Recorded on March 18, 2024, this panel focused on Professor Alex V. Barnard’s book, Conservatorship: Inside California’s System of Coercion and Care for Mental Illness. The book analyzes conservatorship, a legal system used to take legal guardianship over individuals deemed unable to meet their own basic needs. This controversial system, which has come under fire from civil liberties and disability rights groups, is at the center of state policies for mental illness, homelessness, and addiction. Through interviews with policy makers, professionals, families, and conservatees, Barnard shows how the system operates, and its many shortcomings.
At this event — part of the Social Science Matrix California Spotlight series — Professor Barnard was joined by Lauren Rettagliata, whose comments on her lived experience of the system complement Barnard’s discussion of his research. The discussion was moderated by Jonathan Simon, Lance Robbins Professor of Criminal Justice Law at Berkeley Law.
The panel was co-sponsored by the UC Berkeley Institute for the Study of Societal Issues (ISSI), Department of Sociology, and the Center for the Study of Law and Society.
About the Speakers
Alex V. Barnard is an assistant professor of sociology at NYU, holding a PhD in sociology from UC Berkeley. His work examines cross-national differences in the trajectory of people with severe mental illness between different institutions of care and control. His book, Conservatorship: Inside California’s System of Coercion and Care for Mental Illness was published by Columbia University Press in 2023. He is currently working on another book, tentatively titled, Mental States: Ordering Psychiatric Disorder in France.
Lauren Rettagliata is the mom of four sons, the oldest has Autism, the youngest has Schizophrenia. Almost five decades ago, she worked on committees that formulated federal legislation that ensconced into federal law protection for a free appropriate education for all children. Lauren found herself back home in California at the time her youngest son was diagnosed with Schizophrenia. The world changed for her. She had to search the streets and delta for her son who spent many years homeless and fell into drug addiction. Her son has been conserved. Lauren’s advocacy now centers around Housing That Heals.
Moderator
Jonathan Simon joined the Berkeley Law faculty in 2003 as part of the J.D., JSP, and Legal Studies programs. He teaches in the areas of criminal law, criminal procedure, criminology, legal studies and the sociology of law. Simon’s scholarship concerns the role of crime and criminal justice in governing contemporary societies, risk and the law, and the history of the interdisciplinary study of law. His published works include over seventy articles and book chapters, and three single authored monographs, including: Poor Discipline: Parole and the Social Control of the Underclass (University of Chicago 1993, winner of the American Sociological Association’s sociology of law book prize, 1994), Governing through Crime: How the War on Crime Transformed American Democracy and Created a Culture of Fear (Oxford University Press 2007, winner of the American Society of Criminology, Hindelang Award 2010) and Mass Incarceration on Trial: A Remarkable Court Decision and the Future of Prisons in America (New Press 2014).
Podcast and Transcript
Listen to this event below, or on Google Podcasts or Apple Podcasts.
[WOMAN’S VOICE] The Matrix Podcast is a presentation of Social Science Matrix, an interdisciplinary reserach center at the University of California, Berkeley.
[JULIA SIZEK] My name is Julia Sizek, and I am the postdoc here at the Social Science Matrix. And today, we are extremely excited for this important event that is about a topic that is very politically relevant in California. As we were discussing right before we started, the votes on Prop 1 are counting, which is, of course, an issue relevant to the system of conservatorship, which is what we’re here to discuss today.
So you likely already know a little bit about the system of conservatorship. A legal infrastructure and medical system that has developed in order to take care of people that have been deemed to be gravely disabled. Conservatorship is a very head end system, and it rarely makes the news aside from Britney Spears, who is a very famous case.
But it’s a system that is both very important and very hidden, one that our guests today Alex Barnard, knows very well. And Dr. Barnard is a graduate of the sociology department here, so we are especially happy to welcome him back to say hello. This event is part of our California Spotlight Series which addresses topics of interest to residents of the Golden State.
So we also do have some other upcoming events here at Matrix, some of which might be of interest to those of you who are attending this event for various reasons. So tomorrow which is March 19, we will be having an event with Nick Romeo called The Alternative, How To Build A Just Economy.
On Wednesday, we will be having an event called New Directions in Greening Infrastructure about the energy transition. On April 1, which will be after spring break, which is next week, we will be having an event on a book called Nature-Made Economy, COD, Capital and the Great Economization of the Ocean. On April 4, another book event on The Gender of Capital.
And then once we approach the end of the semester, we’ll be having some events on Caste, Education, and Social Struggle in Modern India, as well as a book event on Puta Life, Seeing Latinas, Working Sex by Berkeley professor Juana Maria Rodriguez. And you can, of course, find our other events on our website, which is matrix.berkeley.edu.
And then just before I introduce our moderator today, just a note for the folks who are online. If you want to ask a question during the event, please put it in the Q&A box. And if you’re having some sort of technical issue and you aren’t able to hear someone or you’re having some sort of problem like that, put it in the chat and we will get back to you as soon as we can.
Yes. OK. So now I will introduce Jonathan Simon who will be moderating today for us. He joined the Berkeley Law faculty in 2003 as part of the JD/JSP and legal studies programs. He teaches in the areas of criminal law, criminal procedure, criminology, legal studies, and the sociology of law.
His scholarship concerns the role of crime and criminal justice in governing contemporary societies risk and the law in the history of the interdisciplinary study of law. His published works include over 70 articles and book chapters and three monographs, which I will list here– poor discipline, parole in the social control of the underclass, governing through crime, how the war on crime transformed American democracy and created a culture of fear, and finally, mass incarceration on trial, a remarkable court decision in the future of prisons in America. And so without any further ado, I will turn it over to Jonathan.
[JONATHAN SIMON] Thanks so much, Julia. And let me extend my welcome as well to the Matrix? Audience here in the building, as well as to our audience online. I hope I’m coming through clearly enough, if I’m not, Julia will certainly signal me and I’ll try to improve it. I’m very excited by this conversation.
There are a few topics that have animated as many of us in California for as long as this one, and we have a terrific panel to educate us today. So I want to get to them very quickly. But let me start by saying this. A little more than 20 years now of teaching legal studies here at Berkeley, I’ve never ceased to be amazed at how much Americans in general and I think Californians maybe in particular love law, and especially law in the books.
And how convinced we are that if you get law right, everything will follow. That you want to change society, you need to change the law. And so we can just look at our history, whether it’s prohibition or more recent wars on drugs, segregating society or desegregating society, creating a legal right to abortion or ending Roe as we know it, have all been demands made by people who fervently believed that we would live in a better world if we could change what the law is on the books.
And if you think about it, there are few areas in, certainly, recent history where I think– few areas of public interest and public policy that have drawn quite as much of this, you might say, mythical belief in the power of law to do either good or evil than the issues around civil commitment, conservatorship that we are addressing today.
Many of you know that in 1969, California was one of the leading, maybe the leading, state to pass a landmark law revising how the state exercises its truly awesome sovereign power to civilly commit people to coerce them sometimes into custody or into treatment or into some combinations thereof.
And that law is distributed by various people as having transformed California society in many, many ways. And ever since that– over 50 years ago, now 55, we have passed numerous laws. If you think that we don’t have enough laws in this area, first of all, I urge you to read the book and talk to Lauren, and I’m going to introduce them properly in a moment.
But one of the things that makes it so interesting to me is that not only do we really care about this law and the related laws, but today we attribute many of our most persistent evils in our state to having gotten this law either wrong or not right enough. And that includes unhousedness. That includes rampant public drug use and drug sales in the center of many of our large cities. It includes mass incarceration.
