Mira Patel, who works for the DeKalb Community Service Board is a sibling advocate. Her brother Rahul has a developmental disability. Patel says being a sibling advocate has shaped her life and that she has worked in disability services since 2015.
“I love working in this field. I started off just trying to help my brother. I can relate to people who need these services,” said Patel. “A sibling is just as affected as a parent, but people don’t realize that. Siblings, I think may have more role of a parent because you are a sibling for life. It’s a lifetime commitment.”
Kelly Parry, who works for the Department of Behavioral Health and Developmental Disabilities (DBHDD), is also a sibling advocate for her brother Jack who has a developmental disability. Parry said her brother has high support needs, and for the level of care he gets, she and her family have to fight to be aware of policy and funding changes, so he does not lose those services.
“With his disability, my brother relies on the advocacy of his community,” said Parry. “Those who don’t have the time or flexibility to represent themselves, I try to occupy so when important decisions are made, I try to keep in mind those with high support needs.”
The Georgia Sibling Connection is a group that provides siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and promote issues important to them and their entire families. The Sibling Leadership Network provides siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and promote the issues important to them and their families. The purpose of the Sibling Leadership Network is to promote a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the lifespan, enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families.
Sibling advocate Angela West Brown has a sister, Dominique, with a developmental disability. West Brown wrote the book Lost and Found to chronicle her family’s journey as they tried to navigate the world of feeling lost, pain and confusion when it came to figuring out the best way to help her sister as she stepped into young adulthood. West Brown works with siblings of individuals with disabilities, Autism Speaks, Parent to Parent GA, The Sibling Leadership Network, Sibling Transformation Project and DreamAble Expert Presenter with Workshop Abilities, and more.
“I have been an advocate for over 5 years. I advocate for early preparation, education, and awareness of transition planning and the intricate process of developing a successful transition into adulthood for young adults with intellectual developmental disabilities for parents who are new to the process,” said West Brown.
Parry said she is doing all she can to bring siblings together because she loves being in a community with other siblings of individuals with developmental disabilities and creating spaces to help build that community.
“My parents took on everything for my brother Jack to create a quality life. I have seen improvements in the system but would like to see more interconnected needs and examples of individuals with developmental disabilities living more holistically,” said Parry. “Siblings have an opportunity to be a natural support because they provide a different perspective. I’m in partnership with you as your sibling. Independence for my brother will always include an aide,” she explained.
“National Siblings Day is important because siblings are a lifetime companion,” said Patel who is also involved with the Sibling Transformation Project. “We may not always agree, and I had to grow up fast, but I am glad I have my brother in my life. National Siblings Day needs to be acknowledged and recognized.”
West Brown works as an Individualized Education Planning Transition Coach (IEP) where she assists parents with children who are in transition from childhood to adulthood.
“When working with parents along this special education journey, I’ve learned that parents just want to know that they’ve done something right. As a sibling, I give a dynamic perspective to their experience. A cheat sheet if you will, helping parents to create a realistic plan for the future, designed with their child in mind, from a familiar voice (the sibling perspective) is refreshing and reassuring,” said West Brown. “National Sibling Day is important because it is a day to show the world a glimpse into the treasures of our hearts and our love for our sisters and brothers 365 days a year.”
GCDD’s Council Chair Nick Perry, Executive Director D’Arcy Robb, and Public Policy Fellow Aaron Quick are all sibling advocates. For more information on becoming a sibling advocate, visit siblingleadership.org, Georgia Sibling Connection, or siblingtransformation.org.