In December of last year, Evan, son of Brighid FitzGibbon, entered a catatonic state. Acute psychosis had suddenly increased a few weeks earlier toward the end of the fall semester of his sophomore year at Bard College, New York. Packed with terrifying delusions, his body began to shut down.
FitzGibbon and her husband Taylor took 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 with an early psychosis. However, the family quickly discovered a problem: the program did not exist in their county.
In California, geography creates significant barriers for people receiving early psychotic treatment, as well as a range of other evidence-based psychosocial treatments. This is partly because of 58 different mental health programs in California's 58 districts, each with its own service.
"Getting into a bus in Northern California and taking it to Southern California gives you different services depending on the location you're getting off," said Carmela Coyle, president and CEO of the California Hospital Association, a lobby group for state hospitals. "That's just unfair."
Dr. Tom Island, whom Governor Gavin Newsom recently named as his best mental health advisor, compared the fragmented system to 58-finger piano playing.
"Actually, there is no central leadership," said Island, the former director of the National Institute of Mental Health. If you ask, what do the counties want to achieve? What are your goals? What is your North Star? "I can not tell you, there is a North Star in LA County, in San Mateo, in Alameda, they are not the same."
Island and many other mental health experts say California provides too little guidance and oversight, to ensure fair access to psychosocial treatment and miss the opportunity to disseminate best practices nationwide.
He wants the state to set specific goals for psychological consequences, such as reducing suicides and detaining people He also wants the state to help counties to reach these goals, and its main priorities include early psychosis intervention.
"For most children receiving this type of treatment shortly after onset "It will be fine," said Island. "You can really live a life that today with the diagnosis of schizophrenia more is possible. "
Nationwide, about 100,000 teenagers and young adults suffer a first-onset psychosis every year – and three out of every 100 people will suffer from psychosis at some point in their lives.
In recent years, policy makers and providers of mental health programs for early psychotic intervention programs, which usually include intensive counseling, psychiatric treatment, as well as peers and family members, have received support from trained providers who work closely together to care for each patient to coordinate.
In 2016, the federal government provided 10% of community Mental Health Block Grants for early programming of psychosis. That's $ 9.5 million in California. Legislators this year have proposed allocating $ 20 million for the early programming of psychosis into the new California budget, which is $ 5 million less than the Governor's desired amount. The opposite is also the case: the longer the psychosis remains untreated, the worse the result. People diagnosed with psychosis die about eight times more often than people in the general population the year after their diagnosis. The cause is often suicide.
According to a national study, clients in early psychosis programs stay longer in treatment, have fewer symptoms at work or at school than patients in other care facilities – provided they get treatment quickly. A Canadian study published last year in the American Journal of Psychiatry showed that people who participated in an early psychosis intervention after their first episode died four times less likely.
In the US, people with psychosis received no treatment on average for 74 weeks. Other countries have drastically reduced this number.
Christine Marie Frey, 18, attended a psychosis program in San Diego Demons as a 12-year-old after starting her hearing. She is the author of "Brain XP: Living with mental illness, the perspective of a young teenager" (family photo).
Christine Marie Frey, now 18, attended a program in San Diego after she began listening to Demons as a 12-year-old. old. It offered personal and occupational therapy as well as help with mindfulness, taking medication and at school. Frey found solace in conversations with peers in similar circumstances.
"They helped me realize that I could not just cope – they helped me feel like myself again," she said. "I went in there to give up."
Early psychotic interventions may target young people with symptoms that are at high risk for psychosis, or those who have had their first experience with psychosis. Those in the first group could hear whispers, wondering if their brains play a joke on them. The second group rather believes that the voices are real.
In California, only about two dozen counties have early psychosis programs. Most lack the money or capacity to provide them to all inhabitants of the district. Often only persons without insurance or on Medi-Cal are eligible for low-income Californians, although in some cases private insurers pay for patients.
As a child, Evan was always a strong student and a talented musician and athlete, his mother said. However, as he neared the end of his fall semester, he increasingly worried about choosing a major and respecting the music deadlines.
He stopped sleeping for several nights. On his 20th birthday, a friend took him to the emergency room. He was on medication to sleep better, but it got worse and worse. His father raced across the country to bring him back to Sebastopol, provided the comfort of home would help. Then the delusions began.
After his parents learned about the early psychosocial program, they said that they had asked their insurer Kaiser Permanente for a transfer, but Kaiser refused.
In a statement sent by e-mail, Dr. Sameer Awsare: Kaiser, Deputy Managing Director of Kaiser's Northern California Medical Group, is not just an 'insurer' who pays for outside services.
"Kaiser Permanente is an integrated healthcare system that provides our members with expert, evidence-based medical care, including in the field of psychosis," said Awsare. He added that Kaiser adheres to federal "best practices" in cognitive behavioral treatment of psychoses and treatment of multi-family groups and, when clinically appropriate, refers to external programs.
He cited the patient's confidentiality when he declined to discuss Evans case.
But Evan's parents did not feel what Kaiser was offering – a General Intensive Outpatient Program, where most patients had no psychosis, a weekly psychiatrist meeting, and weekly therapy was sufficient.
