Missing School

Transcript

Simone: Welcome to the Childhood Stroke podcast series. In this episode, we're talking about missing school and the impact of stroke on the education and social experience of kids. Each child's stroke is unique. Some may recover quickly and return to activities missing minimal school while others may have a long hospital stay, and if they live rurally, they may also be far away from their school and friends. Even after the initial stroke diagnosis, many children continue to have ongoing medical and rehabilitation appointments, which means that they may miss periods of schooling months, or even years after their initial stroke.

Today, I'm really excited to have Megan Gilmour on the podcast. Megan is a social innovator and education trailblazer, Megan, co-founded MissingSchool in 2012, after her son's two-year struggle with school isolation due to illness. And as a Churchill policy, and Deakin University Honorary Fellow, she persistently advocates for systemic school connection and support for students with complex medical and mental health conditions and is the 2025 ACT Australian of the year. Congratulations, Megan. Thank you so much, and welcome.

Megan: I'm so delighted to be here today. Thank you for having me on the podcast.

Simone: No, thank you for coming along to share more about MissingSchool. So I wanted to start off with just sharing, if you could, about MissingSchool, and how it all came about.

Megan: Yeah. Great question to kick off with so MissingSchool -- as is mentioned in the Intro there,-- started as a result actually of my son's lived experience of a critical condition of 2 years duration. It was a really complex medical situation for him, and very difficult, so he missed close to 2 years of school. That was 15 years ago. I'm happy to say, he is a very healthy young man, just turned 25 on the weekend, so we had a fantastic outcome.

But of course, what we discovered through that was the longing for schools that these children can experience when they're in - let's call it medical trauma. It's not just the condition itself, it's the medical treatment that goes with it, but also the school isolation.

And this is the thing that I noticed most with Darcy, was he was prepared for, in fact had no choice in the medical matter, but what he was telling us was that he wanted to be at school. He missed his friends, he missed learning, he missed the routine of school and the belonging.

When we think about it, school is a child's community. And so, when he became unwell - , and I tried very hard across that time, in fact, I turned to school to try and save his life, to give him hope - and when I came out of it, knowing all of that, myself and two other mothers from Canberra started MissingSchool in a Canberra lounge room.

It was, indeed, to keep children with medical conditions and mental health conditions connected to their classrooms, and we couldn't find anyone else who was doing this. We couldn't find any data on how much school is missed, and how often, and which illnesses and diseases cause missing school. That is still true today. But this grassroots response has evolved into a national mission, really about equity in education.

These kids have so much to contribute and sure we can see it as us helping them, but I like to look at it as their contribution to their community, them being seen and heard. That's what we need. And of course we want them to get the best education, and of course, social connection that they can, especially given what they're prepared to face in their medical or mental health, and the two go together, situation. So that's where we started. And that's what brings us up to today.

Simone: Wow! Thank you for sharing that. And such a personal, I guess motivation for you in starting MissingSchool, and really interesting that there's just not a lot of data. It's kind of really fascinating that it's such a common occurrence for kids that have medical conditions or mental health conditions that are missing school. But there's just not that data there to even support what you're seeing and what you've experienced personally.

You talked a little bit about it with your son. But what is the impact of missing school for children? And I guess the second part of that question is, why is staying connected to school so important for kids and teens with chronic health concerns similar to your son's experience.

Megan: Yes, well, this is what it's all about. So that invisibility that you just mentioned, you know, not having the data means that children who aren't at school remain invisible as well, because there's no data, because there's no policies, and they're not seen. So, we have this sort of vicious cycle in terms of their invisibility.

So, what is the impact? It's no surprise to anyone that missing school would cause academic challenges and we know from evidence and research that there's no safe threshold for school absence. So, anything more than 10%, (I would say, consistently) of school missed, that's often or for long periods across the whole school life, is problematic, both academically, but also socially, emotionally, and from a mental health perspective.

