About this project
Young and in Crisis is the Register’s occasional series exploring Iowa’s youth mental health crisis. The series focuses on the experiences of young Iowans and their families who struggle to access mental and behavioral health services, digs into the factors that create barriers to that care and explores solutions from top state officials. Michaela Ramm reported this story while participating in the USC Annenberg Center for Health Journalism’s 2024 Data Fellowship.
Two years ago, Bailey Prieve’s son was beyond his breaking point.
The then-6-year-old Urbandale child, struggling with a half-dozen diagnoses that include post-traumatic stress and mood disorders, had been increasingly aggressive toward his family over the past year.
By fall 2022, Prieve and her husband resorted to locking themselves in bedrooms or their cars to separate themselves from his violent outbursts. One day, after an incident at football practice, Prieve said her son came home upset and stormed into his room.
She went upstairs to check on him a few minutes later and found him with a bungee cord around his neck, trying to hang himself from his loft bed.
“Had I waited five more minutes to come up and check on him, we wouldn’t have him here with us,” Prieve said.
At the time of her son’s attempted suicide, the family had been on waiting lists for therapists and other services for months. Though state agencies had promised to support her after she adopted her son from Iowa’s foster system, Prieve said the family had fallen off of everyone’s radar during the COVID-19 pandemic, leaving her clueless on where she could go to find him help.
It wasn’t until his mental health reached a nearly fatal crisis that doors finally opened to get the treatment he needed, she said.
“It’s terrible it takes something like that to get help,” she said. “The trauma that that caused our family was huge.”
Stories like the Prieve family’s have become sadly familiar among experts and advocates in the state. Many families in Iowa have struggled to find appropriate mental and behavioral health care for their children before circumstances become dire — and, in some tragic cases, help comes too late.
More:Are you worried about your child’s mental health? Experts offer advice on how to get help
Adolescent and teen mental health problems have significantly increased over the past decade, with demand for help higher than ever. The challenges, seen in Iowa and nationwide, come as workforce shortages and an overall lack of services for children and teens statewide have further hindered access.
In fiscal year 2023, state data show, 7,689 youths under age 21 received mental health and substance use disorder services funded through the state regional mental health system, according to records obtained by the Des Moines Register. That is a 40% increase from fiscal year 2018.
“It isn’t an Iowa-specific challenge, this is something we’re seeing nationally,” Kelly Garcia, director of the Iowa Department of Health and Human Services, told the Register. “The need for behavioral health services, especially for young folks in our lives, is far outpacing available service provisions, and that’s true nationwide.”
Some experts in Iowa also have laid partial blame on the state’s historically underfunded and disjointed behavioral health system for youth. They say the system lacks a clear pathway to services such as therapy, residential treatment and respite care, leaving many families lost on where to turn.
“We have terrific youth mental health service providers in the state, but we don’t have a system for kids, and so it ends up being this patchwork of services that families can’t figure out how to navigate,” said Chaney Yeast, director of government relations and family services at Blank Children’s Hospital in Des Moines.
“What’s available here in Des Moines looks different than in Cedar Rapids, it looks different in Sioux City. It’s not an urban-rural divide, it’s like we don’t have a system.”
Without early intervention, Iowa youth lack clear path to services
Parents and caregivers who spoke to the Register described frustrating and exhausting experiences of navigating a confusing system in sometimes vain attempts to find their children adequate services.
Like an impenetrable maze, families hit dead end after dead end — all while their children’s mental and behavioral issues continued to spiral. Some families who do manage to navigate their way through the maze to treatment only reach their goals after a crisis is upon them.
That was the case for Cascade resident Rachel Callahan. She constantly hit roadblocks over the several years she worked to find services for her son Harry, who first began displaying defiant behaviors at age 4.
Callahan took her son to clinician after clinician, first to seek a diagnosis and later to find the right treatment. By the time Harry was in second grade, doctors had tried nearly a dozen different medications to regulate his emotions.
By the time he was in fourth grade, his prescriptions had grown to 18.
