THE STANDING SENATE COMMITTEE ON OFFICIAL LANGUAGES
EVIDENCE
OTTAWA, Monday, October 21, 2024
The Standing Senate Committee on Official Languages met with videoconference this day at 5 p.m. [ET] to study matters relating to minority-language health services.
Senator René Cormier (Chair) in the chair.
The Chair: Good afternoon, esteemed colleagues.
I am René Cormier, senator from New Brunswick and chair of the Standing Senate Committee on Official Languages.
Before we begin, I would like to ask all senators and other in-person participants to consult the cards on the table for guidelines to prevent audio feedback incidents.
Please make sure to keep your earpiece away from all microphones at all times. When you are not using your earpiece, place it face down on the sticker placed on the table for this purpose. Thank you all for your cooperation.
[Translation]
I would now invite committee members to introduce themselves, starting on my left.
Senator Moncion: Good afternoon. Lucie Moncion, Ontario.
Senator Clement: Bernadette Clement, Ontario.
Senator Mégie: Marie-Françoise Mégie, Quebec.
The Chair: Welcome, esteemed colleagues.
[English]
I wish to welcome all of you and viewers across the country who may be watching. I would like to point out that I’m taking part in this meeting from within the unceded traditional territory of the Algonquin Anishinaabe Nation. Tonight we continue our study on minority-language health services by welcoming a witness able to address the theme of vulnerable communities, one of the seven themes of our study. For our first panel, we welcome in person Mr. Derek B. Montour, President, First Nations of Quebec and Labrador Health and Social Services Commission. Welcome, good evening, and thank you for accepting the committee’s invitation. We will now hear your opening remarks. They will be followed by questions from the senators.
Mr. Montour, the floor is yours.
Derek B. Montour, President, First Nations of Quebec and Labrador Health and Social Services Commission: [Indigenous language spoken]. My English name is Derek Montour. I serve as the president of the board of directors of the First Nations of Quebec and Labrador Health and Social Services Commission. I also serve as the Executive Director for Kahnawà:ke Shakotiia’takehnhas Community Services.
I want to thank the Creator for giving us this opportunity and me the opportunity to be here today, and thank you for the invitation. I want to acknowledge as well that we are on the unceded territory of the Algonquin Anishinaabe people, and I thank them for allowing us onto this land.
I would like to thank you for this opportunity to testify today. My presentation will focus on the elements presented in the brief that you will be provided with and that will be submitted later today to the members of the committee.
Even though the objective of your study is to recommend to the federal government the measures to be taken to ensure the delivery of health services in a language of the minorities, we will allow ourselves to go beyond these elements by sharing with you the linguistic issues experienced by First Nations and First Nations in Quebec particularly.
We believe that the health and wellness services provided to First Nations must be based on an integrated and holistic vision of wellness. This must necessarily take into account the social determinants of Indigenous health, which include culture and language. Finally, we cannot address health and wellness without emphasizing First Nations’ self-determination, considering the First Nations right to self-determination and self-government in matters of health and wellness, as well as the conflicting and overlapping of provincial, federal or First Nations jurisdictions.
First, the legal framework, the United Nations Declaration on the Rights of Indigenous Peoples, or UNDRIP, addresses the linguistic issues experienced by Indigenous peoples. In terms of health, Article 24 in particular states
Indigenous peoples have the right to their traditional medicines and to maintain their health practices, including the conservation of their vital medicinal plants, animals and minerals. Indigenous individuals also have the right to access, without any discrimination, to all social and health services.
The legal framework governing health service delivery and access for First Nations in Quebec is complex because it is based on the constitutional principles and standards, federal and provincial laws and policies, and various agreements. These are often or were often created without First Nations’ input.
For its part, the Quebec government is responsible for developing, organizing and ensuring delivery of health services for all people residing in Quebec, including First Nations. However, Quebec maintains that the health and social services offered in First Nations communities remain the responsibility of the federal government, with the exception of medical care that is specifically covered by the Régie de l’assurance maladie du Québec.
In most cases, the Quebec government refuses to provide health services in a community unless there is an agreement to hold the community or the federal government responsible for paying the full cost of these services. But, on the other hand, the federal government does not fund many of those services that are normally offered by provincial institutions. This situation then creates access issues — particularly in terms of the continuity of these services — when you go from one service to another, and it has the effect of depriving First Nations of essential services.
For its part, the federal government has an obligation to take into account the values of the Canadian Charter of Rights and Freedoms in carrying out its obligations. It also has obligations on the quasi-constitutional Official Languages Act, which includes the obligation to establish in both official languages any act that falls within the executive power to commit, to protect and to promote French and to take positive measures to ensure the implementation of this commitment.
Second is access to services. Of all the characteristics of First Nations, the linguistic aspect is of particular importance. On June 1, 2022, the Act respecting French, the official common language of Québec, or “the act,” came into force. These amendments made to the charter raised many issues in terms of the fundamental rights of First Nations and that the federal government also has an obligation to help address.
On April 20, 2023, the Assembly of the First Nations of Quebec-Labrador, or AFNQL, and the First Nations Education Council filed an appeal for a judicial review with the Superior Court, attacking 14 provisions of that charter. Such an obligation does not take into consideration the fact that the majority of First Nations use French or English as a second language. In some cases, this reality limits access to health and social service professionals.
There are still significant issues regarding access to the profession in the health and social services field for First Nations people. It is important to keep in mind that they remain historical victims of the Indian Act, which required, from 1876 to 1920, enfranchisement of any Indian who wanted to become a lawyer or a doctor. Currently, English-speaking candidates in particular, as professionals, have difficulty obtaining information in English regarding the practice of professions in Quebec and the associated licenses, and yet this information is essential to the practice of their profession in terms of providing quality care to users, particularly in English-speaking communities.
Third, the importance of culturally safe environments. In terms of access to health and social services and access to professions in these fields, a cultural safety approach must be advocated for and, taken into account, respect for the linguistic differences of First Nations. The chiefs of the AFNQL adopted a declaration promoting the right to culturally appropriate public services, including the right to access care and training that are appropriate to the linguistic realities of First Nations.
It’s important to note that the Quebec government continues to deny the existence of systemic discrimination, despite repeated calls from Indigenous leaders and various organizations to recognize Joyce’s Principle following the tragic death of Joyce Echaquan.
In conclusion, the reflections presented highlight the complexity and challenges that First Nations experience in terms of health in Quebec. In some cases, issues related to language of use cause First Nations to seek health services in neighbouring provinces and, in other cases, not to even visit establishments in the Quebec network due to the incidents of racism and discrimination experienced or reported in the history of Quebec in Canada.
Solutions must be put forward to resolve these issues. This is why we invite the Government of Canada to adopt the national standard for cultural safety that would be integrated into the organizational mechanisms for evaluating the quality and performance of public services. Even if the Government of Canada cannot interfere in the powers of provinces, which are recognized in section 92 of the Constitution Act, 1867, it can, however, use the funding mechanism as a lever of influence among the provinces and territories and to promote rigorous health standards for all Canadians.
We therefore invite the Government of Canada to use funding as leverage with the provinces and territories to promote respect for the linguistic rights of Indigenous peoples. Such an approach, let us recall, is part of a broader framework on the United Nations Declaration on the Rights of Indigenous Peoples.
[ Indigenous language spoken. ] Thank you once again for having me here.
The Chair: Thank you so much, Mr. Montour, for this statement. We are ready now for questions from our colleague senators.
[Translation]
Senator Mégie: Thank you, Mr. Montour. I’m going to ask my question in French, but you can answer in English; we have interpreters.
I heard you say that First Nations people have trouble accessing medical training to become doctors or nurses. Is this something that used to happen, or does it still happen?
[English]
Mr. Montour: I will respond in English. Our community was colonized by the English not the French. In particular, laws are getting more and stringent requiring the amount that have needs to be spoken in French. To give you an easy example, with the order of social workers, any of the training that they recognize are all in French. There is none in English, so in actuality, our social workers can’t get the correct training that then can be recognized by the order of social workers.
It’s similar to challenges in other areas. We know that there has been some allowances by the Quebec government — and in particular certain orders — to recognize Indigenous professionals and have them either grandfathered in or an exception to the rule of French-speaking, assuming they are providing that service within a community.
But we have limited numbers. There is a limited number of people and limited number of Indigenous people that are in the health or social services professions. The challenge is finding qualified professionals who speak English or a First Nations language that can also then perform in the community because they still need to pass the French or get French-language training in order to justify for the requirements of the order.
[Translation]
Senator Mégie: I’m surprised by your comment, because I know that when it comes to medicine, McGill University is open to everyone, and so is the Université de Montréal. It’s in English at McGill University, but I believe there is an English-French mix now. Those options would have been possible. If you tell me that up to now, we’re talking about the order of social workers and not the order of physicians, they are able to access their training.
[English]
Mr. Montour: A woman from our community named Ojistoh Horn is a physician. She became a physician in British Columbia. She moved back home in order to practise. She only desired to work within the community. I think she attempted to pass the French exam five times and was not successful. She therefore was not able to continue practising within First Nations communities. She actually now works in Akwesasne within Ontario. It’s a prime example of a community member who desires to work in Quebec, who desires to work in First Nations communities, and who is not able to so. It does happen with physicians as well. I can’t tell you the exact numbers.
We’re actually having an upcoming forum — almost a celebration — for Indigenous people who are in the health professions field just to keep encouraging those people seeking professions in the area.
I think we still can add additional opportunities for mentorship and support in order to encourage success in those fields, but at the end of the day, the challenge ends up becoming passing the French exams or other exams in order to practise within our own communities. Our community is not a French-speaking community. We’re struggling with just maintaining our own languages at this point. It is dying as a result of the Indian day schools and residential schools.
When I went to school, for example, in one hour a week of Kanien’kehá:ka, my language, just like we had one hour of French a week. I’m not a good French speaker. I’m also not a very good Kanien’kehá:ka speaker.
In order for us to retain ourselves — and we can argue as a people the loss of language and does that then define a people — at the end of the day, a choice has to be made by the people. Whether it’s Innu, Mi’kmaq, Atikamekw or Kanien’kehá:ka, we are all faced with that challenging decision.
