THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, November 28, 2024
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 11:30 a.m. [ET] to examine Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder.
Senator Rosemary Moodie (Chair) in the chair.
[English]
The Chair: Welcome, everyone. My name is Rosemary Moodie. I am a senator from Ontario and the chair of this committee. Before we begin, I ask senators around the table to introduce themselves.
[Translation]
Senator Boudreau: Good morning. Victor Boudreau from New Brunswick.
[English]
Senator Senior: Senator Paulette Senior from Ontario.
Senator Osler: Senator Gigi Osler, Manitoba.
[Translation]
Senator Cormier: Good morning. René Cormier from New Brunswick.
[English]
Senator Burey: Good morning. Welcome. Senator Sharon Burey from Ontario.
[Translation]
Senator Petitclerc: Good morning. Chantal Petitclerc. I represent the Grandville senatorial division in Quebec.
Senator Brazeau: Good morning. Patrick Brazeau. I represent the Repentigny senatorial division in Quebec.
[English]
Senator Seidman: Good morning. Senator Judith Seidman from Montreal, Quebec.
[Translation]
Senator Mégie: Good morning, Marie-Françoise Mégie. I represent the Rougement senatorial division in Quebec.
[English]
Senator Muggli: Good morning. Senator Tracy Muggli, Saskatchewan, Treaty 6 territory.
The Chair: Today, we are continuing our study on Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder. Joining us today for the first panel, we welcome the Honourable Senator Ravalia, who is the sponsor of this bill.
Thank you for joining us today. Senator Ravalia, you will have five minutes for your opening statement, followed by questions from committee members. The floor is yours.
Hon. Mohamed-Iqbal Ravalia, sponsor of the bill: Thank you, chair and members of the committee, and welcome to the staff.
Honourable senators, I thank you for this opportunity to address this committee to discuss Bill S-253, which calls on the federal government to develop a national framework on fetal alcohol spectrum disorder, known as FASD.
FASD is the leading cause of neurodevelopmental disability in Canada, affecting approximately 4% of the population. For context, that’s more than autism, cerebral palsy, Down syndrome and Tourette’s syndrome combined. Yet, FASD remains underdiagnosed, under-supported and under-acknowledged.
This lifelong disability arises from prenatal alcohol exposure and presents as a wide spectrum of challenges ranging from learning and physical difficulties to issues with attention, memory and emotional regulation. Individuals with FASD require lifelong support, but access to diagnostic and intervention services is inconsistent across our country.
FASD has two key distinctions, colleagues. First, it is challenging to diagnose. Proper diagnosis requires a multidisciplinary team and complex assessments, which create significant barriers for much of the country, particularly for families and individuals living with FASD in under-serviced rural and remote communities. The second critical element is that it is preventable. By raising awareness and educating health care providers and the public about the risks of alcohol consumption during pregnancy, we can reduce its prevalence and long-term impact.
Currently, Canada’s approach to FASD is fragmented. The lack of a cohesive national framework leads to gaps in prevention, diagnosis, treatment and research. Access to service depends largely on where you live, leaving many families without the support they need, and my bill intends to change that.
The bill does not intend to reinvent the wheel; it actually builds on existing efforts at the provincial, federal and community levels as well as the territorial levels. The bill calls on the Minister of Health to lead the development of a national framework in collaboration with provinces, territories, Indigenous communities and stakeholders.
There are five key priorities outlined in the bill. One is enhancing professional capacity; second, promoting research and collaboration; third, establishing national standards; fourth, raising public awareness and addressing stigma; and, finally, expanding on prevention, diagnosis and support.
The overarching goals of this framework are to reduce the prevalence of FASD through prevention and education; to improve the quality and accessibility of diagnostic and support services; to foster equity by ensuring all Canadians, regardless of location or background, have access to consistent standards of care; and to build a supportive environment that reduces the stigma and increases the public’s understanding of FASD and its complexities.
This bill also emphasizes the inclusion of Indigenous voices. Research indicates that Indigenous communities are disproportionately affected by FASD. Their leadership is essential to developing culturally appropriate, trauma-informed solutions that reflect their unique contexts and strengths.
Economically, FASD costs Canada an estimated several billion dollars annually. The figures vary depending on the source. These costs are attributed to health care, social services and related expenses. Developing a national framework with a focus on prevention, early diagnosis and lifelong support can significantly reduce these costs while improving lives.
Honourable colleagues, this bill is about collaboration, accountability and action. It will help improve the lives of individuals with FASD, their families and their caregivers. I thank you for your time and attention, and I welcome your questions.
The Chair: Thank you, Senator Ravalia.
We will now proceed to questions from committee members. For this panel, members will have four minutes for each question and that includes the answer.
Senator Seidman: Thank you, senator, very much for bringing this bill to us. There is no doubt that fetal alcohol spectrum disorder is challenging for a lot of reasons. Because I am an epidemiologist, you will probably anticipate my question exactly. It has to do with numbers, and it’s about prevalence.
All the scientific literature points to complex diagnostics meaning there isn’t a single causal factor for this disorder. It is multifactorial.
Senator Ravalia: Yes.
Senator Seidman: That alone creates complexities in estimates of prevalence. If you look at U.S. and Canadian estimates, most of them are 1% of the population, and it varies unless you get to subsets of populations or highly specific populations. But, generally speaking, in the U.S. and Canada, the prevalence rate is about 1%. I know that in the preamble to your bill, you use 4%.
My question is why are you using 4%? How do you understand arriving at that estimate?
Senator Ravalia: Thank you for your question. That is a particularly important aspect. One of the dilemmas we face nationally is the lack of a data module. We don’t know exactly how many individuals are impacted by this. Stigma is related to this, so individuals may feel stigmatized by confessing that they may have had alcohol consumption through pregnancy.
A lot of the data on which I have focused has been cited by active case ascertainment, known as ACA, through the Canada Fetal Alcohol Spectrum Disorder Research Network, or CanFASD. They used this gold standard for measuring FASD prevalence. ACA systematically assesses large populations using standardized diagnostic criteria. These typically yield higher and more reliable prevalence rates.
The figure is supported by an alliance with both global and Canadian studies that use this particular technique. But I agree with you completely that if we look at the context, if we look at subgroups, if we look at other factors including malnutrition, genetics, populations living on the margins, we see that these factors are built into the prevalence as well.
While I suggest 4% based on the fact that the CanFASD group is probably the group with the greatest amount of research in our country, I’m willing to accept that the instances might, perhaps, be lower or, as my bill progresses and we develop a larger database, we may be surprised by a larger prevalence.
Senator Seidman: I appreciate that and all the uncertainty around the prevalence. The reason I am asking about it, other than that there is uncertainty around it, is because the second paragraph in the preamble uses the 4% estimate and then says, “making it the leading cause of neurodevelopmental disability in Canada.” I’m not sure that’s true. That’s why I put that out to you.
Senator Ravalia: I’m willing to accept that. It was kind of our work with the CanFASD that emphasized that, unfortunately, this particular condition has been relatively under-reported and is not in the public’s conscience to the extent it should be. But your points are well taken.
Senator Osler: Thank you, colleague, for bringing this here today. I have two questions. The first is on access and the second is on prevention.
The national framework has several measures laid out in it, but it doesn’t mention access, specifically. We know the jurisdictional boundaries when it comes to health care services and the boundaries between federal and provincial-territorial. How can a national framework improve services to Canadians with FASD?
The second part of the question is on prevention. The Public Health Agency of Canada data shows alcohol use in females aged 25 and older has slightly increased from 2008 to 2017. How would a national framework target prevention efforts without increasing stigmatizing?
Senator Ravalia: Thank you very much.
In response to your first question, a great deal of this responsibility will be in the hands of the minister to engage key stakeholders and afford that opportunity. We recognize that, currently, diagnostic services and reporting mechanisms across this country are patchy at best.
