HONORED MU RESEARCHER CALLS FOR EMPOWERMENT OF PEOPLE WITH DISABILITIES
COLUMBIA, Mo. -- Although there have been recent efforts to improve policies that impact Americans with disabilities, a researcher at the University of Missouri-Columbia says we have a long way to go before the process is perfect. First, public and private agencies need to be guided by the opinions of those who matter most -- those with disabilities.
John Kosciulek, an assistant professor of educational and counseling psychology in the MU College of Education, says his vision for the future is that when policies are made to establish or fund services for people with disabilities, people with disabilities will have real, not token, control in the decision-making process.
In a paper that was chosen by the National Rehabilitation Association to be presented at the prestigious Mary Switzer Memorial Seminar, Kosciulek concludes that people with disabilities are too often denied the opportunity to exercise control over the most basic aspects of daily life. He said they must play a central role in directing the disability policy and rehabilitation service delivery that are central to their empowerment.
In December President Bill Clinton signed the Ticket to Work and Work Incentives Improvement Act of 1999, which he called the most significant milestone for the disabled since the 1990 Americans with Disabilities Act. The new law allows an estimated two million people with disabilities to work without losing health benefits.
This new law is a perfect example of using consumer direction to guide policy development, a philosophy Kosciulek applies to disability policy decision making in his paper. Consumer direction means informed consumers have control over the policies and practices that directly affect their lives.
"Lots of input from people with disabilities went into forming this major legislation, and I think as a result, all of the stakeholders will benefit," Kosciulek said. "States will get incentives to keep people working; agencies will spend fewer public dollars; and people with disabilities will enjoy an increased quality of life."
He said that historically people with disabilities have been segregated or institutionalized and treated with fear and pity. But during the civil rights movement in the 1960s, they started to advocate for their rights, and things have changed incrementally since then, with the biggest boost being the passage of the ADA in 1990.
"(Kosciulek's theory) is a good idea, but it will be difficult to implement," said Peter Dohm, an administrative assistant in the MU College of Engineering. Dohm, 43, was born with a genetic disease called osteogenesis imperfecta, or brittle bone disease, and has had a lifetime of positive and negative experiences with services and policies for people with disabilities.
He said, "You have to be an advocate for yourself. Much of your experience with the system depends on how aggressive you are in learning about your choices." Having served on the boards of private agencies, Dohm said, "Consumers have a lot of ideas that could help agencies stretch their own dollars and benefit everybody."
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EDITOR'S NOTE: A complete copy of Kosciulek's paper is available online at http://www.mswitzer.org/sem99/papers/kosciulek.html.
Contact: Teressa Tignor Gilbreth, Senior Information Specialist, (573) 882-9144, [email protected]
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