The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: The next step in, our thinking about quality for folks with developmental disabilities was really initiated by a gentleman named Wolf Wolfensberger. The name's a mouthful, but he had more of an impact on our field than, any, other people I can think of. In the 1970s he wrote a book called Normalization: The Principle of Normalization in Human Services in which he was the first to set some fundamental human values at the core of everything we thought about in the human services, particularly in the field of what was then called mental retardation.

Normalization was a simple concept. It was misunderstood and misapplied for years and years and years, but at its heart was this simple idea that people with and without disabilities, particularly people who had been excluded from everyday life, should have access to the normal routines and rhythms of American culture. That simple concept. When you take a person and place him in an institution 30 miles from town with 2000 of his closest friends, he does not have access to the routines and rhythms of everyday day life in American culture. That makes that person different. It stigmatizes, it labels, and it segregates.

Wolfensberger was really the pioneer who showed us, that there should and can be a very different way of supporting people, and that way is based on their common humanity and that their needs and wants are just like the rest of us. This was the beginning of a revolution. That Wolfensberger and… and the principle of normalization could not tolerate the idea of institutional segregation. So, beginning in the 1970s and following what I mentioned before about the exposes and the scandals, in the 1970s, we saw an era of litigation based on the thinking that we can do better promulgated by Wolf Wolfensberger. There is a better way, it's not segregation, it's not dehumanization, it's bringing those people and accepting those people and never segregating those people from everyday lives in regular communities.

The big breakthrough in 1972, about the time that Normalization was first published, was in Pennsylvania, the right to education. A young attorney who had a brother in an institution was hired by the Arc, which was then called the Association for Retarded Children, later Association for Retarded Citizens, now just Arc. The Arc hired a young attorney to do something about this terrible institution called Pennhurst, and he recommended to the Arc that there was no basis for suing to close the place or to improve it in the law at the time, but there was a basis to prevent people from going in.

The reason people went to Pennhurst was we didn't have the ability for young people with disabilities to go to public school. That wasn't in existence then. So The Arc with Tom Gilhool sued the State of Pennsylvania for education for everybody. And they won very easily because someone finally discovered that the commonwealth's constitution, the Commonwealth of Pennsylvania said, the Commonwealth is responsible for educating all its children. All? Yes, it says all. And that was it. In 1972, there was a settlement. The right to education was established in Pennsylvania.

By 1975, normalization from Wolfensberger was rampant around the country. People were learning and training and reeducating themselves about the value of a human life. And at the same time, children were for the first time, by law, allowed to go to our public schools in America. Those things happening at the same time in the '70s plus litigation to end institutional segregation really shaped the decade and made us think a lot more about quality.

Quality began to evolve, I think, in the American psyche as having access to what everybody has access to. It's really simple citizenship.