Creative solutions help build a good life
When Moving On advisor Susan Beayni talks with the project’s parents about the challenges of having a son or daughter with a disability, she speaks from personal experience. One of her daughters, Rebecca, was born with a developmental disability.
Beayni, who lives in Toronto, believes it is critical to build inclusive communities by thinking creatively and through “relationships that are freely given, because where there is mutuality and sharing of gifts this is what keeps us safe, secure and leading meaningful lives.”
Rebecca’s life is a case in point. Over the years, she and her family have built a network of supporters and friends who will be with her for the long-term. Rebecca, 28, lives in her own apartment (attached to, but separate from, the family home) and works with community groups, a museum and as part of a dance group whose dancers have different abilities.
Beayni first became involved with Moving On when she substituted for a Canadian Association for Community Living colleague at the project’s foundational meeting. An advisor since 2005, she is also director of family services for newly-formed PLAN (Planned Lifetime Advocacy Network) Toronto. The organization is dedicated to supporting families to plan so that their sons or daughters will continue to live a meaningful life into the future, including when their parents are no longer able to care for them.
“I love all of the families [in the Moving On project],” she says. “The courage and resilience are absolutely huge and the love for their son or daughter is over the moon. Nobody talks about their son or daughter as being a burden and sometimes it’s difficult to get the parent to say what’s hard because they don’t want to imply their son or daughter is a burden.”
Nonetheless, parents do have challenges, says Beayni, and one of the greatest is financial stress. “There are lots of expenses that are not covered and when you consider the 24/7 support costs when young people are out of school then that’s massive.”
Beayni knows that the families value being part of Moving On. “They are delighted with whatever comes through on the project.” She also knows they appreciate the project’s advisors, saying she was “absolutely touched from bottom of my heart at some of the things they said [in Member-to-Member Connection] in terms of how meaningful our conversations were to them.”
Beayni is impressed by the way the project’s administrators “are open to new ways of looking at things and will fund new things because of the way families are describing [their needs].
This type of flexibility is rare in programs for those who have special needs, she says, and “it is really powerful”. It is also a perfect fit for someone like Beayni, who believes the way forward is all about innovation and caring.