There was time to assist Paul Schmidt however county politics acquired in the best way
This story was originally published Oct. 5, 2013, as
part of the series “Chronic Crisis: A System That Doesn’t Heal.”
The farther north Verna Schmidt rode that sweltering July day, the more she worried about her son, Paul, back in Milwaukee in his second-story apartment with its sour-smelling carpet and grimy windows.
He’d been falling down and shaking more than usual in recent weeks. Between his diabetes, hypertension and schizophrenia, Paul, 42, was on at least 13 medications and some could be deadly in the heat — especially for a man who stood 6-feet-2 and weighed 265 pounds.
Paul Schmidt in 2012.Gary Porter, Milwaukee Journal Sentinel
He could not feel the heat the way most people do. The medicine he took to stop his hallucinations interfered with his body’s ability to sweat. His blood vessels would stay dilated. When that happens, pressure can drop in the heart and, like a motor low on oil, it can burn out and die.
Verna and her husband, Paul, repeatedly asked their son to come along for their family reunion weekend in the Upper Peninsula. But he refused, preferring to sit alone in his bedroom and listen to music. Verna had told her son — begged him, really — to turn on the air conditioner, to stop and take a cold shower every once in a while.
By 3 p.m. on July 5, 2012, it was a record 103 degrees. Radio newscasts reported cows collapsing in farm fields and chunks of highway concrete buckling.
Verna looked out the car window and saw ripples of heat waving at her from the pavement.
Herzl Spiro, a Harvard-educated psychiatrist with a courtly manner and wide smile, came to Milwaukee in 1975 with no smaller goal than to revolutionize the county’s mental health system.
A system that doesn’t heal
Milwaukee County’s mental health system focuses less on
continual care and more on emergency treatment than any in
the nation. Despite scandals, studies and promises of
reform, the system is like many of its patients:
It never gets better.
He had been recruited as medical director of the public mental health hospital after writing a national journal article on the need to develop a system of care beyond the gates of dehumanizing asylums.
Most of the county’s 3,000 psychiatric patients did not need to be locked up like criminals, he told the Milwaukee County Board committee considering his appointment. They could live better at home.
“I know we can build a kinder system,” he told them.
The system Spiro envisioned would have inpatient care at the hospital on the County Grounds in Wauwatosa for only those who were severely ill. Most of the patients could live in their own homes, and care would be provided at clinics spread across the county’s 241 square miles.
At the time, Paul Schmidt — PJ, as he was known then — was 5, an easygoing tow-headed boy who lived less than a mile from the land where the new hospital would be built. In the years to come, he would climb apple trees and play “Ghosts in the Graveyard” there with the kids down the block.
It would be years before he would begin to withdraw and make plans to kill himself.
There was plenty of time to build a system that could help him.
Today, Milwaukee County has the most lopsided mental health system in the country, weighted down with administrative overhead and expensive inpatient costs. Each year, more than 13,000 cycle through the psychiatric emergency room — the same number as two decades ago — while the needs of those living in the community remain largely unmet.
The county devotes 56% of its mental health spending to expensive emergency and inpatient care, 20% more than the national average. Despite calls for reform, the system’s cost for emergency care rose 14% over the past three years, while spending for care in the community languished.
In 2002, spending for community care for adults accounted for 19% of the Behavioral Health Division’s budget. Last year, it fell to 16%.
More than $14 million a year doesn’t go toward services at all.
That money goes to fund pensions and benefits for former workers, including costs tied to a sweetheart deal approved by the County Board in 2000 that created massive lump-sum payouts for workers and prompted a wave of early departures. If that amount were spent on services, it could provide case management for twice as many people — some 2,500 who are too sick to manage on their own.
“It would be a lot easier to do the things we need to do without those legacy costs,” said Milwaukee County Executive Chris Abele. “We’ll just have to work around them. The patients we serve deserve that.”
Abele has proposed $4.9 million in the 2014 budget for measures designed to reduce the number of patients kept in the county hospital’s long-term care units while enhancing services in the community. But there is no guarantee it will be approved by the County Board, and unions are fighting proposed staffing cuts.
