CanFASD series on FASD FAQ's Part 4

In the fourth video of the CanFASD series for Foundations in FASD, Dr. Hanlon-Dearman answers the question, “What would be an ideal multidisciplinary team and who should be involved?”,  Dr. Hanlon-Dearman replies the team should include a pediatrician, possibly a geneticist, speech-language and occupational therapist, a social worker, a coordinator, and an FASD educator located within the person’s community.  In Manitoba, they have established one team to serve the entire province of Manitoba located at the Winnipeg Children’s Hospital.  Within the hospital, they have five developmental pediatricians trained in diagnosing FASD, two geneticists who also can diagnose, two psychologists, one occupational therapist, one speech-language pathologist and one social worker of whom can provide all the necessary assessments, an educator who does the follow-up, a researcher and four admin.  However, the key is they also have manager with ten coordinators located throughout the province in the local communities to do the initial referrals. 

Within Ontario, there is no clinic or hospital organized in this manner.  While all these services do exist, they are all isolated from each other.  This is why the Ontario Roundtable Report on FASD identified the establishment of multidisciplinary clinics as being a priority.

To understand the current system, the following true story is based on two of our original members within the Rural FASD Support Network.

The story begins with a CAS Social Worker who placed two sisters ages 6 and 4 in an adoptive home and provided a ten-page social history for each.  There was no information about milestones or development but references made to alcohol usage, neglect and possible abuse.  However, nothing was ever proven in court so could not be stated definitively.  At age 6 and 8, the girls were struggling with reading so a speech language assessment was done by the school and services were provided.  At the same time, an IEP was developed and intensive academic support was given at the school.  Minimal gains were being made so the parents hired a psychologist to do an academic assessment to try and figure out what was happening at a cost of $2000 each.  With this information, slow and steady gains were made and the girls passed their courses.  In high school, things took a turn for the worst for the older sister.  Extreme mental health crisis was seen, police were involved, trips to the emergency ward started to happen, both parents had mental health breakdowns and no solutions were being found.  A referral was made to Children’s Hospital of Eastern Ontario through girl’s pediatrician where a geneticist took the CAS social history, the school’s speech-language report, the private psychological report, the emergency room reports from the parents, did her own assessment and gave a diagnosis of FASD.  The diagnosis went back to the pediatrician and the parents became their own social workers.   After the older sister turned eighteen, the pediatrician discharged her, and she started seeing a general practitioner who through their clinic assigned a social worker to her.  At the same time, an FASD worker through MCCSS was assigned to her who supplements the parents as a coordinator.  Today, the parents and the Rural FASD Support Network now have the role of FASD educator with the Canadian FASD Research Network or CanFASD as the researching organization.  The nine roles listed by Dr. Hanlon-Dearman were provided by nine different organizations in this family’s case.  Based on the sharing of stories with the Rural FASD Support Group, this is regrettably a very standard story in Ontario.

As part of our mandate, we are thrilled to be sponsored by MPP Steve Clark and supported by MPP Monique Taylor to bring FASD education and awareness to Queen’s Park again on Feb 24 from 10-1pm with remarks and a presentation by youth with FASD at Noon in Room 230.  We are anticipating ten different support groups from Sudbury, Owen Sound, the GTA, Halton, Ottawa, Belleville, Pembroke, Waterloo, Kingston, and Guelph joining us to share how they are bringing FASD education to their local communities.  We would ask to please confirm your attendance with ruralfasd@gmail.com so we can ensure the caterer has enough food for everyone.  If you would like to request a private meeting after 1pm on Feb 24, please speak to Rob at ruralfasd@gmail.com.  Finally, we would like to thank MPP’s Bisson, Gelinas, Hassan, Kanapathi, Kernaghan, Kusendova, Pettapiece, Sabawy, and Sattler for confirming their attendance with regrets from MPP Mitas.