Left out: A family struggles with the child behavioral health system

At 1:30 a.m. on a Monday, Greg Rebello and Chris Hoijer got a call every parent fears: The people in charge of taking care of their eldest child, Adam, did not know where he was.

The family panicked, and Hoijer locked all the doors and downstairs windows in the house.

Hoijer said there was no telling what Adam – a child diagnosed with severe emotional and behavioral health disabilities that create impulsive, aggressive behavior – might have done.

“I didn’t know what his plan was,” he said. “At least if he tried to get in, we’d know he was in the house.”

Adam, 17, was housed at the Becket Family of Services’ enhanced residential treatment facility in Campton when he left the facility on the evening of June 4. 

By the end of the day, the family learned Adam – whose name was changed in this story – had broken into a Campton family’s house, stolen a car, and led local and state police on a chase that ended with a crash in Meredith. Adam was sent to the Sununu Youth Services Center, New Hampshire’s juvenile correctional facility, and faced charges of felony theft and breaking and entering, the family said, along with a misdemeanor trespassing charge.

In early July, Adam was sentenced to the Sununu Center until he turns 18 in December. It’s an outcome the family feels was almost inevitable.

Since he was young, Adam has been diagnosed with several severe behavioral health disabilities.

He’s spent time at multiple schools for children with disabilities, including the Lighthouse School in Chelmsford, Mass., and the Crotched Mountain School in Greenfield day programs; each time, he’s had to leave because of his aggressive behavior related to his disorders. He’s been hospitalized and has had several brushes with the law. Some have landed him at the Sununu Center before.

Now, Adam’s family is worried he won’t get the treatment he needs at the Sununu Center; and if they can’t get guardianship of him when he turns 18, he’ll eventually end up on the streets or in prison.

The Hoijer-Rebello family released dozens of psychiatric evaluations, letters, memos and documents related to their son’s education and treatment to the Monitor. They span a large part of Adam’s life, detailing everything from his early home life to recent brushes with the law.

They revealed a struggle that is all too common for New Hampshire children with behavioral disabilities: The state lacks adequate services to treat these children, particularly those with severe behavioral disabilities. And when the system prioritizes the “least restrictive” type of treatment first, these children often have to “fail up” in order to get the services they need.

“They’re trying to take that round peg and cram it into a square hole,” Rebello said in July, before Adam was sentenced to the Sununu Center. “It’s something we’re fighting, we’re fighting to get him an appropriate placement, but there really isn’t one.”

They are upset with the state for a long pattern of criminalizing their son’s behavior rather than treating him for mental illness.

Attempts to speak with Adam for this story through his family were unsuccessful.

Officials with the state’s Department of Health and Human Services wouldn’t speak about this case specifically, but said the Sununu Center has adequate resources to address the needs of children there.

“The Sununu Youth Services Center provides a safe and secure environment to allow youths to receive services to address their mental health needs,” public information officer Jake Leon said in a prepared statement.

At first glance, the Rebello-Hoijer family’s Concord home looks like any New England farmhouse.

The walk to the front door is peppered with the sounds of bleating goats, clucking chickens and a pair of barking dogs.

The mudroom opens onto a roomy kitchen, and a squashy couch is usually taken up by a black cat or two. Pictures of Adam, along with the family’s other adopted son Raymond, at various ages adorn the walls.

The cozy atmosphere shatters when doors open. An alarm sounds, accompanied by a robotic voice announcing which door was opened. If the boys’ doors open, what Hoijer calls the “missile launch” sounds, a loud, blaring alarm is heard throughout the house. The windows are also alarmed, and two cameras watch the main doors.

The family said the alarms were necessary after Adam tried to run away from home by rappelling out his second-story bedroom window using a bed sheet in March 2016, Rebello said. Around the same time, he was also in trouble after hitting his father and attacking police. The family was worried about his safety, and theirs.

“As he continued up in the years, we had to ratchet up trying to keep him safe,” he said. “What really got him into a placement was that we couldn’t keep him safe anymore.”

Adam’s parents knew he was not going to be a typical child when they first fostered him at the age of 3½.