[Translation]
Senator Mégie: You mentioned mentoring. I can see that we’re on the right track, but it happens more in the community when those who have already paved the way for others can support them.
What meaningful action do you think institutions or government could take to help overcome these kinds of obstacles? Have you already discussed anything concrete in your community?
[English]
Mr. Montour: I think mentorship extends not within just the community or regionally. I hear your point. I mean no disrespect; I don’t know the inner workings of the Senate’s role versus provincial influence versus the Parliament, but I’m astounded that a province can continue to create laws related to language using the legislation itself to, in many respects, bypass the human rights of those who are English-speaking in order to continue to push French as the predominant only language to be able to be used.
From a systemic discrimination perspective, our community used to be trilingual. We used to speak completely French, Kanien’kehá:ka and English. We were forced to speak English outside of any other language within my own community and these are same as Mi’kmaq and Algonquin communities — Kitigan Zibi, for example.
We’re now left in a situation, as I tried to articulate earlier, where anything outside of the community becomes more predominantly French, and there is little recognition of Kanien’kehá:ka or the desire to recognize that language, let alone English. It becomes harder and harder for any community member. Think of an elder, somebody who has assisted living or who has medical conditions. They go to a facility where they are confronted by people who refuse to speak in English, refuse to acknowledge the challenge that they are faced with, and they are supported by the law itself, even though Canada states that it’s two official languages. In Quebec, more and more, they can argue that it’s just French.
I do not see how that is not a systemic discrimination issue. I do not see how that is not an issue for the Canadian Senate or Parliament to try and address.
[Translation]
Senator Mégie: Thank you.
[English]
Senator Moncion: I want to go back to something you said about the jurisdictional divide between the federal government and the provincial government. Health is provincial, but the government of the province is saying that they will not provide health professionals unless they are paid by the federal government. Did I hear you right?
Mr. Montour: Correct.
Senator Moncion: Okay. There are a lot of transfers coming from the federal government towards health in Quebec. They are receiving billions of dollars every year. There is also the Official Languages Act, and the official language funds that are supposed to be accessible for services that are provided to minority groups in the province of Quebec.
Do you have access to any of these funds? Do you know if you have access to those?
Mr. Montour: No. I think that’s why, in our conclusion, we encourage the Government of Canada to use funding as a leverage tool. We’re well aware that the transfer payments go from the federal government to the province to provide health and social services for all the people within that province.
However, in almost all cases, provincial support ends at the border of our community. I would say there are almost no services that extend within the community. I say “almost” because there are brief exceptions. It’s usually because it’s a transfer payment from one to another. In our community’s case, for example, we provide youth protection services by a delegated authority. Instead of having the director of youth protection in Montérégie and her staff come into the community, we have our own staff, hired by the community itself, who have delegated authority delivered.
We provide 24-hour services. We pay or contract Montérégie to provide legal services, access to secure transportation and access to group homes, because we don’t have our own group home yet in the community. They pay us for the 24-hour care and services. I would say that is a transfer or amount that comes in.
It is similar to the Youth Criminal Justice Act and the administration of that act. It happens within the community, and, therefore, we have a transfer of funds to us that goes from the feds to the province to us to administer the Youth Criminal Justice Act. That’s another example.
There are not too many more.
How we determine whether it’s in our jurisdiction or Montérégie’s jurisdiction is the postal code — where they live. If they live outside the community, it’s within their jurisdiction.
Home and community care are examples. We are not able to provide any home community care services outside the community because it’s within their jurisdiction. We could theoretically provide it, but there is no coverage of that cost in any way. If we start extending services outside of it, there is no way to recoup those additional expenses, and the federal government won’t pay for those services because it’s outside of our jurisdiction.
We end up with a challenge of having community members who may not be living within the territory of our communities due to housing issues, violence or other issues — who may be living outside the communities and are not receiving services from us. Theoretically, they can receive services from the province, because they are living in that territory, but then you run into the issues of systemic discrimination, language and those kinds of challenges.
So we’re often caught in a challenge of where we can get the accessible services. We have community members living outside who want to seek services inside, but we can’t provide that because we don’t have the additional resources to support that.
Going back to your question, yes, there are transfer payments happening, but they have been allowed to not have to provide those services. How you “allow” or how you stop that from happening is a bigger question to me, because it’s really about leveraging the transfer payments.
It is the same thing with the Official Languages Act. It goes beyond. How do you hold them accountable for both official languages when they have the right to disregard the Charter. I forget the term.
The Chair: The “notwithstanding” clause.
Mr. Montour: Yes, “notwithstanding.” Each time, from Bill 101 all the way up to the latest one, which was Bill 96 — all invoke the notwithstanding clause to support it.
Senator Moncion: We have heard from people in Nunavut, and they had a system in place where services were coming from outside but they had access to translation for diagnosis in 25 communities in the North, not even speaking French or English; they were speaking either in Inuktitut or other languages. It seems to be working for them. It might not be the best, but they have access to health care providers and they are able to communicate.
Do you have access to any of these services through translation or any other or ways of communicating so you can get the services?
Mr. Montour: I would answer in two ways. Part of it goes back to your earlier question. Remember, I’m trying to speak on behalf of all of the First Nations of Quebec and Labrador. Kahnawà:ke is probably the only community in Canada that has its own health centre that is funded by the province. That’s why, in my comments, I was saying that outside, other communities don’t have that same type of resource. Our agreement goes back to a nation-to-nation agreement with René Lévesque back in 1984. It’s unique in that respect. That allows us some leverage to access additional services, including language services. It ends up being at our cost at the end of the day.
There are translation services, just as what happens right now with simultaneous translation. It’s just additional costs, but those are costs that we end up needing to absorb. That’s all.
But are they accessible? Yes.
Senator Moncion: Just to go back to Kahnawà:ke, how is it that you cannot have access to the same kinds of services they have? They were there before this government was in place?
Mr. Montour: I’m sorry; I don’t understand.
Senator Moncion: You said that in Kahnawà:ke, they have their own system in place, their hospital or something like that. They have what they need for services. Why is it that you can’t have access to that in your own community?
Mr. Montour: We can. Kahnawà:ke is unique in that all the other communities across Quebec do not have a provincially funded health centre.
Senator Moncion: I understand, okay.
Mr. Montour: Kahnawà:ke goes back to 1984, which is over 40 years of an agreement that happened in Quebec. It happened right when separatism was happening. There was an agreement that was made in order to allow a health centre.
Senator Moncion: Okay.
Mr. Montour: The issue I’m speaking of is when other First Nations communities in Quebec can’t access or don’t have that same benefit; that is what I’m trying to refer to.
That’s why I was talking about the example of trying to practise within the community itself.
As far as language itself, we can access it similar to us accessing other types of simultaneous translation opportunities. It’s just at our cost.
Senator Moncion: Could you explain the relationship between Quebec and Labrador, because Labrador is supposed to be part of Newfoundland? You were talking about Quebec and Labrador when you were providing your comments.
Mr. Montour: I’ll answer that in two ways. The Kanyen’kéha were initially in the territory from Albany to roughly Montreal or Quebec, to Niagara, which is the Seneca, all the way across — that triangle. We have cousins who are in different parts of Ontario, Quebec and other areas. We didn’t have this imaginary border that went along the river that separated our communities and our families. Those are constructs of colonialism.
It is the same thing with Labrador. The line that is drawn on a map cuts community members who are cousins, relatives and friends of each other in the Innu and Naskapi communities. Those are the communities that are close toward the Labrador border.
When they first created the Assembly of First Nations Quebec-Labrador, they took a decision to allow all of the communities — in that contiguous area of what we now call Quebec now — and that land as all part of the territory that we’re trying to represent.
Now, the Innu and the Naskapi of Labrador are invited to attend our meetings. The challenge is that their funding comes from Newfoundland and Labrador, so they are challenged. Because of their distance from, let’s say, the capital of Newfoundland, they often may not get services related to it. They are caught in a situation where they are at the extreme end of Newfoundland and Labrador — or that province’s territory — and they are at an extreme end of ours. Therefore, they are falling in the greater gap. How do we, as societies, support those communities who have limited accesses in either way? Then we deal with the French language and other issues on top of that, let alone in the communities.
So that’s why they took that decision. It ends up being welcoming, but they’re limited on how often they can come, given their challenges related to Newfoundland itself.
Senator Clement: Mr. Montour, I’m happy to be able to say shé:kon to you because Cornwall is located on the traditional, unceded territory of the Mohawk people of Akwesasne. What you just said in response to Senator Moncion reminds me of the territory of Akwesasne which has Quebec, Ontario and U.S. borders. When we as Ontarians go onto the territory, they tell us these borders were imposed on us. Culturally, we are similar, but we have to operate with these borders. So I understand your answer to Senator Moncion’s question.
I also want to say that I’ve met Dr. Horn — a brilliant person who we are fortunate to have in Akwesasne and Cornwall as well, because the hospital is located in Cornwall. It’s interesting that people have to move away. Other people benefit, but your community loses somebody who wanted to be practising medicine there.
I want to explore a couple of things with you. You talked about social determinants of Indigenous health and I wonder if you could lean into what that looks like exactly. What do you mean by that and how are they different from the other social determinants of health that we talk about in other spaces?
Mr. Montour: Forgive me, I can’t name them all off the top of my head. I know that the National Collaborating Centre for Indigenous Health based in B.C. has had some good literature related to it. When we think about the social determinants of health, we think of poverty, economics, housing, all these other things. What often gets left out from a First Nations perspective is language and the language of our ancestors, and we think of the culture and traditions. We have to remember that the policies of Canada specifically undermined or banned those from happening in many respects.
Right now there is some great literature from the Thunderbird Partnership Foundation. When we think of identity, instead of thinking about holistic health as physical, emotional, mental and spiritual, we should instead think of it as hope, meaning, belonging and purpose. That idea is that if we have those things it still captures the intent of physical, mental, emotional, spiritual, but it looks at it from a slightly different lens. If we have hope, we’re less apathetic and we have less chance for suicide and those types of things. Each one of those aspects plays a part in it.
