The IMD exclusion was enacted into Medicaid law in the mid-1960s. At that time public sentiment, fueled by atrocities at asylums, caused a wave of the desire for community treatment. The end result over many decades was the reduction of inpatient psychiatric beds to 5% of what it had once been; community treatment was now the answer to the treatment of persons with serious mental illness aided by the new psychiatric drugs. The problem is that it wasn’t enough and some people require longer treatment in a secure setting. This population is now overrepresented in jails, prisons (which have become the de facto psychiatric institutions of our time), and on the streets. They deserve more dignity in their lives.

ACMI feels strongly that the IMD exclusion should be repealed!

ACMI Board


Here is a nice article by Peter Earley discussing the same topic:

Posted April 15th, 2022 Advocate Tells SAMHSA To End IMD Exclusion That Prevents New Hospital Beds – Pete Earley

Untreated SMI – Courtesy of Pixabay

(4-15-22) Is the federal government’s Institutions for Mental Disease (IMD) Exclusion outdated and actually harming Americans with serious mental illnesses?

Leslie Carpenter, the co-founder of Iowa Mental Health Advocacy and a member of the National Shattering Silence Coalition, told a federal panel that advises Congress and the Substance Abuse and Mental Health Services Administration (SAMHSA) that it is.

She made her argument during the public comment session at Wednesday’s (4-13) Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC).

In her remarks – limited to three minutes – she explained.

“This policy was enacted in hopes of ending atrocities occurring at our large state psychiatric hospitals by prohibiting Federal Matching Medicaid funds from being used by any facility with more than sixteen beds for people with “Mental Diseases” who are aged 18 – 64. This well-intentioned policy has been a legal form of discrimination on this population of people who have brain illnesses, which are not their fault and no one chooses, and no one deserves.

“The IMD Exclusion didn’t end the atrocities, it both relocated them and worsened them. It has resulted in 169,000 people being left untreated and under-treated across our country on our streets and unsheltered…In addition, 383,000 people with serious brain illnesses are in our jails and prisons, where far too many are untreated and, in many cases, in solitary confinement.

“And many more are dying every single day. They are clearly not better off “in the community.

“The shear fact that 51% of people with Bipolar Disorders and 40% of people living with Schizophrenia are untreated, totaling 4.2 million people should shake everyone on this committee and those listening to the core.

Representative Grace Napolitano’s bill, HR 2611, * (press release about bill below) would end the IMD Exclusion, so that federal matching Medicaid funds could be accessed for not only hospitals, but also many other facilities along the continuum of care up to and including true #HousingThatHeals. This bill now has fourteen co-sponsors and is gaining momentum.

“A recent article in Psychiatry Times is titled, “Psychiatric Care in the US: Are We Facing a Crisis?” Are you kidding me?

“We have had a humanitarian crisis for decades for people with the most serious psychiatric illnesses! Sadly, too few people know it is happening, and even fewer seem to care.

“We implore you to help us to bring this crisis both to the attention of the country and to help us to bring it to an end. It is well past time.”

Steady Decline In Beds

State hospital beds have been steadily declining since the 1960s during the deinstitutionalization era. In 1955, there were 558,922 state hospital beds. By 2005, that number had dropped to 50,509 and by 2016, the number was 37,679. According to the WHO Mental Health Atlas (2017), the median number of psychiatric beds per 100,000 population is around 50 in high income countries.  According to an article in JAMA, Journal of the American Medical Association, the US has 21 psychiatric beds per 100,000 which suggests an overall moderate shortage of beds.” JAMA adds, “There is also significant variation between the 50 US states with respect to psychiatric bed numbers.”

There are many reasons why we’ve eliminated mental health crisis care beds, but the results are the same. According to Modern Healthcare, “Psychiatric patients wait disproportionately longer in emergency departments before receiving treatment and experience longer stays compared to other patients, according to reports released  by the American College of Emergency Physicians…”Almost 21% (of responders) said patients wait up to two to five days for an inpatient psychiatric bed.” In some incidents, psychiatric patients are handcuffed to gurneys while waiting.

In the past, Congress has shown little interest in ending the IMD Exclusion. Former Rep. Tim Murphy (R-Pa.) tried to eliminate it when he wrote the Helping Families In Mental Health Crisis Act, but by the time it was signed into law during the Obama Administration as part of 21st Century Cures Act, that language had been eliminated. Democrats and groups representing individuals with lived experience argued that patients needed to be treated in community settings, not hospitals.

Sadly, what that well-intended argument misses is that when someone is experiencing a medical crisis, few community mental health providers are equipped to help them. Too often this leads to them ending up in jail.

It is encouraging that Rep. Napolitano, a California Democrat, is now pushing for an end to the IMD Exclusion, but my sources on Capitol Hill tell me there remains little interest among most of her colleagues to change the law and no interest within SAMHSA leadership. Opposition by civil rights organizations and peer groups remains high.

Rather than constantly fighting between community services and building more hospital beds, we should recognize there is a need for both. We should meet the needs of each individual based on what would best help them. Instead, we end up fighting among ourselves for table scraps.

Thank you Leslie for your public comments and your ongoing efforts to improve our system.

News release about Rep. Grace Napolitano’s bill.

Napolitano’s Increasing Behavioral Health Treatment Act Supported by LA County Board of Supervisors

April 20, 2021Press Release

WASHINGTON, DC – Today, the Los Angeles County Board of Supervisors unanimously moved to support Rep. Grace F. Napolitano’s H.R. 2611, the Increasing Behavioral Health Treatment Act. The bill would repeal the Medicaid Institutions for Mental Disease (IMD) payment prohibition and require states to submit a plan to: increase access to outpatient and community-based behavioral health care; increase availability of crisis stabilization services; and improve data sharing and coordination between physical health, mental health and addiction treatment providers and first-responders.

“Medicaid is the largest payer of mental health services in our country, and expansion of this critical coverage is long overdue,” Napolitano said. “Without in-patient beds, individuals experiencing mental health crisis are often released from emergency departments and forced to deal with their illness without professional care. They tragically too often end up in prison or on the streets, which not only worsens mental health conditions, but increases the cost of care to the state and the federal government. Providing relief from the IMD payment prohibition would finally give California and other states the ability to use federal funds to cover Medicaid-eligible individuals in need of behavioral health treatment. I thank the Board of Supervisors for supporting my legislation and recognizing that we must do all we can to provide life-saving care to any resident in need.”

