Wednesday 20 May 2020

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.  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.

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:

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 and the corresponding announcement from the World Health Organization  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  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  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.                                                                                                                               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.

Monday 23 March 2020

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
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.

Tuesday 10 March 2020

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. 
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.
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.

Saturday 25 January 2020

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 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.

Sunday 19 January 2020

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

Saturday 11 January 2020

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

Sunday 5 January 2020

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

Saturday 14 December 2019

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 .

Monday 9 December 2019

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

Saturday 30 November 2019

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 and it will be our pleasure to meet with you.

Saturday 23 November 2019

CanFASD series on FASD FAQ's Part 4

In the fourth video of the CanFASD series for Foundations in FASD, Dr. Hanlon-Dearman answers the question, What would be an ideal multidisciplinary team and who should be involved?,  Dr. Hanlon-Dearman replies the team should include a pediatrician, possibly a geneticist, speech-language and occupational therapist, a social worker, a coordinator, and an FASD educator located within the person’s community.  In Manitoba, they have established one team to serve the entire province of Manitoba located at the Winnipeg Children’s Hospital.  Within the hospital, they have five developmental pediatricians trained in diagnosing FASD, two geneticists who also can diagnose, two psychologists, one occupational therapist, one speech-language pathologist and one social worker of whom can provide all the necessary assessments, an educator who does the follow-up, a researcher and four admin.  However, the key is they also have manager with ten coordinators located throughout the province in the local communities to do the initial referrals. 
Within Ontario, there is no clinic or hospital organized in this manner.  While all these services do exist, they are all isolated from each other.  This is why the Ontario Roundtable Report on FASD identified the establishment of multidisciplinary clinics as being a priority.
To understand the current system, the following true story is based on two of our original members within the Rural FASD Support Network.
The story begins with a CAS Social Worker who placed two sisters ages 6 and 4 in an adoptive home and provided a ten-page social history for each.  There was no information about milestones or development but references made to alcohol usage, neglect and possible abuse.  However, nothing was ever proven in court so could not be stated definitively.  At age 6 and 8, the girls were struggling with reading so a speech language assessment was done by the school and services were provided.  At the same time, an IEP was developed and intensive academic support was given at the school.  Minimal gains were being made so the parents hired a psychologist to do an academic assessment to try and figure out what was happening at a cost of $2000 each.  With this information, slow and steady gains were made and the girls passed their courses.  In high school, things took a turn for the worst for the older sister.  Extreme mental health crisis was seen, police were involved, trips to the emergency ward started to happen, both parents had mental health breakdowns and no solutions were being found.  A referral was made to Children’s Hospital of Eastern Ontario through girl’s pediatrician where a geneticist took the CAS social history, the school’s speech-language report, the private psychological report, the emergency room reports from the parents, did her own assessment and gave a diagnosis of FASD.  The diagnosis went back to the pediatrician and the parents became their own social workers.   After the older sister turned eighteen, the pediatrician discharged her, and she started seeing a general practitioner who through their clinic assigned a social worker to her.  At the same time, an FASD worker through MCCSS was assigned to her who supplements the parents as a coordinator.  Today, the parents and the Rural FASD Support Network now have the role of FASD educator with the Canadian FASD Research Network or CanFASD as the researching organization.  The nine roles listed by Dr. Hanlon-Dearman were provided by nine different organizations in this family’s case.  Based on the sharing of stories with the Rural FASD Support Group, this is regrettably a very standard story in Ontario.
As part of our mandate, we are thrilled to be sponsored by MPP Steve Clark and supported by MPP Monique Taylor to bring FASD education and awareness to Queen’s Park again on Feb 24 from 10-1pm with remarks and a presentation by youth with FASD at Noon in Room 230.  We are anticipating ten different support groups from Sudbury, Owen Sound, the GTA, Halton, Ottawa, Belleville, Pembroke, Waterloo, Kingston, and Guelph joining us to share how they are bringing FASD education to their local communities.  We would ask to please confirm your attendance with so we can ensure the caterer has enough food for everyone.  If you would like to request a private meeting after 1pm on Feb 24, please speak to Rob at  Finally, we would like to thank MPP’s Bisson, Gelinas, Hassan, Kanapathi, Kernaghan, Kusendova, Pettapiece, Sabawy, and Sattler for confirming their attendance with regrets from MPP Mitas.

