Provincial FASD News and DTC success!!

This week's blog is just focusing on various FASD news from the province including funding for support groups, SEAC appointments, MedicAlert Pilot Project and DTC info.

First, though, is the funding for support groups coming from Health Nexus.  The following announcement was sent earlier this week.  The webinar will walk you through how to apply and the deadline is Oct. 24.

We are pleased to announce that we are now accepting applications for the FASD Family/Caregiver support group funding!!

An informational webinar to assist with the application process has been scheduled for October 11, 2018 @ noon. 

Funding Details

• Up for $4,500 is available to create a new FASD Support Group or to further develop existing FASD Support Group activities across Ontario.
• Deadline for the first round of applications is October 24, 2018 at noon.
• Details of the second round of applications will be coming in early 2019. 
• The application package and funding details will be available in French shortly.

The below application materials can be found at https://en.healthnexus.ca/FASDSupportGroups

• Guidelines for Funding

• FAQs
• Funding Application Package

For additional information, please contact:

Angela Geddes, FASD Project Coordinator

a.geddes@healthnexus.ca

416-408-6868

1-800-397-9567 x 2292

It is important to note Health Nexus is tasked with developing new support groups as well.  The Rural FASD Support Network is applying for funding on behalf of the Smiths Falls FASD Caregiver Support Group and is hoping to be applying for support groups in the Lanark, Almonte, Kemptville and Winchester as well within the next year.  Each one of these groups is eligible for the full $4500 and size doesn't matter.  If you and a couple other people in your area want help getting launched, this funding can be used for that.  For us, child care and weekend meetings are non-negotiable.  It is just too hard to meet otherwise.  Finally, this funding is for now until March.  We apply again in April for another round of funding.

There was also an announcement sent out from Mary Cunningham of FASD One cunninghammary@rogers.com that if any individual wants to serve on an SEAC as a FASD rep, she will do the appointment.  Please note, though, if you are part of a current support group who is registered with Health Nexus, your local leader can also do the appointment.  Health Nexus is a provincially recognized organization and your registered support group is considered to be a local chapter.

Medic Alert just put out this announcement they are looking to expand their program across the province.  If you have a teenager, young adult or adult living with FASD, please consider applying for this program.  We constantly hear from our local first responders what a difference it makes for them when they know the individual they are helping is living with FASD.

MedicAlert FASD Pilot Program

MedicAlert Foundation Canada is a registered Canadian charity that proudly embraces our mission to put every Canadian in a position to benefit from high-quality health information at time of need. Since 1961, we’ve helped protect over 1 million Canadians.

MedicAlert is on their 3rd year of running our pilot FASD program.  This was created in November 2015 in partnership with the Anishinabek Police Service and Maamwesying North Shore Community Health Services to help those living with FASD in the community.  MedicAlert is working towards expanding this program nationally.This pilot program intends to achieve more equitable treatment for persons living with FASD by raising awareness among emergency first responders on how to approach these individuals as identified through their MedicAlert ID. As you know, FASD isn’t always recognizable to those who don’t know the signs.  With the FASD program, there’s an effective way to identify the subscriber, understand how to de-escalate a potentially volatile situation and immediately reunite the subscriber with family or caregivers.

Cost to join the program is FREE. This includes one year of MedicAlert service, the unique FASD ID, shipping, registration and tax. 

For customer service support, please contact Jennifer Cuthbert, Customer Service Manager of MedicAlert at 1.866.679.3217 ext. 1250.

Finally, some of you know that I had applied for the Disability Tax Credit for all three of my children and two were rejected.  After reapplying and being rejected again, we filed an objection to the decision to the Appeal Branch of the CRA.  We just received notice that both children have had their decisions reversed by the Appeal Branch.  Interestingly to me, the Appeal Branch is supposed to speak to our representative, in this case our accountant, but they did not.  They simply took the letter I wrote describing why I thought the decision was wrong and reversed it.  And they gave us six years instead of the normal three before we need to apply again.  I'm not going to share the letters I wrote as it is very personal to my son and daughter but I focused on the diagnosis they have according to the DSM-5, how it impacts their living, and how it affects their mental functioning.  I used this website which was extremely helpful.  http://www.fightingforfairness.ca/content.php?navID=8  I also wrote the letter using the advice that I needed to describe what life would look like as if my children had no support at all.  

The Rural FASD Support Network continues to grow in its advocacy.  Discussions continue with potential sponsors and garnering non-profit status.  We also received notice from MPP Hillier's office that they are continuing conversations with Minister MacLeod on our behalf and working toward getting an audience for us through the public consultation process.

