Iowa lacks long-term mental health treatment options. How can the state create a ‘brightly lit path’ for those seeking care?

CEDAR RAPIDS — Last year, Michael Schmitt had just gotten out of the Rock Island County Jail in Illinois and was staying in a hotel. A recovering alcoholic and drug user for more than a decade, Schmitt had been in and out of treatment centers and hospital mental health services.

Schmitt would receive care for a month or two at a time, but lacked the long-term healing he needed. He was looking for a program to help him adjust back into everyday life, was at risk of experiencing homelessness and looking to rebuild his relationship with God — a higher power who could absorb his anxieties.

He turned to Hope Community Development Association (CDA), a nonprofit that runs a yearlong program to help men with substance use challenges or who have served jail time restore their lives. The program teaches them construction skills, and with what they learn, the men restore and build homes in Wellington Heights, the neighborhood where the organization is based.

“I was just so lost in alcohol,” said Schmitt, 36, of Marion. “I got a big heart and I want to share that with others.”

Motivated as he was to recover, the construction work at Hope CDA was a challenge he’d never encountered before. Being on a construction site would sometimes trigger suicidal thoughts.

“That messes with my head and my mental health, and then I get suicidal because that's where my brain takes me and it's scary,” Schmitt said. “ … I'll start comparing myself to others, or I'll start thinking, ‘I can't do this or I'm not capable of doing this. This isn't for me.’”

That’s when he knew he needed help. Most recently, he relapsed in December. He wanted to leave Hope CDA and walked to the liquor store when he felt the urge to drink.

“I've wanted to go back to those old ways,” Schmitt said. “ … Change is hard. And it's scary because I'm not used to success. I'm used to failing — always losing a job or losing a girlfriend or losing family and friends and support — that now I'm starting to gain that back and those successes have been scary.”

With the support of Hope CDA staff like Program Director Larry Anspach, Schmitt chose to go to the Linn County Mental Health Access Center. He’s used it twice now to climb out of his darkest mental spaces. Through Hope CDA, he’s found “brothers” who are healing alongside him and serving the community. He’s cut out old friends and has confidence in himself.

Those programs have given him the resources and social connections needed to survive. It’s taken months of support to rebuild his life — support that not all Iowans can access.

Some Iowans with mental and behavioral health issues grapple with a lack of long-term care options that would help stabilize them or provide the intensive care they need, depending on the severity of their illness.

Regular therapy or group counseling may be enough treatment for some. For others, residential options are key to ensuring they are properly medicated or supported under the watchful eye of health care professionals. In Iowa, those options are in short supply.

Resources like Iowa’s seven access centers have improved outcomes and given people an outlet when they otherwise don't know where to turn with mental health issues, and the centers have helped divert people from jails or hospitals.

But worker shortages, gaps in insurance coverage and flawed billing mechanisms still mean providers struggle to keep up with the need for services, and persist as a barrier for people to access mental health care.

How to seek mental health support

National Suicide Prevention Lifeline: Call or text 988

Your Life Iowa: 24/7 crisis support in the state of Iowa. Call 1-855-581-8111 or text to 1-855-895-8398.

Crisis Text Line: Text 741741 for crisis support

The Trevor Project: Call 1-866-488-7386 for the LGBTQ Crisis and Suicide Hotline

Veterans Crisis Line: Call 1-800-273-8255

Visit the Linn County Mental Health Access Center at 501 13th St. NW, Cedar Rapids. In Johnson County, the GuideLink Center is at 300 Southgate Ave., Iowa City. Both are open 24/7 to adults aged 18 and over. You don’t have to be from those counties to use the facilities.

Looking to address some long-standing barriers plaguing Iowa’s mental health system, the Iowa Legislature last month passed a bill that combines the state’s 32 mental health and substance use districts.

Gov. Kim Reynolds is scheduled to sign the bill — House File 2673 — at Foundation 2 Crisis Services in Cedar Rapids on Wednesday.

“The behavioral health redesign will take Iowa’s 32 fractured mental health and substance abuse regions and combine them into 7 unified districts, to increase access and quality of care by addressing specific local needs and identifying gaps in services,” Reynolds said in a statement to The Gazette. “No matter where Iowans are seeking care, they will have access to the same set of services. The new system will not only focus on creating a coordinated approach to accessing in-patient residential beds for those who need them, but to also access prevention, early intervention, and recovery services.”

The law answers advocates’ calls for streamlined care to better treat mental health and substance use issues that often occur at the same time, but they still have many questions about how the new law will be implemented.

