This episode of CPH was recorded at the American Academy for Cerebral Palsy and Developmental Medicine’s Annual Meeting in October 2025 with guest Dr. Belinda Deramore Denver.
Dr Belinda Deramore Denver is a pediatric occupational therapist and researcher at Australian Catholic University. Belinda has nearly 20-years clinical practice experience and she received her PhD in 2022 for her thesis on 'development and initial validation of an assessment of visual ability for children with cerebral palsy'. Her thesis provides a new conceptualisation for thinking about vision using observable and strengths-based language to describe 'how vision is used'. She is the principal developer of the new Measure of Early Vision Use.
Belinda describes her biggest clinical and research interest to be in addressing the gaps in current assessment and intervention practices for children with visual impairment.
She also works with children who have strengths in using vision, such as children using eye-gaze technology, and is motivated to share best practice with more children and families, including those with visual impairments.
Because this podcast was recorded at the AACPDM, I do have a brief disclaimer to read: The views and opinions expressed in this podcast are those of the individual participants and do not reflect the official policy or position of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The AACPDM does not endorse any products, services, or opinions expressed.
I hope you enjoy the show.
I am here at the A-A-C-P-D-M in New Orleans and I'm thrilled right now to be with Belinda Dar Moore, Denver. She and I have known each other for seven, eight years now, I think. Yep. Time flies. I know. But I haven't seen you in person since 2019 in Anaheim. Belinda is a occupational therapist of PhD, right?
Belinda :
Yes, that's right.
Jen :
And you live in Sydney, Australia?
Belinda :
I do.
Jen :
And you came all the way across long flight. Yes. To be here at the meeting with us today. Can you tell me a little bit about what you do, where you got started?
Belinda :
Okay, so what do I do? So now I'm in research following. I ended up in research because obviously if you do research you've got to have a research question. What's good is if that follows a clinical question. And I totally had a clinical question and nobody else could answer it for me. So that's how I ended up doing a PhD. It was not on my life plan. I guess. How did I get to that? Maybe, I guess I'll talk a bit about what the clinical research question is related to vision for children with cerebral palsy primarily, but not limited to that. So as an OT I did, I worked in early interventions specifically in the field of vision impairment. And then I moved specifically to the field of cerebral palsy. And there was just no overlap and there was just so little evidence, so little knowledge across both the fields but CP more. And I'm like, I would see parents and I'd be like, so, and what do you think about vision? And they'd look at me. Nobody had ever asked that and that hurt my soul. So that's what led, like we need to know, we need to know more. We need to know how to ask this, how to help.
Jen :
Yeah, I find that incredibly fascinating. I was watching you do your presentation a couple of minutes ago and I turned to the person that was sitting next to me and I was able to tell when my son was six months old that he wasn't seeing. And I went to the doctor and I was saying this and he was like, well, there's nothing wrong with his eyes. And it hurt my soul. Cause I was like, he's looking past me, he's not seeing anything. And we ultimately were able to get a diagnosis, but I felt like it really took a lot of effort to do that. And then when we ultimately got this person, this person teacher for the visually impaired coming into the house and she was like, it's usually the parents that see it first and usually the parents that are coming to us saying need help. You were obviously seeing this in the clinic.
Belinda :
I was,
Jen:
What is it? How prevalent is visual impairment and cerebral palsy?
Belinda:
It's kind of easy question to answer and a really hard question to answer at the same time. So the challenging thing is I guess what is vision and how it's defined and therefore based on that, how prevalent it is makes it challenging to answer. We're now saying in CP that it's between one in two to one in 10, but it depends. There's different aspects to it because there's the eyes, which is what traditionally people think of. But then there's also, there's so much of the brain involved in processing vision and kids with cerebral palsy have damage to their brain. So there's probably so many that might not even have really prevalent, really obvious visual disabilities that are compensating or just because of their motor disorder or intellectual impairment or something else that it's just not being noticed as much. But basically it is a big issue, but it's only just starting to get much attention.
Jen:
And when you see these things, what are some of the things that you might notice and what are some of the things that you might say to parents to help them think about it or maybe pay a little bit of attention to it?
