What is the social model of disability and why is it important in child mental health?
12 May 2021, 1:00 pm to 2:00 pm (AEDT)
Sara McLean, Chris
This webinar was held on Wednesday, 12 May 2021.
Children living with disability are affected by the same factors that influence the mental health and wellbeing of other children. However, there are additional considerations that can help practitioners and parents separate a child’s social and emotional functioning, communication and behaviour from their disability, and better support them.
This webinar explored the social model of disability, specifically the three additional factors that influence a child’s experience of disability – the nature of the condition, its impact on daily activities and its impact on participation.
Drawing on two case studies, this webinar:
- Identified how disability can positively and negatively influence children’s mental health and wellbeing
- Explored how the social model of disability can inform approaches to practice and parenting to better support children’s mental health, wellbeing and development
- Emphasised the importance of seeing the ‘whole child’, not just their disability.
This webinar is of interest to professionals supporting children living with disability, and/or their families, including disability support workers and allied health professionals.
This webinar was co-produced by CFCA and Emerging Minds in a series focusing on children’s mental health. They are working together as part of the Emerging Minds: National Workforce Centre for Child Mental Health, which is funded by the Australian Government Department of Health and Aged Care under the National Support for Child and Youth Mental Health Program.
Featured image: © GettyImages/monkeybusinessimages
Audio transcript (edited)
JACQUIE: Hi everyone and welcome to today's webinar. What is the social model of disability and why is it important in child mental health? My name is Jacquie Lee and I'm a communications officer and digital publisher here at Emerging Minds, thanks for joining us today. Now before we begin, I would like to start by recognising the many lands on which we meet today and pay respect to the Aboriginal and Torres Strait Islander peoples, their ancestors and elders past, present and future from the different First Nations across this country. Emerging Minds and CFCA acknowledge the importance of connection to land, culture, spirituality, ancestry, family and community for the wellbeing of all Aboriginal and Torres Strait Islander children and their families. Now, today's presenters and I are joining you from the traditional country of the Gaurna People on the Adelaide Plains whose land extends from Port Wakefield and Crystal Brook in the north to Cape Jervis on the Fleurieu Peninsula in the south, and across to the Mount Lofty Ranges in the east. So before we begin, I'd like to invite you all to take a moment to acknowledge in the chat box the traditional owners of the land from which you're tuning in to this webinar today. Great, so today we're going to unpack the social model of disability and how it can be used to support the positive mental health and wellbeing of children living with disability. By the end of today's webinar we hope you'll be able to identify the ways in which disability may influence children's mental health and wellbeing both positive and negative, understand the social model of disability as it relates to nurturing children's mental health, social and emotional wellbeing and development, to describe how the social model of disability can inform practice approaches which better support children with disability and their families, and to recognise the importance of seeing the whole child, not just their disability. It's now my pleasure to introduce today's presenters. Dr Sara McLean is a registered psychologist, author and member of the Emerging Minds content development team. Sara also runs a private practice and consultancy in the areas of child protection, disability and developmental difference and children with challenging behaviours. Hi Sara, thanks for joining us today.
SARA: Hi Jacquie, great to be here.
JACQUIE: Thanks. I was wondering, why are you interested particular in working to improve the mental health of children with disability?
SARA: Well I guess through my activities, initially in research but also in practice, in my working practice, and particularly with children in child protection system, I'm very aware there's high levels of disability and neurodiversity, but also alongside with that, I'm aware of some of the challenges, we go along with conducting therapy and trying to support young people with disability and neurodiversity, so I was really interested to open up a conversation about that today and to be a part of the conversation. And also to hear from our lived experience partner as well. I'm looking forward to that.
JACQUIE: I know - yes, I'm really excited for that too, thanks Sarah. So yes, we're also joined today by Chris who is a disability support worker and a mum to two beautiful boys, the youngest of whom, Sam, lives with severe physical disability and vision impairment. Hi Chris, thank you for joining us today.
CHRIS: Hi, yeah, it's great to be involved in this webinar today and giving information on my lived experience.
JACQUIE: Thanks, yeah, we're so grateful to have you. What motivates you to work with Emerging Minds as a child and family partner?
CHRIS: I think it's quite important because I want to spread the word of how professionals and just regular people with the community can adapt communities and get information on how to make people with disabilities live better within their environments.
JACQUIE: Yeah of course. It's really important to have your voice as part of the conversation so yeah we're very very thankful to have you here today. Great, now I'd like to hand over to Sara to give us an overview of the prevalence of disability in children in Australia and the importance of the social model of disability. Thanks, Sara.
