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Did Anyone Tell You? The Vision Rehabilitation Gap · Perspectives: A VLRC Podcast

0:01
NARRATOR: This is Perspectives, a VLRC podcast.
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ASHLEY: Among the people who hadn't received services, about one in three of
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them didn't actually know vision rehabilitation services existed.
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One in five didn't know how to access vision rehabilitation services.
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[Theme music]
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ANGELINA: Welcome back to Perspectives, a VLRC podcast.
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I'm Angelina Algranti, Vice President of People and Culture for Vision Loss
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Rehabilitation Canada. This series is part of an eight-part collaboration with the
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Vision Health Partners Coalition on the National Strategy for Eye Care.
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Today, we're asking a simple question: when someone experiences vision loss, how
0:44
do they learn about rehabilitation, and accessing it?
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My guests are VLRC colleagues Ashley Shaw, Senior Manager of Clinical Performance and
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Evaluation, and Shannon Foster, Executive Lead of Strategic Integration.
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They contributed to VLRC's Living with Vision Loss in Canada survey report,
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documenting the experiences of more than a thousand people with vision loss.
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Ashley and Shannon, welcome, and thank you for joining us.
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ASHLEY: Thank you so much.
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ANGELINA: Ashley and Shannon, tell us a bit about your roles at VLRC.
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ASHLEY: So I can start. As Angelina mentioned in the intro, I'm the Senior
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Manager for Clinical Performance and Evaluation at VLRC.
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What that means is a few different things.
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I get to support all of our regions across the country, all of our teams, coast to
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coast to coast, and I do that through a few areas.
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I oversee business intelligence and quality improvement activities, to make
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sure that all of our client records are accurate and that staff have the
2:00
information to do their jobs every day. And I also get to do all kinds of fun work
2:07
to help us better understand whether our services, and how our services, are making
2:13
a meaningful difference in people's lives.
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We can do this through program evaluations around the outcomes and the impact of our
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services; also understanding things like who is able to access our services, and
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who we think might be out there who isn't able to access our services, and what
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clients experience while they're accessing our services.
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All of these fun areas really come together to help us understand what
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difference we're making, and where we need to do better.
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SHANNON: As the Executive Lead for Strategic Integration, my role is really
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to connect strategy with action. So I get the privilege of working across the
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organization to ensure that all of our priorities and decisions are focused on
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improving the outcomes for the people that we serve, and that they meet our strategic
3:04
objectives. That means I get to dabble in the research department and work with
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colleagues like Ashley. I get to dig into operations and see where some of our gaps
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are. And I get to work with the innovation team, which allows us to establish new
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projects and services based on our client needs.
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So it's a really interesting, high-level view of what VLRC is doing, and how we
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work within the broader health care system.
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ANGELINA: Perfect. Thank you for those introductions.
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For listeners unfamiliar with vision rehabilitation or habilitation, could you
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explain what it involves? Who can benefit from it, and how does it differ from other
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forms of rehabilitation, such as physiotherapy?
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ASHLEY: Vision rehabilitation really means learning to do the things you want to be
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able to do every day, in different ways. Some of those ways might mean maximizing
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the remaining vision that you still have.
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Some of those might be non-visual strategies and techniques, which of
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course, as someone with no usable vision, are my favourite, because there are all
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kinds of really exciting ways that you could live and work and play without any
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vision at all. But for someone who's transitioning to losing their vision, or
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who maybe was born with some vision loss, it's really important that they have these
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opportunities as soon as possible to learn what's out there for them, what services,
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supports, tools and strategies are available for them.
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We can support people with activities around travel and mobility, technology
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use, community participation, school and work participation, or even just
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activities of daily living and taking care of responsibilities at home.
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Whatever it is that someone wants and needs to be able to do, we can provide
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specialized support through vision rehabilitation.
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So unlike other therapies, of course, there are some physiotherapy and some
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other kinds of rehabilitation that are more focused on restoring the function of,
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maybe, a limb or something like that. We're more focused in vision rehab on
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restoring the function of the person as a whole.
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Whether that means supporting the remaining vision that they have, so the
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person can use it without becoming tired or strained, or if it means doing the same
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thing they used to do in a different way, all of those pieces are part of the style
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of rehabilitation that we're able to provide at a place like Vision Loss
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Rehabilitation Canada. And I've received, on and off throughout my life, vision
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rehabilitation and, of course, vision habilitation supports.
