After Us: The Race to Build a Future for Adults With Disabilities Before Their Caregivers Are Gone

For millions of families, the answer exposes a system unprepared for adulthood, aging, and long-term disability care.

Nearly three-quarters of caregivers for adults with disabilities worry about future care needs, and 68% fear what will happen when they are no longer able to provide support—an uncertainty shaping how families plan for the future.

Across the United States, a quiet but urgent question is reshaping how families, policymakers, and advocates think about disability care: What happens when family caregivers are no longer here?

For millions of families raising children with autism, intellectual disabilities, and other high-support needs, the answer is increasingly unclear, and increasingly urgent. While much of the national conversation around disability services focuses on early intervention and education, far less attention has been paid to what comes next: adulthood, aging, and long-term care in a system still largely built on unpaid family labor.

Today, an estimated 75 percent of adults with intellectual and developmental disabilities (IDD) live at home with a parent or relative. That model…