Margalea Warner holds one of two ghost boxes containing a collection of her Keys to Wellbeing that represent the 26 years since she was diagnosed with schizophrenia. Photographed Tuesday at her home in Coralville. (Jim Slosiarek / The Gazette)
Margalea Warner’s Ghost Boxes contain a collection of her Keys to Wellness, representing the 26 years since she was first diagnosed with schizophrenia. “If I had been born 10 years earlier, I could be in a public hospital,” said the retiree from Coralville. Photographed Tuesday at her home in Coralville (Jim Slosiarek / The Gazette)
CEDAR RAPIDS – Margalea Warner’s first psychotic attack came a year after college, when she lived in Washington, DC, and listened to the voices speaking to her.
“I heard voices telling me to jump into the Potomac River. And I did, ”said the Coralville retiree. “I had no idea it was a reckless thing to do. I just obeyed the voices.
Now, if she sees someone acting in a strange but benign way on the street, her first instinct is not to call the police but to call the people best equipped to help her. This oddly-behaved person could have been her, she said, if she hadn’t had a supportive family, effective medications, and robust treatment.
In 1982, she entered a revolving door of hospitalizations for schizophrenia from which she did not leave until 1995. It was not until about thirty years old that she found an effective drug.
The revolving door
For Warner, the revolving door of mental illness included hospitalizations, incorrect initial diagnoses, refusals to take medication, and returns to treatment. For many others, it can also include homelessness, arrests for often non-violent crimes committed under the influence of mental illness, and incarceration.
“A lot of this is because we allow insurance companies to decide how long a person needs medical treatment. “
The question of how to keep people with mental illness out of prisons and the criminal justice system is one of the experts and those with direct experience with mental illness have attempted to address the decriminalization of mental illness, a forum hosted Tuesday night by the Linn County Chapter of the National Alliance on Mental Illness.
“We don’t want our psychiatric patients to be in jail for committing suicide at a rate 16 times higher than the general population. Our psychiatric patients certainly have a lot of needs, ”said Dr. Al Whitters, psychiatrist and medical director of several residential care facilities in the area. “There are still a lot of ways we need to be on top of things to have crisis intervention so they aren’t in jails or jails if they don’t need to be.”
But even when patients do not behave appropriately, treatment cannot always be forced. After last year’s derecho, for example, Whitters said patients who believed they were homeless sometimes entered homes and were charged with trespassing.
“These are stupid things that patients can be blamed for,” he said. “With homelessness, people do things that cause them to break the law, but there is no criminal intent. “
“I would be less concerned about the violence on their part than the violence against them,” Warner said, responding to a question asked about how to respond to someone acting erratically on the street. “This person could be a neighbor, a family member, a co-worker.”
In 1983, she said she was raped on her way home after seeing a movie. Afterward, she hallucinated that the rapist was following her, even after moving to Iowa in 1984.
For the retired secretary, almost 62, her only experience with a law enforcement call went well. Amid his thoughts of suicide, law enforcement responded to his home with tactics of courtesy, empathy and de-escalation by escorting him for help. Warner told The Gazette that if she wasn’t a white woman or had been armed, the situation might have ended differently.
“At some point, we all have to stand up and stop accepting the unacceptable. … We don’t wait until the heart is 99% dead and then process it. We shouldn’t be doing the same with people’s brains.
“Law enforcement has come a long way,” said Cedar Rapids Police Chief Wayne Jerman, a member of the NAMI Linn County Board of Directors. “The key points that the police have understood (are) the education and awareness that the police have undergone over these many years.”
People like Warner have participated in the mental health crisis response training that NAMI helps provide to law enforcement. Jerman said the department has more than 40 officers trained in crisis intervention, access to a mental health unit with trained clinicians and a full-time sworn officer to answer calls from someone facing a episode. A mental health liaison officer who has worked in the ministry for four years receives constant requests from officers.
But even with the progress made so far, experts say there’s a long way to go.
After receiving regular treatment for 12 to 18 months, about 90 percent of people with mental illness make the link between staying on treatment or medication and staying out of hospital, said Leslie Carpenter, an Iowa lawyer. Mental Health Advocacy and mother of a son with schizoaffective disorder.
Catch-22 makes people with certain disorders take their medication long enough to benefit from it. For many, the symptom of anosognosia – lack of awareness – prevents them from realizing that they have a disease.
With physical damage to one of the parietal or frontal lobes of the brain, often seen in patients with Alzheimer’s disease, the disease can prevent people like Carpenter’s or Warner’s son from wanting to take their medications, thus perpetuating the revolving door of mental health care.
For others, insurance interference results in those in care being dismissed too early. Insurance companies are a factor that contributes to much of the criminalization of patients with mental disorders, according to some. When some are denied proper care in a failing mental health system, they commit crimes they may not otherwise have committed.
“A big part of this is because we allow insurance companies to decide how long a person needs medical treatment,” Carpenter said.
For many healthcare providers whose psychiatric units depend on insurance funding for survival, decisions are based more on how quickly patients can be discharged rather than how quickly they can recover. on the right track.
“If we don’t get paid, the units close,” Whitters said. “We are enslaved to the insurance companies, no matter how unfair it is.”
If a patient is incarcerated, the drug that worked on the outside may not be the one that they can access inside.
After Warner jumped into the Potomac, she was sent to her HMO’s doctor — not the family doctor she had known all her life. The doctor prescribed something for her that she saw no reason to take. It took the persuasion of a trusted friend to get help.
There are a multitude of solutions that advocates are looking for. One that would not depend on government funding sources is a change in insurance laws.
“We have to codify, change the laws for real parity,” Carpenter said. “At some point, we all have to stand up and stop accepting the unacceptable. … We don’t wait until the heart is 99% dead and then process it. We shouldn’t be doing the same with people’s brains.
Carpenter is advocating for the formation of what would be the first assisted outpatient treatment program in Iowa, which would work in conjunction with what she hopes will be the first civilian mental health court. In Iowa, there are five mental health criminal courts, but no civil court could intervene until criminal intervention becomes necessary.
In other states benefiting from the programs, hospitalizations have been reduced by 77 percent, arrests by 83 percent, homelessness by 74 percent, and costs to the state by 40 to 50 percent.
For those in the five counties in Iowa that have a criminal court that specializes in mental health, diversion programs organized between prosecutors and defense attorneys may help.
In Linn and Johnson counties, access centers have made mental health care more accessible but have limitations.
“We gathered five good providers in the community and brought them together under one roof,” said Erin Foster, executive director of the Linn County Mental Health Access Center.
They can provide care much faster than the local emergency room, freeing up local law enforcement escorting some patients, and often providing more comprehensive resources in a supportive setting without the need for a referral or referral. an appointment. But in Iowa, state law says no access center can have more than 16 beds – which is not enough, Foster said, especially with a large influx of patients since 2020. Linn County Access Center only provides adult services.
Many solutions boil down to financing.
“It comes down to funding what’s important,” Jerman said. “I’ve been in Iowa for 12 years and it looks like the funding is cut. … It comes down to a very basic human need to take care of each other. “
There is still hope
“If I had been born 10 years earlier, I could be in a public hospital,” Warner said.
But thanks to advances in medicine and care, she is recovering, taking care of herself for 26 years. She hopes others will see mental illness not as the end of the road, but rather as a hindrance.
With the right medications and the right therapy hanging on top of a shadow box she keeps, she rewards 26 Keys – one for each year she’s been out of locked psychiatric wards.
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