Belinda:
Vision is one of the earliest skills that a typically developing baby demonstrates before you can grab stuff and wave hello and they look and it's such an important part of that interaction between parent and baby. So I guess that's one of the biggest things that you notice First they're not looking, you mentioned that LA wasn't looking at me, it was looking past me. So that is one of the biggest ones. And I guess that's not visually attending, not doing that. It depends on a little because there is a natural development age related aspect for some of the visual skills as well. But that early and the early social smile is based on that.
Belinda:
Look and doesn't every parent love that? So it must be, I guess that's probably the biggest one I look for. Yeah,
Jen:
Yeah. Can you tell me, one of the things I heard in the talk that you gave, actually I think it was the person before you actually, but they mentioned functional vision versus visual acuity. And I was curious, I didn't know what that meant and so I was curious what the difference was between those two.
Belinda:
In general, we tend to talk about either visual function, which is more the body function and structure. If we're thinking ICF F in terms of it's about how the eyes work or how the brain work, how the eyes control movement, all of those kinds of things. Whereas functional vision is actually how you use vision in everyday life. A lot of the ways we measure functional vision though are actually, it's what we actually care about, but it's the participation in activities that require vision. And most of our activities typically require vision. You could do things without vision, but it's obviously a lot harder. So a lot of the time when we look at functional vision, we're not actually measuring vision parts of it we are, but we're not always measuring vision. We're often measuring a whole heap of other things as well.
Jen:
And do you find that, and this is probably a little bit of a leading question, I think I know what the answer is, but do you find that therapists are, especially early intervention therapists, are they starting to incorporate vision into their early intervention practices when they're seeing with kids with cerebral palsy seeing that they might have some visual impairment?
Belinda:
Well, some are, yes. But I guess I'm probably a little bit biased because I'm very focused on the people around me either hear me talk or see what I do, that kind of thing. So I do see it, but there are many, every time we're at conferences and stuff, there's so many people that are like, we dunno what to do, we've never thought about this, what should we do? So it's very much a gap, but attention is being shown on it. Now
Jen:
Are there things that as a family, we had a physical therapist that came into the house and was working with us and coaching us, and then we had a teacher for the visually impaired that was coming in and helping us make adaptations to the environment. And actually I feel like I need to backtrack a little bit, but what Bauer was ultimately diagnosed with was something called cortical visual impairment, which I think is your specialty
Belinda:
Kind of. I personally don't care about the diagnosis I do. It is not the right thing to say. I don't, for me it's actually more, it's how they use the vision irrespective if they've diagnosed, they can be so many different. I mean a kid can have trouble using their vision just because of their motor skills, literally because you can't move your head to look at stuff or even just because you get less practice using your vision because you can't move
Jen:
So it doesn't really matter.
Belinda:
Yeah. But obviously a lot of, I guess the kids with CVI, we know about brain plasticity. We know we can change it. So that's why I am really interested in CVI because I think there's a lot of potential to optimize their skills early, whereas whilst there would still be that if you don't use it, you'll lose it in kids with an eye vision impairment, there is going to be a limit as to what you can do because there's a functional problem with the eye.
Jen:
I wonder if now if you're seeing it's been 20 years and if you're seeing that therapists know more now or is it still the segregated, you've got the Ts that are doing this, the therapists are doing something maybe similar but different?
Belinda:
Yeah, I think I probably don't know all of the answer to that question in terms of it's different in different places and that kind of thing, but I think unfortunately it probably hasn't moved on as much as we want. It is still quite segregated where a lot of the vision stuff happens in the field of education, whereas, and there's not a lot of good talk I guess between education and I guess rehab or allied health, those kinds of services. From my understanding, well, from my experience and what I've heard in other places, I think, and there's many reasons for that. It's hard. And they are very different sort of ways of delivering, well, not ways of delivering service but just service. And I think funding
Jen:
Models too. You've got early intervention funding and then you've got educational funding and there's different tracks for that. And are you seeing this in, are seeing early intervention, adopting more vision related services? I feel like I was a very lucky parent back then that I had what I had. And I wonder if it's more common now.