So that's the first thing we need to know is and let's translate that. Translate that into days. That's five days in a school term, 10 days in half a year or 20 days in a year. Anything more than that can cause challenges for kids.

So,that's the first thing, academic. But often it's the social isolation and the emotional impact and trauma of the illness itself and treatment that is also causing, you know that separation, that lack of belonging, not being seen as a person, being seen as a condition not being part of a community and I guess suffering in silence. We say “on the sidelines”, they're basically “left on the sidelines”.

And of course, there's developmental delays that can occur and mental health issues, even if the genesis of the situation comes from a medical concern. Mental health and anxiety are a big factor and feature here and we know the kids who have medical conditions are also bullied at higher rates than their peers.

We know that they don't perform as well, are three times more likely to perform beneath the basic minimum standards in NAPLAN, for example, if we want to measure it that way. But all in all, it makes today tough and tougher. And it also means that they're not getting the opportunity to reach their potential into adulthood. So, these issues we're talking about can persist into adulthood as well.

And so why is it so important for kids with complex health situations to stay connected? Staying connected is the first way to avoid or mitigate all of those things we've just mentioned and the earlier, the better, the earlier the intervention, the greater chance we have of creating number one - participation, or inclusion, and school access.

And whilst we don't know whether the type of connection that we've been making -and we'll get to that - helps with academic performance, what we do know is you have to be present. You have to be able to be there to have your academic journey, and also maintaining those very important relationships to kids; playing, being able to have as much of a normal experience as possible. So all of these things are, you know, front and centre of maintaining connection throughout.

So, we can't just wait until they're well. It's one of the things we say. We need to be able to maintain that connection early and often. I suppose, as adults, honour the journey that they are on in terms of the heavy lifting they're doing to stay well, to get better if they can. To take their medicine, their treatment. The least we can do is give them the hope of a better future and a better experience today. So that's my summary of connection, and why it's important.

Simone: Thank you. Yeah. Some incredible points there around just the importance of that connection. And I guess when students do return to school, that can be also a big transition and obviously MissingSchool is all about trying to support that getting back to school - being involved in the school environment.

And I love that comment you make about ‘don't wait until you're well’. That's really good I think. Do you call it your slogan or your - you know - it's become a bit of a phrase that you use. I think it's so so important.

Do you see any challenges, or what are the biggest challenges that you see for students when they do return to school. Perhaps it could be after a long absence, due to illness, like childhood stroke.

Megan: Yes, yes. So, we do see challenges. We've collected surveys and long form interview data from over 1,500 parents and teachers. And one of the things that we know happens the most in what we call these transition periods - and there's there are a few transition periods - but students have and experience extraordinary anxiety. And this is not surprising.

Even as adults, we know when we're away from situations and we return to them. That can feel a bit uncomfortable, you know, and as kids, you just want to be normal and fit in. So now you're the new kid back again, and people might be looking at you children with complex conditions or who've experienced a complex or critical health situation, can look different. And certainly, they've had often a very different experience to other children. So, there's that feeling of separation, even if you're present.

But anxiety is one of the biggest ones. Of course, then there's other things, such as academic gaps. And that can also fuel anxiety as well. And fatigue. But the fatigue from the condition itself, or also, perhaps, medications that can cause that sort of thing.

So social reintegration is tough. Friendships might change, and confidence is reduced. And schools often don't have the clear guidance to know how to support that re-entry. So you're just back. And it's business, as usual, when of course, it isn't just business, as usual for that that young person. So they're the things that we see.

It's not only just returning back to school after a long absence. It can, for some children, be in and out of school. You mentioned clinic visits and things like that - medical appointments. So, you've got - we call it, between home hospital and school. So, there's all of those transitions. Some students in these circumstances spend a lot of time at home just with their condition, but also recuperating, and so on.

So, then we've got transitions between school years. Those can also create challenges and transitions between schools and in high school transitions between teachers. So, you know, these can really play into a young person's life who's experiencing a chronic or medical condition or mental health condition. And this is also why maintaining connection makes sense.

