Building a Stronger, Bolder, Long-Term Care System with Equity at its Center

Editor’s note: During the summer of 2020, as the urgent issue of racial injustice took center stage, ASA and Justice in Aging (JIA) embarked upon a series of articles in Generations Today highlighting for the aging advocacy community how aging, identity and racial equity intersect. Called On Aging, Race, Identity and Equity, the articles will run in each issue for a year.

Angie is an 85-year-old, recently widowed Black woman living in Detroit. Her husband used to help her with her daily activities as her heart disease and arthritis worsened, but since he died she no longer has family caregiving support at home. After Angie fell last fall, her doctor arranged for a few hours of skilled nursing care and physical therapy at home. Now that she has recuperated, however, Medicare’s home health benefit no longer covers the personal care services she needs, such as help with dressing, bathing, daily meal prep and chores.

Her neighbor began helping with occasional errands, but Angie cannot afford to pay for a personal care aide to help every day. She applied for Medicaid home- and community-based services (HCBS). Although  eligible, she has a years-long wait before she can receive services. Angie thinks a nursing facility is her only choice, but she is worried about moving out of her home because she has heard about neglect and deaths in nursing facilities, especially during the pandemic. She believes she can live safely at home if only she could receive some help.  

Medicaid Rules Limit HCBS Access

Unfortunately, Angie’s story is far too common among older adults, especially older adults of color. The reasons are twofold: Medicaid’s historical and persistent bias in favor of institutions like nursing facilities and the compounding effects of racism, ageism and ableism that have created an inequitable system that leaves many older adults with disabilities, like Angie, with few options for staying in their homes, connected to their communities.

Why are so many older adults like Angie, who would prefer to remain at home, being forced to move into nursing facilities when Medicaid HCBS programs exist in every state? When the Medicaid program was enacted into law more than 50 years ago, lawmakers only included coverage for care provided in institutional settings. Accordingly, if one meets the financial and medical criteria for nursing facility care, Medicaid will pay for that care. In contrast, lawmakers did not include coverage for care and services provided in community-based settings, including the home. Such care had to be provided by family members—mostly women—and was uncompensated, which continues to be the case for many families today.

‘While progress has been made to expand Medicaid’s coverage of long-term care and services in the community, Medicaid HCBS is still not an entitlement.’

While progress has been made to expand Medicaid’s coverage of long-term care and services in the community, Medicaid HCBS is still not an entitlement. The result is a patchwork of complicated programs that vary considerably from state to state, with significant gaps, limited service providers, a grossly under-supported workforce and long wait lists—all factors that force older adults into nursing homes unnecessarily.

These gaps harm older adults of color most who are disproportionately more likely to enter a nursing home, and also more likely to receive low quality care compared to white residents. This past year in particular has shown the dangers of COVID-19 deaths and infections in nursing homes, especially where older adults of color live.

Limited HCBS options also harm families, particularly women, who fill in the caregiving gaps. Today, one in five adults is an unpaid caregiver—approximately 53 million individuals. Sixty-one percent of them report having had to take time off work or reduce their hours to provide care, placing their own economic security at risk. And when older adults have no family available, the only option is moving into a nursing facility to receive care.

New Proposal Could Substantially Improve the HCBS Landscape

A new proposal from HCBS champions in Congress, the HCBS Access Act of 2021 (HAA) would change all of this. The HAA would remove one of the major barriers to care at home and in the community for people with disabilities and for aging adults by transforming HCBS into a Medicaid entitlement. Requiring states to cover HCBS would provide individuals with a meaningful choice at the outset to receive care in the community, without overloading their loved ones.

The HAA also would streamline and simplify eligibility and eliminate the complex and burdensome waiver applications and waiting lists, which lead some individuals, like Angie, to enter nursing facilities because they need the services immediately and don’t have family to help them or money to bridge the gap.

‘When lawmakers created the HCBS system, they did not center the long-term care needs of people of color.’

Justice in Aging also sees the HAA as an opportunity to address racial inequities in access to high-quality HCBS. When lawmakers created the HCBS system, they did not center the long-term care needs of people of color, thus embedding and perpetuating existing racial inequities that require the kind of transformation envisioned in the HAA.

Currently, half of states spend twice as much on institutional care for older adults as they do on HCBS, which disproportionately harms low-income communities of color. For example, in Wayne County, Mich., where Angie lives and where there is a greater concentration of older adults of color, there are disproportionately fewer HCBS program enrollment slots available compared to less populated, more white areas of the state.

As we explained in our feedback on the HAA, an equitable system must eliminate this patchwork waiver system, while intentionally expanding services and eligibility to ensure that the needs of older adults of color are being met.

Disparities in HCBS access are most notable for individuals with Alzheimer’s and other dementias, which disproportionately impact Black and Hispanic older adults. At age 80, 75 percent of people with Alzheimer’s and dementia live in nursing homes, compared to just 4 percent of the general population. The HAA could specifically include incentives and set benchmarks to address these inequities in access to HCBS for individuals with Alzheimer’s and dementia.   

This transformation of our HCBS system is a long-time coming, but progress is underway. The HAA would build upon the $10 billion in targeted HCBS funding in the American Rescue Plan and the $400 billion investment in the care infrastructure proposed in the American Jobs Plan. Together, these investments would expand services and support the direct care workforce to transform Medicaid HCBS into an equitable system for all older adults and people with disabilities, and the people who care for them.

Gelila Selassie is a staff attorney and Natalie Kean is senior staff attorney, both in JIA’s Washington, DC, office.