By the time Lisa’s son, James, was in his 20s, he was convinced the FBI was watching him. His sister no longer wore earrings around him because he believed they were microphones, and at home, ceiling fans were torn apart in search of cameras he believed were planted in them. Eventually, blackout curtains had to be kept closed at all times to stop the government from spying, as his mind relentlessly tormented him.
In James’s late teens, Lisa first began noticing he was experiencing early symptoms of psychosis. He was eventually diagnosed with schizoaffective disorder; an illness that would involve countless hospitalizations, suicide attempts, overdoses, and traumatic police encounters, which, on one occasion, led to James being shot with rubber bullets, while unarmed, during a mental health episode. As often happens with psychotic disorders, ‘crisis mode’ became the family’s norm.
Hearing voices telling him to kill himself or to crash the car he was driving, each day took immense strength from James. Despite the challenges of his illness, he was determined to keep working at his job as a day trader. This was his biggest passion, and his natural talent had quickly made him one of the top performers at his firm. But as his cruel illness progressed, work became one more thing it stole from him.
Then, not long after James’s 29th birthday, Lisa received a phone call that changed everything. After a decade of desperately trying to prevent it from happening, she heard the real-time unfolding of her biggest fear becoming a reality:
Her son’s final decision to end his life.
The fact that James’s suicide happened, with all its alarm bells, reflects the shameful state of our broken mental health system and its excessive legal barriers to treatment for those with severe mental illness. James was a best case scenario as far as a support system. While many people with psychotic disorders are left to fend for themselves - given up on - Lisa couldn’t have fought harder to get her son the help he needed. She became an expert in his illness and in the policies she was up against. But she was met by insurmountable systemic barriers, learning early on that the support they needed simply did not exist.
A year before his death, James was hospitalized for an overdose; an attempted suicide that was so severe, he was put into a coma for several days. When he woke up, he was no less suicidal, but he told hospital staff he was now fine. Although his family expressed their serious concerns about his safety and mental state, their pleas that he be kept for psychiatric care went unheard. Hospital staff stated they ‘didn’t think keeping him there would accomplish anything’ and James was sent home without a follow-up plan. Due to laws restricting involuntary treatment, coupled with professionals often unwilling to deal with an illness they deemed too difficult, this scenario played out often.
Still acutely mentally unwell, James was taken back to the emergency room by paramedics only hours after being discharged. And over the last year of his life, he’d be back 6 more times, only to face the same outcome. Each hospitalization was a painful reminder that Lisa was on her own; that the burden of managing James’s illness fell solely on her in a way that would have been unthinkable if her child had a life-threatening physical illness.
Lisa recalls the happy and energetic kid James once was. An elite-level soccer player, he was known as an unwaveringly loyal friend with a quick sense of humor, who was always making others laugh. Years of helplessly watching her son deteriorate while so-called professionals continued to turn him away, or blame his crises on “bad behavior,” ultimately contributed to Lisa’s own diagnosis of post-traumatic stress disorder.
Lisa and James’s story is made all the more disturbing by how common it is among families trying to support loved ones with neurodevelopmental psychotic disorders [1][2][3].
The serious and complex nature of these disorders - often referred to as severe mental illness (SMI) - makes involuntary treatment an important option in the stabilization process. To receive involuntary mental healthcare in the U.S., a person must be deemed a danger to themselves or others [4][5]. This sounds reasonable in theory, but in practice, it has led to a system that waits until it is far too late to help someone. Narrow interpretation of this law has created a standard for ‘dangerousness’ that is nearly impossible to meet, and treatment is routinely withheld until serious harm has already occurred. In James’s case, even a coma wasn’t considered enough to meet criteria.