Simone: Absolutely so many transitions there that you've mentioned where that connection would be so helpful. You know we work and support children that have experienced stroke. Have you had any experiences in your organisation of working or supporting children and families who have been impacted by childhood stroke or even acquired brain injury, and I guess, is there anything you have sort of to share around those experiences? If you can.

Megan: Yes, so I tapped into my team impact director to double check that. Indeed we do, and it won't be a surprise to you that one of the things that stands out is the hidden impacts facing these children, that invisibility often of what they've gone through and cognitive load memory or processing. So these are real and structural issues, if you like. They're not imagined so they're definitely in the picture.

I mentioned also, you know, that feeling alone, and the mental health and trauma, and the separation of one's experience compared to others that sets you apart in a way that doesn't feel good. So that's also a feature. And that anxiety.

So, the invisible disability issue might look fine. But facing those hidden challenges of fatigue, sensory issues, memory and processing and the mental health impacts. And often those impacts are underestimated because they might not be as visible on the outside.

And, you know,every child’s circumstance, even in a stroke situation, is different. So, I suppose we can't put a one size fits all on that. So, there are also those individual personal circumstances. For example, one student who had experienced stroke was also on a cancer diagnosis as well. So we also point these intersectional issues out when we talk about children we support as well, because they're never only dealing with one thing. And I don't mean it could be multiple medical situations, though that is true, too, but also in their family situations. As you mentioned, rural and remote you know, being separated from family. There’re all sorts of things that can go on. So that's also why we talk about not having that one size fits all.

And the other important thing that comes up for students affected by stroke or acquired brain injury, and what stands out in their school experience, is that school systems find it hard to navigate, and families report, you know. difficulty in getting what they need for their young person, their child.

Having to be the person or the people who create awareness for educators and try to play the intersection between, I guess the medical situation and school, and often disempowered in that process as well. So, the interrupted learning, emotional distress, mental health issues, are at play as well. Here, in a situation where schools might not know what to do, or teachers might not know what to do. So that's a complexity that sits right at the centre of these stories.

Simone: Thank you for sharing more about those experiences. I would love to hear more about the support that you do provide students more broadly, and families as well. Tell us a little bit about that. You touched on, I think your colleague, your staff member in the impact program, but I'd love to hear a bit more about what support you do offer.

Megan: Yes. So MissingSchool has, is an organisation vested in shining a light on students with complex medical and mental health conditions and chronic school absence. We set out to actually showcase what it could look like when children remain connected, and we've used technology to do that.

So since early 2018, late 2017, we've been placing telepresence robots into the physical classrooms of these students who are chronically absent, agnostic to the condition that caused that absence and real time connecting them into their classroom from wherever they are, whether that's hospital, clinic, or home, so that they can take their lessons in real time alongside their friends and their peers, with their own teacher in their own school community.

And so, all the things that we talked about a moment ago now have a solution. You know, there's a solution for those, because the child is now in the classroom, and they can actually move the robot around from wherever they are as well. So the robot will move in the classroom. Imagine a screen on a stick with the base and wheels. And so there we.

And we call this - now we've dropped the term robot - and just call it telepresence, because the solution to absence is not attendance, it's presence, and that can be virtual if it's not in person. We can do that in the 21st century. It's really quite simple. And the teacher can just teach once.

And those real time interactions mean when you're out of school, you're still there as much as you can be, and it's not full time or all the time, but as much as you can be. And so those friendships are being cultivated and maintained, and sometimes you're physically in the classroom, and sometimes you might be in the classroom via the robot. But all in all, you're there.

And so, it makes a huge difference, and our data shows that once a child is at school, all the things that a school does kick in, including the maintenance of the relationship between the family and the school as well. So that also gets brought along on the journey as well. So, this makes it a lot easier for parents when it works well. It reduces the burden for a parent in trying to maintain school connection or pretend to be a teacher and a home schooler. So yes, it's, really a very cost effective way to make a huge, huge difference, and it reduces anxiety as well.

