The facility is three floors of brick, ringed by pavement and playgrounds. It's blocky and utilitarian, with tall windows that peer out onto a Concord parking lot.
He doesn't want to die here.
James Clark is not a huge man. Average height. A little overweight. His graying hair is neat, although he sometimes admits he's overdue for a cut. He likes fast food and soda and cigarettes, even though he has a good idea they're bad for him. They aggravate his acid reflux and the COPD that turns his breathing into a rattled wheeze.
He remembers fishing and courses at a New York fashion institute and a marriage and a job.
But that was before a long, downward slide. It was before the death of his parents and a growing tendency to forget things. It was before an apartment fire and bouts in the hospital and that time he got lost across the street for a few hours. It was before the panic attacks and the general sense of overwhelming dread and the pain in his stomach that would – eventually – leave him vomiting in a bathroom.
It was before the assisted living facility he is now so anxious to leave.
• • •
North Carolina has a mental health problem.
For more than a decade, people with severe mental illness followed a predictable pattern of crisis and hospitalization and, eventually, ended up in facilities like adult care homes. And there they stayed.
But federal officials intervened, accusing the state of civil rights violations and demanding a fix. They reached a settlement with the state in 2012.
One part of the agreement was precise: In eight years, 3,000 people should be in their own homes – out in the community – instead of adult care facilities.
As of July 1, the state should have been halfway there, but it fell short of the mark by nearly a third.
State data show that meeting the target will be a tall order. It will mean moving more people with mental illness out of adult care homes at a much faster pace.
And without the proper supports in place, that can be dangerous for those used to life inside an adult home, where meals, medication and other daily routines aren't designed to boost independence.
For those who work in mental health, the core tenant of the settlement acknowledges a decades-old concept: that just like everyone else, people diagnosed with severe mental illness have the right to choose where to work, play and live.
It's a choice that, for many, has never really existed. And although there are dangers, it has the potential to change lives.
They call it the dignity of risk.
It was a fire that forced James Clark out of his home in Cabarrus County and into First Assembly Living Center. His sister thought that was best, given his history of depression and anxiety. The panic would prompt him to swallow air, make him nauseous and trigger his gag reflex.
Dignity of risk
Halfway through effort to reform mental health treatment for those stuck in adult care homes, NC is falling behind
Aug. 3, 2016
Story by Tyler Dukes
It wasn't really her decision. James was his own guardian, meaning he was legally capable of making his own choices. But on the move, James agreed with his sister Terri.
"He realized he needed to," Terri Clark, said. "He didn't rebel or anything."
James' room at First Assembly had its own bathroom, its own TV. It was designed for two people, although he sometimes had it all to himself.
At 180 beds, the facility was one of the state's larger adult care homes when James Clark began his stay around the winter of 2010 and 2011.
He spoke with and visited Terri often. He told her about visits to Golden Corral, a Chinese restaurant and other group activities like fishing.
"He enjoyed doing stuff like that," Terri said. "When he went on these trips, it was with assistance."
He often complained there were too many people in wheelchairs, telling Terri it was like a "roller derby."
But to Terri, these other residents were part of a community that lifted him out of the dark place he inhabited before he arrived.
So she was surprised – and resistant – when he started talking about getting his own place in August 2014. Before he moved to the facility, she tried to set him up on his own three times before, always unsuccessfully.
But the team run by Cardinal Innovations, the managed care organization charged with transitioning people out of adult care homes in the Charlotte area, said James would have a suite of services behind him to help him succeed.
"Once they kept on giving these reassurances that peer support and all these things were going to be there, that sounded good to him," Terri said.
Treatment notes her brother's support team provided to Terri show Cardinal’s team first reached out to him in late March 2014, discussing housing options and coping skills to soothe his bouts of panic.
By April, when he was accepted for the Transition to Community Living Initiative, or TCLI, program he was so excited about the possibility of leaving the adult care home that members of the team needed to caution him against moving too fast because "this usually causes difficulties in the transition process."
"I was fine staying here to get better," he told the treatment team, according to their interview notes. "I just never thought I would be here forever."
Quintin Kettere's CD collection is an assortment of classics.
