Connecting Families: Waisman network helps families with special needs through peer support

By Emily Leclerc | Waisman Science Writer

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.”

Wisconsin already has many helpful supports in place for families of children with special health care needs, but many families find that the existing resources don’t work well for them because their lived experiences are unique. “It is a cool thing we were able to build,” Chödrön says. “We were able to get creative with all of the folks out there who aren’t finding support with the currently available peer-to-peer options.”

Gail Chödrön, PhD
Gail Chödrön, PhD

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 them 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.

Building the right kind of space

Cultivating peer support approaches that are tailored to specific experiences can help members feel they are getting the support that they need. Each approach within Connecting Families is being intentionally designed and run by those with lived experience to create spaces that are culturally, linguistically, and situationally responsive. This also ensures that the group remains responsive to community needs.

PRO is connected to Wisconsin Sound Beginnings (Wisconsin’s Early Hearing, Detection and Intervention program) and the WI Birth to Three Program. Families automatically receive information from PRO if their newborn fails their hearing test. A support parent then reaches out to the family and asks if they need anything. They can provide a range of support from resources and information to just being someone to talk to. Connie Stevens, coordinator of PRO and a support parent, always emphasizes that the amount of support is entirely dictated by the family.

“I am a mother to a 25-year-old who is deaf and has Down syndrome. In 2017, the Department of Human Services got a grant to focus on parent-to-parent support after diagnoses across the hearing spectrum. We started reaching out to families in 2018 and have been doing it ever since,” Stevens says. “We’re here to just let them know that there’s a network of people they can connect with. We’ll talk about opportunities and the importance of giving parents information in a way that they want it when they want it. There is also just a lot of emotional support because we don’t want people to feel isolated.”

A young blonde boy holding an orange balloon sitting on the floor with his mother
Stacie Buchanan and her son Eugene

Stacie Buchanan, a support parent in PRO, became involved with the program when her son Eugene was diagnosed with moderate hearing loss in one ear. She got connected with one of the support parents and took great comfort in being able to talk with someone who had gone through something similar. Buchanan then began attending PRO’s monthly meetings for her own sake but also her son’s. “It’s nice for him to see others with hearing aids,” Buchanan says. “He is always excited to see the other kids and show off his hearing aid.” She continued to stay involved with the program in order to help families in the same way that PRO helped her.

Sankofa follows the same core mission as PRO but it is designed specifically to support Black families of children with disabilities. Sankofa was originally created at the University of California, Davis (UC Davis). Ida Winters, WI LEND graduate and Waisman Center family engagement specialist, thought that its model was exactly what they needed here. So, Winters, alongside collaborator Chioma Torres, MD, developmental and behavioral pediatrician at Michigan State University Health Care, decided to bring Sankofa to the Midwest to provide culturally specific support to Black families in midwestern states that are connected to the Great Lakes.

“I think of it kind of like precision medicine,” Winters says. “You can give me the same thing that you are giving everyone but it isn’t precise to me or my experiences. There are great groups out there but a lot of the time they are not culturally sensitive or tailored to certain people. And having a group where the culture reflects your own is special.”

Ida Winters

To ensure that Sankofa’s community is receiving the support they want and feel is relevant to their experiences, the group is run by a community advisory board composed of Black parents of children with disabilities. They identify topics or issues that are important to them or that they and others have struggled with. Then at the virtual monthly meetings, they pick out content experts to come and provide information alongside the time set aside to talk and connect.

“Unfortunately, there are experiences in certain communities or racial/ethic groups due to systemic or oppressive practices that continue to widen disparities,” Torres says. “It is powerful to know that you are not alone in your circumstance’s and to have other parents like you who are experiencing similar challenges share their wisdom, and how they navigated setbacks.”

Chioma Torres, MD

For the third area of unmet need, Danielle Gerber piloted a 6-week peer support group for a cohort of families of children with complex medical needs. Parents of children with complex medical needs may find it hard to find and get in touch with other parents who are going through something similar. Gerber certainly did.

“I am a parent of three kids. My oldest son Jack was diagnosed with a severe seizure disorder due to a genetic mutation. So, we quickly learned a lot about navigating the healthcare system and figuring out how to access what we needed,” says Danielle Gerber, LEND graduate, Waisman family engagement specialist, and coordinator for peer support approaches in this area. “Needless to say, it’s very complicated and I often felt very isolated and like I lacked support. I just didn’t even know where to look to find other families and things like that.”

Gerber worked with Chödrön and the rest of the team to identify gaps in the state’s peer-to-peer support, and families with children who have medical complexity was quickly identified as one of those gaps. It is a unique population that doesn’t fit nicely into other boxes and can be hard to build a community around. Gerber knew that if she struggled then other families out there might be struggling too.

The idea behind the pilot program is creating a space for these families that also has the flexibility to accommodate the unpredictability of their lives. Having a child with complex needs who may also be medically fragile means that the parents likely cannot guarantee that they can make scheduled meetings. Gerber is working to build a space that will have regular meetings but will also be available and sustainable when families just can’t make it. But they will know that there is always a safe space where they can go to get support and advice.

Danielle Gerber

“There is just so much uncertainty. And I know I was just getting up and trying to make it through the day and keep Jack as healthy as we could,” Gerber says. “That didn’t leave time for anything else. So, I am trying to recognize that for other families and envision what support could look like knowing that sometimes you are just hanging on by a thread.”

Alongside the one-to-one and group peer supports, Connecting Families is also working to build supports, trainings, and resources for the support parents. It can be tough mentally and emotionally to offer peer support, and support parents often face struggles and burn out. “There is a lot of emotional work that takes place to support other families,” Stevens says. “It is important to recognize that work.”

The network wants to have trainings and resources in place for support parents to better equip them to handle a variety of things when families comes to them. “We’re building larger sets of trainings around cultural and linguistic competences, breaking biases, setting healthy boundaries, trauma-informed responses, and more,” Chödrön says. “We want to have a bigger menu of training to help us keep improving and also provide support for the support parents as a part of this learning community.”

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,” Buchanan says. “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.”