Siblings often have the longest-lasting relationships of their lives with each other. With this lifelong connection, siblings have a great opportunity to support each other. In families where a person has a disability, the roles that siblings play may be different – not only in childhood and adolescence, but also in adulthood. With these different roles, there are also different needs. As parents age and are less able to provide support to their child with a disability, siblings’ roles will increase, and siblings often anticipate taking on a greater support role in the future. Although siblings expect to be involved in future roles, many families are not engaging in future planning and siblings are often not included in conversations about the future (Burke, Arnold, & Owen, 2018). Additionally, siblings have not traditionally been involved with peer support opportunities so as they enter adulthood, they often find that they are searching for opportunities to connect with other siblings that they can turn to for collaboration and information.
The needs of siblings of people with disabilities are complex, varied, and change over time. Two common areas of need for adult siblings include: information about future planning and peer support. These are two of the areas that adult siblings often talk about the most when they connect with the Sibling Leadership Network (Arnold, Heller, Kramer, 2012; Halm & Arnold, 2017). The Sibling Leadership Network (SLN) is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and promote the issues important to them. Find out more about the SLN at www.siblingleadership.org.
The term “sandwich generation” is often used to refer to adults with aging parents who are juggling care for their parents and raising their own children. Siblings of people with disabilities often refer to themselves as being part of the “Club Sandwich Generation”(similar to a large club sandwich with many layers) because they have an extra layer of providing care for a sibling with disabilities which often compounds their caregiving roles (Hodapp, Sanderson, Meskis, & Casale, 2017). Through adulthood there are increasing questions about living arrangements, career transitions, finances, and caregiving roles. Siblings need time and space to discuss and process these conversations both within their family and possibly with other people outside the family.
Adult siblings often have questions and concerns that they have been considering over their lifetime. These questions typically revolve around wondering what will happen to their own life and the lives of their siblings when their parents are no longer present or unable to care for their siblings. Siblings might be wondering: “Will my sibling live with me?” and “Will I become my sibling’s primary caregiver?” Of course, there aren’t universal answers to these questions. Families are well-served to have ongoing conversations about future planning that involve parents, children, siblings and extended family members. It is important that the person with the disability be consulted about what role she or he wants their siblings to play. These should be continuing conversations that families have throughout life, with recognition that roles may evolve and change.
There are many obstacles to family future planning, including financial barriers and lack of available services (Burke, Arnold, & Owen, 2018). It can also be uncomfortable for family members to focus their conversations about the future because it requires an acknowledgement of mortality. Parents may worry that this is hard information for siblings to process, but siblings are often relieved to have an opportunity to talk, learn, and have input into the process.
Future Planning Resources
The Arc’s Center for Future Planning provides a Tip Sheet for Siblings: Getting the Future Planning Conversation Started. Additionally, they offer an online tool called Build Your Plan that allows family members to work through a future planning process collaboratively, think about various areas of planning, and create a written record.
The Future is Now is an evidence-based curriculum created by the University of Illinois at Chicago’s Rehabilitation Research and Training Center on Developmental Disabilities that has been shown to have positive outcomes for families (Factor, DeBrine, Caldwell, Arnold, Kramer, Nelis, & Heller, 2010). It helps families start talking and planning for the future in a person-centered and family-centered manner. The curriculum is specifically designed to include people with disabilities as part of the process, along with siblings, parents, and anyone the person with disabilities wants to include. Organizations can purchase the curriculum and receive a train-the-trainer training so they can implement “The Future is Now” with families they serve.
Parents of people with disabilities often find peer support early when they connect with other parents of children with disabilities. Health providers and educators help new parents make connections with other parents because they recognize that parent peers will provide information, friendship, support, and resources. However, those same opportunities for peer support are not as readily available for siblings. Thankfully, The Sibling Support Project created “Sibshops” to provide peer support groups where young siblings of people with disabilities to talk about their thoughts, feelings, and concerns in a recreational setting. As Sibshops grow and expand, siblings will increasingly have opportunities to connect at an earlier age.
Peer support is also promoted through the national Sibling Leadership Network where adult sibling can connect online and in person through events such as conferences, workshops, and seminars. It is a common occurrence to hear adult siblings come to an SLN meeting and share with emotion that it is the first time they are experiencing having a meaningful conversation with another sibling. This can be a powerful experience because they feel validated and realize they are not alone. They have lived for decades without actually having a connection with another sibling of a person with a disability! Peers can help siblings navigate family dynamics, provide resources, and offer insights about their current and future roles with their brothers and sisters with disabilities.
Resources for Sibling Support
The Sibling Leadership Network has state chapters in 27 states that hold regular meetings with adult siblings.
There are also a number of online, interactive closed communities for siblings to connect with each other for information and peers support. Hosted by the Sibling Support Project, these groups serve as front-line resources for sibs, by sibs. Adult siblings can look on Facebook to request to be added to a group.
- Sib20 for siblings in their 20s – facebook.com/groups/Sib20/
- SibNet on Facebook for adult siblings of people with disabilities – facebook.com/groups/SibNet/
Amy Halm, MSW, LCSW, is Associate Director at the Sibling Leadership Network.
Arnold, C. K., Heller, T., & Kramer, J. (2012). Support needs of siblings of people with developmental disabilities. Intellectual and Developmental Disabilities, 50(5), 373-382.
Burke, M. M., Arnold, C. K., & Owen, A. L. (2018). Identifying the correlates and barriers of future planning among parents of individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 56, 90–100. Retrieved from https://doi.org/10.1352/1934-9556-56.2.90
Factor, A., DeBrine, E., Caldwell, J., Arnold, K., Kramer, J., Nelis, T., & Heller, T. (2010). The Future is Now: A future planning training curriculum for families and their adult relative with developmental disabilities (3rd ed.). Chicago, IL: Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.
Halm, A. & Arnold, K. (2017). Sibling needs across the life course. Chicago, IL: Sibling Leadership Network.
Hodapp, R. M., Sanderson, K. A., Meskis, S. A., & Casale, E. G. (2017). Adult siblings of persons with intellectual disabilities: Past, present, and future. International Review of Research in Developmental Disabilities, 53, 163–202.