Belinda:
It's more common, it's still not easy. I still hear stories as a family is needing to spend a lot of time seeking it out or travel a long distance, that kind of thing to get the supports that they want. I think there's more awareness generally so people, even if they can't access it, there is ways to find out. I mean the internet in itself, there's a lot more awareness of what option because there is a lot of simple things you can do, but it is really important that people do pull in experts and particularly get formal diagnoses where possible to understand what is behind the problems in using vision as well.
Jen:
Yeah, and I think, I know for us as a family, that's been something that we've struggled with since the early intervention time. We happened to live in a place that didn't have many people that specialized in it and it was really difficult to get a full understanding of where he was able to see best. I learned terms that I didn't know. I'd have to learn visual field and things like that. And we're still learning where he sees best. But
Belinda:
I think what I often see in parents is that they don't realize that they have a good understanding of things like visual field. It's like they intuitively have learned over time by watching and being with their child about where they need to sit during mealtime and things like that. And I think probably a lot of the stuff that's probably been the most helpful when I've worked with families is actually going, this is what you're doing and this is why you're doing it and it doesn't work when you do it there. Or maybe it's working for mom because you're sitting here in the windows behind you or depending on how it's set up. Whereas maybe the reason it's not working with dad is because we're doing this differently and that kind of thing. And helping families actually see and understand what it is that they're interpreting, learning to observe the visual skills is really quite important to working out what to do.
Jen:
So that kind of leads me to what your work is now and what you were doing with the me view. Can you tell me a little bit about that and where we're going with that?
Belinda:
Yeah, so I guess I, I've developed a tool called the measure of early vision use what we call me view. And yes, it was the work of my PhD. So a few years of my life and a lot of work went into working out how can we actually assess how vision is used, not what's happening with the brain, not what's happening with the eyes, not whether or not my child can reach for something, how we can actually describe how they use vision. So it is also useful not just for kids that have a vision impairment, it's also useful for kids that vision is their strength and you can actually do this assessment and go, they can do this and this and this. Which for example, kids that have a severe motor disability cognitively, maybe they're great and they just need it to be pointed out that they use their vision for this stuff and therefore we need to do this and this. That's
Jen:
So cool. Yeah,
Belinda:
I guess one of the measure is not perfect and we've got steps we need to go, but probably the biggest feedback I've had from it is that it also, it has strengths, faith, strengths based language. So it describes what the child does do, can do rather than what they can't
Jen:
Do, they can't do, which most of us are so used to it. In fact, I just finished a discussion with some folks about how depressing things get because I always end up getting these checklist and I stopped checking the boxes way before I know that I should be stopping checking the boxes. And all it is is describing what he can't do and I know he can do so much more and it doesn't measure that. So this is exciting to hear about and how it works.
Belinda:
So I guess what is, maybe it's just 14 questions with four options for each of the visual behaviors. Basically they're basic visual behaviors. So this measure really is only for describing young kids or kids that do have more severe vision impairment who are in that sort of more basic visual skill sort of grouping. So we've done some validation up to the age of 12 and most kids that don't have problems with vision are scoring a full score when if they're a little bit older. So I guess where we're at is it's not available. We've made the decision not to make it fully available until we've got the next step where we can actually say, this is what the score means. And that's a tricky decision because I talk to clinicians and families that want to use it. And so what we've actually doing is we are making it available for people to use it in a clinical research way right now so that we can also get that extra data so that we can say, if you get a score of this, this is what it actually means. And I think particularly it'll be quite useful for goal setting which doesn't actually need a score, which is why I'm happy for people to use it right now. I mean the kinds of things that families have said is that the kinds of, it gives them questions that they can answer that actually says what the child can do.
Jen:
What's an example? Give me an example of a question.
Jen :
Yeah.
Belinda:
Oh goodness, I should know this off the top of my head. So does your child use their vision over distance and then there's little, the four options, give a little bit of a suggestion. Can they use their vision across the room? Can they use their vision beyond arm's reach or the third option in it is the sort of wording for describing what they can do. And this is similar for all of the items is that they can do or may do, which captures some of that. What families are often saying, well they don't really, but they sort of, and so it gives that option and then there's the one of does not do.
