On June 13, 2017, Tony Phillips, a prominent self-advocate and ordained deacon, participated in a panel of experts from Germany, Israel, and the United States on the right to exercise legal capacity and to receive support in making decisions. He shared his experiences, some of which influenced him to join the SDMNY pilot program in New York City earlier in the year. He spoke about a series of complicated health-related decisions he had to make over the past year. These challenging decisions made him realize that, as he puts it, “I can be independent and also need support at the same time.”
Because of the health issues he experienced, he found himself largely dependent on health and service professionals to help him through surgery and rehabilitation. He grew frustrated that many of these “professionals” were at times unable to be professional “because they get overwhelmed” not just by the number of people they serve, but also by the rules, regulations, and policies that sometimes get in the way.
Part of what drew Tony to supported decision-making was its potential to allow him to put together a circle of support of his own choosing, rather than rely wholly on professionals assigned to him. “It’s my agreement and I get to choose who is in my circle. I don’t have to include anyone from an agency, and I don’t want to.” He added, “I have people in my life who care about me who can help me when I need to make tough decisions, like I had to do about my surgery and rehabilitation. I didn’t think about using supporters then, and I think I made some mistakes that I wouldn’t have made if I had them by my side.”
While he expressed excitement about the potential of supported decision-making for him and for others, he warned that “it can’t become just another service.” Rather, “it has to be something that persons with disabilities can do on their own, without agencies.”