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.