COVID-19 spoke to us about an issue long overdue for attention, and it is now time to heed its message.
That issue is long-term care. To be sure, the pandemic has changed the way we think of long-term care, and if we lean into the crisis-earned set of lessons learned, we can do more than just tweak the system. We can transform it.
But to do that, we’ll need to take unprecedented action. It will take an all-hands-on-deck approach—decisive action from the public, private, and nonprofit sectors, with consumers driving and informing change the whole way through.
What Are the Issues?
First, we need to come to grips with what went wrong. The pandemic came into our lives like a tornado—fast, furious, and deadly. But it did not leave like a tornado. It is still here. Understandably, all our attention went first to hospitals, where the sick were coming in droves. However, very soon it was evident—at least to some—that nursing homes were the deadliest places to be.
Note, however, the emphasis on some. It took months to get the attention of state, federal, and local leaders who could intervene. Why? Some would say ageism. Couple that reality with nursing homes’ low status within the health care system, and the result is apathy. It took the potent combination of data and advocacy to command attention. The first distribution of Provider Relief Funds specific to nursing homes—so critical to pay for personal protective equipment (PPE) for nursing home staff—did not occur until May 2020. And despite the horrific loss of life at facilities in March and April, officials did not mandate that nursing homes report resident and staff cases and deaths until May as well.
What is stunning is that even as some states experienced horrific nursing home deaths in the spring of 2020, offering much to teach the rest of the country, other states failed to pay attention. As our Nursing Home Dashboard showed, by the summer and early fall, nursing homes across the nation had extremely high levels of cases and deaths. And despite millions of federal dollars going to nursing facilities by then, we found that one in four nursing homes still had a shortage of PPE in September. In the lowest performing states, 60 percent of nursing homes did not even have a one-week supply of PPE despite widespread infections.
No wonder more than 183,000 people have died in nursing homes so far. While less than 1 percent of Americans live in nursing homes, they account for about 32 percent of all COVID-19 deaths in America.
That is all to say nothing of home-care shortcomings. Policymakers barely acknowledged the situation for people receiving services in their homes. Some states like Washington were able to get PPE for home care workers prioritized at the same level as hospitals and nursing homes by April. Most states did not address home care at all.
What Problems Already Existed?
Some of the problems we saw were unique because of COVID, while others were exacerbated or made more apparent during COVID. For example, the need for PPE stockpiles was unprecedented, but the lack of consistent infection prevention and control measures in nursing homes was a problem long understood. State inspectors cited eight in 10 nursing homes for infection control problems before the pandemic.
Yet the most glaring issue that emerged is one that we should have foreseen because of inequities we have long known about: COVID-19 has resulted in significant race and ethnic disparities in nursing home cases and deaths. Because only four states (Iowa, Indiana, Louisiana, and Mississippi) report cases and deaths in nursing homes by race/ethnicity, we cannot quantify the full impact of the pandemic on communities of color. One national study reports that nursing homes with a resident population that is more than 40 percent Black or other people of color reported triple the number of COVID-19 deaths than nursing homes with more than 97 percent White residents.
We have also known for decades that people prefer to get help in their own homes rather than go to an institution but often face barriers to getting services and supports at home. The pandemic underscores the need to make this happen for as many people as possible, not only because it is more desirable and less costly, but because it is also safer.
What Do We Do Now?
We need to take all we have learned in the past year and act now to prevent this tragedy from happening again. We must transform long-term care. Even pre-pandemic, we knew many ways to do that—from past research and demonstrations, experiences from states that pioneered new approaches to long-term care, and promising ideas from both the private and public sectors.
First, we need more long-term care options.
The long-term care infrastructure we invest in cannot be limited to nursing homes. Investing in home and community-based services (HCBS) infrastructure will reduce the need to build more institutions that are expensive for consumers and for public budgets. And if there is one thing the pandemic has taught us, we should do all that we can to avoid unwanted nursing home admissions. We can start with what we already have now and build in critical supports. Here are some ideas for action:
1. Strengthen the HCBS infrastructure.
- Rather than build more buildings, we can build the workforce that can provide services in structures already built: people’s homes. We also need to improve the work experience of home care workers. Regardless of what setting they work in, direct care workers need pay that is commensurate with the high degree of complexity of these jobs. They need benefits, safe working conditions, and career paths characterized by advancement, expanded responsibility, and growing salaries. Today, home care workers face other challenges that we must address as well. Many people view them as “glorified maids,” when in fact these jobs require a wide range of competencies and skills. They receive little to no training, have low-quality supervision, and experience instability in their work schedules. They are less likely to get PPE than workers in hospitals or even nursing homes. And they need access to affordable, reliable transportation to get to consumers’ homes. Until we invest in transforming these jobs and supporting workers’ concrete transportation needs to get to people’s homes, we will not have a true infrastructure for home-based care.
