From autism to Down syndrome, disabilities cross all cultural and racial lines. In Indianapolis, local advocacy organizations are making special efforts to make sure no family feels isolated in their experience raising a child with special needs.
The Spanish phrase “Cuenta Conmigo” roughly translates in English to “Count on Me,” and it’s a fitting name for the group that first welcomed America Schubert when she learned her son would be born with Down syndrome. “I wanted to know what was coming,” says Schubert, who is Latina and bilingual. “I wanted to actually see the children. What’s the progress? Will my child be able to speak? How will I find out about therapy?”
Seven years later, Schubert now helps lead the community group as a volunteer, working to connect Hispanic and Spanish-speaking families in central Indiana who are affected by Down syndrome with the resources of Down Syndrome Indiana. “It’s been great to have a support group that you can not only get information from in your own language, but also connect with other families,” Schubert says. “We have a lot of families who don’t speak any English, and for every meeting, we make sure our presenter is bilingual or that we have an interpreter.” The group meets on the first Wednesday of each month from 6-8 pm at DSI’s offices. Down Syndrome Indiana’s network of community groups also includes a chapter of the Minority Families Down Syndrome Network, which meets the fourth Sunday of each month from 3-5 pm at DSI’s offices.
Volunteer leader Shauntel Neal-Howe, whose 10-year-old daughter, Zoe, has Down syndrome, stresses the importance of connecting families in the minority community with each other. “If you have new parents or people who are new to the area, it can be difficult to find each other,” she says. “It’s important for them to know that they’re not alone. Nine times out of ten, there is someone there who has been through it before.”
Meetings often feature guest speakers, panel discussions with local experts and social time designed for those with Down syndrome and their families, including siblings. Anyone who is affected by Down syndrome is invited to attend. “It’s not that we have a minority group and we’re in our own silo,” Neal-Howe says. “We’re trying to bring others into the broader community. We’re more alike than different.”
Outside of the Down syndrome community, other advocacy organizations are also placing renewed focus on connecting families with things in common, be it location, language or culture.
Grupo de Apollo para Latinos con Autismo, or GALA, is a support group for parents and families of children with autism that’s headed by the Leadership Education in Neurodevelopmental and Related Disorder Program at the Riley Child Development Center.
The group meets on the first Wednesday of each month at 6 pm, also utilizing space at DSI’s offices. Free childcare is provided while parents hear from area professionals who work with children with autism about local resources and current treatments and therapies.
The Autism Society of Indiana has local Allies across the state, including one who speaks Spanish, who are able to help direct families to nearby resources and support. Also, the Autism Resource Network of Indiana has thousands of resources about autism, including information on providers, insurance, Medicaid and schools, in both English and Spanish. ASI Chief Executive Ally Dana Renay says, “For me, it’s really important that we’re able to support all people, no matter what their background is or what language they speak.”
While ASI doesn’t currently have any Spanish-speaking support groups, Renay says she hopes the organization can continue to find new ways to reach out to minority communities. “We have the ability to support all people, we just don’t always know the best way to reach them,” she says. “I would love for people to tell us, ‘This is what we need, and this is why we’re struggling.’”
More information about Down Syndrome Indiana’s community groups can be found at www.dsindiana.org/CommunityGroups.php. For a map of allies with the Autism Society of Indiana, visit www.autismsocietyofindiana.org/asi-allies/4589375564