Judy Cohen and Cindy Vayonis want to make it easier for parents of adults with intellectual and developmental disabilities to network with, and learn from, one another.
They co-chair a new program, the Family Forum, created in partnership with The Branch (formerly Jewish Residential Services) and Friendship Circle of Pittsburgh. Cohen, a past JRS president, and Vayonis, who served on Friendship Circle’s board, are both parents of adult children served by the organizations.
The genesis of the Family Forum, Cohen said, began with the fear of children “graduating to the couch.”
“Kids who have disabilities, after they graduate from high school programs or special schools like the Children’s Institute, where our children went, or high school with an IEP, often their opportunities are limited,” she said. “A lot of parents say they ‘graduate to the couch’ because they stay home, and there’s not a lot for them in the community.”
JRS first sought to combat that outcome with Families in Transition, a committee formed to help parents concerned with housing needs, meaningful day activities, respite and transportation, among other issues.
Eventually, JRS, through the advocacy of Families in Tradition, set up group homes in Squirrel Hill.
“But it’s really broader than just housing,” Cohen said. “It’s really not Families in Transition, anymore. Our kids have gotten older. We looked at three broad areas that families are concerned about: housing, meaningful day activities, and then — the one that resonates most with me and a lot of families — what would happen to our kids if we’re not here to take care of them.”
“Long-term planning,” Vayonis said.
Family Forum, Cohen said, will provide opportunities to network and learn about those areas for families with loved ones who have an intellectual or developmental disability.
Friendship Circle Executive Director Rabbi Mordy Rudolph said his organization — which engages youth and adults with diverse abilities in a full range of social activities — works to ensure that the transition into adulthood is seamless, productive and as positive an experience as possible. Often, though, there is a gap.
“It’s always something we’re aware of,” Rudolph said, “so if there’s something we can do to make the process easier for parents and families, we’re open to do it.”
Family Forum, he said, is one way to help families involved with Friendship Circle and The Branch who don’t always overlap.
“Some of our members will graduate into a JRS program immediately, there are some folks who will, right away, move into a JRS group home but obviously, many don’t,” Rudolph said.
While Families in Transition evolved to be more staff-driven, this new committee is family-driven, said Alison Karabin, program director of The Branch and Family Forum liaison.
“I think there are a lot of families thinking — no matter how old they are — what their children or siblings’ lives are going to be like when they’re no longer around, and that’s a really big daunting question,” she said. “I know that’s one of the things Family Forum is going to work on.”
And while there is no set plan for what the Family Forum will look like, Karabin said, it will help answer that question.
“I know that’s one of the things this is going to work on — finding information for people and talking about it and helping people to get resources then need to make decisions,” she said.
The involvement of both The Branch and Friendship Circle will help eliminate the need for back-and-forth conversations, Karabin noted. Often, she said, someone will talk about an experience at a Friendship Circle event with a person seated next to them. That person would then talk about that information at a JRS event. The Family Forum will streamline the communication of information for parents.
Karabin said decisions made regarding the care of intellectually or developmentally loved ones can be emotionally wrenching.
“If you’ve fought for advocating for your child all your lives while they were school-aged, to decide to let them to live outside the home and have someone else take care of their day-to-day needs, that’s a really big change,” she said. “I think talking to other parents who have gone through that, you really get someone who understand what you’re going through.”
The idea is for parents who have walked the walk to help parents who are just beginning their journey, Vayonis said.
“I want to give back to them because there was no one around to do this for me,” she added. “I feel like we’ve gone down this path, we’re still learning every day, this wasn’t around a few years ago. We’re trying to develop it. I have such good feelings about it,” she said. PJC
The Family Forum kickoff meeting will be Thursday, Dec. 8 at 4 p.m. at Friendship Circle, 1922 Murray Ave.
David Rullo can be reached at email@example.com.