In his book, Crazy: A Father’s Search Through America’s Mental Health Madness [6], Pete Earley recounts a similar experience taking his college-aged son, Mike, to an emergency room during a psychotic episode. Despite being visibly delusional and having expressed suicidal thoughts, Mike’s ability to sit in the waiting room for 4 hours was enough for staff to determine the danger posed by his condition wasn’t imminent enough to warrant treatment. He was turned away, despite Pete insisting he needed help. Within just 48 hours, Mike was in police custody with two felony charges, having broken into and damaged someone’s house after wrapping his head in tinfoil to stop the CIA from reading his thoughts – an arrest that can only be attributed to a neglectful mental health system.
Mike hadn’t been attending his appointments nor taking his medication, and because of his age, there was nothing Pete could do. On top of the absurdly high standard for dangerousness, the 1996 Health Insurance Portability and Accountability Act (HIPAA) creates further legal barriers for families trying to support their loved ones. A federal law designed to protect patients’ privacy [7], HIPAA has had the unintended consequence of systematically preventing families from being informed and involved in care [8]. This is because once a child reaches the age of medical consent, information on their treatment, including medication or missed appointments, can be legally withheld. That age varies by state, but typically ranges from 12 to 16 [9].
“Parents are given the responsibility to provide care, but not the authority” once stated the late DJ Jaffe, former executive director of the Mental Illness Policy Org. Many caregivers refer to this as “the HIPAA handcuffs. [10]”
The harm caused by withholding treatment is irreversible since without consistent medication, psychotic disorders are progressive diseases. Each additional psychotic episode causes further structural and functional damage to the brain, and as a result, untreated psychosis increases in frequency and severity over time. Medication is crucial for recovery and the earlier someone begins consistent medication, the better their prognosis [11].
Unfortunately, consistent medication is not so simple.
A complicated symptom of psychotic disorders is anosognosia, which refers to a lack of insight, or awareness of experiencing symptoms. Of the approximately 11 million people with SMI in the U.S., an estimated 50% to 75% experience some degree of anosognosia and don’t believe they are unwell, which understandably leads to treatment refusal [12]. In fact, this is the single most common reason for treatment refusal or non-adherence among this population [13]. Research by Dr. Xavier Amador, an internationally renowned clinical psychologist specializing in schizophrenia and bipolar disorder, and author of I Am Not Sick, I Don’t Need Help!, shows anosognosia is not simply denial or defensiveness, but a biological symptom caused by a dysfunction of various brain structures, occurring as part of the illness itself [14].
The combination of all these factors - anosognosia, treatment refusal, and a progressive brain disease, met by legal barriers to treatment - has had catastrophic impacts for individuals, families, and communities.
Across the U.S., people with SMI face horrific outcomes. Often revolving-door patients in hospitals, they are overrepresented in rates of homelessness and incarceration by about 10 times, with prisons acting as our country’s largest psychiatric facilities [15], [16], [17], [18]. They experience suicide rates a devastating 20 times higher than the general population and are 16 times more likely to be killed by police [19], [20]. Our approach to mental healthcare has quite literally been to neglect, punish, kill, and traumatize the most unwell.
California’s CARE Act is finally doing something about this.
Signed into law by Governor Gavin Newsom in September 2022, the CARE Act gives long overdue attention to anosognosia, within the framework of assisted outpatient treatment (AOT). Most well-known for its CARE Court component, this new law allows family members and certain mental health professionals to petition for someone with schizophrenia spectrum or other psychotic disorders to receive a court-ordered, outpatient ‘CARE plan,’ provided they meet eligibility criteria. CARE plans may be assigned for up to 24 months, and may include medication, psychosocial services, or supportive housing, if needed, with a goal of preventing more restrictive outcomes like incarceration or hospitalization [21].
Importantly, the CARE Act also holds county-based agencies accountable for remaining engaged with this population, removing the option of turning someone away because their condition is deemed ‘too complex.’ To date, the act has been implemented in eight California counties, and will be implemented across the entire state by December 2024 [22], [23].
