Anita Fisher has been here before. Her son has stopped taking his medication. Again.

“Nothing has changed,” she said. “Yes, there have been new programs out there, but unless he voluntarily” — Anita gives a quick, doubtful chuckle — “accepts it, that doesn’t work.”

Anita’s son was diagnosed with schizophrenia two decades ago. What followed was a series of setbacks: A bad conduct discharge from the U.S. Army, a prison term and months of living on San Diego’s streets.

Anita struggled, too. As she maintained a career — and raised another child, born 10 years after his brother — she and her husband spent hours driving around San Diego looking for him. She’d get him into housing, but it would never quite work out. He’d get help sometimes, but landed in jail on multiple occasions. She would try again and again, unsuccessfully, to convince her son he was sick and needed help.

For years, Anita tried to convince decision makers, from medical providers to staff in San Diego County’s public conservator office, that her son’s mental illness was so severe that he needed help — even if it meant treating him involuntarily.

In 2014, there was some action: Anita’s son was placed on a conservatorship, a decision that puts some of an individual’s most significant life choices in the hands of someone else. He lasted about two weeks at a treatment center before being released.

“Families are not invited to the conservatorship process,” Anita said. “And guess what? We get back the collateral damage.

“So when they are let out of a hospital too soon, and then they’re arrested again, it’s us having to run to court hearings. Nobody shows up for that. We are the ones that have to try to find them on the street.”

Relatives who spoke with inewsource about their loved ones’ yearslong struggles with severe mental illness shared similar stories: Their family member was often known to law enforcement, the Psychiatric Emergency Response Team that responds to emergency calls, and the hospitals where they were taken while in crisis. Some cycled in and out of shelters and other living arrangements.

They may have voluntarily sought treatment at times, but inconsistently, and their situation quickly deteriorated without it — and often, their loved one was unaware of their own mental health condition.

LPS conservatorships, named after the state’s Lanterman-Petris-Short Act, give counties the power to mandate treatment and place a person in a locked facility if that person has been diagnosed with a severe mental illness specifically cited in the statute — schizophrenia, bipolar disorder or major depression, among others.

The person must also be deemed “gravely disabled,” meaning they’re unable to provide for basic personal needs such as food, clothing or shelter as a result of their disorder.

Anastasia, a San Diego mom whose adult son was diagnosed as a teen with bipolar I with psychotic features, spent much of the COVID-19 pandemic searching for him as he slept on benches and in parks across the city. He frequently went months without treatment, was held on multiple 72-hour hospital stays while in psychosis and neglected his physical health.

Anastasia, who inewsource is only identifying by first name, thought her son was close to being placed on a conservatorship last year, as discussions took place while he underwent yet another hospital evaluation.

Ultimately, it didn’t happen.

“No one cares about this kid,” she said with tears in her eyes. “He’s 26 years old. He was 25. He has a whole life ahead of him and the potential to do something – to live a life. And (they) don’t care.”

Now, officials have turned to potentially expanding conservatorships as part of a solution to the state’s homeless crisis. And those who have spent decades trying to help their loved one with a severe mental illness have largely been in support — Gov. Gavin Newsom’s newly approved CARE Court, which will create a separate court process that could eventually lead to a conservatorship, is backed by the California chapter of the National Alliance on Mental Illness, a group founded by family members.

But some advocates have raised concerns, saying CARE Court will divert resources from people who need housing and services — and shouldn’t be used “as an end run around reform” to the LPS Act. In a letter to the governor earlier this month, Disability Rights California and more than 50 other organizations said the program “is exploitative of poor people who need mental health care and will create a chilling effect preventing people from seeking treatment and care.”

inewsource spent months speaking with dozens of people who said gaps in the system and other longstanding problems have plagued the conservatorship process, from a shortage of resources and services, to the lack of clear data on how well the current system is working and lax state oversight that’s left counties to largely take on the challenges alone.

“We have the law we need for the society we’ve got,” said Joseph De Vico, a former employee in San Diego’s public conservator office. He now works with families and people with severe mental illness as a consultant on LPS issues, and previously was hired by Anastasia.

“What would we do for the severely mentally ill if we were a better society and we actually gave a crap about them, that’s a completely different conversation, which I would also hope to live long enough to be part of.”

