Health

Iowa parents tell of 'heartbreaking' struggle to find mental health services for their children

They wait for help, lack choice in doctors, services

Kelly Garcia, director of the Iowa Department of Human Services and interim director of the Iowa Department of Public He
Kelly Garcia, director of the Iowa Department of Human Services and interim director of the Iowa Department of Public Health, was among the state leaders who listened to Iowa parents on Friday describe their struggles in finding mental health services for their children. (Liz Martin/The Gazette)

Four Iowa women spoke about their experiences navigating mental health resources for their children in an emotional meeting Friday with the Children’s Behavioral Health Systems state board.

When Sarah Nelson’s daughter was 12, Nelson sought emergency care when her daughter was suicidal.

Nelson spent six days with her daughter in an emergency department in a locked room because she could not keep her daughter safe on her own in their home.

“I could not do it myself despite my best efforts,” said Nelson, of Iowa City, who is the CEO of Foundation 2 in Cedar Rapids. “I was there 24/7 in a room behind locked doors with my 12-year-old daughter, and she was not receiving treatment.”

From there, Nelson’s daughter was transferred in a police car to a hospital three hours away.

That’s “heartbreaking” for a parent and terrifying for a 12-year-old, said Nelson, who was unable to go with her daughter to the hospital.

“If I was fighting for my child’s life because they had cancer, I would be able to choose the doctors the hospitals and accompany them,” Nelson said. “It sends the wrong message and compounds our ability to get positive outcomes.”

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Within 48 hours, Nelson was informed her daughter was placed in seclusion for 14 hours even though she was not a danger to herself or others at the time.

The next day, Nelson went to pick up her daughter from the hospital, even though she was afraid it would be against medical advice.

“When you have a child who experiences suicidal ideation and unsafe behaviors, that is not a position you want to be in, to feel like there’s no place to go because that place could cause more harm,” she said.

As a crisis services provider, Nelson said she never imagined when her daughter was born that she would be accessing mental health services for her.

“We really want to look at what is appropriate for children,” Nelson said. “It shouldn’t be modeled after an adult system. Children have unique developmental needs, and we don’t want to create more trauma for them by having a system that isn’t compatible with what they need.”

Less help during pandemic

The coronavirus pandemic posed a challenge for Nina Richtman, of Des Moines, when she sought mental health services for her two sons when they were 12 and 13.

Before the pandemic, the family was receiving 59 hours a week in support between school, therapy and respite services, Richtman said, who spoke of the attachment disorders of her two adopted children.

When schools closed in March and other services quickly followed, Richtman was left on her own to parent and work full time.

“I made it 204 days, and then I just couldn’t keep going any longer,” Richtman said. “I was desperate to escape the situation. I couldn’t shut off the thoughts about death. It was terrifying and unlike anything I had ever experienced before.”

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Richtman sought treatment for herself in the emergency room. She was admitted to the psychiatric unit and one of her sons was taken to a youth shelter.

Her other son is currently in a mental health treatment facility.

She is fighting to regain their custody.

“When these things happen, families like mine can’t be punished for asking for help,” she said.

“We need trained professionals who can manage behavior,” she said. “We need care, compassion, creativity, advocacy and a society that can separate kids from their mental illnesses and see them for the person they are and the traumas they have suffered.”

‘No child should have to deal with this’

The parents agreed on the barriers to care — the scarcity of services, the wait times, the inadequate number of providers and the lack of trauma-informed care in schools, day care centers and the mental health system.

Mavis Anema, of Orange City, has to drive over an hour, and sometimes out of state to South Dakota, to access the right mental health services for her children.

Cayleen Mesecher, of Ankeny, said for immigrant parents the difficulty of accessing services and having knowledge of those services is “triple.”

Mesecher has been a foster parent for 10 years and adopted her son 10 years ago just before his sixth birthday.

“Due to the trauma my son experienced at such a young age and being removed from his birth family, he has struggles no child should have to deal with,” Mescher said. “Several times he just didn’t want to live.”.

Parents’ needs ‘top priority’

Gov. Kim Reynolds joined the hearing, held via Zoom, and thanked the parents for their comments.

“It’s crucial the needs of our parents are our top priority,” Reynolds said. “I’m extremely grateful we have parents with us willing to share our stories.”

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Kelly Garcia, director of the Iowa Department of Human Services and interim director of the Department of Public Health, said she hopes this conversation “sets the tone” as Iowa heads into the legislative session in January.

“What the pandemic has brought to light is where we have more work to do,” she said.

“We heard from folks who work in this field and still have trouble navigating our system,” Garcia said. “If that doesn’t tell us something, I don’t know what does. We have a lot to work on to ensure the system of pathways for how you access services are clear.”

Ann Lebo, director of the Department of Education, said the conversation is a “reminder of the essential services schools provide and when that’s absent, the impact that has.”

Priorities

The following priorities have been set by the children’s board this year:

• 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 children’s parent or guardian.

• 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.

Comments: (319) 398-8411; grace.king@thegazette.com

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