EXPERT UPDATE: Supporting Siblings of People with Disabilities
The sibling relationship is the longest relationship of most people’s lives and the peer nature of our relationships make us well-suited to support the self-determination of our brothers and sisters with disabilities.
Siblings play an important role in the lives of those with developmental disabilities, yet our perspective is often overlooked. There has been a growing awareness of the unique perspective and needs of siblings across the lifespan. The Sibling Leadership Network (SLN) has been working to build momentum of the sibling movement across the country.
One of the hallmarks of the SLN is that we are listening to and learning from self-advocates in the movement. People with disabilities are an important part of our SLN Board leadership and Committees ensuring their sibling perspective is included in all our work.
The SLN focuses on three areas:
1. Support and Information: Presentations and trainings on siblings have reached audiences across the country to increase awareness of the importance of supporting siblings. Peer support and information sharing happens at the SLN’s national conference as well as state chapter conferences and events. Sibshops are hosted by a number of SLN chapters to provide a fun space for young siblings to gather and get information while playing together. SibNet is the largest online community for adult siblings of people with disabilities from around the world to connect with each other. The Sibling Survival Guide was developed by SLN members and provides detailed information, resources and strategies to navigate the journey as a sibling. The SLN website also has a wealth of information for people to use across the lifespan.
2. Research: The SLN is advocating for more and better research on the sibling experience and is working to get it into the hands of siblings and sibling supporters so they can advocate for their needs. A National Sibling Survey was recently conducted to better understand the needs and experiences of siblings from their perspective as well as their siblings with disabilities, parents and professionals. Check out the SLN’s Research Briefs on the SLN website which highlight research related to siblings.
3. Policy and Advocacy: The SLN is also working to get the sibling voice at the policy table and is advocating for policies that ensure the definition of family includes siblings. A Sibling Policy Brief has been created by the SLN that highlights key legislation and its relevance to siblings. SLN members have been active at the annual Disability Policy Seminar. Additionally, the SLN held Sibling Policy Forums and developed an Advocacy Toolkit to help siblings share their stories to effect change.
Founded in 2007, the SLN is a national nonprofit with state chapters dedicated to providing 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. We invite everyone who is invested in better outcomes for families to join the SLN – it is free and easy to sign up at http://www.siblingleadership.org
Katie Arnold is the executive director of the Sibling Leadership Network (SLN) as well as the director of community education for the Institute on Disability and Human Development. The passion for her work stems from growing up with her sister with intellectual disabilities.
Read more from the winter 2016 edition of Making A Difference:
