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.
This would be a troubling predictor if accurate. Childhood obesity is growing at an alarming rate in the United States. According to the CDC, Pediatric obesity is now of epidemic proportions in the United States. Pediatric overweight and obesity now affects more than 30 percent of children, making it the most common chronic disease of childhood. We may face a tsunami of mental illness with psychiatric disorders in the future.
Physical conditions such as insulin resistance and weight gain, which are known to commonly co-occur with psychiatric disorders like psychosis and depression, could be detectable years before the onset of the psychiatric disorder, researchers recently reported in JAMA Psychiatry. Below, researcher Benjamin Perry, MRCPsych, of the University of Cambridge, England, explains the reasons for the study, clinical implications of the findings, and directions of future research.
Q: What led you and your colleagues to study the link between childhood insulin levels and later mental health problems?
A: We chose to conduct this study for a few reasons. There is good evidence from meta-analyses and other observational studies that early signs of developing physical health problems, such as insulin resistance and weight gain, can be detected right at the onset of psychiatric disorders such as psychosis and depression in young adults. Left unchecked, this can lead to type 2 diabetes, obesity, cardiovascular diseases and ultimately an early death. Sadly, people with psychosis and depression live on average 10-15 years less than the general population, mostly because of physical comorbidity.
However, most of the existing research in the field has been cross-sectional, and/or has included people who already have a diagnosis of psychosis or depression. Therefore, it’s been difficult to disentangle the direction of association (ie, the chicken and egg. What comes first – the physical or the mental health problems?). Also, previous research has mostly included single-point measures of cardiometabolic markers, yet repeat measures of these markers provide much greater resolution into potential underlying biological pathways. In our study, we aimed to address those limitations.
Q: Please briefly describe your study method and the most significant findings.
A: We were fortunate enough to be able to access data from the Avon Longitudinal Study of Parents and Children (ALSPAC), which is a United Kingdom (UK) population-representative cohort study of around 15,000 participants who have been followed since birth. ALSPAC is a really rich resource, so we were able to include a number of repeat measurements of body mass index (BMI) and insulin levels from early childhood through early adulthood. We used a statistical technique called growth mixture modeling to delineate distinct trends of BMI and insulin levels through childhood and adolescence. Then, we examined whether any specific cardiometabolic developmental trajectory was associated with psychosis and depression in adulthood, after taking into account a number of other possible explanations (confounders).
We found that a trend of persistently high insulin levels from as far back as age 9 years was associated with a higher risk of psychosis in adulthood. We also found that BMI increases around the age of puberty onset were strongly associated with a higher risk of depression in adulthood. These associations remained after taking a number of potential alternative explanations into account, including sex, ethnicity, social class, physical activity, smoking, alcohol and substance use, sleep problems, calorie intake, and childhood behavioral and emotional problems.
Taken together, the findings from our study suggest that the cardiometabolic comorbidity so often attached to adult depression and psychosis may have early-life beginnings, and may be detectable long before the onset of depression or psychosis, at least in some individuals.
Q: Were any of the outcomes surprising or different than expected?
A: Perhaps the main thing that stood out for us was that there appeared to be distinct associations between childhood/adolescent trends of BMI and insulin levels with depression and psychosis respectively. Disruptions to glucose-insulin homeostasis and obesity often go hand-in-hand since they predispose to each other; this may explain why people with depression and psychosis have similarly higher rates of both obesity and type 2 diabetes mellitus than the general population, particularly in chronic illness. Our results however suggest the biological mechanisms underlying this comorbidity may be different in people suffering from psychosis compared with depression.
Q: Do you feel there are any near-term applications of these findings in clinical practice?
A: Our findings underscore the crucial importance that all young people presenting with symptoms of depression and psychosis receive a full and comprehensive work-up of their physical health. Intervening early is the best way to improve long-term health outcomes, both physical and psychiatric, and is the best way to reduce the mortality gap sadly faced by people with depression and psychosis.
Q: Are you doing any more research on this topic, and are there any other studies you feel are needed?
A: We do have a number of other studies at various stages of completion which we are really excited about, and the present study really is only the beginning. For example, we don’t know how/why insulin levels might be raised from childhood and how this might increase the risk of psychosis in adulthood.
We also don’t know exactly why BMI increases around the age of puberty onset might predispose to depression in adulthood—particularly when the evidence for this was much stronger than for an association of persistently high BMI levels throughout childhood and depression in adulthood.
