SKOWHEGAN, Maine — Abby Bedard sat in her wheelchair in her tiny, sparse room in the emergency department at Redington-Fairview General Hospital. Her bed is a twin mattress on the floor. A chart on a marker board details the hospital’s plan for her each day.

The 13-year-old doesn’t want to be here. Her parents don’t want her here, either. Neither do hospital officials. Or the Maine Department of Health and Human Services.

Nevertheless, Abby has been living at the hospital’s ER for more than 220 days, spending Christmas, Easter, Memorial Day, the Fourth of July and every day in between on the hospital’s grounds.

She has cerebral palsy, gets seizures from epilepsy, and has numerous mental and developmental health challenges, including an intellectual disability, suicidal ideations and behaviors she can’t control, such as harming herself and assaulting her parents.

Nancy Cronin, executive director of Maine’s Developmental Disabilities Council, a quasi-government agency funded by federal and state dollars, said Abby’s situation is an example of a deficient health care system.

“This should not happen,” Cronin said. “We (as a state) do not know what to do. We don’t have a structure in place for children like Abby. And Abby’s case is not unique.”

It’s uncertain how many others are stuck in hospital emergency departments around Maine because the Maine Hospital Association says data collection is incomplete. But it is clear that more people are staying longer in ERs when they should be discharged, because of gaps in Maine’s care network and a shortages in places where they can go.

Her parents, Sue and Mike Bedard, said they love Abby but can no longer care for her at home, where she is not safe. So they took her to the emergency department in December 2023, after one of many episodes where she assaulted Mike.

They didn’t realize that, six months later, she would still be there, waiting for a placement in a residential home that could care for her psychiatric and physical needs. She’s gained weight while living at the hospital, and walking is harder for her now than it used to be. Despite having cerebral palsy, Abby is able to walk with a walker and braces.

“It’s hard being here,” Abby said quietly. She said she wants to be in a group home where she can live a more normal life. “I would love a placement because I could hang out with friends, go to day programs. I could go to school. I love going to school.”

Abby said she “hears voices,” and the voices become more frequent when she’s stuck in her hospital room.

“When I’m here, it doesn’t help with the voices I hear in my head,” Abby said.

She said the voices quiet down when she’s doing something active, such as coloring, working on schoolwork or playing volleyball.

Redington-Fairview has developed a plan for Abby that includes physical therapy four days a week, visits with a behavioral health specialist, a nurse who manages her care, and entertainment.

But Dr. John Comis, Redington-Fairview’s emergency department medical director, said ER services at hospitals are not designed to care for psychiatric patients.

“We are set up for if you have a heart attack, go to the ER. If you have a broken pelvis, we can fix your hip,” Comis said. “It is not the ideal place for a patient like Abby. You could have people screaming in the next room or going through drug withdrawal symptoms. It’s a real stretch for an ER to provide 24/7 psychiatric care.”

Comis said a decade ago, it was uncommon to have psychiatric patients languishing in emergency departments for months, waiting for services. Now, it’s a common sight, and while hospitals have adapted to the changes, such patients are better served by receiving care at facilities designed for them to live and get mental health treatment.

Sue Bedard said they’ve tried everything to secure Abby a placement, but there are long waiting lists for some, and other group homes can’t take her in because she has both physical and mental health needs. Trying to help her — and so far being unable to — feels hopeless and frustrating.

“We are totally drained in every way,” Sue Bedard said. “When we wake up in the morning, the first thing we think is, ‘Oh, my God, my daughter is still in the hospital.’ Every night, we cry and pray knowing that our daughter is still there.”

Cronin said she sees two major reasons why Abby has not been able to get a placement. First, most residential services will either treat a patient’s mental health needs or their physical needs — but not both.

“We have these silos of care that don’t talk to each other,” Cronin said. “We have created a slot for medical needs or a slot for behavioral needs, but not if a patient has both. There are other patients like Abby who need both.”

