There has been quite a flurry of media attention and significant movement in Ontario with respect to Fetal Alcohol Spectrum Disorder over this last week.

FASD Advocacy Day at Queen’s Park

On Wednesday there was a FASD Advocacy Day at Queen’s Park in Toronto. I do not know who organized it, and the invitations for attending were not open, so as to leave room for MPPs to attend. Unfortunately I heard the MPP turnout was low, but those that did attend were genuinely interested. If I see any reports about the day, I will be sure to share.

Update: The Advocacy/Awareness Day was organized by the Kingston Parent Action Group, through MPP Sophie Kiwala. 35 MPP’s and staff met with 45 FASD reps from around the province. According to Rob More, author of Gives Us More Special Needs blog:

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.

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.

Most significantly the Bill formerly known as 191, was re-introduced by the Honorable Sophie Kiwala, MPP for Kingston & the Islands, and Parliamentary Assistant to the Minister of Children and Youth Services and the Minister of Indigenous Relations & Reconciliation, for First Reading (after the Premier prorogued Parliament and effectively “killed” all Bills introduced up to that point) and it passed.

Ms. Kiwala moved first reading of the following bill:

Bill 44, An Act to amend the Education Act in relation to Fetal Alcohol Spectrum Disorder (FASD) / Projet de loi 44, Loi modifiant la Loi sur l’éducation en ce qui concerne l’ensemble des troubles causés par l’alcoolisation foetale.

The Speaker (Hon. Dave Levac): Is it the pleasure of the House that the motion carry? Carried.

First reading agreed to.

The Speaker (Hon. Dave Levac): The member for a short statement.

Ms. Sophie Kiwala: The bill amends the Education Act to provide for board activities to promote awareness and understanding of fetal alcohol spectrum disorder—FASD—including best practices to support pupils who may have FASD.

Looking at the record …

Fetal Alcohol Spectrum Disorder

Ms. Sophie Kiwala: I’m thrilled to rise today in support of fetal alcohol awareness advocacy day at Queen’s Park. We are joined by many advocates from across the province, who have worked tirelessly to make this day a reality. Thank you to everyone who attended our reception earlier, and thank you for taking the opportunity to have meetings throughout the day.

FASD is an umbrella term used to describe a range of cognitive and developmental disorders that are caused by exposure to alcohol in utero. When a woman becomes pregnant, alcohol consumption can pose a significant risk to the fetus and result in fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorder, and alcohol-related birth defects. While FASD has proven difficult to diagnose due to its complexity, early prevention is key.

It is estimated that one out of every 100 people may have FASD*, meaning that as many as 130,000 Ontarians may be affected. Recent studies suggest that this number may in fact be larger.

Last December, my motion to establish September 9 as Fetal Alcohol Spectrum Disorder Awareness Day passed unanimously, and I thank all members for their support. Shortly, I will be introducing my bill to help support students living with FASD in schools. This bill serves to complement the motion by encouraging boards to establish best practices and foster greater collaboration.

There is more work to be done. Today is about learning from those with lived experience, parents, families, friends and organizations. It is but a single step in a movement that has been the result of literally hundreds of individuals and hundreds of hours coming together over decades. Let’s keep it going.

* unfortunately the motion was not updated to the updated 3% prevalence

While this is great news, it isn’t fantastic news – because in order to become law, it needs three successful readings. Is there time before the election on June 7? (UPDATE: The Bill died on the floor as parliament was dissolved for the Election. So we need to keep pressure on with the new government after the Election). Sure there is time, because I heard that Sandy’s Law (The Liquor Licence Act requires certain premises to post signs warning women that drinking alcohol during pregnancy can cause Fetal Alcohol Spectrum Disorder) was pushed through in one sitting. Check out this article in The Gobe and Mail for details.

However, Bill 44, to amend the Education Act, holds a significant funding commitment. There were a lot of funding announcements the week after parliament resumed, but none included specific supports for students with Fetal Alcohol Spectrum Disorder.

Yet the cost to not provide preventive measures, accommodations and support, I would think, would be much higher. Dr. Svetlana Popova (who completed the prevelance study noted below) has previously estimated resources consumed by Canadians with FASD — including educational, medical, legal — cost $1.8 billion (in 2013 alone). And according to Dr. Kaitlyn McLachlan, a professor at the University of Guelph who studies FASD in prison populations, that number could be drastically reduced if effective policies and intervention programs existed.

New Study suggests 3% of Canadians have FASD

Prior to the Advocacy Day, a new study by CAMH was published.  Coverage was nationwide, the National Post reported:

Up to three per cent of Canadians — or about one million people — could have fetal alcohol spectrum disorder, and researchers say this is probably an underestimate.

A report released on Tuesday by the Centre for Addiction and Mental Health upends current estimates of the prevalence of FASD prevalence in Canada to date. The results are based on a survey of 2,555 seven- to nine-year-olds in the Greater Toronto Area, one of the largest sample sizes used in a Canadian study and according to the team’s lead researcher, Dr. Svetlana Popova, the first survey reflective of Canada’s diverse population.

“We are more confident now,” she says, that “FASD can happen to anyone, regardless of race, ethnicity, socioeconomic status.”

Previous Canadian studies on FASD have focused on narrow groups such as kids in care. They have also relied on medical records to estimate the prevalence of the disorder.

