have been the 

primary force in developing public awareness programs 

on mental retardation. Parents realized that if they 

joined forces, they could make a difference on behalf of 

all people who are mentally retarded. By working 

together, parents created mutual support systems in a 

dramatically effective pioneering effort that brought the 

issue of mental retardation before the people. Parents 

challenged both the traditional image of mental 

retardation and the concomitant societal rejection and 

discrimination. In the initial Executive Order 

establishing the President's Committee on Mental 

Retardation, one of the functions of the committee was 

"the development of such information, designed for 

dissemination to the general public, as will tend to 

reduce the incidence of mental retardation and 

ameliorate its effect." In the revised Executive Order, 

issued March 28, 1974, this function was expanded to 

provide for "development and dissemination of such 
information." Under this mandate, previous committees have developed and published information 

booklets and reports that have augmented the informational efforts of State and local governments, 

professional organizations, foundations, and other 

private and voluntary organizations. However, we 

believe that there still remains a large 

informational gap about mental retardation at the 

grassroots level of our society. 

A LOOK AT THE PRESENT 

The initial objectives of the Subcommittee on 

Public Awareness were: 

 to encourage increased involvement with 

persons who are retarded by churches in the 

United States; 

 to solicit support of civic organizations and 

youth groups; 

 to develop close ties with the media, including, but not limited to, television, radio, 

newspapers, and magazines, in order to focus on 

the best methods of informing the public of the 

continuing needs of our citizens who are mentally 

retarded; 

 to enlist help of public relations firms, in 

order to form a comprehensive media plan; 

 to develop outside private-sector funding 

sources that would allow us opportunity for implementing a national media campaign; and 

 to seek help from nationally known people 

to provide public service announcements, and 

develop scripts for media shows which focus on 

needs of our citizens who are mentally retarded. 

The Committee Accomplishments: 

The President of Rotary International agreed to let 

us use their theme: “Mankind Is One”. A PCMR 

member hand-delivered a letter to the President of 

Rotary International in Toronto, Canada, in 1983, 

expressing our appreciation, and President Reagan 

commended Rotary International for their 

exemplary work in the field of mental retardation. 

Churches have been contacted, and a stimulus has 

been given to start programs within their respective 

congregations for citizens who are mentally 

retarded. 

Plans have been made for distribution of 

educational public service announcements 

regarding mental retardation. 

Our workers who are mentally retarded stay 

with us and learn their jobs well. It is good 

business to have them. 

Aside from standard mailing to PCMR constituency groups, distribution of the annual report, The 

Mentally Retarded Worker: An Economic Discovery, 

and an attached press release was sent to each of the 

Fortune 500 companies employing more than one 

hundred people. A copy of the report, with a press 

release, was given wide distribution to newspapers, 

radio, and television stations. 

In the fall of 1983, the first Community Forum 

on Employment of Handicapped People was sponsored. It was held in Tucson, Arizona, and directed by 

a member of PCMR. The success of this forum led to 

the development of a manual to guide others in 

preparing forums throughout the country. 

Members of the President's Committee have 

been significantly involved in working with other 

agencies, organizations, and forums in broadcasting 

findings, promoting visibility, and assembling research 

concerning the field of mental retardation. Members 

give speeches; attend meetings, symposiums, and 

forums; and coordinate with a number of groups. 

Committee members have participated in Special 

Olympics events, including the International Winter 

Special Olympics games at Park City, Utah, in 1985. 

Special news bulletins have been arranged for 

disbursement throughout the year, to delineate the 

advances in the field of mental retardation as well 

as document needs. 
An international display has been designed to 

show at conferences on mental retardation. The 

display graphically illustrates the current status and 

future potential of people who are mentally retarded. 

A yearly projection of radio and video public 

service announcements has been pledged, with 

targeted dates of 1984-85. 

We can be winners, too. 

In 1984, we began an annual scholarship for 

advanced graduate study in the field of mental retardation. A private sector donation supported this special 

accomplishment. The objective of the scholarship 

program is to recognize those people who work 

directly with citizens who are mentally retarded, and to 

encourage bright students to embark on careers in 

mental retardation. The first annual scholarship was

awarded to Karin J. Stromswold, who in spite of a 

palsy-related disability, graduated magna cum laude 

and summa cum laude in psychology, and is 

currently a first-year medical student at Harvard 

Medical School. Karin was identified as 

demonstrating the volunteer spirit encouraged by 

this Administration. She worked extensively with 

handicapped students during summers and after 

school. She has been a strong advocate of the rights 

of people who are disabled.

The PCMR scholarship program has continued. This year more than 4000 applicants were 

sent to universities and colleges throughout the nation. Several hundred applications were reviewed in 

the final selection for the 1985 awards. 

Special needs adoption is another vital commitment in this committee. In support of the initiative 

on the adoption of special needs children within the 

Department of Health and Human Services, the 

President's Committee on Mental Retardation is actively represented at weekly and bi-weekly meetings. 

The President's Committee is represented at the 

annual HHS National Adoption Week observance, 

which has a goal to increase public awareness of the 

33,000 children who have special needs, require 

foster care, or who are waiting for a home. 

The Subcommittee on Public Awareness has 

prepared a brief history outlining the memberships 

and accomplishments of past committees. This will 

inform the public of the committee's function, its 

relationship with Federal agency activities, and its 

contributions towards promoting the goals and objectives of the Presidential Orders. 

Karin Stromswold 
LOOKING TO THE FUTURE 

Acceptance of people who are mentally retarded, the success of prevention efforts, and the 

provision of facilities and services that are needed 

are, to a very great degree, dependent upon an informed public. To this end, the Subcommittee on 

Public Awareness is committed to working in concert with the other subcommittees to provide information to the public focused on each of PCMR's 

subcommittees. The Subcommittee on Public 

Awareness is further committed to generating and 

disseminating information that will narrow the informational gap about mental retardation at all 

levels of our society. 

 PLAN FOR PREVENTION 

The President's Committee on Mental Retardation remains 

committed to its primary goal of reducing the occurrence 

of mental retardation. To develop our building plan in this 

area, a study of past prevention efforts yielded a wealth 

of important information regarding the causes of mental 

retardation that had been identified, and the intervention 

strategies that had been employed.

More Than 100 Genetically Determined 

Biochemical Disorders of Metabolism That May Produce 

Mental Retardation in the Unborn Baby Have Been 

Identified. 

To deal with these problems, services have been 

developed to provide genetic counseling for parents; 

screen newborn infants; screen segments of the 

population to identify individuals and couples at risk in 

having affected children; provide prenatal genetic 

diagnosis; and initiate early treatment of affected 

children. 

Neonatal Intensive Care Improves the 

Outlook for High Risk Infants. 

A national network of neonatal intensive care units 

has been established. 

Poor Nutrition for the Baby and Mother Has Been 

Linked to Impaired Brain Development and Reduced 

Intellectual Performance. 

Nutritional programs for mothers and infants have 

been established. 

Specific Pre- and Perinatal Risk Categories Have 

Been Identified, Which Include Teenage 

Pregnancy, Rapidly Consecutive 

Pregnancies, Previous Poor Pregnancy 

Outcome, Food Faddism, Heavy Smoking, 

Alcohol Abuse, Chronic Systemic Disease, and 

Serious Over-Or-Under Weight. 

Many excellent programs of education 

in preparation for parenthood have been 

developed and are being used. 

Heavy Metal Poisoning is a Serious and 

Clearly Preventable Cause of Mental Retardation. 

