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Trumpcare Could Bring Back an Epidemic of Abuse
Because we treat old age as a medical problem in the United States, health care policy change always has profound and far-reaching effects on conditions of life for the elderly. The health care bill currently before the Senate, if passed with its proposed cuts to Medicaid intact, is certain to produce drastic upheaval in the landscape of long-term care. That program is by far the largest source of funding for nursing home stays, supporting nearly two-thirds of long-term care residents. It is worth grappling with just how gruesome the results of cuts to it can be.
The idea that nursing homes are depressing places is an old one. But life inside nursing homes changes with historical circumstance. The age distribution of our population, the structure of the labor market and the design of our welfare state have produced many different configurations. Cuts as aggressive as those proposed in the Senate bill are bound to cause serious damage — and we have real historical experience showing how bad it can get.
It’s now largely forgotten, but a wave of institutional abuse swept through long-term care facilities in the 1970s. In that decade, there were abuse scandals and investigations in California, Connecticut, Illinois, Kansas, Michigan, Minnesota, New Jersey, New York, Ohio, Pennsylvania, Texas and Wisconsin. Reflecting on some of the evidence brought before his Senate subcommittee in 1975, Senator Frank Moss, Democrat of Utah, wrote that what he had heard was “something like a Dickens novel.”
The problem was systemic. Nursing home staff had too much to do in not enough time. At best, this meant neglect: Investigations found patients left in their own filth for days, infections and sores ignored, medical needs unmet and rehabilitation completely out of the question. “The dirt was indescribable,” testified one inspector to the United States Senate about homes she’d seen in New York. A doctor who treated patients from abusive nursing homes said they were often so dehydrated they couldn’t sweat or swallow. “The experience is so common in the hospitals in New York,” he testified, that “if you mention to a colleague that a new arrival is a nursing home patient, it means he is a comatose patient who has bedsores, is dehydrated and has pneumonia or urinary tract infection.”
At worst, patients were subjected to treatment close to torture. In a giant Pittsburgh-area nursing home, staff immobilized hundreds of patients every day because they could not manage their needs. If patients created “extra” work — for example, through incontinence — or spoke out about their treatment, they were subjected to punishment. Among countless such incidents, witnesses described seeing an aide spray cold water on the genitals of an African-American patient with diarrhea while insulting him with a racial slur. A woman named Dorthy, the neediest patient on her floor, had both diabetes and Parkinson’s, and was unable to move any part of her body except her mouth and her eyelids. When she asked for care, “she was screamed at, slapped and told to ‘shut-up’ many times by the staff.” Staff alternated starving and force-feeding her, and, according to eyewitnesses, played with the buttons on her adjustable bed, making it rock back and forth. A patient named Carrie, a blind woman, spoke out about the abusive conditions. The administration sent a psychiatrist to evaluate her, who described her as entirely clear-headed but recommended that she be committed if she continued not to cooperate.
While front-line staff were often the direct perpetrators of abuse, they did not cause the conditions that created it. The owners, administrators and policymakers who determined the shape of long-term care did that. When austerity strikes long-term care, it pits the workers — overwhelmingly likely to be underpaid and overworked women and people of color — against the patients, with results that can be horrifying.
The problem in the 1970s had deep roots. Previously, caring for older people was essentially unpaid women’s work, and only the extremely ill wound up in institutional settings. But the collapse of industrial employment and the single-breadwinner family in the 1970s, along with the passage of Medicare and Medicaid in 1965, drove a rising share of elder care into institutions. This process was especially pronounced in the areas we now call the Rust Belt, where prevailing economic arrangements were falling apart most rapidly, and the population was aging steeply as young people left to seek opportunity elsewhere. Demand for long-term care was rising while public budgets were crunched under pressure from de-industrialization and falling tax revenue. This was a recipe for abuse. It’s a pattern that the political theorist Nancy Fraser has labeled a “crisis of care,” a recurrent phenomenon occurring at economic transition points. The 1970s, at the end of the postwar economic boom, were one such moment. Now, in the long aftermath of the 2008 financial crisis, we are in another.
What the 1970s epidemic tells us is that the core dynamic leading to abuse in long-term care is the tension between declining funding and rising demand. This tension occurs when long-term processes of social change, like the aging of the population, coincide with short-term budget cuts. Long-term care is an extremely labor-intensive business, so wages and benefits are always the biggest line item in a nursing home’s budget — commonly as much as 65 percent of total costs. When Medicaid is cut, states will be forced to decrease the rates at which they reimburse nursing homes for care. Nursing homes will experience budgetary pressure, which will lead them to decrease the number of staff or the amount of time that staff can spend with patients.
Today, our entire society is aging steeply in the way that the Rust Belt did in the 1970s. While the supply of unwaged domestic care labor — that is, women who did care work for free — was diminishing rapidly then, the pool of such free labor is smaller still today. We will eventually need to expand and reinvent our elder care system to deal with these changes. We will need to pay more, not less, for care labor if we want something more humane than warehousing for our elders.
In the meantime, though, we already know what happens when we move in the opposite direction — not the hyperbolic death panels of 2009, but the sobering reality of a crisis of care. Just as the British Conservative Party saw its electoral fortunes reverse this spring after it proposed the so-called dementia tax, the Republicans will feel the sting of the harm they do if they enact these cuts. As a nonagenarian in an abusive Pennsylvania home said to a nurse’s aide, according to a 1975 report, “I curse you, I curse you — that you will live to feel 90 years old in your bones and will know what you’ve done to me.”