116 3rd St SE
Cedar Rapids, Iowa 52401
CEDAR RAPIDS — Margalea Warner’s first psychotic break came a year after college when she was living in Washington, D.C., and listening to the voices speaking to her.
“I heard voices telling me to jump into the Potomac River. And I did,” the Coralville retiree said. “I had no sense of it being a reckless thing to do. I just obeyed the voices.”
Now, if she sees someone acting strangely but benignly on the street, her first instinct is not to call the police but to call people best equipped to help. That strangely acting person could have been her, she said, if she didn’t have a supportive family, effective medication and robust treatment.
In 1982, she entered a revolving door of hospitalizations for schizophrenia that she did not exit until 1995. It wasn’t until she was well into her 30s that she found an effective medication.
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 also can include homelessness, arrests for often non-violent crimes committed under the sway of mental illness and incarceration.
“A large portion of this has been caused because we allow insurance companies to be the deciders of how long someone needs medical treatment.”
The question of how to keep those with mental illnesses out of jails and the criminal justice system is one experts and those with firsthand experience in mental illness attempted to answer at Decriminalizing Mental Illness, a forum hosted Tuesday evening by the Linn County chapter of the National Alliance on Mental Illness.
“We don’t want our psychiatric patients in jail because they kill themselves at a 16-times higher rate than the general population. Our psychiatric patients definitely have a lot of needs,” said Dr. Al Whitters, a psychiatrist and medical director at several area residential care facilities. “There’s still a lot of ways we need to be on top of things to have crisis intervention so that they’re not in jails or prisons if they don’t need to be.”
But even when patients might not be behaving appropriately, treatment cannot always be forced. After last year’s derecho, for instance, Whitters said patients thinking they were homeless would sometimes enter homes and be charged with trespassing.
“It’s silly things that patients can be charged with,” he said. “With homelessness, people do things that cause them to break the law, but there’s not criminal intent.”
“I’d be less concerned about violence from them than violence toward them,” said Warner, responding to a question posed on 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 from seeing a movie. Afterward, she experienced hallucinations that the rapist was following her, even after she moved to Iowa in 1984.
For the retired secretary, almost 62, her only experience with a call from law enforcement went well. In the midst of her suicidal ideations, law enforcement responded to her home with courtesy, empathy and de-escalation tactics by escorting her to receive help. Warner told The Gazette that if she were not a white woman or had been armed, the situation might have ended differently.
“At some point, all of us need to stand up and stop accepting the unacceptable. … We do not wait for the heart to be 99 percent dead and treat it then. We shouldn’t be doing the same thing with people’s brains.”
“Law enforcement has come a long way,” said Cedar Rapids Police Chief Wayne Jerman, a NAMI Linn County board member. “The key points that law enforcement has grasped (are) education and awareness that law enforcement has undergone in these many years.”
People like Warner have been part of the training on mental health crisis intervention that NAMI helps provide to law enforcement. Jerman said the department has over 40 officers with crisis intervention training, access to a mental health unit with trained clinicians and a full-time sworn officer to respond to calls for someone experiencing an episode. A mental health liaison who has been with the department for four years receives constant requests from officers.
But even with the progress so far, experts say there’s a long way to go.
After sticking to consistent treatment for 12 to 18 months, about 90 percent of those with mental illness make the connection between staying on their treatment or medications and staying out of the hospital, said Leslie Carpenter, an advocate with Iowa Mental Health Advocacy and mother of a son with schizoaffective disorder.
The Catch-22 is getting those with certain disorders to take their medication long enough to realize the benefits. For many, the symptom of anosognosia — the lack of awareness — prevents them from perceiving they have an illness.
With physical damage to one of the brain’s parietal or frontal lobes, often observed in Alzheimer’s patients, the condition can keep people like Carpenter’s son or Warner from wanting to take their medication, perpetuating the revolving door of mental illness care.
For others, insurance interference causes those in care to be discharged too soon. Insurance companies are a contributing factor to a large portion of mental health patient criminalization, some said. When some are denied proper care in a broken mental health system, they commit crimes they otherwise might not have committed.
“A large portion of this has been caused because we allow insurance companies to be the deciders of how long someone needs medical treatment,” Carpenter said.
For many health care providers whose psychiatric units depend on the insurance funding for survival, this causes decisions to be based more on how quickly patients can be discharged rather than how quickly they can get back on the right track.
“If we’re not getting paid, units close,” Whitters said. “We’re enslaved to the insurance companies, no matter how unfair that is.”
If a patient is incarcerated, the medication that worked on the outside may not be the one he or she can access on the inside.
After Warner jumped into the Potomac, she was sent to her HMO’s physician — not the family doctor she had known all her life. The physician prescribed something she didn’t see a reason to take. It took the persuasion of a trusted friend to get help.
There are a bevy of solutions advocates seek. One that would not rely on government funding sources is a change to insurance laws.
“We need to codify, change the laws for true parity,” Carpenter said. “At some point, all of us need to stand up and stop accepting the unacceptable. … We do not wait for the heart to be 99 percent dead and treat it then. We shouldn’t be doing the same thing 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’s hoping will be the first civil mental health court. In Iowa, there are five criminal mental health courts, but no civil ones that could step in before criminal intervention becomes necessary.
In other states with the programs, hospitalizations were 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 Iowa counties with a specialty criminal mental health court, diversion programs arranged between prosecutors and defense attorneys can help.
In Linn and Johnson counties, access centers have made mental health care more accessible but have limitations.
“We’ve taken five good providers in the community and put them under one roof,” said Erin Foster, executive director of the Linn County Mental Health Access Center.
They can provide care significantly faster than the local emergency room, freeing up local law enforcement escorting some patients, and often provide more comprehensive resources in a conducive setting without a need for a referral or appointment. But in Iowa, state law specifies that no access center can have more than 16 beds — which is not enough, Foster said, especially with a big influx of patients since 2020. The access center in Linn County provides only adult services.
Many solutions come down to funding.
“It boils down to funding what’s important,” Jerman said. “I’ve been in Iowa 12 years and it just seems like funding is cut. … What it comes down to is a very basic human need to take care of one another.”
There’s still hope
“If I had been born 10 years earlier, I could be in a state hospital,” Warner said.
But because of advances in medicine and care, she’s been in recovery, taking care of herself for 26 years. She hopes that others will see mental illness not as the end of the road, but rather a bump in it.
With the right medication and therapy hanging at the top of a shadowbox she keeps, she prizes 26 keys — one for each year she has been out of locked psych wards.
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