2. Start now to stop the institutional bias built into our public support for long-term care.
- Some policy makers have been trying to do this for decades, making incremental policy changes around the edges here and there. But institutional care is still a mandatory service in the Medicaid program, the program that combines federal and state funding to assist low-income individuals with health and long-term care expenses. HCBS choices are optional. Now is the time for drastic change. At the very least, we must cut the red tape so people with very low incomes can get services in their homes, instead of entering a nursing home as their only choice. States should use basic information and screening tools to presume that a low-income person is eligible for Medicaid so that they can start home-based services while the rest of the paperwork proceeds over the next several weeks or months.
- Further, we must incent states to offer more HCBS options and eliminate the waiting lists that 800,000 people now face to get services in their homes and communities under Medicaid. Continuing to increase the federal match for services is one important way to do this.
3. Support family caregivers who provide the bulk of long-term care.
- Enact the bipartisan Credit for Caring Act, which would create a caregiver tax credit to provide some financial relief from their out-of-pocket costs, which averaged $7,000 in 2016.
- Incent employers to offer flexibility for working family caregivers. In addition to helping the caregiver juggle both job and caregiving responsibilities, the economy would benefit if working family caregivers had more access to supportive policies. The Economic Impact of Supporting Working Family Caregivers found that if family caregivers ages 50-plus have access to support in the workplace, the U.S. Gross Domestic Product (GDP) could grow by an additional $1.7 trillion (5.5 percent) in 2030 and by $4.1 trillion (6.6 percent) in 2050.
- Pay family caregivers who cannot earn a living outside the home because they are taking care of our most vulnerable people. This is a cost-effective option compared to paying for care in a nursing home. One analysis found the contrast to be $1,774 a month compared to $6,175 for a month in a nursing home. Permitting family caregivers to provide long-term care services in the home also reduces exposure to infections and helps address the growing shortage of home care workers. It also replaces some of the lost income from family caregivers having to leave jobs because of their caregiving responsibilities.
Second, we need to change the nursing home model.
Because some people do choose to receive long-term care in nursing homes, we must reimagine how we can offer higher quality care in residential settings. That does not mean we need more buildings. It means we need to offer incentives to providers to replace or remodel their facilities, and to introduce new models of staffing. Ideas include:
1. Abandon semi-private rooms and “wards” and move to private rooms, which reduces the risk of infection spread and improves the quality of life for residents.
THE GREEN HOUSE® model is the most widely researched small-house nursing home option, characterized by private rooms and bathrooms, and staff who combine the roles of personal care, meal preparation, and laundry. This homelike arrangement helped to reduce the risk of COVID-19 infections and deaths significantly in such settings. They had 2.8 deaths per thousand residents, compared to 38 deaths per thousand in traditional nursing homes.
Recently, a 40-year-old nursing home in Maryland piloted a Green House 2.0 transformation, starting with reinventing one traditional floor of shared rooms to two self-contained communities with private rooms and a new staffing model.
2. Address nursing home workforce issues. Like the home care direct work force, nursing-home direct care workers need better pay and benefits, safe working conditions, and career paths. Big investors in nursing homes are urging nursing homes to increase pay, offer paid sick leave, and increase staffing levels. We need to stop the pattern of “shared staffing” in which nursing homes, in effort to avoid having to give workers benefits, do not give them enough hours , thereby forcing them to work in two or more nursing homes to make a living (still with no benefits).
3. Expand the Centers for Disease Control and Prevention’s (CDC) systematic monitoring and reporting of infection rates to include nursing homes and assisted living. Require demographic data, including age, race, gender, and ethnicity across all settings. We need data to inform policy and practice, particularly to address disparities.
Calling All Stakeholders: A Call to Action
COVID-19 exposed what many already understood concerning the need to transform long-term care. That is not to say, however, the pandemic hasn’t taught us a great deal, for it has. Yet perhaps its greatest lesson is its message that we must act now. It is time for all sectors to work together with experts, consumers, and advocates and make that happen.