Time to address the Pink Elephant

On March 29 two significant events in the world of Fetal Alcohol Spectrum Disorder occurred in Ontario – but neither received any Provincial acknowledgement. It was the 15th anniversary of Sandy’s Law and the launch of a Provincial FASD website. These coming at the end of a trifecta of other non-FASD announcements.

FASD Provincial Warning

March 29 marked the 15th anniversary of the presentation of a private member’s Bill, which eventually became Sandy’s Law. Now, it was not the anniversary of Royal Assent, when a Bill becomes a Law, but still a significant date in history. If it wasn’t for a friend and fellow advocate who published that information, the date would have passed without mention.

The following is a great summary from Health and Social Services Haldimand and Norfolk:

What is Sandy’s Law?

Sandy’s Law, Bill 43, is an amendment to the Liquor Licence Act. It is a private member’s bill that was introduced by MPP Ernie Parsons of Prince Edward – Hastings County (Ontario), and was inspired by his late son, Sandy, who had Fetal Alcohol Spectrum Disorder (FASD).

How does Sandy’s Law affect licensed establishments?

As of February 1, 2005, all establishments in Ontario that serve or sell liquor were required to display signs cautioning women who are pregnant that the consumption of alcohol during pregnancy is the leading cause of FASD.

Who needs to post the warning sign?

Restaurants and bars licensed to sell beverage alcohol (wine, beer and spirits); LCBO stores and other retail stores authorized to sell beverage alcohol (i.e., The Beer Store; wine, beer and spirits manufacturers´ stores, including occasional extensions of on-site winery retail stores within farmers’ markets; grocery stores authorized to sell liquor to the public); and Licensed ferment on premise facilities.

What are the warning sign requirements?

The warning sign must be at least 8 by 10 inches in size. It must be prominently displayed in all locations where beverage alcohol is sold or where customers brew their own wine or beer for take home consumption. The sign can be displayed in color or black and white.

What is the penalty if a licensed establishment does not post the warning sign?

Failure to comply with the signage requirements is an offence under the Liquor Licence Act, with a maximum penalty of a $250,000 fine for a corporation, or a $100,000 fine and/or imprisonment for up to one year for an individual.

How do licensed establishments get the warning sign?

Establishments will be expected to print their own signs, which can be viewed and printed here.

I’m not saying there should have been acknowledgement – but given the recent announcements in the news about alcohol, it seems this was a missed opportunity to go back and look at the other recommendations made during the presentations and discussions about Sandy’s Law. Because signage was only part of it. But in 15 years that is all any of the governments in power have done. It has never even been updated. There is an opportunity now however, with this announcement:

Ontario Appoints Special Advisor for Alcohol Review

Government Moving Forward on Review that Will Boost Choice and Convenience

Alcohol reform is something long-desired by the people of Ontario. Today, we’re moving another step forward on our promise to improve customer choice and convenience and enable more opportunities for businesses in the beverage alcohol sector,” said Minister Fedeli.

Government Moving Forward on Review That Will Boost Choice and Convenience

In the news release, the government proudly states:

To date, the government has increased choice and convenience and saved consumers money by:

  • Letting The Beer Store, LCBO and other authorized retailers, such as grocery stores and agency stores, sell alcohol from 9:00 a.m. to 11:00 p.m., seven days a week.
  • Pausing beer and wine tax hikes initiated by the previous government.
  • Lowering the price floor to allow brewers to sell beer for $1 (Buck-a-beer).

If the government wants to increase access to alcohol, then there needs to be increased compliance with Sandy’s Law. With a maximum fine for a business of $250,000, surely more officers could be hired to check on establishments. This is a great way to increase revenue, create jobs (which is what this government says it is all about), inform the public and put some money aside for programs. There should also be a sin tax which is specifically targeted for awareness, prevention, addiction treatment and FASD programs.

The other significant event that occurred was the launch of the Provincial FASD website.

Funded by the Ministry of Children, Community and Social Services, it is one of the seven initiatives announced in 2017 for FASD: Ontario 2017 Budget Provides $26 Million for FASD .

It is bilingual site, created by Health Nexus with assistance from advisory committees of experts, caregivers and representatives of Indigenous communities.  

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I am grateful to this government that it honoured the commitment and continued the investment made in the last government’s mandate, given its cancelations and rollbacks of other initiatives – this one could have suffered a similar fate. But it didn’t. So thank you Premier Ford for that.

However, this exciting initiative also occurred without any fanfare or mention from the government. Why? This was an opportunity for this government to show some leadership on its commitment to addressing the crisis of FASD. Because with 537,949 people in Ontario with FASD it is a crisis. This is likely a conservative figure, using CanFASD estimate of 4% and population statistics – but even so, half a million people being virtually ignored is a crisis.

To get back to the website, as a member of one of the volunteer advisory committees that helped create the website, we received an email at 10:30 a.m. on the 29th from Health Nexus, saying it had been announced to their stakeholders and had gone live, so we could now share the information.

