Public Policy Institute

Listening to Family Caregivers: The Need to Include Family Caregiver Assessment in Medicaid Home- and Community-Based Service Waiver Programs

Family support is often essential for helping older people and adults with disabilities continue to live at home and in the community.  Yet the work of family caregivers can be demanding—physically, emotionally, and financially.  If family caregiver needs are not assessed and addressed, their own health and well-being may be at risk, which may lead to burnout—jeopardizing their ability to continue providing care in the community. 

This research report presents findings from the first detailed analysis of family caregiver assessment tools and processes in use by the states in Medicaid HCBS waiver programs.  It explains the importance of assessing the needs of family caregivers, and highlights findings from a 50-state survey—describing the family caregiver questions asked in Medicaid HCBS assessment tools, and explaining how those states that assess caregiver needs use the assessment information.  The report also highlights “promising practices” in family caregiver assessment in three states, and offers policy recommendations to expand HCBS to strengthen caregiving families.

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