Billie Jean Sideris adopted her daughter in 2011 at age two from the state Department of Children and Families.
At age nine, Lindsey ended up in the hospital for the first time for psychiatric reasons.
During COVID, Lindsey’s mental state grew worse, and in November 2021 she was transported by ambulance to a hospital, only to be released the next day because she “did not meet the criteria for admission.” Two weeks later, she was back in the hospital.
“Since November of 2021, there have been eight 911 calls and seven trips by ambulance to the crisis unit at our local hospital,” said Sideris.
Records from Eagle House, where Lindsey stayed in spring 2022, show the then 11-year-old had been diagnosed with ADHD, Reactive Attachment Disorder and Disruptive Mood Dysregulation Disorder. She had been prescribed a number of medications, and undergone a plethora of interventions — including multiple stays in various mental health centers, private therapy, extended day treatment programs and intensive in-home services.
Sideris hired a lawyer. She enlisted the help of the Office of the Child Advocate. But when Sideris went to Carelon to request a residential placement for her daughter, her request was denied.
On April 19, Lindsey again ended up in the emergency room. But this time, Sideris refused to bring her home. According to Lindsey, her daughter had been physically aggressive toward her, her husband and her youngest son, and Sideris felt it was too dangerous to have her back in the house.
In response, the hospital called the Department of Children and Families, which filed a petition with the courts alleging neglect. Her daughter was placed in foster care.
“My daughter has the right to note that she’s worthy of help and love. She should never have been put back into a broken system. We should never have had to say that it wasn’t safe for her to come home. And we shouldn’t have been villainized for repeatedly asking for help,” said Sideris.
“It’s frightening to wake up that way”
Reactive Attachment Disorder is a relatively rare disorder in the United States, and is diagnosed in about 1-2 percent of the population. But in a state the size of Connecticut that adds up to as many as 17,000 young people under the age of 18.
When a baby is severely neglected — in particular, never picked up or held, and or had his or her needs met — the child can develop severe behavioral problems, including violent outbursts, manipulative behaviors and an inability to form long-lasting bonds with caregivers.
“When a baby is born, we cradle them. We look them into the eyes. We sing to them. We caress them. We touch them. And that’s how a child knows that they belong,” said Laura Langston, a licensed marriage and family therapist who specializes in early life trauma. “When they’re neglected, then nobody’s touching them. No one is talking to them. And so they shut down.”
Langston, who works with parents and children with Reactive Attachment Disorder, said these children “find a way to connect” as they get older by acting out — screaming, yelling and breaking things.
For Sideris’ daughter, time at home with her adoptive family was a major trigger of the behavior, and COVID exacerbated her symptoms. Family activities, like board game nights and birthday dinners, became triggering events.
“Being out of the house kind of helps keep her steady. But now we’re in COVID and we’re here 24/7, all together. And she really started to escalate,” said Sideris.
She told CT Examiner that her daughter would become violent toward her and her husband, hitting, punching and kicking. She would punch holes in the walls and hoard food and sharp objects. Sideris said the family was forced to place padlocks on the doors of her sons’ rooms to prevent Lindsey from stealing.
“She would come in my room in the middle of the night and I’d wake up and she’d be just standing over me in the dark, staring at me,” said Sideris. “It’s frightening to wake up that way.”
Lindsey missed 31 days of school during the 2022-3 school year, according to Sideris, and also tried to injure their youngest son, who is 16. When the Department of Children and Families came to the house to interview the family, according to Sideris, they told her that her son was “one of the most traumatized children they’ve ever met that doesn’t have an open DCF referral on him.”
But advocates, attorneys and parents who spoke with CT Examiner say that Connecticut’s mental health system is not prepared to deal with children with serious mental health needs. And in conversations with CT Examiner, they describe a one-size-fits-all philosophy that doesn’t take into account individual needs and an opaque system that denies requests – without justification or a process of appeal for higher levels of care.
“No one was really listening to us”
According to Sideris, the existing system, by withholding the level of care Lindsey needs, failed her family – a claim that goes to the heart of the broader philosophical shift away from residential care which may come at the expense of children with the greatest needs.
Sideris said she requested a residential placement from Carelon, an outside contractor with the Department of Children and Families and other state agencies that is responsible for evaluating and creating a treatment plan for children who struggle with substance abuse or serious emotional or mental health needs. The organization is also tasked with paying for treatment that private insurance or Medicaid will not cover, using funds they receive from the state.
Sideris told CT Examiner that she was first connected to Voluntary Care Management Services — the service that Carelon provides for these families — when Lindsey was 11 years old, in 2021. The child had been hospitalized in November, and sent to the Institute of Living in Hartford, and was involved in an extended-day program in Torrington.
Sideris said that Carelon assigned her a case manager to monitor the services her daughter received and to make and field recommendations. But Sideris said that Carelon would only accept recommendations from the “treatment team of record” — meaning whatever doctors or clinicians saw her daughter during her visits to the hospitals.
“You had these teams of people that had been working with her long-term, that knew the whole history, and then she’d go into the hospital and every time you went in, it was a different social worker that you were assigned with,” said Sideris.
