When a child with Medicaid insurance needs intensive psychiatric care, doctors or therapists might make a referral to a private facility — even if they’ve never seen the place themselves.
It creates a cycle that leaves many families feeling stranded for help. And it’s how one child ended up at Kingston Academy in East Tennessee just weeks before it shut down.
Pamela Cole’s daughter Holly, now 9 years old, is autistic and has seizures. She began having violent and suicidal episodes as she got older. So the family, which lives in Hermitage, brought Holly to the psychiatric ward at Vanderbilt Children’s Hospital at the end of 2018, and her medical team recommended Kingston Academy, a residential treatment center near Knoxville.
On their first visit, Cole says, a little boy jumped in their car and asked to be taken away. Holly also said she wanted to leave. “She was so scared,” Cole recalls. “She said, ‘Mama, I just want to go with you.’”
More: This is the second part of a three-part series on Kingston Academy. Read the rest of Left Without Care.
But Cole dismissed both incidents at the time. Cole believed Holly’s medical team at Vanderbilt, who had told her this was the best place for Holly to be.
In state documents and in interviews with WPLN News, former Kingston employees said Holly had aggressive behavior during her time at the facility and tried to run away. But that was the reason she was sent there.
By the time she left Kingston, two months later, Cole says Holly was in worse shape. She’d lost 20 pounds. Records note bruising caused by staff members. Holly’s accounts of Kingston are similar to those of other kids, parents and former employees: Small children were housed with teenagers; children on suicide or aggression watch slept on mattresses on the common room floor; buildings were dirty and smelled.
It was those squalid living conditions that led to Kingston’s closure in early 2019. Holly was moved to another facility in East Tennessee. When Cole found out that it was also run by Kingston’s owners, she quickly brought Holly home.
She couldn’t believe Vanderbilt had sent Holly to Kingston.
“This hospital’s supposed to be so great. They’re equipped to handle these kids,” she says. “No, they’re not. They’re winging it just like we are.”
Research is a difficult task for parents
Vanderbilt declined interview requests about Holly’s case, citing patient privacy. In a statement, the hospital says its therapists aren’t able to visit all facilities personally and “were not made aware” of any problems at Kingston prior to 2019.
State incident reports of violence against kids at psychiatric facilities like Kingston are public record. Cole says she wished Vanderbilt had requested them.
Yet for children in an emergency situation, there are few other options in the region. In fact, Cole says Holly was back at Vanderbilt this summer after attacking her twin sister, who is also autistic, and threatening the family with a knife. This time, Holly was prescribed two weeks at a facility in Atlanta, called Laurel Heights.
Cole agreed, even though she hated the idea of sending her far away again. She also felt that two weeks of treatment wouldn’t do much good for Holly, Cole says. “She is in desperate need of some major help.”
While Holly was staying at Laurel Heights in Atlanta, Cole discovered a resident had died there in 2016, after staff improperly restrained him. And Holly claimed she was sexually assaulted by a boy during their time there. Cole says she’s received no detailed file from the facility about Holly’s stay.
Laurel Heights says it can’t comment on patients, and Vanderbilt didn’t respond to questions about whether it was aware of the 2016 death.
In a statement, the hospital says it “encourages” families to tour recommended facilities, and check out online comments.
But that’s usually not realistic, says Don Breedwell, Holly’s special education teacher. There are so few places for kids, scenarios at hospitals can play out like this, he says: “Your daughter is going to go there tonight. She has to leave our psych ward and we found a bed. So we’re going to get the bed while we can.”
Even if parents have the wherewithal to properly research facilities, during a crisis, he says they likely won’t find out critical information online, including “what their inspections have been like, what their staffing is like, how many professional staff members they have.”
Breedwell says that’s especially important to know, if families can’t rely on doctors to vet facilities.
Facilities may not even be the right answer for a child like Holly, Breedwell says. What she needs is someone to teach her to analyze her violent episodes, to figure out “what made that occur, without guilt, without making her feel that she’s done something wrong.”
‘What else am I supposed to do?’
Yet kids rarely get such one-on-one attention at facilities, says Gordon Bonnyman of the Tennessee Justice Center, a health care advocacy group. That usually requires customized care, like daily therapy. It’s more expensive, Bonnyman says, but if a child is on Medicaid — like Holly is — they’re entitled to that.
“Medicaid will pay for whatever medical services this child needs,” he says. “Whatever the complexities, they’re supposed to meet their needs.”
According to Bonnyman, providers don’t prescribe these costlier, long-term services to Medicaid patients, however. He says that’s because the private insurers that manage Medicaid have a history of denying them and pressure service providers to get kids to a “lower cost level of service.”
Holly does receive some in-home care through her Medicaid provider, BlueCross BlueShield of Tennessee. A spokesman tells WPLN News they even prefer that, over sending children to facilities. He also notes that they will investigate facilities — if notified of a problem.
But the insurance company did authorize sending Holly to Kingston and Laurel Heights. That’s left Pamela Cole feeling like no one was watching out for her daughter.
And as they’ve searched for help, Holly’s anxieties have continued to grow, along with her violent behavior. Cole says she and her husband have even boarded up Holly’s bedroom window, to prevent her from breaking it or running away. She says Holly was recently back at Vanderbilt again, after trying to strangle her uncle.
But this time, when Vanderbilt recommended a couple of other facilities — one in Memphis, or another near Knoxville — Cole says she refused.
“Not happening,” she says. “I really don’t think it’s going to do anything except cause more problems.”
The facilities seem to only exacerbate the problem, Cole says. So without better alternatives, Holly will stay home, for now. But she doesn’t think any child should have to suffer so much just trying to find help.
“It’s sad for me to have to watch it, because as a parent, what else am I supposed to do?” she says. “I don’t know anymore.”
This is the first in a second-part series by WPLN News contributor Natasha Senjanovic and part of APM Reports’ national, yearlong investigation into Sequel Youth & Family Services.