BANGOR, Maine – Thanksgiving week was supposed to be the last time Mackenzie Lever released his 8-year-old son Eli from Acadia Hospital.
Severe ADHD, problems with impulse control, and intermittent explosive disorder make it difficult for Eli to regulate his emotions. When he is frustrated, he physically attacks his mother. Before the COVID-19 pandemic, his behavior was more regulated thanks to a range of supports. In 2020, they either left or drifted apart, a format he struggles with.
Lever, from Bangor, had hope ahead of the holidays after a difficult time. Her son had been hospitalized five times since the start of the pandemic. In June, she decided it was best for him to stay in Acadia until he could get a residential bed. He was to go to a more therapeutic home in Cornville at the end of November.
On November 22, that hope was stifled. The house is expected to halve its capacity soon due to labor issues. Eli’s bed was gone and we don’t know when we will open it.
Although Lever brought him home for this vacation, Medicaid will not allow Eli to leave temporarily without risking losing his place in the queue for a residential bed. He has now been hospitalized for six months. His mother visited him on Christmas.
Eli is one example of dozens of children in Maine with behavioral and intellectual disabilities awaiting appropriate placement and a symptom of a national health workforce crisis. Many languish in emergency rooms, straining hospitals’ capacities and their mental health. In this way, Eli is fortunate to be placed in one of the few psychiatric hospitals in Maine, where he receives therapeutic support. His mother still wonders how long he can last there.
“You’ve probably heard that it takes a village to raise children. These kids in particular need a very specific type of village, ”Mackenzie said. “From 2020, our villages have been destroyed for all these children, just like mine. “
It is not known when Eli will find better treatment. Although he cannot leave the hospital for the bank holiday weekend, Lever said she will be able to visit him this Saturday in the ward.
The Cornville house Eli was supposed to visit is run by Spurwink, a nonprofit health and education organization that serves thousands of people across the state. It has closed a third of its children’s residential facilities in the past year, representing 28 beds, CEO Eric Meyer said.
But like many healthcare 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. Cornville House can accommodate up to 24 children, but currently can only accommodate 12 beds.
“It’s been really heartbreaking for the board, for the staff, for everyone,” he said of the closures. “Spurwink has been doing this since the 1960s; it is 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 children can benefit from day treatment as well as education in some of its schools.
Prior to the pandemic, Lever said Eli received several types of therapy and supports that helped him establish a routine. After the schools were closed in March 2020, it switched to virtual learning and some treatments were also put online. Although Lever said she was able to maintain therapy at home, that wasn’t enough to keep Eli stable.
“Her emotional regulation has taken a serious decline,” she said. “When that happened he got a lot more violent, a lot more emotionally unstable, to the point that I couldn’t meet his needs at home anymore.”
The typical stay for a child in Acadia is 27 days, said Brandi Walston, director of pediatric patient care at the hospital. Acadia is working to expand its capacity to 100 single beds as it welcomes more and more people with acute needs who are not safe in shared rooms.
The 24/7 closed hospital offers a few treatment options. Walston said they develop individual patient care plans and offer personal and group therapy. But Acadia is not designed for longer stays.
“Our team recognizes that there is definitely a need for services and we are doing our best to support patients and their families until we have a suitable and safe place to go,” said Walston.