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I was born totally blind, and so was a very, very early vision habilitation
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client, going through all sorts of critical transitions that people go
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through in vision habilitation, where we have congenitally blind children, so
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children who are under the age of five and have lost some vision, who are able to
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meet their developmental milestones, go to school, and eventually transition to
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adulthood and move to more independent living, getting a job, post-secondary.
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All of those pieces we do in a staged approach that meets someone where they're
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at with their vision. So I hope that gives you a little bit more information about
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vision rehabilitation.
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ANGELINA: It does, thank you. And thank you, Ashley, for sharing a bit about
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yourself and your journey. What role does VLRC play in providing vision
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rehabilitation and habilitation services, and which professionals work alongside the
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people we serve?
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ASHLEY: At VLRC, we really want to take an individualized approach and meet someone
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based on their individual needs and goals.
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So, for example, a vision rehabilitation therapist or vision rehabilitation
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specialist will be able to support someone in their everyday activities, like meal
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preparation, organizing clothing, identifying money, or just things that you
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don't necessarily think about every day until you've lost some vision, and then
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you start thinking about a whole list of these things.
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Orientation and mobility specialist is a fancy way of saying that these specialists
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provide support with getting around, with travel, which might involve learning to
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use a mobility cane, or an identification cane, which just lets them identify
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themselves as someone who's maybe lost vision.
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These staff can support with all kinds of things, from learning to get around inside
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a room at the very beginning, to crossing streets and taking public transit.
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There's really a whole full range of support within that discipline.
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Our assistive technology specialists help clients identify what assistive
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technologies might meet their needs best, and can also provide training in how to
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use some of those assistive devices: things like a screen reader, or a screen
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magnifier that enlarges text on the screen, or even something as simple as
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using an iPad or an iPhone that has built-in accessible features.
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And our low vision therapists can assess clients and support them with magnifiers,
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with high-contrast marking, and even some low-tech solutions around their home or
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their workspace that might support them in being able to maximize remaining vision,
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for those who can access low vision rehabilitation, or who still have usable
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remaining vision. So different specialists may work together as a team, or in a
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coordinated approach, depending on what a particular client's situation is.
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And all of them together have this goal of getting someone to a space where they can
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accomplish what they want to accomplish.
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ANGELINA: Right. Thank you. VLRC delivers programs such as Aging in Place, the
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Stroke Program, and Falls Prevention. How do these connect vision rehabilitation to
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the broader health care system?
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SHANNON: Great question, Angelina. These are really great programs that were
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created because we recognize and respect that vision does not exist in isolation
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from the rest of a person's health. We know that someone recovering from a
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stroke, for example, often experiences changes in their vision that affect their
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mobility, their daily activities, and most importantly, their safety.
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And we also know that older adults are at greater risk of falls when their vision
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changes later in life. So by bringing vision rehab into these broader health
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contexts, we were able to identify and address needs that are really often
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overlooked in a person's care plan. And it created opportunities for us to work more
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closely with hospitals and our allied health professionals in the rehab and
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community health care space. So we have occupational therapists and the certified
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vision rehab specialists that Ashley mentioned who do this important work in
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collaboration with those partners, in order to support those client transitions.
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They're great programs. We have them in a variety of locations across the country,
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and they're really designed to bridge that community care gap.
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ANGELINA: Great. Thank you for that information. Crisis response and
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rehabilitation supports people who've experienced sudden vision loss.
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Why is early intervention so important?
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ASHLEY: Well, sudden vision loss can immediately affect daily activities, work,
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family responsibilities and safety, as Shannon mentioned.
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And for someone who's experiencing either a sudden or a severe vision loss, where
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they're not getting the opportunity to gradually transition to that loss of
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vision, early rehabilitation can address some of these practical needs that are
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really urgent and often high priority. It can also introduce useful tools and
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strategies very early on, even while someone is still working with their rehab
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team after a stroke, or while someone is still in hospital.
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So we've had specialists be able to go into hospital and help a client's care
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team understand that now you need to be able to describe to them where things are
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in the room, make sure the client is familiarized with their own hospital room,
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and start to work on things like independently identifying items on their
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plate. Even these little basic tasks that someone might be working on while they're
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still in the hospital, if they've lost some vision, our staff can help with.
