A Pilot Study of Adult Disability Services and Legislative Advocacy Among Parents of Youth with Multiple Disabilities

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Meghan Burke
Kristina Rios
Janeth Aleman-Tovar
Zach Rossetti

Abstract

            Although parents of individuals with multiple disabilities have spearheaded legislation for students with disabilities, little is known about their legislative advocacy experiences with respect to adult disability policy and, relatedly, adult disability services. In this pilot study, we examined the perspectives and experiences of nine parents of youth with multiple disabilities with respect to legislative advocacy via two focus groups. Most participants had negative perceptions of their: legislators, adult disability policies, and, relatedly, adult disability services. Many participants suggested changes to increase the flexibility of Medicaid Home and Community Based Services. Directions for future research and practice are discussed.

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How to Cite
Burke, M., Rios, K., Aleman-Tovar, J., & Rossetti, Z. (2020). A Pilot Study of Adult Disability Services and Legislative Advocacy Among Parents of Youth with Multiple Disabilities. Research, Advocacy, and Practice for Complex and Chronic Conditions, 39(1), 21–41. https://doi.org/10.14434/rapcc.v39i1.31655
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