SARA: Thanks Jacquie, so I just wanted to today take the opportunity to outline the social model of disability, and really it's just a very simple framework for understanding a child's experience of disability, and it's based on the three factors identified by the World Health Organisation that really capture - that are the central features of a person's experience of this who is living with disability, and I think that - well we think at Emerging Minds that the social model is a really good way to - offers us a way to help understand a child's experience of disability, and also that each child's experience of disability is unique and why it might be unique, but also to understand why children living with a disability might be at increased risk for developing mental health concerns over time, but also importantly gives us an opportunity or a way to frame or to approach the support that we offer to children who are living with a disability who might have a mental health concern. So I just wanted to name a few things upfront, in terms of acknowledgements, and that is to say we will be talking about mental health, concerns today and supports but I really just want to acknowledge up front that children who are living with a disability like all children do experience good mental health as well, and that all children experience mental health along a continuum and their experience of social and emotional wellbeing is a result of you know internal factors like their own temperament, their personality, their lived experience and also their social and relational world. So that's true for all children including the children we'll be talking about today. Also I just want to acknowledge that as a professional or as professionals, we are all constrained and siloed a little in the way that we work, we just want to acknowledge that because we are all kind of working from a medical model, some of us more so than others, but I just want to acknowledge that. And we all (audio malfunction) professional role, by the service parameters that we work under, by the funding parameters that we work under and so on. So I just want to acknowledge that, but also offer an opportunity today to step outside of that and explore what the social model might offer in terms of developing supports for young people. And particularly to offer the experience to hear from our lived experience partner, which I think is going to be incredibly helpful. Just to start us off with some headline stats, I just want to bring to your attention, some Australian research that was done by AIFS around the prevalence of disability in Australian children which highlighted that you know between roughly four and roughly 10 percent of Australian children between the ages of 0 and 14 might be living with a disability. If we accept the Australian Bureau of Statistics tells us there's roughly 4.7 million children who are between the ages of 0 and 14, so depending on what stats you use that tells us that there's probably around 350,000 children in Australia currently living with a disability, so it's a significant group of children for us to be aware of. And just internationally, just to confirm that international studies in UK and US have also confirmed high levels of disability amongst children. Possibly even higher than what we've recorded in Australia so far, so - and I think importantly for us to keep in mind is that children who are living with a disability are at the increased risk for developing mental health concerns over time. So just from a research perspective, most of the research has been done with children with an intellectual disability where they found that between 38 and 49 percent of these young people would have an identified mental health concern, and similarly for children living with a physical disability - and cerebral palsy in particular where there's been the most research around a third of those young people would be living with an identified mental health concern. So taken as a whole, the data seems to be telling us that between a third and a half of children who have a - living with a disability might also be living with a mental health concern. So that number is a lot higher than the 14 percent that we might expect for children who are living in the general community. So these high rates of mental health, possible mental health concerns are not inevitable though, which is the good news. So a social model offers us a way of understanding why children may be an increased risk of developing mental health concerns, but also importantly gives us a framework or a guide around what kind of things we might need to consider when we're supporting the mental health of children living with their disability. And I just want to run through those very quickly in the time that I have. So firstly, as practitioners I think would be good to - I think it would be good to unpack a little bit the nature of the disability that the child you're working with has. So, many disabilities come with a label, but also that they come with - children often have a range of conditions that they're managing as well. So it might be things like changes to their cognitions so their ability to process information, there might be changes to their sleep or wake routines, they may have respiratory problems, digestive problems, food intolerances. There might be mobility issues, there might be pain, there might be a whole range of things going on for that young person besides just what it initially presents, and so it's really important to try and unpack that if we can. They might have some health conditions that have been there since birth or that have recently developed. They might have conditions that are permanent or temporary and they may have - be struggling with issues that affect multiple developmental domains or multiple body systems or organs in their body. So the importance of that is that these kind of issues can affect children's ability to develop self-regulation and to engage, have the optimal level of arousal so they can engage in learning activities in the school environment. So that's important because we know that self-regulation is a foundation for good mental health in children and in adults. So that's an important thing to unpack if you have the opportunity to. Second of all, how does the disability the child presents with impact on their opportunity to participate in learning, activities, the kind of activities that lead to self-efficacy, sense of mastery, sense of confidence, and also just developmentally appropriate opportunities to take risks or to learn, to get a sense of independence. How does a disability impact on that because that kind of sense of mastery and confidence is really central to children's mental health as well and their resilience. And then finally, how does the disability impact on their opportunity to participate fully in age-appropriate relationships and connections with others, and to participate fully in social community activities. And this is really important to explore because we know that that kind of connection with others and relationships, sibling relationships, friendships, connection to communities is a really important part of how children develop their identity and their sense of belonging. So the social model really just offers us a way to understand each child's experience of disability and why it might be unique, but also to kind of start to understand how these kind of three factors identified by the World Health Organisation might come together to create the children's mental health experience and also what we might do, what areas we might look at to try and support that child. And so I think that's enough from me but I just want to encourage you to hold that model in mind while we go through our two case scenarios which we're going to be talking about young Imogen and young Leo.
