“It's Like Two Roles We're Playing”: Parent Perspectives on Navigating Self-Directed Service Programs with Adult Children with Intellectual and/or Developmental Disabilities

Abstract

Publicly funded self-directed budgets for purchasing community-based long-term services and supports for people with intellectual and/or developmental disabilities (IDD) have become a wide-spread service model in the United States and internationally. The current study aims to understand parents' experiences in navigating self-directed support programs with their adult child with IDD. We utilized qualitative content analysis of interviews with 26 parents of adult children with IDD enrolled in self-directed budget programs in five U.S. states. Twenty-four parents reported numerous programmatic barriers to person-centered supports falling within three thematic areas: administrative issues, budgeting challenges, and inadequate supports. Parents of adult children with IDD value self-directed supports, although programs cannot cover all possible independent living needs due to a number of factors, including unavailability of desired supports, program rules, or budget limitations. As practices vary by program, our research suggests approaches from different programs that families may find helpful.