Monday, 13 March 2017

Letter to Michael Coteau and Sophie Kiwalla, MCYS

Michael Coteau, MPP
Ministry of Child and Youth Services
1200 Lawrence Ave. East, unit L02
Toronto, ON 
M3A 1C1

Dear Mr. Coteau,
            I would like to thank you for passing my earlier letter onto Marian Mlakar.  I found it very helpful having that direct phone call with her and getting some answers to my questions regarding the status on the Provincial Strategy for FASD.  Knowing that the strategy is now complete and is currently in the queue waiting for funding is certainly a great boost for my wife and I and our three children who have been diagnosed with FASD.
            However, to receive the news from Jeff Noble of FASDForever and Brian Tardif of Citizen Advocacy that while your office was interested in receiving information directly from them, it was discouraging to realize your office is still learning about this issue.
            Thus, I wanted to try and communicate to you and your office the impact FASD is having on our family and the province at large.
            FASD is a permanent brain injury with no cure.  It is defined as an invisible disability because to meet my children, you would not know what obstacles they are having to overcome.  Yet, their intelligence levels place them in the bottom 5% of the population and they can’t understand how certain actions will lead to certain consequences.  They can’t understand getting into a stranger’s vehicle is a bad idea.  Abstract concepts like good and bad, time, money, reading people’s emotions and being able to problem solve are all beyond their ability to understand.  However, with the proper supports in place, surrounded with the knowledge of what makes them unique, they can be and are being successful.  My three children can raise and show cattle, bake fantastic pastries and log a forest unbelievably well.  But they need my wife and I to help them through their anxiety, figure out the cost of things, and problem solve challenges.  You may recognize these challenges are extremely similar to the challenges people with autism face.
            To me, though, the biggest difference is in their life expectancy.  According to a study done by Thanh and Jonsson, the life expectancy of someone with FASD is 34 years of age.  The reason life expectancy is so low is because without support and education, someone with FASD has a propensity to poorer health, difficulty with maintaining healthy choices and care, mental health challenges, and poorer judgment which leads to these early demises.  When you consider there are currently 136,000 people in Ontario and 360,000 in Canada with FASD who will likely die in the prime of their lives and in the majority of cases leaving behind orphaned children, this truly is an epidemic.  When you consider the SARS epidemic of 2003 killed 44 Canadians, our residential schools with its 150,000 students and 6,000+ deaths and the largest epidemic in Canadian history, the Spanish Flu of 1918-9 killed 50,000 people, FASD truly is the worst epidemic in Canadian history.  And it is so preventable.  With proper clinics, community supports, system navigators and public advertising, we know this disability is manageable.
It is difficult for me to believe that your office has any larger or more pressing issue than getting funding for the Ontario FASD Strategy.  Please give it the consideration it deserves and make it a priority from this point on.  Thank you.
Rob More
Smiths Falls, ON

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