Members of the Nonotuck Resource Associates community—including staff and people served—recently testified to the The Joint Committee on Children, Families and Persons with Disabilities in support of Senate Bill 109, which would formally recognize Supported Decision Making (SDM) in Massachusetts statute.
Since 2013, Nonotuck and the Center for Public Representation have partnered on SDM as a pilot project providing 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.
Nonotuck Program Director for Community Based Day Services Sandy Deare-Robinson testified on the power of SDM viewed through the lens of her relationship with Amanda Jo Benoit. Sandy and Amanda have shared a home through Nonotuck’s Shared Living program since 2009, and have participated in SDM since 2014.
“Amanda knows who is in her life and who she trusts, and she is capable of making decisions. She just benefits from the help of her SDM Team, which provides her with moral support, one-to-one discussions of pros and cons, and information on the big picture of a decision. When Amanda joined the Nonotuck and CPR SDM pilot, she made an awesome choice for her future,” Sandy testified.
Amanda described how the program has helped her to travel the world, as well as to earn a Green belt in Taekwondo. “My SDM Team helps me with decisions with: my health; money; karate, a new day program, traveling, and with my boyfriend Joey,” she said. “In the end, my voice matters! Please support the SDM Bill and help us follow our dreams.”
Johnathan Jenkins of Pittsfield testified to the help his SDM team provided him in navigating his job at a local grocery store, traveling around the United States, and even purchasing a new flatscreen TV for his home. “My SDM Team helps me grow in my skills and understanding such as with my banking, making health decisions at doctors and dentist appointments and buying healthy food choices,” Johnathan said. “My SDM Team is very important to me and I trust them.”.
Nonotuck Care Manager Maggy Walto also testified. “Naturally most of us use a form of Supported Decision Making in our lives. When we receive a medical diagnosis or need to make a big decision, we tend to lean on our closest support to help us,” she said. “People with disabilities deserve the same opportunity. Currently families have no other model but guardianship to choose from for their loved one.”
In addition to in-person testimony Cory Carlotta (above) and James Cowell (below) submitted video testimony for consideration.
Nonotuck President/CEO George H. Fleischner has witnessed first-hand the powerful effects of Supported Decision Making. “When each of the participants formally became an active Supportive Decision Making user, either by court decree or by a notarized document, I witnessed from the participant and their families more joy, more pride, more love and more happiness than any singular event in my 40 years of service,” George says. “Families held an intense level of pride for their loved one. One could touch the love that passed between family members. The joy seemed endless and the families were authentically happy.”
Full details on the hearing are available here.
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.
