Kathryn carried a fresh pepperoni pizza into the visiting room, just as she had the week before and the week before that. Her son shuffled in barefoot through an opposite door that was unlocked by facility staff. The nervousness that led Kathryn to take two wrong turns on the familiar drive across the Santa Clara Valley disappeared when Andrew wrapped his arms around her small frame and long brown hair. She savored the hug, for the closeness it brought on this day and as a reminder of the years before Andrew went to the neighborhood party where everything changed.
They settled in at one end of a long table and Andrew quickly reached for one of the pizza slices, the tremor in his left hand a tell-tale sign of antipsychotic medication.
Kathryn, 72, tried to stay upbeat.
“Is your bed comfortable? Is the food good?”
Andrew, 49, nodded but didn’t elaborate. He spoke sparingly since arriving at the transitional housing facility a few weeks earlier. As he reached for a second slice of pizza, his gray-blue eyes drifted to the three other residents eating with their loved ones. Behind one family hung a beach-themed poster proclaiming Welcome to Paradise in sparkly pink letters.
“That’s good,” she responded.
Kathryn had been trying to talk with the court-appointed conservator, or guardian, about Andrew’s schizophrenia treatment for more than two weeks. She felt increasingly skeptical about his care. If Andrew’s tremor weren’t addressed soon, she worried it might become permanent. But more than anything, she was grateful he was safe.
She had spent much of 2022 in agony, searching for Andrew around the San Francisco Bay Area. On one cold February day, police in Redwood City called to say they had located him sleeping in a carwash. By the time Kathryn got there, he had slipped away, unhoused and unwell, once again.
It would be another 11 months until Kathryn secured treatment and shelter for Andrew through conservatorship. She turned to advocates and policymakers during those months in hopes of finding ways to reform California’s conservatorship system and spare other families from hardship. It is a challenge that the state legislature grapples with nearly annually. Kathryn agreed to share her experiences with conservatorship under the condition that she and Andrew be identified by first names only and that names of treatment facilities not be disclosed.
The term conservatorship made headlines two years ago during pop singer Britney Spears’ legal fight to regain broad control over her life and finances, but the complicated and divisive efforts to change policy have persisted largely out of the spotlight. Conservatorship, known as guardianship in most other states, comes in two forms in California: probate and Lanterman-Petris-Short (LPS). Probate conservatorship, the kind that Spears lived under, is designed for individuals with intellectual disabilities. LPS conservatorship is designed for “gravely disabled” individuals with serious mental illness who cannot provide for their own food, clothing or shelter.
During the 2023 legislative session, debate centered around one reform in a package of related bills introduced by Democratic Senator Susan Talamantes Eggman to expand the 55-year-old definition of “gravely disabled.” The proposed standard would broaden conservatorship criteria to include individuals with mental health or “substance use disorder” who are at “substantial risk of serious harm.” The bill’s language intensified debate among stakeholders looking to remedy the housing, mental health and addiction crises exacerbating tension and heartbreak throughout the state.
On one side are advocates who see the proposal as dangerously vague and a threat to civil liberties. Conservatorship policy “has always been ableist, it’s always been discriminatory and it’s getting worse,” said Clare Cortright, policy director of Cal Voices, a peer-centered advocacy group serving individuals with mental illness. She sees the proposed LPS criteria as “lowering the threshold on which we do these very harmful things.”
Opponents also worry that expanded criteria would bring more people into the conservatorship system without providing resources to interrupt the painful cycle between emergency facilities and homelessness faced by many unhoused individuals with mental illness.
“They go into these locked facilities, they’re stabilized and then they’re discharged to a homeless shelter,” said Samuel Jain, senior policy attorney with Disability Rights California. “Their mental health condition is exacerbated, and they end up in the same situation that they were before. And that’s not going to end by expanding the definition of grave disability.”
Supporters, including all 13 mayors of California’s biggest cities, see the proposed reform as a way to get help to mentally ill individuals faster. That gives Kathryn hope.
