It’s time to care about home care

When President Biden shared his American Jobs Plan, one figure sent ripples of excitement through communities that advocate for older adults and persons with disabilities: $400 billion (over eight years) for home care. The executive director of Justice in Aging, a non-profit organization focused on senior poverty, declared the proposed funding “transformational” and suggested that Biden was signaling what “could become the most profound and meaningful shift in aging policy in decades.”

Yet as advocates focus on how to spend the $400 billion, Republicans have put it on the chopping block: Thursday’s Republican counteroffer on the American Jobs Plan includes no money for care-related investments.  

Regardless of the GOP’s stated justifications (that systems that support care don’t seem to be “real” infrastructure) this move flies in the face of one of the most obvious lessons from the COVID-19 pandemic: America needs to prioritize and support alternatives to nursing homes so that older adults can lead healthier and more satisfying lives. 

From the day that COVID-19’s U.S. presence was first detected in a Seattle-area nursing home, the pandemic has exposed the danger of America’s current approach to long-term care, an approach that pushes individuals with substantial care needs into nursing homes. Medicare, the primary source of health insurance for older Americans, does not pay for long-term care. Even if homebound, Medicare beneficiaries can only receive in-home care if the care they need is skilled and intermittent. Those with substantial needs generally don’t qualify. The result is that Americans who need long-term care must pay out-of-pocket, have private insurance (unaffordable for most), or qualify for Medicaid.  

And the Medicaid program strongly incentivizes institutionalization. As I recently explained in the Georgetown Law Journal Online, Medicaid requires states to provide Medicaid coverage to pay for long-term care services provided in nursing homes, but allows states to decide whether (and to what extent) to cover equivalent services in home and community-based settings. Consequently, older adults in many states face long waiting lists for Medicaid-covered home and community-based services (HCBS). As of 2018, the average waiting time for an older adult seeking Medicaid-funded HCBS was well over two years. Thus, older adults in many states cannot readily get the long-term care services they need without first moving to a nursing home.   

While the problems with an institution-focused approach to long-term care are longstanding, the COVID-19 pandemic laid them bare. The pandemic showed the inherent risks of congregate care, including that it impedes common strategies for reducing transmission of infectious disease. It also showed how chronic understaffing and underspending on care puts nursing residents at substantial risk of neglect and avoidable death. Even before the pandemic, researchers had found that most facilities did not have the minimum staffing levels needed to avoid systemic neglect. Now, low staffing levels — particularly low levels of nursing staff — are linked to decreased ability to control COVID-19 outbreaks in nursing homes.    

The proposed $400 billion in funding for HCBS would not end Medicaid’s institutional bias, but it could go a long way to expanding access to alternatives to nursing homes. Key details have yet to be made public: The Biden administration’s fact sheet provides only a general indication that the funding would raise wages and benefits for home care workers and expand the Money Follows the Person program, which helps nursing home residents transition to community-based care. But there are a variety of promising options that could advance the proposal’s twin goals of expanding access to care and supporting care workers. Funds could be used to help move people out of institutions, help more people get the care they need in the community without first moving to an institution, and create a more skilled, stable and equitable home care workforce.  

Expanding access to HCBS would not only reduce nursing home-associated risk, but would also provide more Americans with the ability to live as they wish. After all, the vast majority of Americans want to age in place, not move to a nursing home. Shifting away from institutional care could also result in a more efficient use of taxpayer funds. While researchers have long debated whether expanding HCBS saves taxpayers money, there is a growing body of evidence that — at least on a per-beneficiary basis — states can reduce expenditures by providing HCBS services to Medicaid beneficiaries who would otherwise qualify for nursing home care.  

Increased funding could also support the essential workers who are needed to deliver this care, consistent with Biden’s campaign promise to give care workers a “much needed raise.” Currently, the home care industry is plagued by limited benefits and low wages: The median hourly wage for home health and personal care aides — even with a boost for COVID-19-related hazard pay — was just $13.02 an hour in 2020. This raises issues of fairness and equity for workers, over 60 percent of whom are racial or ethnic minorities and nearly 90 percent of whom are women. It also puts care recipients at risk. When workers lack sick leave, they are more likely to come to work sick — placing care recipients at risk for infection. When workers don’t have stable income and benefits, they are less likely to stick with a job, resulting in substantial turn-over and inconsistent care.

Increasing support for HCBS and investing in the home care workforce also has the potential to reduce racial disparities in the quality of long-term care. For example, Black older adults in the U.S. face higher levels of disability and poverty relative to their white age peers, and therefore are likely to be disproportionately disadvantaged by any continued failure to adequately support home-based care. Indeed, a 2019 study found Medicaid, on a per-individual basis, spends less money per beneficiary on HCBS for Black recipients and that Black recipients of HCBS experience worse outcomes than white recipients.  

In short, Biden’s proposed $400 billion investment in home and community-based care is consistent with what we have learned from the COVID-19 pandemic: Long-term care should not require institutionalization. Politicians have an opportunity to show that they learned that lesson by expanding access to home and community-based care and investing in the essential workers who provide it.  

Nina A. Kohn is the David M. Levy professor of law at Syracuse University and the Solomon Center Distinguished Scholar in Elder Law with the Solomon Center for Health Law & Policy at Yale Law School. Her research focuses on the civil rights of older adults. Follow her on Twitter @NinaKohn.