FASD and Poverty

Hello Senator Ravalia,

On behalf of our members and my children, I wanted to thank you for your dedication to Bill S-253.

I recently got to watch the video from the Nov 28 meeting   https://senparlvu.parl.gc.ca/Harmony/en/PowerBrowser/PowerBrowserV2?fk=659202&globalStreamId=3 and was thrilled to discover the bill has now gone to committee.  Please forgive the length of this email but there was so much wonderful dialogue that resonated with me.

I definitely appreciated the focus on prevalence and the acknowledgement that we really don't know what the actual prevalence is in Canada at this time.  I do want to note the funding PHAC gave Dr. Popova and CanFASD to determine that 98% of Canadians living with FASD who are undiagnosed or misdiagnosed has been a wonderful study for Rural FASD.    

I also appreciated Ms. Scott's comments at the end about the difference between a medical approach versus a social approach of support which reflects our current experience.

Since we know 98% of people living with FASD in Ontario don't have access to the Ontario Disability Support Program, Developmental Services Ontario Passport Funding, the federal Disability Tax Credit or the Canadian Disability Benefit since all of them require a diagnosis, we have had to use a social approach of support and work with organizations that don't have that eligibility requirement.

We are now also using the Canadian Survey on Disability released in May 2024 to show the dire financial state adults living with FASD are currently in.  Based on StatsCan's definition of a severe disability, we know FASD falls in the severe or very severe category of a global score of 0.5 or higher.  Importantly, because it allows self-identification, it is enabling a greater number of individuals livign with FASD to share their stories of their current life status. The survey demonstrates the median income of someone living with a severe disability is $28,110.  However, when we look at the survey in depth, unemployed people with a severe disability ages 25-34 which is 57% of those individuals is $18,000 annually.  Considering the current LICO-AT (Low Income Cut-off - After Taxes) number which determines annual cost of just housing, food and clothing is $25,000+, the majority of our young adults Rural FASD is currently supporting, who are already in highly vulnerable situations, are consistently living in a perpetual state of poverty, hunger and lack of wellbeing based on the first three goals of Canada's Sustainable Development Goals.

I can appreciate the committee's concern regarding the effectiveness of the Bill and was absolutely thrilled to hear Mr. Collins' endorsement of the Bill and am familiar with all the excellent work he made reference to.  There is certainly further work to be done but we continue to believe, considering the majority of our adult children can't currently afford housing, food and clothing, this Bill will provide the basis that brings research and living experience together and create sustainable collaborations that will permanently change life trajectories.  

We would also like to formally invite you to our National AccessAbility Week kickoff on Monday, May 26 starting at 10:00am at Lower Reach Park in Smiths Falls.  With the commitment from the five area Smiths Falls schools sending their students to this event, we are expecting at a minimum 1200 children celebrating the achievements of people living with FASD.

Rob More

Father of 3 amazing adult children living with FASD