Justification for an Ontario Framework Supporting Income Generation and Poverty Elimination for People Living with FASD: A UN Development Group Theory of Change Approach

This justification utilizes the UN Development Group Theory of Change (ToC) framework to outline how an Ontario framework focused on supporting income generation can lead to the ultimate impact of eliminating poverty for people living with Fetal Alcohol Spectrum Disorder (FASD). 1. Problem Statement: People living with FASD in Ontario experience disproportionately high rates of severe disability, leading to significant barriers in accessing and maintaining meaningful employment. This results in the high rate of 70% unemployment, 18% of both Indigenous and non-Indigenous people living below the poverty line, and ultimately, poverty. Current systems and supports are inadequate to address the complex and lifelong needs of this population, perpetuating a cycle of disadvantage and hindering their potential for economic self-sufficiency and social inclusion. This issue is further exacerbated for Indigenous individuals with FASD due to the ongoing impacts of colonization and systemic inequities as noted in Calls for Action 33 and 34 as stated in the Truth and Reconciliation Commission Report and repeated in the Missing and Murdered Indigenous Women and Girls’s final report. 2. Desired Impact (Long-Term Goal): Poverty is eliminated for people living with FASD in Ontario, leading to increased economic well-being, social inclusion, and improved quality of life. 3. Intermediate Outcomes (Changes Needed to Achieve Impact): To achieve the desired impact, the following intermediate outcomes are necessary: ● Improved Economic Opportunities: People living with FASD have increased access to diverse and inclusive income-generating opportunities aligned with their strengths and support needs. ● Enhanced Skills and Employability: Individuals with FASD possess the skills, knowledge, and supports necessary to participate in the workforce or pursue self-employment. ● Increased Employer Awareness and Accommodation: Employers in Ontario understand FASD, its impact, and are equipped and willing to provide appropriate accommodations and inclusive work environments. ● Strengthened Support Systems: Comprehensive and coordinated support systems are in place to address the unique needs of individuals with FASD related to employment, financial literacy, and navigating social assistance programs. ● Reduced Stigma and Discrimination: Negative stereotypes and discriminatory practices towards individuals with FASD are reduced within the workforce and broader society. ● Improved Financial Literacy and Management: People living with FASD have the skills and support to manage their finances effectively and build financial security. ● Increased Access to Targeted Financial Supports: Financial assistance programs are flexible, accessible, and responsive to the specific needs and challenges faced by individuals with FASD. 4. Outputs (Specific Actions and Deliverables of the Framework): The Ontario framework will deliver the following outputs to achieve the intermediate outcomes: ● Development of FASD-Specific Employment Support Programs: Tailored programs offering individualized career counselling, vocational training, job coaching, and mentorship specifically designed to address the learning styles and support needs of individuals with FASD. ● Establishment of Supported Employment Initiatives: Creation of supported employment models that provide ongoing on-the-job support, job carving, and flexible work arrangements. ● Creation of Micro-Grant and Seed Funding Opportunities: Provision of financial resources and business development support for individuals with FASD interested in pursuing self-employment or small business ventures. ● Development and Delivery of Employer Training and Awareness Programs: Educational resources and workshops for employers on understanding FASD, implementing inclusive hiring practices, and providing effective workplace accommodations. ● Establishment of a Provincial FASD Employment Network: A collaborative network connecting individuals with FASD seeking employment, support service providers, employers, and government agencies. ● Development of Accessible Financial Literacy Training Modules: Tailored educational resources and workshops to improve financial management skills for individuals with FASD, considering their cognitive profiles. ● Advocacy for Policy Changes in Social Assistance Programs: Recommendations for modifications to existing social assistance programs to better accommodate the episodic nature of disability and the specific needs of individuals with FASD, including earned income exemptions and flexible eligibility criteria. ● Development of Public Awareness Campaigns: Initiatives to reduce stigma and increase understanding of FASD within the broader community and among employers. ● Establishment of Culturally Relevant Supports for Indigenous Individuals with FASD: Development and implementation of income generation programs and supports that are culturally appropriate, community-led, and address the specific historical and ongoing impacts of colonization. ● Creation of a Centralized Resource Hub: A readily accessible online and offline resource providing information on employment supports, financial assistance, legal rights, and other relevant resources for individuals with FASD and their families. 5. Assumptions (Underlying Conditions for Success): The success of this framework relies on the following assumptions: ● Political Will and Commitment: The Ontario government demonstrates a sustained commitment to addressing the needs of individuals with FASD and reducing poverty. ● Cross-Ministerial Collaboration: Effective collaboration occurs across relevant ministries (e.g., Health, Children, Community and Social Services, Labour, Training and Skills Development) to ensure a coordinated and comprehensive approach. ● Meaningful Involvement of People with FASD and Their Families: Individuals with lived experience are actively involved in the design, implementation, and evaluation of the framework. ● Capacity Building of Support Organizations: Existing and new organizations have the capacity and resources to deliver specialized FASD-informed employment and financial literacy supports. ● Employer Willingness to Engage: Employers are receptive to learning about FASD and are willing to implement inclusive hiring practices and provide accommodations. ● Availability of Adequate Funding: Sufficient and sustained financial resources are allocated to support the development and implementation of the framework's outputs. ● Accurate Identification and Referral: Improved systems for identifying individuals with FASD (even without a formal diagnosis) and connecting them to appropriate supports are in place. 6. External Factors (Potential Influences Beyond the Framework's Control): External factors that could influence the success of the framework include: ● Economic Climate: Overall economic conditions and job market fluctuations can impact employment opportunities. ● Public Awareness and Stigma: Prevailing societal attitudes and stigma surrounding disability and FASD can influence employer willingness to hire and social inclusion. ● Availability of Diagnostic Services: While the framework acknowledges the high rates of undiagnosed FASD, increased access to timely and accurate diagnosis could further inform support needs. ● Changes in Government Priorities: Shifts in political priorities and funding allocations could impact the sustainability of the framework. Budget Estimate and Return on Investment (ROI): Estimated Budget (Initial 5-Year Implementation): This is a preliminary estimate based on Alberta’s current plan and requires detailed costing based on specific Ontario program design and scale. ● FASD-Specific Employment Support Programs: $5 million/year (includes staffing, training materials, outreach) = $25 million ● Supported Employment Initiatives: $3 million/year (includes job coaches, employer engagement) = $15 million ● Micro-Grant and Seed Funding: $2 million/year (direct funding to individuals) = $10 million ● Employer Training and Awareness Programs: $1 million/year (curriculum development, workshops, online resources) = $5 million ● Provincial FASD Employment Network: $500,000/year (coordination, communication, events) = $2.5 million ● Accessible Financial Literacy Training: $500,000/year (curriculum development, facilitators) = $2.5 million ● Policy Advocacy and Research: $200,000/year (consultations, report development) = $1 million ● Public Awareness Campaigns: $1 million/year (media, materials, events) = $5 million ● Culturally Relevant Indigenous Supports: $3 million/year (community-led initiatives, partnerships) = $15 million ● Centralized Resource Hub: $300,000/year (website development, maintenance, staffing) = $1.5 million ● Evaluation and Monitoring: $500,000/year (data collection, analysis, reporting) = $2.5 million ● Contingency (10%): $8.5 million Total Estimated Budget (5 Years): Approximately $85 million Return on Investment (ROI): While quantifying the exact ROI can be complex, Alberta estimates their return on investment for their provincial FASD strategy to be between 150% and 290%. CanFASD estimates the annual cost of FASD in Ontario is $600 million primarily in productivity loss, special education, justice costs, health care and social services so the potential benefits of this framework could significantly outweigh the costs in the following ways: ● Reduced Social Assistance Costs: By enabling more individuals with FASD to become employed, the reliance on social assistance programs will decrease, leading to significant cost savings for the government. ● Increased Tax Revenue: Employed individuals contribute to the tax base through income tax and consumption taxes. ● Increased Economic Productivity: Engaging a currently underutilized segment of the population in the workforce will boost overall economic productivity and address labour shortages. ● Reduced Healthcare Costs: Improved economic well-being and social inclusion can lead to better mental and physical health outcomes, potentially reducing healthcare costs associated with poverty and unmet needs. ● Reduced Involvement in the Justice System: Individuals with FASD are disproportionately represented in the justice system. Increased economic stability and support can contribute to reduced crime rates and associated costs. ● Improved Quality of Life and Well-being: Increased income and economic independence lead to improved self-esteem, social inclusion, and overall quality of life for individuals with FASD and their families. ● Strengthened Communities: Inclusive communities that value the contributions of all their members are stronger and more resilient. ● Addressing Intergenerational Poverty: Breaking the cycle of poverty for individuals with FASD can have positive impacts on future generations. Qualitative ROI: Beyond the quantifiable economic benefits, the framework will yield significant qualitative returns, including: ● Increased Dignity and Self-Worth: Enabling individuals with FASD to earn their own income fosters a sense of dignity and self-worth. ● Greater Social Inclusion and Participation: Employment provides opportunities for social interaction and integration into the community. ● Reduced Stigma and Discrimination: Increased visibility of employed individuals with FASD can help to challenge negative stereotypes and promote understanding. ● Alignment with Human Rights Principles: The framework upholds the rights of individuals with disabilities to equal opportunities and full participation in society. Conclusion: Implementing a comprehensive Ontario framework grounded in the UN Development Group Theory of Change is a crucial investment in the well-being and potential of people living with FASD. By focusing on income generation and poverty elimination through targeted supports, increased employer awareness, and systemic changes, Ontario can create a more inclusive and equitable society while realizing significant economic and social returns. The estimated budget, while substantial, is a necessary investment to address a significant and often overlooked societal challenge, ultimately leading to long-term cost savings and a more prosperous and just Ontario for all.

