Honoring Eunice Kennedy Shriver's legacy in intellectual disability.

03Original abstract

An entire book needs to be written to do justice to the many achievements of Eunice Kennedy Shriver in philanthropy, public policy leadership, and the International Special Olympics movement. However, my task here is to briefly highlight Mrs. Shriver's most significant and lasting achievements in the field of intellectual disability as they relate to these three spheres of activity. Her striking achievements, spanning more than 50 years, involved formidable challenges and changed the field of intellectual disability forever by advancing human dignity and civil rights, public acceptance, community services, research, health promotion, and the joy and benefits of physical activity and sport.We begin in 1958, a significant year in Eunice Shriver's public life and in intellectual disability history as well. According to the medical historian Edward Shorter (2000), in that year, Joseph P. Kennedy asked his daughter Eunice and her husband Sargent Shriver to take responsibility for the Kennedy Foundation's new program in the prevention of intellectual disability. Imagine Joseph P. Kennedy's pride were he to learn that 50 years after giving this assignment to his daughter, the National Institutes of Health's (NIH) National Institute on Child Health and Human Development (NICHD)—the leading intellectual and developmental disabilities research enterprise in the United States and perhaps the world—would be named in her honor.However, in 1958, what Eunice Shriver encountered in Washington in the field of intellectual disability (then termed mental retardation) was challenging to say the least. The environment was characterized by disinterested bureaucracies in the executive agencies, the judiciary, and, with the notable exceptions of Congressman John Fogarty (Democrat, RI) and Senator Lister Hill, (Democrat, AL), in the U.S. Congress. The late Elizabeth Boggs cofounded the National Association for Retarded Children in 1950 and in 1958 was elected its first female president. Three years later she would be a leading member of President John F. Kennedy's Panel on Mental Retardation. “In the mid 1950's,” she wrote, “NIMH [National Institute of Mental Health] staff [at the National Institutes of Health] privately doubted if as much as $250,000 could be well spent on a subject as unglamorous as mental retardation” (Boggs, 1971, p. 107).The federal presence in intellectual disability had been so modest in the early 1950s that a grant from the Kennedy Foundation of $1.25 million to establish a private school in Illinois exceeded the entire federal budget for intellectual disability services at that time (New York Times, 1952). In 1956, “There was not an identifiable program [for services] in the federal government aimed at meeting the problem of mentally retarded children” (U.S. House of Representatives, 1963). By 1958, total federal support for intellectual disability research was still just $4.3 million annually. It was almost exclusively administered by the National Institutes of Health's NIMH and the National Institute of Neurological, Communicative Disorders and Stroke (NINCDS).However, there would be signs of change. In 1958, then-fledgling Congressman George McGovern of South Dakota sponsored what became Public Law (P.L.) 85-926, the Education of Mentally Retarded Children Act. This statute authorized a modestly funded $1 million training program for teachers of children with intellectual disabilities. The enactment, according to Elizabeth Boggs (1971), responded to the fact that enrollment of children and youth in special education programs had grown nationwide by 150% during the preceding decade. More special education teachers were needed, and they required specialized training. McGovern's legislation was the predecessor of contemporary special education personnel preparation programs. The precedent-setting Education for All Handicapped Children Act of 1975 (P.L. 94-142), the foundation of today's Individuals With Disabilities Education Act (IDEA) as amended, would not become law for another 17 years after McGovern's 1958 legislation.For adults with intellectual disabilities in 1958, federal grant support for services was essentially restricted to the state–federal vocational rehabilitation grant program. That fiscal year, only 1,578 persons with intellectual disability were reported to be rehabilitated (i.e., placed in jobs) under the auspices of that program across the entire nation. This was 2% of the overall rehabilitation caseload in the states for persons with disabilities of all types. In 2006, the rehabilitation caseload of people with intellectual disabilities was 28,602 persons, 14% of the overall disabilities caseload nationally.The U.S. Supreme Court ruled in 1954 in Brown v. Board of Education of Topeka, Kansas that separate educational facilities segregated by race were inherently unequal and violated the 14th Amendment to the U.S. Constitution. In the 1970s, the 14th Amendment's due process provision was interpreted to apply to people with intellectual disabilities who were inappropriately institutionalized in large state-operated facilities (Herr, 1983). However, in 1954, 173,594 people with intellectual disabilities, many of them children, remained separated from children and adults without intellectual disabilities, in poorly funded, state-operated residential “schools” and in state psychiatric institutions across the country (NIMH, 1956). To say that these facilities were spartan would be too kind. Mrs. Shriver