Friday, 20 April 2018

Voices needed for Ontario FASD Website

It has just been announced that Best Start Resource Centre by Health Nexus has received the provincial contract to develop the one stop FASD website for caregivers in the province of Ontario.  They are asking for parents/caregivers for all parts and locales of the province to serve on their advisory committee in developing this website.

If you are not in a position to serve on this committee but would like to contribute information, please feel free to comment to me on this blog.  They want to develop a website that will be useful to us so please feel free to pass along anything you would like to see included within this website.

It has also been announced that the Kingston FASD Key Worker has been hired by Kids Inclusive at this point.  Interviewing continues for the Ottawa area and the Lanark Leeds-Grenville area.

Tuesday, 17 April 2018

The Power of a Caregiver

Last week, 45 FASD reps from across the province came together with one voice and met with over 30 MPP’s. When you consider that FASD has never had an advocacy day at Queen’s Park before and there has never been event where FASD reps from all parts of the province were physically together before, this could be considered a historical event. When you add in the factor that Kids Brain Health Network timed Dr. Popova’s report release with this event and created a lot of media attention, this could certainly be considered a rousing success.

The assumption going into this event was the focus needed to be on education. There were only seven MPP’s who spoke toward the FASD motion last December so we assumed the 25 MPP’s who joined us were starting to learn about FASD. It was very clear MPP Anderson of Durham, MPP Kiwala of Kingston, MPP Clark of Leeds-Grenville and Minister McMahon of Halton are very well informed. It was also clear we have currently managed not to be a partisan issue. MPP’s from all three parties came to learn about FASD and have consistently voted in favour of our motions. In the history of Ontario, only four pieces of FASD legislature have been passed.

- Sandy’s Law, back in 2004,
- the MCYS initiatives, last year
- Sept 9 as FASD Awareness Day, last year
- Bill 191 and now Bill 44, this year

What they all have in common is they were the results of caregivers speaking up. Caregivers, who are trying to support their children today, have the most powerful and loudest voice of all. While the majority of FASD reps present April 11 would be considered service providers or researchers, they are limited in their advocacy because of political considerations. As a caregiver, I’ll talk to anyone at Queen’s Park willing to listen.

I was at a writer’s workshop recently and was reminded of five important facts about writing by Managing Editor of Faith Today, Karen Stiller. I share this with you because writing and advocacy go hand in hand.

1) It is hard and discouraging.
2) You must have a passion in your belly to keep going.
3) Tell the truth. Don’t dance around it, don’t be ashamed, own it and be genuine.
4) Build a supporting community around you and hold onto them at all cost.
5) Be a risk-taker. Ask yourself why am I afraid?

It is these five facts that make you the ideal advocate. When you persevere, when it is not a job but a life, when you are genuine and not coming with an agenda, when we come together as one voice, and we show courage, people respond to that. What do we have to lose? We have nothing now and nowhere to go but up. We have heard so many times from so many people “No!” that personally it doesn’t even affect me anymore? My three children, who really struggle speaking to people they don’t know, sat in a room with 75 strangers for two hours, controlled their anxiety and then found it within themselves to share their stories with MPP Taylor afterwards. They then sat quietly in the gallery as they watched Bill 44 pass first reading. If they can do it, I most certainly can do it.

I know what my next four objectives are.

First, I am taking on the CRA, Minister Morneau and this Disability Tax Credit mess. How all three of my children don’t meet their definition of disabled is insane. I have now taken it to the appeal level and preparing for tax court. If you are not aware, the CRA is currently rejecting 70% of applicants who have been identified as disabled by Disability Support Programs. I reached out to Lisa Raitt, Deputy Leader of the Opposition who responded positively and now starting the conversation with her about this.
Second, I will be the first one up asking a question at my local All Candidates debate in May because
local media always publishes the first two questions. My question will be along the lines of “Our current government for the first time ever budgeted money for the 90,000 children impacted by Fetal Alcohol Spectrum Disorder this year which is the most prevalent neurodisability in Ontario and twice as prevalent as autism. If you formed the next government, what would you do to ensure individuals
impacted by FASD are properly supported?”
Third, I will continue to network locally, spread the word and ensure our local Key Worker has what they need to successfully support our community.
Lastly, as Doug Ford is making his way around the province, we keep talking to Simone about FASD.
Simone is part of his campaign team as the main policy advisor. She is in her late 20’s, long black hair, and will be hanging around in the back with 3-4 other young men. She has been told about FASD four times in the last three days. If you are going to a Doug Ford event is in your area, have a conversation with Simone.

