In late September, at a series of gatherings spread across four counties in southern Ontario, families of people with intellectual and developmental disabilities took the first steps towards a new way of connecting and finding solutions for their loved ones.
The gatherings were the results of months of planning and organization by the Resonance Centre for Social Evolution working with Community Living Trent Highlands and Community Living West Northumberland.
As executive director for Community Living Trent Highlands, Teresa Jordan sees first-hand the challenges of meeting the needs of families living with disabilities. Her work puts her in touch with over a thousand families spread across multiple counties.
The families are united by a shared understanding and experience with the challenges of disability, but their loved ones each experience unique challenges and gifts, meaning Community Living must respond to “a vast array of needs, abilities, and desires,” says Teresa. And a single service organization, limited by money, bureaucracy, and legislation, can’t possibly cover it all.
But, says Teresa, “I don’t think the answer is more money. Families who know their loved ones can best define a path to community. I tell my staff, we are here to walk alongside families, and fill in the gaps.”
Instead, “the future lies in people being connected to their natural circles wherever possible.”
By connecting families with disabilities in small groups, these gatherings took the first steps in nurturing that connection and turning it into real-world solutions.
The energy in the room at these meeting was immediate. Many in the room had shared histories of support and sharing dating back years or decades, and those who didn’t found immediate empathy and understanding among families who understood their situation better than any service organization could.
But it wasn’t a simple support group. Ideas quickly flew around about the role gatherings like these could serve: a shared pooling of resources and ideas, advocacy in the community to better integrate their loved ones, model initiatives from other communities that could be adapted and brought into their own. “I think we saw moments of real power, real hope, real connection,” says Teresa. “I think we have to build on that.”
During the gatherings community members shared what they would like to experience in a hosted network of support and community engagement.
For Teresa, the next steps involve reconvening and “making sure we’re reaching out to everyone who understands what we do. It’s about sharing. It’s about offering space and a jumping off point for families.”
When asked to imagine the best possible outcome of gatherings like this Teresa says, “We could have a group of parents who get connected and encourage each other to dream,” she responds. “They come up with ways to create new opportunities for their loved ones by pooling their resources—financial resources, idea resources, human resources. If there could be an improvement in the day-to-day lives of people with disabilities because their families were better connected, that would be the best possible outcome.”
Community Living Trent Highlands and the Resonance Centre are continuing conversations to sense what the next best steps might be in the direction of a support network for families living with intellectual and developmental disabilities.
Illustration by Jocasta Boone.
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