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ACMI feels strongly that the IMD exclusion should be repealed!
Here is a nice article by Peter Earley discussing the same topic:
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.
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
ACMI wants to share a series of reports from Amy Silverman on the state of services for people with serious mental illness in Arizona.
On a hot June afternoon, Aaron Wallace attacked two older women, one in her 90s, at the Tucson boarding home where they all lived. Wallace, 39, has schizophrenia and had not been taking his medication.
According to the police report, Wallace wrapped his body around one of the women, “gouging” her face, then surprised the other from behind, hitting her over the head with an object in the kitchen, possibly a metal skillet. The injury required stitches. Wallace, bloodied after being restrained by an employee of the home, later acknowledged to police that he had been in psychosis and that the attacks were unprovoked.
Holly Gieszl, one of Wallace’s attorneys, says her client had little hope of succeeding in that environment. He had been released from the state hospital in February.
“The option in Tucson was homeless or an unregulated, unlicensed board and care facility,” Gieszl says.
Wallace did “okay” in the boarding home, she adds, “but depending on how he was doing with his medication and visits to his clinic, talking to his case manager, he would be erratic, very bad impulse control, and ultimately he got arrested.”
In recent years, advocates have adopted the mantra “housing is health care,” saying that a place to live is one of the most important indicators of success for a person with serious mental illness (SMI). But it’s got to be the right kind of care. Many consider boarding homes a thing of the past, yet those familiar with the mental health care system in Arizona know that even after 40 years of reform, for people like Aaron Wallace, the only other option can be the street. Today, case managers are prohibited from placing clients in boarding homes. Somehow, people with SMI still find them.
The manager of the boarding home where Aaron Wallace was living when he attacked the older women did not return calls from AZCIR.
The Arizona Health Care Cost Containment System (AHCCCS), the state agency in charge of providing mental health care to more than 43,000 Arizonans, did not respond to questions about boarding homes, either.
John Goss, the inspiration for the 1981 Arnold v. Sarn lawsuit that reformed Arizona’s mental health system, lived in a boarding home. So did other people with mental illness, particularly patients discharged from the Arizona State Hospital to the streets in the 1970s.
Laurie Goldstein, a board member of the Association for the Chronically Mentally Ill (ACMI), a local non-profit, says her son briefly lived in a boarding home several years ago.
“There was a mattress on the floor, no light in the room and the ‘hot meals’—they’d give them a sandwich and tell them to go out to a picnic table and eat.”
Today, there are people intimately familiar with the state’s mental health system who insist boarding homes are a thing of the past. Goldstein disagrees.
“They exist,” she says, “and they’re awful.”
Also known as board and care homes, boarding houses typically give people with chronic mental illness more freedom than another setting, like a state-licensed group home. Residents come and go as they please, and there tends to be less oversight, meaning it might be easier to use illegal drugs, skip daily medications and avoid therapy and other organized activities.
There is very little official information available on boarding homes. County health departments are required to license a home with a kitchen and five or more unrelated residents, so Maricopa County does keep a list of boarding homes. But the oversight stops there. There is no monitoring from the state Department of Health Services, which licenses other housing for people in the mental health care system.
For some, a boarding house is all they can afford. Often, a person with mental illness will turn over a chunk of their monthly social security check in exchange for a room and three meals a day.
A boarding house may also be the house of last resort because the mental health system has no other place for a person with serious or chronic mental illness to live. These unlicensed homes operate largely under the radar. For this story, AZCIR reviewed hundreds of pages of police call logs and reports from boarding homes in Tucson, Mesa and Phoenix.
The Tucson boarding house where Aaron Wallace was living had 101 calls for service between Jan. 1, 2020 and June 21, 2021, the day Wallace was arrested. A boarding home on 22nd Street in south Phoenix had more than 340 calls between 2018 and mid-2021, many of them flagged, “mentally ill subject.” In Mesa, one had more than 440 calls during the same time period.
People with mental illness often turn to boarding homes because there are few other options.
Some housing is provided by the U.S. Department of Housing and Urban Development (HUD)—but in Tempe, for example, only 26 of 42 vouchers were in use as of June 2021 because of a difficulty in finding housing.
The state recently reported a waiting list of 2,800 people in Arizona who qualify for supported housing specifically designed for people with mental illness.
