My name is George H. Fleischner. For the past forty years I’ve worked directly with and for people with intellectual disabilities, physical disabilities and mental illness. For the last thirty-four years I’ve been the President/CEO of Nonotuck Resource Associates, Inc. Nonotuck is a not for profit organization that was created in 1972 by the families of children institutionalized who wanted their kids to live and be supported in the community. Currently Nonotuck serves over 1,200 people in shared living and Adult Family Care out of thirteen offices from Lee to Cape Cod. Our administrative office is in Northampton.
In 2013 Nonotuck formed a partnership with the Center of Public Representation [CPR] to pilot a Supportive Decision Making [SDM] Project for western Massachusetts. In the simplest of explanations Nonotuck’s role was to find ten people from the 150 people we served in western Mass who were interested in participating in the Pilot. CPR would provide the deeper legal explanation of SDM to the people interested and their families/guardians. As the process moved forward with each person/family Nonotuck would provide on-going support to the participant and the family. Nonotuck helped the participant determine who they wanted to be their supporters. Supporters are a critical part of SDM. Supporters help the participant to understand the issues surrounding an important decision without injecting their personal preference or opinion into the decision-making process. Meanwhile, CPR closed the loop to SDM by completing the necessary legal documentation and court proceedings. From day one every effort was made to insure the participant had control over the decisions that would affect the SDM process. Eight years into the Pilot working with the participants and their supporters, to help keep the principals of SDM in place, has become part of the natural fabric of the work day for Nonotuck staff.
In my job, which I love, I’ve personally experienced the emotions of love, joy, happiness, pride and laughter. I’ve also experienced sorrow, tears, sadness, pain, agony and grief. And, in these forty years, I’ve witnessed these emotions and more from the people I served and their families.
It’s been an honor to work for people with disabilities and their families. Somehow, someway, somebody lead me to this incredible life path. There has been no distinction between the values I hold dear to me in my personal life and those I find in my heart in my work life. I’m a fortunate person to have this opportunity. I feel very blessed.
There have been countless moments in lives of the people Nonotuck serves of pure joy. People found joy while vacationing in Africa, Europe, Southeast Asia, the west coast or the south. They found joy being part of the wedding party, putting on a birthday party for a friend or relative or celebrating a holiday or other meaningful event. Or the joy of becoming and aunt or uncle or by running the bases at Fenway Park.
There have been countless moments of love between brother and sister, mother and child, father and child, friend to friend to friend to friend. And there have been moments of pride. Pride in being told of a job well done. Pride in finishing a difficult project. Pride in finishing another year of education. Pride in oneself.
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. 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.
For the participants in the pilot pride, love, joy and happiness did not stand alone in the process of moving into SDM. The participant grew, she/he became more aware of her/his responsibility. They thought through the consequences of decisions on others. A decision became theirs and they had to take responsibility for it. The participants felt a sense of freedom to choose but the participants learned the dread of a choice. It became easier to seek out help because they felt advise wouldn’t come with judgement. Their relationships with family grew closer, more respectful, more authentic and more adult.
For the families, often, they saw the decision maker side of their loved one. As supporters they had to take a deeper look into their love one’s life and be less judgmental, more forgiving and more equal.
In conclusion, eight years into this Pilot, we see that there is much and more to the clinical and legal positives to SDM. SDM brings people together. It brings families closer. Service providers are more involved, more aware of the participant and closer to the family. But most importantly, the participants grow, have control of their lives and experience love, pride, joy and happiness.
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.