That motivated me to write an article on this and opine on how we could solve these problems, as well as seemingly more mundane problems like automobile break ins, property crimes, retail theft, et cetera. So in a way, changing the law of conservatorship civil commitment has the glow of a panacea to many today who think that we could get it right.
Now, I’ve spent much of my career trying to show Berkeley undergraduates for the most part that story about law on the books is at best a myth, and that it’s really the law and the action that matters. And there’s a lot that goes with that. One message is, whether you won or lost the battle over law on the books, things are just beginning because we really don’t know what that law on the books is going to do, and reversing it, how it’s going to do as well.
Notwithstanding that background knowledge and the experience I should have had. As I said, I wrote my own law review article on this topic arguing that mass incarceration was such a horrible evil that we ought to delve back into the law and try to get the balance right between freedom and coercion in the form of prison.
And again, I would say having now read Alex’s book more carefully and listening to more survivors and their family members, that there was a huge amount of naivete to think that we could just give judges clearer guidelines or even fancy terms like dignity or values like dignity and expect chains to follow in any kind of automatic way.
So in my experience, if you want to break out of the enormous power that myths, rational myths– since we’re in a sociology related adjacent space, we might describe them as especially the myth of legality that changing the law on the books is the key to changing society, there’s only two ways to get away from those myths in my experience.
One is by deep empirical research that forces you to overcome your assumptions and the assumptions of the people that encouraged you to go out in the field, and living and experiencing the dilemmas of this system directly through your loved ones and through your own struggle to foster their lives and well-being.
And we are very privileged today to have two people who can speak exactly to those sources of knowledge, and I’m going to introduce them in the order that they’re going to speak. Alex Barnard on my far left here is an assistant professor of sociology at NYU. As you noted, Julia, he holds a PhD in sociology from the University of California, Berkeley.
His work examines cross-national differences in the trajectory of people with severe mental illness between different institutions of care and control. His book– this is it, Conservatorship Inside California’s System of Coercion and Care for Mental Illness, was published by Columbia University press in 2023.
He is currently working on another book tentatively titled Mental States Ordering Psychiatric Disorder In France. And I’ll note that he had done a lot of research in France when he wrote this book, so it’s already informed in many ways by a cross-cultural knowledge that most of us ignore or don’t have.
To my immediate left is Lauren– I’m sorry, my notes here just give you a first name, but I know you’ve got a–
That’s OK.
–last name as well, and I will get to that in a moment. Here we go. Lauren is the mom of four sons. The oldest has autism. The youngest has schizophrenia. Almost five decades ago, coincidentally, she worked on committees that formulated some of the first federal legislation that ensconced laws protecting a right to free and appropriate education for all children.
Lauren found herself back home in California at the time her youngest son was diagnosed with schizophrenia. The world changed for her. She had to search the streets and delta for her son who spent many years homeless and fell into drug addiction. Her son has been conserved. Laura’s advocacy now centers around housing that heals, and we’ll hear more about that.
So Alex and Lauren are each going to speak for about 15 minutes or so, then I will moderate a Q&A with all of you and with our online audience. So without further ado, please join me in welcoming these experts, true experts, here to the Matrix.
[APPLAUSE]
[ALEX BARNARD] Thank you so much for taking some time out of your day to be here. I’d like to thank the Social Science Matrix for the invitation, and especially my past and perhaps forever advisor Marion Fourcade for organizing this event. It’s really special to share the stage with Lauren who is a really instrumental support early on in this project.
And as that kind introduction just noted, perhaps I’m an expert, but I’m an expert only because of the hundreds of people who have shared their expertise and their experiences and in many cases, their pain and their struggles with me. So my work on this topic began when I was a PhD student here conducting a comparative study on decision making in public mental health in France and the US.
And towards the end of my PhD, I began hearing about proposals across the Bay in San Francisco to use conservatorship and ordinarily obscure medical legal intervention to address some of the combination of urban suffering, urban disorder, and addiction that I could see every day on my bike to campus.
Yet, I quickly realized there was almost no academic research or government oversight into what was happening to people already on conservatorship. And so with an intrepid group of undergraduate research apprentices here at Berkeley, we sought out to provide some of that analysis.
My core argument in the book is that as a result of what I call the state’s abdication of authority, California’s mental health system is producing both an excess of coercion that offers neither the social control that is being demanded by the public or politicians, nor the transformative care that some of the state’s most vulnerable citizens ought to receive.
And concision is not my strong point. [? Keris ?] [? Myrick ?] recently described my book not really as a book but a tome, but I will try and give you a brief version of it through telling one story, the story of Serge [? Obolensky ?] who I first interviewed in 2021 and I’ve had the pleasure of getting to in the last few years.
So you used to be able to search for no hands, crazy, and Hollywood on YouTube and find him. In one video that seems too Hollywood to be true, the camera person is focused on an LAPD officer who is laying out a spike trap in the road to put an end to a car chase in progress. And the video pans over to a man with no hands, a grizzled beard, and caked in dirty hair. He’s shouting at the sky and clapping his two wrists together.
These videos capture Serge’s external behavior but not his internal suffering. And when I interviewed him in 2021, he didn’t give me a lot of details about his background but says that he suffered an accident with a firecracker in his late teens he lost both his hands and one eye. His parents were scientologists and adamantly opposed to psychiatric treatment, even though he showed signs of developing psychosis. He was evicted from his apartment in 2001 and spent more than a decade homeless in Hollywood.
So he describes it, it was very hard, very painful. “I didn’t have shoes. My hair was dirty. I was hungry all the time. I was freezing cold at night, and I didn’t have a blanket or anything. It was really bad.” Serge was on the verge of becoming part of a shocking and shameful statistic, a massive rise of homeless mortality in the state that has grown much faster than the homeless population itself, as you can see from the chart.
Los Angeles went from 500 homeless deaths in 2014 to over 2,000 last year. While some of this is a consequence of the rise of new and lethal substances, it also reflects an aging unhoused population. The years and years that people like Serge have spent on the street accumulates into both increased vulnerability and increased skepticism of the health and social service interventions that are supposed to help them.
So everyone who has lived in an urban area of California has seen Serge or someone like them and asked the question, why isn’t somebody doing something to help him? Some people wonder why Serge wasn’t being offered housing through programs like Housing First. While others ask, why is it that California’s laws make it so hard to force someone like Serge into treatment?
Yet Serge was not being left alone in some kind of homeless state of nature. In fact, one of the things that Serge remembers most clearly from that period is many, many 5150s. A 5150 refers to the part of California’s Welfare and Institutions Code that allows a police officer or designated clinician to deem somebody a danger to self, danger to others, or gravely disabled, which means unable to meet their need for food, clothing, or shelter as a result of mental illness and transport them to an ER evaluation. 5150 is also the title of a Van Halen album and a Machine Gun Kelly song. Now you know.
In Serge’s case, the voices in his head would tell him to run into traffic, and police would pick him up and take him to a hospital. Sometimes the voices would tell him to trespass and he’d be arrested instead. Serge’s case speaks to a neglected truth. What we often hear that California’s laws are particularly strict, if we look at the rate of these 72 hour holds, California actually has a very high rate of short term involuntary treatment. And if we look at 14-day commitments, somewhat longer 14-day commitments, California sits in the middle of many European countries.
What Serge did not experience during his years on the street was a conservatorship. So a conservatorship, also known as a guardianship, is a legal measure by which a judge grants a third party the power to place somebody in a facility, including a locked one, or two them to receive treatment and control their finances and personal decisions.
