Editor’s note: A new California law pressures more counties to adopt mental-health programs to reduce hospitalizations, homelessness and incarceration — and save money. (First of two parts. Part 2 can be viewed here.)

When Kaino Hopper’s 31-year-old daughter Christine adamantly refused – as she often has — the mental health treatment she so desperately needs, it was a rainy, blustery January day in Sacramento, and she was homeless, sleeping in fields and suburban parks. Her mother had few choices, and contacted her daughter’s caseworker for help.

But Christine again declined treatment or housing – although she accepted her mother’s offer of food, a sleeping bag and tarp. She could no longer live at home because of her combative, sometimes violent and assaultive, behavior.  A client then of Telecare, a mental health and recovery program with services in multiple counties and several states, she has been diagnosed with schizoaffective disorder, a complex combination of symptoms characterized by delusions, hallucinations, depression and wild mood swings.

 

All are treatable with medication and therapy, and Hopper says Christine has enjoyed periods of stability when she accepts treatment.

Like many mental-health diagnoses, hers include a combination of psychiatric and neurologic conditions that began to surface in her early teens, but were not fully diagnosed until she was 18. The youngest of three children, she receives federal disability payments and has lived independently for short periods, but mostly with her parents through much of her young adulthood. Her mother says she was recently dropped as a Telecare client because she was not responding to offers of help.

“Families are too often the designated caregivers,” Hopper, 64, says bitterly of California’s broken system of mental health care. “Yet we get very little acknowledgement or support.”

Kaino Hopper’s daughter, Christine, 5th grade.(Photo: Hopper family)

Her daughter was diagnosed with ADHD in high school, and with a type of neurological epilepsy, characterized by a “dream-like” state, rather than classic epileptic seizures. “She would just stare into space,” Hopper recalls. “I thought I just had a dreamy kid.”  Her daughter had below-average grades in elementary school, but thrived in an Independent Study program in middle school, and was placed in Advanced Placement classes in high school, graduating with honors and a 4.3 GPA.

An active volunteer with the Sacramento chapter of the influential National Alliance on Mental Illness (NAMI),  Kaino Hopper coordinates family support groups and advocates for changes in mental health laws. She is in the forefront of current local and state efforts to convince recalcitrant California counties – including Sacramento – to “opt in” to the recently strengthened “Laura’s Law.”  The statute provides for court-ordered, intensive treatment programs aimed at a small population of treatment-resistant mentally ill people, like her daughter, who comprise an outsized number of repeat hospitalizations, incarceration, homelessness and deaths.

If Sacramento County had such a “Laura’s Law” program, as 20 California counties do, Hopper is convinced Christine would get the help she needs.

“Other county programs don’t work for her. She has zero insight into her condition. She forgets how she gets better with treatment, but she cannot get treatment in Sacramento County without going to jail,” said Hopper, a textile artist  who has been published and exhibited internationally and served as a guest lecturer in design at UC-Davis and other area colleges. Focused professionally – and personally — on making life easier for the disabled, her Master’s project at UCD was on simplifying fashion design for women with disabilities.

Christine Hopper at her 8th birthday party, with her pet cockatiel perched on her shoulder. (Photo: Hopper family)

Like so many parents of mentally ill adult children, Hopper has had little time for her design work in recent years, as her daughter’s condition deteriorated.  She was hospitalized in psychiatric facilities six times during the first eight months of 2020 — never longer than 14 days under California’s outdated and highly restrictive Lanterman-Petris-Short (LPS) law, which has been largely unchanged since it was passed as a sweeping “reform” measure in 1967. She had four failed “room and board” placements, usually private residences with rooms to rent, where she either left, was evicted or denied housing because she refused to take a COVID test.

So, on Jan. 5, Hopper and the Telecare caseworker, a licensed clinical social worker, took the only path available to the families of severely mentally ill relatives in most California counties. They called 911, asking that she be detained on a 72-hour involuntary “hold” under LPS, which places strict limits on involuntary treatment and offers few if any alternatives. But the law enforcement officers who respond to such calls make the ultimate decision under the law, often regardless of recommendations by mental health professionals, and Hopper said they decided she “didn’t meet the criteria” to be taken to a hospital on a “5150,” the state code section governing involuntary holds for those deemed a danger to themselves or others.

