Low Medicaid allowances leave nursing home residents behind
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.”
Related: Transitions to post-acute care are getting even more challenging
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 an allowance 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 is 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 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.”
Not a Modern Healthcare subscriber? Sign up today.
Medicaid was created in 1965 and a 1972 amendment established the personal needs allowance, set at a minimum of $25 each month. Had it been linked to inflation, it would be about $180 today. But regular cost-of-living increases were not built into the allowance and 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.”
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.
“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.
Download Modern Healthcare’s app to stay informed when industry news breaks.
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. Her neighbors are even worse off. “It’s like a fight for them to survive another day,” she says.
With no financial wiggle room, nursing home residents find what little freedom they have evaporates even more, 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.
With each $45 allowance he receives, a monthly 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.”
He is a lifelong Quaker, has always cherished living simply, and accepts his situation with a smile. But it doesn’t seem too much, he says, to ask for a soda.