How a Vermont family is fighting to help developmentally disabled kids - Pt. 2
ESSEX, Vt. (WCAX) - A Chittenden County family is helping spearhead an effort to expand in-state treatment options for children with developmental disabilities, but as Christina Guessferd found in the second part of her special report, navigating the bureaucracy could be a steep challenge.
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, their child is too challenging to control, and at-home services aren’t enough? The short answer is to send them to a residential facility out of state.
Inspired by their own experience with their son Henry, who has multiple developmental disabilities and medical conditions, which stems from a rare genetic mutation, Leslie and Eric Langevin have established the nonprofit Building Hope for Children. The concept is to create a new two-story group home that would house three children at a time who would receive around-the-clock, one-on-one care.
“So I can make a home that is staffed with nursing care. Children like henry deserve nursing care,” Leslie said. “Families can have respite and survive while knowing their kids are in a good place, too.”
Through donations and grants, the Langevins are fundraising for $1.75 million, with the goal to break ground next year. But the gears of government move slowly and the project requires approval from several state departments including the Department of Disabilities, Aging, and Independent Living; the Department of Mental Health, the Department for Children and Families; and the Department of Vermont Health Access.
Until the end of the 20th century, society segregated developmentally disabled people, hiding them behind brick walls. Vermont’s current policies were established in response to the state’s shadowed past and are now rooted in respect and dignity for those who’ve historically been dehumanized. And it’s those policies that could put the Langevins’ plans in jeopardy
Some former residents of the Brandon Training School remember their experience there fondly while many others reflect on the flaws. Founded as the Vermont State School for Feebleminded Children in 1915, the public institution once housed more than 600 people and served a total of more than 1,300 men, women, and children. The school’s closure in 1993 was proof of a paradigm shift in that philosophy.
In 1996 Vermont lawmakers passed landmark legislation. Now, three decades after the Development Disabilities Act became law, officials firmly argue that institutionalization is an archaic and detrimental approach. Department of Disabilities, Aging, and Independent Living Commissioner Monica White says community-based care was one of the primary lessons learned. “Persons with developmental disabilities or any disability are a valued and critical part to the heart of Vermont’s communities,” she said.
White says because of the law, Vermont now offers a variety of in-home family supports and community services for children. “The menu is large and it’s tailored to the needs of each individual child and family, and by and large, that has been extraordinarily successful over the past three decades.”
By codifying inclusion and integration, institutions for children are forbidden. The provision reads, in part: “Children, regardless of the severity of their disability, need families and enduring relationships with adults in a nurturing home environment. The quality of life of children with developmental disabilities, their families, and communities is enhanced by caring for children within their own homes.”
White says she can’t disclose exactly how many children currently receive out-of-state residential care but the number is less than 11. “Those out-of-state placements that do happen are typically very targetted, very short in duration. For longer-term stabilization in the community -- back here in Vermont,” she said.
So does the Langevins’ proposal deviate from that law? “A facility such as that does not sound like it would be in alignment with Vermont’s current principles for developmental services,” White said. But she notes that the department hasn’t yet received a formal proposal to officially make that determination.
“It would have to be an exception to the normal rule,” said former DCF Commissioner Ken Schatz. But it’s an exception, he says, that must be made. During his 6-year tenure, Schatz facilitated some of those out-of-state placements, which often involved kids in abusive situations because their parents struggle to care for them.
Reporter Christina Guessferd: As a former state official, can you confidently say this is a significant and serious gap in the state’s system?
Ken Schatz: I believe it is.
Compelled by the Langevins’ story, Schatz has joined the Building Hope for Children board of directors. He agrees the state should prioritize home and community-based services but that there are exceptions. “There are a tiny number of children like Henry who really require more,” he said. Schatz says the nonprofit’s concept illustrates the stark differences between the prison-like Brandon Training School and the Langevins’ ambitious vision.
If the state doesn’t authorize the project, social worker and state Rep. Tanya Vyhovsky, D-Essex, vows to advocate at the Statehouse during the upcoming legislative session to turn their plans into a reality. “Every one of those child’s lives matter, and even if it’s three children that would otherwise be out of state, those three children deserve to be in their home state surrounded by people that love them,” she said. “A lot of times we get really stuck, sort of stuck in, ‘This is the policy, this is the way it is,’ without thinking about, ‘Well, why is it that way, and are there ways we need to change it to better meet the needs of people?’ There is not a one size fits all solution.”
The Langevins are leading that charge to change the state’s system. “I hope for families like us that I can provide a service and a model that Vermont could take on,” Leslie said.
The Legislature this past session approved Act 186. It creates the position of a Residential Program Developer, who’s responsible for expanding housing and residential services options. The law also creates a pilot program that will award grants to three entities planning to build congregate housing for individuals with developmental disabilities. Anyone can submit a proposal, including the Langevins. But DAIL Commissioner White says she believes the legislation is intended for adult care, not children. Still, the language in the law doesn’t specify, so the parameters are up for interpretation.
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