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.  https://ca.linkedin.com/in/barry-stanley-2-fasd-59479bb2  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. http://www.fasdontario.ca/cms/service-areas/diagnostic/diagnostic-services/

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 skiwala.mpp.co@liberal.ola.org 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.

Strongest Families creating FASD resource

As caregivers working with individuals impacted by FASD, one of the hardest things is to consistently create a calm and safe environment for those individuals.  And when things get off the rails, it is so easy to get caught up in the drama and emotion of the situation.  Yet, we can't.   We have to remain the touchstone to which our child can return.  So, how do we accomplish that?  Strongest Families have asked the same question and is creating a viable solution.

Our strongest weapons are education and training.  Just like any situation that is new to us, once we gain experience and solutions, we develop confidence and calmness that enable us to become much more proficient at dealing with that situation.  The first time our son hit another boy, we didn't know what to do.  However, with talking with others, researching solutions, and using other tools,  we are able to deal better with this lessening issue, and are getting insight into the triggers behind it.

Strongest Families is using the same approach.  They have focused on neurodevelopment disabilities and have developed a very good behaviour modification program for those children impacted by FASD.  After going through their program, the first thing that struck me was they are using all the well-researched, well-tested standard behaviour modification concepts within their program.  As an experienced special needs teacher, I have been using these concepts for years and can attest to how effective they are when used properly.  Positive reinforcement, repeating instructions, consistent application of those expectations, having fun together, remaining calm and collected, predetermine strategies for upcoming events and plan your responses are all great strategies particularly for those who struggle with understanding consequences and managing anxiety.  Strongest Families uses these modification concepts and others to create an eleven step process.  They focus on the concepts that will have the most immediate impact first and then repeat them as you go through the other concepts.  The best part, though, is the coach.  While the program is offered online and can be done independently, they also offer a trained coach for some people to walk you through the program.  If you are currently in a struggling situation with someone impacted by FASD or any other neuron-development disability, it can be very difficult to learn a new program by yourself, and Strongest Families recognizes that as well.

This program is currently in the testing stage, and they are just wrapping up the first study.  They invited caregivers impacted by FASD to participate first and have just completed their research on the effectiveness of the program.  The initial anecdotal response they are receiving from the participants has been extremely positive and hopefully serves as an indicator for what the statistical analysis is going to show.  When you consider that they are using established methods in this program, it is easy to envision that it is going to be a wonderful resource once it becomes available hopefully next year. 

            Knowing the current participants are giving it such positive feedback is not surprising.  As stated earlier, when a caregiver has solutions and a plan, it changes our outlook.  We are no longer stressed, frustrated, and concerned.  Faith and hope are powerful tools in our arsenal.  As any psychologist will tell you, to succeed, we must first believe.  This program will work and with that coach beside you, it is only a matter of time before you see the positive impact.

            The best news, though, is Strongest Families is now creating a similar program for individuals impacted by a neurodevelopment disability.  They have just concluded the initial research with an advisory committee and will be recruiting caregivers to give them feedback on this new program.    For more information on how to get involved, please contact Karen Turner at Karen.Turner@iwk.nshealth.ca and ask to be signed up for the Strongest Families monthly newsletter.  You will not be disappointed.