Serge was always released by an ER within 48 hours. A clinician declared that Serge was meeting his need for food because people in the neighborhood would occasionally buy him a meal. He met his requirement for shelter because he knew to sleep in a doorway when it was raining. Sometimes if he had been transported to a hospital in another neighborhood, they’d even provide him a taxi back to Hollywood. A few times, he said the discharge social worker tried to connect him to a shelter, but he didn’t go.
This outcome is not surprising. Despite the state’s rate of high rate of short term involuntary interventions, the number of people receiving long term interventions versus via somewhat misleadingly named permanent conservatorship, which lasts one year, has gone down. Again, this isn’t because civil rights laws, which have been largely the same since 1967 are getting stricter, nor is it because the treatment system is doing a better job of stabilizing and healing people.
I think it would be remiss if I didn’t say, this system that is producing proliferating short term involuntary interventions has extreme racial disparities built into it. So this is data that was put together by San Francisco. It’s looking at the number of people in the city in fiscal year 2021 who had eight or more 5150s in one year. And you can see in that population, 50% of the people subjected to that were Black or African-American. San Francisco as a reminder is now 5% Black.
Kerry Morrison realized that there was another explanation for the mixture of abandonment and short and pointless coercion that Serge was facing. She was head of the Hollywood business? Improvement District, an organization that some scholars have roundly critiqued for advocating the criminalization of unsightly homeless individuals.
But Morrison did much more than demand the police arrest or 5150 Serge. After all, Serge was already being regularly detained. What Morrison realized was that there was no accountability for ensuring that these detentions actually accomplished anything. She was getting at something akin to my conclusion in the book.
Although California’s landmark 1967 law, the Lanterman-Petris-Short Act granted the state the power to adopt any rules, regulations, and standards as necessary to implement it, the state has largely abdicated that authority. It provides no guidelines as to the goal of the conservatorship system nor best practices for how legal criteria like grave disability should be operationalized, nor serious oversight of the locked facilities where many conservatees wind up.
The state’s own power has been dispersed among a fragmented field of public and private actors that are using or opting not to use that power in keeping with their particular bureaucratic imperatives or funding constraints. As a result, you’ll see getting someone care in California looks like, as one mom told me, the result of luck and heroics rather than a functioning system.
In Serge’s case, Kerry decided to step in. She concluded that Serge and others like him were missing an air traffic controller to ensure that they actually progressed through the system rather than simply cycled in and out of it. So she in a group of local nonprofits and charities mapped out on a whiteboard everything they knew about the Hollywood top 14, the individuals in the neighborhood they identified as the most vulnerable and most likely to die if left on the streets.
They were the ones who combined information from homelessness, law enforcement, and mental health agencies that ordinarily ignored one another. They assembled all this information into a dossier and hatched a plan. The group would wait for a day when a particularly sympathetic doctor was on call at the local hospital. During that physician’s shift, the bid’s foot patrol would watch for Serge to run into traffic and call LAPD.
Meanwhile, someone from the Hollywood top 14 team would camp out in the ER so that before Serge was released by the ER, they would show the doctor the dossier and say if you let him go, this has been the pattern and he’s vulnerable. Everything worked like clockwork, she told me, and that did not make for a less tragic scene.
She tells me the police had to handcuff him, but he doesn’t have hands. So they use zip ties and he was kneeling on the ground. There’s all sorts of law enforcement all around him. When Morrison talks about her work, she says, this is how we help people in America.
Importantly, the team arranged for Serge to be taken to a county hospital, and this is an important point and offers a moment to talk about a theme that politicians like Gavin Newsom have really hammered on in recent months, which is California’s desperate lack of treatment beds.
My research documents a warzone like triaging of scarce beds by which families, clinicians, and first responders scramble to get extremely sick people into facilities. I want you to watch a discharge social worker plead for a miracle that would convince a hospital to keep a homeless pregnant woman with schizophrenia one night.
Given this, it might surprise you that from a comparative perspective, California is not noticeably underequipped. If we look at all locked mental health facilities in the state, California sits between Australia and Denmark with more than the UK, Canada, or Sweden.
What creates this shortfall is first California’s immense need. The combination of the nation’s highest real poverty rate, half the county’s unsheltered homeless, waves of austerity in the mental health system, and not just under Ronald Reagan, and mass incarceration have created vulnerable people like Serge who essentially do not exist in many European countries.
Moreover, California’s locked beds are used badly. California has the fourth largest state run hospital system by capita, but most of those beds are used for people found incompetent to stand trial treated just enough so they can be judged and punished. And as a harrowing recent report by disability rights California found, many people in locked facilities in the state linger there for months or years after being cleared for discharge because the private residential treatment providers the state relies on won’t take people with comorbid medical needs, substance abuse challenges, or history of violence.
Most of California’s acute care psychiatric hospitals are privately run in for profit. As you can see from the yellow bars, half of the state’s beds authorized to take involuntary patients are in such facilities. But private facilities are not engaged in any project of Foucauldian social control. Instead, they keep people as long as insurance is paying and discharge them when it stops. In LA, private hospitals have an astonishing readmission rate of 37% within 30 days.
Serge, however, was brought to a county hospital. Public facilities like these are more willing to eat the costs of holding somebody for a long period while waiting for a conservatorship. And you can see that in the brown bars on the right showing the proportion of conservatorship referrals coming from different types of facilities. This does not say anything about the quality of care being offered.
So in Serge’s case, the dossier passed through an ER up to the inpatient unit where after waiting a requisite 17 days, the doctor applied for a conservatorship. That dossier was then evaluated by a County agency, the public guardian, and referred for a hearing.
Now, in theory, conservatorship hearings are a point where law and medicine, where rights and care collide in a delicate balancing act. But Serge doesn’t remember his public defender fighting for him or even that he spoke to the judge. He just remembers the doctor testified that he couldn’t take care of himself and it made him upset. Serge was placed on a conservatorship.
So what does it mean to be conserved? Popular culture like the Netflix movie I Care a Lot and Britney Spears case have painted a picture of a guardianship industry riven with active exploitation. But people with mental illness rarely have the kind of assets that would attract an unscrupulous private conservator.
Serge was thus the charge of an obscure county agency, the public guardian. Depictions of public guardians also emphasize, as one 1972 profile put it, that they have total power to decide when they’ll see the sunshine again. In practice though, public guardians have caseloads that range from 60 to 100 people and a limited budget consisting primarily of their wards social security checks. Far from having overbearing parents, conservatives often seem like latchkey kids.
One public guardian reflecting on the public’s increased desire to see more people conserved lamented to me, they think it’s a magic wand. Oh, let’s get them conserved, and then everything will be solved. But we only have two powers, placement and medication, and we have no placement budget.
So in Serge’s case, the court ordered the public guardian to place Serge in a long term care facility. But hospitals and guardians have little leverage over these facilities whose beds are scarce and for which counties have to compete. So Serge was stuck for months on inpatient until one day Kerri went to visit him and he was gone.
The hospital wouldn’t tell Kerry where he was citing privacy laws. Kerry raged. Our system does not want to even acknowledge that there might be someone out there who cares, who might be the lifeline, the connector could provide people with $5 or whatever. When we were speaking with Kerry and Serge, Kerry reflected, if we did not go looking for you, nobody in the world would have known where you were. You would have been completely alone.
Kerry eventually tracked Serge to a locked facility on the outskirts of LA. These Mental Health Rehabilitation Centers, MHRCs, are inauspicious places. At the facility I visited, which is not the one pictured, you have to look carefully at the vine covered fence around an exercise area out back to realize that it’s topped with barbed wire. The facility was eerily quiet.
