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

DTC Update

In the past couple weeks, the Senate released its report on the status of the Disability Tax Credit and Registered Disability Savings Plan and its recommendations on how to make it better.  https://sencanada.ca/content/sen/committee/421/SOCI/Reports/2018-06-18_SS5_RDSP-DTC_FINAL_WEB_e.pdf  This report was received by the Minister of National Revenue Diane Lebouthillier.  I personally received a letter this week stating the Minister had reviewed my daughter's file and reversed the decision made by the Canada Revenue Agency.

The following is the reply I sent to her and the members of the Senate who created the report.

July 10, 2018
Dear Minister Lebouthillier,
I would like to thank you for taking the time to review my daughter Skylar More's appeal for the reconsideration of the decision made regarding her Disability Tax Credit.  As you read, her diagnosis of Fetal Alcohol Spectrum Disorder markedly restricts her ability to set goals, make judgments, problem-solve, use adaptive functioning and working memory 100% of the time.  We fully recognize that she will live an interdependent life with us and others for the rest of her life.  To know that we now have the means to provide for her after we pass away alleviates a great concern for us and we thank you for that.
We did read with great interest the Senate report that was released a couple weeks ago regarding the CRA's handling of DTC applications.  We also appreciated the time and effort the committee took to understand where the issues are and believe the recommendations they made would certainly have a positive impact on this process going forward. 
Your announcement of the establishment of an Advisory Committee going forward is what caught my attention and in part why I am writing to you today.  Health Canada recognizes FASD as a permanent neurological disability which always markedly restricts goal setting, judgment making, problem-solving, adaptive function and working memory 100% of the time and will for the entire lifetime.  It is now the second most prevalent neurological disability amongst our Canadian population behind only dementia/Alzheimer's with over 1 million individuals living with this disability and twice as common as Autism.  I would encourage you to include a FASD neuropsychologist on your advisory committee as it is a very complex disability which requires four different specialists working in collaboration.
I do appreciate you taking the time to review my daughter's application and reversing the determination.  We were not looking forward to having to go to tax court as that would have been a highly stressful situation for my daughter.  We do hope you will reached the same conclusion when you review my son Jacob's application and my daughter Cassie who needs to submit for consideration again next year since her three years will be up. 
One item we would ask going forward is regarding the frequency of reapplication regarding our children.  While we appreciate your decision to give us five years before having to reapply for my daughter, FASD is a permanent lifetime disability with no cure.  We also know that Tax Court has established case history stating the same fact and has ruled that no reapplication is necessary when the diagnosis is FASD.  Canada Health states the same fact and the Ontario Disability Support Program agrees as well.  We would ask going forward that our three children, Skylar, Cassie and Jacob More, all of whom have been diagnosed with FASD would receive a lifetime exemption to reapplication for the Disability Tax Credit.
I look forward to your reply.


Rob More
robmore629@gmail.com

cc:
art.eggleton@sen.parl.gc.ca  
Chantal.Petitclerc@sen.parl.gc.ca 
judith.seidman@sen.parl.gc.ca 
jim.munson@sen.parl.gc.ca 
WandaThomas.Bernard@sen.parl.gc.ca 
fabian.manning@sen.parl.gc.ca
marie-francoise.megie@sen.parl.gc.ca 
Ratna.Omidvar@sen.parl.gc.ca 
rosemay.poirier@sen.parl.gc.ca 
kamal.khera@parl.gc.ca
Pat.Kelly@parl.gc.ca
Pierre-Luc.Dusseault@parl.gc.ca
Xavier.Barsalou-Duval@parl.gc.ca
lisa.raitt.a1@parl.gc.ca
scott.reid.a4@parl.gc.ca
al@impact6.ca

Diane.Lebouthillier@parl.gc.ca
House of CommonsOttawa, OntarioCanadaK1A 0A6If you wish the mail your letter, you don't need postage.