Sibling Leadership Network Testimony for Administration on Developmental Disabilities

Image of Katie Arnold, Chair of the SLN

On behalf of the national Sibling Leadership Network (SLN), I wish to share with ADD some information about the growing importance of siblings of people with disabilities. Siblings often play a key role in providing natural supports for people with disabilities throughout their life. Yet, navigating the disability service system and getting support for themselves as siblings can be difficult and overwhelming. Addressing the needs of siblings will lead to better outcomes for families and people with disabilities.

People with intellectual and developmental disabilities (I/DD) are living longer than ever before and most continue to reside at home with their parents into adulthood. This presents potentially formidable challenges to the current service systems, as many baby boomers will no longer be able to provide support in the coming years. Engaging siblings is an important part of the solution to this challenge. Siblings are uniquely qualified to take on some of the support roles of their parents, yet unlike their parents, they often do not have a lifetime of advocacy experience that mom and dad had.

There is a specific need for information on future planning and to start future planning as early as possible and include siblings at an early age. Future planning is critical because it helps start an important dialogue among families and helps break the planning process into manageable steps. Future planning programs should include both the siblings with and without disabilities in the entire process. In addition, in order to integrate future planning into pre-existing programs and services, research on the outcomes of future planning and effectiveness of different training models needs to be a priority.

The Sibling Leadership Network (SLN) is an organization created to support siblings of people with disabilities throughout the lifespan. We believe, like parents and self-advocates before us, that we represent a key and missing link in the community of supports for people with disabilities. Our mission 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. The SLN values the input of self-advocates and works collaboratively with the national Self-Advocates Becoming Empowered (SABE). Our network is growing. Currently there are six SLN state chapters (Illinois, New York, Oklahoma, Ohio, Tennessee, and Wisconsin) and the SLN has laid the groundwork to nurture and develop additional chapters throughout the country. We have provided technical assistance to emerging sibling organizations in the United States and internationally. Our network contains over 200 leaders of sibling groups, organizations, and those interested in starting up one. For more details visit the SLN website at www.siblingleadership.org.

The SLN developed a policy white paper entitled “The Sibling Leadership Network: Recommendations for Research, Advocacy, and Supports Relating to Siblings of People with Developmental Disabilities,” (Heller et al., 2008) which articulates key recommendations that provide a road map for addressing the concerns and support needs of siblings. The recommendations include:

  • The term “family” should specifically include siblings. Currently family support policy does not include siblings. The SLN “believe[s] it is time to strengthen family support policy by explicitly including brothers and sisters of people with disabilities in federal family support program guidelines” (Heller et al., 2008, p. 13). The SLN is advocating for the specific inclusion of siblings in the definition of family upon the reauthorization of the DD Act.
  • The Developmental Disabilities network programs need to include siblings. The SLN requests that state Developmental Disability Councils reserve at least one seat for siblings of people with developmental disabilities and that language in their state plans include siblings. University Centers for Excellence in Developmental Disabilities need to include siblings in the development and submission of grants. State Protection and Advocacy Systems need to include siblings on their Board and Advisory Panel. Lastly, involvement of siblings needs to be evaluated with specific outcome measures directed toward siblings.
  • The Administration on Developmental Disabilities needs to create programs that reach out, inform, and involve siblings of people with disabilities at all ages and stages. We suggest the development of specialized programs to support siblings at all life stages along with including siblings in family trainings; research and grant activities; access to information about available services and supports; respite worker and volunteer training and recruitment; and futures planning.

The SLN believes that engaging siblings of people with disabilities through policy and practice represents a low cost, high impact way of improving outcomes for people with disabilities and families.

The national Sibling Leadership Network hopes that ADD will include siblings of people with disabilities in their advocacy and policy work so that siblings can be at the policy table to share their perspective and improve the lives of their brothers and sisters with developmental disabilities and their entire families

Sincerely,

Katie Arnold

Chair, Sibling Leadership Network

www.siblingleadership.org

Citations:

Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J., & Dufresne, D. (2008). The Sibling Leadership Network: Recommendations for research, advocacy, and supports relating to siblings of people with developmental disabilities. Rehabilitation Research and Training Center on Aging with Developmental Disabilities: Lifespan Health and Function, University of Illinois at Chicago.

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