The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: How did we learn…what quality is in a new way in the '80s, and the answer, I think, is that we began to do studies of what happens to people when they left segregated situations and went into more inclusive integrated situations.

And the biggest one of those examples is, of course, the movement from institution to community, and the biggest study done in the '80s and, one of the biggest ever done was called the Pennhurst Longitudinal Study. And it was done in Pennsylvania, and it was the first of its kind to try to measure what happens to quality of life for folks when they move out of a big institution and back into regular neighborhoods, homes, houses, apartments, but all with 24-hour staff and whatever folks need.

And everybody who came out of Pennhurst had something to do every day, five days a week, so they wouldn't just rot in that little mini institution in the community. They actually were kept engaged and busy, and that was terribly important. But it was those years when we began to study, the impacts of movement from institution to community that we learned more and more about quality. And we asked people more and more what they wanted out of life.

In those years, the studies that were done emphasized things like growth in independent function as a measure of quality. Terribly important. And that was really the breakthrough indicator in those days, that people when they left institution began to do more and more for themselves and needed less and less help. Terrific. So what anybody wants, it's part of self-actualization, is to learn to do for yourself instead of being dependent.

So independence was great one in those years and it was those research projects, asking the individuals themselves, the Pennhurst Study later replicated in 25 other states that led us to understand that individual outcomes, measuring quality of life. These were all things that were possible.