THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, October 1, 2026
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 10:28 a.m. [ET] to examine Bill S-234, An Act respecting a national framework for fetal alcohol spectrum disorder.
Senator Rosemary Moodie (Chair) in the chair.
[English]
The Chair: My name is Rosemary Moodie. I’m a senator from Ontario, and I chair this committee.
Before we begin, we will have senators introduce themselves.
Senator Burey: Welcome. Sharon Burey, Ontario.
[Translation]
Senator Boudreau: Good morning. Victor Boudreau from New Brunswick.
Senator Arnold: Good morning. Dawn Arnold, also from New Brunswick.
[English]
Senator Anderson: Hello. Dawn Anderson, Northwest Territories.
[Translation]
Senator Petitclerc: Good morning. Chantal Petitclerc from Quebec.
[English]
Senator Osler: Flordeliz (Gigi) Osler, Manitoba.
Senator Cuzner: Rodger Cuzner, Nova Scotia.
Senator Muggli: Tracy Muggli, Saskatchewan, Treaty 6 territory.
The Chair: Today, we begin our consideration of Bill S-234, an Act respecting a national framework for fetal alcohol spectrum disorder.
For our first panel, we welcome, from the Public Health Agency of Canada, Michael Collins, Vice-President, Health Promotion and Chronic Disease Prevention Branch; and Tammy Bell, Director General, Centre for Healthy Living, Health Promotion and Chronic Disease Prevention Branch. From Indigenous Services Canada, we welcome Jennifer Novak, Director General, Community Wellbeing Branch, Health and Social Sector.
Thank you for joining us today.
It’s my understanding, Mr. Collins, you have the only opening statement today. You have the floor for five minutes, and then we will move to questions from our committee members. The floor is yours.
Michael Collins, Vice-President, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada: Thank you, chair and members of the committee, for the invitation to appear today. The Public Health Agency of Canada is affectionately known as PHAC.
Before we start, and very importantly, I would like to acknowledge that we are joining you today from the unceded and traditional territory of the Algonquin Anishinaabe People.
As we are all well aware, fetal alcohol spectrum disorder, known as 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.
I last appeared before this committee in November 2024, about two years ago, to discuss the former bill, Bill S-253, An Act respecting a national framework for fetal alcohol spectrum disorder. At that time, I explained PHAC’s role and priorities as they relate to FASD, which fundamentally remain unchanged.
[Translation]
As part of PHAC’s role in promoting health, supporting healthy pregnancies and preventing alcohol-related harms — including fetal alcohol spectrum disorder — these remain priorities for the agency. We continue to work with partners and stakeholders across the federal government and beyond to address the full spectrum of fetal alcohol spectrum disorder and its impacts.
[English]
PHAC has contributed to addressing FASD primarily through activities related to prevention, data and knowledge development. This includes such things as investing in community-based programming and awareness-raising projects, which promote protective factors, prevent substance use in pregnancy and minimize harms from substance use for individuals, families and communities.
Second, we focus on leading surveillance activities with respect to maternal and child health issues, including prenatal alcohol consumption and neurodevelopmental disorders such as FASD.
In addition, the agency has been able to collaborate with many partners and key stakeholders across Canada through a variety of knowledge-development and community-based funding initiatives. In thinking about funding, this includes recent funding provided to the Canadian Academy of Health Sciences, specifically from 2023 to 2025, to conduct a comprehensive scientific assessment of FASD. This assessment included a review of relevant FASD data, literature, policies, programs and engagement with partners to identify not only challenges but also opportunities to strengthen Canada’s approach to addressing FASD.
Lastly, the federal government has begun discussions with provinces and territories to renew the Working Together bilateral funding agreements. These agreements, initially signed in 2023, will provide the remaining seven years of federal funding to provinces and territories, providing support to address the unique health needs of their respective populations and geography.
These agreements continue to provide provinces and territories with the flexibility and funding to support improvements on their health priorities, including an array of issues touching on substance use.
[Translation]
Since my last appearance before this committee, the report by the Canadian Academy of Health Sciences, or CAHS, was published. This report is an independent study conducted by experts that highlights many of the complex issues, challenges and wide diversity of approaches aimed at addressing fetal alcohol spectrum disorder and its impacts.
[English]
The report highlights several key considerations that may be useful for this committee’s study of Bill S-234. This includes the importance of meaningful engagement with Indigenous communities and co-led approaches, as well as the reflections from the development of the implementation of the FASD Framework for Action, developed back in 2003.
The 2003 framework presented a vision for how jurisdictions could work together to address FASD and led to the development of key tools, such as the Canadian FASD diagnostic guidelines and an expansion of overall public awareness. However, despite the work that has been accomplished to date, several, if not multiple, key challenges remain today. This includes the jurisdictional complexity of addressing issues across multiple levels of government and multiple sectors.
As a Canadian, I feel that’s almost a mandatory statement to be made in any policy file, so I am not sure how unique it is to FASD.
Regardless, these challenges highlight the importance of ensuring that the proposed language in Bill S-234 regarding the national framework aligns with the areas of federal jurisdiction and would provide sufficient time to meaningfully engage with all partners.
The report has made it clear that addressing FASD is complex and must include a collaborative approach across jurisdictions as well as different sectors of society.
While PHAC’s role primarily lies in the promotion of healthy pregnancies and prevention of FASD, we truly recognize the value of the report’s broad-based findings. It provides an important evidence base that can continue to inform policy discussions and assist all partners in this space as we move forward.
So with that, on behalf of the three of us, thank you for your time today. We are pleased to engage in conversation and attempt to respond to your questions. Thank you.
The Chair: Thank you, Mr. Collins.
Before we move on, I welcome into our midst a new senator, Senator Ouellette. Welcome to the Social Affairs Committee. It is a pleasure to have you sitting in our midst.
We now proceed with questions from committee members. For this panel, senators have four minutes each for questions, and that includes the answers.
Senator Burey: Welcome. Thank you so much for being here today.
Mr. Collins, I was reviewing your testimony from 2024. I was here at the time. In any event, I looked at the report, which you commissioned from the Canadian Academy of Health Sciences and that was released in 2025. It struck me that one of the main things they talked about was going back to the 2003 framework, that the vision was great and things were done, but the implementation seemed to be one of the major problems.
Can you speak to that a little more directly and, as you noted in your opening statement, the role that the federal government could play in that?
Mr. Collins: Thanks for that. I was fairly confident that someone on the committee would go back to 2024 or 2025. I did, too, to make sure I was didn’t contradict myself from two years ago.
Thanks for the question raising the importance of the 2003 framework.
The Chair: Your microphone was not on. Do we need to ask Mr. Collins to start again? Did people hear him? Okay, great. Please proceed.
Mr. Collins: Thankfully, I have fairly decent projection, so I am not 100% relying on the microphone.
Reflecting on the importance of the 2003 framework, I’m glad that the Canadian Academy of Health Sciences obviously used that as a linchpin. Again, there was recognition that some important steps were taken in establishing the framework. However, it didn’t really drive home the sense of accountability that needs to be put into the system.
In that respect, we have an absence of performance indicators or a baseline against which we could assess our progress. When we were here last time, the language we used three, four or five times during the testimony was that the framework was “aspirational” and a good departure point.
However, if we’re going to move forward, we need to move to a state where it’s not just a select number of jurisdictions at the provincial or territorial level that have decided to put into place action plans because that’s, one might argue, not an appropriate service for all Canadians. It is sort of an asymmetrical patchwork.
The other piece that’s always the elephant in the room around these types of discussions is resources. Again, at a federal level, the FASD, as I mentioned, is a priority within the Public Health Agency. However, it competes for resources with other programs. The amount of money we have to actually invest in community-based programming has been restrained or limited. Our ability to drive this in that respect is also constrained.
We need to move to more performance measures, greater consistency across jurisdictions and also resourcing.
Senator Hay: My question is for Ms. Novak.
In 2024, you called data sovereignty non-negotiable, with which I fully agree, and noted communities are moving away from FASD labels because of stigma.
