Advocating for Indigenous Persons Living with Disability: An Interview with Evelyn Huntjens
The University of Guelph is celebrating Indigenous Recognition Week from January 15-19, 2024! In support of this event, we are sharing our interview with Evelyn Huntjens about Indigenous Disability Awareness Month (IDAM), which takes place annually in November, and her work in supporting disability services to Indigenous peoples.
Evelyn Huntjens has played an active role for many years in advocating for and providing services to Indigenous persons living with disability. She currently works in a cross-employment position for Indigenous Disability Canada (IDC)—also known as the British Columbia Aboriginal Network on Disability Society (BCANDS)—and the DisAbled Women’s Network of Canada (DAWN).
IDC/BCANDS has supported a financial resource program for Indigenous persons living with disability in British Columbia. Evelyn’s work at IDC/BCANDS currently focuses on horizontal collaboration between organizations that work within the disability space across Canada, focusing on reconciliation and bringing Indigenous perspectives into the conversation. IDC/BCANDS created IDAM as the need to celebrate Indigenous disability and acknowledge the unique barriers Indigenous persons face when accessing support programs and services. Indigenous persons face many barriers when relocating due to their disability and health-related needs: their families are separated, they lose their community and culture, they face isolation and poverty, and they encounter jurisdictional issues. IDC/BCANDS works to fill these gaps in services and to take a holistic perspective by making their programs and services culturally safe and inclusive. There is a lack of trust from Indigenous persons because of their traumatic history with colonization and racism by the government. Evelyn states that it is important for people to be more aware of disabilities, especially undiagnosed invisible disabilities, as these individuals are not getting the supports and services they need. One-on-one navigation services are required to support Indigenous persons living with disability to access disability and health-related programs and services. Maintaining connection with culture and communities must also be addressed to create more inclusive environments.
Can you describe your role and responsibilities at IDC (Indigenous Disability Canada) and BCANDS (British Columbia Aboriginal Network on Disability Society) and how they and IDC/BCANDS as a whole help to provide resources for Indigenous persons living with disability?
I’ll start with a little bit about my previous work history. I worked over 10 years as a financial planner. I was one of the first individuals on Vancouver Island that could open Registered Disability Savings Plans (RDSPs). I worked as a financial planner for Island Savings as well, and specialized in supporting individuals around the RDSP and the whole financial planning piece.
Then I got an opportunity to work for BCANDS, now IDC, because we went from a provincial to a national organization. I helped build a financial resource program for Indigenous persons living with disability across British Columbia (BC). We delivered one-on-one navigation in a remote platform because many First Nation communities are underfunded and lack capacity to provide this type of support. There was and still is a need for culturally safe and inclusive disability supports and services across BC. A lot of the work I did was around identifying the barriers encountered when accessing the disability tax credit (DTC) and the RDSP.
I’ve worked with IDC for eight years. Part of the work to become a national organization involved looking at horizontal collaboration with other national organizations that were working in the disability space. We now share an office in Ottawa with Canadian Council on Rehabilitation and Work (CCRW), Independent Living Canada, and DisAbled Women’s Network of Canada (DAWN); it's a community of practice, and a commitment to work together on issues around disability. Our leadership does a lot of work together. It's really quite important that non-profit organizations look at horizontal collaboration and work together at addressing human rights issues. So we created my cross-employment position with IDC and DAWN Canada to look at our ability to implement reconciliation and bring an Indigenous cultural perspective into the research. I focus my work around the National Action Plan to End Gender-Based Violence, specifically addressing the needs of Indigenous women, girls, and gender-diverse persons. This work is done through relationship building and identifying partners who are committed to supporting women, girls, and gender-diverse persons living with disability.
IDC’s focus is on creating more inclusive environments for Indigenous persons living with disability. We offer a number of programs and services that are focused on a one-on-one navigation services model to provide identified disability and health-related supports for Indigenous persons living with disability.
What motivated you to work with IDC/BCANDS and focus on Indigenous persons living with disability?
For me, as a financial planner, there was a very limited group of people that could access my services; at RBC, you had to have a hundred thousand dollars in investable assets, and you also had to have a hundred-thousand-dollar annual income.
The RDSP was designed as a poverty reduction tool to help people living in poverty—to help lift people out of poverty. Well, I wasn't really servicing those individuals. I did more estate planning, more complex financial planning around taxation and transferring assets. So I got an opportunity to work at BCANDS and work one-on-one with individuals that really needed that support to be able to access the RDSP.
There were no formal support and services, and the provincial government—the BC government—recognized that the people who should be accessing the RDSP were not accessing the RDSP. So we created a partnership with Disability Alliance BC and Plan Institute and called it Access RDSP. Then we worked within our communities to provide one-on-one support, and we were actually recognized by the provincial government, federal government, and internationally as a best practice for the work that we did. So it's been hugely successful.
As Indigenous Disability Awareness Month (IDAM) was created by IDC/BCANDS, could you tell me why IDC/BCANDS felt it was important to create this awareness month and what IDC/BCANDS does specifically as part of IDAM?
We created IDAM as the need to recognize disability, specifically Indigenous disability. Through the work that we do, we identify a lot of barriers that Indigenous persons living with disability face. Especially in a lot of more northern remote communities, when you have a severe and prolonged disability, a lot of times you're forced out of your community; you have to relocate to where you can get primary acute care services or disability-related services that aren't available in your community.
So that's a huge impact. And these individuals are not always able to receive the types of supports and services that they require, so we're a really important connection. We also wanted to celebrate Indigenous persons living with disability for the contributions that they're making. Part of the work that I'm doing right now is to develop a coalition of women, girls, and gender-diverse persons across Canada that live with disability. We're creating a peer support network, and we're providing a lot of leadership and mentoring because we really want women, girls, and gender-diverse persons living with disability to lead the work that we're doing; it's to celebrate disability, and specifically Indigenous disability. I am working on building Indigenous peer support networks for women, girls, and gender-diverse persons and being able to give Indigenous disability a voice. You see a lot of supports and services for various social issues, and a lot of times disability is left out. So we’re connecting and working with organizations to raise awareness of disability and how there is a need to create more accessible programs and services.
You also work with the DisAbled Women’s Network of Canada (DAWN Canada) and the Canadian Feminist Disability Coalition (CFDC) project; could you tell me how your work in these three organizations intersects?
I'm the Director of Indigenous Initiatives at DAWN Canada, so part of the work I'm doing is making sure that the work that DAWN does focuses on Indigenous women, girls, and gender-diverse persons. For example, I'm working on a project called Rooting Resilience. It's funded through the National Action Plan to End Gender-Based Violence, so Women and Gender Equality (WAGE) is funding us. Part of that work is to look at gender-based violence and how we can support that work, but also do it in a culturally relevant way. One of the things we're incorporating into the research is storytelling. We're looking at witnessing as a piece not just to extract data from Indigenous persons living with disability, but to take that story and that perspective and bring it into the work we do as part of our evidence-based data; we're also drawing a connection between gender-based violence and disability.
What types of barriers/issues do Indigenous persons living with disability in Canada face in having their priorities and needs met?
As I mentioned, relocation is a huge issue. If someone has to relocate, often their families are broken up; they lose their community and experience a loss of culture. They face isolation, they face poverty, and there are a lot of jurisdictional issues. First Nations communities are governed by the federal government; when they move into provincial or territorial jurisdiction, it's then a different funding model under the province or territory in which they now reside. A lot of times there are issues with who's paying for what and what services you qualify for. Jordan's Principle was created to help overcome that, but it’s restricted to children up to 19, and not all Indigenous children qualify. It should be expanded to include all Indigenous persons to deal with the jurisdictional issues that we know exist.
And then there’s accessibility: a lot of communities have been underfunded since they've been created; they have very limited money for social programs and resources, so disability always seems to be on the bottom—a lot of times communities aren't fully accessible. It creates more isolation for persons living with disability than you would get in other communities. I think the accessibility issues are more magnified in First Nations communities and more Northern remote communities.
One of the big things right now is mental health programs. There's a real lack of effective mental health programs, and with the effects of COVID, there's just this incredible need. Part of the work we're doing is around creating peer support networks for Indigenous women, girls, and gender-diverse persons to fill in that gap by bringing together these individuals to support each other and help with healing, leadership, and mentorship.
We have identified peer support as an effective model that we can implement. So we’re identifying gaps in the services that exist and trying to create transformative change. I do a lot of relationship-building with communities and organizations specifically around disability, and how to make their programs and services more inclusive. As well, we think about how to create partnerships and build culturally relevant and inclusive programs and services that address Indigenous disability and gender-based violence.
Would you say that these barriers are increasing or decreasing over the years, and have any effective provincial or federal measures been put in place to provide aid?