JACQUIE: Thanks Sara, what a perfect segue for me. Thank you for that really great introduction. It's interesting when you break down the social model it seems really quite obvious but to me it sounds like the medical model that has kind of prevailed up until this point really centres on that first part of the model, the type of disability and is missing those other two areas that really go in to making up what we call the whole child, kind of their entire experience and is also the areas in which you can really hone in on the positive, you know the strengths and hopes and abilities that the kids have for their lives. Anyway, thank you, super really interesting and really great intro. Yeah so, as Sara mentioned, we're going to look at a couple of case studies to help us unpack the social model a bit further. The first is Imogen, an eight-year-old girl living with cerebral palsy. So, Imogen uses a wheelchair and has limited communication abilities. Her sleep quality is affected by a lack of melatonin and sleep apnoea and she has difficulties swallowing. Imogen is a generally calm, good-natured girl. She loves learning and she's a social butterfly however her current school environment doesn't give her the opportunity to do either of these things quite as much as she would like. Second case study is Leo. So Leo is also eight years old and he has recently been diagnosed with level 2 autism spectrum disorder and mild intellectual disability. Leo experiences some sensory issues as a result of his ASD and he's taking medications to regulate his motions and help with his sleep which impacts his wellbeing. He has a special piece of clothing that he needs to wear all the time. He loves to play and he has a keen interest in the natural world. More than anything, Leo just wants to be included. Now thinking about these two case studies in regards to the social model. Sara, can you walk us through the key points to remember when considering the first part of the model, the nature of the condition or the type of disability?
SARA: Yeah sure, and I don't know whether we mentioned that we have this information on the handout as well just in case people have that, they could follow along. So yeah, so basically with Phoebe and Leo, there's a couple of things I think probably we would want to highlight or explore just based on that information because those things are significant for kind of laying the foundation for the children's wellbeing. So for - many children would have difficulties with cognition. So how they think, how they process the world. They could have difficulty with sensory regulation, also the way their senses work or whether they work effectively. They could also have sleep disturbances which we've heard about with these two young people and they could have issues with mobility or swallowing or independent toileting which also affects their participation. So for Phoebe some of the things that stand out around her mobility and her ability to feed. It's about communicating independently, but also her sleep and all these things contribute to her, you know her ability to self-regulate so if you've got a child, which is pretty common in the space of disability, that doesn't sleep or who needs support to sleep and then therefore the caregiver often needs support to get enough sleep as well. But sleep is a foundation for good mental health so it impacts on their ability to self-regulate. And then we have Leo who also has sensory issues related to his autism diagnosis which will affect his ability to regulate and environments will be - it'll be more difficult for him to selfregulate. He also has some cognitive challenges because he has intellectual or suspected intellectual disability but also with autism there's often a very kind of, there can be a certain pattern of thinking if you like, that can make it more difficult for them to be adaptable and to regulate their behaviour as well. So there are a few things going on there for these young people that could - that would be worth addressing as a practitioner or helping them and supporting them in that space. Because that will help them to self-regulate and then they've got the foundation for participating in other activities and engaging in their community.
JACQUIE: Yes sure thank you. Yes, so thanks Sarah you pointed out the couple of things that we do know about Imogen's and Leo's experiences. But based off of that case study we don't know a whole lot. So Chris I was wondering what else you think a practitioner might need to know about each child's experience?
CHRIS: Yeah hi, I think when you're in a wheelchair and you've got the physical disabilities, just going out and about is a real struggle because everywhere you go needs to be modified. There needs to be adequate bathrooms, change tables. Sort of wheelchair access, you can't just go to somewhere that's sandy because you can't get the wheelchair on there. So also if Imogen had like brothers and sisters or family with her, it might be a struggle if the mum took here somewhere and said, well actually we can't go here because it's not accessible. And to Imogen that might be actually causing the mental health issues. Because she feels isolated that she's not able to go somewhere because of her wheelchair. And also, yeah when she goes to school and that, you know, depending on which classes she's in and the disabilities around her peers. She might feel singled out if she's more severe than her peers and can't do the same activities. Or if it's the other way round and she's the only one doing the activities whereas the peers are doing other things that she wants to do kind of thing.
CHRIS: With Leo, you'd have a lot of isolation within the schools. So he might not have friends, so as he gets into teenage years and that, his friends are off doing independent things but he might not be able to do that due to the emotional regulations. And him not being able to control his behaviours. So he might be singled out there. They might separate him at school because he can't be around certain kids because they might press his buttons and cause the behaviour that he's not able to control. When he's out in the community with family and that, it might be in noisy environments, he might not be able to control his behaviour or regulate his emotions because he's just so overwhelmed by what's going on with all these, you know weird noises and new sounds and everything. And it's the same, you know, if he was to go to a doctor’s appointment or something he might walk in and be stressing about needles, even though he's not getting a needle that day. And that might actually cause behaviours because no one's actually explained to him, oh we're just having a chat or something, he might be expecting something totally different. So yeah, I think that's a big part of it that plays a role.
