Building Belonging: The Need for Resources for Siblings of Individuals with Intellectual Disabilities

Olivia Najdovski is a 2020 Social Connectedness Fellow working with Special Olympics International to better understand the sibling experience of athletes with intellectual disabilities. Olivia is passionate about research and its applications to develop solutions for complex, real-world issues.

There are many positive experiences that come with having a family member with a disability, but families can also face significant challenges. Families may experience financial strain and family tensions resulting from a lack of social support. Moreover, during COVID-19, significantly more responsibility is placed on the families of people with disabilities because of the cancellation of schools, care programs, and other extracurricular activities. The pandemic has directed attention toward this lack of support and more resources have been established as a result. Despite this, most family support has been directed toward parents of people with disabilities. Siblings of individuals with disabilities are largely ignored.

Siblings of people with intellectual disabilities (ID) are often the longest-standing family ties in a person’s life. Overall, siblings without ID describe having positive relationships with their sibling with ID. Siblings often identify their sibling with ID as a big part of their life. Unfortunately, this also means that siblings of people with ID face a variety of distinct challenges. 

Siblings of people with ID are more likely than siblings of people without disabilities to struggle with their emotional and mental health. Research on siblings demonstrates a phenomenon coined disability by association. This term is used to describe when someone experiences discrimination due to their connection to a person with a disability. This can lead siblings to feel different from their peers and that they don’t belong. It is important to note that terms like these are intended to emphasize how attitudes and systems relating to disability within societies impact families of individuals with disabilities and do not suggest that disability itself is the causal factor of negative outcomes for families of individuals with disabilities. Furthermore, siblings of individuals with an ID are more likely to have poor mental health outcomes, including increased levels of depression and anxiety and lower levels of life satisfaction.

Additionally, siblings of individuals with ID may be responsible for some or all caregiving throughout childhood and into adulthood. Siblings report difficulty transitioning and adapting to the primary caregiving role for their siblings with ID. Often, decisions to provide care are associated with feelings of guilt and resentment. In addition, siblings may struggle with competing relationships with their friends, partners, and other family members, which can add extra strain to relationships.

Considering these challenges, there is a need for more support and resources for siblings of people with ID. Resources have proven to be beneficial for siblings. For example, support groups have shown to be helpful for siblings of people with ID. These groups bring siblings of ID together in a safe space where they can speak openly about their experiences, thoughts, and feelings with peers with similar experiences. Some groups focus on discussing disability while others allow for free discussion. After attending support groups, siblings report feelings of connectedness and empowerment, decreased anxiety and depression, and an increased drive to create systemic change.

Siblings have an expressed desire for supports and services that provide a way to connect with other siblings like themselves. Siblings also want to see efforts to change their community’s attitudes towards disability. In line with the social model of disability, what makes someone disabled is not their medical condition, but the attitudes and structures of society. 

In response to siblings’ need for more support, Special Olympics launched their Sibling Engagement Initiative in 2018 in partnership with The Samuel Family Foundation. This initiative seeks to support siblings of people with ID and provide them with an opportunity to develop as leaders and advocates for inclusion. As part of this initiative, Special Olympics is conducting research to better understand sibling relationships between people with ID and their siblings without ID from the perspective of Special Olympics athletes. This is an inclusive research project, meaning that people with ID are involved in the development and implementation of the research. 

Surveys and interviews were conducted to understand the perspectives of Special Olympics athlete leaders and their siblings. Overall, athlete leaders reported strong, positive relationships with their siblings. This is in contrast to some literature on siblings of individuals with ID, which suggest siblings with differing abilities may experience lesser quality relationships. One explanation for this could be that athlete leaders already receive support from Special Olympics. Additionally, many siblings of athlete leaders report being advocates for inclusion in their community, which may also contribute to their positive relationships. 

However, these siblings were not immune to challenges. Athlete leaders noted various challenges that they face, the most common being negative attitudes towards disability in the community. They also communicated a desire for programming that facilitates sibling connection and collaboration. Additionally, a variety of supports and services for siblings of athletes were recommended, including an international sibling network, support groups, educational programming, and resources targeted toward siblings of athletes.

Overall, this research project demonstrates the need for resources for siblings of individuals with ID. Despite strong, positive relationships with their siblings with ID, siblings face a variety of unique challenges like disability by association and poor mental health outcomes. Many of these challenges are a byproduct of the negative attitudes and stigma surrounding disability in the community. In addition to programming targeted towards families, supports and services specifically for siblings of individuals with ID are necessary to address these unique challenges. Furthermore, this research project reveals the need for further research exploring these sibling relationships, particularly including the perspectives of individuals with ID. 

The full report on athlete-sibling relationships, along with accessible infographics and tips for inclusive research, is available here.