An Indigenous-led national framework is now under way with CanFASD, I think, with the University of Alberta and community partners. My worry regarding two frameworks built side by side is this: What if they never meet? There is, to me, massive potential for gaps, silos and fracturing. Could you comment on that?
Jennifer Novak, Director General, Community Wellbeing Branch, Health and Social Sector, Indigenous Services Canada: Michael was talking about resourcing. I would like to tie both things in. When you think about stigma, the comment I made is that there is a large reluctance to speak about alcohol use during pregnancies for fear that may lead to interventions from child and family services.
We know that First Nation and Inuit children represent 50% of children in care. When you compare that to the full population, it’s about 7%. There absolutely remains a huge stigma because the link to FASD still includes blaming the mother and her actions that would have led to the condition.
When you look at some of the services, communities want to work more with midwifery and maternal child health, look more at the social determinants of health more broadly and not necessarily get pinned down on a diagnosis.
Sometimes at community levels, there is, frankly, a lack of diagnostic abilities. Speaking about neurodevelopment more broadly opens up more tools in the toolkit and allows communities to have more flexibility in aggregating some of their funding, so aggregating education funding, aggregating child and family services funding, Jordan’s Principle funding and, under my umbrella, assisted living funding, income assistance funding and mental health and substance use funding.
When you look at a framework that is unique to one medical condition, one diagnostic, it becomes challenging — to the point from the senators — in the implementation because you narrow the focus and funding to a specific area that doesn’t allow for much flexibility in the implementation afterward, where communities are looking for that kind of self-determination to take a broader lens and look at all the tools that are needed for those children.
Senator Osler: Thank you to all the witnesses for being here today.
Mr. Collins, in your opening statement, you talked about how, referring to health care in general, the federal, provincial and territorial jurisdictional challenges should be a standard statement whenever we talk about health care. In your further comments, you talked about the asymmetrical patchwork. I suggest you insert that again as a standard opening line when you talk about health care.
My province, Manitoba, already has a provincial FASD strategy and a province-wide diagnostic network that has a partnership with Indigenous communities.
How could the federal government use the national framework proposed in Bill S-234 to support and strengthen systems that are already in place and working at the provincial level so as to avoid creating parallel structures?
Mr. Collins: Thank you for that question; it is always a delight to receive a question from my home province as well, not to be overly biased, but we’ll expand the language into other policy statements.
It’s interesting when we talk about frameworks and strategies. You can get a little cynical about them because you might say that the landscape becomes littered with them.
However, from a federal government perspective, one of the tools we’re able to use is to leverage — and it’s remarkable how this doesn’t take place — some of the best and most effective practices that take place not just at a provincial level but at a community level. These can be brought up and distilled such that they actually become an extrapolation of lessons learned and best practices across the country.
What I’m saying, when I’m listening to myself, sounds so utterly basic, but at the same time it is very elusive. You see that with diabetes, autism and national suicide prevention pieces.
Often, the role of the federal government in leveraging these types of national or federal frameworks — whatever you want to call them — is that ability to convene, harvest and drill down on these questions: What are the training tools? What are the modules that we should be leveraging to ensure it’s actually a coast-to-coast-to-coast application? That’s one of the benefits of these types of initiatives.
Senator Senior: Welcome. Ms. Novak, I want to follow up from where Senator Hay may have left off; it’s with regard to what you mentioned about the stigma that communities, particularly mothers, experience and whether FASD is recognized as a disability consistently across Canada. Can you explain why this is or is not the case?
Ms. Novak: Yes.
Senator Senior: I don’t know whether you would answer both of these questions, but does the Canada Revenue Agency, or CRA, recognize FASD as a disability for the Canada Disability Benefit?
Ms. Novak: Yes. Absolutely, there is a difference. When we look at the statistics, the representation of FASD in some research has come in well below national standards. That is because of a lack of diagnostics, but it is also about a lack of reporting and being unable to speak more freely about alcohol use during pregnancy for fear of other repercussions.
I don’t think there is necessarily a difference within First Nation or Inuit communities versus the general population. But when you don’t have the data or research, it’s really hard to implement specific programs for them.
When we look at the stigma as well, one of the pieces that becomes quite challenging is our programs allow for the recognition and matching of what provinces and territories do when we look at our disability benefits as well.
Depending on the provincial recognition, if we look at our assisted living, home and community care programming, there is, for lack of a better word, a gamification that ends up happening when you look at what the proportions are and what each province or territory compensates on the disability side because the federal government and First Nations communities mirror what that province does.
You end up with a pushback and an alignment through our Jordan’s Principle program. When we look at some of our statistics, last year, we had over 800 requests just for FASD alone in Jordan’s Principle.
A little over 300 of those requests were approved, and support was provided under Jordan’s Principle. But that shows a lack of access through provincial programs or even through some of our national programs — those I’m actually responsible for — in enabling communities to be able to be self-sufficient and provide for those supports.
So that Jordan’s Principle piece becomes the safeguard for people who may not be able to access it through other mechanisms that would have layers of stigma and discrimination within them.
Senator Senior: Does that mean that, for those cases, the CRA does recognize?
Ms. Novak: Yes.
[Translation]
Senator Petitclerc: Thank you, senator, for asking exactly the question I wanted to ask. Also, thank you for the very comprehensive answer. I would just like to ask you to elaborate on that point, in the sense that — and this is my understanding as well — some provinces don’t recognize FASD as a disability. As you said so well, it creates challenges and barriers to accessing services and care. So, to finish up, could we say that that this bill would provide a boost toward having FASD recognized more broadly as a disability, thereby facilitating access to these services and care? Is it fair to say that this framework program could have that effect?
Ms. Novak: I think it will come down to the details, to the implementation. When you look at the nurses or doctors who come to the community for a day or two a month, they don’t get to know the community, the mothers, the families. So, when it comes to implementation, yes, if it’s recognized, that’s great, they have a code they can enter into a system; it’s easy. However, there is no automatic care provided by the child’s doctor, the mother, the family, the community and all the needs that come with that. There is no follow-up. They have their diagnosis, but after that, it’s up to the mother and the community to take all the steps to try to help that child access services. It isn’t enough to simply check a box and say that, yes, this condition must be recognized. We need to look at the next steps, that is, how a diagnosis can help the child access the services that come with it.
Senator Petitclerc: I’m trying to understand. I know this happens in other situations as well. Am I correct in understanding that, for example, a diagnosis of FASD does not necessarily mean a person is recognized as having a disability?
Ms. Novak: Exactly.
Senator Petitclerc: At the federal level?
Ms. Novak: At the federal level. I’m responsible for the program that supports people who need access to services, whether at home or elsewhere. They still have to apply, though.
Senator Petitclerc: Yes.
Ms. Novak: So the family has to try to get all the medical documents, all the things to be able to document the case, to say, “We now need these services at home.” There are all these additional steps that come with that. The doctor doesn’t take those steps, doesn’t provide access to social services.
Senator Petitclerc: So we’re talking about barriers to access?
Ms. Novak: Yes.
Senator Petitclerc: Thank you.
Mr. Collins: As for the question asked, whether the bill can do this or that, I think we have to be careful about barriers because, again, we’re talking about an area of provincial jurisdiction.
[English]
Senator Muggli: Thank you for being here today. I appreciate the complexity; it’s justice, social services, health, education, many of which are provincial, though some are federal. I certainly appreciate that as someone who was, at one time, responsible for diagnostic services. It’s not easy to recruit or train people who can make a diagnosis. Wait-lists are long. There are all those challenges.
My question, Ms. Novak, is this: How might this framework help us to address Calls to Action 33 and 34? Maybe that’s where we get into performance indicators; I don’t know. What are the performance indicators that will help us know when we have moved on Calls to Action 33 and 34?
Ms. Novak: Absolutely. This is timely, given yesterday.
At the end of the day, we’ll always be evaluated on outcomes and results, and being able to be clear and precise in that language is critical.
When we look at, for example, the health and social programs I’m responsible for, we want to ensure we have services that are available and accessible. It’s not just having a program that exists. If it’s 300 kilometres away from a community, and it’s a fly-in community, it’s not considered easy and accessible.
We want to look at the quality. Are the services being provided by those who have the right qualifications to perform the assessment?
