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

Research & Surveys, Resources

Olivia Najdovski explains why and how the Special Olympics is researching the sibling experience.

Photo credit: Special Olympics International, Department of Global Youth Engagement

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

“The relationship between me and my brother, it’s strong…  our bond is strong.
Growing up, you have those people who underestimate you, but my brother
would stand up for me, so he is forever there… he is always protecting me.”
Sibling on her relationship with her brother, who has an intellectual disability.
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, more responsibility is placed on the families of people with disabilities due to school cancellation, care programs, and other extracurricular activities. The pandemic has directed attention towards these support needs 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.
The sibling relationship for people with intellectual disabilities (ID) are often the longest-standing family tie in a person’s life. Siblings often identify their sibling with ID as a big part of their life. Consequently, this can also mean 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 demonstrates a phenomenon coined disability by association. This term describes when someone experiences discrimination due to their connection to a person with a disability. This can lead siblings to feel 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. 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. 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. 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. 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. Ninety-three percent of athlete leaders report that Special Olympics has been helpful for them and their siblings. However, athlete leaders were not immune to challenges. Athlete leaders noted various challenges, the most common being negative attitudes towards disability in the community. They also communicated a desire for programming that facilitates sibling connection and collaboration. It was recommended that Special Olympics conduct inclusive athlete-sibling research on a larger scale to understand the perspectives of the broader athlete community. 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. 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 challenges. Furthermore, this research project reveals the need for further research exploring sibling relationships, particularly including the perspectives of individuals with ID.
Accessible infographics on sibling relationships, results of this study, and tips for inclusive research are available here.
Find this and more on our Sibling Research Corner.
Check out these related resources from the Special Olympics:

  • Tips for Inclusive Research: Tips to conduct research which meaningfully includes people with intellectual disabilities throughout the entire research process. – English
  • Sibling Experiences Research One-Pager: This guide presents findings from a study exploring the experiences of siblings of people with intellectual disabilities in Latin America, Africa, and Asia Pacific – English | Spanish
  • Sibling Relationships: The Current Literature: An overview of the experiences of siblings of people with intellectual disabilities based on findings from a literature review of the current research. – English
  • Sibling Relationships: Athlete Leader Perspectives: Results and recommendations from a survey and interviews with Special Olympics Athlete Leaders about their relationship with their siblings. – English

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