COVID-19 and long-term care reform

Older Americans face a crisis amidst wider turmoil. The Biden administration and new Congress face unprecedented challenges — fighting a pandemic, confronting structural racism and rebuilding the economy.

Yet, comprehensive long-term care reform must be atop the policy agenda. Reform should focus on creating equity in the long-term care system through expanded coverage coupled with greater interconnections with the health care and public health systems. We detail this in a recent report and it is echoed by other leaders pushing long-term care reform. 

Critics will say the costs associated with an expansion of benefits are too high and that it is politically infeasible. They may cite other issues as more pressing in the midst of the pandemic’s extensive economic and physical toll. But the need for long-term care reform sits at the very center of the wider structural problems facing U.S. society.

The failings of the American long-term care system are well-documented. These are not new problems, but the COVID-19 pandemic has amplified and brought them into sharp focus. While COVID-19 disproportionately places older adults at risk today, over the long-term everyone will face the rigors of advanced age and decline long after this virus fades into memory. The effects of the pandemic on already-failing systems of care amplifies the need for a long-term care system that provides care with dignity and respect. 

A patchwork system prevails in long-term care, in spite of several reform attempts and a growing population of older adults living with multiple, chronic health conditions such as dementia who will need long-term care during their lifetime. Stark inequalities across race, ethnicity and socioeconomic status as well as an increased burden on family caregivers are clearer than ever.

Formal care settings — and nursing homes in particular — have borne most of the blame for the high rates of COVID-19 infections and deaths among older adults. But that misses the larger story: our society’s failure to invest in a long-term care system that works. This reimagined system needs to primarily be home- and community-based since older adults prefer to remain at home; and this model may be cheaper as well. There has been progress on this in recent years, but as change continues, it is essential that the costs of care are adequately covered in all care settings to achieve equitable coverage.  

The economic impact of the pandemic on state budgets directly threatens Medicaid, the primary funder of long-term care services. Service cuts are often made in times of fiscal strain. This places the most vulnerable at risk for losing services at the very time they are most needed, especially home-based care, which appears to be safer in a pandemic relative to institutional care. Cutting services is unconscionable during a pandemic that has disproportionately impacted this population as well as the home health and nursing assistant workforce providing direct care.     

In partnership with Congress, the Biden administration must take bold steps to restructure the long-term care system. It is essential that comprehensive long-term care financing reform reduces the financial risks to individuals and families. No one should ever go bankrupt paying for proper care for a loved one. The federal government must use a far more coordinated approach as the primary payor of services. A social insurance approach much like Medicare or Social Security is best.   

Uniform public reporting of COVID-19 cases in all long-term care settings is (still) needed. This should include care settings that are regulated by the Centers for Medicare and Medicaid Services, non-federally regulated congregate care settings such as assisted living facilities, and professional agencies providing care in the home. Public reporting should include COVID-19 cases — including recoveries and deaths — among residents and staff across the full spectrum of jobs serving residents, regardless of whether they are providing hands-on care, and it should be reported across all settings, including home health and non-medical home care provided through agencies. 

The identification and support of unpaid family caregivers has received some attention from policymakers before the pandemic and as part of President Biden’s campaign proposal. Caregiver needs have been painfully intensified through job losses and COVID-19 cases (both of caregivers themselves and of care recipients). It is essential to bolster protections for the paid direct-care workforce. These workers need a living wage, paid leave and protections that include training and education that both informs and helps empower this critical workforce.

Our collective COVID-19 response offers a sobering opportunity for real social change. We can create and invest in a long-term care system that truly works — one that covers robust home care, as well as care in high quality facility settings when needed or preferred. Federal policymakers must act to address system deficits through long overdue, substantive reform. The Biden administration’s recent economic plan proposal includes home care and care partner support tying in well with long-term services and supports (LTSS) reform. The time for comprehensive long-term care reform is now.

Dr. Walter Dawson is an assistant professor at Oregon Health & Science University School of Medicine. Dr. Nathan Boucher is an associate research professor at Duke University Sanford School of Public Policy.