Andrea Goetz, chief administrative officer, for the Child and Family Division at Carelon, told CT Examiner that the agency consults with the children’s families, their current medical providers and obtains information about their insurance coverage before making a treatment plan. Then, the agency’s medical director, a child and adolescent psychologist, has the final say on whether the child’s need matches a set of criteria that the agency uses.
She said the agency will listen to the recommendations of any provider who works with the child and wants to weigh in, but she said they focus on hospital personnel because those providers see the child in their most acute state.
The result, Sideris said, was that her daughter was repeatedly referred for in-home intensive services or extended day programs — things her daughter had already tried — rather than moving her to a more intense treatment program.
“No one was really listening to us, and we were just kind of caught in this circle,” said Sideris. “Basically [Carelon] would say, ‘Well, this is what her insurance pays for.’”
DCF Vice Commissioner Michael Williams told CT Examiner that part of the challenge with middle class families who have insurance through their employer is that their private insurance won’t pay for services that public insurance will cover.
“A lot of our services were built for folks from the ground up who are poor. They’re public sector services, Medicaid recipients, covered families, families without insurance who don’t have the ability to pay. We have an extraordinarily robust service system from the ground up for families like that,” said Williams. “The frustration that we have heard about over and over and over is this gap between what people are getting with their commercial insurance from their employer and that insurer not paying for everything that a person on Medicaid would get or a person without insurance would get.”
Another target of criticism from both Sideris and advocates was what they referred to as an “invisible checklist” used by the agency to make determinations about whether to approve or deny care. A denial is final — there is no process for appeal.
Goetz acknowledged that sometimes parents are disappointed with the agency’s findings, but noted that the agency’s goal was to do anything possible to keep the child at home.
“Kids going to residential or inpatient things — those are the highest levels of care. And we really want to make sure that everything else has been exhausted and tried before then,” said Goetz.
Data from Carelon showed that the organization approved 17 of 50 requests for residential treatment in 2022, or about 34 percent. Yet the amount of money the organization spent on residential treatment was sizable — more than $4.4 million out of a roughly $7 million budget.
“Nothing … that touches this”
Beyond cost, the reluctance to place a child in residential care reflects a larger stigma against “institutionalizing” children with extreme mental health challenges.
Frank Gregory, administrator of the children’s behavioral health community service system for the department, said that research has shown that residential placements have not been effective for improving children’s mental health. For this reason, the state makes it difficult by design for children to be placed in a facility.
“We have been very intentional with our service partners that we want to reinforce and strengthen the community service system, so that, whenever possible, kids are able to receive supports and services in their own family setting,” said Gregory.
Joseph Woolston, vice-chair for clinical affairs at the Yale Child Study Center and the model developer for Yale’s intensive in-home service program for children, said that it didn’t make sense to place children in residential settings when institutionalization of small children was known to be a cause of Reactive Attachment Disorder.
“With that historical information in mind, having a more institutional treatment, it doesn’t seem to be very sensible unless the child’s behavior is so dangerous and so out of control that that’s what is required,” said Woolston.
But Ani Desilets, partner at Just Us Law Group, which represents Sideris and other families with children who have Reactive Attachment Disorder, said that eliminating residential facilities left families whose children had a high level of need without any viable options.
“We’ve shut down most of the residential facilities for children because we just assume for every child a home and every child can live in a home,” said Desilets. “In the state of Connecticut, you essentially have a hospital where you can bring your child, or an in-home service or outpatient therapy, and that gap in the middle where a lot of these kids are not getting the services they need.”
Langston said that residential placements for children with reactive attachment disorder can be positive in certain situations. But the state of Connecticut, she said, has no residential facilities that can provide what these children need.
“There is nothing in the state of Connecticut that touches this,” she said.
“We have to roll the dice”
This leaves parents like Sideris describing what they see as a gap in the mental health service continuum — shuffling between in-home therapies that they say don’t work for their children, and the hospital emergency department.
Gregory noted that the question may center around the family the child is placed with rather than the child.
“The very sensitive part of the conversation is that, just because children can’t stay in one home doesn’t mean they can’t stay in any home,” he said.
Sideris maintained that she had done everything possible to get Lindsey what she needed.
“I have never declined a single service,” she said. “We have opened our home six days a week to interventionists in our home.”
Desilets said she told the people at Carelon that without the residential placement Sideris had requested, her daughter was going to be placed in foster care, because the parents could not pick her up from the hospital. At that point, she said, the child had been ending up in the hospital every third day for a period of weeks.
“It wasn’t good for the kid to keep going back to the hospital in this constant state of crisis. It wasn’t healthy for the family. The family was going to be forced to just put their feet down and say, ‘No,’” she said.
But Carelon, she said, wasn’t willing to reconsider.
Sideris told CT Examiner that since the night in April when she refused to pick her daughter up from the hospital, Lindsey had been placed in five separate foster care homes, not counting several respite homes in between. Sideris said Lindsey had been disruptive in one of the homes. At another home, she said, the foster mother had to call the police.
Right now, Sideris said, she is deciding whether to commit Lindsey to DCF — a decision that won’t terminate her parental rights, but will give DCF the responsibility for certain parts of her daughter’s life, like educational decisions. The alternative, she said, is to go back to Carelon, with no guarantee that Lindsey will get the services Sideris says she needs.
“We have to roll the dice,” she said.
This story has been updated and clarified with new information about the current situation of Sideris’ daughter