As he thumbs through the stack on a hot July afternoon, he pauses a beat on his favorites. Janet Jackson. George Michael. Lionel Richie.
"Of course Phil Collins," he says. "You can’t do drums without Phil Collins."
They're donations, mostly from his transition team managed by Alliance Behavioral Healthcare, the managed care organization for the Raleigh area.
"I hope to do some work with these people someday," Kettere, 49, says as he finishes the stack.
In his early 20s, he was an audio engineer who worked with The Cosby Show and a New York recording studio that produced a few tracks on the self-titled solo album of June Pointer, of The Pointer Sisters.
He had been managing the symptoms of a childhood diagnosis of schizophrenia just fine. But in 2011, years after he and his family moved to North Carolina, a downturn took him from his own home to a private psychiatric facility, then the state-owned Central Regional Hospital in Butner.
"It seemed like everybody was leaving but me. So instead of just sinking down in the chair, I got up and helped what I could.''
Quintin Kettere, 49
He can recall the things he liked about the place. The staff. Movies on Fridays. The band – "Hear for a Reason" – he and a few other residents started that played 80s covers. He learned to advocate for himself, and respected the way the staff handled tough situations.
"When I was in the hospital, you could hear people who had bad days up and down the hall," Kettere said. "And they let you know they were having a bad day."
But he said it wasn't clear he had any other place to go.
"It seemed like everybody was leaving but me," Kettere said. "So instead of just sinking down in the chair, I got up and helped what I could."
After working with an Alliance support team, he ended his four-year stay at Central Regional and moved into a second-floor apartment north of Raleigh. In July, he celebrated his one-year anniversary here.
"Everything just fell in line," Kettere says. "This thing works."
The independence has been good for him. And he can catalogue the ways he compares where he is now to where he was just last summer: support, relationships, his everyday needs – all better.
But his favorite part about this place is the room down the hall, a second bedroom devoted completely to his Casio CTK-6000 keyboard. It was a staple in his hospital room, but he had to fit playing time in between the highly choreographed daily schedule for residents.
A part of him misses the place, "but that's human," he says. It just wasn't where he wanted to be.
"Nothing against anybody, but I wanted to go back to my own life," Kettere said. "I know with what I had in my life, I can help some people."
North Carolina is by no means alone when it comes to mandates to overhaul its system of mental health care.
Since 1999, when the U.S. Supreme Court ruled in Olmstead v. L.C. that people with disabilities must receive services in "the most integrated setting appropriate to their needs," the DOJ has cracked down on violations of the Americans with Disabilities Act.
As of 2016, about half the states in the country have pending or court-approved settlements that require the expansion of treatment options available to people with severe mental illness and prevent their segregation in facilities like nursing and adult homes.
In North Carolina's case, the settlement included benchmarks that outline the progress the state should be making toward moving people into more independent living. But the state has missed those goals so consistently that in 2015, the DOJ accused state officials of violating the settlement.
Now at the halfway mark, North Carolina as of July 1 should have had 1,166 people occupying housing slots through the Transition to Community Living Initiative. Totals through the end of June show only 853 have made the transition, a 27 percent shortfall.
If the state continues at this rate through 2020, they’ll miss their 3,000-person target by more than 1,000 people.
"We probably look into the same crystal ball as everyone else. It will be an uphill challenge to meet those numbers.''
Ann Oshel, Alliance Behavioral Healthcare
"There's an opportunity for the state to meet the benchmarks, but they will have to really push, really work hard, and they will have to change at a pace much faster than they've been willing to change in the first few years of the settlement," said Corye Dunn, director of public policy for Disability Rights North Carolina.
Part of the problem is just finding a place to put people. Rural areas may have shortfalls in housing altogether, and, in counties like Wake where housing is more plentiful, it's too expensive. Manipulating that housing stock is largely outside the control of MCOs, but is still critical to getting people out of adult care facilities.
MCOs like Alliance do work closely with landlords, and there are government incentives for those who set aside portions of their apartment complexes and housing rentals for vulnerable populations. But those populations can include senior citizens and veterans, who also struggle in some areas to find affordable housing.
