by Andy Arnowitz, Information & Resources Coordinator Copa Health

SMI Advocacy Guidelines Presentation Video – YouTube

This video is the presentation I did at the 2022 Mercy Care Connections Conference on highlights from the paper I wrote, “Advocacy Guidelines for Working With a SMI Clinic, or Others (How to Achieve the Desired Result).”  

And the paper is available to read, print or download at this link: 

Advocacy Guidelines for Working With a SMI Clinic, or Others (How to Achieve the Desired Result)

Please feel free to share this with anyone advocating in the SMI system.

With the goal of helping the very sickest people with mental illness, Josh Mozell has taken on Chick Arnold’s caseload — and his cause.

Chick Arnold, lead plaintiff in the Arnold v. Sarn class action lawsuit that claimed Maricopa County and the state of Arizona were failing people with serious mental illness, is shown at his Phoenix home on April 12, 2021. Photo by Brandon Quester | AZCIR

ACMI members are working to help spread stories to the public about our behavioral health system of care. Amy Silverman of Arizona Center for Investigative Reporting is doing a series of stories highlighting Arizona’s behavioral health history and ongoing issues.

by Amy Silverman October 20, 2021

Forty years later, legacy of Arnold v. Sarn lives on

Chick Arnold pulls out an old scrapbook packed with newspaper clippings, just in case he forgets anything.

At 74, Arnold has a shock of white hair and a sparkle reminiscent of Steve Martin. Tucked up against the Phoenix Mountain Preserve, his home is cheerful and modern, with a courtyard, high ceilings and brightly colored artwork that pops in the light of this warm spring morning. Arnold’s disposition is similarly sunny, even though he’s spent his career trying to help people whose lives are very dark. 

As he talks, the scrapbook unopened in his lap, it’s clear that Arnold remembers just about every detail of the last 40 years—particularly when it comes to his role as godfather of the state’s mental health care system. 

In 1981, Charles “Chick” Arnold was a young attorney working as Maricopa County’s public fiduciary, assigned to be the guardian for 600 vulnerable adults—the elderly, as well as people with serious mental illness and developmental disabilities. Arnold had a sister with a significant developmental disability and grew up knowing enough about the systems designed to protect these populations to understand that change was needed.

Mental illness—particularly the most chronic and severe cases—is difficult to treat. Matters of the brain have always been confounding, and often dismissed. For the most part, early societies treated mental illness as something other than medical. They looked for spiritual reasons, demons. Despite some scientific advances, to this day, treating mental illness is more art than science; doctors aren’t always sure why a medication works, and a diagnosis can change based on ephemeral elements like behavior. 

In the 1960s and 70s, the combination of media and government attention to both the dangers of institutionalization and the advances in the development of psychotropic drugs meant that it was no longer a given that a person with a diagnosis of schizophrenia or bipolar disorder would live out their years at a locked institution like the Arizona State Hospital

A state law was passed in 1970 requiring that only those who present a danger to themselves or others be housed at ASH, a collection of somewhat majestic-looking old buildings ringed by chain link and razor wire on Van Buren and 24th streets in the middle of Phoenix. The population dropped from 2,000 to 300 in less than a year as patients were released to the street, sometimes with little more than a bus pass and a month’s worth of medication.

Deinstitutionalization was a great idea that was not particularly well-executed in many places in the United States. Arizona was no exception. Out in the community, there was basically no case management system, no counseling, no housing program, no assistance with employment, no peer support.

In the late 1970s, Arnold and others successfully lobbied the legislature to pass a bill that, in essence, requires the state to provide these services to people with serious mental illness, with no cap on the cost. This was huge, particularly in a penny-pinching, libertarian state like Arizona. 

But change was slow. Then a man named John Goss dropped by to see Arnold. 

As Arnold describes him, Goss, who was in his early 40s, was a smart man, a former stockbroker from New York who’d had a mental breakdown and made his way to the Southwest, where he’d previously been a patient at the Arizona State Hospital. One of Arnold’s charges, he was now living in an unlicensed boarding home that was in terrible condition; it had burned down more than once. Goss walked the city, often stopping at Arnold’s office in the old courthouse in downtown Phoenix to say hello. 

