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Children's mental health: Young and struggling

A statewide effort to establish a children's mental health system is underway, but will it be enough?

Dec 18, 2018 at 9:11 am
    David watches a screen during a neurofeedback therapy session with Randall Lyle in Cedar Rapids on Thursday, Nov. 8, 2018. A's mother's insurance does not cover the therapy, so she has paid out of pocket. The therapy helps him self-regulate through the reward of increasing the size of the movie screen, and A says that since beginning the therapy his ability to keep his "upstairs brain" in control has improved. (Liz Martin/The Gazette)

    Kirsta’s son climbed down from peeking over the top of the fridge, where his cat was hiding, and accepted a plate of fish sticks from his mother. The nine-year-old slathered on sweet-and-sour sauce before digging in.

    The pair had about an hour before the child had an appointment with a psychotherapist, a new one he’d started seeing after an incident in April that led to a nine-day hospital stay in Des Moines.

    The incident, which occurred at school, stemmed from trauma and neglect in David’s early childhood. It thrust the family into a system they say is so complicated they struggle to find consistent services for David’s behavioral and mental health needs.

    Kirsta does not wish to identify herself and her son as she is concerned about the long-term implications of revealing her son’s identity; he’s referred to as David in this article.

    The pair recently marked the sixth Halloween they’ve spent together since Kirsta became his foster mother and later his legal guardian. David came to live with Kirsta in her Eastern Iowa home when he

    was 4. It was his third foster home in five months. Other foster parents couldn’t handle his behavior, she said.


    David’s Adverse Childhood Experience score, or ACEs, is 10 — the highest a child can score on the measure of childhood trauma. Because of these experiences, Kirsta said, David’s brain is wired differently than a normal child’s. His limbic system has become his primary defense, causing his first response to negative or adverse events to be to fight, flight or freeze. Typically, David’s reaction is to fight.

    Kirsta has taken David to various professionals through the years, and keeps a list of his medications — both those that worked and those that didn’t — in a journal.

    David began a new therapy following his hospital stay in April called neurofeedback. It’s been providing relief from his behaviors, but it’s one Kirsta has had to pay herself out-of-pocket because neither her employer insurance nor Medicaid will cover it.

    It’s factors like these that have led Kirsta to believe more could be done to support families such as hers who struggle to provide care for their children.

    She is not alone. Kirsta’s experience has joined a litany of complaints and concerns from parents around the state — as well as professionals who interact with their children on a regular basis, including teachers, emergency room workers, primary care providers and mental health counselors — who tell the state more can be done.

    And the state is listening.

    “We’ve never had a formalized system for children’s mental health. We’ve talked about it for many years — for decades — but we’ve never had a formalized system,” said Iowa Department of Human Services Director Jerry Foxhoven.

    ... It’s really important that your ZIP code shouldn’t determine the quality of mental health services a kid gets.”

    Addressing the mental health of Iowans has been a priority of state officials and lawmakers in recent years, but it has not been the first conversation about the gaps in mental and behavioral health care for those aged 18 and younger.

    The state of Iowa has established a governance system for adult mental and behavioral health care services, but no system specifically for minors has been implemented. Many leaders throughout the state are confident Iowans will see movement on a system within the next year, in part due to recent policies on an adult system.

    However, it begs the question — why hasn’t there been a children’s mental health system before? And what is different this time around?


    The Grant Wood Area Education Agency in southwest Cedar Rapids hosted a listening post in October that was attended by family members, psychologists, emergency room and primary care providers, teachers, college educators and dozens of other professionals who interact with children coping with mental health issues.

    It was one of nine public comment sessions throughout the state put on by the Children’s System State Board, the entity charged with making recommendations for a children’s mental health system in Iowa.


    Gov. Kim Reynolds set up the board in her second executive order in April, creating the board, she said, to “take a comprehensive look at what resources are currently in place and develop a strategic plan with specific recommendations to implement a children’s mental health system.”

    It’s a misnomer to say there’s not a system for children’s mental health in Iowa because a framework is in place, said board member Carol Meade, director of UnityPoint Health-St. Luke’s Behavioral Health Services.

    However, she said, the system is disjointed and disconnected.

    “All of these services we may have in our community are not well connected with each other,” she said. “It’s a lack of a system, or a systematic way of what’s really here in the system and how we can connect people with what they need.”

    And people come to the emergency room. UnityPoint Health-St. Luke’s has 20 inpatient beds for children, and it’s not unusual to have an additional five or six children waiting in the emergency room for a bed.

    “People come to the hospital because they know we will help them try to figure it out,” Meade said. “People who come do not always need an acute inpatient bed, but because they’re in crisis, that’s where they come.”

    Meade emphasized there is not a need for more inpatient beds. What Iowa needs is more preventive services, and more psychiatrists and psychiatric nurse practitioners to assist child patients.

    But more than anything, the system desperately needs a stable funding source.

    “How do we fund this in a sustainable way? That has been one of the challenges,” said Ryan Wise, director of the Iowa Department of Education and co-director of the Children’s System State Board.


    Wise said the board was explicitly charged with not only gathering new information — such as the public comment from sessions like the one in Cedar Rapids — but also building off previous work that’s been done in this area.

    What they’ve seen in past work is “an unmet need,” Wise said.

    “There are families and children really struggling for access for services that are yet to be coherent and systemic across the state,” Wise said. “A lot of the previous work has been around identifying gaps and potential opportunities.

    “Now, I think, this is about putting all of that work into place,” he added.

    It’s been a long time coming, said Rep. Mary Mascher, D-Iowa City, a retired teacher and a member of the Children’s System State Board.

    “We’ve been putting off the children’s system for 30 years,” she said. “We haven’t had an articulated system for as long as I can remember.”

    Many factors have prevented a state system from establishing itself in Iowa, board members note.


    Foxhoven, who is codirecting the board, said a surge in public interest is helping drive the political will to address the issue.

    “There was such a stigma attached to mental health 30 years ago that people didn’t want to talk about it,” he said.

    “Nobody did talk about it. So, as a result of that, people didn’t recognize the need as much.”

    According to Mascher, the delay also has to do with funding. No sustainable source for long-term funding for a mental health system has been identified, with lawmakers balking at raising taxes to fund such services.

    But with an adult mental health system firmly in place and operational, board members say the odds are better for a second system to go into effect as well.

    The state established several geographic regions of Mental Health and Disability Services, which are charged with coordinating and monitoring mental health and disability services in specific regions of the state, each with its own governing board.

    “I think, just as with the adult system, we have reached a tipping point in Iowa. Mental health was the No. 1 public issue of concern,” said Peggy Huppert, board member and executive director of the Iowa chapter of National Alliance on Mental Illness.

    Foxhoven said he is confident Iowans will see passage of a bill sometime during the session, which starts Jan. 14.

    “There’s total support from the governor on this, but I think also from the Legislature on both sides of the aisle,” he said.

    Read more

    After weeks of meetings, the Children's System State Board released its strategic plan Nov. 15, a report to serve as a road map for the implementation of a children's mental health system in Iowa.

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