FASD and the Workplace

Oct 3, 2025 In this final blog on FASD and Employment, we will look at the potential impact incorporating neurodiverse individuals into our workforce will have on our province. According to the 2021 Census, 10.1% of our population or 1.4 million non-Indigenous Ontarians are living below the poverty line or $26,570 annually. Also according to the 2021 Census, of the 73,000 Indigenous people living in Ontario and poverty, 33% live on a reserve and 16% live off-reserve. Finally, according to the Census, 21% of Ontarians or 1 in 5 people living in poverty are living with a disability. However, the Canadian Labour Market research shows while only 45.4% of Ontarians living with a disability are currently employed, they are generating a mean annual income of $59,000. Interestingly, the monthly Ontario Labour market report tracks unemployment for sex, age, visible minority, immigrant status and Indigenous group but does not for people living with disabilities. As a result, this current economic reality creates additional stress on our affordable housing market, food banks, emergency wards, shelters, support services and prisons. While a basic income is required to ensure a person living with a disability has the financial means to access employment services, communicate with employers, live in a stable and safe home, and have a healthy diet, ideally, it serves as a safety net during employment transitions according to the original purpose of ODSP as seen by several of our members. A person living with a disability just needs the opportunity to have increased economic well-being through workforce retention, have poverty eliminated, experience social inclusion for an improved quality of life. Through our focus groups of stakeholders, Rural FASD developed the following justification for an Ontario framework on income generation using the aforementioned United Nations ToC and the model established by Alberta in 2009 which currently has the highest income level and lowest poverty rates among people living with disabilities in the country. This justification is designed to serve as a starting point for dialogue in the hopes of creating future change. The key highlight is Alberta’s evaluation that their return on investment is between 150 to 290%. It should also be noted the budget will be much less due to already existing outputs in various Ministries and programs. The other recommendation our focus groups made was the initial focus of the framework needs to be on the educational system. Of the seven intermediate outcomes, enhanced skills and employability, strengthened support systems and improved financial literacy and management are the initial outcomes and best suited in our educational system using best practices for neurodiverse individuals. We recognize this information reflects a very large paradigm shift in our thinking and attitudes which is why bringing stakeholders together and identifying initial steps is crucial. This is why Rural FASD is one of many organizations partnering with CanFASD at its biannual international conference being held at the Hilton Downtown Toronto Oct 21-23. This conference’s theme is Shaping the Future of FASD: From Evidence to Action and spots are filling up fast. Finally, if you want to learn more on how people living with disabilities can be added to our workforce, please come to our next FASD Awareness Day at Queen’s Park on Thursday, Oct 23 from 10:30 to 1pm sponsored by MPP John Jordan of Lanark, Frontenac and Kingston. You will have an opportunity to speak directly and have lunch with multiple young adults living with FASD who have become employed. We also invite all MPP’s interested in speaking at this luncheon to contact Jayne at opm@ruralfasd.ca to be added to the itinerary. To all members of the public interested in attending, please reach out to your local MPP to join them as a guest. Rob More, MA, OCT Father of three amazing adult children living with FASD