We are also motivated to conduct research that can benefit patients directly, for example with studies that might help clinicians more easily recognize the cardiometabolic risk of young people with depression and psychosis. Early intervention is the best way to improve longer term outcomes, both physical and psychiatric, and help to close the mortality gap sadly faced by people who have depression and psychosis.
Benjamin Perry, MRCPsych, is an academic clinical psychiatrist based at the University of Cambridge, England. He is funded by a fellowship from the UK National Institute for Health Research. Dr. Perry is passionate about improving our understanding of why people with mental disorders such as psychosis and depression suffer from a higher prevalence of physical health problems than the general population, and in finding the best ways to reduce this health inequality.
Photo from Harvard children’s health blog By Nandini Mani, MD,
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.
Here is the executive summary, taken from their full report (Eide & Gorman, 2021):
Inpatient psychiatric care forms a crucial part of America’s mental health system. Though most mental health services are provided on an outpatient basis, treating some serious mental illnesses requires a hospital setting. Inpatient treatment may be provided in a general hospital unit or a specialized psychiatric hospital. Within the context of Medicaid, specialized psychiatric hospitals are known as “Institutions for Mental Diseases,” or IMDs.
Federal law generally prohibits IMDs from billing Medicaid for care given to adults between the ages of 21 and 64 at a facility with more than 16 beds. This “IMD Exclusion” has been in place, in some fashion, since Medicaid was enacted in 1965. The intent was to prevent states from transferring their mental health costs to the federal government and to encourage investments in community services. The IMD Exclusion achieved its desired effect by contributing heavily to what’s popularly called “deinstitutionalization,” the transformation of public mental health care from an inpatient-oriented to an outpatient-oriented system.
This report argues that the IMD Exclusion has outlived its usefulness and should be repealed. It discourages states from investing in inpatient care, hampering access to a necessary form of treatment for some seriously mentally ill individuals. As a result, these individuals end up repeatedly in the emergency departments of general hospitals, “boarded” for lack of access to available beds, and overrepresented among the homeless and incarcerated populations. More broadly, the exclusion discriminates, through fiscal policy, against the seriously mentally ill.
Concerns that repealing the IMD Exclusion would lead to a mass re-institutionalization of the mentally ill are overblown. The population of public psychiatric hospitals today stands at about 5% of what it was before deinstitutionalization. Individuals in need of mental health care have access to a much greater diversity of programs and public services than existed before the 1960s, when institutional care was often the sole option. Strong legal regulations also now exist that did not exist when Medicaid was first passed—most notably, the “integration mandate” of the Supreme Court’s Olmstead ruling, which requires mentally ill individuals to be provided services in the community when those services are appropriate, are not of objection to patients, and can be reasonably
Interest in repealing the IMD Exclusion has increased recently in response to a concern over bed shortages for the seriously mentally ill and persistent challenges with mental illness-related homelessness and incarceration. There have also been signs of bipartisan interest in a full and clear repeal. Under the Biden administration, mental health-care reform, beginning with the repeal of the IMD Exclusion, may present an opportunity for substantive bipartisan policy reform.
Eide, S., & Gorman, C. D. (2021). (rep.). Medicaid’s IMD Exclusion: The Case for Repeal (pp. 4–10). New York, NY.
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!
Most folks reading our blog know the long disturbing history of how we have gotten to such a sad place in the US in our treatment of people with serious mental illnesses. You may find it interesting, as I did, to learn that President Reagan made a major change (see below), which resulted in diminished community resources.
“That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.”
We need a federal plan that also involves the removal of the IMD exclusion. This mental health treatment exclusion is a parity violation. There is no such restriction on the length of stay or the number of medical beds in hospitals for medical conditions. Learn more about parity laws.
We need to focus on the people with SMI and not just general mental health!!
Original article published by StatNews on July 9th by Allen Frances
President Biden’s ambitious infrastructure plan has a glaring omission: It makes no effort to redress the awful reality that the United States has the worst mental health infrastructure of any country in the developed world.
People with mental illness, their families, and society at large are suffering the tragic consequences of four decades of mental health defunding and privatization: 90% of psychiatric beds have been closed; the once-wonderful system of publicly funded community mental health centers has been gutted; crisis response teams are almost nonexistent; and the available pool of affordable housing meets only a fraction of what’s needed.
