The Hon. the Speaker pro tempore: Honourable senators, when shall this bill be read the third time?

(On motion of Senator Patterson (Nunavut), bill referred to the Standing Senate Committee on National Finance.)

The Hon. the Speaker pro tempore: Is it your pleasure, honourable senators, to adopt the motion?

Hon. Senators: Agreed.

(Motion agreed to.)

(At 10:31 p.m., the Senate was continued until Tuesday, June 6, 2023, at 2 p.m.)

Appendix—Senators List

Hon. Pat Duncan: Honourable senators, I rise today to express my support for Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder.

I will begin by expressing my sincere thanks to my friend Senator Ravalia, his team and my own staff for their work and efforts on this bill, as well as to my colleagues who have spoken on this initiative before me. They have eloquently covered the impacts and the data showing how severe the challenges are. I’m also grateful, colleagues, for your patience as I have gathered my thoughts to speak.

My understanding of fetal alcohol spectrum disorder, FASD, has evolved over the almost 30 years that I have been dealing with this. In 1998, my colleague in opposition, Yukon MLA Sue Edelman, the health critic, gave notice in the Yukon Legislative Assembly of a motion that read in part:

THAT it is the opinion of this House that:

(1) there are no accurate or approximate numbers of Yukoners who suffer from fetal alcohol syndrome or fetal alcohol effects;

(2) fetal alcohol syndrome and fetal alcohol effects are completely preventable if parents do not drink during pregnancy;

(3) there are few if any supports for families and for those who suffer from fetal alcohol syndrome and fetal alcohol effects once they have left the education system — and this is particularly true in rural Yukon . . . .

The motion then called upon the Yukon government to provide support for early intervention and prenatal programs that prevent fetal alcohol syndrome, FAS, and fetal alcohol effects, FAE. In addition, she urged that the government:

. . . allow children who have been affected lead happy, productive lives in our society by being properly prepared for school and by giving their families ways to support these special children, then by examining the gaps in the service to youth and adults . . . by using our resources wisely by coordinating services to persons with fetal alcohol syndrome and fetal alcohol effects, and their families.

As honourable senators can tell, the language has changed since then. FAS and FAE are now FASD, recognizing the wide-ranging symptoms and conditions associated with FASD.

When in government with the opportunity to act upon the motion, I raised this issue at the national level. With the support of then-Alberta premier Ralph Klein and at our Yukon government’s request, the Alberta Alcohol and Drug Abuse Commission conducted a comprehensive review of Yukon’s alcohol and drug addiction services and program delivery. Our government initiatives included taking a more aggressive and proactive approach in the Yukon’s FAS/FAE strategy, one which recognized prevention as the only cure. We continued our work with our southern and western neighbours, initiating the Prairie Northern Conference on Fetal Alcohol Syndrome.

Honourable senators, a quarter of a century later, I find myself in the same discussions, albeit with changed terminology. Sadly, the statistics, such as we know them, remain the same, continuing or rising in this entirely preventable situation. Politicians, even those with a long history of good work, taking a great deal of time, might have thrown up their hands in despair. Thankfully, we have not and we are not giving up. The bill before us is an example of our commitment.

There has been progress over the past 25 years, and I would like to share some of the improvements we’ve seen. Specifically, in the Yukon, the story of progress is encouraging. In 2019, the Yukon government established the Yukon FASD Action Plan. Progress on the action plan was considerably slowed during the pandemic.

In January 2021, as part of a government-to-government relationship, the Council of Yukon First Nations, or CYFN, hired a coordinator for the FASD action plan. This individual works very closely with the director of the Fetal Alcohol Syndrome Society Yukon, FASSY. The director recently provided me with an update on their activities. The FASD action plan committees that have been established so far are awareness, prevention, diagnostic and, of course, the interagency committee. The knowledge exchange committee is anticipated to be developed as things progress. The groups are still looking to put together the family support committee, comprised of those who care for people with FASD, and an evaluation committee will also be established.

FASSY and CYFN will also be putting more pregnancy tests out in the communities and in Whitehorse. They are free of charge and available in bars and in the Yukon University buildings. The Yukon University has established campuses in most locations and communities in the Yukon. Information will also be publicly available in the form of posters at doctors’ offices.

As the CYFN coordinator stated to me, “Blatant advertising will eventually drill the message of abstinence during pregnancy is best.”

Honourable senators, this express message is included in another bill before us, Bill S-254, introduced by our colleague Senator Brazeau. Thank you, Senators Brazeau, Miville-Dechêne and others who have recognized Yukon’s initiatives with regard to warning labels on alcohol. I will leave my further remarks on that issue to another day.

