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President Committee on Mental Retardation
Washington, D.C. 20201

JUN 30, 1967

Dear Mr. President:

I have the honor to transmit the first report of the President's Committee on Mental Retardation.

During its first year, the Committee has charted the progress made in our nationwide effort to combat mental retardation and identified directions in which that effort must move in the immediate future in order to maintain its momentum and accomplishment.

This report will be followed by papers describing in detail the state of various aspects of mental retardation programming, and identifying trends and areas in which needs exist and further study is indicated.

The Committee's widely representative citizen membership enabled it to draw upon the information, experience and resource support of government and private organizations in charting fresh approaches to mental retardation needs.

The Committee is deeply grateful for your continuing interest, encouragement and guidance.

Respectfully yours,
John W. Gardner
Chairman

The President
The White House
Washington, D. C.

MR. PRESIDENT:

THIS is a report about six million special Americans for whom -- and for whose families -- our national accomplishment has been great.. . and far too little.

THE six million are the nation's mentally retarded. They are as many as the combined populations of Maine, Oregon, Mississippi, North Dakota, and Wyoming. They are as many people as live in Los Angeles and Chicago together. Their number would make 12 Indianapolises, 24 Wichitas, 48 Winston-Salems.

THESE special Americans are people who are limited in what they can do and understand and achieve.

THEY are slower to learn than most. They have greater difficulty in coping with swift change and life's growing complexity.

BUT they are not helpless or hopeless.

LIFE for them has taken on new promise since Congress, responding to popular and professional call, passed major legislation in their behalf not quite four years ago. Over $400 million a year is now appropriated for federal programs benefiting the retarded. More than twice that amount is spent each year by the states, localities, and private citizen organizations. The result has been an extraordinary growth in the services which the mentally retarded and their families may call upon.

THE ACHIEVEMENT, HOWEVER, IS ONLY A BEGINNING.

AMONG the major needs still facing us are:

o Half of the nation's 25,000 school districts offer no classes for pupils having special learning problems and needs. Many of the existing special education classes do not offer retarded students opportunity to learn and achieve to their full capacity.

o Three-quarters of the nation's 201,000 institutionalized mentally retarded live in buildings 50 years old or more -- many of them "hand-me-down" mental or tuberculosis hospitals or abandoned military installations.

o The 81,000 full-time staff in public facilities for the mentally retarded must be almost doubled to reach minimum adequacy.

o The mentally retarded in disadvantaged neighborhoods often receive significantly less service from public and private agencies than do the retarded living in other neighborhoods.

o An estimated 2 million retarded persons capable of learning to support themselves need job training and placement services. Even at minimum wage, these individuals have a potential annual earning capacity of $6 billion.

o The cause of three in every four cases of mental retardation remains unknown.

OUR PROSPEROUS, OUTREACHING AMERICA MUST CONCERN ITSELF with this group of its least able citizens for practical as well as idealistic reasons.

FIRST, we have learned that problems ignored or neglected do not go away. On the contrary, they grow, both in urgency and cost, until at last we are forced to contend with them, often at enormous expense for measures that can only hold the line.

WE are confident that the causes of mental retardation will be found. Some already have been discovered. When we know more about the causes, we will be able to make significant advances in prevention of retardation.

AND we have learned that the clear-eyed compassion which helps the weak become stronger, the less able to achieve to their full ability, the dependent to become self-reliant is a necessity for people who have important work to do in the world. We Americans are such a people.

FOR the retarded and for ourselves we must continue and improve on the splendid beginnings that we as citizens of a great nation have made in meeting the national problem of mental retardation.

IT IS NEARLY FIVE YEARS SINCE a panel of the nation's leading authorities on mental retardation, appointed by President John F. Kennedy, made the first thorough survey of what was being done for the retarded and what needed to be done. It is now time to assess what has been accomplished since then and to set new goals.

