With the implementation of a new housing program for people with mental health problems, advocates hope to change the dialogue around the long-term outcomes for people with mental health disabilities.
By Rose Hoban
North Carolina’s mental health system is undergoing a small, subtle paradigm shift.
More than a year after North Carolina signed an agreement with the U.S. Department of Justice to settle allegations the state failed to provide appropriate housing for people with mental health disabilities, more than a hundred people have moved out of adult care homes and into their own homes.
According to advocates, part of what the DOJ agreement does is force the state into finally creating community-based resources for many people who have spent years in and out of institutions.
But more important, say advocates, is the fine print in the agreement in which North Carolina agrees to focus more on people with mental health disorders achieving recovery and less on just keeping people stable enough to stay out of state psychiatric facilities.
That’s the focus of a conference taking place this week at the Radisson Hotel Research Triangle Park in Durham.
“We have a system that is designed around illness and stabilization and maintenance, but not one designed around recovery,” said Cherene Allen-Caraco, who runs the PROMISE Recovery Education and Peer Support Program in Mecklenburg County.
Allen-Caraco’s organization has been hired by the state to help train mental health providers in how to work peer support into mental health programs and to get people thinking about recovery.
“Recovery is not the absence of symptoms; it’s that you can still have a great life despite those other things,” she told the people at a Wednesday afternoon conference focused on the progress of the DOJ settlement. “Recovery is about having a vision for your life again.”
And central to that vision, she said, is helping people fit into the communities where they live, with housing and jobs.
The terms of the DOJ settlement stipulate that the state provide community-based living over an eight-year period for 3,000 people who otherwise would land in institutional settings.
See the DOJ agreement at page bottom
The first full year of the settlement ended in July, and North Carolina met the goal of getting 100 people out of places such as adult care homes and into independent living situations.
So far, 146 people have moved into their own housing.
Two-thirds of the people moving into housing need to be moved out of adult care homes; the other third are to be offered placement straight from state psychiatric hospitals.
“This is the year to go back and talk to everyone and see what worked and what didn’t work,” said Ken Edminster, who is the housing administrator for the Division of Mental Health, Developmental Disabilities and Substance Abuse Services.
This year, the state needs to get 150 people into housing; but starting in July, the annual requirement jumps to more than 450 housing slots and stays at or above that level through 2020.
“We have to make sure we’re hitting on all cylinders by year three, because the number jumps up and it remains up through the remaining years of the settlement,” Edminster said.
“We are still finding our footing,” Edminster said.
After the state signed the DOJ agreement in August 2012, DHHS formed working groups to get organized and had to train employees from the state’s mental health managed care organizations, which happened in January, and start the transition process by February.
“Not a lot of time to create a functional operation,” Edminster said. “We got it going, and we got people moving; but it wasn’t everything it needed to be.”
The program is based on what’s been done in other states that emphasizes getting people with mental health problems into housing – and employment – first, before all of their other issues are “solved.”
Edminster said that in the past, people who were moved into the community had to abide by stringent rules or face losing their housing. And that caused people to fail.
Substance abuse doesn’t necessarily mean someone loses their housing. Instead, people are supported to get to the point where they can live in the community successfully.
“It’s permanent; nobody can take it away. The only way they can lose it is by being a bad tenant,” Edminster said.
He said that studies have shown that when people get into a community to live, they tend to stay for a long time, so long as they have the support. And a person moving out of an adult care home may need more intensive services up front as they get settled into their new living situation; but over time, the needs decrease.
The needs will never go away completely, Edminster said. But he noted that one of the goals of the program is to create an infrastructure of community support services for the long term.
“We don’t want to just do this for eight years; we have an opportunity to fix the system,” Edminster said, quoting Division of Mental Health Director Dave Richard. “Let’s fix the system, so that we have something in place to respond to the needs of the citizens.”
Get a job
Another aspect of helping people with mental health problems succeed in housing is helping them find jobs.
“Jobs promote valued roles in the community,” said Pat Keul, who works with Allen-Caraco. “We’re talking about real jobs, real competitive-paying jobs, not work in workshops or putting widgets together.”
Keul said she’s spent years helping people get into supported employment, a concept that’s different from so-called sheltered workshops or the make-work jobs that people with disabilities have often been shunted into in the past.
She described a model in which people get counseling to find jobs that fit their interests and abilities. Sometimes the person will need an employment support coach to get established in their jobs, but many won’t need that coaching.
Sometimes one of the most important thing for people with mental health issues is to find the right accommodations in order to do a job. That can be as simple as changing the medication schedule for someone whose medication makes them drowsy so they can take it after work, or setting alarms on their phones to remind them to take their medications while they’re busy at work.
“What data tells us is that job accommodations for people with severe and persistent mental illness usually cost less than $100 per person,” said Emery Cowan, who leads employment services at the Division of Mental Health.
“We know that people need support to maintain a career path; it’s not just a one-and-done thing,” Keul said.
And sometimes people need support to make a transition if they’re being laid off or fired.
“Work offers opportunity for people to assume valued adult roles,” Keul said. “When people are working, they’re more self-reliant and they begin to have a different feeling than simply the person that others are taking care of.”
And, she said, employers are the easiest people to convince. All they need is one good employee and “they totally drink that Kool-Aid. Because employers want and need valued employees.”
Both Keul and Edminster said that often one of the biggest barriers to people with mental health problems getting back to their lives are the people who provide them with care.
Some long-time employees in the mental health system said these changes have been a long time coming.
Steven Webster recently retired from Cherry Hospital, but prior to that he was the director of rehabilitation at Dorothea Dix Hospital until it closed. He said the staff at Dix were trying a similar employment program, working with a small group of patents.
Webster told a story about how when he was at Dix, one of his clients who lived in the hospital got a job in the community as an executive assistant. She eventually made more money than he did and was able to move out and live successfully.
“You need to give people the resources to help them participate in their rehabilitation,” he said. “They can recover.”
NC – US DOJ Agreement, Aug 23, 2012 (PDF)
NC – US DOJ Agreement, Aug 23, 2012 (Text)