But he’s not exactly hopeful.

“We don’t really care. We don’t prioritize the severely ill,” he said. “We’re not gonna become a different society with different priorities. So we have to accept that we only care as much as the LPS Act reflects.”

‘Do you know where your son is?’

Anita’s home, tucked away in a hilly Spring Valley suburb in East County, is an homage to her family — and to a cause she found herself intimately involved in after her son’s diagnosis.

Photos lining walls and console tables display relatives that go back generations; another shows her with her husband and son, grinning mid-laugh while at a taping of “Let’s Make a Deal.” Next to it is a photo of her standing with Newsom, when she met the governor to talk about her family’s struggles.

Down the hall, her home office stores stacks of binders involving her advocacy work.

Anita switched career paths after her son was diagnosed, leaving the banking industry after 30 years. She worked as director of education at NAMI San Diego for more than 10 years, helping coordinate family support programs before semi-retiring. She continues to serve on several boards, including at PERT and the state’s Council on Criminal Justice and Behavioral Health.

The people attending support groups and other programs are in crisis, Anita said, and she hasn’t seen the number of attendees drop since her work began.

“If you have over 300 family members going to a 12-week course, or over 1,100, going through support groups, that means something isn’t working with this system of care,” she said. “There are too many gaps and holes.”

Anita’s son, who inewsource agreed not to identify by name, joined the Army after high school and became a medical specialist assigned to the Walter Reed Army Medical Center. Anita was proud of her son’s accomplishments, and confident his life was headed in the right direction.

Then, during one trip home, she took notice.

Anita said her son seemed disorganized. He also was drinking heavily. She had to rush him to get his things packed when his leave was over. At the end of the trip, she drove him to the airport to catch a plane back to the Washington, D.C., area.

Her phone rang a few days later.

“Do you know where your son is?”

His sergeant informed Anita that her son never made it back to work. He was later located, inexplicably, in Pennsylvania.

What followed was a downward spiral that ended his Army career. It was at his military trial that Anita first heard anything about her son being sick: “Schizophrenic form disorder,” a psychologist would say on the stand.

He was kicked out, on a bad conduct discharge that cut off access to any income or benefits. When he returned to San Diego, Anita said homelife got disruptive. Conversations turned into arguments.

She wanted him to get a job and was frustrated by his seeming inability to move forward. She says she realizes now that she didn’t fully understand his mental illness.

Anita’s oldest son, then in his early 20s, couldn’t stay home. He became homeless, cycling between shelters and jail or prison for what Anita said were largely petty theft or drug-related crimes.

She estimates he was homeless for about eight months — the longest he had been on the streets — when his conservatorship process began. He had been taken to the UC San Diego Medical Center on a 72-hour involuntary hold under what’s commonly referred to as a 5150, in reference to a section of the state’s Welfare and Institutions Code. Officials determined he needed to be held longer.

Though he was being placed on a conservatorship, Anita said her son was in agreement to stay up to six months at the Alpine Special Treatment Center, a 128-bed locked facility.

Anita said the family visited and encouraged him to continue seeking treatment. But two weeks into his stay, he called his mom: He told her he was leaving after getting assistance from patient advocates, she said.

“The family are the ones who know from a historical place how long someone might need,” Anita said. “And I knew it was too soon.”

Anita’s son went missing. He emptied $5,000 from his checking account, and within days, was back in jail. He later didn’t know what happened to the money, Anita said.

Anita is frank about her frustrations. She believes her son, who also is diagnosed with substance use disorder, at times was put in jail when he should have been taken to the hospital instead — and she believes it’s in part because he’s Black.

Statistics from the American Psychiatric Association report that only one in three African Americans who need mental health care services receives it, and that Black people with mental health conditions — particularly schizophrenia, bipolar disorders, and other psychoses — are more likely to be incarcerated than people of other races.

Anita also blames patient advocates for her son’s short-lived conservatorship: They fought to get him out of a hospital where he was receiving what she considers life-saving treatment, she said, but they weren’t on hand when he was taken to jail.

A failed attempt

Anastasia documented and organized every time it got rough, from when she called police to the home or the multiple times her son went missing. She attended a family support group — and continues to do so — and even hired a consultant to pursue a conservatorship.

