People with disabilities design services with self-determination

Over the last couple of decades, there have been two main streams of thought about disabilities.

One, often termed a medical model, focuses on the physical condition of the person with a disability as something that causes disadvantages to the person. This view is often criticized as promoting an image of people with disabilities as disempowered people who need to be fixed. Systems based on this model often prioritize funding for cures and treatment rather than finding ways for the person with a disability to live an independent and fulfilling life.

A second stream of thought is the social model of disability, which asserts that the impairments faced by people with disabilities are ultimately caused by the barriers and prejudices inflicted by society. The social model uses many of the same theories of social justice used by other marginalized groups. Inequalities between people are seen less as an inherent difference than as inequalities of opportunity.

Basic to social models of disability and the disability-rights movement is the concept that people with disabilities are the best experts in what they need. Since the days of institutionalization, paid professionals have generally been the ones to determine the needs and services for people with disabilities, even adults. The systems that serve people with disabilities have become so absurdly complex that no one except trained professionals has any chance of navigating them.

What if our society was to presume that people with disabilities not only know best what they need but may actually be the ones who know best how those needs could be addressed? What if we understood that our systems are impaired instead of the people they were designed for? What would services look like?

For many disability advocates, what this could look like is a system where people with disabilities receive direct payment to purchase the services they need instead of these payments going to several layers of professionals who may or may not be able to supply what is really needed. As citizens of a democracy, people with disabilities would have the same freedoms of choice and control the rest of us take for granted.

A system where the person with the disability controls his or her services actually has the potential to be far more cost-effective than most of our current models of service delivery. But this service model is still rare, and fear about potential abuses often overrides the many advantages.

As funding grows scarcer, government programs that support services to people with disabilities seem to drift further away from models of consumer-direction and control. Cookie-cutter services are cheap in the short term, and limiting access to services and creating waiting lists allows state and federal programs to control their expenditures. Yet in the long run, inequalities increase, people suffer and it is our society that is disabled.

For more information about self-determination or services in Colorado for people with disabilities, contact Community Connections at 259-2464 or visit www.cci-colorado.org.

Tara Kiene is the director of case management with Community Connections Inc.