Catalyst Spring 2021

Personally Speaking

Dual Diagnosis

Georgia Eyes Reforms

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

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SPRING 2021

A NEW LEADER AT THE HELM

Questions and answers with Treatment Advocacy Center’s Acting Executive Director Lisa Dailey

By Grace Miller Photo by Lacey Johnson

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REATMENT ADVOCACY CENTER experienced a new beginning this year as longtime mental health advocate, experienced lawyer and family member Lisa Dailey stepped up to fulfill the role of acting executive director.

Dailey began working at Treatment Advocacy Center in 2015, having spent the previous 15 years as a trial attorney working in the areas of civil litigation, civil liberties, human rights and asylum. Dailey became familiar with the work of founder Dr. E. Fuller Torrey in college, and when her sister experienced a psychotic break at the age of 20, Dailey stumbled across the Treatment Advocacy Center.

Compared to other organizations speaking on these issues, Dailey said, Treatment Advocacy Center was the “only group that talked about mental illness in a way that mirrored my actual experience.”

Dailey began her career with Treatment Advocacy Center as a legislative and policy counsel before being promoted to director of advocacy. Now, Dailey will continue her journey with Treatment Advocacy Center to better the lives of those with severe mental illness (SMI) – an issue she said has impacted every aspect of her life.

Acting Executive Director Lisa Dailey at Treatment Advocacy Center headquarters in Arlington, Va.

Below are highlights from an interview with Dailey about her vision for the organization moving forward and her passion for helping families and individuals coping with SMI.

Q: How does it feel to be named acting executive director?

Dailey: I’m really excited.

With the attention that is being focused on serious mental illness at a kind of unprecedented level, it seems like the organization is really at the brink of a big explosion into prominence, building on some of our recent achievements. We’re starting to get people in power to

understand why it’s important to focus on this segment of the continuum of people with mental illness. And that’s really exciting. I have a lot of ideas that I’m interested in working with the team to develop, and we have a great group of people. It’s a very passionate group of people, and it’s always really exciting to work with people who care about the issue as much as I do. continued on page 2

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MESSAGE FROM THE ACTING EXECUTIVE DIRECTOR

A Time of New Beginnings

This new position, created in memory of our friend and former board member DJ Jaffe, will allow Treatment Advocacy Center to better organize and execute grassroots advocacy in specific communities in need of better outreach and representation in the advocacy world, creating direct lines of communication with local advocates who are working to better the lives of people with severe mental illness.

Having worked closely with Sabah on the Advocacy team, I know she will bring the same empathy and heart to this role that she brings to everything she does at Treatment Advocacy Center, and I couldn’t be more excited to see what she will accomplish.

Also in March, our Office of Research and Public Affairs produced an evidence brief analyzing more than 150 separate sources of existing research on co-occurring severe mental illness and substance abuse disorders (p. 8). ORPA also collaborated with the Assisted Outpatient Treatment Implementation Team to host an interactive workshop at the annual conference of the Global Law Enforcement and Public Health Association (p. 6), showcasing our work and our talented professionals to an international audience.

Finally, I hope that you will read a moving personal essay by mental health blogger Elsie Ramsey (p. 11), who shares that writing about her family member’s bipolar diagnosis has helped her to manage and find meaning in her depression.

Elsie’s story is a lesson to us all about how even the most difficult situations can be opportunities for generative growth.

In that spirit, please enjoy the spring 2021 issue of Catalyst.

Thank you, as always, for your generous support of our work here at the Treatment Advocacy Center. Without you, none of our success would be possible.

As I sit down to write this column, winter has released its grip on the east coast, vaccinations are ramping up for the Covid-19 pandemic, and the first signs of spring are emerging, bringing with them a sense of relief and renewal.

Since the last issue of Catalyst, Treatment Advocacy Center has experienced several new beginnings of our own.

In December, we joined 13 other major mental health organizations to introduce a new unified vision for addressing this country’s urgent mental health crisis, a seven-pillar roadmap for accelerating effective mental health as America recovers from the pandemic.

