By Renée Speh
NAMI IA Children’s Mental Health Committee
If you haven’t found an organization that fits your needs, you can start one. That’s what some Iowa parents did two years ago, when we founded the National Alliance on Mental Illness (NAMI) Iowa Children’s Mental Health Committee. We are now leading the charge to reform health systems to meet the needs of children with mental health challenges.
As parents of children with mental health challenges in Iowa, we at NAMI Iowa Children’s Mental Health Committee understand how a mental health crisis is perceived very differently from a physical health crisis. Parents have told us about the lack of appropriate and effective services for their children. Some families report waiting with their children in the emergency room for hours, and up to five days to secure a hospital bed, for a suicidal or violent teen. Parents tell us about long waiting lists for child psychiatrists (three to six months) because of a statewide lack of psychiatrists. Children in many rural communities travel hours for a psychiatric appointment. Families wait two years for Medicaid waivers, which pay for crucial services like therapies and respite. Behavioral challenges resulting from mental illness are often referred to law enforcement by schools, forcing our children into the school-to-prison pipeline; this is especially true of our children of color. Our adopted children with high adverse childhood experience (ACE) scores face inadequate support at school, which impacts their capacity to learn. Many of our young people are sent to treatment facilities outside of Iowa, so parents must travel hours to visit their children.
We consider these services to be medically necessary: they treat mental illnesses and save lives. Appropriate and adequate services can help children remain at home and in the community and keep them out of institutions and the criminal justice system. They can help prevent suicide or murder during a mental health crisis. It costs far less to provide life-saving programs for children than to care for adults who never received preventive care.
Parents have started two Facebook groups for family members in Iowa. The NAMI IA Casserole Club is named for the traditional form of hometown support given during a crisis – the humble casserole – and is an online support group that bands together during children’s medical crises. The second group, Parents Creating Change, is an online advocacy network where parents can organize political action around children’s mental health.
A comprehensive, pro-active, non-criminalizing, individualized mental health system was developed for adults a few years ago, but there is none for children. Last year we created the Coalition for a Children’s Mental Health Redesign. The coalition was parent-led and involved 94 family members and professionals and 45 organizations from across Iowa (including hospitals, law enforcement and service providers). We published the “Statewide
Call for Action: A Strategic Plan for a Children’s Mental Health Redesign in
Iowa.” Our goals were to stop the criminalization of mental illness, build a statewide mental health system that includes an array of services, and be in full compliance with and enforce federal mandates (such as mental health parity laws, the Olmstead Act, Child Find, Early Periodic Screening Diagnosis and Treatment, and the Juvenile Justice and Delinquency Prevention Act).
The Iowa Department of Human Services then invited the coalition to help develop the Children’s Mental Health and Well-Being Workgroup, using the Call for Action as a foundation. The co-chairs of the coalition served as representatives of NAMI Iowa Children’s Mental Health Committee and the coalition. The DHS Workgroup consisted of professionals from a wide range of organizations across the state, including legislators. The The
DHS Children’s Mental Health and Well-Being Final Report resulted in a bill to establish the first phase (a crisis system) of a comprehensive system.