The new money won’t make much difference unless the county can break its decades-long pattern of ineffective management and shortsighted decisions — ones that leave millions of federal dollars on the table every year.
When it comes to providing care outside the hospital, local taxpayers have long paid the entire cost. If the county took advantage of a four-year-old federal program, one that would provide more services, local taxpayers would be responsible for just 40% of the cost.
Supervisor Michael MayoI know you are here for advocation of the mentals. But our taxpayers can’t afford this program.
There are about 3,200 people with severe and persistent mental illness who could qualify for the federal program, but they are not even being screened to see if they are eligible.
Once people are deemed eligible, they must get the services, and County Board members fear the county won’t be able to pay its portion of the bill.
“I know you are here for advocation of the mentals,” Supervisor Michael Mayo told those who came to a June meeting of the board’s Health and Human Needs Committee. “But our taxpayers can’t afford this program.”
Mayo, who backed the pension deal in 2000, voted against joining the federal program, which is already in place in Minneapolis, St. Louis, Philadelphia and 37 counties in Wisconsin. The measure ultimately passed, but only after administrators pledged not to enroll more than 192 in the first year.
At that pace, it could take more than 15 years to bring everyone eligible into the program.
For decades, outside consultants have pushed county policy-makers to expand mental health care in the community. Instead, by many measures, service is scarcer today.
There are 316 fewer people assigned to a caseworker than there were just two years ago.
In January, 170 people received outpatient therapy at agencies that contracted with the county. In July, that number was reduced to 21.
Last fall, elected officials munched on chocolate chip cookies and toasted the opening of a new county-funded Crisis Resource Center. The idea was that Community Advocates, a private agency, would provide spots for 12 people to stay temporarily instead of being housed at the Milwaukee County Mental Health Complex, where care costs $1,400 a day.
But many of the beds were never used because the county didn’t send enough people there and in July county officials shut it down. They didn’t cite problems with the care, but paperwork errors and that the agency hadn’t completed hiring a medical director.
Meanwhile, the county-run psychiatric hospital has been cited eight times since 2006 by federal regulators for putting patients in “immediate jeopardy,” including the starvation death of a patient, the sexual assault of a patient who became pregnant, and the death of a 25-year-old whose complaints about his broken neck were dismissed as psychosomatic.
Legal bills from the starvation case alone topped $500,000.
This was the system that was supposed to keep Paul Schmidt safe on that stifling July day.
Spiro’s first order of business when he arrived in 1975: Tear down the 105-year-old twin hospitals known as North Division and South Division, where frost clung to the walls and streaks of mold lined the windows.
As medical director, Spiro helped design a system that would divide the county into seven zones. Each would have its own neighborhood clinic, where patients could get their medicine and receive therapy.
The main hospital would be reserved for emergency cases and those who were acutely ill or in need of intensive, long-term care. The new building was designed to look like a drive-in hamburger stand, circular and approachable. It would serve as the hub with the community centers dispersed across the county like spokes on a wheel.
“It was very exciting to be in on the planning,” Spiro said, recalling the architect’s unusual design.
Cities all over the country were revamping their care of people with mental illness. The anti-psychotic Thorazine, discovered 20 years earlier, was now in wide use. Many who were severely delusional no longer needed to be in straitjackets to keep from hurting themselves or others.
Federal funding had shifted to encourage such deinstitutionalization with grants aimed at developing community-based clinics.
The transformation was especially urgent in Milwaukee County, where a landmark decision handed down by a federal appeals court in 1972 effectively nullified hundreds of mental commitment orders. People who had lived in the asylums for decades were free to go, but where?
Spiro’s colleagues in Madison had pioneered a system called Assertive Community Treatment that would be copied around the world. He, too, pushed the idea that a good mental health system provides care in the community.
He knew that many patients are too frightened or depressed or disorganized to set up appointments and find their way to a doctor’s office. They could not be expected to seek care and maintain treatment on their own.
Doctors and case managers and occupational therapists would need to go out to the patients’ homes and neighborhoods. This was a new and radical idea that would turn the system on its head. It would take funding and tremendous coordination to work. That happened in Dane County.