Probably the best examples of work that has been done that is getting closer to the standards we would expect come out of Alberta, Manitoba and Yukon. There are provinces where there is not even a reporting mechanism.
We have over 70 clinics across the country. Only 26 actually report back to the Canada Fetal Alcohol Spectrum Disorder Research Network. The data we are getting currently is extremely patchy and anemic at best.
The point you raised about access is that, currently, the vast majority of people living in rural and remote communities, and on reserve, have little or no access to diagnostics. Those are in a closer tertiary environment may get in, but wait lists are, for example, in my own province, upward of two years plus. These clinics come and go.
The critical thing is that if the minister is able to get key stakeholders together and get buy-in from the provinces, territories and other partners, including Indigenous leaders and individuals who have lived experience, we might have a national framework and strategy that forces provinces and territories to start actually working on this key area.
Senator Osler: Thank you. If there is time, my second question was how to target prevention efforts without increasing stigma.
Senator Ravalia: As you know, previous programs have been elicited across the country through the Public Health Agency of Canada and its advice, but many of these have not had long-term follow-up. I think the key thing is, again, being at the minister’s table to be able to employ an opportunity to ensure we present this information in an understandable, non-threatening way across the board to the communities most impacted by this.
I think that can be done using technology, social media and digitization.
Senator Brazeau: Thank you, Senator Ravalia, for bringing this piece of legislation before us. As you are aware, I am a strong advocate and proponent of increasing policies around alcohol in Canada. I thank you and your team for doing this.
You mentioned that FASD has not been acknowledged. Could you delve into the reasons you believe this has been left in the back room, so to speak?
Senator Ravalia: First, let me begin by acknowledging the work you are doing. I think it dovetails in a neat way with what we’re attempting to do, and I sincerely acknowledge the hard work you have put into your bill.
One is the stigmatization. Certainly, in my years of practice as a rural family physician, as I dug deeper into situations where I had infants, children and young adults with undifferentiated neurodevelopmental disorders, it took quite some time before there was an acknowledgement that there had been alcohol use. Individuals feel extremely nervous, and particularly in smaller communities, the stigmatization can lead to alienation and social isolation.
Our attempts to bring this forward and minimize the risks of stigmatization and the willingness to work with campaigns and responsible authorities, including the Public Health Agency of Canada, is to reduce stigmatization.
Second, Canada is currently in a health crisis. The wait times even for simple access to specialty care is absolutely unbelievable. So dealing with an issue as complex as this that requires a team that includes a child psychologist, psychiatrists, occupational therapists, a community coordinator and family involvement is very difficult.
In my own province, the late Dr. Teddy Rosales, who worked out of St. John’s, did visiting clinics and took his team across to Labrador and other vulnerable areas. But it was extremely time-complex and costly to do that. Until we are able to devise a mechanism by which access to these services is more amenable, it will continue to be a huge challenge.
Senator Brazeau: Obviously, it is an uphill battle because from the statistics, approximately 80% of Canadians consume alcohol. Alcohol consumption causes seven fatal cancers, and only 25% of Canadians are aware of that.
What do you believe the awareness of Canadians is, percentage-wise, of the effects and negative impacts of FASD on the population?
Senator Ravalia: When you currently do a broad sweep, unfortunately, people are unaware of this. The awareness only arises in individuals who have to face the consequences of FASD. There is still a kind of ambivalence about this, and that is disconcerting.
Of course, there are also situations where you may have had a couple of drinks of wine with your friends and then, six weeks later, you find that you are pregnant, so that may have been completely unintentional. But public health advertising and reporting in friendly, non-judgmental, non-hostile ways are really the ways for us to educate the public about the risks of alcohol not only in the realms you are discussing but in this very critical area.
Senator Brazeau: Thank you.
Senator Petitclerc: Thank you so much, Senator Ravalia, for being here with us. I have one question, but before I go to the question I have, I want to continue on with Senator Brazeau’s question.
Can we inform women on — do we have data to really — when we talk about awareness to say even one drink — I know that when I was expecting, the message from the doctors was very clear. So that’s why I am a little surprised when you say that people are not aware; that really puzzles me. Is it that we don’t do enough or is it that there are not enough resources, like you said, so the follow-up with those women is not appropriate?
Senator Ravalia: It is bi-sectorial. It is very much independently dependent upon your physician or your practitioner. I know of individuals who go through their entire antenatal care without the word “alcohol” ever being mentioned, and there are other instances where it is emphasized.
Broadly speaking, it’s difficult to access the data because of the issue of individuals being unwilling to talk about this.
However, we’ve emphasized, certainly in the medical school curriculum, the importance of fetal alcohol spectrum disorder. But I do believe it is still undertaught and underemphasized even in medical curricula.
Senator Petitclerc: Thank you for this. I want to hear about how you see — because the bill mentions the importance of research and data collection, but, of course, it is a framework, it does not articulate how this will happen. I want to have your view on how the ongoing research and data collection — how you see it being funded, conducted, utilized, a bit of the architecture of it in your best scenario.
Senator Ravalia: The important emphasis — and this is a discussion we have had with CanFASD — is that because of a lack of resources, there is not enough opportunity to tabulate and feed back the research data into a national database. If you have 70 clinics — and that’s very inadequate for a country of our geography — and only 26 of those report back to a national database, it tells you how huge the gaps are.
So our intent and hope is that this framework will emphasize, during its evolution at the ministerial table, the importance of the necessary funding to be able to create a national database that is easily reportable using enhanced digital tools, including the use of AI, which is becoming a pertinent topic, as we heard from Senator Moodie yesterday.
We can also follow modules that have been developed in other countries, and in particular, Australia, New Zealand, Scotland and the United States are leaders in data collection. We do not need to reinvent this particular wheel. The important thing is being able to access, tabulate and deal with the data, and use that data then to be responsive in terms of, “This is what we show, this is what we need and this is how we move forward.”
Senator Cormier: Thank you for being here, Senator Ravalia. I will ask my questions in French, so if you just want to make sure you have your device for that. Of course, your bill covers a large spectrum of issues.
[Translation]
You’re talking about awareness, prevention, treatment and lifelong support. So, the challenges surrounding that reality are multifactorial. Your bill sets out a framework that includes measures to address the training needs of health care and other professionals regarding prevention and diagnosis and support measures for those who are impacted by it. I’d like to understand better. What measures do you think should be included? How does this relate to rural realities? I’m most interested in the reality of doctors like you, who work in rural areas and who must work to improve the health of citizens.
[English]
Senator Ravalia: Thank you very much for that question, Senator Cormier. I will address this from my own personal perspective. In my rural community, we realized that access to the diagnostic services that we required was extremely difficult, so we focused our work primarily on using a local team-based approach. I was fortunate to work in a milieu and an environment where we had nurse practitioners, nurse educators, a physiotherapist, an occupational therapist and a pharmacist, and critical for me was working with the school guidance counsellor and the school psychologist.
At the end of the day, we were able to use technology to connect with tertiary care centres, and we even had the privilege of some visiting clinics from specialists, but we had to devise our own model. What came out of that, one, was the education component — educating children from a young age, and particularly as they go through their sexual health training, on the hazards of alcohol. It was impressive. My guidance counsellor in Twillingate took on this responsibility, and it was interesting, then, when I visited the school and did sessions like this that there suddenly seemed to be a much greater awareness of the hazards of alcohol in pregnancy. That was particularly enlightening.
The second thing was that it is important in any primary care model and in rural communities to try and develop the type of model that we had established. What surprised me, at the end of the day, is that we were able to deal with a lot of the complex diagnostic criteria without necessarily having to be in an environment outside of your home environment, dealing with multiple specialists in an intimidating sense.
So, education, early on, at the school level, developing modules within your community using technology to access the higher-level needs and, thirdly, using your broader community. We, for example, would have sessions at the local Women’s Institute, the Lions Club, the Kiwanis Club. We would have a day of educating people about autism, FASD, other spectra. And it was interesting how the community was very responsive in this regard. Some of it has to come with on-the-ground community initiatives as well.