The family changed schools three times and sought out new therapies, all in the effort to find a solution to Harry’s increasingly worrisome outbursts. Throughout it all, Callahan said, she felt no one had a clear answer on how to get her son to the right level of care.
“For years we’re battling, and nobody knows what to do,” Callahan said. “We were passing through all of these doctors, all of these therapists, all these schools, all of these (medications), everything. Just bouncing off everything.”
By the time Harry was 9, Callahan and the school staff regularly began calling police, fearing he would seriously hurt himself or others. He would punch out screens, hit staff and his family, and try to run away from the school.
Yet Harry was denied placement at every inpatient treatment facility across the state, she said. Callahan drove him at least half a dozen times to the emergency room for his violent outbursts, but each time he was sent home without further follow-up, she said.
Finally, having exhausted all resources, Callahan signed paperwork with the help of school staff to have a court commit Harry to a residential youth treatment facility.
At age 11, Harry was admitted a Cedar Rapids-based psychiatric medical institute for children, or PMIC, for 90 days.
Now 13, Harry is doing well, thanks to his time at that facility. But it’s not a fond memory for him.
“It was the reason that helped me get to where I am,” he told the Register. “It’s just a lot of stuff I didn’t like. It brings back a lot of bad memories, too. It’s been a lot.”
Callahan doesn’t believe it should have reached that point and blames the fact her son didn’t get care early on for his eventual court committal.
“I feel that people who should have known the resources did not know the resources,” she said.
Dr. Stephen Mandler, chief medical officer of the Orchard Place youth mental health services facility in Des Moines, said Iowa families often struggle to find help at the right time because the state lacks early identification and intervention services.
It may be clear at a young age that a child needs additional support. However, because there’s no systematic way for them to be evaluated and moved to an appropriate level of care, the problem isn’t properly addressed.
Mandler said he often interacts with teenage clients whose symptoms were appearing as early as kindergarten.
“Definitely in Iowa, there’s not enough mechanisms to identify and track sensitively how these things brew and become the volcanoes that they are at age 15,” Mandler said.
“We’re pretty certain that if we were to get in early, that the amount of money and public energy invested in trying to change the trajectory for that child would be significantly less.”
Stigma also plays a major factor, said Kerby Hanson, clinical director of the PACE Center at Orchard Place.
Parents may not receive support because there’s a lack of understanding of behavioral health conditions. Or, parents may not realize mental health is contributing to their child’s issues.
“It only exacerbates the problem, because no one thinks a mental health disorder exists until the child is older or maybe even an adult,” Hanson said. “So we just kick this can down the road constantly until the problem is too big, because no one really sees it.”
Youth mental health worsens across Iowa, nationwide
Today, more and more Iowa families are finding themselves stuck in the maze as demand for mental and behavioral health services has spiked in recent years.
Mental health providers say youth mental health has been worsening at least over the past decade, but the coronavirus pandemic escalated the decline.
That’s highlighted in results from the Iowa Youth Risk Behavior Survey, a federal survey that measured tens of thousands of Iowa high school students’ habits and well-being for decades. The state decided not to participate in 2023.
But the 2021 Iowa Youth Risk Behavior Survey found 39% — or 2 out of 5 — Iowa students had experienced persistent feelings of sadness or hopelessness in the past year. Among LGBTQ+ youth, the number reached an alarming 68%.
That’s an increase from the 33% of students in 2019 and a jump from 23% in 2011.
The 2021 survey also found nearly 23% — or more than 33,000 students — reported suicidal thoughts. That’s a notable increase from a decade earlier, when the proportion was 15%.
Iowa reflects a trend happening nationwide. Across the U.S., the 2023 Youth Risk Behavior Survey found 40% of high school students experienced persistent feelings of sadness and hopelessness and nearly 29% reported experiencing poor mental health.
Twenty percent reported seriously considering suicide, and more than 9% actually made an attempt.
Federal health officials also found that among those adolescents with a mental health diagnosis that needed treatment or counseling, 61% reported difficulty getting necessary treatment in 2023, the federal report showed.
And as youths languish without care, their needs become more severe, said Andrew Allen, CEO of YSS.