Employment and Interdependence

Sept 7, 2025 In my last blog, the connection between unemployment and living with FASD was demonstrated. However, there are documented and researched solutions. As seen in multiple Ministry of Labour, Immigration, Training and Skills Development reports, every employee requires certain skills. These skills include soft skills like communication, teamwork and problem-solving and technical skills in an area of strength for the individual. However, understanding what a strength-based approach for people living with FASD is not common knowledge within our labour force or support services. As seen by Dr. Popova’s report on the most common comorbid conditions associated with FASD, expressive and receptive language, affect or behavioural conditions, sensory, hearing and sight challenges are considerations for the majority of people living with FASD. In Dr. Pei’s research on Toward Healthy Outcomes, the employment sector is one of the key twelve sectors requiring support in order to achieve a healthy life outcome and is directly connected to interdependence. In the Anishinabek Nations model for supporting people living with FASD, Knowledge Keeper Charles Meekis of the Sioux Lookout First Nations Health Authority follows Gregory Cajete’s research on Native Science’s Natural Law of Interdependence. However, all current programming and training in both our educational system and our employment agencies on these skills are designed for neurotypical individuals. Our programming uses institutionalized methods with the expectation that the individual has good receptive and expressive language skills, has some problem-solving capabilities, able to follow and contribute in social interactions and mental health strategies to manage anxiety and stress. While great progress has been made in these areas, it is important to note Ontario was denying entry to school for neurodiverse students in 1998 and was institutionalizing neurodiverse adults out of society up to 2008. We are still only one generation removed from no equity, diversity and inclusion for neurodiverse individuals. This means the high school class of 2026 will be the first to have never lived in a world where neurodiverse individuals were segregated from society. In our current employment sector, it is not surprising our largest untapped workforce demographic is individuals living with disabilities. Rural FASD, using the United Nations Theory of Change for Sustainable Development Goal for no poverty, followed the five key steps of creating sustainable change for these individuals. Using a focus group of individuals living with FASD and in poverty and led by a consultant, the initial issue was identified as 1) Provide employment support using a “walk alongside” model. This issue was then added as one of our five strategic priorities to complete our vision and mission. 2) We then identified who the stakeholders were and invited them to join us in the development of our plan. Those stakeholders included people living with FASD, support people, employment agencies, researchers, service providers and funders. 3) We then gathered together and determined the risks and assumptions associated with living with FASD and employment. While there were many which will be summarized in our final report at the end of this project, two key ones were employers, including the Province of Ontario, do not follow AODA guidelines related to readability levels for job descriptions. Through a sample audit of the Job Bank, every job description listed was written at a college level language or higher even if it only required a high school diploma education. Second, currently, provincial employment agencies due to a lack of knowledge capacity will at times refer people living with disabilities to federal partners who receive dedicated funding creating a loop of no lead agency and no direct support. 4) With this information, we developed our plan of peer-supported mentorship and fully AODA compliant information sharing similar to the apprenticeship model but with a complete wrap-around support in all required sectors. 5) Finally, the initial results and data are demonstrating great results and now being copied by our partners. To meet some of the people being supported by this project, please come to our next FASD Awareness Day at Queen’s Park on Thursday, Oct 23 from 10:30 to 1pm sponsored by MPP John Jordan of Lanark, Frontenac and Kingston. You will have an opportunity to speak directly and have lunch with multiple neurodiverse adults who are currently employed. We also invite all MPP’s interested in speaking at this luncheon to contact Jayne at opm@ruralfasd.ca to be added to the itinerary. To all members of the public interested in attending, please reach out to your local MPP to join them as a guest. Rob More, MA, OCT Father of three amazing adult children living with FASD

FASD and Employment

While a lot of attention has rightly been given recently to the connection of people living with disabilities and poverty, most of the discussion has centred on universal basic income. However, the inherent challenges associated with UBI have become apparent again with the rollout of the Canadian Disability Benefit and changes to the Ontario Disability Support Program. Among some of the challenges is accessibility to diagnostic capacity, attitudinal stereotypes, and lack of knowledge capacity within key sectors. Rural FASD, with its innovative grassroots approach to problem-solving, has learned and implemented solutions among our most vulnerable individuals, neurodiverse individuals currently undiagnosed. It is important to note all our current funding models assume that every person living with a disability has received a medical diagnosis. Yet, Dr. Popova’s 2024 study for the Public Health Agency of Canada demonstrates that in Ontario, we diagnosed 1347 of the current 562,800 Ontarians living with FASD between 2015 and 2019. Recent increases to Ontario’s FASD diagnostic capacity has improved our rate but Dr. Popova concluded 98% of Ontarians living with FASD are still currently undiagnosed or 551,544 out of 562,800 individuals. Because ODSP, Passport Funding and CDB require a diagnosis, universal basic income is not an option for these neurodiverse individuals. It is not surprising then that StatsCan states 74% of Ontarians living with very severe disabilities such as FASD are living in poverty in the recently released Canadian Survey on Disabilities and confirmed by the Labour Force Survey. It should be noted as well that the unemployment rate is twice as high for people living with FASD ages 16-24 versus all other age groups of people living with FASD. While the options for people living with FASD not wanting to live in poverty in Ontario are very limited, the most viable according to our members is sustainable employment. Considering the same Labour Force Survey states there are annually over 300,000 unfilled jobs in Ontario, there are still many challenges to overcome for people living with FASD to become employed. These challenges start with our educational system which does not currently receive any training or professional development on how to best support students living with FASD as proposed by Bill 172 in 2020. As a result, most of these students are isolated, trained to be dependent on adult support, and not receiving the basic foundational and soft skills required to become employable. Following their educational training generally without a high school diploma, they transitioned into the adult world with little to no technical or communication skills. They have no viable option to upgrade their skills through post-secondary learning and no understanding how to navigate the employment sector. It is at this time they are most vulnerable to human trafficking, food insecurity, mental health challenges, gang involvement, incarceration and homelessness. Without a strong network, their focus becomes daily survival resulting in greater challenges. However, it does not need to be like this. Rural FASD and our partners such as the Ontario Trillium Foundation, the Adoption Council of Ontario, Open Doors for Lanark Children and Youth, the Town of Smiths Falls, the Municipality of North Grenville, the Townships of Edwardsburg-Cardinal, Beckwith, and Montague and the Counties of Lanark and Leeds-Grenville has changed this trajectory. To learn more on how this has been accomplished, please come to our next FASD Awareness Day at Queen’s Park on Thursday, Oct 23 from 10:30 to 1pm sponsored by MPP John Jordan of Lanark, Frontenac and Kingston. You will have an opportunity to speak directly and have lunch with multiple young adults living with FASD who have overcome these challenges. We also invite all MPP’s interested in speaking at this luncheon to contact Jayne at opm@ruralfasd.ca to be added to the itinerary. To all members of the public interested in attending, please reach out to your local MPP to join them as a guest. Rob More, MA, OCT Father of three amazing adult children living with FASD

