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

In 1972, we had an exposé in this country called Willowbrook. A young reporter was put on undercover assignment at this institution, Staten Island in New York, which by everyone's account – I was never there at the time – was really a snake pit. I mean no institution was great, but I understand the squalid conditions, the abuse, the neglect, the lack of hygiene, the lack of nutrition – I mean, you go down the list, we're not talking sophistication – basic health, life, safety was an abomination.

He did this in cahoots with a gentleman named Bernard Carabello, who was a resident, who now has led the self-advocacy movement in New York State for a number of years, a gentleman with cerebral palsy and a lot of physical disability, but probably is intellectually as smart as both of us and maybe smarter. That exposé made the news all over including even in Washington, DC.

So when it came time to reauthorize the DD Act, it was the same Dr. Elizabeth Boggs, who was still on the firing line, and some of her colleagues, who said two things: We have got to have authorities in the states dedicated to addressing and protecting the legal, civil, and human rights of people in institutions. That was the focus. It wasn't about what was going on in the community, but we've got to start someplace. She was appalled, and her son was living in an institution in New Jersey at the time, so she had a stake in this agenda.

Consequently, what went forward in the creation of the Protection and Advocacy System continues to amaze me here in 2010 in that we have an authority with sweeping rights called the Protection and Advocacy System that can address legally and through other methods issues in state government and federal government. Protection and Advocacy system have sued the federal government. They have sued states in federal court using federal taxpayer dollars to protect the rights and advocate on behalf of the rights of individuals with developmental disabilities, initially in the institution, and then as we went forward that began to change. So it was again Elizabeth seizing the moment saying this is not acceptable to anybody, this isn't a partisan issue, this isn't a political issue, this is a human rights issue.

I think she was also smart enough, and I think we were at the right time to benefit from the civil rights era of the mid 60s with the civil rights act and the voting rights act. Here was a civil rights act of the most fundamental, egregious nature for people who although they might not have known them they were upset when they saw those pictures.

And, when the Willowbrook trial went forward, and it did, what we learned is the average per diem for someone living, and I use that term in a very bad way, at Willowbrook a resident, was less than the per diem for the average animal in the Bronx Zoo. That is documented in testimony in federal district court so we can imagine what those conditions were like. We were treating animals in the zoo better than our fellow human beings.

That didn't sit well with anybody. Whether they liked it quietly, or not, nobody could not be ashamed of that. So I think there was a tremendous impetus to do something that otherwise, I am not sure the government would have done, and we have seen in more recent years, legal aid has had its wings clipped pretty significantly in what it can do and what it cannot do, but Protection and Advocacy Authority has grown in the past thirty years in terms of authority, access to records and what they are able to do.

So this was a future oriented concept and I want to give Elizabeth due credit, obviously there were a lot of people who supported it, but it really responded to the egregious conditions of Willowbrook, and then some others popped up after that, but that was on everybody's radar screen and part of being successful in the legislative process is timing. And in this case, the serendipity of the timing, no different than the serendipity of the Kennedy family, came together beautifully to say, "Yes we must do this, these rights can not be turned aside for any of these people." And the P & As began, and they began to do their work.