Honourable senators, Yukon was also the first jurisdiction in Canada to respond in a fulsome way to the National Inquiry into Missing and Murdered Indigenous Women and Girls. The Yukon strategy entitled Changing the Story to Upholding Dignity and Justice: Yukon’s Missing and Murdered Indigenous Women, Girls and Two-spirit+ People Strategy from 2020 specifically mentioned FASD:

. . . it will take coordinated efforts to implement this Strategy. Women, girls, and Two-spirit+ individuals living with FASD or other disabilities will be fully included and considered.

The coordinator also shared with me that in the last six months the number of clientele that FASSY has been assisting went from 69 to 84 persons. Her educated guess is that this is just the tip of the proverbial iceberg. If they can manage to take the stigma off of FASD and educate people about it, the numbers should only go higher as people are made aware of their services.

Yukon has also dedicated funding — put the money where their mouth is — to FASD. The 2021 budget documents note that the FASSY received close to $800,000 in funding, which included funding to the interagency committee.

Nationally, since these discussions in the Yukon — some more than 20 years ago — the Canada FASD Research Network, CanFASD, begun in 2013, has grown in strength. The network’s initial intention was to increase the amount of FASD research within the provinces and territories of the Canada Northwest FASD Partnership.

The results significantly exceeded strategic goals, and, today, CanFASD operates across Canada. They support all stakeholders, finding innovative and practical ways to help persons with FASD, their families and their caregivers and assisting governments at all levels as well as practitioners and educational institutions in creating and disseminating evidence-based research and knowledge.

Another example of action was noted by our colleague Senator Colin Deacon: the Nova Scotia-based Strongest Families Institute. They offer their support services in the Yukon as well. They are truly a coast-to-coast-to-coast initiative.

Senators, I would be remiss if I did not acknowledge the volunteer efforts of FASSY and one volunteer in particular: Judy Pakozdy. This person has championed the cause of FASD for years, raising awareness in the Yukon and working with, supporting and showing up for those affected. A clear and direct individual, she has personally paid for newspaper advertising to raise awareness and urged governments to action. The ads were published as we gathered on the ninth day of the ninth month, FASD Awareness Day. She spoke to me at public events in a very clear way. She said, “We don’t need more words. We don’t need more plans. We need money and we need action.”

The bill is the action we in the Senate can provide in response to Judy’s plea. The money? That is not so simple. The Senate does not get to introduce a money item or demand that the government spend money, as we all know.

Today, I want to speak to the action.

The bill before us calls for a national strategy, a framework to coordinate our efforts to fight FASD. As Senator Ravalia, the sponsor, said in his speech to us, it will include measures to standardize guidelines, improve diagnostic and data reporting tools, expand knowledge bases, facilitate information exchanges and increase public and professional awareness, among other things. The bill is our specific action that we here in the Senate can provide in response to Ms. Pakozdy’s plea. Senator Ravalia’s bill is a major step in the right direction, and, perhaps, the longest and strongest step the Senate of Canada could take.

Today, I would like to strongly encourage senators to take this step, to walk together, to support the fetal alcohol spectrum disorder, or FASD, community and call upon the government for a national framework. Thank you. Mahsi’cho. Gùnáłchîsh.

Some Hon. Senators: Hear, hear.

(On motion of Senator Martin, debate adjourned.)

(At 6:28 p.m., the Senate was continued until tomorrow at 2 p.m.)

Hon. Nancy J. Hartling: Honourable senators, I rise today to support Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder.

As a member of the Senate Human Rights Committee and the Indigenous Peoples Committee, and from my many years working in the community as a social worker, I am deeply aware of the impact of fetal alcohol spectrum disorder, or FASD, on our most vulnerable populations.

Congratulations to Senator Ravalia for initiating Bill S-253. I would like to recognize that this bill was developed through extensive consultation with the Canada Fetal Alcohol Spectrum Disorder Research Network, also known as CanFASD, which is a collaborative interdisciplinary research network with partners across the nation, so I am very confident that this bill is informed by the most up-to-date knowledge and expertise.

Thank you, CanFASD, for your incredible work and your ongoing commitment.

Thank you to our colleagues who have spoken in support of this bill. Today, following my speech, Senator Duncan will speak to this.

Fetal alcohol spectrum disorder is a lifelong neurological disorder that is caused when a fetus is exposed to alcohol in utero. It is the leading cause of developmental disability in Canada.

Health Canada estimates that between 1% and 5% of the population may have the disorder; however, given that it is difficult to diagnose, it often goes undetected. Some groups are more impacted by this than others. For instance, among Canada’s prison population, the number of affected people ranges from 9.8% to 23.3% for the general prison population and could be as high as 50% for Indigenous offenders.

The disorder can affect many bodily systems, but its impacts are felt primarily in the brain. Many people with FASD show no outward signs of a disability, but this may mask a range of learning difficulties and memory impairments.

