Connie MacDonald works for the State Department at the US consulate in Jeddah, Saudi Arabia. It’s a dream job, and she loved living abroad with her two children.
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 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, especially anger.
“It hurt me. He was threatening to kill his brother. One of the last straws was that four people in the school held him for almost an hour to try to calm him down,” she said.
The American International School of Jeddah told her that her son could not return. His behavior was so severe that MacDonald began seeking residential treatment in the United States
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He found Intermountain Residential in Montana. Children in the Intermountain program learn to build healthy relationships through intensive behavioral therapy over the course of up to 18 months.
Intermountain Residential is one of the only facilities in the United States that serves children with emotional dysregulation, like her son.
MacDonald remembers crying hysterically when she left him in June, but the tears gave way to hope as her violent outbursts subsided over the following weeks and months.
“Now when we have our weekly calls, it’s very normal. It’s like talking to your baby again. It’s wonderful,” he said.
Intermountain is one of about a dozen programs in the nation that provide long-term behavioral health treatment for children under 10, according to the National Association of Therapeutic Schools and Programs. It is one of the only options for children under 4 years old.
Intermountain is located in a quiet neighborhood in Helena and has been treating children for over 100 years. Intermountain treats children with emotional disorders, behavioral problems stemming from mental illness or trauma, and other problems. They struggle with self-harm, severe depression, or violent outbursts that can lead to attacking other people or animals. Most families who come to Intermountain have tried medication, outpatient therapy, or even short-term residential treatment, all without success.
Long-term treatment programs like the one Intermountain offers are often a last resort for families.
It can take months before children with serious mental health and behavioral problems feel safe enough to open up to staff at Intermountain, said Meegan Bryce, who runs the residential program. Some children were traumatized or abused while adults were supposed to be taking care of them, he said. Living this way can leave them deeply fearful or resistant to adult interaction, even once they live in a safe environment. Bryce said Intermountain staff must gain the patient’s trust before working to understand the 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 build healthy relationships.
Intermountain parents and staff were shocked when the facility suddenly announced this summer that it would close its doors this fall, blaming staff shortages.
Some relatives threatened to sue. A law firm representing them argued in a September letter to Intermountain’s board that it has a contractual responsibility to end the treatment of children who remain at its residential facility.
Intermountain later reversed course, saying it would scale back in an attempt to keep the program open. But spokeswoman Erin Benedict said that’s no guarantee Intermountain can keep its doors open long term. Intermountain plans to decrease its capacity from 32 beds to eight.
Megan Stokes, until recently executive director of NATSAP, thinks that understaffing is not the full story of Intermountain’s problems.
“We’re seeing a lot of long-term facilities moving into what they call short-term intensive care. You can get insurance money easier,” he explained. Stokes said she knows of 11 long-term programs for children 14 and younger that have switched to offering only shorter stays, from 30 to 90 days.
Short-term programs are cheaper and insurance companies pay them more quickly, Stokes said. Over the course of a year, short-term programs can handle more patients than long-term residential facilities. That can make them more profitable to run.
But these programs aren’t likely to help kids who might drop out of Intermountain. In fact, short-term programs may cause them harm.
“The problem is that the child gets out of that shorter stay, or they do well and maybe six months down the road they don’t have the tools in their toolkit to continue this, and now you’re labeled as treatment-resistant , when that child was not resistant to treatment,” Stokes said.
Children labeled resistant to treatment may be rejected from other short-term programs.
For now, parents of children at Intermountain are looking for other treatment options because of the uncertainty about whether Intermountain will remain open. Parents told NPR and KFF Health News that they had to sign up for waiting lists that can take a year or more to clear the few programs that take children 10 and younger. It is if they can find facilities that accept their children at all.
Stacy Ballard has been unable to find a facility willing to treat her 10-year-old adopted son with reactive attachment disorder who is currently at Intermountain. The condition can make it difficult for children to form an attachment with their family. Ballard said her son can be extremely violent.
“He was walking around our house at night thinking he was going to kill us all, and he said it was almost night that he did that,” Ballard explained.
Facilities that treat children his age generally do not treat children with a diagnosis of reactive attachment disorder, which is often associated with severe emotional and behavioral problems.
MacDonald still can’t find another facility that could be a safe option for her son. He was to complete 14 more months of treatment at Intermountain.
She said she can’t afford to keep her son at Intermountain because of the uncertainty about whether it will stay open.
So, he prepares to leave Jeddah and return to the United States, taking a leave of absence from his job.
“I’m going to take him to my family’s place in South Carolina until I can find another place for him,” she said.
This article is from a partnership that includes MTPR, NPR, and KFF Health News.
KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of the core operating programs at KFF – an independent source of research, polling and journalism in health policy. Find out more about KFF.
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