by Kitty Porterfield
There were so many reasons to accept the gracious invitation from NYSARC, Inc., the New York chapter of The Arc, to present a workshop about siblings at their annual Guardianship Training Symposium in Sarasota Springs, NY. These reasons included connecting with new siblings, advocating on behalf of our brothers and sisters, advocating on behalf of our own inclusion in our families’ future planning, and just plain old telling our stories. So, Barb Sapharas and I set out at the end of April for New York.
NYSARC Guardianship programs provide advocacy and guardianship services to New York citizens with disabilities and their families. The symposium, entitled “Guardianship and Supported Decision-Making: Innovations in Thinking and Practice,” presented both up-to-date information on current legislation and an array of best practices in client-centered care. The audience included staff and volunteers who serve NYSARC chapters and guardianship committees across the state, family members, other advocates, private attorneys, and representatives from other state agencies and disability programs.
Our job—Barb’s and mine—was to demonstrate how siblings can play an important role in a family’s future planning and in a sibling with a disability’s supported decision-making. Not every sibling can, or decides to be, a legal guardian, and not every person with a disability needs a legal guardian, but there are many ways in which brothers and sisters can make contributions.
- We talked about the need for early future planning with the whole family, for talking about the hard issues of death and dollars before a crisis hits, and about how siblings are often the last caregivers left standing.
- We talked about how, in these discussions, sibs can be the “content experts.” Often we are the ones who know best what our brothers and sisters really like and need.
- We spelled out ways to be an effective long-distance guardian and advocate.
- We offered concrete strategies (and here Barb is the champ) for enabling our sibs to make supported decisions.
Most of all we told stories about our own families and our own lives and how we have tried to help our families pull together—through some tough times—to make it work for our brothers, Nick and Johnny. We also testified to the fact that we have learned as much from our sibs as they from us. Barb and I agreed later that it was the stories that carried the day. Thanks to NYSARC for the opportunity.