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People with mental illness who live in group homes are anxiously waiting on lawmakers to decide about funding for their facilities for the coming year. Advocates plan to rally Tuesday in front of the General Assembly to make sure their needs are addressed in the state budget.
By Rose Hoban
In the years after Alex Harrison was diagnosed with schizoaffective disorder at 23, he suffered from paranoia and delusions and sometimes ended up hospitalized multiple times a year in state psychiatric hospitals. He often also used alcohol to quell his psychosis and frequently skipped his medications.
“That has happened in the past when I was living independently,” Harrison said. “I stopped taking my mood stabilizer because it was costing me about $250 a month and I was just painting houses for minimum wage.
“That ended up being a hospitalization, my not taking it.”
But since February 2012, Harrison’s stayed out of the hospital and has been taking his medications regularly; that was when he got a place in an intensive group home in Chapel Hill, living with three other people.
“The low level of stress here has really contributed to me succeeding,” Harrison said. The time in the group home has been “the longest time I’ve ever been outside an inpatient setting since I’ve been diagnosed.”
Harrison’s group home is one of the hundreds of facilities that house six people or fewer facing significant cuts to funding in the form of tightened restrictions on who can receive Medicaid personal care services.
The budget from the state House of Representatives allocates $8 million in personal care services funding for the mental health group homes, a cut from last year’s rate, but enough to keep them from closing. However, the Senate budget only mentions a pilot program to change group homes funding. Omission of upcoming funding effectively eliminates personal care for most of the mental health homes in the state.
Now House and Senate budget writers are negotiating the consensus budget behind closed doors, and advocates are waiting nervously.
Without the personal care services, they say, many of the group homes will close.
Last year, members of the General Assembly, in an effort to save the state money, limited Medicaid personal care only to those who need “hands-on” help with activities of daily living such as feeding, bathing, dressing, toileting and getting around [see box].
One of the activities lawmakers cut out of the personal care service definition was helping residents manage their medications – but that’s the most important thing for Alex Harrison.
“I take a lot of meds,” he said.
Harrison’s not kidding. He’s prescribed about 20 different medications, some of which he takes as needed when he has symptoms of psychosis or has severe mood swings. Recently, he’s started exercising and has changed his diet. He’s lost weight and has been able to wean himself off of diabetes and cholesterol medications.
Jenny Gadd, a manager with the organization that runs the home, Alberta Professional Services, said on occasion Harrison needs a reminder to shower, but his issue is really the medications.
“It’s the medications and the complexity … and the lethality in terms of suicide risk,” said Gadd, who until recently worked in Harrison’s group home and knows him well.
Harrison admits to about a half-dozen suicide attempts. “That’s something that is monitored constantly,” Gadd said.
The House budget has a slightly tweaked version of the personal care rules that would allow for people who primarily need medication management, like Harrison, to continue receiving personal care services. But the payment rate will be reduced to about $15.20 per person per day, slightly lower than last year’s rate of $16.14 per day.
The rest of the money to pay for residents’ care comes from their own monthly Social Security disability payments, plus some from combined state and county special assistance dollars totaling about $1,238 per resident per month.
“The state has been using Medicaid personal care service funds rather than state funds to keep group homes open. Rather than looking at personal care as a service for people with mental illness, it’s really supplemental funds to keep things going,” said Ann Akland, head of the Wake County chapter of the National Alliance for Mental Illness.
“The group homes need a certain amount of money to keep the doors open and that’s how they were using that daily rate of personal care,” Akland said. “With that gone, there’s not enough money to pay the rent, keep the lights on, pay for food and 24-hour staffing, which is required.”
Gadd said the cost to run a 6-person group home is at least $80,000 per year, in part because of the requirement for round-the-clock staffing.
“If you do the simple math and look at group homes that are following the rules, you can see that if they’re providing the essentials that people need, it’s going to cost a lot more than they will have just with special assistance and their Social Security disability money,” Akland said.
The Alberta group home opened in 2006, and since it’s start the population has been quite stable.
“We’ve had only five residents since then,” said manager Jemel Sutton.
