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.
by Amy Silverman October 19, 2021
Crisis in mental health care: A place that should know better (azcir.org)
In July 2017, a man in khaki shorts and a blue pullover walked through an empty office at a center for LGBTQ youth in Phoenix with a red can, pouring gasoline on the floor as he left the building. Immediately, flames erupted then engulfed the room.
Darren William Beach Jr. later said his grandmother told him the building was killing her. She had passed away five years earlier.
Two days before the fire, Beach had been evaluated for treatment for mental illness at a local psychiatric facility after he’d been pulled three times from a canal. The hallucinations, he claimed, were demanding he take his own life. The facility released him to the street.
After a year in jail following the fire, Beach went to live with his half-sister, Sommer Walter, and her family, including two small boys. Walter didn’t feel like she had an option. “They were going to release a mentally ill man who had just burned a building down to the streets,” she says.
A week later, Beach was still waiting to be assigned a case management team to help him find housing and manage his medications when he began telling Walter he was a debt collector for the Hell’s Angels. They argued when he threw a cell phone, and Beach left.
Days later, Walter got a call from a nurse at a local hospital. “They said Darren had been found in the middle of Encanto Park, passed out.”
He’d taken a large dose of lithium, tested positive for meth and there was blue paint on his face, apparently from eating or huffing it, Walter says.
Beach bounced among “residential treatments, substance abuse programs, halfway houses/shelters that myself and my family had to pay for and mobile shelters, where he’d sleep at a new church every night,” Walter explains. “Sometimes he’d even just be left to the streets.”
He was hospitalized a total of 16 times in 18 months. When he stayed at her house, Walter says she found weapons in his backpack—brass knuckles, box cutters, a broken off baseball bat.
“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.
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