Caring for someone with a disability is not a singular experience. It differs widely across families with different disabilities experiencing their own joys and challenges. Creating spaces where families of individuals with disabilities can come together and share their experiences can be an important comfort and support while navigating life. But because caring for someone with a disability can be such a varied experience, existing peer-to-peer support groups may not be focused enough to help families feel at home. The Waisman Center decided to build something that could help fill in those gaps – the Connecting Families network.
Connecting Families is a network of peer support in the Waisman Center’s University Center for Excellence in Developmental Disabilities (UCEDD) for families of children with special healthcare needs. What makes Connecting Families unique is that it nurtures the development of peer support approaches that address unmet needs in the community and that are designed by individuals with lived experience in that area. Each group within the Connecting Families network was designed specifically to address areas of unmet need and create spaces for more specialized support groups that address communities of people with specific experiences.
“Our mission is to hold space and provide culturally, linguistically, and situationally sensitive support and information for families,” says Gail Chödrön, PhD, director of the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI LEND) program and the UCEDD Community Training and Technical Assistance Coordinator. “The spirit of this work is that people with lived experience are creating solutions and leading the work. We are supporting them in that effort. People deserve to be able to shape something themselves that is responsive to their own needs.”
Currently, Connecting Families is actively providing peer support in three areas of unmet need and developing approaches in a fourth area, with plans to address additional areas of unmet need in the future. Parents Reaching Out (PRO) is a longstanding peer-to-peer support approach for parents of kids who are deaf or hard of hearing. Sankofa is a peer support group targeted specifically to Black families of children with disabilities. The third peer support group focuses on families of children with complex medical needs and brings parents together to support one another. Finally, peer support is being developed that is specifically designed for rural families and families that may be isolated geographically.
The disability community is large and varied and sometimes people need more focused spaces to feel supported. Connecting Families is trying to build a network that families can turn to when they need a little bit more specifically designed peer support that reflects their experiences.
“I feel like all of us want to belong to something and knowing that someone out there is similar or the same as you really makes you feel like you belong and that you aren’t so different. And you can see that others have made it down the path so you can as well,” says Stacie Buchanan, a support parent in PRO and a mother to a child with hearing loss. “It’s when most of us are at our worse stages that we feel alone and being able to let that stress out helps the path be smoother farther down the road.”
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