The 1961-62 President's Panel on Mental Retardation made 95 action recommendations that sought progress in four critical areas. The nation, said the panel, could make significant progress against the problem of mental retardation if:

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o We as a nation confronted mental retardation as a major national social, educational, and health problem calling for legal and moral commitment at all levels;

o The problem was exposed to the widest possible citizen awareness, interest, involvement and action, ceasing to be the concern solely of a closed, professional group;

o We took the revolutionary step of treating mental retardation as a problem in national human resources, moving to narrow the research-and-service gap so that prevention programs could be launched and a significant percentage of the mentally retarded made self-sufficient contributing citizens;

o The national concern about the retarded was backed in action by allocation of sufficient money and manpower to make real progress possible in all areas -- research, prevention, planning, and services.

These recommendations were challenges put to the nation by a group of dedicated specialists who knew that the most effective and enduring works in the United States are those undertaken by an informed, aroused citizenry. The recommendations resulted in legislation that attacked the problem through research, professional training, programs of prevention, and state and community planning.

SINCE ITS APPOINTMENT A YEAR AGO, YOUR COMMITTEE ON MENTAL RETARDATION has carried on an intensive effort to learn and evaluate the nation's progress in combating retardation. The Committee has inquired into the status, trends, and needs of programs for the mentally retarded nationally, in the states, and locally. This inquiry has proceeded along several lines:

o A survey that sought to learn the adequacy of present programs from a nationwide sample of 3,000 persons.

o Field interviews with community mental retardation programmers, citizen and volunteer leaders, state planners and coordinators, training and manpower development experts, and residential facility superintendents and staffs. These interviews have been carried out in 15 states across the nation.

o Forum meetings held in the field by the Committee's subcommittee on the state of the nation in mental retardation programs. These meetings have brought Committee members together with state, community, and private agency workers as well as interested citizens for an on-the-scene look at how the needs of the retarded are being met.

o Fact-finding meetings with key staff from the wide range of federal agencies operating programs or interested in the field of mental retardation. (Among these -- and demonstrating the scope of federal involvement -- have been the Department of Labor, Department of Defense, Department of Housing and Urban Development, Office of Economic Opportunity, Civil Service Commission, Veterans Administration, and the National Aeronautics and Space Administration, as well as several Department of Health, Education, and Welfare bureaus.) All federal agencies having programs are reporting data on their activity and experience.

FROM these and other, special studies, we can report that the last five years have seen an historic emergence of mental retardation and the mentally retarded from isolation and public indifference.

MANY factors have contributed to this development, among them major federal involvement in programs for or benefiting the retarded, a reawakening in the states to their own social service needs, and a national information campaign by public and private agencies together to build public awareness and understanding of mental retardation and the mentally retarded.

Major successes include:

o All 50 states (plus the District of Columbia, Puerto Rico, and the Virgin Islands) now have a written plan for providing comprehensive services for the retarded.

o Trained mentally retarded workers are in wide demand in industry and government. Over 3,000 mentally retarded workers are now employed in 39 federal agencies; until 3 years ago, examination procedures barred all such workers from federal employment. Industrial launderers, department stores, motels, and electronic component assembly plants are among the firms reporting success with trained retarded workers.

o Successful state action has brought significant progress in preventing or treating conditions that can lead to retardation. The desirability of testing infants at birth for phenylketonuria (PKU) is now accepted in legislation in 38 states and carried out voluntarily by physicians in several others. Anti-measles campaigns are being conducted in nearly all of the 50 states.

o Funded by $77 million from federal, state, and private sources, twelve mental retardation research centers and 14 university-affiliated training facilities will constitute a beginning network of basic research and training resources in mental retardation for the nation. In addition, the first 89 federally aided community facilities will serve another 10,000 retarded persons.

o Many of the 77,000 mentally retarded children of U.S. armed forces members, long lost in a limbo between national neglect and state residency laws, now are able to receive help through special legislation enacted by Congress.

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o Privately sponsored day care and recreational programs for the retarded are now available in many parts of the nation. Local and state associations for retarded children alone sponsor over 300 day camps and 150 residential camps as well as more than 1,000 other recreational and social group programs.