“There is this terrible disconnect between what the mental-health professionals recommend, and what actually happens. [The officers] told me she knows her name, she has a sleeping bag, she’s eaten, and she’s not comatose,” recalls Hopper, who followed up with repeated calls and emails to Sacramento County Sheriff’s Department supervisors. “They said I should get a restraining order, so then she could be arrested.”

Lisa Dailey, an attorney who heads the national, Washington, D.C.-based Treatment Advocacy Center — and whose sister’s mental illness propelled her into mental-health law and advocacy — says family members “are entirely shut out of the system. A police officer who comes to the scene has no experience with this person, gets only a snapshot view.”

Christine Hopper in a photograph taken last year in Sacramento. (Photo: Hopper family)

From the streets to jail – and back again
Dailey says Assisted Outpatient Treatment (AOT, or Laura’s Law in California) services are  “misunderstood” by local and state behavioral health officials, who are often opposed to such programs because of funding issues and patients’ rights concerns.  “The services that are incorporated into an AOT plan already exist in many counties,” she says. “The difference is the court order. There is a real stubbornness to even try the program, despite its proven success.”

Multiple state and national studies of AOT programs indicate significant success in reducing hospitalizations, incarceration and homelessness among clients of local programs, but data collection is limited and inconsistent. In a scathing report on state mental health care last year by state Auditor Elaine Howle, she was particularly critical of poor or nonexistent follow-up and data collection for the thousands of people who are “processed” through a haphazard system of care.

In its most recent report last year, covering 10 county programs in 2018-19, the state Department of Health Care Services, which is required to issue regular reports on Laura’s Law programs (as are the counties, although many reportedly fail to provide data, with limited state sanctions), found significant reductions in homelessness, incarceration, hospitalization – including a 90 percent reduction in mentally ill clients becoming victims of crimes. The report also noted a 29 percent reduction in hospitalizations and 56 percent “fully engaged” in services, usually voluntarily, without the need for judicial intervention.

And AOT programs are widely known to save public funds, since those most in need of services are also the people who are repeatedly hospitalized, incarcerated and homeless.

Criminalizing the mentally ill is a tragic result of a state mental health system that lacks residential treatment facilities or adequate housing, and strictly limits involuntary treatment. It is a decades-old reaction to the forced detention and abuse of thousands of mentally ill residents in state mental hospitals, which were largely closed in the 1970s, leaving only a few facilities for those deemed criminally insane by the courts.

The “community care” touted as a replacement for the hospitals was largely nonexistent, leaving mentally ill Californians wandering the streets, cycling through hospital ER’s and jails, at huge public and human cost, exponentially worsened during the pandemic.

For nearly two decades,  Laura’s Law has been one of the few legal avenues available to families of severely mentally ill relatives — a non-criminal, civil court process designed to get family members into intensive treatment. While surrounded by counties with successful Laura’s Law programs, Sacramento County has steadfastly refused to adopt AOT, one of only two large California counties – the other is Santa Clara — without a Laura’s Law program.

Christine Hopper sleeping in a park in January. (Photo: Hopper family)

Now estimated to cover 65-to-70 percent of California’s population in 20 counties, the 2002 law is named for Laura Wilcox, a 19-year-old college student and high school valedictorian, who was killed in 2001 by a deranged mental patient in a Nevada County mental health clinic where she worked.

Although her killer’s family had been trying for weeks to warn local mental-health authorities about his alarming mental decline, the family (including a brother who was a Sacramento police sergeant) was ignored, and Scott Thorpe went on to kill two more in that rampage, seriously injuring three. In a lengthy, expensive court process, he ultimately pleaded Not Guilty by reason of Insanity, and will likely spend the rest of his life in Napa State Hospital for the criminally insane.

Amanda and Nick Wilcox, Laura’s parents, channeled their grief into changing the law, testifying in California and throughout the country for measures to reform mental health and gun laws. Nearly 20 years later, they say they are finally seeing real results, and were honored last year for their work in a California State Assembly ceremony.

They plan to retire this summer, moving to Colorado to be near their two sons. “It’s been a long struggle,” Nick Wilcox said in a recent Capitol Weekly interview about the law that bears their daughter’s name. “The way it’s set up, every county is on its own, so there has to be advocacy, holding [county officials] accountable, holding their feet to the fire.”