“Through my motion, unanimously approved today, the Board of Supervisors will send a 5-signature letter in support of H.R. 2611, the Increasing Behavioral Health Treatment Act, introduced by Representative Grace Napolitano,” said Supervisor Kathryn Barger, Los Angeles County Board of Supervisors, 5th District. “This is important federal legislation that will help provide adequate inpatient or residential mental health treatment beds for individuals between the ages of 16-64 in need of critical services.  I am grateful for Representative Napolitano, who shares my commitment and dedication for providing compassionate mental health care, and ensuring individuals receive the most appropriate care in the most appropriate setting.

The IMD payment prohibition is a long-standing policy that prohibits the federal government from providing Medicaid matching funds to states for services rendered to certain Medicaid-eligible individuals, age 21-64, who are patients in IMDs. The term “IMD” is defined as a hospital, nursing facility, or other institution of more than 16 beds, that is primarily engaged in providing diagnosis, treatment, or care of persons with mental diseases, including medical attention, nursing care, and related services.

“Repealing the IMD exclusion is not only necessary to address the mental health care needs of individuals requiring and deserving adequate residential services to heal, it is also an important step in resolving both the critical parity gap between physical and mental health care that continues to plague this field from a fiscal perspective, as well as the societal stigma that interferes with access to treatment at the expense of those most impacted by brain illness,” said Dr. Jonathan Sherin, Director of Los Angeles County Department of Mental Health.

LA County Board of Supervisors Letter Supporting H.R. 2611

5sigletterSupportforHR2611(Napolitano).pdf

PDF icon5sigletterSupportforHR2611(Napolitano).pdf

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ACMI wants to share a series of reports from Amy Silverman on the state of services for people with serious mental illness in Arizona.

Advocates for people with serious mental illness call for improved conditions at the Arizona State Hospital, and more beds.https://azcir.org/news/2021/10/21/grievances-reforms-arizona-state-hospital/

by Amy Silverman October 21, 2021

Isaac Contreras lives alone and he says it’s making him sick. 

He’s got a room and a bathroom to himself, but the luxury stops there. Contreras has spent more than a year in “administrative separation” at the Arizona State Hospital (ASH). His lawyers call it isolation. 

Contreras was sent to ASH in 2017 after pleading guilty but insane to breaking his ex-girlfriend’s eye socket, cheekbone and nose, most likely during a period when he was having hallucinations associated with schizophrenia. Previously, Contreras had served a prison term for manslaughter.

As with many people with serious mental illness, Contreras’ diagnosis has changed over the years. In March 2021 it was anti-social personality disorder, intermittent explosive disorder and post traumatic stress disorder, as well as substance use disorder that’s in remission. He’s on a long list of medications.

He and his lawyers acknowledge his past, but say that a lack of proper medical care while at ASH has made Contreras worse, exacerbated during his time in administrative separation.

In his current living situation, Contreras is indoors at least 22 hours a day. Twice a day, he’s allowed to sit outside on a patio. He says that restraints are kept on his legs when he leaves his quarters. At one point, he didn’t have a table or chair; Contreras’ lawyers say that ASH officials refused to provide them, then did so after the lawyers offered to pay for the items. For a three-month stint, he was forced to eat with his hands after his spork privileges were revoked. 

Holly Gieszl, a criminal defense attorney, represents Contreras along with civil lawyer Josh Mozell. Both routinely represent people in the mental health system. 

From left, attorneys Holly Gieszl and Josh Mozell are shown at a Phoenix law office on June 23, 2021. Photos by Alberto Mariani | AZCIR

“ASH didn’t give him the psych and medication support he needed to function on a daily basis,” Gieszl says. “And shortly after he was in seclusion, he started to deteriorate more.”

Mozell says that ASH has kept Contreras in isolation as retaliation for filing more than 300 grievances during the time he’s been a patient. At least two of those grievances were partially sustained, including one affirming that a staff member had physically assaulted Contreras by grabbing him in a bear hug. That employee later lost his job, in part because of the interaction with Contreras. 

In another grievance filed in 2017, long before he was placed in “administrative separation,” Contreras alleged that he was kept in mechanical restraints for 14 hours, despite having been calm immediately beforehand. ASH did not sustain his grievance, so Contreras appealed the decision to the hospital. 

In February 2020, ASH dismissed his concerns for a second time. 

Contreras then wrote to the Arizona Health Care Cost Containment System (AHCCCS), which handles appeals. In November 2020, AHCCCS upheld part of Contreras’ grievance, noting that surveillance footage backed up his claim about being kept in restraints. AHCCCS also noted that “It does not appear that ASH conducted an additional investigation as required” given that the hospital’s second decision letter was “identical” to the first.  

Other grievances were never sustained. An investigator from AHCCCS, which looks into allegations of physical and sexual abuse at ASH, confirmed that Contreras sustained a broken bone in his back after a violent incident with a staff member, but Contreras was said to have provoked the event, not the staff member. 

Along with filing grievances about his living conditions and treatment by hospital staff, Contreras keeps busy by recording videos of himself talking about his situation and finding surreptitious ways to get them posted on YouTube

“This place—if I’d known it was going to be like this, I would have told my lawyer, ‘You know what? Send me to prison,’” Contreras tells the camera.  


The Arizona State Hospital is one element in the state’s mental health care system—and probably its most controversial. 

While institutions like ASH are becoming a thing of the past nationwide, members of the local non-profit Association for the Chronically Mentally Ill (ACMI), and others believe there should be more beds available at the hospital; they are convinced ASH has the potential to offer therapeutic treatment that will help some of the sickest people get better and lead meaningful lives in the community. 

But first, they say, reform is necessary. 

Long time players in the system say oversight at ASH is inadequate because the Arizona Department of Health Services both operates and monitors the hospital. 