FASD and Poverty

Hello Senator Ravalia,

On behalf of our members and my children, I wanted to thank you for your dedication to Bill S-253.

I recently got to watch the video from the Nov 28 meeting   https://senparlvu.parl.gc.ca/Harmony/en/PowerBrowser/PowerBrowserV2?fk=659202&globalStreamId=3 and was thrilled to discover the bill has now gone to committee.  Please forgive the length of this email but there was so much wonderful dialogue that resonated with me.

I definitely appreciated the focus on prevalence and the acknowledgement that we really don't know what the actual prevalence is in Canada at this time.  I do want to note the funding PHAC gave Dr. Popova and CanFASD to determine that 98% of Canadians living with FASD who are undiagnosed or misdiagnosed has been a wonderful study for Rural FASD.    

I also appreciated Ms. Scott's comments at the end about the difference between a medical approach versus a social approach of support which reflects our current experience.

Since we know 98% of people living with FASD in Ontario don't have access to the Ontario Disability Support Program, Developmental Services Ontario Passport Funding, the federal Disability Tax Credit or the Canadian Disability Benefit since all of them require a diagnosis, we have had to use a social approach of support and work with organizations that don't have that eligibility requirement.

We are now also using the Canadian Survey on Disability released in May 2024 to show the dire financial state adults living with FASD are currently in.  Based on StatsCan's definition of a severe disability, we know FASD falls in the severe or very severe category of a global score of 0.5 or higher.  Importantly, because it allows self-identification, it is enabling a greater number of individuals livign with FASD to share their stories of their current life status. The survey demonstrates the median income of someone living with a severe disability is $28,110.  However, when we look at the survey in depth, unemployed people with a severe disability ages 25-34 which is 57% of those individuals is $18,000 annually.  Considering the current LICO-AT (Low Income Cut-off - After Taxes) number which determines annual cost of just housing, food and clothing is $25,000+, the majority of our young adults Rural FASD is currently supporting, who are already in highly vulnerable situations, are consistently living in a perpetual state of poverty, hunger and lack of wellbeing based on the first three goals of Canada's Sustainable Development Goals.

I can appreciate the committee's concern regarding the effectiveness of the Bill and was absolutely thrilled to hear Mr. Collins' endorsement of the Bill and am familiar with all the excellent work he made reference to.  There is certainly further work to be done but we continue to believe, considering the majority of our adult children can't currently afford housing, food and clothing, this Bill will provide the basis that brings research and living experience together and create sustainable collaborations that will permanently change life trajectories.  

We would also like to formally invite you to our National AccessAbility Week kickoff on Monday, May 26 starting at 10:00am at Lower Reach Park in Smiths Falls.  With the commitment from the five area Smiths Falls schools sending their students to this event, we are expecting at a minimum 1200 children celebrating the achievements of people living with FASD.

Rob More

Father of 3 amazing adult children living with FASD

FASD and Youth Housing

If you are finding life to be similar to us, life has very much became a marathon now.  Everyday is an exercise in self-discipline and trying to maintain some sense of routine.  We are finding we need to set our alarm to go off every morning to encourage us to get up and start our work day.  We need to follow our morning routine and have built in our day that the girl’s support worker always calls at 10am and does an initial activity with them over Zoom conferencing.  The kids move pretty slow in the morning while my wife and I are getting our work done.  The afternoon focus turns on them and working through their school work.  We always stop at 4pm and go for our walk or ride as a family which is absolutely a highlight.  Finally, with this beautiful weather, we focus on the yard after supper.

While this is our new normal, it is interesting to see all the online resources that are being offered now.  One of the big challenges we are finding, after spending hours online with my work, the kids’ work and the beautiful weather, is we really don’t want to be in front of screens watching other webinars and resources.  

However, a couple items that might be of interest to you is a short series of workshops that Kids Inclusive, who serve as the LHIN for our area, are doing on the F-Words from CanChild.  https://www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability  The F-Words are protective factors that can help any child with a disability and are evidence-based from around the world.  This June 9 workshop will give caregivers an opportunity to connect with each other. https://www.eventbrite.ca/e/f-words-family-event-tickets-104158378514

We also had a presentation done for the Rural FASD Support Network by Terrilee
Kelford of Cornerstone Landing.  Terrilee sits on a national advisory council related to youth homelessness and was gracious enough to share some of her knowledge.  As part of the presentation, she conducted a survey within our membership as to what type of housing makes the most sense for adults with FASD.  She found between the options of living at home, living in group home, living as a boarder, living in an apartment with immediate support, or living in an apartment without immediate support, 70% of responders said living in an apartment with immediate support made the most sense.  She also shared the model we use in Lanark County is called Housing First.  Essentially, we make sure the housing situation is taken care of first, then we focus on overcoming our challenges.  We don’t require compliance, good choices, or overcoming challenges like addictions to be done before offering a housing option.  Just like we hear in our education, justice and support sectors, someone with FASD can’t be expected to earn or gain housing unless we already have the necessary protective factors in place. To learn more about FASD and Housing, please watch the following video:   https://youtu.be/oz7PpRDX0ec

Will Covid19 increase FASD prevalence?