Jen:
So when you're talking about that, it reminds me of our personal experience where there's situations where my son can see in distances when it's a familiar place and it's obvious that he can see very long distances and he knows exactly what's 30, 40, 50 feet away. He will recognize the person walking into the room. But if we were in a very different situation or an unfamiliar situation in a room that's maybe lit differently or has a different rug on the floor or something like that, somebody can walk in, he won't have a clue. And so the may do
Belinda:
Would be, yeah, the may do. I guess the other the does do has sort of does do, and I really probably should have looked at it before I talk to you. I don't don't actually look at it every night before bed at the moment, but it does do or does do with some limitations. And so some of those sort of response options do give and without it probably a little bit more chatting and without a bit more double checking what the exact wording is. I don't know whether based on what you just said, whether he would be or does do with limitations or is the major can do. But yeah, some of the other visual behaviors are visual attention to, so we are looking at to faces and it's not measuring visual acuity, I it's visual attention to faces. It's visual attention to toys or objects. There's also one for books and one for digital screens as well, which has been quite interesting because when we have talked to parents of typically developing children, they don't like that question at all because they're like particularly for, well the very young kids, they're like, oh, the guidelines are not to show you. Even though I'm pretty sure every parent does possibly, but whereas parents of children with cerebral palsy have as said, no, that's a really important item to be in there.
Jen:
Yeah. What is the rationale behind that? I'm curious.
Belinda:
It's the World Health Organization activity guidelines. So kids under two are not meant to have any screen?
Jen:
No. I mean the rationale for the families of people with cerebral palsy, why do they want it in there?
Belinda:
I think because of, well, I don't know because I'm not a parent. I'm trying to remember the exact, how much that's been explained. I think there was, because it is a medium that works.
I can't remember the exact wording they said from my own perspective and sort of understanding vision, obviously things like an iPad, they have a backlight, and we won't know this until the next stage of the research, but I am pretty sure that visual attention to a digital screen would be a much more basic skill than visual attention to say a book you wouldn't because the light from it or the flickering from TV shows and stuff that attracts attention in a different way. So I would expect that that would be an easier
Jen:
Skill
Belinda:
And you would demonstrate it earlier.
Jen:
So a parent would be, I guess I'm asking, maybe it's dates, my son and me, but we didn't use the iPad or anything like that when he was an infant, so we just didn't have that screen. So I'm like, I can't imagine. I don't remember sitting in front of a screen. So
Belinda:
I think probably, and I don't mean to date you either, but we probably, most people have a phone in their hand all the time now. So I think now also kids have got a lot more opportunity to see it. And also then things like familiarity and seeing things probably comes into a bit as
Jen:
Well. It's kind of cute now. I crack up every time I pull out my phone just to do anything. Bauer asks me, who are you calling? And I'm like, God, he's more interested in my phone than I'm, which I guess is okay. I don't know. But yeah, I remember for so long you were not supposed to be, like you said, the World Health Guidelines, but I never really thought about the context of it might be a good medium, it gives them the opportunity to practice some of their skills. It
Belinda:
Is, I mean it's not at all related to what we're talking about, but it was also quite interesting to hear in the typical developing study that so many parents weren't using screens that which made me feel a bit better about
Jen:
Society. Right? As far as what's the next step with the me view? What are you heading with it? What do you need?
Belinda:
So we need some more data from the parents of children below the age of two, which is the trickiest time too. Because everything, if your child has been flagged at being at high risk or receiving a diagnosis, we understand that that would be quite a tricky time. And a lot of those kids are involved in studies and stuff already. So, so far we haven't got very many of those, but that's probably the group of children that are most likely to benefit from these kinds of questions. So we need to access some more of those children and also some more of the children that are a bit older that have the severe vision impairment. The reason that we need a few more numbers is what we want to do as a more complex analysis. Basically, that will enable us to say, alright, so the visual skill follows is comes before this one, which will help with things like goal setting and planning intervention, and it will give us a score that actually means something.