It has no staff psychiatrist. It contracts for physicians to meet each resident once every two weeks. There are no licensed psychologists providing one on one psychotherapy. Most of the activities are groups on anger management or living skills put on by program counselors who the manager told me were uncertified people who would otherwise be working in McDonald’s.
While I was touring, a woman came up to me to show me poetry she was writing with titles like “Locked In” and “My Incarceration”. At that moment, I felt like crying. I had been hearing about the desperate need for more MHRC beds and seeing that need. But when I finally saw them, I realized we were clamoring for people to shuffle empty hallways in silence for months or years waiting for the next antipsychotic injection.
But Kristen, a nurse from the local public health department who joined on the tour, saw things differently. She runs a County independent supported housing first program and talks about a client who is refusing to be in a higher level of care even though they recently found him in a bathroom almost in a coma defecating on himself with near fatal blood sugar.
It’s so great to see people cared for, Kristen said, also fighting back tears. For some people, an MHRC is just better and safer. And when it comes to whether you see conservatorship as abuse or compassion, your reference point matters a lot.
In Serge’s case, Kerry and her compatriot eventually found a contact in the Department of Mental Health who had stretched privacy laws to tell them where Serge had wound up. Kerry drove to the far reaches of LA to meet him and made a distressing discovery. Although Serge had been conserved for months, he had not actually met his public guardian.
Concretely, that means he wasn’t having any of his social security check transferred to him, so he couldn’t even get food from the MHRC’s small snack bar. Kerry raised what she called holy hell with the county, and within a day or two, Serge’s public guardian reached out.
Serge himself was surprisingly lacking in antipathy towards those who treated him. He expressed his gratitude for the unlocked board and care home he step down into, a setting that provides 24 hour supervision and help with medication management. However, these facilities are evaporating statewide as a result of rising property values, increasing labor costs, and, again, decades of state indifference.
Lauren has visited many of these facilities, and she’s really the person to ask about what makes a good or a bad warden care. In any case, when we spoke, Serge enthusiastically told me about working on his GAD and the new prosthetics he was getting through the aftermath foundation, which helps people who have fled scientology. He was also in the process of dropping to a lower level of care.
When Serge came off conservatorship, he was given a full service partnership, California’s highest level of voluntary services, which would visit him multiple times in his and care. But in California, no level of care is supposed to be permanent. And the future, he’ll have to get to the clinic himself. That’s him getting his GED.
So Serge is a striking success story, but did conservatorship have to be part of it? Kerry told me that for many of the people in the Hollywood top 14, by the time her team engaged, there was nothing left between death and conservatorship. Serge himself was conflicted. Towards the end of our interview, I asked him what I think the question we should all be asking– is there anything that you could have offered you in those years that you would have accepted to get you into housing or treatment?
He said, I would have accepted both, but no one ever offered. I said, if somebody is going to give you an apartment or a hotel room, would you have said yes? Definitely. What would you have said if a psychiatrist visited you and offered to renew your prescription? That would have been good.
Opponents of expanding conservatorship see these kinds of narratives and the evidence that many people in California are requesting housing, drug treatment, or mental health services don’t get them as evidence that the crisis on California’s streets could be addressed without expanding forced treatment.
Instead, we need to engage people with persistent offers of the things they want, which for some people would drew them into treatment was a promise to get them an IDD or a trip to the dentist. And by relying on peers with lived experience to make the connection rather than just traditional clinicians.
Yet at a different point in our interview, Serge gave me a different answer. He told me that in the throes of psychosis, he didn’t necessarily want treatment. As I asked, you’ve had a lot of experience with the mental health system. If you were in charge and you could change one thing, what would you change first. And he said, that they can serve me earlier. So you would have them serve you earlier? Yeah. Even though you didn’t want it? He said, if I got off the street earlier, that would have been better.
Serge’s ambivalence was common in my interviews with dozens of people who had received forced treatment in California. While some people described what they had experienced unequivocally as torture, others perceived it as a difficult but at a certain moment in their life necessary intervention.
I am reaching the end here. But the idea that there are people who need mental health treatment but who, due to traumatic past interactions, bad experiences with medication, or due to the symptoms of their illnesses themselves, cannot accept it has driven three major pieces of reform that I want to briefly review as I close out my presentation.
The first are care courts passed in 2022. These are civil courts that can order people to follow a treatment or housing plan and obligate counties to provide it. These courts don’t have a strong enforcement mechanism, but they can refer a person to conservatorship. Conservatorships themselves are going to get easier to get.
SB43 passed in 2023 changed conservatorship criteria to add substance use disorders and include medical care and personal safety alongside food, clothing, and shelter. Currently 56 of 58 counties in the state have delayed implementation of the law citing capacity limitations, which is why Prop 1, which continues to hang in the balance– we actually don’t know if it’s going to pass, which promises $6.4 billion for new beds, some of which can be in locked facilities, is likely to be so impactful.
My own research suggests that the definition of grave disability expands or contracts based on available beds. So I think this may be the most significant of these reforms. I’m currently finishing or starting moving towards publishing some current research that shows that these reforms put California at the leading edge of a national trend.
Citing concerns about homelessness, mass incarceration, gun violence, and youth mental health, states nationwide have introduced 1,600 bills in the last decade related to involuntary treatment, which with a group of assistants at NYU we’ve been cataloging. Democratic states like California, Oregon, and Hawaii are at the forefront.
Whether these reforms are a pendulum swing towards the bad old days of mass institutionalization or course correction towards a more balanced mental health system depends enormously on implementation. And this is why I think there’s value in California taking seriously a rigorous evaluation component and being ready to shift its approach depending on the results.
So I’ll close with five concluding thoughts, all of which reflect my own somewhat conflicted conclusions in a book where conservatorship really was at one moment a form of abuse, at other moments a life saving tool, and in some cases like Serge’s, perhaps a bit of both.
The first is that California State government has abdicated authority over the conservatorship system. Conservatorship is an immensely powerful government tool, but government doesn’t actually determine how it gets used. The consequences that people like Serge experience both repeated short term coercion and abandonment, sometimes within 48 hours.
My second conclusion is that while there is an absolutely an enormous need for more voluntary treatment and housing in the state, I’ve also found that for a subset of people, these will not meet their current needs. Every housing first provider intensive outpatient program or peer support outreach team I’ve observed has emphasized that they have many clients who need but cannot get into a higher level of care.
For this reason, I wrote at the end of my book that I thought an accountable careful targeted use of conservatorship could help some of these individuals. But as time goes on, I am more and more doubtful about whether the state could actually consistently provide this.
Fourth, my interviews with service users highlights the extent to which our focus on Access to beds and care has often come at the expense of discussing what actually happens to people in those beds, why some people are afraid of sleeping in those beds, and concerns about quality more broadly.
Finally, I recognize that my ability to call for nuance and compromise reflects the privilege of an academic able to take a step back and claim some distance from this issue. Still, I think the near failure of Prop 1 is an interesting caution. The large no vote reflects a surprisingly effective campaign from advocates for voluntary treatment. But I think it also reflects a growing backlash against any spending on homelessness and mental health.
Historically, the biggest divide is not between those who are for and against involuntary treatment between families and service users but between those who believe we have some collective responsibility for addressing these issues versus those who embrace a kind of nihilism about whether anything can and should be done.
The time to do our best to combine our various expertises and approaches to show that we really can do better is now. On that note, I’ll express my intense gratitude and look forward to hearing from Lauren. Thanks for hanging in that slightly longer than promised presentation.
[JONATHAN SIMON] Thank you so much, Alex. We will–
[APPLAUSE]
–bring Lauren up to the podium and I guess maybe move the slides.