Senator Muggli: Thank you, Senator Ravalia, for bringing your energy to this important subject. I worked many years in the mental health and addictions field and held responsibility for the operations of a FASD program, so I appreciate everything you are saying. Our psychologist flew up North once every two months to see maybe three people. The assessments take a long time, hours and hours. Very challenging.
My question relates to measures to address training. Given we have such a shortage of child, youth and adult psychiatrists and psychologists and people who are able to even provide an initial diagnosis, is there a role for some kind of national training institute or how maybe the federal government could support research chairs in this area? I’m just interested in hearing your thoughts on that.
Senator Ravalia: Certainly, thank you very much for the work that you have done in this field. Very impressive and very educational to me as well.
What I have come to realize, not only from the perspective of a condition like fetal alcohol spectrum disorder, but the broader primary care restraints that exist in our country, is that, for too long, we have disproportionately focused on the physician model when, in fact, we have individuals out there including psychologists, social workers, nurse practitioners, occupational therapists and pharmacists who themselves can step up to the plate and meet these challenges.
In my community, we had three nurse practitioners. One of them focused on mental health issues, and so included in her portfolio was FASD. If there was a national conference, a training module or developmental clinics going on in the tertiary care centres, we supported her to go to these and she came back with the knowledge and became the local expert. She did the same thing, for example, with chronic obstructive pulmonary disease, or COPD, diabetes or menopause, et cetera.
There is an opportunity for universities to look at alternative training modules that are not necessarily physician-based or physician-oriented to conduct the preliminary assessment and then for subsequent, more detailed requirements to go on to the tertiary level.
Senator Muggli: Certainly one of the issues related to FASD is the incredible costs of incarceration and homelessness. How to even assess the real costs is almost impossible to do because as an epidemiologist, you would have to put a proxy to the costs of homelessness or the savings related to not experiencing homelessness. I am wondering about the connection between homelessness and FASD.
Senator Ravalia: I think the evidence is pretty clear. What particularly moved me were conversations that I have had with some of our Senate colleagues, and I pause for a moment to reflect upon my deep connection with Senator Murray Sinclair. God rest his soul.
I think of the many discussions we had about this field. He, in his work, recognized that FASD was such a critical element in terms of our incarcerated populations; hence the Calls to Action 33 and 34 of the Truth and Reconciliation Commission’s report.
Furthermore, Senators Pate and Arnot have talked about this in great detail as well.
We end up in situations where vulnerable people with FASD end up incarcerated. They are extremely vulnerable and labelled as disruptive, anxious, mentally unstable, et cetera. They are often thrown into solitary confinement and abused by other members of the prison population. This is a critical part of that. Early diagnosis, prevention or adaptability would hopefully reduce that slow spiral toward homelessness and incarceration.
Senator Senior: Thank you.
I want to get a sense of what you just ended on, which is adaptability. What does that look like at the community level? How are folks being supported who are assessed, diagnosed and, for lack of a better word, get treatment or support in the community?
Senator Ravalia: Thank you very much for that question.
Again, I will go back to my own practical experience in this realm. I think of a young gentleman in my community who had been diagnosed with a neurodevelopment issue. It eventually was diagnosed as FASD, but it was picked up early. We created a specialized school program for him. He was kept in the regular classroom, but he had a student assistant with him all the time. So when he came to assessments or examinations, he was given the extra time he needed.
He then graduated from Grade 12. What was most touching was that his fellow students picked him that year as the valedictorian so he would speak to the community. If there is one thing that Newfoundland and Labrador has taught me is that altruistic spirit and spirituality actually extend so broadly into the community.
He then went on to vocational training, but because we had the framework of his challenges, he went to a small community where he learned to handle heavy equipment. Eventually, he went on to work in Alberta at Fort McMurray. That is a success story.
However, equally, at the other end of the spectrum, I have had individuals who had delayed diagnoses, who were on a pile of different mental health assessments, medications — a slow spiral into drug abuse, including cocaine and meth. Eventually, they end up incarcerated.
So early diagnosis, recognition and putting in what, in a cost-effective way, might be relatively amenable solutions can result in a very positive outcome at the end of the day.
[Translation]
Senator Boudreau: I thank our colleague for joining us today on this very important issue. I congratulate you on this initiative. Obviously, the bill seeks to give the federal government the mandate to develop a national strategy to treat this disorder.
In reading the documentation provided to us in preparation for this meeting, we realize that, in the early 2000s, the Public Health Agency of Canada had developed a national strategy.
Obviously, if we’re here 20 years later, it’s a sign that the first strategy didn’t work out so well. I’d like to hear your thoughts on that. Where did we fail? What mistakes, oversights or omissions were made in the first strategy, and how can we get it right this time?
[English]
Senator Ravalia: Thank you very much for that question, Senator Boudreau.
I think the 2005 framework was an important foundational element. The accomplishments of that framework were that there was definitely increased awareness, and it introduced and facilitated some community-based programs. It began to contribute to a fundamental research foundation, and there was encouragement of early diagnosis.
The challenge we faced — and it’s one of the reasons I decided to move forward with my bill — was that the 2005 framework did not afford us measurable outcomes. Furthermore, there was inconsistent implementation. Implementation happened in areas where there was capacity in larger communities, but if you went to northern Labrador or to the territories, there might not have been the same awareness as there was in Toronto or Montreal.
One particular critical element of the 2005 initiative was that there was a limited focus on the lifespan support. We focused very much on the diagnostics and the pediatric avenue, but we forget that individuals with FASD have lifelong challenges. If we are not able to implement that as part of our broader strategy, we leave out a huge number of individuals who are vulnerable to spiralling out of control.
I also feel that this particular initiative in 2005 did not sufficiently emphasize stigmatization and awareness. I’m hoping that my bill will bring that element — that we do not need to stigmatize and point fingers at individuals who may have been exposed to alcohol in the prenatal period.
Furthermore, I believe that particular initiative lacked Indigenous consultation, and as we have moved forward and had champions, like Senator Muggli, who are talking about this, Indigenous consultation, partnerships, leadership and the ability to inform, educate and provide information to our Indigenous brothers and sisters have been a critical element that were missed in 2005.
Also, while this was a public health initiative, there wasn’t enough cross-sectorial consultation, I believe. We did not sufficiently engage with the departments of education or educational authorities on the ground. Social services were not included. The entire justice avenue was also left out.
So 2005 presents a beautiful foundation upon which we can build to include this. I hope this will be evolutionary. If it sits on the minister’s table and new initiatives and diagnostic criteria arise, and we get further information from our international partners, it would give us an opportunity to move forward.
[Translation]
Senator Mégie: Thank you to our colleague for being with us this morning. The Public Health Agency of Canada has been working on a framework for autism spectrum disorders since the bill received Royal Assent.
What lessons can be applied to the national fetal alcohol spectrum disorder (FASD) framework?
I’m asking because I took part in an event you organized, and some people told us that parents are afraid and prefer to say that their child is autistic so that he or she is less stigmatized. Some people say that, when a child is diagnosed with FASD, people say the mother was an alcoholic and that it’s no big deal. As a result, it’s as if it’s her fault.
Is there a link that could be made with what is being developed for autism spectrum disorders? Could this be used for FASD?
[English]
Senator Ravalia: The previous national frameworks, including for autism, diabetes and palliative care, have set an important baseline from which we can grow.
You raised the critical issue of stigmatization. This is, across the board, probably our greatest challenge if we are to move forward with this. The prospect of the appropriate use of educational tools and destigmatization may take a period of time. It may take a generation. But there are many positives from the Autism Strategy that can be transposed to my bill in terms of the areas we have already talked about — increased awareness, community-based programs, fundamental research contributions and the encouragement of early diagnosis.
Diagnosis can be done in a confidential way. When we ran our local clinics, we de-emphasized and destigmatized from the outset. Our focus was here we have an individual, a young boy, a young girl or a baby, who has obvious features of neurodevelopmental challenges. Let’s focus on how we can restitute that rather than focusing on the alcohol part of things.
