Abstract
The majority of individuals who need long-term services and supports (LTSS) in the US rely
on unpaid assistance from family and friends. Among the approximately 11 million
individuals with LTSS needs living in the community, 92% receive unpaid assistance and
only 13% receive any form of paid assistance. 1 Nationally, there are over 53 million family
caregivers.2 The economic value of the unpaid care they provide is estimated to be over
$470 billion annually.3
Unmet needs and long waiting lists for Medicaid Home and Community Based Services
(HCBS) place significant strain and economic burden on individuals with disabilities and
their families. Even among individuals receiving Medicaid HCBS there are high levels of
unmet needs for services.4 When individuals do not have needed HCBS, their health and
community living outcomes are worse. Moreover, the health and economic well-being of
family caregivers erodes, often resulting in undesirable placements in more costly nursing
home and institutional settings.