Not in Milwaukee County.
In most states, funding and other decisions about mental health care are made by a state health authority. In Wisconsin, officials created 72 such authorities, a board for each county. In most counties, those boards would be made up of doctors and lawyers and community leaders.
In Milwaukee County, though, the responsibility for mental health care went to an existing body: The 25-member board of supervisors.
Herzl Spiro, 78, tried to introduce community-based mental health care to Milwaukee in the 1970s and says he feels terrible about how the system has failed.Gary Porter, Milwaukee Journal Sentinel
“I hit one brick wall after another,” Spiro said.
To Spiro, decisions weren’t made with the patients in mind, but with an eye toward currying favor with unions and winning the votes of their members. He recalls one especially intense battle with a supervisor, Harout Sanasarian, who asked for a ride-along with the mobile crisis team, not to learn how it worked, but to get his picture in the newspaper.
“As long as politicians are running a hospital, it’s always going to be a disaster,” Spiro said. “Government can collect money, but they cannot run a health facility.”
By 1982, he quit and moved to Jerusalem, accepting a friend’s offer to help develop mental health care there.
By that time, the new hospital had been built, but it was financially doomed long before the doors opened. Under a federal policy in effect since 1965, hospitals with more than 16 beds where more than half the patients had a diagnosis of severe mental illness could not receive Medicaid reimbursements for their care.
States challenged the policy, but lost at the U.S. Supreme Court and by the mid-1980s it became federal law. Ultimately, rules would be changed to allow reimbursements for those under 22 and older than 64.
By maintaining the outdatedfacility, the county each year loses out on $3 million in Medicaid funding.
Jon Gudeman moved to Milwaukee in 1987, hoping to reorganize Spiro’s system to one based on levels of care. He had heard about the overhaul effort in Milwaukee when he was working at the National Institute of Mental Health and wanted to be a part of it.
Community-based programs were beginning to thrive in places like Columbus, Ohio, and Austin, Texas. But there were still 1,200 patients at the new Milwaukee County Mental Health Complex, many of whom could be living on their own with proper support.
Under Gudeman’s plan, there would be secure wards for those who were dangerous, as well as intensive care, general care, a walk-in clinic, psychiatric emergency room, an observation unit, one for geriatrics and another for children and adolescents.
But Gudeman, like Spiro, grew increasingly frustrated and disillusioned by the lumbering pace of reform and decisions based more on political expediency than quality of care.
Some people were being parked in long-term care units at the complex because there was no other place for them to go. Others were being discharged with no housing or follow-up services.
Many wound up in rat-infested rooming houses or homeless shelters. Some slept in Dumpsters or in public parks.
“People need help when they move out of the hospital and into the community,” Gudeman said. “No one was looking at the patients who were being released from the hospital to see what kind of services they needed.”
In 1989, inpatient care actually rose 8.5%.
By June 1991, conditions in Milwaukee County were so wretched that a consortium of patients’ rights groups sued the county to force administrators to establish a better system of community-based care.
They named Gudeman, the medical director, as the defendant.
“It’s not that I disagreed with them,” Gudeman said recently. “I didn’t. I just couldn’t do much about it.”
A settlement agreement, signed in 1993, listed 12 conditions that the county must meet. These included expanding housing options and community treatment programs to keep people out of the hospital and living safely on their own.
Most of the conditions were never met.
“It didn’t solve the problem the way we hoped it might,” said Rock Pledl, an attorney who worked for the Legal Aid Society at the time. “Not even close.”
The county hired a national consulting firm to develop a master plan to put the court-ordered changes in place. The 168-page document, released in late 1993, laid out a program in great detail and urged three essential elements — move people from the hospital to the community, give them services in the neighborhoods where they live and create a single point of authority.
In other words, it recommended what Madison implemented in the 1970s — a model already being introduced around the world.
Do this right, the report said, and patients will live better while taxpayers spend less.
But the final page in the plan carried this warning: “To implement only one or two of these elements would drastically undermine the integrity of the plan.”
Of course, that’s exactly what Milwaukee County did.
Not every aspect of mental health care in the county has been mismanaged.
