The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: Part of the revolutionary change in the late '70s that led into the '80s was individual planning. For the first time, people with disabilities in community settings, in schools, in… and in institutions, had to have an individual plan with goals for which people would be accountable.

So everybody had to write down what they expected to get out of the services they were receiving. That was a breakthrough. It's accountability. It's fundamental. It's a good thing. And yet, those individual plans were aimed at professional goals more than individual life quality goals. They were aimed at "I'm a psychologist. I think you should learn to control your behavior better," whereas you, yourself might be saying in your own mind, "You know, I'd really like to get a job and make some money. That'd control my behavior fine." This was the kind of thinking that wasn't quite there yet.

This individualized planning gave way to person-centered planning in the early 1980s, and around that time we were realizing that individuals need to be treated as individuals. This was almost a breakthrough in our thinking. With that came the idea that when we evaluate things like…moving people from institution to community, that we should, heaven forbid, talk to the people themselves.

This was revolutionary at the time. These were people with… 50% of the people who moved out of a place like Pennhurst, did not use verbal language. Should we try to interview them? Well, to make a long story short, in the late '70s and early '80s, the big change that happened in studying these phenomena was we included the people themselves. And I know it sounds silly, but that was ground-breaking. In the '70s, we wouldn't have thought of that. In the '80s, it was… it became commonplace.

Ah, Elinor Gollay was a researcher in the late '70s and early '80s. She wrote a book called Coming Back in which she traced the lives of people who left institutions and came back to communities, and she interviewed a lot of them. Now not everybody can use verbal language, but many could use language boards and nowadays computers, sign language, friends who can interpret what you're saying, so with everything we have, people like me, who did evaluation and research in this field, made it a principle that we have to ask the people themselves.

Oddly enough, that became transformative in itself because now by fiat, we became concerned with satisfaction and life quality and "What do you want?" This was the beginning of a new way of thinking that went beyond the old ways of thinking, in the charity model, the medical domination model, the professional domination model. Now for the first time, in individual planning and in the '80s person-centered planning, we began to learn how to listen to the people themselves.