Honourable senators, I rise today to speak on Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder. I would like to thank Senator Ravalia for introducing this bill. We have been aware of the serious and lifetime consequences of prenatal alcohol exposure for over 40 years, and yet Canada continues to lack a comprehensive, coordinated national framework.

Fetal alcohol spectrum disorder, or FASD, is not only a health issue; it is fundamentally about Canadians’ human rights. As things stand now, countless Canadians may be needlessly struggling from a lack of formal diagnosis and support. As with many issues I have spoken to in this chamber, FASD is often found among vulnerable segments of the population. I believe one of the most heartbreaking aspects of prenatal alcohol exposure is that it is ultimately preventable.

Honourable colleagues, I will be brief, as I believe this bill to be simple, necessary and long overdue.

FASD is not to be taken lightly, as it is the leading cause of neurodevelopmental disability in the country, affecting approximately 4% of the population, which represents over a million Canadians. Of course, there are most likely many more, but we lack the comprehensive data and accessible diagnostics to truly grasp the proportion of Canadians with FASD. Some are born with permanent brain damage, while others, exposed to large amounts of alcohol before they are born, suffer through withdrawal during the very first weeks of their lives. Among the primary disabilities of FASD are issues with memory, filtering out distractions and cognitive processing.

Senator Richards eloquently described the agony that children with fetal alcohol syndrome often live with. They are often unable to stand noise or physical touch, and they live in their own world. To make matters worse, they are susceptible to suggestion from a deep desire to connect with others and be loved. It is not surprising that many struggle to meet society’s age-based social and academic expectations.

Unfortunately, rates of FASD are much higher in certain segments of the population, such as low-income populations, children in care, individuals involved in the justice system, homeless Canadians and Indigenous communities. Research suggests that about 90% of individuals with FASD struggle with mental health issues, and nearly 60% find themselves involved with the justice system, either as an offender or as a victim.

Canadian researchers have estimated that among young offenders, youth with FASD are 19 times more likely to be incarcerated than youth without the disorder. Hence, Canadians with FASD are particularly vulnerable and may experience greater susceptibility to justice involvement and victimization.

The cognitive issues linked to FASD can also make it difficult to access housing, as they may struggle with time and money management, have memory issues and struggle to understand the consequences of their behaviours. Therefore, Canadians with FASD navigate a world in which they must live with the dual impacts of a cognitive impairment and environmental adversity, and they are more likely to experience homelessness.

According to a study exploring the lived experiences of individuals with FASD who are supported by the homeless-serving sector in Calgary, many individuals experiencing homelessness self-report a diagnosis of FASD. Studies also suggest that women experiencing homelessness tend to be more likely to have children with FASD, thus perpetuating a cycle of suffering.

Bill S-253 would require the Minister of Health to develop a national framework designed to support Canadians with FASD, their families and their caregivers. The framework would include measures to standardize guidelines, improve diagnostic and data-reporting tools, expand knowledge bases, facilitate information exchanges and increase public and professional awareness, to name but a few.

The research behind this bill is extensive and inclusive. I would like to congratulate Senator Ravalia on tackling this important yet often overlooked issue. I particularly believe that the required consultations with other ministers, representatives of the provincial and territorial governments, relevant stakeholders, Indigenous communities and organizations and any person or entity deemed appropriate will be crucial in the development of the framework.

My concerns regarding Bill S-253 have less to do with the bill itself and more to do with the Minister of Health’s application of the consultation requirements. The discrepancy between a minister’s perception of the success rate of consultations and the perception of those directly affected by the topic is often discussed in committee hearings. This has been particularly prevalent in the Human Rights Committee hearings on Islamophobia in Canada. I would be remiss to fail to highlight that recurring problem.

I was deeply moved by Senator Richards’ speech a few weeks ago, and I would like to take a moment to thank my honourable colleague for sharing such a personal and moving story. It was eye-opening and heartbreaking. I cannot even begin to fathom the distress your sister-in-law must face every day, wondering how her brother is faring.

Honourable senators, Canadians with FASD deserve to grow up in a safe environment rather than face disproportionate incarceration, stigmatization, violence and rejection. When I walk in Ottawa, outside this very chamber, I wonder how many homeless folks I come across could have been spared such a life of hardship if they had been given a proper chance. Thank you.