True or False: Three out of four patients with schizophrenia report substance use.
A review of electronic medical records of patients with schizophrenia spectrum disorders in a community teaching hospital’s psychiatric unit found that more than three-quarters used substances such as tobacco and cannabis. Researchers presented their findings in a poster at the virtual 2021 American Psychiatric Association Annual Meeting.
Among patients with schizophrenia, 62.3% used tobacco, 41.5% used cannabis, 40.2% used alcohol, and 27.4% used cocaine. In patients who reported using tobacco, unadjusted odds ratios were 7.24 for comorbid alcohol use, 5.00 for cocaine use, 4.62 for synthetic cannabis use, and 2.80 for cannabis use, according to the study. Multivariate analysis results supported the findings.
With that information, one would hope that the behavioral health providers would do a better job at treating dual diagnosis individuals. Often families of loved ones that have serious mental illness and substance use disorders hear that the person needs to get sober before mental health treatment can be effective. However, they are also then told that the person is too ill to be in the substance use treatment because of their serious mental illness. Kind of a Catch 22 situation. Treatment needs to address both illnesses.
The program’s principles, practices, and evidence by Dr. Sam Tsemberis, who is a nationally recognized expert.
May 11th, 2022 from 6-7:30 pm AZ time (PST)
Dr. Sam Tsemberis, the clinical psychologist that developed the Housing First program to stem homelessness for people with serious mental illness and addiction.
In 1992, Dr. Tsemberis founded Pathways to Housing, based on the belief that housing is a basic right for all. Pathways developed the Housing First model that provides immediate access to permanent supported housing; independent apartments and intensive treatment and support services for individuals who are homeless and who have mental illnesses and substance use disorders. The program uses a person-centered harm reduction approach and does not require participation in treatment or sobriety as a precondition for housing. Housing First is recognized as an evidence-based practice, having been successfully replicated and evaluated in numerous settings across the United States and internationally. Dr. Tsemberis is a clinical-community psychologist and serves on the faculty of UCLA. He also serves as principal investigator for several federally funded multi-site studies of homelessness, mental illness, and addiction, and has published numerous articles and book chapters on these topics.
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
Andy Arnowitz of Cope Heath has just released an Advocacy Guidelines pamphlet with forwards by Chick Arnold and Dr. Shar Najafi-Piper. This is full of useful information for advocates as they navigate Arizona’s behavioral health system.
Today is giving Tuesday! Launched in 2012, Giving Tuesday is known as the global day of giving. Please join us in advocating for people with serious mental illness by showing your support. People like you have donated money to help ACMI reach our previous goals. Ever dollar counts! Please consider what can you can contribute.
Today only, a generous donor is matching all gifts made, dollar-for-dollar, up to $15,000!
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.”