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The Arc Announces Major Initiatives for Siblings of People With Intellectual and Developmental Disabilities

Washington, DC – The Arc of the United States is building on the foundation of the organization, founded by families over 60 years ago, by announcing two major initiatives for siblings of people with intellectual and developmental disabilities (IDD) – a new partnership with the national Sibling Leadership Network (SLN), and the formation of The Arc’s National Sibling Council.

The leadership and active involvement of siblings is critical to ensuring the full inclusion and participation of their loved ones in all aspects of community life. These exciting new initiatives seek to connect siblings as an important segment of the disability movement to impact policy, service delivery, and the quality of life for the millions of Americans with IDD. The Arc’s new sibling initiatives will also provide the necessary support to siblings who are looking for resources and answers to questions unique to them and their family’s future.

“Families, including siblings, built The Arc into what it is today, and these initiatives build upon their decades-long work in the disability movement. Siblings don’t always recognize their own unique ability to impact their loved one’s life, and the lives of millions of other siblings just like them across the country, just by banding together, supporting each other, and speaking up,” said Peter V. Berns, Chief Executive Officer of The Arc.

Berns added: “There is a tremendous opportunity in communities throughout the country to harness the power of siblings as advocates, working hand-in-hand with their brothers and sisters with IDD, as a force for change. Siblings are a critical part of the movement to protect the rights of people with IDD to be included in society.”

Founded in 2007, the mission of the SLN is to provide 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. Under this new partnership, the two organizations will develop and offer dedicated programming for siblings at The Arc’s National Convention and other events, including distance learning based programs on topics of interest to siblings, volunteers and professionals of The Arc on sibling issues. They will also create networking opportunities for siblings using social media tools, support the development of sibling services at state and local chapters of The Arc, and work to establish state and local chapters of the SLN.

“Siblings represent the longest lasting relationship many experience. As we age, siblings who were once rivals grow closer and we come to rely on each other for essential support, particularly as parents age. Through our partnership with The Arc, we believe that we can make a difference in the long term natural supports of people with disabilities by providing their brothers and sisters the information they need through welcoming communities. By getting siblings involved in the game earlier and more often, we think it can allow siblings and people with disabilities to have more control over the involvement of family in support across the lifespan,” said John Kramer, Sibling and Chair of The Sibling Leadership Network.

Born out of this partnership will be the creation of The Arc’s National Sibling Council. This new initiative of The Arc will offer opportunities for networking and support to siblings and their families, build a broad network of siblings that support the advocacy and programmatic efforts of The Arc at all levels, offer leadership development and training through involvement in standing and ad hoc committees and task forces of The Arc, and provide face-to-face and online networking and social opportunities. In addition, The Council will be a place that siblings of individuals with IDD that may be new to or overwhelmed by their role can turn to when they need guidance or support in situations unique to their family.

The Arc’s National Sibling Council welcomes all siblings and those who support siblings who are members of The Arc either at the local, state or national level. Those interested in becoming Contributors to the Council, by donating additional funds, will ensure the establishment and sustainability of this essential new program.

“Being a sibling of a person with IDD is interesting, funny, frustrating, proud, challenging, loving and respectful. Growing up with my sister Martha, I could usually convince my parents to let her try something they were worried that she could not do by telling them that I would do it with her. How amazing it would have been to hear another sibling’s stories – to learn how to manage something differently, to share anger, to boast of an achievement that to my friends might seem trivial, but another sibling ‘knows’ the triumph. The Sibling Leadership Network and The Arc’s National Sibling Council are welcoming networks that identify with siblings, help them connect with information and with other siblings, and learn how to partner and to advocate,” said Nancy Webster, Vice President of the National Board of The Arc of the United States and a sibling of a sister with IDD.