Psychosis care model gives new hope to young patients

At 16, before his first psychotic episode, Charles Osugo was driven to become a nurse.

He sped through high school, graduating a year early. He took enough college-credit classes to leave with an associate’s degree, in addition to his diploma. Right away, he enrolled in nursing school

Then, all of a sudden, things started slipping.

Charles failed out of school. He switched into real estate, but as soon as he made some money, he overspent it.

His decision-making clouded. Voices sometimes suggested that he do something violent. He felt overly active and extra talkative. Charles was not totally aware that his behavior had changed.

By the time he realized he needed help, he had maxed out his credit cards. He was living in a homeless encampment. He went three days without sleeping.

In October 2022, he spent two and a half weeks in a psychiatric hospital. He was diagnosed with schizoaffective and bipolar disorders.

The hospital stay was stressful; the days after discharge were worse. Charles wasn’t used to his new medication, which made him sleep through most of the day at first. He would use his short waking hours to call his doctor and ask if there was anything they could do.

“I was stuck like that for months,” Charles said. “I pretty much cried to the doctor and said, I don’t have a life right now.”

That was when a doctor gave him an unexpected call. Charles learned that he’d been referred to the HOPE program. It’s an outpatient program treating first episodes of psychosis, operated by Hennepin Healthcare in Minneapolis.

“Psych ward, therapy and pharmacy — I thought those were my three options,” Charles said. “But now I see there’s so much more to it.”

A different approach

The HOPE offices are tucked into the psychiatric wing at HCMC. The staff do their best to make it welcoming, with art on walls, tea and coffee available. Sixty or so patients at a time are enrolled here.

Marielle Demarais is the director of the program. She meets with incoming patients and their families. Often they are still in crisis.

Patients often can’t fully recognize that their behavior is different than usual. Parents are often confused, too.

“There is a grief around it: they envisioned their life going on a certain course and trajectory, and everything changed,” Demarais said. “Often, it can feel quite sudden. There is a lot of loss in having this experience.”

Psychosis typically first presents between the ages of about 18 and 25, when adolescence already makes for a rocky few years. Symptoms can derail people from high school, college, first jobs and first homes.

Many psychiatric professionals say the onset of psychosis symptoms usually is the best time to intervene. Medication works better when patients start it early and stay on it.

And there are social factors, too. The earlier a patient gets treatment, the more likely they are stay housed and maintain connections with family and friends.

“If you left college this semester, and then are able to successfully re-enroll in the fall, that’s less of a loss than if you haven’t been able to get back in for four, five, six years,” she said. “We’re shortening how much time gets in the way of people getting back into their life.”

Participants connect with therapists and psychiatrists, a career or education counselor, a peer support specialist who has experience with mental illness and family educators who can talk to parents about how to help their kids. They all work together towards each patient’s personalized goals. It’s a model known as coordinated specialty care.

Demarais helped start the HOPE program in 2017, when the federal government set aside funding in the mental health block grant for each state to create first episode treatment programs.

Before HOPE, she spent much of her time working with people who had been living with psychosis for decades.

“It looked really different,” Demarais said. “Doing this early intervention work, it really does change what the trajectory of what a person’s future can look like.”

State-by-state patchwork

In the 1990s, Australia and Europe started testing first episode programs. Research indicated a big step forward. More people who were in these programs went back to work and school. Fewer went back to the hospital. 

But it wasn’t easy to get it working in the U.S. healthcare system.

Private insurance will usually cover psychiatrists and therapists, but not roles like family educators or career counselors. The result is a state-by-state patchwork of policies that make the services much more accessible in some places than in others.

In Minnesota, state and federal funds cover the programs, so patients typically don’t have to pay.

Maria Monroe-DeVita directs the first episode program at the University of Washington. State insurance covers the program, but most private insurers don’t. 

Some of her patients switch to Medicaid to afford the program. That’s not an ideal solution, she said. Getting on Medicaid can be a disruption to a young person’s life; the goal of the first episode programs is to limit disruptions as much as possible.

“Where we want to go with this is moving toward having more options, where kids who may experience first episode psychosis and are on their parents’ insurance can still stay on that insurance,” Monroe-Devita said. 

Those hard-to-finance parts of the programs are what set them apart.

When Charles Osugo started in HOPE, he set himself a couple of goals: Go back to college and go back to work. Just a few months later, his education counselor helped him re-enroll in school.

“It was honestly the finishing stages of turning my brain back on,” he said. “That really helped me, having that social inclusion again.”

‘No doors are really closing’

A year and a half has passed since Osugo’s diagnosis. Now, he’s back in real estate. He got a new job, too, working at a nonprofit on solutions to youth homelessness. 

So, when his exit date from the HOPE program arrived in March, he felt ready.

Demarais said the staff starts planning each patient’s exit far in advance to smooth the transition. She said that 70 to 85 percent of program participants stay at HOPE through their planned exit.

The HOPE staff celebrate each graduation with a little party. Charles, his parents, his siblings and friends packed into the conference room for pizza and parting gifts.

Charles gave a personalized goodbye speech to each staff member. He called his peer support specialist the English-speaking grandmother he never had. He dubbed his employment counselor his “fellow airheaded Gemini.” He said they’ve all seen him at his lowest, and his best. They’ve even seen his dance moves.

“I’m glad for HOPE,” Charles said. “A lot of people don’t get help early on. And sometimes it’s easy to think that recovery is an individual endeavor. For me, it’s been a group endeavor.”

Lawmakers and health care professionals are looking to expand the programs, also beyond early psychosis episodes. The life-changing care is still tricky to access — especially in rural areas and in states without solid funding systems, Maria Monroe-DeVita said.

In Minnesota, a bill under consideration in the state Legislature is seeking funding for first episode of bipolar programming, modeled on the success of early psychosis programs.

Charles says he hopes more young people can access this care. In another state, or another decade, he might have been stuck with hard-to-manage medications and little guidance in getting back on his feet.

Instead, he’s making plans for the future.

“I know that no doors are really closing on me,” he said. “Now I get to turn the page and start part two.”

This story is part of Call to Mind, an American Public Media and MPR News initiative to foster conversations about mental health. Listen for Call to Mind’s new broadcast specials airing beginning May 13. For more information go to www.mprnews.org/calltomind.

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