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.