By Libby Watson, The New Republic, May 26 2020
Long before they were ravaged by the Covid-19 pandemic, our nursing homes were a place of heartlessness, abuse, and neglect.
Residents and employees of nursing homes have emerged as one of the hardest-hit groups of the coronavirus pandemic, with a third of overall deaths taking place within nursing home walls. The facilities that mostly care for black and Latino people are even harder hit than those that mostly house white people. The terrible loss of life in nursing homes is partly attributable to huge delays and gaps in oversight of cases: It took until April 19 for the Trump administration to begin tracking the relevant numbers, and many states have failed to report, or even suppressed, the information. It is also attributable to policy decisions, like those made by New York Governor Andrew Cuomo, who ordered hospitals to send coronavirus patients to nursing homes. The data we do have is likely to be an undercount, so the bad news is, in all likelihood, going to get worse.
The coronavirus has revealed a deep vein of callousness in our society, clarifying who is cared for most and least. On the top, getting by just fine, are the rich and powerful: celebrities, politicians, and athletes who got access to early testing; people who can comfortably work from home while an army of delivery drivers and Amazon workers leave stuff at their doorsteps; residents of the Upper East Side of New York who fled the city to their second homes. Lower down the ladder, there are the essential workers who were required to keep going to work. As we reach the bottom, we see the most ignored: Prisoners, the homeless, the Native American population, and those who receive nursing and institutional care—including both the elderly and the disabled. In Texas, for example, the state is testing everyone in a nursing home—except for its own, state-run institutions for people with disabilities.
When you have the governor of New York sending coronavirus patients into cramped facilities—buildings full of the exact demographic most at risk of dying of the disease—you might start to wonder whether these homes exist to care for the elderly or to shove them out of sight to die. But it should have been clear long ago that people in these facilities—people who definitionally need care—are not adequately cared for, and it should not have taken tens of thousands of deaths to highlight the urgent condition of these places. Our government simply does not do enough to ensure a decent, happy life for either the people who need to be cared for by others or the people tasked with providing the care. The people who do this care are underpaid or not paid at all; the people who receive the care are neglected and abused; and the way we have chosen to pay for it, or not pay for it, is absurd.
The basic fact is that everyone is likely to need some kind of care in their old age. About half of those aged 65 will need daily help later in life; others will need help less often but still frequently. This is a problem we have chosen not to address. We do not provide universal long-term care for the elderly, even though it is far too expensive for most people to afford. Instead, we encourage people to spend their life savings until they die or are poor enough to qualify for Medicaid, at which point they will either attempt to squeeze enough home care hours from their state or, if their needs are too great, be sent to a nursing home. To qualify for Medicaid long-term care, in most states, you need to have assets of less than $2,000. If the only thing you own is a 2007 Hyundai Elantra, you may not be eligible.
Most of us will end up in the care of our family members, yet as a nation we make no serious provisions for this reality. These family members are usually uncompensated for their labor, despite the grueling work. Those who could be hired to do this work are poorly compensated, at best. In either case, the commitment required makes it harder for anyone involved to hold down a second job. According to the Family Caregiver Alliance, 65 million people in the United States care for a family member; the estimated lost lifetime income and benefits for these people is over $300,000 each. It is a privilege of the rich to be able to pay someone else to care for their parents.
Understandably, most elderly people prefer to stay at home instead of moving to a nursing home. Medicaid is required to pay for institutional care like nursing homes for eligible low-income people, but states have a lot of latitude in deciding how to cover home-based care. Even though a majority of Medicaid spending now goes to home-based care and states must cover home health aides, they don’t have to cover “personal” care, like assisting people with eating or bathing. In 2018, more than 800,000 people were on state waiting lists for Medicaid home-based and community care services; most of those are people with developmental disabilities, and a huge chunk of those reside in Texas. Three-quarters of states apply limits to the number and length of home health visits paid for by Medicaid, and 16 states do not provide personal care benefits. Some states limit how many hours they will pay for: Kansas will only pay for 12 personal care hours per 24 hours, for example. Disabled people spend countless hours fighting with their states over how much care they need and how much money the state will provide.