There are people with mental illness that are being released from jail directly to the street.
AHCCCS took over control of the state’s mental health care system not long after the Arnold settlement agreement, and bureaucrats are aware of housing shortages—not only for people with SMI but others who are homeless. They are making efforts to fix that. AHCCCS recently applied for a Medicaid waiver that would increase housing options for the state’s most vulnerable, including people with mental illness.
But critics like Josh Mozell, an attorney who represents Aaron Wallace and handles dozens of cases involving people with SMI, say if you don’t provide strong case management along with housing, most people will fail.
Arnold v. Sarn, the 40-year-old lawsuit that called for system reform, did lead to the creation of a case management system to track and assist people with SMI, and for many years, case managers have been prohibited from placing clients in unlicensed boarding homes. But today, people like Aaron Wallace still find their way to such settings.
Jack Potts, a psychiatrist who chairs the Central Arizona Independent Oversight Committee, a volunteer group that monitors human rights conditions for people in the mental health care system in and around Maricopa County, says he’s asked AHCCCS to require the Regional Behavioral Health Authorities in charge of providing services to people with SMI to compile a list of boarding homes. Southern Arizona has such a list, which includes 73 homes as of early 2020.
Potts also thinks someone should be tracking how many people with chronic mental illness are living in boarding homes, adding that without a case manager’s intervention, people often suffer in silence.
“When someone’s quietly crazy and living in an unfit environment and they stay below the radar, you leave them alone. I think that the advocacy can be better but one of the other issues is case management.”
Boarding homes may be the mental health system’s dirty little secret, but members of the law enforcement community are well aware that they exist.
Amanda Stamps is a lead police officer and the crisis intervention team program coordinator for the Mesa Police Department, as well as the department’s point person on mental health.
She won’t talk about any specific unlicensed boarding houses for privacy reasons but is familiar with several in Mesa, and says they can be a problem because the staff is not trained to work with this “ultra vulnerable population.”
The Olive Press, a non-profit in Mesa that has billed itself as a domestic violence shelter, is one of the best examples AZCIR found of an unlicensed boarding home plagued with problems.
Between January 2018 and August 2021, police responded to 445 calls at the small residential complex on Mesa Drive, not far from downtown Mesa. The unmarked main entrance to the Olive Press is plastered with signs warning against trespassing and of video surveillance in progress.
On a recent Thursday morning, during a ride-along with a Mesa Police Department community officer, the spot was quiet; two men stood outside, chatting.
But it’s not always calm.
On the evening of Feb. 9 of this year, Mesa police responded to an emergency call at the Olive Press for a “man stabbing multiple people.” According to police reports, the house manager said the suspect had lived at the home for two years and that 20 people lived on site.
A witness told police she was visiting the home when she saw a man “push an older man down and begin hitting and kicking him,” then remove “an 8-inch long kitchen knife” from his pants and begin stabbing an older man, later identified as 80 years old.
The Mesa SWAT Team was dispatched and released gas to get the suspect to come out. The man emerged wrapped in a blanket. His hands were not visible. Police shot him with bean bags and a K9 bit off his little finger. He was taken into custody hours after the incident began.
It’s unclear from the police report whether or not the parties involved were mentally ill, but additional police reports confirm that people in the mental health system do live at the address.
For years, police have received reports that people at the home were “unable to reach case manager in 4 days,” “wanted to kill themselves with a knife,” “was intoxicated and threatening suicide by jumping into traffic,” or “could hear a female screaming as we stood there, but there was no noise.”
There were many calls for service regarding one woman. Deemed by the court to be mentally ill in 2010, she has been arrested in the past for prostitution.
In December 2018, police responded to a call at the boarding home because “she is rambling about being with the FBI.”
Two years later, in June 2020, the woman told police she was “hearing voices saying that her kids are being cut into pieces…says she knows who did it.” She was “ranting about how her doctor is a murderer and that he humiliates her everyday.”
In July of this year, she called police to say she “wants to turn herself in for prostitution” and later said, “her meds make her watch porn, she lost her legs when she was a stripper and that is why she got arrested but her legs ‘reaugmented’ and that is why she has legs.”
In August, she reported “she is being held hostage” and says there is a machine gun in the house.
At her request, the woman was transported to a mental health clinic.
