Wednesday, 9 May 2018

Input Needed from the FASD World

It has been a while but there are several things where our input is needed.

1) Jo-Anne Robertson, Project Manager for the provincial FASD website is asking for teenagers and young adults living with FASD to contact her regarding what they would like to see on the website.

2) She is also asking for Francophones and Indigenous individuals to give input as well.

Jo-Anne is seeking Indigenous and Francophone individuals to either join the advisory or consult on website. Advisory members are asked to refer Indigenous/Francophone individuals who might be interested to contact Jo-Anne j.robertson@healthnexus.ca

Jo-Anne is planning to hold small focus group / interviews with teens living with FASD. If you know any teens or young adutls (<25 years who might want to give input into the website, please contact Jo-Anne j.robertson@healthnexus.ca


Please feel free to contact Jo-Anne directly if you would like to give input.

3) Margaret Van Beers is asking service providers and families from the Lanark Leeds-Grenville area to complete the following surveys.
As part of the rollout of the new FASD Worker position, we're distributing two surveys:

For Families - https://www.surveymonkey.com/r/RSK5GX5

For Service Providers - https://www.surveymonkey.com/r/RW3JY2G


As I mentioned at our last meeting we are distributing it widely and invite you to share with others as you see fit. The information gathered will be submitted to MCYS, and will also help us to plan for the new FASD position in LLG. We will leave the surveys open until June 10, 2018.

4) Citizen Advocacy announced November 2, 3 as the date for their 2nd annual FASD Symposium in Ottawa with more details to come.

5) The Rural FASD Support Network has announced Sat. June 16 at 10:30am at Calvary Bible Church in Smiths Falls as its launch date.  More details still coming on it as well.

6) I also heard from Marian Mlakar of MCYS regarding status on four of the six initiatives.
The organization that is funding and coordinating parent support groups is still being determined.
Key Workers were assigned to the 21 provincial coordinating agencies who also determine the local special needs strategy.  They are currently doing needs analysis and they will determine high needs areas in the fall.
Health Nexus and Jo-Anne Robertson is creating the FASD website for the province with input from caregivers, experts, youth, and service providers.
Finally, MCYS is going to create their advisory committee later this year consisting of youth and caregivers.

7) Yes, Bill 191 and later Bill 44 to amend the Education Act regarding FASD has died with the writ drop.  We will be starting all over again in the fall.

8) Finally, got a reminder today of the constant battle we fight.  We applied for the Special Services at Home money for all three kids through the Ministry of Community and Social Services.  Apparently, FASD does not meet their 2018 guidelines for a physical or developmental disability.  However, autism, acquired brain injury, an intellectual disability, or cerebral palsy do meet their guidelines of a disability.  How many more fights do we have to do with the province???!!!  So I guess I get to do another appeal.  Otherwise, we get to pay for any respite or developmental programming we do with the children.

We also got told we are not eligible for the Assistance for Children with Severe Disabilities because our gross family income is slightly too high.  However, we were required to apply separately for each child and they don't take into account at all we have more than one disabled child.  Our income is too high for one disabled child and their rules don't allow them to consider any other disabled children in the family.



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