The original Laura’s Law, by then-state Assemblywoman Helen Thomson, D-Davis, a former psychiatric nurse and Yolo County Supervisor, is based on New York’s “Kendra’s Law,” named for a young woman pushed from a subway platform into the path of a moving train by a mental patient with more than a dozen previous psychiatric hospitalizations, one just six weeks before 32-year-old Kendra Webdale, a journalist from Buffalo, was killed in 1999. Forty-six states now have some form of AOT.

Intense debate in counties lacking ‘Laura’s Law’
Until this year, California counties could choose to quietly “opt out” of Laura’s Law, with limited or no public notice. Those counties that chose to “opt in” have shown significant cost savings and reductions in hospitalizations, incarceration and homelessness for a small subset of severely mentally ill people who refuse treatment. Many don’t acknowledge they are sick – a condition called anosognosia – and often “self-medicate” with street drugs.

But with the unanimous passage last year of AB 1976, by then-Assemblywoman (now state Senator) Susan Talamantes Eggman, D-Stockton, a former social worker and Sacramento State University social work professor, the law was considerably strengthened and finally made permanent, eliminating a “sunset” provision that required hearings every five years.

Counties can no longer “opt out” without providing specific reasons to the state Department of Health Care Services, which oversees Laura’s Law compliance in the counties. Perhaps most important, under the new law, county Behavioral Health Departments and Boards of Supervisors must hold public hearings.

With a May 2 deadline for submission of AOT plans to the state – or county board resolutions to “opt out” – counties throughout California are debating whether to adopt Laura’s Law. Nowhere is that debate more intense than in Sacramento and Santa Clara counties, where county officials and mental health advocates are speaking out in myriad, often heated public discussions that began in February, intensifying in March and April.

All of the public debate is virtual during COVID, and AOT supporters say much of it is controlled by county behavioral health officials long opposed to Laura’s Law. They complain that “public-input” hearings have been perfunctory and limited, with lengthy presentations, mainly on programs other than AOT, by local mental-health officials. Depending on the format in each county, public comments and questions have often been relegated to virtual, small-group “brainstorming” sessions and written submissions or completion of an online survey.

In two recent Sacramento County “community input” Zoom sessions on March 15 and 16, each one-hour hearing ended abruptly after 30 minutes, following brief presentations by county behavioral health officials, who provided short answers to a small number of questions posed by only a few of the many citizens who had signed up to participate (according to the county, 180 people signed up for the March 15 and 16 hearings).

At the end of each hearing, a link was provided to a survey in which to submit comments, and survey links were also sent by email, with 172 responses by March 22 — 74 percent supporting creation of an AOT program. County mental-health officials are reportedly planning another “public forum” in the coming weeks as a result of complaints from advocates and at least one county supervisor.

“Nearly 100 people participated [in the March 16 meeting], yet only a few questions were responded to,” said Carol Stanchfield, who has long directed California’s first Laura’s Law program, in Nevada County, under a contract with Turning Point Community Programs, a highly regarded nonprofit. “I asked multiple questions, but none were addressed.” She said the lack of public input prompts “many people to believe that Sacramento County Behavioral Health lacks the intent, or the will, to objectively consider AOT.”

Stanchfield’s objections mirrored many who signed up to testify and were troubled by the local limitations on a public-hearing process required by the new law. “There must be meaningful opportunity” for public comment under AB 1976, said Randall Hagar, longtime legislative advocate for the California Psychiatric Association, which sponsored the measure. While a “specific procedure” for public comment is not described in the law, he said many of the county hearings “clearly violate the spirit of the law. It’s supposed to be a robust public discussion, and this is turning out to be anything but.”

Next: Dispute intensifies over new Laura’s Law requirements as state deadlines loom. Click here for Part 2.

 Editor’s Note: Corrects spelling to Christine sted Christina throughout. Sigrid Bathen is a Sacramento journalist and former Sacramento Bee reporter who taught journalism at Sacramento State for 32 years. She has long covered mental-health issues for several publications, and her writing has won numerous awards. She has covered health care, education and state government for Capitol Weekly since 2005. Her web site is www.sigridbathen.com. She can be reached at sigridbathen@gmail.com.