"I think the MCOs as a whole are doing the best they can, given the stock that they have," Jack Register, executive director of the National Alliance on Mental Illness North Carolina, said.
As a member of the Governor's Task Force on Mental Health and Substance Abuse, Register and his colleagues in May completed a list of recommendations to Gov. Pat McCrory that include an expansion of supportive housing, funding for emergency housing and more regional planning from MCOs.
Even with those measures, Ann Oshel, a spokesperson with Alliance, expects that meeting the mandate won't be easy.
"We probably look into the same crystal ball as everyone else," she said. "It will be an uphill challenge to meet those numbers."
"The numbers are important to us. But what's more important is that person's quality of life.''
Tinya Ramirez, Alliance Behavioral Healthcare
Advocates and MCOs both say they're after more than just meeting benchmarks. Every treatment team that works with a person in the TCLI program must develop a "person-centered plan" that targets the individual's specific issues. That might include rehabilitative services like therapy or supports like instruction on how to cook meals and manage money.
"While we would love to move 15 to 20 individuals a month, we have to make sure they have everything they need," Tinya Ramirez, a TCLI supervisor at Alliance, said. "The numbers are important to us. But what's more important is that person's quality of life."
But in this area, advocates like Disability Rights NC Executive Director Vicki Smith often see MCOs and their transition teams fall short. And as prescriptive as it is, she said the agreement the state has with the DOJ contains only building blocks.
"What isn't there, and what you can't put in the settlement, is kind of the mortar that holds those bricks together and makes it a stronger placement," Vicki Smith said. "That's the part about when people are so busy checking boxes, they're not putting a plan together."
And when the treatment teams make promises to adult home residents who choose to leave, Register said, it's crucial that those teams deliver.
"That's the key issue: We must make sure the community supports are there so we're not throwing folks out into the community expecting them to manage something they can't, or expecting family members to pick up professional roles that are not their obligation to pick up," Register said.
Terri Clark's list of complaints was a long one.
She was opposed to her brother's move from the start, and told the treatment team as much. Weeks after James Clark's transition from the adult care home on Oct. 1, 2014, she wanted to know why the treatment team wasn't keeping its promises.
The service to help pay his monthly bills wasn't set up yet, and his Social Security check was lost for days. She was concerned about how often James was on his own, despite a member of the treatment team advocating for 24-hour personal care several days a week.
And she was worried about why her brother was eating TV dinners instead of learning cooking skills from members of the team who weren’t visiting like they were supposed to.
She raised these concerns at a meeting with the team she recorded on Oct. 24, 2014.
"These are things that were said, before my brother moved out, that were going to be in place," she said. "Was it in place?"
"It was not," Chad Allen, the TCL supervisor at Cardinal Innovations, said.
Terri was also worried the Cardinal team hadn't spent enough time considering the problems with her brother's physical health, like his diet and his breathing, which grew more labored as the conversation continued.
Family members pointed to a psychological assessment that concluded James "will likely experience considerable difficulty with independent living" and would need assistance. The report said setting up a guardian "may have to be considered in order to help him," although James disagreed.
"The one thing we have to bear in mind at this particular point is that James remains his own guardian," said Millie Simms, the director of operations for RHA Health Services, which coordinated James' behavioral health treatment. "Part of this is that he has a willingness. He can choose to do something or choose not to do something."
Guardianship, which would have stripped James of his ability to make treatment decisions, was a step the family had been hesitant to take when he was in the adult care home.
Without guardianship, members of the treatment team said, the choice was up to James.
"We've got to give him a chance. We have to surround him and blanket him with supports," Simms said. "Then if it doesn't work, then we can sleep at night and say we gave him a shot. He deserves that."
Adult care homes aren’t ideal settings for the mentally ill.
But moving out can be intimidating – only 20 to 30 percent of the people MCOs approach agree to leave, according to Martha Knisley, the independent reviewer appointed by the court to oversee progress with the settlement.
Families, too, can be wary about their loved ones leaving a more supervised environment where one or more nurses are at least on-site around the clock.
"There's a basic assumption that people are safe in institutions, and they're not. They're just not." Vicki Smith, with Disability Rights NC, said.
