Practices of Self-Advocacy and Their Implications From the Perspectives of Transition-Age, Young Adults With Intellectual and/or Developmental Disabilities

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Abstract
Purpose The purpose of the study is to characterize the practices of self-advocacy, as well as their impact on family life, among transition-age adults with intellectual and/or developmental disabilities (IDD; i.e., autism, intellectual disability) enrolled in an inclusive post-secondary education (IPSE) program. Researchers centered young adult voices, which in academic discourse have been traditionally marginalized in favor of centering voices of parents. Methods Focus groups with participants (n = 29) elicited perspectives on programmatic elements, practices of self-advocacy, and student-parent relationships. Results Findings highlighted student perspectives that: (1) caring for yourself and speaking up/standing up for yourself are both practices of self-advocacy; (2) understanding their own roles and context, self-confidence, and the openness of the person they were self-advocating to may serve as facilitators or barriers to self-advocacy; (3) parents have a role in introducing and reinforcing self-advocacy skills for young adults; and (4) relationships with their families changed during involvement in the IPSE program, with some reporting use of self-advocacy skills as a point of conflict with their parents. Conclusion Young adults with IDD report unique practices of self-advocacy such that they include caring for oneself as self-advocacy. Centering their voices may help inform how to best support their transition to independence and facilitate self-advocacy on small (e.g., with family and peers) and large (e.g., with organizations and policy) scales.

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