We have identified a lot of barriers, and it's difficult to push change when it comes to policy because of how the federal and provincial and territorial governments are set up. It takes time, it takes a lot of work, and we do a lot of advocacy around that. But with things like the United Nations Declaration on the Rights of Indigenous Persons, the CRPD, the Accessible Canada Act, and the BC government’s Accessibility 2024, we are seeing provinces and territories and the federal government making a commitment to disability—making a commitment to Indigenous rights. We're really in a unique time where we are able to get funding to identify the barriers, to provide programs and services, and to build capacity where there hasn't been capacity. We're pushing ahead and trying to make some change. I hope that through the work we're doing, we're really going to be able to see change.
Further, what are some social barriers that may be preventing Indigenous persons from accessing programs and services, or wanting to access programs and services?
There are so many issues, and I think that social barriers are magnified within First Nations communities because they're quite different than other communities. For example, transportation: if someone wants to open an RDSP and they live in a very remote community, they may have to travel three hours to their bank. If someone is living with a severe disability, they may need specialized transportation; it may be very difficult to find transportation to go into town, let alone make the journey, book the bank appointment, and do everything that's involved. There are so many things: if someone has to leave their community, then they are displaced into a strange environment, and they don't know people. Becoming disabled can be quite traumatic for people, depending on how their disability comes about—there are so many changes happening, and their support system may not be set up, and they are facing isolation as well. Being able to connect with individuals to provide one-on-one supports and services is just so important. A lot of times people fall through the cracks and don't get support and services that could help them live more inclusively.
I worked with an Indigenous woman who was in her 60s. She had children with disabilities, and I was working with her to get them the disability tax credit and open the RDSP. She also had a disability and had lived her whole life without anyone supporting her with her disability or providing extra financial resources. She's been homeless a number of times, she's had her children involved with child protection, and she's had issues with community housing. Throughout her entire life, no one recognized she had a disability or provided accessible support and services. We were able to identify that, sign her up for persons with disability income assistance—which is the government of BC program—get her the disability tax credit, and get additional supports and services for her. But that's such a common occurrence that we see where Indigenous persons living with disability fall through the cracks.
In addition, there are a lot of undiagnosed disabilities. If you look at women in particular, for example Indigenous women in the federal correction system, we've seen over the last 10 years a 70% increase in incarceration rates. And 42% of women in federal corrections facilities are Indigenous, yet they make up less than 2% of the population in Canada. There's a huge disconnect, and I can guarantee you that there are a lot of undiagnosed disabilities. There would probably be a direct link between their experiences with gender-based violence and their criminalization. Part of the work we do is research around collecting evidence-based data to support funding applications that provide direct supports and try to create transformative change.
Is there more hesitancy with Indigenous persons trusting these services, which might hinder them from participating?
Yes. I can actually give you a really good example on this.
In BC, the Ministry of Children and Family Development is the arm that is responsible for child protection and that has been going to First Nations communities and taking children for decades. If you look at the percentage of Indigenous children in care nationally, it's around 54%; when you look at the population of Indigenous children, there's a huge disconnect. The same arm that removes children also deals with the child and youth with extra supported needs, so they provide disability supports and services to children. I was contacted by a representative from the Ministry of Children and Family Development: they do assessments in the province of BC with education in elementary schools and high schools. A First Nations school registered the lowest score in the assessment. The Ministry of Children and Family Development wanted to go in and take a look—is it potentially because there are undiagnosed disabilities? They identified 50 children that they wanted to test, and when they did the Complex Developmental Behavioural Conditions (CDBC) testing—to test if a child potentially has a disability—39 were identified as having a disability. The representative wanted to get the disability tax credit for these 39 children so the parents could get extra financial resources through the Child Disability Benefit and be able to get RDSPs.
But nobody contacted us, and it's because there's that lack of trust with the government. You can't provide disability supports and services, yet take away children. You can’t ask First Nations communities and Indigenous parents to trust you to deal with their child's undiagnosed disability because they think, “you're going to say my child's disabled and you're going to take my child away from me because I can't care for my child.” It’s such a disconnect within the government to have those services aligned together under one ministry that has such a such a traumatic history with Indigenous children.
What kinds of programs and services do you think are most needed from provincial and federal governments to reduce the barriers Indigenous persons living with disability face?
