Experiences of families with relatives with intellectual and developmental disabilities in a consumer‐directed support program

Abstract

The current study explores the experiences of families with relatives with intellectual and developmental disabilities participating in a consumer‐directed support program in the USA. The Illinois Home Based Support Services Program provides a limited budget to purchase and manage services. However, within recent years the program has faced cuts and changes. This context provided a rich environment to explore the benefits of the program, as well as oppressive forces creating barriers to the control of financial resources by individuals with disabilities and their families. Financial benefits, benefits from respite and personal assistance services and prevention of undesirable institutional placements were major themes that emerged and triangulated with previous research. The following themes emerged concerning barriers to the control of financial resources: provider and professional control, disability as a deserving group, fraud and abuse perceptions and familism. These themes appear to fit well within a social model of disability applied to the family.

Acknowledgement

This research was partially funded through the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, National Institute on Disability and Rehabilitation Research, grant no. H133B031134. The author is also thankful for guidance and support provided by his advisor, Tamar Heller, dissertation committee, and the Association of University Centers on Disabilities.