It wasn’t enough.

“I have done everything everyone has told me to do, and it has not made a difference,” Anastasia said.

inewsource agreed to not identify Anastasia by her full name, or her son, as he continues his recovery. Her son now is living at home and continues to participate in an assertive community treatment program, which offers case management, housing assistance and other services for people who have been homeless and have been diagnosed with severe mental illness.

That’s a far cry from early 2020, when “it was just off the rails,” Anastasia said. Her son spent two years cycling between living on the streets and independent living facilities. Twice, he went missing and later was found to have been in Mexico.

Anastasia’s son refused to take his medication, her one rule for living at home. He left and initially stayed near their Clairemont neighborhood, sleeping in a nearby park.

She watched from a close distance. She’d spot him at a nearby gas station during a coffee trip, or walking along the street in psychosis, yelling. The cycle of calling PERT, which includes licensed clinicians, paramedics and specially trained police officers, began.

“I was naive,” Anastasia said.

Her son had “not a dime to his name,” she said. He lost most of what he took from his family home within days, and had no way to eat. As a teen, he had been hospitalized during arguably less severe crises, she said.

“I just had no reason to think that this was gonna go on for any extended period of time,” she said.

Sometimes, PERT would place her son on a 5150 — like when he stood for 36 hours on a street corner while in psychosis, Anastasia said, convinced he was going to be picked up by a record producer and taken to a Los Angeles mansion to make music. Other times, clinicians weren’t available to join officers on the call, or teams responded and decided against taking him to the hospital.

When Anastasia found her son sleeping at an Ocean Beach bus stop after he went missing for nearly two months, PERT determined he didn’t meet the criteria: He told the team he was able to feed himself with leftover meals from passersby, and he had a friend in Point Loma who occasionally let him stay over.

It didn’t matter that her son looked like he had lost as many as 30 pounds, Anastasia said, or that his Point Loma friend hadn’t lived there for quite some time.

She estimates her son has more than 40 interactions with PERT or law enforcement.

“I cried more times than I can count,” Anastasia said. “I didn’t sleep more times than I could count. I got up and drove in the middle of the night more times than I could count. I spent every free moment I had outside of work, evenings and weekends, driving around looking for him.”

Late last year, Anastasia’s son began having altercations with other tenants in shared-housing facilities where he was living. He threatened violence. And he later threatened violence against his mother, too.

Again, she got PERT involved. Her son was picked up in Chula Vista and placed on another psychiatric hold. Anastasia was told he’d be held longer, this time on a 14-day stay known as a 5250.

Anastasia again thought that this was it. Officials with his treatment program were in agreement and pushing for a conservatorship.

But a psychiatrist disagreed, she said, and declined to file a gravely disabled petition for her son.

Anastasia was floored.

‘How long?’

Anita’s son lives in what’s known as an independent living association home. She said his recovery goes through waves: At times he has voluntarily stuck to his treatment and his medication, even participating in NAMI and other peer-recovery programs. Several years ago, with the help of Veterans Affairs representatives, he was able to upgrade his bad-conduct discharge from the Army and receive disability benefits.

But last year, he was again hospitalized for a psychiatric crisis. And though he was on a monthly shot for his medication, Anita said last month he recently decided to stop taking it.

“It is draining,” Anita said. “But do you ever give up on someone you love? No.”

After a psychiatrist did not move him forward for conservatorship, Anastasia’s son briefly moved into another living facility, and initially refused to go to a hospital for an infection that developed on his foot. It got so severe that tests revealed he had sepsis and was also suffering from malnutrition, Anastasia said. Her son spent a total of 11 days on IV antibiotics.

Anastasia said he’s continuing to go to treatment and is taking his medication. The ultimate goal, with the help of his community-based program, is for her son to move into his own housing. He recently heard he’s next on the list for placement.

Anastasia said she’s been following CARE Court, which is expected to be implemented in San Diego by October 2023. She wonders whether the new program will be able to meet the urgency of situations like her son’s.

“Is it a month? Is it six months? Is it a year? Is it the rest of his life? How long does he get to do it?” Anastasia said.

“How long does he get to fail before someone intervenes?”