The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: The challenge for the future is for systems to absorb and make real these changes in the way we're thinking about quality, and that is not entirely easy. We have 150 years of accreditations, licensing, inspection, quality assurance, and those methods are aimed at programs and provider agencies and services.

But now, we all want to think about quality as an individual item defined by the person and the kind of life they envision. How does the state come to grips with that and monitor that sort of thing? I've been saying for a long time and I truly believe that in this century with the technology we have, we will learn to make our human services accountable for individual quality of life. It's easy to measure if you've got 200 people in a provider agency, you can measure all of their qualities of life in a couple hours once a year and see if they're improving, increasing, if they're where they want to be, if they're unhappy about things.

This is the individual outcome accountability that I think is the challenge for states. Can states do this? It's probably a generational issue. Some states are beginning: Michigan, Minnesota, Pennsylvania. We've begun to do monitoring that's really based on individual qualities of life. Like choice making, independence, productivity, inclusion, integration, opportunities for activities, freedom, what you do for work, income.

Income is not limited just to work, but income can be produced by self-employment. These are new things, and these are the dimensions of outcome and quality that can be defined by individuals. The challenge for states, and I don't think it's technologically hard, it's just hard to change the culture. States have to begin to think of monitoring and quality assurance and quality programs in terms of taking from the individual upward, rather than from facilities downward.