Throughout the history of the disability rights movement, people with disabilities and their parents have been at the forefront in advocating for national and state services and programs. While siblings of people with intellectual and/or developmental disabilities (IDD) haven’t garnered as much attention, The Arc recognizes that siblings play a critical role in the lives of their sibling with IDD.
For siblings to be the best advocates they can be, it is important that they have access to information and resources that can help them make informed decisions, whatever their involvement. The Arc’s Sibling Council is one way for siblings of people with IDD to get access to resources and take part in The Arc’s grassroots advocacy efforts nationwide.
Members of the Sibling Council bring a wide range of expertise and passion, and they volunteer to serve a two-year term. Currently, the eight members are directing their advocacy efforts around two primary initiatives: competitive wages for direct support professionals (DSPs) and home and community-based services (HCBS). DSPs are a critical workforce that provides daily personal care and other independent living support services for many people with IDD. The National Sibling Council also hosts sessions at The Arc’s annual National Convention for siblings to connect and learn about ways to get involved in advocacy.
Liz Mahar, the Director of Family & Sibling Initiatives at The Arc, knows firsthand the importance of being an informed advocate. Liz has navigated her own challenges while supporting her sister, Crystal, from across the country. “As siblings, we can get lost in the day-to-day of supporting our loved one,” says Liz, “but it’s important to understand the ABCs of the service system in order to be an empowered advocate and more effective supporter.”
Hannah Roundtree, a member of The Arc’s Sibling Council, explains her family’s struggle in navigating the service system: “Growing up in rural Texas, my family faced a lot of challenges when it came to not only accessing supports and services for my brother, but even accessing the basic knowledge.” Hannah’s role on the council has allowed her to be a more effective advocate.
According to Acrystal Pugh from California, who joined the Sibling Council to improve the well-being and future of all siblings, siblings of people with IDD are the next best “line of defense.”
What can you do? Here are some ways for siblings of people with IDD to get involved and stay informed about The Arc’s advocacy movement:
• Register for The Arc’s sibling webinar on Tuesday, June 28 at 2:00 p.m. ET to learn about the resources and information available to all siblings.
• Connect with a state or local chapter of The Arc to join their advocacy efforts.
• Sign up for The Arc’s sibling newsletter and The Arc’s action alerts to become more engaged in disability advocacy.
• Contact Liz Mahar (email@example.com), the Director of Family & Sibling Initiatives at The Arc, to learn about future opportunities to join the Sibling Council.