[LAUREN RETTAGLIATA] First off, Alex, thank you for inviting me to present with you. I think your book was amazing. And I think many families like mine feel that it is something that needed to be done, and we really thank you for the research. This is a picture of me and my cohorts. And I want to thank everyone here in the room. And many of you who are online.
If you look at this, well over on the left, you’ll see Rose King. Rose King actually was one of the people that penned the Mental Health Services Act, along with Darrell and Rusty [? Seelix. ?] She was the person who really moved it. She was the head of the Democratic Party at the time, and she moved forward.
And next to her is my dear friend and the person I toured California with, Teresa Pasquini. And I’m in the middle there before I went gray.
[LAUGHTER]
So hello to everyone. I am one of the many moms on a mission to help those with a serious mental illness and substance use disorder. Those forgotten and disposed of. The discarded accumulating on our city streets, and also the forgotten. Those in their community, but living stunted existences in their loved one’s back rooms.
So this is the slide all of you have seen. What it is so important to me is that actually in 1974, I actually left the state of California because my oldest son at that time was diagnosed with childhood schizophrenia. Because in the DSM III, there wasn’t yet the autism designation.
And he was going to be placed at the Agnews State School because I kept hammering away, everything I know, everything I read, you’ve got to start working with him when he’s two, when he’s three. They said he– they could take him when he was four, but he would have to go to the Agnew State School.
My husband and I became panicked. I was a researcher, and I found a school district in Texas, the Cypress Fairbanks School District. And that’s where I met a lot of other moms like me, and we really– what that school system had that California didn’t had was an early childhood education program.
And my son, who everyone wanted to put at Agnews State School, today is a janitor at Dreggers, a really nice supermarket. He’s been working. He’s not on SSI. He’s not on SSDI. He’s completely a great human being who drives a car, but prefers to live with his family. We’re one of those old Italian families where if you don’t get married, you live with your family forever.
[LAUGHTER]
Now, this is a slide I asked permission from the Public Policy Institute of California to show. And this gives us an idea of exactly what is happening to people like many of our loved ones who end up just not on the street but actually in jail. And this is one of the saddest things that is happening.
This is why I really became involved. I can’t live with the status quo. I can’t live with when my son goes off of his medication, and he will at some time. Hopefully maybe there’ll be a miracle and he won’t this time, but then I have to search and many times find him in the delta of California involved in the meth trade in what they call meth island, which is Bethel island. Many times he’ll be on the street.
And when Theresa and I were on our first tour right in our own county, this is why it’s all grainy and not so great, is this is what we were up against. So the status quo has failed to help the most seriously and persistently mentally ill and indicted. These are the people who are suffering from psychosis that prevents them from receiving the medical care and psychiatric care they need. People who are not just in danger but whose psychosis will bring great harm to them or someone else.
I accepted the invitation to speak with Alex today to describe to you what LPS conservatorship means to families like mine. There are the A words. They are paramount in any discussion about conservatorship. The first, anosognosia. The false conviction within a person that nothing is wrong with their mind. It stems from the physiological byproduct of psychosis and accompanies about 50% of schizophrenia occurrences and 40% of bipolar cases.
The second is the A word, appropriate. I worked in at the federal government level in the 1984, and one of the things that we had our longest discussion on was the use of the word appropriate in a free and public education, that it had to be appropriate. And I think that this is paramount to our understanding because as you mentioned, it’s not necessarily the laws. It’s the implementation of the laws. It’s the implementation of what happens.
Appropriate, like anosognosia, is essential when decisions are made regarding treatment and placement. We hear so often about least restrictive environment. But too often, appropriate has been dropped. This word appears in state and federal legislation and is essential. It was placed there to assure that in all placements, what is done will bring benefit and prevent harm.
We want our loved ones civil rights protected through a due process hearing. We want the conservatorship to come up for renewal every year. We want a person who is conserved to have a placement review hearing if they disagree with their placement. We want the structure of the LPS conservatorship to be there to prevent further harm for the person to be given the opportunity to live as full a life as possible. And a conservatorship does that. All those things I mentioned, it does that today.
In California Senate Bill 43, the new LPS conservatorship statute when finally enacted in every county in California will give us the opportunity to see if medical intervention can enable people with a severe and persistent mental illness or addiction to recover in the appropriate, least restrictive setting.
Senate Bill 43 changes the definition of grave disability in two ways. It clearly states severe substance use disorder as a reason someone can be considered for conservatorship. And why personally this is important to me was, believe it or not, when someone has been in the system for a long time, their records get lost.
I happen to be a pretty faithful researcher and record keeper, so I kept mine. But I thought it was amazing when my son’s conservator told me that my son, he felt, what really didn’t have that much of a mental illness but what he had was a substance use disorder. Of course, he had a substance use disorder. He was a meth addict.
But everyone had forgotten that since he was 17 and 1/2– and now he was in his 40s, that he had schizophrenia. This gets forgotten. And what we can’t do is we can’t sit there and argue which came first, the chicken or the egg? They’re both very, very severe medical situations that need to be looked at.
The other is, and most importantly, what this new LPS conservatorship statute does it it adds a person’s inability to provide for one’s personal safety or necessary medical care to the old statute that was only concerned with a person’s inability to provide food, clothing, and shelter as reasons for a person to be held on a conservatorship.
The Substance Abuse and Mental Health Services Agency, SAMHSA, the federal entity that gives guidance to the state mental health system, describes recovery as this– a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.
A real life situation, though, is not addressed in this definition. What happens when a person is suffering from psychosis with a delusional thought process and has lost touch with reality? Conservatorship addresses this. It provides a structure needed so that lives may be stabilized and a person has a chance at recovery.
I logged many miles touring the state with Teresa Pasquini. Our mission was to find housing models that could be replicated that ended the human log-jam that sent people back to the street and locked doors where many fell into addiction and zombie like existences. We visited many types of living environments included the mental health rehabilitation centers and adult residential facilities. Now, I’m going to go through and show you some.
This is the best of the best of the institutes of mental disease, or as we call them in California, the mental health rehabilitation centers. This is in the Central Valley of California. It is not a nonprofit. I don’t think that the family that owns it are making huge amounts of money. They’re a family of psychiatrists, and this is the gold standard in the state.
Theresa and I have been to many, and this is what we need to have. This is why we don’t have as many as that. Because the counties or the insurance companies now have to pay $450 to $500 a day average. But what if we did that? What if we actually took that amount of money? I think we may, not for all, but for many stop that revolving door.
This is Eva Wells Behavioral Health. Now this is a for profit, not locked. But what is amazing about Everwell Behavioral Health is, they cherry pick the people who came to them the least. Remember there’s a shortage of beds, so everyone who is vying for– and I don’t like to call them beds, but placements within a facility, they can say no, we don’t want that person.
They’ve got diabetes. It looks like they might be losing a limb because of gangrene. They might have a colostomy bag. We can’t take them. Or they may be coming out of Napa State Hospital or another state hospital. But oh, put them in there. They have also– they might be a pedophile or something like been diagnosed as being a pedophile. So Everwell will take everyone– will take people before most other places will.
This is one of their facilities. It’s out in the Stockton area. One of their chief things that they really want to do is they want to give people real food. That they don’t have a psychiatrist and a psychologist on staff like CPT does. That’s the one good thing about CPT. They do have people with master level clinician status there.
But now this is the gold standard when we travel the state for facilities that contract with the counties. That means, these are people that aren’t on private insurance. And almost everyone after many years on the street or many years having a severe mental illness or substance use disorder is going to be using the county behavioral health system.
