Dennis Winters sits in his apartment clutching a teddy bear, something a psychiatrist gave him years ago to make him feel less lonely.
Decades of punishing mental illness have often left Winters feeling lonely. Most days he watches television into the night and scribbles his thoughts into notebooks.
“I’m just hanging on by a thread,” he said.
Arizona taxpayers spent $360 million this year to help Maricopa County residents like Winters. But a nearly 30-year-old lawsuit, billions of dollars spent and a series of bureaucratic transformations haven’t changed a basic fact: Most of the county’s 23,000 patients with serious mental illness aren’t getting better.
The number of seriously mentally ill people in Maricopa County has exploded in recent years, growing by 94 percent since 2000. It will grow another 45 percent by 2015, according to state estimates.
There are few widely accepted national standards for mental-health care, making it difficult to compare the performance of states or even counties within Arizona. Different systems track data in a variety of ways.
But by the standards it has set for itself, Maricopa County’s system has declined.
The annual state audit of the system’s performance that was released this year found it fails nearly all of its patients on key measures: placing them in stable housing and providing them with a job or other meaningful activity.
Among those who have not been in jail or hospitalized for their illness, the system failed 86 percent. Among those who have, it failed 83 percent.
Interviews with patients, providers, state officials and company executives reveal instability at every level of the system. Despite multiple calls from consultants to do so, service providers do not track whether individual patients are getting better.
The results are deadly: Nationally, the life expectancy of a mentally ill person is 25 years shorter than that of a healthy person. In Maricopa County, their life expectancy is 32 years shorter.
Without a place to live, a job or supportive friends and family, the county’s mentally ill often wind up homeless or in jail.
Winters is 58. He once had a good job and close friends. But after more than three decades in the system, he now holes up in a subsidized apartment, hanging on to his ragged plush toys.
“It’s like knowing that this teddy bear is going to love me no matter what,” he said. “The worst thing is being alone, and having the risk of that part of me that just wants to give up. Holding on the idea that there’s a way out keeps us alive.”
Modern mental-health care starts with the presumption that anyone with a serious mental illness can recover, though some will recover better than others.
Most private insurance policies offer limited benefits for mental health, so people who have serious mental illnesses in Maricopa County are likely to wind up in the public system.
The system consists of several layers. At the top is the Department of Health Services, which is responsible for providing care to Arizonans with mental illness.
Since the 1990s, DHS has subcontracted the job to the private sector by creating regional behavioral-health authorities.
Two years ago, the state replaced the company that served Maricopa County, ValueOptions, amid widespread dissatisfaction with the quality of care. Magellan Health Services, a for-profit company based in Connecticut, received the three-year contract to run the system, which also includes patients with more moderate metal illness, children and people in treatment for substance abuse. At $1.5 billion, it is the largest mental-health care contract in America.
Magellan pledged to transform the system. Where ValueOptions had owned the county’s clinics itself, Magellan pledged to spin them off into independent networks of providers, giving patients more choices and clinics more control.
Magellan said the move would improve the quality of care.
But the changes brought even more instability. Instead of improving under Magellan, according to the most recent audit, patient care has gotten worse. The declines are substantial and occur in every aspect of care.
• Patients don’t have adequate teams of doctors, psychiatrists and counselors.
• Treatment plans, considered the foundation of a successful recovery, are incomplete and often changed without patients’ knowledge or input.
• Patients are overseen by case managers whose patient loads can exceed the national standard of 30 cases by 60 percent or more.
Magellan officials acknowledge the need to improve the quality of care on a variety of measures. But they also say the findings do not reflect substantial gains made since late last year, when the audit was conducted.
More than half of the audit’s quality indicators have no bearing on whether a patient’s condition improves, officials said. Other indicators, such as clinic staffing levels, have improved.
“The system is not in crisis. The system is in transformation,” said Dr. Richard Clarke, CEO of Magellan of Arizona.
Magellan has planned several new initiatives to improve performance. Clarke’s team is working with the state to post clinic performance data online for public viewing, encouraging better results through competition. Case managers will receive better training on suicide prevention. And patients with multiple recent hospitalizations are beginning to get extra attention from Magellan staff.
Eventually, Clarke said, the system will develop tools to track whether patients are improving – if Magellan remains in place.
A 20-year nightmare
In 1990, Tempe native Deborah Ferry watched her first husband pick up a gun and take his life.
That’s when the nightmares started. About once a week, Ferry dreams she is standing over his body, scrubbing blood off the walls of their Sacramento home.
