Sunday, June 7, 2015
About the series
World-Herald columnist Erin Grace looks at the struggles of three people with severe mental illness — and the confusing health care system that isn’t always there to help them.
Part I: Despair
Sunday: Kyle had everything going for him. Except a brain he hated.
Part II: Adrift
Monday: Patricia has no permanent place to call home.
Part III: Hope
Tuesday: Nancy shows that recovery is possible.
Patricia had just moved into a South Omaha group home when talk had turned to when she would leave.
The 37-year-old Omaha woman who has been dealing with severe mental illness for most of her life was on her 13th placement in 23 years. But now her parents were being handed a discharge plan. It was a frustrating reminder that they shouldn’t get too comfortable, because this placement would be temporary — 12 to 15 months.
Sometimes the timetable can be stretched, a staffer told David and Genie Shumaker. This offered little solace to a couple who had spent much of 2014 in turmoil over a decision to end Patricia’s placement at a residential treatment facility near downtown. The Shumakers had battled the State of Nebraska, which has a say over where Patricia goes. And they lost.
Now they faced the prospect of gearing up for another move.
Patricia has struggled for most of her life with schizo-affective disorder. Her illness is so severe, her parents say, she can’t live on her own. She has caused so much conflict at home she can’t live there, and doesn’t want to.
But Omaha’s mental health system has no permanent spot for her, either. This is a source of profound angst for Patricia’s parents, who want to see their daughter settled and who are extremely worried about her safety and future. And it’s a hole in the system, according to a recent study of Omaha’s mental health services.
The Colorado-based TriWest Group found across-the-board shortages in all services. While the consultants don’t advocate a return to institutional care that Nebraska once had for people like Patricia, they said Omaha needs more housing options. The consultants singled out something called permanent supportive housing as an ideal. Omaha already has some 1,200 of these apartment-style setups that come with some social services such as case management in order to promote independent living. They are available to people with a range of physical and mental issues.
But the Shumakers are not convinced that their daughter could handle living in an apartment alone, even with some help. And even if she could, most existing spots in Omaha are for homeless people.
Other options are sparse. The state has a limited number of hospital-level psychiatric beds at the Lincoln Regional Center. And there are several assisted-living facilities that take mentally ill people — but without specific mental health services. There’s no guarantee that the government, which pays for Patricia’s care, would even sign off on a placement to one of them. There are few in-between places — such as the kind of supervised group home she’s in now — that don’t have time limits.
So the Shumakers, who are Patricia’s legal guardians, feel stuck in a limbo of uncertainty where decisions about Patricia’s care are largely out of their control and hers.
Their worry comes from experience — two dozen years of watching their daughter struggle with self-destructive, impulsive and sometimes delusional behavior with no real improvement.
» Community Alliance, a nonprofit center that specializes in adult mental health: 4001 Leavenworth St.; 402-341-5128
» Kim Foundation, which serves as an information clearinghouse: 13609 California St.; 402-891-6997
» Region 6 Behavioral Healthcare: 3801 Harney St.; 402 444-6573
» CHI Health 24-hour crisis line/information and referral: 402-717-HOPE (4673)
» Nebraska Family Helpline: 888-866-8660
» National Suicide Prevention Lifeline, 800-273-TALK (8255)
Their uncertainty comes from a mental health system that has moved away from institutionalization and toward providing more cost-effective care closer to home — helping people live as independently as possible in the least-restrictive environment.
The Shumakers see their daughter as a vulnerable woman who is, in some ways, getting worse. Genie Shumaker describes her daughter’s condition as “progressive, profound and permanent.”
Even though Patricia has a Board of Mental Health commitment that mandates mental health treatment, she maintains the legal right to refuse medical and dental treatment — which she continues to do. Patricia has put on 125 pounds and has a history of urinary tract infections and abscesses in her teeth. She has high blood pressure, high cholesterol, diabetes, asthma and hypothyroidism.
Patricia also has the right to refuse participation in activities that might strengthen her ability to live on her own.
Patricia did not want to be interviewed and is being identified here by her middle name. Her parents are sharing her story in an effort to show their frustrations about the tumult in her care.
When you look at old family pictures, it’s hard to imagine that the tanned, radiant, blond teenager with a mile-wide smile was suffering so much inside. But by freshman year of high school, Patricia was skipping class, drinking, sneaking out of her folks’ Dundee home and cutting herself.
Patricia was first hospitalized at 14. She was hospitalized again at 17, and then sent to live in a group home. She bounced from school to school, eventually graduating from Omaha’s old Flanagan High.
There were brief periods of stability. Patricia held down a job at a nonprofit that helped people with developmental disabilities. She drove a car. Her physical health was decent. But she suffered big swings: Sometimes she could work 80-hour weeks. But there were other times when she couldn’t get out of bed for 10 days straight.
By her 20s, Patricia was in and out of residential treatment centers, and her parents finally had a diagnosis: schizoaffective disorder, a mental illness that includes symptoms of both schizophrenia and a mood disorder like bipolar disorder, but does not strictly meet the definitions of either. She had delusions. She acted out impulsively and sometimes violently.
Once authorities found her in a cornfield near Hastings, unable to communicate. Another time police found her wandering on Interstate 80 wearing just overalls. In another frightening incident, Patricia ran from an Omaha group home, and her parents couldn’t find her for two weeks.
She finally called them one day in tears from a Los Angeles homeless shelter. Shelter workers had found her along Hollywood’s Walk of Fame and were ready to commit her under the false name she’d given them.
When Genie brought her daughter back, Patricia, then 26, returned to the Omaha group home. Then the home called the Shumakers to come get Patricia — it couldn’t handle her. Her parents took her to a now-closed mental health facility, the Spring Center, then to Immanuel Medical Center. Patricia finally wound up at one of the state’s three mental institutions, the Norfolk Regional Center.
