Long-Term Care at Home

The majority of older Americans want to stay in their homes as they age. Why then do so many face barriers to receiving long-term care at home?

Home and community-based services (HCBS) encompass a wide array of medical and social services, such as home health aides, meal deliveries, and transportation services. By allowing people to remain in their homes and communities, HCBS provide an important alternative to nursing home care. HCBS programs are especially vital in light of the Supreme Court’s Olmstead v. L.C. decision, which held that unnecessary institutionalization of people with disabilities constitutes illegal discrimination.

But Medicaid—the largest single payer of long-term care in the United States—has a structural bias toward institutional care. Although Medicaid requires states to cover nursing home care, HCBS coverage remains largely optional. States that wish to cover HCBS can do so by requesting a waiver of Medicaid’s rules on long-term care or by amending their state plans. States are permitted to limit the scope of these benefits and restrict their availability to only certain subsets of the Medicaid population.

All states, however, offer some form of HCBS to at least some individuals, and the programs are growing increasingly popular. In fact, the majority of long-term care spending under Medicaid now goes toward HCBS rather than institutional care. Still, demand outpaces supply. As of 2020, over 600,000 individuals were on waiting lists for HCBS in their state. Demand rose even more sharply during the pandemic, as individuals in nursing homes sought to transition to home care.

The U.S. Congress attempted to alleviate some of the strain on HCBS programs through the American Rescue Plan Act, which temporarily increased federal funding for Medicaid HCBS by 10 percent. But more substantial investment remains elusive, as the Biden Administration has yet to deliver on its proposal to increase HCBS spending by $400 billion.

In this week’s Saturday Seminar, we feature the work of scholars who discuss the regulatory landscape of HCBS.

• Although demand for home care workers has continued to outpace supply in the years following the Olmstead decision, the quality of home care jobs fails to reflect such demand. In an article published in the Georgetown Journal on Poverty Law & Policy, Kezia Scales of the Paraprofessional Healthcare Institute argues that states should address several concerns to strengthen the home care workforce. Scales suggests that states ensure that home care workers receive competitive compensation and improved training. She also recommends that states address regulatory inconsistencies surrounding workers’ scope of practice.
• In an article published in the Annals of Health Law and Life Sciences, Tara Sklar of the University of Arizona, James E. Rogers College of Law, and Rachel Zuraw of the University of California, Berkeley School of Law argue that there are great disparities in oversight of states with HCBS waivers, which affects protections that could address elder abuse occurring outside of institutional facilities. To remedy this issue, Sklar and Zuraw recommend that states collect and share data about their failures and successes under the HCBS waiver system. Furthermore, they suggest that advancements in technology could help monitor HCBS for the provision of more transparent and cost-effective care.
• The perceived effectiveness of Medicaid managed long-term services and supports (MLTSS) programs are currently based on faith more than on conclusive evidence, argues Brendan W. Williams of the New Hampshire Health Care Association in an article for the Loyola Consumer Law Review. At least 22 states adopted MLTSS programs, which involve states hiring private managed care companies to deliver long-term care services. But Williams argues that these costly programs could have overstated successes and risked human lives and that a move toward HCBS can occur without the intervention of MLTSS. Williams contends that states should seek stronger evidence of success before choosing to enter into MLTSS.
• In an article published in the Saint Louis University Journal of Health Law & Policy, Elizabeth Edwards, David Machledt, and Jennifer Lav of the National Health Law Program argue that states should make some of the pandemic-era changes to HCBS permanent. During the COVID-19 pandemic, many states used emergency authorities to expand and protect access to HCBS. For example, several states increased wages for community-based providers and expanded meal delivery services. Edwards, Machledt, and Lav argue that many of these changes, if made permanent, would improve workforce stability and reduce health disparities.
• Tax policy and health care policy often exist in tension, explains Christine Speidel of the Villanova University Charles Widger School of Law. In an article published in the Loyola University Chicago Law Journal, Speidel explores the unintended effects of the “difficulty of care” gross income exclusion. This policy allows family caregivers to exclude HCBS payments from their gross income, which expands options for caregivers to receive health insurance under the Patient Protection and Affordable Care Act. Speidel warns, however, that excluding these payments can lower a family’s earned income tax credit. Speidel criticizes the Internal Revenue Service for its inconsistent guidance on this issue and urges lawmakers to coordinate tax policy and health care policy.
• In an article for the Saint Louis University Journal of Health Law & Policy, MaryBeth Musumeci of the Kaiser Family Foundation argues that Medicaid funding provides HCBS that are typically not available through other payers. The majority of Medicaid spending goes toward long-term services and supports for seniors and people with disabilities, and states have flexibility to use these funds in a way that caters to their populations, Musumeci explains. If the federal Medicaid funding to states decreased, vulnerable populations would be at risk of losing their HCBS, argues Musumeci.