This commentary is by Laurie Mumley, a resident of Shelburne.
Sometimes, we just don’t know what we don’t know. I graduated from UVM back in ‘87. I worked for the Vermont Agency of Human Services for over 30 years. I had always heard (and believed) that Vermont was “a leader” in creating innovative human services programs to serve our neediest populations. In some cases, perhaps we are.
What I did not know is that we are clearly failing our most vulnerable population — adults with developmental disabilities and high support needs.
My son, now 19, is autistic. He is functionally nonverbal with high support needs. He requires 24/7 care. He receives the Home and Community Based Services waiver.
As an aging single mom of two, caring for him 24/7 with minimal support has been exhausting. The extent of his care needs has had a negative impact on my own health, his younger sister’s well-being, and is unsustainable.
Currently, the only available housing option for him (and for others like him) is the “Shared Living” model, which is essentially adult foster care. This model will never work for my son. His needs and behaviors cannot be successfully managed by one or two strangers. There is not enough oversight to make this a safe option for anyone with limited or nonexistent communication skills.
He thrives on consistency, routine and stability. In Shared Living, he would have to move to a different house and community every time the shared living providers decide that they want a different job, their circumstances change (new relationships, children, etc.).
He needs — and deserves — to have stability/consistency of place. He needs — and deserves — some reasonable choice in where and how he lives. My parents, for instance, can choose to live independently (perhaps with some assistance), or in a retirement community, or a nursing home. My daughter will someday be able to choose between living independently, living with some friends or perhaps her partner, living in a dorm, etc. It is not unreasonable to have some level of choice.
This is where Vermont has fallen behind the rest of the country. Most states have a range of housing options for adults with developmental disabilities. There are dozens of successful housing models out there already; Vermont doesn’t need to reinvent the wheel.
Now is the time to finally fulfill the promises made when the state deinstitutionalized services nearly 30 years ago. The promises included a range of community programs and options, many of which have yet to materialize.
Vermont will soon be receiving about $162 million, courtesy of the American Rescue Plan. This will provide one-time federal funding specifically designated to better serve Vermonters with developmental disabilities.
Last year, I joined a statewide group of about 80 parents in the Developmental Disabilities Housing Initiative. Our goal is to have Vermont set aside some of this money to develop housing options for Vermont adults with developmental disabilities who receive the Home and Community Based Services waiver, particularly those who have higher support needs. There are no viable housing options for this group.
My son began a residential program in New Hampshire just four days ago because there is no place in Vermont that can meet his needs. This is heartbreaking, all too common, and completely unacceptable.
The Vermont House Committee on Human Services has been hearing testimony about this topic over the past month from members of our group, and from others.
In late February, the committee voted YES to the “act relating to the system of care for individuals with developmental disabilities” (22-0586). Obviously, it needs to pass through the House Appropriations Committee and then get through the Senate.
We desperately need your help and support to make Vermont a safe and supportive community for ALL Vermonters. This bill needs to pass. It is long overdue.
As Mahatma Gandhi famously said, “The true measure of any society can be found in how it treats its most vulnerable members.” Vermont, you can do better.
