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

The amendments of 1987 were very far reaching. Anecdotally, we were getting reports across the country in spite of moving from mental retardation to developmental disabilities that the State Planning Councils, that the University Affiliated Programs, were primarily, if not exclusively, doing their work targeted to individuals with mental retardation today intellectual disabilities – and all these other people were being left out.

Not from the services, but from the advocacy of the Council, the planning of the Council, the teacher training research of the university affiliated programs, and to some extent the advocacy of the Protection and Advocacy System. Fortunately at that time, I happened to be the director of government relations for United Cerebral Palsy Associations, and we decided to make this a major issue for that reauthorization. And serendipity played a wonderful role. The story is very simple.

Congressman Doug Walgren from Pittsburgh, Pennsylvania was a member of the House subcommittee that had jurisdiction on the reauthorization. He actually knew something about the bill. We talked to the people in Pittsburgh in that particular organization, "Do you have anybody who might be able to testify?"

Somebody maybe he knows, doesn't know, but doesn't matter, but preferably his constituent who can come in and we'll try to get a seat at the hearing as you do in Washington. Again, for people who haven't been to Washington, it's what I call orchestrated theater. Twelve witnesses max at a hearing, we're done. It's not like a state legislative hearing where 200 people can sign up. So you jockey for position.

And we had managed with Doug's help to get a position. And one of his constituents, a mom, Eileen Cabarney, was willing to come in and talk about her son, David, and what was going to happen to him when he graduated from high school and what he had been dealing with in school.

So we worked with Eileen in preparing her testimony. She came in at the hearing. She was on a panel with a couple of other people. And she was representing, frankly, many of the groups outside of mental retardation – United Cerebral Palsy, autism, epilepsy, etc. And so her testimony was really crafted to all those other people who were not getting the benefits that Congress intended, starting in 1970.

So she told David's story. She talked about the significance of his disability. She also made it clear that he was average to above average in intelligence.  She painted a picture of her son – and we did this intentionally – of somebody with very significant disabilities because we knew stereotypes were alive and well, and we did that on purpose.

We wanted them to pay attention to what her story was about. And David had spastic quadriplegia, he had significant communication disorder, but he was doing quite well in school, and she said so. And she talked about what he was he was going to need in support, and he wanted to go to community college, and how none of this was going to be available to him because he wasn't counted as DD.

Nobody was advocating for him, nobody was planning for him, nobody was doing systems change for him, and nobody was training anybody to work with him. So he was going to fall off the end of the earth when he got his high school diploma, and he was going to get a diploma.

So they're listening and they're very interested, and at the very end, she said, "And the reason he's not here is because I didn't want him to play hooky from school today," which was true," but I wanted you to meet him," and then she held up this 11 x 14 color photograph, his high school yearbook photograph. Happened to be one hunk of a young man, and it was a waist-up shot, and he suited in coat and tie, the whole nine yards. 

You couldn't see his wheelchair, and he was sitting pretty well so you couldn't see some of the spasticity. And, I kid you not, every member of that subcommittee instead of falling out of their chair, fell over the dais because they had conjured up an image of who he was, versus who he really was, and we did that intentionally. And they then crafted the amendments, we worked with them. It was a slam dunk. It went to the floor.

When the bill was being introduced, Walgren talked about the amendment. And what this did was force the developmental disabilities planning councils, between '87 and '90 to do two reports, 1) to canvass around the whole state what are the eligibility standards and who's in and who's not, from the DD definition perspective – not from and MR perspective – and then, in addition, to do a consumer satisfaction study – all due by 1990 – using independence, productivity, and integration as the benchmarks to talk with consumers about those who are getting services.

So this began to reshape again two things, one, the population is the population. This isn't just the watered down MR Act, it is a DD Act; but, more importantly that there are serious goals that have to be achieved here, and we expect the councils to take a lead role to achieve them.