New pants to replace Alex Morisey’s tattered khakis will have to wait. There’s no more money for sugar-free cookies either. Even at the beginning of the month, the budget is so meager that Fixodent is a luxury. Now, halfway through, things are so tight that even a Diet Pepsi is overkill.
“How many years do I have left? asks Morisey, 82, who lives in a Philadelphia nursing home. “I want to live them as best I can. But to some extent, you lose your dignity.
In the United States, hundreds of thousands of residents of nursing homes are locked into a miserable situation: pushed into poverty, forced to give up all their income and left to live on an allowance as low as $30 a month.
In a long-term care system that subjects some of society’s most vulnerable to daily indignities, Medicaid’s Personal Needs Allowance, as the allowance is called, is among the most ubiquitous, but least known.
Nearly two-thirds of US nursing home residents have their care paid for by Medicaid, and in exchange, any Social Security, pension, and other income they would receive is instead redirected to pay their bill. The Personal Needs Allowance is intended to pay for anything not provided by the household, such as a telephone, clothes and shoes, or a birthday present for a grandchild.
One problem: Congress hasn’t increased the allowance in decades.
Alex Morisey listens to music in his bedroom at a nursing home in Philadelphia, Wednesday, Feb. 15, 2023. Across the United States, hundreds of thousands of nursing home residents are locked in a miserable stalemate: pushed into poverty , forced to hand over all earnings and left to live on an allowance as low as $30 a month. Pennsylvania’s allowance is $45.
“It really is one of the most humiliating things for them,” says Sam Brooks, attorney for The National Consumer Voice for Quality Long-Term Care, which advocates for nursing home residents and has called for an increase in allocation. “It can really be a point of shame.”
Especially when a person does not have close relatives or anyone able to help them financially, the allowance can create a crying need. When Marla Carter visits her mother-in-law at a nursing home in Owensboro, Kentucky, the scene feels more like a 19th-century hospice than modern-day America. With only a $40 stipend, residents are dressed in ill-fitting second-hand clothes or hospital gowns that open. Some have neither socks nor shoes. Basic supplies are running out. Many don’t even have a pen to write on.
“That’s what surprised us the most,” says Carter, “poverty.”
She was so horrified that she and her husband started a nonprofit organization, Faithful Friends Kentucky, to distribute items to residents of area nursing homes. Among the most warmly received things are Kleenex tissues, as establishments often stock scratchy generics and even these can be hard to find.
“You bring a soda or a toothbrush and they’ll be so excited,” she says. “It’s so sad for me.”
Medicaid was established in 1965 as part of Lyndon B. Johnson’s Great Society programs. A 1972 amendment established the Personal Needs Allowance, set at a minimum of $25 per month. Unlike other benefits such as Social Security, increases in the cost of living were not built into the Personal Needs Allowance rules.
If it had been linked to inflation, it would be around $180 today. But Congress only raised the minimum rate once, to $30, in 1987. It has remained there ever since.
Some politicians have tried to address the issue, including Representative 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 of social Security. He wasn’t even heard.
“I was shocked,” Wexton says. “It’s a matter of dignity for these people.”
Medicaid is administered jointly by individual states and the federal government, and in the face of federal inaction, states have taken it upon themselves to increase benefits. Even so, most remain weak. A majority of states — 28 — have benefits of $50 or less, according to a state-by-state survey by the American Council on Aging. Pennsylvania is part of that majority, with a monthly allowance of $45.
Only five states give residents $100 or more each month, including Alaska, which is the only one to offer $200 a month, the maximum under federal law. Four states — Alabama, Illinois, North Carolina and South Carolina — remain at the $30 minimum.
Despite these paltry awards, some facilities have been cited for not telling residents they were entitled to an allowance, for not providing the money, or for spending the funds without their permission. And although federal regulations outline a host of items that must be provided to nursing home residents, many find themselves unable to use the inexpensive items offered by the facilities, spending their allowance to replace the institutional-grade soap that making them dry and itchy, fabrics that look like they came out of a bus station toilet, razors that leave a cut and bleeding face, and denture adhesives that seem unable to hold false teeth in place. place.
Some homes are bending the rules, forcing residents to 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 shower gel, toothpaste , deodorant and some items. facility used to provide, but has reduced, wipes and diapers. “Think of the prices of everything tripled and quadrupled. And the money didn’t go up.
Hackney, a retired appliance technician who has been using a wheelchair since a motorcycle accident nine years ago, has a daughter who pays for her cellphone and a church that sends care packages. But even a modest increase in allocation, says Hackney, would mean a ton.
“It would change so many lives here,” he says.
Down the hall, Janine Cox, 56, occasionally gets a bag of potato chips from the vending machine and snails 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 said. “Politicians, they have to go into these nursing homes and look and see how some of us are living.”
It leaves many people feeling trapped with no chance of normalcy.
Before a fall that landed her in a nursing home in Toluca, Illinois, Nancy Yundt, 62, felt like life was relatively comfortable. His house was small and needed work, but it was his house. Her SUV was 18 years old with 160,000 miles on the clock, but she loved it. Her monthly disability check for $2,373 left room for a housekeeper and takeout and lots of generosity.
She paid her son’s cellphone and insurance bills, bought everyone Christmas presents, and adored her family’s little ones all year round.
But when her great-niece’s second birthday came a few months after she arrived at the care home last year, she wanted to buy a doll but found she couldn’t.
“The aunt who spoils cannot spoil,” she said. “It just makes me a little sad.”
Nursing home residents often have to hand over control of everything from how often they shower to what they eat. Without financial leeway, even more autonomy evaporates, putting out of reach the possibility of taking a taxi to see a friend, getting lost in a freshly bought book or escaping the monotony of the cafeteria with a few take away food.
Even after two years of institutionalized life, it’s a disconcerting truth for Morisey.
He ended up in a nursing home after a fall and, once there, learned that 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.
Alex Morisey calculates his finances and how much he would have left if he bought some pants, Wednesday, Feb. 15, 2023, at a Philadelphia retirement home.
Can its razors last a little longer to delay refills? Can he get a little more out of the Fixodent tube? Did he cut enough corners to get aftershave or peanut butter crackers?
“It’s the little things,” he says. “You don’t think about those things until you don’t have them anymore.”
When something more expensive needs to be replaced, it’s even more difficult, like when shirts disappeared in the laundry or the top of his thermos broke or his little Bluetooth speaker no longer held up. dump.
His meager savings are almost gone now. Without the help of his church, he couldn’t even afford a phone.
Living simply is central to Morisey’s Quaker faith, and he decided after college, graduating from the Ivy League, that he wouldn’t use it to chase wealth. He has held jobs in non-profit organizations, lending his skills to farm workers, social housing tenants and the mentally ill, and as an aid worker in Central and South America. He spent each of his 82 years squarely in the middle class.
Looking back, Morisey wouldn’t change the way he lived his life. But it doesn’t seem like a stretch, he says, to ask for a soda.
