Sibling Leadership Network Report #1: White Paper Working Groups

Sibling Leadership Network Update

November 9-10, 2007

Washington D.C.- 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 group discussed services and supports, policy advocacy, and research,
and created three White Paper Working Groups that over the next twelve
months will delineate issues and make recommendations for change. Their
ultimate goal is 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.

Convening and Governance: The event was sponsored by the Rehabilitation
Research and Training Center on Aging with Developmental Disabilities and
the Kennedy Center at Vanderbilt University. The meeting was convened by a
steering committee composed primarily by representatives from The Institute
on Disability and Human Development at The University of Illinois at
Chicago, The Kennedy Center at Vanderbilt University, The Nisonger Center at
The Ohio State University and the Sibling Support Project of the United
States. The steering committee will continue to provide leadership and
coordination of activities, including coordinating the three White Paper
Working Groups throughout the year.

Presentations: During their two days together, SLN conference attendees
heard substantive, insightful, and inspiring presentations from a wide range
of experts. Topics included: Reviewing and Ratifying the Mission, Purpose,
and Values of the SLN, Sibling Issues Across the Lifespan, Future Planning
Issues, Federal Agency Perspectives on Research, an International
Roundtable, and Leaders' Perspective on Policy.

White Papers: Among the group's immediate next steps will be the drafting
of white papers on; policy and advocacy, research, and services and
supports. Working groups drafted their principles and 6-month action steps.
These are outlined below:

Policy/Advocacy While Paper Working Group


Because the sibling relationship has the potential of being one of our
longest existing relationships,

1. We believe that the term "family" should include siblings, and
anyone else that an individual with a disability considers family.

2. We believe that siblings have a unique and under represented voice
in advocacy for and with their brothers and sisters with disabilities.

3. We believe that all family members have a right to family support
that enhances the quality of life for all members.

4. We believe that there are millions of siblings who are an untapped
resource who can, with the proper support and encouragement, make a positive
impact in the lives of their brothers and sisters and others with

Action Steps:

1. Seek to include the word "sibling" in the federal Developmental
Disabilities Act by including siblings on all Developmental Disabilities
Councils and providing funding to support sibling programs.

2. Define other organizations across the nation with whom it would be
advantageous to partner.

3. Identify key decision makers to whom to distribute the white paper,
and then distribute it.

4. Create a concise, consistent message that we can then communicate to
decision makers as well as other siblings and interested parties to
communicate to their legislators.

Research White Paper Working Group


1. We believe that siblings with and without disabilities should be in
all phases of research from conceptualization to dissemination.

2. We believe that research should be inclusive, representative of
diversity, and culturally competent.

3. We believe there is a place for both description and intervention
research, using the range of state of the art research methods.

4. We believe that research on outcomes for siblings with and without
disabilities is of interest.

5. We believe that research should address lifespan issues and critical
contexts for their families.

Action Steps:

1. To design a national Web portal that can be an archive for past and
ongoing sibling research, conference presentations, sibling conferences and
other events, legislative contacts and advocacy initiatives, Sibshops,
support groups and other information.

2. To write a template for a core paper that can be disseminated to
local newspapers.

3. Priorities for research: Aging, Transitions, Underrepresented

4. To write a paper for researchers that provides guidelines for state
of the art sibling research methodology.

5. To get a marketing consultant.

6. Create a set of research briefs to be disseminated about issues for
siblings, families, and policy makers.

Services and Supports White Paper Working Group


1. We believe that supporting siblings with and without disabilities
benefits the entire family and society as a whole.

2. We believe that siblings of individuals with disabilities need
information, opportunities to share, training, and opportunities for

3. We believe that siblings have a unique perspective due to our life
experience that should be valued and recognized.

4. We believe that siblings should be respected in their choice to be
lovingly involved at whatever level and whatever way they choose.

Action Steps:

1. Identify models that are serving siblings across the lifespan
(collect information on services that are out there and compile them in a
place people can use as a tangible resource).

2. Identify creative ways to expand existing models and develop new

3. Reach out to connect other siblings, care giving coalitions, and
other relevant groups.

4. Conference call in 3-4 weeks to follow up.

Since the Conference: Steering committee representatives have presented
summaries of the information to other interested groups, created listserv
methods of communication between members of the working groups, shared
photographs online, debriefed the conference with members of SibNet, and
provided follow up communication with important policy makers on Capitol
Hill and at the state and local levels.

Tamar Heller, Ph.D., and John Kramer, M.A.

1640 West Roosevelt Road, Room 538

Department of Disability & Human Development, College of Applied Health

University of Illinois at Chicago, Chicago, IL 60608

Funding for this project was provided through the Rehabilitation Research
and Training Center on Aging with Developmental Disabilities, National
Institute on Disability and Rehabilitation Research (Grant # H133B031134)

For more information on the Sibling Leadership Network visit the
Rehabilitation Research and Training Center on Aging with Developmental



for an online discussion group
for adult siblings of people with developmental disabilities

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