Sunday 17 November 2019

CanFASD series on FASD FAQ's Part 3

In this third video of the CanFASD series of five which is located in CanFASD's Foundations in FASD online course, Dr. Hanlon-Dearman answers the question, “Why is it so important to use a multidisciplinary approach to diagnosing FASD?”
Dr. Hanlon-Dearman explains that FASD is a multifaceted disability impacting all parts of the individual’s life and requires multiple supports.  She starts by explaining the purpose of having a medical practitioner doing the diagnosis based on the 2015 Canadian Guidelines.  It is important to note that diagnosis still requires documentation of alcohol usage during pregnancy by a credible source.  And because there is currently 428 comorbid conditions associated with FASD, a knowledgeable practitioner is vital.  She also refers to the importance of a psychological assessment to establish cognitive and adaptive functioning.  She goes on to explain that someone with FASD may have high cognitive functioning but tends to be very low on adaptive functioning.  This means someone may know how to go into a store and make a purchase, but is unable to do so because of the sounds, smells, sights.  They will likely have no understanding of correct change so are dependent on the cashier to do it correctly.  They will likely be unable to read the signs correctly and become very anxious and have an inappropriate public display.  Our current criteria of eligibility for Developmental Services says both cognitive and adaptive must be below the 5th percentile.  Most people with FASD will have cognitive in the 5-15 percentile and adaptive below 0.1 percentile.  This is why people with FASD don’t currently receive any support.  This denial of services doesn’t happen to the same extent to people with autism who will also have higher cognitive levels and low adaptive levels because a diagnosis of autism is deemed as an eligible diagnosis.  Dr. Hanlon-Dearman also explains the importance of speech-language pathologists.  SLP’s determine the communication skills of an individual with FASD including their ability to pronounce words.  A recent study on speech impairments for boys with FASD ages 4-10 determined 90% of them had a speech impairment at a level of disorder instead of delay.  This means without intensive and prolonged support, these boys are at a high risk of poor social skills, isolation, trauma, and later severe mental health challenges.  In our area of the Ottawa Valley, the only publicly funded organization providing speech support from ages 5-18 is the Champlain LHIN which will not do so without a medical diagnosis and doctor recommendation.  So you can’t get an FASD diagnosis without the speech assessment and you can’t get a speech assessment without an FASD diagnosis.  Dr. Hanlon-Dearman finishes by speaking about the role of an occupational therapist.  They determine motor skills and sensory profiles which tends to be very extreme for people with FASD.  Once again, the Champlain LHIN is the only publicly funded organization providing this service and again require the diagnosis first.
As a result, the only current option to diagnosis for FASD is through private means which on average is about $3000 to $4500 per person.  It also takes another $5000-$7000 a year in private support to have the individual achieve successful outcomes.
Knowing all of these facts, it becomes obvious why it is difficult for anyone to access supports in the province of Ontario and why the Rural FASD Support Network is committed to starting the conversations needed to make a change for the better.

