Catalyst Fall 2020

Personally Speaking

COVID-19 Research Roundup

Grading the States

A N E W S L E T T E R F R O M T H E T R E AT M E N T A D V O C A C Y C E N T E R

THE PUGILIST

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FA L L 2 0 2 0

By Emily Kubera

At 82, Dr. E. Fuller Torrey is still ready to fight the righteous fights Photo by Geoffrey W. Melada.

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R. E. FULLER TORREY WAS LIVID. The National Institute of Mental Health (NIMH) had just released its five-year strategic plan in December of last year. In response, Dr. Torrey and the Treatment Advocacy Center wrote a thorough — and devastating — analysis of how this plan would fail people with severe mental illness.

But Dr. Torrey didn’t stop there. Next, he mobilized the public to submit their own reactions to NIMH’s plan. “Given the fact that the last new psychiatric drug for psychosis was clozapine, which was approved 30 years ago, the time is long past due when the NIMH should undertake an aggressive search for better drugs,” he wrote in Treatment Advocacy Center’s May 2020 Research Roundup.

NIMH had expected only a few hundred responses to its strategic plan. Instead, the federal agency received over 6,000.

NIMH’s current leadership “has no interest in doing anything but basic science, basic research – no interest in clinical research at all,” Dr. Torrey said in an interview, adding that they “need to be reminded on an hourly basis.”

Today, at 82, Dr. Torrey is still up for a good fight, but only the righteous ones.

Dr. E. Fuller Torrey at home in Bethesda, Md.

These days, when he is not actively fighting NIMH, you’ll find Dr. Torrey and his wife Barbara, a former economist and a member of the Treatment Advocacy Center Board of Directors, in their historic home overlooking the Potomac river.

Located in a quiet, tree-lined neighborhood in Bethesda, Maryland, the sunlit house and its lush garden offer a stark contrast to the intensity of Torrey’s work, and a temporary respite from it.

Though Dr. Torrey’s long career, which includes publishing some 21 books, has been marked by many righteous fights, his first fight was perhaps his most personal.

He was studying religion at Princeton University in the 1950s when his younger sister, Rhoda, was diagnosed with schizophrenia. Back then, there was little research on severe mental illness, especially schizophrenia, he explained.

“The main obstacle was the belief continued on page 9

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MESSAGE FROM THE EXECUTIVE DIRECTOR

Mental illness reform in the headlines

These important policy conversations will likely shape the trajectory of our nation for generations to come. The Treatment Advocacy Center has served as a key resource to help inform those decisions. For decades, we have documented how policy failures have forced law enforcement onto the front lines of mental health care – a role they didn’t ask for and are ill-equipped to assume.

This summer represented something of a culmination of those years of work as communities across the country and the media sought out the Treatment Advocacy Center for guidance. In June and July, the Treatment Advocacy Center saw more than 615 million media impressions on these issues. We were asked to testify on the criminalization of mental illness before the Presidential Commission on Law Enforcement and the Administration of Justice and saw important legislative reforms pass in states across the country.

But if you know our talented professionals, you know they are not resting on their accomplishments.

Just last month, we released the latest iteration of our influential “Grading the States” report. It is amazing to see how far the psychiatric treatment laws throughout the country have come in our 20 years of existence. And we are especially proud to note that TAC has successfully supported nearly 100 bills in 35 states to make treatment more timely, effective and accessible.

“Grading the States” documents which states have made the most progress in enacting progressive laws to get people better treatment sooner. But it also serves as a roadmap for advocates and policymakers to understand how their state can take steps to better help those in need.

Finally, our cover story reflects on the righteous fights undertaken by our founder, Dr. E. Fuller Torrey, on behalf of people with severe mental illness and their families, starting with his own sister. With characteristic humility, he demurs at the notion that his storied career is worthy of such reflection. But the truth is that there simply aren’t enough volumes of Catalyst to contain Dr. Torrey’s accomplishments, or to measure the impact of his mentorship on mental illness advocates across this country, including me.

