BANGOR, Maine — Thanksgiving week was supposed to be the last time Mackenzie Lever walked Eli, her 8-year-old son, out of Acadia Hospital.
Severe ADHD, impulse control issues and intermittent explosive disorder make it difficult for Eli to regulate emotions. When frustrated, he physically lashes out at his mother. Prior to the COVID-19 pandemic, his behavior was more regulated thanks to a range of supports. In 2020, they went away or went remote, a format he struggles with.
Lever, of Bangor, was hopeful prior to the holiday after a difficult stretch. Her son had been hospitalized five times since the start of the pandemic. By June, she decided it would be best for him to stay in Acadia until he could get a residential bed. He was supposed to go to a more therapeutic home in Cornville in late November.
On Nov. 22, that hope was snuffed. The home would soon have to cut its capacity in half due to workforce challenges. Eli’s bed was gone and it is unclear when one will open.
Although Lever took him home for that holiday, Medicaid will not allow Eli to leave again temporarily without risk of losing his place in line for a residential bed. He has now been in the hospital for six months. His mother visited him there on Christmas.
Eli is an example of the dozens of Maine children with behavioral and intellectual disabilities waiting for appropriate placement and a symptom of a national health care staffing crisis. Many are languishing in emergency rooms, straining hospitals’ capacities and their mental health. In this way, Eli is lucky to be placed in one of Maine’s few psychiatric hospitals, where he receives some therapeutic support. His mother still wonders how long he can last there.
“You’ve probably heard it takes a village to raise children. These kids in particular need a very specific type of village,” Mackenzie said. “Starting in 2020, our villages were destroyed for all of these kids, just like mine.”
It is uncertain when Eli will find better treatment. Although he cannot leave the hospital for the holiday weekend, Lever said she will be able to visit him this Saturday at the ward.
The Cornville home that Eli was supposed to go to is run by Spurwink, a health and education nonprofit that serves thousands statewide. It has closed one-third of its child residential facilities during the last year, representing 28 beds, said CEO Eric Meyer.
But like many health care providers, stagnant Medicaid reimbursement rates have made it difficult to attract and retain staff and the pandemic has stifled the desire to work in person, he said. The Cornville home can hold up to 24 children, but it can only staff 12 beds right now.
“It’s been really heartbreaking for the board of directors, for the staff, everyone,” he said of the closures. “Spurwink has been doing this since the 1960s; it’s a big part of our identity.”
Spurwink offers a kind of one-stop shop for children with behavioral needs: The residential setting is more therapeutic than a hospital and kids can get day treatment as well as education at some of its schools.
Before the pandemic, Lever said Eli received multiple types of therapies and supports that helped him establish a routine. After schools closed in March 2020, he switched to virtual learning and some treatments went online as well. Though Lever said she was able to maintain some at-home therapy, it was not enough to keep Eli stable.
“His emotion regulation took a serious decline,” she said. “When that happened, he became a lot more violent, a lot more emotionally unstable, to the point where I couldn’t meet his needs in the home.”
A child’s typical inpatient stay at Acadia is 27 days, said Brandi Walston, the hospital’s director of pediatric patient care. Acadia is working to expand its capacity to 100 single beds as it get more and more people with acute needs who are unsafe to be in shared rooms.
The 24/7 locked inpatient hospital offers some treatment options. Walston said they develop individual care plans for patients and offer personal and group therapy. But Acadia is not designed for longer stays.
“Our team recognizes that there’s definitely a need for services and we do our best to support the patients and families until we have an appropriate, safe place for them to go,” Walston said.