By lending our voice to this effort, we were able to secure the inclusion of a number of priorities for those affected by SMI, including affirmation that a full continuum of care must include inpatient treatment for acute needs, as well as emergency and crisis response services tailored to the needs of those who are the most severely ill.

In January, we bid a fond farewell to our longtime, former executive director, John Snook, who joined the National Association for Behavioral Healthcare as director of government relations and strategic initiatives.

That same month, at the invitation of the Board of Directors, I began serving in my current role as acting executive director.

For the cover of this issue of Catalyst, I discuss my journey to Treatment Advocacy Center and my vision for the organization in a Q&A with Communications intern Grace Miller.

In March, we welcomed our own Legislative and Policy Counsel Sabah Muhammad into her new role as Treatment Advocacy Center’s inaugural DJ Jaffe advocate (p. 4).

Sincerely,

Q&A with Lisa Dailey, continued from page 1

Q: What are you hoping to accomplish in your time as the acting executive director of Treatment Advocacy Center?

Dailey: My first priority is to keep our initiatives that are currently underway moving forward and to expand the abilities of our various departments. I really see the administrative side and the executive side of things to be about providing the support that the different departments need in order to do their

best work. We’ve got really skilled department heads, so I think the first set of priorities that I have is to get up to speed on what they would like to accomplish.

One of the very exciting priorities we have is the creation of the advocacy position honoring DJ Jaffe, a former board member of the Treatment Advocacy Center and a mental illness advocate who died in August of 2020.

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We have done grassroots organizing and grassroots advocacy for years in many different ways, but this is an opportunity for us to really focus on what other kinds of grassroots advocacy we can do. We hope to expand people’s knowledge of what we do and the importance of what we do and to get more people who are affected by our issues on board with us to help change the laws in their states. continued on page 10

By Dr. E. Fuller Torrey

By Dr. E. Fuller Torrey

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ats can make nice pets and are safe if they are kept exclusively inside.

However, cats that are allowed to go outside may become infected with a protozoan parasite, Toxoplasma gondii, which can be transmitted to humans in a variety of ways.

Most people who become infected have no symptoms but a small number develop eye disease and pregnant women may pass it congenitally to their developing fetus. That is why pregnant women are told not to change the cat litter.

Toxoplasmosis can also cause severe problems for people who are immunocompromised such as those with HIV-AIDS, organ transplants, or some cancer treatments.

As part of our research program on infectious agents as possible causes of some cases of schizophrenia and bipolar disorder, SMRI has been investigating Toxoplasma gondii in recent years, especially in Dr. Yolken’s Stanley Laboratory at Johns Hopkins University.

Here are some of the things that we have learned: • It has been known for many years that Toxoplasma gondii can cause psychotic symptoms. One psychiatrist reported that “the literature not infrequently focuses attention on psychoses with schizophrenia or schizophreniform features that accompany chronic toxoplasmosis.” Psychotic symptoms have also been commonly seen in patients with HIV-AIDS who develop toxoplasma encephalitis. Fortunately, this is now seen less commonly since the development of effective AIDS treatment.

• Many studies have also reported that individuals with schizophrenia who are also infected with toxoplasmosis have more severe symptoms than those who are not also infected. One study reported

that they had been hospitalized longer and were on higher doses of medication.

Another study found that those infected were treatment resistant and a third study reported that they had more negative symptoms.

• Another line of research has been to ascertain the Toxoplasma gondii infection rate among individuals with schizophrenia compared to controls. Approximately 100 such studies have been done with the vast majority of them reporting a significant association. For example, a meta-analysis we published of 38 such studies reported an odds ratio of 2.7; in other words, the person who has been infected with toxoplasmosis is 2.7 times more likely to have schizophrenia compared to a person who has not been infected.

• Other antibody studies have been carried out to ascertain whether a past 3

infection with toxoplasmosis, as assessed by having antibodies, can predict who is more likely to develop psychosis. Five studies have assessed antibodies in women before they gave birth or in their newborns; four of the studies reported that the infected newborns were significantly more likely to later develop schizophrenia or other psychoses.