Simone: Amazing, amazing, the world we live in, that we have this innovative technology. I love that there's a solution for this that you've found. I'd love to hear a bit more about how the students, the student that might have the medical condition that's been missing school that's there utilising the robot. But also, the peers around them. How they respond to the robots. And also how the teachers, how do the teachers respond? And how do you find their experience as well?

Megan: Yes, these are all great questions. So once people get over the fact that there's this piece of technology in the classroom, they might not have seen before. And it's a bit, wow. It just normalises that person's presence that way. And so the technology is forgotten about. And the relationships can take place.

So teachers who have even been reluctant to use the technology or resistant to using the technology when it works, come back and say that was so much easier than I expected, and then they've witnessed obviously their own capacity as a teacher to engage with that student which shows them that it's possible.

And they also witness what it means for peers in the classroom. And that's the really, you know, really special feedback, which is the way that social isolation is addressed through social connection and through whether it's sitting in small groups, being engaged in a particular activity that the teachers set or whether it's being able to attend an assembly in one case dancing at a graduation. You know all these rites of passage that are so important in school as well. School isn't just academics, it's social, but it's also, you know, a rite of passage through so many experiences that we can address with this.

And so, the peer connections are one of the things that show up or are reported by the parent and the teacher, and teaches us one of the most fundamental benefits of having telepresence - we know how important peer relationships are to everyone, but to young people in particular. They're, you know, as they go through school, and they're forging their relationships on their own terms. And of course - witnessing the reduction of anxiety is another part of that meaningful connection. There's no other way to put it.

Really and often it's the case that school subjects that are not maths, or English or science are some of the ones that can often be chosen for participation. So, we also need to remember that. you know, it's also what the student wants. And that a prerequisite to any kind of academic performance or any academic progression is to be there. If you're not there, there is nothing. So, while it might not be a perfect solution, and it's certainly not the whole solution, it really sets the foundations for so many other things just to be there.

And I just need to add to that, MissingSchool is now working on scaling this, not by providing the technology, but by activating schools’ own technology for this. As we saw in Covid, we have now - and post Covid - ubiquitous use of video conferencing technology. Here we are. And that this is already available in schools. So, you know, what other types of systems could schools use? That is just part of their everyday operation that becomes business as usual for students who can't physically be there. Yeah, it's a pretty exciting time for us actually.

Simone: Yes, and so really, that sort of advocating and supporting, working with the schools to look at other options. If a robot's not the right solution for that particular school. Yeah.

Megan: Yeah, or even just to move away from robots. The robots that we use are no longer on the market. You know, technology changes and global production and things change depending on the way businesses go and take themselves. But we decided pretty early that our whole aim was really not to ever be the providers of technology, I mean, who could service every school in Australia, what one organisation could do that? None. So. it's really to be able to have every school be able to find a solution that does not involve leaving a child out of their education and social connection completely, you know, and to make that synchronous so that it's real time in the classroom.

Simone: It's going to be exciting to see yeah, where to from here as well. I'm sure that as you keep working in this space more and more gaps and needs also become uncovered.

Megan: Yes.

Simone: And if you were to give like one message to teachers, and perhaps principals as well, who want to better support a child, and this might be a child who is missing school, due to any medical condition or mental health condition, but thinking, I guess, for us in terms of childhood stroke, how could they better support a child in terms of attending or returning to school? What would it be? I think you kind of touched on a few things there in terms of the work that you'll be focusing on in terms of supporting schools. But is there anything else that you would suggest in terms of messages.

Megan: Indeed. So I'll start again with, don't wait until they're well. We need to intervene early and act early. And, that these children are covered by the Disability Standards for Education and the Disability Standards explicitly covers any condition of the body and it's quite comprehensive in its definitions and what it covers. And the beauty of it is that it's a national regulation under the Disability Discrimination Act and it's designed to create an equal opportunity for people who have a disadvantage that would not be giving them that level playing field.