In the Middle Ages, people with severe mental illness were often chained in prisons, begged on the street, or languished in poor houses. In modern America, 350,000 people with mental illness are in jails or prisons (often for nuisance crimes that could easily have been avoided had treatment been available); 250,000 of them are homeless; and the average life span of those with severe mental illness is 20 years less than that of the general population. The rate of dying from Covid-19 was three time higher among people with schizophrenia than in the general community — the second biggest risk factor after age.
Law enforcement officers, sheriffs, and judges have become the most vocal critics of the brutal criminalization of mental illness and are now among the strongest advocates for improved community treatment and housing. Forcing scared and untrained police officers to be first responders for people with untreated mental illness puts them in untenable positions and is partly responsible for police brutality and shootings. People with untreated mental illness are 16 times more likely to die during a police encounter than other civilians.
And once in jail, people with mental health issues are difficult to manage, deteriorate further, spend disproportionate time in solitary confinement, and have prolonged stays (especially since they have no place to go and no treatment if released).
How did the U.S. get into this mess? Massive and rapid deinstitutionalization of people with mental health issues began in the late 1950s for several reasons: partly because effective antipsychotics had been discovered; partly as a humanitarian response to the horrors of the overcrowded “snake pit” state psychiatric hospitals; partly as a cost-cutting method (since mental health was often the biggest and most tempting item in state budgets).
The “new approach to mental illness” that President John F. Kennedy called for in a 1963 speech, which resulted in his signing into law the Community Mental Health Centers Act later that year, was a response to the great disruption caused by the rapid closure of the huge state hospitals. Community services were meant to provide a better life for people with mental illness at less cost to the states.
My first job working in a community mental health center in 1973 in New York City was thrilling. Patients who had languished for decades in state hospitals were able to enjoy much more normal lives with the benefits of medication and inclusion in the community. The U.S. became the world leader in community psychiatry and I was proud to be a psychiatrist.
That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.
And the money saved by closing the expensive state psychiatric hospitals rarely followed patients into their communities to provide badly needed treatment and housing. Community mental services either closed or were privatized, and the newly private services routinely refused care to people with severe mental illness because they were usually uninsured and always very expensive to treat.
Eventually, deinstitutionalization turned into reinstitutionalization as prisons replaced hospitals as the biggest line item in state budgets. Under Reagan, the U.S. quickly went from having the best system of community psychiatric care in the world to the worst, and things have further deteriorated ever since.
It is not clear how much of Biden’s extensive physical and human infrastructure rebuilding plan will eventually be enacted into law. But it is crystal clear that rebuilding our country’s shamefully lacking mental health system is not part of the plan.
It is also clear why. Powerful lobbying forces in Washington are fiercely jostling to capture the money allocated to the infrastructure program. Whatever emerges will reflect how much political and economic muscle each industry can exert on the politicians doing the horse trading. In this battle of the titans, people with mental illness are voiceless and their advocacy groups lack political and economic muscle.
The care of people with severe mental illness is necessarily a public responsibility that has been neglected in our primarily for-profit private health care system. The United States has shirked this public responsibility more than any other developed nation on earth. The Biden plan is a sad lost opportunity to play catch-up on desperately needed mental health services and its exclusion of mental health means there is no hope in sight.
Mahatma Gandhi once said that a nation’s greatness is judged by how it treats its weakest members. By this standard, the United States is morally bankrupt and the very opposite of great.
Allen Frances is a psychiatrist, professor and chair emeritus of the Duke University Department of Psychiatry, and was chair of the DSM-IV Task Force from 1987 to 1994.
ACMI would like families and members to submit feedback on their experiences with Court Ordered Evaluation / Court Ordered Treatment (COE/COT). Arizona has some very smart laws in this area. There is ample protection for individuals’ liberty, safety, and long-term recovery. All individuals undergoing COT are provided attorneys, all COT orders are subject to review, and the individual on COT can ask the court to review a COT order to either modify or terminate the order if appropriate. Our current COT process protects the individual while assuring them of treatment. It saves lives.
Provide feedback to help AHCCCS strengthen the process to ensure our loved ones experiencing a psychiatric episode get timely and appropriate care.
In response to the Committee’s recommendations, AHCCCS has created a Court Ordered Evaluation / Court Ordered Treatment (COE/COT) committee. The goal of this committee is to develop an effective and standardized statewide training on Court Ordered Evaluation and Treatment. This training will include individual county processes, resources, and peer and family member perspectives.
OIFA’s statewide are collaborating to gather the peer and family member voice and experience with the COE/COT process. Please help us by completing this survey.