This is the final article in a four-part series on the challenges that young people with special needs face as they transition from school into adulthood. To read the first part, click here. To read the second part, click here. To read the third, click here.
Every weekend, either Celeste Brouillard or her husband drives four hours south to visit their 20-year-old son, Matthew, at a residential school in New Jersey.
“It was literally our only option, and it was killing me. But it was also — we had to work and we couldn’t get any help,” Brouillard told CT Examiner.
It’s the third residential school that Matthew, who is severely autistic, has lived at, each of them in a different state.
None were in Connecticut.
Parents whose children have complex needs that can’t be met by school districts and day programs have found themselves stymied by the lack of residential schools in the state. For some, like Brouillard, it means sending their child to a facility hours away.
Matthew was outplaced from his school district in 3rd grade, Brouillard said. He stayed in a day program in Connecticut for a few years, until they couldn’t support his needs any longer. Brouillard said he “bounced around from program to program,” with stints at the Hospital for Special Care in New Britain. Then, they found the New England Center for Children in Massachusetts.
“They put him in the intensive treatment team. Whipped him kind of into shape,” she said.
Kim Ruscitti, associate director of communications for NECC, told CT Examiner that the school does receive referrals from Connecticut, typically when families have gone through all the options available in their state, or when their state simply doesn’t have any adequate facilities.
“The truth is, there are not enough residential programs to help the number of children with autism who need it – in Massachusetts, Connecticut, or anywhere,” Ruscitti wrote.
Then, COVID hit.
According to Brouillard, her son regressed during the pandemic, and the Center for Children began to have staffing challenges. She said her school district wanted Matthew to have more transition services as he got closer to the age when he would have to move to adult services.
Ruscitti said that many children regressed during the pandemic because of the constraints that distance learning and mask mandates created, and she said that while staffing challenges existed at many organizations during COVID, the school “never compromised on the safety and well-being of our students during that time or since.”
She also said that the school begins transition planning with students at the age of 14, with increasing support as they get closer to aging out.
Brouillard decided to pull Matthew out of the school in Massachusetts and enrolled him in Shrub Oak International School in New York.
An investigation by ProPublica published in May found accusations of possible abuse and neglect of students taking place at the school, which received no oversight from the State of New York. Brouillard said that in the five months that Matthew was at Shrub Oak, he came home with injuries.
According to Brouillard, in the first two months that Matthew was at the school, he lost 14 pounds. Most of her son’s belongings, she said, including pillows and comforters she’d sent from home, went missing. When she visited, she discovered that he had a black eye, and was told by a staff member that this wasn’t the first one. She brought him to Connecticut Children’s Hospital, where his injuries were documented.
Mary Lavan, director of communications and outreach at Shrub Oak, told CT Examiner in an email that while they could not comment on individual cases, “the safety and well-being of our students are our highest priorities.”
“It is important to note that Shrub Oak serves a highly complex population of students with autism spectrum disorder, many of whom present with significant behavioral challenges, including self-injurious behaviors and other actions that may place them at risk. We strive to create a supportive, structured environment that meets their unique needs while fostering growth and independence,” she said.
Brouillard said that after five months, she could no longer stand having Matthew at Shrub Oak. When they tried to bring him back to the school after a weekend at home, she said, her son would beg not to go back.
“I just couldn’t sleep at night, and I knew it was probably a very bad decision. But my husband and I had to kind of weigh the pros and the cons, like if we take him home, this is going to be really brutal. And it could be really brutal. But if we keep him there, it could affect him the rest of his life,” she said.
“We’re kind of stuck”
After Shrub Oak, Brouillard and her husband enrolled Matthew in a day program in Connecticut, but she said the care level just wasn’t enough — it was only six hours each day, and Matthew was acting out at night. She said she did try to find someone to spend time with Matthew after he returned from his day program in the afternoons, but that the state Department of Developmental Services would not increase his budget.
Brouillard said Matthew’s budget, set at around $52,000, had not increased since he was eight years old, although she requested an increase.
Department of Developmental Services Director of Communications, Legislation and Regulations Kevin Bronson told CT Examiner in an email that budgets are reviewed annually with a person’s team and case manager. He said that when additional support is needed, people can request a budget increase, which will be “considered for approval based on available funds.”
Adding to the budget challenge, Brouillard said, was the lack of qualified individuals who could take care of Matthew. She said that even if they could find available help, they would probably only get about eight hours per week of respite.
At that point, she said, the only group home they could find that could meet Matthew’s needs and had space available was in Southern New Jersey.
