Family Matters: IDD & Sibling Support

By Haley LaRose

As a second generation sibling of individuals with IDD, I know firsthand how critical sibling support is. I grew up with a nonverbal autistic brother and an uncle with cerebral palsy, finding myself immersed in the world of IDD. Being lucky enough to have a mother who also has a sibling with IDD, she fought to make sure both my brother and I had the support we needed. Due to her efforts, I feel prepared to aid in my brother’s care however needed as well as secure a network of support for myself. However, this is not always the case for siblings of individuals with IDD. They may feel isolated or ignored, and resentment can build without proper communication. Further, many siblings are in the unique position of taking over care for their siblings as their parents age, a role they likely feel unprepared for when they are kept out of conversations regarding their siblings. Being a sibling to someone with an IDD is an often forgotten experience in the world of disabilities, however in many situations is the most critical relationship in an individual’s life. 

Statistics

Most research about siblings of individuals with IDD is focused on younger age groups rather than older. Studies have found that in early childhood, having a sibling with IDD can lead to increased empathy and kindness [1]. The effect of their sibling is otherwise generally negligible. However, as children age, jealousy and embarrassment may begin to grow. They are faced with the judgement of their peers or may feel envious of the increased attention their sibling receives. 89% of siblings report their peers do not accept their sibling with IDD, often leaving them socially isolated [1]. Many siblings also report feeling neglected by their parents as their sibling may require more intense care, furthering these negative feelings [2]. However, this negativity often peaks in adolescence, with many adult siblings taking on leading roles in their sibling’s life. 50% of siblings even report feeling guilty for not spending enough time with their sibling and wish they could have a stronger relationship [1].

Siblings play many roles in an individual's life, making them one of the most impactful relationships. They may act as caretakers, protectors, playmates, advocates, or teachers. However, the most common role for siblings of individuals with IDD to take on is the caretaker. Over 80% of siblings report being the most responsible for their sibling’s future. Further, 87% of adult siblings act as their sibling’s primary caregiver [1]. However, many siblings feel unsupported in this role. Some siblings report feeling excluded from conversations about their sibling’s future, with 53% of siblings stating they wish they knew more about their sibling’s disability [2]. Many adult siblings are also a part of the “club sandwich” generation, where they are responsible for the care of their aging parents, sibling with IDD, and in many cases their own children [1]. As siblings age, they are increasingly involved in their sibling’s care, often without any additional support. While 80% of caretaking siblings have reported needing support from disability service centers, just 25% have reported receiving it [1]. 

These trends are why it is critical to improve resources not only for individuals with IDD, but also for their siblings. When siblings are facing a lack of support from all sides, this can lead to extreme stress and lower the quality of care their sibling is receiving. To be the best support system for their sibling, they must first find a support system for themselves. Luckily, there is an increasing number of programs for siblings of individuals with IDD to connect and find support. While the list is still small, forming a community is a critical first step in closing the sibling resource gap.

Best Buddies

Best Buddies is an international organization that offers programs for siblings of individuals with IDD to connect with one another and find support. Peers often struggle to understand the reality of being a sibling to someone with IDD, which can cause feelings of isolation or loneliness. 43% of siblings wish they knew more siblings of individuals with IDD [2]. Best Buddies aims to bridge that gap by connecting siblings to one another [3]. They offer programs for two age groups: 9-13 and 14 -18. The 9-13 age group has more limited programming with in person socials in certain cities and 1:1 matching. For the 14-18 age group, these programs are expanded to include virtual socials, access to the Best Buddies Siblings Community App, and small group mentorship pods [3]. The virtual and in person socials allow siblings to connect with other siblings who have similar lived experiences. The 1:1 matching program provides a more intimate connection, having siblings fill out an application and matching similar ages and interests in either virtual or in person pairs [3]. 

The Best Buddies program works to reduce the emotional burden of being a sibling to an individual with IDD by lowering pressure, decreasing isolation, and increasing understanding of various IDD [3]. All participants must first fill out an application and adhere to a code of conduct to ensure safety, and all activities are actively monitored by Best Buddies. Best Buddies is available in all states, whether in person or virtual, and in 47 countries across 5 continents. Interested siblings can find available programs in their state or country on the Best Buddies website.

The Arc

While the Arc is often known as a resource for individuals with IDD, they also have helpful information for their siblings. They have both an informative page on future planning for siblings and on how to get involved with the Arc’s resources. Their future planning page focuses on general tips for navigating the topic. They emphasize siblings should feel comfortable taking whatever role they feel is best for them to take, whether that is being a caretaker, and advocate, or just being there. The Arc acknowledges many siblings may feel left out of the conversation about their sibling’s future and has a resource for how to start discussing this issue with their parents, as well as a list of tips on how to support their sibling and get started with future planning [4]. The page also directs visitors to a webinar on future planning and additional resources, including how best to document their future plan.

The Arc’s page on general resources provides a much more broad overview for siblings. They direct siblings to four options: supporting the Arc’s grassroots advocacy, connecting with their local Arc chapter, accessing their e-newsletter, and outsourcing to other supportive resources. Their grassroots advocacy section focuses mainly on talking to Members of Congress about disability issues such as protecting IDEA and the ADA, however they also provide an option for siblings to join the national Sibling Council to further collaborate with siblings on advocacy work [5]. The local chapter section is very simple, listing the variety of programs the Arc offers and providing a database to help siblings find their closest chapter.  Their e-newsletter is called the Sibling Scene, and is a resource geared specifically towards siblings of individuals with IDD. It is accessible through their resource database, along with other resources on financial planning, self-advocacy, and other critical topics for siblings [5]. Finally, the Arc directs siblings to two additional organizations that specialize in sibling support: The Sibling Support Project and the Sibling Leadership Network.

