By Taylor Sisk
Cherene Allen-Caraco uses an architectural analogy to describe recovery-based mental health care.
She has a vision of her dream home. She’s found a lot for that home and determined the style. She’s decided how many stories it will be, how many bedrooms it will have, what the fixtures will look like.
She then brings in an architect, who’s job is to help realize her vision. That architect brings “knowledge and information to help me make more informed decisions,” she said. “They don’t change my design; they help me perfect my design and make it work.”
That’s the spirit behind recovery-oriented care, said Allen-Caraco, CEO of Promise Resource Network, a Charlotte-based nonprofit that provides information, training and support for people in recovery, service providers, families and the community.
The job of a provider in a recovery-based model, she said, is to help the client determine, “‘What do I want my life to look like?’”
“My job,” she said, “is to give you enough information and help you overcome some of the barriers so your dream house can be built.”
Allen-Caraco shared her views while attending the sixth annual North Carolina “One Community in Recovery” conference held over three days last month at the Village Inn Event Center in Clemmons.
The conference is sponsored by a number of mental health organizations from throughout the state as an opportunity to share ideas on advancing a recovery-based system of mental health care.
Sessions this year included “Enhancing the Military/Veteran Recovery Team,” “Recovery Through Evidence-Based Supported Employment,” “Peer-Supported Transitions to Community Living” and “Using Technology to Support Recovery.”
The theory behind recovery-based care is that people with mental health issues should be helped to find their own paths back to good health, to being themselves. In a system of care that emphasizes recovery, people are encouraged to build on their strengths rather than trying to follow a pre-determined treatment plan that doesn’t take into account that person’s individual needs.
Recovery-based care also emphasizes helping people with mental health issues find hope. Peer support plays a major role in the model. Those who’ve found a path to recovery are there to offer that hope.
The Promise Resource Network is a peer-staffed agency.
‘Beat up, marginalized’
Mental health advocate Steve Miccio said of his emergency room visit and subsequent encounter with the mental health care system, “I went in Steve Miccio and came out a mental health patient.”
“I felt beat up,” he said. “I felt marginalized. I felt like a label, bipolar disorder, and I didn’t even know what that was. And I was scared to death.”
“All I learned was what doesn’t work; what didn’t work for me,” Miccio said, just after giving a presentation on the first day of the conference. He’d come down from New York to talk about something he now knows can work quite well: peer-run diversion services.
Miccio is CEO of Projects to Empower and Organize the Psychiatrically Labeled Inc., or PEOPLe, based in Poughkeepsie, a not-for-profit peer-run advocacy and crisis-diversion services organization and he was in North Carolina to present an example of how peer-run organizations can improve mental health care.
Miccio described how PEOPLe’s mission is to instill a sense of hope through self-determination for people living with mental illness, toward recovery and wellness.
But before he was a CEO, Miccio had a different title: patient.
Miccio said that when he was diagnosed with mental illness, not only did he feel as if he’d been affixed with an indelible label, he had begun to treat himself as such, as if the sum of him was “mental health patient.” If he was catching a cold, he said, his instinct was that it was mental health related.
His illness was his identity.
“I had to take my meds, follow up with the therapist and with the psychiatrist, so that I was the good patient, so that I could live in society again,” Miccio said.
He said there was nothing in his treatment that suggested recovery, and there was no one around him with whom he could identify.
PEOPLe is about taking a different approach. It’s about the giving and receiving of support among peers, among those who can relate to one another, those who’ve lived through similar experiences.
Staff members are placed in emergency rooms during peak hours, there to talk with those who come in with a mental health crisis, to orient them and tell them what they can expect – because they know firsthand.
PEOPLe also offers supported housing, a place to go when an ER is the only option. It offers in-home peer companions if you just can’t bring yourself to walk out the door. It provides phone-based crisis support at any hour.
It hosts nights out – book clubs, art shows, dances – and has even held a prom, aware that so many people who’ve suffered from mental issues since childhood never made it to their first one.
The philosophy is this: Recovery is the expectation, by a person’s own definition of recovery. It attempts to offer something to believe in by empathically listening, sharing experiences and offering proof that recovery is possible. “Here I am,” a peer can say, “to attest.”
Restoring agency
Miccio said people with mental illness too often encounter too many “shoulds.”
“You’re told, you should take your meds, or you should go see this doctor. Or you shouldn’t get into this relationship because it’s going to exacerbate your symptoms,” he said. “You shouldn’t work because that’s going to be stressful.”
But taking away the person’s agency almost invariably leads to shutdown. There needs to be conversation. Instead of telling people what they should do, Miccio’s organization’s approach is to help people realize what they can do.
“Sometimes people don’t know what they want,” he said. “But you continue the conversation, and you build a relationship.”
Miccio acknowledges that “empowering” is a well-worn word, but says it works nicely in this context. “It’s empowering people to understand that they can make the changes for themselves. The traditional system doesn’t give you that.”
PEOPLe, serving six counties, is state and county funded and is working to receive Medicaid coverage. According to Miccio, a stay at one of PEOPLe’s homes costs $193 a night compared with $1,500 for a psychiatric inpatient bed, for a savings of some $2 million per house, per year.
He pointed out that the program has also reduced hospital recidivism.
Sometimes it takes awhile: “We’re not going to say we have 12 sessions with you and we have to get to here in 12 sessions. It doesn’t matter to us. We’ll go as long as we have to go with you.”
PEOPLe is 100 percent peer run, and it’s the type of program Allen-Caraco and her colleagues attending the recovery conference want to see funded in North Carolina.
A new vision
Allen-Caraco was almost involuntarily committed to a mental health institution in her late teens. “The more I became exposed to the system, the more I realized it was broken,” she said. Nothing was done, she said, to help her “learn how to be well.”
By age 22, she’d become the director of a mental health agency in Vermont, working to realize change in that system.
She recently consulted with the staff at Broughton Hospital in Morganton on implementing the principles, processes and procedures of recovery-based care.
One objective was to reduce the frequency of restraints and seclusions. Broughton’s director of risk management Catherine Upchurch reported in a recovery conference presentation that restraints and seclusions at the hospital are trending downward since the training began last year.
And Broughton now has a new vision statement: “To be an exemplary environment of inpatient healing, hope, and compassion by partnering with individuals who have mental health and substance use needs.”
A recovery-based approach is about “truly valuing another human being,” Allen-Caraco said. “It’s striving to understand another person’s experience rather than labeling it.”
What’s required, she said, is a cultural shift in mental health care.
Allen-Caraco is excited that more people are attending the recovery conference each year, including state officials and hospital and service provider administrators.
“The truth of the matter is that if we continue to do what we’ve always done, we are going to continue to get what we’ve always gotten,” she said, “and what we’ve always gotten is not working.”
A radically different approach, yes, in that it requires a shift in perspective. But not expensive. It simply entails, Allen-Caraco said, re-examining “how we view people and how we connect with them. That’s what makes us recovery oriented.”
Additional reporting provided by Rose Hoban.
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What an exciting article! And what inspiring contributors and hard workers both Ms. Caraco and Mr. Miccio are! Thank you, Mr. Sisk, for helping North Carolina learn more about the potential of people deemed to have mental illness. If we focus on helping people envision themselves apart from their illness and to aim for their potential, we foster wellness together. Symptoms decrease and many people learn how better to manage them. By choosing to help people to reclaim more meaningful lives, we decrease stigma and discrimination. Recovery is about quality time between people and the blessed returns on that time well used.