On this particular visit, Goss told Arnold he’d read about the new law, and wanted to know why things hadn’t gotten better for him.  

“He nailed me,” Arnold recalls. 

So Arnold turned to the judicial branch of government, becoming the lead plaintiff in one of the state’s longest-running class action lawsuits and a household name in mental health circles. 

(The Sarn in Arnold v. Sarn is James Sarn, then the head of the state’s Department of Health Services.)

The Arizona Supreme Court upheld the case, but the branches of government continued to tangle for decades, as a court monitor conducted annual audits, documenting deficiencies and calling on the court to compel government to fix them. In 2012, with the state in financial crisis following the Great Recession, the court monitor and much of the program was suspended, replaced in 2014 with an agreement that ended the litigation and established guidelines for providing services. 

“Looking back on it, I think we were not enough. The constructs that were intended to be created, the housing opportunities, employment opportunities, the kind of respect piece that had been lacking from our system is still compromised. You know, dignity, respect, or honor serving people with disabilities in a non-patronizing way.”

CHICK ARNOLD

Will Humble was the director of the Arizona Department of Health Services at the time. He recalls advising then-Gov. Jan Brewer. 

“I told Brewer’s team, ‘Look, we can’t go anywhere with a court monitor,’” Humble says. “We’re in a horrible recession. We concede that we’re not going to get all needs met. We’re just going to keep the wheels on state government the best we can.’” 

It was a tough situation. During her time in the state legislature in the 1980s and 90s, Brewer was a champion of rights and better services for people with mental illness. She had a son who spent many years at the state hospital. As governor, she supported a Medicaid expansion that benefited people with SMI (serious mental illness), but she was criticized for dropping her focus on the mental health system. She gets mixed reviews for the decision to settle Arnold v. Sarn.

“They still could use a lot of help today, but we feel very accomplished by what we were able to accomplish,” Brewer told AZCIR this spring. 

“I just know that I worked really hard and I gave it all I could and I saved it. I saved the day and I believe that and I am proud of that.”

Arnold signed off on the settlement agreement. Now, he regrets not pushing harder. 

“Looking back on it, I think we were not enough,” he says. “The constructs that were intended to be created, the housing opportunities, employment opportunities, the kind of respect piece that had been lacking from our system is still compromised. You know, dignity, respect, or honor serving people with disabilities in a non-patronizing way.”

Will Humble was the director of the Arizona Department of Health Services at the time. He recalls advising then-Gov. Jan Brewer. 

“I told Brewer’s team, ‘Look, we can’t go anywhere with a court monitor,’” Humble says. “We’re in a horrible recession. We concede that we’re not going to get all needs met. We’re just going to keep the wheels on state government the best we can.’” 

It was a tough situation. During her time in the state legislature in the 1980s and 90s, Brewer was a champion of rights and better services for people with mental illness. She had a son who spent many years at the state hospital. As governor, she supported a Medicaid expansion that benefited people with SMI (serious mental illness), but she was criticized for dropping her focus on the mental health system. She gets mixed reviews for the decision to settle Arnold v. Sarn.

“They still could use a lot of help today, but we feel very accomplished by what we were able to accomplish,” Brewer told AZCIR this spring. 

“I just know that I worked really hard and I gave it all I could and I saved it. I saved the day and I believe that and I am proud of that.”

Arnold signed off on the settlement agreement. Now, he regrets not pushing harder. 

“Looking back on it, I think we were not enough,” he says. “The constructs that were intended to be created, the housing opportunities, employment opportunities, the kind of respect piece that had been lacking from our system is still compromised. You know, dignity, respect, or honor serving people with disabilities in a non-patronizing way.”

Attorney Josh Mozell sits for a portrait in his office’s conference room in Phoenix on June 23, 2021. (Photo by Alberto Mariani)

Chick Arnold retired at the end of 2020. He says that would not have been possible if not for Josh Mozell, a young attorney who took on Arnold’s caseload—and his cause. Like Arnold, Mozell believes the mental health care system has failed the state’s most vulnerable. As a caseworker for several years before attending law school, Mozell worked directly with people with chronic mental illness. He understands the system’s shortcomings from the inside. 

