By Thomas Goldsmith
A proposal to increase the amount of money available to North Carolina’s long-term care residents raises a compelling question: How much does a person need to live on, once room, board and medical care are provided?
Interviews with long-term care residents on Medicaid and others familiar with their spending show that the answer depends on what you mean by “live.”
“OK, do I pay for medicine? Or do I pay my phone bill?,” said Michael Rubins, 30, a resident of Oak Hill Assisted Living Community in Harnett County. “Or how am I going to get toiletries next month?
“What if I want to go to a movie or just do the things that most people take for granted?”
Forget the movies; advocates pushing for a change in the amount — $30 for nursing home residents, since 1987 and $66 for those in assisted living, since 2003 — point out that the amounts are too little to cover basics such as co-pays for medicine, toiletries and phone service, let alone quality-of-life choices many people would not consider forgoing.
Autonomy and dignity
“Without means, people are restricted in choice,” said Teresa Troup, a former executive director of the North Carolina Adult Day Services Association and long-term care administrator.
“Do I make the co-pay or do I go out to eat with people that can leave the facility and I’ve never gotten to go?”
At Disability Rights NC, policy director Corye Dunn works as part of a coalition of nonprofit groups that will push legislators to raise the personal needs allowance, or PNA, to $70 a month, both in assisted living facilities and in more medically intensive nursing homes.
“Raising the PNA is an important part of giving greater autonomy and dignity to residents of facilities,” Dunn said.
Dunn and others have been shocked by accounts of people in facilities who have traded sex for items that pocket money could have financed (see box, bottom). However, it’s much more common for short funds to cause daily stress and exclusion, residents said.
In addition, the separate economic reality that residents face heightens their feelings of isolation from society, said Rubins, who has cerebral palsy.
“I hate to put it so harshly, but the sad reality is that it seems like nobody cares,” he said, “Just as long as Mike’s breathing it’s good enough.”
What does it cost to live?
The nonprofit group Friends of Residents in Long-Term Care is pushing an increase in the PNA, charging that inflation means that residents of North Carolina skilled nursing centers can buy less than half of what they purchased when the amount was set in 1987.
According to the financial publisher Kiplinger, incidentals such as transportation, occasional meals out and clothing can easily add up to 15 percent of a single person’s income.
North Carolina wage earners make a median income of $46,438. Taking 15 percent as a modest share for the incidentals long-term care residents have to cover, that amounts to $580 each month. That works out to $19.33 a day, an amount that for many can disappear quickly given a meal out, some coffee and some gas, not to mention toiletries or a new pair of shoes now and then.
And that doesn’t take into consideration co-pays for medication, which adult care residents have to pay along with everyone else. Even at a $3 to $5 copay apiece, this category can eat up most of the $66 personal needs allowance.
“We speak up”
Jeff Horton, executive director of the NC Senior Living Association, an adult-care home trade group, said the industry supports an increase in the personal needs allowance. Horton noted that the additional money — projected to be about $14 a month — would mean more North Carolinians would qualify for Medicaid.
“It wouldn’t be more than a few,” Horton said.
Making the change in assisted living would cost about $3 million annually according to his “back of the envelope” calculations, he said. Changing the amount in skilled nursing facilities, because of the greater gap, would cost much more, into the tens of millions.
Rubins and his roommate Rob Bailey, 39, who has Multiple Sclerosis, will be watching the legislative process, both as residents and as board members of the advocacy organization Friends of Residents in Long Term-Care.
“We speak up for people who can’t really speak for themselves,” Bailey said.
Dunn, at Disability Rights, said people living in the community can make choices such as eating food that’s culturally specific, something that long-term care residents might long for.
“Because I have access to some amount of money, I am able to choose what I eat, and what I watch and what I wear and where I go and how I live,” Dunn said. “Many of our clients at adult care homes do not have that same ability, because $66 a month doesn’t get you very far.
