Hon. Mohamed-Iqbal Ravalia moved second reading of Bill S-253, an Act respecting a national framework for fetal alcohol spectrum disorder. Still a long way to become law, but exciting to see it discussed and making its way through Senate. Click how a Bill becomes a law in the Senate for information on the process. This post will be updated as new information is shared.
See below for the video of the 20 minute presentation, the transcript / Hansard and a speech in support.
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:
- 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.
- Enacting statutory exemptions from mandatory minimum sentences of imprisonment for offenders affected by FASD.
- Providing community, correctional, and parole resources to maximize the ability of people with FASD to live in the community.
- 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.)
Update: Kids Brain Health Network shared a 5-part video of a Chamber Speech by Senator Colin Deacon (previous director at KBHN) in support of Bill S-253.
For background information, check out CanFASD. Links to information and social media images you can use to share.