Thank you for being a supporter of the Treatment Advocacy Center and for all you do to help us achieve Dr. Torrey’s vision.

We couldn’t make all of the amazing progress we do without you. And for that we are truly grateful.

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top priority of Treatment Advocacy Center is to educate policymakers about the broad societal consequences of our system’s failure to adequately treat mental illness.

Dr. Brock Chisholm, the first Director-General of the World Health Organization, famously said, “without mental health, there cannot be true physical health.” Our work seeks to expand that vision to include the reality that, without mental health, there cannot be true societal health.

Two major events this past summer served to underscore this reality: the outbreak of COVID-19 and the death of George Floyd. Both issues laid bare just how frayed our system for treating severe mental illness really is. And as that system failed, it became impossible to ignore that the consequences of failing to provide mental health care extend far beyond just the mental health system.

It comes as no surprise to Catalyst readers that our priority population is uniquely vulnerable to COVID-19. Research shows that people with severe mental illness are more likely to smoke than the general public and to have additional medical conditions that make COVID-19 potentially more damaging. Those who are homeless and mentally ill may also have limited ability to meet social distancing and handwashing protocols. Sadly, our mental health system has largely ceded care for the most seriously ill to jails and prisons – sites that have been especially associated with COVID-19 outbreaks.

The Treatment Advocacy Center team responded to this unprecedented threat in a number of ways: We published resources to help families and consumers respond to COVID. We established online forums and meeting spaces to share lessons learned and potential responses. We worked with assisted outpatient treatment practitioners across the country as they reshaped AOT programs to succeed in this new reality.

And our research and policy teams assisted policymakers and media across the nation understand how and why our mental health system’s failings were implicated in the COVID-19 crisis and what could be done to mitigate those concerns.

With COVID-19, as with so many other issues, our message was clear: Failing to treat severe mental illness makes the larger crisis that much more difficult to solve.

The killing of George Floyd brought the nation’s focus to the role of law enforcement, especially in mental health response.

John Snook 2

PSYCHIATRIC EFFECTS OF THE COVID-19 PANDEMIC

By Dr. E. Fuller Torrey

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ollowing the influenza pandemic of 1918, there was noted to be an increase of individuals presenting with the symptoms of schizophrenia.

Karl Menninger, who had just completed his psychiatric training, published two summaries of these cases and concluded that schizophrenia could be caused by a virus. Menninger then became intrigued by psychoanalytic theory, which was just becoming prominent in the United States, and unfortunately never followed up on his viral research.

The virus responsible for the COVID-19 pandemic is a coronavirus which, like the influenza virus, is a respiratory virus. Both viruses are also known to affect the brain. For these reasons researchers have wondered from the beginning of the COVID-19 pandemic whether it will also lead to an increase in cases of schizophrenia. Researchers therefore asked what is known about coronaviruses in general and schizophrenia in particular. To seek answers, they turned to Dr. Robert Yolken and the Stanley Laboratory of Developmental Neurovirology at Johns Hopkins, the only laboratory in the world that has systematically examined links between a variety of infectious agents and psychosis.

The researchers found that Dr. Yolken and his colleagues had examined this

issue 10 years ago. They had not, of course, examined the covid strain of coronavirus since it was not known at the time, but they looked at four other strains of coronaviruses known to infect humans.

They measured antibodies in the blood to these four strains in 106 individuals who had had the onset of psychosis within the last two years; half were diagnosed with schizophrenia and half with psychosis with bipolar disorder or depression.

The 106 cases were compared to 176 matched normal controls. Two of the four coronavirus strains were found to have statistically significant higher levels 3

of antibodies in the cases compared to the controls with the differences being most marked in cases diagnosed with schizophrenia. This suggests that some coronaviruses may play a role in the onset of psychosis.

