SKOWHEGAN, Maine — Wearing powder blue Stitch pajamas, Abby Bedard smiled broadly and thrust her arm out to point at dozens of family, friends and staff at Redington-Fairview General Hospital.

Her supporters clapped and hooted as the 13-year-old rolled her wheelchair out of the hospital’s emergency department and to a van that would take her to her new home, and a new beginning.

The happy scene was long overdue.

Abby had been stuck at the Skowhegan hospital’s ER for 304 days.

She resided for months in a small, sterile hospital exam room not designed for patients with Abby’s long-term mental, developmental and physical needs.

Abby was kept nearly a year away from school, separated from the community. She spent holidays in the emergency department, and didn’t get to hang out with friends, eat dinners at home with her family or do any of the typical activities other teens enjoy. Her parents — Sue and Mike Bedard — visited often, and the hospital’s staff did what they could. But it didn’t change the fact that Abby was living in the ER because there was nowhere else she could go to get the care she needs and is entitled to under federal law.

Young patients like Abby who languish for months in hospital emergency departments are part of the reason that the U.S. Department of Justice filed a federal lawsuit against Maine in September, saying the state is violating the Americans with Disabilities Act by failing to provide adequate services to children with disabilities in the Medicaid program. DOJ and state officials are discussing what happens next, but it could result in a settlement or court takeover of what the federal government says are insufficient services for some of the state’s most vulnerable children.

It’s outrageous that it took so long for Abby to be placed into her new home at Treats Falls House in Orono, said Nancy Cronin, executive director of Maine’s Developmental Disabilities Council.

Cronin advocated for Abby and her family and said their struggle is an example of how the state is failing many children with disabilities and their families. She is recommending a suite of comprehensive reforms for the Maine Department of Health and Human Services — changes that also could help the state settle the federal lawsuit.

The Portland Press Herald/Maine Sunday Telegram highlighted Abby’s story of being stuck in the ER in July. The Bedards said they believe the story may have helped spur action, as state officials were more responsive to finding a long-term solution for Abby after the story was published. The looming federal lawsuit may have played a role, too, and the work of advocates like Cronin certainly helped to keep the pressure on, Sue Bedard said.

Joy And Pain

Earlier this month, as Abby finally left the hospital and moved to her new home, the family expressed a combination of joy and pain from all that they went through over the past 10 months.

Sue Bedard got a telephone call from her daughter on the day of the move.

“Abby called me at 6 a.m., laughing hysterically,” Sue Bedard said. “The biggest thing is that this is going to be positive. We may be able to spend Christmas together. She’ll get to be on a basketball team, on the Special Olympics.”

Sue wiped away a tear, acknowledging the hardship and the bittersweet feelings.

“We had to move mountains to get to this day,” Sue Bedard said.

Mike Bedard said he’s “happy and sad” at the same time.

“It was 10 months of thinking, ‘It’s going to happen, it’s not going to happen, or when will it happen?'” Bedard said. And he said it’s still difficult to accept that Abby won’t be living with them at their Bingham home anymore — despite knowing that is what’s best for Abby, himself and his wife.

Abby has complex conditions, including cerebral palsy, seizures, intellectual disabilities, suicidal ideations and difficulty controlling behaviors, including hearing voices, self-harm and assaulting her parents. After several assaults on her father, Sue and Mike Bedard called 911, and Abby was taken to the Redington-Fairview hospital a few weeks before Christmas last year.

The Bedards adopted Abby when she was a toddler from the Department of Health and Human Services, knowing that she had cerebral palsy and was born into difficult circumstances. They were able to get surgeries for her that allowed her to walk and also received some in-home health assistance. Abby often uses a wheelchair but is able to walk with a walker and braces.

But Abby’s unpredictable behavior — the assaults would often occur with no warning, and Abby is growing and getting stronger — became overwhelming and resulted in needing ER care, and then a later transfer to a residential facility.

Tiffany Comis, chief nursing officer at the hospital, said it’s “unfortunately becoming a norm” to have behavioral health patients stay for longer than needed at hospital emergency rooms.

“It’s not the right place for these patients,” Comis said. Nevertheless, the hospital did the best it could for Abby, providing behavioral health, physical rehabilitation, and nutritional and emotional supports.

“It was quite a feat, in a chaotic ER environment, to provide comprehensive care,” Comis said.

There are only two years of data on how often this occurs. According to state data for pediatric behavioral health patients who were cared for in emergency departments, the average stay increased from 13 days in 2022 to 23 days in 2023. The number of pediatric patients who stayed more than 60 days increased from three in 2022 to nine in 2023.

The actual figures are likely higher for a number of reasons, including incomplete data sent to the state by hospitals, according to the Maine Hospital Association.

According to the federal lawsuit, about 400 Maine children with disabilities who have acute needs are on monthly waitlists for various services, from in-home support to residential care. Waits to obtain services can be lengthy, from about six months to more than a year, depending on the service.

The reasons for the shortage of services — a simple matter of supply not meeting demand — are myriad. But one persistent problem is low pay for many workers in fields that care for children with disabilities, and a resulting workforce shortage. Despite recent reimbursement rate improvements that helped boost pay, wages are often not competitive with less-demanding jobs in the private sector, advocates say.

A New Home

Before she left for her new home, Abby said she was looking forward to living somewhere besides the ER.

“I’m excited to make new friends and get my Xbox back,” Abby said.

After an hourlong van ride, Abby and her parents pulled into the parking lot at Treats Falls House in Orono, operated by Independence Advocates of Maine.

Catherine Thibedeau, executive director of Independence Advocates, said the goal of Treats Falls is for their clients with intellectual and developmental disabilities to “live meaningful lives” and to live as independently as possible while getting the care they need.

“It’s very individualized,” Thibedeau said. “We’re focused on them living in the least-restrictive setting. But we are able to support Maine people with complex needs.”

The rustic-looking group home is in a tree-lined, quiet neighborhood. There are community rooms, a common kitchen, and dining and living room areas, but the wood-trimmed facility is designed to look like a home, not an institution.

A sign outside her new room reads, “Today is a New Day.”

Abby gasped as she saw her room decorated with Stitch bedsheets — from the “Lilo and Stitch” series — completed by a large Stitch stuffed animal sitting on a nightstand.

“Look at this space!” Sue Bedard said, hugging Abby. “I think all of your things are going to fit in here. This is your new home.”

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