Sibling Support Project

The Sibling Support Project is the first national organization focused on supporting the siblings of individuals with IDD and mental health concerns [6].The Sibling Support Project offers four main resources: Sibshops, online communities, academic publications, and workshops and trainings. Sibshops are the most common methodology for supporting sibling needs and are popular across the United States [1]. They are workshops for siblings aged 8-13 where they can meet other kids having a similar experience to them. At Sibshops, siblings can bond with each other, play games, and learn about their siblings’ disabilities. Sibshops are focused on wellness and celebration to give siblings a place where they are always understood [6]. There are Sibshops across the United States, as well as in South America and Europe. Interested siblings can find their closest Sibshops using the map on the Sibling Support Project’s website.

While Sibshops are the Sibling Support Project’s largest program, they also offer many online communities for siblings. SibTeen is a closed Facebook group for teenage siblings to connect with one another across the world, allowing a private space to discuss their unique concerns with those with similar experiences [7]. They similarly offer Sib20 and SibNet, with Sib20 focusing on young adult siblings and SibNet being geared towards all adults [7]. By providing private spaces for siblings to communicate with one another, the Sibling Support Project is taking a critical step towards the improvement of resources for siblings of individuals with IDD. They are also a partner and frequent collaborator of the Sibling Leadership Network, another organization that works to empower siblings.

Sibling Leadership Network

The Sibling Leadership Network (SLN) aims to build a community of support and resources for siblings of individuals with IDD [7]. They believe siblings are in a unique position to both have a positive impact on their sibling’s life and disability rights due to their lived experience. SLN emphasizes the many relationships who may find comfort in their organization, including siblings, sibling supporters such as parents, those with sibling-like relationships such as close friends, or “sibs-in-law” who date and marry siblings [7]. Siblings can get involved by joining the SLN mailing list, becoming a member of SLN, or connecting with their state chapter. While SLN provides many national resources, including collaborating with the Sibling Support Project on SibNet, many SLN state chapters may have resources focused on specific state issues. 

One of the many resources SLN offers is their media library, which hosts their SLN podcast and Sib Stories. The SLN podcast offers perspectives on a variety of struggles siblings may experience, from future planning to navigating dating and marriage. Sib Stories is similar, offering both written and audio stories from siblings and their advice to those like them [7]. SLN also offers more connection-based resources. In addition to collaborating on SibNet, they offer SibThrive, a virtual cohort for siblings to learn skills such as story sharing, boundary setting, and community building. The program costs $500 to complete, however interested individuals can reach out for financial support. SibThrive includes six 90 minute virtual sessions with 8-10 other siblings, two 1:1 coaching sessions, and a companion workbook [7]. Interested siblings can fill out the interest form on the SLN website. SLN also offers resource guides for young siblings, teens, young adults, and adults, directing them to the online communities and Sibshops offered by the Sibling Support Project [7]. The SLN is another critical organization bridging the resource gap for siblings of individuals with IDD.

Conclusion

As a sibling myself, I understand the unique struggles siblings of individuals with IDD face everyday. They are forced to balance roles as caretakers, playmates, advocates, and just being a sibling. Unfortunately, this can often lead to isolation, leaving siblings feeling like there is no one to talk to. While the realm of sibling support is still a growing realm, there are a few organizations working to lead the charge. When siblings are able to connect with those with similar experiences and find information on how to balance their responsibilities, they are better able to show up for their siblings and for themselves. These organizations are critical to the realm of intellectual and developmental disabilities, and I am excited to see our sibling support community continue to grow.

Sources

[1] Burke, M., & Lee, C. (2020). Impact feature issue on siblings of People with intellectual, developmental, and other disabilities | volume 32, number 2 | siblings of people with IDD: A look across the lifespan. In publications.ici.umn.edu. https://publications.ici.umn.edu/impact/32-2/siblings-of-people-with-idd

[2] Neff, G., Alexandra, M., Fonte, Da, Hodapp, M., Burke, & Stock, A. (2022). Understanding the needs of siblings of individuals with disabilities: Their perspectives, a research report for families and community partners. https://vkc.vumc.org/assets/files/resources/dafontereport.pdf

[3] Best buddies siblings program - best buddies international. (2026, February 20). Best Buddies International. https://www.bestbuddies.org/family-support/siblings/

[4] Future planning guide for Siblings of People with IDD - the arc’s center for Future planning. (2026b). In The Arc’s Center for Future Planning. https://futureplanning.thearc.org/planning-basics/siblings/

[5] Siblings of People with intellectual & developmental disabilities. (n.d.). In The Arc. https://thearc.org/get-involved/siblings/

[6] Nguyen, H.-D. (2024). Homepage. In Sibling Support Project. https://siblingsupport.org/

[7] Sibling leadership network | siblings of people with disabilities. (n.d.-a). In Sibling Leadership Network. Retrieved July 26, 2026, from https://siblingleadership.org/