Learning about and qualifying for Home and Community-Based Services Waivers: Families' perspectives and experiences

BACKGROUND: To support adults with intellectual and developmental disabilities to experience a better-quality life, national, state, and local governments offer a variety of long-term services and supports. However, the responsibility of qualifying for and accessing long-term services and supports often falls outside of these systems and on the adults with intellectual and developmental disabilities and their families. OBJECTIVE: Given the family's role in securing long-term services and supports, this qualitative study investigated the perspectives of families of adults with intellectual and developmental disabilities and their experiences learning about and qualifying for Home and Community-Based ServicesWaivers, a common funding source for long-term services and supports. METHODS: Relying upon qualitative methods associated with grounded theory, six mothers of adults with intellectual and developmental disabilities from three states were interviewed. RESULTS: Analysis of interview transcripts revealed five themes addressing: families' reasons for seeking HCBSWaivers, families' experiences learning about HCBSWaivers, frustrations encountered, families' suggestions for change, and parents' characteristics and roles. CONCLUSION: Interview results provided a nuanced understanding of participants' perspectives and experiences, highlighting their active participation, emphasizing the challenges they have encountered, and uncovering their suggestions for change. Implications for research and practice are discussed.