The other problem, Cronin said, is that Maine DHHS does not have a staffer who is ultimately in charge of Abby’s case.

“Everybody is passing Abby as a responsibility to someone else,” Cronin said. “We don’t have one person at the top who says, ‘Everybody, let’s get together and figure this out.'”

Cronin said “these children are invisible” to the state, and that needs to change.

How often patients languish in hospital ERs is difficult to say.

Maine only started collecting data on pediatric patients in similar situations within the past two years, and Jeff Austin, vice president of government affairs for the Maine Hospital Association, said there are holes in that data. Only about two-thirds of Maine hospitals submitted their data to the state, even though it’s required by law. There’s no such tracking of adult psychiatric patients in ERs, although adults can also be there longer than necessary.

The pediatric data is compiled in an annual report, but Austin said it undercounts the true number of children.

“There’s a lot more kids who need residential community treatment than who are listed in that report. It’s heartbreaking. It’s a major problem,” Austin said.

According to the 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. Those who stayed more than 60 days increased from three pediatric patients in 2022 to nine in 2023.

The overall number of behavioral health pediatric patients treated in hospital emergency departments has stayed about the same, decreasing slightly from 141 in 2022 to 138 in 2023.

Austin said part of the reason for prolonged stays in emergency departments is that demand for support services has increased at the same time capacity has decreased, so people have nowhere else to go.

“Finding facilities is difficult. The parents or guardians at some point don’t feel the child is safe in the home, and they end up in the ER. It’s the only door that’s open 24 hours a day, and that’s where people are showing up,” Austin said.

It’s also expensive. Emergency department stays can cost thousands of dollars per day, often at least twice the cost of residential treatment.

“We are paying a lot of money for really bad outcomes,” said Cronin, of the disabilities council. “So we are already spending a lot of taxpayer money, and the question is: Where do you want to spend it? Do you want to spend it on prevention and proper treatment, or do you want to spend it on the back end, stuck in the ER or in the juvenile justice system?”

MaineCare, the state’s Medicaid program, pays for ER stays for patients like Abby and also typically covers the cost of residential treatment.

Hannah Longley, clinical director of advocacy and crisis interventions for the National Alliance on Mental Illness Maine, said mental health conditions need timely care, just as any other medical diagnosis.

“We would be outraged if there was a child sitting in an ER for 200 days needing access to an endocrinologist if they had a diagnosis of diabetes. We would not see that as acceptable,” Longley said.

Lindsay Hammes, a Maine DHHS spokesperson, did not speak specifically about Abby Bedard’s case but said the agency is “committed to expanding access to meet the rising health needs of children and youth, and (we) are continuously examining best practices and recommendations on how we can improve our delivery system.”

Seeking Solutions

The causes of the bottlenecks that keep mental health patients stuck in emergency rooms are complex, and there are no easy solutions. Multiple shortcomings in the system — a lack of residential treatment, workforce shortages in health care and closures of other mental health programs — all reduce the overall availability of mental health services.

Waitlists for many mental health services can be long, and delayed treatment can cause patients’ health to worsen and their symptoms to escalate, making a visit to the emergency room more likely.

A 2022 survey by Maine’s Behavioral Health Community Collaborative of 17 nonprofits shows that the number of people on behavioral health waitlists in Maine for substance use disorder treatment and mental health services ballooned from 561 in 2019 to 8,774 at the end of 2021. A similar but separate survey conducted in 2024 reveals the problem has persisted, with waitlists nearing 9,000 patients.

Access to those services can help prevent a crisis that may otherwise send people to the emergency room, Longley said.

“During the pandemic, the need for mental health services grew, but as the need grew, we saw a diminished workforce,” Longley said. Nonprofit agencies have been lobbying the state for additional reimbursement rate increases that would help boost wages and attract more potential workers, especially in entry-level jobs like direct care providers. Reimbursement rates have improved recently, but not enough to keep up with escalating wages in other workforce sectors, advocates say.