In New Jersey, Brouillard said, Matthew began to have behavioral problems, and she began to fear that the residential facility he was in would discharge him. She said they eventually came up with a system where Matthew would stay at the group home, and go to a day program focused on severe behaviors. It meant abandoning work on academic goals, Brouillard said, but she was okay with that.
“He’s like a different kid now,” she said. “We go down almost every weekend to see him. I think that helps him – [to] see us engage with the staff, and I think he feels comfortable with the staff and he loves the staff,” said Brouillard.
But the program was meant to be temporary, and Brouillard said she started, once again, to look for group homes for Matthew in Connecticut. The ones she found, she said, either told her that they couldn’t take any more clients, or that Matthew’s needs were too high. She broadened her search to Massachusetts.
“We’re kind of stuck, because our services are pretty much non-existent in the state of Connecticut,” said Brouillard.
For now, Brouillard’s son remains in New Jersey, although the day program says that they are unable to meet his needs, according to a letter shared with CT Examiner. The program began recommending discharge in April. So far, they have had to extend it through December.
She said she tried to get Matthew on the emergency list for a residential placement, but was denied by DDS. They are now filing an appeal.
Bronson said in an email that DDS does work on planning for young people as they reach the age of 22 and leave the school system.
“For individuals who have been residentially placed during that time, DDS plans for continued residential support and actively seeks appropriate placements and transition plans prior to the end of their school engagement,” Bronson said.
He also said that the department is expanding its residential options “to include assistive technology and remote supports to make it easier for an individual to remain in their own home or family home, as appropriate.” He said they are expanding supportive housing programs, step down units for people in crisis, emergency housing for people at risk of being homeless and places for people in need of emergency residential support.
Brouillard said that her case manager told her that residential placements had mainly been eliminated because of the desire to have people remain in their homes.
“And I said, ‘That’s a wonderful plan.’ I said, ‘But when you get to the level of need like a Matthew … it’s not safe, and you can’t find help because you don’t pay them.”
A decades-long wait
Multiple parents told CT Examiner that placements in residential facilities in Connecticut were few and far between. Dawn Dematteo, a parent and advocate for families with disabled children, said that while she loves the facility her son lives in, she had to advocate for five years before she was able to get him in.
“It’s all stemming from the funding from the state of Connecticut to the non-profits. And then what’s happening now within the non-profits is, there’s a staffing shortage. So even if there’s an opening in a residential place or a day program, they’re short-staffed,” she explained.
Data from the Department of Developmental Services shows that a total of 578 people are on waitlists for residential placement, with 58 being classified as having an “emergency” need, and the rest classified as having “urgent” need. These people are currently receiving no services.
The problems aren’t just in residential — day programs are also often subject to long waitlists. According to data from the state, 61 people are also waiting on employment opportunities and day programs as of March 2024 because of a lack of available funding.
Karen Helene, the executive director at Benhaven, a private nonprofit school and career transition program for young people with autism and developmental disabilities, said that getting a young person into a residential facility could be a decades-long wait.
“Lisa and I had a student in the very early days of our teaching careers at Benhaven, who her parents ended up getting into their 80s before she was able to be placed residentially,” said Helene.
She said that as parents age, this becomes a safety concern, since many times their children need intensive care that is difficult for an elderly person to provide.
State Rep. Jay Case, R-Winchester, told CT Examiner that a law passed in 2023 included $15 million — $5 million for each of the state’s three regions — to compensate nonprofits that provide supportive housing for people with disabilities. The agencies can use the money to build new housing, with the goal of shrinking the waitlist.
“We’d rather have the group home style of six clients or more, not the massive, institutionalized [homes] that we used to have,” said Case. “It makes it more economical, it makes it more homey, and it makes it a lifestyle that somebody would want to live.”
But those facilities will not help young adults like Brouillard’s son.
“We have a tidal wave coming”
The number of children and young people diagnosed with autism has been on the rise over the last 20 years. According to data from the U.S. Center for Disease Control, the number of children diagnosed with autism has gone from 1 in 68 children in 2010 to 1 in 36 children in 2020.
Data from the state of Connecticut also shows growth in the population of children diagnosed with autism. As of last year, there were about 11,800 children with autism in the school system, making up 2.4 percent of all children in Connecticut schools and 14.3 percent of all children receiving special education services.
A 2023 study conducted by the Center for Disease Control found that in a 15-year study of about 20,000 children diagnosed with autism, about a quarter of those children were considered “profoundly autistic” – having an IQ of below 50 or non-verbal.
Nicole Milo, whose son falls within that category, said that the high prevalence of autism meant that a large population of autistic children were going to age out of the school system and have to find services.
“We have a tidal wave coming over the next 20 years, of that spike that we’ve never seen before,” said Milo.