The Mystery of Special Education in Ontario

In the field of Special Education, September is always the busiest month of the year.  The first month, the school admin are finalizing staff and class lists, resource teachers are speaking with classroom teachers and educational assistants about special needs students, classroom teachers are figuring out their students names and what their schedule looks like, and support staff are learning the students and how to best support them.  In my experience, nothing really gets finalized for the year until Thanksgiving weekend.  Students are still moving, teachers are determining IEP’s, and educational assistants are getting moved around. 

I am constantly reminded of how much dedication, passion and care my teaching colleagues possess.  I know lots of teachers who constantly work 55-60 hours a week.  They arrive an hour early, stay 30-60 minutes after, and do all their grading and lesson plans on the weekends.  They will have multiple phone calls every week, 200 papers to grade, 60 different lesson plans, and make a thousand decisions in a week.  And they do it with grace, compassion, and respect for every student in their class.  

I share this because collaboration with your school is always the best route to advocacy.  I know having to re-educate the school staff every year is frustrating but it is necessary.  When my wife and I are working with our children’s staff, we always have two key points in mind.  One, we will have one big ask that is the highest priority for the year.  This year, we want to see our son’s reading level increase by two grade levels.  We won’t determine how that is to happen.  We leave that to the teaching professionals to figure out.  Second, we only ask for things the school can deliver.  We will ask for a quiet learning environment, a resource teacher who understands FASD, board support people who understand ABA, behaviour and sensory needs, a classroom teacher who maintains routine and establishes relationship, admin who understand the difference between will and frustration, and regular honest communication between staff and us. 

There are two facts most people are not aware of regarding special education.  The first fact is special education in Ontario has not been revised since 1999.  When you consider in 1999, we were still institutionalizing our special needs children for the rest of their lives, we are using archaic procedures and policies as the basis of special education.  Most people don’t realize IPRC’s came about because schools used to deny entrance to special needs students.  The IPRC process came about to stop that practice.  That is why in the IPRC there are two things determined.  If the student is identified with an exceptionality, then they must be placed somewhere within the school system in the environment that makes the most sense.  However, the Education Act was amended in 2008 to eliminate the possibility of students being denied entrance due to an exceptionality.  And now, we have accessibility laws that take it even further.  This is why most school boards are easing out of the IPRC process and going straight to IEP’s.  There are now other laws that accomplish the exact same thing as an IPRC. 

The other thing most people don’t realize is IEP’s only impact grading.  The IEP determines how the student gets graded for their report card.  And grading is determined solely by the teacher and their professional judgment.  The principal, the resource teacher, any school board personnel can advise the teacher, but they do make the final judgment as to how the student will be graded. 

So how does educational assistant support get determined?  The Ministry of Education establishes that criteria.  The criteria is the students must have two of three particular needs.  They must have a medical need such as feeding, toileting, mobility, breathing supports, a safety need such as a lack of danger awareness, regular violence, regularly running away, or use of weapons, or a functioning need such as lack of social skills, communication, or intellectual challenges.  Interestedly, this criteria is exactly the same for Developmental Services and Community Living.  In other words, educational assistants are for individuals who live fully dependent lives.  Now there has been times in my children’s lives where they were fully dependent on us and their support structure to function.  During those times, an educational assistant was and is necessary.  However, the goal is always to eliminate the need for the educational assistant and have them live interdependent lives with safe places, good people, proper strategies and calm environments at a grade level they can do independently.

So what do you do if you can’t get the collaboration you need from the school?  The IPRC meeting can be used for that purpose as well.  The IPRC meeting can bring the principal, resource teacher, guidance counselor and classroom teacher together with you and your advocate.  During the discussion involving the identification, you can explain what FASD is, what it looks like and why it should be defined as a physical disability involving the brain.  During the placement discussion, you can talk about the need for resource teacher involvement and possible educational assistant support.  And if one of the members leave or aren’t present during the meeting, you can refuse to sign the paper and request a second meeting in writing and make it clear all three people need to be present.  Ideally, though, the school should respond positively to a simple verbal request to meet.  An IPRC request should be used with discretion.  If you have a concern about the class, speak directly to the teacher and express the concern.  If you feel you want to speak to resource or the principal because your conversation with the classroom teacher wasn’t fruitful, always do so.  In my opinion, an IPRC request should be used after 2-3 attempts with the classroom teacher, resource teacher and principal have been made and your clear and simple request is being dismissed.  In my experience, it loses its impact if it gets used frequently.

The school system is very large and very complex at times.  However, it doesn’t need to be.  Know your child, learn how to collaborate with your school and keep it simple.  Pick one goal at a time and focus on it.  Remember, it is not a sprint, it is a journey and even when things are bad, you are still gaining insight into long-term solutions.

