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A new approach to schizophrenia keeps young people in school, but insurance won't pay

ALINA SELYUKH, HOST:

Across the U.S., there's been a shift in how some doctors treat schizophrenia. The new approach is to intervene early, when psychosis first appears, and keep young people in school or at work so later they don't end up on the street. Studies show the treatment is effective, so why won't insurance companies pay for it? Here's April Dembosky of member station KQED.

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APRIL DEMBOSKY, BYLINE: It's 4 p.m. in downtown Redwood City, just south of San Francisco, and Monet Burpee is about to go job hunting - not for herself, for her clients who have schizophrenia.

MONET BURPEE: So I'm about to, like, give you the real experience.

DEMBOSKY: She smooths out her dress, touches up her lip gloss and walks into the movie theater, then after that, an Indian restaurant.

BURPEE: My name is Monet, and I'm a job coach.

DEMBOSKY: Monet starts her work with young people soon after they've had their first psychotic symptoms. She's tasked with keeping an eye on their future. If they want to finish college, she helps them stay in school. If they want to work, she goes scouting for jobs, chatting up restaurant managers to find a good fit.

BURPEE: So what positions are you looking for?

UNIDENTIFIED RESTAURANT MANAGER: One dishwasher.

BURPEE: Dishwasher?

UNIDENTIFIED RESTAURANT MANAGER: Yeah. A general manager here.

BURPEE: Ooh, OK.

UNIDENTIFIED RESTAURANT MANAGER: Yeah.

DEMBOSKY: Monet says helping her clients land a job is about helping them see themselves differently. Instead of living on disability checks, known as SSI, they can be independent, career-oriented people.

BURPEE: It has better long-term positive results versus you just sitting around on SSI.

DEMBOSKY: This is what she said to one of her clients, M, after she had her first psychotic episode. M was taking new medications that made her really tired.

M: Since I didn't really have anything to do, I would kind of just take super-long naps during the day.

DEMBOSKY: M is 21 now. NPR has agreed to call her by her middle initial and is using a recording that alters her voice because she fears the stigma around her mental illness could disrupt her career path. M first experienced psychosis right out of high school, while working her first job at a fast-food restaurant. She started to think her co-workers could read her mind.

M: I was like, are they talking about burgers, or are they talking about me?

DEMBOSKY: There was one co-worker in particular that she was pretty sure was watching her. One day, M got so scared, she locked herself in the bathroom. Her mom called 911. After a couple weeks in the hospital, M was diagnosed with schizophrenia. She was referred to the Felton Institute near San Francisco. It's one of 350 outpatient programs for early psychosis treatment in the U.S. Right away, M was introduced to a team of providers who would be by her side for the next two years.

M: First, I was set up with a therapist.

DEMBOSKY: Who taught her coping skills for paranoia and delusions.

M: A physician.

DEMBOSKY: Who prescribed antipsychotic medication.

M: OT therapist.

DEMBOSKY: An occupational therapist.

M: Peer specialist.

DEMBOSKY: A guy who also had psychosis and recovered.

M: Family support.

DEMBOSKY: A parent who coached her mom on how to help her at home.

M: I also was set up with Monet, which is the job coach.

DEMBOSKY: They filled out job applications together.

M: Next thing I know, I got hired.

DEMBOSKY: She started out as a cashier at a new fast-food restaurant, and within three months, she got promoted to a manager role. The state and federal government invest tens of millions of dollars into these specialized early psychosis clinics every year. But all this public money flows into public insurance programs like Medicaid, which in California is called Medi-Cal. Commercial insurance companies, like Anthem or Blue Shield, almost always refuse to pay for the full suite of services. Overall, this means only low-income families, like M's, can get the gold standard of care, while middle-class families cannot.

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TARA NIENDAM: It is a reverse disparity.

DEMBOSKY: That's UC Davis psychologist Tara Niendam. She testified in the California legislature about how this disparity shows up at her early psychosis clinic in Sacramento.

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NIENDAM: I can give the Rolls Royce of care if you walk in and you have Medi-Cal.

DEMBOSKY: But she says close to 60% of Californians have commercial insurance.

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NIENDAM: That's 60% of kids whose parents call me crying when I tell them they can't access my clinic.

DEMBOSKY: So what happens to these kids? Generally, they're on their own to find a psychiatrist and therapist who accepts their insurance. Health plans will pay for these medical services, but they won't cover anything else - the job and education support, the peer specialist, the family coach. Health advocate David Lloyd says this is discrimination. If someone has cancer, insurers would never just pay for surgery and radiation but not chemotherapy.

DAVID LLOYD: The idea that you can split apart the package of services and only reimburse for little components of it really destroys the whole evidence base of what the service is.

DEMBOSKY: Several states have tried to force insurance companies to pay for the full spectrum of early psychosis treatment. Illinois had some success. Massachusetts and Virginia are working on it. But in California, a recent attempt to expand coverage died under pressure from the insurance lobby. Nick Louizos is from the California Association of Health Plans. He says insurers don't like being cornered into specific treatments.

NICK LOUIZOS: Research evolves. There could be evidence-based techniques that are better in the future.

DEMBOSKY: There are about 80 studies that show this approach to early psychosis works. Patients who get it are more likely to stay in school, in jobs, in treatment and out of the hospital. But what isn't known is how long the positive effects last.

LOUIZOS: There is a lack of evidence of this model's long-term effectiveness.

DEMBOSKY: The private insurance restrictions create a perverse incentive for middle-income families who need help now. Some parents are so desperate to give their kids the best care, they actually drop them from their health plan and enroll them in Medicaid. Advocate David Lloyd says this means for-profit insurance companies are allowing the public to pay their bills.

LLOYD: That's not an appropriate role for taxpayers.

DEMBOSKY: For M and her family, the full-scope early psychosis care has been life changing. Recently, M has struggled with some of her symptoms. The difference is, now she knows what's happening. She knows how to quiet the voices, and she knows there are a half dozen providers who will pick up if she calls for help.

For NPR News, I'm April Dembosky in San Francisco.

SELYUKH: This story comes from NPR's partnership with KQED and KFF Health News. Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

April Dembosky