wrote in a 1964 Parade Magazine article, after touring institutions, “I have seen sights that will haunt me all my life. If I had not seen them myself, I would never have believed that such conditions could exist in modern America” (pp. 6–7). The “sights” she saw were even more vividly summarized in a moving passage she had written two years earlier for the September 22, 1962, edition of The Saturday Evening Post.In 1967, five long years after The Saturday Evening Post article appeared, Niels Erik Bank-Mikkelsen, national director of Denmark's intellectual disability services programs, toured California's Sonoma State Hospital, which at the time had 3,400 residents with intellectual disabilities. “I couldn't believe my eyes,” he said. “It was worse than I have seen in visits to a dozen countries. In our country, we would not be allowed to treat cattle like that” (National Association for Retarded Children, 1967b, p. 2). The disclosure of these conditions was not a surprise to the field nationally. A year before Bank-Mikkelsen's comment was widely distributed in the media, Professor Burton Blatt, then at Boston University, and photographer Fred Kaplan, published Christmas in Purgatory (1966). An excerpt from this powerful photographic essay on institutional conditions in America was reprinted in Look Magazine (Blatt & Mangel, 1967). The graphic photos stirred national attention.However, very difficult impediments in funding intellectual disability services in the states persisted. “States rights” dominated the landscape of federal–state relations. “The powers not delegated to the United States by the Constitution are reserved to the States respectively or to the people.” So reads the 10th Amendment to the U.S. Constitution, thus relegating virtually exclusive oversight of state-operated intellectual disability institutions to state governments, which had very limited tax bases at the time. To illustrate how fiscally neglected state institutions were in the 1960s, the President's Panel on Mental Retardation stated in its 1962 report to President Kennedy that it was “gratified” to learn that average spending per resident in these facilities advanced from $2.05 per day in 1950 to $4.55 in 1960 (p. 132).State-operated institutions would not begin a steady national decline in their resident populations until after they peaked in 1968, six years after President's Kennedy's panel recommendations were issued. (The resident population of institutions has declined every year since then by between 3% and 6%.) In 1971, federal class action litigation in the states on rights to education and habilitation, stimulated by the advocacy of parents and concerned professionals, provided catalysts for community integration and access to education. Today, 11 states operate residential service delivery systems without reliance on state-operated institutions for people with intellectual disabilities. The vast majority of the 533,000 persons with intellectual disabilities living in supervised “out of home” residential settings nationally, including institutions, now live in community settings with only a few other persons. The 2009 institutional census of state-operated institutional facilities is estimated from projections of 2007 and earlier data to have fallen below 37,000 persons nationally (Braddock, Hemp, & Rizzolo, 2008).Eunice Shriver's most catalytic and lasting contribution to the community integration and institutional reform movement was her leadership in 1961 in championing the creation of the President's Panel on Mental Retardation and in subsequently playing “an active role pressing for ever-increasing vigor in the panel's performance” (Boggs, 1971, p. 113). Shriver insisted that only the finest leaders, scientists, and clinicians be appointed to the panel. Panel members included the aforementioned Elizabeth Boggs and Robert Cooke, pediatrics chair at Johns Hopkins University, Kennedy Foundation scientific adviser, and noted administrator. Cooke had led the call for the creation of an NIH “kiddie institute,” which became the NICHD in 1962. A parent advocate for two children with cri du chat syndrome, he was instrumental in convincing Mrs. Shriver to shift the focus of the Kennedy Foundation from care and treatment to research into causes.Other key panel leaders included Leonard Mayo, chair of the 1950 White House Conference on Children and Youth, who chaired the panel, and George Tarjan, the panel's vice chair, a psychiatrist and superintendent of the Pacific State Hospital in California. In 1959, Tarjan was president of the American Association on Mental Retardation (now the American Association on Intellectual and Developmental Disabilities) and was president of the American Psychiatric Association during 1983–1984.Boggs, who held a doctorate in mathematical chemistry from Cambridge University, was a leader of the panel's Task Force on Coordination as well as vice chair of the Task Force on Law. Boggs later wrote, “The idea of the panel was urged on the president by his sister Eunice Shriver” (Boggs, 1971, p. 112). Donald Stedman and John Throne, directors of the Kennedy Foundation during the early 1960s, both concurred with Boggs' assessment of Eunice Shriver's personal advocacy role with the president to establish the panel (Shorter, 2000, p. 84).After the panel was established, Shriver personally and passionately lobbied her brother, the president, and his capable long-time aide Myer (Mike) Feldman, as only she could, to generate critical presidential support for the panel's 97 recommendations. Although she was not