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Archive for Friday, January 1, 1999

PROGRAM ASSISTS PARENTS OF DISABLED

January 1, 1999

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Increased contact with veteran parents of children with special needs leads to increased satisfaction among parents for whom such a child is a new challenge, researchers found.

Caring for a child with a disability is something parents typically don't consider when planning a family.

And the birth of a son or daughter with disabilities is hard to cope with under the best of circumstances.

New research at Kansas University indicates a program, "Parent-to-Parent," has benefited families by effectively matching veteran parents of children with special needs with parents who have no experience handling disabilities.

The 15 Parent-to-Parent programs in Kansas are coordinated statewide by Families Together in Topeka. The Beach Center on Families and Disability at Kansas University has served as a research partner with Families Together.

Betsy Santelli, director of the Parent-to-Parent projects for the Beach Center, said research results to be published in 1999 by the Journal of Early Intervention showed Parent-to-Parent helped adults be more confident in their ability to assist their child and provided folks with a reliable ally who understood the situation and could offer emotional support and information.

"They must learn about the disability itself and what it means for the individual as well as for the whole family," Santelli said. "They must learn the languages of the medical, legal, financial and special education worlds, and they often must face the loss of their more familiar social supports as relatives and friends distance themselves out of fear or misunderstanding."

It's difficult terrain with no clear map.

"It's like planning a trip," Santelli said. "You study the weather, language, local customs and decide what you want to see when you get there. But midway through the flight you learn the itinerary has been changed and you're going someplace else."

The research was conducted from 1993 to 1996. It tapped 140 parents in Vermont, New Hampshire, North Carolina, South Carolina and Kansas.

Parents were divided into two groups. One group immediately started receiving support from a parent of a child with a disability. Parents in the other group had to wait eight weeks. Four times during the study, both sets of parents filled out a questionnaire measuring their attitudes about their child- and disability-related experiences.

Researchers looked for differences in how parents in the two groups responded.

The researchers discovered that the more contact there was between parents new to the program and their veteran peers, the more satisfaction, Santelli said.

Telephone surveys with 24 sets of parents in the study revealed that the best matches were between parents whose children had similar disabilities. It also helped if the matched parents had similar personalities, outlooks on disabilities, communication styles and thoughts on parenting.

-- Tim Carpenter's phone message number is 832-7155. His e-mail address is tcarpenter@ljworld.com.

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