Rural FASD Caregiver Support Group launches

The Rural FASD Caregiver Support Group physically launched in Smiths Falls, ON today with a livestream and recording of their speakers.  Shelley More began with a timeline of how the Group got to this point, introduced their executive members and finished with their mandate, vision, and mission.  Tanya Eichler spoke next with a short talk on "What does FASD look like?"  Wendy Reed and Malcolm McIntosh shared their life experiences as caregivers of young adults and adults living with FASD.  To watch the entire presentation, go to https://www.facebook.com/robert.more.794/videos/1949415728458547/  or listen to the entire presentation at http://www.driveplayer.com/#fileIds=1uSaxlG4soQxm3syDSApzBFBqPjmvzq0M&userId=102324156331647622331

We had 45 caregivers, service providers, members of the general public and children in attendance.  We were particularly excited to have Open Doors staff who are in charge of Children's Mental Health in Lanark County and folks from Citizen Advocacy, Kids Inclusive and the Public Health Unit.  Calvary Bible Church also brought folks to help with child care and welcoming.  We will meet again next month on October 20 at 10:30am at Calvary Bible Church in Smiths Falls where I will be speaking about our educational system and how to advocate for what your child needs.  We will livestream again so if you can’t attend, feel free to go to our Facebook page to watch.  https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks  Going forward, we will have two parts to our meetings.  We will start with an educational piece which will be livestreamed for about 30 minutes.  The second half will be completely private and confidential with no recording of any type and reserved to just the caregivers.  This time will be an opportunity to ask and talk about anything going on in people’s lives.  Some of the feedback given included comments on how informative Tanya's presentation was, how powerful Wendy and Malcolm's stories are, how well organized everything was, and amazement at how much has been done in two short years.  Most important to us, though, were the comments on how nice it was for the kids to just have fun and for us to be with those who get it.

We also had two more partners help us with bringing awareness to our local area with Hometown News publishing a local feature about the launch  https://drive.google.com/open?id=1J8QjnA94NBd9_qIcl0BaYgSHXFNUB4v2  and Lanark County formally proclaiming Sept 9 as FASD Awareness Day in Lanark County.  https://lanarkcounty.civicweb.net/document/84408/County%20Council%20-%2029%20Aug%202018.docx?handle=BB605BB7978147508102F24013D9F79C

Finally, a comment about our current provincial government.  If you haven't been to the MCSS website lately, you should check it out.  http://www.children.gov.on.ca/htdocs/English/specialneeds/fasd/index.aspx  When you read it, you may notice subtle changes but I would like to point out what I find intriguing.

1) They are now quoting Dr. Popova's study and have changed the prevalence number.

2) It appears they made these changes on June 29.  Again, I find it intriguing these changes were made on the day Minister MacLeod took on that portfolio. 

3) They did not change the number of funding of support workers.  It is still over 50. .

4) #5 now says "Establish a consultation group to provide advice and feedback to inform implementation planning and prioritization of efforts."  We had been asking if the advisory committee had been formed and it appears they are still working on it.  

5) They added a seventh initiative which was not part of the original six.  By saying "Support public awareness initiatives targeting at-risk groups, including women of child-bearing age," this is encouraging to me to continue bringing awareness and education to the province.

I have had direct conversation with MPP Hillier and he is currently working behind the scenes on our behalf.  I have known Randy for years and know him to be an honourable man.  Our MPP’s are incredibly busy right now but I believe this will happen.  Don't give up.  I was reminded yesterday by several people that it is amazing how much we have accomplished in two years.  I believe we will accomplish just as much in the next two years.

FASD news and Awareness initiatives

Thank you to all who have been passing information along.  This blog is a bit of a collection of tidbits and news from the past couple weeks.

The Rural FASD Support Network made the decision to continue a virtual presence to celebrate FASD Awareness Day this Sunday.  Lake 88 elected to make their Friday In Focus show about FASD and had us come in and share some information.  To hear the interview, please go to http://lake88.ca/2018/09/07/in-focus-fri-sept-7-2018-fasd-awareness-day/  They also posted the interview on their Facebook page.  Be sure and listen for Sky talking about what she would like for people to know about her.   Please feel free to share and like.  The United County of Leeds-Grenville also officially declared Sept 9 as FASD Awareness Day and posted through the municipality news feed so every municipality in Ontario received this announcement.  I didn't expect them to post the blog site on the announcement so welcome any new readers.  https://www.leedsgrenville.com/Modules/News/index.aspx?newsId=a15ddc80-e1bc-4f3b-b777-4c492c835c17

The Network is getting excited about Sept 15 when we do our official launch for the physical group.  We have confirmed Minister Steve Clark of Housing and Municipal Affairs will be attending and saying a few words and sticking around afterwards to talk with folks.  We have confirmation of attendance for members of the Public Health Unit, Mental Health Unit, Open Doors, OPP detachment, and our Key Workers will be in attendance taking referrals.  It sounds like we may have around 20 families and children in attendance and Julie Mercier is providing child care who is used to working with children with FASD.  Thank you to all who have contributed to costs.  As stated before, we intend to livestream and record our monthly speakers through our Facebook page with Tanya Eichler, psychotherapist for next week.  https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks

Health Nexus is getting close to rolling out both of their initiatives involving the website and support group funding.  To get notification of when the website goes live, go to https://bit.ly/2PA0oDw .  We are also expecting an announcement from them soon saying the application for support group funding is now live with applications.

