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Need help for loved ones with severe mental health illness? California has a plan

In Rancho Cordova, Calif., Diana and Lorrin Burdick host an informal support group lunch at their house for parents of children struggling with severe mental health problems, including schizophrenia and other psychotic disorders.
Eric Westervelt/NPR
In Rancho Cordova, Calif., Diana and Lorrin Burdick host an informal support group lunch at their house for parents of children struggling with severe mental health problems, including schizophrenia and other psychotic disorders.

On a recent afternoon Diana and Lorrin Burdick share pictures and swap stories with three other parents over a lunch of chicken curry sandwiches and fruit salad. They're hosting an informal but semi-regular support group at their home in suburban Rancho Cordova east of Sacramento.

"Yeah, she loves having family dinners. Sunday is family dinner day now," says Elizabeth Kaino Hopper as she and husband, Marvin, show a recent picture of their 33-year-old daughter, Christine.

This ordinary lunch with friends is also a vital one: Every parent here has an adult child with a severe mental illness; a son or daughter who's also struggled with homelessness, substance abuse and arrests. The gatherings give them the chance to share stories, strategies and challenges of having a child with a serious and untreated mental disorder.

"That's pretty much what he looks like now," says Diana Burdick as she shows the others a phone shot of her son, Michael, 49, who has lived on the streets for a nearly a decade.

"Aww, see, anybody looking at him would say, he's not right, he doesn't feel good," Elizabeth Hopper says, shaking her head in between lunch bites.

Eight California counties are going first in a planned statewide, controversial experiment to try to fix a seemingly intractable problem every parent around the table is grappling with: How to get treatment and support for loved ones with serious mental health challenges, mostly schizophrenia and other psychotic disorders.

Some of these people end up cycling in and out of police holds, jails, emergency rooms and homeless shelters and encampments. The nationwide problem is particularly acute in California, which accounts for nearly one third of all people in the United States experiencing homelessness.

Some cities including Los Angeles estimate that 10% to 17% of individuals who are unsheltered have been diagnosed with a serious mental illness. But the fact that so many go without a formal diagnosis, experts say the true percentage is likely far higher.

Diana Burdick's son used to play guitar in a band, loved to draw pen and ink landscapes and worked for a time as an electrician's apprentice, his mom says. But for years now, Burdick says, Michael has been wracked by delusions and paranoia and frequently self-medicates with narcotics, mostly methamphetamine.

He doesn't want any help, she says, because Michael refuses to think of himself as ill at all. "In fact, he thinks that he owns IKEA, and that I have a trust fund with Bill Clinton and that should be giving him monthly checks, and that's why he refuses to get care because he doesn't think that anything's wrong with him."

He wanders the city during the day and sleeps outside, she's not sure where. Several days a week, however, she drops off food and sometimes clothes for him at a store near her home that's run by a friend.

But she rarely stays to talk with her son. He often gets agitated, she says, and the conversation goes nowhere. A few times over the years he's gotten violent. One incident resulted in a restraining order after an attack sent her to the emergency room.

"In one of his psychotic stages hit me in the face and required 14 stitches. His psychosis at the time is that I caused hurricane Katrina. I'm very powerful," she says with a pained smile.

"We're just kind of waiting for him to get arrested – again - for something" she says, that might push him into care. An arrest for arson resulted in no mental health treatment because her son has never been formally diagnosed and police had no record of mental health issues. As Michael's step-dad, Lorrin Burdick, puts it, unless they can apply some pressure on him, he's very likely to stay on the streets mentally ill, drug-addled and lost.

"Kinda look at it like he's in that dark hole right now. And if you can force treatment on him there's a chance he could possibly crawl out of it. But without some way to force him to do something, he won't do it," he says.

California's Care Courts aim to assist people suffering with untreated severe mental illness

California's Care Court plan is part of the state Care Act, which passed the California legislature last Fall and signed into law by Gov. Gavin Newsom, who championed the project as a potentially transformative fix for a broken system.

"I'm not interested in the status quo," Newsom said at the bill signing. "I'm not interested in the compassionless-ness of the approach we have today of people moralizing and normalizing that suffering on the streets and sidewalks."

"Over time we are really going to give Californians a new tool to support our neighbors who are both experiencing severe behavioral health conditions...and their connection to issues of housing instability, homelessness and the inability to meet basic needs," says Dr. Mark Ghaly California's Secretary of Health and Human Services. "I think that is transformational, that is a game-changer."

Care Courts launch as pilots this October in the counties of Glenn, Orange, Riverside, San Diego, Stanislaus, Tuolumne, and the City and County of San Francisco, followed by Los Angeles County in December. Under the plan, a wide variety of people – including family, friends, first responders and clinicians – can petition a judge who could order mental health and other treatment and support under a two-year "Care Plan" that counties' behavioral health systems have to fund.

"Over time we are really going to give Californians a new tool to support our neighbors who are both experiencing severe behavioral health conditions and the sequelae of those conditions like psychotic disorders and their connection to issues of housing instability, homelessness and the inability to meet basic needs," says Dr. Mark Ghaly, California's Secretary of Health and Human Services. "I think that is transformational, that is a game-changer."

Dr. Ghaly estimates that Care Court will initially serve between 7,000 and 12,000 people across California.

