There are many afternoons when Sue Unangst comes home from work and aches to take a nap.

But even if her body would allow it, her mind would resist.

What if he breaks the windows in his room again?

What if he leaves the house and runs into traffic?

What if he turns on the oven and burns down the house?

“I live in constant fear that he’s going to die,” Unangst said of her 12-year-old son Bruce, who has level 3 autism spectrum disorder and other behavioral diagnoses. “He’s so high need, and it’s just me.”

Unangst is one of hundreds of parents and caregivers of disabled children across the state on a waitlist for services through MaineCare, the state’s public insurance program. Maine has long struggled to adequately provide both in-home and residential care for children with advanced behavioral needs, but the problem has worsened in recent years. The same workforce shortage that plagues many other industries has made it difficult for state-contracted agencies to recruit and retain behavioral health professionals willing to take on the challenging and sometimes dangerous work.

This month, the U.S. Department of Justice sued the state of Maine for allegedly violating the civil rights of disabled children. Among the allegations are that the state has failed to invest in community-based providers and that it has been “unnecessarily segregating children with behavioral health disabilities in hospitals, residential facilities and a state-operated juvenile detention facility.”

Maine was first put on notice by the Justice Department in 2022, meaning it has had two years to fix deficiencies in the system.

Department of Health and Human Services officials are negotiating a potential settlement and would not be interviewed for this story, but spokeswoman Lindsay Hammes said the state remains committed to providing the right services at the right time for children. Access challenges started under the previous administration, she noted, and the pandemic both contributed to more behavioral challenges for children and “profoundly affected the behavioral health workforce.”

Gov. Janet Mills, in a news conference Friday at the University of Southern Maine, sidestepped a direct question about children languishing for months in hospital emergency departments.

“I’m not going to comment on (ongoing) litigation,” Mills said. “We’ve been talking to the Department of Justice for a couple years about this matter, and we’ve also pumped a half a billion dollars into behavioral health management in recent years.”

Mills insisted that the state has “branched out” and “expanded mental health services” in a number of areas.

But Nancy Cronin, executive director of the Maine Developmental Disabilities Council, a quasi-governmental agency funded by federal and state dollars, said Maine’s system has failed too many children.

“It’s time to care about our kids,” she said. “These are kids who haven’t had voices and we are not paying good enough attention to.”

Caregivers and family members like Unangst hope the legal action focuses more public attention on the problems and forces the state to make improvements.

“I thought maybe if this starts getting out there, people will start listening,” she said. “I’m not the only family going through this. We’ve always been sort of hidden and I think the assumption is that we’re all just managing on our own, but that’s not the case. We’re suffering here.”

Eliza and Andy Watson of Gray are also on waitlists for in-home services for their 9-year-old son Hunter. Their son is an in-patient at Spring Harbor Hospital in Westbrook, where he’s being treated for behavioral health conditions.

Hunter’s hospitalization could have been prevented if they had received consistent in-home services, the couple said. But they lost that support a year ago.

Another child, Abby Bedard of Bingham, has spent months living at Redington-Fairview General Hospital in Skowhegan because she can’t get a placement in a community-based home.

Bedard, 13, has cerebral palsy, epilepsy and other emotional challenges that elevate the risk that she might harm herself or family members. Bedard’s parents only wanted to keep her safe when they brought their daughter to the hospital as a last resort, never thinking that she’d still be there many months later.

‘THEY ARE TURNING THEIR BACKS ON US’

The Unangst family lives in a rural part of Winthrop, 10 miles west of Augusta. A sign on the front door warns visitors that a child with autism spectrum disorder lives here and might run away or resist help.

When Sue Unangst answers, one hand is on the doorknob and the other is holding Bruce’s shirt. Tightly.

She repeatedly apologizes for her messy house. “I don’t get to clean a lot,” she said.

Bruce was diagnosed at a young age with autism spectrum disorder. He’s nonverbal and needs help to eat, bathe, even go to the bathroom. He’s sometimes aggressive, too, mostly toward himself.

He used to run into walls, face first and at full speed. He’s gotten so many bruises that Sue has to carry a doctor’s note saying he isn’t being abused so that she can take him in public without fear of someone calling child protective services.

And as he’s gotten older, his increased strength and diminished understanding of his ability to cause harm has been a dangerous combination.

“You have to have hands on him all the time,” she said.

Sometimes, though, that’s not possible. So, she tethers herself to him with a harness.

When Bruce was younger, a behavioral specialist came to his home five days a week, providing him with structure and affording his mother much-needed respite. Sue has two other children, one of whom also has special needs, although not as severe as Bruce’s. Her husband died 10 years ago.

After the pandemic hit, Unangst lost her in-home care worker and still hasn’t landed a replacement. Instead, her father helps as often as he can – he even sleeps on the couch some nights so he can be there early to get Bruce ready for school.

Based on Bruce’s diagnoses, the state is required to provide him – and thousands like him across the state – with a certain level of care. But that’s not happening.

He is now on three different waitlists – one for in-home support, one for temporary hospitalization at Spring Harbor Hospital and one for long-term residential care. Every six months, his mother must reapply for services.