The last piece is the effectiveness. Were there services available for the individual at the time they needed it and in the format that they needed it? That ends up being forgotten in surveys, because it’s hard to be precise in those results and outcomes.
We concentrate a lot on availability and accessibility because those are numbers and metrics that we can count easily. However, when you go down to the individual level, not just looking at the services, that feedback loop has to be there in your results and outcomes so that the individual will be able to say those services were there, they were provided in a timely manner and they were easy to access, as well as that they felt supported and like individuals were able to provide services in a trauma-informed, culturally relevant way for them.
That precision on the back end regarding the effectiveness of those services is really important. But we limit ourselves a lot when we try to do these national programs to availability and accessibility. Well, it’s there. Yes, but was it enough?
Senator Muggli: Do you think this strategy can help us move the needle?
Ms. Novak: If you add that additional precision on that feedback loop for outcomes at the individual level, yes.
[Translation]
Senator Boudreau: My question is a follow-up to my colleague’s. Several of my questions have also been asked. This is a very interesting topic.
I’m trying to understand a distinction. We have been told that a national framework has existed since 2003, but currently there’s a bill to create a national framework. I assume that the first framework, which was put in place in 2003, was an agency initiative but not legislated, whereas now it would become law. So I get the impression that it would have greater legal force. What gaps should we address in a new national framework, backed by legislation, compared to the framework established in 2003 and in use since then? What are the nuances and gaps that we’re trying to correct with this new effort?
Mr. Collins: That’s a good question.
I referred to CAHS, which had highlighted certain weaknesses in the 2003 framework. I mentioned the importance of having clear indicators and objectives, as well as adequate funding to support the effort. I also mentioned monitoring. Within the agency, we do a lot of monitoring to gather data, but we have our limitations. There is no national monitoring framework to provide a clear understanding of the scope of this challenge. When I look at the details, there are key points, and there is potential. The risk is that it can be yet another case of good intentions without funding. As I mentioned in 2024, we are coming in with a priority for the federal government; we’re knocking on Saskatchewan’s door, saying that we have an initiative in this area, but it isn’t necessarily a priority for another province. That’s why we’ll need to hold numerous consultations to lay the groundwork and ensure that this can work. Those are some of the reasons we are looking at the details of this initiative. Senator Ravalia indicated that it would be desirable to have a report in 18 months. For our part, as usual, we would like a little more time. The consultations must be thorough and far‑reaching.
Senator Boudreau: Thank you.
Senator Arnold: That was exactly my question.
[English]
Initially, it said one year, and your recommendation in your testimony last time was to move it to 18 months. There is a sense that this needs to be done. Are you okay with the 18 months now? Of course you want years, but is it doable to achieve what you think needs to be done here?
Mr. Collins: I won’t speak for the entire witness group, but on behalf of the Public Health Agency — so I’m going to get tripped up on my testimony of two years ago. I knew this was inevitable. But if I were providing feedback to our minister on this bill, I would way to do this and to do this right.
I agree with you on the urgency, again, just given the scope, the scale, the heterogenous nature of the stakeholders involved and the fact that a significant proportion of what is proposed here flows away from unique federal jurisdiction. As such, we would be asking for more. It’s not like a deathbed conversion, but 18 months sounded good last time, and now as I rethink this and even just listening to Jen Novak on the Indigenous side — and we all know that, again, as I said before, when we arrived before a stakeholder, where this is on the competing priority scale, can vary. Certainly, on the Indigenous side, we all know there are limitations in terms of capacity on the engagement piece.
So I won’t give you a figure necessarily, but I would be arguing for more than 18 months at this stage. That is not to say we are looking to be slow, but rather to do it right.
Ms. Novak: In the Indigenous context, we would want to make sure that we were taking a distinctions-based approach to our consultation, so that doesn’t even limit it to First Nations. It’s also looking at those treaty rights holders and those we work with through self-governing agreements.
You end up having a large group that you can’t just aggregate into one room and say, “Let’s hunker down and do this together.” There are realities that are very different across the country. If I’m talking with First Nation communities in Cape Breton, it will be very different than with those in northern Alberta, even though you would say they’re both First Nations. We’re looking at 657 different First Nations across the country. Some will have very different considerations in how they want to implement the framework, how to aggregate their supports and how they link their child and family services, their education programming and their health and social programming together. So there are these broader considerations, especially with engagement, that you want to be meaningful.
So saying that two or three First Nation individuals in a room can speak for 657 nations is challenging.
Senator Anderson: Thank you for being here. My question is for Ms. Novak, and I think your last question is a segue into mine.
Subclause 2(3) includes:
For the purpose of developing the national framework, the Minister must consult with . . . .
(d) Indigenous communities and organizations with predominantly Indigenous leadership . . .
I am concerned about the distinction between Indigenous-led organizations and Indigenous governments representing constitutionally recognized rights holders. So, as currently framed, the consultation provision could permit organizations that self-identify as Indigenous-led to participate without clearly establishing their authority to represent the Indigenous Peoples affected by this legislation.
From ISC’s perspective, what safeguards should be included to ensure that consultation with Indigenous organizations is not treated as a substitute for direct engagement with Indigenous governments, modern treaty holders and section 35 rights holders?
Ms. Novak: Absolutely. I wouldn’t want to speak for my colleagues from Crown-Indigenous Relations. We work very closely with them for those that have modern treaty or self‑governing agreements as well — which is a different minister. So right off the bat, I would say we probably need to add an additional minister to your consultation in order to get to all treaty holders and all proper groups.
When it comes to Indigenous services specifically, we work closely with national organizations. However, to my earlier point, that doesn’t meet your needs.
In community, though, you will have health directors. You will have education directors. That doesn’t mean they can speak on behalf of a tribal council or the Chief for that community.
So when we’re looking at consultations for the actual services, we usually work with those health directors, with the principal of the school and so forth. So they do the actual implementation, but if you perform the consultation at the political level, you may be missing some of the rich information you need for the true implementation.
Therefore, I would argue you actually need both. You need the political will to do so, so you need that engagement with the right people at the right time in a meaningful way, but then you also need a consultation in the functional implementation, and that means you have to consult with those who would be on the implementation end.
I don’t know exactly how you would change that, but I leave that for consideration.
Senator Anderson: Just to follow up — and I’m saying this because I am from Tuktoyaktuk and very familiar with people that are on the front lines — regarding the change in employment, they may be there and answer your questions, but then you have other people who come into the communities and are not familiar with that previous engagement.
I would say in the North — especially in the Northwest Territories and smaller communities — it is highly problematic. There are people coming in from potentially other countries who have no knowledge of the North. We’ve had similar dealings in regard to some things that we were trying to implement in the Northwest Territories. The people on the front lines did not understand the concept at all regarding the Northwest Territories. Do you have any safeguards in place?
Ms. Novak: Yes and no. At the end of the day, we support organizations and services, and we fund them so they can enact and enable their programs and services in a way that’s meaningful for their community. Therefore, whom they recruit and bring in to do the actual service delivery is at arm’s length. The safeguards we have are within our terms and conditions for these broader needs. We can earmark funding to say this is dedicated for these efforts, but self-determination allows the community and the funding recipients flexibility in that implementation. Does it reach the actual resources to have those safeguards? No, they wouldn’t get down to them.
Senator Anderson: Thank you.
Senator Cuzner: I was reading through the brief presented by Dr. Milliea. In it, he contrasts the medical model to address fetal alcohol spectrum disorder, or FASD, with a holistic or community model. It’s an interesting brief.
As a Senate committee, we’re going to be faced with, I think, five Senate public bills that deal with national frameworks right now. They are about FASD, sickle cell, women’s health, heart failure and food allergies. You will be back here as regular guests, I would think, first of all, but so much of this falls under provincial jurisdiction as well. Do the frameworks start tripping over each other, or are there synergistic merits in working together on these topics? Could you give me your two cents’ worth, your overall opinion, about whether every particular issue needs its own framework?
Mr. Collins: Yes, as I indicated before, there is a danger that you can get a bit cynical about having a framework for this and a framework for that.
Senator Cuzner: Yes.
