00:00:13
S1: Our guest today is a researcher from Monash University. She's recently begun her PhD looking into functional vision assessments for children and young people who are blind or have low vision in the education system. It's my great pleasure to welcome Claire Dowling to Talking Vision, to have a chat all about her work and so much more. Claire, welcome to Talking Vision. Thank you very much for your time.
00:00:44
S2: Thank you so much for inviting me in. I'm really excited to be here.
00:00:48
S1: No problem at all. Now, Claire, let's start off with a bit of a chat about your research. Tell us a bit about that.
00:00:57
S2: Yeah, sure. So I've recently embarked on a PhD with Monash University, and I'm really excited about this topic. It's something that's really close to my heart, and it's something that I have experienced myself in my own work. So as a specialist teacher working both in the UK and Australia. So this research is focusing on developing a standardised and outcomes based functional vision assessment for children and young people who are blind or have low vision. And the reason that I believe is so important is because as we know here in Australia, a lot of the systems that children and young people engage with require an understanding of their functional needs in order to access support. So systems like the NDIS and also in school, in terms of the school adjustments and the schools themselves being able to access funding to put in place the adjustments or resources that children and young people need. So at the moment, what we know is that both in Australia and internationally, actually this tool doesn't exist. So there isn't one that currently exists that standardized and outcomes based, that specialist teachers, allied health professionals and the NDIS can use in order to better understand what the functional impact of vision is on daily living as well as learning. So that's really the premise and the aim of the research project that I'm working on at the moment.
00:02:35
S1: That's sort of also follows into your work as part of the National Disability Research Partnership. What's that been like? And tell us a bit about the NDP and the work they do.
00:02:49
S2: Yeah, sure. So the NDP are a fantastic organization. I've had a really positive experience with the NDP so far. So they're an independent organization and they have funding from the government. And the whole kind of aim and mission is around empowering and supporting disability led research, and by that they mean research that's led by people with disability and with people with disabilities. So they're really focused on that co-design piece and the importance of having the lived experience voice, not just as a tack on, but actually built in from the ground up in any research that is for and about people with disability. So I was one of 14 lucky, successful applicants to be on the NDI leadership program. And what that means is we're a group of researchers with disability doing research for people with disability. And the NDI have provided us with funding in order to support our professional development and our ability to complete the research in a way that is truly inclusive and has co-design, like I said, kind of built in from the ground up. So it's really exciting. And we've just started. So we had our first community of practice session last week, which was really exciting. And we came together and we talked about that. The purpose of that one was to really talk about what it is as a community that we really want to achieve, that would be useful for us in terms of this community of practice, to enhance the profile of researchers with disability in Australia.
00:04:39
S1: Well, that's amazing to hear that. It's going so well and very excited to hear it's just kicked off. If people would like to know a little bit more about the Disability Research Leadership program, let's give them some details about the program itself and how long you'll be involved with and what sort of things you're looking forward to getting involved with in the program.
00:05:06
S2: Sure. Okay. So the leadership program is a 12 month program. We're provided with $30,000 of funding for that year each to use for professional development. So that could mean many different things. Everybody in this group, in this community of practice is working on different pieces of research, all about supporting people with disability in various areas across health and education and NDIS and other sectors. So in terms of the use of the funding, I'm really looking forward to being able to access and attend, for instance, conferences. So for me, I'm keen to get to the round Table conference and I'm keen to get to the spare V conference, which directly applies to my research, but also we can use it to help us around. Like I said before, that real inclusion of people with disability in our research. So if we wanted to engage with a community of people with disability that required AAC. So that technology based communication tools, we could use the funding to help us access that type of technology in order to use that with our community, our participants, for our research to make sure that it is truly inclusive and that everybody is able to participate to the full extent that they wish to.
00:06:36
S1: Okay. Now, Claire, I'd love to get your perspective on something. It's a very deep and a bit of a philosophical question, or maybe not, but let's have a bit of a chat about the importance of voices with lived experience in research, in academia, especially in these discussions and research that you're embarking on with direct relevance to children and young people with disability. How important do you believe that lived experience can be and absolutely is already in these sort of fields?