By 1995, there was a revolution in care that would prove so successful that Harvard University would use the model to teach classic innovation and solid decision making.
Bruce Kamradt began Wraparound Milwaukee with a $15 million federal grant. The aim was to reduce the number of children who were placed in institutions and to surround them and their families with help in their homes.
It has shown eye-popping results.
Since the program began, the total number of days Milwaukee County children spent in a psychiatric hospital fell from 5,000 a year to fewer than 500. The number of children who stayed in residential treatment centers dropped from an average of 375 to 80. Residential treatment costs $9,500 a month, compared to $3,400 for those in the program.
Each child is assigned to a care coordinator who manages the team of service providers: therapists, life skills coaches, crisis stabilizers, job coaches. Parents and siblings get help, too. The program offers 80 different kinds of services from 200 agencies.
“We surround them with the care they need,” Kamradt said.
All decisions are made as a group with the parents and the children included. Their records are kept on an internet-based software system so that all providers have access to the child’s plan of care.
The funding is exclusively from state and federal grants. Not one penny comes from the county property tax. As a result, the County Board has much less say over its budget.
In 2004, Wraparound Milwaukee was named an exemplary program in children’s mental health by a presidential commission. Five years later, the program was honored by Harvard University and featured in a PBS documentary.
“Here is the amazing thing,” actor Sam Waterston says at the end of the documentary. “Today more children with mental health needs and their families are receiving more services than ever before without any increase in the budget. Children are getting better.”
Paul Schmidt grew up before Wraparound Milwaukee started.
He graduated from the University of Wisconsin-Eau Claire in 1994 with a degree in business and moved to Austin hoping to find a job in computers.
Paul Schmidt graduates from Wauwatosa East in 1988.Gary Porter, Milwaukee Journal Sentinel
He came home a year later, a physical and mental wreck.
Paul had no energy, no friends, no drive to do much of anything.
“He’s a zombie,” his father wrote to Paul’s doctor.
Verna Schmidt, an art therapist who worked with children who had been sexually abused, suspected her son was suffering from post-traumatic stress. He had been robbed at gunpoint a few years earlier when he worked as a night clerk at a Madison motel. The robbers were caught, and Paul had to testify at their trial.
On a typical day, Paul would sleep until 9, then lie around watching TV. His only exercise came from taking a walk with his dad some nights after supper.
“We’d catch him staring into space with an absolutely blank expression on his face,” Verna Schmidt said.
They took Paul to neurologists in Milwaukee and Chicago and to the Mayo Clinic. Doctors tested his blood and scanned his brain. He complained of a stiff neck, so they thought for a while it might be Lyme disease. His arms sometimes shook uncontrollably, so they considered Parkinson’s.
“He rarely initiates conversation,” one doctor wrote. “Patient is severely withdrawn and uncommunicative, almost mute.”
Paul had gained weight and smoked almost nonstop, holding his cigarettes until they burned his fingers and clothes.
Most diagnosed him with schizophrenia, a severe form of mental illness, but the Schmidts had a hard time accepting their conclusion. Verna searched in medical journals for another answer.
“I am resigned to the fact that he might never improve,” she wrote to one doctor. “But I’d feel really devastated if I found out there could have been help.”
In January 1999, Paul got drunk, punched his fist through a window and tried to kill himself by swallowing pills. He was in and out of the Mental Health Complex for the next two years.
He was assigned to a case manager who found a spot for him at East Samaria, a rooming house on N. 17th St. where former patients shuffled through the hallways screaming as others lay on urine-soaked mattresses. It may as well have been an asylum.
Verna visited several times a week, bringing games and trinkets from thrift stores for Paul and the others who lived there.
“Most of the people there didn’t have any family,” she said. “They were so happy just to sit and talk.”
In December 2000, during a stay at the Mental Health Complex, Paul hit a nurse who took away his cigarettes and was charged with battery.
Paul pleaded guilty and was sent to Mendota Mental Health Institute in Madison, a state-run facility with units for people accused of crimes.
Verna knew that the key to successful treatment was to work with the whole family. She wrote letter after letter to her son’s doctors asking for their advice. Few answered.
