Tuesday 10 April 2018


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Yona and her sister Danielle
I am delighted to host a guest post by Dr. Yona Lunsky in celebration of National Siblings Day. Dr. Lunsky is a loving sister and tireless advocate for the good care and mental health support of adults with developmental disabilities. 

Today is National Siblings Day. I’m very proud of my colleagues in the United States who launched the Sibling Leadership Network in 2007 in order to prioritize and give voice to siblings of people with disabilities so they could connect with one another and impact research, policy, and practice.

I still remember the first time I learned about the experiences of other siblings. It was during my graduate studies when a Nisonger Center faculty member, Tom Fish , shared a video with me of a workshop held a few years earlier, where adult brothers and sisters talked with one another about what life was like for them.  The impact this video had on me is something I can’t even put into words. In Canada, we didn't have a national leadership group like the one they started in the US until now, with the recent formation of The Sibling Collaborative. Today The Siblings Collective released a report  written by siblings about siblings based on the survey that siblings developed and that 360 adult siblings in our country responded over the course of 6 weeks. The siblings who led this initiative had no funding to do this work; they just had passion and they had each other and they recognized that they needed to bring their voices together in order to make a difference.
The viewpoints of hundreds of brothers and sisters are summarized in this report and I encourage all of you to read it in its entirety, but in the meanwhile I want to highlight a few things that stood out for me. The number one challenge identified was the lack of mental health supports for their brothers and sisters. We know that health is a huge issue and that as challenging as physical health care may be for adults with developmental disabilities, there is even less available when it comes to their mental health care and it’s their mental health that allows them to get up every day, to feel good about themselves  and to  be part of their communities. There is no health without mental health so we need to address this to help our brothers and sisters. The second most common challenge identified in this survey was the mental health of their parents. Brothers and sisters are watching their parents age and struggle with their own mental health, as well as that of their child with a disability. It was not surprising for me to read, therefore, that nearly half of the siblings surveyed identified struggles within their own relationships, and in terms of self care. 
We need to do more for siblings and we need to start engaging with them earlier. Most of the siblings who responded to this survey are seeking supports and want their voice to be heard so they can play a strong role in the life of their brother or sister. Understanding the Sibling Experience ends with 7 recommendations which focus on understanding sibling needs better, creating opportunities to bring them together, giving them the resources they are seeking, focusing on mental health, housing and finances, and including siblings more fully in future planning - literally offering them a seat at the table. This final suggestion is not just targeted toward parents, but toward service providers and policy makers too. Our entire culture and our language needs to change if we really want to invite siblings in.

Helen and her brother Paul
Eric and his sister Sarah

Thank you Helen Ries, Eric Goll and Becky Rossi for your leadership in developing this report. I am so proud to be part of the Siblings Collaborative and eager to keep learning from my fellow brothers and sisters from across the country. You can listen to a podcast about this report next week, and you can also join the collaborative mailing list or facebook group.
(Yona Lunsky directs the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health  at the Centre for Addiction and Mental Health in Toronto, Canada. She is the lead author of The Family Guide on Dual Diagnosis, which offers helpful information on meeting the mental health needs of people with developmental disabilities and their families.)

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