PCMR, 1973-1980

"Century of Decision"

On March 28, 1973, President Richard Nixon invited members of the President's Committee on Mental Retardation to the Oval Office for the signing of a new Executive Order, 11776. The committee announced plans to prepare a comprehensive long-range report examining the history of mental retardation in this century, and setting the future agenda for improvement of services for persons with mental retardation. Dr. Henry Cobb, committee member, coordinated the preparation of this major report, assisted by all the members, divided into key subcommittees. The report, "Mental Retardation: Century of Decision," was presented to President Gerald Ford at a meeting on October 11, 1974. President Ford issued a statement at that time, reaffirming our nation's commitment to the field of mental retardation.

The report, "Century of Decision," consisted of a series of five publications, including, "Report to the President," which projected in detail the nation's needs in mental retardation through the Year 2000, and included recommendations on actions to be taken to meet those needs. The other volumes provided background support for these recommendations. The publication, "Mental Retardation: The Known and the Unknown," presented an account of the knowledge of mental retardation up to that time, pointing up the important gaps in knowledge of the causes and treatments of mental retardation, as well as gaps in data relative to mentally retarded persons in the United States. Another document was a historical publication, "Mental Retardation: Past and Present," prepared by Dr. Henry Cobb. Rounding out the series, "Century of Decision" was a report, "Trends of the States in Provisions of Mentally Retarded Persons," and a book, "Mental Retardation and the Year 2000." As a supplement to the series, PCMR also reviewed Federal programs and described the roles of approximately fifty-two of the programs in the provision of services to persons with mental retardation and other disabilities. PCMR defined action to be taken by organizations or agencies with major resources to enable persons with mental retardation and their families to receive needed services.

White House Activities

President Jimmy Carter came into the White House with national awareness of his past actions in the field of mental retardation while serving as Governor of

Georgia. Mrs. Carter had a special interest in the broad areas of mental illness and mental retardation. In April, 1977, Mrs. Carter met at the Department of Health, Education and Welfare with members of the President's Committee on Mental Retardation. Expressing a high level of interest and sense of priority for programs of mental health and mental retardation, she asked for a detailed report on the practical effects of programs of prevention and treatment.

In November of 1977, the committee, through its Chairman and Secretary of HEW, Joseph A. Califano, Jr., sent Mrs. Carter the report, "A Renewed National Commitment for the Mentally Retarded," containing recommendations directed to numerous Federal agencies. The report emphasized the need to avoid unnecessary institutionalization of individuals with mental retardation and highlighted ways to strengthen mental retardation prevention programs through immunization against childhood diseases. In this report, the committee presented recommendations, as well as estimates of the budgetary impact of the committee's recommendations.

That same year, the White House Conference on the Handicapped was conducted in Washington, D.C. Prior to this meeting, each state held conferences and selected delegates. Mental retardation was emphasized by members of PCMR, as well as by the ARC movement. PCMR was represented through the conference, and its recommendations were highlighted in relation to community services, improvement of health care, strengthening of special education for students with mental retardation, and through vocational education and rehabilitation employment programs, which would increase the economic usefulness of most people with mental retardation. The four-volume report of the White House Conference on the the Handicapped was presented to President Carter.

Spotlight on Community Programs

The committee's activities in 1978 included preparation of "Mental Retardation: The Leading Edge, Sevice Programs That Work," a report in further response to Rosalyn Carter's request of the previous year. PCMR members, consultants, and staff prepared a compilation of service programs found to be working effectively. Illustrations in the report portrayed the warm human qualities of the people involved from all parts of the United States. The report provided the country with examples of public education, community services, and employment programs which demonstrated the improvement

that is possible in the quality of life for people who are mentally retarded.

As a supplement to the report's publication, the committee held nationwide press conferences, providing certificates of achievement to those State and community programs that received attention through the report.

