The Developmental Disabilities Assistance and Bill of Rights Act (DD Act)
Allan Bergman on the DD Act
Q1: What led President Kennedy to appoint the President’s Panel on Mental Retardation in 1961 and what did it accomplish?
When President Kennedy became President Kennedy, he decided to make mental retardation, then the term, and mental health major issues, not purely in his own right. As many people know, the Kennedy family and he particularly had a sister, Rosemary, about 16 months younger than he was, so he grew up in a household with a young lady with intellectual disabilities. And his sister, Eunice Kennedy Shriver, had become the director of the family foundation, the Joseph P. Kennedy Foundation, which had at its cause célèbre in 1946 research on mental retardation in terms of its cause and prevention but equally so improving the quality of life for individuals living with mental retardation. And it was, in fact, Eunice Kennedy Shriver who insisted to her brother Jack that he take this on as a major initiative. And, in fact, no president before him, no president since him has made intellectual disability/disability a major agenda.
So it was Eunice who was the real impetus that says,"Jack, you must do something." And, as I understand it, she did in her wonderful Massachusetts accent, "Jack, you must do something for the retarded," and he did. In fact, before he even took office in the White House, in his transition team he put folks together, and shortly after he became president, he created the National Institute for Child Health and Human Development at the National Institutes of Health. And its primary purpose was research on the causes, prevention, and treatment of mental retardation, as well as looking at prenatal care and all the other child development issues, and that continues until this day. So that all happened before he actually took office, putting that in place.
By the fall of '61, he had put together, again at Eunice's request, what was called the President's Panel on Mental Retardation. Most of the experts at that time were physicians, were scientists. It had very much a biomedical-medical bent to it, but, in addition, there were a couple of other people who brought a different perspective. One was the late Dr. Elizabeth Boggs, who was the volunteer chair for governmental activities for then the National Association for Retarded Children, now the ARC of the United States. Elizabeth, a very bright nuclear physicist with a Ph.D., who had worked on the Manhattan Project, was also a parent of a son David with significant intellectual disability, multiple disabilities. She was there.
Judge David Bazelon was also there representing in a sense the mental health community. And so the two of them sat with over 20 revered scientists, some working in the area of mental retardation, and they were given a charge by President Kennedy, "You have one year to write a report for me on how to combat mental retardation." And sure enough, one year later – almost never happens in Washington today – they met the deadline, they delivered over 100 recommendations to the President of how to move forward on this issue. And subsequent to receiving that report, and that report is available on the Minnesota Governor's Council website in its entirety. That report laid out a blueprint of many things, both in the biomedical and medical field, but also in the social area and in the community area and clearly declared the future is in the community, not in institutions. Institutions were the dominant force. We need to do a better job of prevention, we need to do a better job of early intervention, and we need to build community capacity.
President Kennedy was bold enough, in February of 1963, a few months after that report, he delivered a special message to Congress exclusively on the topic of this report, which really gave it status, and I believe it was serendipitous that he was elected, he had had a sister with mental retardation, that his sister had become a staunch advocate, and she really pushed him to take this on as a cause célèbre, and that report became the impetus for legislation in the fall of '63. Two years from the time the panel was appointed to a piece of legislation – that's almost unheard of today – and we got the Mental Retardation Services and Facilities Construction Act, and it had as its core principle to build within universities research, treatment, diagnostic centers with a vision that these would become the hub of the future community service system. That was the plan, that was the hope, that was the aspiration, and there was some planning money for states to sort of look at what they were doing and what they needed to do.
Unfortunately, that dream never got fulfilled because shortly thereafter and after his assassination and President Johnson came in, who honored the commitment, there was another war going on called the Vietnam Conflict, and that began to be a resource redirection, and so the millions that were going to be necessary to do this comprehensive system with research and training and services never happened, and eventually things began to change – and we will talk about those – but this laid the cornerstone for one, research, training, housing in universities for leadership training and research, and, most importantly, a declaration that the future was in the community and not in the institution.