ICI’s Impact focuses on siblings of people with intellectual and developmental disabilities

Siblings of people with intellectual and developmental disabilities (IDD) are frequently involved in their brother’s or sister’s life longer than anyone else in their family, but they are often overlooked by service providers, family members, and others. The new Impact issue from the College’s Institute on Community Integration (ICI) delves into these important and dynamic relationships over the life course.

Led by guest editors from across the country who are leading voices in the sibling community, the issue explores what we know about siblings’ roles and needs across the lifespan, their feelings about themselves and their siblings, and how to support them. It includes their personal stories, profiles of organizations around the world that are giving them a place to connect with one another, strategies and resources for addressing their concerns, and research findings about them. Guest editors from outside ICI were Katie Arnold, executive director of the Sibling Leadership Network and community education director for the Institute on Disability and Human Development at University of Illinois at Chicago; Emily Holl, director of the Sibling Support Project, Bellevue, Washington; and Emily Shea Tanis, co-director for policy and advocacy at the Coleman Institute for Cognitive Disabilities at the University of Colorado, Boulder.

“As a sibling of a brother with multiple disabilities, I have often felt my situation was too different for others to understand. This issue reminds me that I am connected to a larger group of siblings who really understand my experiences,” said Sarah Hall, an ICI research associate who served as a guest editor for the issue. “This issue is also essential for helping parents and professionals to understand the sibling experience and support siblings throughout their lives.” Another guest editor from within ICI, Jerry Smith, contributed a personal essay about his sister Gayle and her influence on his career.

Published by ICI and the Research and Training Center on Community Living and Employment, Impact is supported in part by grants from the U.S. Department of Health and Human Services and the National Institute on Disability, Independent Living, and Rehabilitation Research.

Articles in the issue range from an academic look at how sibling roles and needs change over the course of their lives, to very personal stories of family experiences, to important public policy issues and advice on handling grief and loss issues. Both print and online versions of the issue point readers to multiple sources of further information on sibling issues.

The issue also pays tribute to Vicki Gaylord, Impact’s managing editor, who is retiring from ICI after nearly 32 years of service. Under her leadership, more than 70 issues of the magazine have been produced, in addition to her other responsibilities.

“This magazine has without question moved us toward greater inclusion, self-determination, and empowerment of people with disabilities,” Smith said in the tribute. “For this, we owe Vicki a tremendous debt of gratitude.”