The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: The wave of litigation in the 1970s resulted in quite a few major victories. Judges and courts and settlements, saying that we had to do better as a country, as a nation, and as individual states. We had to do better than isolating people in institutions far from cities and far from home. The standards that were devised by courts were, as I said, process oriented. They were aimed at simple observable things, but not at the real core of what it means to be a member of society in a regular neighborhood. So they were aimed at things that were simple to see, simple to fix, and the… in short, the upshot of that wave of litigation was institutions that had to meet standards and the standards were sometimes very long and very involved and very detailed. The first draft of national standards of the Accreditation Council on Mental Retardation as then it was called, had 540 items in it, and it took many days to apply.

But when you were done with all of those standards and all the accreditation and all the upward movement in institutional quality, when you were done, you still had institutions that were separate and segregated and did not lead to a…a regular life with friends or relationships which we treasure in our own lives.

So, that was a problem. As far as we could come with that chain of thinking—improve the institution—was to get a better institution. And around the same time in the late '70s, we were discovering from cases like Pennhurst that when people left institutions into regular neighborhoods with 24-hour support, whatever they needed, when they did that, their lives blossomed in every way we knew how to measure. So the wave of litigation to improve institutions led to the situation whereas fully accredited institution—Pennhurst was one, by the way—Pennhurst was fully accredited by 1979. The most famous and notorious of institutions was fully accredited by federal standards by 1979, and yet you would not want anybody you loved to live there. Ever.

And that's the paradox of accreditation. Our thinking on quality had gotten as far as "Let's bring some standards in. Let's make sure we have a floor," but the floor was not enough to make a decent life. So here are about 1980, Pennhurst is fully certified, most of the institutions are getting certified by federal standards and other standards, and yet they're still not good places for human beings, particularly to grow up.

One of the first to point out this paradox that you could improve the institution and still not have it be a good place was Burton Blatt of Syracuse, who in the previous decade had done something that really gave ground-breaking courage to the… the television people who did the exposes. Burton Blatt with graduate students had gone into institutions with hidden cameras, and they published, a big threat to governments everywhere, a book of pictures called Christmas in Purgatory. That was the first, in the '60s, to bring to attention of American television and… and other citizens, the conditions that were really unbelievable to most of American, mainstream life.