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The emotional impact is really high right away for people.
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Sometimes people are anxious, so there are elements like that too, right?
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To have someone there who understands what you're going through.
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SHANNON: Yeah, that transition part is really, really important.
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And the mental health support, like you said, is something that VLRC is currently
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working on, advancing our role in that space, because it's such a counselling
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skill, to really understand the perspective of the client.
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ANGELINA: Your roles work behind the scenes in client care.
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How do you or your teams ensure that service makes a real difference for the
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people we serve?
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SHANNON: It's interesting, because Client First is one of our strategic aims.
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It's one of the three pillars that we've based our current strategic plan, Aim
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Higher, Reach Further, on. And we keep that in mind with every project and every
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decision that we make. So everything we do at VLRC revolves around asking ourselves
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how it benefits our clients and if it supports their journey.
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And we really use that philosophy to guide some of the programs that we create, some
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of the initiatives that we take on, and some of the funding asks and the
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priorities that we advocate for with government.
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They all revolve around that.
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ASHLEY: Yeah, I think too, for myself and for my team, the opportunity to use
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different forms of evidence to tell some of our clients' stories in a particular
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way is really impactful. It's about that big picture.
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Our staff are focused on their specific clients, and we're trying to look at what
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the experience is, in general, of all of the clients, and how we can make sure that
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people aren't falling through the cracks, that there aren't any gaps that we could
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prevent. And so we want to be able to understand things like who's able to
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access our services. Is there equity in terms of people being able to achieve
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different outcomes? And how can we combine all of the data that we have around
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access, service effectiveness, and the client experience and feedback that
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clients provide to us, to be able to help the rest of the organization understand
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what our clients as a group, or as a population, are experiencing when they
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come through our doors? And help us understand who maybe should be coming
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through our doors and hasn't had the opportunity to.
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ANGELINA: Thank you. Yes, I certainly echo that. We certainly make decisions with the
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client in mind. So thank you for that. We've spent a little bit of time talking
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about the services that Vision Loss Rehab Canada provides, and how we work to
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understand whether those services are making a meaningful difference in people's
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lives. But to understand the full experience of living with vision loss, we
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also need to hear directly from the people who live it every day.
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That's what Living with Vision Loss set out to do: capture people's experiences,
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the barriers they face, and what needs to change to better support their
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independence and quality of life. Let's talk about what we heard and what those
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findings tell us. Why did VLRC want to hear directly from people with vision loss
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or blindness about their lives?
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ASHLEY: Well, to start with, as we were talking about, we have a decent amount of
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information about the people who have been able to access our services, but we don't
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necessarily always get a chance to hear from the people who haven't accessed our
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services, or haven't accessed them in a while; people that our staff aren't
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necessarily seeing from day to day, or maybe haven't seen in the past couple of
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years, things like that. And so we wanted people to have an opportunity to tell us
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things that we might not have had the chance to hear yet, or offer perspectives
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from our clients. We also want to make sure, of course, that we're responding to
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actual need, rather than perceived need. So even for the clients that we do see all
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the time, as well as for folks who maybe haven't had the chance to access our
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services, if we imagine that we understand what it is they need, that's not as
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powerful as having them actually tell us what they need, or tell us what their
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lives are like: what supports work well for them, what they use to accomplish
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everyday activities, where the biggest gaps for them have been in terms of a
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resource or a tool or integration of systems.
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All of that is information that we can't necessarily get from client record data
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alone. It's sometimes best just to go to the source and ask people: What is it that
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we can do better? What is it that we can do differently?
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What situations do you deal with every day that you might like some support with?
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ANGELINA: Thank you for that. What do the referral and awareness findings tell us
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about how people currently discover vision rehabilitation services?
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ASHLEY: So a lot of people in the survey reported that they were referred to vision
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rehabilitation services from their optometrist or ophthalmologist: 46%, in
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fact, of the people who had received vision rehab services.
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But independent referrals were pretty common as well.
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22% of our survey respondents who'd received vision rehab services told us
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that they had self-referred. And the remaining folks who received services were
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referred through a whole different combination of family and friends,
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community organizations, and other health care providers, like their family doctor,
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occasionally. But what this really tells me, this high percentage of referrals from
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ophthalmologists and optometrists, is how important it is for people to have access
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to that referral option to us at the earliest stage possible.