Here are some examples of what people with the disorder may demonstrate: forgetting how to do something they’ve already learned; problems with social communication despite, in many cases, having strong verbal skills; trouble reading social cues and understanding others; trouble understanding abstract concepts and internalizing rules; difficulty concentrating due to impaired self-regulation, and this is made more difficult because they may find it harder to grasp abstract concepts, such as reasoning, problem solving and connecting cause and effect. People with the disorder often have disrupted school experiences, have trouble interacting with others and keeping their jobs and may encounter financial difficulties.

The impact of the social determinants of health leads to a higher risk of depression, drug and alcohol addiction, homelessness and poverty. Without adequate interventions and supports, people with FASD and their families and communities are at a greater risk of negative outcomes.

I believe prevention with a pan-Canadian approach is critical. The development of a national framework provides an opportunity to explore this further at committee.

Early intervention for women who are at risk is key to better pregnancy outcomes and also to better outcomes for children who are born with FASD. CanFASD and the Centre of Excellence for Women’s Health co-developed a made-in-Canada model based on four levels of interventions focused on prevention where each level builds on the previous one. As time doesn’t permit me to go into the details of all of their tremendous work, I will simply give you the highlights of the levels of intervention, prevention and treatment of FASD.

Briefly, the first level of intervention includes raising awareness about the risks of alcohol consumption during pregnancy and empowering women and communities with the information needed to make decisions. This can take the form of national media campaigns, developing health promotion materials and producing easy-to-understand and readily available low-risk drinking guidelines. Culturally appropriate and trauma-informed approaches are extremely important for community-based health promotion strategies, especially in the context of Indigenous communities. Increasing awareness is included as an element of the framework under Bill S-253.

The second level is a provision of safe, non-judgmental spaces for all women of child-bearing age to have discussions on reproductive health, contraception, pregnancy and substance use with their health providers. Research has pointed to the importance of “brief alcohol interventions,” which are collaborative, often informal conversations that can occur between women and their health care providers and can provide an opportunity to engage openly on alcohol use and other risk factors that may not be immediately obvious.

These interventions can be the basis for lasting change by connecting women to the supportive services they need. They are valued by health practitioners as they are seen as less stigmatizing than screening for alcohol use and as open opportunities to discuss issues related to substance use, such as mental wellness and gender-based violence.

It is critical that these conversations happen in a non‑judgmental way because the factors that lead to women drinking can be highly complex. They are often driven by a number of social determinants of health. The stigma associated with drinking during pregnancy can result in women not seeking support, so it is important that women are able to participate in these interventions and follow-up treatments without the risk of losing custody of their children.

According to research by Dr. Shimi Kang, a professor at the University of British Columbia and a recent recipient of the Governor General’s Persons Case Award, an opportunity exists in the prenatal period to help women with addiction issues as they are then more likely to engage with the health care system and are more likely to abstain or reduce their substance use during this time. However, many women face barriers such as stigma in the form of guilt or shame, fear of losing custody of their children, prejudice towards mothers with substance problems, responsibility for dependent families and lack of child care and transportation.

Two thirds of all women entering addiction treatment services report a history of sexual or physical abuse — quite a lot when you think about it — which points to the need for an assessment of abuse history among addiction patients so that their trauma-related symptoms could then be treated, resulting in better addiction outcomes and therefore reducing the risk of negative pregnancy outcomes.

Brief interventions are important because they embody the “no wrong door” approach to care, where women and girls can access resources at any juncture in their lifespan through family doctors, midwives, nurses, anti-violence support workers and social workers. This goes hand in hand with preventing intimate-partner violence.

The third and fourth levels include holistic supports for pregnant women and new mothers with alcohol abuse and other health and social problems, including supports for child development. In a study of the most effective programs for reaching pregnant women at risk, researchers noted that the provision of the following were associated with the best outcomes: access to basic needs such as food and clothing; supportive housing; child welfare support; substance use supports; trauma and violence support; women’s health services, including parenting support; cultural programs; pre- and postnatal care and peer connection.

Colleagues, these interventions are at the core of the social determinants of health. These interventions can provide a strong base for future health of children with FASD because healthy mothers are more likely to be involved in care, are more likely to adhere to treatment and have healthier attachments to their children. This healthy attachment and family cohesion is emphasized in the Towards Healthy Outcomes for Individuals with FASD model developed by the Intervention Network Action Team of the CanFASD Research Network. Children who suffer from impaired detachments are at a higher risk of negative outcomes later in life, so a sense of stability, security and high family cohesion can act as protective factors. This document also contains a wealth of effective interventions which the committee could explore in larger detail.

With so much knowledge on early intervention, why are parents and children with fetal alcohol spectrum disorder still struggling? As Senator Ravalia aptly explained, provinces and territories each have different standards and resources allocated to the disorder. Although there are 73 diagnostic clinics in Canada, none are in rural areas, and they are not evenly distributed.

Diagnosis remains elusive for many due to the lack of resources dedicated to FASD. Some parents might fear obtaining a diagnosis because of the stigma associated with drinking during pregnancy.