An independent oversight committee (IOC) comprised of citizen volunteers meets monthly to discuss conditions at the state hospital. In a draft of the committee’s 2021 annual report obtained by AZCIR, members express concern that patients are complaining about being observed while toileting, without a medical reason. Guardians of patients at ASH have told the committee they are not included in the development of treatment plans. The committee noted that ASH administrators don’t attend IOC meetings.

As recently as August, committee members expressed concern over reports that patients were peeling wood and tile from the buildings at ASH and using the materials to self-harm. The IOC’s annual report included mention of “numerous reports of patients eating laminate from doors, cabinets or paneling.” 

And the committee has worried about patients who claim they have been retaliated against when they complain about poor conditions. At least one advocacy organization is looking into that, too.

In response to questions from AZCIR, Arizona Department of Health Services Communications Director Steve Elliott wrote that federal privacy laws prevent him from discussing an individual patient. 

“ASH uses administrative separation under limited circumstances and when necessary for the safety of patients and staff,” Elliott wrote. 

In response to the Independent Oversight Committee report, Elliott wrote that the toileting concern is addressed with care. 

“If a patient insists on using the restroom within 30 minutes, staff observes while providing the patient as much privacy as possible to make sure oral medication isn’t saved or disposed of. Patients on continuous observation for safety have staff present at all times, while staff make every effort possible to provide as much privacy as possible.”

He did not directly address the concerns regarding guardians not being included in treatment plans, or whether patients are removing pieces of building materials and eating them. 


The 1900 Biennial Report of the Medical Superintendent of the Insane Asylum of Arizona offers far more detail about life in the state hospital than just about any modern document.

The report described two deaths in the 18-month period covered, including one by rattlesnake bite, incurred during an outing to Agua Caliente Hot Springs. The typical daily menu (including a breakfast of mush and milk, meat stew, fruit, bread, coffee and milk) is detailed, along with holiday menus and the superintendent’s Christmas gift to each patient of candy, nuts, oranges and “a useful gift.”

The population was carefully documented in a long list of patients’ occupations, including beggar, locksmith, sea captain, housewife, civil engineer and piano player. “Causes of insanity” included brain disease, masturbation, epilepsy, fright, solitary life, and “want of work.”

But for all that detail, there’s very little in the report about mental illness.

“Complete mental rest and mild physical employment have been found most efficacious in relieving cases of temporary insanity,” wrote Superintendent J. Miller, M.D.

He requested equipment and facilities that would allow for medical interventions.

“Insanity for women is commonly caused by pelvic diseases which may be remedied by surgical means,” Miller wrote, adding that the asylum was also in need of a medical library.

The hospital population was 175 in 1900.

Arizona State Hospital 1920
The Arizona State Hospital, known as the Insane Asylum in this 1920 colorized photo from the Arizona State Library, is shown in this undated photo postcard illustration. Photo courtesy Arizona State Library

By the late 1960s, the renamed Arizona State Hospital housed about 2,000 people with serious mental illness. But a 1970 state law requiring ASH to accept only those presenting a danger to themselves or others shrunk the number of patients to about 300, in keeping with a national trend of deinstitutionalization made possible by the introduction of medications designed to treat mental illness. 

ASH was dogged by state audit findings of facilities in poor condition, overcrowding and lack of staffing in the 1990s. In a 2015 investigation, former Arizona Supreme Court Justice Ruth McGregor found dozens of instances in which Phoenix Police filed a report following a call to ASH and there was no corresponding hospital incident report documenting what happened. In addition, of more than 1,400 assault allegations, only 33 led to internal investigations and 199 to inquiries by Adult Protective Services.

The population at ASH has remained small, in part because of reforms designed to limit institutionalization. 

In recent decades, some states have shuttered their psychiatric institutions as part of the goal of supporting people with mental illness in the community. Arizona stopped short of that. In the Nineties, as part of the exit criteria for the Arnold v. Sarn lawsuit that led to mandated care for people with SMI, a 55-bed limit was put in place for Maricopa County. That number was included in the 2014 settlement agreement in the case and remains the same today, despite the fact that the county’s population has more than doubled in the last 30 years since the cap was put in place.

(Here, it gets a little complicated, as ASH treats both forensic patients like Isaac Contreras, who is there because he committed a crime, and civil patients receiving court ordered treatment. The 55-bed limit applies to the civil side only.)

The debate over the 55-bed limit is heated. 

Chick Arnold, the lead plaintiff in Arnold v. Sarn and a longtime mental health lawyer and advocate, signed the settlement agreement but now says he believes there should be no limit on bed count—that it’s a “clinical” decision best left to medical professionals.

Anne Ronan, a plaintiff’s attorney in Arnold v. Sarn, has a different position.

“We don’t need ASH, we never needed ASH, we don’t need two beds at ASH,” Ronan says. 

“There’s nothing about the problems that the system is experiencing that gets solved by more secure housing at the state hospital.”

Carol Olson, who chairs the psychiatry department at Maricopa County’s Valleywise Health System, has a different perspective. She believes the 55-bed limit should be lifted.

She says Valleywise’s behavioral health units are overwhelmed with patients with SMI, including some who wait for more than a year for a bed at ASH. The county’s mental health units are designed for short term stays of up to 21 days. 

Dr. Carol Olson, chair of the psychiatry department at Maricopa County’s Valleywise Health System, is shown in her Mesa office on July 1, 2021. Photo by Alberto Mariani | AZCIR

On a given day, Valleywise fills 300-325 beds, with an ASH waiting list of a dozen or so. It’s not a large number, but it’s an important population, Olson says. 

“Valleywise has become like a mini state hospital,” she says, adding that that’s unfortunate since it’s not equipped for long term stays, particularly for some of the sickest patients. Many require a private room and sometimes one-on-one staff person. There is no rehabilitation staff and not much of an outdoor area for patients. 

Olson says Valleywise is very selective about whom it suggests should go to ASH. 

“We don’t even consider somebody for an application to the state hospital until they have been with us for three months or longer.” 

Even then, she says, ASH is often vague about why they won’t accept a patient. Olson says they will rarely accept someone who swallows foreign objects, for example, and they often won’t take a patient with a serious substance abuse disorder along with SMI, because such patients can often be stabilized in a short term facility. Olson says that’s not enough, that some need a longer stay in order to be successful and not return to a hospital setting. 

