Paying family caregivers: self-direction in medicaid personal care.

Introduction: As people age, many require help with personal care-often provided by family members or friends or direct care workers. Over the last three decades, driven by the disability rights movement, direct care worker shortages, and caregiver burden, self-direction has emerged as a Medicaid option that allows individuals to hire and pay their own caregivers, including family members. Methods: We use 2021 TMSIS Medicaid claims data linked to Medicare Master Beneficiary Summary File to identify dually eligible beneficiaries 65+ receiving personal care. We describe the demographic characteristics of self-direction users compared to non-self-direction users and present the percentage of self-direction users across states. Results: We find that over half of dually eligible beneficiaries 65+ receiving personal care use self-direction. Compared to individuals who use agency-based personal care, self-direction users have higher prevalence of chronic disease, higher home health use, and higher Medicare costs. Conclusion: Self-direction has become a common model of personal care among older adults enrolled in Medicaid. Examining how funds allocated for self-direction are spent; the effects of self-direction on consumers and their caregivers; and how self-direction may impact Medicare and Medicaid costs is critical to inform the expansion and funding of Medicaid self-direction programs.