Imagine you’re a 17-year-old who has a developmental disability. You know your parents love and support you, but they make decisions on your behalf. You want to make decisions for yourself. As your 18th birthday approaches, you want to exercise your independence, but they want to begin the process of guardianship.
In the Commonwealth of Pennsylvania, the only legally binding option is guardianship. However, in 13 states, there is a legal alternative called Supported Decision-Making (SDM).
SDM is a tool that allows people with disabilities to retain their decision-making capacity by setting up their own support system. A person using SDM selects trusted advisors, such as friends, family members or professionals, to serve as supporters. The supporters are trained to work with the decision-maker to have autonomy and the dignity to make their own decisions.
In January 2020, community member Marsha Timmerman joined Lehigh Valley Center for Independent Living (LVCIL) staff at an informational SDM workshop at the Jewish Community Center in Manhattan, New York. The program resonated with Timmerman. As a mother of an adult son with a disability, Timmerman said, “If my son has a group of four to five advisors who can give him guidance in any situation, I will feel better.”
Timmerman connected LVCIL and staff at Jewish Family Service of the Lehigh Valley to begin to explore a partnership. Recognizing that the agencies have a shared vision of wanting to legitimize SDM, they began monthly meetings to strategize, organize and utilize their respective resources.
“When Marsha reached out to us, it was a reminder that there are limited supports for persons with disabilities in the Jewish community,” said Chelsea Karp, JFS volunteer coordinator. Wanting to move beyond the once-a-year Jewish Disability Awareness, Acceptance and Inclusion Month programming they provide each February, JFS sees SDM as an empowering tool that aligns with the agency mission and values.
“Partnering with LVCIL has given us the confidence to begin to lead the way for bringing SDM to the Lehigh Valley,” added Karp.
“SDM is directly aligned with our mission to help all people with disabilities live independently in the community in a world free of barriers,” said Brian Pedersen, development coordinator for LVCIL. “That includes those barriers that exist when young people with disabilities are prevented from making their own decisions. We view SDM as an essential component in helping young people with disabilities gain self-sufficiency, self-confidence and the ability to develop meaningful connections in the community. It’s a viable alternative to guardianship.”
Since guardianship is ingrained as the only option for families, the agencies decided to sponsor an informational program to introduce SDM to the Lehigh Valley. On Feb. 17 from 7 to 8:30 p.m., the Hon. Kris Glen, SDMNY project manager, and Joan Coranchio, SDMNY site coordinator, will talk about the process of bringing SDM to the community. In addition, the event will also present a decision-maker and supporter to talk about their experience.
JFS Community Impact Coordinator Rebecca Axelrod-Cooper, LSW, said, “It’s not about getting things right or not making mistakes, it’s about self-determination.”