The first resident to move out did so last year; Harrison took his place. Another resident just moved out this spring, and the staff expects to fill that bed sometime in July.
A lot of staff are original too, like Sutton, who said he didn’t know what to expect when he started.
“When I first came, my perception of mentally ill people was that I needed to turn around and watch my back every two seconds, because someone is going to stab me or do something,” he said. “I was always paying attention because I thought some crazy stuff was going to go on.”
But nothing happened, except that Sutton built strong, therapeutic relationships with the residents there.
“It’s so gratifying. You get someone and read the history, and it was, like, they were in the hospital six times in the prior year,” he said. “And then watching them progress not only with their mental illness, but also with the physical thing.
“Like with Alex, he’s off diabetes medication. He’s walking every day, smiling every day, laughing and joking all the time,” Sutton said. “Just seeing that is gratifying, and that’s what keeps me here.”
The residents, who all have histories of substance abuse, said they felt uncomfortable going to big Alcoholics Anonymous and Narcotics Anonymous meetings. Harrison had a small relapse in February, when he drank two beers. So the men asked Sutton to help them start a group.
“They were able to give me information about when I can look at them and know something’s going on, so I know what to do,” Sutton said. “We actually talk about it.”
When asked if the success of this group home is due to luck, Gadd laughs.
“We’ve been doing it so long, it can’t be luck at this point,” she said. “We’ve been tested and tested and stayed solid.”
She recounted how one resident’s mother died, and everyone expected the resident to fall apart, but he didn’t.
Then a much-loved staff member was killed in a car accident, and everyone held it together.
Then a resident moved out last year and was living independently when his mother died, and he held it together too. Gadd said making it through trials like these gives residents the confidence to succeed.
“So that the next time it comes up, you can say, ‘I’ve been here; it’s really upsetting, but I can make it,’” she said.
‘Constant chipping away’
Using personal care services to help pay for mental health group homes dates back to the mid-1990s, when state officials realized they could pull in federal dollars to help pay for some mental health services by giving people a Medicaid service.
Then when state officials made plans to close psychiatric hospitals in the early 2000s, as they reformed the mental health system, group homes such as the Alberta facility in Chapel Hill were supposed to take up the slack.
“It was an experiment,” Gadd said. “There was hospital-downsizing money and the difference was that we were supposed to be here instead of in the hospital.”
“It saves the government thousands of dollars for me to live here,” Harrison said. “If I lived alone, I’d end up costing the state more money through hospitalizations, so this is the economical approach to mental health care. I think there should be more group homes.”
But largely because of the uncertain funding, Gadd said there’s a profound shortage of group home beds. Wake County has dozens of mental health group homes, as do Alamance and Mecklenburg. But in Orange, Person and Chatham counties, there are only 32 beds for the three counties.
In all, the state has about 1,480 group home beds for people with mental health disabilities.
Gadd’s organization, Alberta Professional Services, primarily works with people with intellectual and developmental disabilities, because, as she said, “That’s where there’s revenue right now.”
“You can’t hardly sustain yourself doing only mental health services,” Gadd said.
She explained that Alberta uses the same administrative staff to run mental health homes and homes for people with intellectual disabilities. That sharing of staff helps to support the mental health work, which is complicated by the state’s use of managed care organizations to run mental health services.
“You need someone to keep up with all the different contracts we have with [mental health] managed care organizations around the state. We have contracts with all 11 of them,” Gadd said.
Recently, Gadd moved to managing those contracts and supervising Alberta’s other group home in the area. She also does trainings for group home workers around the state. But a recent training in April had to be cancelled.
“No one wanted to train someone they might have to layoff in a month,” she said.
Sutton and Gadd said knowing they’re doing such good work, it’s disheartening to watch the state chip away at funding and support for facilities such as this one.
Gadd said most group homes will experience about a $5,000 annual cut from the best-case budget scenario currently proposed in Raleigh.
“But if it’s like more a $10,000 cut, that would not be sustainable for many of [the group homes],” she said.
“No one seems to know the answer,” Gadd said.