Jen:
So if somebody were to take it right now, which you're going to offer a way for people to take it right now, what would they get back? What would their takeaway be? I guess what I worry for families is that they would get something that they don't have any, what do I do with this? Now I've got the score, but what do I do with it? So what happens if they take it
Belinda :
Now? So the way if they take it now, it won't, they can add it up if they want, but it doesn't actually give them the score because it is a meaningless score. Well, it gives them an opportunity to contribute to the future, but that's the next step back would why would they do it? So I think answering the questions can be quite helpful to realize what you do know about your child's vision, depending on the age of the child. I think it can be more useful for some parents than others. And I guess that is the challenge. The way it's set up at the moment is you can print out your answers. I was just going to ask, so you could take it to your clinicians or to your eye appointment. If anybody did do it and they wanted to email me and ask me, I would always respond to those emails as well.
But at this stage, yeah, we can't say that if score, if you added them up and you scored say, a 36, I can't tell you that that means you're going to have CVI or we don't have any of that yet. As soon as we do this next bit, then other researchers will use it in their research and then we'll start to have a lot more information about what it means and how it's useful. But I do think do, and it's not just me being a wishful researcher, I actually, I'm terribly terrible at wishing for research, but from what I have heard from a number of parents, not all parents, but a number of parents, is that it actually, it's not fun, but it was a useful thing to process to go through and to think about. And I've also had a number of parents comment that it's got them thinking. And I do wonder whether just even completing it will be enough for some parents to start to think without intervention some of the things that they might do. But yeah,
Jen:
That's fascinating. I was thinking about the idea of being able to take it two year TVI or to your occupational therapist or your physical therapist. Are there resources out there that families can go to? Let's say they're answering these questions. I know one organization that I highly respect is CVI Now, they've really compiled a tremendous amount of amazing
Belinda:
Resources. Absolutely. They've got a lot on their website. They've got some fabulous parent advocacy groups. So that would be a fabulous spot to start. That would be the first one that I would recommend, particularly in the United States where we are right now. I mean for the really young babies, there's some other things like little Bear Sees.
Jen:
I remember Little Bear Sees, it's been around for a long time.
Belinda:
It has been around for a long time. They're probably the first ones that jumped to mind. But I mean if you Google, there is a lot there. There's not one particular thing that is sort of a must do. It is an evolving space. But I think CVI now would definitely be a great place to start. There's a couple of big organizations in the UK as well, and the exact names of those allude me off the top of my head, but they've definitely got CVI in the title. Actually on that, there is one thing that I think is important to acknowledge is the, what does CVI stand for? You've used the word cortical vision impairment, a lot of, and most that has been used a lot in the United States in much of the rest of the world. They use the term cerebral vision impairment.
Jen:
Didn't know that.
Belinda:
And it's starting to change here as well because in reality, many children that have CVI have damage to the cerebral cortex. Yeah. So you kind of got to get your head around.
Jen:
Thank you for the correction. I appreciate it. No, I think that's really helpful. I obviously didn't know that.
Belinda:
It depends on what you look at. There are, there's some new definitions coming out. It's a changing space right now, but I think it is important. And other times people refer to it as brain-based visual impairment, neurological visual impairment as well.
Jen:
Yeah. I think you had mentioned ocular earlier,
Belinda:
So ocular being the eye, obviously the optic nerve, which you mentioned as well, is between them. Some people call that ocular, some people call that neurological. There's also, it's not a one or the other. So there can be a lot of overlap
Jen:
Between them. I think, like you said earlier, it's not always CVI, this measure is looking at any, it's just how you're using your vision. So it doesn't really matter what the actual etiology is.
Belinda:
Yeah, that's That's where it's aimed at.
Jen:
Yeah. And I guess to offer a little bit of hope for families, is there hope? Does vision improve?
Belinda:
Absolutely. Well, okay, so I guess we don't have good evidence. So my experience of what I've seen is it does improve how much of it improves just with a bit of age and whatever else is a little bit hard to know. But we've just had, so one of the other papers published here was on the visible intervention study that is just a pilot study, but an RCT that's looking at a visual intervention for kids with CVI and yeah, they're absolutely of making changes. So that's really exciting. It's not surprising. It's the same. It's the same as the motor. If we focus on it early, the brain has the ability to change and improve. So I would love to see more happening early.