Such studies are continuing in Dr. Yolken’s laboratory and elsewhere in the world.

The goal of course is to develop better treatments. Several treatment trials have been tried for schizophrenia using drugs known to be effective against toxoplasmosis but they have not been successful.

The reason, we suspect, is that the drugs do not reach the cyst form of the toxoplasmosis in the brain, which is the root of the problem. This is the kind of problem that NIMH should be working on but they have no interest in such clinical problems. Their only interest is in doing basic research.

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.

‘Our stories matter’ Treatment Advocacy Center’s Sabah Muhammad chosen to serve as inaugural DJ Jaffe advocate

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reatment Advocacy Center announced on March 8 that Legislative and Policy Counsel Sabah Muhammad was chosen to serve as the organization’s inaugural DJ Jaffe advocate.

Shortly after the death of our former board member and friend DJ Jaffe last August, we announced our intention to create a new advocacy position to honor Jaffe’s legacy as a tireless mental health advocate and champion for families.

“I’m so honored to accept this new role where I plan to expand TAC’s outreach and be for so many people who DJ Jaffe was for me,” said Muhammad, who began her new role in March. “DJ let me know that I was heard and that my family was not alone. I learned that everyday advocacy is a lifestyle. Living with severe mental illness can be harrowing. I want all families to know that our stories matter, especially Black families.”

Muhammad, a licensed attorney and former Georgia public defender, joined Treatment Advocacy Center in 2019 as legislative and policy counsel, where she works to improve civil commitment laws and to promote evidence-based policies at the state and federal level that positively affect those with severe mental illness.

This new position allows Treatment Advocacy Center to better organize and execute grassroots advocacy in specific communities in need of better outreach and representation in the advocacy world,

SABAH MUHAMMAD creating direct lines of communication with local advocates who are working to better the lives of individuals with and affected by severe mental illness.

In her new role, Muhammad works across departments to coordinate education and outreach campaigns in order to help Treatment Advocacy Center better serve individuals and families of color affected by severe mental illness.

The DJ Jaffe advocate position is endowed by Treatment Advocacy Center founder Dr. E. Fuller Torrey and wife Barbara Torrey.

“I’m so pleased that Sabah Muhammad agreed to serve as the inaugural DJ Jaffe advocate at the Treatment Advocacy Center,” Dr. E. Fuller Torrey said. “Sabah came to the Treatment Advocacy Center 4

through her personal relationship to DJ, and I know that my late friend would be proud and honored that she will perform outreach to families of color affected by severe mental illness in this new role designed to carry on his legacy of grassroots mental health advocacy.”

A former Madison Avenue advertising executive turned crusader for the mentally ill, Jaffe played a critical role in the passage of Kendra’s Law in New York, which authorizes courts to order outpatient psychiatric treatment for people who pose a danger to themselves or others. The law became a model for assisted outpatient treatment programs across the country. Dr. E. Fuller Torrey described Jaffe as “the single most effective advocate I worked with.”

“Sabah approaches everything she does with empathy and heart. I can’t think of anyone better suited to serve in this role,” said Lisa Dailey, Treatment Advocacy Center’s acting executive director.

“She will lift up the voices of individuals and families struggling with severe mental illness by seeking and listening to their experiences in all of their complexity, but most importantly by providing a platform to tell these stories.

If we want to truly solve problems, our work must be informed by as many voices as possible. This is the best way to honor DJ, whose compassion for the suffering of families failed by our broken treatment system knew no bounds.”

A ‘crusader’ for the forgotten and neglected

Remembering Treatment Advocacy Center board member

Gerald R. Tarutis

By Carla Jacobs

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ERALD R.TARUTIS, a founding board member of the Treatment Advocacy Center, died on Feb. 28, six hours after suffering a fall at his Seattle home.

Gerry was instrumental in the founding of the Treatment Advocacy Center, guiding the organization’s incorporation in 1998. He went on to serve as a member of the Board of Directors for nearly two decades, until 2017. Additionally, he served as a former national board member of NAMI: National Alliance on Mental Illness and its local Seattle affiliate.