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Optometrists and ophthalmologists are the folks who are working with people when
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they first receive a diagnosis, when they first receive a prognosis, and maybe when
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they don't quite understand yet what the actual functional impacts of that
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diagnosis and prognosis are going to be on their lives.
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So to have someone who can intelligently talk about vision rehabilitation services,
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who knows what impact they've had on clients, and can discuss that option with
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their patients, or at least plant the seed for them to consider later.
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At least we don't then have people coming to us and telling us that they didn't even
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know that our services were an option, which is always really sad.
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ANGELINA: Thank you. Why do you think some people living with vision loss still
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aren't connecting with rehabilitation services?
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ASHLEY: Our survey respondents gave us lots of clear information about this as
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well. Among the people who hadn't received services, about one in three of them
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didn't actually know that vision rehabilitation services existed.
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So they were maybe learning about it, some of them, for the first time just by taking
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our survey. One in five didn't know how to access vision rehabilitation services.
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So maybe even if they received services long ago, or they had heard of services
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like this, or had talked to friends who received services, they weren't sure how
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to start their referral pathway or their vision rehabilitation journey.
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People can't seek out a service if they don't know it exists.
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They can't access one if they don't know where to start in terms of access.
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So this really emphasizes that vision rehabilitation needs to be part of the
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journey with vision loss from the very beginning.
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Clear, simple referral pathways are really critical for people to be able to access
19:35
services when they need them. They can wait till later, or things like that, but
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they should be able to make an informed decision about when they want to access
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services, and what services they feel they need at that point in time.
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Really, someone's access to vision rehab services shouldn't depend on them knowing
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how to navigate the health system, or happening to encounter the right
19:54
professional by chance.
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ANGELINA: Many survey respondents described emotional distress, isolation
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and financial strain, and nearly half live below the poverty line.
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What do these findings tell us about what it really takes to live independently with
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vision loss?
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ASHLEY: So whenever I think about independence, I also like to think about
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autonomy, which is basically just being able to do the things that you decide are
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important for you to be able to do; being able to have that element of choice and
20:24
agency in your life, to do the things that make you proud, that help you fulfill
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whatever purpose you have in life, to get a little bit philosophical.
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So independence is a piece of that: to be able to actually have the skills and the
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tools available to you to accomplish things that you want to be able to do.
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But that's not all that independence and autonomy are.
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People can have really strong skills, but they can still face, for example,
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transportation barriers, especially in regions or geographies that have very poor
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public transit, which is essential if someone can't drive.
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People can face technology barriers. They can have amazing technology and skills and
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encounter inaccessible websites, or documents that aren't provided to them in
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a format that can work with their technologies, things like that.
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People can face financial barriers if they struggle with income, or struggle to find
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employment. Even just the financial barriers associated with the cost of
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assistive technologies or other specialized tools across a lot of the
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country are quite significant. That really underscores how we can do our part, for
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sure, to help people develop skills and strategies, and to connect them with
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supports where those are available. But we can't place responsibility for all of
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independence on an individual. People need to be able to live in environments that
21:50
enable them to be autonomous and independent.
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ANGELINA: Yes, that's very fair. The survey touched on assistive technology,
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employment and transportation. Which of these gaps do you think the public
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understands least?
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ASHLEY: So I think technology is kind of my favourite example here.
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In the survey, we had a very, very large number of people who told us that they use
22:13
a smartphone as a travel aid. So in amongst the other tools that they use for
22:19
travel, like a cane or a guide dog, they're also using their smartphone, and
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specialized or non-specialized smartphone apps, to assist them with navigation, or
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image recognition on signs, all kinds of things like this while traveling.
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We have a lot of folks who are using that to actually enlarge or speak out elements
22:35
of their environment, like signs and text and things like that.
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So then you've taken a smartphone from something that's a standard communications
22:44
device to something that's actually an accessibility tool.
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It's actually become a mobility aid, alongside a cane and a guide dog and other
22:52
aids that we can use in concert with each other.
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We also had a very large number of people who responded to the survey tell us that a
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smartphone is something that they have difficulty affording: either a smartphone,
23:06
or the data plans necessary to use it, of course, or both.