Mr. Collins: There is a big stakeholder risk as well. Tammy Bell has been living and breathing this because the most recent framework we put out and are working actively on is autism. That required an awful lot of stakeholder embroidery before the Minister of Health released a national strategy and a framework. The risk — and we’ve seen this happen — is that the first question posed will be this: Where are the dollars to back up the implementation? There is a beautiful, 35,000-foot-view risk of hot air, but when the rubber hits the road, how much are you able to actually advance?
In some respects, that is a false proposition because, again, the federal government is not looking to enter into front-line service delivery for autistic Canadians. It goes back to what I was saying earlier, which is that we must understand the role of the federal government in this particular space in terms of funding limited initiatives that can be scaled so we can innovate, then extrapolate and scale a particular investment; doubling down on research; further deepening surveillance, data capture and academic involvement in this particular space; and then, frankly, convening stakeholders — provinces and territories, Indigenous communities and beyond — in this area.
I’m inspired by your question because I think, at some point, whether within the Public Health Agency of Canada or outside our boundaries, you almost have to ask: Which framework worked well and what were the reasons that allowed it to? What were the critical success factors behind that framework versus another one that didn’t quite do as well? They all have unique circumstances, but that merits a little bit of reflection. Otherwise, the risk is that you’re bringing forward another framework that doesn’t do what you’re intending.
Senator Burey: Thank you for this candid discussion on frameworks and the role of the federal government because, after all, that is what we are here to optimize. The federal government does have a leadership role, as you say, Mr. Collins, in convening stakeholders, getting the data and so on.
You mentioned in your opening statement the upcoming bilateral agreements as a place where commonalities can be found or sought. Can you comment a little more on that process?
Mr. Collins: I’m going to be respectful of Health Canada, our sister organization, which leads those discussions and negotiations with the provinces and territories. I’ll be a little bit guarded.
Senator Burey: Thank you.
Mr. Collins: I don’t want to get outside of my lane, if you will.
However, identifying priorities within that funding is where there can be an opportunity. The challenge, of course, is on the accountability side. We’ve even seen this — and I’m looking at Senator Hay for a second — on the mental health side with the mental health accords that were put into place most recently, where funding is provided for specific purposes but there is a challenge at the back end regarding the results, the impact and the accountability measures.
As much as I did make reference to them — because there is active discussion with the provinces and territories — as well as our ability at the federal level to identify where we want to lean in on certain pieces, there likely is a limitation given the nature of federalism in this country.
Ms. Novak: A national framework allows and enables a national conversation. It creates this anchor where you can perform your convening role, perform your leadership role and bring people together. As we move forward with frameworks, we in the federal government choose areas where we feel there haven’t been diverse and broad national conversations about an issue. When we look at these different frameworks, we use them as anchors and benchmarks.
To the question just now about the frameworks, we can use that in those conversations with provinces and territories, but a lot of the bilateral agreements, specifically the ones that are currently being renewed, have a broad theme that states that under these shared priorities — there are four shared priorities — one of them is mental health and substance use. That’s fairly broad.
Senator Senior: This has been a great conversation. Thank you.
I’m going to go in a different direction because I’m curious about how this links not only the stigma attached to FASD but also the issues that folks with FASD experience. Is there any information, statistics or otherwise, that looks at the link between those with FASD and those who end up in penitentiaries and possibly even recidivism?
Ms. Novak: I’m not aware of any, but I don’t know if the report did anything there.
Mr. Collins: It’s a great question. You’ve piqued our curiosity, and I think we would have to explore that with colleagues from Correctional Service Canada, potentially, and go back to our own data surveillance to see what has been pulled out. The short answer is, no, we don’t have that information readily available, but we could look into it.
Ms. Novak: Correctional Service Canada has a health group, and they would have a list of everybody’s medical records and diagnoses, so they may have a list, but I wouldn’t be able to confirm one way or the other if it goes all the way down to a diagnosis for FASD within their data.
Mr. Collins: And we’ve all read some of the challenges around what the stats are. Is it 0.1%? Is it 4%?
Senator Senior: The difference here is clear between what health science is saying and what you’re saying as well. Thank you. If you find any information, please share it.
Senator Muggli: I’m going to return to the Calls to Action again. Do any of you know if there has been any specific or intentional work done by the Government of Canada related to Calls to Action 33 and 34? Also, should we consider adding some terminology to this bill that specifies that the framework take into account or use as a lens — I don’t know what the language is — but to use these two Calls to Action?
Ms. Novak: Yes, at Indigenous Services Canada, we already had just under $18 million dedicated for FASD and supports in communities for prevention efforts and education efforts. So when the Calls to Action came in, we were able to point to work that was already under way. So there wasn’t a new effort that was layered or added to it because there was already a program that was targeted and levelled. So did it get amplified? No. But were we already under way and doing work there? Absolutely.
Senator Muggli: Do you think it would be beneficial to call out the Calls to Action specifically in this framework?
Ms. Novak: Always. There is never a bad moment to bring up the recommendations.
Senator Muggli: As you said, nothing’s been added to that pot. As somebody who has worked in health care for a long time, it costs $1.2 million to have two nurses 24-7 in a facility.
Ms. Novak: Correct, yes.
Senator Muggli: So how far does $18 million go?
Ms. Novak: Not very far.
Senator Muggli: For 18 nurses 24-7, it’s not a lot.
Ms. Novak: No.
Senator Muggli: Thank you.
Senator Osler: I’m going to refer back. Mr. Collins, you said in one of your answers what framework really worked well and what the linchpins are. So my question is for both PHAC and ISC. Are there elements in this bill both PHAC and ISC anticipate could work well?
Mr. Collins: Yes. I’m going to reflect back on my response in 2024 when there was a question posed: “What is your position around the overall bill?” And I think my response — I made sure I checked on it yesterday — was one where I said we did not have an official position at that early stage. However, I see some symmetry and potential based on what is being put forward.
Again, when I look at the resources and tools, when I look at public education and targeted education, promoting research and, as we’ve been saying — Jen put a spotlight on it — in terms of the ability of a framework to amplify a particular issue, it behooves the federal government to convene an array of stakeholders to ask what more we can do in this particular space and where the gaps are. That’s why we commissioned the report from the Canadian Academy of Health Sciences. It wasn’t purely an academic exercise; it was to ask where this can be the platform for us moving forward.
It’s those basic elements that I mentioned two years ago and that I would double down on today in terms of where I see potential in this, while again recognizing this strays into provincial and territorial jurisdictions and is resource constrained. Therefore, we have to manage our expectations in terms of what this would be able to do.
Ms. Bell: Michael mentioned the autism strategy and the autism framework. Certainly, through the report from the Canadian Academy of Health Sciences, it’s really focused not only on the fact that we need to deal with prevention of FASD but on recognizing the social determinants of health writ large play an important role here. That goes beyond prevention and across the whole life course.
One of the things I’m reflecting on now as we’re implementing the autism strategy is those frameworks actually provide departments — whether it’s ISC or Health Canada or the Public Health Agency of Canada — an opportunity to then bring and convene all the federal partners around the table to have those conversations. Through the conversations today, you’ve already seen that it touches on justice, disabilities and education.
So, in addition to the convening role that we have with our provincial and territorial colleagues, it provides a bit of space for us to have conversations with our federal partners to figure out things like these: What do we need? What are we doing? How does this link to other existing initiatives? If you take mental health, for example, there are huge linkages with mental health, with family violence and with Indigenous programming, and it creates some space to do that.
The Chair: Thank you very much.
Senators, this brings us to the end of our first panel. I would like to thank the witnesses today for your testimony. This has been a really interesting conversation, as always.
Joining us for this panel, we welcome, by video conference, from the Canada FASD Research Network, Audrey McFarlane, Director, Strategic Partnerships and Initiatives. In person, we welcome Dr. Catherine Lebel, Professor of Radiology, University of Calgary, as an individual; from Elsipogtog Eastern Door Centre, Dr. Lori Vitale Cox, Director; and from the New Brunswick Fetal Alcohol Spectrum Disorder Centre of Excellence, Dr. Nicole LeBlanc, Founder and Medical Director, joined by Mi’kmaw Elder Noel Milliea of Elsipogtog, who works closely with the Centre of Excellence.
