Ava, 13, loves rainbows, cartoons and her dog Cassius.
“I like the lion because it has a rainbow and I like rainbow,” she said, pointing to a painting she’d made.
But a huge hole on a broken door to her room hints at the traumatic reality for Ava and her family.
Caregivers, like Shannon Burke, haven’t stayed long. When Ava broke a mirror one day, “she did end up taking one of the pieces of glass and chasing me around the house with it,” Burke said.
Ava’s “pulled the hair out of my scalp to the point where I’m bleeding because she wanted to leave the spoon inside of the microwave and I had to explain to her that she couldn’t do it,” said Ava’s sister Sophia.
Single mom Nancy Camp, who adopted Ava as a baby, said she was diagnosed with autism as a toddler and then with an intellectual disability.
Camp, of Stamford, is struggling to get her daughter the care she needs to survive, and perhaps even thrive. Camp says Ava is not safe at home. A hospital says she can’t stay there forever. And alternate schools say she’s too aggressive to be enrolled.
Kids with autism and other disabilities are falling through the gaps in Connecticut schools, civil rights attorneys say. In severe cases, they’re removed from traditional public schools and then from district-funded special education programs. What happens next is uncertain.
For Ava, things came to a head last fall when she wanted another dog. Camp said no. The teen — nearly six-feet-tall — had a meltdown so bad that Camp called the police.
It’s not the first time she’s turned to them for help.
“And they usually have to dose her right there because she’s so aggressive,” Camp said. “I mean, they have to sadly tie her hands down, tie her legs down.”
Ava ended up at Stamford Hospital, and then Solnit, a pediatric psychiatric hospital run by the Department of Children and Families (DCF) for children under the age of 18, with severe mental illness.
Camp said her private insurance paid for treatment and she said after about two weeks, Solnit told her that Ava was going to be discharged. Camp refused to pick her up; she didn’t feel it was safe.
The facility eventually cared for Ava for about five months.
Transitions like these are tough for children on the autism spectrum, said Dr. Pamela Hoffman, a psychiatrist at the Yale Child Study Center.
“I had a patient in my emergency room who was unfortunately stuck in the ER for almost a month, while the discussion was going on with the school, with the family, with the state, on how do we get the child into the appropriate level of care that they need,” she said. “And it would be wonderful if that planning is done in the time that the child needs it.”
Advocates like Marisa Halm, attorney and director of the Youth Justice Project at the Center for Children’s Advocacy, say there are hundreds of kids in Connecticut pushed out from what’s called approved private special education schools.
“The vast majority of these children are children of color, and children with disabilities," Halm said.
Children like Ava, who is Black.
Ava’s case is not unique, said Michael Williams, deputy commissioner of operations at DCF.
“This case is one of many with the similar fact patterns that we see on a daily basis,” he said. “The challenge becomes when they get better, what’s next? And as a system we struggle and we grapple with that. They can’t live in an institution.”
Camp alleged that after those five months, Ava was sent home without a plan from Solnit or the Stamford school district. The alternate school she’d been in, which the district paid for, disenrolled her when Ava was attending a DCF-run school inside Solnit.
Camp believes Ava could have avoided all of it — the hospitalization, the gap in her schooling — had the district paid for a residential therapeutic school with structured daily routines for children with autism. Ava was accepted by two schools last year, Camp said, but the district would not pay.
In order to talk about Ava’s case, the Stamford school system required a waiver from Camp, obtained and sent by Connecticut Public. The district has not responded to specific questions about Ava.
But Michael Fernandes, associate superintendent for Intervention and Student Support at Stamford Public Schools, said in a statement: “There is no legal requirement that a student with a disability be placed in the program favored by the student’s family, only that the student be placed in a program that meets their educational needs as outlined in their individualized education plan and as determined by the Planning and Placement Team (PPT).”
Camp said a PPT was not held when Ava was at Solnit.
Connecticut Public first contacted the district in February to find out its plans for Ava. In March, Camp said the district offered to send Ava to a therapeutic residential program at a facility called Adelbrook — she said it’s the first ever residential school Ava will be attending.
Camp emphasized that the delay in getting her there is a huge setback to Ava.
Civil rights attorneys like Ava’s lawyer, Piper Paul, say there are hundreds of children struggling through the system.
Paul represented Daniel Portillo, 14, who was suspended from the Norwalk Alternative Opportunities Program in the middle of the day for breaking a bathroom rule — no more than one student was allowed at a time. Daniel was there first, he said, and he took a video of the alleged verbal abuse by staff.
“Take your crap at home. Oh my god. Both of you go home,” a staff member is heard saying.
The school districts are reimbursed by the state for sending children like Ava and Daniel to approved private special education programs, Paul said. But the programs lack transparency, Halm added.
“The concerns Ava’s case raises about these schools are very valid, which is one of the reasons we’ve been pushing the state to do some sort of report that can provide a picture of who are those students in these schools?” Halm said. “What is the performance level in these schools? What is the suspension rate? What is the graduation rate?”
Back at her home, Camp knows that things can change in a blink.
“Her zero to 60, as I tell everybody, is deadly,” she said. “Her zero to 60 is deadly.”
And Paul, Ava’s attorney, says Adelbrook may well be yet another series of transitions.
“In Ava’s case, they’re saying that once her behaviors are more stable, she will be returned back into the community,” she said.
Ava looks at messages on a white board reminding her to stay calm. She’s waiting to go back to school, and misses “my friends, they’re very nice.”
Soon, she’ll have to start over, once again.
