Disabilities center receives $3.75M grant to research effect of policies on families

LAWRENCE -- The Beach Center on Disability at the University of Kansas received a $3.75 million grant from the U.S. Department of Education to study the effects of public policy on families who have children with developmental and emotional-behavioral disabilities.

The highly competitive five-year grant from the Education Department's National Institute on Disability and Rehabilitation Research (NIDRR) ensures the Beach Center's continuous operation as a designated NIDRR research and training center for 20 years.

The focus of the research grant is to study how two federal disabilities policies affect families who have members with disabilities.

The Beach Center is the only research entity in the country that conducts research on the intersection of family life and public policy and that trains doctoral students in that field.

"The ultimate goal of public policy for families is to enhance families' quality of life and ensure their participation in communities of their choice, despite the fact that they have children with disabilities," said Rud Turnbull, Beach Center co-director.

Turnbull, professor of special education at KU, will direct research on a law that guarantees a free appropriate public education for children with disabilities, the Individuals with Disabilities Education Act.

Specifically, the Beach Center will study the effects of a policy that allows schools to place students with disabilities whose behavior is deemed disruptive or threatening into separate schools.

Turnbull said this policy affects how families can help their children be integrated into their communities. "We suspect that segregation in one place produces segregation in all places," he said. "We also believe that families' quality of life rises or falls depending on how society -- the schools in particular -- accommodate their children."

Ann Turnbull, Beach Center co-director and KU professor of special education, will lead research on a policy that will give families direct control over Medicaid funds to which their children with disabilities are entitled under the Social Security Act.

In practice, public agencies designated as Community Developmental Disabilities Organizations in Kansas have had considerable discretion over how families and adults with disabilities spend Medicaid funds.

"This policy has been challenged over the past decade by families and others in the disabilities community, and government policy has responded," Ann Turnbull said.

The Beach Center will determine how this new policy is being exercised by the Community Developmental Disabilities Organizations and the families and individuals they serve.

"By determining just how policy affects families, from the families' perspective, we can affect not just policy itself but also how it is practiced and indeed the research agenda that relates to families, policy and disability," she said.

The Turnbulls were among 36 individuals honored in 1999 by a national consortium that included the American Association on Mental Retardation and six other organizations for changing the course of history for people with mental retardation in the 20th century.

The Beach Center research priorities include access by students with disabilities to the general curriculum, disability policy, family-professional partnerships, family quality of life, positive behavior support, self-determination, the legal and ethical issues arising from the Human Genome Project, and services to deaf-blind students.

The Beach Center is affiliated with the Schiefelbusch Institute for Life Span Studies and the Department of Special Education.

The Beach Center was named for Ross and Marianna Beach in 1988 in honor of their significant roles in advocating for families affected by disabilities in Kansas and throughout the world, especially in South America.