I reach out to you again, my fellow caregivers. I heard it repeated on Wednesday that autism advocacy started 15 years ago with a few caregivers having rallies on the front lawn of Queen’s Park. We as caregivers need to lead the charge. MPP’s will work with us if we keep reaching out to them. Service providers respond to us when we provide the clients for them. Researchers reach out to us when they know we will volunteer. Media like us because we create political news and the heart-warming stories of courage, grit and honesty. Don’t forget, you have the greatest degree of all, “Caregiver with lived experience!” What else needs to be said?

Friday, 13 April 2018

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.

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.

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.

Monday, 2 April 2018

Creating success in the small things

I was watching a basketball game the other day and the announcer was talking about another announcer.  A team had just won on an incredible last second shot and the announcer was yelling and screaming and immediately went to his phone to check the news cycle.  The second announcer was saying we have become so conditioned to scrolling the news cycle now that we have lost perspective of what is truly important.
I found this statement to be so true.  My family have just spent the last four days isolating ourselves on the farm and pretty much ignoring the world.  It was so nice!  It occurred to me for our kids and us, this is one of our big secrets to success.
Social media and the drama that comes with it is really the biggest enemy our children are currently trying to overcome.  We have seen over and over again when our children is supported by people who understand their needs, they succeed.  It is also why we guard our home so diligently from outside sources because if it isn't the safe retreat we need, we know firsthand just how bad life can get.  This week, my oldest daughter had the opportunity to create a Facebook page and chose otherwise.  For us, this might be the greatest accomplishment she has done yet and a direct testimony to the work her support network has done.  Our middle daughter showcased her butterscotch pie this week at 4H Achievement day.  She made the crust from scratch, the pie from scratch, and the flambed whipped cream from scratch.  Our son watch a Transformers movie marathon in bed for two days, slept to noon the next two days and finally got back to his old self.  It has been a long time since he slept more than six hours.  It is absolutely amazing to me how that cool spring and fall air is so important to him.  Our entire four day weekend consisted of singing in church with friends, eating my daughter's pie, having lunch with the Mom's, dreaming about what we are doing this summer, and walking our 3 km trail with the dog every single day.  No fighting, no yelling, everyone being really lazy and just enjoying each other's company.
Shelley is always reminding me not to get too busy.  My propensity for work can get crazy sometimes where 16 hour days can become the norm and I keep moving to the next project.  However, I have seen what happens when I try to put those same expectations on my children.  Things break down.  But when I remember just how many 18 and 16 year old's are work ready, I realize they really do have bright future.  My oldest is discovering that she is quite the sales person at her co-op.  While she is constantly getting rejected by us as to which horse equipment we are buying because she is always picking the most expensive one, she is great at up-selling customers because she makes great arguments, mainly because she has a lot of practice.  Good thing Shelley and I are good at saying no.  For an 18 year old to have that skill, that is impressive.  And Cassie, the 16 year old, loves washing dishes and cleaning the kitchen as much as she loves serving customers and making meals at the bakery and home.  Yes, I know, all you teenage parents are jealous right now.
I have said it before and I will say it again, if you and your child are still pushing forward, you have achieved success.  These small victories, when put together, always represent something bigger than just themselves.

Two small notes:  Our little group out here in Eastern Ontario has just created our own website and Facebook page.  Please check us out at Rural FASD Support Network .

If you didn't see in the Ontario budget, monies was devoted to FASD diagnostics.  That is a huge one for us.  However, Bill 191 was eliminated in the prorogation and hasn't reappeared.  Not sure at this point if it is permanently gone yet.