Wednesday, 26 July 2017

The Current Challenge of diagnosing in Ontario

You may have seen the letter the Lanark Leeds-Grenville FASD WorkGroup received from the Honourable Sophie Kiwala, MPP which we posted in the blog a couple weeks ago.  There were two new pieces of information in the letter that Elspeth Ross pointed out which were exciting news and things I wanted to comment on.  The first item was confirmation that MPP Kiwala is the person tasked with developing our provincial strategy which most of us already knew.  However, she is also the person who is spearheading the conversations with the other Ministries and confirmed she has already started conversations with the Ministry of Health.
This is fantastic news as it is a weak link in our world of living with FASD.  In a recent conversation with Dr. Barry Stanley, he explained to me why getting a diagnosis for FASD is so problematic in the province of Ontario.  It starts with the fact that FASD is so complex you need a multi-disciplinary team to do the diagnosis.  Normally, that team will consist of a minimum general practitioner or pediatrician depending on the individual’s age, ideally a neuropsychologist, a speech-language pathologist and an occupational therapist.  If the GP or pediatrician is not familiar with the physical characteristics of FASD, they may make a referral to a specialist.  Dr. Stanley also pointed out that FASD doesn’t currently have a billing code under OHIP and that he used to have to call it psychotherapy when he did the diagnosis which was acceptable to OHIP.  He is a great advocate for this particular issue and has had numerous conversations with the Ontario Medical Association about getting this to change.  Interestingly, Granville Anderson referred to this very point in his roundtable report and one that MPP Kiwala is aware of.  Our MPP’s, Randy Hillier and Steve Clark, were also shocked to learn how difficult it is to get a diagnosis.
The second big challenge we face in getting a FASD diagnosis is the lack of facilities in Ontario.  Per FASD One and confirmed by the Centre of Addiction and Mental Health and Granville Anderson’s Roundtable report, there are currently 12 clinics in the province who can diagnose FASD using a multi-disciplinary team.
Dr. Stanley also pointed out that in his expert opinion that you want to get the team and not an individual to do the diagnosis.  Unless that individual is well-versed in FASD, they can certainly make things worse as we have certainly discovered.  However, all 12 clinics have certain restrictions.  Durham has a clinic for U-18 Durham children, Guelph has a U-18 clinic for Guelph children, London is currently on hold, Kenora accepts U-18 Kenora children, Peel Region has a U-6 clinic for Peel region children, Sudbury clinic is for U-18 Sudbury children, Thunder Bay is for U-18 Thunder Bay children, Anishnawbe in Toronto is for First Nations people, Mothercraft in Toronto is for their clients with U-6 children, St. Michael’s, Toronto is for GTA people only but do diagnose adults and children, Surrey Place, Toronto diagnose children and adults from Toronto only and Waterloo has a U-18 clinic for Waterloo people.  The two remaining clinics is Halton and Ottawa.  Halton has a private practice just established by Dr. Scott and accepts U-18 clients from anywhere in the country.  Ottawa has the Children’s Hospital of Eastern Ontario which does things very differently.  They do accept clients, both children and adults, and anywhere in the country but require a referral.  However, they provide a diagnosis using one individual from their genetics department and no further support.  They also have a wait list of about two years.  We received our diagnosis from them because we had managed to get a S-L pathologist report, an occupational therapist report and a psychologist report through the children’s school due to their academic challenges.  Our pediatrician was able to use those reports and make the referral to CHEO.  He continues to follow them and we are also using a private counselor who specializes in FASD.  We also know that the KidsInclusive out of Kingston can provide some assistance for us as well. 
However, until we found this pediatrician, it was not good.  He was the first to realize there was something bigger going on with our children than just impulsivity and attention difficulty.  However, we also learned this year that the Champlain LHIN who services our Ottawa area for occupational therapy is no longer accepting new clients due to budget cuts.  So, in Eastern Ontario, literally, the only way to get a multi-disciplinary team diagnosis for FASD is to hire private practice people.  You will also notice that an adult who lives outside of Toronto or a child outside one of the 12 catchments can not currently get a diagnosis or support for FASD from a publicly funded multi-disciplinary team.
      To hear MPP Kiwala say her current priority is to collaborate with the Ministry of Health in determining FASD diagnosing capacity and figure out what needs to be improved is a very welcomed piece of information.  If you wish to pass along your appreciation for her work, I would encourage you to contact her office at or 613-547-2385.

Follow-up - Ontario does not currently have any method of tracking the prevalence of FASD. The approximately 2,500 Ontarians with FASD referred to in the 2017 Budget is a gross underestimation.  Until Ontario establishes a consistent method of tracking FASD such as a OHIP Billing Code, we will never know just how much capacity and support is needed in this province.


  1. What is required is an accurate account of the number of individuals actually being diagnosed in Ontario. That should be the first step for MPP Kiwala. It is great that you have emphasized the issue of diagnosis here in Ontario. Keep up the good work Rob.

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