It felt a bit disheartening that we were not given any prior notice. We received no additional information. There was no media announcement from the government. You would think given the recent negative press over autism funding and other decisions against vulnerable people and social programs, they would have taken the opportunity to garner some positive press coverage. But nothing.

Any promotion was by individuals, groups and organizations in the FASD community.

A second big announcement last week:

Ontario to spend $10M per year on horse racing programs

From an article published online by  CBC :

Ontario has announced that $10 million per year will go to horse racing industry programs.

Finance Minister Vic Fedeli says the funding will support breeding and industry development for Ontario-bred horses and will be administered by Ontario Racing.

Fedeli says the investment through the Horse Improvement Program will help ensure the horse racing community can create and protect jobs.

A long-term funding agreement was previously signed between the industry and the Ontario Lottery and Gaming Corp, providing up to $105 million per year for 19 years for racetrack operations and purse support.

Maybe we should not have gambling or alcohol – but we do. So what we need to do is make sure if the government profits from these, then it also needs to provide awareness and education of the risks and dangers, but also fund services and programs for those affected by alcohol. That is what a responsible government would do. And not only the government, but alcohol producers as well. They should be paying a portion of sales toward programs for alcohol harms.

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The same friend and advocate that noted the anniversary of Sandy’s Law started a FASD Advocacy Page on Facebook: FASD Pink Elephant . The hope was to begin a movement for FASD Advocacy.

As part of a speech I gave last week at the FASD: Achieving New Heights Together Conference, put on by the Halton and Hamilton FASD Caregiver Support Groups, I spoke about how we have to start using our voices. Because this government is all about cuts to services. There may be things happening behind the scenes that we don’t know about – but no one I know has heard of any new plans for FASD – so until we see something we really have to be out there writing letters and giving a voice to FASD.

I wrote A Letter For Our Provincial Ministers. This was the response I received:

 

 

From the sounds of the letter I received, there seems to be some commitment to Fetal Alcohol Spectrum Disorder. But we need to keep the conversation going. We don’t need to be angry or aggressive, but we do need to let our MPPs know how we feel and what we need.

And the trifecta of announcements made last week:

Strong needs-based autism system on the way,

Ontario Community and Social Services Minister says

From the article published in the Toronto Star

MacLeod has said the government will spend more than $600 million on autism services in the coming months — after giving families a six-month extension to current therapies and eliminating means-testing for services — and about $500 million a year after that.

She also said her ministry is “going to continue to work with the minister of education, as well as the minister of health, to expand our services so that we are having better wraparound supports in place.”

Now, I’m not against any person getting the services and supports they need. But why are only children with Autism receiving money? There are other disabilities. I am in no way suggesting one disability get less so another can get funded, but why should one get funded over another? Why are the needs of other disabilities not as important? Is it not discriminatory to favour one group over another?

Yes the autism community has been advocating for years. But why should we have to advocate for basic human rights? Why can we not find ways to support programs and services that meet each person’s need. Why do we not just start funding the need and not the label?

The government is clearly playing favourites. One advocate noted the disparity between FASD and Autism (besides the $6 million per year for FASD for 4 years and the current $321 million a year every year, proposed $600 million this year and $500 million every year after that for autism).

Autism is listed under “Special Services” on the Ministry website. Click on Autism, it opens 5 sub-tabs with extensive information including “real” supports, services, programs, diagnostic hubs, 1-800 lines for help, etc. 

FASD on the other hand is not under “Special Services”.  It is listed under “Disabilities” as a single tab with 1 page containing minimal information, no “real” supports, no diagnostic supports, no 1-800 line for help, etc.  It refers individuals to the new website (which is separate and not part of the MCCSS government of Ontario gov.on.ca website).   

FASD incidence is 2.5 times the incidence of Autism and was not caused by the product that the Ontario government made $2.12 billion in 2018 from. 

The government of Ontario owes the people of Ontario with FASD a whole lot better! The placement of FASD on the MCCSS website reinforces the continued discrimination and makes it clear that FASD in Ontario is not part of “Special Services” and that they don’t want FASD to even be part of their site! 

Perhaps they opted for it not to be on their website because they too realize that the supports are negligible and embarrassing and as a result prefer it not be on their site!?    Ontario deserves a lot better …

Other disabilities deserve better. FASD is not the only disability being ignored.

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There is a rally being planned in Ontario – any disability is welcome and encouraged to attend – to show the government that we are all in this together.  You can get more information or sign up here: Time For Change

The Ontario Disability Coalition is calling on the government to stop the discrimination. This is from their news release issued yesterday:

TORONTO, ONTARIO – March 31, 2019 – The Ontario Disability Coalition is extremely disappointed with the Government of Ontario’s decision to continue ignoring the needs of tens of thousands of children and youth with disabilities across the province.

On the eve of changes to the Ontario Autism Program, children with any other disability continue to receive zero dollars in Direct Funding for the therapies they desperately need to thrive and survive.

