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National / Health Canada Needs To Be Held Accountable for Neglect and Causation of Exposure to Compounded Trauma In Their CRITICAL FAILURE To Complete Epidemiologic Studies of FASD

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As A Society We Have To Do Better National / Health Canada CRITICAL FAILURE To Complete Epidemiologic Studies of FASD

A recent comprehensive literature review revealed that there have been no rigorous population-based epidemiologic studies of FAS or FASD in Canada that used extensive outreach or other methods of active case ascertainment (Popova, Lange, Probst & Rehm, 2017). The few studies that do exist had numerous acknowledged limitations, such as using small samples, being conducted in small communities and

excluding individuals who did not meet criteria for a diagnosis of full FAS. The prevalence estimates provided by these studies are not only out of date, but also, as a result of their limitations, are not generalizable to the Canadian population or applicable for decision-making purposes. Moreover, most of these studies used

clinic- or record-based systems without active recruitment of participants. Due to such methodological limitations, the prevalence estimates are more likely to be underreported in any population (May & Gossage, 2001). Active case ascertainment methods have been used with school-age children in several countries, including Australia (Elliott et al., 2008); Croatia (Petkovi & Bariši, 2010, 2013); Italy (May et al., 2006, 2011); South Africa (May et al., 2000, 2007, 2013; Olivier et al., 2013; Urban et al., 2008, 2015; Viljoen et al., 2005); and the United States (Burd et al., 1999; Clarren et al., 2001; May et al., 2014, 2015).

Given that FASD has been recognized as the leading known preventable birth defect and cause of developmental delay among Canadians, it is crucial to estimate the prevalence of this disorder. The estimates of the prevalence of FASD are vital for early detection, diagnosis and intervention, as well as for informing policy-makers and politicians of the impact of FASD. In addition, prevalence estimates will help

to set priorities for public health policy, public health initiatives funding and health care planning. Updated prevalence estimates are essential to effectively prioritize, plan and deliver health care to high-needs populations such as children, youth and adults with FASD. These estimates are also vital for assessing the population burden of disease and allocating resources for health care and prevention.

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Although it has been documented that keeping a stable and routine household was important for persons with FASD, the far majority of caregivers find routines very difficult to actually achieve.

Once a person with FASD is triggered, it may be

impossible to carry on with the daily routine.

Ongoing challenges for many caregivers also arise in finding a medication that works, promoting good hygiene, and not feeling prepared by healthcare and community or network support services.

Ongoing lack of information about FASD created misunderstanding and stigma in families and communities. Lacking adequate in-community professional and peer level support has left FASD caregivers challenged, frustrated, and isolated. A situation made worse by the shortage of professional understanding about FASD.

Despite the prevalence of FASD, training and support for caregivers is often limited.

Caregivers often feel isolated, overwhelmed, and unsure of how to best support individuals with FASD.

This lack of training and resources can result in a higher risk of negative consequences, such as high-risk behavior, legal entanglements, and caregiver burnout.