Ministry of Education and Finance FASD initiatives

Last week, the Rural FASD Support Network with guidance and input from the Ontario Roundtable Report, CanFASD, and Citizen Advocacy, released the 23 initiatives.  This week, we would like to explore in detail why these particular initiatives have been developed and the evidence-based model that has been developed as a result.  The first four initiatives we will explore this week have a common theme.  We believe the next logical step for Ontario is to focus on building knowledge capacity around FASD prevention and awareness through collaboration.

The first two initiatives for the Ministry of Education are connected together.  Bill 191 and later Bill 44 was introduced by MPP Kiwala in 2017 and unanimously passed first reading with support from all parties.  It was believed at that time that it required an amendment to the Education Act to implement.  However, it should be noted that it was PPM 140 that accomplished the same type of action for students with Autism.  Regrettably, due to the election and the dissolution of Parliament, Bill 191 and later Bill 44 died.  With its established record of support, it is our belief that this initiative should be resurrected.  It is our understanding that there are three school boards with programming for students with FASD including Waterloo District, Keewatin-Patricia District, and Catholic District School Board of Eastern Ontario.  CDSBEO developed their programming from the research-based modeling of British Columbia and Alberta and have gathered their own evidence to demonstrate the successful outcomes students with FASD are currently experiencing.  Their model is known as the Multi-Disciplinary Approach or MDA.  MDA is used through BC, Alberta and Manitoba primarily as a diagnostic tool but has been adapted for educational purposes by CDSBEO.  Of the two MPP’s who have seen this presentation, the feedback has been the same.  This model needs to be shared throughout the province.  We also recognize, though, each school board will need to create their own variation of the model based on their vision and resources.  This is why a foundational knowledge of FASD is paramount.  Just like all educators need to understand the basics of ASD to establish best practices, educators need to understand FASD as well and the similarities and differences between these two neurological disabilities.  CanFASD has already developed these online courses in partnership with the province of Alberta and as a result offers them to Albertan educators for free to encourage this capacity building.  Finally, a new definition for IPRC exceptionalities is needed.  The current exceptionalities were established in 1999 when children with exceptionalities and particularly FASD were still being institutionalized for their entire lives in mental institution like Rideau Regional.  In the last twenty years, we have come so far in understanding the brain that our IPRC exceptionalities should reflect that understanding.  We need a new category called Neurological to differentiate from Behaviour, Communication, Physical, and Intelligence for the benefit of all students with neurological disabilities such as cerebral palsy, acquired brain injury and others.  Research, (Olson, 2007) has shown the key to inclusion for children with FASD is early intervention.  If intervention isn’t introduced until later in life, adverse outcomes become much more likely.  We are also thrilled to have youth with FASD and Janet Carioni of CDSBEO join us on Feb 24 to explain this model in more detail and answer questions.

We also strive to prevent any child having FASD through education and support.  While we recognize there are many factors as to why alcohol is drank during pregnancy, we can make a difference for 25.7% of child-bearing aged Ontarians who participate in heavy drinking.  This is why mandatory training on FASD needs to be part of Smart-Serve certification.  The risks of heavy drinking are beyond drunk driving.  As CAMH shows, unexpected pregnancies and children with FASD, addictions and mental health challenges can also result.  There is also a belief within the FASD community that Bill 43 Sandy’s Law is not widely known among Alcohol, Marijuana, and Tobacco distributors.  The Rural FASD Support Network would like to encourage the province to create an opportunity to work in collaboration with these distributors to ensure all Ontarians are making informed choices.  We are thrilled to have a youth with FASD who has successfully completed the Smart Serve Course and Nancy Lockwood of Citizen Advocacy join us as well on Feb 24 to share their knowledge and experience in this area.

If you have not confirmed your attendance yet on Feb 24 for FASD Awareness Day at Queen’s Park, we invite you to contact Rob at ruralfasd@gmail.com .

FASD and the 23 initiatives

In September 2015, the Province of Ontario released the FASD Provincial Roundtable Report after speaking to hundreds of individuals, caregivers and service organizations.  Following that report, MCCSS created legislature and provided funding to support children with FASD known as the six initiatives in the FASD world.  To date, besides Sandy’s Law and Sept 9 being officially declared FASD Awareness Day in Ontario on Dec 14, 2017, no other legislature has been passed in Ontario regarding FASD.

The Rural FASD Support Network started as four families and two service providers gathered around a kitchen table and a question.  “What can we do to support not just ourselves, but others?”  In 18 short months, we grew from four families to 90 families across the province and 26 service providers.  Within this growth, we asked every single family,  “What are the biggest challenges you are facing?”  and “What is the best thing you have discovered in terms of support?”  We quickly discovered there are seven ministries and 14 issues that kept getting repeated.  We also discovered through our service providers that solutions and models to solve these issues already exist, we just can’t access them.  We also learned the six initiatives from the Roundtable Report which include the Indigenous Nutrition Program, the FASD Ontario website, the FASD workers, the FASD Support Groups, the FASD Advisory committees, and the membership with CanFASD through MCCSS have been extremely beneficial to all of our families.

As a result, we reached out to the Canadian FASD Research Network (CanFASD) and Citizen Advocacy Ottawa to develop some next steps to tackle those 14 issues.  Over the past 18 months, we have consistently dialogued, and with guidance from our service providers, have prioritized 23 initiatives that, based on our evidence and research, will make another positive impact in the lives of all Ontarians with FASD.  These initiatives all have a common theme.  Further awareness and education on FASD is needed in all sectors of society and these initiatives are designed to encourage further discussion and collaboration on how to reduce stigma for individuals with FASD.

While these 23 initiatives are seen as priority, we also know FASD is a societal issue that impacts all ministries and all levels of government.  This is why we are so thankful 20 of our MPP’s have already confirmed their attendance on Feb 24 for FASD Awareness Day at Queen’s Park and why we are available to speak to any MPP who wants a private audience afterwards.  As part of the day, we will have an FASD display and info session in Room 230 from 10am to noon where service providers and support groups from across the province will be gathered and available to speak.  At noon, we will hear greetings from MPP’s and you will have the opportunity to hear from our 14 youth and adults with FASD and their caregivers as to what they do well and where they need support.  Following that, there is an opportunity to meet in private with a team consisting of a youth with FASD, a spokesperson from our group and at least one service provider who will explain an evidence-based model that supports the youth.

While we understand these 23 initiatives are not a comprehensive provincial strategy, it is our hope they will serve as a starting point for further dialogue.  Over the next three weeks, we will be sharing with you how we came to these particular initiatives, the current and evidence-based models that demonstrate the positive impact and our youth’s stories that show how those models have already made a difference for our youth in the counties of Leeds-Grenville, Lanark, Stormont-Dundas-Glengarry and Prescott-Russell.

If you would like to meet with us on Feb 24 in Room 230 or afterwards in your office, please confirm your attendance by contacting Rob at ruralfasd@gmail.com.