America has an “elder care crisis,” per some observers — who made that declaration even before the coronavirus hit. Now, nursing homes and long-term care centers have accounted for more than 65,000 coronavirus deaths nationwide. Some argue that the pandemic has exposed a fundamentally broken system, leading journalist Sara Luterman to argue in the Nation that nursing homes should be abolished. But other elder care advocates say the U.S. has an opportunity to radically reform, rather than replace, these homes for the better.
The Inquirer asked Luterman to debate researchers at the University of Pennsylvania’s Leonard Davis Institute of Health Economics: Is it time to get rid of nursing homes?
By Sara Luterman
Pennsylvania’s nursing homes, like nursing homes across the country, have been ravaged by the pandemic. Over two-thirds of the state’s COVID-19 deaths have occurred in nursing homes, according to the Department of Health. This is higher than the national average, which hovers around 40%.
Nursing homes have always been a petri dish for communicable disease: crowding together medically fragile people, sometimes more than one to a room, is inherently dangerous. Even before COVID, opportunistic infections like pneumonia, flu, and Clostridium difficile bacteria were more likely to spread among nursing home residents. And the worst part? Nursing homes aren’t even a necessary evil. If we fully invested in home and community-based services, we could live without them.
According to AARP, three out of four seniors would rather stay in their own homes than move to nursing homes. Why isn’t our care delivery system shaped around that preference? It’s not a matter of cost — in Pennsylvania, the average nursing home resident costs the state $65,000, while the average home care recipient costs less. Instead, it’s an issue of federal legislation mandating unlimited payment for nursing homes, but not doing the same for home care. Medicare and Medicaid pay for the majority of long-term care in America — but Medicaid does not prioritize dignity. If Medicaid changes, the industry will change, and private insurance will change with it.
Some people need a substantial amount of care to survive, let alone thrive: specialized equipment, monitoring, and assistance with everyday tasks like eating and bathing. But all of those things can and are already delivered at home. Pennsylvania has a Medicaid aging waiver, which allows for care at home. According to the Pennsylvania Department of Human Services, the aging waiver is supposed to provide for accessibility adaptations, participant-directed community supports, nursing services, and more. Family members can even be compensated for delivering care.
However, like all Medicaid waiver programs, demand is higher than what resources are made available by the state. In many states, waiting lists for Medicaid home and community-based services are years long, while nursing home care is available immediately, by law. Pennsylvania’s aging waiver, on the other hand, has a massive backlog. It is not possible to apply for the waiver in advance — to qualify in the first place, a person needs to require a high level of care. Medically fragile seniors do not generally have years to wait. People can’t put their illnesses and disabilities on hold while the paperwork goes through.
If we committed the same resources to home care that we commit to nursing homes, thousands of Americans would lead safer, more empowered lives. Pennsylvania has a Money Follows the Person grant, which allows the state to do just that. Since 2008, the program has transitioned over 4,000 seniors and people with disabilities from nursing homes and other congregate care settings into the community. Instead of funding nursing homes, the money is used to secure accessible, affordable housing and help with everyday activities.
Seniors and people with disabilities deserve to choose what to eat for dinner, who to spend time with, and to live in the comfort of our own homes. Nursing homes too often strip the most basic choices away from people. Americans deserve better. And we can do better. We have the infrastructure. We have a model. We just need to reform Medicaid and commit to progress.
Sara Luterman is a freelance journalist covering disability policy and politics. Her work can be found in the Nation, Vox, and the Washington Post, among other outlets.
By Rachel M. Werner and Allison K. Hoffman
While nursing home residents are only 1% of the population, they represent over 41% of COVID-related deaths nationwide. With over 402,000 nursing home residents and staff infected since March, abolishing nursing homes may seem like a sensible choice. But it is not. A better policy solution is taking long-term care needs seriously and funding them accordingly.
Long-term care has been marginalized in the United States for decades. This continues during the pandemic, with one in five nursing homes reporting personal protective equipment and staffing shortages. Nursing homes are highly regulated, but undermonitored and underfunded. Unsurprisingly, they crumbled under the weight of COVID-19.
Some believe that nursing homes can’t be fixed and should be fully replaced with home-based care — a shift that began decades ago, when a Supreme Court decision required Medicaid to prioritize home and community-based settings as appropriate. But despite their vulnerabilities, we believe nursing homes are integral to any sensible, stable long-term care system.
Few people want to end up in a nursing home. A recent AARP survey reported that three out of four people over age 50 want to age at home. But for many, nursing homes are their only option — whether because of medical or psychiatric conditions, lack of family or friends to care for them, or unstable housing.
For these people, nursing homes provide housing, essential medical services such as prescription drug dispensing, assistance with bathing, eating, and dressing, and food including specialized diets. Congregant settings require fewer staff to deliver these lifesaving services. It also provides social connections at an age when isolation contributes significantly to mental and physical decline.
Even for people who could stay at home, Medicaid does not fully fund all needed care. Informal caregivers — friends and family who help without pay — usually fill in the gaps. Approximately 44 million Americans provide close to 37 billion hours of caregiving, often harming their own health and financial security. Shifting to home-based care would ask families to add 24 hour-a-day caregiving for a high-need population to already overloaded lives that can include a job, or two, or three — and during a pandemic, monitoring children who are virtually schooling at home.
Paying informal caregivers would be an improvement, but is not the right option for everyone. More affordable community-based options like adult day care could decrease isolation and help those who prefer to remain at home — though not during a pandemic.
Our challenge, then, is to rethink communal living to make it safe and affordable during normal times and crises. We need smarter regulation, much more funding, and less institutional institutions.
Better communal living would include valuing and paying staff who do it — economically and physically, such as with personal protective equipment. Many nursing home staff earn less than $30,000 annually, and over 20% work multiple jobs. Higher wages and better sick-leave policies could decrease COVID-19 transmission, improve job satisfaction, and decrease turnover and staffing shortages.
Nursing homes also need a redesign. Single-occupancy rooms would reduce transmission and increase privacy and dignity for residents — as would shrinking the scale of nursing homes. High-quality group models, like the Green House Project, provide self-contained houses with a small number of residents.
Improving long-term care demands policies that take the care of aging Americans seriously without creating greater insecurity for their families. Moving care from institutions into homes will not get us there.
Rachel M. Werner is the executive director of the Leonard Davis Institute of Health Economics and professor of medicine at the University of Pennsylvania, where Allison K. Hoffman is a senior fellow at the Leonard Davis Institute and professor of law. Norma Coe also contributed research and editorial input to this piece.