The rollout is being met with genuine optimism from some families like the Burdicks, who've struggled for years to get help for their son.

But it's also meeting fierce opposition from some advocates who say the plan is coercive, dangerous and unconstitutionally vague.

Any Care Plan would, in theory, be individualized but would likely include clinical treatment, bridge housing and other vital support. Participants will have access to an advocate and public defender to help make decisions about treatment and housing. As the state's health and human services department puts it, the goal is to give ill person the tools they need "to make self-directed choices to the greatest extent possible."

"We're hearing from lot of families who have done everything that they've been able to do within their powers to care for their loved ones and still they haven't been able to see that person, you know, turn a corner or get to a place of wellness where they can even rejoin the family or community," says Dr. Lisa Wong, director of the Los Angeles County Department of Mental Health, by far the largest region setting up a Care Court pilot later this year.

"I think it's terribly frustrating and heartbreaking for a lot of these families," Dr. Wong says. "And I think that Care Court is going to really be another tool in our toolbox to help with that. But I don't think that it's the answer to everything."

Disability and civil rights advocates question the program's motive

Disability and civil rights advocates allege that the program is really coercion masquerading as care. Those who refuse or fail to meet conditions of their Care Plans could be compelled to comply and even be placed under a conservatorship.

"Care Court, as it's written right now, is unconstitutionally vague and it violates the civil rights of our clients with mental health disabilities who are homeless," says Christian Abasto, the legal advocacy director for Disability Rights California. The group is leading a coalition that has sued to stop the program.

Abasto worries the program will end up pushing many people into involuntary outpatient treatment. "It empowers parents, police, school persons to basically make an accusation and invoke the court system with potential confinement and potential infringement of the civil rights of people with mental health disabilities - when they have done nothing wrong," Abasto says.

The group says the Care Act expands an already problematic system of court-ordered mental health treatment "that goes back to the country's horrific history of ableism and subjecting disabled people to being a separate class."

"It's such a big lie," says Helen Tran, senior attorney with the Western Center on Law and Poverty, one of the groups that has filed suit to stop the Care Act, alongside Disability Rights California. "If it is truly voluntary, why do you need the Care Act at all?"

Tran worries people who fail to follow through on their judge-ordered treatment plans could be coerced into treatment to try to address the vexing political problem of Californians fed up with homelessness.

Tran sees it as a back-door attempt to expand conservatorship where ill people "risk losing so much more of their rights and their autonomy to control the type of medical care that they want, the housing that they want. It's just a difficult process to reverse so the risk of being permanently harmed by that, to us, is so great that it warrants the court's intervention before it's even implemented," she says.

Instead of funding new courts, the coalition wants the state to dramatically boost funding for existing mental health treatment and housing for homeless persons with a mental illness.

Outreach by social workers will be key to get people to participate voluntarily

Gov. Newsom, a Democrat, recently proposed$1.5 billion in new funding for interim or "bridge" housing for people with mental health needs transitioning out of homelessness.

He also proposed substantially expanding treatment of mental illness, substance abuse, and homelessness through a 2024 ballot initiative. If passed, a bond would fund construction of new residential treatment facilities for mental illness and substance use disorders, create additional housing for homeless veterans, and require at least $1 billion annually for behavioral health housing and treatment by amending the state's Mental Health Services Act.

Proponents also say any potential penalties for not complying with a Care Plan are being wildly exaggerated. The program hasn't even gotten off the ground.

Dr. Wong, the director Los Angeles' behavioral health system, stresses that for Los Angeles and other counties going first, outreach and engagement by social workers will be key to getting people to participate voluntarily so they don't end up in court.

But even if a case does end up in court, Dr. Wong insists, it's still a voluntary service. "You know, we're not holding people against their will. There's no involuntary medication order or anything like that. So people still have the ability to say no."

Dr. Ghaly, California's HHS director, does not rule out having more people moved into conservatorship under Care Court. "Absolutely that's a possibility. But my hope is that we see that potential as the reason why a lot of people do willingly and successfully participate in the program," he says.

Meantime, many parents say the Care Court experiment will surely be better than watching their loved one cycle endlessly between crisis police "holds," emergency rooms, jails, and homeless shelters or makeshift tent villages.

"The discussion is almost bird-walked into civil rights, when it needs to be about medical treatment," says Elizabeth Hopper who lives outside Sacramento. Her daughter Christine Hopper is a former honors student and athlete who for years now has struggled with schizo-affective disorder alongside homelessness, substance use disorder and run-ins with the law. Christine is doing better now, her mom says, thanks only to a diversion program that mandated treatment following a felony arrest for assault.

"Care Court could have saved at least seven or eight years of her life, and hundreds of thousands of dollars of revolving door ERs to psych hospitals back to the street," Elizabeth says. "It can sound like, 'Oh, the family just wants to lock people away' and that's just not true. What we're hoping for is enough treatment where our person will be able to stand on their own as much as possible."

NPR's Elizabeth Baker contributed to this report contributed to this story

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Eric Westervelt is a San Francisco-based correspondent for NPR's National Desk. He has reported on major events for the network from wars and revolutions in the Middle East and North Africa to historic wildfires and terrorist attacks in the U.S.