Tom Dwyer's message to the President's Committee for People with Intellectual Disabilities

Hugo Dwyer is the Executive Director of VOR, a "Voice Of Reason speaking out  for people with intellectual and developmental disabilities". He traveled to Washington, D.C. in November to deliver a birthday message about his brother Tom, a resident of Southbury Training School in Connecticut, an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID). This appeared in the Winter 2018 edition of the VOR Voice.

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Executive Director’s Message: Tom Dwyer Speaks to The President 

My brother Tom turned 62 on November 8th of this year. He lives at the Southbury Training School, a state-operated ICF in Connecticut. STS has been Tom's home for his entire adult life, and I can honestly say that I don't believe Tom would be alive today without the quality care, love, and community that STS has given him.

Tom probably doesn’t know what a birthday is. He is severely developmentally disabled. Tom has autism, bi-polar disorder, Pica, Parkinsonism, and what was once called profound mental retardation. He has one detached retina and his vision is poor. He uses a wheelchair but he can be walked with a gait belt. And Tom is non-verbal.

I did not go to Connecticut to bring him his birthday present that day. Instead, I took a train down to Washington, D. C. to give him his gift. I went to Washington, D. C. to give Tom a voice.

I attended a meeting of the President’s Committee for People with Intellectual Disabilities (PCPID), hosted by the Administration for Community Living (ACL). I addressed the committee on behalf of Tom and on behalf of all of our loved ones with severe/profound intellectual and developmental disabilities. My voice, Tom’s voice, your voice, was the only voice that spoke on behalf of the most severely impacted members of the I/DD Community.

No one told me that the public wasn’t allowed to address the Committee at this meeting. Fortunately, no one had told the first speaker that either. When the Liaison from the Office of Health and Human Services to the Office of the President finished his opening remarks, centered around the committee’s intent to speak about Competitive Integrated Employment, he asked if there were any questions. I put up my hand, and not knowing any better, he picked me.

I introduced myself to the committee, and told them about Tom, that it was his birthday and I was there to speak for him, and for our VOR families with loved ones who need and want services in Intermediate Care Facilities (ICFs). I told them that our families have been marginalized and overlooked for decades, our preferred services closed down or cut back, that admissions to ICF’s have been closed in many states, including at STS. I told them that we were being denied our right to choice, and that as parents and siblings and guardians, we had the right to make these choices. I went on to say that many other individuals with intellectual disabilities are being denied the opportunity to work in center-based employment with specialized wages. The choice of sheltered work environments is being denied by people who see this as detrimental to the wishes of those who seek competitive employment. I told them that our voices have not been heard in their meetings, and that I was there in hopes that the more severely intellectually disabled populations would have a seat at the table at the President’s Committee for People with Intellectual Disabilities.

After I spoke, the committee announced that members of the public were not to be granted the opportunity to speak at this meeting. Except for two women who had been hired as ASL interpreters if needed, I was the only person attending as a member of the public. But I stayed and watched and introduced myself to individual members when on breaks. I made sure the members of the committee were very aware of who I was and who I was there to represent.

The President’s Committee appears to have already set their agenda. It will focus on the less severely impacted members of the community, their hopes for inclusion, for integrated competitive employment, even for attending college. These are all noble, admirable goals. We all want all of these things for all of these individuals and their families. Inclusion is fine, but we want our loved ones to be included, too. A report to the President of the United States about the community of people with intellectual disabilities is not complete if it excludes the most severely intellectually disabled.

I hope that the Committee did hear Tom’s voice that day, and that they will see fit to invite our families to be part of their discussions next year. And I hope that maybe someday, Tom’s voice will be heard by the President himself. Or herself, if it takes that long.

Hugo Dwyer

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See also, 

"Disability Housing: Institutional Avoidance" by Micaela Connery, The Huffington Post, 12/6/17: "Institutions aren’t a failure of the past, they’re a reality of the present."

Southbury Home and School Association