Nowhere to turn: Mental health care in crisis

Leslie Carpenter’s story is not just personal — it’s a warning sign of a mental health system in Iowa that is failing those who need it most and the families trying desperately to support them. As a retired physical therapist turned full-time advocate, Carpenter has spent years fighting for better treatment for Iowans with severe mental illnesses like schizophrenia, schizoaffective disorder, and bipolar disorder. This relentless advocacy is fueled by Leslie’s experience in seeking help for her own son, whose diagnosis and subsequent difficulties exposed to her the deep cracks in a system that allow the most vulnerable to fall through.

Leslie and her husband Scott Carpenter created what she calls a “Mom and Pop” advocacy organization (Iowa Mental Health Advocacy) to speak with elected officials on behalf of those affected. “I’m a lobbyist at the state Legislature paid by nobody,” she says. “It allows me to be true to the mission. I’m not beholden to a board, employer, or client. I can very specifically home in on issues that affect people that nobody else is there lobbying for.”

Despite legislative wins — such as loan forgiveness programs for mental health professionals and Medicaid reimbursement rate improvements — the state’s mental health system remains critically under-resourced. Families continuously call Leslie in desperation, seeking acute care beds, long-term housing, and programs like Assisted Outpatient Treatment (AOT), which Iowa implemented just two years ago in Johnson County. Iowa’s closure of two psychiatric hospitals has created a bottleneck that pushes severely ill individuals into emergency rooms, jails, or onto the streets, rather than into care. The results have been devastating.

One of the most significant barriers to treatment is anosognosia — a condition where severe mental illness impairs a person’s ability to recognize they are sick. This means individuals often do not voluntarily seek help, yet Iowa’s laws make it nearly impossible to intervene unless they are deemed an immediate danger to themselves or others. The consequences are dire; Leslie describes it as a cycle of repeated hospitalizations, incarceration, and early deaths.

Meanwhile, an alarming trend is emerging in emergency departments. Due to staff shortages and increased safety concerns, some hospitals are now releasing patients experiencing psychosis if they test positive for substances, rather than holding them for proper evaluation and care. These individuals, often self-medicating due to untreated mental illness, are left without support — pushed back into a cycle of crisis and criminalization.

Leslie describes being contacted by the mother of an adult with schizophrenia who had been stable for years.

“Previously, he was getting services and able to stay out of hospital. His parents paid for his home. He was getting services with assertive community treatment. Unfortunately, the pandemic led to less human connection, and he began deteriorating. Seeking connection, he attended the free lunch program. There, he met some people who did methamphetamine. Eventually, he also experimented with and became addicted to meth. Once that started, he had another hospitalization but they refused to keep him because they were afraid of aggressive behaviors. He kept going off his medications and started spiraling downward. This is what can happen when people step away instead of stepping in to surround a person with the type of treatment that they need.”

The numbers paint a stark picture. In Iowa, a person experiencing a mental health emergency is 39 times more likely to end up in jail than in a hospital. While access centers help those who recognize they need treatment, they fail to reach those who don’t. Without legislative action to expand AOT, increase hospital beds, and improve discharge planning, the state will continue to prioritize punishment over treatment.

New York City’s model under Mayor Eric Adams provides a road map: proactively identifying and treating individuals in psychiatric crisis, providing extended hospital stays, and ensuring stable housing and community treatment post-discharge. Iowa lawmakers must take note.

Three key bills up for discussion this legislative session have the potential to move the needle. They include expanding Assisted Outpatient Treatment programs statewide, requiring responsible hospital discharge planning, and ensuring early intervention for individuals experiencing psychiatric deterioration. Johnson County’s AOT program has reduced hospitalizations by 73% and saved over $2 million in health care costs, making the case for scaling AOT statewide evident.

Mental illness is not a crime, yet our system continues to treat it as such. Likewise, those experiencing substance use disorder are more likely to improve when the issue is addressed as a public health crisis rather than a crime. It would serve us best to identify the opportunities to more holistically treat both, and support families seeking help.

We have lost the element of humanity when it comes to people experiencing mental health disorders and substance abuse. Rather than being met with compassion and care, they are treated as burdens to be managed or threats to be neutralized. Our existing system has turned to incarceration, emergency discharges, and avoidance instead of investment in real, sustained treatment. This neglect not only fails those in need but also erodes the moral fabric of our communities. We must recognize that mental illness and addiction are not choices — they are medical conditions deserving of the same empathy and urgency as any other health crisis.

At the conclusion of our interview, Leslie expressed her gratitude to the legislators, other professional lobbyists, and HHS officials who have been willing to listen, share their knowledge and work collaboratively to help improve the continuum of care for people with severe mental illnesses.

To review Leslie’s advocacy website, please visit: iamentalhealth.com

Sofia DeMartino is a Gazette editorial fellow. sofia.demartino@thegazette.com