Some patients simply remain at Valleywise, even when there are beds available at ASH, because state hospital administrators won’t take them. 

“If we can’t safely discharge them to the community, they stay with us,” Olson says. 

The health department’s Elliott did not respond directly to Olson’s charge. 

“Treatment at ASH is considered ‘the highest and most restrictive’ level of care in the state,’” he wrote. “Patients are admitted because of their inability to be treated in a community facility or due to their involvement in the criminal justice system.” 

Olson, who has worked at Valleywise since 1991, says Arnold v. Sarn changed things dramatically for the better by emphasizing the value of helping people with SMI thrive in the community. But now she says the pendulum has swung too far.

“Many people were placed in long-term psychiatric hospitals in the 50’s and 60’s who didn’t need to be there and nowadays do well living in the community with appropriate supports. However, there are some individuals with very severe psychiatric conditions who have only minimal or partial response to available treatments, who require a long-term stay in a locked psychiatric hospital for the safety of themselves and others and to avoid behavior which would be likely to lead to criminal charges in the community, but are not able to be admitted due to the 55-bed limit at ASH and the restrictive admission criteria there. Many of those patients instead end up in jails or prisons, which are not appropriate settings for severely mentally ill people and often make their conditions even worse.”

She adds, “I wish there would be some focus on what would be most humane for those individuals.”


In a video posted in September 2020, Isaac Contreras is wearing white sweatpants, a black tank top and shower shoes with socks. His dark hair hangs to his shoulders; he’s got a lot of tattoos, including on his face. He holds up several bottles of shampoo, soap and deodorant, as well as an electric razor, then picks up a Styrofoam container of food to demonstrate how he eats peas with his hands because he’s not allowed a spoon. He doesn’t understand why he’s given hard plastic containers, which could be used to craft weapons, but no food utensils. 

He might be a man overcome by his illness, or Contreras might be the canary in the coal mine. 

Either way, through his videos and grievances, he offers a window into the secret world of the Arizona State Hospital. ASH has long been a mysterious place—it’s located in the center of the city at 24th Street and Van Buren, and many people pass by the barbed wire fencing without knowing what’s inside.  

In 2018, the Arizona Center for Disability Law, which is required by federal law to oversee conditions at facilities housing people with SMI, including ASH, successfully sued for unaccompanied access to patients. 

The center announced that under a settlement, “ASH agreed to provide ACDL reasonable unaccompanied access to the ASH facilities and residents” and to allow the center to conduct “up to three-hour visits twice per week for the purpose of educating ASH residents about their rights and the services that ACDL provides.” 

No journalist has been given a formal tour since 2015, Elliott says.

Public oversight is particularly important, critics say, because the same state agency that runs ASH is also in charge of licensing it. 

AHCCCS, the state’s Medicaid agency, took on oversight of the state’s mental health system shortly after the 2014 Arnold v. Sarn settlement agreement, with one notable exception—ASH. 

“Any reader in the whole world will understand why that’s bad,” says Will Humble, who served as the director of the Department of Health Services from 2009 to 2015. “The fox watching the henhouse. Everyone knows what an enormous conflict of interest that is, and up until now, no one has cared.” 

Humble says that as director, he did his best to “build a firewall” between the licensing division and ASH, but believes the health department should not be monitoring a hospital it operates. 

From Elliott’s written response: “It’s a common practice among states for an agency to license and operate a state hospital.” 

Along with the state licensing requirements, Elliott says several other state and federal entities offer oversight, including the Centers for Medicare and Medicaid Services, adding, “ASH is one of the most regulated hospitals in Arizona.”

“The fact remains they are running and operating and regulating it themselves, and it’s not their fault, it’s the statute,” Humble says, adding that the Department of Health Services provides the staff that does the Centers for Medicare and Medicaid Services certification reviews. 

Since 2018 (state records are posted for three years), ASH has had just one penalty under the health department’s enforcement actions—a $500 fine because an employee allowed two patients to be in a room alone, resulting in a sexual assault. 

There was no penalty for the physical assault against Isaac Contreras, even though AHCCCS found his allegations to be true.

AZCIR reviewed incident reports from the first two weeks of January 2020. More than 175 reports were generated, including 22 marked Code Gray, which indicates combative or violent behavior.

The reports document patients hitting, kicking, biting, chasing, punching and spitting at staff, as well as attacking other patients. 

From one code gray report

Code gray report redacted

It’s not unheard of for a patient to walk naked into another patient’s room. One patient reportedly masturbated during a football game. Another punched a hole in a wall when told they couldn’t have fruit late at night. During a bingo game, a patient made threats against another patient, saying, “I am going to fuck him up….I’ll go for the vital organs.”

Other reports detail patients engaging in potential acts of self-harm like tying a blanket into a knot, punching the shower wall, eating toilet paper and claiming to have eaten baby powder, shampoo and conditioner. 

Three separate incident reports appear to document the same situation, in which a patient claimed to have swallowed at least 10 objects, some sharp. The reports indicated that the patient was to be observed, but there’s no information about what happened next—the spot on the incident report for “determination” is redacted, as it is on all of the incident reports released to AZCIR.  


Isaac Contreras remains in isolation. It’s now been more than 15 months.

Josh Mozell says Contreras does not need to be separated from the rest of the patients at ASH. When he meets with his client, Contreras walks out to the visitor area with someone trailing him at a distance, Mozell says, which indicates to the lawyer that there’s not much reason to fear him. 

Even if Contreras does exhibit violent behavior, Mozell says, there are ways to address that without isolating him. He says some patients have a one-on-one staff person or even two assigned to them. 

Using nursing notes that recorded Contreras’ actions in two hour increments over the last several months, Mozell’s staff built a spreadsheet documenting that Contreras has gone weeks at a time without an issue. Legally, Mozell says, ASH is not allowed to keep him in isolation, noting that hospital officials use the term “administrative separation” although Contreras has made a crayon rubbing of the sign above his door, which says “seclusion.”

Elliott, spokesperson for the health services department, declined to comment on the specific circumstances for Contreras because of federal privacy laws. 

Isaac Contreras used a crayon and paper to make an image of the sign above his door, shown here. Photo by Amy Silverman | AZCIR

Mozell is not the only one who’s concerned about patients kept in isolation.

