After 304 days in the emergency room, Bingham’s daughter finally finds a home

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

Her supporters cheered and booed as the 13-year-old wheeled her wheelchair out of the hospital’s emergency department and toward a van that would take her to her new home and a fresh start.

The happy scene was long awaited.

Abby had been stuck in the emergency room at Skowhegan Hospital 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 away from school for almost a year, separated from the community. She spent her vacation in the emergency room and didn’t have the opportunity to hang out with friends, eat dinner at home with her family, or participate in any of the typical activities enjoyed by other teens. His parents – Sue and Mike Bedard – visited him often and the hospital staff did what they could. But that didn’t change the fact that Abby was living in the emergency room because she couldn’t go anywhere else to get the care she needed and was entitled to under federal law.

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

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

Cronin defended 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 recommends a series of comprehensive reforms for the Maine Department of Health and Human Services — changes that could also help the state settle the federal lawsuit.

The Portland Press Herald/Maine Sunday Telegram highlighted Abby’s story that she was stuck in the emergency room in July. The Bedards said they believe the story may have helped spur action, as state officials were more willing to find a long-term solution for Abby after the publication of the story. The impending federal trial may also have played a role, and the work of advocates like Cronin certainly helped keep the pressure on, Sue Bédard said.

JOY AND PAIN

On Thursday, as Abby finally left the hospital and moved into her new home, the family expressed a mix of joy and pain over everything they’ve been through over the past 10 months.

Sue Bédard received a phone call from her daughter on moving day.

“Abby called me at 6 a.m. laughing hysterically,” Sue Bedard said. “The most important thing is that it’s going to be positive. Maybe we can spend Christmas together. She will be part of a basketball team in the Special Olympics.

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

“We had to move mountains to get to this point,” said Sue Bédard.

Mike Bédard says he is “happy and sad” at the same time.

“It was 10 months of thinking: ‘Is this going to happen, is it not going to happen, or when is it going to happen?’ ” said Bédard. And he said it’s still difficult to accept that Abby will no longer live with them in their Bingham home — even though he knows it’s the best for Abby, himself and his wife.

Abby suffers from complex illnesses, including cerebral palsy, seizures, intellectual disabilities, suicidal ideation, and difficulty controlling behaviors including hearing voices, self-harm, and assaulting her parents. After several attacks on her father, Sue and Mike Bedard called 911 and Abby was taken to Redington-Fairview Hospital a few weeks before Christmas last year.

The Bédards adopted Abby as a toddler from the Department of Health and Human Services, knowing that she suffered from cerebral palsy and was born into difficult circumstances. They were able to perform surgeries on him that allowed him to walk and also received medical assistance at home. Abby often uses a wheelchair but is able to walk with a walker and braces.

But Abby’s unpredictable behavior — the assaults often happened without warning, and Abby grew older and stronger — became overwhelming and required emergency room care and later transfer to a residential facility.

Tiffany Comis, the hospital’s chief nursing officer, said it is “unfortunately becoming a norm” to have behaviorally ill patients stay longer than necessary in hospital emergency rooms.

“This is not the right place for these patients,” Comis said. Nonetheless, the hospital did its best for Abby, providing her with behavioral health care, physical rehabilitation, and nutritional and emotional support.

“It was quite an accomplishment, in a chaotic emergency room environment, to provide comprehensive care,” Comis said.

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

The actual numbers 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, approximately 400 disabled Maine children with acute needs are on monthly waiting lists for various services, from in-home support to residential care. Wait times for services can be long, ranging from about six months to over a year, depending on the service.

The reasons for the shortage of services – a simple matter of lack of supply and demand – are multiple. But a persistent problem is the low wages of many workers in fields that care for children with disabilities, and the resulting labor shortage. Despite recent improvements in reimbursement rates that have helped raise wages, salaries are often not competitive with less demanding jobs in the private sector, advocates say.

A NEW HOUSE

Before leaving for her new home, Abby said she was looking forward to living somewhere outside of the ER.

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

After an hour-long van ride, Abby and her parents parked in the Treats Falls House parking lot in Orono, run by Independence Advocates of Maine.

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

“It’s very individualized,” Thibedeau said. “We focus on their lives in the least restrictive setting possible. But we are able to support Maine people with complex needs.

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

A sign outside his new room reads: “Today is a new day.”

Abby gasped when she saw her room decorated with Stitch sheets – from the “Lilo and Stitch” series – complete with a large Stitch stuffed animal on a nightstand.

“Watch this space!” » said Sue Bédard, hugging Abby. “I think all your things will fit here. This is your new home.

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