“We knew Adam was going to require more than your basic public education,” Rebello said. “... You could tell by his behaviors, they were really outrageous, hugely reactive.”

Several psychiatric evaluations the family released to the Monitor detail Adam’s story. His biological parents both had a history of substance abuse; his mother had a history of psychiatric placements, PTSD and bipolar disorder.

The parents separated when Adam was 9 months old, and he, along with his two half-sisters, lived in Barnstead for a time. His older sister was often his primary caretaker, and the family struggled to stay housed.

The Division for Children, Youth and Families took custody of Adam and his sibling’s in 2003 after they were left alone in a hotel room, and he was separated from his siblings. He was placed with his biological father.

In September 2003, Adam’s mother was found dead in her apartment; a month later, Adam was removed from his father’s care after he failed a drug test. A year later, Adam came to live in the Rebello-Hoijer household and was adopted when he was 5.

Adam has received many diagnoses throughout his life, but reactive attachment disorder seems to be the one that sticks the most. The American Psychological Association characterizes the disorder as a “consistent pattern of inhibited, emotionally withdrawn behavior,” where a child rarely seeks or responds to comfort when distressed; minimal social and emotional responsiveness to others; and episodes of unexplained irritability, sadness or fearfulness during non-threatening interactions with others.

The disorder is caused by extremely stressful living conditions as a child, including neglect, social deprivation and inconsistent caregivers, the association says, that limit opportunities to develop stable attachments.

A 2011 report written by Green House Group psychologist Lara Kroodsma calls Adam a “social contradiction” and an “emotional burn victim.” Unable to read social situations, he’s always on guard and expects the worst from others, Kroodsma wrote.

“He has a tendency to interpret neutral events or interactions with other people as an attack,” she wrote. When that happens, Adam would lash out, or attack provocatively, to protect himself.

His parents said Adam often experiences intense mood swings, going from “I love you” to “I hate you” in moments. But they also know the child he can be when he feels comfortable and safe.

“He’s a very bright kid,” Rebello said. “He has a really good personality, a good sense of humor.”

Hoijer noted Adam’s love of animals, saying they brought on the goats and the chickens for him to care for. And while Adam and Raymond sometimes “get along as brothers do,” Hoijer said he knows Adam cares for his adopted sibling.

“He’s always been in support of the underdog,” he said. “And that’s gotten him in trouble before.”

A 2015 report from the Center for Start Services calls Adam “outgoing, friendly and articulate.” When he’s relaxed, he can be “cooperative, friendly and outgoing.”

“When he sees another in distress or hurt, he displays empathy and caring, and wants to help,” the report reads.

His parents said they feel those in charge of Adam’s well-being sometimes don’t see his good qualities or the reasons why he acts out.

“They see the behavior, and it becomes a wall for most people,” Rebello said. “They can’t see beyond that, they don’t consider the reasoning for the behavior and that really is his mental health impairment.”

Education has always been a struggle for Adam.

He started school at Beaver Meadow Elementary in 2009. It was the family’s first experience in “having to fail in order to receive the supports the world seems to operate on,” Hoijer said.

A May 2011 observation from the Green House Group in Manchester noted Adam is “unable to consistently demonstrate what he knows independently,” most likely due to processing, emotional, attending and sensory regulation dysfunctions resulting from his development.

The family knew Adam would need an individualized education program, but Adam had to go a whole year – and be removed from the classroom over 40 times – before he got one. It was a theme throughout his education; no matter where Adam went, his outrageous, aggressive behavior continued.

A March 2013 report from the Lighthouse School notes Adam had 342 crisis intervention incidents in the first 113 days of the 2012-13 school year alone. He was restrained 41 times for representing a threat to himself and others, the report notes.

The report details moments of violence, and sexually inappropriate and disrespectful comments.

Later reports from Crotched Mountain School document at least six instances in 2015 where Adam had to be restrained after getting aggressive with peers and staff. Sometimes, he was injured in the process.

Stealing a car wasn’t the first time Adam had a brush with the law.

According to a 2016 pre-dispositional investigation, Adam’s first contact with the juvenile justice system was at age 10. He was charged with three delinquent petitions of simple assault in 2011, charges that were later dropped because of Adam’s age and diagnoses.