Linn County Mental Health Access Center Director Erin Foster said maintaining service through these changes is a matter of “life and death” for many. If there are gaps and Iowans are shut out from receiving care, “we may never be able to get them back into the system,” she said.

While this change could be a win for how mental health and substance use services are administered in Iowa, advocates say underlying gaps in care persist.

Rural Iowans often face long drives to seek treatment or struggle to access telehealth in sparsely populated areas where internet connections may be weak. Children can’t use Iowa’s access centers, and there’s a limited supply of crisis beds and shelter space.

But Ryan Crane, executive director of the Iowa chapter of National Alliance on Mental Illness, said the state seems to be getting closer to offering a “brightly lit path” for individuals with mental illness. It’s the term officials with the Iowa Department of Health and Human Services use to describe a system in which Iowans know where to go based on the symptoms they experience.

When people experience a physical health issue, Crane said, they know to perhaps go to the emergency room or improve their diet to treat a problem.

“With mental health, it is lifelong,” Crane said. “It is a challenge. It’s overwhelming. It can be scary. A lot of folks don’t know what to do.”

By talking about mental health, better aligning services, investing in early interventions and continuing to break barriers, Crane said Iowa can lift the veil of heavy darkness looming over people with mental illness.

A mental health diagnosis can be disruptive, he said, but Iowans should know: “There is help and there is hope.”

No ‘next step’ in care for many Iowans

From the moment Schmitt walked into Linn County’s access center, he felt the people there genuinely cared. When staff interviewed him to determine next steps, he felt like he could open up immediately, unlike what he’d experienced in more institutional settings.

“They just treat you like you're a human, they don't treat you like you're any different than anybody else,” Schmitt said.

Xaviar Wright, 27, another Hope CDA participant who is a recovering alcoholic from Cedar Rapids, struggled with addiction for years. He started to seek care at age 24 and, like Schmitt had been in and out of monthlong treatment until he turned to Hope CDA.

“My mental health was at an all-time low. I was struggling with alcohol, drinking every day and I just decided that I wanted to be a better parent” for his 6-year-old daughter and 5-year-old son, Wright said. “I thought they deserved growing up with a father who had his life together and who they could possibly look up to one day.”

He first used the access center before coming to Hope CDA. When he wasn’t living in chaos, he felt uncomfortable, and he would catastrophize everything that happened to him — mentally distorting events to feel worse than they were in reality. Most recently, he went to the access center again when he joined Hope CDA in August.

“I wasn't very comfortable with sharing how I actually felt, and being there, they were able to help me learn that it's OK to open up and tell people if I'm not OK, and I don't have to pretend to be OK,” Wright said.

Foster said the access center supports people in crisis or those who need to connect to ongoing support such as counseling. Some might stay for a few days to receive more intensive care.

The center gives patients — who use the center voluntarily — individualized discharge plans that may ask them to arrange an appointment with a counselor or provide them with a safety plan for the next time they’re in crisis.

Foster said recidivism is high in crisis care, and that’s true for Linn County’s access center, meaning people are returning users of the facility. Oftentimes, people come simply because they don’t know how to navigate Iowa’s complex web of mental health care.

Without the access center, Foster said some patients say they wouldn’t know where else to turn. Unlike the Hope CDA participants, she said not everyone has a clear place to seek support beyond the access center.

“It is the next step that is extremely difficult for us,” Foster said. “… There are a lot of times when there isn't a next step. There's not one available. There’s not inpatient beds available. There’s not hab home space available. There is not substantive patient-type supports available.”

Police on ‘front lines’ of mental health response

Typically, people come to the access center as walk-ins, but the facility also diverts people from jails or hospitals.

Law enforcement agencies are often “front line responders” to mental health issues, said Kimberlee Pohlman, Foundation 2 Crisis Services’ law enforcement liaison in Buchanan County. That’s given rise to corresponder programs between the organization and local police forces, said Kelly Zepeda, Foundation 2’s Access Center and Law Enforcement Liaison Program manager.

Foundation 2’s law enforcement liaison program supports nine liaisons in eight law enforcement departments: the sheriff’s offices in Linn, Buchanan, Benton, Delaware and Dubuque counties, and police departments in Cedar Rapids, Marion and Dubuque.

Trained crisis counselors respond to potential or confirmed mental health concerns, supporting officers with resources and connecting people in crisis with appropriate services. Foundation 2 is free, even for those who lack insurance.

Someone dressed as an average citizen may be better able to de-escalate a situation or be more approachable for someone in crisis to speak with than law enforcement officials, Zepeda said. Law enforcement interactions can be one entry point into Iowa’s mental health system, but at its core, the Foundation 2 program recognizes people may truly need housing or other services to address the root of their mental health issue.