00:07:18
S2: I think it's absolutely crucial. Um, without it, I'm not sure how much waiting the research can have. I mean, I'm very much on the kind of talking philosophically. I'm very much on the nothing about you without you. And as a person with disability myself. So I am legally blind. I have the experience myself of understanding how important that is in terms of research. So as an example, it's my lived experience that I bring to my research that drives my motivation, but also gives me those unique perspectives and insights on what's happening and what that would actually mean for me as a person who is blind. So what I mean by that is I'm very well aware, and I think people with disability are very well aware of this big kind of gap between what policy says or what the research says or the literature says. And then what's actually happening. So the whole idea of this lived experience, the co-design and the inclusion and those voices are absolutely at the center. They're driving it, they're shaping it is that we're bridging that gap. We're making sure that what we research, what we share in terms of contributions to policy or practice are actually going to make a meaningful difference to those people with disability.
00:08:52
S1: Of course. And Claire, I'd love to touch back on your research for a minute. What have you found so far in the course of your research in regards to these services that are so very badly required for children and young people, but also, what are you looking forward to diving into a bit more in the next months and years?
00:09:21
S2: Well, as we know, or as I kind of said before, we know there's an urgent need for this ability to assess functional vision for children and young people with vision impairment. So what I've found so far, so bearing in mind and very much at the early stages of my.
00:09:38
S1: Of course.
00:09:38
S2: Yeah, yeah. So I'm just beginning. I'm just diving into the literature and I'm kind of finding out what the themes are, what what is coming out of the literature across the board, what are some consistencies that we're seeing? So one of the things that I have noticed is, firstly, I think in this field, we really need to understand the difference between clinical and functional vision. And this is something that's these terms are almost used interchangeably within the sectors. So, you know, when we talk about clinical, we're talking about that measurement of visual functions. So your acuity, your peripheral vision, you know, might be color vision. And they're normally done in controlled environments. So at an ophthalmologist, for example, whereas the functional vision is really about understanding the impact of vision on daily living activities. So this was the first thing that I kind of have been noticing within the literature is that the terms are used interchangeably, but they're actually very different. A clinical assessment is very different to a functional assessment. And at the moment it's clinical assessments that are being used mostly. Whereas as we know these systems require that understanding of the functional impact. So that's driving kind of the need for this space. The other thing that I've kind of noticed through the literature is that there are gaps in terms of what we're assessing and the gaps aren't necessarily isolated. So they're very much interconnected. And what I mean by that is what I'm seeing is that, you know, without agreed standards in functional vision assessment, practice is inconsistent. And that means that without consistent practice, evidence is unreliable and without reliable evidence, planning and funding decisions can't really be made in an informed way. So this is just the first kind of things that I'm beginning to understand as I, as I start my literature review and I start to read around the space.
00:11:47
S1: It's absolutely fascinating. Claire, we're gonna have to absolutely have you back in six, 12 months time, maybe even two years time and get a bit of an update because I'm sure a lot of our listeners will be very keen to hear more about this side of things. As you know, myself, with low vision going through both blind and mainstream schooling. It's super important. A topic very interesting to me especially, but a lot of other people as well. Now, Claire, just finally, we've touched on this a little bit already, but what do you believe universities and research organizations can do to improve accessibility and inclusion for academics with disabilities?
00:12:39
S2: It's a really interesting question, Sam, and it's something that I'm going through the journey of right now. So as I've engaged in this PhD with Monash University, I'm coming up against things that are, I guess, the barriers and the enablers to me being able to complete and engage in my academic journey with a university. And what I've found is that the first thing I would say is really important and that I'm really fortunate with, is that the university is open to honest feedback and actually takes that feedback and makes those changes. So as an example, with Monash University, there were a set of induction modules that needed to be completed online. I found the online platform to be inaccessible, so I couldn't complete those induction modules. So I reached out to my supervisors and I reached out to the graduate research team, and I just shared that feedback. And the response I had was really supportive. I guess is the best way to describe it. So they absolutely took on board the feedback. They went away and they are actively trying to improve the platform. And in the meantime, to make sure that that doesn't delay my ability to complete my research journey. They provided me with a person, a mentor, and a tutor who can actually deliver the modules to me on one on one basis in a way that best meets my needs. And it's that type of flexibility, that type of openness, that type of willingness to make changes to intrinsic systems within the university. That makes all the difference in my experience.
00:14:28
S1: That's great to hear that. It's, you know, been, um, very receptive and quite supportive. That is good news. Certainly. Now, Clare, as I said before, will absolutely have to keep tabs on, um, how everything's going. We'll have you back on the program in six months or one year's time to have a bit more of a chat about your research. As we understand, it's still in its early stages, so we won't dive in too much today, but very excited to have you back on the programme in the future. So thank you very much for your time today.
00:15:06
S2: Thank you. I'd love to come back and thank you for having me.
