A ‘person-centered’ approach to recovery
This is the final installment in a three-part series on the onset of psychosis in young adults, its treatment and UNC’s Outreach and Support Intervention Services program.
[OASIS series main page]
The UNC Outreach and Support Intervention Services program is the only one of its kind in the Southeast and among only a few such programs in the country.
Launched in 2005 with funding from the Duke Endowment and the Kate B. Reynolds Charitable Trust, OASIS has scrambled for funding since those grants expired in 2008. About a quarter of its clients are uninsured; those with private insurance and Medicaid are covered for only certain services.
The program’s objectives are to engage young people in treatment of the onset of psychosis and assist them in regaining social and occupational functioning, aiming to prevent disability from a psychotic disorder. It’s a matter of redirecting the course of the illness through early intervention.
Each client in the program has a “key worker” who’s responsible for engaging the client and family. That person serves as a case manager, primary clinician and therapist. Treatment planning is person-centered, focusing on the client’s goals.
OASIS sees young people who have had a first episode of psychosis or a new onset psychosis or who’ve had psychotic symptoms for less than three years. Typically, an illness like schizophrenia first occurs in late adolescence and early adulthood, though occasionally it strikes earlier.
Clients as young as 16 and as old as 36 have been treated at OASIS, but most are between 19 and 24, typically a tumultuous time in most anyone’s life. You’re trying to figure out who you are, where you’re headed – and now this.
Family members might notice a change in behavior. “It can go from isolating themselves to having a flat affect,” says OASIS program director Sylvia Saade, “like the emotions are not there or they feel they’re in a different space altogether. They’re into their own world.”
Or it could be something more severe: talking or smiling to oneself or a dramatic drop in academic performance.
At that early stage, the verdict’s still out on the course of the psychosis, and quite a few young people reach significant or full recovery, says Bebe Smith, an OASIS founder and co-director of UNC’s Center for Excellence in Community Mental Health, which administers OASIS.
“The exciting thing about early-psychosis work is that we’ve seen that with appropriate treatment, some people make very good recoveries from that initial stage,” Smith says.
“Some go ahead and become doctors or lawyers,” Saade says, “others adjust.”
‘On when you’re scared’
David Binanay was diagnosed with schizophrenia in 2006, when he was a year out of college.
In the early days of his illness, Binanay came to OASIS at least once a week.
“It was therapy, exercise, body health, medicine compliance, staying active, getting in groups and talking about your experience,” he says.
“You have to get out there and have those new experiences. You have to go on when you’re scared.”
Success in the OASIS program is measured by both symptom and functional recovery. Some see their symptoms go away completely; others will learn to manage those that remain. The success rate in terms of functional recovery, meaning returning to school or work, is 60 to 65 percent.
Service utilization is another measure of success at OASIS, defined by how many clients receive disability benefits, are hospitalized or have legal issues.
“How much we can save in taxpayer dollars is extremely important to knowing if our intervention is working,” Saade says.
OASIS is designed to serve 100 clients; the program is presently seeing about 130. It’s difficult to turn away those in need when their other options are limited or nonexistent.
“Other countries do a much better job in terms of early psychosis than we do,” Smith says, citing the UK, Australia and Canada in particular. These countries, she says, have countrywide initiatives targeting psychosis and getting kids into treatment very quickly if needed.
“Those countries do better because they have more cohesive health care systems and better social-welfare systems,” Smith says.
Life was good when Binanay was blindsided by his illness. He’s musically gifted and was a campus leader at Cardinal Gibbons High School in Raleigh and then at Villanova University. Schizophrenia arrived unawares, as it will, and overwhelmed the Binanay family.
“They had to go through a recovery process as well,” Binanay says of his family. “I think they’re still recovering.”
Family support very often plays a deciding role in recovery. Appropriate medication management to avoid or minimize side effects is another important element, says OASIS medical director Diana Perkins.
“You need a really good psychiatrist who knows these medications,” she says.
Most importantly, recovery requires finding the right treatment for the individual, and, Saade says, staying mindful that the illness need not be a debilitating one.
“We must take away that image,” she says, referring to popular perceptions of mental illness, “whether it is schizophrenia or bipolar or major depression, that I’m going to end up being homeless or on disability. No. We have people moving on with their Ph.D.s, getting married …”
Binanay is engaged to be married next year. He’s also founded a nonprofit called Music Over Mind, which brings music to hospitals and clinics while raising awareness about mental illness. He’s in a band called Black Heart Kings.
Binanay’s recovery took a long time, Perkins says. “He had multiple episodes until he figured it out.”
“When I got sick, I couldn’t speak, I couldn’t remember,” Binanay says. “Now it’s like, ‘Oh, I live here, I have this girlfriend, I play the violin.’ I can recall these things. Before it was just blank.”
“You have to rebuild the pathways of experience,” he says, “and that’s what I’ve done. I’ve stayed engaged, stayed active, and I’ve rebuilt those pathways.”
Binanay says that OASIS helped him understand from a medical perspective what was happening while remaining open to what he interpreted as a spiritual experience.
His support team accepts his belief that, “The mind wants to do all these things; it wants to build and put all these things together, and solve. [But] the heart’s already done it. The heart’s already won.”
That perspective, with OASIS’ support, has helped provide a pathway to recovery.
“They help you walk back to reality,” Binanay says. “They’ve really been the guide for me to come back.”
“It’s changed him,” Perkins says, “because it does in the same way that anything that’s traumatic or difficult will change the way you look at the world. But it’s good; he’s integrating in a way that’s good, and works for him, and he’s now moving forward in life.”
Binanay believes that while he was once quicker witted, he’s now more reflective.
“Whereas I once was like that,” he says, drawing his fingertips to a point, “now it’s more like this,” cupping his hands. That’s somewhat due to the medication, he says. “But that’s a choice I made, to be on medicine.
“I think I could go to some temple and get off my medicine, and I think I’d be OK, because now I know what to expect. But there’s that risk that you may not be able to come back. It’s been six, seven years to get to where I am today.”
Meanwhile, “There are a few new medications on the horizon that look promising, that work a little bit differently,” Perkins says. “We’ll have to see how those turn out.”
“We’re also just now beginning to get a handle on the genetic basis of the illness,” she says, “and what the different kinds of schizophrenia can be.
“We’re really at a point where technology, science is allowing us to explore these things in a way that we just couldn’t five years ago. So it’s a really exciting time to be doing this research.”
Will there be a cure in our lifetime?
“I think it’s certainly possible,” Perkins says, citing research she and others are doing with stem cells.
“Maybe if you catch it really early, you prevent it from happening in the first place.”
“Every day, every night, nonstop; you have to work at it,” Binanay emphasizes. “You have to move it around. You can’t just sit and let it heal itself.”
He welcomes the opportunities he has to talk with new clients. “I know what it’s like in the beginning, to be scared, to not know what’s going on; the change is happening, but then it’s, like, you do heal.”
“I want to try to give back as much as possible, till the end, keep on pouring it out,” he says. “Because I have so much to give. I just want to keep pouring it out.”
“It’s a process,” Binanay says. “I’ve got these apples in my orchard that are ready to harvest, because I did the work every day.”