THEY’LL PAY A STRANGER BUT NOT ALWAYS A PARENT

THE PATCHWORK SYSTEM OF PAID CAREGIVING IN AMERICA

Across the United States, a quiet but consequential policy question continues to shape the lives of families raising children with disabilities: who gets paid to provide care and who doesn’t.

In theory, every state offers some pathway for family members to be compensated as caregivers through Medicaid-funded programs. In practice, the rules vary widely, and for many parents, especially those caring for children under 18, getting paid to care for their own child remains complicated, inconsistent, or out of reach.

Most states operate what are known as “consumer-directed” or “self-directed” care programs, which allow individuals receiving Medicaid to choose their own caregiver rather than relying on a home care agency. These programs, available in nearly every state, often permit the hiring of relatives—including, in some cases, parents.

But the distinction lies in the details.

A System Built to Pay Care But Not Always Parents

While all states fund some form of paid caregiving through Medicai…