Alert
Alert
Alert

Tip Sheet for Adult Siblings of Persons with Disabilities

Author-Avatar Amy Parker

12/30/2016 3:53 AM

As I have been scanning the literature on people with disabilities and their siblings, I have been reading research about what you might intuit to be true, that the strength of the sibling relationship may be based on many factors. One such factor has to do with how parents may involve siblings without disabilities in the long term care planning for their brother/sister with complex needs. Siblings that were more involved in understanding systems of care for their siblings, were more confident as well as more effective in supporting their siblings with disabilities.

Recently, I came across a helpful tip sheet from Vanderbilt University for siblings that mentioned an interesting idea called a "letter of intent". Such a letter, rather than serving as a legal planning document, can be used practically to convey family stories, desires, and important incidental information for service providers who may be involved in assisting the person with disabilities in the future. I was reflecting on my own journey with my sister M and how important this incidental information is for her quality of life. See the attached tip sheet and feel free to share ideas, resources or stories that may help others.

This post is part of the collection

  • Like this post0 likes
  • 0 replies

Hi Amy! Thanks for sharing this tip sheet from Vanderbilt University! As a brother to a sibling with Down Syndrome, this really struck a chord with me:

"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?"

As a special educator, I try and ask these questions to my students parents in planning for their futures. My brother currently lives at home with my parents and he is about to turn 30. I would love to work with my parents in drafting a letter of intent to make sure that we are all on the same page.

Thanks for sharing!

dherrera - 1/25/2017

  • Like this post0 likes
  • 0 replies

This is a great resource for families! Thanks for the tip sheet!

Christi Mecca - 1/25/2017

The Communication Matrix is a service of Design to Learn at Oregon Health & Science University
© 2025 Charity Rowland, Ph.D.

Site by State33 and Smith & Connors