“The fewer choices and the smaller your world is while you’re in a facility, the harder it is to leave because you don’t see what else is possible … you don’t interact with people outside of the walls of that facility as much,” she said. “Restoring some measure of dignity and autonomy to residents of facilities is also a means to helping folks who want to leave.”
According to statements in an April 7, 2016 state report of deficiencies at Cedarbrook Residential Center, an adult care home in McDowell County, “there was lots of sex for cigarettes going around the facility.”
Another resident “prostituted herself for sodas,” the report said, quoting staff members. In both situations, other residents took part in the sex acts.
Corye Dunn, policy director at Disability Rights NC, said the use of sex for cash or barter is not common among long-term care residents in the state.
“Thank goodness,” she said. “It would be a different conversation if we thought this was happening in every facility.
“If you’re placing people in a facility because they’re vulnerable, and then someone wants to take advantage of that vulnerability, it’s tough to build enough walls to safeguard against it.”
Craig Burrus, assistant division director for economic and social services in Wake County, said he had not heard of such behavior, but did not doubt that it took place.
“Male or female, if you’re in an assisted living facility, you’re getting $66 a month for personal needs,” Burrus said. “I wouldn’t be too surprised that there might be people out there doing that.”
Michael Rubins, a resident of Oak Hill Assisted Living Community in Harnett County, said the system of exchanging items is like the bartering that goes on in prisons.
“It’s like okay, you’ve got that amount of Rice Krispy Treats — I’ll give you this many cigarettes,” Rubins said. “I’ve never heard of sexual exchanges for stuff but it’s very possible.
“Yes. Very, very possible.”
Correction: This story originally stated the personal needs allowance for skilled nursing home residents was $50, it is actually $30, but for those people, their medication co-pays and toiletries are covered.
For clarification, the $66 allowance going to adult care home residents consists of $46 from Medicaid plus an additional $20 a month through the General Income Exclusion.
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First, if your going to report something, get the amounts correct. PNA for Nursing is $30/mth, not $50. And yes, people in Nursing Homes, ICF/MR, AFL, etc. do need more than $30. Medicaid only pays $10 for haircuts. Hairdressers charge a lot more than that, and the people who still have their mind about them, want to keep the style they’ve always had. Its not just the elderly residing in these homes. Medicaid recipients don’t have money to pay for a private phone line, cable tv, etc. There is no “personal enjoyment” for them once they are placed in a facility. They are treated like prisoners who are allowed to go eat three meals a day and a bed to lay their head.
Just remember, we all will be old one day. What and how will you want to be treated?
There is more residents than you think trading sex for cigarettes and other things
They do the same things in these prisons, I’m told.
I personally had a member of my family doing this, while she lived in an assisted living facility. It got so bad we had to find another placement for her.
So it is real. I feel their money should be raised for COL, just like other disabled people through Social Security.
I am a NC Assisted Living Administrator and Certified Dementia Practioner with years of experience in the non-profit sector and also working in predominently funded Medicaid facilities before transitioning to private pay communities. The16+ years of holding this position proved that there is much to be desired in the Medicaid system.
The personal care dollars in assisted livings does not allow for anything other than what the facility can provide in terms of recreation, creativity, and socially. The facilities are operating on a bare bones budget due in large part to the reimbursement from the state for the care being provided and it is not working. Sadly, the residents are the ones caught in the middle forced to accept whatever is donated or offered.
Many residents recluse, come out of their rooms to eat only and if lucky you may see them at one activity a week (if lucky). This is s setback for each one as they have once again experienced a loss (loss of how they once lived ) due to an illness, injury or age. In 2019 why should this be?
Residents want to get out, be part of the community at large, enjoy being an active participant in everyday activities of life including socially, mentally, emotionally and physically. This requires more than $66 per month in personal care $ to cover medication costs, toiletry items, hair cuts/color, cell phone, clothes/shoes, and glasses. These are the basics. Could you make $66 stretch to cover all of this?
There needs to be major changes!