I am writing to ask the Iowa legislative conference committee on SF 505 to approve section 100 of the bill, which calls for a Children’s Mental Health and Well-being Workgroup.
Out of frustration with the broken system, a group of us parents have formed the NAMI Iowa Children’s Mental Health Committee and are leading a Coalition of over 100 children’s mental health experts and advocates. This coalition is putting together a strategic plan to build an adequate children’s mental health system, from the local to the state level. We will complete this work by the end of this July and can offer the Children’s Mental Health and Well-being Workgroup a non-partisan document that prioritizes needed changes by urgency, cost and future cost savings for Iowa and its communities. This is a grass roots movement to do what the state should have already done.
I am a mother of wonderful 12 year old boy who struggles every day to stay alive. He has been suicidal since age 10. It is just that difficult for him to navigate living in Iowa with Tourette’s syndrome, mood disorder and autism. Constantly the public schools, public libraries and public recreation centers have failed him due to their lack of training and support for helping children with mental health issues.
He has faced bullying to such an extent that he does not feel safe in these places; teachers and special education administrators have over and over made his mental illness worse, not because they did not want to help him, but because they did not have the knowledge or resources needed to help children with severe mental illness. The police were called once by the school, and once again, they made the situation worse — because of a lack of training and understanding of mental illness.
The problem is not understanding the difference between a child who is misbehaving and a child that is experiencing psychosis, extreme anxiety or depression. My son has heard voices and seen things that were not there since he was 8. He cannot control his physical tics or his obsessive thoughts, which frighten him and make him constantly misunderstood by well-meaning people. What they perceive as a tantrum is often a meltdown of his being, overwhelmed by the undertreated neurological conditions with which he was born.
The Iowa systems for children are broken when it comes to mental illness — we need systems-change that can effectively help these children. It is in all of our interest — not only in terms of the well-being of Iowa’s children (both those with mental illness and those who go to school with them — that is all of Iowa’s kids) — but also in terms of public safety and the future expenses of preventable disability, incarceration, and homelessness.
People are moving out of Iowa because they cannot see a way to raise their kids here without them becoming more ill — I would move if I could. I love Iowa, but I love my son more — and quite frankly, Iowa is failing him and children like him.
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I hear similar stories over and over in our Iowa-wide support group for parents of children with SED (Serious Emotional Disturbance). And the stories come from every part of the state. Iowa can and must do better. I hope that Iowa’s leaders would never say, “good, let them leave — we are better off with out them.” We are talking about 13 percent of Iowa youth ages 8-15 and 21 percent of Iowa youth ages 13-18. Less than half get help. You personally know and love a family struggling with this — I am sure of it. They may not share their reality with you because of the stigma, but given the numbers (and mental illness does not discriminate based on income or one’s position in society), it only stands to reason that you do. Well, many of us mothers and fathers and grandparents have come together to break the silence — and we are not going away. Iowa cannot afford to give up on 21 percent of its youth, and as parents, who among us can give up on our children?
Please approve section 100 of Senate File 505 which calls for a Children’s Mental Health and Well-being Workgroup.
Other important items for children’s mental health that are either in the Senate’s or House’s appropriations bill / amendment are:
• $5 million to Reduce HCBS Waiver Wait List
• $5 million to Increase HCBS provider rates
• $240,000 to fund the Certified Behavioral Health planning grant (Excellence in Mental Health Act)
• Continue funding the Office of Substitute Decision Maker at its current level
• Continue funding the Technical Assistance Program at its current level
• Include provision prohibiting the administration from implementing cost savings measures for HCBS
• 20 percent Rate Increase for HCBS supported employment providers
As our elected officials, you have the power and responsibility to fix this crisis.
For more information, visit www.namiiowa.com/about-us-2/childrens-mental-health-committee
• Tammy Nyden is a mother and co-chair of NAMI Iowa Children’s Mental Health Committee, and Philosophy Professor at Grinnell College. Comments: email@example.com