Dr. Yolken is currently working with Dr. Dickerson, the primary investigator of the Stanley Center at Sheppard Pratt Hospital, and other investigators to test samples for antibodies to COVID-19 viral proteins. Studies to date indicate that some individuals with psychiatric disorders have antibodies to viral proteins even in samples obtained before 2020, perhaps as a result of exposure to related coronaviruses.

These antibodies may provide protection or otherwise alter the course of COVID-19 infection when it occurs or response to future COVID-19 vaccines.

These possibilities will be addressed in follow up studies which are planned or underway.

The Stanley Medical Research Organization is a supporting organization of the Treatment Advocacy Center.

Dr. Torrey is the founder of the Treatment Advocacy Center.

Dr. Yolken is a board member of the Treatment Advocacy Center.

OFFICE OF RESEARCH & PUBLIC AFFAIRS :

COVID-19 Research Roundup

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s the country enters a tumultuous fall with COVID-19 continuing to spread throughout the United States, Americans are trying to adapt to countless, oncoming challenges

in their lives. While there is a growing understanding that the COVID-19 crisis dramatically impacts the mental health needs of Americans, the outsized impact that COVID-19 is having on those with severe mental illness and their families is often not part of that discourse.

The Office of Research and Public Affairs at the Treatment Advocacy Center is dedicated to addressing knowledge gaps on the impacts of severe mental illness on individuals, families, service systems and policies. The more information we have on how COVID-19 impacts people with severe mental illness, the greater the potential for reversing these disparities and fixing the systems that cause them. Therefore, research into severe mental illness and the dissemination of that information is more relevant now than ever before.

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Every week, we produce a research blog, Research Weekly, with new research and information about severe mental illness for our followers.

Below is a roundup of some of our published material on COVID-19:

Increased cases of psychosis predicted due to COVID-19 New cases of psychosis may increase because of the COVID-19 pandemic, according to researchers from the University of Melbourne, Australia published in Schizophrenia Research in May. The study authors conducted a meta-analysis, combining the results of fourteen published studies on past viral epidemics and pandemics, including SARS, Ebola, MERS, 2009-2010 H1N1 and other coronaviruses. Seven of these papers found new cases of psychosis linked to patients being infected with a virus. Another two found new cases of psychosis linked to those not infected by a virus but living in an area where the virus was prevalent in the community.

Other studies found individuals with psychosis had more problems adhering to protective measures for epidemics, like wearing a mask. Additionally, two studies found that psychiatric services were impacted by the presence of a virus outbreak. Admissions to the hospital for psychosis, length of hospitalization and outpatient appointment attendance all decreased.

COVID-19 and severe mental illness prevalence Coronaviruses can invade nerve cells and have been found in brain tissue postmortem. In addition, various research studies have linked viral infections to psychiatric illnesses, including those authored by Treatment Advocacy Center Founder Dr. E. Fuller Torrey and studies funded by the Stanley Medical Research Institute (SMRI), which supports the Treatment Advocacy Center.

For example, a research study funded

by SMRI and published in Schizophrenia Bulletin in 2011, found that patients with recent onset psychotic symptoms were more likely to have an immune system response to four different types of coronaviruses, compared to the control group of individuals without psychotic symptoms.

The authors conclude that “coronavirus exposure may be a comorbid risk factor in individuals with serious mental disorders,” and that “more investigation is needed to determine if respiratory infection and subsequent neuroinvasion could explain the association of increased coronavirus seroprevalence and the recent onset of psychotic symptoms.”

Because of the known risk of viral infections in the development of psychotic disorders, even if that risk is low, the large population exposure to COVID-19 may have drastic implications for the prevalence of psychiatric diseases in the future.

Impact of COVID-19 on people with severe mental illness Researchers have suggested that there is an increased risk for infection in people with schizophrenia due to difficulties adhering to infection control measures, both in understanding the risk and as well as due to living in congregate settings making distancing challenging.

Individuals with schizophrenia are more likely to have poorer outcomes if infected due to the high prevalence of smoking and co-morbid physical health conditions.