The CARE Act has been widely supported by families of those with SMI [24], [25], and applauded by leading mental health advocacy organizations, like the Treatment Advocacy Center [26] and the National Alliance on Mental Illness (NAMI), who praise it as a “crucial step forward [27]” in connecting this population to urgently-needed care. But it has also been strongly opposed by some civil rights groups, mostly on Newsom’s own political left. Disability Rights California (DRC) and the ACLU have been among the most vocal opponents, arguing the act violates a person’s fundamental rights, with the DRC having unsuccessfully filed a lawsuit with the California Supreme Court in an attempt to block the act [28].
Instead, these groups insist on voluntary treatment only. But their black-and-white ‘civil liberties’ argument ignores a crucial reality: that when someone with SMI loses their ability to work, to live independently, to maintain relationships, or achieve their potential, if they’re repeatedly attempting suicide, incarcerated, homeless, or screaming on the street, it’s not because they’ve simply exercised their “fundamental right” to do these things. It’s because their devastating illness, characterized by loss of contact with reality, has destroyed any real ability to choose otherwise. The neglectful idea that we shouldn’t intervene is exactly how we’ve reached the crisis we’re in now.
Psychotic disorders are heavily stigmatized and widely misunderstood, and language used by the DRC and ACLU suggests that they, too, may not truly understand these illnesses. With public statements that unbelievably fail to even mention the words psychosis, schizophrenia, or anosognosia, they instead lump all classes of mental illness and homelessness together as one issue, framing the act as targeting anyone within these broad, diverse groups [29], [30]. This is inaccurate, for several reasons.
SMI and homelessness are not synonymous, despite their overlap. Contrary to how these groups represent it, the CARE Act is for a narrowly-defined population with specific diagnoses who do not necessarily need to be unhoused. It is for cases where voluntary treatment is not a feasible option, and where without treatment, the person is unable to live safely and independently, or their deteriorating condition makes this likely in the future [31]. Importantly, medication cannot be forcibly administered, despite misinformation from the ACLU [32], [33]. The program is also not an intended solution to homelessness; it is a last-resort option for the most seriously unwell.
Opposition to the CARE Act is not surprising, since organizations like the ACLU have long opposed other states’ AOT laws. Almost all states - with the exceptions of Connecticut, Maryland, and Massachusetts - have some form of AOT legislation, and research shows that when properly designed and implemented, they can dramatically enhance quality of life for participants [34], [35]. AOT has consistently been linked to improved treatment engagement, and significantly reduced rates of rehospitalization, homelessness, violence, and involvement with the criminal justice system [36]. A 2018 national survey also found that an overwhelming 92% of AOT participants reported positive experiences with their programs [37].
Invoking a civil rights argument to oppose programs that can so greatly help their target population avoid the most dehumanizing outcomes just doesn’t make sense. As both a former board member of the British Columbia Civil Liberties Association, and a father to a child with schizophrenia, Herschel Hardin put it simply in his 1993 essay, Uncivil Liberties:
How can such degradation and death – so much inhumanity – be justified in the name of civil liberties? It cannot. Far from respecting civil liberties, legal obstacles to treating the mentally ill limit or destroy the liberty of the person [38].
The refusal of social justice groups to listen to the countless families who have spoken out about this issue, whose lives have been turned upside down by it, is an ironic contradiction of the concept of social justice.
Opponents rightly call for increased funding for community mental health services, and this is absolutely needed, given the critically under-resourced system we have now. They also argue the CARE Act will disproportionately harm communities of color. This is a crucial discussion to be had, particularly as Black Americans are more likely than whites to be misdiagnosed with schizophrenia in a healthcare system that has historically inflicted severe race-based harm and is still plagued with unacceptable biases [39], [40], [41]. And although intersectional data on race and SMI in rates of incarceration, homelessness, and fatal police encounters is limited, the racial disparities in these outcomes among the general population are well-documented.
