This commentary is by Dr. David McKay, a retired physician from Middlebury and past president of both the Vermont Medical Society and the Vermont Psychiatric Association. He is now the sole caregiver for his 28-year-old daughter.
As a lifelong Vermonter, I am proud of our state’s history of leadership in recognizing and supporting the needs of our most vulnerable citizens. Vermont and her leaders deserve enormous credit for their work on behalf of those remarkable individuals living in our midst whose personal challenges have made it difficult for them to express their own needs and wants, or to advocate for a place of their own in a community which understands and respects them for who they are and for what they have to offer us as a caring and inclusive society.
As the aging parent of an adult facing some challenging disabilities, I have been deeply grateful for the agencies and individuals who have scratched together the resources to provide for her specific support needs, allowing her to benefit from and contribute to a truly inclusive community.
Since she graduated from the American School for the Deaf and returned here to her native state of Vermont, she has received exceptional support through Northwest Counseling and Support Services in St. Albans, one of Vermont’s Designated Agencies providing services to individuals with developmental disabilities. I am immensely impressed by the people who have made it their mission to create a real home and a genuine community for her and for so many other vulnerable Vermont citizens who might otherwise face dehumanizing isolation and neglect.
That said, the Covid pandemic has brought new clarity and attention to some serious social and cultural inequities here in Vermont. Among these, adequate and appropriate housing for disadvantaged Vermonters has become the focus for a number of important efforts by legislators, agencies and advocacy groups.
There is now a vibrant movement to develop and provide safe and affordable housing options for citizens facing homelessness, displacement, physical and mental disability, and other hardships. This important work has become part of the mission of several state agencies, legislative committees, advocacy groups, and concerned individuals striving to make Vermont a place where all residents can enjoy the safety and security of their own home within a caring and supportive community.
Currently there are no options in Vermont for home and community-based services that are appropriate for my daughter’s needs. She is a passionate and engaging young woman who is both profoundly deaf and wheelchair-bound due to cerebral palsy.
Although her understanding of written English and of American Sign Language is excellent, she is unable to hear or to speak or to sign. In order for her to understand and participate effectively in normal everyday social communication, she requires a deaf/signing environment similar to her experience at the American School for the Deaf. There is no such environment available for her in the state of Vermont.
Unfortunately, Vermont has long turned her back on our deaf community. Since the closure of Brattleboro’s Austine School for the Deaf in 2014, deaf Vermonters have become increasingly isolated and culturally limited. Many have left the state to seek more welcoming communities for the deaf elsewhere in our country. Others — especially those with disabilities that leave them subject to the vagaries of public policy — are left stranded among us, hoping for the best.
In my daughter’s case, it has been enormously challenging for Northwest Counseling and Support Services to recruit and retain deaf/signing caregivers for her and for a number of other deaf/signing clients who now face social isolation and cultural neglect due to Vermont’s failure to secure and support its deaf community. Vermont has no options to offer.
And since the closure of the Brandon Training School in 1993, Vermonters with developmental disabilities and high support needs have had no alternative to the “shared living” model, which brings a client with disabilities into the home of a foster care provider supported by the state.
Unfortunately, such placements are typically difficult to recruit, short-lived, and often ill-equipped to provide the level of social and cultural stimulation needed to truly include the client in the community.
For the past three years, Northwest Counseling and Support Services has been unable to attract and engage any appropriate home care provider for my daughter. Since the Covid lockdown two years ago, she has been stranded living in my home, where I function as her sole caregiver (except for some very limited support imposed by Covid restrictions).
Her disabilities make it extremely difficult for her to advocate for her own wants and needs. She absolutely requires the strong support and leadership of her family, her neighbors, her caregivers, her legislative representatives, and of relevant state agencies and advocacy groups to develop and implement home and community-based services that would allow her to thrive in the community, much as she thrived in the deaf/signing environment at the American School for the Deaf.
All Vermonters stand to benefit from the well-being of our neighbors, and from our own participation in providing a safe and welcoming environment for those in need. Our awareness and understanding of the many differences among us — social, cultural, financial, religious, political, and on and on — has improved dramatically since the days of segregation, institutionalization, prejudice and dehumanization.
Tolerance and acceptance of our differences allows us to see ourselves as others see us, and to do unto others as we would have them do unto ourselves. We have learned the crucial importance of treating each other well — not in spite of our differences or because of them, but recognizing and including them, as they contribute to the vitality of our communities. We should want no less for anyone.
While Vermont has much reason to be proud of the work that has been done already, further progress is urgently needed. We as individual Vermont citizens need to stand up and speak out for those vulnerable Vermonters in our midst who have been unable to make themselves heard.
We must all take personal action — with our neighbors, our legislators, our state agencies and advocacy groups — to create and sustain responsive and innovative housing options to include fellow Vermonters less fortunate than ourselves.
