black and white image of a Rocking Chair on a porch with dappled shade
Credit: Ava Lowery, Flickr Creative Commons

As lawmakers work on a fix to the problem of funding for group homes, owners and operators of adult care homes throughout the state are hoping they will also address recent cuts in reimbursement for Alzheimer’s care.

By Rose Hoban

Diane Barham has been in the adult care home business for several decades. She had one of the first special care units for Alzheimer’s disease patients in Raleigh, but now she worries about staying in business.

Rocking Chair
Rocking Chair image courtesy of Ava Lowery, Flickr Creative Commons Credit: Ava Lowery, Flickr Creative Commons

Barham runs one 40-bed home in Pamlico County now, with 12 Alzheimer’s patients living in a special care unit. Recently, she was told that several of her patients no longer qualified for personal care services reimbursed by Medicaid.

“I have a lady in our special care unit, she’s 81, with a diagnosis of Alzheimer’s disease, also failure to thrive. She had lost weight and she was brought to us by Adult Protective Services because she was living alone and wasn’t eating, had no children or relatives in the state,” said Barham.

But the same woman, after an assessment performed by a nurse from an agency hired by the state, was deemed to not need help with activities of daily living such as bathing, eating and dressing.

Barham added that the woman’s dementia gets worse as the day progresses – a phenomenon called “sundowning” common to Alzheimer’s patients. But on the day of her assessment, the assessor came in the morning.

The assessor, Barham said, “got her on a good day, a good hour, so she could carry on a conversation; she could show her ability to walk.

So they kicked her out of the system, denied her everything, all services.”

Many denied, cut

The story Barham tells isn’t unique, according to Janet Schanzenbach, head of the N.C. Association, Long Term Care Facilities. Schanzenbach said she’s heard from a number of providers who’ve received letters denying services, or reducing them, for dozens, if not hundreds, of residents.

“The licensure requirements for special care units have not changed,” Schanzenbach said. She explained that staffing regulations require at least one staff member for every eight Alzheimer’s patients.


Until Jan. 1 of this year, special care unit operators got about $1,600 per month to cover the costs of caring for someone with Alzheimer’s. Program owners could bill for additional things the residents needed, like 51 cents per day to cover the cost of transportation to and from doctors’ visits.

These rates were amounts that Schanzenbach’s organization fought for in the General Assembly for years. A higher rate for residents with dementia was established only in 2005, and hadn’t changed since.

But as of the beginning of the year, that monthly rate was changed to an hourly rate, with an 80-hour-per-month limit, down from a 160-hour-per-month maximum under the old rules. That means that providers of care for Alzheimer’s patients could only receive a maximum of about $1,245 per month.

About 3,000 people around the state live in the special care units of adult care homes.

“In a special care unit, the care is heavier, people are incontinent and they’re more difficult to manage,” said Susan Simms, who operates a special care unit in Greenville.

Simms said much of the overhead is higher too.

“The liability is much higher. So when we do things like apply for insurance, workers comp, that’s always a big question: Do you take care of people with Alzheimer’s disease or dementia?” Simms said.

“The liability is higher and our rates are higher. It’s a riskier business to be in. And for us to have less reimbursement to accomplish that, it doesn’t make a whole lot of sense.”

Contested assessments

Starting last summer, the Department of Health and Human Services contracted with an independent agency, the Carolinas Center for Medical Excellence, to assess all of the state’s recipients of personal care services – close to 40,000 people, including thousands in special care units.

Barham complained that the assessments done on her residents were “drive by,” often lasting 15 minutes per patient.

“I have another 96-year-old lady whose services were reduced by the assessor,” Barham said. “This lady moans and groans in the bed because she’s in pain, but they reduced her number of hours based on the evaluation.

“I guess the assessor got her on a good day; but when you talk about someone in that age group, their status can change really quickly, before the assessor gets on the highway to go home,” Barham said.

Simms said two nurses did the assessments in her three facilities, with widely different results.

“We had people who were denied that had specialty medical apparatus, and it really surprised me that they denied all these people,” Simms said.

“But in the special care unit, they only denied two people. And in my heart of hearts, I believe that difference had to do with the people who did the assessments.”

Simms said she talked to the nurse who did the assessments in the building where a large number of her residents were approved.

“She was a little older and had worked in a variety of health-care environments,” Simms said. “She didn’t just take [the residents’] word for it. If she went into a resident’s room and what they told her wasn’t necessarily the case, she went out and checked their record.

I mean, many of those people are very proud, and they’re confused; they’ll say they can do something when they can’t. But if that’s where you stop with the assessment of the situation, that’s what you’ll get.”

In a written statement, CCME spokeswoman Melinda Postal said all their assessors are experienced registered nurses who use the same standards for assessment.

“Our nursing training emphasizes over and over the need to have the recipient demonstrate abilities, which we believe removes much of the potential subjectivity,” Postal wrote.

“In addition, we spend time in training teaching definitions and examples of assistance levels and do ‘mock’ assessments.

“Our payment is the same whether or not the beneficiary is approved for [personal care services]. There is no incentive for us to deny services.”

Department of Health and Human Services spokesman Brad Deen said DHHS has been satisfied with the work done by CCME.

“We meet with CCME weekly to resolve issues or complaints that come in,” Deen said. “In a handful of cases, when specific complaints have come in, CCME has actually gone out to re-assess people to make sure that everything was done the way it should be.

“We work very closely with them.”

Deen also said the department is encouraging adult care home operators to submit appeals if they think residents were unfairly cut or denied.

No quick fix

Legislators returning to Raleigh this week have said they’ll be addressing problems in reimbursement for personal care for residents of the state’s group homes for people with mental health disabilities.

But no quick fix is in sight for Alzheimer’s units.

According to Deen, when the state proposed exceptions to the state’s Medicaid plan – called a 1915i waiver – to the federal government this past fall, federal officials said no.

“We’re not being allowed to carve out a separate set of standards for this set of residents,” Deen said. He explained that would put North Carolina in violation of federal rules requiring that people be treated the same, whether they live in adult care homes or their own homes.

Creating separate standards for all patients with dementia would have to mean that people being cared for at home would be able to get Medicaid reimbursement for personal care.

Rep. Nelson Dollar (R-Cary), co-chair of the Joint Legislative Oversight Committee on Health and Human Services, said the state had resubmitted an application for a waiver, but a response to situations with special care units would take time.

“There’s work being done on that,” Dollar said. “But we don’t know about the timing.

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Rose Hoban is the founder and editor of NC Health News, as well as being the state government reporter. Hoban has been a registered nurse since 1992, but transitioned to journalism after earning degrees...

2 replies on “No Fix In Sight Yet for Alzheimer’s Special Care Units”

  1. I don’t care how much they have to tax us to pay for it… our society should not deny care to the elderly, especially those with Alzheimer’s.

  2. We just took my husbands grandmother to a doctors appointment. She has had Alzheimer’s for over 10 years. Both of her children have died. She is in an assisted living facility, and we were just told for her to stay there with these changes we will have to pay about $950 per month to make up the difference if things don’t change starting in June.

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