In nursing homes, living on pennies
Allowances required for Medicaid paltry, unchanged since ’87
PHILADELPHIA — New pants to replace Alex Morisey’s tattered khakis will have to wait. There’s no cash left for sugar-free cookies, either. Even at the month’s start, the budget is so bare that Fixodent is a luxury. Now, halfway through it, things are so tight that even a Diet Pepsi is a stretch.
“How many years do I have left?” asks 82-year-old Morisey, who lives in a Philadelphia nursing home. “I want to live those as well as I can. But to some degree, you lose your dignity.”
Across the U.S., hundreds of thousands of nursing home residents are locked in a wretched bind: Driven into poverty, forced to hand over all income and left to live on a stipend as low as $30 a month.
In a long-term care system that subjects some of society’s frailest to daily indignities, Medicaid’s personal needs allowance, as the stipend is called, is among the most ubiquitous, yet least known.
Nearly two-thirds of American nursing home residents have their care paid for by Medicaid and, in exchange, all Social Security, pension and other income they would receive is instead rerouted to go toward their bill. The personal needs allowance is meant to pay for anything not provided by the home, from a phone to clothes and shoes to a birthday present for a grandchild.
One problem: Congress hasn’t raised the allowance in decades.
“It’s really one of the most humiliating things for them,” says Sam Brooks, an attorney for The National Consumer Voice for Quality Long-Term Care, which advocates for nursing home residents and has urged an increase in the allowance. “It can really be a point of shame.”
Especially when an individual has no close relatives or no one able to financially help, the allowance can breed striking need. When Marla Carter visits her mother-in-law at a nursing home in Owensboro, Kentucky, the scene feels more 19th-century poorhouse than modernday America. With just a $40 allowance, residents are dressed in ill-fitting hand-me-downs or hospital gowns that drape open. Some have no socks or shoes. Basic supplies run low. Many don’t even have a pen to write with.
“That’s what was so surprising to us,” Carter says, “the poverty.”
She was so horrified that she and her husband started a nonprofit, Faithful Friends Kentucky, to distribute items to area nursing home residents. Among the things most warmly received are Kleenex tissues because facilities often stock scratchy generic brands, and even those can be hard to come by.
“You bring a soda or a toothbrush, and they’ll get so excited,” Carter says. “It’s so sad to me.”
Medicaid was created in 1965 as part of the Great Society programs of President Lyndon Johnson. A 1972 amendment established the personal needs allowance, set at a minimum of $25 monthly. Unlike other benefits like Social Security, cost-of-living increases were not built into personal needs allowance rules.
Had it been linked to inflation, it would be about $180 today. But Congress has raised the minimum rate only once, to $30, in 1987, where it has remained.
Some politicians have tried to fix the problem, including Rep. Jennifer Wexton, a Democrat from Virginia who in 2019 introduced a bill to raise the minimum allowance to $60 and cement annual increases tied to those for Social Security. It didn’t even get a hearing.
“I was shocked,” Wexton says. “It’s about dignity for these people.”
Medicaid is jointly administered between individual states and the federal government and, faced with federal inaction, states have taken it upon themselves to raise allowances. Even so, most remain low. A majority of states — 28 — have allowances of $50 or less, according to a state-by-state survey by the American Council on Aging. Just five states grant residents $100 or more each month, including Alaska, which stands alone in offering $200 monthly, the maximum under federal law. Four states — Alabama, Illinois, North Carolina and South Carolina — remain at the $30 minimum.
Despite such paltry allotments, some facilities have been cited for not telling residents they were entitled to an allowance at all, for failing to provide the money or for spending the funds without their permission. And though federal regulations outline a host of items that are to be provided to nursing home residents, many find themselves unable to use the cheap items facilities offer, spending their allowance on replacements for institutional-grade soap that makes them dry and itchy, tissues that feel like something out of a bus terminal bathroom, razors that leave a face nicked and bleeding, and denture adhesives that seem incapable of keeping false teeth in place.
Some homes skirt the rules, making residents pay for things like diapers or haircuts that are supposed to be included.
“As soon as I get it, it’s gone,” says Chris Hackney, a 74-year-old resident of a nursing home in Durham, North Carolina, who spends his $30 monthly allowance on body wash, toothpaste, deodorant and some items his facility used to provide but has cut back on, wipes and diapers. “Think of the prices of everything that tripled and quadrupled. And the money hasn’t gone up any.”
Down the hall, 56-yearold Janine Cox gets an occasional bag of chips from the vending machine and scrimps to add to the collection plate at church. She says her neighbors are even worse off.
“The politicians, they need to come inside these nursing homes and look and see how some of us are living,” she says.
Nursing home residents often must cede control of everything from how often they get a shower to what they eat. With no financial wiggle room, even more autonomy evaporates, putting out of reach the chance to take a taxi to see a friend, to get lost in a newly purchased book or to escape the monotony of the cafeteria with some takeout food.
Even after two years of institutionalized life, it is a confounding truth for Morisey.
He ended up in a nursing home after a fall and, once here, learned his income would no longer be his. Pennsylvania’s allowance is $45, and after a monthly $20 haircut and $5 tip, a juggling act begins.
Can his razors last a bit longer to put off refills? Can he squeeze a bit more out of the Fixodent tube?
Living simply is at the heart of Morisey’s Quaker faith and he decided after college, Ivy League diploma in hand, that he wouldn’t use it to chase wealth. He took jobs in nonprofits, putting his skills to the aid of farmworkers, public housing tenants and the mentally ill.
Looking back, Morisey wouldn’t change how he lived his life. But it doesn’t seem too much, he says, to ask for a soda.