Thank you for joining us today. For your opening statements, you have five minutes each, which will be followed by questions from committee members. Ms. McFarlane, you’re first. The floor is yours.
Audrey McFarlane, Director, Strategic Partnerships and Initiatives, Canada FASD Research Network: Madam Chair and honourable senators, thank you for the opportunity to appear before you today as you study Bill S-234, An Act respecting a national framework for fetal alcohol spectrum disorder.
My name is Audrey McFarlane, and I am Director of Strategic Partnerships with the Canada Fetal Alcohol Spectrum Disorder Research Network, or CanFASD. I appreciate the opportunity to speak with you about fetal alcohol spectrum disorder, or FASD, and why a coordinated national framework is needed.
FASD is a lifelong neurodevelopmental disability associated with prenatal alcohol exposure. It can affect learning, memory, attention, emotional regulation, physical health and executive functioning. It is often described as a hidden disability because many people with FASD do not have visible physical features, yet it can impact almost every part of daily life.
I want to begin by emphasizing that FASD is not an issue of morality or blame. It is a public health, disability, social justice and systems issue. Alcohol use during pregnancy can be connected to many factors, including lack of pregnancy knowledge, addiction, trauma, poverty, mental health challenges or lack of support. Prevention must be grounded in accurate information, compassion and practical supports, not blame, fear or punishment.
From CanFASD’s perspective, the problem is not that Canada lacks knowledge about FASD. Researchers, clinicians, community organizations, Indigenous leaders, families and people with lived experience have built a strong body of knowledge. The problem is that this knowledge is not reaching people consistently across the country.
Access still depends too much on geography. Some communities have diagnostic capacity and specialized expertise; others face long wait-lists or no practical access at all. Adults may never receive a diagnosis, and caregivers are often left in navigate systems on their own.
This is why Bill S-234 is important. The bill does not replace provincial or territorial responsibilities for service delivery or impose one model on every jurisdiction. Instead, it creates a national structure for coordination, leadership and accountability across governments, departments and communities.
A strong national framework should better support data collection, common guidance on diagnosis referral and improved training for professionals and front-line workers. It should strengthen prevention through culturally appropriate, trauma-informed and non-stigmatizing public education. It must also address needs across the lifespan, including adolescents and adults, not just young children.
Indigenous partnership is essential. The framework must be developed with Indigenous Peoples, not simply about Indigenous Peoples. It should respect self-determination, cultural safety, community leadership and the Truth and Reconciliation Commission’s Calls to Action on FASD. A national framework should support and strengthen Indigenous-led, community-led models.
Bill S-234 also builds on work already done. In the previous Parliament, the Senate studied Bill S-253 and heard many of the same concerns: inconsistent access, weak national data, stigma, rural and remote barriers and gaps for adults and caregivers. More recently, the Canadian Academy of Health Sciences report reinforced the need for a stronger national approach.
Bill S-234 gives Parliament a mechanism to help turn that evidence into a coordinated national response.
I do not suggest that a framework alone will not solve every challenge, but it is a necessary starting point. It can help Canada move from fragmented action to coordinated action; from inconsistent supports to shared standards; and toward systems that better recognize the rights, strengths and potential of people with FASD.
I encourage the committee to study Bill S-234 with these goals in mind: not only prevention, but dignity; not only diagnosis, but support; and not only awareness, but accountability.
Thank you. I look forward to your questions.
The Chair: Perfect timing. Thank you very much, Ms. McFarlane.
Dr. Lebel, you have the floor.
Catherine Lebel, Professor of Radiology, University of Calgary, as an individual: Good morning. Thank you for the opportunity to speak today.
I am a professor of radiology at the University of Calgary and a developmental neuroscientist who has studied children’s brains, including children with FASD, for over two decades.
You have already heard from families and individuals sharing their perspectives on why this bill is so important — and it is. Today, I want to bring a research lens to why we need this bill.
Neuroscience tells us several clear things about FASD. First, prenatal alcohol exposure has widespread and measurable effects on brain structure and function. Second, these effects persist across the lifespan. Third, these effects are evident even at low levels of exposure — as low as one drink per week.
But what we don’t understand is also important. We don’t know how these brain changes translate into learning and behavioural challenges. We don’t know why outcomes vary so widely across individuals, which environments promote resilience or how to match the right treatments to the right individuals at the right time.
FASD is far more common than most people realize, affecting an estimated 4% of Canadians, or roughly one child in every classroom. Yet most individuals are never diagnosed, and many never receive the supports they need.
I hear this from families in our research programs, and you can see this in some of the submissions you have received.
But this is not because FASD is rare. It’s because of stigma, a lack of awareness and a profound shortage of research. There are 64 times more published research papers on autism than on FASD, despite FASD being more than twice as common. That disparity is not defensible and has real consequences. For example, there are no medications approved to treat FASD. Up to 90% of individuals with FASD have mental health challenges, but because FASD is rarely recognized as an underlying contributor, interventions are less likely to be effective than they are in the general population.
This bill addresses the conditions that have allowed this research gap to persist, and I want to speak to three provisions specifically.
First, the bill requires training and education for health care professionals. This matters because FASD is routinely missed or misdiagnosed, not because clinicians don’t care but because many have never been taught to recognize it. Better-trained professionals mean more opportunities to prevent FASD or an earlier diagnosis for those who do have it, enabling earlier support.
Second, the bill calls for national standards for diagnosis and support. Right now, access varies enormously, depending on where you live. An individual in one province may receive a comprehensive assessment, while an individual in another may wait years or never be assessed at all. National standards help create a minimum level of care that every Canadian with FASD deserves.
Third, and closest to my heart, the bill promotes research into prevention, diagnosis and supports. As a researcher, I can tell you how important this is. The open questions and FASD science are not minor refinements. They are fundamental. They go to the core of prediction, prevention and treatment. What drives variability in outcomes? How and why do challenges evolve over time? Which supports make the greatest difference? With coordinated investment, we can improve outcomes, reduce harm and help individuals with FASD lead fuller, healthier lives.
The preamble of the bill states that FASD occurs throughout the population regardless of socio-economic status, education or ethnicity. I think this presents a real opportunity because it means that the benefits will be felt everywhere. When we give children and individuals with FASD the support they need to succeed, we’re helping them, their families, their communities and our collective future.
What we need now is action, and I urge you to support this bill. Thank you.
The Chair: Thank you. Dr. Vitale Cox, you have the floor.
Lori Vitale Cox, Director, Elsipogtog Eastern Door Centre: I want to thank you for the opportunity to speak before you. I’m the Director of the Elsipogtog Eastern Door Centre. It’s an Indigenous multidisciplinary team for diagnosis, assessment, intervention and prevention. We have been going on a long time doing this work. It came out of a rash of suicides in the community. I had just finished my PhD and was hired as a school psychologist, and we really didn’t know where to go with it. We didn’t expect FASD. But because of my research background, I started to talk to people and hold focus groups and try to find out what was going on with the parents and the teachers and all of the health professionals. They all said this is much more than an educational issue. Then I started talking to the parents of the kids who were referred by the teachers, who had the most difficult issues.
I created an in-depth tool that we still use today to kind of screen the mothers. At the part where they were talking about prenatal drugs, alcohol and cigarettes, all of the different things, they disclosed that they had been drinking. It clicked that this is medical. There were other medical issues too. There was no doctor in the community at all. We had a physician come down, and a very high prevalence was found in the community.
Then there is what to do about it. We got together — again, we had focus groups. I was working with the Elders and the leaders in the community. We took it to the government, and at the time, we received funding to help the kids. Before that, we had a physician who came down. We found a trained physician. He came into the community, and we all got together with the nurse. As I said, there was a very high level of diagnosis, but it was very hard to get access. There was no access at that time.
Anyway, over time, giving supports to the kids really made a difference in the community. It changed things. For the kids who had such difficulties, you could see they were tight when they were in the school. After getting them the support they needed, you could see them become kids again and start to learn.