These inequities need to be addressed, without question, and there are many approaches that could help achieve that. But neglecting the most seriously unwell should not be one of them. The system needs to take responsibility and do better, both when it comes to racism and severe mental illness.
The CARE Act aims to do both, as part of California’s multifaceted efforts to expand services, reduce disparities, and improve the system overall [42].
The act mandates racial justice experts, disability rights groups, and those with lived experience are involved at every stage of implementation and that independent equity assessments are conducted regularly to watch for any demographic disparities. This will guide disparity-reduction efforts, if needed, and all data will be made publicly available. The legislation also emphasizes a trauma-informed approach and cultural sensitivity at every stage, while its narrow eligibility criteria are designed to vet against inaccurate diagnoses [43]. These are all positive early signs this new law is on the right track.
Amid valid concerns about funding, the CARE Act comes alongside the Newsom Administration’s already unprecedented investments in California’s mental health infrastructure [44], and the recent passage of Proposition 1, which provides funding for an historic transformation of the 2004 Mental Health Services Act. This multi-year, multi-billion dollar investment will expand services and supportive housing, increase transparency and accountability, and grow the mental health workforce [45]; all of which will support the improved outcomes the CARE Act aims to achieve.
Complex issues are rarely fixed by one policy alone, and system-wide reforms are needed to truly meet the needs of this population. But one thing is clear: our hands-off approach to SMI has been a disaster. While in practice, the reach of the CARE Act will be relatively small, and its success will depend greatly on its implementation, this legislation represents long overdue, meaningful progress and validation given to this crisis. Voluntary treatment for all is a nice ideal, but it’s just not reality for this population. And in the meantime, real people are dying, and families are deeply traumatized watching their loved ones become transformed by illnesses that are relentless and cruel, and feeling helpless because they are not equipped to manage mental health crises on their own. Lisa says,
Until the system is fixed, until services stop putting the burden of care on individuals and stepping away because they state 'the person does not want to engage,’ and until mental health professionals and governing bodies understand that this crisis will not disappear by handing out phone numbers, tragically more lives will be lost and impacted, and more families will be asking ‘how could this happen?’
For James, and too many others who have lost their lives to severe mental illness, the CARE Act could have been a lifeline. Before loudly making blanket statements about civil liberties and obstructing meaningful progress, social justice groups must have the humility to listen to what people impacted by this issue - the true experts - are telling them.
References
[1] Earley, P. (2007). Crazy: A father’s search through mental health madness. Berkley. Penguin Random House LLC.
[2] Earley, P. (2023). Parents successfully sue hospital after son’s suicide: Doctors agree to listen and not hide behind HIPAA. Official Website of Pete Earley. https://www.peteearley.com/2023/12/15/parents-successfully-sue-hospital-after-sons-suicide-doctors-agree-to-listen-not-hide-behind-hipaa/
[3] Ellison, J., & Pardo, D. (2022) Moms make a case for CARE court. Spectrum News 1.
https://spectrumnews1.com/ca/la-west/inside-the-issues/2022/08/02/moms-make-a-case-for-care-court-#
[4] Dailey, L., Gray, M., Johnson, B., Muhammad, S., Sinclair, E., & Stettin, B. (2023). Grading the states: An analysis of U.S. psychiatric treatment laws. Treatment Advocacy Center. https://www.treatmentadvocacycenter.org/wp-content/uploads/2023/10/grading-the-states.pdf
[5] O'Connor v. Donaldson, 422 U.S. 563. (1975). United States Supreme Court. https://supreme.justia.com/cases/federal/us/422/563/
[6] Earley, P. (2007). Crazy: A father’s search through mental health madness. Berkley. Penguin Random House LLC.