WHILE these successes have been building, however, long-term national trends have been raising new challenges to which those concerned for the mentally retarded must address themselves.

Soon, for example, ninety percent of Americans will be city-dwellers, their lives shaped daily by mass technologies. . . . Effective and meaningful living requires that the individual obtain more and more formal education. . . . The spiraling growth of the American population -- some 70,000 babies are born each week -- strains the already undermanned teaching and other social service professions to meet even the needs of the normal.

STATE AND LOCAL MENTAL RETARDATION AUTHORITIES ARE CONCERNED about what the galloping complexity and sophistication of American life will mean to the retarded, who have the lowest capability to adapt to swift change. They ask:

o What effect will automation have in the lives of the retarded? Will it take over those jobs which the retarded can now handle? Will it create new jobs for them?

o How can communities be helped to cope with the some 75 percent of the nation's mental retardation that is produced in low income, disadvantaged areas?

o Can the schools develop and utilize special education techniques that will fit the retarded student for social adequacy and economic productivity in tomorrow's society?

o Will enough of the coming years' college and high school graduates see and seize the challenge of building careers in work with the mentally retarded?

o Will the developing comprehensive health program and planning packages include adequate planning and services for the needs of the retarded?

o Can the tide of research and program innovation be kept running strong until it yields the major breakthroughs needed to bring significant reduction in the incidence of mental retardation?

The Committee is investigating and will continue to investigate these and other questions. It is essential, however, to select a few major problems for immediate attention in order to ensure an effective focus and significant result.

MOST URGENTLY IN NEED OF ATTENTION, MR. PRESIDENT, ARE THE FOLLOWING 10 AREAS:

1. Mental retardation services must be available to more of the nation's people.

Particularly, ways must be found to bring these to low income, disadvantaged neighborhoods, both urban and rural.

Community public and private agencies working with the mentally retarded must move swiftly to assure that the retarded in lower income neighborhoods receive the same services as the retarded in other neighborhoods. Provision for the needs of the retarded must be included in the comprehensive "one-stop" community health care programs now being developed. In need of special attention are medical and social measures -- such as parent and child health, family planning, and counseling programs -- that give promise of reducing mental retardation in "high risk" areas now having an above average rate of incidence.

The nation's schools must plan both to improve their special classes for the mentally retarded and -- because it can now be clearly shown that many children become retarded during their school years -- to raise their over-all instructional quality, especially in those schools whose students live in a retardation-fostering environment. Pre-school programs -- such as Project Head Start -- need increased emphasis in this connection.

Private citizen organizations have especially meaningful challenges in these areas. That they have had success in stimulating and building public awareness and services in the field of mental retardation should not blind them to how much remains to be done.

The voluntary agencies are able to express the will and apply the strength of citizens banded together for cooperative action. They should, therefore, take the lead in developing new directions for social services, effective liaison among themselves for comprehensive action, and careful, objective analyses of need and resource to assist state and national legislators in writing pertinent, effective legislation for the mentally retarded.

2. More effective and extensive manpower recruitment and training programs for work with the mentally retarded are needed.

Acute shortages of professional specialists -- especially teachers, therapists, physicians, social workers and nurses -- continue to hamstring programs for the retarded in all parts of the nation.

Careers in work with the retarded must be brought to the attention of the nation's young people. And the incentives -- financial, career developmental, intellectual and prestigious -- that would stimulate youth interest and commitment in such careers need intensive build-up.

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In addition, we must open up new career fields in mental retardation programs.

Trained, professionally recognized supportive workers can take on much of the work now done by physicians, nurses, social workers, psychologists, therapists and administrators. Here, in fact, is the most significant challenge and opportunity in the mental retardation manpower area. In such work, non-college and junior college graduates can meet great need and build satisfying careers.

Broader use of supportive workers in mental retardation programs could also tap major reservoirs of precious human resource that are presently little utilized. For example, students (through such activities as the Student Work Experience and Training program) and elderly persons (through such activities as the Foster Grandparent Program) have created valued places for themselves in work with the retarded. Programs of this kind need major expansion.