National educational programs to improve 

the environment have reduced these dangers. 

After the First Critical Months of 

Infancy, Accidents Are the Leading Cause 

of Brain Damage in Children. 

Legislation initiatives were developed by 

many states to pass laws enforcing automotive 

safety seats for infants and children. 

Infections and Immunological Reaction 

During Gestation or in the Baby Are 

Recognized Causes of Brain Damage for 

Infants. 

Immunization programs have 

prevented several thousand infants from 

developing brain damage. 

Drugs Represent Another Source of 

Danger. 

Information programs have been developed 

to bring attention to these problems. 
Even though you've been exposed to 

German Measles, being immunized should 

protect your baby from harm. 

The importance of early infant stimulation, 

mother training, home teaching programs, 

Head Start, and special education in 

ameliorating the effects of mental retardation 

have been emphasized. 

UNDER THE PRESENT 

COMMITTEE, 

PROGRESS HAS CONTINUED 

In June, 1982, during the first meeting of 

the newly appointed members of the President's 

Committee on Mental Retardation, the 

objectives for the committee were defined. 

Prevention was identified as the highest 

priority. 

In September, 1982, a National Prevention 

Showcase and Forum was co-sponsored by 

PCMR and the Atlanta Association for 

Retarded Citizens, Incorporated. The 

proceedings of this conference were collated 

and printed by PCMR. 

The committee approved for printing a 

monograph entitled, "The Role of Institutions 

of Higher Learning in Preventing or 

Minimizing Mental Retardation." 

The development of a model state plan was 

initiated. A preliminary document relating to 

the biomedical aspects of mental retardation for 

this plan has been developed. 

In November, 1983, a conference, "Assessment of the National Efforts to Combat mental 

Retardation from Biomedical Causes," was 

sponsored, and a document reflecting the tone 

of the conference deliberations has been 

completed. 

In May, 1984, a bilingual national open 

forum, "The Prevention of Mental Retardation 

and Focusing on Socio-environmental Causes," 

was held at Boca Raton, Florida, in conjunction 

with the Palm Beach County Association for 

Retarded Citizens, the Florida Atlantic 

University Exceptional Student Education 

Department, and Palm Beach County. A 

document of this conference is also being 

prepared. 

Our committee notes success of educational 

programs, which have resulted in a large number 

of states passing legislation that mandates the use 

of safety seats for infants and children in 

automobiles.

Thanks to the safety seat, I still have a 

healthy baby. 

A coalition on prevention, involving 

advocacy organizations, interested public and 

private groups, medical associations, and PCMR, 

is currently being formed. 

The model state plan is being completed. As 

part of the nationwide prevention effort, a 

meeting has been planned to present this 

information to representatives from all states and 

regions. 

Plans are in progress for a nationwide public 

awareness campaign on prevention which will 

focus on future mothers and fathers. Public 

service announcements and an informational 

pamphlet are being developed. 
If I have a baby, it's good to know what I 

can do to prevent mental retardation. 

A PLAN FOR THE FUTURE 

Mr. President, we share your concern that 

unless active prevention efforts are intensified, 

three-and-one-half million children who are 

retarded will be born by the end of the century. 

This figure will add to the six million citizens 

who are retarded now in this country. Our report 

outlines the complexity of this problem, and the 

progress that has been made identifying and 

implementing prevention strategies. 

We believe that to achieve the goal of 

reducing the occurrence of retardation, the role 

of the Federal government should be to 

implement a plan which would include the 

following: 

a. Use a nationwide, ongoing 

informational program directed toward 

mothers, future mothers, and their 

families. 

b. Encourage and support communitybased prevention programs. 

c. Encourage adoption of state prevention 

plans that will: 

 Identify specific needs; 

 expand public interest; 

 encourage collaboration in the use 

of existing resources; 

 implement strategies for screening 

and immunization programs; and 

 provide support structure for 

community- based programs. 

d. Develop an initiative that would direct 

funding into areas most productive in 

eliminating biological and social or 

environmental causes of mental 

retardation. 

e. Develop and support funding for 

research strategies in the areas of 

biological and environment prevention. 

The President's Committee on Mental 

Retardation believes that its efforts, and the 

work of those who preceded us, provide solid 

groundwork for this important prevention plan. 

We are prepared to proceed in working on this 

monumental task. 

The

and its extensions is one of the most important 

societal values in our American culture. An 

equally important value is ensuring that each 

individual is enabled the maximum opportunity 

to develop to his or her fullest potential as a 

valued, contributing member of society. 

8 

 preservation of the family structure These values are often taken for granted until 

barriers are raised which prevent achieving them. 

People who are mentally retarded have had a long 

history of facing such barriers. They have been 

separated from their families because of a lack of 

adequate family and community support services. 

The lack of these services has also resulted in our 
special citizens being devalued, separated from their 

communities to spend their lives in segregated 

facilities, and denied opportunities to be contributing 

members of society. 

Although great strides have been made to correct these senseless injustices by providing family 

and community support services, much remains to 

be done. The Subcommittee on Family and 

Community Services believes that three major national issues need to be addressed: 

 quality and continuity of services; 

 vocational and employment opportunities 

and 

 dual diagnosis. 

Since its inception, PCMR has recognized the 

importance of family input into the national 

policymaking process, and has continued to strive 

toward providing parents with a national forum. 

PCMR has been responsive to parents and families 

of people who are mentally retarded, by sponsoring 

information and planning conferences and 

publications, which address a wide variety of important topics—such as effective service programs 

in prevention, employment, and deinstitutionalization. Family issues have been an important component of these conferences and reports. For example, in PCMR's 1978 report to the President, 

Mental Retardation: The Leading Edge—Service 

Programs That Work, the committee highlighted 

new directions, "which will richly influence the 

delivery of services to citizens who are mentally 

retarded and their families for years to come," 

including: 

Incentives to Families 

In-Home Service 

Parent Participation Options 

Assistance for Siblings 

Programs for Low Income Families 

Family-Teacher Relationships 

Support the Home First 

Security for Parents 

Parent-to-Parent Peer Relationships 

Consumer Advocacy Systems 

When the newly appointed members of 

PCMR's Subcommittee on Family and Community 

Services first met in June, 1982, they pledged to 

work towards the following goal during its tenure: 

"To enhance the quality of life for individuals 

with mental retardation as they progress from 

family to community, by heightening public 

acceptance, and by influencing the 

provisions of a full continuum of effective 

services." 

In setting out to work on this goal, the committee interviewed parents for their unique 

perspectives, and their assessment of the quality 

and continuity of services which family members 

who are mentally retarded currently receive. The 

"new direction", which PCMR took in 1978, was 

re-examined to see if it was becoming a reality. 

The subcommittee conducted a series of in- depth, unstructured interviews across the country, 

to provide parents with a forum to comment about 

the quality and continuity of services. Thirtyseven parents and caring relatives were 

interviewed. They represented a wide crosssection of individuals, including: a sampling of 

age and sex of the parent or caring relative; age 

and sex of their family member with mental 

retardation; geographic location (regional as well 

as urban and rural); ethnic background; and 

socioeconomic status. 

The interviews demonstrated that parents 

have a unique perspective to offer, and are 

anxious and willing to be heard. The interviews 

also revealed a rich potpourri of parental 

sentiments about the nation's quality and 

continuity of services. Although each person 

interviewed spoke from the vantage point of his or 

her particular family member with mental 

retardation, certain common themes appeared, 

centering primarily around the impact and needs 

of having a family member who is mentally 

retarded, and the need for service improvements. 

