Case study – advances in community-based FASD diagnosis

One community based FASD multi-disciplinary diagnostic team, the Eastern Door, was established in New Brunswick through the First Nation and Inuit Health’s call for proposals in the early 2000’s.  The Eastern Door Team, is an Indigenous community based diagnostic team, that’s been operating since 2005-6; it was used as a model for the New Brunswick FASD Centre of Excellence that opened in 2012.

The Eastern Door is actually the result of successful tri-partite collaboration between the federal government, the provincial government and the Elsipogtog First Nation. It would not have been possible without the funding provided by FNIH’s FASD Program for training and team coordination, but the in-kind provincial services of a physician and OT and the special needs accommodation services offered post-diagnosis by the on-reserve school were also essential. The Eastern Door is unique in the development of culturally based tools for screening, diagnosis and intervention and the participation of traditional healers in the diagnostic process. After the Eastern Door was operating for a few years a satisfaction survey was sent to the families who had accessed services; the satisfaction rate was over 90%. One of the birth mothers who was able to access FASD services in the community speaks of her experience with diagnosis and then after as accommodations were put in place and he child began to learn:

When she was a baby I didn’t understand why she would you know when she would get angry she would bang her head on the floor… constantly…..she didn’t know how to say how she was feeling…so just for…for not to get hurt  I would put my hand on her head, where she was pounding her head, and so she wouldn’t get hurt……

At first I dreaded going and didn’t know….didn’t want to know….but I put all those feelings aside and I said this is for her…… She asked me a lot of questions and I just answered them in my honest way as best as I could…what I know…but she helped me figure out a lot of stuff in my head…about it…just talking to her it was a relief….for me…that it had a name….the doctor told me that this is what it is and then what they were going to do and every word he was saying after that…it was lifting my spirits and then things started going more easier after that and both of us…and she started to learn and when she first started reading a book I cried…I never thought she would read a book……and I was so happy…when she graduated high school----all that, because of that, the diagnosis, it made my life easier---

Despite its success, the Eastern Door funding from FNIH has been reduced to a point that it now does not even cover the salary of the team coordinator. The original plan was to begin to offer adult diagnosis and to expand in order to allow nearby FN communities to access diagnostic services as they have requested. Instead, one of the health center administrators recently had to restrict Eastern Door services because of inadequate funding from FNIH. FNIH removed diagnosis as one of the funded components in their FASD program since they consider medical diagnostic services to be the responsibility of the province. The ED now has no health funding and is operating through the education division in the community offering diagnosis to school age children and youth.