I just talked to somebody who went from being one of the kids who was having trouble in the community and in the school and with the law, and he just told me that he was going for his Bachelor of Education. He had finished college and was working in the school. He was back in the school working.
You see the kids in the community. You see them in the store and fishing, and it makes a difference. I know it makes a difference, because, aside from my research background with FASD, I’m married to somebody with FASD. He is a fisherman and a musician. For a long time, I didn’t know, until he was diagnosed. It’s an invisible disability. This is the problem.
What happens is the kids are judged. We have such a high rate in prison, and their disability is mistaken for criminality.
The thing I want to leave you with is this: After 20 years of the diagnosis — that was in 2000 — and the supports, we did another prevalence study in 2019-20. The prevalence had gone down by 50% in the community. You can read that. We have published an article about it. Also, the age of diagnosis was a couple of years earlier. The age when supports were introduced was a couple years earlier.
There is a turnaround. Our team is multidisciplinary. Noel is the Elder on our team, as well as working for New Brunswick FASD Centre of Excellence. Our work in the Indigenous community informed the New Brunswick FASD Centre of Excellence. That’s why our Elder is affiliated with it.
We have a very unique model of healing. It’s different. It came from the community. The community said — it wasn’t just about preventing mothers from drinking. It was about preventing the secondary conditions, and it was generational healing working.
I think this bill is so important. It offers such hope to people.
I was part of an expert panel from the Canadian Academy of Health Sciences. People all over the country want this bill.
The Chair: Thank you very much, Dr. Vitale Cox.
Dr. LeBlanc, you have the floor.
[Translation]
Dr. Nicole LeBlanc, Founder and Medical Director, New Brunswick Fetal Alcohol Spectrum Disorder Centre of Excellence: Madam Chair and honourable senators, thank you for the opportunity — indeed, the privilege — to appear before you today as part of your study of Bill S-234.
I am Dr. Nicole LeBlanc, Pediatrician, Founder and Medical Director of the New Brunswick Fetal Alcohol Spectrum Disorder Centre of Excellence.
[English]
I’m also joined today by Elder Noel Milliea, a longstanding partner of our centre and a respected First Nations leader. His expertise, wisdom and commitment to the well-being of Indigenous communities have contributed significantly to the development of our centre and of culturally safe approaches to FASD. He will also be available to answer questions following this presentation.
I would like to begin with Ben’s words, “People don’t see me or hear me. They don’t get my brain, Mom.”
[Translation]
That one sentence sums up the issue we’re discussing today. FASD is invisible. The challenges are visible, but the neurodevelopmental causes behind them are far too often less visible. The behaviours are misinterpreted. Expectations are not adapted, and interventions do not meet the person’s real needs.
Over the past few years, I have had the privilege of working with hundreds of individuals with lived experience with FASD, their families, professionals and community partners. One reality keeps coming up: In Canada, access to diagnosis, expertise and services still too often depends on the postal code. Depending on where a person lives, they may have access to a specialized team and tailored services or, on the contrary, wait years for answers. These inequities are particularly pronounced in several regions in Eastern Canada, in rural and remote communities as well as in several Indigenous communities, where access to specialized expertise and culturally safe services remains limited.
For those affected and their families, the consequences are very real and devastating. These families often have to navigate multiple systems that do not always speak the same language. They tell their story over and over again, seek answers, coordinate services themselves and advocate constantly for their needs. This exhaustion is real.
[English]
As our patient partner Tanya so powerfully reminds us, parents should not have to exhaust themselves teaching Canada one professional at a time.
[Translation]
This quote highlights a fundamental challenge. Despite the progress that has been made, FASD remains insufficiently integrated into the training of many professionals across all sectors. When knowledge is limited, it is replaced by bias, judgment and disinformation.
This places an additional burden on individuals with lived experience with FASD and their families. They have to explain their condition, correct conventional wisdom and defend their needs. That should not be their responsibility.
New Brunswick’s experience has also shown us that no single department or sector can address this reality alone. FASD affects health, education, social services, justice, mental health, addictions, housing, employment and community life.
In New Brunswick, we worked with elders, knowledge keepers and First Nations representatives to develop the Dream Catcher service delivery model. This initiative was designed not just for Indigenous communities, but with them. It draws on their knowledge, strengths and priorities to provide services that are better tailored to their reality.
This experience reminds us of a critical lesson: No one organization, government or sector has all the answers. The best solutions are the ones we build together.
This is precisely why Bill S-234 is so important. A national framework is not about standardizing practices across provinces and territories; it’s about creating a shared vision, strengthening knowledge sharing and building capacity across the country.
[English]
To conclude, I will close with the words of Alicia, a mother who lived the reality every day.
Bill S-234 gives me hope. Hope that awareness will replace ignorance. Hope that compassion will overcome stigma. Hope that people living with FASD will finally be seen, understood, and supported.
For countless individuals and families, this bill represents far more than legislation; it represents dignity, opportunity, and the chance for a better future.
Thank you, wela’lin.
The Chair: Thank you, Dr. LeBlanc.
We’ll now proceed with questions from committee members. For this panel, senators will have four minutes each for your question, and that includes the answer.
Senator Burey: Thank you all for being here. This question is for all the witnesses. I’m a pediatrician. It is a compelling case you have made for some national leadership. There obviously are huge gaps, multiple sectors involved, the cost to society and, of course, the return on investment, which we know about but you haven’t touched on.
I want to go specifically to this bill to see — because we’re talking about the federal role — if we could improve it based on some of the things you have said.
For example, we heard about the importance of a data network, data gathering, recognizing a distinction-based approach and data sovereignty. Is there anything that we need to strengthen so that a real pan-Canadian data network can be established?
Ms. Vitale Cox: You need to have diagnoses. You need to have assessments because you can’t collect data if you don’t have data, in terms of knowing if what you’re doing is helpful, accurate prevalence and the connection between, for instance, prenatal alcohol and iron deficiency, polydrug use and other things. We don’t really know why, as was said, one person would be affected more than another.
In order to collect the data, you need to have a way of seeing it. It’s invisible now. That’s why the training, in terms of all of the things that —
Senator Burey: Dr. LeBlanc?
Dr. LeBlanc: From a data perspective, I think that one of the elements we need to put emphasis on is connecting the data to clinics and what is actually being done on the ground. I think there are still multiple gaps.
Senator Burey: Yes.
Dr. LeBlanc: From our experience in New Brunswick, I think we’re where we are now because there was shared data. We were able to leverage that data to bring it to our government and to bring it to where we are now.
Noel Milliea, Elder, New Brunswick Fetal Alcohol Spectrum Disorder Centre of Excellence: To add to that a little bit regarding how important that is, when we look at data that’s readily available out there, especially within the area of corrections and the trauma that’s happening within that system in regard to undiagnosed Aboriginal offenders that exist there, there’s plenty of data that recognizes some of these things and the prevalence of Aboriginal offenders to be reincarcerated time and time again. Sometimes, we have to stop and ask why that is.
Some of our data and our findings tell us that in order to help support somebody with fetal alcohol syndrome, you need repetition and consistency in the work that you do. You cannot find a better system with respect to repetition and consistency than the federal prison.
Senator Burey: From online, Ms. McFarlane, did you wish to comment?
Ms. McFarlane: Yes, thank you. It would be useful for the federal government to take a leadership role in this area.
We haven’t seen much in the part of convening all of the available data that’s already out there.
CanFASD does have a national FASD database with about 5,000 records in it, where information comes anonymously from diagnostic clinics across Canada. However, this is not a surveillance tool. It is just a point in time, but it does tell us a lot of information about things that people need and the experiences that they’re having. We haven’t been able to expand on that or make it readily available to others.
There is a role to build capacity for more diagnostic services, to build that surveillance system and to build national reporting that currently doesn’t exist.
The Chair: Thank you very much.
I would like to insert a question here. As a pediatrician who takes care of neurodevelopmentally challenged infants, we talked a little bit about the fact that front-line medical providers are often challenged with the knowledge gap. We know that they’re also challenged with navigating the system of care because, frankly, we interface with agencies that are not necessarily adjusting to pediatrics. Many of the neurodevelopmental diagnoses are not recognized in a disability forum. We talked a little bit about this.