QUALITY AND CONTINUITY OF 

SERVICES: THE PARENT PERSPECTIVE 

Diagnosis: When parents first find out that 

their child is mentally retarded, it is a time of great 

emotional upheaval. Universally, the parents who 

were interviewed discussed feeling overwhelmed 

with such emotions as disbelief, guilt, fear, grief, 

anger, confusion, panic, and helplessness. 

Most parents learn of the diagnosis of mental 

retardation from members of the medical profession. Several parents recounted that when they 

needed and wanted a "trusted advisor," their doctor was insensitive and not well informed about 

mental retardation, service options, advances in 

programmatic areas, and support services such as 

9
parent associations. While many parents seemed 

to feel that their doctors responded 

inappropriately at the time of diagnosis, some 

parents acknowledged that the emotional 

upheaval which they were experiencing shrouded 

perception of their doctors in a negative cast. 

Some parents did have doctors who were 

able to associate with the emotional stresses 

which parents experience. In so doing, they were 

able to provide support and information, and 

facilitate linking parents with appropriate outside 

resources. These fortunate parents with 

knowledgeable doctors felt that it made a critical 

difference in their ability to personally cope with, 

and be responsive to, the needs of their child with 

mental retardation. 

Having a doctor who understands mental 

retardation will help us provide the best 

opportunity for our child.

Transition Points: The experience and 

feelings shared by the parents who were 

interviewed revealed that there are other difficult 

times in families' lives, in addition to the time of 

the initial diagnosis of mental retardation. The 

developmental stages in any child's life, and the 

transition points which these stages represent, 

can be stressful to both parent and child. When 

the child is mentally retarded, however, these 

transition points are much more difficult. 

Decisions on the residency of a child with 

mental retardation, especially decisions 

centering around whether the child should 

continue to live at home, were particularly 

problematic for the interviewed parents. 

Regardless of the precipitating factors for 

making a decision about the child's living 

situation, the parents who were interviewed revealed that it is a traumatic period. It is a time 

when there is a great need for reliable and 

complete in- formation about service options, as 

well as outside emotional support. The decision 

is one which impacts on all members of the 

family. 

A common theme expressed by parents was 

that it is critical to find a residential setting which 

will not lead to severed family ties. 

Family Impact: A child with special needs 

has a strong impact on the family unit. The most 

common problems which families seem to 

encounter are: financial difficulties; emotional 

stress; physical drain; resentful siblings who feel 

"left out" or neglected because of the attention 

given to the family member who is mentally 

retarded; the problem of balancing the special 

needs of the child who is mentally retarded with 

the needs of other family members; and 

difficulties in doing "normal family things," such 

as going out to dinner, family outings, and taking 

family vacations. Two severe reactions were the 

burn-out, which results from the awesome and 

overwhelming feeling of responsibility exIt's a good thing we can get help to keep our 

child who is mentally retarded at home.

10
perienced for the family member who is 

retarded, and the aspect of it continuing to be a 

twenty-four hour a day job. Despite these 

difficulties, a common feeling was that having 

a child who is mentally retarded greatly 

enriches the family. 

The interviewed parents agreed that 

good outside support programs make a 

critical difference in family adjustment, and in 

how well the relative with mental retardation 

is integrated into the family. 

Parental Roles: A number of external 

pressures, systems, and authority structures 

exist which make it easy to relinquish parental 

responsibilities. Because of this, it is often 

difficult for parents to maintain a sense of 

parental control and involvement with their 

child who is mentally retarded. Although the 

parents who were interviewed identified these 

factors as problematic, they believed strongly 

that they have a critical role to play in the lives 

of their children, whether they live at home or 

in an outside residence. 

If we unite in our efforts, it will help our children 

who are retarded.

Interestingly, the advocacy role envisioned by 

parents is one of an individual, as well as systemic, 

advocate. 

SERVICE NEEDS AND 

IMPROVEMENTS 

Discrete and systemic gaps: The service gaps 

perceived by interviewed parents varied depending 

upon the age of their child, geographic region in 

which they lived, and whether their child lived at 

home or in an alternative residential setting. The 

various gaps which were identified included: 

 more comprehensive, less expensive, and 

better respite and temporary in-home 

caretaker services; 

 summer camps, after-school, and weekend 

activities; 

 recreational activities; 

 pre-vocational and vocational training; 

 more and improved early intervention services, (including increased use of the 

Montessori method); 

 more speech therapy and general communication skills teaching; and 

 better adult and retirement age services. 

Quality: Interviewed parents unanimously felt 

that continuous and sufficient funding of programs 

and service providers is a key to ensuring the 

quality of services for their children who are 

mentally retarded. An equally essential element of 

high quality services identified by Interviewed 

parents is the service system's responsiveness to the 

particular needs of their child. 

Continuity: In terms of continuity of services 

throughout life, a common theme which emerged 

from those parents who were interviewed was the 

concern about adequate services once their children 

were no longer covered by services under the 

Education for All Handicapped Children Act. In 

addition to the need for some permanence and continuity in the types of services available from year 

to year, the interviewed parents stressed the need 

for day-to-day stability in services. 

Finally, in keeping with a perceived need of 

stability for their children, the parents felt that there 

is a critical need for service providers to be attentive 

to and respond to the special transition difficulties 

which occur when a person who is retarded enters a 

new program or service setting. 

Concerns about the future: While it seemed to 

be a concern foremost on the minds of the older 

parents being interviewed, most parents expressed 

fears about what would happen to their children 

who are mentally retarded when the parents died, or 

were no longer capable of taking care of or overseeing services for their children. 

Parental concerns about their children's needs, 

once the parents have died, centered around two 

major issues: (a) leaving their children with 

sufficient financial resources; and (b) ensuring that 

someone trustworthy is directly responsible for 

providing services for their child. 

With the current trends of deinstitutionalization to community-based services, and legal restric11
tions on new institutional placements, parents are 

concerned that even the option of institutionalization is 

becoming less and less viable. They want some 

tangible assurance that their child who is retarded will 

be provided with a sufficient support system once they 

are no longer in the picture. 

Good care of our child who is mentally retarded 

should not depend on how long we live. 

All of the parent interviews conducted by the 

PCMR Subcommittee on Family and Community 

Services are being condensed into a summary 

videotape that shares the personal sentiments of these 

parents with a variety of audiences. The tape and 

companion report will be distributed widely for 

informational and planning purposes, sent to: State 

and local government agencies with program planning 

and administrative responsibilities; professionals; 

religious and service organizations; and parent and 

consumer groups. 

After reviewing videotapes of the interview, our 

subcommittee members delineated three additional 

issues which we feel need to be addressed: 

 to identify and respond to the needs of persons 

who are mentally retarded within institutions, and 

those who have been deinstitutionalized and have 

no family support system; 

 examine feasible ways in which institutional 

buildings no longer serving persons with mental 

retardation can be utilized; and 

 develop a fixed, identifiable, comprehensive and 

coordinated point which is responsible for services 

to people who are mentally retarded. 

VOCATIONAL AND EMPLOYMENT 

OPPORTUNITIES 

Another activity of the Subcommittee on Family and Community Services has been to follow up 

on the activities initiated by previous PCMR 

members, to address the issue of employment opportunities for people who are mentally retarded. 