Adam faced multiple delinquent charges in 2014, including resisting arrest and criminal threatening after Adam threatened a police officer with a sharpened pencil.

That case almost went to trial but was ultimately withdrawn – because Adam was ultimately found to be incompetent to stand trial by psychologist Michael Vanaskie.

Adam was charged with five total petitions in March 2016, four of which stemmed from Adam hitting Hoijer with a craftsman level after an argument. Hoijer called the police, and Adam got more aggressive, biting, kicking and head-butting the officers who tried to detain him.

Adam was found competent to stand trial in that instance and pleaded guilty to two counts of simple assault against police; the other charges were withdrawn.

It wasn’t the last time Adam was aggressive with police, either. He was arrested in early September 2016 after his parents reported he had run away from home. Police found Adam at home, punching a Toyota Highlander and then ripping off its passenger-side mirror. When approached, Adam punched and bit the officers and was Tasered. Ultimately, Adam pleaded guilty to two counts of simple assault against a police officer.

The prosecution tried to get Hoijer to testify against Adam in both incidents, but he refused. “He’s my son,” Hoijer said, shaking his head. “Our relationship is shaky as it is.”

The last incident was the first time Adam was placed at the Sununu Center pending trial. It didn’t take long for him to get in trouble – he assaulted a staff member within days of his placement after he assaulted a peer. A report written by staffer Sean Howlett said Adam head-butted a staffer while he was restrained, resulting in an injury above the staffer’s right eye.

Adam will be spending the rest of his childhood at the Sununu Center.

The family visits when they can, and Adam calls every other day. They said he seems confused and unclear about what the future holds.

“He’s thinking that he might live in a transitional house m-f and come home on weekends,” Rebello wrote in an email. “None of this stuff has been discussed with us as a family.”

His parents are frustrated because despite multiple placements and therapies, the state’s child welfare system has been unable to help him. And with no placements in-state that cater to children with severe behavioral disabilities – and what they say is the state’s reluctance to place Adam in an out-of-state facility – they feel like there are no options between day programs and the Sununu Center.

They also think the system doesn’t recognize Adam’s behaviors as being beyond his control.

“A parent feels very ineffective when they can only stand by essentially muted, while others make decisions regarding your child’s future,” they wrote in an email after Adam was committed. “Even more so when you vehemently believe that these decisions are not in the child’s best interest. Choosing to address only the behaviors without addressing the cause is bad medicine for mental health.”

They also worry that Adam will not receive the intensive therapy he needs to be able to enter the community again. They said Adam is a risk for self-harm, something they said the Sununu Center has not taken seriously.

Leon, the DHHS spokesperson, said the Sununu Center provides residents with a staff expert in mental health care, specifically focused treatment plans that are individualized to each resident’s needs, and open lines of communication between everyone involved in a resident’s life. Their goal is to address residents’ mental health needs when they first enter the center and give them what they need to return to the community safely and quickly. Residents begin their first day at SYSC under heightened observation, followed by a multi-day assessment process that includes a clinical mental health assessment and a drug and alcohol assessment. A treatment plan is developed for each child.

The Sununu Center has psychiatrists, mental health counselors, a special education case manager and many nurses with psychiatric training and experience, Leon said, who provide a range of therapeutic interventions.

“Communication between the youth, parents or guardians, and the treatment team is frequent and essential,” he said in an email. “This continuum of care is designed to ensure that youths receive mental health care services and supports while at the Sununu Center and upon their return to the community.”

The family is working on getting guardianship of Adam, a process they said takes six months. But even that is complicated. They feel Adam will be unable to live on his own but may be too dangerous to live with the family. They talk about getting a restraining order, and whether Medicaid will pay for an out-of-state placement.

Hoijer compared trying to care for Adam to being on a circular train track that occasionally derails – hopeless.

“It’s like we see the light at the end of the tunnel,” he said. “And then, all the sudden, it’s gone.”

(Caitlin Andrews can be reached at 369-3309, candrews@cmonitor.com or on Twitter at @ActualCAndrews.)