His parents, Ralph Gerald Tarutis and Newfoundland-born Martha White Tarutis, were both registered nurses who worked in state psychiatric hospitals and in community care. Their professional careers and political beliefs made strong impressions on Gerry.

He practiced health law for the past 50 years, most recently with Taritus Legal Solutions, the Seattle-based law firm he founded. At the time of his death, Gerry also held leadership positions with the American Bar Association and Washington State Bar Association.

Throughout his life, Gerry was a crusader. A photo of a young Gerry in his high school yearbook shows him with his trademark laser focus beside a caption predicting his future career as a successful attorney.

Throughout his college years at the University of Maryland, Gerry spent his summers campaigning and working for Democratic candidates, including the late Maryland Congressman Goodloe Byron, who tapped him to be a legislative assistant in his Annapolis district office. A newspaper article from the time quotes Byron as saying he could always depend on Gerry to get things done.

system. The regional hospital in which the children in that case were abandoned was shuttered and more community treatment options made available. Today, the Treatment Advocacy Center continues to work to improve Georgia’s mental health system (see p. 9).

At board meetings, Gerry was a quiet and studious presence, taking notes until his ears zeroed in on something someone

...when he did speak, everybody listened to what he had to say, and he was usually right.

After receiving his J.D. from the University of Maryland and passing the Maryland Bar, Gerry served in the Peace Corps while stationed in Monrovia, Liberia.

After his return from the Peace Corps, Gerry became a licensed attorney in Washington and Georgia.

In Georgia, he brought several cases to overturn the state’s practice of committing people deemed incompetent to stand trial indefinitely without the benefit of due process. He also brought the seminal class-action case of J.R. and J.L. v. Parham, representing thousands of children who were dumped in a Georgia state mental hospital with horrific living conditions.

J.R. and J.L.’s case led to the gradual improvement of Georgia’s mental health 5

else said. As a result, when he did speak, everybody listened to what he had to say, and he was usually right. In the social hour following board meetings, he showed us another side of his personality, regaling us with his mordant wit and contagious, baritone laugh.

He is survived by his son, Mark Tarutis, a student in Portland, Ore. All of us who served on the Treatment Advocacy Center Board of Directors with Gerry join in mourning his loss. We are better people and a better organization for having benefited so long from his wisdom, humor and friendship.

Carla Jacobs is a former member of the Treatment Advocacy Center Board of Directors.

reatment Advocacy Center hosted workshop at The Global Law Enforcement Public Health Association international onference

From Policy to Practice Treatment Advocacy Center hosted a workshop at The Global Law Enforcement Public Health Association international conference

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he Global Law Enforcement Public Health Association (GLEPHA) hosted a virtual international conference on March 23. Due to Director of Research Elizabeth Sinclair Hancq’s active membership with GLEPHA, the Treatment Advocacy Center was invited to host a workshop at the conference, which had originally been scheduled to take place in Philadelphia.

Two members of the Assisted Outpatient Treatment Implementation Team, Amy Lukes and Betsy Johnson, collaborated with Hancq on the workshop. Titled “From Policy to Practice: Law Enforcement, Advocacy and Psychiatric Crisis Response in the Philadelphia Area,” the workshop’s goal was to give participants a better understanding of what influences advance best practices in community and courtbased programs that are designed to reduce law enforcement response to mental health crises. Those influences vary from data and research to media attention to community advocacy.

Attendees heard directly from researchers, advocates, practitioners and decision-makers, including the sitting district attorney of Bucks County, Matt Weintraub, and Fred Harran, the director of public safety for Bensalem Township Police Department in Bucks County, Pa. The workshop opened with a video interview with mental health advocate and Bucks County, Pa. resident Martha Stringer. In the video, Stringer talked about the progression of her daughter Kimberly’s bipolar disorder, her family’s difficult journey navigating the mental health and criminal justice systems, and how those experiences led her to become a community activist and strong proponent of implementing AOT programs in Pennsylvania.