Sarah Gomez, who operates Olive Press, cited privacy concerns and declined questions about residents with serious mental illness or Olive Press’ status as a boarding house. According to the organization’s website, as of Dec. 1, 2021 the house will only accept women.
Every time someone calls the police from a home like Olive Press, there’s the chance things could go wrong, says Stamps, the Mesa police officer.
“The reality of it is that when you invite the police to your house, we take over the situation. And we’re trained first for law enforcement,” she says. “We’re not always going to be able to get them the help they need….There are other resources that are better than tasers and guns.”
“A lot of the individuals are not receiving treatment or care,” she adds.
Stamps says police have an easier time working with group homes that are licensed by the state.
“The unlicensed ones pose very significant safety risks that we can’t address,” she says, as police often find “a lot of SMI population in one place that needs more support than the residence is able to provide. I think they might take advantage of people who can’t get into licensed facilities.”
Aaron Wallace has been in Arizona’s mental health system for 20 years. He’s lived in adult foster homes, on the street and at the Arizona State Hospital, where he was a patient on three separate occasions. While at ASH, he was stabbed twice by two different patients. Gieszl and Mozell sued on his behalf, and Wallace received a settlement from the state.
A December 2018 report to the Psychiatric Security Review Board said that he could be “maintained outside a secure facility” if “he could be placed in a highly structured and supervised placement, with an adequate supports in place.”
Wallace was released from ASH in February 2019 and returned to Tucson, where he’d been living.
Wallace shared his anguish in mid-May during a phone interview with AZCIR. Unlike many people with schizophrenia—who have no insight into their illness, a condition called anosognosia—at the time of the conversation, Wallace understood that he was sick.
“To be in my fucking head? It’s full of torture, it’s fucking full of demons, it’s hell. It’s suffering. Every fucking day of my life I think of killing myself, but I don’t,” he says.
Arizona’s mental health system has failed Wallace at every turn, according to his lawyers, Gieszl and Mozell, who say he was too sick to be released from the state hospital, too sick to take advice from his case manager (whom they say resigned from his case) and because of his history of violence, too sick to be placed in a licensed home designed for people with serious mental illness.
“The system had no place for Aaron. Nowhere for him to live,” Gieszl says. “They finally said, ‘There’s nowhere for you to go.’”
Wallace is now in Pima County Jail on assault charges.
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.
“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.
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.
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.
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.
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.”
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.”
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.
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.
“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.
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.
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.
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.
“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.
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.
“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.
According to the Treatment Advocacy Center, approximately 20 percent of inmates in jails and 15 percent of inmates in state prisons have a serious mental illness. Based on the total number of inmates, there are approximately 356,000 inmates with serious mental illness in jails and state prisons. This is ten times more than the approximately 35,000 individuals with serious mental illness remaining in state hospitals (Torrey et al., 2014). In addition, people with mental illness stay in jail and prison longer than people without mental illness. The recidivism rates are also higher for special populations:
54% re-incarceration for people with severe mental illness
60% for those with no diagnosis
66% for those with substance use disorders
68% for those with co-occurring mental illness & substance use
The high recidivism rates indicate the need for more integrated services upon release (Wilson et al., 2011).
The 30% in the illustration above, derived as the average from various studies, indicates a range of 20-45% (higher in jails than in prison, approximately 70% of this group have a co-occurring drug use disorder.) (Charles Goldstein, M.D., 2021)
It is punitive to punish people with mental illness by incarcerating them for minor crimes related to their mental illness rather than treating them in longer, more appropriate stays in psychiatric hospitals followed by appropriate community housing with supportive services.
Sadly, the nation’s jails and prisons have replaced hospitals as the primary facilities for people with mental illness. Having a conviction record comes with additional burdens post-conviction with far-reaching consequences, both legal and non-legal. These include loss of civil rights, inability to get a job, inability to live in specific apartments or upscale areas, and loss of public benefits (Chin, 2017), e.g., medical insurance through Medicaid. The effects on family and children can be devastating. “In 2010, for instance, an estimated 2.7 million children had an incarcerated parent.” (Turner, 2017). Children who grow up with an incarcerated parent have a much higher risk of becoming incarcerated, and eventually suffering collateral consequences of their own. They do more poorly in both cognitive and cognitive outcome measures (Morsy & Rothstein, 2016). In addition, the familial relationship to mental illness also contributes to poorer outcomes and the likelihood the children are at a higher risk for justice involvement.