The Government of Ontario is currently taking consultation from the public.  The items I am listing is Passport and SSAH Funding eligibility through MCSS, provincial-wide strategy for FASD in Education, and increased diagnostic capacity in Health.  https://www.ontario.ca/page/consultation-review-ontario-government-spending?_ga=2.100304861.234184700.1535739480-77602624.1524938653

The Ontario Human Rights Commission also just released their latest report on the status of special education in our school systems today.  http://ohrc.on.ca/en/policy-accessible-education-students-disabilities  With the completion of the first week of school, I am extremely cognizant of the hot topics of discussion and the amount of misinformation floating around.  I will do a blog probably in a couple weeks on how to advocate in the school system but I'm hoping to record my presentations on Sept 20 at the Ottawa Adopt4Life support group meeting and then at the Ottawa FASD Symposium on Nov 3 with Jonathan and Janet.  http://fasdconnection.ca/event/2018-fasd-eastern-ontario-symposium/  It absolutely pains me to see how so many of you are struggling with your schools when I know it can be so much better.  When I read through the OHRC report, the nine ongoing barriers really stood out for me which I fully agree with.  

1) ineffective communication to parents and students about their right to accommodation, and their right to be free from discrimination and harassment in education

2) inadequate training for education providers on disability-related issues, and the duty to accommodate students with disabilities

3) insufficient resources and supports in the classroom

4) long waiting lists for assessments

5) negative attitudes and stereotypes

6) physical inaccessibility

7) inappropriate requests for medical information

8) ineffective dispute resolution processes

9) outright denial of disability-related accommodations

The reason they stood out, though, is the only barriers a teacher or principal have any control over is #1, 2, 5 and 9.  And they can all be changed through communication, collaboration and clarity.  I understand why we are seeing more and more advocates joining forces with parents because it is difficult to navigate but I would still encourage you to always assume your school wants to help, they are either limited by  #3, 4, 6, 7, or 8 or aren’t sure what the solution should be.

Conversation about the new provincial FASD Website

I recently had the pleasure speaking at length with Jo-Anne Robertson of Health Nexus, project manager of the new provincial FASD website, anticipated to go live in late fall of this year.  For someone who freely admits she knew almost nothing about FASD when she took on this project, she has remarkedly connected with an outstanding circle of advisors.  Within the conversation, it became obvious she is connected with the top three FASD research organizations in Canada which is significant because just about every new piece of Canadian FASD research coming out now is coming from one of these three organizations.  She is connected with four extremely experienced, leading medical practitioners from within this province and consults regularly with one of them.  She speaks constantly to two of the most experienced, knowledgeable service providers in the province who represent the city and the rural/north interests.  Finally, she has several of the loudest caregiver and youth advocates in the province meeting regularly to give her feedback on the quality of the website.  She shared with me her biggest fear is that she would get feedback that the quality of the website was lacking.  It was clear this project is more than a job for her.  She really sees this as her mission and her way to contributing to this cause.  She did pass along two requests.  One, they have just completed a review of all the available material to ensure all the material uses research-based information and the feedback they have received from the youth is it is very text-based.  She said it is very difficult to find research-based video material that gives advice and direction to youth living with FASD in an engaging manner.  If you know of sources or potentially even create it, please pass that information along to this blog.  The second request is this blog earlier passed out a notice that if you wanted to be notified when the website goes live, to click on a link contained within a flyer.  The link was wrong, so the flyer has been attached again with the correct link.

The Rural FASD Support Network recently soft-launched its fundraising campaign.  While the Network is anticipating funding from Health Nexus later this year to support its Caregiver Support Group, it is fundraising for other reasons.  As can be seen from its Facebook page, its caregiver membership has grown from four to 23 in six weeks.  Most of its membership are joining a group for the first time and are in various states of success.  The Rural FASD Support Network is aware of great conversations with Education Minister Thompson and Housing and Municipal Affairs Minister Clark and has been told they are getting an audience with the Premier.  Accommodation and Travel Costs associated with this advocacy is paid out of pocket by its membership.  There is also a desire to provide child care for its 19 new members at the monthly support group meeting and provide a live interactive video feed to its members who can't physically attend.  With our launch in three weeks, we wanted to give the option to contribute financially to those who wanted to help in that fashion.  As a result, we have launched a Go Fund Me page with 100% of the donations going to those three purposes.  https://www.gofundme.com/rural-fasd-support-network?sharetype=teams&member=649854&rcid=r01-15351970023-3b0636e28f9e4e74&pc=ot_co_campmgmt_w

And a big thank you to all who have already donated.