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So this is an element where we have an accessible technology that's relatively
23:16
mainstream and easy to get from a store. We may also have training.
23:22
Of course, in vision rehabilitation services, our assistive technology
23:25
trainers and our low vision therapists can support people in learning to get their
23:30
smartphone set up so that it's as accessible as possible for them to use.
23:33
But all of those elements aren't going anywhere if you can't afford the device,
23:37
or if you can't afford the data plan. You're also not going anywhere with the
23:41
technology if an app, or a website, or a document that you need to review is not
23:48
compatible with screen reading or screen magnification technology.
23:50
And so all of these pieces fit together. I like to think of them like a puzzle, or a
23:56
math equation. For this kind of smartphone in a travel scenario to work, we need
24:03
technology, plus training and resources, plus affordability, plus accessible
24:08
design.
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ANGELINA: About 20% of respondents lost their vision between ages 45 and 64, a
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period when publicly funded eye exams are typically no longer offered.
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What does that imply for early detection and prevention?
24:24
SHANNON: The 20% of respondents losing their vision was maybe a surprise to us,
24:29
but it wasn't. It really highlighted the importance of not relying on age alone as
24:35
an indicator of who needs access to assessments, because people in this age
24:40
group are working, and they're raising families and supporting their households
24:44
financially. And changes in their vision have significant consequences for their
24:49
employment, their income and earning potential, their family responsibilities,
24:53
and of course their mental health, when changes like that occur and they're not
24:59
prepared for it. So we really need accessible information about eye health,
25:05
screening and assessment, and clear referral pathways when concerns do arise,
25:10
from ophthalmology into allied health care and into vision rehabilitation.
25:14
We also really need to recognize that early identification should connect people
25:19
not only to treatment, but to us at VLRC when they need it.
25:25
Because our eyes are not separate from our bodies, right?
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Health care should encompass eye health, and it should be funded and it should be
25:35
supported. And regular exams should be encouraged across the lifespan.
25:39
So removing financial and access barriers, and creating a prevention and awareness
25:44
campaign at a national level, would be so effective in reducing the impact of that
25:50
vision loss, through early treatment and early involvement of vision rehab where
25:54
it's needed.
25:55
ANGELINA: Can you share a story, without identifying details, of a client whose
26:01
independence changed through rehabilitation?
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ASHLEY: So I can share a story. It's stuck with me, and I feel like I've told this
26:10
story in a few different situations, because I think it's such a good
26:13
representation of the impact that our teams have on people's lives.
26:18
We had a client who approached us because they wanted to get back in the kitchen.
26:23
They had lost some vision, and they wanted to be able to do some everyday meal prep
26:28
again for themselves, but they weren't sure how to go about it, or whether they
26:32
still could, and they wanted some more information.
26:34
So we had a staff member, a vision rehabilitation therapist, who visited with
26:39
the client in their home to provide some assessment and find out more about what
26:45
the client wanted to achieve. Our staff member was able to support the client with
26:51
starting to learn some skills for meal prep and kitchen safety with vision loss.
26:57
And one of the things that our staff member realized while they were visiting
27:02
is that the client's family members who live with them were more anxious about the
27:07
client being in the kitchen than the client was.
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The client had more of an exploratory attitude, and was willing to learn.
27:15
Their family members, if the client got up, would be like, “What can we do for
27:20
you? What can we get for you? You just sit down.
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It's fine.” And they weren't realizing that this was causing the client some
27:27
frustration that wouldn't have otherwise been present.
27:30
And of course, we know from mental health research that social support is great for
27:34
people, but too much social support makes people anxious, makes people depressed,
27:38
affects people's confidence, and impinges on that autonomy that we were talking
27:42
about earlier. And so as the specialist was working with the client, they were
27:46
also helping the client to self-advocate with their family members, and
27:50
normalizing, just by being in the home and working on some tasks in the kitchen and
27:54
some skill development with the client, the client being in the kitchen again,
27:59
doing these things for themselves again that they wanted to be able to do; that
28:02
there were actually strategies for the client to do this and still be safe.
28:06
It became more normal for the family members.
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And families go through a lot when someone close to them is losing vision.
28:15
Really, it was giving the client the tools to be able to learn new skills, but also
28:19
learn the skills of being able to describe what it is that they're going through to
28:23
their family, and what it is that they want to be able to accomplish.
