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.
Vines Hendrickson
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.
The monthly personal spending money for people in adult care homes, or assisted living facilities, is $46 a month, supplemented by the first $20 of the resident’s income, with the rest covering the person’s room and board. This amount, unchanged since 2003, has to cover some co-pays, some prescription costs, clothing, travel to destinations including church, any outing not provided by the center, snacks, cigarettes, etc.
The allowance for people in skilled nursing facilities (commonly known as nursing homes) is $30 a month, an amount unchanged since 1987. However, people in nursing homes have some expenses paid, such as medical visit copays and prescription drug costs.
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This is very sad, as an advocate for senior wellness and safety, we must do more.
These people have worked in various ways to help communities, we must do more to help our seniors live productive and meaningful lives! I will write my legislators soon! Be Healthy Ministries Inc.
I am so happy that this story has been shared. This type of legal exploitation & oppression has been going on in North Carolina adult group homes, Assisted Living homes, and supervised living communities since, at least, the 1990s. I know, because that’s how long I’ve been in the field of Behavioral Health Care here. It’s disgusting. Group home owners, supervised living owners, and assisted living owners earn nice $$ off each individual. They could easily give each of their residents $200 a month and totally be okay.
Government gives so much to those who have never contributed adime to this country, they live better, eat better,overall get more freebies that cost more than the news media report. Meanwhile Amercan veterans, seniors, the mentally challenged, and children are left with unmet needs.
Thank you for shedding some light on the issues faced by people who live with disabilities. For people who live in the community on SSI (for disabled persons with no significant work history), their income is $750 month. Imagine paying rent, buying food, paying for utilities and personal needs, on that amount of money. To live in an assisted living or adult care home, the state will pay special assistance through Medicaid to help cover the cost of room and board, to make up the difference between what the person’s disability benefit pays for and what the cost of the facility is. Then the person gets just the small personal needs allowance.
But the government spends billions at the border.
Yes. When I mentioned ‘nice $$’ I was referring to the combination of the SSI money and the state provided special assistance. Other resources are also typically awarded as benefits e.g., supplemental nutrition assistance program (formerly known as food stamps)
I have reported family care homes for over a decade to DHHS’s DHSR. Nothing is ever done. In fact, my reporting resulted in a censuring of my license and the loss of 1000’s of $ Re: penalties and massive expenditure of time Re: trying to resolve the matter Re: the guardian who refused to allow the client access to the courts 2 try and reclaim some of the client’s own independence. So, there is no point to reporting as nothing changes. After a while, everyone throws in the towel—or gives up. The system is utterly broken. Cheers!: a PhD mental health provider
This has always been a huge concern for me.Not only do they get such a small amount monthly for personal use but what about the ones that can’t go shopping or have no family or a family not involved and have been in a facility for years….where is there money?These owners need to be audited yearly.There are very few owners of these facilities that actually care…it is all a money thing!!
I think it’s horrendous that the woman’s identity wasn’t masked in this article. It doesn’t matter that her sister offered the story, the journalist should have protected the woman. I’m not sure I would want my sister writing my obituary. I’m certain that had the woman been alive and had been asked of this story could use her name she would have said no, and would have sued the pants off of this site had you done so. I’m ashamed for you that you couldn’t see that exposing the woman’s identity was/is wrong. That is very poor journalism.
This has gone on for decades, and the “long term care” industry has not helped matters. Glad to know they are advocating some now, but what about a real investigation into how much the owners of these facilities are charging against how much profit they make? There is a long history of this industry being protected by our state’s legislature with some of them having family members invested in this lucrative business.
My concern is that the magnifying glass that is placed on this issue of personal funds per month should also be looking closely at rates being paid for “care” and safety against how much of it becomes profit for the owners. Also, how much are owners paying to develop and ensure the best staff for these complicated settings. THese are NOT the settings of the “frail elderly” for which they were developed decades ago, but are a catch-all for anyone found eligible related to disability. These are largely younger persons with mental health challenges who receive very little mental health support and whose staff almost never have had training with regard to supporting these individuals.
This is a very old and shameful issue that reflects poorly on our state.
For those of you mentioning how much owners or operators of group homes and/or assisted living facilities, you need to understand there has not been a rate increase from SA since 2009. While you may not understand what goes into costs of operating a facility, you should know that your own personal daily expenses (utilities, food, etc) has continued to increase each year. Owners and operators face that on a greater level. They have to provide room and board (roof over the head, food, utilities) insurance, property taxes, maintenance and repairs (you can’t even imagine those costs), and most DO provide a way to buy residents clothes, shoes, personal items, and even assist in burial costs when there is no family or burial insurance. Can you understand?
And, I don’t know of any legislators/families involved in group homes or assisted living facilities, but there are a tremendous amount of physicians and hospitals involved in nursing facilities, which take residents that should be in group home or assisted living settings, in turn costs medicaid/medicare – taxpayers – more money!
As with any business, owners get into a business to make money, to provide jobs, and owners/operators of assisted living facilities do that, AND take care of the frail, elderly, disabled and get very little credit for doing so on such a deficit amount of money. If they are able to make money, they should! Don’t you think? Because, if they are making money (AND taking care of residents like they should), they are some of the best business-minded people to be able to operate on so little, while provided a lot!