There is a myriad of legal collateral consequences that attach to a criminal conviction. U.S. citizens can be barred from federal or state office, barred from certain professions, subject to impeachment as a witness, disqualified from serving as a juror, and lose the right to have a firearm. Noncitizens with criminal convictions can be deported. Sex offenders must register and are excluded from living in certain areas.
“Most people experiencing mental health disorders are not a threat to public safety. Yet a significant portion of the population of our jails and prisons remains comprised of people with mental health disorders. Our jails and prisons become, by default, the largest mental health facilities in the state; and far too often, people with a mental health disorder are released from jails and prisons without a treatment plan or support services in place.” Bronx DA Darcel Clark
The fact is the average parolee is a minority male in his 30’s, 30% have a mental illness, 20% have co-occurring mental illness and substance use problems, and return to economically disadvantaged communities (Turner, 2017). And now society expects them to overcome egregious collateral consequences to boot! These factors pose an uphill battle when it comes to regaining some sort of normalcy in life.
I think it’s evident that the best way to alleviate the burden of collateral consequences that disproportionately affect released offenders with mental illness (OMI) is to change the culture of the criminal corrective system. This would entail changing from the retributive to the rehabilitative/utilitarian model. Using community punishment and appropriate treatment instead of incarceration would be a much better option for OMI.
Torrey EF, Zdanowicz MT, Kennard AD et al. The treatment of persons with mental illness in prisons and jails: A state survey. Arlington, VA, Treatment Advocacy Center, April 8, 2014.
Wilson, A. B., Draine, J., Hadley, T., Metraux, S., & Evans, A. (2011). Examining the impact of mental illness and substance use on recidivism in a county jail. International Journal of Law and Psychiatry, 34(4), 264–268. https://doi.org/10.1016/j.ijlp.2011.07.004
This recent article below supports our opinion that jails and prisons are not therapeutic for people with serious mental illness often causing more harm.
Mental Illness In Solitary Landed These Men An Extra 842 Years In Illinois Prisons, Advocates Say
Warning: This article contains stories of people who have engaged in self-harm and attempted suicide. If you or someone you know is struggling with mental health, theNational Suicide Prevention hotlinenumber is1-800-273-8255.
Christopher Knox already had a long history of living with mental illness when he was sentenced to time in an Illinois prison. He has had a litany of diagnoses, including bipolar disorder and PTSD, and a history of self-harm going back to when he was just 7 years old. When he was locked inside prison at age 19, his mental health deteriorated. He lashed out at a fellow prisoner and he said he was sent to solitary where he was in a cell 23 hours a day, seven days a week.
“It caused me to go into the dark places that I never want to ever go again,” Knox said. “It put me in a mind frame where I didn’t care about anyone or anything. I just gave up. I had lost all hope.”
In solitary, Knox mutilated himself and attempted suicide multiple times. Other times he’d yell or throw things at staff. That too, he said, was a kind of self-harm. If he provoked staff, they may rush into his cell and violently drag him out. Those interactions gave him the painful sensations he craved, and he hoped maybe one day an officer might kill him so it could be over.
During 17 years in solitary, Knox was criminally charged for spitting on an officer and was sentenced to an extra five years behind bars. His conviction for kicking a guard added four more years. A conviction for throwing liquid soap at a guard’s face landed him another six. As he continued to get in trouble, what started out as an anticipated 11 years in prison turned into a projected 41 years behind bars, according to data from the Illinois Prison Project, an advocacy organization.
Jennifer Soble, executive director of the Prison Project, said she can’t imagine that Knox would have been charged with new offenses behind bars, let alone multiple cases, if he hadn’t spent so many years in solitary with little to no mental health treatment.
The project currently represents 43 clients it says have similar stories to Knox. They were all convicted of staff assaults, many for spitting or throwing urine on staff. According to Soble, all their clients have mental illness, and about 60% were on suicide watch at the time of the crime.
Soble said the prison environment, especially solitary, exacerbates people’s mental illnesses, and then the prison system punishes them for it. The punishments can be severe. The prison project said its clients have had an average of 15 additional years added to the time they expect to serve in prison — collectively, an additional 842 years.
This week the prison project plans to file 43 petitions for commutation that, if approved by the governor, would move up their release dates.