This percentage is interesting to me in a few ways:

• Although it’s triple the previous estimate of 1% which is still being used, it is less than the 4% that CanFASD estimates.
• The study was 7-9 year olds – and from previous articles I’ve read, and my own experience with the maiden, the difference to her peers really presented itself in grade 5, when the expectations were greater – so the 3% is likely low.
• Recent studies show levels of autism at 1.5% – and autism receives significantly more recognition, funding, and support. There is also speculation that some people diagnosed with autism may have FASD. Bringing the percentage higher.

Here is a link for the full report: World Health Organization International Study on the Prevalence of Fetal Alcohol Spectrum Disorder (FASD) Canadian Component

Additional Media Coverage for FASD

If you are interested in more media coverage of the study, check out:

Metro Morning with Matt Galloway

With lead researcher Dr. Svetlana Popova and a woman with FASD

Global News Radio 640 interviewed Dr. Popova.

National television coverage of Study on CTV News featuring a grandmother raising her grand-daughter.

I have to say I was quite disturbed by some of the comments on the CTV News Facebook site – many people continue to blame and shame birth mothers. With this attitude we will never gain a true perspective on how many people have FASD as women will continue to hide disclosure or not seek treatment. There is still much work to be done.

FB live Amber Mac segment

TVO’s The Agenda with Steve Paikin “Tracking Fetal Alcohol Spectrum Disorder” (interview with Dr. Svetlana Popova and Deb Goodman).

Here are some comments on TVO’s coverage from Mark Courtepatte (Hamilton FASD Parent and Caregiver Support Group):

While it is fantastic that media is bringing attention to FASD, there are several statements during the interview that will add to the continued mis-information or may suggest that the government has taken steps to assist. Svetlana Popova did a fantastic job attempting to clarify this however there were several statements that were not correct.

1. Opening comments by interviewer stated that it “often” includes life long brain damage.

Should be: FASD “always” includes lifelong brain damage.

2. Interviewer asked why FASD is not being diagnosed.

One fact he was not advised about is that the Ontario Medical Diagnostic Codes (OMDC) does not have a code for FASD diagnosis (doctors must use a general mental illness code). Therefore incidence in Ontario cannot be counted.

The OMDC does have codes for things like bee stings, athletes foot, autism, etc., but no code for FASD.

As well, many parents have to pay for the diagnosis and FASD is the ONLY disability in Ontario that must pay for its diagnosis where it is not available!

3. The 3% incidence is likely understated.

As Svetlana Popova stated only 42% of the mothers agreed to participate in the study. It is highly possible that those who refused have a higher incidence and may have avoided the study due to stigma and fear of blame.

4. The video included a young boy with facial features (referred to as FAS).

FAS affects less than 10% of people with FASD. The video may add to the misconception and mis-understanding.

5. Reporter stated “…in utero too much alcohol”.

Deb Goodman said yes, however in fact, as Svetlana Popova stated, no amount is safe.

A University of Belfast study confirmed that a single glass of wine stops the fetus from breathing and moving for up to 2 hrs.

6. The Ontario Initiatives statement by Deb Goodman, that it was a “great start” by our ministry and that they have taken a leadership role, is not correct.

Ontario is considered one of the worst provinces in Canada for awareness and support for FASD.

The $26 million over 4 years ($6.5 m per year) is negligible in comparison to the $1.9 billion profit by LCBO and is a fraction of the $500+ million the Ontario government announced in their budget for Autism.

There is not a single initiative to promote awareness nor a single action to enhance support and understanding by the Ministry of Education.

A correct statement would be: “that it is a very small and late start by our ministry and it is far from being a leadership role”.

Alberta for example started their FASD strategy more than 10 years ago.

7. Deb Goodman advised that alcohol awareness should start at grade 9.

The Chief Public Health Officer for Canada 2015 reported that 8% of grade 7 students consumed alcohol. Awareness should start far sooner than grade 9.

I could go on … but clearly there were many statements in the interview that were misleading.

In closing .. I am pleased that there is more media attention to FASD, however it is imperative that the attention not add to the misconceptions.

A High followed by a Low

The week, for me at least, ended on a disturbing note. The Education Minister, Indira Naidoo, who was present for the FASD Advocacy Day, tweeted the following graphic on Friday:

How sad that she chose to promote the governments support of growing the craft beer market over promoting the passing of Bill 44 (formerly Bill 191). Her portfolio is Education! She chose to remain silent on supporting students with FASD, as a result of the recent prevalence study and Bill 44, and instead chose to promote an industry that produces a product that when consumed during pregnancy causes Fetal Alcohol Spectrum Disorder.

Rather than end on a negative, I’d like to challenge those who care about this cause to take action.

Five Things You can do for FASD

1. If you haven’t already signed the Petition for Bill 44, please join the 14,000+ individuals who have so we can show the decision makers this is an issue they need to address.
2. If you are in Ontario, write your MPP and ask him/her to support a second and third reading of Bill 44. (Update: The Bill died on the floor once again, as Parliament was dissolved for the Election. You can still ask MPPs to re-introduce the Bill).
3. If you are in Ontario, write the candidates or attend their rallies leading up to Election Day (June 7) and ask them where they stand on FASD and if elected how will they support FASD.
4. Get out and vote on June 7 in Ontario!
5. Write a letter to the Editor or comment on any of the above media coverage of FASD to show we are out here – voices that will not be silenced. This Disability should not remain hidden or ignored any longer.

If you have any other ideas, please feel free to comment below.