The Sibling Leadership Network shared a nice concise information sheet from The Arc on how siblings can begin to think about and plan for the future of their brothers and sisters with disabilities. It’s available in both English and Spanish; click here.
As someone who was a caregiver for many years for my brother James who experienced autism and intellectual disabilities, I really encourage other siblings to take this opportunity to think about their relationship and how it may change over time, and to discuss it with their parents.
There can be a lot of apprehension, confusion, and unstated expectations that go along with sibling relationships and future planning but opening the discussion is important, and it doesn’t necessarily mean you’re committing to being a full time caregiver or guardian. There are also lots of ways to stay or become involved, even when living at a distance.
Everyone has unique family circumstances, but this tip sheet and the related resources are worth checking out if this is something that you’ve thought about but need a little help with how to go about it.
In an essay, “Who Sings the Shower Song?,” I wrote about my own experience discussing with my parents my brother’s future, and our subsequent adventures living together in Oregon. It’s in the book, “Thicker Than Water: Essays by Adult Siblings of People with Disabilities.” Read a copy of the essay by downloading a PDF excerpt from the book here.
Tom Keating, Ph.D. is founder and CEO of Cognitopia, home of the Cognitopia Platform for Self-Determination, emphasizing tools for IEP self-direction, goal management, task analysis, and team coordination. Keating has been focused for the past 20 years on research and development of self-management and community living applications for individuals with cognitive disabilities and has been principal investigator on over 20 federally-funded technology development projects. He is also a Courtesy Research Associate in the Computer and Information Sciences Department of the University of Oregon. Keating’s perspective in all of his work has been strongly influenced by his experience of 31 years as a primary supporter for a brother who experienced autism.