Last December, Brighid FitzGibbon’s son, Evan, entered a catatonic state. Acute psychosis had hit suddenly a few weeks earlier, toward the end of fall semester of his sophomore year at Bard College in upstate New York. Gripped by terrifying delusions, his body began to shut down.
FitzGibbon and her husband, Taylor, rushed their 20-year-old son to a hospital in Sonoma County, where they live. An acquaintance told them about a promising program for young people experiencing early psychosis. But the family quickly discovered a problem: the program didn’t exist in their county.
In California, geography creates significant barriers to people getting early psychosis treatment, as it does for array of other evidence-based mental health treatments. That’s partly because California’s 58 counties have 58 different public mental health programs, each with their own set of covered services.
“If you get on a bus in Northern California and take it to Southern California, you get different services depending on where you step out,” said Carmela Coyle, president and CEO of the California Hospital Association, a lobbying group for the state’s hospitals. “That’s just inequitable.”
Dr. Tom Insel, whom Gov. Gavin Newsom recently appointed as his top mental health advisor, has likened the fragmented system to playing the piano with 58 fingers.
“There’s no central leadership, really,” said Insel, the former director of the National Institute of Mental Health. “If you ask, ‘What are the counties trying to accomplish? What are their goals? What is their North Star?’ I can’t tell you that. There’s a North Star in L.A. County, in San Mateo, in Alameda. They’re not the same.”
Insel and many other mental health experts say California offers too little guidance and oversight to ensure fair access to mental health treatment, missing opportunities to spread best practices from individual counties statewide.
He wants the state to identify specific goals for mental health outcomes, such as reducing suicides and the incarceration of people with mental illness. He also wants the state to help counties achieve those goals. Among his top priorities: early psychosis intervention.
“For most kids who can get that kind of treatment soon after the onset, they’ll do quite well,” Insel said. “They can go on to really have a life that does not happen today with a diagnosis of schizophrenia.”
A
bout 100,000 adolescents and young adults nationwide experience first-episode psychosis each year, according to federal figures—and three out of 100 people will experience psychosis at some point in their lives.
In recent years, policymakers and mental health providers have grown enthusiastic about early psychosis intervention programs, which typically involve intensive counseling, psychiatric treatment and peer and family support, with trained providers working closely together to coordinate each patient’s care.
In 2016, the federal government set aside 10% of states’ Community Mental Health Block Grants for early psychosis programming; in California, that totals $9.5 million. Legislators this year have proposed allocating $20 million for early psychosis programming in California’s new budget, which is $5 million less than the governor sought.
Done right, research shows, the programs can dramatically help young people experiencing psychotic symptoms, with lasting benefits. The converse is also true: The longer psychosis goes untreated, the worse the outcome. People with an initial diagnosis of psychosis are approximately eight times as likely to die during the year following their diagnosis as people in the general population. The cause is often suicide.
According to one national study, clients in early psychosis programs stay in treatment longer, experience fewer symptoms are more involved in work or school, compared with patients in other care settings—provided they get into treatment fast. A Canadian study published last year in the American Journal of Psychiatry showed that people who participated in early psychosis intervention after their first episode were four times less likely to die.
In the United States, on average, individuals experiencing psychosis went without treatment for 74 weeks. Other countries have dramatically reduced this number.
Christine Marie Frey, now 18, attended a program in San Diego after she began to hear demons as a 12-year-old. It offered personal and occupational therapy, as well as help with mindfulness, medication and school. Frey found comfort in talking with peers in similar circumstances.
“They helped me realize, not just how to cope—they helped me feel like my own self again,” she said. “I went in there ready to give up.”
Early psychosis interventions can target young people with symptoms that put them at high risk for psychosis, or those who have had their first experience of psychosis. Those in the first group might hear whispers and wonder if their brain is playing tricks on them; the second group is more likely to believe the voices are real.
In California, only about two dozen counties have early psychosis programs. Most lack the money or capacity to make them available to all county residents. Often, the only people eligible are those without insurance or on Medi-Cal for low-income Californians, though in some cases private insurers pay for patients.
G
rowing up, Evan had always been a strong student, and a talented musician and athlete, his mother said. But as he approached the end of his fall sophomore semester, he became increasingly worried about choosing a major and meeting music deadlines.
For several nights, he stopped sleeping. On his 20th birthday, a friend rushed him to the emergency room. He received medication to help him sleep, but continued to get worse. His father raced across the country to bring him back to Sebastopol, assuming the comfort of home would help. Then the delusions started.
After his parents heard about the early psychosis program, they said they begged their insurance provider, Kaiser Permanente, for a referral, but Kaiser refused.
In an emailed statement, Dr. Sameer Awsare, associate executive director of Kaiser’s Northern California medical group, said Kaiser is not simply an ‘insurer’” that pays for outside services.
“Kaiser Permanente is an integrated health care system that provides expert, evidence-based medical care for our members, including in the area of psychosis,” Awsare said. He added that Kaiser follows federal “best practices” for cognitive behavioral treatment of psychosis and multi-family group treatment, and when clinically appropriate, Kaiser does refer members to outside programs.
He cited patient confidentiality in declining to discuss Evan’s case.
But Evan’s parents didn’t feel that what they said Kaiser was offering—a general intensive outpatient program in which most patients didn’t have psychosis, a meeting with a psychiatrist every few weeks, and therapy every week or so—was enough.
So Evan’s father drove him every week or so to the UC Davis Early Diagnosis and Preventive Treatment Clinic, a state-of-the-art program in Sacramento. The drive was about four hours round-trip, and the family paid thousands of dollars for his care, with the help of a GoFundMe account set up by his elementary school teacher.
Evan stabilized and began to improve, his mother said. But the long drives wore on her son and his father, who had severe back pain. And the out-of-pocket costs became prohibitive. Coming from so far away, it was difficult for Evan to participate in the peer groups. Although Brighid FitzGibbon said they would have liked to continue, they made the difficult choice to stop a few months into the program in May.
“I don’t know,” said FitzGibbon, whose son gave permission for her to share his story. “It’s just disheartening to see how broken the system is. I think we did the best we could.”
B
ill Carter, who recently became Sonoma County’s mental health director, said he is committed to bringing an early psychosis program there, calling it “one of the best things going.”
“It’s the kind of thing we in the mental health field have been waiting for,” he said. “Historically, schizophrenia and other thought disorders have the potential really just to ravage someone’s life.”
Carter previously worked for the California Institute of Mental Health, leading efforts to disseminate evidence-based practices, including early psychosis treatment. He also served as mental health director of Napa County, which beginning in 2014 has made early psychosis treatment available to any county resident who needed it, regardless of insurance.