“I work at a psychiatric center,” she said, referring to Riverview in Augusta. “I’ve seen what happens when people don’t get care at an early age. It’s not right. It’s not OK. They are turning their back on us.”

Some of his behavior changes are reactions to medications. But to properly regulate his prescriptions, Sue would need him in a supervised medical setting such as Spring Harbor.

Several months ago, Sue was scared for Bruce’s safety and took him to the emergency room at MaineGeneral Medical Center in Augusta. They had to wait four hours before anyone came to see him, and then they were told to wait longer. But Bruce’s behavior was only getting worse, so she left.

“I never heard from them again,” she said. “Except for a $500 bill.”

‘A FAILURE OF THE SYSTEM’

Eliza and Andy Watson’s son Hunter is currently an inpatient at Spring Harbor Hospital, receiving behavioral health treatment. But they say he may have avoided hospitalization if their family had gotten the help they needed from DHHS.

“This is a failure of the system,” Eliza said. “If we had in-home help, we would have been more likely to keep him home, and in the community.”

The family has received on-and-off services from DHHS since 2020, but their in-home care ended a year ago.

Experts who used to come to the home helped them recognize and manage Hunter’s behavioral issues.

“Because they weren’t there every day, they would notice changes in Hunter that sometimes we missed,” Eliza said. When the services were most effective – and the patchwork of services they received varied in quality – the social workers would teach Eliza and Andy communication skills used to deescalate situations with Hunter.

Hunter has trouble regulating his emotions – especially when he becomes angry – and without consistent help, it seems like anything they do can set him over the edge. The Watsons adopted Hunter from the foster care system. They suspect he was abused but don’t know exactly what happened to him before they began caring for him when he was 5.

Hunter loves the outdoors, including camping, swimming and fishing.

But Eliza said Hunter’s “fight-or-flight response 90% of the time is to fight, and that will include anything, punching, kicking, scratching, spitting and using any object against you.”

“When he becomes fixated on something, and you tell him ‘No,’ in his eyes we no longer are the parents, but instead we become the obstacle in the way, and he will do anything he can to remove the obstacle,” Andy Watson said. “I call him the ‘other Hunter,’ the ‘different Hunter.’ ”

The “other Hunter” emerged one August day when they were planning on setting up a campfire. Andy said he went into the house for a few minutes, and when he came back out, Hunter had tried to start a fire by himself and had gotten hold of a can of lighter fluid.

“I told him, ‘That’s bad news, you need to stop,’ ” said Andy, who works at Lowe’s and is a mapmaker. Andy said he feared his backyard might turn into a forest fire.

Hunter became enraged, doused Andy with lighter fluid and tried to set him on fire with a lighter.

Andy rushed Hunter to a guest room – a room they use to help calm Hunter down – but Hunter was able to knock down a door to get to Andy.

Eventually, Andy had to barricade himself in another section of their home, and then later in his truck.

He called the Maine DHHS crisis hotline, but no one was available. He called Eliza, who rushed home, and then 911.

Police arrived and took Hunter to Maine Medical Center’s emergency department. That same night, Hunter was sent home, but two days later, his emotional state deteriorated and he was admitted to Spring Harbor, where he has been ever since. He’ll be able to return home as soon as they can stabilize his behavior with medications. Due to the hospitalization, Hunter requalifies to receive support services, but the Watson’s are still on waiting lists.

When the in-home help is consistent, Hunter listens better, is less aggressive and is more trusting of adults, the Watsons said. However, it takes several months for Hunter to get used to and trust the clinicians and social workers.

“The whole point is if they receive the right level of care, then these kids can become functional people in the world,” said Eliza Watson, owner of Two Mums Kitchen. “When he’s not the ‘other Hunter,’ he is a delightful, curious, loving and inquisitive child.”

‘IT’S NOT A PROBLEM THAT’S JUST SOLVED’

Discussions between the Justice Department and Maine health officials are ongoing. The case is likely to either result in a settlement or lead to a consent decree under which the courts take control of a portion of Maine’s system.

Other states are facing the same challenges. The Justice Department has put Utah and Rhode Island on notice for similar violations cited in the Maine lawsuit.

“I really feel like there is momentum to move the system. There’s a sense of urgency now,” said Cronin, with the disabilities council. “But the pressure needs to continue.”

Cullen Ryan, who leads a statewide advocacy group called the Maine Coalition for Housing and Quality Services and is the parent of a child with special needs, said the challenges with providing services have been “boiling at a low simmer for a long time.”

“But it’s not a problem that’s just solved … because I think our system is such that it looks at things short term, instead of building systems and investing in them,” he said.

Meanwhile, families are the ones who suffer.

“A family doesn’t know they have signed on to this really challenging situation just by virtue of giving birth to a child,” Ryan said.

One area that could be improved, Cronin said, is increasing reimbursement rates for services so care providers can be paid more. While the rates have improved recently, wages in the private sector have increased more.

Jayne Van Bramer, president and chief executive officer of Sweetser, a nonprofit agency that provides children’s services, said a new program called the ACT (assertive community treatment) Team works to provide comprehensive in-home and community services.

