Family caregivers in the U.S. provide billions of hours of care worth billions of dollars. This care should be voluntary, and, for older adults and people with disabilities receiving the care under a Medicaid service plan, federal law requires it.

Under federal Medicaid regulations, Medicaid service plans for older adults and people with disabilities who receive Home and Community-Based Services (HCBS) cannot compel family members to provide unpaid assistance. However, state Medicaid programs (often through managed care organizations) frequently violate federal law by basing service levels on the availability of unpaid care by family members, effectively compelling family members to provide this care, often at the expense of their jobs and their own health.

In this Issue Brief, Voluntary Means Voluntary: Coordinating Medicaid HCBS with Family Assistance, multiple examples from Florida illustrate this systemic national problem and point the way toward the advocacy needed to solve it.

To see more Justice in Aging resources on HCBS, click here.

Justice in Aging thanks the Retirement Resource Foundation for supporting Justice in Aging’s work with Florida Medicaid advocates, and the writing of this issue brief.