Waiting for Help: The Medicaid Waiting List Crisis


Who are America’s forgotten waiting list enrollees?

In 1981, Congress created the home and community-based (HCBS) waiver program. These waivers allow states, if they choose, to extend home- and community-based Medicaid services to individuals who would otherwise qualify for care in a nursing home or institution. Essentially, these waivers allow truly needy individuals on Medicaid to receive additional care they need without being institutionalized.

The waiver programs are comprised of individuals with severe intellectual disabilities, traumatic brain injuries, spinal cord injuries, and mental illnesses, among other debilitating conditions.

Benefits for these vulnerable individuals can include homemaker or home health aide services, personal care, adult day health care, habilitation, respite care, day treatment, psycho-social rehabilitation services, clinic services for individuals with chronic mental illness, and more.

Most states currently operate at least one HCBS waiver program or provide HCBS services through their traditional Medicaid programs. Because these programs are optional, states can limit enrollment. Once enrollment hits its cap, individuals are placed onto waiting lists.

As these individuals continue to wait for needed services— some for more than a decade—states are spending record amounts on Medicaid for able-bodied adults, with many states even expanding the program in recent years to cover even more non-disabled adults.

Every dollar spent on these able-bodied adults is a dollar that cannot go to help America’s forgotten waiting list enrollees.

And so they wait. And wait. And wait.