How a Vermont family is fighting to help developmentally disabled kids

ESSEX, Vt. (WCAX) - It’s a dilemma involving Vermont’s services for developmentally disabled kids, a state system some argue is inadequate and outdated, and a legal precedent officials say protects vulnerable children.

For three decades, the state of Vermont has prioritized deinstitutionalizing care for vulnerable populations regardless of the severity of their disability.

But what can families do when harmful behaviors escalate and their child is too challenging to control?

A curious and charismatic Essex boy is inspiring his parents to fight for a better future.

Music is a reliable remedy to ease Henry’s restless mind. The therapy sessions are a weekly high note.

The 10-year-old marches to the beat of his own drum, sweet and spunky. But if Henry gets in even the smallest of jams, he can quickly change his tune.

“He has many forms of developmental disabilities, including intellectual disability, autism, ADHD, obviously the seizures-- they affect his motor skills, his communication skills, all of his skills, and they do cause regression,” Leslie Langevin said.

Henry’s screams and cries often fill the halls of the Langevin household. But it’s his frequent and dangerous meltdowns that are so difficult for his mom Leslie, dad Eric and 8-year-old younger brother Zach to manage.

“Really it’s just the straight-out exhaustion. Henry is staffed two-on-one because he is physically so big. I mean, he’s 100 pounds and he’s kind of a bull, so we can’t say ‘no,’ we can’t say ‘stop.’ We’re always engaging and keeping him personally safe,” Leslie said. “And then sometimes he can be aggressive, so it’s keeping Zach safe and protecting our property. You’re hypervigilant every step of the day. Almost every single night, Henry gets up three to five times, whether it’s you’re helping him with seizures or he might be trying to hit his head on his wall if he has a headache.”

Eric Langevin: He can overpower me now, and that’s scary.

Leslie Langevin: I know, he can push me down.

Zach Langevin: He’s getting bigger and stronger and taller.

Henry has suffered several life-threatening seizures and feels chronic pain.

The family of four has relied on state resources and nearly full-time personal caregivers since Henry was 5. The Langevins say the small doses of respite aren’t enough to cure the chaos they endure daily.

Reporter Christina Guessferd: What does Henry mean to you?

Zach Langevin: Well, I love him. And, I mean, he’s a little...

Christina Guessferd: It’s tough.

Zach Langevin: Yeah... I talk to my therapist every week.

“It wasn’t until last fall that we kind of had reached this boiling point of, ‘Oh, my God, we need help,’” Leslie said.

The Langevins explored shared living providers for children with both developmental disabilities and medical complexities. They soon learned Vermont doesn’t have one. The closest locations are hundreds of miles from their Essex home.

“He’s part of our family. He’s our first-born child. The thought of sending him away is gut-wrenching,” Eric said.

So when that seemed like the Langevins’ only option, they decided to forge another path.

“It really just came to me, and I was like, I’m going to build a therapeutic community residence in Vermont,” Leslie said.

“Two-story, three-bedroom home,” Zach said.

The now-nonprofit is called Building Hope for Children. The proposal-- a local, modern farmhouse with sensory rooms, an accessible playground, a chef’s kitchen and dining space, and a studio apartment for a 24/7 nurse.

The program would provide on-site services including physical and occupational therapy, field trips and outdoor activities, plus psychiatric consultations and individual counseling.

The cost is comparable to similar out-of-state programs at between $225,000 and $250,000 per child.

The most important principle-- an open-door policy for families and friends.

Through donations and grants, the Langevins are fundraising for $1.75 million. The goal is to break ground next year.

“The house is going to be beautiful. It’s going to be like Disneyland,” Leslie said. “I wouldn’t put my kid in anything less than that.”

But for all its magical properties, the project could turn out to be just a fairy tale.

On this journey, the Langevins will have to jump over significant hurdles to make the group home happen.

A Vermont law established three decades ago in response to the state’s shadowed past could put those plans in jeopardy.

Friday, on the Channel 3 News at 6 p.m., why officials say as the proposal stands it is not allowed.

Related Story:

How a Vermont family is fighting to help developmentally disabled kids - Pt. 2

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