Connie MacDonald works for the State Department at the US Consulate in Jeddah, Saudi Arabia. It was a dream job, and she loved being abroad with her two sons.
But earlier this year, MacDonald said, her 8-year-old son began to become aggressive. At first the family thought it was ADHD. Her son was actually diagnosed with attention-deficit/hyperactivity disorder – as well as disruptive mood dysregulation disorder, which makes it difficult for her son to control his emotions, especially anger.
“He was hurting me. He was threatening to kill his brother. One of the last straws was they had four guys at school trying to calm him down for about an hour,” she said.
The American International School in Jeddah told her that her son could not return. His behavior was so severe that McDonald began seeking residential treatment in the United States
He found Intermountain Residential in Montana. Children in the Intermountain program learn to build healthy relationships through intensive behavioral therapy for up to 18 months.
Intermountain Residential is the only facility in the United States that serves young children with mental disorders like her son.
McDonald remembers crying hysterically when she released him in June, but the tears gave way to hope as his violent outbursts subsided in the weeks and months that followed.
“Now when we have weekly calls, it’s very natural. It’s like talking to your child again. It’s wonderful,” she said.
According to the National Association of Therapeutic Schools and Programs, Intermountain is one of about a dozen programs in the country that offer long-term behavioral health treatment for children as young as 10. This is one of the only options for children under 4 years old.
Intermountain is tucked away in a quiet neighborhood in Helena and has been treating children for over 100 years. Intermountain treats children with mental disorders, behavioral problems stemming from mental illness or trauma, and other problems. They struggle with self-harm, severe depression, or violent outbursts that may attack other people or animals. Most families who come to Intermountain have tried medication, outpatient therapy, and even short-term residential treatment, all without success.
Long-term treatment programs like the one Intermountain offers are often a last resort for families.
Meagan Bryce, director of the residential program, said it can take months for kids with serious mental and behavioral health issues to feel safe enough to open up to Intermountain staff. Some children have been hurt or abused when adults were supposed to care for them, she said. Living through this can make them deeply fearful or resistant to adult interaction, even once they live in a safe environment. Bryce says Intermountain staff must earn the patient’s trust before working to find the root cause of a child’s behavior. Developing an effective long-term treatment plan based on intensive behavioral therapy and building healthy relationships takes time.
Intermountain parents and staff were shocked when the facility suddenly announced this summer that it would close its doors this fall, citing 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 obligation to end the treatment of children in residential facilities.
Intermountain then reversed course, saying it would downsize in an effort to keep the program open. But spokeswoman Erin Benedict said there’s no guarantee Intermountain can keep its doors open long term. Intermountain plans to reduce its capacity from 32 beds to eight
Megan Stokes, until recently NATSAP’s executive director, thinks staffing shortages aren’t the whole story of Intermountain’s problems.
“We’re seeing a lot of long-term benefits in what they call short-term, intensive outpatient. You’re able to get insurance money easily,” he explained. Stokes said he knows of 11 long-term programs for children 14 and younger that have transitioned to offering only short-term stays, between 30 and 90 days.
Short-term programs are cheaper and insurance companies will pay for them more quickly, Stokes said. In a year, short-term programs can treat more patients than long-term residential facilities. This can make them more profitable to run.
But these programs likely won’t help kids who might have to leave Intermountain. In fact, short-term programs can cause them harm.
“The problem is if that kid bombs from that short-term stay, or they do well and maybe six months down the road don’t have the tools in their toolkit to continue that, and now you’re labeled as treatment-resistant, when that kid is treatment-resistant. There wasn’t,” Stokes said.
Children off-labeled treatment may then be rejected from other short-term programs.
For now, parents of children at Intermountain are seeking other treatment options because of the uncertainty of whether Intermountain will remain open. Parents told NPR and KFF Health News that they had to sign up for waiting lists that could take a year or more to clear for some programs that take children 10 and younger. That is if they find facilities that will accept their children at all.
Stacey Ballard could not find a facility willing to treat her 10-year-old adopted son with reactive attachment disorder who is currently at Intermountain. This condition can make it difficult for children to form an attachment to their families. Ballard said her son can be extremely violent.
“He was walking around our house at night thinking about killing us all, and he said he was doing it almost every night,” Ballard explained.
Facilities that treat children his age typically do not treat children diagnosed with a reactive attachment disorder, which is often associated with severe emotional and behavioral problems.
MacDonald couldn’t find another facility that could be a backup option for his son. He was scheduled to complete another 14 months of treatment at Intermountain.
He said he couldn’t gamble on keeping his son at Intermountain because of the uncertainty of whether it would stay open.
So, he is preparing to leave Jeddah and return to the United States, taking leave from his job.
“I’m going to take him to my family’s place in South Carolina until I find another place for him,” she said.
Reprinted from this article khn.orgA national newsroom that produces in-depth journalism about health issues and is one of KFF’s core operating programs – the independent source for health policy research, polling and journalism.