During March, 1982, PCMR sponsored the National 

Conference on Employment and Mentally Retarded 

People, in conjunction with the President's Committee on Employment of the Handicapped, and the 

Association for Retarded Citizens of the United 

States. The information generated at that conference 

was highlighted in our 1983 report to the President, 

The Mentally Retarded Worker: An Economic 

Discovery. The report details why the employment 

of adults and youth who are mentally retarded is an 

economic boost to the taxpayer and employer, as 

well as to the worker who is mentally retarded. 

Emerging from the National Conference and 

the PCMR report, is the reminder that comprehensive planning by local communities is a necessary 

ingredient to maximize employment opportunities 

for people who are mentally retarded. With this 

overall theme in mind, the Subcommittee on Family 

and Community Services, on behalf of PCMR, will 

be sponsoring community forums on employment 

of people who are mentally retarded, in concert with 

the President's Committee on Employment of the 

Handicapped and the Association for Retarded 

Citizens of the United States. In this effort to continue both the work and alliance begun by the National Conference, four substantive employment 

issues will be addressed: 

Work Preparation: Identification of the prework instructional needs of persons who are 

mentally retarded. Analysis of the benefits and 

deficits in available education and skill training 

programs, including: special education; vocational 

education and rehabilitation; the Job Training 

Partnership Act programs; sheltered workshops; 

community living programs; community college 

and adult education programs; and private trade or 

on-the-job training programs. 

Work Development: Analysis of the attitudinal 

barriers which serve to minimize the employment 

potential for people who are mentally retarded. Examination of subsidized and special programs 

designed to foster employment. 

12 
Work Procurement: Analysis of the 

opportunities for people who are mentally 

retarded, preparing to enter the work force 

through such alternatives as sheltered 

workshops, work training, and transition 

centers. 

Work Placement: Identification of the 

issues, concerns, and problems in the areas of 

counseling, and job development; and 

recognition of the worker who is mentally 

retarded. The information exchange with 

respect to these work issues will serve as a 

focal point for development of a consensual, 

comprehensive community plan, to implement 

concrete improvements that stimulate 

vocational and employment opportunities for 

the special needs citizen. 

Additionally, the committee has produced 

a document to assist in conducting community 

forums on employment of handicapped people, 

based on a successful forum held in Tucson, 

Arizona. 

Dual Diagnosis 

The third major area of activity of the 

Subcommittee on Family and Community 

Services during the past year has been the issue 

of dual diagnosis. We are concerned about the 

"lost population" of individuals who are both 

emotionally handicapped and mentally 

retarded. 

A BASIS FOR FUTURE PLANS 

Mr. President, based upon the efforts of our 

subcommittee to regain a sense of parents' 

perspectives, we offer the following 

observations: 

It is necessary to expand our nation's 

medical and related health professionals' 

knowledge of mental retardation, and to 

increase their sensitivity to the needs of people 

who are mentally retarded, and to their family 

members. 

Parents are playing critical roles in the lives 

of their children who are mentally retarded, 

and should be encouraged to continue these 

important contributions. 

Although great strides have been made in 

the development of information and referral, 

technical assistance, as well as clearinghouse 

services, parents often lack information and 

knowledge of these resources. 

Parental responsibilities can be eased, and 

the quality of family life can be enhanced, 

through support groups and respite services. 

In addition to parenting roles for their 

individual child, parents should be systemic 

advocates and supportive of one another. 

The quality of services is dependent upon 

stable and sufficient funding; low staff 

turnover, adequate training of service 

personnel, particularly non-professionals; an 

environment which is individualized, positive, 

loving, and staffed with dedicated workers; 

parental involvement and advocacy; and 

external monitors and sanctions. 

Continuity of services is a function of 

ensuring the necessary support services are 

available over the life-span of the person who 

is mentally retarded; maximizing the day-today stability of services; and alleviating the 

trauma of transitions to new services and 

different settings. 

As we have noted, parental concerns are 

widespread about the future of their children 

who are mentally retarded, once the parents 

have died, or are no longer capable of 

providing care. 

The contributions of the members of the 

Subcommittee on Family and Community 

Services, in the areas of quality and continuity 

of services, vocational and employment 

opportunities, and dual diagnosis, are a 

significant beginning to the important work 

which remains to be done. It is our hope and 

expectation that the groundwork laid, combined 

with continued information gathering, will 

provide the necessary data to enable our 

subcommittee to recommend major national 

policy initiatives. 
The work of the President's Committee on 

Mental Retardation has been and will continue 

to be supportive of established national goals, 

which are important to all citizens who are 

mentally retarded, and to their families. The 

committee appointed by this President is 

organized to efficiently meet its mandate to 

advise the President on issues related to mental 

retardation, and to provide effective 

representation for this large and important segment of our population. 

In September, 1982, the Subcommittee on 

Systems Simplification was formed as one part 

of the organizational efforts of the newly 

appointed members of the President's 

Committee on Mental Retardation. The 

subcommittee seeks to accomplish goals 

pursuant to the Executive Order, which 

established PCMR and directs its activities. 

Specific objectives which the Executive 

Order mandates the committee to address are: 

 evaluation of the adequacy of the 

national effort to combat mental 

retardation, followed by 

recommendations to the President; 

 identification of the potentiality of 

Federal programs for achieving 

Presidential goals; and 

 provision of adequate liaison between 

Federal activities and related activities of 

State and local governments, foundations, 

and other private organizations. 

To accomplish these objectives, PCMR 

established liaison with Federal agencies 

serving individuals who are mentally retarded. 

Committee members dealt with the Departments 

of Health and Human Services, Housing and 

Urban Development, Labor, Education, and 

Justice. Liaison also was established with 

selected states; with local public, non-profit, and 

private agencies and organizations and; with 

individuals. PCMR has identified as an 

important national concern questions 

concerning appropriate living arrangements for 

persons who are mentally retarded, and the 

manner in which the government can facilitate 

such placements. 

The Issues 

The Federal government has a stated 

policy of placing persons who are mentally 

retarded in a "least restrictive environment," 

and a further policy of community placement 

or "deinstitutionalization." However, the 

Federal government has not given parents, 

providers, State and local agencies, or other 

interested organizations and individuals, 

precise guidelines on what "least restrictive environment" or "deinstitutionalization" means, 

nor has any comprehensive analysis been made 

of the impact of this policy on the communitybased services systems. 

Presently, about eighty-five percent of 

persons who are mentally retarded living outof-home are housed in public operated and 

financed institutions; fifteen percent in 

community-based facilities. Sponsorship of 

those housed in community facilities should be 

of interest to the Administration, because it 

clearly manifests the local, private initiative. 

Seventy-three percent of local facilities are 

sponsored by private individuals and 

organizations. Only ten percent were sponsored 

by states, one percent by local government, and 

two percent by the Federal government. More 

than half of the community- based group 

homes were started by private individuals with 

a personal interest in the field. 

Reviews of the barriers to implementation 

of group homes by PCMR, and by the General 

Accounting Office, have indicated that 

restrictive zoning or permit requirements at the 

local level thought to be overly restrictive were 

not of great significance. Rather, operators 

reported that Federal and State regulatory and 

licensing procedures create by far the most 

critical problems. 
The Extent of the Problem 

Data regarding the number of individuals 

who are mentally retarded in institutional care 

ready for community placement, in community 

placement, or receiving or requiring services, are 

controversial at best. According to a report 

prepared in May, 1983, by the General 

Accounting Office, there were about 138,600 

persons who are mentally retarded in public 

institutions in the United States in 1980, of which 

about 20,000 could or should be accommodated in 

community-based living facilities. The National 

Association of Retarded Citizens of the United 

States, and the National Institute for Mental 

Health, dispute these figures and indicate a much 

greater need. 