28:26
It's sometimes hard to express that to the people who love us the most, and we know
28:29
they want the best for us. But sometimes we need the skills to tell them to maybe
28:34
back off a tiny bit, and let us do our thing, and let us explore.
28:39
ANGELINA: Thank you for sharing those details with us.
28:42
The survey gives us a clearer picture of the challenges people experience, but it
28:47
also raises a bigger question: how do we turn evidence into meaningful change
28:52
across Canada? One important opportunity is the National Strategy for Eye Care.
28:56
It creates a national framework for improving eye health, and we need to
29:01
ensure that vision rehabilitation is recognized as an essential part of the
29:05
journey; not just diagnosis and treatment, but the support people need to adapt,
29:10
participate, and live as independently as possible.
29:13
Let's explore what this can mean in practice.
29:17
In simple terms, what is the National Strategy for Eye Care, and why should
29:23
vision rehabilitation be included?
29:25
SHANNON: The National Strategy for Eye Care provides a national framework for
29:30
improving eye health in Canada. It recognizes the importance of preventing
29:36
eye disease, improving diagnosis and treatment, supporting research and
29:41
innovation, and also ensuring people living with vision loss can access
29:46
rehabilitation and habilitation services.
29:48
And rehabilitation is essential in this strategy because treatment cannot always
29:53
restore someone's vision. So even when medical care is excellent, a person may
29:59
still need support to adapt to changes in how they go about their daily lives.
30:05
So we really need to see rehabilitation and habilitation as part of that full
30:11
continuum of care, not just an optional service that comes after medical
30:17
treatment. The real goal is not simply to treat the eye condition.
30:21
It is also to help the people experiencing it achieve the best possible health, the
30:27
best independence and the best quality of life that we can help them achieve.
30:33
ANGELINA: And where does vision rehabilitation fit within the pillars of
30:39
the strategy, particularly integrated care systems, equitable access, and strategy
30:45
implementation?
30:46
SHANNON: I see rehabilitation as cutting across the strategy, rather than fitting
30:51
neatly into one particular pillar. For example, with integrated care,
30:55
rehabilitation needs to be connected to eye care, primary care, hospitals and
31:00
community supports. We talk about that integration into the broader health care
31:05
system. We really need to be part of the whole community.
31:11
Equitable access is the same. People should be able to access appropriate
31:16
services regardless of where they live, their income, their age or their
31:21
diagnosis, and that includes access to vision rehabilitation services.
31:25
And for implementation of the strategy, across the whole system, we need those
31:32
clear referral pathways. We need sufficient workforce capacity, and we need
31:37
sustainable funding. And those are probably the biggest challenges for vision
31:42
rehabilitation services: we're there, and to your point, we struggle to get the
31:49
connection to the clients who need us. We struggle for funding to support the
31:54
development of the workforce that we need.
31:57
The opportunity now, of course, is to make that recognition meaningful in practice,
32:00
and not just in theory, so that people are consistently referred to our services and
32:06
can actually access them.
32:08
ANGELINA: What did the survey show about differences between regions, and how does
32:12
that connect to the strategy's focus on equitable access?
32:16
SHANNON: Well, the broader issue really is that the national picture can conceal very
32:21
different experiences, depending on where someone lives, because geography can
32:26
affect their access to eye care professionals and our rehabilitation
32:30
specialists. To Ashley's point, transportation and assistive technology
32:34
factor in, and the general broader community supports that they have access
32:40
to. So people who are living in more rural, remote and northern communities in
32:46
Canada may face additional travel and service barriers compared to people in
32:51
more urban and suburban centres. And different provincial and territorial
32:56
arrangements also affect how services are provided and how they can be accessed.
33:02
So as we go through with this strategy, we really need to examine the regional
33:08
differences carefully, rather than assume that the same model can work anywhere in
33:14
Canada. We need to be able to adapt the way we deliver services across the
33:21
country. So the goal really is consistent access to the appropriate services,
33:26
including rehabilitation, while allowing service delivery on the ground to respond
33:31
to those local needs.
33:32
ANGELINA: Thank you for that. The strategy also speaks to research and data.
33:37
How do VLRC's survey and its work in clinical performance and evaluation
33:42
contribute to building the evidence base?