In my home province of New Brunswick, we are fortunate to have the Fetal Alcohol Spectrum Disorder Centre of Excellence, located in Dieppe. They provide a range of services including prevention, diagnosis, intervention and support services, with special attention given to mothers’ needs and trauma. They now serve over 800 families a year. And although the centre of excellence is considered the gold standard in Canada, over 300 families in my region are still waiting for diagnosis, and many more cannot even get a referral because of circumstances out of their control. All of this is to note that with more than 4,000 youth in the school system in our area estimated to have FASD, most without a diagnosis, it is clear that the resources do not meet the needs.

Colleagues, there is a tremendous amount of research on FASD, and evidence-based best practices have been implemented in various ways across Canada. There may be other questions to explore, such as the father or male partner role in this issue. At committee, I hope that special attention will be paid to the social determinants of health for mothers, children and the family, and I hope the study will be bolstered with gender-based analysis and will take into consideration the many intersecting factors that lead to FASD.

The social determinants of health are at the core of prevention and lifetime interventions, and they deeply inform the treatment models that have emerged. Bill S-253 can provide a framework on which we can build, as an act of reconciliation and public health, to guide best practices in prevention, diagnosis and intervention across Canada.

I look forward to the next step by sending Bill S-253 to committee for further study. Thank you.

Hon. Salma Ataullahjan: 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.

(On motion of Senator Martin, debate adjourned.)

[Translation]

On the Order:

Resuming debate on the motion of the Honourable Senator Brazeau, seconded by the Honourable Senator Housakos, for the second reading of Bill S-254, An Act to amend the Food and Drugs Act (warning label on alcoholic beverages).

Hon. David Richards: Honourable senators, this is Senator Ravalia’s bill that I will speak to in support.

I grew up in an area where, years ago, 15-year-old boys carried wood on their backs to the yard in the fall and skipped school to work in the holds of ships for $1 an hour and, coming from very little, made decent lives for themselves, never took a penny that was not theirs or committed a crime, and so I believe in self‑determination and integrity as much as anyone in this chamber.

However, there are those so damaged in the womb, they come to the world with very little hope of integrity or knowledge of self.

My sister-in-law fostered children with fetal alcohol syndrome for many years. She did so because of an obligation, having had a foster brother with fetal alcohol syndrome and no longer knowing where he is or, in fact, what jail he might be in. He is in his late 40s and she is not really sure if he is still alive. He asked her the last time she saw him if she knew why he was in jail because he did not himself know or remember.

You might recognize fetal alcohol children; their features are ever so slightly altered. Many times they have a flat surface where the nose ridge should be. Oftentimes they cannot stand noise, and worse, as children, many cannot stand another’s physical touch, so a bond with someone like her foster brother to my sister-in-law was almost impossible.

Sometimes anything at all will unsettle a fetal alcohol child and she or he will begin to scream and be unable to stop. Therefore, from the time of birth, they are in their own world and no one else’s. But they are also susceptible to suggestion because so often they have a need and a desperate wish to belong to others. They turn up anywhere someone may care for them and do things in the hope that they too may be liked or loved.

They are also blamed by the parents who cannot handle who they are or what they, the mother and father, through their own addiction to alcohol, have created when the fetal alcohol child begins to create mayhem in the house. “If it were not for you, I would not be drinking. You are the one who caused all of this.” So many of them have heard this as children from the time that they were six years old. In the world that they were in, they begin — and parents often allow this and welcome it — to drink and do drugs themselves. I have seen six-year-old boys drugged and drunk, and by eight the parents have fled, and they too are in foster care.

They are sent to foster homes, and, as in the case of my sister‑in-law’s brother, finally no foster home can hold them and they end up on the street or in jail, sometimes for acts they cannot remember having done. My sister-in-law is afraid she will get a call to tell her that her brother is dead, and the love she has had for him and the sacrifices she made for other children, both White and First Nations — that in fact she has given much of her life to — will not have mattered.

In fact, it is a brutal scenario no social worker is really equipped to handle and certainly one that no judge or police officer can mitigate fully — not that they do not wish to, not that they have not tried.

“Why did you do such-and-such?” my sister, a judge in New Brunswick, has often asked young men and women with fetal alcohol syndrome, hardly older than boys and girls. There is no answer except one of the most prevalent ones: Someone put it into their head to do so, and it seemed like a good idea at the time. Like the burning of houses along our street. Four houses were set alight by a First Nations boy with fetal alcohol syndrome. It could easily have been a White boy. People escaped with their lives, but the pets were lost, and one man rushed back in, desperately trying to find his three cats. The young fellow had picked that side of the street. He could have picked ours. And later, when they asked him why, he said he didn’t really know.

Someone said to me that this proves that they shouldn’t be born. But to me, it proves something else. It proves that all life is sacred, and through our own folly and missteps, we have lost our responsibility toward them, or their parents have, and all of us must begin to recognize this.