[7] Center for Disease Control and Prevention (CDC). (2022). Health insurance portability and accountability act of 1996 (HIPAA). https://www.cdc.gov/phlp/publications/topic/hipaa.html
[8] Earley, P. (2023). Parents successfully sue hospital after son’s suicide: Doctors agree to listen and not hide behind HIPAA. Official Website of Pete Earley. https://www.peteearley.com/2023/12/15/parents-successfully-sue-hospital-after-sons-suicide-doctors-agree-to-listen-not-hide-behind-hipaa/
[9] Sharko, M., Jameson, R., Ancker, J., Krams, L., Webber, E., & Rosenbloom, T. (2022). State-by-state variability in adolescent privacy laws. Pediatrics, 149 (6). https://doi.org/10.1542/peds.2021-053458
[10] Simmons-Ritchie, D. (2015). ‘HIPAA handcuffs,’ costs of incarceration and more from PennLive’s mental health Q&A. PennLive. https://www.pennlive.com/midstate/2015/10/q_and_a_with_dj_jaffe_mental_h.html
[11] Amador, X. (2007). I am not sick, I don’t need help! 2nd Edition. Vida Press.
[12] Ibid.
[13] Silver, S., & Sinclair Hancq, E. (TAC). (2023). Anosognosia. Treatment Advocacy Center Office of Research and Public Affairs. https://www.treatmentadvocacycenter.org/reports_publications/anosognosia/
[14] Ibid.
[15] Saldua, M. (2023). Addressing social determinants of health among individuals experiencing homelessness. Substance Abuse and Mental Health Services Administration (SAMHSA). https://www.samhsa.gov/blog/addressing-social-determinants-health-among-individuals-experiencing-homelessness
[16] Streeter, J. L. (2022). Homelessness in California: Causes and policy considerations. Stanford Institute for Economic Policy Research (SIEPR). https://siepr.stanford.edu/publications/policy-brief/homelessness-california-causes-and-policy-considerations
[17] Treatment Advocacy Center. (2016). Serious mental illness (SMI) prevalence in jails and prisons. Office of Research and Public Affairs. Treatment Advocacy Center. https://www.treatmentadvocacycenter.org/reports_publications/serious-mental-illness-prevalence-in-jails-and-prisons/
[18] Steinberg, D., Mills, D., Romano, M. (2015). When did prisons become acceptable mental healthcare facilities? Stanford Law School Three Strikes Project. https://law.stanford.edu/index.php?webauth-document=child-page/632655/doc/slspublic/Report_v12.pdf
[19] Centre for Addiction and Mental Health (CAMH). (2020). Suicide rate for people with schizophrenia spectrum disorders over 20 times higher than the general population. https://www.camh.ca/en/camh-news-and-stories/suicide-rate-for-people-with-schizophrenia-spectrum-disorders
[20] Fuller, D. A., Lamb, R. H., Biasotti, M., Snook, J. (2015). Overlooked in the undercounted. The role of mental illness in fatal law enforcement encounters. Treatment Advocacy Center. https://www.treatmentadvocacycenter.org/storage/documents/overlooked-in-the-undercounted.pdf
[21] SB 1338, Community Assistance, Recovery, and Empowerment (CARE) Act. (2021-2022). https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220SB1338
[22] Ibid.
[23] California Health & Human Services Agency [CalHHS]. (2024). CARE Act. Quarterly Implementation Update March 2024. https://www.chhs.ca.gov/wp-content/uploads/2024/04/CARE-Act-Quarterly-Update-March-2024-FINAL.pdf
[24] Bollag, S. (2023). As counties set up new mental health courts, people with mental illness face a broken system. San Francisco Chronicle. https://www.sfchronicle.com/politics/article/care-court-california-17781933.php
[25] Ellison, J., & Pardo, D. (2022) Moms make a case for CARE court. Spectrum News 1.
