Maladaptive Geniuses
How Iowa Keeps Failing Our Complex Needs Kids
This month marks the one-year anniversary of my “988” mental healthcare column. In the twelve months since I started it, I’ve focused heavily on adult mental health and healthcare issues, and receive emails every week from readers seeking advice and resources for a struggling loved one. But for every one email I get inquiring about help for adults with mental illnesses and complex needs, I get two from a parent desperately seeking advice for their struggling child. By far, these are the hardest to answer because Iowa still has no cohesive, comprehensive children’s mental healthcare infrastructure in place.
A few weeks ago, I had a long conversation with one such parent who I connected with through Facebook, and she shared with me the agonizing journey she’s been on with her children in this convoluted system.
Nina Richtman is a now-divorced mother of two teenage boys she adopted as preschoolers from the Des Moines-area foster care system. The boys had been removed from their birth parents because of reported neglect. Their birth mother, who Nina says clearly loved them, had intellectual disabilities and lacked the capacity to care for two children.
Nina was well aware of the boys’ familial history, but is educated, well resourced, has helpful connections to employees in DHS, and even worked for NAMI-Iowa at one point. As an adoptive parent, she was as prepared as one could get.
From the beginning, she observed behavioral issues rooted in past trauma. The boys were hypervigilant—meaning they were especially wary, alert, and overly sensitive and reactive to stimuli—had attachment issues, and engaged in negative behaviors to attract attention and test safety, like biting others or themselves to get a reaction. Within weeks of their placement with Nina, both boys were in trouble at daycare from testing their environment and caregivers.
Concerning behaviors in one son also included hoarding, theft, swearing, and cutting—self-soothing behaviors that garnered attention and provided instant gratification, even when he felt bad for and anxious about them later. The boys were on Medicaid and Nina worked closely with a therapist, but the older they got, the more adults wanted to respond to their behaviors with punishment. Society, Nina says, doesn’t understand the roots of trauma. And when it comes to dealing with and processing trauma, humans, and children in particular, are maladaptive geniuses. They will inherently adapt any behaviors—positive or negative—that provide immediate relief to their deeply uncomfortable and painful emotions caused by past trauma.
A “Gray” Process
By age 13, Nina’s oldest son was diagnosed with an intellectual disability, and often coped with school stresses by being disruptive. He had trouble making friends, and daily outbursts of rage. Then, the pandemic hit in 2020, and formal community support for the boys, like school and respite care, drastically decreased. Nina’s family went from receiving some 59 hours a week of support, to less than twelve. As the pandemic closures and restrictions wore on, Nina began to experience suicidal ideations brought on by extreme stress. Recognizing she was in crisis, she went an ER to get help. But because her oldest son is a high needs child who requires a constant line of supervision and major structure, had to come to the ER with her. This triggered DHS involvement.
Nina says that getting adequate care support and help for a high and complex needs child is a very “gray” process. She and her son churned through a nine-month court process where, Nina felt, professionals get a voice on behalf of children, but their own parents who are desperately seeking the help for them do not. Nina even had to work with a “parenting coach,” a professional assigned by the court who had never parented a child with high complex needs themselves, because everyone is treated the same when they go through this process.
Nina’s son wasn’t accepted by PMIC facilities (Psychiatric Medical Institution for Children) or an Intermediate Care Facility because of his intellectual disability. Eventually, he was placed at a residential facility in Council Bluffs that has therapeutic classrooms with a small group of staff who academically meet him where he’s at, and has removed the “comparison of grade level support.” Socially, he now has structure, a community of peers, and leadership roles. The tradeoff for Nina to finally get him adequate help, though, is that she now has to travel some two and half hours to see him.
Repeating the Process
Earlier this year, Nina began applying for intensive therapeutic programs for her younger son after he developed a fascination with fire and started lighting small fires in the home, and she felt she could no longer keep him and herself safe. Orchard Place, a Des Moines-based organization that provides outpatient, inpatient, and community-based mental health services for children wasn’t an option because post-COVID has struggled to maintain adequate staff (something I’ve written about in the past). Emergency intensive hospitalization wasn’t an option because he wasn’t suicidal or homicidal. State hospitals weren’t an option because they are only for patients with “acute” symptoms.
Again, every PMIC in the state denied him admittance because of his intellectual disability, and special needs/intellectual disability programs denied him because his IQ was too high. Nina’s private insurance carrier even tried to help with out-of-state facilities, but all turned him down because service providers can often cherry pick what clients with complex needs they take (and will likely give them a higher success rate). And the state can’t force providers to take anyone, so many programs and facilities can and do deny high complex need children because of intellectual disabilities, safety reasons (like a history of starting fires), and sexual inappropriateness, which Nina’s son had also displayed.
At one point the seriousness of the situation escalated and Nina called the DHS 24-hour emergency number for help or assistance . . . and no one answered.
Finally, after exhausting all other avenues, and as a desperate last resort, the state offered Nina’s son a spot in a residential treatment facility—with adults. As a minor, Nina felt strongly this wasn’t a good option for him. Like her older son, she felt he would benefit more from a program with peers. Kids his own age. The best fit for him would be a Qualified Residential Treatment Program (QRTP), a type of group home run by the state. But, for minors to qualify for a QRTP, they must be in foster care/state custody.
An Impossible Choice
Nina recently made the unimaginably difficult decision to give up custody of her son so that he would qualify. A process where she has to be proven “delinquent” in order to force the state to intervene. Only after six weeks of longer driving him to school or filling his medications did the state finally get involved, declaring her “unwilling” to do things like school drop off and med refills, while not even mentioning the lack of resources she encountered, or the safety issues she was dealing with.
“This isn’t about pride,” Nina says. “I’m willing to do anything to get him help. But the system is really set up to scrutinize and penalize parents, not provide the resources they desperately need. These systems can really harm parents and families. I hate to point this out, but I am well-resourced and white. What if I were a person of color, or was poor, or with a criminal record?”
What Are You Fighting For?
What I’ve learned this past year through writing my “988” column, and what our communities and voters need to understand, is that our children’s behavioral and mental healthcare system is still failing families. What’s missing is some sort of intensive-level support for kids to stay in their homes. Currently, the choices are inpatient, like PMIC (if your child even qualifies), or once a week outpatient, but nothing in between.
Parents like often lose or leave jobs to care for complex needs kids because there are no intensive daily day programs with trained staff to help support them. And, there are no guidelines or checklists for families like Nina’s. They often must turn to each other for tips because the system is always skirting the problem of that missing middle sector.
As I type this, we’re nearing another election, and a white-hot topic has been abortion. The more I learn about the devastating gaps in our system, the more disturbed I become by how people will fight so hard for a life before it’s born, but not after. And especially if kids are born with complex needs and trauma responses.
It seems to me that those kids, those “maladaptive geniuses” as Nina so aptly put it, suddenly aren’t worth fighting for when they might cost taxpayers money.
Is your family struggling? Where to go first?
In the Des Moines area, Nina recommends starting with Child Serve.
There are also support groups on Zoom through NAMI-IA for families working through the DHS courts. DM me for Nina’s email address to get more info on this group.
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