And so it's trying to create a more level playing field for the young person, and it applies to every school in Australia, so, regardless of where you are, what state or territory that you're in. What school sector you're in, public, independent, Catholic or faith-based school, the Disability Standards applies, and so that makes it a very powerful go-to for parents, because it is the language that schools speak.

So, if a family wants to, and should, I'm going to recommend for their child in these circumstances, stroke, for example, where we know that a lot of school is going to be missed, we know that they're going to have challenges (we've already talked about those even when they're at school physically) -- so, an Individual Learning Plan is the first way to go. And that is a document that the school and family agree that makes these provisions, these adjustments that might be needed for safety reasons as well, and so on, but also to recognise that this student needs more help.

So that's the first thing, getting an Individual Learning Plan. And the family can also ask the questions like, what adjustments can we have through the Disability Standards for Education? As soon as a school hears that, if they're not associating stroke, for example, in this case with the Standards, they will be now.

Because as soon as they make that connection - because often the standards are not associated with a medical condition, or some conditions don't come to mind in terms of the Standards, but once we make that connection, the school will know.

And that means is that the young person can get adjustments that will make a real difference. It could be extended periods of time for an assessment. It could be special provisions in terms of the use of assistive devices for example, telepresence. It could be where they're seated in the classroom. How much time they have, what breaks they can take, all sorts of things. There's many, many types of adjustments that can be made.

So, I think these are the things that I really like to focus on. And in the development of the Health Plan, the Health and Safety Plan and the Individual Learning Plan is, that the student's voice is represented. That they have a say in what's important to them, and it's always going to work better if they're engaged in that process and a part of that process.

So, those are the things that I think are really powerful for families, and it's quite surprising to us how many students or families who come to us for support for missing school. And how many of those students don't have an Individual Learning Plan, despite their condition and the amount of school that they're missing. So I think that's kind of first base for us.

And you've got a really powerful framework through the Standards for access to the classroom, access to the curriculum, learning alongside peers, use of assistive technologies or devices to assist and additional specialised support. That's what the Standards can enable through adjustments. And the school can actually get funding from government once they make those adjustments. So, you know, we often know that resourcing can be an issue. So that also helps the school to get the resourcing that they need to do to make the adjustments that are being documented.

Simone: Thank you. You've covered so many things there, I think, around both the teacher and principal, but also, then the families. Sounds like you do really have that sort of advocacy role as well around supporting families to be able to advocate for their child at school. Is there any final kind of advice that you'd have for a family. Perhaps it's a family who has a school age child that's had a stroke, and it's looking at you know, significant period of time off school. Is there any final thing that you would share? I think you've covered lots of amazing tips, but just curious if there's anything else.

Megan: Well, I think the reason I talked about families in terms of the advice to teachers and principals is that it is often the family that's trying to do it - it is the parent or carer that is trying to do this. And there are amazing teachers and principals out there. We meet them every day,. And often they won't be making that connection to what the school is regulated - has a regulated obligation - to do, even with the best of intentions.

So I think my final point to make is to carers out there and parents is, no one knows your young person, your child like you, and their history, and has that information, that knowledge, that experience to bring to bear for advocacy for that young person. Because the adjustments in the plan that I mentioned a moment ago will need to be changed and updated across time, as things change and they typically do and can change very quickly in these circumstances.

So, you're not alone and certainly there are fantastic organisations like ours, and I mean that collectively, to be able to support. But you also have those amazing, the regulations, and the opportunity to be able to advocate, that is going to make so much difference to this young person's life. And to help teachers and principals to do the job, that they can do better for that young person.

And so, if we can sort of get that win-win situation, the student wins, the teacher and school win, and the family wins. You know, that's the golden triangle, if you like. And really, that's what we're working towards. That everybody comes out of this better. And advocacy is absolutely the key to it. And communication is the key to it as well.