33:45
ASHLEY: I think that our clinical performance work and our evaluation work
33:49
help us to understand who we're serving, and what needs they've come to us with;
33:57
maybe how it was that we served them, what strategies we used, all of those sorts of
34:03
pieces. There are also factors like wait times, how long people waited to speak
34:09
with their specialists, and what supports they had while they were waiting to access
34:14
their vision rehabilitation specialists. Those sorts of pieces are important as
34:18
well. And what outcomes did they experience with us?
34:22
There are also opportunities that we had, like this one with the Living with Vision
34:28
Loss in Canada study, to administer a survey to a large group of people who both
34:34
were and were not vision rehab clients, but who had lived experience with vision
34:40
loss. But there's so much else that we don't necessarily have the opportunity to
34:45
do without an integrated research approach to vision rehabilitation in Canada.
34:49
We see this even if we look at the published research.
34:54
We've got some strong vision science and vision rehabilitation researchers in
34:59
Canada, and research streams. We've got ourselves at Vision Loss Rehab Canada.
35:04
We're fortunate to have these. But we really need an integrated approach.
35:09
What types of supports are most impactful on the ground, to support maybe our staff
35:14
in having virtual contact with our clients?
35:16
How can those virtual supports be administered in a way that's accessible?
35:20
Because a very decent proportion of vision rehabilitation frontline staff members,
35:26
like myself, also have lived experience with vision loss.
35:28
So how can we make sure that when our staff and our clients are working
35:34
together, and maybe both the staff and the client have some vision loss, they're able
35:39
to share these tools, and that we're able to offer our clients the best practices
35:46
and the best service models that we can? Having an integrated approach to vision
35:51
rehab research would allow us to do that in the unique challenges that we face in
35:57
Canada.
35:58
ANGELINA: Thank you for that, Ashley. To wrap up, if listeners take away one
36:01
message from today's conversation, what would you suggest that be?
36:05
ASHLEY: I think really, all of us together need to remember that vision loss doesn't
36:10
determine what independence or autonomy can look like for someone.
36:13
Independence is personal, autonomy is personal, and it starts with what someone
36:17
wants and needs to be able to do. And so vision rehabilitation can provide people
36:23
with skills and strategies and tools, including non-visual strategies and tools,
36:27
to be able to accomplish those activities that they want to be able to do, either
36:34
for the first time, in the case of vision habilitation, or once again, in the case
36:40
of vision rehabilitation.
36:41
SHANNON: Good point, Ashley. I agree. From that client perspective, I would hope that
36:47
every person experiencing vision loss is able to be informed about rehabilitation
36:51
and connected to the appropriate services that they need.
36:54
Because too often, people are trying to navigate a complicated system at a time in
36:59
their life when they may be coping with major changes.
37:03
And a routine, accessible referral pathway would definitely be a practical step
37:07
towards closing that gap. But I would also hope that people were able to access rehab
37:13
earlier, and support their independence, like you were saying, and their autonomy,
37:17
and make better use of the services and the expertise that's already available.
37:23
Because we really need to move from rehab being available in principle to
37:28
rehabilitation being accessible in practice.
37:30
So yeah, client first, always.
37:34
ANGELINA: Absolutely. Excellent point. How can someone reach VLRC, and who can make a
37:40
referral?
37:40
ASHLEY: So anyone, I would say, can make a referral.
37:46
If you're a community service organization supporting someone, if you're an eye care
37:50
professional, if you're a different type of health professional, like allied health
37:54
professionals, if you're a friend or a family member or a neighbour, I've seen
38:00
all of those folks come through as referral sources.
38:03
You can also refer yourself to us. If you just want more information, have
38:08
questions, have a particular skill that you're wanting to work on, or you just
38:14
want to know what your options are to be able to approach a particular activity,
38:20
you can refer yourself to us as well. Right, Shannon?
38:24
SHANNON: Yeah, we have a number of services that are available to our
38:28
clients: everything from Veterans Affairs, to our Indigenous Health Program.
38:32
We have the Screening Initiative. We've got the GAIN program, which does
38:37
disability support benefits. There are so many services for different aspects of
38:41
people's transition and journey through vision loss.
38:43
You don't have to have fully lost your vision.
