Supporting and Caring for our Siblings with Developmental Disabilities

People with developmental disabilities are living longer, healthier and richer lives in their communities. Many living at home with their parents or in other dwellings under the watchful eye of their parents.

But who will succeed the care giving role  once the parents have passed away or are no longer able.

More and more often it is their sisters and brothers who are taking over that role.  While many of us take over that role because we want to do it and we want to ensure the continued good life for our bothers and sisters with developmental disabilities, it can be a difficult and lonely journey.

The needs of sisters and brothers who have assumed these roles are complex. They are complex but not be ignored. Because we have a social care model for people with developmental disabilities in Canada supporting siblings so they are strong, resilient, informed and well-resourced is essential. Strong siblings means they can continue to fulfill the care giving role they want to do and that our health and social service agencies need them to do.

My work includes:

  • Finding ways to build understanding of the complex needs of sibling care givers,
  • Drawing attention to the economic and social importance of sibling care givers,
  • Offering resources to support sibling care givers in our collective journey.

Online Resources

There is a US-based Facebook group called SibNet that hosts discussions from siblings from all across the world. https://www.facebook.com/groups/SibNet/

RESEARCH ARTICLES

Here is a list of sibling caregiving articles of interest:

Adult Siblings of Individuals with Intellectual Disability/Autistic Spectrum Disorder:Relationships, Roles & Support Needs, National Disability Authority (Ireland), 2016

Caring for a Sibling with a Disability, Easter Seals Disability Study (United States), 2012

Sibling Gatherings

A conference for Ontario-based siblings is being planned for the late fall 2018. Check back for more information.