There is no mandate that will ever stop reckless or even criminal behaviour. The lives of many women and their partners are in turmoil; many have had little or no chance. The idea of social drinking is almost obligatory where I come from and where many of us come from. Still, I support this bill brought forward by Senator Ravalia and hope that his suggestions are given full weight, and anything that can be done, even in small measures, should be.

Labelling on bottles, as Senator Brazeau has suggested, is long overdue. And every bar in Canada might have a sign saying, “Alcohol consumption can be extremely detrimental to your unborn child, and excess drinking will cause fetal alcohol syndrome.”

As well, a functioning national database and programs to educate are needed from one end of the country to the other to indicate the serious nature of this problem.

If even these small measures had been in place some years before, my sister-in-law might not be seeking in vain to find her brother, lost in a network of jails, and the houses on my street might not have been burned in the middle of the night.

For these reasons, I ask for your support of Senator Ravalia’s bill. Thank you.

(On motion of Senator Martin, for Senator Ataullahjan, debate adjourned.)

Hon. Colin Deacon: 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.

(On motion of Senator Ataullahjan, debate adjourned.)

On the Order:

Resuming debate on the inquiry of the Honourable Senator Coyle, calling the attention of the Senate to the importance of finding solutions to transition Canada’s society, economy and resource use in pursuit of a fair, prosperous, sustainable and peaceful net-zero emissions future for our country and the planet.

Hon. Mohamed-Iqbal Ravalia moved second reading of Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder.

He said: Honourable senators, I rise today as the sponsor of Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder.

This is a subject that is particularly important to me, as I know it is to many of my colleagues here. It is a subject that I became well acquainted with as a rural family physician.

I would like to express my gratitude to Senator Pat Duncan, who has been involved in this disorder community in the Yukon for decades, and who has shared her experience and expertise on this issue. Thank you, Pat.

I would also like to thank Senator Anderson and Senator Christmas for their sage advice as I worked through this bill.

Colleagues, Bill S-253 was developed through extensive consultation with the Canada Fetal Alcohol Spectrum Disorder Research Network — CanFASD for short — which is a collaborative, interdisciplinary research network with partners across the nation.

The network brings together a diverse array of professionals: academics, specialists in women’s health, individuals who are involved with criminal justice, developmental pediatricians, psychologists, psychiatrists, social workers and Indigenous advisers.

These professionals work with, or as part of, CanFASD’s staff and board of directors, as well as its Family Advisory Committee, who have lived experiences as caregivers of people with the disorder across Canada.

I’d like to start by providing context on the subject that this bill is seeking to address. The consequences of prenatal alcohol exposure were first described more than 40 years ago. The term “fetal alcohol syndrome,” or FAS, was first used to describe the cluster of birth defects due to prenatal alcohol exposure, including growth restriction, craniofacial abnormalities and intellectual disabilities — all with lifetime consequences.

The term “fetal alcohol spectrum disorder,” or FASD, has since been adopted as a diagnostic term to actually describe a much broader spectrum of presentations and disabilities resulting from exposure to alcohol in utero. The impact of alcohol varies with the amount, timing and frequency of alcohol consumed and depends on a number of other factors, including the genetics of the fetus and mother and the overall state of health of the mother, as well as other social, economic, physical and environmental factors.

The disorder can manifest in a wide variety of symptoms, but those with the disability often face difficulties in areas that include a wide spectrum and wide arena. They include motor skills, physical health, learning issues, memory, attention, impulsivity, communication issues, emotional regulation and social skills. While every individual is unique and possesses their own strengths and abilities, dealing with these challenges can very much be a dilemma for those with the disorder, and one that requires varying degrees of ongoing support from family and other sources.

It’s a complex, multi-faceted issue that affects Canadians in all walks of life in all regions of the country. It is, for context, the leading neurodevelopmental disorder in Canada, affecting 4% of the population. That’s more than people with autism, cerebral palsy, Down syndrome and Tourette syndrome combined.

However, there are indeed two key distinctions when it comes to the disorder. First, it is much harder to diagnose than most other neurodevelopmental disorders, and second, it is preventable.

The fundamental goal of this bill is to promote better outcomes in both prevention and diagnosis as well as to improve support for those affected and to ensure that they can live their lives to the fullest potential without carrying a stigma.

Colleagues, the issue that this bill is aimed at addressing is the lack of a comprehensive, coordinated national framework. As we know, with Canada’s 10 provinces and 3 territories, it can feel like we sometimes have 13 separate health care silos or that we live in 13 fiefdoms. As it currently stands, access to FASD prevention, diagnosis, interventions and supports across our provinces and territories is patchy and, unfortunately, uncoordinated at best. Making a diagnosis of the disorder requires a multidisciplinary team and involves complex physical and neurodevelopmental assessments.

