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Article
Examining the Experiences and Decisions of Parents/Guardians: Participant Directing the Supports and Services of Adults With Significant Intellectual and Developmental Disabilities
Journal of Disability Policy Studies (2013)
  • Judith MS Gross, University of Kansas
  • Luchara Wallace, Western Michigan University
  • Martha Blue-Banning, University of Kansas
  • Jean Ann Summers, University of Kansas
  • Ann Turnbull, University of Kansas
Abstract

Participant direction is a service delivery model in which the consumer of public benefits, or his or her surrogate decision maker, exercises some level of choice and control over the consumer’s supports and services. In this case study, the authors examined the decisions and experiences of parents/guardians who directed supports and services for an adult with significant intellectual and developmental disabilities (SIDD). Respondents included the parents/guardian of the adult as well as others in the circle of support identified by the parents/guardians. Data analysis revealed an overarching theme in which respondents perceived participant direction as a means to achieve an end, with the end being their desired outcomes for the adult with SIDD. Implications for policy include developing and providing supportive services to adults with SIDD and their parents/guardians due to the increased responsibilities associated with directing supports and services for the adult with a SIDD.

Keywords
  • participant direction,
  • consumer direction,
  • Medicaid home and community-based services,
  • self-direction
Publication Date
July, 2013
Citation Information
Judith MS Gross, Luchara Wallace, Martha Blue-Banning, Jean Ann Summers, et al.. "Examining the Experiences and Decisions of Parents/Guardians: Participant Directing the Supports and Services of Adults With Significant Intellectual and Developmental Disabilities" Journal of Disability Policy Studies Vol. 24 Iss. 2 (2013)
Available at: http://works.bepress.com/luchara_wallace/1/