Synergy contracts with our county behavioral health systems. 95% of the residents are, as you can see, on Medi-Cal, Medicare, or Veteran Affairs. There are facilities– there’s one in Morgan Hill, there’s one South of Morgan Hill, and now they have a group of them that are opening up in Stockton. Almost everyone there is conserved. So you don’t have to be in a locked facility. You can be in an unlocked facility.
When I showed you– the other three previous ones I showed you were classified as for profit, OK? One of the reasons they were classified as for profit is, until just recently, in order to build a facility or in order to enhance a facility, you had to go get a loan from a bank. It’s very hard to get a loan from the bank if you’re a nonprofit. A for profit is a different story.
So that’s why many of the people and the places that you see caring for those with serious mental illness, they are for profits. This one is not. It is a nonprofit the problem for me– for the problem for the people that are there– it was amazing. We spent two days there looking at this place. They keep their residential program only to those with a schizophrenic, spectrum disorder.
But look at the cost. Look at what they managed to do. They’re charging families about $40,000 a year. Of course, they have other foundation money that is keeping them alive and well. And these figures are 2019. I haven’t checked in with them, but this shows you what can happen. It’s cheaper to care for people in a facility like this.
And what they did in Santa Anna was, they bought this block that was falling apart. This cul-de-sac that was falling apart, they purchased all– they purchased three homes at the top of it and then worked with the other two families and offered them a lot a really good price to move out, and they took over a cul-de-sac in Santa Ana.
Now, Santa Ana is in Orange County, but it’s not your wealthiest part of Orange County. So it is a good place. They’re on the bus route. They can go to community college. There’s a lot that can happen there. They have a few people who are conserved, but not everyone. OK.
So to prevent homelessness and the endless cycle from street to jail to the emergency room, we need to move from scarcity to abundance. And we don’t have– what I showed you, there’s just not enough of those. When someone is seriously mentally ill or addicted and is discharged from an emergency room, we must ask, discharge to where? Back to the street is not appropriate. It is wrong.
Appropriate is a key to providing the correct care. The setting must bring benefit and not cause further harm. Too many people are sent back to unsupported living situations often left on the street to die 20 to 30 years before they should. That’s a fact with schizophrenia.
It is a fact also that most large counties find their jails are their largest behavioral health treatment facilities. And then there are the open air asylums found in our urban areas and encampments along our byways and rivers where those suffering from untreated mental illness and addiction live and are preyed upon.
And if you’ve been to downtown Los Angeles– I know that Alex spent some time with my friend Susan [? Partovi. ?] She ministers and brings her medical ability to those that are in the open air asylum of downtown Los Angeles. We the people of California still have promises to keep. The promise we made when we closed the state hospitals, and we would provide treatment and care for the most severely ill in their communities.
We abdicated our authority. It was and is our responsibility to call on state legislators to provide adequate funding. Instead, we passed on the authority first to the state who passed it on to the counties, but we the people never funded a system of care that we promised.
Not all people can recover to the point where they will need a room key and the availability of supports and services. This is housing first, and it works for a lot of people. It’s not a bad thing. It’s a really good thing, but not for all. Prevention, early intervention, and peer supports are essential. But let us not forget those who need more, those who need intensive psychiatric support, those who need to see a psychiatrist, psychologist, or master level clinician very frequently to assure correct treatment is given so that they are not living in a world filled with psychotic delusions. This is housing that heals.
Our robust group home industry developed for those with an intellectual disability because a sufficient amount of funding followed those who need intensive care within the community. As you can see from the bottom arrow over there, if you have an intense intellectual developmental disability and you’re in a facility that has more than five beds, the state is getting close to $12,000. The state is giving $12,000 a month for their care.
For adults with a serious mental illness, it’s about 1,000. And the reason it’s 1,000 is they back out the Medi-Cal and Medicare portion, which is about $300, and then that leaves with less than 1,000. Also, all good board and cares will also keep back and give their person some money. So when my son has been in situations like this, the facility is probably getting about $750 or $800 a month.
In our tour of the state, we observed that both for profit and nonprofit entities can build and provide care within the community. I know that LPS conservatorship saves lives. I have also seen it fail because conservators sometimes do not understand the intensity of the illness that– and they want to treat the person in a setting that is not structured enough.
Too many of our loved ones have left housing placements that are not appropriate and ended up enslaved in the underbelly of the drug world or worse, dead. This is Allison Monroe. She’s a dear friend of mine. This is her daughter, Diana, who passed. She left a board and care, which really wasn’t a high enough.
Conservators have a great responsibility. And when people are not put in a place where they get enough support and structure, they wander off, and they end up like Diana does. And that was dead from an overdose of fentanyl. So thank you very much, and I appreciate your patience.
[JONATHAN SIMON] Thank you so much, Lauren. And our audience here has been terrific. So I think we have time for questions as well as for online. So I’m going to invite my real experts to have a seat so that they can field these questions. And should we go back and forth between the room and the virtual world? We have a couple in the room. We could do two at a time perhaps. You guys are all right with that?
Yeah.
If there is demand. Give people a moment to not feel the Goffmanian stigma of raising their hands. Do we have something online we could start with? There we go. Richard.
[AUDIENCE MEMBER] I just wondered if either or both of you has anything to suggest about the strategy that California should pursue for the next year or five or 10.
That’s–
Was there another–
[JONATHAN SIMON] Anyone want to add on to that?
Can you say it again, please?
Do you mind repeating the question?
I think it was, what’s the best course California should take in the next one to five years in this area?
Please.
Can you–
Just until you get the mic. Thanks.
[AUDIENCE MEMBER] Can you talk about the process of competing for beds between different counties.
I’m sorry I couldn’t hear.
[ALEX BARNARD] The competition between counties for beds. And do you think– I mean, there’s what should we do in the next five years is really– I mean, It’s a great question, but it’s also such a vast question. So maybe I’ll just target thinking about, again, we have this huge discussion about beds. We need beds, beds, beds.
And I think we need to have a much more careful discussion of– a bed is a mattress. And you can build a bed in a congregate homeless shelter and you can build a bed in a state hospital that is highly secured and you’ve built two beds, but that’s really, really different.
And so I think a couple of things I talk about in the book. I mean, I think that the need for more– I mean the need for more housing is– that’s our baseline. But the need for more residential treatment settings, I think, on the ground, you really, really see it. But does it need to go into building more locked settings?
I think one thing we could start by saying is that many locked settings have many people who have been deemed appropriate for discharge. By any standard, the people are not supposed to be there. But for a lack of step down providers, therapeutic unlocked settings, people are stuck in these placements.
And so I think really trying to figure out, what is the thing we need between these locked settings and between people being able to survive on in supported housing, what is the process, the skills people need? I think that missing middle of the continuum is probably where I would invest the most.
But I do think it’s maybe not just about for profit or nonprofit. Nonprofit, I think you’ve really helped me challenge my sociological biases against anything for profit on that. But I do think we have a system in which counties are currently bidding against each other to get access to these scarce beds, which has all sorts of– I mean, it increases costs, it gives a huge amount of leverage to these facilities to decide who they’re going to take or not take, and it has these super tragic consequences in terms of people being scattered around the state.
Because I talked to one county that had 100 beds MHRC in the county, but they could only afford– they had only won the contract for six of those beds and they were actually losing that contract to another bigger county. So all of their conservatees were going to be sent out of county even though they had a facility in the county.
