Milwaukee Journal Sentinel: Mental health care advocate born of adversity
March 17, 2012
By Meg Kissinger of the Milwaukee Journal Sentinel
When Mary Neubauer sits down with her colleagues to talk about how to redesign Milwaukee County's mental health systems, she brings something to the conversation just as valuable as her master's degree in social work.
She can talk about how terrifying it was to be held down by leather restraints.
She remembers being treated like a problem, not a person.
She knows how it felt to be in so much pain that suicide seemed like the only reasonable way out.
"I've been there," she said softly on a recent day.
Neubauer, 53, looks like the sturdy softball player she was until her knees gave out. But she is no steamroller.
She makes her point with the kind of humility and self-deprecating humor that make people want to lean in and listen.
Her voice is an important one that, until recently, was not heard much by policy makers.
When Milwaukee County bureaucrats first talked about how to fix problems in the system more than 20 years ago, they interviewed people with mental illness about how they thought the care should be. But the patients weren't nearly as prominent in decision-making as Neubauer is today.
She serves as co-chair of the Milwaukee Mental Health Task Force and is the consumer representative of the Wisconsin Council on Mental Health. She is a member of that group's legislative and policy committee.
This is no window dressing. At many mental health forums and meetings, Neubauer is the one running the show.
Here she is at Serb Hall on a Tuesday morning giving a report to more than 200 people on ways to provide better services to people who are being discharged from the county's Mental Health Complex. There she is the next day performing before more than 300 people at the University of Wisconsin-Milwaukee in a show called "Pieces." The play features an essay she wrote in 1986 during one of her darkest periods.
Neubauer is a certified peer specialist who works 12 hours a week helping others with mental illness find health care benefits. She trains police officers and sheriff's deputies on how to more effectively and safely deal with people in crisis.
Even after knee surgery earlier this year - a replacement of a replacement - Neubauer is busier than most. Many is the day that she leaves the house before 8 a.m., returns at 10 p.m. only to fall asleep in her chair as she reviews emails.
These are pivotal times in Milwaukee's public mental health system.
Milwaukee County has, by some measures, the least efficient public mental health system in the country. In 2010, police brought people to the county's psychiatric emergency room 8,274 times, a 33% increase in the past decade. With a lack of affordable housing and community mental health centers at their disposal, county mental health administrators often have no better place to send people with chronic and severe mental illness than to the complex. Care there costs a staggering $1,400 a day.
Problems with Milwaukee County's mental health systems aren't new.
The hospital is old, outdated and inefficient. A high-profile starvation-related death in 2006 and a string of sexual assaults in the acute wards two years ago prompted state and federal regulators to declare that patients at the hospital were in "immediate jeopardy." Hospital administrators were ordered to fix the problems or lose federal aid.
Housing for people with severe and persistent mental illness, though improved in recent years, is still inadequate. Policy experts estimate the area needs another 1,200 units to meet the demand.
That Milwaukee hasn't been able to solve so many of these persistent problems is a source of real frustration for patients and caregivers alike.
"We've been here before," said Geri Lyday, administrator of the county's Disability Services, when she heard plans for the redesign of the county's private and public mental health care.
A consultant report, released in October 2010, repeated many of the themes that had been raised in a report from 1992. The new report urged that consumers, like Neubauer, be central to the effort of overhauling the system.
Neubauer, a south side native and Pulaski High School graduate, seems tailor-made for the task. She's plucky, organized and passionate without being shrill or overbearing.
Her cousin, Lois O'Brien, remembers Neubauer as a "cute little girl full of moxie."
But Neubauer says real friends were hard to come by.
"I got into trouble a lot," she said.
Her first suicide attempt came at the age of 11.
By eighth grade, she was being pulled out for group counseling.
"The other kids called it 'the crazy class,' " Neubauer recalled.
It was held in the boiler room of the school.
Neubauer sees that as kind of a metaphor for the way psychiatric issues were dealt with then - behind closed doors, in dark corners.
After high school graduation, she got a job as a wellness coordinator at Delco Electronics avionics division.
But all was not well with her.
In 1984, she was diagnosed with bipolar disorder, a psychiatric condition marked by wide mood swings. Her brother was killed in an automobile accident in 1988.
