Disability Community Continues Fight for Access to Home Care

A 1999 Supreme Court case, Olmstead v. LC, granted people with disabilities the right to live at home and receive care in their community, instead of in nursing homes or other institutional settings.

Almost 25 years have passed since the highest court issued its ruling in this landmark disability rights case. It's been 33 years since the Americans With Disabilities Act (ADA) became law. Yet millions of people nationwide still must reside in institutions in order to access the health care services they need. 

HCBS Access Act

Legislators on both sides of the aisle have been striving to secure a basic, vitally important choice for people with disabilities. Namely, they should be able to receive health care services at home or in their community, rather than in an institution. A bipartisan bill known as the Home and Community Based Services (HCBS) Access Act seeks to make this a reality.

This legislation would require that states cover home and community-based services (HCBS) for all Medicaid recipients. These services include supporting individuals carry out their activities of daily living, such as getting dressed, eating, and maintaining personal hygiene. HCBS may also include home health care, physical therapy, and home meal deliveries.

U.S. Sen. Bob Casey (D-PA) and U.S. Rep. Debbie Dingell (D-MI) initially introduced the HCBS Access Act in 2021. They reintroduced the latest version in early 2023. The bill has 18 co-sponsors in the Senate.

Its provisions would assist eligible people with disabilities in addition to many aging adults, the direct care workforce, and family caregivers. Numerous disability advocacy organizations have declared their support for the HCBS Access Act over the years as well.

Medicaid HCBS Programs

Medicaid is a government program designed to provide health care coverage to certain populations. This includes eligible people across the disability community. Today, more than 10 million people qualify for Medicaid based on their disability.

However, the federal government jointly administers this program with the states. As a result, each state can decide to offer different Medicaid benefits compared with other states. (The federal government mandates that states cover only specified services through Medicaid.) The criteria outlining who qualifies for Medicaid, and for HCBS services, can also vary from state to state.

Waiting Lists for HCBS

Many individuals who are living with a disability may qualify for home and community-based services but can’t readily access them. They can face a yearslong waiting list, depending on their state. In fact, as of 2021, more than 650,000 Medicaid enrollees were on HCBS services waiting lists across the country.

At a Senate hearing earlier this year, Sen. Casey spoke at length about the challenges associated with these HCBS waiting lists. In his opening remarks, he cited research revealing that 92 percent of service providers are facing a staffing shortage. “The United States is in the midst, right now, of a caregiving crisis,” he said.

It's a crisis, he added in later remarks, that “leaves millions of seniors and people with disabilities without a meaningful choice of where they can receive essential, life-sustaining care.”

The Effect on Family Caregivers

Family members who care for their loved ones with disabilities also are facing roadblocks as a result. A lack of accessible home and community-based care “corners many family caregivers into upending their careers,” Sen. Casey explained. In many cases, family members find themselves “living on poverty wages or performing unpaid work because they have no other options.”

One witness at the hearing, a family caregiver, shared her personal experience caring for her ailing mother.

“I care for my mother because it is the right thing to do, and I would do so even if I weren’t getting paid. But love can't pay the bills,” she said. “When families know their loved ones are safe and cared for, they can go to their own jobs and continue working.”

Ultimately, Sen. Casey said, passage of the HCBS Access Act would create “real choice for individuals and families.”

Learn more about the HCBS Access Act in this one-pager PDF.