One reason Patricia bounced so much was Patricia. She ran from an Omaha group home. She once gave the slip to a regional center driver, asking to use the bathroom and then hopping an Omaha city bus to the zoo, where police later found her wandering near the Desert Dome.
Another time, her parents learned she had been living in an Omaha crack house. In addition to her mental problems, Patricia has experimented with drugs — something her father attributes to a wish to feel better.
Patricia’s needs, her erratic behavior and arrangements for her care put enormous strain on her family. Her father, David, fell into depression; and that, combined with arthritis, caused him to leave his job as an auto body technician. David, an alcoholic who had been sober for 12 years, started drinking again.
“It was a rough time,” said David, now 62. “I pretty much had a nervous breakdown.”
David eventually stopped drinking and has been sober for six years. He and Genie, a medical receptionist, have sought marriage and individual counseling. They try to shield their two younger sons. They also have tried to educate themselves. They took a 12-week class on dealing with mental illness and becoming a loved one’s advocate.
Lessons from Patricia’s story
The World-Herald asked psychologists who studied Omaha’s mental health system to respond to the story of Patricia’s frequent moves and discuss how that relates to their findings.
The need for more long-term housing options
Many people with mental illness need a place to live that also provides structure and services and has no time limit.
“Housing instability is a problem. Moving is a stressor,” said James Zahniser, a psychologist and consultant with Boulder, Colorado-based TriWest Group, which studied Omaha’s mental health system last year.
Andrew Keller, a psychologist and TriWest consultant, said the lack of housing for people with serious mental illness is “a big gap everywhere.”
More “assertive community treatment”
This is an intensive, team-based approach to treating mental health that involves more than the standard response of hospitalization, medication and therapy. Instead, it is a more holistic response that wraps a variety of services around a person with mental illness.
It involves medical specialists, behavioral specialists, a peer, a case manager and other helpers, depending on need.
“It’s comprehensive,” Zahniser said. “It recognizes a serious mental illness touches you in every area of your life.”
Region 6, a five-county system that includes Omaha, has an assertive community therapy program. So do two other regions in the state. Zahniser and Keller said that’s a start, but more help is needed.
The cost is about $14,000 annually per client. Though Medicaid will pay for it, private insurers generally don’t. Zahniser and Keller said this approach offers savings down the road because it helps people with mental illness achieve more lasting stability.
The need for treatment that includes a coexisting substance-abuse disorder
Substance abuse is a problem for half of the people who have severe mental illness, Zahniser and Keller said.
— Erin Grace
Still, they have struggled to find a long-term option for their daughter.
She spent five years at the Norfolk Regional Center, until the state switched its focus to serving sex offenders. Patricia was then placed at Telecare, a 16-bed sub-acute facility at 819 Dorcas St. Telecare is run by a California corporation that manages mental health services across the country.
Genie said her daughter seemed happy there and received good care. She and David were grateful, although they worried about Patricia’s decline in physical health.
But last year, Telecare shifted its focus to shorter-term stays of six to eight months, to help shift people to more independence. Patricia’s psychiatrist, who also ran the facility, left to take another job. There was other staff turnover.
And Magellan, which manages federal Medicaid dollars for behavioral health care for the state, told the Shumakers that Patricia could no longer stay at Telecare because she needed to be treated in what it considered to be the most effective setting. The Shumakers asked Magellan to reconsider. They sat through agonizing meetings and argued, in vain, for Patricia to stay where she was.
Dr. Jane Theobald, Patricia’s former psychiatrist, said some people with mental illness never get well enough to live independently, yet the underfunded system often pushes them into less costly options. Frequent moves and changes in medication also can make diseases worse for some patients, she said.
Magellan’s website says its role is to manage funds allocated by the Nebraska Legislature “most effectively and efficiently,” and that placement decisions are made based on medical necessity and what’s available. There is an appeal process if families don’t like the decision.
Magellan presented some options. One was for Patricia to live in a family home, run by an agency specializing in developmental disabilities, not mental illness. The most promising of those homes was in Bellevue, with a couple who said they could take Patricia in the way foster parents would.
A second option was the South Omaha group home run by the nonprofit Community Alliance. But she wouldn’t be locked in there, and she had run away from Community Alliance group homes in the past.
David and Genie leaned toward the Bellevue couple. But Patricia, who gets some say in the decision, said no, choosing the Community Alliance home instead.
It has been almost eight months since Patricia moved to the group home. So far, the results are mixed.
On the positive side, the Shumakers like the Community Alliance staff. The setup seems right. Patricia seems stable. And she has a new psychiatrist, who changed her medication. For the first time in years, Patricia is living in an unlocked facility and not running away as she has done in the past.
But she has refused to go to Community Alliance’s day program, which offers an array of classes and supports to help people with mental illness make the transition into jobs and reinforce their compliance with medication and positive behaviors.
She has been urged to get a job and still hasn’t done that, telling her folks that one restaurant sent her résumé to China and she hadn’t heard back.
Genie and David Shumaker don’t expect their daughter to get much better. What they do expect is that Patricia will move yet again. To a new place, with a whole new set of rules and maybe new medications.
And they fear greatly for Patricia’s health and safety.
“Her delusional state of mind and fears are her reality,” Genie said. “Forcing her into a more independent living arrangement would be very dangerous and would jeopardize her safety.”
Patricia still has delusional periods.
She recently told her mother she was Alice in Wonderland.
Contact the writer: firstname.lastname@example.org, 402-444-1136, twitter.com/ErinGraceOWH