Family Member Roles and Well-being in Self-Directed Waiver Programs

Marji Erickson Warfield, PI; Susan Parish, Co-PI

Previous research has shown a strong association between self-directed services and the improvement in participant well-being. However, little is known about the well-being of the family members engaged in these programs or the aspects of program operation most associated with their well-being. Given the growing population of individuals with long term support needs and the view of self-direction as a desired program, states could benefit from evidence regarding those program features that promote well-being and identify family caregivers best suited for different roles and responsibilities in these programs. Thus, this project will investigate the well-being of family members who are engaged in self-directed HCBS waiver programs as either the paid caregiver or the authorized representative. The research aims at identifying the following issues; 1) how family relationships and the family environment or culture are associated with the operation of self-directed waiver programs, 2) which aspects of the family environment or culture and waiver program operation predict family members psychological and financial well-being and physical/mental health, and 3) whether the way the program operates exacerbates or buffers the impact of the family environment on family members well-being. The sample will include participants from Virginia and West Virginia and the research will be conducted through interviews with family members and analyzing data from Public Partnerships, LLC.

This project will contribute to a greater understanding of caregivers’ well-being overall and how well-being is associated with the various roles different family members play in self-directed programs. Further, it will build on the ecological and life course conceptual framework and direct efforts toward including individuals from minority groups including African Americans. Results will be disseminated through peer reviewed journal articles and research briefs.

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