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.
Rural FASD Support Network