National Framework for Fetal Alcohol Spectrum Disorder Bill

Second Reading--Debate Continued

November 15, 2022

Honourable senators, I rise tonight to speak to Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder, or FASD. I stand in strong support of Senator Ravalia’s bill and am personally grateful for his initiative.

Immediately prior to my appointment to the Senate, I was a director and incoming chair of the Kids Brain Health Network, which supported the mobilization of research related to autism, FASD and cerebral palsy. It was in this capacity that I first began to learn about the shocking realities associated with FASD and the isolation, risks, pain and trauma that it visits on so many children and their families.

My remarks today are focused primarily on four points: First, FASD is an equal opportunity problem, the consequences of which are made so much worse because of judgment and shame. Second, the current cost of inaction across the lifetime of a child born with FASD far exceeds every other intervention alternative. Third, early diagnosis and intervention are essential to reducing the lifetime costs. However, the vast majority of current evidence-based approaches and tools are unavailable to most families. Fourth, remote delivery options hold important promise and the opportunity for Canada to lead globally as we work to address the needs of children, families, educators and so many others affected by FASD. They are substantial indeed.

To my first point, FASD is an equal opportunity problem. In Canada, approximately 70% of women of child-bearing age drink, and 50% of pregnancies are unplanned. We know from various epidemiological studies that about 30% of pregnancies are alcohol-exposed to some degree, and most often during the first trimester, before the woman even knows she’s pregnant.

A recent University of California San Francisco study found that one third of women discover they are pregnant at six weeks or later. This rises to almost two thirds of younger women, and marginalized women are even more likely to discover pregnancy past seven weeks.

Simply, in committee, I think it will be important to understand the degree to which judgment and shame actually discourage versus encourage willingness to access early diagnosis and treatment for FASD in those places where it is actually even available.

Now to my second point, which is the high cost of inaction. There have been a few attempts to calculate the cost of FASD to the Canadian economy. A Centre for Addiction and Mental Health — CAMH — researcher, using a population prevalence of 1%, found that the direct annual costs of FASD in Canada are approximately $1.8 billion per year. However, again, epidemiological studies have demonstrated that the actual prevalence of FASD in Canada is closer to 4%, so the annual costs are therefore very likely closer to $6 billion or $7 billion per year.

However, these costs are not concentrated in the health care system, as I initially expected they would be when I first started to learn about FASD. The tragic irony is that, by far, the largest costs associated with FASD in Canada are incurred by the justice system. Youth with FASD are 19 times more likely to end up in prison than those without FASD. The total estimated cost of FASD to our criminal justice system is almost $4 billion per year. Think about it: We spend almost $4 billion per year on criminal justice interventions involving those suffering from FASD, and we spend it because of the brain injury that they acquired while still in the womb, and it was not diagnosed and interventions were not available.

When Bill S-253 is studied in committee, I hope time is invested in trying to identify the costs of inaction for families, schools and for these children, and all the costs that are incurred in our social service, health care, justice and correctional systems.

Finally, and most importantly, please consider the opportunity costs resulting from lives that cannot and will not be lived as a result of our inaction.

Now to my third point — early diagnosis and intervention. Current Canadian guidelines recommend either making a diagnosis or providing an “at risk” designation for infants as young as six months. However, the reality is that most diagnostic clinics will not even see a child who is younger than six years of age, and those children who happen to be referred for an assessment typically sit on wait-lists for over two years because of inadequate diagnostic capacity.

Children younger than six years benefit most from interventions that have been demonstrated to mitigate the long‑term consequences of prenatal alcohol exposure, yet, today, we are systematically closing this window of opportunity to virtually every child and every family.

Early identification enables early intervention. The Kids Brain Health Network championed and co-funded techniques that enabled FASD-diagnosed kids to be provided with effective supports at an early age so they could reach their full potential and achieve a far superior quality of life. A much brighter, safer and less-expensive future sits before these children and families if we choose to pursue it.

I hope that time will also be spent in committee to identify and find the ways to overcome the systemic barriers that are preventing effective and cost-efficient diagnostic and treatment approaches from becoming the standard of care across and throughout Canada.

Systemic barriers exist due to biases, limited resources and limited access to technology and connectivity, and they especially include the siloing that results from the fact that FASD is not the responsibility of any body or any group, either within or between levels of government. FASD is everyone else’s responsibility, so it’s no one’s responsibility.

Fourth, I want to speak about the importance of harnessing remote delivery support for educators, parents and kids. Various remote support systems and services already exist. The Strongest Families Institute is one example. Based in Nova Scotia, they deliver service remotely in Nova Scotia, and in several other provinces and territories. Services like this train paraprofessionals to provide remote programming coaching to families, helping them to deal with issues such as inattention, impulsivity, non-compliance and aggression at home or at school — issues that are very common with children with neurodevelopmental disabilities like Fetal Alcohol Spectrum Disorder, or FASD.

As an entrepreneur who led a company that delivered an effective, cost-efficient and evidence-based reading intervention, as an entrepreneur commercializing university-based research and as a volunteer with the Kids Brain Health Network, I have seen far too much life-improving knowledge never applied in practice. You have heard me say countless times that Canada has a phenomenal research engine, but we have yet to build the reliable transmission that will convert that research excellence into opportunities, jobs and prosperity.

In the case of neurodevelopmental disabilities, this means that kids, families and communities are suffering unnecessarily, and society is paying a much higher cost. Kids, parents and families desperately need cost-efficient access to effective, evidence‑based diagnostic and intervention tools across and throughout Canada.

As I conclude, I hope the committee in its review will be sensitive to the need that we do not unintentionally pit one underfunded, underserved disability group against another in a fight for all-too-scarce resources. As I say this, I’m thinking of Bill S-203, an act respecting a federal framework on autism spectrum disorder, which passed third reading here in the spring and has now been introduced in the other place. It is a wonderful bill, but there is justifiably pent-up resentment about the limited attention and resources available to address the overwhelming needs of these families. This resentment is exacerbated when one disability is addressed in a way that actively excludes those dealing with other disabilities.

As a consequence, when Bill S-253 is considered at committee, I hope that opportunities might be identified to help build a more inclusive, pan-disability response for children and parents struggling with the effects of neurodevelopmental disabilities. Thank you, colleagues.

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