“The lack of insight renders you incapable of making an informed and competent decision. And people who love you

From top to bottom, left to right: Brett Sholtis, Elizabeth Sinclair Hancq, H Sabah Muhammad and Eric Smith.

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should be able to step in and do that for you. With us not being able to get her help, it violates her civil rights for quality care. And it violates my civil rights as a parent to get her the care that I know she so desperately needs,” said Stringer.

Stringer’s interview was followed by a pre-recorded, interactive discussion moderated by WITF’s Transforming Health reporter Brett Sholtis, in which community leaders and other experts, including Treatment Advocacy Center Legislative and Policy Counsel Sabah Muhamad, respond to a mock mental health crisis.

The goal of the scenario was to examine what influences may have led to the recent decision in Bucks County, Pa. to implement a Mental Health Court and Crisis Center as a means to reduce law enforcement involvement in psychiatric crisis response. It also was meant to explore why those same influences have not been able to overcome reluctance to implement an assisted outpatient treatment program.

The vehicle involved Derek, a man in his late twenties with untreated schizophrenia who has been staying at an extended stay hotel in Bucks County, Pa. Derek is convinced that the CIA is sending him messages through his television and gets into a verbal altercation with the hotel clerk who decides to call the police.

Attendees saw how community leaders and other experts respond to Derek’s mental health crisis and received a helpful glimpse into how decision makers are influenced. A common theme was the need for Pennsylvania to begin implementing assisted outpatient treatment (AOT) programs. Although a law providing for AOT was enacted in the Commonwealth in 2018, not a single one of Pennsylvania’s 67 counties has implemented an AOT program, as Sholtis and other journalists have reported.

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Meeting people who live with serious mental illnesses has given me more compassion and sympathy for others.

”

“My thought as to the reason there is resistance [to implementing AOT in Pennsylvania] is because people don’t understand the concept of AOT,” said Texas Judge Oscar Kazen, who presides over an AOT program in his state, during the pre-recorded discussion. “It is not a court banging a gavel and sending someone to prison. It is not a judge ordering the caseworker to be there at three o’clock or else.

It is a mechanism to make sure [a person with SMI] isn’t a loss.

That Derek, for example in our scenario, should be treated with dignity and accord. And everybody should be held accountable to him.”

“I’m hopeful. I still remain hopeful that AOT can be a part of how we do things in Bucks County. Somebody has to be first in the state. The law is there. Why not Bucks County?” said DA Weintraub.

The workshop concluded with a live question and answer session following the mock mental health crisis scenario, during which attendees had the opportunity to engage directly with key program participants.

Sholtis, the reporter who moderated the panel discussion, reflected on how covering severe mental illness has made him more empathetic. “Meeting people who live with serious mental illnesses has given me more compassion and sympathy for others. I think people are far too quick to judge other people. When you realize that anyone really could be affected by an illness that will seriously affect their behavior, it is humbling in the real sense of the word.”

Hon. Oscar Kazen, DA Matt Weintraub, Fred Harran, Benjamin Barsky,

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Office of Research and Public Affairs releases new evidence brief on serious mental illness and co-occurring substance use disorders

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he Office of Research and Public Affairs released a new evidence brief, “Dual Diagnosis: Serious Mental Illness and Co-occurring Substance Use Disorders,” on March 19. The 38-page report addresses challenges for people whose severe mental illness is compounded by a substance use disorder and discusses how substance misuse can increase the barriers individuals face while living with a serious mental illness.

For example, people with co-occurring disorders are more vulnerable to becoming involved with the criminal justice system or experiencing homelessness and it is much more difficult for them to access the necessary treatment to address both disorders.

The authors analyzed more than 150 separate sources of prominent existing research, including the Substance Abuse and Mental Health Services Administration’s (SAMHSA) Mental Health Surveillance Study (MHSS), one of the most robust surveys of mental health facilities in the country.

Fortunately, evidence-based treatments to target concurrent substance use disorder and mental illness do exist. However, most individuals face substantial barriers to access quality treatment. This is due to the need for special considerations and more comprehensive treatment than what is typically needed for mental illness or substance use disorders.