When we think of social determinants of health, if we’re not talking about cultural aspects and programming, whether it’s on-the-land programming or opportunities to engage in smudging or having institution recognize our cultural practices, then it’s an unhealthy situation. I’ll give you a prime example.
My son is 12 years old. He was born in Hôpital Sainte-Justine. It was my wife in particular that argued vehemently with the administration to allow us to get his umbilical cord. Why that? In our culture, it’s important that we bury the umbilical cord in our land and there is a ceremony that comes to it. Because as people, we need to be grounded in a territory that we’re from and there is a ceremony that is part of that. Instead, the hospital administration looked at it as biohazard waste. It took a lot of argument in order to try to get them to understand our perspective in that way.
Anna-Laberge Hospital has a different approach because of the long-term conversations we’ve been having over time. Whether it’s palliative care, the use of medicines within it, such as smudging and other aspects or things like that, I think hospitals across Canada need to be more open to that idea of applying cultural practices within. Western medicine is seeing more and more value in traditional practices as it relates to healing, as it relates to wellness. A lot of times it is primarily because of belief and identity. We know through meditation and spiritual practices in the church that all of belief has huge aspects in the area of healing.
If our people’s, First Nations across Canada, practices were suppressed, banned or forbidden and we’re trying to almost revitalize those things. In Kahnawá:ke’s case, we’ve had concentrated assimilation for 400 years, as opposed to B.C., which may have had it only 200 or 150 years. A big part is having time to relearn those things, having institutions that acknowledge the systemic discrimination that is embedded in the system because it wasn’t created with our input in any way. Allow change to happen so we could co-design a system where all of our practices and beliefs fit, not just a certain let me call it Eurocentric perception or world view. It has to allow for all our beliefs.
Senator Clement: If I may continue on the culturally safe piece you were talking about, you started that conversation with Senator Mégie.
You just described Hôpital Sainte-Justine and the struggle you had there. What are the solutions around that? You compared Sainte-Justine to another hospital that has better practices. Why does that other place have better practices? What does it take to get to what you were describing where your communities are relearning and other communities are incorporating those learnings into the way that they treat people?
Mr. Montour: A couple of things. Number one is that it requires us to keep fighting, unfortunately to have to say it that way. It requires us to keep insisting, to keep pushing.
The cultural practices can’t be taught by you to teach us how to do our culture. We have to teach you and explain what is allowed, but the system itself is designed by you. The system itself has to create room, has to create space for those things to occur. Now, how does that happen? Some of it is top-down driven, meaning it needs to be incorporated. I recognize that we’re talking about languages and minority languages. That’s the essence of First Nations communities and the challenge of receiving services in institutions that are outside of our communities because that’s the only option we have to get service. Canada can’t replicate all of the services in the province within each First Nations community. It’s impossible. So those institutions have to have some space, whether it’s a required space, in order for us to reclaim those cultural practices.
Senator Clement: Does it have to be mandated? Do you know what I mean?
Mr. Montour: Well, if people are denying that systemic discrimination exists and therefore people don’t want to change the system, then a mandate may be the only thing necessary, right. The federal government acknowledges systemic discrimination exists. But at a federal-provincial level — and it’s not just Quebec, but I’m speaking obviously for Quebec because I can think of other provinces that are in similar situations — if those provinces are not mandated to change, they deny that there is a systemic problem and the will of individuals is not there, so the will of certain hospitals or certain institutions may change as a result of the leadership that’s involved or the relationship that’s done between the First Nations community and that institution, that causes change to happen.
In Kahnawá:ke’s case, even in social services, we’ve been delivering our own social services for 40 years. Other communities are just taking over control of taking decisions. All of the decisions have been made by non-Natives, a non-Indigenous person saying, “This is what you need to do to take care of your children.” Then that disempowers. Anyway, I’m not going to get into it. There is a lack of acknowledgement there on our own practices, that our practices are not good enough.
If it’s not done by individual will and individual desire to change an institution, what other recourse is there except leveraging these things as must-haves?
Senator Clement: Nia:wen, Mr. Montour.
The Chair: I have some questions. There might be some basic questions just to understand the reality. You raised a lot of complex and different issues, some barriers due to jurisdiction and a lack of knowledge.
First, how many communities are we talking about? Just so I have a clear view of the scope of these communities and to understand how services are delivered in terms of health services. Could you give us an overview of the different communities?
Mr. Montour: I think there are approximately 42 First Nations communities in Quebec. If we disregard the Inuit communities and the Cree communities, which are both under separate agreements, then we’re talking about 28 communities. They’re divided, I think, into 0 different nations.
There are the Mi’kmaq communities that are in the Gaspé. There are three communities there. There are the Maliseet communities, which are a little bit southeast of the Mi’kmaq of the Gaspé. They were originally in New Brunswick and in that area of Maine. We know the Wendat were originally around Ontario, and now, of course, they’re outside of Québec City itself, in Wendake. There are three Kanien’kehá:ka communities: Kahnawà:ke, Kanesatake and Akwesasne. Those are near Montreal or on the southern side. The Algonquin communities are more near Ottawa and stretching up into Val-d’Or, and then above them are the Cree. If you go east, there is the Atikamekw communities. There are three there, and they are kind of in the middle of Quebec. Just south of them, around Trois-Rivières, are the Abenaki communities, and there are two of those. The last are the Naskapi and the Innu. The Innu are along the north shore, and there is one community in Lac Saint-Jean. Then north, along what I’ll call it the horn of Labrador, there is the Naskapi. As far as I know, there is one community, but I don’t know about in Labrador itself.
The Chair: I understand there are several communities with very specific needs. What are the common challenges and perhaps solutions to help those communities? Of course, we’re in the context of the Official Languages Committee, so we recognize here that Indigenous languages are vital to the communities. But in terms of English service delivery for your communities in this context, what would be the main challenges? Is it in terms of training for professionals? Is it in terms of culturally appropriate services? If a doctor speaks English, what does it mean in terms of culturally appropriate services, even if it’s not in your own language because of the considerations that you spoke about?
I would like to hear from you about that. What would be the common challenges and, at the same time, maybe solutions? We’re thinking about the federal government, of course, because our goal is to make recommendations to the federal government in terms of this is the way to help these communities.
Mr. Montour: Obviously, it’s difficult for me to speak about specific commonalities for 28 different communities, let alone 42 communities. You kind of touched on the fact that we all have our own realities, and certain challenges that Kahnawà:ke has, even though we are all Kanien’kehá:ka people, are going to be different than the ones that Akwasasne or Kanesatake are faced with.
When I think of minority languages, I think of it in two respects. Number one, English is a minority language in Quebec. Any of the English-speaking communities will be challenged with accessing services outside of the community in English. In most institutions, Quebec created a law or a policy — I’m not sure if it’s a law — that the institution has to have a liaison or support within that institution to provide translation services. The more emphasis that can be created on that, the better, but it is limited — and it’s dwindling due to laws like Bill 96 or others that have English-speaking professionals in the area.
I’ll give you an example. We had to file a human rights complaint three times because Kahnawà:ke was challenged. Different community members were placed in a group home that was French speaking and there was no English-language support, even though on paper, there was supposed to be. The youth, who are already in a vulnerable situation when being placed off reserve, were placed in an institution that was only French speaking and there were no English resources. We ended up needing to send one of our case workers there in order to support that type of service. It doesn’t make sense when it’s supposed to be within the system that allows for that.
That is for English-speaking communities and the challenges related to it. The flip side are those communities that are more remote but are French speaking, and French is predominantly their second language, such as in Atikamekw or Innu communities in particular. They have elders or others who are accessing services in the institution. Theoretically, they speak French, but their primary language is Innu and there is no Innu or Atikamekw language services within the institutions.
In the case of the Atikamekw, they are so remote that their main access to services is in Joliette, which is a distance away. That is where cases like Joyce Echaquan come in. There is little cultural sensitivity. There is little support given. There are no allowances made for having an English person come in.
The federal government, even with their medical transport, we can’t send somebody with a person who is being transported out. So if I have somebody from a remote community and they have to get health services in Québec City, Montreal or Trois-Rivières and they need to have a medevac to out, we’re not able to send a translator or a family member with them in order to help with support or translation services. They’re not covered in the cost. This person is then alone in those types of facilities that may not have an individual that’s ready to provide support, and there is a lack of language or a lack of understanding. Because the epicentres of health are Québec City or Montreal — that’s where the investment happens — these remote communities are sent there.
The Chair: Do you think there is a need for more research and data? Because of the complexity of the situations that you go through, do you think there is enough disaggregated data or that more research should be done to make sure that all levels of government could understand the situation well? What you’re explaining is very concrete, but I wonder if it’s known at the federal government and the different provinces.
Mr. Montour: I don’t think it could hurt, particularly if it’s done in such a way that it is collaborative.
The big challenge I want to stress is that when we talk research, First Nations communities are often researched out. If it’s done collaboratively, though, with the idea that this is why we’re doing it, working together, then I think it has a potential for a good partnership.
We’ve already done a lot of research, too, though, and it may be providing that to you in some particular way. For example, we created a coalition of English-speaking First Nations communities in Quebec. We conducted our own research related to the challenge that we’re facing. How do we get that heard and the recommendations acted on when we’re beating down the same door that doesn’t want to listen sometimes?
I’m more than happy to pass our documents on to Catlin, who can pass it on to you. At the end of the day, though, I absolutely think there are opportunities for partnership. That’s all it is. It keeps taking dialogue. As I said, we have to keep fighting, and we need others — allies — who are ready to help us keep opening that space. We’re asking to build it together.
The Chair: Thank you so much. Of course, if you have any documents, we will welcome that at the committee. You can send that to the clerk, and we will be happy to include that in our information.
[Translation]
Senator Mégie: I have a question given to me by my colleague Senator Audette: Has the passing of the Indigenous Languages Act in 2019 helped Indigenous people access health services in their language? If not, what is missing from the Indigenous Languages Act to provide Indigenous peoples with better access to health care in their language?
[English]
Mr. Montour: It’s hard for me to speak about all of the First Nations communities in Quebec and their experiences.