“All children youth and individuals with disabilities, regardless of label, need direct access to funding to support the very costly therapies and essential health services that they require for their basic survival. How much longer will they be neglected by the Government of Ontario? The inequity needs to end”, said Sherry Caldwell, Co-Founder of the Ontario Disability Coalition.

The Ontario Disability Coalition will continue to advocate for the needs and rights of all children, youth and individuals with disabilities in the Province of Ontario until the Government ends its policy of discrimination. No one left behind.

About the Ontario Disability Coalition:

The Ontario Disability Coalition was founded to address and redress the ongoing and proactive discrimination of the Government of Ontario against persons with disabilities. It is a grassroots organization, comprised of thousands of concerned parents, caregivers, and persons living with disabilities in Ontario.

We represent all disabilities, including Cerebral Palsy, Down Syndrome, Chromosomal Abnormalities, FASD, Rett Syndrome, Muscular Dystrophy, Autism Spectrum Disorder, Visual Impairments, Sensory Processing Disorders, Hearing Impaired, and many other rare and unique disabilities.

For more information, please contact:

Sherry Caldwell, Co-Founder, Ontario Disability Coalition

Email: sherry_caldwell@icloud.com

Ipek Kabatas, Executive Member, Ontario Disability Coalition

Email: Ipekwellington@gmail.com

http://odcoalition.com

@ODCoalition

And we still have the issue of transition to Adult Services. In our current system, every child with a disability is cut off of services on their 18th birthday. They have to reapply, prove they still have a disability, and if approved, then they are put on a wait list for services. Depending on the service, it could be two years or twenty until that service is provided. See Nowhere to Turn for Adults with Developmental Disabilities for more information.

Abled People Quote about Disabled

Windsor West MPP Lisa Gretzky has introduced a bill that would eliminate wait times for developmental disability services and ensure no one goes without the developmental supports they need. You can find out more information here.

As you can see there is a lot happening right now in Ontario. And it seems to be changing daily. If you are looking for help writing to your MPP, you can visit FASWorld for their Advocacy Kit. As they state on their website:

There is no one more powerful than a voter, especially when working in concert with a large number of other voters. Parents and caregivers can make a difference because you know and understand the FASD issue best and you can tell the story of your trials, tribulations and successes better than anyone else.

FASWorld shows you how to effectively advocate with elected officials and provide you with tools to educate them about the impact of FASD on our society.

There never has been a more critical time than now to start using our voices. Whether it’s for a Provincial or Federal Alcohol Strategy, Sandy’s Law, FASD specific, all Disability Services, or Transition to Adult Services your voice matters. Because the current government (with a majority) was elected by a minority (because of our outdated election system). It’s time the majority stand up and let them know we do not approve of the decisions they are making.

Advocating for quality of life

I’ll leave the last word to Audrey McFarlane, Executive Director, of the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) who made (in part) the following statements in a blog post Could we fall behind? A look at FASD in Canada :

Still, our efforts are hindered by fragmented provincial and territorial approaches to FASD. Though many provinces and territories have programs and policies to help support prevention and intervention, Canada itself lacks a national strategy to unite government efforts towards a common goal. In order to be the most effective in our research and treatment for FASD, Canada needs a national-level strategy.

Yet, despite all our work, stigma and misconceptions around FASD and the effects of prenatal alcohol exposure persist.

Events like the 8th International Conference on FASD help make sure organizations across the globe understand the latest research around FASD. Still, the true benefit of this research cannot be realized without government action.

There needs to be a united front in the prevention, intervention and diagnosis of FASD that is funded appropriately. Inconsistent policies and supports across Canada do a disservice to the people impacted by FASD and their loved ones.

 

2 thoughts on “Time to address the Pink Elephant

  1. ethel de la penotiere says:

    I would like to share my Deputation and Proclamation for Sept 9th. We have televised council meetings, I do my deputation in Aug so people can see the message several times before Sept 09. Since we don’t have a flag I request to meet with council and give a deputation to ask the city to ring their bell 9 times at 9:09 on 09/09/19.  There are 2 attached to show my updates. You don’t have to speak to council every year, each year your need to request in simple terms to the council; Mayor read your proclamation, bells ring 9X @ 9:09 on 09/09.  They will send a notice, I do a deputation every 5 years.My husband created this proclamation 15 years ago and its true today.  When the Ontario Gov. Passes the bill to include FASD as a medical condition; the proclamation should include the Bill # and these same facts.  (hopefully the ultimate will happen, stamp out FASD)After the bells ring and the Mayor reads the Proclamation you ask someone to read “The FASD bell Concordance”.  It’s beautiful, this was Brian’s story about the reason why we ring bells.  If you don’t have bells at your city hall bring 9 people with different sounds that represent each sound in the concordance.  I invite my MP, MPP, Health Unit, Chief of Police and the media they will come.  My event lasts 15 min, max this is why “they” will come.  Good luck more may want to try.EthelSt. Thomas

    Liked by 1 person

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