Mozell, 38, also wants to change the system. He is president of the board of a local non-profit called the Association for the Chronically Mentally Ill (ACMI), whose members push for legislative remedies and other reforms. He sits on an independent oversight committee that monitors conditions for people with serious mental illness in central Arizona. Mozell has the ears of agency heads, hospital directors and police chiefs, and this fall, a joint legislative committee will convene to address shortcomings at the Arizona State Hospital, thanks to Mozell’s lobbying efforts at the state capitol. 

Like Arnold before him, Mozell represents hospital companies and other providers, something that gives him a paycheck as well as insight into how the system works and access to decision makers. 

It’s about all of that, for sure, but there’s something else that makes these men so effective. 

When Chick Arnold walks into a room of policymakers, Mozell says, people fear him—but they want to give him a hug. It’s part of his magic. 

For Mozell, it’s understanding the system in ways few do. The younger lawyer spends a great deal of time with clients who are in crisis. 

On a muggy Friday morning in August, Mozell perches on the edge of a couch in a room at a central Phoenix extended-stay hotel, laptop open. Next to him, Rob Niebuhr shifts his tall frame to get comfortable, casual in a black tee shirt, shorts and Adidas in contrast with the lawyer’s dress clothes. 

Robert Niebuhr meets with attorney Josh Mozell in August 2021 to discuss Niebuhr’s living arrangements and how to get 

Just out of jail, Niebuhr’s wearing an ankle bracelet. He has schizophrenia, and was given a two-year sentence for chasing his stepfather with a dinner knife during a psychotic episode in 2017. The incident ended when Phoenix police shot Niebuhr.

Years later, Tarrill Kertesz sobs as she recalls her son’s shooting. She had called 911 during some of Rob’s previous outbursts when the family lived in Washington State and says the police had helped calm him down. This time was different.

“They shot him in front of me. And I was screaming that we called for help, not for you to shoot him.”

Police reported that Niebuhr came at them with the knife. Niebuhr was shot twice in the back and once in the arm and leg. As soon as he was well enough, hospital staff extubated him in the middle of the night and sent him to jail.

Kertesz found Holly Gieszl, a defense attorney who often represents people with mental illness. Gieszl represented Rob in his criminal case, alongside a public defender. “I don’t know what we would have done without Holly,” she says.

Holly Gieszl poses for a portrait at a Phoenix law firm on June 23, 2021. Photo by Alberto Mariani | AZCIR

Weeks before her son was to be released, Kertesz says she began asking jail officials about the formal plan to transition Niebuhr to the community. The shooting happened in Phoenix and while she’s since moved to Yuma, Kertesz and her husband love Niebuhr and want him nearby; but the court says they can’t see each other. 

When Niebuhr was released, she brought him clothes and a cell phone. They let Kertesz hug her son, she says, “and that was it.”

Niebuhr and Kertesz stayed in touch. 

Within days of Niebuhr’s release, there was trouble. Despite his mother’s pleas, she says there was no workable transition plan. Niebuhr was placed at a setting that has housed sex offenders, Kertesz says, because there was no other place for him. Niebuhr explains that he was quickly kicked out for fighting and bounced to a couple other places before landing at this hotel, which his mother had been paying for. Desperate and running out of money, Kertesz called Gieszl, who contacted Mozell.

Sitting in the small motel room, Mozell sounds more like a case manager than a lawyer as he asks Niebuhr if he knows why he hasn’t been given a place to live (no), how he’s feeling (good) and if he has his meds (yes). Niebuhr is frustrated because he was supposed to be picked up earlier that morning and taken to a mental health clinic to see a counselor. He stood outside at 7:30 a.m., he says, but no one came.

Mozell nods and keeps taking notes. 

Niebuhr starts talking about his phone, which is broken, and pretty quickly it’s clear that he’s not entirely well. The phone was sending him codes, he says. Now he has to get those messages through the television in his room.

The lawyer returns to his office and makes some calls.

