Albert P. died alone in a nursing home from Covid-19. because of new safety regulations, his daughter, Gita, was not allowed to visit. In the days before his death, she told me, the nursing home staffers “spoke to my mom at length about how great my dad was doing…. [They] said, ‘He’s eating. He’s drinking water. He’s smiling. He’s doing really well.’”
Gita wasn’t so sure. She said there were previous issues with her father’s care: hours spent sitting in soiled bedsheets, medication mismanagement, and missed meals.
On May 6, a staff member called to tell her that Albert, 79, had died. She had never been told that her father was even ill. Then she was asked, “When are you going to come to claim the body?”
Gita remembered hanging up the phone. “I didn’t know what to do.”
Albert’s death was no outlier. More than 40 percent of Covid-19 deaths in the United States—about 62,000 people as of July 30—have been linked to long-term care facilities, according to the Centers for Disease Control and Prevention. About one in 37 nursing home residents have died of Covid-19. New York Governor Andrew Cuomo described the threat of the disease in nursing homes as “fire through dry grass.”
The rapid spread of infection in nursing homes isn’t new. Before the pandemic, 82 percent of nursing homes had citations for failure to adequately prevent or control the spread of infection; about half had multiple citations. Opportunistic infections by pathogens like Clostridium difficile thrive in nursing homes, and those usually caused by neglect, like sepsis and urinary tract infections, are prevalent. Covid-19 just spreads more easily and does its deadly work faster.
In New York magazine, music and architecture critic Justin Davidson recently imagined what it would take to build better nursing homes in the wake of Covid-19. Perhaps if we had smaller facilities or installed wet bars, people would like them better. He emphasized the need for more funding. But the problem with nursing homes is not that they need wood floors instead of vinyl or that food is served on plastic trays. The problem is that they are total institutions: secluded facilities where staffs tightly control the lives of vulnerable people.
There is some debate over the origin of the total institution as a concept, but it is usually credited to the sociologist Erving Goffman. In his 1961 book Asylums, he described total institutions as “an assault on the self.” In a nursing home, patients depend on and are at the mercy of the staff. Patients do not choose with whom they live or what activities they can do on a given day. It is, he wrote, entirely opposed to the way normal society functions.
Nursing homes allow for an economy of scale. Feeding, washing, and otherwise seeing to the needs of elderly and disabled residents all at once is more efficient than addressing those needs on an individual basis. But this efficiency comes at the expense of human dignity. Ari Ne’eman, a senior research associate at the Harvard Law School Project on Disability, points out, “From Grandpa Simpson to Junior Soprano, popular culture constantly acknowledges our society’s worst-kept secret: Nursing homes are awful places to live. Unfortunately, we’ve set up our health care and human services systems to send vast numbers of seniors and people with disabilities there anyway.”
That leaves us with a few basic questions: Why do nursing homes exist? How have they so thoroughly embedded themselves in the American life cycle? And what can we do instead?
Nursing homes are relatively new. Before the 20th century, all kinds of care—elder care and even surgery—were performed at home. The wealthy could hire servants to tend to the needs of their elderly relatives. Among those less well-off, women were expected to take on the bulk of the caregiving, uncompensated. And for those who were poor and without families capable of caring for them, there were almshouses.
Almshouses sheltered the “undeserving” poor: the disabled, the ill, children born out of wedlock, widows, and elderly people in poverty. Poorhouses were, for the most part, dilapidated and dirty and were seen as a last resort for human refuse. On Blackwell’s Island, now Roosevelt Island, in New York City hundreds of beds were squeezed so tightly together that the residents had difficulty getting in and out of them, according to Thomas Cole’s The Journey of Life: A Cultural History of Aging in America.
By the early 20th century, more specialized institutions opened to address the disparate needs of people who had relied on almshouses. These included schools for the blind and the deaf, orphanages, mental asylums, and homes for wounded veterans. As a result, the percentage of people in almshouses who were elderly soared. In 1880 about a third of almshouse residents were elderly; by 1923, that share of residents had doubled. In 1903 the New York City commissioner of charities announced that the almshouse on Blackwell’s Island would change its name to the Home for the Aged and Infirm.
The Great Depression overwhelmed and ultimately destroyed the almshouse system. Suddenly, millions of Americans were in poverty. This gentled public opinion toward the poor. The public turned against almshouses and embraced cash benefit programs. This shift culminated in the Social Security Act of 1935 and the advent of a federal welfare system. The act was meant to usher in an era in which senior citizens could pay to support themselves in their own homes.
To facilitate this goal, the legislation prohibited the use of federal funds for “an inmate of a public institution,” cutting off support for locally run almshouses. Unfortunately, it did not provide money for home health care or assistance with activities like feeding and washing. Private rest homes for the elderly stepped in to fill the void. Although it was supposed to end institutional care for senior citizens, the Social Security Act only refashioned it.
In 1960 amendments to the act radically increased nursing home funding. Between 1960 and 1965, federal spending on nursing homes ballooned from $47 million to $449 million a year. The advent of Medicaid in 1965 expanded nursing homes even further. Nursing home capacity more than doubled from 1963 to 1973.
Congress amended Medicaid in 1967 to include a definition of a skilled nursing facility and to require 24-hour nursing services and stricter building codes. Many of the smaller, older rest homes were unable to meet these new requirements, so larger, more hospital-like nursing homes took their place. But these more medicalized facilities weren’t much better. In order to turn a profit, many still spent as little as possible on residents. In his 1980 book Unloving Care: The Nursing Home Tragedy, Bruce Vladeck describes post-reform nursing homes “with green meat and maggots in the kitchen, narcotics in unlocked cabinets, and disconnected sprinklers in nonfire-resistant structures.”