When personal care aides help someone dress, feed, or bathe themselves, this is not considered a “medical” intervention. It is nevertheless health care; the major problems that arise if a person cannot eat, such as dying, are definitely “health” problems. Yet Medicare does not cover the cost of long-term care, except for short stays in skilled nursing facilities; it will only pay for “medical” care in the home, and only if prescribed by a doctor. (Perhaps consider getting your doctor to write a prescription for “food.”) Medicaid will cover nursing home costs and some at-home care, but only for the very poor; the income and asset limits are very low, leading some elderly or divorced couples to divorce to qualify for the care they need. If you die in a nursing home paid for by Medicaid, the state may put a lien on your house to recover the cost of keeping you alive, to punish your family for the crime of not having $100,000 a year to spare to pay for your care.
Obviously, the incentive is to provide as little as they can get away with, to cut costs.
States use assessment tools, usually contracted out to the private managed care companies that run Medicaid programs in most states, to determine whether someone is sick enough to require help and how many hours they need. Obviously, the incentive is to provide as little as they can get away with, to cut costs. Last year, The Washington Post wrote about a 108-year-old woman in Southeast Washington with dementia, who is bedridden and “prone to choking,” whose approved home care hours were reduced from 24 to 19. Clearly, it is very important for the District to claw back those extra five hours of unnecessary choking-supervision time from that greedy centenarian, at a time of a budget surplus. The District’s new assessment tool also recommended that another elderly woman have her hours reduced from 24 to eight, then to four; her daughter told the paper that when her mother was left alone for 15 minutes between care shifts on one occasion, she wandered to a department store and was arrested and hospitalized. These are the processes by which we decide whether and how to care for the people who once provided for us.
The fate of at-home Medicaid-funded care is grim. A 2017 piece in The New York Times warned that senior advocates believe that, if Medicaid funding is at risk, “care at home and in your nearby community will probably be cut first, given that Medicaid isn’t required to pay for that but is required to pay for nursing home care.” State budgets are already in dire straits because of the coronavirus pandemic. But even before the pandemic, “progressive” states like New York threatened cuts to Medicaid, which would affect their home health program. If the economic crisis is not accompanied by some large-scale reorienting of our priorities when it comes to care, we may see even less spending on this growing problem.
Medicaid, which is supposed to be a “safety net” program for the poor, now provides most of the funding for long-term care for the elderly and disabled, and the AARP estimates that 65 percent of nursing home patients are paid for primarily by Medicaid. (Remember how little money you have to have for Medicaid to consent to look after you.) Medicaid payments, as with other kinds of health care, are much lower than private or Medicare payments; I suppose the idea is that the caring for poor people should cost less, somehow, as if their bodies are healthier, instead of the opposite. Nursing assistants in nursing homes, who do much of the actual physical work of caring for patients, earn near-poverty wages.
Home health aides are similarly undervalued. These workers, mostly women, work long hours with difficult patients—patients who are confused, who may try to attack them, who won’t take their medications—for desperately low wages: an average of $24,200 a year. Many don’t even have health insurance of their own. Low Medicaid reimbursement rates make it hard for even privately paid aides to earn higher wages, so burnout and turnover are high. We could pay them more; we just don’t.
Most nursing homes are set up as for-profit businesses. This is a plainly terrible idea, even without the reams of evidence that for-profit homes are worse at caring for patients (and that private equity, in particular, has ruined yet another crucial part of our society). You do not have to be particularly left-wing to realize that the free market has not, will not, and cannot provide better conditions in nursing homes; instead, it will cut costs as far as possible to provide returns to shareholders, which means leaving Grandma to rot in her bed. Presumably, if you earn enough money running Dickensian nursing homes, you might avoid the fate of having to end up in one.
The combination of wretched conditions, extreme cost-cutting, and vulnerable patients has made abuse commonplace in these facilities.