“The reality is, meeting the needs of the most acute youth is taxing on the system,” Allen said. “The opportunity to provide early intervention and early identification is going to create less strain on the system as a whole.”
As the state struggled to face this growing demand, Disability Rights Iowa filed a class-action lawsuit in early 2023, accusing the state of denying Medicaid-eligible children their legal right to mental health care.
The advocacy rights group alleged in the suit that despite receiving federal funding to provide behavioral health services, Iowa “administers an inadequate, inaccessible and dysfunctional mental health system.”
Disability Rights Iowa declined to comment for this story. The state agreed to a settlement and promised to take steps to address the challenges raised in the lawsuit.
State official promises solutions with behavioral health system overhaul
The issue has been known to state officials for years, with many committees and advisory groups offering solutions. The Children’s Behavioral Health System State Board was one such committee, and it issued a strategic plan that became the basis for Iowa’s Children’s Behavioral System in 2019.
Even so, young Iowans continued to struggle to find adequate support, said Yeast of Blank Children’s Hospital.
“We have the road map, we have some of the destinations built, but we don’t have the roads built yet to get us from A to B appropriately,” Yeast said. “So we have a system that is clogged because kids get stuck in a level of care that’s not the right level of care.”
That problem is at the forefront of the state’s effort to overhaul Iowa’s behavioral health system, according to Garcia. Last year, Gov. Kim Reynolds signed a law instituting a new system that state officials say will eliminate gaps in Iowa’s behavioral health service array.
The new system is set to go online in July.
“It is at the forefront of our behavioral health redesign to really illuminate the front door — a brightly lit front door so that individuals who seek services understand where to go,” Garcia said.
She acknowledged the challenges many Iowa families face in accessing services. She noted Iowa’s system is heavily focused on treatment, lacking in prevention and early intervention.
A goal for the new system is to intervene in a child’s first episode and get them on the right track as soon as possible, she said.
That in turn could help alleviate stress on providers. Not everyone needs to see a psychiatrist, Garcia said, so instead they should be directed toward peer support or other services that can provide enough intervention.
“That’s where it gets clogged,” she said. “You have a really high level of need across a wide number of people, and so the system needs to shift and expand. We need to get people into the right sets of services for their particular need.”
Without it, Iowa youth will continue to struggle to access care.
“I don’t think it will solve all problems, but absent this, I don’t think we could make a dent in this,” Garcia said. “So it’s imperative we make this change.”
‘You see what people struggle through’
Prieve’s son, now 9, is now getting the support he needs. A day after his suicide attempt, he was checked into crisis stabilization care at Easterseals Iowa.
A month later, he had an appointment with trauma specialists. A month after that, he started therapy twice a week.
It was a huge relief to finally have the support he needed, Prieve said. Still, before that happened, the holes in the state’s system left them both in a desperate situation that nearly ended in tragedy.
“I never want my son to think that he’s the problem, because he’s not,” she said. “The system is to blame for the lack of support, and the lack of services. I don’t blame anybody for what he’s going through, but I do think the society and the system can have some blame for the mistreatment.”
The state says the goal is to intervene for families like Prieve’s and Callahan’s before it reaches that crisis point. However, details of the state’s new redesigned behavioral health system — in particular, how a children-focused system will take shape — are still unknown.
Many mental health providers and stakeholders are optimistic, but many agree additional funding is crucial to make it successful.
“This is really a cry for continued investment,” Allen said.
Callahan, who now works as a peer support advocate for NAMI Dubuque, echoed those comments. The experience with her son dramatically changed her view, and she said she believes more attention needs to be brought to this issue to ensure everyone has access to necessary mental health care.
“You see what people struggle through,” she said. “Once you see mental health at its worst … you look at things differently, and you see they didn’t get help. The system failed us. They failed them.”
Michaela Ramm covers health care for the Des Moines Register. She can be reached at [email protected] or at (319) 339-7354.
How to get help
If you or a loved one need mental health support, help is available through the 988 Suicide and Crisis Lifeline. Dial or text 988 or visit 988lifeline.org for free and confidential crisis support.
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