This commentary is by Elizabeth Campbell, a psychoanalyst from Shelburne, and 40 other Vermont parents seeking changes in Vermont’s housing options for their adult children with significant developmental disabilities.
Vermont is a glorious place to live — but if you are the parent of an adult who will never be capable of living independently due to their lifelong developmental disability, Vermont can be a scary place to call home.
It’s scary because the way things are now, once these families are no longer able to care for their adult sons and daughters, they will likely end up in Vermont’s adult foster care system, called “Shared Living.”
Shared Living works well for some people with developmental disabilities but for others, Shared Living — where they have no choice but to spend their adult years as a guest in the homes of a series of strangers — is chronically destabilizing for them and deeply disturbing to their aging parents.
It doesn’t have to be like this. Vermont’s well-intentioned efforts to move beyond the institutionalization of people with developmental disabilities have inadvertently stifled the development of housing options that address the range of needs found in our developmental disability community.
Especially for adult Vermonters whose developmental disabilities require a steady and consistent home environment (a developmental disability is defined as a significant sub-average intellectual disability or autism spectrum disorder that results in significant deficits in adaptive behavior that manifested before age 18), the state’s bias against residential peer communities for people with developmental disabilities has impeded the development of the kinds of stable communities we routinely provide for our kids and aging parents — think college dorms or assisted living.
The 40 people behind this letter are a group of older parents of adults with developmental disabilities and are raising this issue with some urgency because Vermont is the recipient of $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 whose disabilities qualify them for home and community-based services (which, in addition to including adults with developmental disabilities, includes adults in Vermont’s Choices for Care and Traumatic Brain Injury programs).
This is a once-in-a-lifetime opportunity to develop a few small, stable and stimulating residential peer communities that can provide these lifelong vulnerable adults with a steady, consistent place to live and friends to live with, long after their parents are gone.
Editor’s note: The 40 parents are from Barre, Brattleboro, Burlington, Charlotte, Chelsea, Colchester, Dummerston, Enosburg Falls, Essex, Jeffersonville, Jericho, Middlebury, Richmond, Ripton, Shelburne, South Burlington, Stannard, Waitsfield, Williston and Winooski.
