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The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: Standards of Quality for Institutions

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Jim Conroy: Around the mid '70s when the right to education was first established in America, at the same time, litigation was beginning, to try to address the problems of the horrendous institutions that we had which were so overcrowded. We had about 200,000 Americans in our state institutions around the country. There were 293 of them. And that was…again, I say, the best we knew how to do back in the early part of the 20th century. Segregating and isolating people, that's the best we knew how to do. But now, in the 1970s, we began to see that that was not good. It was not good enough, but it was not good. In fact, it turned out to be horrible. Once people were out of sight of society, they were hidden, they were forgotten, they were under funded, they were understaffed, and conditions became really inhuman.

My first, visit to such a place was as a kid out of college in 1970, and I went to that place called Pennhurst up near Valley Forge, and there were about 3500 people there, and it was really designed for about 700. And I saw things that I can never forget. Anybody who was in one of those settings, you probably never forget it. The kind of conditions that, ah… I drove home crying and, my parents said, "What's the matter?" when I got home, and I said "I just visited a place where we wouldn't put our dog for the weekend but 3500 human beings live there." And those conditions became the focus next in the '70s.

Now that the victory was won, that children could go to public schools, the next thing is what do we do about places like Pennhurst? And there were many places around the country. Ah, they are, again, overcrowded, understaffed, under funded, what do we do? The litigation began with the attorneys like the one I mentioned in Pennsylvania. That spread like wildfire. So here we have lawsuits going on in Minnesota and Colorado and Texas and New Mexico and Pennsylvania.

The first big victory was the first, lawsuit, the granddaddy of they all more or less, in Alabama, and institution named Partlow Center. The case was named Wyatt versus Stickney. And in that, a judge came to the decision that certain standards of quality would have to be obeyed if, Partlow was to remain open. And he set forth 35 standards of quality.

But those standards were legally designed and they were aimed at processes and simple things that you could see and measure. Like the number of staff, square footage allowed to each person, whether or not the place is clean. These were all things about process. They were not things about having a real life.

So in essence, the litigation for institutional reform and institutional improvement, all those lawsuits, resulted in better institutions but they were still institutions. They were still isolated, segregated, bleak, and they really did not give access to the routines and rhythms of everyday American life. They were designed to segregate and to keep people apart from society, and that hurts everybody.

Judge Frank Johnson was the courageous judge who said "This is not good enough" and imposed standards of care, on the Partlow institution, and it took a decade for the state and others and experts from all over the country to try to come into those compliance with those standards.

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This project was supported, in part by grant number 2001MNSCDD-03, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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