If, however, these opportunities are to be seized fully and the field's specialists freed to use their skills to maximum effect, many walls and barriers erected in the name of "professionalism" must be torn down.

Finally, the priceless extras of care and help that community volunteers, both adult and youth, can bring to the mentally retarded in community as well as institutional programs need to be more widely appreciated and called into service.

3. Fuller use of existing resources is a necessity.

The final aim of all programs and services for the mentally retarded is that the retarded individual receive the help he needs at the time and place he needs it. All mental retardation program planners and service-giving staffs, at whatever level, should build and coordinate their efforts to contribute to the efficient realization of that aim. Appropriate incentives -- decision-making authority, opportunity to make and test innovations, and recognition of creative program contributions -- should be given to encourage those planning and conducting services to participate in their steady improvement.

The critical point for coordination of planning and service is the level at which services are given -- the community.

Agency and private organization workers with the retarded must learn how to make skillful, imaginative and full use of the many resources already available to them in their daily community contacts and from state, regional and national sources.

They must also learn to work and think together so that each service they plan and make available for the mentally retarded and their families will join all possible and needed resources in accomplishing its purpose.

Information and citizen involvement are indispensable to success in this area. Governors' advisory groups on mental retardation services and state coordinating bodies should actively promote the formation of voluntary associations on behalf of the retarded in every community (or group of communities) in their states. Each citizen should have access to a directory of state services for the retarded. Particular attention must be given to measures by which the new parents of a retarded child may receive immediate assurance that they are not alone and that there is hope and help for their child and themselves.

Finally, families having mentally retarded children should be informed of and encouraged to make use of the casework, foster care, protection and medical services available through public and private welfare agencies.

Work at the service-giving local level, however, must be backed by effective coordination, cooperation, and leadership at state, regional and national levels. Great improvement could be effected in these areas.

4. More public-private partnerships in program development, services and research are needed.

Such partnerships join citizen initiative and imagination with state and federal resources. They give all levels a stake in the solving of social service problems.

Among possible partnerships in the field of mental retardation; foundation-assisted demonstration projects in disadvantaged areas . . . cooperative labor-industry studies and experimental projects in employment and vocational rehabilitation of the mentally retarded . . . application of industry-developed systems management techniques to the meeting of local and state mental retardation needs . . . cooperative programs for improvement of public library resources in mental retardation materials . . . public grant assistance to voluntary organizations wishing to stimulate innovative services to the mentally retarded ... a cooperative project of government, universities, and technical publishers to translate and make foreign-language mental retardation research and program reports available.

Local and state governments, especially, should promote and enter such partnerships as part of an enlightened public policy to foster long-range growth that is shaped, led and endorsed by the citizens concerned.

5. A national mental retardation information and resource center should be developed.

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The center would serve as a central storage and dissemination point for information on mental retardation and mental retardation programs. It would gather, systematize and furnish information on research, studies, programs and services throughout the nation and in other countries, employing the most up-to-date facilities and techniques for information gathering, storage, evaluation, retrieval, exchange and dissemination.

Consultative services, too, would be made available through the center to mental retardation program planners and leaders at all levels, and to state and community planners of comprehensive health and social services. Also available through this center should be a basic directory that will enable any citizen to locate a contact in his state for mental retardation program and information assistance.

To develop broad national participation, the center might be a public-private partnership, with the federal government, state governments, and private organizations in the mental retardation field assisting in its financing and costs.

6. Basic research, training in application of research, and rapid translation of research results into service program uses need continuing encouragement.

Far too little, even now, is known about mental retardation, its causes, and ways to combat and prevent it.

Biomedical research has been able to identify 25 of every 100 cases of mental retardation as associated with faulty genetic constitution or resulting from virus infections, accidents and diseases before birth or in early infancy. The body processes bringing about mental retardation in the other 75 percent of cases are still unknown, although nutritional, intellectual and cultural-environmental factors are often clearly at work.