As legislators, we often want to look at how to streamline access and processes so that, coming out of this kind of legislation, we make it better for providers to do a better job. How do you see this particular piece of legislation helping beyond the education piece, navigating systems such as the CRA and others that aren’t necessarily friendly to us in pediatrics and helping in terms of parents accessing care in a holistic fashion?
Dr. LeBlanc: Can I speak to that?
The Chair: Yes.
Dr. LeBlanc: I’m also Associate Dean at the Faculty of Medicine at the University of Sherbrooke and the University of Moncton. We’re talking about outside education, but no med schools have official programs. I’m talking about med schools, but we could talk about nursing or law as well.
Fundamentally, in terms of the training piece, this bill would help us leverage, across the country, elements of training that are essential.
From the component of navigating the system, in our province — we’re a small province — we have very few resources. These kids are in our system. We just have to look at them through a different lens, and we have to look at them through their lens. Too often, we try to put our system lens and our way of thinking and our medical model in their hands. It’s a shift.
In the province of New Brunswick, the way we got around that is we have some community coordinators, and they actually level the care and bring it back to the centre, but they level the care within the community. That has helped to build capacity, and I think that is one of the strengths that we could probably leverage elsewhere in Canada as well.
The Chair: Thank you. You’re talking about upscaling there.
Senator Boudreau: Welcome to the witnesses today, particularly those from New Brunswick. I always love to see New Brunswickers at the table.
[Translation]
My question is for Dr. LeBlanc.
You alluded to it in your opening remarks. When we talk about a national framework, we have to take into consideration linguistic minorities, the involvement of Indigenous peoples, as well as rural and remote communities. You started to give the answer I was looking for. We have all that in New Brunswick. We have a well-functioning centre of excellence that provides culturally and linguistically appropriate services. What other examples or information could you give us, drawing on the provincial system in New Brunswick, that could be used at the national level as part of this bill?
Dr. LeBlanc: In New Brunswick, I think our strength has been the ability to work together. That aspect is present at the national level. New Brunswick did not form on its own. Without people from the west, CanFASD and support, nothing would have been possible. The previous panel even discussed the 2003 framework. We are the result of the positive impact of the framework. It provides us with a framework with which we can move forward. We are doing a lot of great things in New Brunswick. At the same time, many of these aspects could be shared.
I will briefly mention the francophone aspect. In Canada, and even worldwide, we are one of the few resources within the francophone community. In Quebec, there are still very few resources. If we were to look at a map with small dots marking the locations of these resources, we would see very few in the eastern part of the country. However, Quebec is also part of this community. I think we should look at that and ask ourselves why that is. A national framework would allow us to have those discussions.
[English]
Senator Boudreau: I would like to hear from Elder Milliea from Elsipogtog as well. What are we doing right in New Brunswick to include our First Nation communities? Again, what learnings would there be at the national level based on the experience that you’ve had in New Brunswick?
Mr. Milliea: One of the powerful things we’ve done in New Brunswick regards the whole notion of developing and nurturing relationships with each other. I think that’s the key process in building good, successful programs. You have to remember that, like with any relationship building within mainstream society, we have to incorporate trauma-informed processes and principles — in other words, understanding the power of colonization and assimilation, what it has done to people and how we can help nurture healing to happen in a good way.
We deal with fetal alcohol syndrome. Unfortunately, we can’t deal with it as a separate entity. It’s part of the root cause that we have to look at when we look at the systems where moms may have been drinking. Is drinking the issue? I think it’s the “why.” Why does Mom need to drink?
I think now we’re starting to understand the normalization of trauma in First Nation communities. Once we understand that and have a clear concept of it, then we can build very unique programs based on holistic healing that take into consideration the whole human spirit and the body of the individual we’re dealing with. These are all important things for us to be able to look at during this process: relationship building and not being afraid to speak out. I love my people a lot, so I don’t have any hesitancy in speaking out when I only want the very best for them. Today being the day after the National Day for Truth and Reconciliation, I think it’s an opportunity for us to be able to plant seeds of possibilities because our people have dreams as well.
The Chair: Thank you very much, Elder.
Senator Senior: Dr. Vitale Cox and Dr. Lebel both talked about the effectiveness of the treatment, but what remains a gap for me is this: I think I also heard something about being able to diagnose but not knowing why or how FASD impacts the brain. Am I correct in that? There is something you said you did not know, so I’m trying to understand —
Ms. Vitale Cox: I was talking about how there are so many factors regarding why one woman might drink a certain amount and another wouldn’t, and this is why research data is needed.
Senator Senior: Yes.
Ms. Vitale Cox: Research data is needed in all different areas.
Senator Senior: I will just finish my question.
Ms. Vitale Cox: Sorry. I thought you were finished.
Senator Senior: I am trying to understand. Dr. Lebel, I would like to hear from you as well, because I understood that part, but I thought I heard that there was also another medical part that probably wasn’t clear.
What is the treatment if you don’t understand that part?
Ms. Lebel: We have increasingly good data showing that there are brain effects of fetal alcohol spectrum disorder, or FASD. What we really don’t understand are the more subtle questions around that. What does that look like for different individuals? How do other factors contribute to those brain differences? When might be the best time to intervene? Who might benefit the most from intervention X, Y or Z?
Perhaps that’s what I was less clear on in my remarks, but we have supports. What we don’t always understand is whom to give them to, when to provide them and why they might benefit the most from that.
Senator Senior: Okay.
Ms. Lebel: In other developmental disorders, for example, like autism, which has had so much more research, there are a lot of unanswered questions, but we have a much better fundamental understanding of the heterogeneity of the condition and how and when to target supports.
I think that is really what is missing in FASD here and now. We know it’s a problem, and we don’t really know how to best support individuals.
Senator Senior: Thank you.
Dr. Vitale Cox, it seems like the treatment is very effective. Could you describe that a little bit for us?
Ms. Vitale Cox: In the community, when we first had the issues, the way that they addressed it was a seven-direction way, which is very different than the mainstream, you might say, because it had to do with supporting the mother. They talked about supporting mothers and doing primary-type prevention and then supporting the child who was diagnosed with it as soon as possible and having the diagnosis be as soon as possible because the brain is plastic, and you can change what’s happening if you get in there early.
Senator Senior: That’s very helpful. Thank you very much. I just have a follow-up question.
Ms. Vitale Cox: There are other elements to that.
Senator Senior: Can I ask my question, and maybe that will come up somewhere else?
Ms. Vitale Cox: Yes.
Senator Senior: I wonder if the data you collect, particularly for Ms. McFarlane, is disaggregated.
Ms. McFarlane: Yes, the information is disaggregated and covers about 3,000 data points for each person, so we have a lot of data.
Senator Osler: Thank you to all the witnesses for being here today. I have a very specific question for Dr. LeBlanc, and I will have you put your associate dean hat on.
The national framework must include measures to address the training, education and guidance needs of health care and other professionals regarding the prevention and diagnosis of FASD. With that associate dean hat on, how would a national framework influence medical school curricula?
Dr. LeBlanc: First, it would bring it to the forefront and put it as a priority. Right now, it just gets very diluted, and it would leverage the different faculties to think about it, really, as an entire body disorder.
For too long, one of the challenges has been that FASD, initially, was more of a diagnosis of the face, and then we talked about a diagnosis of the brain, and now we’re talking about it as a full-body diagnosis.
A lot of times in the medical world, people don’t see it as related to them, so looking at it through that full-body lens and bringing these issues to the table at a national level would help us have that broader perspective and would help us leverage med schools. We talk about med schools, but it’s really across the board in all elements of education.
Senator Osler: I agree, and we are not talking to nursing and other health professionals —
Dr. LeBlanc: Nursing and law.
Senator Osler: — who are not here. I’m not picking on you. I’m picking your brain as an associate dean of medicine.
It would depend on each individual medical school and university in terms of how much emphasis they would put on changing their curricula, based on the framework.
Dr. LeBlanc: Yes.