She called their offices, but most didn’t return her messages.
“They called me a meddler,” she said.
After that, Verna resigned herself that there was nothing more she could do to help Paul get better.
“So,” she said, “we just relied on the system .”
In Milwaukee County, the Behavioral Health Division has 837 full-time employees. In Dane County, which includes Madison, there are two.
The difference: Milwaukee County’s system is tethered to the mistakes of the past, with officials unable or unwilling to adopt new approaches.
In Dane County, most mental health services are provided through contracts with 15 private agencies and hospitals, with the county employees focusing on oversight. If one agency provides poor service, they can turn to another.
In Milwaukee County, the spokes of Spiro’s system are gone, leaving just the hospital in the center —and leaving those who provide the care in charge of their own oversight. In 2002, hoping to avoid the costs of bringing the building and care up to standards, hospital administrators simply dropped national accreditation.
Their effort at short-term savings has cost plenty in the long run, after federal sanctions tied to the sexual assaults, the deaths and other problems. County taxpayers have had to pay more than $4.5 million in the past two years alone to correct errors in care.
How to improve the system
Here are four things experts say can be done to improve
mental health care in Milwaukee County by shifting the focus
from the psychiatric hospital to care in the community.
Follow past recommendations from consultants on
how to provide more support in the community for
those with mental illness.
Complete the upgrades needed to again become
accredited by the Joint Commission, which
oversees standards of care at public and private
Take full advantage, as most other systems do,
of federal money available for community-based
Examine other systems, such as in Iowa, that put
responsibility for mental health care at the
regional or state level.
“Thanks to our mega hospital, the system is so broken that even with good people working there you need to blow it up,” said Lynne DeBruin, who spent 20 years on the County Board. “We keep redrawing the map.
“The bottom line is it’s a broken system the way it is.”
The Iowa legislature voted two years ago to reorganize its mental health care from a county to a regional system. The move, which went into effect in July, shifts funding responsibilities from the 99 counties to the state. The purpose is to allow more continuity and accountability.
“We didn’t let up,” said Teresa Bomhoff, president of the Des Moines chapter of the National Alliance on Mental Illness, one of the advocacy groups that pushed for the changes. “There is too much at stake when you are talking about the lives of our families.”
Could the Iowa approach work in Wisconsin?
Late last month, a state panel looking at how to improve mental health care here refused to endorse a proposal to simply examine what Iowa did.
Often, action only comes in the wake of scandal.
The Journal Sentinel has investigated flaws and abuses of
Milwaukee County’s mental health system for more than a
In 2006, a Journal Sentinel investigation exposed patients living in squalor: Places with broken toilets and bloody razor blades on the floor, places where they served moldy hard-boiled eggs. One landlady admitted taking food out of Dumpsters to serve her residents. Another used her tenant’s food stamp card after he died of injuries from a fall from her back porch.
One man had been dead for three days before his decomposing body was found in his rooming house bed.
In response to the Journal Sentinel’s reporting, then-County Executive Scott Walker and Milwaukee Mayor Tom Barrett formed a task force to address the housing crisis. Eventually, more than 450 housing units were developed by tapping into federal dollars.
Two years later, more than a dozen medical, government and advocacy organizations commissioned a report they hoped would show once and for all how to transform Milwaukee’s mental health system.
“There was a lot of excitement,” said Rob Henken, the executive director of the Public Policy Forum who had once overseen the county’s mental health system.
The report, 184-pages long, was done by Human Services Research Institute, a consulting firm from Cambridge, Mass. When completed in 2010, the central recommendation could have come straight from the past:
Transition patients away from the county’s mental hospital and provide services for them in the community.
The County Board never adopted the report.
Weeks before it was issued, the Journal Sentinel revealed a female patient had been sexually assaulted by another patient on one of the acute wards at the Mental Health Complex and her guardians had not been told about the pregnancy for weeks.
The complex’s administrator John Chianelli was fired, Walker soon was elected governor and then-County Board Chairman Lee Holloway, who became interim executive, wanted to issue his own study.
He did, but that wasn’t acted on either.
