California Doesn't Broadcast Supportive Services for Disabled Kids; Parents Find Out by Word of Mouth

Study of children with disabilities using personal assistance services

From 1996 to 1998, researchers at the University of California, Los Angeles (UCLA) examined the experience of children served by a California program that provides non-medical, personal assistance services to disabled persons.

For almost 80 percent of enrolled children, the In-Home Supportive Services Program pays a parent to provide these services at home. The study supplemented a federally funded study of adults served by the program.

The UCLA researchers interviewed 126 parents and 32 children. (Most parents were reluctant to let their children be interviewed.) Due primarily to delays in the federal study (with which this study shared research staff), the research team completed very little analysis of the data collected during the grant period.

Key Findings

  • Even in a relatively wealthy state with an active disability movement, most recipients of supportive services discover their eligibility through informal rather than professional sources.
  • The most demanding task for parents designated as the paid provider in the In-Home Supportive Services program is negotiating with medical and educational systems.

Funding

The Robert Wood Johnson Foundation (RWJF) supported the research with a grant of $135,896.

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