Defining the task of deinstitutionalization, 

the General Accounting Office has further 

indicated that "firm data on the numbers of 

mentally disabled persons in institutions who 

could be better served in group homes were not 

available—some groups believe all (138,600) 

could be better served in group homes." 

Very conservative assumptions regarding 

capital and operating costs for the low estimate of 

relocating 20,000 people indicate this deinstitutionalization effort could require up to one billion 

dollars for facilities, and two hundred million 

dollars per year for services. Programs could cost 

an additional five hundred million dollars per 

year. To fully deinstitutionalize all residents could 

cost ten times that much. These costs could, of 

course, be offset by the savings which would 

result from terminated institutional programs. 

Awareness of the fiscal impact on the country's resources is necessary to understanding the 

other problems attendant to it. It is clear that 

dollars alone are not the answer. In fact, extra 

monies may not be required after the transition is 

accomplished. The answer lies in imaginative 

approaches to solving the problems, and in the 

more efficient and directed use of Federal funds 

and Federal regulatory powers. 

The Role of Group Homes 

The 1980 census indicates that, nationally, 

an estimated 46,000 individuals who are mentally 

disabled, including those with mental retardation, 

resided in an estimated 6,500 group homes, 

slightly over 7 per home average. Although 

precise data is not available, it is thought that onehalf (23,000) of this estimate refers to people 

who are mentally retarded. 

Persons with mental retardation need a place 

to live in the community, too. 

Of these 6,500 residences, approximately 

one percent were established before 1960, ten 

percent between 1960 and 1970, and 68 percent 

since 1970. There is inadequate information on 

the other 21 percent. To implement a 

deinstitutionalization program, simply to house 

the conservative estimate of 20,000 people who 

are appropriate for community placement, would 

require doubling the current total number of 

community-based facilities. 

In terms of funding sources, 57 percent of 

group homes received start-up funds from the 

private sector and 14 percent from charities. Only 

2.2 percent of start-up funding was provided by 

the Department of Housing and Urban 

Development. Other Federal agencies provided 

about 12.5 percent of start-up funds. The 

remaining 14.3 percent came from

miscellaneous sources. 

15 
State Actions 

Several states have begun to deal with the 

issues and the problems of deinstitutionalization in 

a comprehensive way. Many of the states have introduced, or are in the process of introducing, 

legislation to oppose, clarify, or implement 

deinstitutionalization programs. We have heard a 

special concern about the lack of continuity of 

care, and lack of comprehensive treatment plans, 

for individuals as they move to community 

settings. This also seems to be a consistent concern 

of parents, providers, and clients, who identify the 

primary issues as: 

 lack of a comprehensive deinstitutionalization strategy and plan which coordinates 

fiscal resources, programs, personnel, and 

functions; 

 absence of accountability and responsibility; 

 fragmentation of funding; and lack of 

money to develop a continuum of service 

and care programs necessary before removal 

of large numbers of people from institutions. 

A careful review by PCMR indicates that these 

concerns apply to the Federal level of effort as 

well. The General Accounting Office indicates that 

both startup funding and operational funding are 

fragmented and poorly coordinated for local 

facilities. This is evident from the facilities' report 

of their funding sources to the General Accounting 

Office, published in May, 1983. 

Recommendations 

Developing National Policy: In order for the 

Federal government's effort to complement State 

efforts, PCMR recommends that the existing 

policy of deinstitutionalization continue to be 

pursued, but within specific parameters which 

address, on a Federal level, the development of a 

national deinstitutionalization plan. Such a plan 

should include a comprehensive strategy for: 

 funding local facilities where Federal participation in start-up costs is increased, and 

Federal regulations and guidelines for 

facilities are simplified; 

 continuum of treatment services, and a 

continuum of facilities, staff, and programs; 

 restructuring the Federal role to promote, 

regulate, and fund community-based 

facilities, in concert with states, local 

government agencies, private providers, and 

recipients of services and their families. 

If persons with mental retardation are going to be 

deinstitutionalized, we must have ways to care for 

them in local communities. 

Encouraging More Federal Leadership and 

Coordination: There is no immediate need for additional direct intervention by the Federal government, but there is an evident need for a national 

strategy and plan to stimulate the construction of at 

least 500 community-based facilities per year for 

the next ten years. It is recommended that the 

Department of Housing and Urban Development 

be instructed to develop such a strategy and 

prepare the plan. In order to implement this 

approach with a minimum of Federal regulation 

and direct intervention, the following steps are 

suggested: 

 The Departments of Health and Human 

Services and Housing and Urban Development should be instructed to prepare prototypical master specifications and architectural plans and working drawings for 

residential care facilities by region of the 

United States. These proto-typical plans, 

varying by appropriate construction size and 

type, should be developed in cooperation 

with the American Institute of Architects, 

the National Association of Home Builders, 

National Association of Building Officials, 

the Architectural and Transportation 

Barriers Compliance Board, the County 

Supervisors Association, the National 

League of Cities, the National Association 

of Retarded Citizens of the United States, 

the National Association of Private 

Residential Facilities for the Mentally 

Retarded, and other technically competent, 

interested parties. 

16 
• Upon completion, these plans, working 

drawings, and specifications should be made 

available through the Department of 

Housing and Urban Development regional 

offices and other local outlets at nominal 

cost. These proto-typical plans, working 

drawings, and specifications should incorporate uniform building code requirements 

and fire safety code requirements, and 

should be designed to comply fully with 

Federal, State and local building or permit 

requirements. Local facility sponsors, if they 

construct facilities as detailed in these 

documents, automatically will conform to 

Federal, State and local licensing regulations. Inspection and certification could be 

implemented by local building or zoning 

officials. 

Encouraging Private Sector participation: 

Banks and other financial institutions could be 

mandated through appropriate legislation to set 

aside one hundred million dollars per year in low 

interest fixed rate thirty-year loans for those 

facilities. Such loans could be backed by a 

mortgage guarantee program, underwritten by the 

State and Federal government, similar to that 

established for owner occupied housing by the 

FHA. Since about 500,000 units per year are 

funded by FHA, GI, VA, or other subsidized 

ownership policy programs, a prorating of onetenth of a percent of these funds to housing for 

citizens who are mentally retarded should not be 

considered unreasonable. 

Conventional practice sets aside approximately one and one-half percent of each monthly 

debt service payment as a handling fee. A similar 

handling fee could be instituted and charged to 

facility operators based upon the following allocation. One percent or two-thirds of this fee could 

revert to the Federal government as a process fee, 

and one-half of one percent or one-third of the fee 

be placed in an operating set aside account to fund 

the operations of the community facilities operating 

trust authority described below. 

Further, the interest rates for the 

$100,000,000 of funding could be provided by 

institutional lenders at two-thirds the prime rate, 

and the interest earned by them from this section of 

their loan portfolio be taxed as a separate, nonintegrated item of gross income at prevailing 

income tax rates. In addition, or in lieu of this 

write-down, purchase agreements for these loans 

with FNMA, GNMA, FHLB, or other 

Providing incentives to private capital can help 

build for our needs and save government 

resources. 

secondary lenders at current rates, could also be 

structured. 