Darlene Borre, whose 23-year-old son is profoundly autistic and has an intellectual disability, agreed. Borre said that her son had done well in the special autism school that he attended, but when he applied to various day programs, they refused to take him, saying that his need level was too high.
“You have this group of kids who were born in the late 1990s and early 2000s who have now graduated to an adult world that is completely not ready for them, and has never dealt with a population like this before,” Borre said.
Parents like Borre and Milo, faced with the lack of options for their child, try to create their own. Borre said that the Department of Developmental Services connected her with a for-profit company that was willing to work with her son. She spent a summer training the person to work with her son’s specific needs — he is non-verbal and uses an iPad for basic communication. Two people who used to work with her son as paraeducators in his school also agreed to work with the family.
Borre said that if she didn’t have those connections from when her son was in school, she wouldn’t be able to continue working.
“The people that have a son like mine who turns 22 in Connecticut — you pretty much have to quit your job, because you’re not going to find an agency that’s willing to work with them for that many hours and allow you to work,” she said. “So now you have the [young] person unemployed, and their parent unemployed.”
Borre said she’s not looking for a residential placement for her son, who does not have behavioral issues. But she said she’s worried about the future.
“What always concerns me is, this works great as long as I’m alive. But what happens after that?”
A “Catch-22”
Milo said the process of finding an adequate place for her son Caleb cost her everything.
“My hair fell out. It was extremely traumatic. We had to stay, I think, about 10 days in the emergency room. I refused to leave, and I was in a little tiny room in the emergency room with a five-year-old,” she said.
Caleb started out with Birth to Three services, and then started at the River Street program, a public program run through the Capitol Region Education. But Milo said his behaviors were too extreme for the program — he was aggressive, hitting his head or hurting himself in other ways, threw objects, and his communication skills had regressed, according to documentation — and she felt he was not making enough progress.
Caleb ended up spending six months at a children’s psychiatric hospital in Middletown until they were able to find an appropriate residential placement.
That meant going out of state.
Eventually, they found a spot at Melmark New England, a school three hours away in Massachusetts, where she said he got excellent services. He started communicating better, was learning household tasks and they were able to reduce his medication. Milo said that his self-injurious behavior also lessens when he’s able to succeed at tasks.
“I think a lot of times people are so intimidated by these behaviors that they just think, ‘Well, these kids are never going to progress.’ And that was really what I was told. ‘Your son is uneducable. He’s not going to be able to make progress. You’re just going to have to live with the fact that he’s probably going to have to be institutionalized for the rest of his life.’ And I just didn’t accept that,” said Milo.
Caleb is now 21 years old. He is doing vocational training, both in food retail and on a farm, Milo said. But Massachusetts state law says that he cannot remain at the school past his 22nd birthday.
Three years ago, Milo and her family invested in a house across the street from her, which they remodeled for her son. The house became the catalyst for her non-profit, House of Hope. Milo told CT Examiner that her dream is to offer nursing support, day programming, vocational support and respite for families of young people with autism and intellectual disabilities.
“My son will end up in an institution out of state if I don’t do this, so I’ve had no choice,” she said.
According to Milo, a successful program for young people with behavioral issues and autism or intellectual disabilities requires a higher level of training, with BCBAs on staff who can de-escalate difficult behaviors. She said that an agency that works with these young people needs to be able to manage both difficult behaviors and long periods of stability.
“The stability comes from the efforts and the consistency of the properly trained staff… and I think that [the Department of Developmental Services] in general does not understand this particular profile of individuals that look like my son,” she said, adding that she felt that parents had been left out of the conversation.
Milo said it’s also a “misconception” that there can only be that level of staffing and care available in institutions.
“Why can’t we have that in a natural environment?” she asked.
Milo told CT Examiner in an email that House of Hope was now preparing to provide day services for individuals with autism and Intellectual Disabilities. She said she wanted to purchase a multi-use property called Hope Farms, which would become a life-skills center where they can “work on meaningful employment and vocational skills” tailored to each student’s strengths and needs. She also imagines hosting events and selling items that students made through their training.
She said they are now in the process of hiring staff and training them, as well as raising funds for the life skills center. She plans to transition Caleb into the program next spring.
Milo said she also wants to provide counseling for families whose children are aging out of the school system, who she said are “in complete and total crisis mode” and have struggled to get services for their child.
“We talk about de-institutionalization and getting these individuals out in our communities. The problem is, they don’t have the staffing, so families are isolated inside their homes — and then to have constant staff in and out of your home is also so disruptive,” she said. “So it seems like they’re in a constant state of catch-22, or it’s like no matter which way they go, they’re stuck.”