Weeks later, Kertesz reports that the system has found her son a safe place to live and he’s being assigned to an ACT team, a high-impact case management plan for people with significant needs. He’s getting food baskets, peer support and someone’s supervising his medication—all of which should have happened automatically if the system was working, Mozell says.

Later in September, Gieszl and Mozell report that Niebuhr is struggling again. 

“It’s up and down,” Gieszl says.  

Mozell acknowledges that he rarely encounters a mental health crisis that is not brought to him by a family member. That haunts him, and reminds him of his time working in the system.

“Everybody on my caseload was alone,” he says. “They had either left their families or their families left them. That is the reality—this group does not have access to any kind of power.”


Josh Mozell estimates that he’s able to help a few dozen people with chronic mental illness a year. There are only so many hours in the day, and not everyone can afford to hire a private lawyer. (Mozell and Gieszl do take some pro bono cases, but they can’t afford to represent everyone at no cost.) That’s where the Association for the Chronically Mentally Ill comes in. The board of directors includes several people who fought for years to get help for their family members with chronic mental illness, as well as Mozell and Gieszl.

Founding member Deborah Geesling describes how she first got involved in the system, through her son. 

As a boy, he loved to do tricks on BMX bikes and play guitar like his older brother. But when Geesling’s son turned 14, something changed.

At first, Geesling says, her son was really anxious. He ran away from their Gilbert home several times. The third of four boys, he told his little brother the record albums hanging on his bedroom wall were whispering to him. He hit his father. The police came.

The young man wore handcuffs and a jumpsuit to his first visit with a psychiatrist. The doctor prescribed pills.  

“I just remember driving away from that appointment feeling relieved, like we really got something to start with,” Geesling says. 

She was right about one thing—it was only the beginning. 

“I called up the next morning to check on him and the person who answered the phone said, ‘That’s your son? He’s a psychopath.’ And he kind of laughed. He said, ‘Give him the number to the homeless shelter and pack his bags.’”

DEBORAH GEESLING

Geesling’s son had his first psychotic episode at 18. He had stopped taking his meds, wasn’t sleeping, sat at his brother’s drum set, hitting one drum over and over. And then it got worse. He landed at a psychiatric evaluation center in Phoenix. 

“I called up the next morning to check on him and the person who answered the phone said, ‘That’s your son? He’s a psychopath.’ And he kind of laughed. He said, ‘Give him the number to the homeless shelter and pack his bags,’” Geesling says.

“After that phone call, I was on the floor. I literally dropped to my knees. I was crying. I was just, I felt like I was in this pit, like, ‘Okay, what do I do with this?’”

In the end, her son was admitted to a psychiatric facility, where he stayed for three months. The following year, he was hospitalized four timesThe doctors told Geesling he was one of the sickest people they’d ever seen. He believed Geesling was practicing witchcraft on him. Her youngest son says he slept at friends’ houses as much as he could, terrified to be near his older brother. 

But pretty much as soon as hospital staff learned her son lived at home, Geesling says, they’d try to release him every time. 

“How about you take him home,” she recalls thinking, “and then you tell me if you think he’s fine.” 

It took years, constant attention and the painful decisions both to seek guardianship and to announce that he had no place to live so he could qualify for housing, but today Geesling’s son is stable and living in an apartment. 

Lately, Geesling has been taking a call a day from someone else whose child, spouse or sibling is in crisis. 

Other ACMI board members take calls as well—and have their own stories to tell. Laurie and Chuck Goldstein charted the costs to private and public insurance companies over many years as the system struggled to finally get their son proper care. Barbara Honiberg’s son was hospitalized 50 times in a decade. Dick Dunseath’s son sometimes walks or even jumps into traffic. He’s been hit twice by cars. 

ACMI is not without controversy. The group is filled with hard chargers who don’t mind making enemies. Like Mozell, they are concerned about pretty much every aspect of the state’s mental health system, but their focus is often on what they see as the need for locked residential treatment facilities for those who are not sick enough to be in the state hospital, but not well enough to come and go as they please. 