In the past couple weeks, there has been three major announcements related to children’s mental health that will be have impact for everyone.  While these announcements do have large influence on people with FASD, they will make a difference in everyone’s lives.

The first announcement was the Nanos study on alcohol consumption in Canada in the month of March https://www.ccsa.ca/covid-19-and-increased-alcohol-consumption-nanos-poll-summary-report and the corresponding announcement from the World Health Organization http://www.euro.who.int/en/health-topics/disease-prevention/alcohol-use/news/news/2020/04/alcohol-does-not-protect-against-covid-19-access-should-be-restricted-during-lockdown.  Nanos found that drinking among adults ages 18-34 has increased by 1/5 over normal consumption or 21%.  The WHO does make mention of the fact that increased alcohol consumption can lead to higher mental health challenges and alcohol-based disorders of which Fetal Alcohol Spectrum Disorder would be classified.  Knowing alcohol consumption has risen significantly in the past month, the second question to be asked during this time of social isolation is can we expect to see a mini-baby boom in the months of Dec-Feb 2020/2021?  Obviously, the importance of prevention conversation is key right now to lowering the curve of FASD.  If you find yourself in a situation where you are having that conversation remotely, please know you can direct people to CanFASD’s material on FASD prevention at https://canfasd.ca/topics/prevention/#About.  When you consider 3-4% of our population likely have FASD (Popova 2018) and FASD costs our country 9.7 billion dollars per year (Thanh & Jonsson 2015), we want to be vigilant in helping lower that curve as well.

The second piece of information was in regards to Kids Help Phone.  As you may have heard, the federal government gave a lot of money to Kids Help Phone to support children’s mental health.  Their primary role is to serve as intake workers and system navigators and then do the referrals to the child’s local mental health unit for support and follow-up.  This is brilliant and the way it should be.  If you are finding your child needs mental health support, please call https://kidshelpphone.ca/  or 1-800-668-6868 and know you won’t be dealing with some faceless counsellor but in fact, will get connected with a local counselor.                                                                                                                           Finally, the Rural FASD Support Network had the pleasure of connecting remotely with Ella Haley, psychotherapist for Open Doors Children’s Mental Health in Lanark County.  Ella’s speciality is connecting sensory integration and mental health.  We had the opportunity to hear why movement and exercise have large impact on our mental health.  Some of our caregivers shared how distance learning for our children is helpful as long as everyone has safe quiet places to retreat when necessary.  Ella started with how our awareness of our body in space, our balance and orientation and how our internal organs feel has major impact on our ability to work and be with others particularly in school.  She then spoke about how children with sensory modulation challenges can be found in four different quadrants related to threshold and self-regulation and the primary challenges they can face.  She finished with some general strategies for caregivers pointing out the key is creating a safe, non-judgmental space for all with a desire to learn used in an empathic way. https://youtu.be/U4FlZrxE4A                                                                                                                               As we go through this cultural shift with a focus on finding ways to connect in a virtual manner, we do express our appreciation for all our frontline workers particularly those who are working and living in long-term care homes, hospitals, and prisons.  We also thank those who enable us to provides for our essential needs including our food service people, truckers, transportation people, and grocery store workers.  We know as Canadians; we have the ability to do this and will be stronger in the end for it.  Stay safe and remain connected.

FASD and Connecting Virtually through STEM(Science, Technology, Engineering, Math)

On Saturday, March 21, the Rural FASD Support Network met with help from the amazing partnerships throughout Lanark County and continued to provide support to children with FASD and their caregivers.  With Calvary Bible Church opening up their facility and providing direct cleaning afterwards, Beckwith Tech Camp providing the expertise and crew of one person, Cogeco TV in Smiths Falls loaning the equipment and Lesley and Allison Cochran of Almonte sharing their experience and knowledge about DoTerra Essential Oils through Facebook LiveStreaming, the Rural FASD Support Network came together for an hour and half and once again connected as a community.  We were joined virtually by Megan Van Allen, FASD Worker for Kids Inclusive in Kingston and Christine Lapeer, nurse for Lanark Mental Health and did check-ins through Zoom Conferencing.  Within our time together, we learned how essential oils impact our body’s balance, our mental health, our sleep, and many other facets of our life.  We heard several testimonials from both the Cochrans and many of our members who joined us.  Following their presentation, we then went into confidential sharing time through Zoom conferencing and had the opportunity to hear how everyone was doing, their highlight of the past week, and their biggest concern going forward.  We also heard valuable information about how our mental health units are still meeting needs, how our paramedics are protecting themselves, status of employment situations and potential education resources that will be posted shortly through our Twitter account.

One of our biggest concerns going forward is the impact ongoing isolation will have on families and caregivers.  We shared how important it is for caregivers to remain calm and engage with their children and how that will have huge and numerous positive impact on everyone.  It is also important to note that our mental health clinics remain open and will continue to work with families and individuals who need mental health support through this time.  Finally, we also shared the importance of continuing to find ways to connect with others and maintain some type of structure and routine in our lives.  This is why we were thrilled to help St. Francis de Sales Parish in Smiths Falls by recording their mass immediately following our meeting and sharing it with their community https://youtu.be/LlXAtUrVvgM.

We thank all our partners for making this day so memorable and look forward to continuing to meet our mandate in supporting families with FASD.  Please note all individuals in the videos maintained a distance of six feet and immediately cleaned their hands and all surfaces immediately before and after the events.

Mobile Crisis Intervention Teams and FASD

Photo by Aidan through Kids Brain Health Network

One of the benefits of our FASD Awareness Day at Queen’s Park on Feb 24 was it allowed us to bring together several partners from across the province including Chief Mark McGillivray of Smiths Falls Police, Inspector Karuna Padiachi and Inspector Derek Needham of the OPP and Ms. Rebecca Fromowitz of Lanark Mental Health who represented the Lanark County Mobile Crisis Intervention Team that just made the national news.  https://www.cbc.ca/news/canada/ottawa/opp-smiths-falls-police-mental-health-crisis-1.5488509 

For those of you who have heard me say you need to establish the police as part of your network in supporting your youth and adults with FASD, these folks are our partners.  However, I was also told at our Awareness Day that most areas have Mobile Crisis Intervention Teams.  As a caregiver for someone with FASD, this is the team you want to meet.  I would strongly encourage you to meet the point person for that team, introduce your child to them on a good day, make sure they understand what a mental health crisis looks like for you and your child and have a plan and contact info for when this service is needed.  While I recognize not all of you are going to get a mental health nurse like Christine, through your collaboration and relationship building, you can also develop the same type of bond that exists between Christine and Sky.

