The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: Following the rise of community living and tracking individual quality of life outcomes in the '80s, we had a…big surprise in the early 1990s when, some people in New Hampshire had the crazy idea that people, if they had some say over their own life dramas, if they had some input into their own lives and structure and who they lived with and with whom they lived and what they did during the day, what services that got. If they had input, if they had some control over that, that their lives might get better and costs might stay the same or go down. This was, then called self-determination.

That became the zeitgeist, the spirit of the times for entire 1990s and beyond. Self-determination was about the realization that in our community group homes and our group living situations, we didn't really have fulfilling individual determination of what your life is going to be. We didn't have that. The realization that in order to get that would require both person-centered planning AND some control over resources was an insight unmatched in the 1990s, in my opinion. It was called self-determination and it meant that if you took account of the money being spent, you could purchase and design the kind of life you want without professionals telling you what to do, without all that domination from the past. You could begin to at least take part, gradually, slowly, carefully in designing your own life.

This then, self-determination, became the biggest sweep of the 1990s and it redefined quality in a way that included power and control over one's own life. The Robert Wood Johnson Foundation funded the original experiment in New Hampshire, 1993 to '95, and it became so successful so rapidly that Robert Wood Johnson, the largest health care foundation on earth, expanded it to a national program in 1996, gave grants—pretty large grants—to 19 states. In the next year, they gave smaller grants to 10 more states, and the next year, 10 more states put up their own money to try out self-determination with individual budgeting, control of resources, and gradual sharing of power between the professionals and their people and their loved ones, their families, their allies, themselves.

This was the revolution of the 1990s. It continues today, and it is redefining quality in, I think, what may be the final sense, the sense of freedom. Quality can't be defined. It's different for everybody. But it is composed of a few basic building blocks that we all share. Those building blocks are the same for all of us. It's relationships. Having friends, having family, having intimate relationships. It's engagement, having something to do that you care about. A job, something that's enjoyable. If you don't enjoy it, at least you could make money. It's the… the simple things that we all take for granted: Safety, comfort, and individual freedom.

Those things now are becoming more and more free to be defined by each individual, and that's, I think, what quality is evolving into. It's a little bit different for all of us, composed of the same building blocks, but in different mixtures and proportions. What if we allowed people and their closest allies to define the kind of life and the kind of mix of quality things that they want and let them have partial control or total control over the resources that we as a society put up for them? Instead of professionals telling them how to do it, they begin to take control. That's the revolution of the future, and that's where quality is headed.