Earlier this year, the Morrison Institute for Public Policy at Arizona State University released a report about housing for people with chronic mental illness sponsored by ACMI and funded in part by the Goldsteins’ philanthropic foundation. The study found it’s far less expensive to provide housing for people with mental illness than to let them live on the street where they place a burden on the health care and criminal justice systems.

For the most part, ACMI’S focus has been the Arizona Legislature. They’ve had some success. In 2019, the governor signed a controversial bill appropriating money for the purchase of land and construction of a secure residential facility, creating a new level of care for Arizonans with mental illness who are not sick enough for the state hospital but too sick to live on their own. Funding for the project is $3.5 million. 

That law also created a formal definition of chronic mental illness. 

The 2021 legislative session proved fruitful as well for ACMI, which backed several bills, some of which were successful.

ACMI stopped short of convincing the legislature to lift the bed limit at the state hospital, but did get a law signed that is designed to increase accountability by improving audio and video surveillance at the state hospital. And while the group was unsuccessful in its push to sunset the state’s Psychiatric Review Board, which determines whether a person deemed guilty but insane should be released from the state hospital, a law was passed that is meant to increase accountability by standardizing medical reports used in the decision-making process. 

Other successful ACMI-backed legislation included a law that creates a transition program for people with mental illness reentering the community from prison and one that addresses the process of court-ordered evaluations for people with serious mental illness.

ACMI members’ viewpoints aren’t always shared by other mental health advocates. 

Eddie Sissons worked in various roles in and around Arizona’s mental health system for decades. Like some other advocates, Sissons opposed the legislation that funded the secure residential treatment facility. She wants to see the system take a more “holistic” approach that focuses on peer and family training, as well as facilities that are not locked but offer 24 hour care, such as a longtime program run by the Foundation for Senior Living.

“They have a point,” she says of ACMI. “But it’s not just to rush out with a fire truck. How do we back it up so we’re doing fire prevention so we don’t have the need to go to ASH, to go to secure residential and that I think is a bigger, harder, more difficult discussion to have.”

Sissons does agree with Mozell and others that the mental health system in Arizona continues to falter. 

“I don’t have a magic answer,” she says. “I wish I did.”

Rachel Gold contributed reporting to this article.

People with SMI on the streetsImage by Geesling photography -SMI people on the streets of Phoenix

Linda Mimms initially shared this article via social media. This article is a brilliant take by Dr. Rob Laitman on what it costs our society monetarily and, more importantly, our humanity. Failure to appropriately treat people with mental illness disorders is caused by not meeting people’s treatable medical brain disorders, in addition to multiple other factors. We have been violating the CIVIL RIGHTS of this neglected group of sick citizens who have needed treatment for decades with disastrous results. The family and community burden is one of these many disastrous outcomes. These members’ lives with serious mental illnesses are often 25 years shorter than the rest of the population. Jails and prisons are treating (though inadequately) our sickest society’s members using our criminal system as an alternative to a therapeutic environment.  They have become a de facto significant psychiatric provider in this punitive setting. We continue to treat the behaviors of mental illness as criminal acts.

Charles Goldstein, MD

  “The more I look into the horror of our healthcare system, the more outraged I become. Let me give you some perspective as a nephrologist (kidney specialist). End-Stage Renal Disease (ESRD) is the only medical diagnosis that automatically qualifies you for Medicare. Currently, there are 468,000 ESRD patients in the USA. The average expenditure per patient per year is $150,000. The total cost is 70 billion dollars. Employment in ESRD patients is 20% employed to age 55 and less than 3 % thereafter. Now let us look at the psychotic spectrum disorders representing 2% of the population (1 % schizophrenia spectrum and 1 % bipolar with psychosis). This percentage represents 6,620,000 individuals. If we were to support their medical needs fairly and comparably, we would be willing to devote 1 trillion dollars just for their care.

   So what do we spend? When it comes to direct patient care for schizophrenia, the most recent estimate from a 2016 study was 37.4 billion. If you were to assume that the cost of taking care of someone with bipolar with psychosis was similar (actually, we know it is substantially less), the cost would be about 75 billion. Essentially we are only spending less than 1/10 for our patients with psychosis medical care than we have already decided would be appropriate in the ESRD population.

