COLUMBUS, Ohio – The Steffens can’t go on a family outing to a park. Or stay with out-of-town relatives. Or, if 11-year-old Andrew is along, even stop by the grocery.

“We’ve withdrawn from the community,” said Andrew’s mom, Jamie Steffen.

And home isn’t exactly a refuge. It sometimes feels more like a holding cell, with alarms and locks on all the windows and doors to help keep Andrew, who has severe autism, from barreling out and causing harm to himself or others.

The Steffens are among an untold number of families doing their best to care for volatile children whose developmental disabilities and mental-health disorders have led to behavioral crises. Even when doctors say residential treatment is desperately needed – Andrew’s developmental pediatrician has made that recommendation, Steffen says – parents can face a near-impossible struggle to find, or pay for, a suitable center.

A last-ditch effort to save central Ohio’s only short-term residential center for children with severe autism and behavioral problems failed late last year, and the 14-bed Elijah Glen Center remains closed.

Steffen, who lives in Montgomery County near Dayton, said she and her husband can’t find anything available in the state. “I might have to accept a reality where I only see him once a month,” she said, her voice breaking as she spoke of treatment for Andrew in Indiana, Virginia or Florida.

Still, Steffen said, she is grateful that her husband’s military health insurance covers at least some in-home and residential care. Child-welfare advocates say families who can’t pay for behavioral-health treatment sometimes wind up relinquishing custody to public child-welfare agencies to obtain it.

Medicaid covers behavioral-health services but won’t provide for the room-and-board portion of expensive residential treatment. State-run developmental centers provide residential care for adults with disabilities, not minors in crisis.

“The one thing I really want to bring attention to is that if we were talking about a kid with a brain tumor, we would not be asking parents to send their kids miles away for months, nor would we be asking them to surrender custody,” Steffen said. “I know we’ve made progress with the (mental-health) parity law. But it’s not equal.”

Ohio needs both a holistic approach and a funding mechanism to support behavioral-health treatment for children, said Angela Sausser, executive director of the Public Children Services Association of Ohio.

In 2013, she said, six in 10 children in the custody of county agencies across the state came into care for reasons other than abuse or neglect. Many have intense mental-health needs and disabilities, including autism, and county agencies are able to use foster-care funds to pay for care.

“There are hard choices that parents are making right now,” Sausser said.

A joint legislative committee is studying the problems surrounding care of so-called multi-system youth, or those who need services from more than one system – mental health and addiction, child protective services, developmental disabilities and juvenile courts.

The committee is to make a series of recommendations, including ways to provide adequate funding and services.

“What’s great is that we have a panel of legislators really listening,” said Marla Root of Step by Step Academy, an autism center whose Worthington campus includes the closed Elijah Glen Center. “They’re asking good questions.”

Addressing the funding problem could lead to growth in the field, advocates say. Franklin County Residential Services, a nonprofit that has been providing services and residential support for people with developmental disabilities for more than 30 years, tried to help with the Elijah Glen Center but so far hasn’t been able to develop a viable plan.

Root says the center struggled and closed within a year because not enough families could find ways, short of surrendering custody, to pay for care.

That leaves families such as the Steffens wondering how far they will have to go to get consistent help. The stress in their home, meanwhile, is enormous.

“When he was younger and had an outburst, I could control it. Those days are long gone,” Steffen said of her nonverbal son, who weighs 125 pounds. He doesn’t understand how his actions – head-butting, slapping, shoving – affect others. He regularly tries to push his 15-year-old sister down the stairs.

Steffen said her daughter is kind and uncomplaining. But the parents wonder whether they’ve reached a point “where we’re not just asking her to love and accept her brother with autism. We’re almost asking her to accept being abused.”

The couple has even talked about sending her to grandparents. “Is that the right thing? To try to save one? But that still wouldn’t solve his problems,” Steffan said, crying softly. “It’s a mess. It really is.”

© 2016 The Columbus Dispatch
Distributed by Tribune Content Agency, LLC

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