You should also know our local police make a point of coming into our schools, meeting the kids, doing workshops on drugs, drunk driving, vaping and other topics, and community events like having the kinder’s bike helmets inspected.  All of these programs were key in establishing the trust all three of my kids have with the police.  We, of course, always talked about these visits afterwards and reinforced how the police are our friends and are safe people to go to.  That initial training has always held and enabled us to go to these types of interventions now. 

Within our organization, we have seen firsthand how this type of justice approach has led to positive outcomes.

Within our discussions on Feb 24 we learned there is a provincial strategy for how these teams operate, but your team will also be unique to your particular area, its needs and resources.  There is also, within that provincial strategy, a desire to build knowledge capacity regarding FASD and mental health challenges in general.

As you can imagine, losing this program will create consequences for us.  It is a very clear choice of pay now or pay later.  Policing and justice costs will absolutely rise.  While you might think this is a local story, it is not.  All the mobile crisis intervention teams across the province or the areas that don’t even have teams are being impacted by this decision of the Solicitor General to end funding.  There was a huge call three years ago for these teams and CBC News ran a story on it then as well in Toronto.  https://www.cbc.ca/news/canada/toronto/inside-the-mobile-crisis-intervention-teams-1.4190249

If you are a FASD Advocate and don’t have one of these teams, you want to have conversations with your municipality, your police service board, your MPP and your local police Inspector or Chief.  The current funding from the Ministry comes through the Solicitor General but could potentially come through the Ministry of Health under the Mental Health department. 

Finally, in the Rural FASD Support Network, we speak a lot about inclusivity and accessibility.  In 2005-8, the Ministry of Education did a special education project called Essential for Some, Good for All.  The recommendations from that project were implemented in the Learning for All document 2013 which still defines our educational instruction and assessment methods today.   As I hope you heard in the interview, while this team is essential for our youth and adults with mental health challenges, it is a good for all of our society.  Having this touchstone that brings all of us together as one is what inclusivity and accessibility is all about.

FASD: The Life-saving Benefit of Social Services

In our last blog on the 23 initiatives, we will look at the current status of social support for people with FASD in the province of Ontario.  As seen by the Ontario roundtable report on FASD, the key elements to success already exist.  They just need to be more purposeful with a clear vision and strategy.  With a clear overarching FASD strategy, general knowledge within our province, regular conversations among all parties and eligibility for all necessary supports, the province of Ontario could easily lead the way in creating an inclusive, compassionate and accessible society for everyone.

The Rural FASD Support Network sees its niche as being the people with lived experience that gets the conversations started.  We know we need the help of the Ontario Legislative Assembly to be the one that creates the clear overarching strategy among all ministries and all ridings similar to the one proposed in the U.S. Congress and the province of Alberta.  Expert knowledge comes from our training partners like Citizen Advocacy, Kids Brain Health Network, and CanFASD.  The Rural FASD Support Network and other support groups with their media partners create the regular conversations.  Finally, the positive models of support with access to existing services come from our service partners.  The province of Alberta conducted an evaluation of the effectiveness of their strategy after just seven years and discovered they saved $97,000 per person with their program.  When you consider supporting people with FASD will bring positive outcomes such as less health needs, higher employment rates, larger tax base, greater contributions to our society and less policing and justice requirements, it only makes sense.  

As stated before, successful outcomes for people with FASD happen when they have a community, purpose and support from all.  Within MCCSS, we are extremely thankful for the current support, but need access to other current supports, starting with Developmental Service eligibility.  MCCSS states there is a new definition for developmental disability which will be applied fairly and consistently.  However, FASD is rarely understood as a developmental disability and so the rejection rate for our adults with FASD is extremely high.  And because our Social Inclusion Act of 2008 states it is a privilege to receive services and not a right, we are finding this obstacle to literally be life-changing for adults with FASD and their caregivers.  With the elimination of the children to adult transition through the new MCCSS, the FASD support worker should also be eligible to continue working with their clients instead of having to stop at age 21.  However, we do recognize that would entail additional workers who would need to have adult support backgrounds. These proposals already exist within our Indigenous partners support system.  The Ontario Federation of Friendship Centres has completed their pilot project on their Nutrition program within four sites and has seen the benefit of the program after just three years.  What is important to note is eligibility only requires self-declaration and they receive health and mental health support, employment support, and access to a support group, education and a worker.

The Rural FASD Support Network Indigenous members are not able to access this program as well due to the fact it is only located in four urban locations.

For us, though, if there was one thing that could be done right now, it would be to renew Ontario’s membership with the Canadian FASD Research Network which has currently expired. Just like the Kids Brain Health Network, CanFASD is the key partner in our national strategy development, the main source of FASD online training for provinces, and watchdog of all FASD research within the world.  If an FASD champion at Queen’s Park wanted to make an immediate difference, we would ask you to contact Kathy Unsworth at kathy.unsworth@canfasd.ca to find out what CanFASD could do for Ontario.

In our final two blogs before we gather together on Feb 24, you will get to meet our youth with FASD who will be joining us on this momentous day.

FASD: How Housing leads to Employment

One of the biggest challenges our youth with FASD face is becoming productive and contributing members of our society as adults.  While school can be very challenging, it can provide structure and strategies for success when informed educators and medical personnel are working in collaboration.  During that transition into adulthood, though, the individual with FASD experiences huge changes to their routines and structure.  For an adult with FASD, we have seen when a community with housing and employment opportunities, positive outcomes can be achieved .  Amongst the seven adults with FASD within our membership, we have confirmed what the research says.  When someone with FASD has a stable home with external support and a steady occupation, positive outcomes can be achieved.  When one of these three elements are missing, life can become very challenging.