Laurie Goldstein chairs the Arizona State Hospital Independent Oversight Committee charged with monitoring conditions at ASH. 

ASH isn’t all bad, Goldstein says. Her son spent a year and a half at ASH during 2013-15. She says it gave him the treatment and supervision necessary to live in the community with some support. 

She’d like the hospital to do the same for others, and says she and her committee are concerned about patients kept in isolation for extended periods of time. She will not comment directly regarding Contreras, again because of privacy laws, but he has spoken before the ASH Independent Oversight Committee. 

“We don’t find it particularly therapeutic if somebody was to stay in isolation their whole time and then be released,” Goldstein says. 

The committee is curious about one patient’s living quarters, Goldstein says. So far, hospital administrators have refused to offer many details: “We asked to see it. They said no. We asked for pictures. They said no. We asked for dimensions. They said no.”

The committee is also worried that some patients are facing retaliation for filing grievances, which are almost never substantiated, a concern shared by the Arizona Center for Disability Law. 

“The individual who actually processes these grievances, she’s the so-called patient rights advocate, but she isn’t independent. She’s an employee of ASH,” says Asim Dietrich, an attorney with the disability law center, which has a federal contract to monitor conditions at the hospital. 

“Almost every ASH patient we speak to who’s filed a grievance has also received retaliation,” he says.

Since 2019, ASH has received 585 grievances from patients, according to Elliott. Of those, four were substantiated and another three were partially substantiated. AHCCCS investigates allegations of physical abuse, sexual abuse and sexual misconduct. The hospital handles the rest. The state will not release details of grievances, citing administrative code. 

“I’m literally scared of getting out. Even into the unit. Not that they’re going to hurt me, but I’ve been accustomed to a small environment. I don’t understand how these people expect to help me progress if everything they’re doing is making me worse.”

ISAAC CONTRERAS

Contreras described his situation in a phone conversation with AZCIR in September. He says that being isolated is making him worse. 

“Therapy was good, it helps out a lot, but that’s the only thing I get as far as treatment. All I get is my medication and any time they speak to me, it’s behind the window. I’ve never felt this hopeless before, like there’s nothing for me out there. There’s nothing. 

“I’m literally scared of getting out. Even into the unit. Not that they’re going to hurt me, but I’ve been accustomed to a small environment. I don’t understand how these people expect to help me progress if everything they’re doing is making me worse. 

“I have not even seen the sky, I have not seen the sun come up or go down, I have not had the luxury of that.”

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.

John Creamer found himself yelling down a jail cell toilet at voices only he could hear.

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 some issues.

John Creamer sits in his room at a group home facility in Phoenix on June 4, 2021. Photo by Alberto Mariani | AZCIR
John Creamer sits in his room at a group home facility in Phoenix on June 4, 2021. Photo by Alberto Mariani | AZCIR

by Amy Silverman October 19, 2021

Schizophrenia upends life of accomplished academics (azcir.org)

John Creamer has just one question. 

“Can you tell I’m on medication?” 

It’s a heartbreaking ask and impossible to answer for someone who did not know Creamer before his illness. 

Sweet, shy and very low key—whether by nature or the antipsychotic medication—like many people with serious mental illness, Creamer is extremely bright. Originally an English major, he pursued his doctorate in Japanese medieval literature at Yale University so he could study with a particular scholar he admired, and with the hope that an unusual specialty would make it easier to find work. 

After graduation, he landed a job teaching premodern Japanese language and literature in the School of International Letters and Cultures at Arizona State University, but things went bad, possibly because of his deteriorating mental condition, and Creamer lost his job.

Creamer packed his bags for Japan and, looking back, now understands that he had a psychotic episode while he was there. 

“I was in and out of psychosis thinking that people were stalking me, that I was being stalked by a cult. I thought that I was going to get married to a princess.”

Creamer left Japan, traveling to Chicago and Massachusetts, where he says he was placed in mental hospitals by police, and eventually back to Phoenix, where he was arrested on aggravated assault charges after hitting a neighbor’s house with a rock. He thought the neighbor’s dog was a robot controlled by the CIA or Chinese intelligence. 

In jail, Creamer thought someone was spying on him through the toilet in his cell. 

“So I was yelling into the toilet and I was put into the hole, which is solitary confinement,” he says. “It was really bad. I got really psychotic there.”

Eventually, Creamer’s brother, Robert, intervened, hiring lawyers and getting guardianship of John. John got out of jail and into treatment. There’s no cure for schizophrenia, but he’s better. He credits the injectable antipsychotic medication he takes for finally making a difference. 

Without the intervention of civil lawyer Josh Mozell and, later, criminal attorney Holly Gieszl, Robert says, there would likely have been no hope for a happy ending.

“He would be dead or in prison,” Robert says of his brother. “There were many times I feared for his life given his delusions, his situation, and what seemed like an impossible task to get him the treatment he needed.”


For most people, a serious mental illness (SMI) like schizophrenia first appears in early adulthood, in the late teens or early 20s for men and a little later for women. 

There are exceptions. John Creamer experienced his first psychotic episode in his late 40s.

A diagnosis of serious mental illness will often fall under one of several categories. 

Schizophrenia, as defined by the Mayo Clinic, is a mental health condition in which people “interpret reality abnormally.” Symptoms typically include “some combination of hallucinations, delusions, and extremely disordered thinking and behavior that impairs daily functioning, and can be disabling.”

Again from Mayo, bipolar disorder, once called manic depression, is marked by extreme swings in mood, from high (manic) to low (depressed).

Schizoaffective disorder involves symptoms of schizophrenia accompanied by mood disorder symptoms. It’s often described as a combination of schizophrenia and bipolar, a simplistic definition that is only sometimes true.

Major depression can also be diagnosed as a serious mental illness. 

Ultimately, diagnosis can be a guessing game. 

“Medicine is an inexact science, but psychiatry is particularly so,” Esmé Weijun Wang writes in her New York Times bestselling essay collection, “The Collected Schizophrenias.”  

“There is no blood test, no genetic marker to determine beyond a shadow of a doubt that someone is schizophrenic, and schizophrenia itself is nothing more or less than a constellation of symptoms that have frequently been observed in tandem.”