People with severe mental illness smoke tobacco at rates significantly higher than the general population. For example, research estimates that between 60% and 80% of people with schizophrenia are current smokers. Chronic tobacco use is known to cause respiratory illnesses such as lung cancer or chronic obstructive 5

pulmonary disease. Therefore, individuals with severe mental illness who smoke are a high-risk population for contracting COVID-19 and experiencing significant respiratory distress due to the virus.

Large increase in psychological distress due to COVID-19 Almost 14% of Americans reported symptoms of serious psychological distress in April 2020 during the peak of the coronavirus pandemic, according to new research published in June from researchers from Johns Hopkins University published . This represents a 3.5-fold increase compared to the same time period in 2018 when only 3.9% of Americans reported these symptoms.

Serious psychological distress is not severe mental illness, but rather is a measurable research construct defined as mental health problems severe enough to cause moderate to severe impairment.

However, the results indicate there will be a growing mental health treatment need in this country, which has significant implications for over-burdening an already strained mental health treatment system in the United States.

As we look to the future, the Treatment Advocacy Center believes that we can help by maintaining a shared community for individuals with severe mental illness and their families, both as we navigate the COVID-19 pandemic and beyond. Sharing information and research into severe mental illness can help increase our understanding of the development and treatments of these disorders and reducing suffering for those inflicted. To receive the latest research developments once a week in your inbox, sign-up for our research blog Research Weekly at www.treatmentadvocacycenter. org/stay-informed.

Grading the States Gets an Upgrade I

n September, Treatment Advocacy Center released our 2020 update of Grading the States: An Analysis of U.S. Psychiatric Treatment Laws, an assessment of each state’s civil commitment laws and the findings drawn from the analysis. In it, we analyzed whether an individual in a particular state who needs involuntary evaluation or treatment can receive it in a timely fashion, for sufficient duration and in a manner that enables and promotes long-term wellbeing.

DISTRIBUTION OF STATE GRADES

We found that on some issues, states are close to universal use of recommended best practices identified in our policy recommendations.

• A robust majority of states authorize an emergency psychiatric hold of at least 72 hours for evaluation and crisis care • Only a small number of states require that danger to self or danger to others be imminent to qualify for hospitalization • Nearly all states recognize a person’s failure to meet basic needs (such as food, clothing and shelter) due to mental illness as a basis for intervention • All but three states have laws that authorize civil commitment on an outpatient basis But we also identified many states whose criteria have not been updated for many years, whose laws create needless barriers to treatment for people with severe mental illness, and whose procedures are confusing or vague, making them even more difficult to navigate for families and practitioners alike.

As with prior releases of the report, we focused on one essential element of our

public mental health system: involuntary treatment laws. Implementation, quality of care, budget prioritization and the number of available beds are essential factors to look at in examining the efficacy of a state’s continuum of care. However, in keeping with Treatment Advocacy Center’s mission and our belief that reform of treatment laws is at the root of systemic improvement, Grading the States 6

focuses on each state’s current statutes and what is theoretically authorized or prohibited by them.

Improving and modernizing treatment laws is something any state can do immediately, even when the funding necessary to solve other problems is scarce. Grading the States provides a detailed blueprint to follow and empowers advocates to push for positive change.

FINDINGS FROM

GRADING THE STATES • Ten states earned an “A” grade, while eight received an “F”.

• Minnesota achieved the highest combined score, with 97 out of 100 points. Maryland received the lowest combined score, with 18 out of 100.

• Six states (Alabama, Delaware, Georgia, Oklahoma, Pennsylvania and Tennessee) still have an outdated requirement that harm to self or others be imminent for a person to qualify for inpatient commitment, and seven (Georgia, Ohio, Oklahoma, Oregon, Rhode Island, Wisconsin and Wyoming) require harm from failing to meet basic needs to be imminent to intervene.