I think there are lessons to be learned. I think there are lessons that can be applied. But, as a society, we have a tendency to judge, to stigmatize, to belittle and, unfortunately, to marginalize individuals like this, and when we do that, we throw them further and further into a deep hole of darkness, and that’s what we need to work on. If we start that education process early — childhood education, high school — then we minimize name-calling and labelling.
[Translation]
Senator Mégie: In the prison system, in prisons, was there at any point an effort to say that this disorder explains why individuals committed crimes and ended up in prison? Do you know if anyone has thought of doing that research?
[English]
Senator Ravalia: Yes, I think that evidence is pretty clear. I think the work that has been done by leaders in this regard including the individuals I have mentioned before — but it is the lack of resources and the lack of supports that have led us to this place. Thank you.
Senator Burey: Senator Ravalia, thank you for bringing this effort, and Senator Brazeau tag-teaming. Wonderful. Of course, this was part of the work that I did and do as a pediatrician. I am so thankful that you are building on the previous existing frameworks and expanding some of the areas that have not been touched. So thank you very much.
My question: You mentioned supporting the individuals in a lifelong perspective, which is phenomenal. But what I found — and that’s very important. But I want to go to the family support because that really is going to make or break the success of whatever happens. Caregivers have been sorely neglected.
We talked about the autism spectrum disorder framework. What kinds of supports for caregivers — looking at financial support, disability tax benefits — do you think that this bill could actually support?
Senator Ravalia: Thank you very much, Senator Burey, and thank you for your work in this field, which, again, has been tremendously impactful and very important.
You raise a critical area. I know that, again, in my practice lifetime when I worked with family members, particularly caregivers, the incidence of burnout was very high. I hope that this framework will explore caregiver supports, including respite programs, which we developed in my community, which kind of felt helpful when mom and dad could take two weeks off and go to Florida, knowing that their child was cared for in their absence.
Respite programs have become sort of an important stopgap measure. We could also look at training for managing FASD-specific challenges because particularly when there are emotional lability and physical outbreaks and the child gets older, it can get extremely difficult for a parent to manage that. So having specific training programs and opportunities to minimize those risks would go a long way.
Access to mental health supports is another critical element, and then the one thing that worked well in my community was a support program for families that were kind of creating a self-awareness program within families that had family members afflicted by FASD.
Additionally, I would hope that the minister would look at things like disability breaks, tax breaks and other financial incentives, but it is that lifelong caregiver responsibility and the huge negative impacts that you have seen in primary caregivers that I think really needs to be addressed and is a critical element of this bill.
Senator Burey: I was just going to underscore the importance of the education and the awareness because almost 40% of pregnancies are unplanned, so you can’t wait until — could you just underscore the education bit of it.
Senator Ravalia: That is so critical. Even with today’s access to social media and many educational platforms, this is an area that, unfortunately, seems to be missed, is in the weeds, and as I have alluded to earlier, starting that education germanely and through the educational programs, emphasizing it at the medical school student and resident level and continuing to emphasize it particularly to individuals who provide prenatal and antenatal care is a crucial element.
The Chair: We will now go into the second round. We probably have time for the three names I have, Senator Seidman, Senator Brazeau and Senator Cormier. But please be concise and stick to our timing. Thanks.
Senator Seidman: Thank you, Senator Ravalia, for continuing to answer our questions so well.
I want to refer back to the Public Health Agency of Canada’s Fetal Alcohol Spectrum Disorder Program that we have talked about, and there were several questions asked about it. They have prepared a report that they published in 2023, so this is an active, ongoing program. It is not that they just published some framework in 2005 and now it is stagnant. It is an active program. In fact, if I look at their recommendations, one has to do with continue strengthening surveillance efforts with a focus on establishing building blocks for surveillance, and one has to do with enhancing the program’s performance measurement approach with a focus on impact. Have you met with them and tried to figure out how your bill is going to dovetail with the existing program?
Senator Ravalia: Thank you very much for that question, Senator Seidman. We have not directly met with them, but we have obviously used that data as part of our buildup towards this bill. The work that they are doing and the sort of pre-emptive foundational elements are critical, and they would, in fact, dovetail very nicely with our long-term evolution of this program. It’ll be a critical pathway. Engagement with public health, whether it is vaccinations or a whole host of issues, including antimicrobial resistance, I think this will fall beautifully into that realm as well, and that partnership is critical. We hope that as we progress forward — I know CanFASD worked closely with them in partnership as well.
Senator Brazeau: When we are talking about stigma, what are your views with respect to what role physicians, health experts and doctors have with respect to reducing the stigma? Contrary to Senator Petitclerc, I remember a time period when doctors were telling women that drinking even small amounts of red wine was good for them and, even closer to them giving birth, drinking red wine was a good thing, and I remember that in the 1990s and the 2000s. What role do they have today in terms of, I don’t know, having a campaign to raise awareness?
Senator Ravalia: Again, thank you very much, Senator Brazeau. Your work on this has been very critical. I feel that, since your bill has started to germinate and move forward, I am reading more and more about the awareness of alcohol. I have actually had people say to me that they had no idea that alcohol can cause cancer. So I thank you.
I think we can work in a joint way to enhance this education. When I did my training in Rhodesia, which is now Zimbabwe, in the 1980s, we would do morning lectures and then everyone would go to the medical school pub where people would have two, three or four pints of beer before they did their afternoon clinic. That was the cool thing to do as you smoked cigarettes on war drums.
Fortunately, we have come a long way since then, but there still isn’t enough emphasis. I still think there is a lot of societal pressure on an occasional drink, a tot of whisky at bedtime or whatever is fine. It will take us time to get that educational piece through.
But I think this type of evolution of this bill and, more important, the work that you are doing, may be the catalysts that afford us change.
Senator Brazeau: Hopefully. In terms of this, there are warning labels in the United States with respect to pregnancy, but we have nothing here in Canada. Thank you for your work.
Senator Ravalia: The dilemma is always that the federal government is responsible for production, taxation and labelling and the provinces are responsible for retail distribution, pricing and age limits. There is always that divide, and that’s where we run into trouble with a federation and 13 fiefdoms trying to find common ground.
Senator Brazeau: I’m Indigenous. I know.
Senator Cormier: My question will follow up on the last statement that you made around — this is a great national framework, it is well intended — but, of course, the success of this framework depends upon how the provinces and territories are going to apply it and prioritize it. We know the federal government has agreements with provinces and territories.
So if you were the minister responsible for this framework, how would you convince the provinces and territories that among all the issues and all the measures — it is multifactorial — how will you convince them to prioritize this?
Senator Ravalia: For me, that goes back to the way we have historically dealt with federal transfer payments. Money goes to a province, and it is used at the behest of the province. It is responsive to things like cardiac care and joint replacements.
If I were the minister, I would want to create accountability, and my envelope of funding to each province and territory would include dedicated funding for this type of area — not just FASD, but, say, childhood neurodevelopmental challenges. That way, each province would be aware that, every year, it is getting a dedicated fund to focus on this particular area.
That is hypothetical, and maybe that is dreaming. But until we have accountability for the money that is coming in, funds are channelled into all kinds of directions. When I was working closely with Newfoundland and Labrador health services, meeting with deputy ministers, it was astonishing when you actually looked at how money was being spent and how many areas, which were not the squeaky wheels, were getting no grease at all. Unfortunately, the pediatric field, as you know, has historically been underfunded. The ultimate costs to the system are so huge.
Senator Cormier: I want to thank you for your incredible work, and I want to thank Senator Brazeau for the work he is doing on this topic, which is so personally important to him. Thank you.
The Chair: This brings us to the end of the first panel. I would like to thank Senator Ravalia for his testimony today, for his excellent answers and meticulous approach to filling us in.