We are anticipating attendance at our Sept 15 launch to be around 50 people including service providers from the local Health unit, the Mental Health unit, local schools, local police, local FASD Key Workers, the church hosting us, local municipal officials, and Minister Steve Clark.  Hopefully, the live stream will work and you are certainly welcomed to watch on Sept 15 from 10:30 to 11:30am on https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks

Tanya Eichler is presenting on "How to recognize when someone is living with FASD."  and Wendy Reed and Malcolm McIntosh will share their stories for the first time ever about their teenage son and adult daughter. 

Finally, lots happening the next couple weeks again.  We are meeting with MPP Hillier on Tuesday and the initial Parent Support Group meeting with Health Nexus, Situation Table Coordinator Stephanie Gray on Friday about funding possibilities, Judy Kay from Thunder Bay to find out what they are doing, an article in the Hometown News coming out, Lake 88 doing a feature on the launch the following week, and of course the walk on Parliament Hill Sept 9.  If interested, I'm coming out of hiding and speaking at the local Ottawa Adopt4Life chapter Sept 20.  I recently came across the Alberta prevalence report done by Dr. Ospina where she found potentially 52% of all children currently in Alberta foster care are living with FASD.  http://fasd.alberta.ca/documents/Systematic_Prevalence_Report_FASD.pdf  Adopt4Life and we have discovered with so many of our children being adopted, a strong relationship between us is vital.  The province recently increased their funding so if you don't have a local support group for your adopted child, please feel free to reach out to them as well.  http://www.adopt4life.com/become-a-member/

FASD Ontario Website Update #2 CORRECTION In the latest website update #2, the link to sign up to be notified when the website goes live was wrong and it sent you to a blank page. My apologies for any confusion this may have caused. Please use this link to be notified when the final website goes live in late 2018.

FASD and Correctional Services

As mentioned last week, the Rural FASD Support Network has been having lots of conversations in the past month about individuals living with FASD and correctional services.

I recently shared a story with a few people now about three individuals in the Leeds-Grenville area living with FASD.  The first individual came into contact with the police, Child Protection Services were called in, the judge decided to put the individual into the system, the Mom's MS has gotten much worse, Dad is extremely angry and they have no idea where their child is now.  The second individual came into contact with the police, put on trial and found guilty, but due to Mom's and her MPP's advocacy, the judge placed in him a mental hospital for assessment and support.  He is home now and doing well.  The third individual came into contact with the police, was immediately sent to a hospital for assessment which didn't happen, family was encouraged to get mental health support by the police and eventually got help and a diagnosis.  She is home and doing well.

The police, however, tracked all this and made the decision to enter into a partnership with the local mental health clinic.  They just completed a pilot project in two locations where a mental health nurse does an immediate intake on site with the individual and establishes mental health support the next day.  It proved to be very successful and they have now permanently hired this nurse.

I know this because of a conversation with the Executive Director of Lanark Mental Health.  Through our conversation, she asked some great questions about FASD and has committed now to providing training for all her staff on how to support individuals living with FASD and identifying when someone may be living with an undiagnosed FASD disability.  She has also joined our local FASD organization now, making staff members available for our group meetings, and speaking regularly with our FASD Key Worker.  Finally, she introduced me to the Executive Director for Children Mental Health and he has done the same thing and also asked us to sit on their advisory committee.

However, the big question they asked was if we have a suspicion, who do we send them to?
I didn't know so I have completed an update capacity scan across the province on adult diagnosis.  It appears to me there are only four facilities in the province who will diagnose adults using the multidisciplinary approach as established in the 2015 Diagnostic Guidelines.  Surrey Place in Toronto led by Valerie Temple who are limited by MCSS to only accepting adults from the GTA but will diagnose adults outside the GTA for $2500, Dr. Louise Scott from Paris, ON may on occasion, CHEO led by Dr. Melissa Carter in Ottawa but the adult has to come with an adult neuropsychological assessment as they do not currently have the particular discipline, and I believe NorWest Community Health Services in Thunder Bay led by Maureen Parkes will also accept adults for diagnosis.  It is so bad that I discovered Sault Ste. Marie is sending their adults to CHEO in Ottawa for diagnosis.  But the scariest part to me is a couple of these individuals are nearing retirement age and with the retirement of Dr. Barry Stanley from this province, we are now bordering on a crisis situation for diagnostic capabilities.  Please share this information with your General Physicians.  It is not just at Queen's Park we need people talking.  We need the medical community talking about this, we need our municipalities talking about this, we need our mental health partners talking about this.

