July 30, 2018
About 13 million Americans need long-term services and supports (LTSS), and nearly half are adults younger than age 65 who have a wide variety of disabilities and LTSS needs. However, our understanding of the characteristics and needs of the LTSS population is largely derived from studies of people age 65 and older. We have very little information on the LTSS needs of this younger adult population. This gap in knowledge between the older and younger adult populations has contributed to a disproportionate focus in policy and programming on the LTSS needs of older Americans and makes it difficult to build an effective case for improvements in service delivery and financing of LTSS for adults under age 65 with disabilities.
This White Paper, funded by a grant from the Commonwealth Fund, summarizes the findings from a set of activities conducted to identify the data gaps concerning the extent and diversity of LTSS needs and unmet needs of adults under age 65, and makes recommendations for filling these data gaps.