Jen:
Yeah, well, let's get this out there and have more families take this so that you can get it validated the way you need to and be able to use it more in research and develop more interventions and get this going.
Belinda:
Thank you.
Jen:
Well, it's so wonderful to see you in person. This is amazing. It's been too long.
Belinda:
It has. And we did present a poster together.
Jen:
Yes, we did. Why don't we talk about that for just a second. So Belinda roped me in to a really neat honors project that your student, Amber started, and now we will be submitting for publication, looking at which whether early interventions did include vision. So you're much better at speaking about it than I am. I was the family member who provided that voice of lived experience as we went through this.
Belinda:
Absolutely. And validated the fact that it was an important question to be asking. So yeah, basically we have all these green light, or when we say green light traffic lights, green light, an intervention that we know works and you should just do it. And we have all of these in early intervention for motor skill, some of the constraint therapies, the tasks that there's a whole range of interventions that we know. The question is, the question that we had was, are they also effective for kids with vision impairment, because a lot of the time they're excluded from studies and they're excluded for very valid reasons. It does add confounding challenges to the research process. There's problems with the outcome measures. So we really had a big deep dive into what was out there. We couldn't come up with an answer as to are they effective for, because not enough kids were included or it wasn't mentioned.
There would be a comment in the discussion or the results section that just said, and the child also developed tracking, but there was no mention of whether or not they had a vision impairment so that you can start to wonder about some of those things. And we also talked to researchers in the field and got perspectives from them and together. And you were involved in the interpretation. We came up with some questions to help guide thinking about this field. And one of them is to, if you know an intervention is effective and the child also has a vision impairment, well ask the family what they think as well.
Jen:
Yeah, I think maybe it's a pun. I don't know. Shining a light on the topic and highlighting it for people so that as you are starting an intervention with a family, if you're a therapist and thinking about, Hey, how is this baby using their vision and will this be as effective or how can we modify it?
Belinda:
So a large part of it was looking at the interventions and going, what is the active ingredient? What is the thing in the intervention that makes it work? And if there is lots of observation or something that's quite visual, does that mean we can't do the intervention or can we actually still adapt that? So I think probably most interventions we can do, we just need to consider it and potentially a bit more skill in a few more people to actually know how to make those changes for the best. Yeah.
Jen:
Well, I think it's a very important topic. It's just a no brainer. But what I do really appreciate is that I do think that the therapists are incorporating this more and they are considering it more, at least right now at this conference. I feel like I hear about it
Belinda:
More. We had a stream for vision at this conference. That's huge.
Jen:
Yeah. I thought that was really cool. And I don't recall when had that before. Maybe I'm wrong, but I remember over the years, I always like to go to the courses on vision because that's impacted my son's life. So I like to learn as much as I can and how to help him. But I feel like this time, especially the one that I just went to hear so many studies that was, what was that five that we heard? Just five in a row of studies. And I thought that was, to me, that was really impressive to be able, it was to hear those presentations, right. One right after the other. And I'm sure there's a lot more in this conference itself that I just haven't even caught. There's just so much going on.
Belinda:
There's a lot going
Jen:
On. Yeah. Yeah. It's a little bit overwhelming, but it's a lot of fun. And if you are listening to this podcast and you ever consider coming to this conference, it is a wonderful way to learn alongside the providers.
Belinda:
Yeah. Learn and network and yes, definitely putting down some pathways for new collaborations. Absolutely. To move the field forward.
Jen:
Absolutely.
Belinda:
We're trying.
Jen:
Yes. Well, I'm so grateful for you trying and hopefully we can move the needle forward for me view and for you And for families. For families. Yeah, I know. I know. But we have to get it out there, right? Yes. So thank you, Belinda. I'm so grateful for your time today and that you came all the way around the world to be here, to present. This is amazing.
Belinda:
Yeah. Thanks Jen.
Jen:
As a post script for this podcast, I encourage folks to take the MEVU that we discussed today and print it out to discuss with your TVI. Belinda is in need of more information about several groups of individuals: those under the age of 2; GMFCS V’s (more significant motor impairments; and generally those with any visual impairment.
Thanks for listening!