Sibling Leadership Network Report

January 15, 2009

Sibling Leadership Network: Recommendations for Research, Advocacy, and Supports Relating to Siblings of People with Developmental Disabilities" (September 15, 2008) report. [Download; PDF]


The series of white papers contained in the Report provide recommendations for research, advocacy, and supports relating to siblings of persons with developmental disabilities. They emanate from the first national meeting of the Sibling Leadership Network (SLN), whose goal is to provide opportunities for the siblings of more than six million Americans with developmental disabilities to increase their involvement in disability advocacy, policy-making and services concerning their siblings with disabilities. Its mission is "to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families." The SLN promotes 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.

Beginning with a series of meetings in the Fall of 2006 to develop its mission, purpose, and values, the Sibling Leadership Network (SLN) convened for the first time on November 9 and 10th, 2007. Over 80 brothers and sisters of individuals with intellectual and developmental disabilities, researchers, policymakers, self-advocates, funders, and other committed professionals in the disabilities field attended the conference. The conference included ratification of the SLN mission, purpose, and values; presentations from experts, and the formation of working groups. During their two days together, SLN conference attendees heard presentations from a wide range of experts on the following topics: Sibling Issues Across the Lifespan, Future Planning Issues, Federal Agency Perspectives on Research, an International Roundtable on Research, and Leaders' Perspective on Policy.

Three working groups formed to develop white papers that would develop recommendations for action: 1) Research, 2) Policy and Advocacy, and 3) Services and Supports. Their tasks at the conference were to establish principles and outline action steps. Over the next twelve months, these groups developed the white papers included in this report. Their ultimate goal was to create opportunities for siblings to partner with government and service providers to ensure the highest quality of life, now and in the future, for their entire families.