Wang, a graduate of Stanford University, has been diagnosed with schizoaffective disorder. She’s an accomplished author of both fiction and non-fiction. This book of essays has brought her acclaim for demystifying serious mental illness. 

She’s correct that there’s not much certainty about a scientific diagnosis, but researchers are getting closer, and have identified a genetic marker that increases one’s likelihood of developing schizophrenia. 

One of the most confounding things about SMI is that patients often don’t understand they are sick, a condition called anosognosia. 

Creamer acknowledges that stigma also played a role in his resistance to the diagnosis of schizophrenia. He remembers growing up with an aunt with schizophrenia. A poet, she did not have a good life, Creamer says. 

“I did have a prejudice against mental illness. Because my aunt was schizophrenic and I felt like she couldn’t function in society, but I think there are different gradations of mental illness and that if you think something’s off, then definitely go and get help, go to a psychiatrist because it’s not like a death sentence.” 


In early June, John offered a tour of his group home in west Phoenix, a stuccoed tract home different than his own house, which was designed by renowned midcentury architect Ralph Haver in the Arcadia neighborhood near Camelback Mountain. John’s room at the group home was clean and spare with a library cart packed with Japanese texts in the corner.

It wasn’t easy to be quarantined in 2020. John finished several jigsaw puzzles on his own. 

Creamer is still trying to understand what happened. He talks about it in therapy. 

“I’m going through it. I’m journaling, you know, it’s been a year, but that’s not been that long to come to terms with, you know, the diagnosis. It’s huge.” 

June marked Creamer’s one-year anniversary in the group home. He hopes to be released from probation by the end of 2021 and ultimately return to his home in Arcadia. He’s working on his resume with assistance from supported employment services as part of his mental health treatment.

John Creamer talks about his initial resistance to being diagnosed with schizophrenia at his group home in Phoenix. Photo by Alberto Mariani | AZCIR
John Creamer talks about his initial resistance to being diagnosed with schizophrenia at his group home in Phoenix. Photo by Alberto Mariani | AZCIR

He is grateful for the injectable antipsychotic medication he receives, but Creamer doesn’t like how it makes him feel. 

“The medication makes my face feel numb and I don’t feel as sharp as I used to be,” he wrote in a recent email to AZCIR, and he seems to be tired when he gets the injection. 

“But my doctor says it’s just that I’m resentful about getting an injection. Which is true, I do feel resentful, but I also feel like I don’t have as much energy as I used to. I also sometimes get a shaky hand when I try to pick things up and when I’m typing. Also, I sometimes take a deep breath involuntarily through my nose like I’m not getting enough air.”

Creamer hopes to educate others about serious mental illness, including pointing out the system’s flaws.

“I’m not sure exactly how things can change for the better. I know that someone shouldn’t go through what I went through.”

ACMI members are working to help tell the story to the public about our behavioral health system of care.

Charles “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

Arnold v. Sarn, a class action lawsuit that called for services for people with serious mental illness regardless of cost, celebrates its fortieth birthday this year. The litigation ended in 2014 with a settlement agreement that largely replaced “shall” with “may,” encouraging the system to try its best while softening requirements, and permanently doing away with a court monitor—the last remnant of robust accountability that had been in place for decades. Now Charles “Chick” Arnold, the lead plaintiff, says the agreement should have been more aggressive.

by Amy Silverman October 19, 2021

Crisis in mental health care: A place that should know better (azcir.org)

In July 2017, a man in khaki shorts and a blue pullover walked through an empty office at a center for LGBTQ youth in Phoenix with a red can, pouring gasoline on the floor as he left the building. Immediately, flames erupted then engulfed the room.  

Darren William Beach Jr. later said his grandmother told him the building was killing her. She had passed away five years earlier.  

Two days before the fire, Beach had been evaluated for treatment for mental illness at a local psychiatric facility after he’d been pulled three times from a canal. The hallucinations, he claimed, were demanding he take his own life. The facility released him to the street.

After a year in jail following the fire, Beach went to live with his half-sister, Sommer Walter, and her family, including two small boys. Walter didn’t feel like she had an option. “They were going to release a mentally ill man who had just burned a building down to the streets,” she says. 

A week later, Beach was still waiting to be assigned a case management team to help him find housing and manage his medications when he began telling Walter he was a debt collector for the Hell’s Angels. They argued when he threw a cell phone, and Beach left. 

Days later, Walter got a call from a nurse at a local hospital. “They said Darren had been found in the middle of Encanto Park, passed out.” 

He’d taken a large dose of lithium, tested positive for meth and there was blue paint on his face, apparently from eating or huffing it, Walter says. 

Beach bounced among “residential treatments, substance abuse programs, halfway houses/shelters that myself and my family had to pay for and mobile shelters, where he’d sleep at a new church every night,” Walter explains. “Sometimes he’d even just be left to the streets.” 

He was hospitalized a total of 16 times in 18 months. When he stayed at her house, Walter says she found weapons in his backpack—brass knuckles, box cutters, a broken off baseball bat. 

Darren Beach is shown in an undated photo taken while in police custody after he failed to appear for a court date in Arizona. Photo courtesy Sommer Walter.
In this collage of images, Darren Beach is shown at different points throughout his life. Photo courtesy Sommer Walter.

“I would find pieces of glass…with some kind of cloth around one end of it,” Walter says. When she asked Beach what it was for, he answered, “In case I need to shank somebody.” 

She began to worry that “somebody” could be a member of her family after a conversation with Beach during one of his hospitalizations in 2020. 

“He told me, `If you don’t let me out of here, I’m going to burn your house down with you and your kids in it.’” 


Arizona’s mental health care system is failing Darren Beach and others like him, despite its reputation as a national model after a history-making class action lawsuit prompted decades of reform. 

The state spends billions of taxpayer dollars to comply with a law mandating care for adults with mental illness, enforced by a decision from the Arizona Supreme Court.

And yet, the majority of people with serious mental illness in Maricopa County and the state of Arizona are still not getting the help they need. While an estimated 35% of people with serious mental illness receive services nationally, that figure is 25% for Maricopa County. It’s even lower for Arizona, at 18%. 