Knowledge resulting from scientific research now makes it possible to prevent a tantalizing one to two percent of mental retardation through tests and treatment beginning at or shortly after birth (phenylketonuria and some other conditions in which metabolic disorder can produce retardation) and through immunization (measles).

It is imperative that many more scientists engage in studies in areas (such as biochemistry, physiology, learning) related to or bearing on the field of mental retardation, and that these scientists multiply their own efforts through greatly expanded training activities for scientific researchers and supporting research personnel.

Better and wider use of modern technology (such as automation) will make possible the development of new or more widely applicable techniques for retardation study, treatment, and prevention. For example, automated procedures would enable the genetic study of larger numbers of people and the detection of subtle differences between normal individuals and those whose genetic make-up is such that they are "carriers" of genes associated with retardation. Progress in this area will in turn make genetic counseling more accurate.

A special effort should be made in the study of prenatal life from its cytogenetic and physiological aspects, utilizing all appropriate clinical experience as well as the resource afforded through the National Institutes of Health's primate research centers. Increased knowledge in this area will make prenatal diagnosis and, ultimately, prenatal therapy possible.

Research on factors leading to a higher incidence of mental retardation in low income areas must be expanded and special methods developed for reaching such "high risk" groups through intensive family counseling and planning services.

We also believe it a matter of national urgency that all known successful research findings and program experience applicable in the detection, treatment, and prevention of mental retardation be put to work as widely as possible. Much that is already known is not applied, or is too little utilized.

At the same time, we must end the isolation of the United States from the world field of mental retardation study and action. Our experience and know-how are desperately needed in many parts of the world. Equally great is our need to learn from nations that have built programs for the retarded that are in advance of our own.

Ways of facilitating information and experience exchange among U.S. and foreign researchers and programmers in mental retardation need to be developed. Early exploration should be made, for example, of an international mental retardation information and experience exchange via the scientific, medical, and educational communications satellite channels now on the drawing board. Finally, the federal government, as part of the national commitment to combat mental retardation, should help support basic retardation research and program experimentation in other countries and aid U.S. planners and programmers to study foreign mental retardation programs and problems.

7. Immediate, major attention should be given to early identification and treatment of the mentally retarded.

The majority of children identified as mentally retarded are not discovered until they reach school age.

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By that time, as many as three or four years -- and precisely the years during which the child learns most rapidly -- have been lost during which special programs could have been preparing the child to live usefully with his handicap.

Screening of infants and pre-school-aged children for symptoms of mental retardation (as well as other handicaps) should be part of every community's public health services. School districts should offer special pre-school classes whose purpose is to begin, with the identified retarded child under five years old, the careful course of education and training that will produce a socially competent and economically productive adult.

Instruction in the causes, treatment and social implications of mental retardation should be a part of the curriculum in all schools preparing students for careers in the health or social service fields.

The important role that the clergy often has in family counseling should also be considered in this connection.

In addition, all schools readying students in the health, social service, community organization and related fields must move to make their instruction and training in the techniques of individual, family and group counseling the best possible. They should, indeed, assign as much importance to this area as to their professional subject matter areas.

All medical and social service agencies and facilities should give increased, major attention to measures that will reduce the impact of mental retardation on the family and the community. Such measures include well-baby care programs . . . early psychological screening and biological evaluation of children . . . close and continuing observation of the identified retarded child's growth, development and learning . . . comprehensive, coordinated medical and social services for the retarded . . . counseling and planning aids for the parents of a retarded child. Need for such measures as these was stirringly described in your Spring 1967 Message to Congress on Children and Youth.

8. Social and institutional planning for the coming decades must take into account the special needs of the mentally retarded.

It is estimated that some 2,100 children who are or will become mentally retarded will be born every week in 1968.

Until more ways are found to prevent mental retardation, we must expect that up to three percent of our annual baby population will be or will become mentally retarded.