Sunday 10 November 2019

CanFASD series on FASD FAQ's Part 2

The second CanFASD video which is located in CanFASD's Foundations in FASD online course, Dr. Ana Hanlon-Dearman answers the question “If we want to lower the prevalence of FASD, what are the conversations we should be having?” 
Dr. Hanlon-Dearman starts by speaking about how we are currently determining FASD prevalence.  Without a current tracking mechanism such as an OHIP code to determine general prevalence, we are dependent upon specific research projects targeting certain sectors of our society.  We do know 3-4% of children ages 5-7 in the 905 area have FASD We know about 10-18% of inmates have FASD and 3-11% of children in care have FASD and we know every sector of society where alcohol is being consumed has the potential of children being born with FASD..
Dr. Hanlon-Dearman goes on to speak about how we need to support women in our society to have healthy pregnancies.  The key point she makes is that we need to do more than just education.  We have reached a point in our society where most people know drinking alcohol during pregnancy is dangerous.  However, without a strong inclusive community and support, we are putting women at risk.  The Ontario Federation of Indigenous Friendship Centres understand this and are doing something about it.  Through their Nutrition Program, they are supporting their young women with a sense of belonging, acceptance and healthy options.  As demonstrated through their report, it is successfully lowering FASD prevalence among their population.
The Rural FASD Support Network is doing the same.  By offering access to community supports, providing a safe and compassionate forum for discussion, respecting where everyone is at in their personal journey, giving potential solutions to current challenges, and having fun together, we truly are an inclusive community consisting of 87 families, 376 members of both adults and children with FASD and their caregivers, support staff, service providers, fellow advocacy groups and researchers.
However, our largest obstacle to building community is a lack of supported housing.   Based on feedback from our local partners of service providers, municipalities, and contractors, we believe a community of tiny homes where seniors, young families, and individuals with disabilities live together with a community building where training, events, medical support and daily living needs are provided is the model we should be pursuing similar to the Markham model.
An inclusive and assessible community that uses all the strengths of their residents to provide for their needs creates that strong mental health and sense of belonging.  It encourages family and community development rather than isolating people in their domiciles.  We believe the rural model of helping our neighbors is the environment where our adults with FASD excel.  We believe having face to face conversations is always better than texting through phones.  We believe the best marketing is word-of-mouth.  And we believe that when you combine people together for a common cause, there is no limit to what can be accomplished.
This is why the Rural FASD Support Network is thrilled to be sponsored by MPP Steve Clark to come to Queen’s Park for lunch on Monday, Feb. 24 from 10am to 1pm in Room 230.  We also thank MPP Monique Taylor, MPP Randy Pettapiece, and MPP France Gelinas for already confirming their attendance.  You will have the opportunity to meet 21 individuals with FASD from ages 3 to 36 as well as their caregivers, support staff and service providers.  We are also being joined by Dr. James Reynolds, Dr. Kaitlyn McLachlan, and several other service providers.  We are also available to meet privately afterwards.  To confirm your attendance for catering purposes, please reply to

Wednesday 6 November 2019

CanFASD series on FASD FAQ's Part 1

CanFASD recently gave the Rural FASD Support Network permission to use the series of videos Dr. Ana Hanlon-Dearman created where she answers some of the common questions people with Fetal Alcohol Spectrum Disorder (FASD) and their caregivers have. In the first video which is located in CanFASD's Foundations in FASD online course, Dr. Hanlon-Dearman answers the question “When someone gets their diagnosis of FASD, what should they do next?”

Within this video, Dr. Hanlon-Dearman speaks to the importance of a strong community. For a child, that community includes their school, their pediatrician, their counselor, and their social worker. The Rural FASD Support Network has hosted two information forums for over 150 area service providers in the past year using the model Citizen Advocacy Ottawa has used in training over 4500 service providers over the past five years. The benefits of this education has led to the Catholic District School Board of Eastern Ontario to develop a multi-disciplinary team to support students with FASD successfully with the evidence to prove it. However, when you consider that only three publicly funded school boards in Ontario have a strategy on how to support students with FASD, further awareness is needed.

While Canada leads the world in FASD diagnostics having established the 2015 Guidelines, there are only four hospitals in Ontario who can diagnose adults with FASD. The biggest reason for this is a lack of an OHIP code for FASD diagnosis. Alberta and British Columbia tracks FASD prevalence and have proven the effectiveness of multidisciplinary clinics dedicated to supporting those with FASD. They have also seen the financial benefit of doing so. Since adopting their FASD strategies ten years ago, they have seen decreases in the cost of health, education, correctional facilities, employment welfare, mental health supports, and children protection services. CanFASD recently released a study done by Dr. Popova who used evidence-based research to determine FASD is costing Canada 1.8 billion dollars a year annually or Ontario $600,000,000 annually. It should also be noted that there are approximately 300,000 Ontarians with FASD and 800 of them are being diagnosed annually at a cost of $4000 per person of which $2500 must be covered by the individual.

