Six days being held behind locked doors in the hospital. A 12-year-old in handcuffs. A child held in seclusion for not complying with hospital staff. Wait times stretching into years to access appropriate services. Driving hours to access services in western Iowa. A parent driven to the brink of suicide by the lack of support for her two special-needs adoptive sons during the pandemic.
These are the stories that Gov. Kim Reynolds, a few lawmakers and members of the Children’s Behavioral Health System State Board heard Friday as the board prepares to bring its agenda to the Statehouse. Several board members said they were in tears as they listened to the parents.
Children’s mental health to-do list
Here is Children’s Behavioral Health System State Board agenda for policymakers:
- Ensure stable and adequate funding of the Children’s System
- Continue service growth to all areas of the state including but not limited to core and core plus services
- Address challenges impacting the behavioral health workforce, including implementing strategies to enhance the current behavioral health workforce
- Implement universal behavioral health screenings with informed consent by child’s parent or guardian as identified in the 2019 Universal Screening Panel
- Continue to develop and implement statewide data collection pertaining to children with a serious emotional disturbance
- Provide funding to eliminate the Children’s Mental Health Waiver waitlist
- Conduct statewide resource mapping for children’s services
- Explore and correct gaps in services which are currently hampering effective care, including but not limited to crisis stabilization for youth with complex behavioral disorders
Nina Richtman of Des Moines, adopted two boys with mental health, disability and behavioral issues who require constant supervision. As a single parent, she relied on the boys’ school, respite care and therapy services to help her get through the week.
When the pandemic hit, those services, which she calculated as covering 59 hours a week, were quickly gone.
“I made it 204 days. And then I just couldn’t keep going any longer,” Richtman said. “I was so emotional, I was so overwhelmed. I could not stop thinking about death. And it wasn’t that I wanted to die. It was that I was so desperate for escape from my situation from the intensity of it, that I couldn’t shut off the thoughts about death. It was terrifying.”
Seeking help resulted in consequences for her kids. She checked into a psychiatric unit, which triggered a Department of Human Services case and a court custody case.
“And here’s the sad reality … you can do everything right. And you can still lose custody. And this is where I find myself,” Richtman said.
She said Iowa lacks services “in the gap space” between outpatient and out-of-home placement. The state needs therapeutic schools and classroom options. Iowa faces a severe lack of training for schools and agency staff for dealing with children who have experienced trauma.
Susan Nelson, a mental health provider in Iowa City, talked about reaching a crisis with her 12-year-daughter after years of missed diagnoses and outpatient therapy.
“And so that led to going to the emergency department and being concerned that she needed inpatient care because she was suicidal. I was not able to keep her safe in the home. And it was just at a point where I could not do it myself,” Nelson said.
Nelson spent six days in the emergency department with her daughter, 24 hours a day, in a locked room with no treatment being provided, waiting for a bed to be available in another facility. “And that was a really, really difficult time very difficult, very frustrating,” Nelson said.
When an inpatient facility finally became available, it was in a hospital hours away. Her daughter ended up traveling there in the back of a police car, adding to her trauma.
Nelson urged the board to create a youth mental health system that is specialized for children’s needs and not modeled after an adult system.
Nelson, Richtman and others emphasized the need for adequate, trained and appropriately paid staff at all levels of the mental health system. “If this takes years, we’re going to lose generations of children,” Nelson said.
Richtman pleaded: “Please remember our stories and use our stories for change.”