The blood won’t wash off. There’s just too much.
Ferry moved to Nebraska after her husband’s death. Desperate and grief-stricken, she spent time in a state mental hospital. Eventually she recovered enough to live on her own. She married Roy Ferry, and they moved to Arizona to be closer to her family.
When Magellan took over the Maricopa County system, Ferry decided to enroll. She hoped to find a stable provider that would help her receive counseling for post-traumatic stress.
Instead, Ferry has had six psychiatrists and eight case managers in the past two years.
“I don’t even know who the current person is,” Ferry said. “They were supposed to call this morning, but they never did. That’s par for the course.”
Even before her first husband’s death, Ferry struggled with schizoaffective disorder, a broad diagnosis that for Ferry means bouts of severe depression and obsessive-compulsive behavior. She also hears voices.
Ferry hoped to recover under Magellan. Instead, she has been fighting the bureaucracy.
Last year, she was running out of medications when her private psychiatrist announced he would no longer accept Medicare. Ferry called Magellan to see if they could see her in two to three weeks. They said they could see her in three months.
Ferry borrows money from her 83-year-old mother to help pay for private therapy. She is entitled to subsidized therapy, but case managers haven’t stayed with her long enough to get it for her.
They rarely do. Last year, 71 percent of patients changed case managers.
Burnout is often cited as a reason for the rampant turnover. The heavy load means case managers respond to patients’ needs in a timely manner only 40 percent of the time, down from 59 percent before Magellan took over, according to the audit.
High turnover also results from case managers changing clinics, getting promoted or moving out of state.
For patients, the result is always the same: a new case manager, three or four times a year, who knows nothing about their case beyond what they have read in medical records.
In constant flux
The instability that Ferry feels day to day begins at the highest levels of the mental-health system, where tumultuous change has been the norm for 20 years.
In 1989, the Arizona Supreme Court agreed with the plaintiffs in Arnold vs. Sarn. The lawsuit alleged that Arizona failed to provide Maricopa County with comprehensive health care for those with serious mental illnesses as required by state law.
Two years later, the state launched the first of many plans to resolve the lawsuit.
The first Maricopa County service provider, non-profit ComCare, filed for bankruptcy in 1997, forcing the state to briefly take over. ValueOptions won the contract in 1998, and held it for nine years. Magellan has had the contract for two years. Now plaintiffs in Arnold vs. Sarn want the state to drop Magellan and have the Department of Health Services oversee clinics directly.
Constant change isn’t limited to the big vendors.
Since 1993, nine different people have led DHS. The most recent, Will Humble, was named interim director in January.
Seven different people have led the DHS behavioral-health division in that time. Dr. Laura Nelson took the job in April 2008.
Nelson acknowledged the high turnover at her agency.
“It’s a constant struggle, especially under the budget conditions we’re in, to hold on to good staff,” she said.
The instability trickles back down to patients, with each new director, agency head and contract provider bringing changes to policies and procedures.
As a result, the services patients receive are frequently changed or even eliminated without their knowledge.
A steady hand
People with mental illnesses can recover. Stable care is usually a key to successful treatment.
Amy Sather, 35, endured an abusive childhood that left her in foster care and group homes from the age of 13. At 19, she was pregnant, on food stamps and suffering the effects of bipolar disorder. Later, she lost custody of her daughter and became homeless.
But over a period of years, Sather received treatment from Maricopa County’s public mental-health system that made a significant difference. A caseworker helped her get subsidized housing. Counselors helped her control the of her disease.
She eventually regained custody of her daughter, got a job working as a peer mentor for other people with mental illnesses and earned her bachelor’s degree in social work. Today she is happily married, lives in a five-bedroom house in south Phoenix and works for the Department of Behavioral Health Services as a liaison between the state and individuals and families with mental illnesses.
Sather faced the same turnover that plagues most patients. But she found a rare point of stability in the system: She saw the same nurse practitioner for more than 10 years. The practitioner prescribed medicines and helped Sather put her life back together.
“She supported me,” Sather said.
Sather knew how to navigate the system better than most, having worked as a case manager for ValueOptions before becoming a peer mentor. She also benefited from a strong ethic and a desire to provide a better life for her daughter, Hayley.
“Every morning she’d wake up and go to work, no matter what had happened the night before,” said Hayley, 15. “Paint that smile on and keep on trucking.”
Still, Sather says, consistent care provided a foundation for her to recover.
“I got lucky,” she said.
Not paying attention
Despite the hundreds of millions of dollars spent, at no level does the system track whether individual patients are improving.