a formal member of the panel, she was the only consultant listed in the panel's final report to the president. Feldman, now deceased, was a brilliant attorney who had also served as an aide to Kennedy in the Senate and would later serve as Kennedy's presidential aide and as counsel to President Lyndon B. Johnson. He became one of Mrs. Shriver's closest friends, and, for many years, Feldman was vice chairman of the board of directors of the International Special Olympics.President Kennedy's October 1961 White House Statement on Mental Retardation, delivered in the Rose Garden, was likely written by Feldman as a call to action, in the president's voice:The panel would have only 11 months to complete its work in time to accommodate the congressional calendar so that recommended legislation might be introduced, enacted, and funded. The panel organized itself into six task forces: Prevention, Education and Habilitation, Law and Public Awareness, Biological Research, Behavioral and Social Research, and Coordination. The panel held public hearings in seven large cities, sought technical assistance from a variety of governmental and nongovernmental sources, and traveled to review facilities in Sweden, Denmark, Holland, England, and the Soviet Union. The panel's final report was officially transmitted to President Kennedy on October 16, 1962, at a White House event held during the top-secret build up of the 1962 Cuban missile crisis. The president made no mention of the unfolding crisis to the panel as he met with them (Boggs, 1971, p. 107).One overarching theme could be identified in the panel's final report, entitled National Action to Combat Mental Retardation: that future services and supports to people with intellectual disabilities should be provided “as close as possible” in community and family settings as opposed to large and remote, state-operated residential institutions. Over 175,000 individuals with intellectual disabilities were institutionalized in large, state-operated intellectual disability residential facilities at the time (U.S. Bureau of the Census, 1975). Many individual facilities had thousands of residents. The Willowbrook State School in New York, for example, reached a peak of approximately 8,000 residents. State-operated psychiatric hospitals for persons with mental illness also housed an additional 37,000 persons with intellectual disabilities nationally in their massive general populations (NIMH, 1961).The President's Panel on Mental Retardation issued 97 recommendations emanating from its six task forces. Many were subsequently embodied in P.L. the and Child Health and Mental Retardation of and in P.L. the Mental Retardation and Mental Health Act. were just a few to the president's in and both were P.L. the fiscal for the federal and health state grant program and authorized special under for and care the of mental by with authorized three programs. million was for the of Mental Retardation with large at authorized of facilities now termed the of in Developmental Disabilities and A community facilities program was also authorized under and million were for of facilities for the and personal care of people with intellectual disabilities (Braddock, The Kennedy Foundation provided the for for the and for the research many of these are named in of Eunice Kennedy Shriver and John F. The United States is in the and of programs. there are including at one in every and intellectual and developmental disabilities research is notable that P.L. legislation also for the first in intellectual disability This was an action it to the of between federal and state institutional conditions and the general of and community residential services in all the The state were the of developmental disabilities in the states subsequently authorized in in the Developmental Disabilities and Act (P.L. That to this The late Senator Kennedy was an of the legislation in the in the federal of the reform of intellectual disability services across the states was for the first time in the The field would never be the The President's Panel on Mental Retardation had been a for the was who was not a formal member of the Eunice Kennedy Her leadership of the panel in the of the President and with the president personally made all the The panel's was a to all its members and to President However, the panel was Eunice Kennedy Shriver's first and lasting in the intellectual disability In she would be with the Public in The Kennedy Shriver never on would many in her in to the to a the from the American Association on Intellectual and Developmental from and other the of from President the of the National Association and the from the of In she the of the from years after the in one of her first she an enterprise that would have an in the field of intellectual and developmental the Special President's Panel on Mental Retardation was in the history of the intellectual disability field in the United However, Eunice Shriver's leadership had only just in intellectual disability. 