An essay posted to the Nordic Network on Disability Research blog yesterday provides a glimpse into the future for Americans with disabilities should trends continue toward community-based care and inclusion.
The author of the essay is Magnus Tideman, a professor of disability research at the University of Halmstead in Sweden. About 10 years ago, his country completed the process of dismantling its system of institutional housing for people with disabilities that the United States is just beginning to undertake.
Sweden’s move toward decentralized services and support began with the passage of a 1994 law that “guaranteed good living conditions for persons with disabilities” and that would “increase their levels of participation in society.” The nearly decade-long timeframe in which the change was accomplished serves as a benchmark for states like Virginia and Illinois where thousands of people with disabilities are just now moving into smaller, residential settings. The parallel circumstances become even more evident as Tideman continues looking back:
At the same time that the new legislation was introduced, societal development was dominated by economic problems for the public sector and a New Public Management (NPM)-inspired restructuring of the public sector with, among other things, increased levels of involvement from private enterprise within the areas of schooling, healthcare and disability care…
While Tideman concludes that “there is reason to derive much satisfaction” from the completion of these measures, he argues that the decade since completing the fundamental shift has yielded a zero net-gain in the level of support and services for people with disabilities. Those communities that already had a history of providing a strong level of care are offering more and better opportunities than those that do not have similar traditions. The increasing number of young people being diagnosed with a disability is also impacting outcomes, as Sweden’s school system has struggled to provide the necessary resources to keep up with demand.
A bright spot in the new model, according to Tideman, is the rise in self-advocacy among people with disabilities. As individuals are given more freedoms to make their own choices, they are finding new ways to organize and direct care toward what is important for that particular community of people. Tideman characterizes this development in the language of social justice:
The growth of new forms of activity by and for persons with intellectual disabilities can be interpreted as those persons offering resistance to society’s traditional treatment and means of offering support and service.
Not surprisingly, Tideman is calling for an increase in academic research into the new model. He writes that more than 80% of current studies into the Swedish population of people with disabilities are focusing on medical conditions or behavioral health, while the structures that have created and supported the system under which these people access services remains largely unexamined.
Can Sweden truly say they are making life matter for its people with disabilities? Compiling the data to answer to that question would not only aid Tideman’s country, but countries like our own that are trying to follow in their footsteps.
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Image by mrlins (Stefan Lins), used under its Creative Commons license.