By MATT SEDENSKY
AP National Writer
PHILADELPHIA (AP) — 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 modern-day 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 generics and even those can be hard to come by.
“You bring a soda or a toothbrush and they’ll get so excited,” she says. “It’s so sad to me.”
Medicaid was created in 1965 as part of the Great Society programs of Lyndon B. 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. It has remained there ever since.
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.”
Hackney, a retired appliance technician who has used a wheelchair since a motorcycle accident nine years ago, has a daughter who pays his cell phone and a church that sends care packages. But even a modest boost to the allowance, Hackney says, would mean a ton.
“It would change so many lives in here,” he says.
Down the hall, 56-year-old 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.
“It’s like a fight for them to survive another day,” she says. “The politicians, they need to come inside these nursing homes and look and see how some of us are living.”
It leaves many feeling trapped with no chance of normalcy.
Before a fall that landed her at a nursing home in Toluca, Illinois, 62-year-old Nancy Yundt felt like life was relatively comfortable. Her house was small and needed work, but it was home. Her SUV was 18 years old with 160,000 miles on the odometer, but she loved it. Her $2,373 monthly disability check left room for a housekeeper and take-out food and plenty of generosity.
She paid her son’s cellphone and insurance bills, bought Christmas presents for everyone and doted on her family’s little ones year-round.
But when her grandniece’s 2nd birthday came a few months after she arrived in the nursing home last year, she wanted to buy a doll but realized she couldn’t.
“The spoiling aunt can’t spoil,” she says. “It just makes me feel a little sad.”
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 take-out 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? Has he cut corners enough to get some aftershave or peanut butter crackers?
“It’s the little things,” he says. “You don’t think about these things until you no longer have them.”
When something pricier needs replacing, it’s even more of a quandary, like when shirts went missing in the laundry or the top broke on his thermos or his little Bluetooth speaker no longer held a charge.
His meager savings are nearly gone now. If not for help from his church, he wouldn’t even be able to afford a phone.
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, and as an aid worker in Central and South America. He has spent each of his 82 years squarely in the middle class.
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.
Matt Sedensky can be reached at firstname.lastname@example.org and https://twitter.com/sedensky