So Evan's father drove him every week or so to the UC Davis Early Clinic for Diagnosis and Preventive Treatment, a state-of-the-art program in Sacramento. The trip took about four hours, and the family paid thousands of dollars for his care with the help of a GoFundMe account set up by his primary school teacher.
Evan stabilized and began to improve, his mother said. But the long journeys passed to her son and father, who had severe back pain. And the expenses became unaffordable. From a distance, it was difficult for Evan to participate in the peer group. Although Brighid FitzGibbon said they would have liked to continue, they did not have the choice to cancel the program for a few months in May.
"I do not know," said FitzGibbon, whose son gave her permission to share his program story. "It's only daunting to see how broken the system is, and I think we've done our best."
Bill Carter, who recently became Sonoma County's mental health director, said he was determined to have a morning psychosis there
] "It's the kind of thing we've been waiting for in the mental health field," he said. "In the past, schizophrenia and others have Thinking Disorders have the potential to destroy a person's life. "
Carter previously worked for the California Institute of Mental Health to disseminate evidence-based practices, including the early treatment of psychosis, and was also Director of Nursing Mental Health in Napa County Since 2014, all residents of the district have been receiving early psychosis treatment, regardless of insurance.
Napa managed to do so in part thanks to de Financed by One Mind, a nonprofit organization founded by the local Staglin family whose son, Brandon, recovered from schizophrenia in the 1990s and is now president. The Napa program is also supported by local winemakers, a major charity auction and a variety of federal and state funding sources.
Despite Carter's commitment to bringing early psychotherapy programs to Sonoma County, he has encountered significant obstacles. After the forest fires in 2017, there are huge budgetary constraints in the county – and psychiatric care is severely curtailed.
According to Carter, it is difficult to persuade the public to invest in a prevention program for relatively few people, especially when so many people are very ill people go without care. He would prefer the state to provide centralized leadership and support to help districts finance and develop early childhood programs.
Why is not there? Why do 58 counties do things in 58 ways? By design. In 1991, the state was facing a fiscal crisis and, in a process called "reorientation", shifted mental health responsibilities to the districts based on how much each county spent at the time. Over the years, these funds have not kept pace with demand, nor have they been adjusted to accommodate changing populations.
This is best described as follows: It is a broken delivery system. "
In 2004, California voters passed the Mental Health Services Act and imposed a tax on the millionaires of the state. It has donated more than $ 15 billion to mental health workers, who are channeling these countries to promote flexibility.
Districts say they have to be nimble. In such a huge and diverse state of California, the problems of rural Trinity County are different from those of urban Los Angeles. The approach, however, has disadvantages.
"There is not necessarily any purpose or reason why a county provides services and not others," said Sheree Lowe, vice president of behavioral health at the California Hospital Association. "The best way to describe it is that it's a broken delivery system."
What the state needs, Lowe says, are core services available in every community. She says that the state does not track which services are provided in each counties.
In 2012, the state closed its Department of Mental Health and transferred many of its staff to the Department of Health Services. Some feel that mental health continues to be affected.
"I think the counties have really been driven into the distance," said Randall Hagar, government director of the California Psychiatric Association, who represents the interests of state psychiatrists. "I agree with the assessment that there is still no state leadership."
This is not true everywhere. Oregon has a comprehensive state early childhood mental health program. The State of New York has launched OnTrackNY, a government-led initiative to provide young people with coordinated early psychological treatment. Dr. Island said he would like to see California make a similar effort.
Many people see hope for the future of an early one from the UC Davis Clinic, attended by Brighid FitzGibbon's son, Evan, and its director, Tara Niendam Psychosis intervention in California. In 2008, he recruited Cameron Carter, a prominent psychiatrist with a strong interest in early psychosis, introduced her to the Sacramento Clinic he founded.
The workforce today includes psychiatrists, therapists, a family lawyer and a specialist in education and employment, as well as a worker dedicated to the social needs of the patient, such as: B. Living space. Patients participate in peer support groups and families.
Too often, Niendam says, "people just float around in our system and sometimes get inadequate care." Effective mental health care does not make the symptoms disappear, she said. It gives individuals and families the opportunity to lead a meaningful life.
"That's more than a pill," she said.
One of the clinic's patients, Meheretab – who asked if his last name was not used – went to the hospital in Niendam after thoughts of suicide and hallucinations. Meheretab, who has Medi-Cal, said the rare treatment he received from Kaiser did not work. Niendam's clinic felt safe. With a combination of medication, counseling, support at work, and a peer group, he said, his depression subsided, and the hallucinations ceased.
"I feel better now," he said.
Niendam helped the provinces of Napa and Solano launch early psychosis programs, and is currently doing so with Yolo County. Small districts may have difficulty hiring and training staff required for a complete early psychological program. It therefore develops a possibility to conclude contracts with larger districts or to use telemedicine. She wants to expand the treatment model nationwide.
Watching people who have been hospitalized ten times, returning to school, or working full-time and showing that they can recover, "are the things that keep me going every day," she said , "It's changing for everyone, it's super exciting to be a part of it."
Jocelyn Wiener is a contributing writer to CALmatters, the fourth in our series "Breakdown : Mental Health in California, "was awarded a California Health Care Foundation grant.
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