S1: Our guest today is a researcher from Monash University. She's recently begun her PhD looking into functional vision assessments for children and young people who are blind or have low vision in the education system. It's my great pleasure to welcome Claire Dowling to Talking Vision, to have a chat all about her work and so much more. Claire, welcome to Talking Vision. Thank you very much for your time.
00:00:44
S2: Thank you so much for inviting me in. I'm really excited to be here.
00:00:48
S1: No problem at all. Now, Claire, let's start off with a bit of a chat about your research. Tell us a bit about that.
00:00:57
S2: Yeah, sure. So I've recently embarked on a PhD with Monash University, and I'm really excited about this topic. It's something that's really close to my heart, and it's something that I have experienced myself in my own work. So as a specialist teacher working both in the UK and Australia. So this research is focusing on developing a standardised and outcomes based functional vision assessment for children and young people who are blind or have low vision. And the reason that I believe is so important is because as we know here in Australia, a lot of the systems that children and young people engage with require an understanding of their functional needs in order to access support. So systems like the NDIS and also in school, in terms of the school adjustments and the schools themselves being able to access funding to put in place the adjustments or resources that children and young people need. So at the moment, what we know is that both in Australia and internationally, actually this tool doesn't exist. So there isn't one that currently exists that standardized and outcomes based, that specialist teachers, allied health professionals and the NDIS can use in order to better understand what the functional impact of vision is on daily living as well as learning. So that's really the premise and the aim of the research project that I'm working on at the moment.
00:02:35
S1: That's sort of also follows into your work as part of the National Disability Research Partnership. What's that been like? And tell us a bit about the NDP and the work they do.
00:02:49
S2: Yeah, sure. So the NDP are a fantastic organization. I've had a really positive experience with the NDP so far. So they're an independent organization and they have funding from the government. And the whole kind of aim and mission is around empowering and supporting disability led research, and by that they mean research that's led by people with disability and with people with disabilities. So they're really focused on that co-design piece and the importance of having the lived experience voice, not just as a tack on, but actually built in from the ground up in any research that is for and about people with disability. So I was one of 14 lucky, successful applicants to be on the NDI leadership program. And what that means is we're a group of researchers with disability doing research for people with disability. And the NDI have provided us with funding in order to support our professional development and our ability to complete the research in a way that is truly inclusive and has co-design, like I said, kind of built in from the ground up. So it's really exciting. And we've just started. So we had our first community of practice session last week, which was really exciting. And we came together and we talked about that. The purpose of that one was to really talk about what it is as a community that we really want to achieve, that would be useful for us in terms of this community of practice, to enhance the profile of researchers with disability in Australia.
00:04:39
S1: Well, that's amazing to hear that. It's going so well and very excited to hear it's just kicked off. If people would like to know a little bit more about the Disability Research Leadership program, let's give them some details about the program itself and how long you'll be involved with and what sort of things you're looking forward to getting involved with in the program.
00:05:06
S2: Sure. Okay. So the leadership program is a 12 month program. We're provided with $30,000 of funding for that year each to use for professional development. So that could mean many different things. Everybody in this group, in this community of practice is working on different pieces of research, all about supporting people with disability in various areas across health and education and NDIS and other sectors. So in terms of the use of the funding, I'm really looking forward to being able to access and attend, for instance, conferences. So for me, I'm keen to get to the round Table conference and I'm keen to get to the spare V conference, which directly applies to my research, but also we can use it to help us around. Like I said before, that real inclusion of people with disability in our research. So if we wanted to engage with a community of people with disability that required AAC. So that technology based communication tools, we could use the funding to help us access that type of technology in order to use that with our community, our participants, for our research to make sure that it is truly inclusive and that everybody is able to participate to the full extent that they wish to.
00:06:36
S1: Okay. Now, Claire, I'd love to get your perspective on something. It's a very deep and a bit of a philosophical question, or maybe not, but let's have a bit of a chat about the importance of voices with lived experience in research, in academia, especially in these discussions and research that you're embarking on with direct relevance to children and young people with disability. How important do you believe that lived experience can be and absolutely is already in these sort of fields?