Arnold v. Sarn celebrates its fortieth birthday this year. The litigation ended in 2014 with a settlement agreement that largely replaced “shall” with “may,” encouraging the system to try its best while softening requirements, and permanently doing away with a court monitor—the last remnant of robust accountability that had been in place for decades. 

Now Charles “Chick” Arnold, the lead plaintiff, says the agreement should have been more aggressive.  

A months-long investigation by AZCIR reveals that despite decades of reforms, Arizona continues to fail some of its very sickest. Interviews with more than two dozen people with serious mental illness and family members, as well as state officials, lawmakers, program administrators, doctors, law enforcement personnel, academics, historians, advocates and lawyers, and a review of thousands of pages of incident reports, grievances, court records, police reports and state records uncovered significant deficiencies in several key parts of Arizona’s mental health system. 

Even when they have qualified for services, people in crisis are not always getting the help they need from high impact case management teams and are often not kept in a psychiatric hospital long enough to recover and be successful. Patients at the state mental hospital complain of poor treatment and retaliation by staff when grievances are aired. For those in the community, employment figures are low and housing is scarce. Some of the sickest people live in unlicensed boarding homes with dangerous conditions and a lack of supervision.

With few reliable statistics and no annual court monitor audits to shed light on if or how the system is working, the public is exposed only to occasional news reports when things go terribly wrong. Largely untold are the stories of some of the sickest people with mental illness and their families—the man released from prison to a home with sex offenders, the state hospital patient who has been in seclusion for 15 months, the college professor thrown in jail because he thought his neighbor’s dog was possessed, the 39-year-old man who hit his 93-year-old female housemate over the head with a heavy metal object during a psychotic episode, the family whose adult son was hospitalized 50 times in a decade.

Public records reveal more, including how unlicensed boarding homes, considered by some to be a thing of the past, are still housing people with serious mental illness, and that the state hospital is plagued by allegations of retaliation for those who complain about poor treatment.

All of this in a place that should know better.

Chick Arnold says that both transparency and accountability have slipped in the years since the settlement agreement was signed. The court monitor in Arnold v. Sarn pumped a healthy dose of fear into the mental health system with the risk of getting called into court if services were not adequate. Today, little remains beyond a series of annual reports designed to measure performance in the areas of case management, housing, employment, peer support and family support. 

Much of the available data that measures the system’s performance focuses on services in Maricopa County, since Chick Arnold sued both the state and county in his 1981 lawsuit.

The Arizona Health Care Cost Containment System (AHCCCS), which runs the state’s behavioral health system, contracts with an outside company to generate reports on the county’s progress. The most recent Quality Service Review was released in 2020. Experts say the methodology is questionable.

The sample of members used in the report to draw sweeping conclusions about the quality of mental health services for an SMI population exceeding 35,000 in Maricopa County was just 107, well below the 135 members researchers initially wanted to ensure the findings were reliable.

In addition, 9 out of 10 people with serious mental illness either could not  be reached or declined to be part of the survey, likely leaving out the sickest people—those in crisis and those whom the system can no longer find. 

Even so, many of the report’s conclusions are troubling.

According to the Quality Service Review, 10 percent of Maricopa County residents in the mental health system did not have an Individualized Service Plan (ISP), the document to guide their care, and only 57 percent actually included objectives that “addressed members’ needs.” Researchers also reported that some ISP goals were not personalized and that it appeared that some might have been copied from other ISP reports.

In addition, in 2020, only 18 percent of people with SMI were employed. A quarter of all members expressed that they did not have enough contact with their case manager. Almost 1 in 3 said they wanted more of a service they were currently receiving. And many indicated that they were unaware of service options.

Those figures are supposed to reflect the general population of people with SMI in Maricopa County.

The state does not release data that targets the people in the behavioral health system who are the sickest, the chronically mentally ill who make up close to 20 percent of the overall number of people with mental illness, according to a 2021 study by the Morrison Institute for Public Policy at Arizona State University. 

This population—several thousand people in Maricopa County alone—often cycles in and out of psychiatric hospitals, jails and homeless shelters, often getting sicker and sicker without the right treatment, as mental illnesses like schizophrenia deteriorate one’s health with every psychotic episode. 

Before the Arnold v. Sarn lawsuit, there was no case management system at all—so things have improved. But Assertive Community Treatment (ACT) Teams, designed to protect the highest needs clients by providing additional oversight for housing, medications and other needs, are not always getting the job done.

In 2019, only 29 of the 100 highest need clients were assigned to ACT Teams. 

Turnover rates for ACT Teams, which rely on continuity to provide the best help, have been as high as 150%.  

Today, a relatively small number of patients are under lock and key at the Arizona State Hospital (ASH). Even those who believe more beds should be available to serve the sickest patients agree that conditions must improve. 

Incident reports from ASH read like scenes out of “One Flew Over the Cuckoo’s Nest,” with staff documenting patients masturbating in public spaces, spitting at, hitting and chasing staff and punching other patients. Patient grievances are almost never substantiated and so many individuals have complained about retaliation after filing complaints that the Arizona Center for Disability Law is looking into the claims. The center sued in 2018 to get access to the hospital, even though it’s got a federal contract to monitor conditions there. 

Arizona Department of Health Services spokesman Steve Elliott denied AZCIR’s request for a tour of ASH, acknowledging that it’s been six years since a journalist formally toured the hospital.

Critics, including the chair of psychiatry at Valleywise Health System, Maricopa County’s hospital system, say state hospital administrators are leaving chronically mentally ill people in settings meant for short term stays when these patients would benefit from treatment at ASH. They also want to lift a 55-bed limit at ASH that’s part of the Arnold v. Sarn settlement. 

One of the biggest concerns when it comes to hospital stays is that they simply aren’t long enough. There’s a well known saying in the mental health system—“treat, street, repeat.” In other words, if a person having a mental health crisis is not kept in a secure facility long enough to truly be stabilized, they will quickly find themselves in crisis again, likely leading to another hospital stay—or a tragedy. Darren Beach, who was hospitalized 16 times in 18 months, is a good example.  