In 1981, Congress amended the Social Security Act to allow for home- and community-based services waivers. Before that, seniors and disabled people could get comprehensive long-term care only in institutional settings like nursing homes; if they remained at home and wanted such care, they had to pay for it out of pocket. The new HCBS waivers allowed Medicaid to fund comprehensive care at home.
Even though three out of four people over the age of 50 want to remain in their homes, according to a 2018 AARP survey, the system remains weighted toward nursing homes and other forms of institutional care. Despite scandal after scandal and reform cycle after reform cycle, federal spending on nursing homes was $57 billion in 2016. The American Health Care Association, the largest lobbying group for the industry, spent $3.84 million in 2019 in its push to further loosen safety regulations and reduce the industry’s legal liability. And the resulting solution to lawsuits over poor conditions? In July, President Donald Trump announced $5 billion in additional funds.
Technically, all seniors who meet the financial criteria should have access to home care through Medicaid. But despite legal requirements, seniors and families are rarely informed of this option. Jennifer Goldberg, the deputy director of Justice in Aging, pointed out that “far too often, hospitals and nursing homes don’t tell older adults how they can get the care they need in their homes and communities.”
In 2017, when Albert first entered the nursing home, it was meant to be a temporary stay for rehabilitation, with the cost covered by Medicare. He had experienced some kidney trouble. A nursing home, according to Gita, was the only option given.
Initially, Albert seemed to be doing well. But days before he was supposed to be discharged, he contracted a C. difficile infection, which can be deadly and is spread mostly in hospitals and nursing homes. his health declined rapidly. He lost a dangerous amount of weight, and it became clear that he would not be returning home within the time allotted by Medicare. Then he came down with pneumonia. Eventually, he also developed contractures—painful tightening of the tendons and joints from months of disuse. He bounced from nursing home to hospital to nursing home. And at no point, according to his daughter, was his family offered an alternative.
“Had staying at home been an option, I don’t think we would have ever put him in a nursing home,” Gita said.
According to the Kaiser Family Foundation, nearly three-quarters of national long-term services and support spending for seniors goes to institutions like nursing homes. Nursing homes are an entitlement, which means seniors have immediate access to them through Medicaid. Home care, on the other hand, has waiting lists. In 2017 there were 201,000 seniors and adults with physical disabilities waiting for Medicaid-funded home care. Nationally, the average wait for an HCBS waiver is two and a half years.
Why do waiting lists exist for a service delivery model clearly preferred by most Americans? And why wouldn’t case managers tell seniors about all of their options? Nicole Jorwic, the senior director for public policy at the Arc of the United States, a part of the Disability and Aging Collaborative, gave one possible explanation. “If a case manager is talking about discharge options for an individual, [an HCBS waiver] waiting list may last longer than the individual may live,” she said.
Another barrier to the wider adoption of home care in the United States is that nursing home associations and unions lobby against it. The associations’ reasons are self-evident: They are protecting their business interests. Trade unions have historically opposed home care because home care workers are less likely to be unionized. In general, they also have lower pay and less job security. Even with home care workers unionizing in recent years, the pay remains low and the hours long. Most of these workers are immigrants and women of color, and the turnover is immense: Every year, two-thirds of home care workers quit.
In order to expand and improve home care, workers need higher pay, better benefits, and more job security. In short, they need to be treated as the essential workers they are.
Then there are the more literal, physical barriers to home care. Stairs and bathtubs can become unusable for elderly residents. Carpets and coffee tables can be deadly hazards. There is a shortage of accessible housing in America. This problem, at least, has a straightforward solution: Pay to make existing housing accessible. The Community Aging in Place–Advancing Better Living for Elders (CAPABLE) initiative at the John Hopkins School of Nursing piloted a successful home-based intervention a decade ago, and the program has been expanded. A registered nurse, an occupational therapist, and a construction worker meet with a senior at home, evaluate the person’s needs, and renovate the home for accessibility. According to CAPABLE, every $1 spent on the program yields nearly $7 in savings.
But what about seniors with severe disabilities like dementia? Many people think it is impossible for a person with dementia to live safely outside a locked facility. Jorwic, whose organization represents many Americans with significant cognitive disabilities, disputes that.
“When it comes to serving individuals with dementia, it can be really difficult for families, service providers, and staff to see how that person can live outside of a [nursing home], and it is important to note that the same security can be done in a home- and community-based setting,” she said.
The idea that anyone can live independently given the right supports is prevalent in discussions about disability but less common in ones about aging. Appropriate staffing is key: People with more significant disabilities may need more staff to assist them in their everyday lives.
The idea of a greatly expanded home care workforce and widely available individualized care brings up the issue of cost. According to the National Council on Disability, an independent federal agency, home- and community-based services have proved to be significantly less expensive than institutional care in every state that tracks the data. But the current level of home care is not always sufficient to meet an individual’s needs. Costs are held low by Medicaid reimbursement caps, the exploitation of home care workers, and red tape: Navigating Medicaid home and community-based services can be a Kafkaesque nightmare. People sometimes die before they’re able to access adequate care.
Finally, there is the prevailing cultural idea that nursing homes are inevitable: We are born, we work, we retire, we go to a nursing home, we die. But there is nothing inevitable about nursing homes.
Through his work in disability rights, Kelly Buckland, the executive director of the National Council on Independent Living, has been championing ways to end the nursing home model for the past 30 years. Oddly, many people who support community living for younger disabled people still think of nursing homes as necessary for seniors.
“There’s this underlying belief that when you get old, that’s where you go,” Buckland said. “But no one goes to a nursing home because they’re old. They go there because they have a disability.” He and other disability rights advocates envision a world with home care for everyone: no more institutions. To some, it may seem like an absurd dream, but all we need is the political will to make it happen.