• Five state laws contain no path to civil commitment for those who cannot meet their basic needs due to mental illness (Alabama, Delaware, District of Columbia, Maryland and New York).

• Three states still have no law allowing civil commitment to occur on an outpatient basis (AOT) (Connecticut, Maryland and Massachusetts).

• Tennessee’s AOT law is the only one written to prevent its use as an alternative to hospitalization.

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A MAJOR DEVELOPMENT FOR LAURA’S LAW LAURA’S LAW, California’s version of AOT, received a major upgrade this legislative session with the passage of AB 1976. The bill, introduced

by Assemblyperson Susan Eggman, addressed a major short-coming of the original legislation. While only three states have no law permitting AOT, until AB 1976 passed millions of Californians likewise had no access to AOT. When it passed in 2002, Laura’s Law contained a legislative “poison pill,” requiring the board of supervisors in each of California’s 58 counties to pass an ordinance affirmatively adopting the law before being able to create a program.

The sunset provision has officially been removed, making Laura’s Law a permanent tool available for Californians.

This statutory barrier stood in the way of widespread AOT availability for many years. After steady growth in the number of programs and positive results for enrolled citizens with severe mental illness, in 2020 the time was finally ripe to push for full access for all Californians.

This session, AB 1976 sailed through the assembly, with broad bipartisan support.

Importantly, the law will now require counties to opt out of AOT – and justify the decision to do so in writing. Counties are further empowered to work collaboratively with other counties to create programs.

The sunset provision has officially been removed, making Laura’s Law a permanent tool available for Californians. AOT in California will no longer be unavailable based solely on county of residence.

Laura’s Law is here to stay!

Assisted Outpatient Treatment Saved My Life

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was a teenager when I was diagnosed with bipolar disorder. What happened next was almost 15 years of failed medications, multiple hospitalizations and unnecessary interactions with police, FBI and Secret Service.

My mental illness affected every part of my life. Suffering from paranoia and rapid cycling bipolar disorder symptoms I dropped out of high school. My relationships disintegrated. I was given every kind of medication that could be given to a person with mental illness: antidepressants, SSRIs, anti-psychotics—nothing worked. So, I self-medicated with drugs and alcohol, and eventually decided to enter rehab.

I was arrested for a nonviolent offense in 2009 and was sent to jail. I was in held there for 30 days while in the worst state of mind I have ever experienced. The few medications they had in the jail were medicines that I had already tried without any lasting success.

I was making the guards and inmates nervous, so they moved me to me to a sparse cell with one bed, one sink and one toilet.

I was only allowed to see my parents once during that entire ordeal, though a thick glass window.

Eventually, I was transferred from the jail to a hospital and then I got to go into an Assisted Outpatient Treatment (AOT) program. The AOT program offered an innovative solution to the problems born from my mental illness. It gave me a team—a judge, a social worker, a psychiatrist, a nurse and others—to support me.

It was the first time in my struggle with my mental illness that I was able to look towards the future. I lived in a group home that, while it wasn’t perfect, ensured that someone was holding me accountable 24/7.

I was able to stabilize and went home to live with my parents, but in 2011 my psych meds stopped working and I had to be hospitalized again. This would be my third and final hospitalization. A psychiatrist looked at the long list of medications that I had tried and that had failed. Doctors had prescribed me everything—except clozapine. So, she put me on a low dose of clozapine and two weeks later, my delusions and hallucinations went away. I went from taking five to eight medications per day,

By Eric Smith

to just needing one psychiatric medication.

Clozapine is still working for me, almost a decade later.

I went through another 12-month AOT program after that hospitalization and was able to turn my life around. I graduated magna cum laude with a degree in psychology from University of Texas at San Antonio and I am now a graduate student training to become a professional advocate and mental health expert.

I want to pinch myself when I think about how far I have come. I was a high school dropout who is now in graduate school.

Looking back, I know that I wouldn’t be where I am today without the help of AOT and my treatment team. AOT saved me from the criminal justice system and from insanity.