It's true that death happens with some regularity when people move out of adult care homes. The state's latest data show 42 people in the program have died since it began – that's about 1 out of every 20 people who made the transition.
But advocates note death is just as prevalent in adult care homes, a fact that has more to do with the population of people with severe mental illness itself. It's an older demographic that often suffers from other complicating chronic health issues.
"There are a lot of examples of the perfect storm, where someone leaves an adult care home setting and they go back into the community and things fall apart and the next thing we know, we lose them," Register said. "The question becomes, in hindsight when we do the postmortem, could we have done something different in the adult care home, would they have survived longer?"
The thought of moving made James Clark anxious. But he wanted to try.
"James reported some uncertainty with moving into a new apartment, but felt he would be able to maintain housing with support in place," wrote Nicole Sherrill-Corry, a member of James' community support team in treatment notes dated June 2014.
He told team members several times about his fear of dying in the adult care home and that he didn't feel he was getting appropriate treatment for his mental health symptoms on the inside.
But members of the team had concerns about any possible transition to independent living, chief among them dementia. An evaluation with a psychologist reinforced that concern.
"Discussed the psychological report and the rather negative findings that suggest independent living may not be a reasonable outcome. Presence of dementia is likely too strong and he will need assistance," wrote Walter Knox, a clinical social worker on the support team, on Aug. 17. "Discussed the option of providing this kind of assistance, noting that he will only be able to stay in an independent setting for an unknown number of years."
"The guidelines from the state compel placement efforts.''
Walter Knox, writing in treatment notes
But dementia is a medical diagnosis. And even though it’s one of the few factors that would prompt the state to disqualify someone from the TCLI program, a psychologist's assessment isn't enough. Cardinal's TCLI program supervisor, Chad Allen, made this clear to the team.
"He indicates that there are no medical reports that diagnosed James with dementia, only the evaluation from Dr. Popper that suggests a rule out," Walter Knox, the social worker with RHA, wrote in a treatment note on Aug. 20, 2014. "The guidelines from the state compel placement efforts."
James Clark made it clear he wanted this. Despite his occasional reservations. Despite his panic attacks.
And in his own home – a ground floor apartment less than a mile from downtown Concord – there were high notes. There were days when team members noted that James appeared happy, that he enjoyed being at home. He learned how to season and bake turkey wings. He often reported taking all his medication.
RHA social worker Laquana Richmond wrote on Nov. 21, 2014, that James had made progress on maintaining his apartment, paying his bills and managing his meds. And she said in an interview last week that rehabilitative treatment from the behavioral health team was working.
The team, she said, "went above and beyond for this individual."
"I let them know: I am doing your job. I'm not getting paid to do your job.''
Other team members, however, noted repeated problems in their notes. His apartment was often unkempt, he missed doctor's appointments because of his inability to manage public transportation and he didn't seem to retain the cooking skills team members taught him – at least in the cases where that service showed up at all. He misplaced things, and continued to have bad anxiety attacks.
And he was often lonely, but was resistant to options like joining a local senior center that felt too much like a nursing home.
"When you moved him out, now he's looking at four walls, nobody to talk to, nothing," Terri Clark, James' sister, said. "No outside communication. He didn't have nothing. That sent him into more of a depression."
She visited her brother regularly. He spent holidays with her. But she continued to have concerns that Cardinal and the rest of the treatment team weren't providing the support they promised before James left the adult care home – or additional support like 24-hour personal care service that she paid for herself.
"I let them know: I am doing your job," Clark said. "I'm not getting paid to do your job."
In March 2015, his medical problems began to mount. His symptoms landed him in and out of the hospital, where he missed an appointment with a neurologist meant to assess him – formally – for dementia.
Such a diagnosis could have meant the end of independent living.
Five months later, James' independence ended anyway. After another hospitalization, he was transferred to a Concord nursing facility a 10-minute drive away from his now empty apartment. He died Sept. 4, 2015, almost a year after he moved out of the facility where he feared he'd spend the rest of his life.
"If a person didn't want to die in a nursing home, why did he die in a nursing home?" Terri Clark said.
"I got him in a safe haven, they took him out of the safe haven – for the fish to be out of the water – and now he's dead.''