Just like any adult, most adults with FASD want to live somewhere else besides their parent’s home.  However, it must be an interdependent model as explained by CanFASD’s paper on housing and homelessness.  This model exists in various places including 360 Kids and Participation House in Markham.  It basically consists of having people with disabilities living in an open and inclusive community consisting of their service providers and other members of the public.   This is why the Rural FASD Support Network is supporting the endeavor that Cornerstone Landing and Redwood Homes are proposing in terms of a rural housing model.  Cornerstone Landing is proposing a tiny home village where homeless youth, seniors, members of the public, a community hall and an administrative office are all located together.  Within this village, a supporting municipality is key.  Current codes make this model impossible and require changes at the municipal level.  Having a gathering place for the residents which is ran by the municipality for insurance and maintenance purposes is also key for building the village into a community.  One of the big advantages a tiny home provides over an apartment is cost and sensory processing.  For someone with FASD, these are huge considerations.  Instead of having a huge lump sum cost at the beginning for all funding partners, it could be done in small increments.  However, there are challenges to this model based on current legislature.  This is why we have partnered with Yuergen Beck of Redwood Homes and Cornerstone Landing to lend an additional voice in exploring these challenges and finding solutions.  These challenges include no specific code related to tiny homes or any regulation related to how they are built. 

Having a home and supportive community is not enough.  In the three earlier examples, work opportunities are also provided.  Work provides that same self-esteem, structure and purpose that people with FASD crave.  However, our current system is creating obstacles.  There are limited incentives for employers to invest in hiring people with FASD.  As a result, it is not encouraged to even state the existence of FASD during the hiring process which leaves both the employer and individual at a disadvantage.  Finally, when you consider that someone with FASD has a 74% likelihood of being unemployed compared to the national average of 6%, we need to build a system that encourages hiring people with FASD rather than sending them to social assistance.  As our adults with FASD will tell you, they have unique strengths that can benefit our economy.  Within the adults of the Rural FASD Support Network, we have a baker, a horse trainer, a dishwasher, a tent installer, a homemaker, a musician, and a computer programmer.  However, we also have several unemployed individuals looking for work that is sustainable for them and youth who can’t get into college because of the theory requirements.  While hands-on work is a strength for them, the lack of apprenticeship opportunities removes that possibility.

In our pursuit of inclusivity within our society, when adults with FASD have support, structure and purpose, they too become valuable contributors to our society.  We are thrilled to have Yuergen Beck, Shelley More, Karen Huber, Cassie More, and Rick Graham come with us on Feb 24 and share their expertise.  If you have any questions, please feel free to contact us at ruralfasd@gmail.com.

FASD: Connecting Health and the Solicitor General

One of elements the Rural FASD Support Network has focused on is breaking down the silos that exist in our society.  It has been through this desire that we have seen the benefits of different organizations working together including our families, our service providers, our FASD workers and the ridings across this province.  Because our voting membership consists solely of those with FASD and their family members, we currently have the pleasure of serving in an advisory capacity in our local and national Mental Health, Policing, Education, Research, Housing, Employment, Support Services and Health sectors.  Through this advocacy, we would like to bring to your attention a link between the Ministry of Health/Mental Health and the Solicitor General which may not be well-known.

When mental health supports are lacking for those with FASD, adverse outcomes such as trouble with the law and incarceration become much more likely as our youth and families have discovered.  This is part of why we reached out to our policy leads at Citizen Advocacy and CanFASD to develop legislative suggestions for these particular ministries focusing on education and capacity building. 

The first thing we learned was there is not currently an OHIP code for diagnosing people with FASD which makes determining just how much impact FASD has on our province challenging.  However, we do know from specific studies that 3-5% of our population is a very realistic estimate.  The other challenge that comes from not having an OHIP code is it limits interest from our medical community in building diagnostic capacity.  In Alberta, British Columbia, and Manitoba, there is a diagnosing clinic for every 1.5 million adults.  In Ontario, that would require about 9 clinics to meet the population need.  There is progress being made in educating our medical personnel and correctional officers but it is limited to particular areas within the province.  Citizen Advocacy has developed a training model for these sectors and has delivered it to over 4,000 people within the province.  We have also heard from our mental health partners that there is a difference between childhood trauma and adult trauma.  Our current mental health models do well with short term support but children with FASD and/or have been adopted tend to require much longer support.  We also learned that mental health challenges is now considered to be a primary characteristic of FASD and not a secondary characteristic due to the very high prevalence among youth and adults with FASD.

While there is more emphasis being put on FASD training within our medical personnel in school, more education is needed with our current medical personnel.  This is why CanFASD created the series of videos with Dr. Hanlon-Dearman and Citizen Advocacy.   Our obstetricians and nurses serve as our frontline workers for FASD prevention and have a huge impact on future outcomes for these children.  At the same time, studies have shown our incarcerated population has a high prevalence for FASD.  When you consider that correction tends to use behaviour modification techniques which someone with FASD can’t understand, it is not surprising the prevalence is so high and further education on FASD is needed. 

In Lanark County policing, there has been an understanding for a while that mental health can impact behaviour.  Traditionally, the local police would take someone to the emergency ward if they were having a mental health crisis.  However, the follow-up that was needed was missing.  The Smith Falls Police made the decision to partner with Lanark County Mental Health for two purposes.  Their nurses provide mental health training to officers on when to call them and the officer will bring in the nurse to do an immediate intake on site.  The nurse will then provide the follow-up.  However, this partnership is based on a one year grant and needs further financial support.  When multiple partners collaborate, it is fabulous to see what can be achieved.  To learn more about this model and our partners, please speak to us on Feb 24 in Room 230 starting at 10am and we will be happy to introduce you to these service providers.  We will also have a special presentation starting at 1pm on this subject as well.  To request a private audience, please contact Rob at ruralfasd@gmail.com.

Panel Presentation on FASD: Linking Mental Health and Justice on Feb 24 at 1pm

In 2004, Dr. Streissguth et al released a ground-breaking study on FASD that shocked everyone.  Within this large sample group of 415 adults with FASD, it was discovered that 80% of these adults went through the foster care system and were extremely vulnerable to five primary adverse outcomes.  The study showed generally 50% of these adults experienced disrupted school experiences, trouble with law, confinement, inappropriate sexual behaviour, and addictions.  The study also showed, however, early intervention while they are a child will reduce those prevalence numbers of 50% to 12%.