“Policy solutions should better integrate mental health and substance use treatment systems, and increase the availability of such dual-disorder treatment programs,” conclude authors Elizabeth Sinclair Hancq, Kelli South and Molly Vencel.

AMONG THE REPORT’S KEY FINDINGS:  One in four people with serious mental illness also have a substance use disorder.  Only 12.7% of people with co-occurring serious mental illness and substance use disorders received any treatment for both conditions in 2019.  People with serious mental illness are more likely to smoke tobacco and misuse alcohol compared to those without mental illness.  Cannabis is one of the most common drugs used by people with serious mental illness. Almost 40% of individuals with serious mental illness used marijuana in 2019.  Individuals with co-occurring substance use disorder and serious mental illness are overrepresented in every part of the criminal justice system and are more likely to experience homelessness.

OFFICE OF RESEARCH & PUBLIC AFFAIRS

EVIDENCE BRIEF MARCH 2021

DUAL DIAGNOSIS: Serious Mental Illness and Co-Occurring Substance Use Disorders

By Elizabeth Sinclair Hancq, Kelli South & Molly Vencel

INTRODUCTION

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history of substance use is closer to a rule than an exception for people with severe mental illness.

Whether it is cigarette smoking and alcohol consumption or the use of illegal drugs like cocaine,

substance misuse and substance use disorders greatly impede treatment success in individuals with schizophrenia or bipolar disorder. Substance misuse among this already vulnerable population contributes to many of the negative consequences of nontreatment for people with severe mental illness, including criminal justice system involvement, homelessness, high prevalence of comorbid physical health conditions and suicide.

At any given moment, an estimated one in four people with a serious mental illness also struggle with a substance use disorder.

An individual is considered to have a substance use disorder when the use of alcohol or other drugs reaches such a level that it causes serious and significant impairments on the individual’s functioning and daily life (Table 1).1 The prevalence of co-occurring serious mental illness and substance use disorder grew by more than 1 million people in the United States between 2014 and 2019, a 40% increase compared to only a 4% increase in the US population.2 At any given moment, an estimated one in four people with a serious mental illness also struggle with a substance use disorder.3

HIGHLIGHTS | Only 12.7% of people with co-occurring serious mental illness and substance use disorders

received any treatment for both conditions in 2019. | People with serious mental illness are more likely to smoke tobacco and misuse alcohol

compared to those without mental illness. | Cannabis is one of the most common drugs used by people with serious mental illness. Almost

40% of individuals with serious mental illness used marijuana in 2019. | Individuals with co-occurring substance use disorder and serious mental illness are overrepresented

in every part of the criminal justice system and are more likely to experience homelessness.

[1]

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The full evidence brief is available to read and download on our website, under “Evidence and Research” in the “Background Papers” section.

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OFFICE OF RESEARCH & PUBLIC AFFAIRS :

Georgia Eyeing Key Reforms to Civil Commitment Law

The Georgia State Capitol

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he Georgia Behavioral Health Reform and Innovation Commission released a report in January outlining recommendations to improve access to treatment for people with severe mental illness.

The commission was formed to conduct a comprehensive review of the behavioral health system of care in Georgia. During the commission’s inaugural year, its five subcommittees held meetings and heard hours of expert testimony from the major interest groups and professionals in their fields. The first-year report is based on these findings.

Treatment Advocacy Center’s Policy Director Brian Stettin assisted the involuntary commitment subcommittee in developing its recommendations for the report. If signed into law, these recommendations would: • Fund and establish within Department of Behavioral Health and Developmental Disabilities (DBHDD) a multi-year grant

program to foster the creation of new county-level “assisted outpatient treatment” (AOT) programs across Georgia.

• Remove requirements that a tragic outcome be “imminent” before an individual in crisis can qualify for civil commitment for mental illness.

• Allow psychiatric deterioration as a basis for inpatient commitment.

