People who live in adult care homes receive $66 a month for co-pays, drug costs, snacks, clothing, transportation and other expenses.
Advocates say it’s not enough to lead a fulfilling life.
When Shirley Ann Whitfield Joyner set out from her assisted living center to be “with men for money,” her sister says, Joyner only wanted to pay for the things that made her feel human.
When Joyner lived in a Roper assisted living center, she resorted to going with men to pay for needs not met by her state-provided allowance, said Judy Vines Hendrickson of Sharpsburg. She told her late sister’s story to shed light on the indignities Whitfield endured while trying to meet her needs on the $66 a month the state allows residents of assisted living facilities: a combination of $46 from North Carolina’s State/County Special Assistance fund and a $20 exclusion from the person’s income.
That $66 per month for those in assisted living must cover some co-pays, some prescription costs, clothing, travel to destinations including church, any outing not provided by the center, snacks, cigarettes, etc. The amount has been in effect since 2003—despite a total 41% inflation in the past 17 years (it takes $1.41 in 2020 to buy what cost $1 in 2003). Nursing home residents receive $30 per month, unchanged since 1987; people in nursing homes have some expenses paid, such as medical visit copays and prescription drug costs.
“She was walking into stores asking people for money, being with men for money, trying to get money for various things she needed,” Hendrickson, 64, said of her sister, noting that she was paying for some needs out of her burial insurance policy. “Their shoes wear out; there are female things they need—the things that make them feel human.”
Joyner, the third of 10 children, died in 2016 at 58 after an extended period of poor health. The year before she had spent three months at an assisted living center in Roper, a small Eastern North Carolina town that she roamed asking for cash.
Some advocates for these vulnerable people living in North Carolina institutions have pushed the state legislature to boost the money provided to residents, called the personal needs allowance. In 2019 Hendrickson, Joyner’s sister, reached out to North Carolina Health News after reading of efforts to increase the amounts.
Last year, at a presentation before the General Assembly’s House Committee on Aging, representatives of the Division of Aging and Adult Services said it would cost $5.9 million to increase the personal needs allowance to $70 for more than 20,000 North Carolinians who receive special assistance in adult care homes. It would cost $7.16 million to increase the personal needs allowance from $30 to $70 for about 30,000 residents of nursing homes. The trade organizations for the assisted-living and nursing home industries are supporting the proposal.
Horrible and impossible
“Without someone’s paying attention to what it takes to live, we leave people vulnerable to exploitation,” said Corye Dunn, the policy director at Disability Rights NC, a nonprofit that’s part of a coalition formed to convince budget writers at the General Assembly to increase spending-money amounts.
“It sounds horrible and impossible, but people are so desperate to meet their basic needs so that they can live with some measure of dignity and some measure of autonomy, they believe it’s the best they can do to get a basic income,” she said.
Shirley Ann Whitfield Joyner grew up on a Greene County farm, where she started having behavioral health problems after a devastating barn fire killed her fiancé, her sister said. “She did graduate from high school and had a child, one daughter,” said Hendrickson, who works as a substitute teacher.
Joyner developed anxiety and depression, with her treatment hampered by the lack of psychiatric resources in her rural setting. She lived with her daughter but entered long-term care when relatives could no longer look after her.
Hendrickson was dealing with needs within her own immediate family, including a son, 41, who lives in a group home. Like other advocates, she hoped to make a difference in the fight to get adequate spending money in the hands of residents of long-term care in North Carolina.
“I would like to start some sort of group … I’m always trying to get things better for this kind of person,” Hendrickson said. “They need to listen. They need to have a meeting with us who deal with it every day.”
Too small to count?
Increasing spending money for long-term care residents would cost about $13 million, according to state estimates, out of a state budget of $24 billion for the Fiscal Year 2019-20. Normally the budget would be adjusted in 2020, but the state Legislature was unable to pass a single budget for 2020-21, so it passed only a few individual spending plans affecting “essential” areas of state spending. Increasing the stipend was not on the priorities list. Even progressive Democratic Gov. Roy Cooper did not include an increase in his 2019-21 two-year budget list or in his request for 2020-21.
“It’s a small amount, but there are an awful lot of small amounts,” Gary Pearce, a veteran political consultant who worked as senior policy adviser to former Gov. Jim Hunt. He argued the budget process tends to home in on huge initiatives that cost billions of dollars. Since the COVID pandemic arrived early in the year, nearly all spending has been disrupted in the state, with a focus on “public essentials” rather than individuals’ necessities.
In general, matters that touch older people require knowledge of Medicare, Medicaid, nursing homes, assisted living and others that legislators may not have mastered. “It’s just a very complicated issue and very few people understand it,” Pearce said. “Unless you are directly touched by it, you don’t understand it.
And, of course, many of the people who are touched by the difficulties of assisted living are lower-income people who aren’t politically active or knowledgeable. That could mean more residents, such as Shirley Joyner, will likely still do whatever’s necessary to pay for a few necessities of life.
“I think people shouldn’t assume because they don’t know about it that it’s not happening in the facilities where their loved ones live,” Dunn said.