My gut feeling is limited, if any, meaning with the implementation of that act, I’m not sure if there was a noticeable change within our communities on being able to access services in our own language outside of French or English. I know that some institutions have strived for positive change, creating liaison positions or others. Obviously, the language interpretation would have to come from our communities, so there has to then be a willingness for a community member to work outside of the community to access services that way. That can be a challenge if they’re not in a culturally safe institution.
Because I can’t expect you to learn Kanien’kéha — “you” meaning a person in, let’s say, a hospital — unless you’re already Kanien’kehá:ka;you’re already a Mohawk person. But if we have one of our community members who goes to work for that institution, and that’s not a safe institution for them — they may not recognize systemic discrimination, or they may not have culturally appropriate services that support it, all of the aspects of feeling safe within our work environment. If that’s not there, then it’s very difficult to fill that kind of position.
Now, maybe there are opportunities where we can have funding for a community member to have a shadow that goes to the services, but like I said, the funding doesn’t exist. The criteria from the federal government on how we can use the resources under medical transport or the First Nations and Inuit Health Branch are very strict, and there is not a lot of latitude in how we can use those services in creative ways to ensure linguistic safety or cultural safety when a community member has that.
I guess I would answer it that way. In speaking at the regional level, most of the other communities experience that. I know that a lot of Mi’kmaq end up trying to access services in New Brunswick or Algonquin in Ontario because of those language issues, and they end up paying for that, of course.
When you’re already feeling vulnerable and fearful, you want to at least be able to understand what the physician or professional is saying to you.
[Translation]
Senator Mégie: Thank you.
[English]
Senator Clement: Just one question. You raised the issue around the Province of Quebec not formally recognizing the existence of systemic racism. Do you feel that the federal government does sufficiently recognize the impact or the existence of systemic discrimination?
Mr. Montour: “Sufficient” is a subjective term, of course.
Senator Clement: Sure. Fair.
Mr. Montour: I think there is certainly progress being made. I’ll give you an example.
Two years ago, I was invited to sit on the Minister of National Defence’s Advisory Panel on Systemic Racism and Discrimination and LGBTQ2+ and gender bias within the military.
It was a year-long study that we did that looked at systemic discrimination in the military, and I had an opportunity to talk to service members, to look at the system itself and to look at the policies. Those types of processes, those types of activities, plans and initiatives all try to start changing the system.
We talked about that on that panel, and there were four of us who were members. We were talking to ourselves one day, and we talked about what it’s like if we can imagine a shipload of elephants that came from across the water, and they came to this land, and they created a huge house for elephants, and the house was completely designed with elephants in mind. They designed the ramps to go up. They designed how the floor space was laid out. They designed everything about those houses. And then later on, a giraffe wanted to stay in that house, and they had to duck their head in order to go in, and they had to live within this home that was designed and built by and for elephants. Then other creatures wanted to live there, but it was all designed by and for elephants, so it wasn’t designed for anybody else. Part of it is that you can break a part of a door down in order to try to leave room for the giraffe to go through, but it’s still designed by and for elephants.
Unless we start working together to rebuild the system, it’s still going to have inherent systemic discrimination within it. All of how Canada is built and how the provinces are built did not involve First Nations. We can talk about the Two Row Wampum, and we can talk about the Covenant Chain, and we can talk about nation-to-nation agreements and side by side, but at the end of the day, those alliances aren’t recognized. We are not part of it as far as treaties are concerned and all the treaty agreements, either lived or not lived or followed or not followed. Therefore, we don’t necessarily have a say in the Senate or not, unless we go into that canoe, unless we go into that ship. Self-determination comes into it.
We’re trying to create a mix-matched system that was not built or designed for that. How do we rethink how to do that? That’s where I think of it. If we can’t even say that there is systemic discrimination, there is a problem. To me, Canada has, at least, said that and said, “We want to work on it; we want to fix it together.” It’s going to take time; we recognize this. Even all the conversations about the Canadian Human Rights Tribunal and child and family services, and there is a will to make an agreement to change and make a difference.
If we can’t even have that within the provincial governments — and it’s not just Quebec; Manitoba, Saskatchewan and others are faced with similar challenges. If we can’t even face that, then how do we get to a place of willingness to change?
Senator Clement: Nia:wen.
The Chair: Thank you, Mr. Montour, for your testimony tonight. It is very fruitful. It helps us to better understand, and it tells us how, personally, I have a lack of knowledge that certainly you raised in very constructive ways.
Thank you very much for your presence tonight.
[Translation]
We’re going to suspend the meeting while we welcome our next witnesses.
Esteemed colleagues, we are continuing our study on minority-language health services under the themes of telemedicine and the use of new technologies, and research and evidence.
We now welcome, in person, Sylvie Grosjean, Full Professor and Research Chair in International Francophonie on Digital Health Technologies at the University of Ottawa. By video conference, we also welcome Éric Forgues, Executive Director of the Canadian Institute for Research on Linguistic Minorities.
Welcome and thank you both for accepting the committee’s invitation. Let’s start with your opening remarks, followed by questions from senators.
Ms. Grosjean, you have the floor.
Sylvie Grosjean, Full Professor and Research Chair in International Francophonie on Digital Health Technologies, University of Ottawa, As an Individual: I’m pleased to be able to share a few thoughts on this with you. My research program aims to improve our understanding of issues related to the use and design of digital health technologies in the French-speaking world.
In recent years, I’ve become interested in telemedicine, which, as we know, has rapidly established itself as an essential pillar of health care delivery, but also in the deployment of mobile health care applications, smart sensors and connected objects that may or may not integrate learning or data management algorithms.
I’d like to start by talking about an exploratory study we recently conducted to better understand the needs and expectations of francophones in Ontario. It’s a good example that illustrates the issues that may arise elsewhere when it comes to using health technologies to access virtual care.
We were able to identify some key points to consider for the future of virtual care in general for francophone communities living in a minority setting. Obviously, we found that telemedicine is seen as an opportunity for francophone communities, because it provides access to services in French, particularly for remote communities.
However, while this solution is promising, everyone recognizes that it also raises crucial issues in terms of equity of access. Moreover, despite these technological advances, I’d like to draw the committee’s attention to four points.
The first point is that, in my opinion, we need to have a better understanding of the social and cultural determinants that contribute to appropriation of these technologies by francophones living in minority settings. In my opinion, this is essential to guide and frame the development of this type of technology. We need to be able to identify the services and the type of technologies that communities need to better meet their needs in general.
The second point I’d like to draw your attention to is the lack of visibility of telemedicine services offered in French, the fragmentation of the offering and its necessary integration with existing services. Integrating a telecare or telemedicine offering for francophones living in a minority setting must be part of a pre-existing care offering, not a substitute for it. The adoption of telecare or teleconsultation systems also depends on their successful integration into the basic organization of services already offered to francophones in the territory.
The third point concerns the privatization of telemedicine services and the risk of creating inequities in access. A form of privatization of telemedicine services is happening in response to the nationwide shortage of family doctors. These service offerings are not subject to clear requirements regarding active offer or offer of service in French. As a result, for-profit virtual care could create a new form of inequity in the future for francophone minority communities, who may face unequal access to care in their language.
Finally, the fourth point I want to highlight is the underrepresentation of francophones in the very design of these technologies. Digital health technologies and AI systems are mostly designed for global or national English-speaking markets, particularly in Canada. In the process of designing these technologies, designers don’t always take into account the specific needs of linguistic minorities such as francophones. This means that francophone perspectives and the realities of linguistic minorities are rarely proactively taken into account from the outset in developing these technologies. They may be afterwards, but not from the start.
In the future, the question that will arise with regard to training AI systems is: Will the data incorporate the specificities of minority francophone communities? If the training data for these systems comes predominantly from English-speaking communities, this may limit the performance and effectiveness of the systems for francophones. If we’re not careful, diagnostic and medical decision support tools, or even voice recognition, may be less accurate and not perform as well in French in the future.
I wanted to highlight these four points as a start to the discussion.
The Chair: Thank you very much, Ms. Grosjean. Your presentation was clear and very precise. Mr. Forgues, the floor is yours.
Éric Forgues, Executive Director, Canadian Institute for Research on Linguistic Minorities: Good evening and thank you for the invitation to appear before the committee.
I’ve been asked to speak on the topic of research, evidence and solutions to promote access to health care in the language of one’s choice. The study you are doing is essential for official-language minority communities and for their members’ access to health care services in their language.
A recent study showed the beneficial impact of so-called language concordance between patient and health care professional on the quality of services and health of patients. This point was made by previous witnesses who appeared before the committee. In certain care contexts, language concordance can reduce the risk of mortality and health complications for patients. I’m not aware of any studies that have measured this, but it’s conceivable that language concordance may also reduce health service costs.
These results provide arguments for offering health services in the minority language even in provinces where there are no laws requiring it. However, this type of research is difficult to carry out, as we often lack the required data on the language of the patient and that of the health care professional. If the language in which services are offered has positive effects on health, it seems to me that this should be noted in the patient’s file, just as the patient’s preferred language should be noted.
Despite sustained efforts by the government and francophone organizations over the past 25 years, access to health services in one’s own language remains a challenge for members of minority communities.
In a recent consultation, Health Canada found that a large majority of people have trouble obtaining health services in the official language of their choice; in fact, 80% of anglophones in Quebec and 77% of Canada’s francophones said they had experienced difficulties.
I have focused my work mainly in provinces where language laws apply to the health care sector, namely New Brunswick, Ontario, Manitoba and Nova Scotia. In a study published in 2011, we sought to better understand the social and organizational conditions that foster the provision of French-language health services in a minority setting.
In another study published in 2020, we sought to understand how effective language laws were in the health care sector based on the perceptions of health care professionals and service managers. More recently, in a study to be published this fall, we analyzed a Horizon Health Network initiative in New Brunswick aimed at fostering a culture of active offer of services in both official languages.
To conduct these studies, we generated our own data using surveys and interviews. What has emerged from these studies is that the active offer of French-language health services depends on a combination of factors.
It requires that work be organized taking into account the language skills of health care professionals, which means hospitals must have internal data on employee language skills. It means bilingual employees must be identified in hospitals. It means language training must be provided to employees and social activities in French must be organized if language skills are to be maintained. It also means hiring bilingual employees, designating bilingual positions, raising employee awareness and training them to provide an active offer. Practical tools, documentation in minority languages and technical support for employees must all be developed. One also needs to know the language of the patients who visit the hospitals.
