August 28, 2014
When it comes to advocacy work, Dale Hackett of Barre City is a shining star. That’s why he was honored by the Vermont Center for Independent Living at its ADA Celebration on July 24, receiving an Advocacy Award for his tireless work at the State House and vigilance in protecting the rights of Vermonters with disabilities.
The award came as a surprise to the humble and unassuming Hackett.
Hackett is a native Vermonter who spent a lot of time as a child in Hanover, N.H., where he excelled at running and cross country skiing, even making the Olympic “B” cross country skiing team. He has been legally blind since childhood and also has epilepsy, which led to his athletic career being cut short.
Today he is a youthful-looking grandfather with two granddaughters and one grandson. When his three children were little, he found that the system was not very supportive of a father with a disability trying to do the best he could for his kids. That, along with seeing some of his loved ones confront disability issues, seemed to light a fire that would fuel his passion for advocating for people with disabilities.
”I knew when the kids were grown up (and I had more time), I wanted to make life better for others. I wanted to see others, especially people with disabilities, have a better life.”
Hackett started doing advocacy work in 2001 shortly after VCIL’s Sue Williams Freedom Fund helped him to acquire a computer. Hackett had just been diagnosed with an extremely rare movement disorder and was dealing with communication issues associated with severe tremor. The computer was an immense help since writing was a problem and it was extremely important to be able to type.
He was making regular trips to a specialty hospital in New York City for treatment. “The future I had was looking pretty bleak at that moment.” Dale happened to be on his way to the NYC hospital on Sept. 11, 2001. He got as far as New Haven, Conn., before realizing that he should turn around. A woman who worked at the hospital, which was located so close to the twin towers that people watched the mayhem from the roof, called Dale that very evening to make sure he had gotten home safely.
“Someone really cared,” said Hackett.”That’s someone going above and beyond.” He said this is a shining example of person-centered care — a concept he promotes in his advocacy work.
Hackett’s earliest foray into advocacy work came about through an online chat room for people with rare neurological disorders. He did a lot of painstaking research that a doctor friend he met through the chat room would post in the hopes of helping others. Hackett made strong connections through the chat room —people from all over the world who he remembers fondly, and sometimes sadly — including a father of three who died despite undergoing deep brain stimulation to try to improve his situation.
Around 2002, the focus of Dale’s advocacy work became broader when someone from VCIL asked him if he would like to cover legislative issues as an advocate. Around the same time, he was asked if he would be interested in serving on the Medicaid Advisory Board (which is now the Medicaid & Exchange Advisory Board). He has been serving on the board ever since.
Hackett also serves on the Vermont Developmental Disabilities Council Board, the State Innovation Model Steering Committee, several SIM work groups, a Vermont Health Care Innovation Project Care Models and Care Management work group, and the Disability and Long Term Services and Supports Work Group.
Fellow advocate and DLTSS Co-Chairperson Deborah Lisi-Baker said, “The discussions in all of these groups are complex and wide-ranging. Dale is always there, well prepared and focused on the topics — always concerned that system reform is done carefully with the interests of ordinary people, including Vermonters with disabilities, kept in the forefront.”
Hackett said, “I strongly believe that you can’t separate mental health from physical health. You don’t have parity until you understand that you can’t separate the two. After understanding how they’re integrated, then we can talk about equal access.”
“There is so much change going on right now that affects everyone,” noted Hackett, referring to the health care reform brought about by the Affordable Care Act.
Hackett monitors many issues for VCIL at the State House during a given session, but no matter the committee or the issue, health care is often an underlying theme. Examples from the past legislative session include physician-assisted suicide and the involuntary commitment and medication bill.
VCIL Civil Rights Manager Kim Brittenham said, “Dale’s countless hours at the State House monitoring issues that matter to people with disabilities are vital to VCIL. He writes very detailed reports of his observations, which inform VCIL’s advocacy work. In these tough times when staff members are stretched thin and peers are increasingly in crisis due to budget cuts to programs, Dale is an invaluable member of our team.”
Hackett has seen some successes during his years as an advocate; one that particularly touched his heart was the enactment of a law that provides free meals for low-income schoolchildren. Starting in the 2013-2014 school year, students meeting the reduced-price income guidelines, households at or below 185 percent of poverty, will receive breakfast and lunch at no charge.
He has seen first-hand the many challenges that advocates face.
“Budget rescissions concern me,” said Hackett, noting how frustrating it is when you can’t be certain that the work you strove for all session long will stand.
Although Hackett has almost died from his disabilities, he sees a silver lining. “Disabilities are challenges in life that can sometimes bring out the best in a person. Don’t write off people with disabilities — instead watch and see what they can do.”
When Hackett is not busy with his countless advocacy activities, he enjoys photography and writing. A person once told Dale that one of his photos so inspired the person, he decided against taking his own life as he had been considering doing.
“That’s when I realized that as with advocacy work, you never know when you’re making a difference. You just do what needs to be done.”
Hackett urges other people with disabilities and elders to go out into the world and try to be an agent for change. “No voice is a sure way to lose. It may be difficult to be heard, but accept the challenge and at least you have a chance (of effecting change). Stay quiet and you lose.”
Citing the mantra of the Vermont Coalition for Disability Rights, he concluded, “Nothing about us without us.”