To the Editor:
Vermont is a glorious place to live for so many reasons but if you, like me, are the parent of an adult child with significant cognitive disabilities, Vermont can be a scary place to call home.
Not because Vermonters aren’t unfailingly kind to my son, who has a particularly challenging form of Down Syndrome and so will need lifelong supervision. It’s a scary place to live because once I am no longer able to care for my son, he will likely end up in Vermont’s adult foster care system, which Vermont calls shared living.
The prospect of my open-hearted, vulnerable child spending his adult years as a guest in the homes of a series of strangers is deeply disturbing.
It doesn’t have to be like this.
Vermont, in its well-intentioned efforts to move beyond the failures of institutionalization of people with intellectual disabilities, has thrown the baby out with the bath water with its bias against congregate housing for people like my son. Congregate housing — think college dorms or assisted living or even three adjacent apartments or small homes — is a common and cost-effective way to provide housing and community for groups of people with similar needs.
Vermont’s Shared Living program, while a significant improvement from the past, still leaves parents in my position profoundly unsettled about their adult child’s future wellbeing.
Once my husband and I understood that adult foster care would likely be our son’s fate when we were gone, we zealously began advocating for Vermont to consider developing the kind of vital congregate communities for adults with intellectual disabilities that exist in other states.
We were busy parents and did our best, but nothing seemed to change. When my husband was diagnosed with a terminal brain tumor, our hardest conversations prior to his death were about what would happen to our son, should the unexpected happen to me, the way it happened to his father.
I raise this issue now with some urgency because Vermont is about to become the recipient of about $162 million, courtesy of the American Rescue Plan Act, which will provide Vermont with unprecedented one-time federal funding specifically designated to better serve Vermonters with disabilities.
This windfall is a once in a lifetime opportunity to develop a few small, stable and stimulating residential communities that can provide my son, and other Vermonters like him, with a place to live and friends to live with, long after we are gone. My concern is that instead of using this windfall to implement the kind of enlightened change that Vermont is famous for, it will be used to shore up the existing ways of doing things —like adult foster care.
We can, and should, do better.