The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: Our thinking about quality and developmental disabilities can be traced way back in human history. It began with charity and religious models of compassion. And, after that in the 20th century, we moved into a medical model of, supporting and caring for people. In the '70s and '80s, we shifted toward a professional model, but all three models were models of domination. That is, we found out what we thought as professionals or religious figures or doctors what people should have and we gave it to them, and that was quality.

In 1959, Erving Goffman wrote a book, called Asylums, which was about the dominant model of caring for people with major disabilities in those days. And it was called Asylums. And he explained that there were institutions in our culture that very few people knew about called institutions, public institutions for people with what was then called mental retardation. These institutions were designed for total care. That is, you would go there and never return to society. They would take care of all your needs from food to shelter to clothing to everything. And, Goffman showed that existence in such a place can be very bleak. He lived in one himself.

So the definition of quality back at that time, right around the era that John F. Kennedy got, and his family got involved in this field, was… Don't do big institutions. Of course, we did in America. We did institutions for a century and a half. We did them because it was the best we knew how to do. That model of quality was to take people out of the community and put them in a place where all the services and supports we could think of from medical to, habilitation and work training would be supplied all at once. And that idea of centralization and economy of scale turned out to be easily bested by later models of support. Easily.

In fact, in the late '60s, America began to experience, scandals. Television reporters were going into public institutions. The first one was in 1968 in Pennsylvania, WCAU Channel 10 NBC. Bill Baldini went into Pennhurst, a famous institution near Valley Forge, and did five nights of expose of the horrendous conditions there of people with broken bones left untreated. People tied up in their cribs until they were 20 years old. Flies on open wounds. Bathing was not bathing; it was spraying a group of people in a big room with a grate in the middle of the floor. And that was the best America knew how to do then. The overcrowding, the under-staffing, the abuse and neglect is still legendary. You can see that online. You can see the old videos and the exposes that were done.

Five years after that, Geraldo Rivera did the same kind of thing with Willowbrook on Staten Island. And he got cameras in with the help of Robert F. Kennedy and showed that the situation was really un-American. It was against the 8th amendment—cruel and unusual punishment. These were people who did nothing wrong, and yet our notion of quality then was that people wanted to be with people like themselves, that the economy of scale would apply, that we'd…it would be efficient to have them all together, and that people would get everything they need and be protected from society. And, actually, society would be protected from them too. Well, those notions of quality are now long antiquated, and good riddance to them all.