Support and advocacy: The role of siblings of individuals with disabilities

April 10th, 2016 was National Sibling Day.  The relationship between siblings can play a very important role in the lives of individuals with disabilities—particularly those with intellectual and developmental disabilities—through support and advocacy.  Founded in 2007, the Sibling Leadership Network (SLN) promotes a wide-ranging network for individuals who share concerns about social, emotional, governmental, and provisional supports across lifespan for their siblings with disabilities. SLN provides information, supports, and tools to help siblings advocate with their brothers and sisters with a disability.

When visiting the SLN website one can find information on policy and advocacy including:  The annual Disability Policy Seminar, new home and community-based services rules (regulation), Sibling Advocacy Toolkit product created as a result of the Sibling Policy Forums, and the SLN policy and advocacy committee which produced the 2015 SLN Sibling Policy Brief and SLN White Paper in collaboration with the NIDILRR-funded RRTC on Aging with Developmental Disabilities.  Additionally SLN provides advocates with information such as the SLN Adult Siblings Research Brief and the SLN Young Siblings Research Brief with the goal to increase visibility and accessibility of sibling research while increasing awareness about including siblings in research about individuals with disabilities and their families.  SLN also works to increase awareness of services and supports for siblings of people with disabilities across lifespan through their Support and Information Committee.  The Committee advocates for increasing and enhancing services and supports for siblings of people with disabilities as well as compiling and disseminating information on current services and supports that include and target siblings.  These resources are listed by age group:  young, teen/young adult, and adult siblings.  Information and resources are also available for parents and family members including a listserv, SibParent, sponsored by the Sibling Support Project.  Finally, SLN promotes self-advocacy including the National Gateway for Self-Determination and provides national advocacy resources.

SLN has collaborated with NIDILRR-funded projects to conduct research on the importance of the sibling relationship for families supporting people with intellectual or developmental disabilities, including the Rehabilitation Research and Training Center (RRTC) on Family Support and the Rehabilitation Research and Training Center on Developmental Disabilities and Health.  A search of our database, REHABDATA on siblings, advocacy, and supports returned a sampling of documents:

Agosta, J., Heller, T., Hewitt, A., Reinke, J., & Williams, A.C.  (2013).  Families of individuals with intellectual and developmental disabilities: Policy, funding, services, and experiences.   Intellectual and Developmental Disabilities – IDD (formerly Mental Retardation), 51(5), 349-359.
NARIC Accession Number: J67764
Project Number: H133B080005
Available in full-text at:  http://aaiddjournals.org/doi/pdf/10.1352/1934-9556-51.5.349.

Arnold, K.  (2012).  The sibling leadership network: Promoting self-determination through sibling advocacy.   National Gateway to Self-Determination: Research to Practice in Self-Determination Series. Issue 4: Family Focus on Self-Determination, 21-22.
NARIC Accession Number: O19336
Project Number: H133B080009
Available in full-text at:  http://search.naric.com/research/rehab/download.cfm?ID=123907.

Arnold, K.K. (2010).  Siblings of people with disabilities: The next generation of supporters.   Golden Years, 2-5.
NARIC Accession Number: O18371
Project Number: H133B080009
Available in full-text at:  http://search.naric.com/research/rehab/download.cfm?ID=117786.

Dufresne, D., Fish, T., Heller, T., Kaiser, A., Kramer, J., & Meyer, D.  (2008).  The sibling leadership network: Recommendations for research, advocacy, and supports relating to siblings of people with developmental disabilities.
NARIC Accession Number: O17909
Project Number: H133B080009
Available in full-text at:  http://search.naric.com/research/rehab/download.cfm?ID=114190.

View more REHABDATA documents related to siblings at:  http://tinyurl.com/ze2hhl4.

Are you the brother or sister of a person with a disability? How did you celebrate National Siblings Day? Tell us in the comments section below!

 

 

 

 

About cgraves34

Media Specialist for the National Rehabilitation Information Center (NARIC) funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) through Administration for Community Living (ACL) under the U.S. Department of Health and Human Services (HHS).
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2 Responses to Support and advocacy: The role of siblings of individuals with disabilities

  1. Pingback: Making Your Way in the World – Resources for Young People with DS and Their Families | Collection Spotlight from the National Rehabilitation Information Center

  2. Pingback: Haciendo su camino en el mundo – Recursos para las personas jóvenes con síndrome de Down y sus familias | Collection Spotlight from the National Rehabilitation Information Center

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