Our model—the one-on-one navigation service model—is very effective. Essentially, we have a disability case management program where anybody who identifies as having a disability and who identifies as being Indigenous is supported—we don't require any proof. They can sign up and become clients of ours. We take a very holistic approach to their situation. We get to know who they are, what their needs are, and what their disability is. Then we're able to connect them with service providers. We're the glue that binds everything together—we get the overall holistic picture, we learn what services they are accessing, what services they need, and help them with that. Primarily, they come to us because they have a need, they want to accomplish something, they may need to access a service—it could be filling out an application. We will support them. And through that work, we build lasting relationships focussing on how their lives can be more inclusive.
If they have to leave their community, how are we supporting them in their new community? Are we able to help them connect back to their community? That's some really important work too, for people that have been forced to relocate: how are they being supported to maintain connections with their communities? A lot of times when you're living in poverty, you don't have the ability to visit your previous community. So that's a huge thing. And we’re able to do that one-on-one support where we help them to fill out all the paperwork, to complete all the application processes, to connect with the service provider. We also connect with each service provider to make sure they're connecting with each other, because a lot of programs and services are siloed. We're breaking down those barriers and encouraging collaboration. A lot of times we'll have meetings with the specialist, the doctor, the social worker, the support person—whoever's involved—and we are able to give the individual an overview of what their disability needs are, how their disability impacts their activities of daily living, and what kind of supports and services they need, and how we can better support them to live more inclusive lives.
It's a really effective model, having those one-on-one navigation support services. It's been provincially and federally recognized as a best practice, and when supporting Indigenous persons living with disability it's really effective in being able to help them live more inclusive lives.
In your opinion, what role can individuals, communities, and the broader society play in supporting the rights and well-being of Indigenous persons living with disability?
Being more aware of disabilities is important, as I've mentioned; there are individuals with undiagnosed invisible disabilities not getting the supports and services that they need, especially around financial resources. A lot of times, if an individual gets certified that they've got a disability, they can earn stable income through disability income assistance, and they can get into government subsidized housing more easily—their designation of having a disability moves them up on the priority list, so they have the opportunity to improve their financial position and to create more stability. Especially if they can get something like the Registered Disability Savings Plan, you're giving them financial independence. For persons living with disability, any time they do anything, they have to fill out an application, they have to fit into a box, they have to validate and prove their disability.
In the work that we do, we make sure that they don't have to experience that every time they need something. That's, I think, the biggest thing. Persons living with disability have to tell their story over and over and over again, and they re-live that trauma if they've had a traumatic experience. If it was a car accident, for example, they're living with extreme pain and anytime they need something, it's like, “you need to fill out this form, you need to prove that you have a disability.” And then they have to re-live the experience again and again.
Do you find that Indigenous persons have a harder time proving their disabilities compared to non-Indigenous persons?
Many Indigenous persons and communities don't recognize disability the way that Western culture does. Within Indigenous culture, communities include everyone. The communities move at the pace of the whole community. They have a very different perspective on disability—the Western perspective versus Indigenous cultural perspective. We’re trying to bring those together in the work and the advocacy that we do. It's not so much that it's difficult, it's just different. It's a different viewpoint, it's a different perspective.
It's important to understand Indigenous communities and how people think about disability. There are financial services available, but we have to prove they have a disability, and an individual may think, “my child doesn't have this disability.” You have to be able to work together in a culturally safe way to let the individual know that we can improve their child’s quality of life and help their child live a more inclusive life without saying there's something wrong with their child. A lot of times people perceive disability negatively; when it's seen as a positive in the work that you do, you approach things differently. We really want to approach it with a positive perspective and be able to provide supports and services to improve the lives of children, without impeding the beliefs of the family.
Anything else not mentioned that you feel it is important to share?
Indigenous Disability Awareness Month is really about getting buy-in from the government, raising awareness, and highlighting how much more impactful disability is in Indigenous communities because of all the socioeconomic barriers that are well documented—those barriers have a greater impact on disability and there are fewer supports, services, and resources available. There's a greater need for capacity around disability. And I think it's just raising that awareness. We're seeing a big shift in the government's commitment around disability and around Indigenous rights. I think there's opportunity to do a lot of work in this space. We now have a platform to speak about some of the issues and we know that the work we're doing is to give a voice to Indigenous disability—to empower Indigenous persons living with disability to do the work that needs to be done.
It's fundamentally important to allow persons living with disability to do this work. That's something the government has to consider and honour when they're looking at funding non-profits, to ensure the work that organizations do is led by persons living with disability. One part of Indigenous Disability Awareness Month is to really celebrate the ability of Indigenous persons living with disability to do this work.