Senator Osler: Can you tell me, in your experience as an associate dean, how could a framework gain traction among deans of medical schools — I’ll leave it at that — to increase the education of it in their curricula?
Dr. LeBlanc: We need to start with having the discussion, because right now it’s not even on the table. For a framework like this — and I think that Audrey McFarlane wants to comment; I saw her hand go up there — the discussion right now is not even happening because it doesn’t make it to the priorities.
Senator Osler: If there is time, Ms. McFarlane?
Ms. McFarlane: Yes, Dr. LeBlanc is right that it would raise the profile, but a framework could also work to set some national standards and core competencies for different professions, which would then influence what universities and colleges might add to their curricula.
Senator Muggli: Ms. McFarlane, I was just reviewing your report on the follow-up to Call to Action 34. Can you tell me when that was published?
Ms. McFarlane: Shortly after the Calls to Action came out, so probably about 10 years ago now.
Senator Muggli: Have there been any updates to it?
Ms. McFarlane: No, but we have been working on the justice side of things. That is one of our pillars of research, and all our work is collaborative and includes Indigenous partnerships.
We have been working to better understand the justice system and FASD, the number of people, what their needs are and how we influence and support corrections so that we can reduce recidivism and those kinds of things.
Also, we have a pillar around diagnosis, which Call to Action 34 also speaks to, so trying to figure out ways to use the limited data that we have to improve diagnostic efficiencies, reduce costs and help build capacity.
Senator Muggli: But my question is this: Would it be helpful to include in this report — and this is a question also for Elder Milliea — an intentional phrasing to ensure Calls to Action 33 and 34 are considered in this framework?
Mr. Milliea: Absolutely.
Senator Muggli: I’ll go to Ms. McFarlane; I know there must be some enthusiasm here.
Ms. McFarlane: I would be supportive of that amendment and for it to be that specific.
The federal government hasn’t done that specifically around these areas, but a lot of civil society organizations have been working to address both Calls to Action 33 and 34.
Senator Muggli: So there is an intention to inspire some action there.
Elder?
Mr. Milliea: Yes, absolutely. I fully support that process as well as, just to add a little caveat, ensuring that there is an inclusion component within the bill so that First Nation people are a part of the developmental part when it comes to Indigenous-led ways.
In other words, don’t present it to First Nations people as something that’s already complete. Let us help complete that with you for our people. It’s very important that we include that as part of the amendment to honour the intent of the Calls to Action, for sure.
Senator Muggli: Thank you. That’s all.
[Translation]
Senator Petitclerc: Thank you so much for being here with us today.
I will continue with the same question I asked our previous witnesses.
We have heard from groups where people have told us that one of the problems is that FASD is not recognized as a disability. That’s the angle of my question. What are your thoughts on that? Should FASD be recognized automatically or on a case-by-case basis, depending on the individual? What kind of impact could this recognition, this identity, have? Can you give us some examples of the impact this could have?
Dr. LeBlanc: I’ll start.
Yes, indeed. In terms of identifying as a disability, the simple answer is yes. However, every individual is unique. At the time of assessment and diagnosis, our process is not just a medical examination by a physician; it is an interdisciplinary approach. That’s important. The reason for this is that there isn’t one doctor who is able to assess the 10 areas of the brain that need to be assessed. Each individual is unique, and recommendations must be directly related to the individual’s needs. This can provide services tailored to the needs of the individual. The way our systems currently work, it’s often the parents who have to keep coming back to try to convince people once again of the importance of the diagnosis. The recognition of FASD as a disability is certainly critical.
[English]
Ms. McFarlane: Thank you. Most provinces and territories do recognize FASD as a disability now. That has been occurring over the past several years. Federally, it is recognized by the CRC, but it is very difficult to obtain the Disability Tax Benefit, so that is complicated. So some training would be helpful for physicians and professionals filling out those forms. An example you asked for would be in a provincial system in education. So once a child has a formal diagnosis, then the school division is legally responsible for providing services to that child based on their disability. So it does make a difference.
Senator Arnold: First, I want to say what a proud New Brunswick moment it is. We don’t often get such an array of New Brunswickers before us, so thank you for being here. I think it really speaks to the collaborative milieu that is New Brunswick and how important relationships are, so thank you for that.
My question today, after hearing that 4% of kids are afflicted — one in every classroom — and that autism research gets 65 times the investment, Dr. Lebel, as someone who I’m assuming has tried to apply for research funding, what are the primary barriers?
Ms. Lebel: That is an excellent question. There are many barriers, but many come back to stigma. When I submit a research grant to study FASD, the people reviewing my grants are other researchers who may not have heard of FASD because it is not publicly well known. They might not understand the prevalence. And I cover these things in my research grants, but if it’s not publicly seen as a priority, it’s also not seen as a priority for research funding organizations. So that’s where the recognition at a national level really ties into all these different facets. So there is funding, but there is not as much funding going toward FASD as toward other areas.
This stigma also comes when I try to publish my research because the people reviewing my research don’t think it’s important. It doesn’t go in the same types of journals that other research goes into. Universities are perhaps less likely to hire researchers who are devoted entirely to FASD versus another condition that is, again, seen as more important.
So this stigma and awareness piece is really driving a lot of this discrepancy. So the more we can do to bring this to the forefront and really make the entire public aware of it, the more it will support research. Of course, dedicated funding and special calls for research into FASD are good ways to do this as well, but also reducing stigma and increasing awareness will broadly support this.
Dr. LeBlanc: I would like to comment on the stigma piece as well because we had good discussions on stigma this morning. Society has a very complex relationship with alcohol. We talk about stigma, but when we talk about stigma, it identifies an individual. But as we talk about stigma with First Nations, it’s the normalization that kind of has us all numb to making a priority because, as a society, we have a complex relationship with alcohol. So we talk about stigma, but it is deeper than that. It is now normalized. So when it’s normalized, you have to go that extra step to even identify it as a problem.
Senator Ouellette: Unfortunately, the question on diagnosis and treatment was addressed by a senator, so I’ll have to take a deeper dive.
[Translation]
I would like to thank the panel for explaining this very important and under-addressed problem. I would especially like to recognize my colleague Dr. Nicole LeBlanc, who started the same year as I did. We have been colleagues in Moncton for over 25 years.
Congratulations, Nicole, on your work.
[English]
This goes more to Dr. Vitale Cox, and it has to do with addressing personalized diagnosis and intervention. We heard how this affects the course of a younger person. What happens with older teenagers or young adults if we can correctly diagnose or bring in a personalized intervention? How does this affect this person’s outcomes, and how does this allow this individual to normalize and be functional in society?
Ms. Vitale Cox: What you see is that when you start to give the interventions and the diagnosis, they understand. If it’s invisible, it is also invisible to themselves. There is a lot of self‑blame because they don’t understand the behaviour. It’s not intentional. The behaviour is punished, and they are always blamed for it. So if you give them an opportunity to heal or be supported instead of being punished, you’ll see a real change in the outcome.
The problem is that the supports only last — at 18, the kid with FASD is much younger developmentally. In my experience, they don’t mature until the brain is finished developing, like at 30. When they turn 18, we stop supporting them. We have all of this success, and then all of a sudden they graduate college or high school and there is nothing there for them. The supports need to continue. It’s as the Elders say: There is no cure, but there is healing. You give people the chance to learn how to manage, but you always need that level of support they can utilize to be there. They might need a counsellor because of mental health issues and anxiety. It’s often associated with high rates of depression and anxiety later in life, so you need the supports to be available.
They go in and have their children, and they have no one to help them. Then they fall. I have seen it. I have seen the kids just fall through the cracks. So you have to keep offering the kids support. When they get in trouble with the law through their teenage years, you have to be there, to understand it and to give them a way of understanding their own behaviour so they can change.
Dr. LeBlanc: There is still very little adult diagnosis. There is very little capacity to diagnose adults in Canada. For example, in New Brunswick, we were mandated up to 19. Obtaining an adult diagnosis is problematic.
The Chair: Thank you very much. This brings us to the end of this meeting. I would like to thank all the witnesses for your time today and for the insight you bring to this discussion. For us as legislators, this is very important. Thanks for being with us today.
(The committee adjourned.)