Most liaisons carry police radios and put themselves on calls where a mental health or substance use crisis is identified. Two programs use a team model where officers and a liaison respond together on calls. If a call comes in after hours, a liaison may follow up on the call the next day.

In fiscal 2023, the budget year that ended last June, law enforcement liaisons went on 1,795 dispatches and interventions and completed 552 follow-ups. Of those dispatches, Pohlman said 70 percent were stabilized in the home or the community, reducing the need for further intervention or hospital stays and decreasing law enforcement interactions.

Not all hospitals have mental health units, and the closest access centers to Buchanan County are in Linn and Black Hawk counties. There’s funding available to transport people back to Buchanan County but that distance remains a barrier, she said.

It can be even more difficult to find adequate crisis care for children.

A Four Oaks diversion program ended last summer that operated at the Independence Mental Health Institute. Youth could be held there for 47 hours, allowing children and parents an opportunity to de-escalate with the child outside the home after a crisis involving law enforcement. Brownstone Youth Services in Waterloo offers youth crisis beds and Foundation 2 has a youth shelter, but there’s a strict qualification process for that, Pohlman said.

“There are a lot of kiddos who need other behavioral health treatment or specific mental health services locally,” she said. “I can get them established with a provider and med subscriber, but as far as in-home services, referrals for rural communities are two to three months out. You often have parents hanging on by a thread like, ‘Something needs to be done,’ and all I can say is, ‘I put in a referral for this.’”

Acute care options lacking

Long-term acute care options are hard to come by in Iowa, leaving people like Laurie Mahoney-Willger’s son to fall through the cracks of the state’s mental health system.

Mahoney-Willger, 57, of Cedar Rapids, said growing up, her son seemed like a perfectly normal boy who was active in sports. Around ninth grade, things fell apart.

He wanted to go to a private high school, but school officials caught “red flags” on his entrance questionnaire. She said he was diagnosed with schizophrenia after he told health care professionals he was hearing voices.

“It’s like the stages of grief,” Mahoney-Willger said. “You thought your child was normal … and they probably can’t finish high school. They’re not OK.”

Since 2016, her son — now in his 30s — hasn’t lived with Mahoney-Willger as he became more unstable. She said he’s told one of his siblings, “I should kill you,” would talk to himself and had delusions that led him to accuse a former roommate of stealing from him.

Mahoney-Willger said Iowans like him need more residential care options where there’s consistent access to food, medicine and stable housing.

More than 84,000 Iowans are estimated to live with severe mental illness such as schizophrenia, severe bipolar disorder and major depression. Only about 35,000 receive treatment in a given year, according to the Treatment Advocacy Center. Lack of treatment puts them at risk of committing a crime or dying by suicide.

Iowa ranks last in the U.S. for the number of state psychiatric beds with only two per 100,000 residents, the center reports, not accounting for private beds. According to Iowa HHS, community hospitals around the state collectively offer 809 licensed psychiatric beds, but only 646 of those are staffed. That means some beds cannot be used because there are not enough workers to tend to them.

Her son has been committed to residential care facilities six times before. A person must be deemed a danger to themself or others to be committed. A district court judge must sign off, and then county sheriff’s deputies come when there’s a bed available.

Sometimes, her son says that she’s the reason he’s in the mental health system. She said he has anosognosia, a condition where people are unaware that they have a psychiatric condition. It’s “heartbreaking” to experience, she said — to be blamed for trying to get him the care he needs.

“The things you do in his best interest — he’s not going to see it that way,” Mahoney-Willger said.

Still, she brings him groceries and helps with laundry or other needs. After mental illness has taken away so much, she said, his family is all he has.

“They’re not bad people,” Mahoney-Willger said. “They just have a really bad illness.”

Iowa Ideas In-Depth Week Explores Mental Health in Iowa

Iowa Ideas, a project of The Gazette, is hosting a free, virtual In-Depth Week series called Mental Health, May 13-17. It’s an exploration of the state of mental health care in Iowa.

The week features five sessions, held 12-1 p.m. each day. Full session descriptions, including a list of panelists and registration, can be found at iowaideas.com. Here is the week’s schedule:

• Monday: State of Mental Health Care in Iowa

• Tuesday: What’s driving the increase of mental health needs in younger populations?

• Wednesday: Supporting Iowans in Crisis

• Thursday: Changes in Iowa’s Mental Health and Substance Use Districts

• Friday: Working to Reduce Stigma and Avoidance of Care

Comments: (319) 398-8494; marissa.payne@thegazette.com