1968, Special from states and at in By that Mrs. Shriver had for years with key leaders in the field of for people with intellectual disabilities. The included the and the late Professor of Illinois University, and then of the and now a justice on the Illinois Supreme According to the Edward Shorter (2000), Mrs. Shriver first for national of in the United States of mentally retarded children” (p. in in a activity event for children with intellectual disabilities, was first held at the Shriver's in on 1962. Shriver subsequently to additional and, most to at the first national Eunice Kennedy Shriver would a Olympics training program for all mentally retarded children (Shorter, 2000, p. in more than million and million and from would be In many of the Special Olympics is a very program for people with intellectual disabilities. In the years, with Shriver's leadership as executive and Mrs. Shriver's as the the Special Olympics has as the leading and program for people with intellectual disabilities in the Shriver formidable in the for these to be them were the widely held in the early and that people with intellectual disabilities would physical and if they to and that they could not and that they were served in more and like and in and training and as of thousands of Special Olympics by in the country, and then the However, this is another a of the of one who led of Special into the modern and them and their pride to be and active in and Mrs. Shriver's leadership with the Kennedy Foundation and with the president's panel were to on the the Special Kennedy Shriver's personal were just as in her and a key to her achievements in the intellectual disability field and in leadership To her these included a chemistry of nationally and with and a for the role of scientific research on the one with an even of the and of people with intellectual disabilities on the of and were only by her to her to her to the joy of and to The of that be characterized by John that with a is to a of who have only (p. In Eunice Kennedy Shriver's is an Shriver with the of in the of people with intellectual disabilities and their the by action, not do we Eunice Kennedy Shriver's and leadership in the field of intellectual would she to and more in the future if she could do so who her might say that she would that we to support rights and for people with intellectual disabilities and their and that we that there is much to do in the United States and in other to education and health care and to to for and and to more the playing field access to for all people with disabilities & Shriver would also that the in intellectual disability of this and likely the in and on the fact that the majority of people with intellectual disabilities in the are the of of people who live in they are health human rights, and personal Special Olympics are the most nationwide to the of people with intellectual disabilities in these and they have access to the community and government between Special Olympics programs and intellectual nongovernmental such as International and and would of general services and supports for people with intellectual disabilities, and for Special Olympics programs. the of programs and educational community acceptance, and In the in the United by the president's panel in and in the as a for advancing personnel services, community and family support programs, and research in intellectual and developmental is no of to these challenges than to on the challenges Eunice Kennedy Shriver in intellectual disability in the late 1950s in the United United States of then a and in to services and supports for people with intellectual disabilities and their of educational in and the of health care were the not in the The President's Panel on Mental Retardation was the in the the foundation for the five of in the field was in the United Eunice Kennedy Shriver was the moving that just as she has been the and the moving of the Special Olympics challenges to be here in the United even the overall of support for intellectual disability services in However, it is striking how distributed are to and individual of persons with intellectual disabilities are on for community services and family support & of thousands more inappropriately in state-operated institutions and the U.S. Supreme access to community residential services and family support to support staff in community facilities and in family are below the is and (U.S. of Health and Human family support programs only a of funding in the field in programs nationally is and many with intellectual disabilities are still in segregated or separate educational In there is very limited support for intellectual disability research and research as well as for the and of for people with intellectual disabilities (Braddock, Kennedy Shriver stimulated in intellectual disability during her at three and in intellectual disability as a is the President's Panel on Mental Retardation and its catalytic national in residential and community services, and research, education and and the prevention of intellectual disability. The of the of the panel's final report to President Kennedy in the White House will be October 16, should that event and, if to do other to their to program in intellectual of Eunice Kennedy Shriver is her of leadership of the Kennedy Foundation's in research, and public service in intellectual disability. The foundation has been a of for many other in the United States that have its and in the field of intellectual and developmental Shriver's is the International Special Olympics and its to million in in Special Olympics is a leading concerned with intellectual disability in all of these countries. of are in Special health programs, and with three president's panel, the Kennedy and the Special to the field of intellectual disability the The task before now is and a future for people with intellectual disabilities and their than even Eunice Shriver could have during her long and in every country across the in every and she almost all of them during her the to the of Eunice Kennedy

Intellectual and developmental disabilities, 2010 · doi:10.1352/1934-9556-48.1.63