“This group is arguably some of the most vulnerable people in the prison system,” Soble said. “We can’t erase the psychological and physical harm many of them have suffered because of their time in solitary, however we hope to spare our clients hundreds of years of additional prison time.”
The Illinois Department of Corrections did not respond to multiple requests for comment. But staff assaults are a persistent problem. According to data from department reports, there is an average of more than 50 per month in 28 corrections facilities statewide.
Many of those occur at Pontiac Correctional Center, a prison about two hours outside of Chicago, where people with some of the most serious mental illness and disciplinary histories are housed. When Pontiac prison officials seek criminal charges for assaults, the cases end up on Randy Yedinak’s desk. Yedinak, the Livingston County state’s attorney, chooses which cases to charge.
He said that victims also deserve their day in court. “Contrary to popular belief, correctional officers do not sign up for this type of behavior when they choose to wear the uniform. It is not part of their job to be physically assaulted, have urine or feces thrown on them or be spat upon. They don’t deserve it. Simply put — it is a crime,” Yedinak said.
But Soble said the best way to reduce the violence is to end the conditions that make it more likely prisoners will act out — like solitary.
“They’re not doing these things because they’re evil”
A report from the United Nations said the prolonged use of solitary confinement can trigger psychological suffering, especially for prisoners who already had experienced trauma or struggled with mental health conditions. The report found that in such cases solitary can amount to torture. And in Illinois, experts say prisoners in solitary frequently report depression, bouts of anger and feelings of impending breakdown. Some experienced hallucinations, and more than one even reported playing with their own feces.
Anthony Gay said he understands why staff, and people on the outside, may hear about prisoners throwing urine and feces and assume that they are monsters that need to be disciplined. Gay said he spent two decades in solitary, and he now advocates for its elmination in Illinois. He said people in solitary are so hungry for social contact that even a guard dragging them out of their cell can feel like a relief.
“They’re not doing these things because they’re evil. They’re not doing these things because they hate correctional officers. They’re doing these things because they’re miserable,” he said.
While he was locked in solitary, Gay said he would cut himself so he could have some feeling of stimulation. And that was the same reason he would act out against staff, sometimes throwing urine at them. He wanted to provoke them.
“When they beat you up, you feel alive,” he said. “When they spray you with mace and it’s burning your skin, you come to realize, yeah, you’re still human. You’re still alive.”
The Illinois House passed a bill, named after Gay, that would prohibt the state from isolating prisoners for more than 10 days in a six-month period. But the bill has since stalled in the Senate.
The Uptown People’s Law Center, a Chicago nonprofit legal organization that focuses on prison litigation, is also seeking to eliminate long-term solitary in Illinois. They filed a class-action lawsuit arguing that the current use of solitary violates the constitutional rights of prisoners.
Meanwhile, the Illinois Department of Corrections reports it has reduced the use of solitary, or what it calls “restrictive housing.” In October 2020, the state implemented new rules limiting how long someone could be kept in restrictive housing and outlining minimum guidelines for mental health care.
Anders Lindall, a spokesperson for AFSCME 31, a union that represents guards and other corrections staff, said when Illinois prisons do impose solitary now, it’s not in the kind of horrible conditions that some people might imagine with absolute sensory deprivation, and no contact with other prisoners or staff. He argued “a safe and effective system needs the ability to use corrective — not punitive — measures to encourage good outcomes and discourage bad outcomes.”
Soble with the Illinois Prison Project acknowledges the department has made progress in limiting solitary, but said even if solitary is reduced or eliminated, the state still needs to do something about the men facing extra years and decades behind bars because of the way the state was using isolation.
Getting people out
The Prison Project’s strategy is two-fold. The group is filing petitions for sentence commutations on behalf of prisoners with serious mental illness who are serving time for crimes they committed while locked up. Illinois Gov. JB Pritzker has the unilateral power to grant those commutations. Asked about the Prison Project’s efforts, a spokesperson for the governor simply said, “The governor regularly reviews requests for clemency and will continue to review requests as they are made.”
The union for staff said it does not generally take positions on sentencing commutations, but said any effective system must have tools to discourage bad behavior, including assaults on staff or other prisoners.
The second part of the Prison’s Project’s strategy is harder to follow because of complicated state rules.
