Nonotuck was honored to recently host a lively and informative workshop on Supportive Decision Making (SDM). Attorney Bob Fleischner (previously of the Center for Public Representation), Johnathan Jenkins, and Carrie Bona (who both receive services through Nonotuck) all told the story of SDM at the event, held January 10.
Over one hundred participants from all over the state enjoyed the workshop, which was held virtually.
The Center for Public Representation (which Fleischner served as assistant director of until his retirement in 2018) and Nonotuck Resource Associates have an ongoing pilot project using SDM as an alternative to guardianship. Under the program, people under or at risk of guardianship design a system of support—including a SDM support team—to help them make decisions on their own.
Johnathan Jenkins spoke about the transformative experience of supportive decision making. Although he says he usually depends on his parents for support, his SDM team also provides important assistance. His team helped him get more hours at his job at Guido’s Fresh Marketplace in the Berkshires.
“I like to work and make money and I needed help getting more hours, and so I had my team help me,” Jonathan says. “My friends at Guido’s take care of me at work. I work with my job coach Aunt Shannon and I have worked for Guido’s for 13 years. I love it there!”
Johnathan listed all the things SDM has allowed him to do, whether it be traveling all over the country, seeing favorite musicians (he is a big fan of 80’s music), and saving up to buy his own SmartTV. “Supportive Decision Making is Important to me because I feel I can make my own decisions and get help from my team to reach my goals,” he says.
Next, Carrie Bona—daughter of longtime Nonotuck’s Chair of the Board of Directors, the late Fred Bona—also spoke about her experience with SDM. “Now that my parents have passed away, I want to keep making decisions the way I did with their help. I need people who support me to make my own decisions, not someone to make decisions for me,” she said. “I don’t want another guardian; I’m realizing I don’t need one. I will keep choosing my friends, family, and Nonotuck team to help me get the information I need to make decisions, and help make sure others understand my wishes and decisions.”
She continued: “I am surrounded by people who care about me and support me….I hope supportive decision making is something everyone gets to know more about.”
Attorney Bob Fleischner finished up the event with an in-depth history of SDM, including how the practice is legislated inside and outside the United States. Additionally, Bob provided an immersive look at the process of how the SDM works.
Bob closed his presentation with a quote from retired Massachusetts Judge Gail Perlman, who was the first Justice of Hampshire County Probate Court, and an original advisor for the SDM pilot program: “The minute the person becomes a person, everything changes.”
“That’s what supportive decision making does; a person becomes a person in a legal sense again,” Bob added. “Their legal capacity is recognized, their ability to make their own decision is recognized. It is an important civil rights protection, it’s a human rights protection, and a personal achievement for people to be able to make their own decisions.”
Nonotuck CEO/President George H. Fleischner stresses the importance of the program, adding: “In my 35 years at Nonotuck this pilot is one of the most consequential projects we’ve undertaken,” he says. “To think that this SDM pilot was the first of its kind in the US and that organizations from across the globe are interested in our part of the pilot. Amazing."
Watch the full session below:
Learn how Nonotuck developed a love-based ideology of care. We started our shared living program as an alternative to group homes for people with disabilities. Instead, Shared Living creates genuine life transformation for people with disabilities, as well as families and communities. The true power of caregiving is found through hospitality, authenticity, and love.