AOT saved my life.

It’s been a long journey since my initial diagnoses when I was a teenager. My life is so different from what my parents feared it would be in those early years.

I’ve received glowing letters from my professors and graduated in the top 10% of my class. I’ve been able to go to Washington, D.C. to meet with a member of the congressional mental health caucus to champion additional support for AOT. I’ve spoken to Senator Kamala Harris’ deputy chief of staff and have communicated with Senator Cory Booker and his policy team about AOT and SMI. I’ve also worked closely with the Treatment Advocacy Center as a consultant on a white paper about AOT and traveled with the organization to national conferences to tell my story.

AOT allowed me to find my calling in policy advocacy. Being an advocate is a lot of work, but it doesn’t feel like work—it feels like home. I’m doing what I was meant to do. I want to make sure the story I lived and the horrible things my family had to go through because of my mental illness weren’t all for nothing.

If you take anything away from my journey, it should be that serious mental illness is not something that can be solved by the criminal justice system. Civil court proceedings and programs like AOT are the best ways to help people.

Eric Smith is a mental health advocate, public speaker on matters of mental illness, and graduate student.

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The Puglisit: continued from page 1

Dr. E. Fuller Torrey with the late D.J. Jaffe

that schizophrenia was caused by bad mothering, bad parenting, a lack of understanding of what caused it and generally a lack of interest in the disease,” said Dr. Torrey.

His sister’s illness led directly to Dr. Torrey’s interest in schizophrenia research, but he had always wanted to study the brain. “When I decided to study psychiatry, I decided to do it because the brain seemed like the most interesting part of the body. The rest of the body looked pretty dull, especially the heart and the liver. But the brain looked like Alaska – the frontier. It looked like that’s where things would happen in my lifetime.

“If you wanted to be a well-known psychiatrist, you certainly wouldn’t go into schizophrenia research at that time. It would be considered to be a dead end.”

Dr. Torrey never set out to be a wellknown psychiatrist; he just wanted to improve treatment for people with severe mental illness. According to his friend and founding Treatment Advocacy Center board member DJ Jaffe, “Dr. Torrey could have spent his life making hundreds of thousands of dollars doing couch therapy on the Upper West Side for the rich and worried.”

Instead, Dr. Torrey wanted to help the underserved and forgotten population: the seriously mentally ill. That meant taking on the NIMH. Dr. Torrey’s battle with NIMH began in September of 1970. He started work

there as a special administrative assistant, and by his second week he was on the verge of being fired.

He espoused the unpopular belief that because psychiatrists were one of two medical specialties receiving federal funding, they should be obligated to pay back the communities who need the help most. “There was a shortage of psychiatrist in rural and underserved areas,” he explained. “Since psychiatrists were being trained with federal funds, they should have some type of payback obligation, to payback services in high need areas.”

A succession of department heads were in and out of the director’s office during Dr. Torrey’s first year trying to get him fired. Each of them failed, and Dr. Torrey continued his work at NIMH for another five years.

In 1997, he published “Out of the Shadows: Confronting America’s Mental Illness Crisis,” a book that highlighted the underserved communities with severe mental illness that had been failed by our country’s broken mental health care system.

After reaching his book, the late Vada Stanley approached Dr. Torrey, asking him what they could do people who need treatment for severe mental illness.

Together, they concluded that advocacy was necessary to improve access to treatment for people with severe mental illness.

A year later, the Treatment Advocacy Center was born.

Ever since 1998, Torrey and Treatment Advocacy Center’s most consistent adversary has been the NIMH. The debut issue of Catalyst included an article titled “Refusing to Settle for Pigeon Research,” decrying how the agency funds as many research grants for the study of pigeons as it funds to study the clinical or treatment aspects of manic-depressive illness. It closes by encouraging readers to call their representatives in Congress and tell them “not to let NIMH go to the birds!”

