The number of older adults in the United States who need long-term services and supports (LTSS) is growing rapidly, with unpaid family care accounting for 65 percent of that care. However, one in seven older adults with significant needs for LTSS in 2020 did not have a spouse or children; by 2080, the proportion will be one in four. While some of the care for that population is projected to shift to paid care professionals, adults aging solo often turn to friends, neighbors and other members of their social networks to provide care.
Medicaid provides states with a broad array of opportunities to deliver home and community-based services (HCBS) to help older adults and adults and children with disabilities to live independently in their community using sections 1915(c) and 1115 of the Social Security Act. States must submit documents to CMS in order to obtain approval under these authorities to offer HCBS. For ease of reference throughout this document, we will use the word “waiver" or “waivers” to encompass any authority that a state uses to deliver HCBS.
Many waivers incorporate provisions that recognize the importance of family caregivers in planning and providing those services. However, states vary widely in whether and how they define family in waivers, and those definitions may not reflect the needs and resources of adults aging solo and the friends and neighbors who look after them.
To assist states designing and/or revising HCBS waivers, ADvancing States analyzed how waiver language defines family caregivers and how those definitions relate to older adults without immediate family available as caregivers.