People who live in N.C. adult care homes receive $66 a month for co-pays, drug costs, snacks, clothing, transportation and more. Advocates say it’s not enough to lead a fulfilling life.

By Thomas Goldsmith

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.

Judy Vines Hendrickson, of Sharpsburg, 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.

“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 during a recent interview 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, the small Eastern North Carolina town she roamed asking for cash.

Some advocates for these vulnerable people living in North Carolina institutions are pushing the state legislature to boost the money provided to residents, called the personal needs allowance. Hendrickson, Joyner’s sister, reached out to North Carolina Health News after reading of efforts to increase the amounts.

At a March 26 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 fiance, her sister said.

“She did graduate from high school and had a child, one daughter,” said Hendrickson, her sister, 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 immediate family, including a son, 41, who lives in a group home. She’d like 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. The entire budget will likely land at $24 billion to $25 billion.

“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.

State Rep. Josh Dobson (R-Nebo) told members of the North Carolina Coalition for Aging on March 22 that school construction, tax policy and the overall level of state spending are likely to take up much of oxygen in budget deliberations this year.

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.

“I wonder if the people who are touched by it are mostly lower-income people who aren’t real politically active.”

Gov. Roy Cooper proposed a 2019-2021 budget without the increase for long-term care residents, with legislative proposals and a resolution still to come. Bill Lamb, executive director of Friends of Residents in Long Term Care, said the proposed PNA increase is going to be a “heavy lift” given other priorities for the General Assembly.

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.