Facilities and programs for the retarded, therefore, should be considered in the compilation of every state and community development, education and social service plan, as well as in such guidelines as may be developed for federally aided urban development, housing, and comprehensive health, rehabilitation, welfare and education programs. Specialists in mental retardation should be involved in the basic social service planning process.

Simultaneously, renewed attention must be given to public facilities and programs for the five percent of the mentally retarded who require full- or part-time residential care.

These have not kept pace with progress in community activities on behalf of the retarded. Some of the best residential programs represent triumphs of resourceful staffs over cheerless facilities, penny-pinching budgets and general indifference. Many are plainly a disgrace to the nation and to the states that operate them.

The states must meet their responsibility to plan, construct and maintain modern residential facilities for those mentally retarded needing them. They should retain architects to design facilities that will be cheerful to live in as well as promote maximum effective use of staff and other resources, provide sufficient funds to staff and operate the facilities at adequate levels, and integrate the facilities' operation into the over-all state plan for health and welfare services.

9. The legal status of the mentally retarded individual must be clarified and his rights guaranteed.

Studies indicate that no state adequately reflects in its laws what we know of the mentally retarded today. Outmoded classifications 50 or more years old are in common legal use.

The laws applicable to the retarded in most states deny them even the elementary rights of citizenship.

This situation can and must be remedied through forthright action to recognize in state guardianship laws, mandatory education laws, institutionalization procedures and (for retarded offenders) penal regulations, inheritance laws, court and police procedures, and civil rights statutes that the mentally retarded are variously limited individuals whose basic human rights are inalienable.

We particularly commend this question to the action of the legal profession through its national and state associations.

10. Lastly, we urge that everyone interested in helping the mentally retarded and combating retardation give thought to imaginative ideas and approaches that will make new advances possible.

New ideas and approaches are the catalysts that change problems into possibilities. They are needed in every phase of the nation's effort against mental retardation. Among the questions on which bold, original thinking and ideas are needed are the following:

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o What is the cost to the nation of mental retardation? That cost is known to be staggering in terms of service expenditure and undeveloped human resource. Its more precise determination and elaboration in terms of long-term national societal trends is a major planning need.

o With jobs being increasingly designed for people, what kinds of job engineering can and needs to be done for the retarded? What kind of teaching-training techniques need to be designed for use with the retarded to ready them for jobs designed for their particular skills?

o In the increasingly complex city, how shall we at once utilize and protect those mentally retarded who can support themselves in a job but need a form of guardianship in their off-duty hours?

o How shall we plan to serve the mentally retarded among the 10 percent of the U.S. population who will continue to live in small towns and rural areas?

o What will shorter work weeks and more leisure time for Americans generally mean for the retarded? Will there be adequate volunteer help available? What of recreation for the retarded themselves -- what are its undiscovered potentials for bringing the retarded a greater share in the fullness of daily life? How shall we inspire young America to enter this critically important field, both as volunteers and as career workers?

o What job, personnel and career changes and innovations will be necessary to match available skills and resources to the meeting of ever-growing need in the mental retardation field?

o What are the moral and ethical implications of technological findings in the genetics and management of mental retardation? Should a discourse on these subjects be instituted among scientists, philosophers, theologians, social theorists, parents?

The widest possible attention to the problem of mental retardation is a national necessity. The problem affects all parts of American society. The best thinking and action of labor, industry, the professions, and government must be brought to bear on this problem. It is too significant a problem, too tough a challenge to be left to a comparatively few specialists and other interested persons.

MR. PRESIDENT, THIS REPORT PRESENTS ACTION AREAS in which concerted national, state and local effort by public agencies and private, voluntary organizations can produce significant progress in combating mental retardation and lessening its effects. This Committee has in progress a group of special reports which will present specific documentation and recommendations on many of the areas described in general terms in this report. Effective action, however, need not await the compilation of details, but can be taken at every level now on the basis of information already available.

We enlist your aid, Mr. President, in endorsing, the release of this report to the public and in urging action at all levels for a continuing, effective national attack on the problem of mental retardation.