Stettin drafted bill HB 590, which includes the recommendations by the involuntary commitment subcommittee. Rep. Don Hogan (R-District 179) has now introduced HB 590 in the Georgia House of Representatives. These proposed changes would improve access to timely and effective treatment for Georgians with severe mental illness, and allow families to help their loved ones before crisis.

The passage of HB 590 could be a big step forward for Georgia. We are seeing great progress in Georgia, and hope this is just the beginning.

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Q&A with Lisa Dailey, continued from page 2

Q: What are the biggest legislative priorities for 2021, and how can local advocates join the fight?

Dailey: At the federal level, our biggest priority is to continue the gains that have been made toward funding evidence-based programs like AOT and in removing specific barriers to care for those with SMI. This includes continuation of the SMI waiver for the IMD exclusion while pushing for a full repeal, as well as HIPAA reform. At the state level, we will prioritize legislation that improves state civil commitment laws, including for AOT, to ensure timely and effective access to care throughout the treatment continuum.

During the pandemic, we will also be particularly focused on ensuring that those with severe mental illness, who are so disproportionately at risk for both infection and de-prioritization, are not overlooked in policy and funding decisions.

Q: What is your personal connection to our issues?

Dailey: My younger sister was diagnosed with schizoaffective disorder when she was 20 years old. We spent years as a family grappling with a system that made no sense, yielded terrible outcomes and did not treat very serious medical conditions as medical conditions, or with even basic compassion.

I, like many, became an advocate when I saw how ludicrously inadequate our public mental health system is and what that means for those with or affected by severe mental illness.

Q: What does advocacy mean to you?

Dailey: Being an advocate to me, in the way that we use that word at Treatment Advocacy Center, is to address the fact that our system doesn’t work for the people that we’re trying to make it work for. And we do that by acting on behalf of individuals that we know are not well-served — that includes families and individuals affected by severe mental illness who are unable to get the help that they need and are often ignored by our treatment system.

You really have to study the system to understand where the problems are.

And if we can help our family members

or people who support the organization understand where things are going wrong and what needs to change, the Treatment Advocacy Center is providing a valuable service.

Q: A lot of the work that Treatment Advocacy Center does acknowledges different shortcomings and failures in the system. How do you stay positive while working for that change? Does the work ever feel hopeless?

Dailey: It never feels hopeless. It does sometimes feel really vast, because there are so many things that are wrong, and there are so many things that don’t work the way that they’re supposed to.

“At the state level, we will prioritize legislation that improves state civil commitment laws, including for AOT, to ensure timely and effective access to care throughout the treatment continuum.”

I would say that the thing that keeps you going in this kind of work is, first of all, you do occasionally have a really excellent success, where you can really put your finger on somebody getting a piece of information that they needed at a critical time, and it made a huge difference for their loved one, or for their family or for the individual. And that feels amazing, when you’re able to do that. Or when you see a law pass that you know is going to kick down one barrier that is keeping people from getting treatment.

When you can’t do that, though, I would say that what keeps you going is the fact that it’s enraging to look at some of these individual circumstances and realize that the bad outcome is the rule and not the exception. And that makes me furious. It makes all of us furious. And being furious is really motivating.

Q: How do you define the importance of TAC’s work?

Dailey: Over time, a lot of organizations 10

have become much more focused on the very big-tent approach toward mental health, as opposed to mental illness, which is fine. But what we’ve seen is that by focusing on the commonality of mental illness among the entire public, what ends up happening is that all of the focus and all of the funds and all of the efforts tend to go toward people who are voluntary, who seek help. It’s an underfunded system. It’s a system without enough staff, without enough psychiatrists, without enough hospital beds. So, what naturally happens is that the resources that are there go to the people who ask for help.

The reason that Treatment Advocacy Center is necessary, and will always be necessary, is because that leaves the people with the most severe conditions with nothing. And that has severe impacts on the individuals who are affected, their families, the public, everyone.

Mental illness is one of the only types of conditions where the people who are the most in need of care may not seek it out and may actively resist it.

So, as a result, somebody needs to be the voice for them and force the system to acknowledge that they are there, they need care and they deserve care.