The interest of the committee in community services ranged from pre-school programs, special education, vocational training, and workshops, to job placement. The committee conducted quarterly meetings, and the agenda frequently had deliberations on issues and policies related to community and residential services.

In 1979, PCMR planning began under Herbert Cohen, M.D., Vice Chairman, to examine the delivery of community services. The University of Wisconsin was the site for a national conference, "Mental Retardation-1980-Directions for Community Services." Numerous short and long term

strategies were formulated at the conference, attended by State mental retardation commissioners and Developmental Disability Council members and staff.

Prevention

In 1979, the committee extended its survey of "programs that work" to the area of prevention, and reconfirmed the high priority of effective prevention strategies. An international conference on prevention was held with the consultative participation of the committee. It was emphasized that mental retardation is America's number one health problem. The conference papers from participating countries indicated that each year, unless there is an intensified international prevention effort, an ever-increasing number of babies who are mentally retarded would be born in all parts of the world. The risks are not only prevalent in impoverished countries, but also in highly industrialized countries.

The PCMR Subcommittee on Prevention em

with Mrs. Jimmy Carter.

barked on a study to determine the significant features of strategies known to be successful in preventing mental retardation. With the assistance of State and local ARC groups, PCMR toured America in search of health programs and medical projects implementing prevention strategies. The committee conclusions resulting from this intensive study were presented to President Carter in an annual report, "Prevention Strategies That Work". The report highlighted the benefits of bio-medical prevention through genetic counseling, prenatal and intensive care, and immunizations. It further emphasized the importance of environmental controls in preventing mental retardation, placing heavy emphasis on the

multi-factoral conditions of teenage pregnancy, nutrition, and lead poisoning.

While there are numerous existing prevention resources, the committee undertook efforts to heighten public awareness, and to emphasize the need for higher priorities and financing to carry out these effective prevention initiatives. The committee worked actively with the Department of Justice and with the Department of Health and Human Services, in efforts to strengthen the government's role to enable babies with birth defects to live, to be treated for their conditions, and to be assisted through medical treatment toward a healthier future.

PCMR: Into the 1980's

A New Committee

A new committee was formed in the Spring of 1982, with the appointment of twenty-one new committee members. Richard Schweiker, Secretary of the Department of Health and Human Services, chaired the committee, and Dr. Elsie Helsel was appointed Vice Chairperson. In 1985, Dr. Albert L. Anderson succeeded Dr. Helsel. In 1983, Margaret Heckler succeeded Richard Schweiker as Secretary of the Department, and as Chairperson of the PCMR. In 1985, Dr. Otis Bowen succeeded Margaret Heckler. The nation's commitment to mental retardation was reaffirmed in December 1982, when President Ronald Reagan issued Executive Order 12399, in support of PCMR.

Although the committee membership changed, the core subcommittee structure through which it had operated in the past, (Full Citizenship, Prevention, Family and Community Services, and Public Awareness), was retained for continuity and to facilitate maximum national leadership and impact.

In addition to viewing these topics as important, the committee also believed that both Federal and

State systems to provide services for citizens with mental retardation should be re-examined, in order to determine ways in which these systems could be improved. As a result, at its first meeting the new committee established a Subcommittee on Systems Simplification: a) to review Federal and State laws, regulations, and procedures; b) identify significant gaps, overlaps, or service delivery barriers; and c) make major policy recommendations for revising those factors found to make service delivery more complex or costly than necessary. The committee also sought to establish a more issue oriented focus in certain areas.

In March, 1983, Fred Krause, who had served as Executive Director of PCMR since 1972, became ill and was replaced on an acting basis by Acting Executive Director, Dominic Mastrapasqua. Linda Tarr, Ph.D., was appointed as Executive Director in February, 1984. In December, 1984, Jim F. Young became Acting Executive Director. Susan Gleeson, R.N., M.S.N., was appointed Executive Director in July 1985.

Full Citizenship

This subcommittee became active in maintaining a