Affiliations:
The University of Kansas, Lawrence, KS, USA
Correspondence:
[*]
Address for correspondence: Sarah R. Carlson, Department of Special Education, University of Kansas, Rm. 521 JR Pearson Hall, 1122W. Campus Road, Lawrence, KS 66045, USA. Tel.: +1 785 864 0545; E-mail: [email protected].
Abstract: 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 Services Waivers, 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 HCBS Waivers, families’ experiences learning about HCBS Waivers, 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.
Keywords: Families, home and community-based services waivers, intellectual disability, qualitative research