00:07:18
S2: I think it's absolutely crucial. Um, without it, I'm not sure how much waiting the research can have. I mean, I'm very much on the kind of talking philosophically. I'm very much on the nothing about you without you. And as a person with disability myself. So I am legally blind. I have the experience myself of understanding how important that is in terms of research. So as an example, it's my lived experience that I bring to my research that drives my motivation, but also gives me those unique perspectives and insights on what's happening and what that would actually mean for me as a person who is blind. So what I mean by that is I'm very well aware, and I think people with disability are very well aware of this big kind of gap between what policy says or what the research says or the literature says. And then what's actually happening. So the whole idea of this lived experience, the co-design and the inclusion and those voices are absolutely at the center. They're driving it, they're shaping it is that we're bridging that gap. We're making sure that what we research, what we share in terms of contributions to policy or practice are actually going to make a meaningful difference to those people with disability.
00:08:52
S1: Of course. And Claire, I'd love to touch back on your research for a minute. What have you found so far in the course of your research in regards to these services that are so very badly required for children and young people, but also, what are you looking forward to diving into a bit more in the next months and years?
00:09:21
S2: Well, as we know, or as I kind of said before, we know there's an urgent need for this ability to assess functional vision for children and young people with vision impairment. So what I've found so far, so bearing in mind and very much at the early stages of my.
00:09:38
S1: Of course.
00:09:38
S2: Yeah, yeah. So I'm just beginning. I'm just diving into the literature and I'm kind of finding out what the themes are, what what is coming out of the literature across the board, what are some consistencies that we're seeing? So one of the things that I have noticed is, firstly, I think in this field, we really need to understand the difference between clinical and functional vision. And this is something that's these terms are almost used interchangeably within the sectors. So, you know, when we talk about clinical, we're talking about that measurement of visual functions. So your acuity, your peripheral vision, you know, might be color vision. And they're normally done in controlled environments. So at an ophthalmologist, for example, whereas the functional vision is really about understanding the impact of vision on daily living activities. So this was the first thing that I kind of have been noticing within the literature is that the terms are used interchangeably, but they're actually very different. A clinical assessment is very different to a functional assessment. And at the moment it's clinical assessments that are being used mostly. Whereas as we know these systems require that understanding of the functional impact. So that's driving kind of the need for this space. The other thing that I've kind of noticed through the literature is that there are gaps in terms of what we're assessing and the gaps aren't necessarily isolated. So they're very much interconnected. And what I mean by that is what I'm seeing is that, you know, without agreed standards in functional vision assessment, practice is inconsistent. And that means that without consistent practice, evidence is unreliable and without reliable evidence, planning and funding decisions can't really be made in an informed way. So this is just the first kind of things that I'm beginning to understand as I, as I start my literature review and I start to read around the space.
00:11:47
S1: It's absolutely fascinating. Claire, we're gonna have to absolutely have you back in six, 12 months time, maybe even two years time and get a bit of an update because I'm sure a lot of our listeners will be very keen to hear more about this side of things. As you know, myself, with low vision going through both blind and mainstream schooling. It's super important. A topic very interesting to me especially, but a lot of other people as well. Now, Claire, just finally, we've touched on this a little bit already, but what do you believe universities and research organizations can do to improve accessibility and inclusion for academics with disabilities?
00:12:39
S2: It's a really interesting question, Sam, and it's something that I'm going through the journey of right now. So as I've engaged in this PhD with Monash University, I'm coming up against things that are, I guess, the barriers and the enablers to me being able to complete and engage in my academic journey with a university. And what I've found is that the first thing I would say is really important and that I'm really fortunate with, is that the university is open to honest feedback and actually takes that feedback and makes those changes. So as an example, with Monash University, there were a set of induction modules that needed to be completed online. I found the online platform to be inaccessible, so I couldn't complete those induction modules. So I reached out to my supervisors and I reached out to the graduate research team, and I just shared that feedback. And the response I had was really supportive. I guess is the best way to describe it. So they absolutely took on board the feedback. They went away and they are actively trying to improve the platform. And in the meantime, to make sure that that doesn't delay my ability to complete my research journey. They provided me with a person, a mentor, and a tutor who can actually deliver the modules to me on one on one basis in a way that best meets my needs. And it's that type of flexibility, that type of openness, that type of willingness to make changes to intrinsic systems within the university. That makes all the difference in my experience.
00:14:28
S1: That's great to hear that. It's, you know, been, um, very receptive and quite supportive. That is good news. Certainly. Now, Clare, as I said before, will absolutely have to keep tabs on, um, how everything's going. We'll have you back on the program in six months or one year's time to have a bit more of a chat about your research. As we understand, it's still in its early stages, so we won't dive in too much today, but very excited to have you back on the programme in the future. So thank you very much for your time today.
00:15:06
S2: Thank you. I'd love to come back and thank you for having me.