It takes planning and resources for an organization to develop the capacity to offer services in the minority language.
This requires a strong will, commitment and leadership from hospital senior management.
Therefore, to start out as an organization that has the capacity to offer services in French or in the minority language and become one that actually does, providing service in the minority language must be a value and become an integral part of organizational culture. Thank you.
The Chair: Thank you very much, Mr. Forgues, for your opening remarks.
We’re now ready for questions from senators. Senator Mégie has the floor.
Senator Mégie: My question is for Mr. Forgues, and based on his response, perhaps Ms. Grosjean could add something.
You talked about missing data and said that neither the language of patients nor that of health care professionals was noted.
What I know, having practised medicine, is that there is a space for the patient’s language in electronic documents, in the electronic medical record. They only include English or French. Unfortunately, they don’t include a space for other languages. The health care professional must enter the other language as they see fit. The language spoken by the professional who sees that patient is not recorded.
Do you think that would be useful? Do you think the programmers who develop these documents would make an effort to include a space for entering the health care professional’s language, or would there be ethical issues with that?
Mr. Forgues: I talked about one study, and I believe it was Dr. Peter Tanuseputro who appeared before you. Today, I was at a conference given by Dr. Rheaume, who explained how they went about doing their study in Ontario. They had to use administrative data, and they used up to six databases to establish a link between the patient’s language, the physician’s language and the potential impact this may have on the patient’s health.
If memory serves, the language proficiency of physicians is recorded for professional associations in Ontario; they provide a self-assessment of their language proficiency, and then come these gymnastics using several databases to determine language concordance. It gets complicated, and 40% of Ontario physicians do not indicate their language skills in the database. We need to look at other provinces to see what exists in terms of information and language variables for health care professionals. Then there’s the patient’s language.
On Prince Edward Island, the patient’s language is on their health card. It’s right on the card. I don’t believe other provinces have any linguistic designation on the health card. New Brunswick doesn’t, and neither does Ontario, even though, when you request a health card in Ontario, you have to indicate your language of communication with the government. That information could appear on the card. It would make things a lot easier, not just for research, but also for service managers.
Senator Mégie: Would you like to add to that, Ms. Grosjean?
Ms. Grosjean: I would clarify that, because we ran into a problem when we looked for that data. We tried to distinguish two things. The francophone community is undergoing a transformation. It’s changing. Some francophones were born in Canada, but there’s a sizable francophone community resulting from francophone immigration. They may want to receive health services in French, but it’s not necessarily their first language. In terms of the data, we also ask about language spoken at home, but we ask what language they want to receive health services in. That’s how we know if these are people who speak French at home and want health services in French, or if they’re people who speak other languages and want health services in French because that’s the language they’re most fluent in outside the home. I think that’s important information given the changing profile of francophone communities.
Senator Mégie: Thank you. My other question is for Ms. Grosjean. I still see a barrier when it comes to technology use in health care. Maybe you and your team will eventually find the solution to overcome the digital literacy barrier. People are often told to go to a particular website and click on this or that.
The problem is that the language used can be impenetrable for some people, depending on their generation. Have you and your peers talked about some way to remedy that?
Ms. Grosjean: I’m working on technology development with the Ottawa Hospital. One thing we’re developing is a platform that will enable people with Parkinson’s disease to access health-related advice. We know that people with Parkinson’s disease tend to be older and not necessarily comfortable with technology. The disease itself can interfere with using technology. We decided to adopt a participatory, collaborative approach. Ever since we came up with the idea for the technology, before it even came into being, we started by asking patients for their expertise as people living with the disease. That way, we were able to integrate those issues from the beginning of the development process. We addressed things like terminology they didn’t understand and how to guide and support them in using these technologies. We developed an approach that focuses on participation and co-development so we can integrate knowledge from people living with a disease and make them part of the process. That also allows us to integrate people with low digital literacy. We have to develop these tools with those users in mind.
Senator Mégie: Mr. Forgues, you talked about the provinces where you did your studies, including provinces that have linguistic concordance laws.
Is there a particular reason for that, or is it just because it made your research easier?
Mr. Forgues: The purpose of our study on the effectiveness of language laws was to examine compliance with New Brunswick’s Official Languages Act, Ontario’s French Language Services Act, Manitoba’s equivalent legislation and Nova Scotia’s law on services.
By definition, we had to go to the provinces that had legislation governing the health sector. On Prince Edward Island, it only applies to the telehealth line, which has to offer service in French, unless that has changed recently.
In looking at these places that had legislation, we wanted to ascertain how well health professionals understood their obligations and whether they felt equipped to offer services in French. We looked at whether, all things considered, organizations took adequate steps to ensure compliance with the legislation by helping them, training them and informing them. The obligation does not lie with specific individuals, but it does lie with institutions. There’s a whole organizational context that needs to be established to ensure services are offered in French or in both official languages.
The interesting thing about linguistic concordance studies is that they produce arguments for going to provinces that don’t necessarily have a language law that applies to the health sector. We have these studies that show real positive impacts where there is linguistic concordance, which means that the health professional speaks the patient’s preferred language. There can be arguments based on economics, health and quality of services. That helps organizations implement the means to provide francophone patients with services in their language of choice.
Senator Moncion: My question is about governments’ desire to make a genuine active offer in the minority language. Are provinces willing or unwilling?
Ms. Grosjean: That’s an interesting question. We did a literature review for the Consortium national de formation en santé, the CNFS, last year. We looked at telemedicine and active offer specifically from a pan-Canadian perspective. Things are very different from one province to the next. What we noticed is that provinces might want to do this, but everything depends on how it’s implemented.
Often, the burden lies with the francophone patient, who must seek out services. There’s a little button somewhere that says, “For services in French, click here”. The patient is the one who has to do the work to obtain the service.
The offer is out there, but francophones who want that service have to work for it, in a sense. They have to seek it out, whereas all the organization has to do is create a little button that says “français”. I think organizations can do better, because what they’re offering is translation services, but that results in a delay in getting service. In other provinces, there’s an active offer. It varies a great deal, and the implementation is very different from one province to the next.
Senator Moncion: Thank you. We talked about the little button. Now, let’s talk about setting up telehealth in each province when we could instead set up pan-Canadian telehealth that would be available to any patient, whether they’re francophone or anglophone, who wants access to a doctor. Is anyone looking at that? Is it realistic? Or is it funded at the provincial level because of the availability of people who can provide services in both languages?
Ms. Grosjean: I’ll take the time to answer that. Last year, we did an activity with Franco-Ontarians to imagine virtual care in 2050. We had them picture themselves in the future and talk about what they wanted. The issue that emerged was fragmented availability of services, meaning that there are services and very interesting projects happening, but services are fragmented. The study participants said they needed help to navigate service availability. Many of them imagined being directed to a central portal where they could navigate to a telehealth service depending on their needs. That doesn’t exist right now. The offer of service is fragmented.
If we could help minority francophones navigate a French-language telehealth service from a central point of contact, that would really be the stuff of dreams, something worth pursuing for the future, especially since we know that, now, people’s point of contact is their family doctor, who enables them to navigate the system. We know how many people no longer have that point of contact. We have to help people navigate a health system that’s sometimes fragmented when it comes to the availability of telehealth, and I think having a central point of contact would be extremely beneficial.
Mr. Forgues: I would add that New Brunswick’s Commissioner of Official Languages produced two reports. I don’t know if I’m going to talk about the same thing as Ms. Grosjean, but part of telehealth is services offered online. Those services are available in New Brunswick, and people really rely on them. The commissioner noted that, in some cases, there was no active offer, or wait times were longer for francophones than for anglophones, or service providers asked patients who began by speaking French if they could speak English.
The commissioner identified a number of problematic situations. To answer the question, we have to look at whether the companies the government hires as subcontractors to address crisis situations or dire needs in New Brunswick’s health care system are from other provinces or other parts of Canada.
The government hires companies that offer these services but don’t necessarily have a good grasp of the province’s official languages legislation and the obligation for active offer in both official languages. Some awareness work needs to happen, because the circumstances vary from one province to the next. That’s one thing.
As to governments’ leadership and desire to do this, what I’ve noticed is that that plays a crucial role not only within a given province but also within an organization or health authority. Leadership at the senior level plays an important role in everything that happens and everything that gets implemented. I think that’s where researchers and various partners have a role to play in disseminating the findings of various studies. That dissemination has to happen in conferences and academic contexts, but it also has to happen with stakeholders and decision makers. There may be a disconnect there, a knowledge transfer that isn’t happening well enough. I would say that, in terms of access to data and research development, there has been some development of research capacity, but there’s still a lot of work to do. People still have a lot of trouble accessing data, but the other thing to prioritize is information transfer within the community. Those of us who believe in this talk amongst ourselves, but we also have to talk to people who aren’t already on board. There’s a lot of communication that needs to happen.
Senator Moncion: The other really troublesome thing going on with our system right now is the doctor shortage everywhere. When people don’t have a doctor, they take the one who’s available, no matter what language they speak. Francophones often end up with anglophone doctors and have to receive services in English. That’s not counted. You were just talking about health cards that indicate whether people want to receive correspondence in French or in English, but they don’t indicate whether an anglophone doctor provides service to a francophone patient. There’s a whole bunch of data that isn’t used, or isn’t accessible, rather, because that information, which could easily appear on a health card, isn’t available.
Governments have to choose between putting their heads in the sand and saying, “We don’t have any data, so we’re not going to offer services because we don’t know,” and saying they might do it at some point to find out what our real needs are.
Ms. Grosjean: We need to consider that question for the future, too, because we know that AI systems are trained on the data that we produce, that our hospitals and provinces produce. I think there’s a very important question we need to ask ourselves now. These systems are going to operate within our health systems and enable us to develop technology for predictive and preventive medicine. What data do we want to train them on? I think we need to think hard about how we can identify and better identify francophones within the existing data. How can we try to better identify francophones’ specific health needs, home care needs and so on? I think that, until we have robust francophone databases, there’s going to be a risk around training AI systems, because they’ll be trained on available data, which is incomplete. That could have significant consequences for people’s health, such as delayed diagnoses, inappropriate treatment plans and so on.