The rationale for this institutional financial 

program, as far as limiting taxable income, is 

related to the potential cost savings differential 

between institutional care and communitybased care, funded primarily through an 

entitlement program. Although all estimates of 

this differential seem to be arguable, there 

appears to be $20,000 to $30,000 savings per 

capita between the two systems. Whereas the 

above program may result in approximately 

$3,000,000 of taxes foregone, the cost savings 

per client could be $20,000 or more per year, or 

about $60,0000,000 annually, reflecting the 

Administration's mandate to implement net cost 

effective system changes. 

PCMR suggests that the Administration 

create a community facilities operating trust 

authority, composed of a consortium of facility 

operators, assisted by representatives of Federal, 

State and local government. This would then 

provide, through transfer to the authority of 

either the rights of lien under front money 

assignment, or the rights of lien under the 

guarantee programs, powers which would 

enable it as an oversight trust to intervene in 

and, if necessary, take over operations of 

financially insolvent or unstable facilities on 

behalf of the residents. This trust authority, if it 

invokes through judicial action (writ of 

mandamus or other appropriate legal 

mechanism) a takeover of a facility, will operate 

it for a limited period until either of two courses 

of action can be instituted: 

a) orderly relocation of residents to corn17
parable facilities in the immediate vicinity; or 

b) a revitalized operating and functioning facility can be turned over to a new or restructured responsible operating entity. 

Funding for this trust authority could come 

from the aforementioned shares in the handling 

fee, and should be self-sustaining without other 

appropriation. The goal of this trust authority 

would be to provide a semi-automatic 

mechanism, which provides the same continuity 

of care and program as that allowed for in 

publicly financed and operated facilities 

(institutional care). This authority, with its 

oversight ability, should contain the mechanism 

for assuring continuity of services and programs 

in community facilities, which could diffuse one 

of the legitimate major objections of opponents 

to deinstitutionalization. 

Clarifying Existing Regulations: Several 

relatively minor changes in existing regulations 

would permit great strides to be made in 

improved programming within a continuum of 

services for persons who are mentally retarded: 

 Federal agencies could be directed to 

prepare an integrated strategy for persons 

who are mentally retarded for their 

housing, treatment, employment, and 

education, in coordination with states 

and the private sector. 

 The Department of Housing and Urban 

Development could be instructed to 

designate and define small sized 

community care facilities as residential, 

not commercial construction. 

 The Departments of Labor and Housing 

and Urban Development could be 

instructed to develop a waiver of 

provisions of the Davis- Bacon Act, 

where strict enforcement inhibits 

both construction and employment 

goals for handicapped persons. 

 The Department of Education could be 

directed to prepare and publish 

information on the number of persons 

who are mentally retarded presently 

being educated; project annual increases 

and program needs for teachers and 

classrooms servicing students who are 

mentally retarded, as 20,000 institutional residents are transferred into community facilities; and develop a recommended strategy detailing how our 

citizens with mental retardation are to be 

educated under current law. 

 The Department of Labor could be 

directed to prepare and publish 

information on the numbers of persons 

currently employed who are mentally 

retarded; forecast employment goals for 

this population on an annual basis; and 

prepare a 10-year program, strategy plan, 

and budget estimate for employment of a 

targeted population of individuals who 

are mentally retarded. 

As PCMR continues to restructure and 

strengthen itself to more efficiently implement 

the Executive Order, the Subcommittee on 

Systems Simplification, in keeping with this 

effort, has refined its efforts as well. Its 

concentration has been on institutionalization, 

community placement, employment, and 

education. All areas are of vital concern to the 

mental retardation community and to this Administration. We consider the above policy 

recommendations for Federal agencies not only 

to be consistent with the Administration's 

policies, but present them as an exciting 

beginning to solutions for this Administration, 

and for our nation, as we continue to confront 

the problems facing our citizens who are 

mentally retarded. 

18 
The commitment of the American people to 

respect and protect the fundamental rights of its 

citizens is reflected everywhere in our nation. Our 

country thrives on the diversity of its people. Our 

dedication to equality under the law inspires us to 

protect the freedom of all our citizens. When that 

freedom is denied, or threatened for any one 

American, it is a cause for concern for all Americans. 

Yet it is common knowledge that citizens 

who are mentally retarded have long suffered 

extensive discrimination in the exercise of their 

human, civil, and constitutional rights. PCMR has 

been in the forefront of the effort to highlight and 

correct this problem. 

Social factors compound the problems 

created by the systemic denial of these rights. 

Shunned by society, many people who are 

mentally retarded have been forced to live dull, 

unproductive, dependent lives. Too often, 

ignorance and prejudice on the part of others 

create a "self-fulfilling prophecy," which dooms 

persons who are retarded to live far below their 

potential. 

The Injustices 

 As has been recently widely publicized, bias 

on the part of physicians and parents has 

resulted in withholding essential medical 

care and sustenance, solely on a diagnosis of 

mental retardation in some infants, and thus 

denying full citizenship of those infants. 

 Though the right to public education is no 

longer denied to children who are retarded, 

constant monitoring is necessary for their 

education to be effective. 

 The freedom of equal access to education, 

training, employment, social programs, 

transportation, and housing services has 

been denied. 

 Institutional facilities where persons who are 

mentally retarded have been placed have 

failed on too many occasions to provide adequate care and treatment, and have been 

determined in court cases as harmful to these 

citizens. 

 There are too many examples of a shortage 

of good community-based residential 

services for individuals who are retarded. 

 Very few persons who are mentally retarded 

receive any special consideration or 

treatment in our criminal or juvenile justice 

systems. 

 In old age, few citizens who are retarded 

can look forward to the availability of services, security, and comfort that the average 

American enjoys. 

Some Rights Have been Assured 

 Public Law 94-142, the Education for All 

Handicapped Children Act of 1975, assured 

a "free and appropriate public education" for 

all, setting national standards for special 

education and providing funds to implement 

the law. 

 Section 504 of the Rehabilitative Act of 

1973 guarantees citizens who are disabled 

equal access to federally supported education, training, and employment, as well as to 

social, transportation, and housing services. 

 Since 1960, with approximately 15 percent 

of the start-up funds provided by Federal 

agencies, approximately 6,000 group homes 

have been developed, housing an estimated 

46,000 of our citizens who are mentally 

disabled. 

 As a result of efforts of this Administration 

and the Congress, the "Child Abuse, Adoption, and Reform Act" (H.R. 1904), containing provisions that insure full citizenship for 
Life is equally valuable to the person with mental 

retardation. 

infants with disabling conditions, has been 

signed into law. 

Persisting Obstructions to Full Citizenship 

Many school systems still fail to provide appropriate special education services, and although 

this Administration maintains the original regulations and their safeguards, educational abuses continue. Many children who are retarded are still 

educated in schools separated from their "normal" 

peers, and are not provided the opportunity to be in 

the mainstream of education. 

Despite the advances represented by Section 

504, problems plague citizens who are retarded in 

their quest for meaningful employment. As they 

become too old for public education, many sit at 

home with nothing to do. Where vocational training 

is available, it is often conducted in understaffed, 

poorly supported shelter workshops, or day activity 

centers. Competitive employment is difficult to 

obtain, because many employers fail to recognize 

the potential contribution possible with workers 

who are retarded, or fail to provide the necessary 

training and support systems. 

Institutional facilities for children and adults 

who are mentally retarded are still unnecessarily 

restrictive, and are situated in isolated locations. 

Residents are sometimes abused. Most 

community residential facilities have long waiting 

lists, and thus citizens who are retarded have few 

choices. In addition, most of the population who 

are retarded receive inadequate placement 

assistance and support services. In any emergency, 

such as the illness or death of a parent, many 

children and adults who are retarded need shortterm respite care, or placement in some form of 

residential service. Such placement can take 

months to accomplish. 

