Publications
Medicaid plays critical role in supplementing informal care for older disabled workers
2026
Kaufman, J., & Yin, N. (2026, June 1). Medicaid plays critical role in supplementing informal care for older disabled workers [Poster presentation]. AcademyHealth Annual Research Meeting, Seattle, WA.
Jennie Kaufman
Research Objective: People who experience a work-limiting disability may need temporary or permanent assistance with personal and instrumental activities of daily living (ADLs/IADLs) such as bathing, dressing, cooking, and cleaning. Not everyone has family members able to provide all the needed assistance. Medicaid coverage of home care has been a preferred and less costly alternative to nursing homes. This study examines how paid and unpaid care use differs between beneficiaries of Supplementary Security Income (SSI), which qualifies the recipient for Medicaid, and beneficiaries of Social Security Disability Insurance (SSDI), which does not.
Study Design: We used publicly available data from the 2000 to 2020 waves of the Health and Retirement Study, a nationally representative longitudinal survey of Americans over age 50 with oversampling of Black and Hispanic individuals. This cross-sectional analysis describes the ADL and IADL needs and amount of paid and unpaid care received by recipients of disability benefits and nonbeneficiaries who report health-related work limitations. We used linear regression to analyze how hours of care and unmet needs differed between the groups.
Population Studied: The sample comprises recipients of SSDI, SSI, SSDI+SSI, and nonbeneficiaries with work limitations, age 50–64 (N=8,452), at the first interview wave when they were disability beneficiaries or reported health limiting their work. The unweighted sample is 59% female, 63% White, 25% Black, and 12% another race. About one-third (35%) reported at least one ADL difficulty, and 28% reported at least one IADL difficulty.
Principal Findings: Among those with any ADL or IADL difficulties (N=3,683; 61% of beneficiaries and 31% of nonbeneficiaries), beneficiaries reported an average of 2 kinds of ADL difficulties and nonbeneficiaries 1.5. All groups reported getting help with fewer than half of reported ADL needs and about three-quarters of IADL needs. Most home care was unpaid, but the proportions differed by beneficiary group. Asked about person-hours of care in the past month, SSDI-only beneficiaries and nonbeneficiaries reported receiving more than 9 hours of unpaid care for 1 hour of paid care; for SSI-only beneficiaries, the ratio was about 8 to 1; and for SSDI+SSI beneficiaries, the ratio was about 4 to 1. In regression analyses controlling for the number of ADL and IADL needs as well as race, gender, and urbanicity, Medicare and Medicaid were significantly associated with more hours of paid care (respectively, B=7.609, p<.001; B=6.703, p=.003), but there was no difference in hours of unpaid care. Medicaid was associated with fewer unmet needs (B=–0.119, p=.002). Exploration of the panel data reveals that care needs fluctuate: 59% of those with ADL difficulties reported both increases and decreases in needs over the reporting period.
Conclusions: Many workers disabled before retirement age have significant home care needs. Informal care predominates, but Medicaid is critical in providing access to paid care.
Implications for Policy or Practice: Upcoming budget cuts are widely expected to end the Medicaid home care program in many states. Strategies are needed to ensure people with disabilities can remain in the community. Flexible state programs could help by providing fill-in paid care as needed.