Finally, some odds and ends.  Health Nexus has announced they would like family photos for the provincial FASD Website and you can request a notification for its launch in the fall.

The new FASD Ontario website will be a bilingual website with a directory of online FASD information; a directory of Ontario FASD services; a listing of learning events (live and archived); a news feed; Frequently Asked Questions about FASD and a discussion board.

What's New We are continuing to develop the FASD website. In the past few months we have: Contacted FASD service providers to get their information and permission to list their services in the services directory. Created inclusion criteria for the FASD information (existing websites, PDFs and videso). The inclusion critieria explains what information will be included and why. Our list of FASD information was reviewed by FASD experts and they recommended what to include and what to not include based on the inclusion criteria. We are developing bilingual postcards about the new website for FASD Awareness Day. To order postcards, please contactm.gabert@healthnexus.caby August 31, 2018. We are also: Speaking to youth with FASD to see if we can provide information they are looking for on the website. Working with the advisory and FASD experts to decide which services to include in the FASD services directory. We Want Your Photos We are looking for photos of real families for the new FASD website! We need photos of children of all ages, youth and families who represent the diversity of Ontario. If you wish to submit photos of your children or family here are the instructions: 1.     Email Malou Gabertto get a consent form 2.     Sign and return the consent to Malou Gabert 3.     Save photos with the name on the photo consent 4.     Email photos toMalou Gabert or upload photos** **you can send Malou the images via wetransfer.com, Dropbox (https://www.dropbox.com/sh/oh767kt3yqsy4b3/AAB5qTzqDpwRiSLWFkeFK5lEa?dl=0) or another file transfer program.  Questions? Contact Jo-Anne Robertson at 800-397-9567 x2238 or j.robertson@healthnexus.ca. On our way! Over the next month, we will finalize the content of the draft website. In early fall we will field test the draft website with parents/caregivers and service providers. Based on what we learn from the field testers, we will make changes and finalize the English website. Then, we will translate it into French and test the French website in late fall. Stay tuned! If you want to be notified when the final website goes live in late 2018, you can sign up here.

 Also the Ottawa Children Inuit Centre is wanting to partner with us if you are interested.

As a community member, parent, caregiver…
WE NEED YOUR HELP!         

Come join the group discussion on:
(1) FASD programs and services for Inuit;
(2) Gaps and challenges to accessing FASD programs and services, and;
(3) Recommendations on how to best support families, children and youth with FASD.

COME SHARE YOUR THOUGHTS!!

When?
Wednesday, August 15th 2018
Dinner @ 5:30pm / Discussion @ 6-7:30pm

Where?
230 McArthur Avenue - 3rd Floor

Available
Child Care (Please RSVP), Bus Tickets / Taxi Vouchers, Door Prizes!!

Please RSVP by Monday, August 13th 2018
by contacting Amélie (text, call or e-mail).

Contact Information:
Amélie Cardinal, FASD Project Coordinator
FASD2@ottawainuitchildrens.com

(613) 296-4209

Finally, a quick shout out to our Russian readers.  It is great to have you join us!

Lanark, Leeds-Grenville FASD News

With its registration with Health Nexus, the new provincial FASD organization, the Rural FASD Support Network formally organized on July 24 as a local FASD support organization.  Tracy Moisin and Diane Greer were elected co-chairs, Shelley More and Diane Greer were elected co-treasurers, and Rob More was elected secretary/communications.  Tanya Eichler was appointed the Caregiver Support Group Committee Chair and ad-hoc member, Stacey Crosbie was appointed Fundraiser Committee Chair and ad-hoc member and our four area FASD Key Workers, Mallory Dopson from Lanark, Megan Delin from Leeds-Grenville, our SDG Worker and Prescott-Russell Worker were extended permanent invitations to all Executive meetings and appointed Community Liaisons.  Gillian Jackson, the Key Worker coordinator from Kids Inclusive was also in attendance.  A member of the executive will also serve as the Network Liaison with the LLG FASD WorkGroup which is the FASD Service Provider organization.  While they are our partners, they are completely separate from the Network.