And I talked to county mental health directors who were very honest of like, we’re just buying up– we’re going to the neighboring county and we’re buying this up. And when I talk to people in the state, they’re like, yeah, that doesn’t make sense. Counties shouldn’t be doing that. It’s like, yeah, if only there was some layer of government above counties that could– so I think there’s a–
[LAUGHTER]
So I think there’s a huge amount of– there’s a lot of opportunity in terms of smart investments to use the beds that are available better, And I think there’s a need for a much more rational system. One psychiatrist described getting into these facilities is a beauty contest where you misrepresent and lie about somebody’s needs in a way that will make– you make it so they won’t get ruled out. I mean, I think I’ve lost a little bit the thread of this response. But I think there’s a lot of space for sorting out the residential treatment system in which I think a more engaged state government could be incredibly helpful.
[JONATHAN SIMON] Lauren, do you have a take on that?
[LAUREN RETTAGLIATA]Yeah. Could you move it back one?
Let’s see here. Oh, there we go. Have a real expert.
So I’ve been on both sides of the aisle, on the IDD committee and the seriously mentally ill committee. And the one reason why things aren’t getting built and the one thing– and because you can build it. But if you don’t have the money to actually provide the treatment and care, what we’re going to end up with is like a picture I saw in San Diego that broke my heart. And that was, in getting ready for the Affordable Care Act, that they were going to have this bridge housing.
And what the bridge housing was basically looking like the worst inside of prison. They had beds stacked three high, six across, three across an aisle and three across. That people are not going to stay. People who are ill need to be in an environment where they can get well, and that will cost some money.
And we do ha– we did, as a state out of our gen– see, there’s general fund, pays for those with an intellectual developmental disability. We on the severe mental illness side, it’s realignment one and realignment two an MHSA, and leveraging all those dollars so we can pull down federal support dollars from our federal dollars.
So this is where we as California are having a problem. Maybe Cal Aim– hopefully, Cal Aim will open up and cause more money to flow into places like I showed you like synergy and Everwell so that money will be there so that they can actually expand their services.
They’re not about to go out and to build new facilities unless they know that the money to pay their clinicians, their psychiatrists, and their psychologists are going to follow them. Now, synergy has a great model, and it is– and that is, they have what is called a certified mental health clinic right next door to their facility.
Because our California law does not allow them to be at the same address. So they’re actually– they’re wise about it. So they are able to bill because they have a facility with 90 people in it. They have a full time psychiatrist, two full time psychologists and master’s in social work there, and they have broken the code, all right?
Other places like Everwell do it a little bit differently, but they do need more than $45 a day. We’ve got to be realistic. And that is what– even with patches, each county, if they use their MHSA money wisely and they use their real– they can actually bring down some federal dollars, and they can pay for better care at the better facilities. But no one is going to build these facilities until we actually get real about what it costs to get someone well.
[JONATHAN SIMON] There’s a follow up on this because I’m really struck by this chart, Lauren. Thank you so much for sharing it. And I would love to get both of your thoughts on this. I mean, what account– a, what accounts for this huge disparity in treatment between intellectual disability and mental illness? We’re taking one group of people and we’re giving them at least something approximating what they need. And we’re taking another group and essentially not even coming close to it in a way that guarantees both their suffering and our own confusion as to who’s responsible for it. So what would it take to bring this top number down to this much more adequate amount? Is that a federal piece of legislation? Is it a new state law, and why haven’t we had it?
[LAUREN RETTAGLIATA] Combination of both.
[ALEX BARNARD] Yeah. I mean, I think it’s so striking that Frank Lanterman was the sponsor of both the Lanterman-Petris-Short Act and the Lanterman– it was called the– now the Lanterman Developmental Disabilities Act, and they really did set up two very different kinds of systems. That the mental health system was set up as they’re these grants to counties, but counties can use them how they want.
And in the end, the counties really didn’t serve the population of people coming out of the state hospitals. And the commitment with the Lanterman Act for people with developmental disabilities was set up as an entitlement program, that the funds would match the need automatically as opposed to the mental health system where it’s still written in the law that services will be provided to the extent resources are available.
And so there’s a very different architecture and a very different kind of commitment that was made very early on, I would love to dig in to understand that. But I do think there are some researchers that have looked at the different discourses around deinstitutionalization and how people were represented and the extent to which there was an incredible amount of stigma.
But also this idea that if you take people with mental illness out of the mental health system and you just put them in the community with these new magic medications, they’re going to be productive citizens and everything is going to be fine, versus a very paternalistic discourse around people with developmental disabilities that is often, they was presented as the forever children that we have this obligation to.
So we can find problems in both processes, but I do think it’s significant that no one is saying we need to re institutionalize people with developmental disabilities. So I think it suggests that the idea of deinstitutionalization, there was a failure in its implementation particularly for people with mental illness.
But that’s not– clearly, this is a process that could have gone much better if the kind of commitment that was made. And if you dig into the developmental disability system, you immediately find tons of problems. I’ve done some interviewing about it because within the mental health space, we hear, oh, it’s so much better over there. So I wanted to go see if that was true.
And you hear about all these problems, but at the end of that interview, someone says, but thank goodness we’re not the mental health system. That this system, it does work better. And I think it’s really tied to this idea that there’s an entitlement, they’re going to evaluate a person, and after that, the state has the responsibility for contracting for the services that were evaluated as necessary and it’s not constrained funding wise in the same way.
[LAUREN RETTAGLIATA] I agree with everything you said, but I think we also have to be realistic in that in the 70s and 80s when the funding streams were being developed, people with a mental illness were seeing as having bad behavior. And people with an intellectual developmental disability, people knew something is really wrong with them.
Their behavior is not like everyone else’s and they may need help because their brain doesn’t– their brain and central nervous system and with their gut system, it is not working properly. We didn’t see that, I think. And when we did– people in this room probably did, but there’s a large swath of the population that didn’t. They thought it was bad behavior.
And that if it was an illness, that if we just gave them the medication, they’re going to get better. Well, guess what, not everyone with schizophrenia, with bipolar gets better. A lot of people do. And that is wonderful. And I work diligently with brain and behavior and the researchers out there, we’ve got to keep going. It’s going to get better. But not everyone gets better on psychiatric medication.
And I think we thought we didn’t know what was going. Also, Borden care’s work really well. If you have 12 people or 6 people in a home for those with an IDD, when you get people who have schizophrenia and they have been taking their medication for a while and everything, they want a community.
They don’t want it– in Borden cares, there is so much regulation. They can’t cook. You can’t make your own meal. You can’t do your own laundry. You can’t even have a garden in your back yard– in the back yard. So we need a different way of doing it. We need places where they have a community too within a community so that– much like a college campus. We need that, but not big huge institutions . No one wants to go back to having 1,000, 2,000 people in a state hospital. That’s awful, and I’m glad it stopped.
[JONATHAN SIMON] Thank you so much, Lauren. Do we have some folks online? Otherwise, we can–
[JULIA SIZEK] Yeah, we have a lot of questions online. So I’ll just– I’m going to read a couple of them. So one from Martina Satris who says, the determination of who is incompetent to control their own lives, money, and living places historically aligns with those not valued by society.
Native Americans are an example within California history, and she references the Palm Springs checkerboard for Agua Caliente and the guardianship system that was used, I think, during the 60s. With a broadening loosening of conservatorship, how do we insure against cultural bias informing who is determined to not be mentally competent?
And then I’ll highlight one other question from Cari, who says that she’s grateful to hear these stories and wants to honor Diana and many people who have lost their lives as a result of the country and state’s unwillingness to adequately fund truly holistic, life-affirming care and support for folks and their families.
I’m wondering about the potential for more expansive support for families, communities that care for their loved ones with SMI. What do Lauren and Alex think about creating more funding for care teams of psychiatrists, social workers, occupational therapists, et cetera, who could provide wraparound support for families, caregivers while keeping their loved ones in the home.