The lack of residential services has led the state to place about 70 children in treatment facilities outside the state, said Adam Bloom-Paicopolos, executive director of the Alliance for Addiction and Mental Health Services, Maine, which advocates for nonprofit agencies that provide these services. Placing children hundreds of miles away adds trauma to families already dealing with difficult situations, he said.

“It comes down to there’s a lack of appropriate and safe residential placements, especially for kids with acute needs,” Bloom-Paicopolos said.

To help patients like Abby, Cronin said the Maine Department of Health and Human Services could apply for federal waivers, which allow deviations in the Medicaid program, to secure funding for patients who have acute mental and physical health needs.

Cronin said she will put together a proposal to obtain the needed waivers from the Centers for Medicare and Medicaid Services, which would include a blend of federal and state funding.

“Ultimately, if Maine gets a long-term waiver, we can get kids’ needs met sooner,” Cronin said.

But Hammes said “comprehensive services for these children are currently available under MaineCare without the funding restrictions associated with a waiver.”

Another proposal that could reduce the number of mental health patients languishing in emergency departments is a proposal by the Maine Hospital Association for a psychiatric residential treatment facility, a more secure facility that provides services for acute patients who don’t need to be in a psychiatric hospital.

Austin said the state put out bids for such a project but received none. So lawmakers this year added $2 million to the request for proposal, aiming for enough of a financial incentive to attract an agency to build a new residential treatment facility. The process is still pending, and it remains to be seen whether it will be built.

Hammes said MaineCare increased eligibility by making children eligible for coverage if their households earn up to 300% of the federal poverty level, or about $93,000 for a family of four. Among other benefits, that expands access to mental health services, Hammes said. Before 2023, eligibility was cut off at 208% of the poverty level.

Hammes said the state is also seeking additional federal funds with the aim of reducing mental health waitlists.

Abby’s Long Wait

While advocates work on trying to alleviate the shortage in services, Abby continues to wait.

Her favorite movie is “Lilo and Stitch,” and she has a Stitch bedsheet on her mattress. There is no bed frame under the mattress to reduce the risk of falls, Dr. Comis said.

Abby enjoys math and likes Taylor Swift and basketball. During a recent physical therapy session, despite 90-degree temperatures outside, she was determined to walk from the back loading bay to a front bench, and then played volleyball with Tyler Cates, the hospital’s athletic trainer.

She’s grown attached to her caregivers, even though she wants to get out and be with other teens.

She said she knows everyone is trying their best to get her out of the hospital.

“You are the best parents. I know you care about me very much,” Abby tells her parents with a shy smile.

Sue, 61, and Mike, 59, of Bingham, adopted Abby when she was a toddler, knowing that she had cerebral palsy and was born into a difficult situation without the care she needed. Mike had never had children but wanted a child. Sue had children from previous marriages but was too old to get pregnant.

They decided to adopt through DHHS, knowing that children from that agency likely were born under difficult circumstances and wanting to help.

“We fell in love with her the moment we saw her,” Sue said.

Abby was unable to walk several years ago, and Sue and Mike arranged for her to have surgeries in 2020 at the Shriners Children’s Hospital in Springfield, Mass. After successful surgeries, she can now walk with the help of braces and a walker.

But her mental health problems persisted over the years, and Abby was often suicidal. The couple removed sharp objects, but Abby got better at finding ways to harm herself. Teenage hormones took their toll as well, and mood swings would result in violent behavior. She would attack her parents for no reason, they said.

After assaultive episodes, “she would look at you say, ‘I don’t know why I do it,'” Sue said.

They qualified for home help, with DHHS workers coming in a few days a week, but it wasn’t enough. In December, a scary attack with Mike was a tipping point, and Abby was hospitalized at Redington-Fairview. Her parents visit every day.

“This kid deserves better than what she’s getting,” Mike Bedard said. “We’re not giving up. We want a future for her.”

© 2024 Portland Press Herald
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.