We have separated the Network into two entities, Support Group and Advocacy Group.  One, we provide a caregiver support group which will be launching on Sept 15 at Calvary Bible Church in Smiths Falls at 10:30am and every third Saturday morning of the month following that.  Its focus is on supporting, connecting and educating caregivers.  Two, the executive committee focuses on advocacy.  Our focus for this year is on building FASD capacity and growing public awareness within the Lanark, Leeds-Grenville, SDG and Prescott-Russell area.  Finally, with our Key Workers, we are connecting with our local service providers and building direction and capacity.
We are inviting everyone to the initial launch on Sept. 15 because we have Tanya Eichler, Psychotherapist, presenting on "How to recognize if someone is living with FASD."  We also have two new members presenting their stories and their challenges and successes as caregivers.  One is speaking from the perspective of a child caregiver and the other is speaking from the perspective of an adult caregiver.  We are anticipating several local service providers in attendance from the Education, Justice, Mental Health, and Developmental Services sectors with media coverage.  We will also be live-streaming the launch from our Facebook page.   https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks  If you are in the area or want to watch, please feel free to do so.  We do have several new members that have joined in the last couple months and it would mean a lot to have them walk into a large supportive group on Sept. 15.

While we are not doing something specific for Sept. 9, Kingston and Ottawa are.  https://www.facebook.com/events/307314979835069/  Ottawa and https://drive.google.com/open?id=0B4G_PCr5fBe9ZGQyWjRubS00LXl5dnMzd0JNTVJFd0RxNkZz  Kingston

As mentioned before, the County of Leeds-Grenville has also proclaimed Sept 9 as official FASD Awareness Day.
https://drive.google.com/open?id=0B1sCiqNTFMNyQjRqbXk5dEtJZW4xUmhLWlRhWi0zVFRQRlJv

With this proclamation, the Brockville Times and Recorder which is also part of PostMedia decided to do a feature story on us as well.  https://www.recorder.ca/news/local-news/rural-families-battle-fetal-alcohol-disorder  As with any media coverage, we would encourage you to comment on the story.  We always want to make it obvious to our media partners that their readers are interested in these type of stories.

Finally, Health Nexus is now accepting resumes from both caregivers and service providers to sit on their advisory committee that determines what FASD organizations will receive funding and for what purposes.  I would encourage you to contact Angela if you are interested.
https://drive.google.com/file/d/1urodU4ktLbrpqZKG394ZfIL1lx0cdUc5/view?usp=sharing

At some point, I will be writing about the importance of advocating the Ministry of Correctional Services as well.  The Network is having lots of local conversations right now around this service and getting a very good perspective.

We are continuing to monitor Ministry staffing and this summer session and now anticipating at least another month before sitting down with Ministers and the Premier.

Local FASD Developments

One thing I have learned over the years is everything grows from your foundation.  Priority number one for me is always God, Shelley and me followed very closely by my kids.  Next, if the family is good and strong, then look outward.  Our friends and colleagues come next.  Depending on life and energy levels, we might start working on our community and finally our province.  I say constantly we are blessed tens times over which is why we can serve as a voice for those in our community and province who can't move past providing for their family.  However, this is why we need others, not living or caring for those with FASD, speaking for us.

This past week, in Lanark, Leeds-Grenville, I saw three examples of others speaking for us.  The Leeds-Grenville County Council passed a resolution stating Sept. 9 as official FASD Awareness Day in Leeds-Grenville with unanimous assent.  We also received wonderful advice and additional invitations to present our information throughout the County.  To meet so many individuals in one place who get this and want to help was a real highlight this week.

The second example is the Catholic District School Board of Eastern Ontario has successfully established a multi-disciplinary assessment team.  They have just hired their own occupational therapist, well-versed in sensory needs and FASD to join with an existing educational psychologist, a behavioural psychologist,  and speech-language pathologists.  Previously, they had to use the local LHIN OT's who were not readily available.  This OT's mandate is to build capacity, help with assessment and programming for students with FASD, trauma and complex special needs.  While our school board won't be able to diagnosis, they will be able to support in every possible way.

Finally, I read in our local paper on page 10 an article summarizing our local policing efforts.  They made a brief mention about the fact our local OPP detachment has hired a mental health nurse to join their staff.  This hiring marks the evolution of mental health awareness in this area.  Years ago, our OPP detachment would incarcerate individuals with mental health challenges.  They changed their policy to taking them to the emergency ward but was finding the hospitals weren't equipped to deal with these individuals.  As a result, the local detachment and the local Mental Health organization entered into a partnership.  They just completed a pilot project where they do an immediate intake with a mental health nurse.  They are so pleased with the results, the local detachment has now hired their own person.  This action reflects a belief that we need to be working with individuals who make poor decisions.  We provide guidance and support, not punishment.  This is the belief that we want everyone to have regarding individuals living with FASD.  This action is also going to lead to more individuals living with undiagnosed FASD getting the proper support.

Within your networking, do not forget your local police.  They tend to be our first responders when things get off the rails and our partners in crisis situations.  When you add in our County Council and our School Board, once again, I am utterly amazed at the level of support I keep finding in my local community.  It is great to know as we continue to build capacity and awareness, we do have wonderful partners behind us providing the support.

