Disability, Race, and Structural Inequity: COVID-19 and the Long-Term Care Workforce

Disability, Race, and Structural Inequity: COVID-19 and the Long-Term Care Workforce

A recent NPR  investigation into nursing home COVID-19 outbreaks revealed one factor strongly correlated with the most affected facilities. Not quality of care. Not staffing levels. It was race and ethnicity. Any story of COVID-19 and long-term care should include race and ethnicity alongside disability. That also applies to the long-term care workforce. Direct care workers — who support people with disabilities to bathe, dress, and complete other basic activities of daily life — have been undervalued for decades. The pandemic’s devastating impact on nursing facilities, group homes, and other long term care settings has both highlighted these inequities and made them worse.

Medicaid pays for nursing home care and home and community-based services (HCBS)

Direct care work has long had low wages, high turnover, poor benefits, and frequent on-the-job injuries. Medicaid pays for most of the nation’s nursing home care and home and community-based services (HCBS), but it does not pay well. States typically pay Medicaid providers very low rates. Unlike other areas of health care, Medicare and private insurance offer at best limited coverage of long-term care, particularly HCBS.

People of color make most of the HCBS workforce

Like so many other undervalued but essential workers, people of color make up the bulk of this workforce. Over half of direct care workers are people of color, mostly women of color. Nearly 28% of nursing home employees, 24% of residential facility staff, and 31% of home health aides are black, far higher than their 14% general population share.

These numbers, coupled with low wages, point to structural racism and sexism. Marginalized groups are more likely to fill difficult and underpaid jobs. They also often lack the time, resources, and political clout to push for higher wages and better conditions. Relatively few have unionized, and efforts to do so have met fierce resistance. Improving Medicaid payment for direct care work has long proven a political white whale for both workers and the broader disability community.

Direct care workers face shortages of personal protective equipment (PPE)

COVID-19 magnifies these problems. Despite their hands-on work, many direct care workers still face huge challenges getting personal protective equipment (PPE), often because their employer has not provided it. One personal care attendant in Washington, D.C., has resorted to reusing masks and gowns after spraying them with Lysol after work, while continuing to care for (and isolate with) a man with intellectual disabilities who has COVID-19.

Poor pay, lack of sick leave and benefits

Poor pay and benefits create more COVID-19 challenges. If a direct care worker gets exposed, she may not have access to paid sick leave and comprehensive health insurance. Fifteen percent of community-based direct care workers remain uninsured. As more workers get sick or have to isolate, a chronic labor shortage, which predates COVID-19, worsens. Low wages and the lack of hazard pay make it harder to recruit replacements. Beyond the impact on direct care workers themselves, these compensation issues threaten to disrupt critical daily care for thousands of people with disabilities if they can’t find an available caregiver.

Steps to manage impacts of COVID-19 on direct care workers

We need more resources to ease COVID-19’s devastating impacts on direct care workers and the people they support. Our previous blog identified some concrete action steps:

  • Boost funding for Medicaid and long-term care, both by increasing the federal matching rate and by offering grants to support HCBS. Tie added funding directly to mechanisms that equitably increase compensation for direct care workers.
  • Ensure that systems include direct care workers as essential health workers so they have access to protective equipment equivalent to other health workers.
  • Encourage states to use available emergency flexibilities to buy and distribute PPE, require paid sick leave (even for small employers), hazard pay, retainer payments, and extra time to cover shortages and service gaps; and
  • Push the remaining states to expand Medicaid to cover all low-income adults so uninsured direct care workers don’t fall in a coverage gap.

Make unionizing easier, Fix Long Term Care Financing

These steps are necessary, but not sufficient. The deep structural inequities of direct care work need more than emergency stopgaps. Advocates and policy-makers must take on bigger issues like making it easier to unionize and changing how we finance long-term care to increase public and private funding, particularly for HCBS. If we can collectively move on those larger issues with an eye toward equity, we may look back on COVID-19 as a catalyst for a long-needed reckoning with racial, ethnic, and disability discrimination in our health system, rather than yet another tragedy that lays the inequities bare only to make them worse.

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