   What is even more outrageous is this lack of support leads to tremendous non-direct healthcare costs, including law enforcement, homeless shelters, and productivity losses of both the patients and the caregivers. Specifically, for schizophrenia, unemployment cost was 59.2 billion, and caregiving was 52.9 billion.

   What drives this tremendous disparity in resource allocation starts with the nihilistic belief that psychotic spectrum disorders are not treatable. Why should we devote resources to a hopeless population? Another component is that 50 % of this population has anosognosia, and therefore does not feel that they need treatment. Given the current status of the laws that “protect” patient’s rights, such as HIPAA and the underutilized and underpowered AOT laws, it is impossible to engage the patient even to start an effective treatment. Where we are right now is less than 50% of all patients with psychosis receive any care. The biggest psychiatric providers are the LA jail, Cook County jail, and Rikers Island jail. It is estimated that 20-40% of the prison population has a psychotic illness. The ever-growing homeless population also has been found to have a similar % of serious mental illness. At present, in those receiving treatment, only 14 % are in meaningful recovery.

   The question is, what are we doing wrong, or is this just a hopeless population? What does the evidence say? As it turns out, there is increasing evidence that early identification of prodromal high-risk individuals can be identified, and by working on their processing speed (REM) the development of the full-fledged psychotic disorder can be aborted. Even after the development of psychosis, early treatment with the most effective treatment and wrap-around social services can change the trajectory of the illness. This is being demonstrated impressively with the Recovery After Initial Schizophrenia Episode (RAISE) study.  Remarkably,  the VA has shown that if patients are switched to clozapine, there is a savings of over $ 20,000 accrue per patient-year initially, and as monitoring becomes less, that saving grows. Switching to clozapine has also led to the best survival, the lowest hospitalization rate, and the best quality of life.  In my hands, I have demonstrated what is possible with optimal clozapine care. 75/103 of my patients treated over six months are in meaningful recovery. I define meaningful recovery as being in school, work, or a PROS program training to work. Hospitalization and, therefore, the cost of care has been minimized. In over 330 patient-years of care, there have been only 1.3 years of hospitalization. This translates out on average 1-2 days/year in the hospital. Medical compliance has been over 90% in those that have been successfully engaged, and overall over 98% of the population considers themselves improved with my care.

   So we need to let our legislators know that they are not throwing good money after bad money. We need to have the resources to change the barriers to care. Specifically, we need a national uniform rational AOT program that gives the provider the ability to treat the patient where the need is demonstrated. Serious mental illness is a team sport, and communication has to be seamless, so we need to reform HIPAA to assure that caregivers are involved in every step of the way. We need to invest in improving access. Taking care of these patients takes a lot of work, and the reimbursement is dismal for the provider. So I return to the ESRD program. For every dialysis patient, the provider is paid a fixed amount for dialysis management. Clozapine is a lot of work and is superior to all other antipsychotics in every setting, and yet only 2% of the population is so treated. We need to invest in these patients and provide a treatment stipend for management. A reasonable fee schedule would be initially $1000/mo for the first six months, $750/mo for the next six months, and then $500/mo after one year. If the patient is hospitalized, the amount should be reduced proportionally to the time spent in the hospital. This is how the ESRD program works, and this carrot has led to superior clinical care. In our population, this small carrot could be a game-changer not only in the quality of care but the end of being a tremendous cost saver. With the cost-saving, we would then be able to devote more resources to all of the appropriate supports.

   In summary, we need to convince the powers that be to devote appropriate resources. We need bravery to insist on rational laws that help engage our patients and families in therapeutic relationships. Our medical professionals need to be re-educated in what is possible and learn the correct approach to treatment. We need to pay adequately for this arduous but rewarding work. If we do this, we will be able to provide an optimal clozapine based regimen with full wrap-around psycho-social services. With this, we will not only end suffering, but we will see a majority of this population lead lives of purpose and meaning.” Robert S. Laitman, MD

ACMI Board

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August 19th, 2020 05:00 PM Arizona Come learn from respected psychiatrists- Dr. Beth Darling and Dr. Alicia L Cowdrey

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