Long before conservatorship entered their lives, Kathryn enjoyed a strong relationship with Andrew. He was the third and mellowest of five children. Kathryn watched as Andrew adapted to the sports-obsessed family’s move from Iowa to the San Francisco Bay Area when he was in middle school. Following a divorce from her husband, Kathryn continued to support Andrew’s aspirations to work in medicine or engineering as he excelled in high schoolgifted-and-talented programs.
That future disappeared in one night.
Kathryn doesn’t know or remember all the details, but she knows that when Andrew was in his early 20s, he and his younger brother went to a party in south San Jose with friends near their former school. Andrew’s brother called Kathryn the next morning to say Andrew had been beaten unconscious during a fight that broke out at the party. Kathryn picked up Andrew as soon as she got the news and brought him to a hospital. His forehead was split open to the bone. The injury was severe but appeared temporary.
About a month later, Andrew approached Kathryn in a panic. There was a ringing in his ears that wouldn’t go away. The sounds morphed into relentless voices. Andrew’s job and girlfriend slipped away. Within six months, said Kathryn, doctors diagnosed him with schizophrenia.
Kathryn became Andrew’s court-appointed conservator without trouble, making medical decisions on his behalf while he fought the voices in his head. When she felt that role created tension in their relationship, she let a professional conservator with Santa Clara County take over.
Andrew eventually improved under the treatment and care the conservator facilitated, which led a judge to lift the conservatorship in 2008. But the stability did not last, Kathryn said. The next two decades unfolded in a turbulent cycle of medications working then not, housing secured then gone. She filled notebook after notebook tracking the changes that buffeted her and Andrew’s lives.
Kathryn struggled to find reputable facilities that could accommodate Andrew. The demand far outpaced supply. Since 1995, California has lost more than one quarter of psychiatric inpatient beds while the state’s population grew by 25 percent. At one group facility, Kathryn agreed to a boarding fee of more than $2,000 per month for Andrew to have his own bedroom. She later learned the staff moved Andrew to a garage dangerously overcrowded with 12 mattresses. What if there was a fire, she thought. She wished she could take him in, but between her day job working at an electronics manufacturer and her night job providing live-in care for an elderly woman, she knew she wouldn’t be able to offer the resources Andrew needed. By then, her ex-husband and children had scattered across the country. And so her search for care began again.
Things stabilized for a couple of years when Andrew responded well to a new medication. She found him a bed in a good facility not far away from where Kathryn lived. Andrew joined a work program at a nearby food pantry. She would call him every morning to make sure he was awake, and then he would walk the four blocks to get the bus to work. Andrew was featured in a local newsletter for his exemplary work. Then he began having convulsions. After Andrew struck his head and neck in the bathroom during one violent episode, his doctors stopped the medication. The convulsions stopped, but his mental state plummeted.
Kathryn agonized as Andrew fell through crowded care homes and shelters that would not or could not accommodate his worsening delusions or physical outbursts. She advocated for Andrew to relocate to a secure care facility but was denied. The roadblocks were so confounding that Kathryn wondered if a past provider had put Andrew on a Do Not Treat list. Getting nowhere, she sought to reestablish conservatorship to get himinto an upper level of care. This time, she couldn’t.
Conservatorship policy hadn’t changed; there had been no legislation or court rulings that revised the qualifying criteria. What changed was the application of the criteria to match the shrinking availability of resources like acute care beds or care homes, said Alex Barnard, an assistant professor of sociology at New York University whose research focuses on mental health law in California. With fewer places for conservatees to go, counties across the state were pressured to conserve only as many people as they could fit within their resource constraints.
Over Labor Day weekend in 2021, after several months of care homes passing him off, Andrew ended up hospitalized from punching his cheeks. Paramedics transported him to a hospital to clean the infected cysts that had developed on his cheekbones. Instead of holding Andrew post-surgery until a bed opened at a psychiatric facility, the hospital released him to the streets, Kathryn said. Andrew disappeared among the 115,000 other unsheltered Californians. Kathryn filed her first missing person report.