Being in prison won't help a person with mental 

retardation to learn the difference between right 

and wrong. 

State prisons currently hold approximately 

40,000 inmates who are mentally retarded. Ten to 

fifteen percent of the populations of juvenile correctional facilities are retarded. Very few receive 

recognition in any aspect of the criminal or juvenile 

justice systems. Less than 10 percent of those incarcerated are receiving appropriate treatment. 

Once released, the majority will return to prison. 

Given proper attention, this recidivism rate could 

be reduced drastically. 

A mere handful of senior citizens who are 

retarded can support themselves with pensions, 

returns on investments, and savings. The few support systems that do exist are frequently unduly 

restrictive, confining older citizens who are 

retarded to sometimes expensive, often depressing 

nursing homes or institutions—not because they 

are ill, but because no appropriate services exist for 

them. 

20 
Activities of this Committee 

The Subcommittee on Full Citizenship has 

constantly kept a watchful eye on the laws of this 

country as they relate to mental retardation. We 

applaud the decisions of this Administration in 

maintaining the regulations and safeguards in the 

laws applying to persons who are mentally 

retarded, and the progress that has been made in 

expanding their human, civil, and constitutional 

rights. To fulfill our duty of providing 

recommendations appropriate to the area of mental 

retardation, as mandated in the Executive Order that 

established this committee, the Subcommittee on 

Full Citizenship developed the following resolutions 

which were forwarded to you, Mr. President: 

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 citizens who are 

mentally retarded. Through these laws, the 

way has been cleared for preparing a large 

segment of our society to moving 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. 

BE IT THEREFORE RESOLVED, that all 

persons who are mentally retarded 

including the 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 

persons who are mentally retarded must 

be allowed equal access to medical 

services to preserve their lives, and that 

such a right rules out any practice which 

would not allow persons who are retarded 

their right to life based upon a judgment 

that the quality of life for a person who is 

retarded 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. 

In addition the Subcommittee on Full Citizenship developed policy statements that were subsequently passed unanimously by PCMR. These 

recommendations, to insure that all agencies and 

departments within the Executive Branch move in 

concert with our concept of the President's beliefs, 

are as follows: 

Issue: The Support of Citizens Who are 

Mentally Retarded Within Their Families, 

Neighborhoods and Communities. 

PCMR Policy Statement: It is the policy of 

this Administration that, where possible, adults 

and children who are mentally retarded be 

provided adequate and meaningful opportunities 

to remain with their families, or to return to their 

neighborhoods and communities. 

Requested Federal Action: In pursuing this 

goal, departments and agencies will support persons who are mentally retarded within their 

families and within other community settings. The 

efforts of adults who are mentally retarded seeking 

independent or family residential settings should 

be encouraged. All Federal departments and 

agencies will make or propose whatever changes 

in current law, regulations, or program practices 

which are necessary to accomplish sustained 

community integration of persons of all ages who 

are mentally retarded. 

Issue: The Individual Dignity of Every 

American. 

PCMR Policy Statement: It is the policy of 

this Administration to assure citizens who are 

mentally retarded full, integral membership in 

society, with recognition of their contributions to 

society, and to their families, neighborhoods, and 

communities. 

Requested Federal Action: All Federal 

departments and agencies will review their 

program and employment practices, and make 

whatever changes are necessary to ensure persons 

who are mentally retarded the same individual 

dignity afforded other Americans. By assuring 

citizens who are mentally retarded access and 

treatment under federally supported or regulated 

programs and activities, the Federal government 

will set an example for the nation. 

Issue: The Removal of Barriers to the Social 

21
and Economic Growth and Development 

of Persons Who Are Mentally Retarded. 

PCMR Policy Statement: The 

Administration will promote opportunities for 

the social and economic growth and 

development of each individual. This will free 

citizens who are mentally retarded from 

stereotyped treatment and forced dependency, 

thus permitting them to enter the work force. 

Requested Federal Action: Current laws 

and regulations protect the rights of 

handicapped children to free and appropriate 

public education. Furthermore, these laws and 

regulations protect the rights of handicapped 

children and adults to nondiscrimination under 

federally assisted programs. Such laws and 

regulations will be enforced vigorously by the 

Department of Justice and all other Federal 

departments and agencies. No substantive 

changes will be made in the regulations 

currently in effect under either the Education for 

All Handicapped Children Act, Section 504 of 

the Rehabilitation Act of 1973. The 

Departments of Education, Labor, and Health 

and Human Services will develop and 

recommend to the President new initiatives 

designed to assist states in promoting and 

fostering the successful transition of 

handicapped youth from school to competitive 

employment, or productive life activity. 

These actions were based on input from a 

broad spectrum of concerned citizens from 

across the country. After careful consideration 

by the Subcommittee on Full Citizenship, and 

by the entire membership of the PCMR, this 

information was sent to the President with the 

intention of being of assistance in making 

executive decisions. 

Plans for the Future 

A legal conference sponsored by the 

Department of Education, the Office of Special 

Education and Rehabilitation Services, The 

Resident Home for the Mentally Retarded of 

Hamilton County, Ohio, and by PCMR, was 

conducted to address the issues of social justice, 

fairness, and human rights. The conference will 

generate three major documents: a report to the 

President on the findings; a broad, general 

report for public distribution; and a text exploring current legal issues and trends. 

In addition, there are plans for revised and 

updated versions of earlier PCMR publications 

in the field, namely, The Mentally Retarded and 

the Law and The Retarded Offender. 

The committee will continue to play a 

major role in assisting the American Bar 

Association in drafting their standards on 

criminal justice and mental health, including 

mental retardation. The standards are now in 

draft form, and will be published at a later date. 

These standards will have wide use in the 

criminal justice system. Law enforcement officials, prosecuting and defense attorneys, 

judges, and jailors, as well as probation and 

parole officers, will refer to these standards in 

carrying out their responsibilities. Legislators on 

a national, State, and local level will use them in 

forming legislation. Parents, advocates, and 

mental retardation program personnel will use 

them in their quest for improved support 

services for persons who are mentally retarded 

involved in criminal and civil judicial systems. 

22 
Mental retardation knows no national boundaries in its incidence, nor in its impact, on the 

human condition. Advances in scientific 

knowledge must, therefore, be international in 

their application. Early efforts to teach persons 

who are retarded took place in France, 

Switzerland, Germany, the Scandinavian 

countries, Japan, and the United States. Major 

discoveries in the areas of prevention, the use of 

sheltered workshops for employment, and 

assimilation of persons who are retarded into the 

community, have come from countries 

throughout the world. These innovations have 

been, and must continue to be, shared among all 

nations. 

Recognizing that it would be a serious omission to confine our activities in mental retardation 

solely to efforts within the United States, the Subcommittee on International Activities was formed 

in late 1983. In its first meeting, the mission of the 

committee was identified as follows: the 

attainment of a high and stable level of 

international relations in cooperative resolution of 

the problem of mental retardation, with focus on 

preventing and ameliorating the condition. 

Activities on the International Scene 

After reviewing the international activities 

of previous committees, the following initiatives 

were developed and put into action: 

 In their private travels, members visited innovative programs for people who are 

mentally retarded in several countries of 

the world. A standard letter of introduction 

to foreign governments and international 

organizations was prepared for the use of 

PCMR members on private travel. 

 Members met with UN officials and many 

mental retardation agency directors and 

researchers from other nations. 