https://spectrumnews1.com/ca/la-west/inside-the-issues/2022/08/02/moms-make-a-case-for-care-court-#
[26] Treatment Advocacy Center (TAC). (2023). Treatment advocacy center’s statement on the passage of SB-1338, California’s CARE Court bill. https://www.treatmentadvocacycenter.org/about-us/features-and-news/4548-treatment-advocacy-centers-statement-on-the-passage-of-sb-1338-californias-care-court-bill
[27] National Institute on Mental Illness (NAMI). (2023). CARE Act. https://namica.org/care/
[28] Disability Rights California (DRC). (2023). DRC v. Newsom. Disability Rights California. https://www.disabilityrightsca.org/cases/drc-v-newsom
[29] Garrow, E., & Rogers, K. (2022). Why we vehemently oppose the governor’s “care court”
proposal - and so should you. ACLU California Action. https://aclucalaction.org/2022/06/why-oppose-care-court/
[30] Disability Rights California (DRC). (2022). Open letter to Governor Newsom: We do not need CARE Court. https://www.disabilityrightsca.org/latest-news/open-letter-to-governor-newsom-we-do-not-need-care-court-sb-1338
[31] Judicial Council of California (JCC). (2023). CARE Act eligibility criteria transcript. https://www.courts.ca.gov/documents/CARE-Act-Eligibility-Criteria-Transcript.pdf
[32] Garrow, E., & Rogers, K. (2022). Why we vehemently oppose the governor’s “care court”
proposal - and so should you. ACLU California Action. https://aclucalaction.org/2022/06/why-oppose-care-court/
[33] SB 1338, Community Assistance, Recovery, and Empowerment (CARE) Act. https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220SB1338
[34] Dailey, L., Gray, M., Johnson, B., Muhammad, S., Sinclair, E., & Stettin, B. (2023). Grading the states: An analysis of U.S. psychiatric treatment laws. Treatment Advocacy Center. https://www.treatmentadvocacycenter.org/wp-content/uploads/2023/10/grading-the-states.pdf
[35] Treatment Advocacy Center. (2021). Assisted outpatient treatment: Improving outcomes and saving money. Office of Research and Public Affairs. Treatment Advocacy Center. https://www.treatmentadvocacycenter.org/wp-content/uploads/2023/10/TAC-AOT-Research-Summary-1.pdf
[36] Ibid.
[37] Ibid.
[38] Hardin, H. (1993). Uncivil liberties. The Vancouver Sun. https://mentalillnesspolicy.org/media/bestmedia/uncivilliberties.html
[39] Faber, S. C., Khanna Roy, A., Michaels, T. I., & Williams, M. T. (2023). The weaponization of medicine: Early psychosis in the Black community and the need for racially informed mental healthcare. Frontiers in psychiatry, 14, 1098292. https://doi.org/10.3389/fpsyt.2023.1098292
[40] Moran, M. (2014). Overdiagnosis of schizophrenia said to be persistent among black patients. Psychiatry News. https://doi.org/10.1176/appi.pn.2015.1a17
[41] Gara, M. A., Minsky, S., Silverstein, S. M., Miskimen, T., & Strakowski, S. M. (2018). A naturalistic study of racial disparities in diagnoses at an outpatient behavioral health clinic. Psychiatric Services, 70 (2), February, 2019. https://doi.org/10.1176/appi.ps.201800223
[42] State of California. (2023). California’s mental health movement. State of California. https://www.gov.ca.gov/wp-content/uploads/2023/10/Mental-Health-Glossy-Plan_10.11.23-530-PM.pdf
[43] SB 1338, Community Assistance, Recovery, and Empowerment (CARE) Act. https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220SB1338
[44] State of California. (2023). California’s mental health movement. State of California. https://www.gov.ca.gov/wp-content/uploads/2023/10/Mental-Health-Glossy-Plan_10.11.23-530-PM.pdf
[45] California Health and Human Services Agency (CalHHS). (2023). Governor Newsom’s transformation of mental health services. https://www.chhs.ca.gov/wp-content/uploads/2023/09/FINAL-BHSA-Fact-Sheet-_SEP23.pdf