While not everyone has subscribed to Dr. Torrey’s brand of outspoken advocacy, many mental advocates regard him as a mentor, and credit him with bringing up the next generation.

While Dr. Torrey was an adviser to the National Alliance on Mental Illness (NAMI), he would bestow a fellow outspoken advocate with an award of his own creation at the group’s annual conference.

Jaffe recalled that Dr. Torrey would take the stage wearing a lifelike wolf mask. In front of 2,000 mental health advocates, Dr. Torrey would present the “Wolf Award” to an individual who had been shunned for their aggressive advocacy on behalf of those with severe mental illness.

Jaffe, a one-time recipient of the Wolf Award himself, said the award was one of many ways Dr. Torrey has encouraged and motivated outspoken advocates to keep fighting. “You feel happier, more enlightened and more vigilant in his presence,” said Jaffe.

Dr. Torrey may once have felt like lone wolf in his career, but he is clearly no longer alone.

“It is rare in life to come across an individual who has had such a direct, positive effect on so many lives. He is a beacon of hope guiding us on this most difficult journey,” said fellow advocate Linda Harris Mimms.

“I don’t think I’ve done anything that unusual. I’ve tried to improve the profession; I’ve tried to improve the treatment of people not getting good treatment.

When I became a doctor, this is just part of it. So, for me, it’s not a big deal,” said Dr. Torrey. Hearing this, Barbara Torrey interjects. “Not everyone writes over 20 continued on page 10

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DONOR SPOTLIGHT

Questions and answers with Evelyn Burton By: Caroline Nesbit, Treatment Advocacy Center intern

EVELYN BURTON is a Maryland advocate and a member of the Treatment Advocacy Center Board of Directors, who has devoted more than 20 years to severe and persistent mental illness. This interview has been edited for length.

Read the full version at www.treatmentadvocacycenter.org.

legal barriers especially, and barriers in general, to treatment to people with the most serious mental illness. Since TAC focuses pretty much exclusively on barriers to treatment with mental illness, they can be much more effective in that arena, especially in terms of the legal barriers – nobody else really focuses on that. So that can have a huge impact on the treatment that people with serious mental illness can get.

Q: Why did you get involved with mental health advocacy?

Burton: I got interested in mental illness because of a family member that came down with mental illness. My late husband and another relative had bipolar disorder. At that point, I became familiar with psychiatric hospitals and police and all sorts of things that people with serious mental illness encounter. I think – partly because my relative wasn’t able to get the services they needed, and I felt things needed to change.

Q: What is your advice to those looking to start advocating for people with severe mental illness?

Burton: I think my advice would be to join an advocacy organization because, if you’re with an organization, you’re taken much more seriously than just as an individual. Not that an individual can’t do advocacy, I just think it’s much more effective when you’re a part of an organization. I sort of learned from that if you want to be listened to or taken more seriously, then individual voices are good if they help strengthen the case but testifying on behalf of an organization carries more weight. And so that’s what I would advise people to do, is not do it on their own but work with an advocacy organization whose beliefs they agree with, that can join many voices to make themselves heard more.

Q: What does successful advocacy look like?

Burton: I think the best advocacy is when all these different, various groups can work together: the families the judges, the lobbyists, the doctors. The more groups you can have working together, the more effective it is.

But sometimes it takes one individual to get it started.

I’ve been amazed how much I’ve been able to get passed in the legislature. Just being the initial spark, so to speak.

I certainly haven’t done it all by myself, and I don’t think I could – just one person – I don’t think I could, but one person can get other people doing things and organized and getting groups together. So never discount the individual.

Q: Do you have a motto that you live by?

Burton: Yes in a way, it’s a funny story. I had a sponsor [for a bill] and they backed out because of other advocates that opposed it. So I was desperately scrambling for a new sponsor. So I went to this one legislator that I had known for a long time who I knew was not afraid to stand up to other organizations. And when I went to his office, he had a cartoon taped to the outside of his door. And it was a quote

by Churchill that said “You’ve got enemies? Good. That means you stood up for something in your life.”