In 2005, the Canadian Medical Association Journal published an international, collaborative and evidence-based guideline for diagnosis related to prenatal alcohol exposure. Since then, the field has evolved and mushroomed and additional evidence, expertise and experience has emerged. An updated recommended guideline was published in 2016 that underscores the importance of pre-pregnancy counselling and prevention.

The guideline includes standardized screening and referral and early intervention measures, as well as the composition of the core diagnostic team. This team must include a child development psychologist, pediatrician, speech language pathologist, psychiatrist, occupational therapist and a physician overseeing the team, depending on the age of the individual assessed. In the current context of our health care crisis, you can only imagine how difficult that would be.

Colleagues, there are 73 diagnostic clinics across Canada, and those clinics are not evenly distributed. There are provinces that currently don’t have a single diagnostic clinic. Even if a province has these clinics, most have lengthy waiting lists or very limited capacity and are almost never located in rural or remote areas. As you can imagine, it can be particularly challenging in these areas to find all the specialists required to properly operate a clinic. That was indeed much of the challenge in my practice lifetime.

There is no consistent, pan-Canadian tracking system in place, so CanFASD, the national research network, relies on smaller provincial studies and extrapolates its data. Less than half of the diagnostic clinics participate in contributing to the national database, typically due to staffing shortages and significant time constraints. As a result, the numbers we rely on from the database cannot possibly accurately reflect the prevalence or distribution of this disorder across our country. This means that there is a significant but ultimately unknown number of Canadians with FASD who are unidentified and therefore undiagnosed. The problem is particularly acute in those populations that have compromised social determinants of health, including those in the child welfare system, justice and corrections and our Indigenous communities.

Colleagues, we are fully aware of the role our esteemed colleagues at the provincial level play across Canada. Some provinces and territories, including Alberta, Manitoba and the Yukon, already have a specific strategy or framework in place to promote FASD prevention, improve measures for diagnosis and increase supports for those affected. These three strategies share broad foundational goals such as increasing awareness of the consequences of drinking alcohol while pregnant, promoting prevention of drinking while pregnant, increasing access to assessment and diagnostic clinics, supporting new research to ensure strategies are informed by evidence-based practices and providing other supports and services for people with the disorder and their families and caregivers.

Other provinces and territories have other past or present strategies that could help inform the federal government with their own FASD framework. For example, British Columbia had a strategy from 2008 to 2018. Saskatchewan has the Cognitive Disability Strategy, which is meant to provide services to address the unmet needs of people with a broader cognitive disability and their families. Ontario’s 2017 budget included money for FASD supports, but the strategy was not released. P.E.I. has the Mental Health and Addiction Strategy 2016-2026, and there is the Changing the Culture of Alcohol Use in Nova Scotia strategy of 2007, which incorporates FASD into its broader provincial strategies of alcohol awareness and prevention. New Brunswick is building on the experiences of other provinces and territories and is currently developing an interdisciplinary provincial strategy. In my own province of Newfoundland and Labrador, we recognize that the support of provincial FASD networks in the Provincial Alcohol Action Plan has gone a long way. The intent is to reduce harms and costs within our province, and the report was released in July 2022. Nunavut is currently working toward a strategic disability plan.

Senators, this bill is not designed to reinvent the wheel but to build on the existing work that has been conducted. It can go a long way to informing us on a going-forward basis.

Since the early 1980s, a patchwork of awareness campaigns has grown to support women at risk of using alcohol during pregnancy, as well as to meet the needs of peoples and communities affected by the disorder. Informed by research, rhetoric has shifted toward destigmatizing mothers who have used alcohol during pregnancy. Let me say that again because, unfortunately, many women bear this burden and stigma in a lifelong manner. The rhetoric has shifted toward destigmatization, and an effort is being made to ensure that there are early intervention measures readily available. The earlier the diagnosis is made and the earlier interventions take place, the better the outcomes in the long term.

Research, monitoring and evaluation of individual initiatives has also gradually increased.

Given the complex nature of this disorder, it is not strictly a health care issue. Rather, it impacts other areas that are very much the responsibility of our federal government, including, in particular, criminal justice and the economy. As a result, successive federal governments have made some efforts to support specific projects or programs.

For example, in 2003, the Government of Canada released the Fetal Alcohol Spectrum Disorder (FASD): A framework for action. The Framework for Action is a tool to guide future action on FASD in Canada and is the result of national consultation efforts that initially took place in 1999 and again in 2002 to 2003. It stands as a vision for how jurisdictions can work together to improve the lives of those impacted by the disorder and, critically, to prevent alcohol-affected births.

The framework outlines five main goals: increasing awareness of the disorder and the impacts of alcohol use during pregnancy; increasing the capacity for resources and training for response to FASD; creating tools to increase screening, diagnostics and data collection; expanding knowledge and information gathering; and supporting critical action on the disorder.

The framework also specifically outlines the role of the federal government and states that it will continue to focus on developing and strengthening the coordination functions that ensure access to the necessary tools, expertise and resources right across the country.