The Schmidts were asleep in their motel room north of Escanaba when the phone rang around midnight.
It was an officer from the Milwaukee police. He started to say something, but the connection was bad and the phone went dead.
He called back.
It cut out again.
Was it something about Paul?
The Schmidts had sent Tom Shaffer, Paul’s caseworker, an email the day before asking him to be sure to check on their son. They really didn’t need to.
County administrators had just put a new policy in place: All caseworkers had to personally contact their clients on days when heat advisories were in effect. This was especially urgent for people whose illnesses made them paranoid and more inclined to hide in their rooms, regardless of choking heat.
The dangers of psychotropic drugs in the heat has been known since 1995, when 100 people died in five days in Milwaukee. Autopsies revealed that nearly half of those who died directly of the heat were on anti-psychotic medication.
Jeffrey Jentzen, who was Milwaukee County’s medical examiner, remembers showing up at work that Monday morning to find 90 bodies awaiting autopsies. Examiners ran out of space in the morgue, so they stored the extra bodies in refrigerated trucks.
Jentzen, now a professor at the University of Michigan, recalls driving home a few nights later, exhausted. It was still sultry, maybe 90 and muggy. As he headed up Highland Ave. toward I-43, he saw a man, obviously mentally ill, trudging up the hill.
“He was wearing a wool coat, knit hat and gloves like it was the middle of January,” Jentzen said. “It was the eeriest thing.”
Jentzen would co-author medical journal articles and give presentations across the country on the link between the drugs and heat deaths. Still, it took Milwaukee County mental health administrators 17 years to come up with a policy requiring check-ins during heat advisories.
The Schmidts were frantic by the time the call finally connected.
Paul was dead.
His caseworker had shown up at about 7:30 that morning, when the temperature was 80 degrees, to check on Paul. So did a nurse from the agency.
Ten hours later, when Paul had gotten up from bed to go into the living room, he collapsed. His roommate tried to get him up, but couldn’t lift him, so he called 911.
According to the medical examiner’s report, the paramedic noted Paul felt “hot to the touch.” The air-conditioner had not been turned on. The room temperature was recorded at 93 degrees.
Paul’s core temperature registered 108.
Paramedics tried to restart his heart and put cold towels under his arms. They worked on him for more than 20 minutes.
He was pronounced dead at 6:34 p.m., and his body was taken to the medical examiner’s office.
So many questions raced through Verna Schmidt’s mind on their drive home: How could this have happened when the air-conditioner they bought him was no more than 30 feet away in the living room? What about the fan they dropped off on their way out of town? And the case of bottled water?
Had Paul opened his door to let the fresh air in, as she told him time and time again to do?
She never found out. All the case manager would tell her was, “You know how Paul liked his privacy.”
From fewer emergency detentions to better community care, other cities show the way.
In the months after their son’s death, the Schmidts tried to stay busy. They went to Atlanta to visit their daughter and her family. Paul Schmidt went hiking in Colorado with their younger son, Mark.
It was so odd not to have Paul coming by the house every other day.
They would watch TV. Paul loved music videos. He’d been a bit more social in recent years, and even had a girlfriend. They liked to go on walks.
Verna consoled herself by reaching out to others. She wrote a comedy show for a nearby senior citizens club and helped conduct tours at Ten Chimneys, the estate of the late actors Alfred Lunt and Lynn Fontanne in Genesee Depot.
She read to homeless children at a shelter downtown and wrote a little play for them to act out based on “The Lorax,” by Dr. Seuss.
Some words stuck with her more than others:
“Unless someone like you cares a whole awful lot,
Nothing is going to get better. It’s not.”
How this was reported
To report this story, the Journal Sentinel reviewed county
budgets from 1995 to 2013 as well as a range of documents,
including a 1994 federal court settlement and consultant
reports from 1993 and 2010 on how to fix Milwaukee County’s
mental health system.
A reporter conducted dozens of interviews with officials
whose involvement with the Milwaukee County mental health
system spanned nearly four decades. Extensive interviews
were also conducted with the family of Paul Schmidt, who
described what they were thinking at various points. Medical
records covering 18 years of treatment were provided by his
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