For kids in crisis, it's getting harder to find long-term residential treatment

Connie MacDonald works for the State Department at the U.S. consulate in Jeddah, Saudi Arabia. It's a dream job, and she loved living abroad with her two sons.

But earlier this year, MacDonald says, her 8-year-old son started to become aggressive. At first the family thought it was ADHD. Her son was indeed eventually diagnosed with attention-deficit/hyperactivity disorder — as well as disruptive mood dysregulation disorder, which makes it difficult for her son to control his emotions, particularly anger.

"He was hurting me. He was threatening to kill his brother. One of the last straws was they had four people at school holding him down for almost an hour, trying to calm him down," she says.

The American International School of Jeddah told her that her son couldn't come back. His behavior was so severe that MacDonald started to look for residential treatment back in the U.S.

She found Intermountain Residential in Montana. Children in the Intermountain program learn to build healthy relationships through intense behavioral therapy over a long period, often for up to 18 months.

Intermountain Residential is one of the only facilities in the country that serves young children with emotional dysregulation, like her son.

MacDonald remembers crying hysterically when she dropped him off in June, but tears gave way to hope as his violent outbursts decreased over the weeks and months afterward.

"Now when we have our weekly calls, it's very normal. It's like talking to your child again. It's wonderful," she says.

Intermountain is one of about a dozen programs in the country that provide long-term behavioral health treatment for kids under 10, according to the National Association of Therapeutic Schools and Programs. It's one of the only options for kids as young as 4.

Intermountain is tucked away in a quiet neighborhood in Helena, and has been treating children for over 100 years. The children that Intermountain treats have emotional disorders, behavioral issues stemming from mental illness or trauma, and other issues.

They struggle with self-harm, severe depression, or violent outbursts that can involve attacks on other people or animals. Most families that come to Intermountain have tried medication, outpatient therapy, or even short-term residential treatment, all without success.

Long-term treatment programs such as this one are often a last resort for families.

Treatment takes a long time because it can take months before kids with severe mental and behavioral health issues even feel safe enough to open up to Intermountain staff, says Meegan Bryce, who manages the residential program.

Some kids have been traumatized or abused by the adults who they previously lived with, she says. That can leave children deeply scared of interacting with adults, and initially resistant to care and treatment, even after they've started living in a safe environment.

Bryce explains that Intermountain staff first have to gain a child's trust, before they work to figure out the root cause of the child's behavior.

It takes time before they can make an effective long-term treatment plan based on intensive behavioral therapy and building healthy relationships.

Closure notice leaves parents scrambling

Intermountain parents and staff were shocked when the facility announced suddenly at the end of the summer that it would close its doors this fall, blaming staffing shortages.

Some parents threatened to sue. A law firm representing them argued in a September letter to Intermountain's board that it has a contractual responsibility to finish treating children who remain at its residential facility.

Intermountain then reversed course, saying it would downsize in an attempt to keep the program open.

But spokesperson Erin Benedict said there's no guarantee Intermountain can keep its doors open in the long-term. Intermountain plans to decrease its capacity from 32 beds to eight.

Megan Stokes recently worked as executive director of the National Association of Therapeutic Schools and Programs. She thinks staff shortages are not the full story regarding Intermountain's troubles.

"We are seeing a lot of long-term facilities moving to what they call the short-term, intensive outpatient," she says. "You're able to get insurance money easier."

Stokes says she knows of 11 long-term programs for kids 14 and younger that have shifted to offering only shorter stays, of 30 to 90 days.

Short-term programs are cheaper and therefore insurance companies will pay for them more quickly, Stokes explains. Over the course of a year, short-term programs can treat more patients than long-term residential facilities. That can make them more lucrative to operate.

But short-term programs aren't likely to help the types of pediatric patients who are treated at Intermountain. In fact, short-term programs could even cause them harm.

"The problem is if that kid 'bombs out' of that shorter-term stay, or they do well — [but] maybe six months down the road they don't have the tools in their toolkit to continue that, and now you're labeled as treatment-resistant, when that kid wasn't treatment-resistant,'" Stokes says.

Kids labeled treatment-resistant can be turned away from other short-term programs.

Shrinking options for the most vulnerable kids

For now, parents of kids at Intermountain are searching for other treatment options, because of the uncertainty over whether Intermountain will remain open. Some parents told NPR and KFF Health News they've had to sign up for waitlists that can take a year or longer to clear, for the few programs that take kids 10 and younger. That's if they can find facilities that would accept their kids at all.

Stacy Ballard hasn't been able to find a facility willing to treat her 10-year-old adoptive son, who has reactive attachment disorder and is currently at Intermountain. The condition can make it hard for kids to form an attachment with their family. Ballard says her son can be extremely violent.

"He was walking around our house at night thinking about killing all of us, and he said it was almost nightly that he was doing that," Ballard explains.

Facilities that treat children his age generally won't treat kids with a reactive attachment disorder diagnosis, which often is associated with severe emotional and behavioral problems.

Connie MacDonald, the State Dept. employee, also can't find another facility that could be a backup option for her son. He was supposed to complete 14 more months of treatment at Intermountain.

She says she can't gamble on keeping her son at Intermountain, because there's too much uncertainty over whether it will remain open.

So, she's getting ready to leave Jeddah and fly back to the U.S., taking a leave of absence from her job.

"I'll take him to my family's place in South Carolina, until I can find another place for him," she says.

This article comes from NPR's health reporting partnership with MTPR and KFF Health News.