Understanding Barriers to Access and Utilization of Developmental Disability Services Facilitating Transition.

Objective: To explore the barriers faced by parents of individuals with intellectual and developmental disabilities when obtaining and using Developmental Disability Services (DDS) to support adolescent transition.

Methods: The authors conducted a basic interpretive qualitative study using semistructured interviews. Interviews were manually coded by the team of university-based researchers using constant comparative analysis. The codes were grouped into themes. Thematic saturation occurred after 18 interviews with parents (n = 10) and service coordinators for DDS (n = 8).

Results: Barriers to DDS enrollment included emotional and administrative burden, fear of invasion of privacy, lack of a qualifying diagnosis, difficulties in accessing information about services, and misinformation about services. Barriers to DDS use once enrolled were difficulty in finding/hiring direct support professionals, high turnover of direct support professionals, and lack of training and skill among direct support professionals. Participants also noted high turnover among service coordinators, further administrative burden from hiring direct support professionals, and required home visits by service coordinators as additional barriers to service use. Participants reported benefits of DDS including increased inclusion for clients in the community, the use of person-centered skill building, and access to respite care and system navigation support.

Conclusion: Although all participants reported benefits of acquiring services, there are significant barriers to acquiring and maintaining these services. Recommendations based on these barriers are provided for DDS, federal policy makers, and local support professionals along with a toolkit of potential strategies to support families.