The youth within the Rural FASD Support Network know first hand the legitimacy of this study.  Most of our youth have came through the foster care system, experienced all five adverse outcomes multiple times and have found their success through interventions and support.

CanFASD has also done multiple studies since 2004 on this subject of preventing these five adverse outcomes and just released its latest paper by Dr. Pei and others.

We understand there is a direct link between Health, Education, Justice and MCCSS as it applies to FASD.  The U.S. Congress in the House of Representatives have introduced a bill which passed the first two readings with support from both parties and has now gone to committee.  In their bill which states 5% of first graders in America have FASD, they have linked Health, Mental Health, Education, Justice and Social Services together.  

There are also four youth in our support group who have experienced firsthand how mental health and justice go together.  With FASD, life for a teenager can be very overwhelming at times.  In those situations, what we have seen is an overpowering desire to escape pain and not really understanding why.  Kim Barthel, Occupational Therapist and Counselor to Theo Fleury, former NHL player, has proven that traumatic events that happen to a infant will remain within their body’s memory.  When you consider an adopted child journeys through traumatic events in their life and their brains with FASD is not physically equipped to deal with the trauma, it is not surprising that 90% of individuals with FASD have mental health challenges.  However, when they don’t get proper support, they eventually become stigmatized and isolated.  They are now vulnerable to the five primary adverse outcomes.    Three of the four families have been able to turn their lives around because of one primary reason.  They are surrounded by strong communities including their relatives, their support group, and their service providers who have supported them in an informed way throughout these challenges.  Stephane Grenier has demonstrated the importance of peer-based mental health education, and our support group reflects this complementary role. 

This is why the Rural FASD Support Network is thrilled to now announce a special panel presentation at Queen’s Park in Room 230 at 1pm on FASD: Linking Health, Mental Health and Justice as part of the Feb. 24 FASD Awareness Day at Queen’s Park.  Dr. James Reynolds of Queen’s University, Dr. Kaitlyn McLachlan of Univ. of Guelph, Lorena Crosbie, Executive Director of Children’s Mental Health of Leeds-Grenville, Chief Mark MacGillivray of the Smiths Falls Police, Rebecca Fromowitz, Executive Director of Lanark Mental Health and Skylar More, adult with FASD will share their expertise in this area.  These six individuals will show with evidence why supporting mental health creates positive outcomes for everyone in society and in particular youth with FASD.  

Aidan Moore, one of our youth who recently had his first show in Almonte, will also be recording the presentation and will be happy to share it with you afterwards if you are unable to stay.  If you want to learn how policing and mental health are supporting each other with proven positive results in Lanark County and how it could be done in your riding, we would encourage you to stay with us after the noon presentation.  Boxed lunches and wraps will also be served by Dana Hospitality.  We look forward to seeing you there and thank you for all your positive comments.  For any questions, please feel free to contact Rob at ruralfasd@gmail.com

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.

CanFASD series on FASD FAQ's Part 5 of 5

In the final video of CanFASD’s series on FASD FAQs, Dr. Hanlon-Dearman is asked “What are the most important things service providers should know about supporting people with FASD and their families?”  Dr. Hanlon-Dearman starts by saying service providers need to be informed and educated about FASD.  The Rural FASD Support Network supports this statement and believes it's paramount that education and awareness extends to the general public and eliminate stigma.  People with FASD are served by waitresses, gas station attendants, bankers, attorneys, and anyone else in the general public including yourselves.  People with FASD are also in the media and interact with people of Ontario in all walks of life.  Life with FASD is challenging enough without having to deal with misinformed stigma.  This is why one of the Rural FASD Support Network’s mandates is to provide education and awareness to all sectors of society and are seeking your help in getting this message out.  Other organizations such as CanFASD and Citizen Advocacy have similar mandates.  This is why the province of Alberta has contracted CanFASD to provide online training to all Albertans and it is our hope that Ontario would look to emulate this best practice.  Citizen Advocacy has been leading the way by training over 4,000 service providers in the Ottawa area as well.

Dr. Hanlon-Dearman goes on to say it is also important to recognize each individual with FASD is a unique individual and may change over time.  Within my family alone, our three children all have FASD, but are completely different from each other.  They all have completely unique strengths, completely unique needs, completely unique personalities and our parenting style is unique to each child.  Each of the 90 families represented by our organization are unique to themselves as well.  This is why we are bringing 16 different families and 17 different infants, children, youth and adults with FASD with us to Queen’s Park on Monday, Feb 24.  The uniqueness of each of our families will be obvious.  In a couple weeks, we are expecting to share with you a profile of each of our children and youth outlining their accomplishments, their dreams and their challenges.

However, we have also seen common obstacles all of our families have had to overcome.  Within our monthly support group, we have been able to problem-solve several issues for our families through lived experience.  The issues we haven’t been able to resolve are primarily due to current legislature at all three levels of government.  As a result, we used the Ontario FASD Roundtable Report of 2015 as the foundational document and have partnered with the Canadian FASD Research Network and the Policy Department of Citizen Advocacy to identify where the current challenges at a provincial level now lay.  In our last four blogs, we will share with you what those current challenges are and provide a starting point for discussion on potential solutions.

We are thrilled to be sponsored by MPP Clark and supported by MPP Taylor in helping bring awareness on FASD to yourselves and the general public.  Once again, we will have displays setup with FASD service providers and support group leaders in Room 230 starting at 10am on Monday, Feb. 24 with speakers and greetings starting at noon and finishing around 12:30.  Lunch will be provided while several youth with FASD will be sharing their stories.  We thank the 15 MPP’s from three parties who have already confirmed their attendance and we look forward to having further discussions with you.  Please know as part of our organization, we have ten teams of three people each available to meet during the morning and/or afternoon on Monday, Feb 24 as well.  Within these teams, you will have the opportunity to listen to an individual with FASD share their story, a Rural FASD Support Network spokesperson, and an expert service provider who works within your responsibility.  To confirm your attendance or to book a private meeting, please email Rob at ruralfasd@gmail.com and it will be our pleasure to meet with you.