[JONATHAN SIMON] So why don’t we tackle those two and then I think we’ll have time to come back for a couple more from the room.
[ALEX BARNARD] Yeah. I think the– I mean, racial disparity in historical disparities in who’s deemed incompetent is something that looms over my– something that I think looms over all of this in the sense that, again, I think that there are situations that I encountered in my research where it felt like conservatorship was the only option. And that’s what led me to this conclusion of, well, could we have an accountable conservatorship system, a well regulated conservatorship system, carefully evaluated conservatorship system?
But it is true that if we kick the tires on any part of the mental health system and look at who’s facing more mechanical restraints in ERs, who’s more likely to have involuntary medication? Who’s more likely to in the most recent disability rights California report, who’s more likely to be stuck in jail even though they no longer even they legally can’t even be in jail but they’re waiting for step down placement? It’s like the– it’s always people of color.
And the fact that it is– there’s no place where we don’t find that, to me is like– it is the thing that makes me certainly makes me wonder about what I– this vision of, you could have this accountable conservatorship system. It’s just that hasn’t been created anywhere. There’s no place where we don’t see those racial disparities, and I feel like that’s something that is we have to sit with and think about for sure.
I think this question about support for families is so core, and I think this– I think that was also raised in terms of the professional. We have a huge workforce crisis in California, and I think that’s why it was interesting they mentioned– I don’t remember the exact list, but we need to be thinking about other sets of professionals to be involved in this– occupational therapists, peer supporters, psychiatric nurse practitioners, and bringing in a broader set of expertise.
But I think certainly, one of the ways– one of the consequences of the state’s abdication of responsibility in this space is just the assumption that families will pick up the slack. And I think that has been deeply unfair across the board, and I think there’s a huge amount of responsibility for creating better supports for families.
[JONATHAN SIMON] Lauren, did you want to comment on that or?
[LAUREN RETTAGLIATA] Well, my experience in the experience of many of the hundreds of advocates– and I do get probably about 100 calls a year, is that when someone is so ill that they will qualify for a conservatorship staying in their family home at that point probably is not the answer. Maybe it will become the answer, but it isn’t the answer at that time.
The other thing that I think that Alex shows in his book that I think was really good is that our public guardian system is in chaos. It really does doesn’t exist. It’s not even a state– public guardians. Office is a nonprofit institution in my own county, the conservatorship office is– it’s in deceival. It’s not there.
That when we are guardian– our public guardians for those of the serious mental illness and our conservatorship programs are different in every single county. And they are drastically underfunded in my County. I’m sure that in your counties, they are too. But I actually know the dollars and cents that are in my county, and I can say, this is tragic. We have to build a system and we have to make sure that our public guardian offices are financed.
[JONATHAN SIMON] Let’s take one or two more, and then we’ll give a final word. So how about you and you over here.
[AUDIENCE MEMBER] Thank you. Thank you so much to all of you for talking about this subject. I have a lot of questions. How do I boil it down? I’m really interested in this slide and the conversation about different disabilities. It was actually something that I was thinking about in reading the book and wanted to ask Alex in the conversation at the very beginning about language when you were talking about the different ways to talk about mental health, that you didn’t include mental health disability.
And so I was curious about that. And this, I think, just– I was alarmed a little bit, there’s so much within disability community and just marginalized communities in general of pitting groups against each other. And so how can we learn from each other without saying, well, they have it better than we do? Which I know is not what you were intending to say, but I think it’s easy for people to go there.
And it’s a really interesting question for me about, how do we learn from different disability models and see what’s out there? And how do we allow people with mental health issues to connect and learn from other people with disabilities, which never happens in institutions across disability? And I thought I had one related question.
Why don’t we–
Sorry, just the last thing on institutionalization was, it reminds me of the burrito rule that gets used as a sign of whether it’s an institution. Can you get up at o’clock in the morning and get yourself a burrito? And so just curious how do you see that playing out in this issue?
[JONATHAN SIMON] We get one more, and then we’ll come back for a final word to our panelists. I thought it was right here in the gray. Thank you. Sorry.
[AUDIENCE MEMBER] I guess I wanted to see if you guys can talk a little bit more about the connections between disability justice and the carceral system. Just because I know one of the slides was saying that a good chunk of people who do suffer from mental illnesses do wind up in the carceral system. So I wanted to see how you would go about talking about that, and also how maybe defunding one system can really help out with the funding for this system maybe, I don’t know.
[JONATHAN SIMON] Thank you very much for that. So let’s come back to Alex and Lauren, and we’ll thank them.
[LAUREN RETTAGLIATA] You mentioned about the carceral system. I sit on the– I’m the family member on the Affordable Care Act work group that the governor has formed. And there are nowhere near the amount of people that are being petitioned into care court as they thought there would be, which is a good thing because it’s giving each county time to get its sea legs.
But one of the strange things that they didn’t think of is that they are having people who are in jail, not in prison, but are in jail are actually filing petitions so that they can become– be brought before the care court and receive the promises that are being made in the care court. There are a number of people.
Also, the Affordable Care Act did not think that there would be as many family petitioners. How they missed that one, I do not know, but they did. And so those are the things that I see that– if I had my way, I would– when they do the intake in the jail, if someone presents as if they’re 5150, could be 5150 or even close to it, discussion should stop and they should be sent to the psych emergency center or emergency room or the standalone psychiatric facility, and that’s where it should begin.
[JONATHAN SIMON] Alex.
[ALEX BARNARD] Yeah. I mean, there are– there are several questions on the table. So let me– the language one was something I did think about a lot and knew that I got it wrong, but the question was how wrong to get it? In the sense, that the terms itself are so contested. Even if you say, people with mental illness. Well, some people contest that they have– the whole point is that there’s a debate.
So I will say that at the end of everyone I interviewed for this, I asked them this question of how do you think– what are the words that speak to you on this topic? How do you want to describe this? And mental health– for the people who had experienced involuntary treatment, I didn’t hear mental health disabilities that often.
And I think that’s– it’s interesting. And I don’t– and I think there’s the question of people first language. I think disabled people has caught up, but mentally ill person still feels very– something that people are very uncomfortable with. So the language question, I think, is fraught and I don’t necessarily think I got it right. And I appreciate that feedback.
I think the– looking at something like this, I will say, I don’t hear anyone in the mental health space saying, we should take some of the money from developmental– people with developmental disabilities and bring it over to the mental health world. I think it’s a– we would like to have parity with that.
Obviously, the sad situation we’re in is when these things do become zero sum. But I think there’s more we could learn than just the money piece of this. I’ve had some interesting conversations about services for– again, for this group of people, for people who have very serious behavioral issues but are in placements that are not locked but with two on one staffing or with Plexiglas windows– there are actually a whole lot of design innovations and staffing innovations that I think there are things that to be learned from that are not necessarily being learned from in the mental health space. And I wish I had more time to learn about that.
But we are–
[JONATHAN SIMON] We are at time.
–in fact, at time. So I just want to thank all of you. I want to thank the UC Berkeley Social Science Matrix for putting on this really important California spotlight on conservatorship. I want to recommend along with Lauren that you read this book because it really is totally apropos to our situation. And I’d like to invite you to help me thank our two panelists for this terrific discussion.
[APPLAUSE]
[ALEX BARNARD] Thank you. And I’m very happy. If you have comments or feedback or questions or critiques, please send them. I would be very–
[INAUDIBLE].
I could sell you a copy right here, I suppose. But–
[INAUDIBLE] book tour.
Yeah. But thank you very much for your time and for coming.
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[WOMAN’S VOICE] Thank you for listening. To learn more about Social Science Matrix, please visit matrix.berkeley.edu.