When people are sentenced in Illinois, most are entitled to so-called good time credits that can cut their sentence in half. But those credits can be taken away.
That’s what happened to Knox. Not only was he getting criminally prosecuted for assault charges, but the prison was also taking away his sentence credits.
The threat of losing “good time” is supposed to deter prisoners from acting out. But Knox said solitary put him in such a dark mind frame that the punishment did nothing to discourage his violent behavior.
“I didn’t care about going home. … I had lost hope. I thought I was going to die in prison,” Knox said.
But while Knox was locked up, the Uptown People’s Law Center won a legal victory that required the Department of Corrections to improve access to therapy and medication. Knox said he was able to see a counselor, get on the right medication and leave solitary. He stopped getting so many tickets for lashing out against staff. But the punishment for his previous actions remained — years more behind bars.
The Prison Project got involved in Knox’s case. They wrote letters and advocated to have his good time restored. The prison gave him back three years of good time credits, according to Soble and in 2020, Knox went home. Soble said the Department of Corrections has new rules that make it easier for people to have their good time restored, something she praised.
Besides Knox, the Prison Project says eight of their clients were released after they advocated for the department to restore their credits. But the group says there is still a long way to go.
After going home, Knox got a job at a factory putting together COVID-19 protective gear. He talks to his therapist three times a week.
“I’m trying to make the best of it that I can,” Knox said.
But Knox hasn’t forgotten his friends that are still locked inside.
“A lot of them are still being denied adequate mental health treatment due to lack of staff, and they are still dealing with solitary confinement,” he said. “A lot of people are still suffering, you know, and it needs to stop.”
Shannon Heffernan is a criminal justice reporter. Follow her @shannon_h.
I was speaking with a mother in crisis suffering through yet another psychiatric emergency with her adult son. His serious mental illness symptoms were frightening and possibly dangerous; he likely needed a medication adjustment. Easier said than done. His psychiatrist had been contacted, and an appointment was set. Before the appointment, there was an exacerbation of symptoms which resulted in a scuffle with a housemate and an assault. Nothing that required medical attention, not this time.
The house staff was inclined to call the police, but his mother begged them to call his ACT (Assertive Community Team) instead. Keep in mind he was already in a 24hr residential treatment center due to his serious mental illness. The ACT team concurred that her son needed to go back to a psychiatric screening agency for re-assessment. After going to the psychiatric evaluation center, they determined that he needed an in-patient psychiatric bed. After waiting in a recliner bed overnight, he went to one of the community psychiatric hospitals. The nurse practitioner from the community hospital did talk to the mother. If instead, he had ended up in jail and had been found guilty of assault, he would have lost his benefits. When a person with serious mental illness is sent to jail, often their medications are changed or missed for a while, so they come out requiring more extended hospital stays for stabilization.
Once he was admitted, the mother tried to talk to someone and provide them with his history. Her son has been ill for over 25 years. No one would talk to her even though she is his guardian. She called repeatedly. The phone is often not even answered. She finally reached the CEO as she often has had to do in the past; the staff ignore her requests for information. After that discussion with the CEO, communication improved marginally. But that did not stop a healthcare worker from refusing to send her son’s new medication regimen. The worker told her to call the CEO again; such blatant disrespect of guardians and families should not be tolerated.
Now contrast that with her recent experience with her husband, who had a medical emergency. He was quickly rushed to the hospital by paramedics. But unlike emergencies having to do with psychiatric crises, the police were not called. Had this emergency been due to a psychiatric problem, the police would have been called. Her son would have been cuffed and taken either to jail or perhaps a psychiatric evaluation center if he was lucky. Once at the hospital, everyone talked to her and included her in the decision-making process. There were many follow-up calls, and she did not have to escalate the issue to force people to communicate.
The treatment is of people with SMI in a psychiatric crisis is criminal. While we have parity laws, the reality is that we DO NOT have parity.
Worth reading: Attorneys, and ACMI Board members, Josh Mozell and Holly Gieszl wrote an in-depth piece about Arizona’s mental illness treatment system in this award-winning magazine. They focus on the 55 bed limit for Maricopa County at the Arizona State Hospital (ASH). They discuss the community treatment and the true interpretation of Olmstead. *Begins page 40. #mentalhealth#mentalillness#Arizona
On page 80 is an interview with the infamous Chic Arnold. Well done!