Dr. Hanlon-Dearman also speaks to the importance of using community services. However, in Ontario, because a diagnosis of FASD does not meet the eligibility criteria for Passport Funding unlike intellectual disabilities and Autism, there are extremely limited options for support. This is why the Rural FASD Support Network is asking for the eligibility criteria be changed to include FASD. Additional funding is not necessary according to our community support services since the programming and facilities already exists. Only the size of the community will change.

This is why the Rural FASD Support Network is pleased to be sponsored by MPP Steve Clark and supported by MPP Monique Taylor to continue this conversation at Queen’s Park on Monday, February 24 from 10-1 in Room 230. This is a societal stakeholder issue that requires depth of conversation and collaboration and we are pleased to be part of that initiative. We will be joined by individuals with FASD who are willing to share their stories and service providers who have solutions. The Ministries impacted the most by FASD include Health, Education, MCCSS, Mental Health, Housing, Indigenous Affairs, Rural Affairs, MTCU, Finance, and Solicitor General. The Rural FASD Support Network have specialized teams for each of these ministries and are available to meet after the presentation. To schedule those meetings, please contact us at

Sunday 23 June 2019

Rural FASD Support Network updates

It has been a while since our last blog primarily because of our vlogs.  However, we have had some new developments since our last blog that we wanted to update you on.
If you have not seen our new Youtube channel, please subscribe.  We are now posting our monthly speakers there and you might find their presentations to be useful.  Last week, we heard Mallory and Megan, our local FASD workers, share what they have learned this past year working with us and this community.
We also had Michael Jiggins, Executive Assistant to Minister Steve Clark, in attendance and share Minister Clark's perspective as well.  We certainly appreciated the fact that he picked up on the challenges we face, the lack of diagnostic capacity particularly around sensory profiling, the importance of funding support groups and their commitment to continue working with us.
At the end, we celebrated our first anniversary with greetings from Premier Ford and cake.  Hard to believe it was only ten months ago the six of us were sitting around our kitchen table figuring out how to proceed.
We are also thrilled to announce that our attorney has submitted the paperwork for our non-profit designation and our constitution is finished and ready for our AGM in September.  This non-profit designation will enable us to receive funding from private foundations, United Way and municipalities.  We know our most effective advocacy route is to physically show up at Queen's Park and speak directly to MPP's and Ministers.  We also know several of our individuals don't have the private funding necessary.  When you look at our financial report, we don't have any money going to admin costs or facility cost.  100% of the money goes to those with FASD.
Beckwith Township and Barker Funeral Home are hosting a charity ball tournament for us in August.  Our children will be running the canteen and we will be passing out material to everyone who comes.
Camp Connections is bringing us in to train their staff on FASD and Providence Point is hosting their camp in July and hosting us in August.  Following this training, they will be accepting applications for our children to attend camp this summer and all the following years.
FASD Ontario went through some transition but has now really ramped it up.  Check out the discussion forum and they are now providing French and Indigenous resources.
CanFASD is busy organizing the next international conference in April.  Focus will be on adults and caregivers.
Derek and I also had the opportunity to share our stories with Minister Fullerton which was appreciated.  We don't normally meet people who are as informed about FASD as Minister Fullerton.  She was actually able to pick out which of my children have the sentinel features.
I recently did a presentation on Personal Wellness.  You may not be aware but in Canada, elementary teachers are the fourth most likely occupation to witness violence behind military, police and firefighters, teachers have the highest alcohol consumption per occupation and administrators tend to have a high divorce rate.  Personal Wellness is something educators struggle with.  As we know 75% of caregivers with complex needs children will experience a mental health breakdown at some point in their lifetime , I see a lot of parallels between being an educator and a caregiver in terms of stress and mental health challenges.
Thank you to all that have been reaching out.  It really does mean a lot to know we are doing this journey together.  We are humbled by the amount of people who have viewing the video Vanessa and the National Post did last month.