Sweetser has funding to serve 25 children in southern Maine, and Van Bramer said they’ve so far avoided workforce shortages because the state gave them enough money to provide $5,000 bonuses to attract and retain employees.

“It’s real money and it’s caused people to take these jobs,” she said.

But while the ACT Team is backed by the state and working to prevent crises in children, other programs that don’t get as much support have to be cut. School-based behavioral health programs, for instance, had to be trimmed because the state did not come through with $1 million in needed funding.

The federal government’s lawsuit criticizes the state for not investing appropriately.

“To start, Maine could ensure that children actually receive the community-based behavioral health services that the state offers in theory and could address long waitlist by expanding capacity of community-based services and expanding the director care work force, especially in rural and frontier areas,” the suit says.

DHHS spokeswoman Hammes, however, said the MaineCare rate reform implemented in 2023 resulted in an investment of $237 million in state and federal funds for providers. DHHS also plans to provide annual cost of living adjustments to keep pace with inflation. Additionally, the most recent biennial budget passed by the Legislature and signed by Governor Mills included an additional $20 million in children’s behavioral investments to improve accessibility, availability, and quality and consistency of services.

One new initiative is a pilot program called The Children’s Behavioral Health Urgent Care Walk-in Center in Bangor, which serves youth in need of immediate mental health support. So far, approximately 150 children experiencing anxiety, depression, suicidality, and other behavioral health needs have visited that center.

According to the state’s online behavioral health dashboard, there are more than 18,000 children receiving some level of services, and 197 children are in residential care (62 of them out of state).

The collective waitlist for services for the most severely disabled children is 456, and the average number of days on the list ranges from 48 in Franklin County to 267 in Hancock County. Thousands more are waiting for less acute, but needed services.

Although the waitlists remain high, DHHS spokeswoman Hammes said they have come down by more than 20% since 2022

Van Bramer said when children are in crisis, they end up in emergency rooms and institutions, which are the most expensive for the health care system. Prevention is better for children, more effective and less costly.

“We have the money, but we are spending it in the wrong places,” Van Bramer said.

One of the wrong places, experts say, is spending money on behavioral health at Long Creek Youth Development Center in South Portland, which the Justice Department referred to it as a “de facto children’s psychiatric facility.”

Carol Garvan, legal director of the American Civil Liberties Union of Maine, said when children aren’t getting the services they need, “they act out in ways where police are charging them with offenses linked to their behavioral health needs.”

They then end up in Long Creek. “It’s a really sorry indictment on our system that youth prison is what passes for mental health care in Maine,” Garvan said.

‘I NEED TO FIND A PLACE HE’LL BE SAFE’

Most days, Sue Unangst wakes up at 4:30 or 5 a.m. to get ready for work and get Bruce ready for school.

When she leaves for work, her father stays with Bruce until a van comes to take him to Margaret Murphy Center in Lewiston, a specialized school for children with developmental disabilities and emotional/behavioral disorders.

Unangst comes home by 4 p.m. and makes dinner, first for Bruce, then for her two older children.

It’s been just the four of them for the last decade.

In 2014, Sue’s husband, Eric “lost his fight with depression,” and took his own life.

She pauses to wipe away tears. “All he wanted was to be a good dad,” she said.

Eric was an Air Force veteran. A picture of him in his uniform still hangs on the fridge in the kitchen.

After dinner, Sue typically takes Bruce for a walk, but not before strapping him into a big stroller. She gives him medication at 8 p.m. that is supposed to calm him down and help him sleep.

“But he might rock and roll until midnight,” she said.

Bruce now sleeps in the same room as his mother. He used to have his own room until he kicked out one of his windows and tried to eat the glass.

She’s grateful her job allows her flexibility. If Bruce has a meltdown at school and needs to be picked up, she has to leave. If the only time she can meet with one of his specialists is between 8 a.m. and 4 p.m., she has to find time in her workday.

“I have no life. I work, I go home. I don’t go out, I can’t have friends,” she said.

Kylee Howard worked with Bruce for several years as a behavioral health professional in their home. When she left that employer for a different job, she wasn’t replaced.

Howard has kept in touch with the family and tries to come see Bruce once a month. “He’s just my friend now,” she said.

One Sunday this month, Howard went apple picking with the family. Bruce darted all around the orchard, smiling the whole time.

Howard gets emotional thinking about the gap in services for Bruce and how his behaviors have regressed since she was with him regularly.

“He was eating with a fork, he could use signs, he wasn’t hitting himself. The way he flourished … “ she said.

Howard confirmed what has long been a criticism of direct care work: that employees are not paid enough. She said she earned $16 an hour when she started and $20 when she left. Even though she developed a close bond with Bruce and the Unangst family, the work was challenging.

Still, the idea that Bruce has been languishing on a waitlist for services is unfathomable to her.

“It’s supposed to take a village,” Howard said, “and they are doing it themselves.”

Sue Unangst thinks a lot about growing up and living in Maine her whole life, working since she was a teenager and paying taxes.

It should be easier, she said. Not easy, because parenting is rarely that, just easier.

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