Stanley Cotton (R) jokes around with Jemel TKTK who worked at the Homestead Rd group home while Cotton lived there.
Stanley Cotton (R) jokes around with Jemel TKTK who worked at the Homestead Rd group home while Cotton lived there. Photo credit: Rose Hoban

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Group home providers are being told there’s money to support their residents with mental health disabilities, but the fix hasn’t been spelled out.

By Rose Hoban

Stanley Cotton has been coping – for better or worse – with schizophrenia since he was 17 or 18 years old.

There were the years when he was admitted to the hospital, 36 of them over 15 years. There were the times when doctors started him on powerful psychiatric drugs, but either bad side effects or ineffective medications landed him back in the hospital.

Stanley Cotton, right, jokes around with Jemel Sutton, who worked at the Homestead Road group home while Cotton lived there. Photo credit: Rose Hoban

There were the times he was discharged into homeless shelters, or onto the street.

Finally, there was the time, in 2006, when he was admitted to the old John Umstead Hospital for 109 days, at a cost of almost $79,000 to North Carolina. He was discharged to the Homestead Road group home in Chapel Hill.

He hasn’t been hospitalized in the eight years since.

“At the time, it was the only choice they gave me, but it was a good one,” Cotton said.

Cotton stayed at the Homestead house for six years, building ties to the community, getting stabilized on his new medications, learning skills to be independent. In 2012, he moved into his own place. He was 48.

“The group home worked for me,” Cotton said last week when he visited the General Assembly to talk to legislators about continuing group home funding.

But since changes driven by a 2012 settlement North Carolina made with the U.S. Department of Justice over mental health funding, getting the money needed by group homes has been a challenge.

And money set aside in the 2013 budget to bridge the gap until a longer-term solution for funding the homes is found has run out.

The leadership at the Department of Health and Human Services has said the new House budget passed last week gives them the ability to correct the situation.

But that’s not written down anywhere.

And that has some people nervous, and others, including lawmakers, frustrated.

Bridge too short

People with mental health disabilities who live in small – six-person or fewer – group homes have been in legal limbo for years since the state signed the settlement with the DOJ. The problem was that reimbursements for people housed in institutions were greater than reimbursements for people housed in their own homes and communities, something that’s illegal under the American’s with Disabilities Act (see box).

Jackie Shelton Green and Wadleigh Harrison have sons at the same group home. They came to the N.C. General Assembly to talk to lawmakers about allowing their sons to stay at home, where they say they want to be. Photo credit: Rose Hoban

That money allocated in 2013 to tide the group homes over started running out in February, leaving some operators in the lurch, like Tonia Donnell.

Donnell’s been absorbing the costs for several of her residents for four months now, to the tune of about $9,500.

“That’s a whole lot of money,” she said last week.

“I would say that, percentage-wise, it’s about 20 percent of my income for one home,” she said.

Donnell isn’t alone, according to Jenny Gadd, who’s become one of the loudest advocates for group homes. Gadd works for Alberta Children’s Services, which runs the Homestead house, where Cotton lived.

“We’ve been out of money since Jan. 1, but because we’re a bigger company we can hang on,” she said.

“If there’s no plan, that brings up a whole other thing,” Gadd said. “We’re being told there’s a plan, but we haven’t seen anything. And people are being a little more paranoid.”

Where’s the plan?

Dave Richard from DHHS says there is a plan.

“None of us … wants to see anyone lose their homes,” said Richard, who has served as deputy secretary of behavioral health and developmental disabilities services. Last week, he was named the new Medicaid chief, a post he’ll take up in June.

But between now and the beginning of the new fiscal year in July, there’s little DHHS can do. The bill written in 2013 forbids anything more than the $4 million allocated as bridge funding to be spent on tiding group homes over, and that money is exhausted.

So Richard is focusing on the future and saying that once the budget is passed the department can make things whole.

“Once the old budget bill is no longer in effect, that provision goes away,” he said.

What will take the old provision’s place is a special provision written into the House budget that makes DHHS “fully authorized to make any changes or take any actions necessary to administer and operate” the Medicaid budget.

[box style=”2″]
For years, in order to receive Medicaid “personal care services” and remain in their own homes, people with mental health disabilities were required to need assistance with two or more so-called activities of daily living – such as bathing, dressing, toileting or eating. But if that same person lived in an institution, like a group home, they were only required to need assistance with one activity in order for Medicaid to pay for the help. For many living in group homes, that essential activity was help managing their many medications.
The federal Centers for Medicare and Medicaid Services warned North Carolina repeatedly that this “institutional bias” was illegal under the 1992 Americans with Disabilities Act. CMS pressed the state to resolve the problem, but meanwhile kept paying the bills.
But in 2011, CMS finally ran out of patience. The agency told North Carolina to resolve the problem.
When the legislature worked on this in 2012, the discussion centered around a possible “woodwork effect”: state officials estimated thousands living in their own homes could become eligible at the lower level of assistance. That could have cost the state tens of millions annually.
In order to discourage a flood of new recipients and save state dollars, lawmakers fixed the issue by requiring everyone, no matter where they lived, to have greater needs in order to get reimbursed for the help. The legislature also disqualified payment for medication management. That meant many group home residents – even those with complicated medication regimens – were disqualified from receiving personal care services.

Since 2013, group home residents, operators and their advocates have been waiting for a long-term funding solution from the General Assembly.

According to Richard, that would give DHHS flexibility to address the group home issue.

But vagueness in the wording makes many people nervous. They’d like to see a solution in black and white.

“I’ll be honest with you, I can’t get a clear answer,” said Rep. Marilyn Avila (R-Raleigh), who co-chairs the House Health Committee and has been involved in group home issues for years.

“The direction I got was don’t worry about it, [DHHS] got the flexibility they need to take care of that problem,” she said. “But what, who, how – I don’t know.”

Keeping watch

“I understand that people are frustrated,” Richard said. “I won’t sit here and say ‘trust us’ if it weren’t true.”

But he said that once the new fiscal year begins, “We’ll have a much more aggressive way of supporting these needs.”

Dave Richard, director of the Division of Mental Health, Developmental Disabilities and Substance Abuse Services, was named the new Medicaid head last week.

He also said the system, as it is now, needs to change.

“We have a system that grew up over a long period of time, with multiple funding streams,” he said. “In a perfect world, we have one rate that would cover the budget for a home.”

Richard would like to have a review of what homes are needed, what homes are better quality and which give residents choice in where they live. He said oversight  and coordination of group homes by the mental health managed care organizations in the state needs to improve.

“We want to evaluate what those changes look like. And as Medicaid reform goes forward and we become more knowledgeable about what’s happening at the group homes, then we can make the best recommendations.”

Avila said she’s willing to give the department the benefit of the doubt on solving the group home problem, but that she’s watching.

“I figure they are much closer to it than I am, and if they don’t solve it I will hear the screaming,” she said. “So it’s in their interest that I don’t hear screaming.”

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