So, you know, going in all guns blazing to a school is not going to be the best strategy. And it can be frustrating if you can't get what you need for your child or young person. But often these levers and this language -- and getting that compatibility of language with the school in terms of the Standards and what you can do with Individual Learning Plans, and keeping that documented clearly and the communication flowing -- is a winning formula, even if it's not getting you an ultimate win, it's better than what you'll have if you weren't doing it. So that's probably my last important message.

Simone: Yes, such valuable advice, Megan. It's been such a pleasure to have you on, and to chat with you more about MissingSchool and your mission, and I'm curious to know, how can parents that might be listening to this episode get in touch with you and your organisation.

Megan: Oh, thank you for that. Yes. So missingschool.org.au MISSINGSCHOOL.org.au, and we have a helpline. So, our support team takes families and schools through the processes of better support for students with complex or chronic health or medical or mental health situations, and whether it results in a technology placement or not, we always say that advocacy, as I shared before has hopefully made a difference to that young person's life. So, we're very, very happy to be contacted. And we'd love to hear from people if they need that support.

Simone: Thank you so much. And I think one thing that people may have questions about that I've just thought about myself. If there is a technological solution for a student, what is the funding process like, I think it's something that no doubt parents might be thinking about. This sounds great. But what are the options? And I guess it does depend on the solution that yourself and the schools and the families come up with.

Megan: Well, from our point of view we - and we're still continuing to provide robot placements at the moment that will be starting to wind that back in the near future - it's free. Anything that we do for families is free to families.

So, for schools, and this is part of the reason why we're advocating for telepresence that schools have, and -- fingers crossed -- we'll be having a larger project soon to try all those different technologies with schools and find out what works; what cameras you might need in addition to a normal camera on a laptop, or you know, does Teams work better than Zoom for this? And what are the regulations in those particular schools? What systems do they use that are endorsed by their education departments?

So, we're excited about that. But our goal is to make this an everyday thing in schools, and that means the school will have that technology already, or it will be very low cost to obtain, and should be provided. It should be free to the families. If it's a private school or a faith-based school, then the fees should cover a two-way connection, because the technology should already be in the school. And if it's a public school, well the technology should already be in the school, but, in any case, we assume would be quite low cost for them to obtain if they didn't already have it.

We do acknowledge that some students don't have internet at home or don't have a device at home, and we'll be working to build on our partnerships that have enabled those things to be put in place as well so that that is not a barrier.

As we say when we're engaged in government advocacy or other advocacy, and we hear that as a barrier, our first answer is ‘at least we know that student doesn't have those things’. It should not be a barrier, it should not be a full stop, you know, ‘Oh, but what if they don't have it’? Well, that's ‘now we know that’. You know, that should not be the full stop. So, we don't see that as the full stop, we endeavour to make sure that student can get that connection on their side as well.

Simone: Look such important work you're doing in terms of equity of access to education for kids that do miss school due to medical conditions. It's been so wonderful having you on. And yeah, just thank you to you and your team for the incredible work you do to keep kids connected to learning and to their classmates. Thanks for coming on.

Megan: It's been amazing. Thank you so much, Simone, and a big shout out to Stroke Foundation for all that you do and the work that you do that's so important in our community. From us to you, our gratitude. And we love working together with organisations like yours. We know that this kind of partnership is going to shift the dial, make change for these kids across the country. However long that takes. But we're here for it. So thank you so much for having us on today.

Simone: No, thank you. All of that is right back at you as well. So yeah, I think our strategy this year. Our 3-year strategy is really stronger together, and I think it speaks just to this necessity that we all need to be working together. It really will lead to much greater impact, and being able to reach the people that really need our support and services.

Megan: Yes, here, here.

Simone: If you found this episode helpful, please share it with your family, friends and colleagues. Subscribe to the podcast to be notified about future episodes, and leave us a review. So more of the childhood stroke community can find us.