Evolution of the FASD Awareness Day in Ontario

You may have heard already about the very exciting day at Queen's Park in Ontario this past Wednesday.  I had the pleasure of being involved in some of the activities and spoke with others about their experiences.

The Kingston Parent Action Group through MPP Sophie Kiwala held a FASD Awareness Day at Queen's Park where over 35 MPP's and staff met with 45 FASD reps from around the province.  As well, private meetings were done with six MPP's including Education Minister Naidoo-Harris.  Queen's Park and MPP Kiwala used this day to reintroduce the former Bill 191 as Bill 44 now where it unanimously passed first reading again.  Kids Brain Health Network and CanFASD also used this opportunity to raise the FASD profile.  KBHN and Dr. Popova released her earth-shattering study on FASD prevalence in Canada where we learned FASD prevalence is almost 3% and twice as much as autism.  Because of this news release, CTV, the National Post and Post Media, the Agenda with Steve Paikin and Amber Mac all added to the news cycle of the day.  I have included those links below.

https://www.ctvnews.ca/mobile/health/fetal-alcohol-disorder-more-prevalent-than-previously-thought-study-1.3879947

http://nationalpost.com/news/canada/more-than-a-million-canadians-could-have-fetal-alcohol-syndrome-disorder-study

https://www.facebook.com/ambermac/videos/845018349031665/

https://tvo.org/video/programs/the-agenda-with-steve-paikin/tracking-fetal-alcohol-spectrum-disorder

I would also encourage you to comment and like all three posts.  We want the media to continue publishing FASD stories.

The Kingston Parent Action Group deliberately set out to get representation from all regions and sectors throughout the province of Ontario to unify the FASD movement in one coordinated effort and make the strongest possible statement to Queen's Park that this is a provincial and national issue.  We accomplished that goal.  With this experience, we challenge each region now to have their own Advocacy Day at Queen's Park.
It is not difficult to do.  Our coordinator, Len Whalen, contacted MPP Kiwala and asked her staff to reserve a room for us during lunchtime.  Once the reservation was done, we then seeked sponsorship to cover the cost of the lunch.  If an organization of 10-12 people did this, expect the cost to be around $800-1000 with an attendance of 30 people.  In our case, Dr. James Reynolds of Kids Brain Health Network and Steve and Karen Catney of Alliance Youth Services did the sponsorship.
We then from our group picked a coordinator, invitation person, registration person, display person and photographer.  Realistically, if you have a group of 10-12 people coming, two people could do all of this.
The coordinator should communicate to the group the details of the day, get the security passes, booked the caterer and the room and determine the agenda of the day.  The invitation person would create the invitation, send it to the MPP constituency offices, log the responses, and coordinate the private meetings.  Potentially, this person could also pass out the name tags on the day and setup the display table.  In our particular case, the invitation was sent 8 weeks before the day and a reminder with new information was sent every Monday morning for all 8 weeks.  Staff members do come and go through the morning, the hosting MPP does the introductory speech at noon followed by an organizational rep for a total of 20 minutes.  The room was cleared by 1:30pm.
It was suggested that we have a banner with our logo on display, informational pamphlets, a clear mission statement, and a pin or ribbon that could be worn.  For our private meetings with MPP's, we gave them a one page briefing note ahead of time as we had 30 minutes to share with the MPP followed by their questions.  Each team had a lead who directed the dialogue with the MPP.

I have attached an example of a briefing note and the spreadsheet used to track the bookings.

https://docs.google.com/document/d/1yTnYyWzLZT06pF8T5r6cojfQk4TffbFBgwqgAAsLPrg/edit?usp=sharing
https://docs.google.com/spreadsheets/d/1ACQyMfcqygDUYPxw42PFCZJ_FLGNgBiSN7uOZg_GdG8/edit?usp=sharing


In later blogs, I will share information from the day, but there was one key piece.  One MPP told us how Autism Advocacy began in Ontario 15 years ago.  It started with a multiple rallies on the front lawn of Queen's Park.  With each rally, news coverage increased and political engagement increased.  This was followed by a letter writing campaign that is still happening today and frequent advocacy days. In my opinion, we need to be looking at having a rally on the front lawn in September when Queen's Park is back in session.  The Kingston PAG is planning its next advocacy day for the fall.  From what I saw, there is no reason why Ottawa, Halton, Waterloo, GTA, and the North aren't organizing their own advocacy day for the next year.  If you would like to know who the 45 participants were as they have now seen exactly how it is done, please feel free to comment to this blog and I will share the list with you.

MPP Kiwala commented that of all the Advocacy Groups she has hosted, we were by far the most organized she had ever seen.  We have made a great first impression, let's keep the momentum going.