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. 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.