Mr. Forgues: If I may, I would advise caution before getting into technology or AI-based solutions. We would have to make sure it was also adapted to bilingual services in both official languages.
Yes, now that we know that language concordance has positive effects on health and the quality of services…. The research is quite recent, from 2022 or 2023. You invited Peter Tanuseputro to come and talk about it. Dr. Michael Reaume could also be invited to talk in depth about it. We can no longer plead ignorance. Now we know that it has an effect. I think it is now time to incorporate the information into a patient’s file. We have the patient’s language, and we should have the language of the health professionals — the doctors and other staff members. That way, we could also see from the patient’s file whether services were offered in the patient’s preferred language. It becomes a management tool.
At a conference I attended today, Dr. Denis Prud’homme, Rector of the Université de Moncton, was part of the discussion. He said that the United States is way ahead of Canada because the situation there is much different. It’s much easier in the U.S. to record this information. We cannot do it here, despite the fact that we have an Official Languages Act. They do it to avoid lawsuits based on a misunderstanding about the quality of health care services offered. The context is different, but it shows it can be done. It’s a question of will.
Senator Moncion: Thank you.
Senator Clement: Thank you, Ms. Grosjean and Mr. Forgues, for your testimony and your work. It really helps us.
Ms. Grosjean, the last two points of the four you listed got me thinking. You mentioned for-profit, privatized services that may not adequately incorporate the active offer. Could you give us a few more examples and some possible solutions?
The fourth point goes back to the answer you gave to Senator Moncion about the under-representation of francophones in artificial intelligence, in fact, pretty much everywhere. Black and racialized people are very concerned about that, not just francophones. We aren’t helping to develop these programs. Do you have any possible solutions?
Ms. Grosjean: Regarding the first point about the for-profit telemedicine system, in our literature review, we did find that there was no active offer. It is up to patients to request it, and if they don’t, they cannot access the service. We came to the conclusion that we should perhaps develop a shared standard that imposes a minimum. Should it be a Health Canada regulation? I don’t know, but something can be done so that we have a shared standard that imposes a minimum. We’re not calling for all doctors to be bilingual, only for baseline access to service in French.
Senator Clement: For all services?
Ms. Grosjean: Mainly for telemedicine, since that’s the most commonly used service right now. Teleconsultation services have been increasingly used since the pandemic. When I say teleconsultation, I mean having contact with a doctor who can advise me whether I have a cold or I need to find out something specific. Quite quickly, I can see someone through teleconsultation if I don’t have a family doctor. Particularly for services provided by private clinics, we should perhaps impose a minimum standard for the active offer or available care in French.
Senator Clement: Privatization creates a risk.
Ms. Grosjean: Yes, it creates a risk of unequal access to health care in the patient’s language. Some clinics will choose not to offer service in French because it may be too expensive for them if they don’t have a bilingual or francophone doctor or can’t find one. Training will become an issue at some point. Currently, there is a major risk of creating unequal access to service in French. That is definitely a real risk.
To answer your second question about the design of these technologies, I would say that, in today’s market, we sense that companies are looking to carve out a place for themselves by developing their technologies and selling them to hospitals and provinces. Therefore, we should demand a minimum in terms of how the technology is designed. Have they incorporated minority voices, whether linguistic or otherwise, in the design process? We need to ask them how they have incorporated these voices.
I think we should also take precautions in terms of the all-important design process. People don’t all approach health and disease in the same way. There are cultural, social and linguistic components, but language goes hand in hand with the social and cultural aspect. Not everyone approaches their health or their bodies in the same way, and not everyone expresses pain in the same way. These aspects need to be taken into account, even in the design of the technologies. Technology design today is based on a kind of “technosolutionism”. There’s a belief that it cures all ills. However, it needs to be seen from a socio-technical perspective, where the social aspect is incorporated into the technology’s development. That also involves taking into account minority voices in the design process.
Senator Clement: Thank you.
Mr. Forgues, I would like to go back to Senator Moncion’s question. We talk about a housing crisis, but there is also a crisis in the health care system. It is hard for people everywhere to find someone to provide health care services. As francophones, we often say, “If the wait is too long, I’ll find services in English.”
Do you have any studies about the longer wait times for francophones or new Canadians whose first language is French in accessing services? Do you have data showing that people get discouraged and stop asking for services because they just want medical treatment?
Mr. Forgues: There are studies. I could send you references that show that this kind of situation can occur. I have not done such studies myself. Interestingly enough, when people request a teleconsultation service, they can press a button for service in French. Usually, the message is recorded. Perhaps Ms. Grosjean could address this, but I see potential in analyzing the service offered based on the language requested and the wait time that results from choosing French instead of English. What’s useful about technology is that it leaves a digital trail. If we had access to the data, we could analyze it. I really see significant potential there.
Given the labour shortage, we often hear that it is hard enough to find nurses, let alone ones who are bilingual. Nevertheless, providers have obligations to fulfill and they have to find ways of doing that, even if they hire an anglophone. Getting the language profiles of staff would be a step in the right direction. Knowing the staff’s language profiles would help the provider take steps to ensure that at least one team member was bilingual and could offer services in French. Not everyone needs to be bilingual for there to be an active offer. The active offer culture requires training. People need to be reminded that they can ensure an active offer even if they are unilingual, because there are tools. If I can’t provide service in French, I know that I have designated colleagues who can do it. It is complicated in practice, because they might not always be there or their fellow team members don’t want to bother them. There are all kinds of reasons for not ensuring an active offer, even though providers should.
Another risk that came up about teleconsultation is the fact that services available via the internet or telemedicine fall somewhat outside the institutional context. They take place in a virtual world that is not necessarily attached to a designated institution, if we’re talking about Ontario, say. Telemedicine with no attachment to an institution takes place in a bit of a vacuum. Language obligations could be lost in the shuffle in places like Ontario and Manitoba, where designated institutions must ensure the active offer of services in French.
In New Brunswick, the active offer of services has to be in both official languages. They use companies that may have worked in Ontario, but when they move to New Brunswick, something could get lost.
I’m not sure whether I’ve answered your question.
Senator Clement: That is a valid point. On the internet, patients are a bit disconnected from their institutions or feel as though they are. That is a valid point. I appreciated your answer about the variety of things we need: bilingual positions, designations, leadership, policies and so on. I understand where you’re coming from.
Ms. Grosjean, do you have anything to add?
Ms. Grosjean: I think it is absolutely true that the telemedicine services provided are not necessarily attached to other services or hospitals. That raises the question of continuity of care. You have a 15-minute consultation with a doctor, and then maybe two months later, your child gets sick and you have another teleconsultation. Will the same doctor be available at that time?
It’s important to think about continuity of care. We also know that the profile of francophones in minority communities is often that of an older population with more comorbidities. Research has long shown that the health profile of some people could put them at a disadvantage because of a lack of continuity of care. Their health care is intervention-specific and doesn’t take the broader picture into account. I definitely think that is also a risk.
Senator Clement: Thank you.
The Chair: Now it’s my turn to ask you a few questions, Ms. Grosjean. Of the four elements you identified, Senator Clement focused on the third and fourth. I’ll focus on the first and second.
Can you tell us more about the social and cultural determinants of the use of new technologies? My question could also be for Mr. Forgues. In terms of studies, information and data, are we well equipped to understand what these determinants are and how to take them into account when using and implementing telemedicine based on new technologies?
Ms. Grosjean: This is an important point for me because I’ve started a research project funded by the Consortium national de formation en santé. I tried to find data to document access to health technologies for francophone minority communities. I also tried to identify the profiles of users of these technologies, and I ended up with very fragmented data. New Brunswick produced some interesting things, but I had almost nothing on the other provinces.
There is very little right now.
I went to see other minorities in the United States to learn about their issues and identify working hypotheses I could begin to work with. Further study is needed to understand the needs of communities in Manitoba, Alberta, Quebec and New Brunswick. They aren’t the same, because the geography and population profile aren’t the same. What technologies are we targeting? Is it home care with telecare, or is it chronic diseases and follow-up services at home? We know very little about the needs on the ground and the directions to take, because developing technologies is very costly. It would be useful to obtain more data, for example on home care, palliative care, cancer treatment, chronic diseases, and so on.
However, there’s a lot of data on the social determinants of health in general for francophones. I’m sure my colleague can talk about that. This isn’t the case when it comes to the use, suitability and needs of digital health care technology.
The Chair: Do we have any data to support what you said at the outset, that the francophone community is changing greatly and constantly, particularly because of immigration, which means that the profile of francophones today is very different from what it was a few years ago?
Mr. Forgues, would you like to speak to this?
Mr. Forgues: Language isn’t recognized as a determinant of health.
The Chair: Do you think it should be?
Mr. Forgues: There are studies that tends to show this, such as Louise Bouchard’s, which point in that direction. The recent studies I was talking about also tend to show that the language of service would be a determinant of health. We’re even starting to be able to measure it. I think there are good arguments in favour of recognizing language as a determinant of health. Studies are beginning to show this.
The Chair: Okay.
Ms. Grosjean, the second point you raised is the lack of visibility and the fragmentation of the offer. You talked about integrating this new technology into existing services and how to guide patients to these services. You didn’t talk much about what this means in terms of training for health care professionals, not only in terms of language, but also in the use of these new technologies. Should current training for health care professionals be adapted to include mastery of the use of new technologies?
Mr. Forgues, is there any data on specific needs and the ability to master these tools?
Ms. Grosjean: It’s true that integration was raised by the participants in our research. There’s a fear among francophones that in-person services will be replaced by remote services. This reconfigures the use of teleconsultation. Many studies have been done on how teleconsultation transforms communication between the patient and the physician. Teleconsultation doesn’t allow for touch or feel. There’s concern about the physical examination, which needs to be carried out differently. We’ve worked with professionals to understand how they adapted their work with patients when they couldn’t touch the patient, so that they could still feel and get sensory feedback to help them with their clinical reasoning.
Training courses are being set up in medical schools. Since the pandemic, the University of Ottawa has developed a program to support physicians in telemedicine. However, it goes beyond physicians. All health care professionals today, whether nurses, physiotherapists or speech therapists, are encouraged to use these technologies. This kind of training needs to feature more prominently in the various curricula.
