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"I'm Constantly Thinking About Bev and Her Future": Siblings Speak About Aging

by Don Meyer

No single topic is more worrisome for siblings than the future well-being of their brothers and sisters who have disabilities. Their concerns are obvious for anyone who cares to listen: Their brothers and sisters with disabilities are now routinely outliving their parents, many of their parents are reluctant to plan for the future, and waitlists for Home and Community-Based Services are as commonplace as they are obscene.

In May of 2009, I invited adult siblings -- ages 50 and older -- to be a part of an informal online survey about the concerns they have about their siblings who are also aging and the roles they play. The results, I am sorry to report, are not optimistic. However, I hope they will serve as a wake-up call for parents, policymakers, and service providers who are concerned about older Americans with disabilities and their families. Below are excerpts from the survey:




Brothers and sisters will be in the lives of family members who have disabilities longer than anyone. Theirs is a relationship easily in excess of 65 years. They will likely be the primary advocates for siblings who have disabilities when their parents are no longer around. And as these responses eloquently attest, these brothers and sisters desperately need parents and service providers who understand their unique concerns -- as well as information and support to help their sibs have dignified lives living and working in the community.

Don Meyer is the Director of the Sibling Support Project, CiTY. His most recent book is Thicker Than Water: Essays By Adult Siblings of People with Disabilities (Woodbine, 2009). He may be reached at 206/297-6368 or To read more of the sibling survey responses, and find other information about siblings visit


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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota ( Citation: Heller, T., Stafford, P., Davis, L.A., Sedlezky, L., & Gaylord, V. (Eds.). (Winter 2010). Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities, 23(1). [Minneapolis: University of Minnesota, Institute on Community Integration].

The PDF version of this Impact, with photos and graphics, is also online at

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