To his sister, James' death due to COPD marked the end of a long decline – a "downhill snowball," she says – that began the day he left First Assembly.
"I dealt with my brother for 20-odd years. I could not do it any more because I had family of my own, a business to run of my own," Clark said. "I got him in a safe haven, they took him out of the safe haven – for the fish to be out of the water – and now he's dead."
In the state's TCLI report for that month, a section on adverse incidents lists the cause of his death as "unknown." A footnote explains that the "client had terminal illness."
"Thank God I was there for my brother. The next person may have nobody," Clark said. "They'll just be a dead statistic without nobody knowing."
Terri says she doesn't know for sure whether her brother would still be alive if he hadn't tried to live on his own. And she doesn't blame Cardinal for his death.
But she is angry about what she sees as a case of neglect, a case where she says the treatment team didn't step in when things got worse.
"I feel my brother was led to believe that he would have the services he needed to be put in place for him to be on his own," Clark said. "He believed the services they said they were going to provide would be there, but they weren't."
After more than a month of repeated requests, the DHHS Office of Communications refused to make anyone at the agency available for an interview for this story.
Jason Vogler, interim senior director at the Division of Mental Health, Developmental Disabilities and Substance Abuse Services, referred requests for an interview to the communications staff. Jessica Keith, special adviser to the head of DHHS on the ADA, did not return several phone calls seeking comment.
In lieu of an interview, DHHS Senior Manager of Media Relations Kate Murphy released a statement noting that more than 850 people have moved into the community through the program.
“The Department of Health and Human Services is committed to meeting the goals of the settlement in collaboration with the LME-MCOs, providers and other stakeholders,” Murphy wrote.
Cardinal Innovations refused to make anyone available for an interview about its program. Citing privacy restrictions, company spokesperson Allison Stewart said company officials were prohibited from answering questions about Clark's case.
"People aren't that simple. Our clients have more than one thing going on.''
Corye Dunn, Disability Rights NC
In an emailed statement, she said the company has worked to comply with the settlement by reaching out to 1,000 people in hospitals and adult care homes since the process began. As of July 1, she said 166 people have made the transition into their own homes with the help of Cardinal's teams.
"While the settlement requires Cardinal Innovations to provide in-reach to eligible individuals, ultimately, it is each individual’s choice as to whether or not he or she wishes to move forward with participation in the TCL program," Stewart wrote.
The system isn't perfect. On that, everyone seems to agree.
Advocates like those at NAMI NC and Disability Rights say they want to see far more coordination between physical and mental health, two areas that are often siloed by the different ways they're funded.
"People aren't that simple. Our clients have more than one thing going on," Corye Dunn, with Disability Rights, said. "Mr. Clark had mental health needs, but he also had significant physical health needs, and our system, I would argue, whether you're in an institutional setting or not, does a poor job of integrating those needs."
As the 2020 deadline looms, MCOs warn that it may take longer to essentially build from scratch a mental health care system that complies fully with federal requirements. But the alternative, Alliance's Ann Oshel said, "cannot be a system that imposes judgment on whether or not we think somebody could have a different life than the one they have."
NAMI's Jack Register said those choices can mean tough conversations for advocates and family members alike, who must consider what success means not to them, but to a person with mental illness.
"As long as we're not talking about someone harming others or harming themselves, it's kind of OK if their life may not look the way I want it to, but it looks the way they want it to," Register said. "That kind of goes to the core of what North Carolina is: Let folks be as they are, let them do the best they can with what they have, give them what they need and then get out of the way."
Quintin Kettere no longer hears people having bad days.
Instead, it's neighbors coming and going. Or the kids at the playground around the corner.
He wakes up on his own schedule to "see his people" – televangelists like Arnold Murray from Shepherd's Chapel, Creflo Dollar, Joyce Meyer and Joel Osteen.
He can play his keyboard whenever he wants.
The support team comes by a few days a week to check on him, and they call every day to make sure he's taking his medication (he is). He talks trash about sports with his neighbor and goes to the Wal-Mart up the street to hunt for new music. He likes cooking cheddar cheese burgers and Polish kielbasa.
He feels good. Like he matters. Like he belongs.
"It's a life, you know?"