 PCMR publications were exhibited at the 

XVI Pan-American Congress on the Child. 

 PCMR has membership on the U.S.Commission for International Youth Year, and 

is working to help insure successful 

implementation of the commission's plan. 

 In association with the Subcommittee on 

Public Awareness, a permanent exhibit 

has been developed to be used at 

international meetings. Displays can be 

modified so that 

Sharing our knowledge about mental 

retardation has helped us all. 

23
the theme of particular meetings will be 

the focus of the exhibit's information. 

 In October, 1984, the President's Committee on Mental Retardation, in association 

with the President's Committee on 

Employment of the Handicapped, cosponsored the International Symposium 

on Mental Retardation in Washington, 

D.C. 

Initiatives for International Participation 

Plans are being made to present highlights 

of PCMR activities at the International League 

for the Scientific Study of Mental Deficiency, to 

be held in New Delhi in 1985. PCMR also hopes 

to provide a significant contribution toward 

strengthening economic and social liaison with 

Caribbean and Latin American countries. 

Attempts are being made to link our activities 

with the work of the U.S. State Department, in 

the preparation and conduct of the Third PanAmerican Congress on Mental Retardation. 

PCMR has agreed to co-sponsor this conference 

in conjunction with the Inter-American Institute 

on the Child of the Organization of American 

States, the International League of Societies for 

Persons with Mental Handicaps, and the 

Argentine government. 

PCMR plans to participate in selected initiatives of the U.S. Commission on International 

Youth Year, as well as the International Decade 

of the Disabled. We encourage U.S. International 

service agencies, e.g., the Peace Corps and the 

Agency for international Development, to 

include information on mental retardation in 

their public information resource materials, and 

in education and training projects. Our liaison 

relations in the field of mental retardation with 

UNICEF, the Pan-American Health 

Organization Institute for the Child, the United 

Nations Center for Social Development, and 

Rehabilitation International, will be continued. 

PCMR plans to update the International 

Directory of Mental Retardation Resources. We 

believe there is no better way of developing 

social and political ties with other countries 

throughout the world, and in particular with our 

Pan-American neighbors, than by sharing 

knowledge with them. In addition, it can bring us 

to a broader perspective, and to new ideas, in 

addressing the problem of mental retardation in 

this country. 

SUMMARY 

Building 

For yesterday is but a dream, 

and tomorrow is only a vision; 

but today well lived, 

makes every yesterday a 

dream of happiness, and 

every tomorrow 

a vision of hope. 

Out of yesterday's dreams of parents and 

relatives came the motivation to unite at the 

grassroots level to initiate needed programs, and to 

sponsor activities that would fill gaps in services. The 

dream that is becoming a reality is the improvement 

in quality of life experienced by family members who 

are mentally retarded. 

This dream began with a cautiously optimistic 

vision of a tomorrow when local, State and national 

leaders would work to effect positive change in 

legislation, public attitude, and professional expertise, encouraging increased sensitivity toward 

citizens who are mentally retarded. From this attitude came the inspiration to push for initiatives that 

would someday guarantee this special population 

their rightful share in the American dream. The 

resulting foundation formed from this familial 

motivation and inspiration proved to be an indispensable ingredient in America's solution to the problem 

of mental retardation; it led to the Executive Order 

establishing the President's Panel on Mental 

Retardation in 1961, and the President's Committee 

on Mental Retardation (PCMR) in 1966. 

The 15th annual report to the President, 

Mental Retardation: Plans for the Future, describes 

the number of ways in which PCMR historically has 

engaged in collaborative activities with other Federal 

agencies, national constituency organizations, 

private sector groups, and individuals, to fulfill its 

Executive mandate. It highlights today's activities in 

the life of the committee—activities which serve as 

building blocks for PCMR's continued achieve-
ment of its objectives in the field of mental 

retardation. 

This report promotes a brighter future for our 

special citizens, who PCMR will continue to faithfully represent by: 

 providing leadership in the national effort to 

reduce the incidence and prevalence of 

mental retardation from environmental, 

sociocultural, biomedical, and multifactorial 

causes; 

 increasing public awareness and involvement 

in the national effort to combat mental 

retardation by continually developing and 

disseminating information which addresses 

effective strategies for preventing mental 

retardation in future generations, and 

ameliorating its effects on individuals already 

so affected; 

 providing guidance and direction to foster the 

establishment and maintenance of programs 

and services in the community that 

encourage and support family continuity; 

 establishing liaison relations with other 

agencies involved in programs and services 

to citizens who are mentally retarded, providing for them the coordinative arm 

necessary to simplify the systems through 

which such programs and services are made 

available and accessible to individuals who 

are mentally retarded, and to their families; 

 executing exemplary advocacy responsibilities to citizens who are retarded by 

seeking regular audience with the President, 

the Secretary of the Department of Health 

and Human Services, relevant cabinet 

members, and with the Congress, and with 

State, and local officials, to "provide advice 

and assistance" regarding effective initiation 

and enforcement of legislation, regulations, 

and public policies needed to guarantee the 

full citizenship rights of individuals who are 

mentally retarded; and 

 engaging in international dialogue and collaborative activities with other countries to 

assure that the United States is abreast of and 

contributing to advancements in the field of 

mental retardation. 

The following specific initiatives have been 

distilled from "plans for the future" described 

in this report: 

 development and wide dissemination of a 

comprehensive model state plan to prevent 

mental retardation; 

 continued collection of information to regain 

a sense of parents' perspectives relative to the 

quality and continuity of services, vocational 

and employment opportunities, and dual 

diagnosis; 

 provision of leadership in the early development of national policy wherein Federal 

government efforts complement State efforts, 

continuing pursuit of deinstitutionalization 

policies, and concentrating increased efforts 

on the vital areas of community placement, 

employment, and education; 

 implementation of a legal summit conference 

to address the issues of social justice, fairness, 

and human rights; 

 revision and updating of earlier PCMR 

publications addressing full citizenship (The 

Mentally Retarded and the Law and The 

Retarded Offender); 

 active participation in the International 

League for the Scientific Study of Mental 

Deficiency to be held in New Delhi, 1985; 

 participation in selected initiatives of the U.S. 

Commission on International Youth Year, as 

well as the International Decade of the 

Disabled; 

 updating the International Directory of Mental Retardation Resources; and 

 co-sponsorship of the Third Pan American 

Congress on Mental Retardation. 

The President's Committee on Mental Retardation believes this annual report to be a significant 

vehicle through which the voice of more than six 

million Americans of all ages who are retarded can 

be heard. The visible support of your office, Mr. 

President, is an indispensable ingredient to what 

the committee believes are viable solutions to the 

major health, educational, economic, and social 

problems experienced by those individuals 

affected by this handicapping condition. Together 

we can be a catalyst to the nation, to reaffirm our 

commitment to prevent mental retardation, where 

possible, and to improve the quality of life 

experienced by this special population of 

Americans. 

25 
Credits: 

Authors: 

PCMR Committee Members 

PCMR Staff 

Robinsue Frohboese 

Mary Z Gray 

Project Director and Assistants: 

Dorothy C. Clark, Project Director 

Elsie Helsel, Ph.D., Vice Chairperson 

Larry Kane 

Lila Thompson 

Editor: 

Lee Christoferson, M.D. 

Assistant Editor: 

Timothy J. O'Brien 

Graphics Design: 

Lee Christoferson, M.D. 

Art Work: 

Gary M. Baune 

Typing: 

Jane Loeffler 

26