And if they can’t do it for themselves, it has to be either family members or loved ones, or it has to be organizations like Treatment Advocacy Center that specifically focus on making sure that they are not ignored or overlooked.

Q: Are there misconceptions about Treatment Advocacy Center’s mission that you are hoping to dispel as its new leader?

Dailey: As Treatment Advocacy Center engages with collaborative workgroups and partnerships, we sometimes hear feedback from our supporters that they worry the organization will drift away from our commitment to those with the most severe illnesses.

I want to dispel this worry – no matter where our work takes us, our focus will always be on the needs of those with severe mental illnesses like schizophrenia and bipolar disorder. We take our role as a voice for families affected by severe mental illness very seriously.

Personally Speaking: The Author of My Own Story

By Elsie Ramsey

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Photo by Kristian Bradley

t has been three years But I counter with the truth: since I started talking and I have my sanity. writing openly about my Through writing and depression and life with a publishing, I’ve developed Bipolar 1 family member. the stamina to withstand vast ”It was an earth-shaking Being transparent about my fluctuations in my loved one’s realization: I’d been struggle has changed the behavior while maintaining putting my trust in rules of engagement in my my sense of self and a life an unreliable narrator conflict with mental illness. that makes me feel whole. all along!“ I discovered that by Hers is a familiar story—not talking only to therapists finding the right meds, and an inner circle for so resulting psychotic episodes long, I’d become a passive and 911 calls. My ongoing participant in my life. An fear that her condition will omniscient voice that worsen has added a layer of wasn’t my own narrated my anxiety to my depression. I thoughts, presenting facts selectively, driving at an agenda that lose sleep and weight when she’s not well. wasn’t mine.

My biggest fear is losing her. So I stand guard, keeping a It was an earth-shaking realization: I’d been putting my trust constant eye out for trouble. Although I’m not the author of her in an unreliable narrator all along! I grabbed the pen and haven’t story, I can tell it from my perspective, so that’s what I do. let go since.

Bipolar mania is extremely dangerous because it resists with There’s no changing the words that were already written on enormous force one’s awareness that they are ill. Such denial the page. My story was that of a young woman devastated by frustrates and infuriates me, as I’m sure it does for everyone who the emergence of her sibling’s bipolarity and her own depresloves someone with this illness. sion. A tragic ending loomed but I chose to write a different one. Bipolar disorder is a shape-shifting, pathological, dream I chose truth and vulnerability. At 35, I dramatically changed weaver. Bipolar tells its victims that they’re doing just fine, better course, taking a time out from New York to begin again. I discov- than fine actually. “You’re healed!” it says. ered what writers call “narrative control,” and claimed it.

Depression has never once tried that trick on me; it’s not that I did so by creating a website to give myself and others battling wily or creative. mood disorders a storytelling platform. Vulnerability replaced When my loved one professes great health, she’s at her most secrecy as I steadily built a body of work for myself and others. ill. That’s the horrible paradox of SMI: No doctor or loved one is In the process, I discovered new ways to measure success in a match for bipolar once it reaches such extremes. my life. One metric was my loved one making me laugh when You can’t treat the absence of something. she wasn’t ill. Another was simply being alive to tell more stories.

So, I keep putting words to these experiences, insisting on In the midst of all this growth, life got no easier. My father their presence in a world that wants to look away. The words, my died days after my 36th birthday and my bipolar loved one was own now, save me again and again. hospitalized shortly after in a fit of unprecedented mania. Bipolar Sometimes they’re all I have. It’s more than enough.

II became Bipolar I with psychotic features.

But I gripped my pen tightly and kept writing, even though my hand was shaking.

Elsie Ramsey is the founder of the website biggerthandepres Even now my old nemesis, the unreliable narrator, pops up to sion.com, an online community of people sharing their stories seize creative control. It says that I have nothing to show for all about lives lived with a mood disorder, and an advocate for the times when it took every ounce of energy I had just to keep normalizing conversations about mental illness in both our my head above water. professional and personal lives.

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