Sibling Resource Page

Updated June 15, 2007 Welcome to the new sibling Resource Network Page. Here you will find links to key information regarding current research on aging families, siblings, and aging issues. In addition to finding information on the current work of the RRTC on future planning for siblings and families, you will also find links to initiatives for sibling leadership and lifespan supports for siblings of people with developmental disabilities. If you are interested in joing the Sibling Leadership Network, please contact John and ask him to subscribe to the Sibling Leadership Network Listserv to get information on upcoming sibling-related events across the country. This page will is a work in progress, so please stop back often! -John
Upcoming Events
The Sibling Leadership Network
Announcing the Sibling Leadership Network: Setting an Agenda for Advocacy, Research, and Policy AUCD Preconference Event November 9-10, 2007 Washington D. C.	Of any family member, brothers and sisters will likely have the longest-lasting relationship with individuals who have developmental disabilities.  The Sibling Leadership Network passionately believes that siblings with and without disabilities can effectively advocate for policies that will benefit people with disabilities and their families.  In the United States alone, there are millions of siblings of people with disabilities.  Despite the ever-changing roles they will assume in the lives of their siblings with special needs, there is relatively little research on siblings and their concerns.  The Sibling Leadership Network is interested in research that investigates resilience, support opportunities, and life choices across the lifespan.  We realize that the sibling relationship is a two-way street; consequently, we want to explore the sibling relationship from the perspectives of sibs with—as well as without--disabilities.   This meeting will be a conversation among siblings, researchers, service providers, and policymakers.  The goal of the meeting is to translate the results of this conversation into a plan of action.  During this time, we’ll ratify the Sibling Leadership Network’s mission and values, discuss siblings’ concerns with researchers and policymakers, and learn what current research reveals about brothers and sisters.  Finally, we’ll develop an action plan and a white paper on sibling issues, policy recommendations, and a research agenda.  Whether you are a sibling, a service provider, a researcher, or a policymaker, we hope you’ll join us for this exciting, historical event!
Friday, November 9	Saturday, November 10th
9-10:30 Introductory Remarks Overview Keynote Introductions 10:45- 11:45 Sibling Leadership Network Review and ratify: Description of Sibling Leadership Network SLN Mission Statement SLN Purpose SLN Core values 12-1 Lunch 1-3:00 Research Across the Lifespan A major issue in sibling research is understanding risk, resilience and opportunities for supporting siblings across the life span.   Therefore we are interested in the variety of sibling experiences and are concerned with understanding when and how being a sibling affects the life choices of brothers and sisters across the life span. Finally, we seek to identify particular issues, time periods, and critical decision making points when specific supports might promote the well-being of siblings.  We note that the voices of the siblings with a disability are notably absent from the research literature; little is known about how sibling relationships affect the individual with a disability across the life span.  Issues in Childhood Investigating support needs of adults in caring for their siblings with disabilities Examining future planning issues for siblings of  younger and older adults with disabilities Experiences of Adult Siblings 3:30-4:30 Developing a national research agenda regarding sibling issues	9-10:15 Leader Panel 10:30-11:45 Policy Panel Educate DC-based lawmakers, policymakers, and bureaucrats about sibs’ life-long and ever-changing concerns Developing sibling policy statement Incorporating sibs into contemporary family policy Including reauthorization of the Family Support Act Setting a national agenda regarding sibling issues; Drawing attention to the issues of aging persons with developmental disabilities and the role of sibling caregivers. 1-3:30 Developing Action Strategy In this meeting we will develop... A white paper on sibling issues and policies A press release to disseminate at the end of the meeting A plan for developing statewide sibling leadership initiatives Providing attendees to the AUCD conference with information about sibling issues and an overview of the proceedings of the SLN meeting. Hotel Information Renaissance Washington, DC Hotel 999 Ninth Street NW Washington, District Of Columbia 20001 USA Phone:  1-202-898-9000 Fax:  1-202-289-0947 For more information, Contact: John Kramer Phone: 312-996-7988 Fax: 312-996-6942 E-mail: jkrame3@uic.edu
Sponsors	Partners
	Columbus, OH- The most recent meeting occurred during the 6th annual Ohio Special Initiatives for Brothers and Sisters (SIBS). This Sibling Leadership planning meeting was the third in a series of meetings to brainstorm the creation of a sibling leadership network.  This meeting covered a) how to reach new sibling leaders/interested siblings; b) what a sibling leadership network could do for siblings and, c) what the core values/mission statement for a Sibling Leadership Network might look like.  Finally, this group decided on a December 15th deadline to create a mission statement, contact the Administration on Developmental Disabilities, drafting a survey to find out whether or not siblings currently serve on Developmental Disability Councils, and to draft a one page flyer explaining why sibling leadership is important (which would be used to disseminate to potential new members).
Washington D.C.- Thank you to all the siblings and leaders who turned out to this year's Association of University Centers on Disability. This meeting was the third in a series of meetings to develop a sibling leadership network across the country.  This group convened Monday evening during the AUCD meeting in 2006.  This group discussed 1)developing an inventory of what UCEDDs/LENDs are currently doing to meet the needs of siblings; 2) what a vision for a sibling leadership network would look like and what its mission would be; and 3) how to reach siblings who are not currently known by service systems.  Broadly speaking, members of the group were very interested in ensuring a rising sibling presence at AUCD, and developing an annual sibling meeting within AUCD was also recommended.  Members cited the potential for a looming crisis of aging parents and concerns that sibling issues have proven to be difficult to get funding for.  Members also stressed the importance of how siblings can benefit their brothers and sisters with disabilities, “my brother needs to be there and know what’s going on,” said a self advocate attending the meeting.
	San Diego, CA- Overall, the San Diego Arc conference went very well.  Thanks to the Arc for including the sibling track on Friday- it was very helpful. Not only did it provide a chance to meet siblings new to the Arc, it also connected siblings with existing sibling leaders in the Arc.  We need to do more of this! Siblings convened at the Arc’s national convention to brainstorm a vision for a new broad-based sibling movement.  This meeting covered: 1) what a sibling leadership initiative might look like, 2) who will be part of this organization, 3) how to develop a sibling network and, 4) next steps to implementing this movement.  Broadly speaking, the key issues raised in this meeting centered on reaching new siblings, where such a network would reside, and what concrete steps can be taken to get more siblings involved in advocacy. We are excited to keep the discussion going in some upcoming events.  We’re going to hold sibling leadership meetings at this year’s AUCD conference (Washington D.C.) on Monday, Oct. 30th and plans are underway for a meeting at Ohio SIBS (Columbus, OH) on November 3rd.  Let us know if you are planning on coming to either of these events- it would be great to see you there!  We are also planning a phone conference after the New Year to check in about ongoing development efforts.  More to come on that this Fall…
Age
Stay tuned here for information on aging.
External Research
Stay tuned for upcoming research
Advocacy Tools
Future Planning Resources for Families
Past Conferences