We now welcome the following witnesses joining us in person, from the Public Health Agency of Canada, Michael Collins, Vice-President, Health Promotion and Chronic Disease Prevention; Sally Scott, Executive Director, Division of Children and Youth; from Indigenous Services Canada, Jennifer Novak, Director General, Mental Wellness and Health Promotion, First Nations and Inuit Health Branch; and from Health Canada, Maria Sterniczuk, Executive Director, Office of Strategic Initiative and Engagement. Thank you for joining us today. We will begin with opening remarks from Mr. Collins, followed by Ms. Novak. You will each have five minutes for your opening statements, followed by questions from committee members.
Mr. Collins, the floor is yours.
Michael Collins, Vice-President, Health Promotion and Chronic Disease Prevention, Public Health Agency of Canada: Thank you very much. As was just noted, my name is Michael Collins. I am the Vice-President of Health Promotion and Chronic Disease Prevention Branch at the Public Health Agency of Canada, or PHAC. I am really pleased and feeling very reinforced to be joined by my colleagues Sally Scott from the Division of Children and Youth, also from the Public Health Agency of Canada; as well as Maria Sterniczuk, Executive Director of the Office of Strategic Initiatives and Engagement, or OSIE; and Danielle Bryan, I think, is also here, joining us from the Controlled Substances and Cannabis Branch at Health Canada; and, of course, Jennifer Novak, who will be speaking momentarily, from Indigenous Services Canada, or ISC.
[Translation]
Before we start, I would like to acknowledge that I am joining you today from the unceded traditional territory of the Algonquin Anishnaabeg People.
Thank you for having us here today as you consider Bill S-253. As you are aware, fetal alcohol spectrum disorder (FASD) is a lifelong disorder caused by prenatal alcohol exposure. FASD is a serious public health issue, but it is preventable with the right supports.
[English]
As part of the Public Health Agency’s role to promote health and prevent and control disease, the agency contributes to addressing fetal alcohol spectrum disorder primarily through prevention, data, knowledge development and exchange perspectives. There are a few things that I want to draw to your attention, some concrete examples: funding for time-limited projects to develop nationally applicable tools, resources and knowledge through the FASD National Strategic Projects Fund; two, funding community-based programming to support broader protective factors for child health and prevention of substance-related harms, including FASD; three, leading the development of options to advance and implement ongoing national surveillance of FASD and data tracking of FASD and maternal alcohol consumption exposure; and, finally, collaborating with other government departments and key stakeholders on FASD and prenatal alcohol exposure to exchange information and best practices.
This goes back quite some time because, since 1999, the FASD National Strategic Projects Fund has enabled the agency to collaborate with many partners and stakeholders across the country. A couple of quick-hit examples, and more recent: funding the Canada Fetal Alcohol Spectrum Disorder Research Network is a project that was in place — it actually is in place from 2024-26, which is to design and pilot an online training course to better equip front-line children’s program staff in supporting children and families with challenges related to FASD.
A second example — and we will maybe talk about this later — is also active funding we have on the go at present with the Canadian Academy of Health Sciences, which is something we initiated in 2023 and will conclude in 2025, to conduct a comprehensive scientific assessment of FASD, which includes a review of relevant FASD data, literature, policies, programs and practices as well as engagement with key partners to identify challenges as well as opportunities to strengthen Canada’s approach to addressing FASD. We anticipate receiving this report from the Canadian Academy of Health Sciences in early 2025.
While the agency’s role primarily lies in the promotion of healthy pregnancies and prevention of FASD, we know that addressing FASD and its impacts requires the involvement of partners from across the country and across various jurisdictions, as mentioned in the previous panel, and sectors of society, whether it is health, education, social services, the legal system and more.
As far back as 2003, as I think most folks around this table know, the federal government responded to a call for leadership on FASD by leading national consultations to develop FASD: A framework for action. This comprehensive framework presented a vision for how jurisdictions could work together to address the prevention of FASD and improve outcomes for those impacted.
However — and this brings us to where we are today — despite this work, key challenges remain given the complexity of addressing issues across multiple levels of government and across sectors. As you are likely aware, people with FASD can face many challenges and, in many cases, they require lifelong assistance through a wide range of supports and services in areas of primarily provincial and territorial responsibility such as health and education. Other areas, such as surveillance and data collection, are a shared responsibility of federal, provincial and territorial governments.
So to conclude, I think we recognize addressing FASD in Canada will require a comprehensive and collaborative approach. There are lots of things for us to build off. It sounds a bit carried away here, but I think we have a right path to pursue. The report that I referenced earlier that we are expecting from the Canadian Academy of Health Sciences will provide us with more information, grounded in evidence, on where further efforts are needed. It will help to inform action that can be taken on a national level, across multiple sectors and multiple jurisdictions. It will also serve to help prioritize key areas for federal leadership across the Government of Canada.
With that, I will conclude, and thank you for your time.
The Chair: Thank you. Ms. Novak, please proceed.
Jennifer Novak, Director General, Mental Wellness and Health Promotion, First Nations and Inuit Health Branch, Indigenous Services Canada: Thank you for the invitation to appear with you all today. I am humbled to be here.
Before I begin, I’d like to recognize that we are on the unceded traditional territory of the Anishinaabeg Algonquin people.
While Indigenous Services Canada has more of a limited role related to your study of Bill S-253, I will aim to provide you with some context in terms of the experiences of Indigenous populations related to FASD as well as the services currently supported by the department.
I think it became very clear in the last hour that it is widely understood that the rates of FASD across Canada are not well tracked or, frankly, even reported. This is even more evident in Indigenous populations for a number of interrelated factors. First, there really remains tremendous stigma and shame associated with FASD given that the disorder is a direct consequence of alcohol consumption during pregnancy. This has resulted in reluctance among parents or caregivers to seek the diagnosis and the associated supports.
Secondly, for Indigenous populations specifically, racism and discrimination in our health care system continues to compound the challenges with seeking and obtaining a diagnosis, as well as the supports. The death of Joyce Echaquan reminds us all that for many Indigenous people, racism in Canada’s health care system remains a reality that can result in negative impacts on their care and even, at times, with some dire consequences.
But for those who do, at the end of the day, seek treatment, FASD can present similarly to other conditions, as we have heard earlier, impacting neurodevelopment. So unless there is noted alcohol consumption in pregnancy, FASD may not be identified or, in fact, at the other end of the spectrum, may be erroneously identified.
As an example, autistic Indigenous children are more likely than non-Indigenous children in Canada to be diagnosed with FASD as a consequence of health care provider biases and assumptions about Indigenous peoples and alcohol consumption.
Similarly, widespread discriminatory child welfare practices make it less likely for prenatal alcohol consumption to be disclosed for fear of child apprehension.
Unfortunately, these factors have not only influenced our rates of diagnosis, but the ways in which people seek their treatment. Even with this in mind, we are increasingly seeing research indicating that the assumption of a higher prevalence of FASD in Indigenous people might be wrong and that, in fact, it is likely to be around the same or lower than the general Canadian population.
When it comes to care for FASD, there is generally limited access to diagnostic services within the health care system across Canada. Wait times can span years. This is the case with the general population, but it is worse for Indigenous populations in Canada. Diagnosis and treatment of FASD is accessed through provincial and territorial health systems, including for those living in First Nations and Inuit communities. The First Nations and Inuit Health Branch, where I work, provides $17.9 million annually to fund FASD prevention and intervention programming in communities, to support families and caregivers and to connect with provincial services, including multidisciplinary diagnostic teams and other supports.
That being said, the First Nations and Inuit Health Branch also supports the development, delivery and management of culturally appropriate programs, services and initiatives for First Nations living in communities. It is hoped that advancing culturally relevant programs will improve health outcomes for those seeking care.