The combination of wretched conditions, extreme cost-cutting, and vulnerable patients has made abuse commonplace in these facilities. Thousands of cases are reported each year, and the federal government has estimated that four out of five incidents go unreported. A 2018 analysis by Kaiser Health News found that most nursing homes are understaffed. Conditions in their kitchens are terrible, putting many residents at risk of food-borne illness. State regulators are asleep at the wheel. Facilities overuse “chemical restraints,” like antipsychotic medications, to sedate agitated patients, and are not punished for breaking laws surrounding the use of such drugs. In some states, state legislators who write the laws regulating nursing homes also work for—you guessed it!—nursing homes.
The coronavirus era has plainly shown how unprepared nursing homes were to deal with such a huge crisis, but equally how many of them are eager to grift and skim, even in the direst times. The Federal Trade Commission issued a warning recently that some nursing homes were coercing their patients into signing over their pandemic stimulus checks, falsely claiming that the facility can keep the payment if the patient is on Medicaid. Not all nursing homes are like this; but there’s little to create a floor for their greed, either.
In the last few years, Republicans discovered one weird trick for looking like they care about addressing the desperate financial needs of millions of Americans: letting them spend their Social Security or retirement money on things the government should be covering. Long-term care is no exception. In November, Republican Senator Pat Toomey proposed allowing people with retirement plans to spend up to $2,000 of their retirement funds each year on private long-term care, or LTC, insurance, without paying the taxes and penalties that usually apply to withdrawing those funds. The market for private LTC insurance is small and troubled—according to MarketWatch, there are only about a dozen companies that provide it, and premiums are high because there are few younger people who pay for it, which weakens the risk pool. This is why, MarketWatch says, this insurance is “best for people who have substantial assets—from net worths in the hundreds of thousands up.” For everyone else: Have you thought about dying before you get old?
Private LTC insurance is a bad way to pay for caring for our elder population, if you care about ensuring everyone has high-quality care. Around half of people aged 65 in 2016 will require long-term care at some point, with a federal report pegging the cost at $138,000 each. The question of whether you will need it or not is essentially a question of when you will die and how; whether it will happen suddenly or after a short illness, or at the end of a long decline. Requiring people to insure against this possibility themselves, instead of covering it through the government, is essentially telling people to spend large amounts of their money on a future that’s impossible to fathom and may never arrive, but only if they really want to do it. It’s quite the mixed message—and reminiscent of the stupidity of expecting people to decide whether to pay higher premiums for a low-deductible health insurance plan every year, requiring them to essentially guess how sick they’re going to be during the next year. Or whether they might get hit by a car. Ned Flanders was right to consider insurance a form of gambling.
You might say that it’s “sensible,” given the dire situation, for people to pay premiums to insurance companies to protect against the possibility they will need long-term care; the ruling-class scolds at CNBC will warn that not having LTC insurance can “devastate your financial plan,” as if it’s merely an oversight on your part and not the result of decades of terrible decisions by the government. (Also, what’s a “financial plan” to someone who’s lived through one bank-induced financial disaster only to “recover” into a second recession caused by a pandemic?) But the fact remains that most people simply can’t afford it. The New York Times interviewed a woman last year whose LTC insurance premiums doubled to $550 a month; insurance premiums have been rising for the last decade, the piece noted, since insurers “underestimate[d] how long policyholders would live” and “overestimated how many people would drop their policies, which meant insurers would not have to pay claims.” If only more people had died, all of this would have been cheaper.
We treat eldercare as an optional extra, as if it’s a reasonable choice simply not to pay for the cost of caring for an aging person. The coronavirus pandemic’s brutal effects on our nursing homes should show us the cost of this decision. Instead of atomizing these people and families, creating the horrible burden of deciding whether and how to care for their family members millions of times over, why don’t we just care for each other? This means improving our nursing homes: increasing their funding, which would be best achieved through a single-payer health insurance program that covers long-term care; strengthening oversight; and getting private players out of the business entirely. It means increasing, and I mean more than doubling, what we pay home health aides. It means facing up to what we currently let happen to anyone who has the temerity to get old without having a lot of money. We all have to die; we don’t have to die like this.
Libby Watson @libbycwatson
Libby Watson is a staff writer at The New Republic.