It’s clear that AHCCCS administrators recognize the need for longer hospital stays—or, at least, want the federal government to pay for them. A 2017 application for a federal Institutions for Mental Disease waiver to allow for reimbursement for hospital stays longer than 15 days in a calendar month remains open. (This does not apply to government run facilities like the state or county hospitals.)

According to state data, in fiscal year 2019, 15,413 people in Arizona’s mental health system accounted for 24,617 psychiatric hospital stays. 

Of those visits, 573 visits were more than 15 days.

Only 15 visits exceeded 45 days. 

And then there’s the challenge of what happens once someone does get out of the hospital and is ready to live in the community. 

A lack of safe, supported housing—considered by many to be the single most important factor in the successful long-term treatment of a person with mental illness—continues to elude many of the sickest people in the system. People interviewed for this story reported that family members with chronic mental illness were released from psychiatric hospitals to the street. There’s a statewide housing waiting list of 2,800, and more who are unable to use HUD vouchers, sometimes because of a lack of housing inventory.

Some people with chronic mental illness live in unlicensed boarding homes, also called board and care homes, long held up as a relic of the pre-Arnold v. Sarn past that never completely went away. There might be fewer than there used to be, but that’s difficult to know since no one in Maricopa County’s SMI system appears to be keeping track. The boarding homes operate under the radar for the most part—but police know they exist, sometimes answering hundreds of calls at a single address. Some have become hotbeds of violence, drugs and substandard living conditions.  

Responsibility for providing services to people with serious mental illness in Arizona falls to the state’s Medicaid agency, the Arizona Health Care Cost Containment System (AHCCCS). 

(A person doesn’t have to be Medicaid-eligible (Title XIX) to receive services. That said, non-Title XIX recipients do not qualify for as much. For example, they often cannot get name-brand medications. Chick Arnold thinks this should be litigated in the future.) 

In turn, AHCCCS contracts with Mercy Care, one of several regional behavioral health authorities in Arizona charged with providing services to people with serious mental illness. Mercy Care then contracts with individual providers who actually offer services like case management. 

The state’s Department of Health Services operates the Arizona State Hospital. 

AZCIR sent lists of questions to AHCCCS, Mercy Care and the Department of Health Services. 

Mercy Care did not respond to the list of questions. Earlier this year, a spokesperson turned down a request for an interview, and instead sent links to public reports on the AHCCCS website. 

In its response, AHCCCS wrote that the agency “takes all complaints and grievances about the quality of care seriously, and wants to obtain enough information to be able to fully investigate and resolve issues, whether they be individualized or systemic.“

With regard to ACT teams, AHCCCS wrote that, “Few communities around the country provide ACT to 4.3% or more of their adults who have SMI, whereas 6.6% of Maricopa County residents received ACT in 2019. 

“After an in-depth review, it was determined that only 29 of the top 100 service utilizers were on an ACT team because the remaining individuals either declined ACT level of service, did not meet diagnostic criteria for an ACT team, or they were already receiving a service that would be duplicative of ACT.”

And researchers “found that ACT team services were consistently provided once the need for services was identified.” 

AHCCCS did not respond to questions about methodology in the Arnold v. Sarn Quality Service Review.

In his agency’s response, DHS spokesman Steve Elliott wrote that federal privacy laws prevent the discussion of individual patients at the state hospital. 

“Patients are encouraged to file grievances when their concerns are not remedied at the patient treatment unit level. Hospital investigators educate patients through the grievance process investigation,” Elliott wrote. 

He did not address the issue of possible retaliation against patients who file grievances. 

With regard to the 55-bed limit at the state hospital, Elliott responded, “ASH operates according to the settlement of Arnold v. Sarn. It is not our place to offer an opinion on the terms under which we are required to operate.” 

Just about everyone involved in the lawsuit and settlement has an opinion—and doesn’t mind sharing it. 

Steve Schwartz, a national public interest lawyer who helped shut down psychiatric institutions in places like Massachusetts, was a plaintiff’s attorney in the case and signed off on the 2014 settlement. In an interview this spring, Schwartz said he’s pleased with the outcome. 

“They can’t go on forever,” he says of class action lawsuits, adding that he often refers to the successes of Arnold when working with other states on reforms. 

“The end point is never that all the people in the class are getting all the services,” Schwartz says. “That’s not going to ever happen. And so the end point has to be some blend that the majority of people are receiving a substantial portion of supports that allow them to do certain things, even though there are some big gaps.”

We let this group of people completely fail. To me, it’s the most inhumane thing that could ever be.

JOSH MOZELL

Chick Arnold retired at the end of 2020, handing his cases and his cause to a young lawyer named Josh Mozell, who has several years’ experience as a case manager in Arizona’s mental health system.

Mozell says he has his dream job—and it’s a nightmare. He contends that when it comes to treating the very sickest, the system is the worst it’s ever been.

“We let this group of people completely fail,” he says. “To me, it’s the most inhumane thing that could ever be.” 

Mozell’s cases include a man who says he was isolated after he screamed down a jail toilet at demons only he could hear; a man having a psychotic episode who was accidentally released from a mental health facility because he shared a first name with another patient; a woman whose mother chased her across the country and back to Phoenix, where she waited a year for a bed at the state hospital; a man whose son thought he could heat a frozen TV dinner still in the box on his stovetop and lived in filth even though he supposedly had the highest level of case management; and a man who ended up intubated in the hospital for six days after his case manager placed him in a group home with cats despite the fact that he’s deathly allergic.

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

“People don’t come to me when the system’s well,” Mozell says. “They come to me when the system’s doing poorly.”

Mozell represented Sommer Walter, Darren Beach’s half-sister, when she needed help getting guardianship of Beach in 2019.

Beach is now at the Arizona State Hospital. He waited a year for a bed. 

He decompensated further at the county hospital, according to Walter, and it’s been worse at ASH. 

“I hate to even say it out loud but Darren is actually more ill,” Walter wrote in an update to AZCIR in September. 

“He is more violent in his thoughts and is threatening harm to others and is very paranoid. He’s hearing voices that sound like “whispers.” 

“On my darkest days,” she wrote, “I have found myself driving to the hospital, parking across the street and weeping. Even though he’s here, he’s not really here. I’m mourning a living person and it’s such a hard way to live.”

Rachel Gold contributed reporting to this article.