However, it should be noted that Indigenous partners across the country have expressed mixed views about targeted FASD prevention or intervention programming. Increasingly, communities are hesitant to provide services under the FASD label given the previously stated stigma, preferring to focus on overall maternal and child health, treating the whole person instead of one condition. That community-based maternal and child health supports help women and families navigate a complex health system and address a range of conditions. To respond to this shift away from a condition-specific focus and reduce fears of discrimination, some communities have opted to combine FASD and maternal and child health investments, allowing those who need a range of services to access supports without worry of stigma.
Indigenous Services Canada wants to continue to work with communities to support culturally appropriate prevention, intervention and navigation supports in the ways those communities choose and improve our system of care across that full spectrum, whether at the community, provincial or federal level.
Madam Chair, thank you for the opportunity to speak before you on this issue. I look forward to answering any questions you might have.
The Chair: Thank you, Ms. Novak.
For this panel, senators, you will have four minutes for your questions, which includes the answer. Please indicate to whom your question is directed.
Senator Osler: Thank you, witnesses, for being here today. My question is on data — understanding there is patchy data. So it is to all of you.
Does anyone have data on the proportion of individuals with fetal alcohol spectrum disorder in Canada’s criminal justice system? Also, could a new national framework lead to increased supports for individuals with FASD currently in the criminal justice system?
Mr. Collins: Sorry, it seemed to be an open question, so thank you for the question. I’m not jumping in with enthusiasm to sort of say that I know the answer to that. As was noted earlier, there are lots of challenges with recording data across the general population. You see figures from 0.1% to 3% — those are some of the stats that are cited across different populations.
So, no, I do not know. The Public Health Agency of Canada does not have that information, to my knowledge. We will go back and think about that and be 100% sure — but not having a line of sight in terms of that specific data set in terms of the criminal justice system and levels of FASD within that population.
To go to the second part of this question — can the proposed Bill S-253 — I think there is an opportunity. When we look at what is proposed, first and foremost, we consider what falls within federal jurisdiction and competency. Where can we leverage and where can we work to be a bit of a catalyst for provincial and territorial jurisdictions as well?
The surveillance — I keep saying we need to come up with a better term — but the data capture and the work we are doing at the Public Health Agency of Canada is one of those platforms where there is potential for us to do more. We have some project plans and ideas we are moving forward with, so the idea of going further and exploring the criminal justice system could be something that could be reflected upon in terms of whether there are data sets and avenues for us to pull up that data to respond to that potential gap. Thank you.
Senator Osler: I would invite anyone else to provide any —
Ms. Novak: I don’t have exact numbers for representation in the correctional system. You might want to invite Correctional Service Canada. They do have health services available through the organization. I know they do some surveillance and data as well.
I can say that the First Nations Information Governance Centre has done some surveys. Self-reported prevalence of FASD in First Nations children through our regional health survey has come down to about 0.5% in 2016. When we think about the correctional system, I think it is well-known that Indigenous people are overrepresented. I think we can all just infer from there.
Maria Sterniczuk, Executive Director, Office of Strategic Initiative and Engagement, Health Canada: Unfortunately, I don’t have anything to add to that. I have not seen that data in the work that Health Canada does. We do run a number of surveys on drug and alcohol use among Canadians through the Canadian drugs and substances strategy. But I’m not aware of specific data on FASD within the correctional system.
Senator Osler: Thank you all.
[Translation]
Senator Cormier: My question is for Ms. Novak but everyone else too.
Is there a risk that the measures set out in the bill are not enough to address the complexity of the underlying structural causes?
The social determinants of health, poverty, trauma caused by colonialism, homelessness… There’s nothing in the preamble to indicate that the issue identified in this bill may be linked to other factors. Will the national framework be less effective if all of that is not included in the bill?
Ms. Novak: Our department and our minister have not yet taken a position on the bill. What I can say is that, even in our department, when we look at the investment envelopes, we still have big silos.
If we look at the specific investment for FASD, it’s $17.9 million. However, we know that, even within our department, there are investments for maternal care, early childhood care and education resources. There’s even the program Jordan’s Principle, which invests $55 million in FASD.
When we start looking at a project, program or strategy, we need to look at what exists already and where there are silos.
We duly note your suggestion that we need to take a slightly broader approach and look at where we are investing, but we also need to have a unique approach to lifelong interventions.
Senator Cormier: Do you think this could be done using the current wording of the bill? That’s my question, really.
Ms. Novak: I can’t comment on the bill, but I can talk about the department’s current approach, which is to look at a person as a whole; that starts from the moment the baby is still in their mother’s womb to the end of their life. Our aboriginal partners really look at the whole picture.
Sally Scott, Executive Director, Division of Children and Youth, Public Health Agency of Canada: I’d like to thank Senator Cormier for the question.
[English]
The point you raised is one that is present in the minds of Public Health Agency of Canada, the broader social determinants of health approach and the impact on fetal alcohol spectrum disorder. The work that we are doing with the Canadian Academy of Health Sciences is looking at that question.
If we look at the 2003 framework we had on FASD and what has changed, science and knowledge has continued to evolve since that time. One of those areas is in the understanding that there are a broader number of factors that influence FASD. That is definitely something that we will be looking at recognizing that you can’t look at prenatal alcohol consumption on its own. You have to look at the conditions of poverty, the situation of the family, broader societal norms around alcohol consumption, which I believe were referenced earlier in this hearing. That’s definitely something we will be taking into account as we are moving forward.
Senator Cormier: It seems that the action plan — I don’t know how you say it in 2003 — there were loopholes? Did you take all that into consideration? Because the feeling I have is that plan did work but not that well. Is it the reason why it didn’t work?
[Translation]
Ms. Scott: Thank you for the question, Senator Cormier.
[English]
The framework in 2003 was aspirational. It was designed following extensive national consultations and it was aspirational. It didn’t have specific responsibilities attached to it. It didn’t identify a specific action plan, but what it did do was set a foundation that did actually influence change. We did have some provinces and territories that did move forward to implement FASD action plans or strategies if we look at Manitoba, Alberta, British Columbia and the territories.
We did also move forward with specific project-based investments to develop guidelines. And we did have CanFASD, a key stakeholder, develop Canadian guidelines for FASD diagnosis and assessment. Those guidelines were also updated in 2016.
We worked with The Society of Obstetricians and Gynaecologists to develop guidance for medical professionals for screening. We funded specific tools and resources for at-risk communities. We worked with Indigenous partners like Pauktuutit to do work. So since 2003, there have been a number of investments that have aligned with the 2003 framework.
What we are seeing now, going forward, there is time for more accountability measures. I think there was a reference earlier to an evaluation of our investments in fetal alcohol spectrum disorder which did talk about the need for performance measures, indicators and benchmarks and also talked about the need for strengthened surveillance as well as better intergovernmental and interdepartmental coordination. So things are evolving. Definitely there is more we can do, but I think we are on the right path, if I can say that.
Senator Cormier: Thank you.
Senator Brazeau: Good afternoon to all of you. Obviously, today we’re talking about FASD. Could you talk about what role you individually do to raise awareness and education on the negative impacts of alcohol writ large? That’s my first question.
My second question is, when we are developing frameworks, we could come up with the best framework that we can, but it will be up to the minister or the current or the next government to act upon it or not.
In that vein, what do you think needs to be included perhaps in the bill to give it more teeth so that elected politicians in this country start taking alcohol seriously?
Ms. Sterniczuk: Thank you for your question, senator. You asked about what each of us are doing related to the kinds of harms and education writ large related to alcohol.
For Health Canada, our work on alcohol is really guided by the Canadian drugs and substances strategy. This strategy was first announced in 2016. It is an all-substances strategy that provides a framework for a whole-of-government approach to the study of substance use and substance use policy. It is supported by 15 federal government departments.
The reason it is an all-substance strategy is because it recognizes the complexity of substance use. The reality is that a lot of people do not use any one substance alone.
It does focus on a number of pillars. Prevention and education is a key pillar of the strategy. There are a number of activities that are funded through the strategy through a sister program, if you will, called the Substance Use and Addictions Program. Really the goal here is to fund activities that increase awareness and knowledge about the effects and risk of substance use and about how we can prevent, reduce and delay substance use harms.
