SLN White Paper

To: Sibling Leadership Network (SLN) members and supporters

You are invited to the 2nd annual conference of the Sibling Leadership
Network on November 6th & 7th in Columbus, OH. For more information and to
register, visit <> .

We are excited to share the draft of the white paper (a white paper is a
report or guide that addresses an issue and possible solutions). This
document identifies who we are and what we are for. At the first conference
in 2007, the group identified three key areas to focus on and created
working groups for each: (1) policy and advocacy, (2) research, and (3)
services and supports. Designated representatives of these groups have been
developing the white papers since the last conference.

We ask you to review the full document of the white paper that is attached
and come to the conference prepared to discuss and give feedback. If you
are not able to attend the conference and want to send feedback, feel free
to email Katie at

This white paper provides a framework for the SLN and the work we will focus
on as a group. During the conference the white paper working groups will
finalize their action plan and begin to implement it. Below is a summary of
the principles and action steps for the three working groups:

Policy and Advocacy White Paper Working Group


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

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

* We believe that siblings have a unique and underrepresented voice in
advocacy for and with their brothers and sisters with disabilities.

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

* 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:

* 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.

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

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

* 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


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

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

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

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

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

Action Steps:

* 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.

* To write a template for a core paper that can be disseminated to local

* Prioritize research on: Aging, Transitions, and Underrepresented

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

* To get a marketing consultant.

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

Services and Supports White Paper Working Group


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

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

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

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

Action Steps:

* 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).

* Identify creative ways to expand existing models and develop new ones.

* Reach out to connect other siblings, caregiving coalitions, and other
relevant groups.

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


Katie Keiling

Community Support Coordinator

Institute on Disability and Human Development

University of Illinois at Chicago

1640 W. Roosevelt Rd, Rm#251B

Chicago, IL 60608

(312) 996-1002

(312) 413-0453 TTY

(312) 413-4098 Fax

This entry was posted in General. Bookmark the permalink.

Comments are closed.