By Taylor Sisk
This is the final installment in a three-part series on the onset of psychosis in young adults, its treatment and UNCâ€™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 programâ€™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. Itâ€™s a matter of redirecting the course of the illness through early intervention.
Each client in the program has a â€œkey workerâ€ whoâ€™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 clientâ€™s goals.
OASIS sees young people who have had a first episode of psychosis or a new onset psychosis or whoâ€™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 anyoneâ€™s life. Youâ€™re trying to figure out who you are, where youâ€™re headed â€“ and now this.
Family members might notice a change in behavior. â€œIt can go from isolating themselves to having a flat affect,â€ says OASIS program director Sylvia Saade, â€œlike the emotions are not there or they feel theyâ€™re in a different space altogether. Theyâ€™re into their own world.â€
Or it could be something more severe: talking or smiling to oneself or a dramatic drop in academic performance.
At that early stage, the verdictâ€™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 UNCâ€™s Center for Excellence in Community Mental Health, which administers OASIS.
â€œThe exciting thing about early-psychosis work is that weâ€™ve seen that with appropriate treatment, some people make very good recoveries from that initial stage,â€ Smith says.
â€œSome go ahead and become doctors or lawyers,â€ Saade says, â€œothers adjust.â€
â€˜On when youâ€™re scaredâ€™
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.
â€œIt was therapy, exercise, body health, medicine compliance, staying active, getting in groups and talking about your experience,â€ he says.
â€œYou have to get out there and have those new experiences. You have to go on when youâ€™re scared.â€
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.
â€œHow much we can save in taxpayer dollars is extremely important to knowing if our intervention is working,â€ Saade says.
OASIS is designed to serve 100 clients; the program is presently seeing about 130. Itâ€™s difficult to turn away those in need when their other options are limited or nonexistent.
â€œOther countries do a much better job in terms of early psychosis than we do,â€ 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.
â€œThose countries do better because they have more cohesive health care systems and better social-welfare systems,â€ Smith says.
Life was good when Binanay was blindsided by his illness. Heâ€™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.
â€œThey had to go through a recovery process as well,â€ Binanay says of his family. â€œI think theyâ€™re still recovering.â€
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.
â€œYou need a really good psychiatrist who knows these medications,â€ 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.
â€œWe must take away that image,â€ she says, referring to popular perceptions of mental illness, â€œwhether it is schizophrenia or bipolar or major depression, that Iâ€™m going to end up being homeless or on disability. No. We have people moving on with their Ph.D.s, getting married â€¦â€
Binanay is engaged to be married next year. Heâ€™s also founded a nonprofit called Music Over Mind, which brings music to hospitals and clinics while raising awareness about mental illness. Heâ€™s in a band called Black Heart Kings.
Binanayâ€™s recovery took a long time, Perkins says. â€œHe had multiple episodes until he figured it out.â€
â€œWhen I got sick, I couldnâ€™t speak, I couldnâ€™t remember,â€ Binanay says. â€œNow itâ€™s like, â€˜Oh, I live here, I have this girlfriend, I play the violin.â€™ I can recall these things. Before it was just blank.â€
â€œYou have to rebuild the pathways of experience,â€ he says, â€œand thatâ€™s what Iâ€™ve done. Iâ€™ve stayed engaged, stayed active, and Iâ€™ve rebuilt those pathways.â€
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, â€œThe mind wants to do all these things; it wants to build and put all these things together, and solve. [But] the heartâ€™s already done it. The heartâ€™s already won.â€
That perspective, with OASISâ€™ support, has helped provide a pathway to recovery.
â€œThey help you walk back to reality,â€ Binanay says. â€œTheyâ€™ve really been the guide for me to come back.â€
â€œItâ€™s changed him,â€ Perkins says, â€œbecause it does in the same way that anything thatâ€™s traumatic or difficult will change the way you look at the world. But itâ€™s good; heâ€™s integrating in a way thatâ€™s good, and works for him, and heâ€™s now moving forward in life.â€
Binanay believes that while he was once quicker witted, heâ€™s now more reflective.
â€œWhereas I once was like that,â€ he says, drawing his fingertips to a point, â€œnow itâ€™s more like this,â€ cupping his hands. Thatâ€™s somewhat due to the medication, he says. â€œBut thatâ€™s a choice I made, to be on medicine.
â€œI think I could go to some temple and get off my medicine, and I think Iâ€™d be OK, because now I know what to expect. But thereâ€™s that risk that you may not be able to come back. Itâ€™s been six, seven years to get to where I am today.â€
Meanwhile, â€œThere are a few new medications on the horizon that look promising, that work a little bit differently,â€ Perkins says. â€œWeâ€™ll have to see how those turn out.â€
â€œWeâ€™re also just now beginning to get a handle on the genetic basis of the illness,â€ she says, â€œand what the different kinds of schizophrenia can be.
â€œWeâ€™re really at a point where technology, science is allowing us to explore these things in a way that we just couldnâ€™t five years ago. So itâ€™s a really exciting time to be doing this research.â€
Will there be a cure in our lifetime?
â€œI think itâ€™s certainly possible,â€ Perkins says, citing research she and others are doing with stem cells.
â€œMaybe if you catch it really early, you prevent it from happening in the first place.â€
â€œEvery day, every night, nonstop; you have to work at it,â€ Binanay emphasizes. â€œYou have to move it around. You canâ€™t just sit and let it heal itself.â€
He welcomes the opportunities he has to talk with new clients. â€œI know what itâ€™s like in the beginning, to be scared, to not know whatâ€™s going on; the change is happening, but then itâ€™s, like, you do heal.â€
â€œI want to try to give back as much as possible, till the end, keep on pouring it out,â€ he says. â€œBecause I have so much to give. I just want to keep pouring it out.â€
â€œItâ€™s a process,â€ Binanay says. â€œIâ€™ve got these apples in my orchard that are ready to harvest, because I did the work every day.â€