Recently, the Calgary Herald published an important series on the realities facing individuals with fetal alcohol spectrum disorder. This series, researched and written by Vanessa Hrvatin, shone a light on a developmental disability that affects over a million Canadians, and yet is often overlooked, misdiagnosed and misunderstood.
We write as a collective of service organizations in Calgary and the surrounding areas that work with individuals with suspected or diagnosed FASD and their families and caregivers. Our shared goal is to improve outcomes and community conditions for individuals and families affected by FASD. We appreciate the sensitivity and care with which Hrvatin approached her reporting.
We applaud the Calgary Herald for raising awareness about FASD in Canada. It is estimated that people affected by FASD represent four per cent of the Canadian population. As the reporting in the Herald correctly identified, with the right supports and early intervention, people with FASD can have positive outcomes.
Despite the promise of early intervention and correct supports, it remains the case that FASD is poorly understood by many in our community. Too often, it is the symptoms of the disability that are addressed, rather than the root cause. The failure to understand and properly diagnose can lead to challenging outcomes including involvement in criminal justice, mental health issues and addiction.
Alberta has led the way in developing an evidence-based service delivery model for individuals with FASD. This leadership was initiated under the Klein government, which had a strategic vision around FASD. It led to the development of a network model, which is considered a best practice globally. In this regard, Alberta is recognized as a leader. The network model has led to the existence of a robust community-based infrastructure and leadership around FASD.
With the recent change in government in Alberta, we are looking forward to continuing this legacy, working in collaboration with the United Conservative Party and the newly appointed minister of community and social services, Rajan Sawhney.
Specifically, we support the UCP platform’s commitment to “develop an approach to personalized and individualized disability-related supports by restoring the Persons with Developmental Disabilities program to its pre-2009 eligibility criteria.” In practice, this means more people with FASD will be able to access critical supports offered through PDD by removing the current IQ requirement.
The current eligibility criteria for PDD, requiring an IQ score of 70 or below as the sole indicator of significant intellectual limitation, creates a barrier for accessing services. For individuals with complex disabilities, such as FASD, it is well established that overall functioning is not well represented by an IQ. Individuals with FASD frequently have deficits in executive and adaptive functioning, which can often be significantly impaired despite having an IQ over the 70 threshold. The UCP’s indication that they will remove the IQ requirement for PDD is a positive step forward.
Additionally, we look forward to working with the new Alberta government as it develops policy. Working collaboratively, we hope to meet the ongoing and increased service needs of individuals with FASD, particularly in the area of assessment and diagnosis. As the reporting in the Herald correctly identifies, there are numerous barriers to accessing assessment and diagnosis, and yet an FASD diagnosis can be a positive life-changing event for an individual with FASD and their families.
Finally, we continue to advocate for a disability-first approach to services, rather than a “one size fits all” approach. Specifically, recognizing the uniqueness and complexity of the individual and their needs, rather than standardized programming imposed through legislation, as in the current PDD model. The complex nature of FASD requires an individualized and integrated approach to service delivery that supports an individual across their span.
Thank you once again to Postmedia and Vanessa Hrvatin for highlighting this important issue.
Jamilah Edwards is the executive director of the Calgary Fetal Alcohol Network.
For more information on the FASD Service Network near you, please visit http://fasd.alberta.ca/service-networks.aspx