The Developmental Disabilities Assistance and Bill of Rights Act (DD Act)

When Congress passed in 1963 the Mental Retardation Act, as one might imagine, there were other diagnostic or categorical groups for people with disabilities who were saying, "Well, excuse me. This is great that Congress wants to put money and planning and resources for them," but United Cerebral Palsy was there saying, "Excuse me, it's our turn." Epilepsy Foundation was there saying, "No, it's our turn." Learning Disabilities was there saying, "No, it's our turn." And so everybody wanted in, and there was a lot of jockeying from about '64-'65 till '68-'69.

An important meeting happened at the Hotel Washington in 1969 in the bar – lots of things happen in Washington in the bar – and in that particular meeting, there were representatives from all of these groups including Dr. Boggs, who was still a player, who had been involved on the President's panel and was very involved in Washington on behalf of the Association for Retarded Children.

There was a woman named Dr. Elsie Helsel, who was the legislative affairs person for United Cerebral Palsy Association. Elsie was an educator, Ph.D., ED.D., equally bright, and she had a son with significant disability from cerebral palsy.

So they were both there and folks from the other groups, and the meeting was convened by Senator Edward Kennedy. And he basically said to all of the assembled group, and I think Spina Bifida Association was there – everybody wanted a piece of the pie, and I don't blame them. And he said, "It's not going to happen. One, it makes no sense for us to have an act for every one of these issues. They're duplicative, they're inefficient. We need to figure out how do we bring you all together in a way that makes some sense that we can all live and go forward."

So they kicked it around and literally in the bar, the term developmental disabilities was coined. It is not a clinical term, it is not a diagnostic term, it is not a medical term. It was a political term at that time to create an umbrella around a series of diagnostic conditions that either occurred pre-birth, at birth, shortly after birth, and that would require lifelong services.

So in the first iteration in 1970, it was mental retardation, it was cerebral palsy, it was epilepsy, and it was other similar neurological conditions. And that was the cornerstone of first the term developmental disabilities, so the 1963 Mental Retardation Act was renamed the Developmental Disabilities Act, and a new definition was put in that had these additional categories, which was an attempt to stop the fighting and the turfdom among the different advocacy groups for each of these groups of people with a different medical diagnosis.