Program Profile

Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Grassroots Support in States: The Sibling Leadership Network

Author(s)

Katie Arnold is Executive Director of the Sibling Leadership Network based in Chicago, Illinois. She also is Director of Community Education for the Institute on Disability and Human Development at the University of Illinois at Chicago. She may be reached at katie.arnold@siblingleadership.org.

The Sibling Leadership Network (SLN) is a national nonprofit organization with state chapters dedicated to providing information and support for siblings of people with disabilities across the lifespan. Founded in 2007, the SLN was created by siblings out of a need to increase the support for siblings of people with disabilities through social networks, education, research, policy and advocacy. The SLN has a network of over 6,000 members from across the country, including a dedicated core of volunteer leaders from 30 states.

Currently, there are 27 state chapters of the SLN and additional chapters are being nurtured throughout the country. Chapters are the grassroots of the organization and maintain more personal contact with people, ensuring that they obtain the information and support they need. The vision is that eventually every state will have a chapter. If your state has a chapter, get connected and learn how you can get involved. If your state does not have a chapter, consider starting a chapter to help grow sibling support in your state. 

A group of more than 50 participants at a 2019 Sibling Leadership Network conference stand in rows for a posed photograph. Front-row participants kneel or sit crossed-legged, one holds an infant. Everyone is smiling.

Participants at the 2019 Sibling Leadership Network Conference.

The SLN has three main areas of focus, often referred to as the three legs on the stool that hold the SLN up:

  1. Research: The SLN is advocating for more and better research on the sibling experience and is working to get research into the hands of siblings and sibling supporters so they can advocate for their needs.
  2. 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. 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 and the organization is involved in national family support initiatives. Additionally, the SLN held Sibling Policy Forums and developed an advocacy toolkit to help siblings share their stories to effect change. The SLN is building a passionate and informed community of advocates for better policies for people with disabilities and their families. 
  3. Support and Information: Presentations and trainings about sibling support 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 at state chapter conferences and events. Sibshops are hosted by a number of SLN chapters to provide a fun space for young siblings to meet one another and receive information and peer support in a highly recreational setting. SibNet is the largest online community for adult brothers and sisters of people with disabilities from around the world to connect with each other, with over 4,500 members on Facebook. The Sibling Survival Guide is a book edited by the Sibling Support Project with many contributions from SLN members. The book provides detailed information, resources, and strategies to navigate the journey as a sibling. The SLN website has a wealth of information and resources for people to use across the lifespan. Finally, SLN focuses on getting siblings connected to information and peer support throughout their lives as their needs change. It has national, state, and local events. SLN holds our national conference every other year, so the next one will be June 19-20, 2021, in Jacksonville, Florida, in conjunction with the American Association on Intellectual and Developmental Disabilities conference.

By joining the network you will become connected to the larger sibling movement happening across the country, and help strengthen the sibling voice.

There has been a growing awareness of the unique perspective and needs of siblings of people with IDD across the lifespan. The SLN has been working to build momentum of the sibling movement across the country. One of the hallmarks of the SLN is to listen to and learn from self-advocates in the movement. People with disabilities are an important part of the SLN Board leadership and Committees ensuring their sibling perspective is included in all its work.

The SLN is primarily a volunteer organization with a dedicated group from across the country helping to build and grow the network. You are welcome to join the SLN. It is free and easy to sign up at www.siblingleadership.org. You don’t have to be a sibling to get involved—sibling supporters are anyone who supports siblings, including parents and other family members, professionals, friends and colleagues of sibs. By joining the network you will become connected to the larger sibling movement happening across the country, and help strengthen the sibling voice so together we can effect even more change.