Adult Siblings of Individuals with Disabilities

Posted on by Kylie Muccilli

Adult brothers smiling with arms around each other

Sibling relationships are often the longest-lasting relationships that children form. Like all siblings, they may or may not develop close emotional relationships depending on individual differences and circumstances. Regardless, a child’s reaction to a sibling with a disability will have a lasting effect on siblings’ self-esteem and emotional development. 

General Well-Being of Siblings

According to reports from the National Adult Sibling study, overall, siblings of adults with disabilities are doing very well. Siblings report that, as a group, they spend a fair amount of time with, feel very affectionate and close to, and have benefited greatly from their brother/sister with disabilities. Most siblings report that their physical health is either very good or excellent. Only a small percentage of siblings report being or having been depressed or blue. 

What Concerns Adult Siblings?

Because science and self-determination have so successfully contributed to the lengthened lifespan of people with disabilities, many questions arise for siblings about what the future will hold.  Who will assist the sibling with a disability when the parents are no longer able to do so? Where will the brother or the sister with a disability live? How can typically developing siblings find their way through a maze of services that continually changes?

Get Involved and Be Prepared

When parents involve siblings in the practical everyday planning issues and in the futures planning process for the sibling with a disability, siblings have higher confidence levels and feel more prepared to face future challenges in their adult relationships with their brother or sister. While families might face complicated and challenging issues, siblings who have a brother or a sister with a disability often have well-developed coping skills and often are highly proficient in finding new and innovative service options. 

Planning for the Future

Ideally, planning for the future is a process in which all family members are involved. Planning ensures that families are prepared to handle adult transitions and are aware when and how services are provided. Adult transitions may include: transition from school services to adult services; moving out of the family home; aging issues, including health and health care; marriage and children; and grief issues, such as the loss of a parent.

To ensure preparedness, many families draft a “letter of intent.” While not a legal document, this letter can include information about family members and their preferences for the future as well as information on medical histories and behavioral strategies. The letter can serve as a “roadmap” to developing legal and financial arrangements. A letter of intent might include: 

  • Family history (traditions and stories)
  • Support network (friends and neighbors)
  • Medical history (doctors and medications)
  • Personal histories (capabilities and interests)
  • History of activities (education, jobs, social, and volunteer)
  • A list of what works (behavioral strategies and motivators)
  • Service options in your state (housing and independence)
  • Financial planning (estate and legal plans)

‣ VKC Resources

‣ Local and National Resources

‣ Adult Sibling Research

  • Hodapp, R.M., & Urbano, R.C. (2007). Adult siblings of individuals with Down syndrome: Findings from a largescale American survey. Journal of Intellectual Disabilities Research, 51, 1018-1029.
  • Hodapp, R.M., Urbano, R.C., & Burke, M.M. (2010).  Adult female and male siblings of persons with disabilities: Findings from a national survey. Intellectual and Developmental Disabilities, 48, 52-62.
  • Burke, M.M., Taylor, J.L., Urbano, R., Hodapp, R.M. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 117(1):33-47.

[October 2010]