A patient like Dennis Winters can languish in the system for 30 years, gradually declining, and no one beyond the latest manager of his current clinic will ever know.
“They spiral down in their crisis to the point where once they’re finally served and treated appropriately, they’ve lost so much ground,” said Anne Ronan, longtime lawyer for the plaintiffs in Arnold vs. Sarn. “They’re out of school. They’ve lost their job. And if someone had just responded appropriately when the obvious signs were there, they would be back on their feet.”
Delayed treatment can result in trips to urgent-care facilities or even hospitalizations, which cost far more than clinical services.
The primary measure of the system’s performance comes from the Office of the Court Monitor, a taxpayer-funded branch of state government established to monitor Maricopa County’s compliance with Arnold vs. Sarn.
The court monitor audits a sample of individuals each year, asking hundreds of questions about their care.
State officials and various service providers have recognized the need for improvements but downplay the audit’s findings. They say it’s based on an old model of treatment, and makes unreasonable demands of providers.
Still, the audit was developed with the state’s input. And state officials agreed that audit findings would be binding.
Between annual audits, DHS receives dozens of weekly and monthly reports from Magellan about the system’s performance. But the data is largely self-reported, and its reliability has been questioned.
Magellan is now working with the state to put together a “dashboard” that lets executives see, at a glance, how various clinics perform on a variety of measures. In the near future, Clarke said, those results will be available for all to see online.
Humble said the dashboards mark the beginning of a more accountable system.
“That could be used to spur competition, but also to hold (providers) accountable for the services that they’re providing and the money they’re getting,” he said.
A steady decline
Before he relied on teddy bears for companionship, Dennis Winters was a hairdresser known for his quick wit and mordant sense of humor.
He worked at upscale salons in Scottsdale and had plenty of friends.
“He was very outgoing,” said Anna Kashey, a fellow hairdresser who met Winters in 1992. “He was very nice, very warm.”
When his mother became ill in the mid-1990s, he quit working to take care of her. She died shortly thereafter, and Winters’ mental health started to decline.
For two years, Winters says, he lived in a house with no electricity or water. Eventually he became homeless, staying at the YMCA and at shelters.
Through it all, he continued to receive care through the county mental-health system. Medical records from earlier this decade list Winters’ goals: reclaim his beauty license, buy a house, get into a relationship.
Instead, he declined.
Winters had frequent disagreements with doctors and case managers over the quality of his treatment. Records show several therapists became frustrated with Winters’ windy, tangential mode of speaking and his frequent complaints about the quality of care he received.
So they quit being involved in his treatment.
“Due to the level of conflict that keeps occurring which interferes with therapeutic progress,” one therapist wrote, “I must remove myself from your case.”
When ValueOptions was treating Winters, his clinical team at the time gave him a progress report on his goals. It was blank.
Today, Winters says he wants treatment from a center that specializes in dissociative identity disorder. After his mother’s death, he lost track of time and sometimes re-emerged with a different personality.
Winters’ clinical team, he says, has failed to help him recover.
“More and more,” he said, “I feel like the chances of me ever leading a normal life are zero.”
The money factor
Given the county’s rapid growth of the seriously mentally ill population, state officials say they don’t have the resources they need to provide adequate care.
In 1995, the state formally agreed to provide a wide variety of services to the mentally ill as required by the Arnold vs. Sarn lawsuit. Three years later, a review found that it would cost more than three and a half times as much as the state was then spending to meet those obligations.
Instead, the system’s budget has been cut. In the most recent fiscal year, Magellan’s contract was reduced by about $10 million. DHS has absorbed $55 million in cuts in the past two years and faces additional cuts this year.
Chris Heller, a former director of a clinic in Maricopa County, said the state has asked too much of Magellan and its predecessors.
“They dangle a billion and a half dollars out there and one of those companies comes along and bites, because they’re going to try to make it work,” Heller said. “And they get in here and they realize it’s a lot of money, but it’s not nearly what it takes. It’s not all the vendor. The state is cutting an unrealistic deal.”
Maricopa County Superior Court Judge Karen O’Connor has asked the state to prepare a progress report. A status conference in the Arnold vs. Sarn case is scheduled for Sept. 17.
For all its faults, Amy Sather said, the system can help people get better.
“I meet people every day where they’re having successes in their life because opportunities and services were in place to serve as stepping stones to getting where they are today,” she said.
Dennis Winters isn’t so sure.
“If I stay here, I’ll die,” he said. “This state is going to kill me.”