In her manic times, she drank too much, an ineffective effort to calm her down.
"I was loud and obnoxious," she said.
Agreed, said a friend of hers from those days who asked not to be named because of concerns about her ex-husband. She and Neubauer were in the same ward at Aurora Psychiatric Hospital, a private facility in Wauwatosa.
"I hated Mary's guts at first," the woman said. "Mary was a real bad-ass with a mean, ugly dark energy."
Neubauer spent recklessly. One Christmas, she bought so many gifts, it took her family eight hours to unwrap them.
Her bipolar disorder and complications from her knee injury caused her to have to quit her job and go on disability.
By 2000, she was forced to sell her house because she could no longer afford the payments and her hefty medical bills.
She veered in and out of mental illness. During one particularly bad reaction to her medication, Neubauer drank out of the dog's dish.
"I don't even remember it," she said.
Neubauer stopped coun ting her hospitalizations when she got to 25.
A neuropsychologist told her - twice - that she did not have any skills that she could put to use in the workplace.
"That really lit a fire under me," she said.
What might have crushed others served as a spark for Neubauer.
She had always been a hard worker, but now she was on a mission.
She graduated with highest honors from Concordia University with a bachelor's degree in health care administration and a master's degree in social work from the University of Wisconsin-Milwaukee.
One of Neubauer's most valuable learning experiences, she says, was her internship at what is now called Disability Rights Wisconsin, an advocacy organization for people with disabilities. She traveled to Madison three days a week working under the supervision of the managing attorney, Dianne Greenley. Neubauer became certified as a peer specialist to help others navigate the choppy system of benefits.
Still, her illness continued to hound her.
The low point came Memorial Day weekend in 2006 when, after a fight with a family member, Neubauer holed up in a motel and considered killing herself.
"I had enough medication to do it," she said. "It would have been the end."
Instead, she picked up the phone and called the police, asking for an officer trained in crisis intervention.
The dispatcher told her she didn't know what Neubauer was talking about and hung up.
Neubauer called back.
"I knew they had the program," she said. "I helped with the training."
But the dispatcher again said she didn't know what Neubauer was talking about.
"I was going to try just one more time," Neubauer said.
This time, an officer called her back and, ultimately, persuaded Neubauer to get help.
Working to help others
Neubauer ultimately moved into the Cathedral Center, a homeless shelter for women where fights sometimes broke out in the dorm.
"I was too afraid to take my glasses off at night," she said.
During the days, she took the bus to the County Grounds, where she trained to become a certified peer specialist.
She volunteered for one committee after another.
Before long, she and her former roommate - the one who said she hated her guts - were working side by side to persuade mental health administrators to reform the system.
If she could not have a full-time paying job, Neubauer was determined to work as hard as she could at reducing the stigma of mental illness. She would do what she could to teach others that having a mental illness does not make a person any less valuable to society.
"It's not a life sentence," she said. "Recovery is possible."
Sue Schuler, former director of nursing at the county's Mental Health Complex and later administrator of acute and crisis services, is a good friend of Neubauer. Occasionally, the two have bunked together at state conferences.
Schuler said she could see all along that Neubauer had great potential to lead the county's reforms.
"She understands what illnesses she has. She is engaged with her therapy. She is faithful about taking her meds," Schuler said. "Mary works very hard on maintaining her health."
And now she is working to see that others are able to do the same.
"I am so happy to be alive," Neubauer said. "My recovery is not linear. It's more like a spiral staircase. I take a few steps forward and sometimes, one back."
Neubauer lives in a sun-drenched apartment in St. Francis with her tortoise-colored cat Piper. She rides her exercise bike every day, having lost 65 pounds in a few months.
She credits medication and therapy with her recovery. But just as important - if not more so, she says - are her relationships with friends and family.
"I've been so fortunate to have people in my life who gave me hope when I didn't have any hope for myself," she said.
Neubauer says she is as optimistic as she has ever been that conditions are improving for people with mental illness. But there is still a long way to go, she said.
Only 14% of people with severe and persistent mental illness have jobs, Neubauer says.
"We need to do a lot better than that," she said.
She is determined that the ideas for change won't sit on a shelf collecting dust.
"We know what we're doing wrong," she said. "Now it's time to get moving and fix this."