In addition to forming the basis for action plans at the federal level, the framework was intended to guide interdepartmental work to address gaps and issues that are not currently undertaken in other sectors, including developing a national guideline — a wealthy country like ours should be able to do that — expanding scientific and social science knowledge relevant to both prevention and effective support for those affected; building the evidence base and establishing mechanisms for knowledge exchange between different jurisdictions; and, critically, increasing awareness of FASD among professionals across the array of sectors who work with people, families, communities and those affected by the disorder.

There is also a companion federal document entitled It Takes a Community, which was launched following discussions in 2000 with experts, provinces and territories and First Nations, as well as Inuit community representatives. The framework is based on the values, principles, objectives and needs identified by First Nations and Inuit communities across Canada, recognizing the impact of fetal alcohol spectrum disorder and strategizing on how it can be best addressed.

Honourable colleagues, that was over 20 years ago. The advocates, experts and those with lived experience are still calling on the federal government to take a leadership role in these areas.

Improving FASD prevention, diagnostic and other supports has actually thoroughly been studied in both Houses of Parliament. For example, in September 2006 in the other place, the Standing Committee on Health tabled a report entitled Even One is Too Many: A Call for a Comprehensive Action Plan for Fetal Alcohol Spectrum Disorder.

The main thrust of the recommendations put forward can broadly be summarized as a call to the federal government and the health portfolio specifically to develop a comprehensive action plan with clear goals, objectives and timelines. The committee reported that there was:

. . . little evidence of any progress beyond the 2003 National Framework on FASD. Despite the repeated efforts to see a comprehensive action plan . . . .

The government response agreed that a comprehensive pan‑Canadian action plan, developed in collaboration with the provinces, territories and stakeholders, is key to addressing the disorder.

Within our own chamber, the Standing Senate Committee on Social Affairs, Science and Technology has included recommendations in its report to improve prevention, diagnosis and treatment supports, including in the 2006 report Out of the Shadows at Last: Transforming Mental Health, Mental Illness and Addiction Services in Canada.

As our colleagues Senator Pate and Senator Cotter have pointed out to me — and may hopefully elaborate upon this — a lot of what we know about individuals with FASD comes through their involvement in the criminal justice system.

Our colleagues who are members of the Standing Senate Committee on Human Rights will recall the 2019 Interim Report — Study on the Human Rights of Federally-Sentenced Persons: The Most Basic Human Right Is to Be Treated as a Human Being. Nancy Lockwood, Program Manager at Citizen Advocacy Ottawa, discussed some of the problems that individuals with FASD encounter in penitentiaries. This helps paint a practical picture. I’ll put it in her words:

They are vulnerable to predators. They may experience sensory overload which makes them prone to outbursts and negative behaviours. They largely do not learn from previous mistakes and have difficulty understanding the rules of social interaction. People diagnosed with FASD also have difficulty with organization and time management, meaning they often do not arrive on time — or at all — for probation appointments.

She argued for the development of “alternatives to incarceration such as supervised residential settings and work placements” and “models that emphasize changing the environment not the person.” This sentiment was echoed again in the 2021-released fourth report Human Rights of Federally‑Sentenced Persons.

Honourable colleagues, as the Truth and Reconciliation Commission recognized, the criminal justice system’s inability to properly accommodate individuals with this disorder is an issue that disproportionately affects Indigenous people, who are being incarcerated at an ever-increasing rate, given longer jail sentences and are subject to harsher punishment in prisons than others in Canada.

Under the Truth and Reconciliation Commission’s Calls to Action, Action 34 states:

We call upon the governments of Canada, the provinces, and territories to undertake reforms to the criminal justice system to better address the needs of offenders with Fetal Alcohol Spectrum Disorder (FASD), including:

i. Providing increased community resources and powers for courts to ensure that FASD is properly diagnosed, and that appropriate community supports are in place for those with FASD.

ii. Enacting statutory exemptions from mandatory minimum sentences of imprisonment for offenders affected by FASD.

iii. Providing community, correctional, and parole resources to maximize the ability of people with FASD to live in the community.

iv. Adopting appropriate evaluation mechanisms to measure the effectiveness of such programs and ensure community safety.

I had the privilege of asking Minister Lametti, when he appeared before our chamber during Question Period a few weeks ago, about the screening methods available for FASD for offenders in the criminal justice system. He was unable to give me a clear answer about what options were available. This is an issue that requires further investigation, and we continue to collaborate with his office in this respect.

Outside of the criminal justice context, the Truth and Reconciliation Commission recognized the need for FASD prevention and treatment, specifically in Indigenous communities. Specifically, Call to Action 33 states:

We call upon the federal, provincial, and territorial governments to recognize as a high priority the need to address and prevent Fetal Alcohol Spectrum Disorder (FASD), and to develop, in collaboration with Aboriginal people, FASD preventive programs that can be delivered in a culturally appropriate manner.