Work in telemedicine shows this, whether in sociology or other fields: it reconfigures health care work. Work was done on telemonitoring cardiac patients and telemonitoring cancer treatments with colleagues. The work of nurses is no longer exactly the same. For example, for telemonitoring of cardiac patients, the nurse will receive a lot of data. The patient will have to collect data at home. There is a lot of work in reading and interpreting data and communicating with the patient by phone. Health care work is also being reconfigured. Health care professionals will need support to transform their health care practices. They will have to work much more with data. This will be part of the training that will have to be put in place to help professionals work with this data while providing personalized, adapted and human care, because the data can be cold, and it can be worrisome for a patient to see red lights on their sensor when they don’t understand them. Someone at the other end of the phone will have to explain that it’s not serious. Those aspects also require work.
The Chair: Mr. Forgues, in your opening statement, you talked about a set of factors that promote the active offer of health services in French, such as the language skills of health professionals, internal data on employee language skills and the identification of bilingual employees. You also mentioned hiring bilingual employees. In terms of data research, does Health Canada or the federal government take all these considerations into account? Active offer is at the heart of the implementation of the Official Languages Act. Do you feel that these different considerations are being taken into account? If not, do we need more data or research to make the case for the importance of these different factors?
Mr. Forgues: I often use this metaphor when I talk about linguistic concordance having positive effects on patients’ health: If it were a drug, we’d have to see how to manufacture it. Linguistic concordance is manufactured within an organization. As you said, it’s a combination of factors. We need to understand how all kinds of tools can be brought together within an organization without success, in other words, without people necessarily making an active offer. It’s really a question of taking a global approach and considering all these factors, but also of trying to ensure that a culture of active offer develops — in other words, of moving from the ability to make an active offer to a willingness to make an active offer. This refers to this set of factors that can affect an organization, starting with leadership, with a signal that is sent at a certain level.
Hospitals are managed by the provinces. Health Canada can surely equip professionals to promote understanding and research to understand what facilitates active offer. However, this remains a provincial responsibility. It’s a leadership role that needs to be exercised at the level of provincial governments, health authority senior management and health networks. There is a know-how to be developed within organizations.
There’s no magic formula. There’s no one factor that’s more important than another; you really have to take a systemic approach and make sure that the will is expressed and exercised. There also needs to be symbolic recognition of linguistic and cultural diversity through symbolic gestures. There could be a day, for example, to promote services in French or recognition of the French fact. There are symbolic gestures that can play an important role.
The Chair: In the context of socialization and language enhancement activities, the arts and culture sector and artists in our community certainly have an important role to play. I appreciate your response.
Thank you, Ms. Grosjean and Mr. Forgues, for your statements and enlightening answers, which will help us as we continue our work.
Colleagues, for the third part of our meeting, we will return to the theme of vulnerable communities.
We are pleased to welcome, in person, Ms. Sylvie Sylvestre, a French-speaking caregiver from Ontario.
Good evening, and welcome among us. Thank you for agreeing to meet with us. We look forward to your opening remarks. We’ll then open the floor to questions from the senators.
Sylvie Sylvestre, Caregiver, As an individual: Thank you for the opportunity to share my story as a caregiver. My name is Sylvie Sylvestre, and I was a caregiver for my unilingual French-speaking parents for 10 years; there were 200 kilometres between my town and theirs in northern Ontario.
During these 10 years of caregiving, I helped my parents access primary care, home and personal care, mental health services, long-term care and palliative care.
For 7 of those 10 years, I travelled every other weekend to care for my parents, as my mother was in long-term care for seven years while my father was at home.
My father resided in long-term care for 10 months, in the same room as my mother.
My caregiving role ended a year and a half ago. I have to tell you that accessing health services in French for my parents was very difficult and presented many challenges.
It took a lot of my energy and time, but I was dedicated to ensuring they had access to quality health care services in their mother tongue, especially when there was no active offer of service in French. My role as a caregiver was difficult in itself, but the added task of ensuring access to services in French made my role even more challenging.
My parents were vulnerable and unassertive, so I was forced to be assertive on their behalf and educate health care professionals about the importance of health care services in their mother tongue and active offer. Some refused to believe me and continued to speak to my parents in English, but slower, louder and as though to a baby. I had to change my vocabulary and stop saying that my parents only spoke French, but instead say that my parents only understood French.
It wasn’t easy to make them aware of the importance of French services and active offer, but when people didn’t understand, it was impossible for me to do nothing.
I’ve experienced many challenges as a caregiver and there have been some very difficult moments. I’ll tell you about two where I saw the impact of language barriers.
My 75-year-old mother went alone to the emergency room at a hospital designated under Ontario’s French Language Services Act and called me afterwards saying: “I went in for acute abdominal pain and I think they told me I have an ear infection. I’ve been given medication, I don’t know when to take it, and I’m not sure when I should follow up with my family doctor.”
The other story is about my father, when I was at his bedside when he was admitted for six days to a cardiology unit, again, in another hospital designated under the French Language Services Act.
I spent 12 to 14 hours a day at his bedside and, unfortunately, saw the lack of French-language services.
After the first two days and after trying to get services in French — with very little success — I stopped asking for them. I no longer had the energy to assert myself and ask.
On the fourth day of his hospitalization, my father developed delirium: He had become a mechanic in his garage again and was trying to leave the premises, because he had to go and repair a broken-down heavy-duty truck on the side of a road. I tried to keep him in his room. I had to manage the situation by interpreting for the staff. I was exhausted. They offered to tie him up in bed. It was difficult, but I agreed to a protective bracelet so that the elevator doors would lock if he tried to get in. By evening, I was really exhausted; I had to go and rest, so I had no choice but to ask the staff to tie him to his bed.
Every evening, for six days, before leaving for the night, I made sure there were French-speaking staff, because he wasn’t always paired with French-speaking staff. On the sixth day of his hospitalization, a geriatrician came to assess him, because for the past four or five days, he had been diagnosed with Lewy body disease, which is a form of neurocognitive disorder. With my support as an interpreter, the diagnosis was ruled out. These are just a few of many examples over a 10-year period.
I would have needed to be made aware, not by myself but by others, of the importance of French-language services, active offer, making sure my parents’ linguistic identity was known, and having a continuum of care in French. Of course, I would have needed French-speaking staff to be there, which is more and more of a challenge. Thank you for listening to my story. I really appreciate it.
The Chair: Thank you very much, Ms. Sylvestre. We are the ones who are grateful. Thank you for your generosity and courage. Thank you for your commitment to your parents. You are a very inspiring person, even beyond the language and health care issue. Thank you for being here. We will now move into the discussion with senators.
Go ahead, Senator Mégie.
Senator Mégie: Thank you, Ms. Sylvestre, for your very touching statement. You know, your parents would have been part of my client population back when I was practising medicine. I understand everything you just shared.
I have a question for you about the need for interpretation services. The committee met with a Manitoba doctor on May 6. He said that when a patient’s caregiver or family member assumes the role of interpreter, it can result in errors, omissions and stress since they don’t have the necessary training. Do you have training as an interpreter, or do you think it would be helpful to have one? Would it have helped with your level of exhaustion?
Ms. Sylvestre: I don’t have any training as an interpreter, nor do I have any health care training. Now, I’m more aware of the risks I exposed my parents to when I was serving as their interpreter. To begin with, they didn’t have any privacy when I was with them for their appointments. My father may have wanted to say things he didn’t say because his daughter was there.
Did I interpret what they said correctly? I wonder. The first time I went with my mother to interpret for her, I was 16 years old. I felt smart. In French, my mother said to me, “J’ai mal aux reins,” meaning her lower back hurt. In English, I told the doctor, “Her kidneys hurt,” because the word “reins” can mean kidneys. Now I know that was an error.
Did I make other mistakes without realizing it? Now I understand the importance of not serving as an interpreter, of using a professional. With a professional interpreter, my parents would have had the privacy they would have liked. Oftentimes, when I was interpreting for my father, I would say what he said, but then I would add my own comments. I was putting my perception on it, and I imagine he didn’t understand any of it. When I did that, I wasn’t being fair to him either.
Senator Mégie: I see that you had to do a lot of travelling. Did you get the sense that your parents were twice as exhausted when they got to the doctor’s office as they were before leaving? Is that something that may have affected the doctor-patient relationship or the answers they gave the doctor? Did you get that sense?
Ms. Sylvestre: No, not necessarily. Not from my parents, anyways. I have to say that, yes, it was demanding considering that, in Chapleau, we went six or seven years without a family doctor. All we had were locum doctors. It was tough.
As far as travelling back and forth was concerned, I would keep about half my vacation every year so I could go with them to their medical appointments. I had to drive either 200 kilometres and bring them to Timmins, or 200 kilometres and then another 400 kilometres to Sudbury for appointments with a host of specialists. It was a lot.
I didn’t see them show their exhaustion or reluctance. That was me.
Senator Mégie: There is a lot of talk about telemedicine. Do you think, in retrospect, it would’ve helped you when you were interacting with the health care system on behalf of your two parents?
Ms. Sylvestre: It did help. My father was a fan of telemedicine, especially in the winter. When he didn’t have to travel for an appointment, he would say, “Oh, wow. I went to the appointment, and it took only a half-hour today, instead of a day and a half.” There were no guarantees, though, that the specialists they saw would speak French. I still had to travel to interpret for my parents, which I shouldn’t have had to do, or I had to make sure that the person helping with the telemedicine process was a French-speaking nurse. I always had to make sure.
Senator Mégie: Thank you.
Senator Moncion: Thank you for sharing your experience. It’s something people have to deal with, especially in northern Ontario, where they have to travel long distances. From Chapleau, you have to drive 200 kilometres to get to Timmins, 300 kilometres to get to Sault Ste. Marie, and 400 kilometres to get to Sudbury.
You mentioned the risks of assuming the role of interpreter. What other lessons have you learned as a remote caregiver?
