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.

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 ruralfasd@gmail.com 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 ruralfasd@gmail.com.  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.

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, https://www.youtube.com/watch?v=8npYyC2nmOE&list=PLBhdT-nylDEM80KSG-J4vmfyE5L8q7WwW&index=3 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.

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?”  https://www.youtube.com/watch?v=z2JFVSonH-I&list=PLBhdT-nylDEM80KSG-J4vmfyE5L8q7WwW&index=3&t=0s 

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 https://canfasd.ca/wp-content/uploads/sites/35/2018/05/2018-Popova-WHO-FASD-Prevalance-Report.pdf. We know about 10-18% of inmates have FASD and 3-11% of children in care have FASD https://canfasd.ca/wp-content/uploads/sites/35/2018/08/Prevalence-2-Issue-Paper-FINAL.pdf 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.  https://drive.google.com/file/d/0B1sCiqNTFMNyNlR6dnVfNnlKY2hFWWwza1ZlNDd3LUVlb3RJ/view?usp=sharing

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 ruralfasd@gmail.com.

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?” https://www.youtube.com/watch?v=eRHobJg9ZcE&list=PLBhdT-nylDEM80KSG-J4vmfyE5L8q7WwW

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. http://fasd.alberta.ca/documents/year-7-evaluation-key-findings-and-recommendations.pdf
https://www2.gov.bc.ca/assets/gov/health/managing-your-health/fetal-alcohol-spectrum-disorder/fetal_alcohol_spectrum_disorder_building_strengths.pdf 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. https://canfasd.ca/wp-content/uploads/sites/35/2016/05/IssuePaper_CostFASD-Final.pdf 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. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0060434

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 ruralfasd@gmail.com