Open Letter to Premier Ford's Chief of Staff

The following letter was sent to Premier Ford's Chief of Staff Dean French.  Simone Daniels, Andrew Kimber, Brock Vandrick of Premier Ford's staff were copied as were Minister Clark and MPP Hillier's offices.  Please feel free to send your own version of the letter to the emails listed at the bottom.

Dear Mr. French,

I am writing to you on behalf of the Rural FASD Support Network.  We represent the caregivers in the rural Eastern Ontario region who are currently supporting children and adults living with Fetal Alcohol Spectrum Disorder.  We also work closely with the other 23 FASD caregiver support groups across this province.

There is currently over 90,000 children and 300,000 adults in Ontario living with this permanent brain-based disability according to a recent study done by Dr. Popova.  https://canfasd.ca/wp-content/uploads/sites/35/2018/05/2018-Popova-WHO-FASD-Prevalance-Report.pdf  FASD is currently twice as prevalent as Autism and three times as prevalent as Developmentally Disabled.  However, because there are currently only two facilities in Ontario equipped to diagnose this complex disability for adults, over 90% of individuals living with this disability are undiagnosed.  This disability requires a multidisciplinary approach including a neuropsychologist, an occupational therapist, a speech-language pathologist, and a medical practitioner trained in FASD characteristics.  And because diagnosing FASD is not currently covered under OHIP, it is very difficult to track current prevalence.

The previous government did pass two pieces of legislature last year.  The first piece was in response to a comprehensive roundtable report done in 2015 by Granville Anderson and so six initiatives were established.  These initiatives include a FASD Key Worker in each region of the province, funding for starting support groups, a comprehensive provincial website, Indigenous support, establishing an Advisory Council and research funding.  These initiatives were a wonderful start for us and we certainly hope you will continue to support them.  However, the Leeds-Grenville area and the Lanark area only have a part-time Key Worker unlike most of the other regions of the province.  Prescott-Russell area got a full-time worker despite only having half the population and need as our area.

The second piece of legislature was identifying September 9 as FASD Awareness Day.  This motion passed with unanimous assent because MPP Kiwala of the Liberal Party crossed the floor and partnered with key MPP's from the PC and NDP parties.  Minister Clark and MPP Hillier have been wonderful champions for us this past year.

We have identified four key initiatives that we would like to discuss with you further.  We would point out all these initiatives do not require additional assets.  We believe, like you, a strong economy solves lots of problems.  We know when unemployment is high, stress and anxiety will be high.  This is turn creates environments that individuals living with FASD are going to find difficult.  However, we have identified these initiatives as being efficiencies on current programming.

      1)     The Education Act be amended to require school boards to develop a FASD strategy in consultation with local Key Workers and Support Groups.  In our experience, school boards do currently have the proper staff to support students living with FASD but lack the knowledge or experience.  A deliberate approach rather the current haphazard approach is needed across this province. 

2   2 )     The current Special Needs Strategy needs to include a section related to FASD and the establishment of multidisciplinary clinics. 

     3)     All current programming such as Passport Funding, Special Services at Home, Community Programs, Respite services, Developmental Services which accept Autism or Developmental Disabled as meeting their criteria need to include FASD as also meeting criteria.

     4)     Ontario joined the National FASD Network last year and needs to begin consultation with BC and Alberta in particular.  These two provinces have had a comprehensive FASD strategy for over a decade now and have a wonderful model we can copy.

As stated, none of these initiatives require additional assets.  Rather, we believe collaboration and education with our current resources are the key going forward.  When lived experience works in collaboration with service and research expertise, everyone benefits.  We have seen for years now when individuals living with FASD are not supported as is the current case, unemployment costs, medical costs, housing costs, justice costs, and mental health costs will rise.  However, with the above supports, we will see these costs decrease.  Based on an audit we completed last year focused on only Autism supports, Developmental Disability supports and FASD supports, we projected from the current funding model, each child living with Autism is entitled to about $40,000 a year, each child living with a Developmental Disability is entitled to about $60,000 a year, and each child living with FASD is entitled to $12 a year.  We were directly told by the former government last year that their Special Needs funding goes to these two groups and there is none left for other groups.  As Minister MacLeod can tell you, our Acquired Brain Injury partners can share a similar story as us.  We do thank you for combining the children and youth services with the adult services under one portfolio with Minister MacLeod.  That move alone hopefully solves a major issue by eliminating the start-over we go through as our children transition into adulthood.

We thank you for your attention and look forward to the opportunity to discuss how we can support these individuals going forward.

Rob More

Rural FASD Support Network

Dean.French@ontario.ca
Simone.Daniels@ontario.ca
Andrew.Kimber@ontario.ca
Brock.Vandrick@ontario.ca