Ms. Sylvestre: I would say taking care of me. It took a burnout and four months off work to get myself together and change what I was doing. I still went every second weekend, but I learned I couldn’t spend whole weeks there, because it was worse for me. When I was in Chapleau, I would go over three times a day for a week, which was much more tiring than driving 200 kilometres there and back on the weekend. Before the pandemic, I would take my mother out of long-term care and bring her home to be with family. I had to have a burnout in order to learn. I learned to be assertive when I saw certain staff members who were causing linguistic insecurity. I asked specifically for home care services in French.
Finally, they hired someone bilingual. I got in my car and drove all the way there for the first visit. She came in and spoke to me in English. I said, “I was told that you were bilingual.” She said, “Yes, but I’m more comfortable in English.” I replied, “No, no. My father is here and he has to be in on the conversation. We have to speak French.” At times, it was hard to be assertive, but I did it for my parents. When services weren’t offered, I demanded them. It was hard, but I saw many who didn’t.
Senator Moncion: The fact that you did all that driving up north in the winter came with other risks. Travelling in that kind of weather is risky. I assume you didn’t drive when it was snowing or freezing rain. Did you?
Ms. Sylvestre: No, and I didn’t drive at night, which meant that the weekends were very short in the winter. It was hard to bring my mother back to the centre sooner. I had to leave earlier so I could get home before it got dark.
Senator Moncion: Did you receive any compensation under the program for patients up north who have to travel for health care?
Ms. Sylvestre: I heard about it.
Senator Moncion: I’m sure it’s not available to everyone, but I know that grants are available to patients up north who have to travel outside their region for health care. Are you saying you aren’t aware of the funding?
Ms. Sylvestre: Are you talking about the travel grants?
Senator Moncion: Yes.
Ms. Sylvestre: Yes, I’m aware of them, but I think the funding is for the patient, not the caregiver.
Senator Moncion: What we’ve noticed is that, when the spouse is the caregiver, their own health declines when they are taking care of the sick spouse. In your case, your health deteriorated for a period of time.
Ms. Sylvestre: Actually, my father was also taking care of my mother before she went into long-term care. In three weeks, my mother went from acute care to respite care to long-term care. I didn’t go to see her as often then.
I didn’t realize the impact it was all having until my father experienced burnout. At 79, he was still working full time as a mechanic while taking care of my mother, who got up during the night a lot. She wasn’t taking her Parkinson’s medication properly. She started having more and more falls and getting hurt.
That’s when the nurse practitioner called me and said, “Sylvie, your mother’s not going home. She’s going into long-term care. Your father just suffered from burnout too.”
Senator Moncion: That’s a familiar story. Thank you, Ms. Sylvestre. I commend you for your courage.
Ms. Sylvestre: Thank you.
Senator Clement: Ms. Sylvestre, I want to echo what the chair said: You are inspiring. Everything you said sums up what we’ve heard during our study regarding the lack of active offer, the fragmented availability of services and the exhaustion of families.
At one point, you said you weren’t asking for anything anymore because you were out of energy. That is very much in line with what we’ve heard from other witnesses.
My dad is 102. It’s wonderful, but a lot of the responsibility falls on my sister who lives in Montreal. It’s hard for her. It’s hard for the whole family. Thank you for sharing your story.
I have two questions. You let the media interview you, and you were very eloquent. Did anything come of those interviews and your desire to educate people?
Ms. Sylvestre: I didn’t realize the impact telling my story would have when I was first interviewed by Radio-Canada. The reporter spent five hours with my mother, my father and I. I knew that people’s accounts and patients’ stories were important, but I didn’t realize the full impact until the story aired. In the days and weeks that followed, people would stop me on the street and give me a hug. They told me that they were moved by my story. They would say things like, “I’m going through the same thing. I need to talk to you. Can we grab a coffee? I need your advice.”
I understood how important telling my story was, and I kept sharing my experiences and doing interviews with Radio-Canada. I started giving talks as a caregiver. I spoke at Université de Hearst, and I’m here today.
Senator Clement: It helps us come up with ideas as we try to identify what the needs are and help people.
That brings me to my second question. It’s about French-language services for caregivers. Are there any help networks in French for you? For the people who stop you in the street to give you a hug? Are there any francophone support networks?
Ms. Sylvestre: Very few. In many cases, support groups are bilingual. We all know how fast a bilingual support group turns into an English support group. I didn’t pay attention to them because they weren’t for me.
I worked with Family Councils Ontario for long-term care family councils. At the beginning of the pandemic, we had virtual family forums. I took part in the first one. There were four of us across the province. I was supposed to take part in the second one, but it was cancelled because I was the only one who signed up. The same thing happened with the third and fourth forums. I was the only one, so they were cancelled.
They approached me to ask whether I would be willing to create a French-language network if I was given supports. Four years later, I still head Family Councils Ontario’s francophone network. We are a small group, with 20 or so members. We meet every month, and we help each other with our family councils.
I’m still on the family council at the Bignucolo Residence in Chapleau. I’m the outgoing chair. I have double the workload because it’s important to me to hold a meeting in English and a meeting in French. I don’t want to have bilingual meetings because they take twice as long or turn into English-only meetings.
I used the services of the Alzheimer Society in my city of Timmins, where I was served in French. I worked with an anglophone social worker, but I made that choice because I needed it.
Senator Clement: Thank you for your testimony.
The Chair: Thank you. Listening to you, I can see that you took on a lot of responsibility to make sure your parents received adequate health care. You shouldered that responsibility at the expense of your own health.
Given that the services are provided by the provinces, what do you think the federal government could do to help caregivers such as yourself?
The Canadian Centre for Caregiving Excellence wants to put forward a national caregiver strategy and establish tax credits to recognize that work.
Do you think that’s a good idea? Would a national strategy to recognize caregivers, define their needs and encourage provinces and territories to give them resources help improve the situation of natural caregivers such as yourself?
Ms. Sylvestre: Yes, indeed. We need a national strategy in order to take leadership and work with the provinces and territories to make progress. For my part, as a natural caregiver, I also need an active offer because what I had to do was not recognized, and I had a lot on my plate. So, yes, indeed.
The Chair: In your opinion, what are the three most important parts of such a strategy that would have helped you a lot?
Ms. Sylvestre: I think raising awareness among health professionals about the important role we must all play, whether we are francophone or not. What could be done? It could be as easy as wearing a pin that says, “I speak French” or having signs for people entering a facility to identify it as having a bilingual culture. I would have been much more comfortable with that as opposed to being greeted with my father by, “Roger Sylvester, it’s your turn.” What is that?
The idea is to ask someone what their first language is and in which of Canada’s official languages they are most comfortable receiving services. As a natural caregiver, I am more comfortable receiving services in French and communicating with other natural caregivers who are francophones. A lot of awareness raising is needed for people to stop thinking that it’s up to me to ask and for them to stop blaming me. I remember once I was given a form. My father had to sign it. I said no and that I needed the form in French. What’s more, I knew I was at a designated facility. They blamed me, saying: “But you seemed to be in a rush.” Did they see me walking with my mother? I have to hold on to her while she uses her walker. I am never in a rush. They made me feel guilty for asking. That would not have been the case if there had been an active offer.
Senator Moncion: I have a question about the work you are doing right now across the province. Is it voluntary?
Ms. Sylvestre: Yes, it’s volunteer work.
Senator Moncion: You are very altruistic, above and beyond your duties.
Getting back to a question I asked you earlier, I would like to hear your thoughts on the fact that natural caregivers receive no compensation and that governments benefit from the fact that family members and not the health care system are responsible for various medical appointments. As a result, no data is gathered about that and no services are offered. I would like to hear your thoughts on the financial burden that represents.
Ms. Sylvestre: In my case, there was no financial burden except for my vacation time. I always saved half of my annual vacation allowance for my parents. I was burned out, obviously. Financially, when I was in burnout, I was not earning as much as before, obviously. That was one aspect, but things are fine financially.
For my parents, they were fine financially as well. I did not have to make any expenditures for them. The $500 per person per month for long-term care, which was given as a travel subsidy, was somewhat helpful. It did not cover 100%, but it suited my parents.
Yes, there are effects. I didn’t feel it as much, but I can see it in the people around me. There were just 25 residents in the home, so we knew each other and talked, whether in the dining room, in the parking lot or over coffee. I could see that some people had a lot more financial challenges than I did and could not always afford to take holidays, which I did. I got a lot of support from my employer throughout that period.
Senator Moncion: My other question is about inspection services. Were there inspectors who visited to check the quality of the services offered in French? Did you have to fill out any surveys about the work done with your parents?
Ms. Sylvestre: I know about the inspections because they were always on the agenda for the Family Council. We have the results, but they pertain to the quality of care and safety, not French-language services unfortunately, which are nonetheless part of quality and safety. On the other hand, I can tell you that I did make complaints, to the facilities themselves or to French-language service commissioners, but I also complimented them because it was very difficult at times. It was difficult for me, but also for them to receive nothing but complaints. When things were done well, I was sure to spread the word.
Senator Moncion: You talked about the time during COVID. Were your parents there during COVID?
Ms. Sylvestre: My mother was in long-term care during COVID.
Senator Moncion: What quality of service did she receive at that time?
Ms. Sylvestre: I couldn’t go in so I couldn’t see. I was given some time with her every day, but just 15 minutes. I could see her in the activity room with a student who spoke French. I wished I could have been that student because she was the one who combed her hair and coddled her. That was my job. I always said, “Give me the same training the student gets so I can in and look after my mother”, but it wasn’t possible to get in. It progressed from a virtual meeting to a visit outside her window, and then a visit with her in the inner court. My father, my brother and I were outside on the other side of the fence but I couldn’t touch her until I was able to enter the inner court. My mother was prone to falling. I had to call on my cell phone and ask someone to go pick my mother up every five minutes for half an hour. Things improved until I was able to go in with my father. We received training — albeit for just 15 minutes — on handwashing, disinfecting what we had touched and wearing a mask and visor. We were misinformed and told that we could not touch my mother. It was hard seeing my father cry because he couldn’t touch her.
The Chair: Thank you. If there are no further questions, Ms. Sylvestre, thank you for your generosity and your testimony. I am sure many Canadians appreciate what you have shared about your experience. We will take your comments and thoughts into consideration in preparing our report. Thank you very much.
(The committee adjourned.)