It also includes activities around reducing stigma. So a lot of funding is provided to different organizations and research institutions to create prevention and education programming. That’s a key way in which we support that through Health Canada’s work.
Mr. Collins: I will jump in and then I think my colleague Jennifer Novak will supplement.
On the latter part of the question which is around what might be missing, I’m not sure it is necessarily a case of what is missing. From our vantage point at Public Health Agency of Canada, what we like about what we read and where we want to go further relates to improving data collection, surveillance and facts so that, going back to the previous question, just realizing how prevalent this may or may not be. It is not just one segment of society, the population, that could be put into a corner. Actually, this is a bit more prevalent than we may want to understand in mainstream society.
There is work that is taking place at this point in time. But I would think that there is an opportunity underneath what has been proposed here to sort of amplify and double down a little bit in terms of what can be done in this particular space. And I say that partly in a convenient fashion because, again, the federal government holds a few more levers in that particular space and is somewhat less reliant upon provincial and territorial.
The only other editorial comment — and now I am riffing a little bit here — based on our experience with other frameworks and action plans that we’ve done at the Public Health Agency of Canada, from a methodological perspective, we do need to align some provinces and territories to be champions in this space as well. We can’t come in and say that this is our priority and expect a 180-degree turn by the Province of Manitoba.
There needs to be more leg work building on what we have to date to put that into place methodologically. Ms. Novak, over to you.
Ms. Novak: At the end of the day, especially for Indigenous Services Canada, we are looking to do the transfer to communities for the delivery of their own services.
Fundamentally, we have worked with partners, First Nations specifically, to advance the First Nations Mental Wellness Continuum Framework. That is really there to bring a look and a reflection to a balance of mental, physical, spiritual and emotional health. We want to see people that see a balance and enrich people’s lives to have purpose in their daily lives, to have hope for the future, to have belonging and connectedness with families and communities and culture and truly a sense of meaning in their lives. If that’s your fundamental piece, all of the work that moves forward, whether for FASD or mental wellness or just wellness more broadly through your continuum of care, it has to be anchored in those elements and a truly culturally grounded piece as well.
For us, there is training, obviously, for our staff that ensures that they are trauma informed and culturally relevant. It is about allowing our partners to really truly live and breathe what wellness means to them.
When you are looking at how to improve the bill, to your point, I would try to use those elements that our First Nations partners have given us as the foundational elements of hope, meaning, belonging and purpose for how we see that across the continuum of care.
The Chair: Colleagues, you have noted how generous I am being with time.
Senator Petitclerc: Thank you all for being here. My question will be for you, Ms. Novak.
I found it very interesting how you positioned the situation for Indigenous populations and mothers-to-be, and it is very complex. I am thinking about prevention because it is so essential with everything that is related to health. In this case, my colleague talked about awareness, so I am thinking that awareness is crucial and the framework has a potential to be also very important.
When I hear you, my question is: When there is a core fear of stigma — which we see everywhere — when it comes to Indigenous mothers and mothers-to-be and new mothers, on top of the fear of stigma is a legitimate fear of a child being taken away. Unless you build that safe space and trust, how do you make awareness work and how do you make the legislation work? How do you build that safe space? That is my difficult question.
Ms. Novak: It is a great question. It is an important question. I noted in my remarks the tragic events around Joyce Echaquan, and that triggered investment to address anti-Indigenous racism in our health care system. Coming from that, we have invested in Indigenous midwifery, within the community so that you don’t have to emergency medevac women out of communities to deliver babies. That midwifery follows the mother, is in the community and is able to have a better connection with the mother and build that trust that you are talking about in order to have informed conversations about prevention and about promotion.
If women in communities have to be removed from communities in order to go through their pregnancy or to go through the delivery, you are removing that trust and that build. How do we support communities in their self-determination but also in their self-reliance and infrastructure within the community? That, I believe, with midwives in communities, they are part of that continuum of care, and that can connect into early childhood development as well, and then further on into your education system.
The solution can never be to remove people from the community or remove children from the community. It is why we are looking, through our child welfare services, to put that back into the community and allowing communities to look at how and in what way they want to support their children.
Senator Petitclerc: How do we quantify the amount of work that still needs to be done in terms of educating the medical sector? Especially the quantifying part.
Ms. Novak: I think that if I had the answer to that I would get a Nobel Prize or something. Quantifying is important. I think it is about meaningful engagement. You all talked about in the earlier hour how we need to have better engagement with partners earlier on. If you are going to advance a framework or a strategy to get by, it requires time, it requires trust and it requires honest conversations with Indigenous partners across the country in order to get buy-in. You can then also build in your data and your data sovereignty, but it is important to keep that data sovereignty with Indigenous partners and not necessarily be disassociated across the country. You have to build the trust in the engagement first before you’ll be able to get those real numbers down the line.
Senator Muggli: Thank you. That is very enlightening regarding the midwifery program. I really believe that is an incredible approach to prevention. One day, hopefully the prevention will be enough that we won’t have these very intense interventions required.
My question is around whether the Canadian Academy of Health Sciences is including anything around targeted training around the diagnosis of FASD. I know guidelines are really good, but how we attain the specialized training that’s required at that stage of diagnosis and if there is a role to play. I know provinces are responsible for post-secondary education, but this is a national interest and a national crisis, I would say, where maybe there is a leadership opportunity to sponsor or lead training in this area.
Ms. Scott: Thank you for the question. The Canadian Academy of Health Sciences is looking at diagnoses. There is a chapter on screening and diagnosis in the report that they are working on. They realized, I think, that the challenge on diagnosis is that there are a lot of different things in terms of the diagnosis of FASD and there are different standards that are used internationally and even within the DSM-5, which is the diagnostic manual, which does not actually include a subset related to FASD. That has been another question put out there. You have a subset for autism but not one for FASD. Does that affect the diagnosis? Because of the challenges on the standards for diagnosis, it affects the billing in terms of medical professionals being able to bill for undertaking the diagnosis. It also creates a further challenge there.
With FASD, I think one of the issues of having to prove prenatal alcohol exposure, as opposed to other neurodevelopmental disorders, this one requires proof. Unless there is a visual cue through a sentinel facial features or other point, how do you get that information to confirm that prenatal alcohol exposure? That gets to the stigma and a lot of those issues around it. There is a lot of work that the Canadian Academy of Health Sciences is doing trying to unpack some of those issues and figure out a way forward. Finding more of a harmonized approach to the diagnosis and how they clinically diagnose that will be key and working across health professionals and provinces and territories to come to that. I hope that responds to the question.
Senator Muggli: Good. Thank you.
My other question was for Ms. Sterniczuk regarding the Substance Use and Addictions Program. I have had the opportunity to fill out those applications. Just a little suggestion: They could be shorter.
Have any awards of funding targeted FASD as a theme, in particular responding to Call to Action 24?
Ms. Sterniczuk: I would have to get back to you specifically on the FASD and whether any of the funding has gone to specific FASD projects.
I know there is funding that goes to alcohol projects or all substance projects, but I can’t, unfortunately, speak to the FASD component.
Senator Muggli: It would be good to receive that. It might help as we deliberate.
As another comment, I understand the importance of multi-substance use. I worked in mental health and addictions for a long time, but I will also offer that there is a differing social acceptance with alcohol. So there is some importance to be able to address that in the context of FASD. Thanks.
The Chair: I would like to ask a question or raise an issue. So as a neonatologist and pediatrician, it’s been my work to do that early diagnosis based on facial features or other stigmata. Even the words “stigma” and “stigmata” are the issue here. But as we move forward, we work in a fractured health care system, and the transition from youth to adulthood with multiple complex layered care that must often happen for these kids — because they can be birth defects with cardiac defects all the way to neurodevelopmental issues. If we think about that transition and the potential loss of care, because care is driven and money is accessed through a diagnosis — if we think about that, how will this framework help in smoothing out some of those transitions and potentially ensuring that, as we move away from the diagnosis approach to access to care, we access care. How do we ensure that care is accessed? Will this framework help? Tough questions.