38:46
If you feel that you're just needing some support, some assistive tech, we can hook
38:51
you up with peer support programs as well, through our partners at CNIB.
38:56
There are lots of options for a variety of stages.
38:59
So if it's you, or someone else that you know who is experiencing vision loss, I
39:05
would definitely encourage you to reach out and see what services we have
39:10
available in your region. Because you don't have to have everything figured out
39:14
before you take those first steps.
39:17
ANGELINA: Thank you. That's very helpful. I've just got three questions left to wrap
39:22
it up. You've both been so helpful and provided so much valuable information.
39:27
I thank you for that. If you had 30 seconds with the next Minister of Health,
39:33
what's the one thing about the National Strategy for Eye Care you'd want them to
39:38
understand?
39:39
SHANNON: I would want them to understand that treating an eye condition, and
39:44
helping someone live and thrive with that eye condition and vision loss, are two
39:49
different but equally important parts of care.
39:53
The national strategy is this opportunity to connect all those pieces together.
39:58
And we really need those clear referral pathways, and the funding, and the access
40:04
to vision rehabilitation and habilitation, regardless of where someone lives.
40:08
So our success in this strategy shouldn't be measured by how well we prevent or
40:13
treat eye disease, but by whether people can access the support that they need to
40:18
live independently and fully participate in their communities.
40:22
ANGELINA: And this podcast series launched on World Sight Day.
40:25
What does that day mean to you and the organization?
40:29
ASHLEY: So for us at Vision Loss Rehabilitation Canada, it's the
40:32
opportunity to remind people what vision rehabilitation is, or to help them
40:37
understand it for the first time; to help people understand that a difficult
40:41
prognosis doesn't mean that they can't do the things they want and need to be able
40:46
to do anymore. Prevention matters; it's critical.
40:48
Diagnosis and treatment matter; they're critical.
40:51
But the conversation can't end there. For me personally, I've always had difficulty
40:55
with the concept of World Sight Day, because I always thought, even as a kid
41:00
growing up, that it was about the restoration of vision.
41:02
And I have an eye condition that has that type of prognosis, where my vision can't
41:06
be restored, and there are many, many people like myself who face that
41:09
situation. Even with something like an eye health strategy, we're thinking, my eyes
41:13
have already kind of left the building, right?
41:15
So to me, World Sight Day is about us as well, and our needs as well: so that even
41:20
if your vision can't be restored, or you've already lost your vision, or you
41:23
have an eye condition that's not preventable, you have access to the
41:26
supports that let you become who you're meant to be.
41:29
ANGELINA: And is there a moment or a story that reminds you why this work matters,
41:34
even on the hardest days?
41:35
SHANNON: We've worked together on these surveys and through multiple focus groups
41:40
as we developed our strategic plan. And I think it's really the honesty and the
41:46
generosity of the people who share their experiences with us, whether it's through
41:51
our client experience survey, or, like I said, our focus groups and our external
41:56
research, because they're taking the time to tell us what's working, and where
42:01
they're facing barriers and roadblocks in their journey.
42:04
And it helps highlight what we could do to make their lives easier.
42:10
Those conversations for us are so incredibly valuable, because they remind
42:14
us that behind every data point and question is that person, with their own
42:20
goals and their challenges and their aspirations.
42:23
And when we listen to those experiences, and use them to shape our services and our
42:28
strategies and our priorities, we're really, truly making sure that the voices
42:32
of the people we serve are at the heart of every decision we make, and that we're
42:38
always putting our client first.
42:39
[Theme music begins and plays to the end]
42:40
ANGELINA: Ashley and Shannon, thanks for joining us, and thanks to our listeners
42:45
for tuning in to Perspectives, a VLRC podcast.
42:48
So the key takeaways from this podcast are that vision rehabilitation must move from
42:55
being available in principle to accessible in practice.
42:58
Everyone experiencing vision loss should know about it, and how to access it.
43:04
If someone you know is experiencing vision loss, visit visionlossrehab.ca.
43:11
Are you enjoying the series? Follow or subscribe to help others discover these
43:16
conversations. Next week, host Chris McLean talks with Yvonne Garvey on the
43:22
Canadian Council of the Blind about community, connection and peer support.
43:26
Until then, this has been Perspectives, a VLRC podcast.
43:31
Thanks for listening.