The federal government has indeed made several investments in programs that help support First Nations and Inuit communities in preventing FASD births and treating those affected. For example, with financial support from the First Nations and Inuit Health Branch, what is now known as Indigenous and Northern Affairs Canada, the Pauktuutit Inuit Women of Canada — the national representative organization of Inuit women in Canada — released the Inuit Five-Year Strategic Plan for Fetal Alcohol Spectrum Disorder 2010-2015. The plan set out a vision statement, mandate, priorities and strategic directions that would guide how the community would collaborate with governments and other regional and local stakeholders over five years with respect to the problem of fetal alcohol spectrum disorder within Inuit communities across the country.

Since 2014-15, the federal government has put in place a Fetal Alcohol Spectrum Disorder National Strategic Projects Fund, which allocates $1.5 million annually to contribute to national projects supporting prevention, education and knowledge exchange and coordination of fetal alcohol spectrum disorder activities, for a total of $12 million over eight years. A list of funded projects is available on the program’s web page.

The Pauktuutit Inuit Women of Canada have since built on their tremendous efforts by developing a community-based awareness campaign to promote FASD prevention across their communities. I had the privilege of asking Minister Miller in our chamber a few weeks ago how recent programs were being evaluated and, again, I couldn’t get a clear answer. This is another area where we need to continue to dialogue with the federal government.

Despite these government initiatives, studies and report recommendations, many people affected by the disorder do not receive adequate and consistent support and services. The lack of an integrated national strategy, standardized diagnostic and screening tools and comprehensive epidemiological research has meant that progress toward consistent and effective prevention and support has been slow.

Honourable senators, I believe the time is now. We all know that substantive change is incremental — on the Hill it is glacial at times rather than transformative. However, delays in action are costing us. In considering inflation, recent reliable research has shown that the societal cost of fetal alcohol spectrum disorder in Canada is significant, topping $10.5 billion annually. This is without accounting for the ongoing global pandemic and any potential changes to these costs because of the pandemic. These costs are divided up into criminal justice costs, health care costs, educational services, social service costs and other indirect financial losses, including lost productivity.

The bill I’m proposing is very straightforward. The enactment of the bill would require the Minister of Health, in consultation with other ministers and stakeholders, to develop a national framework designed to support Canadians with the disorder, 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, amongst other things. This would be achieved within a specified time frame, with the express intention of working with the provinces, territories and stakeholders, including self-advocates, as well as Indigenous communities and organizations with predominantly Indigenous leadership. In addition to a specific time frame, the framework would be subject to parliamentary oversight.

While there are benchmarks, including timelines, Bill S-253, by design, is not overly prescriptive in what the framework itself should entail. The government must be allowed the flexibility to respect the consultative process of this legislation. This legislation would ensure a coordinated national framework aimed at supporting — critically — Canadians with the disorder, their families and their caregivers.

Honourable senators, a national framework to address FASD is long overdue. Given the complexity of this issue and the breadth of its effects, the existing patchwork of provincial and territorial approaches is simply not enough, as we’ve seen. Since 2020, the Government of Canada has recognized September as Fetal Alcohol Spectrum Disorder Awareness Month, and I’m proud to say that in my own province of Newfoundland and Labrador, the mayor of St. John’s, His Worship Danny Breen, has also made this declaration this past September. You may have also noticed on your Twitter feeds that many communities are beginning to recognize FASD. We can and should ensure that the federal government continues to take the appropriate steps to address a pressing, multifaceted issue affecting millions of Canadians.

Honourable senators, we all know this is not a partisan issue. We, as well as our elected colleagues, have heard from individuals affected by the disorder, their families, their caregivers, as well as experts and advocacy groups, that a coordinated national framework would help to improve their lives. This bill would mean one step toward increased, equitable access to diagnostic assessment and support services across Canada so that all Canadians with the disorder can achieve their full potential no matter where they live in this country. It would be one step closer to having a trained workforce that is FASD-informed across health, social, justice and education systems. It would be one step to support economic and social inclusion, and help to reduce the stigma associated with this vulnerable population.

Honourable senators, this bill is one step in the right direction. Thank you, meegwetch.

(On motion of Senator Martin, debate adjourned.)

The Senate proceeded to consideration of the sixth report (interim) of the Standing Senate Committee on Agriculture and Forestry, entitled Treading Water: The impact of and response to the 2021 British Columbia floods, deposited with the Clerk of the Senate on October 27, 2022.

The Hon. the Speaker: Honourable senators, when shall this bill be read the second time?

(On motion of Senator Ravalia, bill placed on the Orders of the Day for second reading two days hence.)

The Hon. the Speaker: Honourable senators, when shall this bill be read the second time?

(On motion of Senator Ravalia, bill placed on the Orders of the Day for second reading two days hence.)

Hon. Mohamed-Iqbal Ravalia introduced Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder.

(Bill read first time.)