Ms. Novak: We’re doing the dance to figure out who goes first. It is a great question.
The Minister of Mental Health and Addictions, Ya’ara Saks, just announced last week a youth mental health fund, and when Indigenous Services Canada was looking at what a “youth” is, we turned to our partners. Their definition went from 12 to 30. The reason for Indigenous Services Canada to adopt that number, 12 to 30, is exactly for the reason you note: There is not a soft hand-off, necessarily, that goes from 0 to 18 and then to the adult system.
So when looking at the transfer — and not everything has to stop at 18 — and look at youth on a full spectrum, especially when you are looking at cognitive development up until 25, depending upon whom you ask. That is a really important piece. It is how we choose to define “youth.” These terms really matter in how you advance them and represent them.
That handover is also another piece as to why there are a lot of investments in integrated youth services. Again, it is looking at a person as a whole and not a condition or a diagnosis in that way and considering what is needed. Do you need health services, educational services or social services? It is looking at that person in a full way. It is not saying that this is the wrong door; go to the other door.
Integrated youth services across the country or in communities are there to connect you to the right services in the right way and have a broader understanding of that landscape to help people navigate those very complex systems because they are at the regional level, but they also are at the provincial and federal levels too.
The Chair: Thank you. Excellent answer.
Senator Burey: I want to figure out the level of support you have for the bill. I’m trying to read between the lines of what different people have said and the potential for what this bill could do.
I heard about the data collection on a national level — that could be a potential that a bill like this could expand. But I also heard the nuances with regard to having a specific diagnosis and not wanting to be further stigmatized by having this under a FASD clinic or something like that.
So the question is: Are you in support of the bill? Second, what do you think, apart from the data — or you could expand on that in terms of improving and gathering that — and then are there any things that could improve the bill in terms of, say, the nuances with not wanting to be diagnosed with a FASD and just having a continuum of prenatal, maternal and early childhood health care and that sort of thing to improve the bill?
Mr. Collins: Maybe I’ll kick it off, and then turn to others for additional perspectives. That’s the million-dollar question, isn’t it? You have kind of left the best for last.
You won’t be surprised, given where the bill is heading but also the collective work taking place across Health Canada, Indigenous Services Canada and within the Public Health Agency of Canada, that there is symmetry here. This is not coming out of left field, and there are things for us to leverage.
Of course, this hasn’t been discussed with ministers. There is no government position on this. I just have to be clear about that.
At this stage of the game, our analysis on what is being put forward — I don’t want to overplay it in terms of how far we have gone with that. Certainly, though, when you look at some of the tenets of the bill in and around creating awareness and some of the efforts that have been pushed on that particular front, they make sense. We can see ourselves in that. We can see some of the work we have done and the risks of alcohol consumption. That would be an area where we would be interested, and we can see ourselves in it.
In my opening remarks, I think I made reference to tools and resources. That is an awful lot of what we have been attempting to do without a really formalized framework and catalytic element in place. As you often see in the federal sphere, it has sometimes been randomized little investments. Tools and resources for practitioners around education would, again, be another piece where there would be some interest.
Promoting research. We have made reference to the Canadian Academy of Health Sciences and the report that is inbound on that particular front. Intergovernmental information sharing, another component of the bill, is being put forward — absolutely on the surveillance, data gathering and drilling down on that particular front. Those are other elements.
The only areas where we might be, at this early juncture, somewhat hesitant to give a full-on endorsement for would be in the areas where we see complexity. That goes back to what I made reference to earlier about interjurisdictional spaces. The more you get into diagnoses, at least from a public health perspective, is where you are straying a bit from the core lane; it’s getting a bit ultra vires in terms of where it is.
We just need to be cognizant of that as we are moving forward. When you make reference to national standards, I think that’s also where we just need to be cognizant that as the bill is currently formulated, who is playing what and what levers do we have to sort of formalize, catalyze and put those national standards into place?
I will provide one final, purely editorial remark. My apologies, but I’m obligated to say this. This is not so much on the content, but it is a knee-jerk public service reaction here: Because of the complexity, when I see the reporting obligation to Parliament within a one-year period, I would always say that if we are going to do this, we need to really do it right. So just reflect upon the time period by which you are providing an obligation onto the machinery of government to respond. Let’s make sure we do get this right.
Senator Burey: I think Ms. Novak —
The Chair: We have run out of time for this question. Another senator hasn’t asked a question, so I would like to give her an opportunity to have the final question.
Senator Senior: Sorry about that, Senator Burey. I don’t know if I can work it in.
I was curious. On another committee, we are looking at kids who age out of care, and I’m hearing what you are saying with respect to a much more holistic approach in terms of how we work with youth, in particular, from diagnosis to treatment, let’s say.
Because all of the institutions that touch people’s lives, and I’m thinking specifically about youth who age in and out of care, I wonder whether there would be something missed in an approach that is holistic when it comes to FASD in particular and thus treatment or supports or what have you.
Ms. Novak: It is a great question. When we look at health supports, obviously, my title literally says “mental wellness and health promotion,” so I am kind of biased with that issue. An ounce of prevention is worth a pound of cure.
It was said earlier, the squeaky wheel gets the oil, and we tend to invest quite a bit in crisis responses because it has happened, so now we need to deal with it. The money goes there, and we don’t do a lot of the upfront work. Issues begin to compound after that.
To your point about aging out of care, if someone has had supports from 0 to 18, they will have the tools and resiliency to continue to move on and get the continued connection to a health care system or social services in some cases if they exist. But if someone has been left kind of floundering for the first 18 years of their life, it is very hard to catch someone once they have aged out of a broader system of care. When we look at primary care as well, where we have lots of people without family physicians and access to specialties is kind of guardrailed for many, taking that holistic look at someone from a full-lifespan perspective is going to be really important, but we have to look at our systems.
We were talking about correctional services earlier. We have these different points in time for some individuals where we can support them. If someone is in a correctional service, you can provide a system of care there because it is a very controlled environment and you can’t go anywhere. We were talking earlier about homelessness and broader health issues. It gets really hard to connect people to a system of care later in life. Emphasis on that prevention and on that earlier intervention from 0 to 18 really reaps dividends once they do age out of care to keep them in those broader systems. It is not a perfect way, but it is better than what we currently have.
Ms. Scott: There is the debate of the medical model of assessment versus the social model. That is very topical, and there are advantages to having that medical diagnosis in terms of tax benefits. If we look at a lot of the things that are offered through Employment and Social Development Canada, or ESDC, and Canada Revenue Agency, or CRA, in terms of the Canada Disability Benefit, a lot of that is based on having a medical diagnosis. For certain families and for children definitely, having that gives them access to different services and supports, and there are linkages to the education system as well. At the same time in that medical model, there are issues around stigma and, again, failure to be able to get a diagnosis. If you are living in remote locations, you don’t have access to the same FASD clinics that are mostly located in urban areas, so there is an idea that we should be moving to more of a social model.
That being said, the holistic approach and what they are seeing is that trying to bring people, as my colleague Ms. Novak mentioned, into a community-based setting where you can build the trust and relationships and provide services and supports across a lifespan for neurodiverse individuals, broadening it beyond FASD specifically to touch on more of the neurodiverse conditions, will relieve some of the pressure around stigma and help people carry on through that continuum of care and through those childhood to youth to adulthood transitions.
It means you have someone identified as a case worker to work with an individual and system navigators to help these folks as they continue on. So there are some advantages to the holistic model with that life-course approach, but there is that need to recognize the medical model versus the social model. Both models have their pros and cons depending on where you sit on the spectrum.
The Chair: Thank you.
Senators, this brings us to the end of this panel. I would like to thank all the witnesses for this interesting testimony today. There being no further business, this meeting is now adjourned.
(The committee adjourned.)