Q: Why do you think Treatment Advocacy Center’s work is crucial today?

Burton: Well I think TAC’s work is especially crucial today but has always been ever since it was founded. Because they are the only organization that really focuses exclusively on the

The Puglisit: continued from page 9

books in their lifetime, Fuller.”

At 82, Dr. Torrey’s scholarly work and criticism of NIMH continue apace. Often the two are inextricably linked.

He recently submitted a paper to the peer-reviewed journal PLOS ONE, co-written with TAC Board President Michael Knable and psychiatrist Dr. A.

John Rush, titled “Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH.” When asked about the prospect of retiring, Dr. Torrey demurs. “That’s nice for some people. What would I do, golf?” No, there’s too much fight left in him to retire.

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Sure, his garden is a lovely place to relax.

But if you’re Dr. Torrey, it’s also the perfect place to write about the failures of NIMH.

Emily Kubera is communications and development manager at Treatment Advocacy Center.

Ready to Launch Learning Network Brings AOT Programs Together

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programs scrambling to adapt to the challenges of conducting court and serving vulnerable individuals under shutdown conditions. By mid-April, the AOTLN was ready to launch. Today it’s in full swing, with over 300 individual members and growing.

Currently the AOTLN offers monthly interactive webinars, regular news and information bulletins, and a rotating set of discussion groups based on AOT program role, each holding regular chats on Zoom. There are discussion groups for judges and other hearing officers; clinicians and case managers; “AOT monitors” who serve as liaisons between the court and treatment team; and “AOT champions” who work from inside or outside the system to marshal critical support for AOT. With input from members, the AOTLN will continue to grow in new and exciting directions.

If you are involved in operating or advocating for an AOT program in your community and have not yet joined the AOTLN, please do! The greater the range of roles and perspectives represented in the network, the richer the experience will be for all involved. To join, email us at aot@treatmentadvocacycenter.org.

t is easy to list the ways our lives have been adversely impacted

by COVID-19. While any positives are small in comparison, there have been unexpected benefits for many of us in slowing down the pace of everyday life.

Certainly that has been the case for the Treatment Advocacy Center’s AOT Implementation Team, who, pre-COVID, spent much of their time traveling around the country providing technical assistance to AOT programs at every stage of development.

For years, the team has talked about how impactful would be to establish a national network of AOT practitioners, linking programs to one another to share effective strategies and crowd-source solutions to inevitable challenges. We dreamed of creating a far-flung community out of all the amazing individual AOT programs we have had the privilege to work with. But there never seemed to be enough hours in the day to make it happen.

Until there were.

With the team grounded in March, we quickly recognized that the time for an “AOT Learning Network” had arrived. Indeed, the need for it suddenly seemed greater than ever, with so many AOT

AOT Hearings in the Time of COVID • Use COVID as an entry point for important conversations.

For instance: o Remind participants about the importance of wearing masks, social distancing, self-care, etc. o Ask participants if the income they need to stay safe and well has been disrupted by COVID. • If a participant shares that COVID conditions are causing them stress or feelings of isolation: o Hold status conferences more frequently. o Ask them to show you their artwork, play their instrument, read their poem, etc. o Work with treatment team to arrange for art project materials to be delivered to home. o Assign “homework” between status conferences. Ask the treatment team for ideas. o Send encouraging notes.

During their AOTLN Discussion Group in August, AOT judges from across the country shared their experiences adapting to the COVID-related suspension of live court hearings. Here are some of the suggestions that surfaced on how to forge personal connections with program participants via video conferencing: • Avoid having multiple people share a device at one time.

This may require the caseworker to hand over their phone to the AOT participant and step away.

• Look directly into the camera and remind others to do the same.

• Take off your mask and have others do the same.

Again, this may require the caseworker to step away from the AOT participant.

• Don’t wear the robe.

Let participants see you in your real-life environment.

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