Echoing the tumult of the decades prior, Kathryn spent that autumn and nearly all of 2022 in a cycle of losing Andrew, finding him, trying to get him care, only to lose him again. There was the car wash incident. That same winter, a former caseworker spotted Andrew in downtown San Jose. Kathryn was able to find Andrew and put him up in a motel near her day job. For several days she brought him meals until one morning he wasn’t there. She called hospitals, police and jails daily. It took a week before she learned a jail in Alameda County had booked Andrew under the motel’s street name, since the police couldn’t identify Andrew when they found him on the street. By the time she figured this out, she said, Andrew had been released back to the streets. She filed another missing person report.
As Kathryn searched for Andrew, legislators passed a bill that Governor Newsom signed to overhaul California’s approach to mental health care. Press releases and news coverage trumpeted that the CARE Act would make it easier to get community-based care for individuals with severe mental health disorders, like Andrew. Individuals would be able to get treatment services like short-term stabilization medications, wellness and recovery supports, social services and housing, without entering the conservatorship system. The help never reached Andrew or Kathryn. Kathryn found and then lost Andrew a total of six times between September 2021 and December 2022.
The cycle ended shortly before Christmas. Kathryn was driving across San Jose on a frosty morning, praying as she often would that she would find Andrew. “Lord, please reveal his presence,” she prayed over and over again. She turned into a McDonald’s parking lot to get food and saw Andrew sitting on a curb.
Kathryn scooped up Andrew in her car, fed him, and brought him to emergency care. They were told to wait, despite being the only ones there. Andrew got anxious and indicated he was going outside to have a cigarette. He fled.
When the police found him at a nearby 7-Eleven, they told Kathryn that Andrew didn’t meet the criteria of grave disability so they couldn’t detain him involuntarily. Kathryn and the police asked Andrew questions but he had trouble responding. Kathryn pleaded with the officers, pointing out it was cold, Andrew had excrement all over his clothes and was obviously unwell. When they asked Andrew one final time how long it had been since he last ate, Andrew said two days. The officers present concluded Andrew’s inability to provide food for himself met the standard for gravely disabled. Kathryn doesn’t know what exactly it was about this encounter that made Andrew qualify in the eyes of the authorities when he hadn’t all the times before, but she was grateful. They called an ambulance and transported him to a hospital for care.
While at the hospital, a judge approved Andrew’s conservatorship. Andrew stayed for three weeks until a bed opened at an inpatient psychiatric service. His final and most recent transfer was to the boarding care home where Kathryn visited him.
Unable to bring Andrew home safely, she now made weekly pilgrimages across San Jose to see him, hoping each time that the mellow Andrew she knew might resurface. This visit on a brisk day in mid-May was no different.
Andrew finished the pizza and stood up. Kathryn asked if he was leaving and he nodded yes. It was only 18 minutes into the scheduled 30-minute visit.
“I get a hug,” Kathryn said as she stood up with him.
“Yes you do,” Andrew responded in a soft voice, before slowly adding, “in case I never see you again.”
Kathryn laughed weakly and said she will see him again the next week. She watched as staff unlocked the door and Andrew walked out of the room without looking back.
“For the most part, he’s not doing horrible,” one of the facility staff told Kathryn when she asked how Andrew had been the past week. The staff member said Andrew had been sitting in groups with other residents but stayed to himself.
Kathryn said she had been having trouble reaching the conservator. The conservator is often busy, the staff member said, since he oversees care for several residents. Kathryn responded, “It’s kind of important I know what’s going on. I’ll try him again.” A few days later, Kathryn would learn the conservator had retired several weeks earlier. Andrew’s case had fallen through the cracks.
The staff member turned and announced to the room there were five minutes left to visitation. With Andrew already gone, Kathryn gathered the box of pizza crusts and left.
Fog from the Pacific rolled over the valley’s western foothills as Kathryn drove home. She felt pleasantly surprised by the day’s visit. Andrew seemed a little better. It was a very good day, she thought to herself.
As she drove, she passed an expansive office park that used to be a mental hospital. It now sits mostly vacant, and the corporate owner wants to sell it. She wondered if the state would buy back the property to provide more beds for individuals like Andrew so desperately in need of care. It could provide the stable, quality care that she had so desperately searched for and that continues to elude so many other families across the state. She put her blinker on to turn right onto Hope Drive. She didn’t miss her turn.
