I thought it would be different – California CARE (Community Assistance Recovery Empowerment) act experience
By: Anita Fisher
Anita Fisher is the mother of an adult son living with SMI, advocate, and a mental health family educator.
At 18, my oldest son joined the Army and became a medical specialist at Walter Reed Army Hospital. By age 21, he began experiencing changes in thought processes, behaviors, and even his appearance, which were eventually diagnosed as “paranoid schizophrenia.” His symptoms led to rule violations, resulting in a “bad conduct” discharge, meaning he was let go from duty with no health benefits. It would be fifteen years before my son was able to get his discharge upgraded to disabled veteran status.
As is common for individuals experiencing severe mental illness (SMI), my son used alcohol and street drugs to self-medicate, leading to a co-occurring substance use disorder (SUD) and heartbreaking cycle of homelessness and incarceration over two decades.
In 2022, I was excited to learn a California legal mandate was being developed to address the needs of those who experience the most SMI/SUD symptoms. At the time, people with SMI had to voluntarily ask for help before becoming eligible to receive it.
As we know, the longer that people with SMI are untreated, the worse their symptoms often become, placing families in the heart-wrenching position of calling 911 for a “5150” – an involuntary, up to 72-hour treatment hold. A 5150 is designed for people who meet criteria for being “gravely disabled” and/or pose a danger to themselves or others; it does not provide long-term treatment options for those with SMI.
In 2023, I had an opportunity to advocate for the California CARE (Community Assistance Recovery Empowerment) Act by participating, along with other family advocates, in a 60-Minutes segment with Governor Newsom. At that time, I and many advocates were under the assumption that the CARE ACT Court was going to have some judicial power, and not end up just another voluntary program, merged with equally ineffective voluntary programs.
The CARE Act passed in September 2023, ostensibly providing a pathway for petitioners to request voluntary treatment and supportive services for respondents who have untreated SMI, specifically schizophrenia or another psychotic disorder. It would not be long before I would need to utilize the new law for my son’s welfare.
In November 2023, I moved my son into a studio apartment, a goal he had throughout his then 24-year journey with SMI. A few weeks later, I recognized the telltale signs that all was not well. My suspicion that he had stopped taking his medications was confirmed when I received an eviction notice email from the onsite management team, detailing his concerning behaviors. I immediately called the non-law-enforcement Mobile Crisis Response Team. They declined to respond and quickly referred me to PERT (Psychiatric Emergency Response Team).
What followed was a case study on how difficult it is to get support for an adult with SMI, even when a family member is knowledgeable and proactive. Over the next several – and incredibly stressful for my family – weeks, the PERT made four visits to my son, who met the legal criteria for being “gravely disabled;” however, PERT staff maintained “he has his rights.”
On Thanksgiving eve, I hand-delivered to the courthouse the 15-page CARE Act packet, including documentation from apartment management, his mental health history, and my efforts to get my son treatment. I was notified he met the criteria for the CARE program, and they would outreach him at his apartment, from which he was on the verge of being evicted. My hope was this new CARE Act would get him the help he needed, involuntarily, if necessary, before he experienced the typical outcome of homelessness and incarceration. Sadly, I was wrong.
After weeks of contact from apartment management and my making crisis calls for help, I was relieved that my son was finally taken to the local veterans’ hospital on a 5150. That evening, the VA psychologist, case manager, and social worker called; all agreed that he was very ill and needed to remain for treatment. To my dismay, right at the 72-hour mark, I received a phone call from my son that he had been released.
His erratic and disruptive behavior continued, upsetting neighbors, and further jeopardizing his housing. Between filing my CARE Act petition and his eviction, the CARE team went to my son’s apartment every few days. He refused help and further decompensated. After his eviction, he stayed on the street near his apartment.
I attended his first hearing in January 2024 in person. My son did not attend; we had not heard from him in five days. The public defender, CARE clinician, and behavioral health services representative emphasized the voluntary structure of the process.
I spoke to the court about anosognosia (lack of insight), a common symptom of SMI, and how my son would not seek voluntary services due to his inability to recognize that he needed help. While the judge expressed empathy, she restated that the CARE Act was a voluntary program; the best she could do would be to flag my son in the system so that if he had another 5150, he would show up as needing a higher level of care.
The judge moved the next hearing to later that month, to allow the CARE team time to continue to try to convince him to voluntarily accept help. By the end of January 2024, after living in his third motel-based placement by the CARE program, my son was arrested again for his behavior. I cannot begin to describe my disappointment and heartbreak in how the system, yet again, and even with the CARE act in place, failed my son.
Update- Summer 2024
During his time in jail, my son agreed to work with the CARE program, but refused medication. The CARE judge stated they could place my son in an unlocked treatment program, but he must be on anti-psychotic medication for at least two weeks to do so.
My son finally agreed to take anti-psychotic medication and was placed in a program in June. I call this the “on pins and needles stage.” He looks good, his mental clarity is better, and he talks about the future.
I am happy I can see my son smile and hug him. But the time it took to get him to agree to voluntary treatment meant more of his mental abilities have been lost or damaged, and he can decide at any time to stop taking his medication and we will begin the cycle all over again.
To some, this article may seem like a litany of complaints, but others will find it familiar. Easy fixes to the CARE Act could go a long way in making the program successful. I hope our leaders will take the time to listen to experiences like mine and my son’s and make those fixes. Many lives depend upon taking the time and legislative effort to get it right.