JACQUIE: Yeah definitely, thank you Chris it sounds like for both Imogen and Leo for various reasons it could be an experience that's quite isolating. You know, whether it's because of physical access restrictions or forced separation in school from classmates, something like that. Yeah, so let's return to the case study considering the second aspect of the model. The impact on activity. So Imogen attends a special school, away from her older brother and sister. She misses them a lot while she's away. And she wishes that all three of them went to the same school. Due to her disability, Imogen has up to four medical and therapy appointments per week. On those days she doesn't go to school because her transport to and from the appointments isn't covered. Therefore, she misses out on a lot of time in the classroom. When she is in class Imogen learns in an adaptive environment with a special school curriculum. However due to limited SSO support, she spends a lot of time waiting around and really only gets a couple of hours of learning time each day. Imogen loves to learn, as we mentioned before. So she's currently quite frustrated that her learning abilities aren't being encouraged to their full potential. Leo on the other hand attends a mainstream school with SSO support for academic learning. He has regular appointments, for example with the in-school psychologist. So like Imogen he's often out of the classroom. Leo is excluded from school camps and out of school hours care because the school doesn't have adequate funding to provide the necessary supports. He's on a play program so he isn't allowed to be in the playground unsupervised. Instead, Leo usually spends lunchtime in the library. He struggles to make friends, just like you mentioned Chris, Leo's peers know exactly what to do to push his buttons to make him explode and get him in trouble. While the bully's often don't face any consequences themselves. So Sara, if we're looking at the impact on activity in these cases of Imogen and Leo. What would you say the important points to remember are?
SARA: Just - I think it's important to provide - so as adults we're responsible for providing the opportunities for children to provide learning experiences to fully participate in learning activities so that they can develop that sense of competence and self-esteem that goes along with that as a foundation of social and emotional wellbeing. I think as much as we've heard from those examples, much more difficult sometimes for children to fully participate in their learning environment. Just to take that example, because of things that were mentioned there, like structural or systemic issues around their access to support or needing to leave the classroom to get the support that they need. But also because of the way that we - the fact that the teachers often not suited to some young people who are living with a disability as well. And ultimately you know, the classroom environment is one that where you have to meet - well, there's a pressure to meet the needs of most children. So even in a special class like you mentioned he's in, there will be a variety of needs. And so it's quite a challenge for teachers to be able to address the learning and master a set of goals for all the young people with a disability. But I guess the message is, it's our responsibility as adults to create that environment where they can have learning opportunities and where we can push them to extend themselves and to learn and have that same sense of mastery that other kids you know strive for. And yeah so - and if we don't provide that then we could place children at more risk of feeling a bit hopeless and not having that sense of resilience and optimism.
JACQUIE: Yeah, thanks Sara that's a really excellent point and actually. The question I had for Chris was, what do you think the adults in Imogen and Leo's lives could do to help build their sense of achievement and control?
CHRIS: I think about, basically asking them what they want. 'Cause even though Imogen is maybe non-verbal, she'll still have some form of communication. So it's about learning what kind of communication she has, how she can answer questions in her own way, whether it be body language or a smile or something. And simply give her choice and control to give her a sense of belonging. And I think it's important that you look at every activity that a child may attend, and think how can I simply modify the environment so every child is included with all different types of disabilities. So it might be for Imogen that if she goes to play-based activity, just having a higher table where her wheelchair would fit under, so she can access the equipment and all that, would make a world of difference to her. And then when Leo's involved, you know, again it's asking him what he would like to do, giving him options. Choice and control, making him feel like he's in control but really, you know, you're only giving him a few options. Yeah, give him the sense of belonging. If he goes for activities but he's getting overwhelmed by it, maybe taking him away, doing something else quiet and then coming back to that activity, so he's still feeling that he's achieved the activity in the end. And, yeah just small modifications to the environment works wonders.
JACQUIE: Yeah sure, so it sounds like they don't need to be massive structural overhauls. That example that you gave of Imogen's wheelchair and just having the table height adjusted to accommodate her sounds quite you know, straightforward and easy enough to do. We saw a lot of barriers in those two stories, particularly around support staff. What do you think can be done to overcome such barriers besides of course employing more support staff, SSOs?
CHRIS: Well I think it's about structuring the days better. Having knowledge behind each disability, having you know, sort of the likes and dislikes, the triggers and things that are going to work a bit easier. I think Imogen's really struggling because in a disability setting, whether it be, you know residential care or aged care or anywhere like that. You've always got the hoisting which can take considerably a big portion of your day. If you have five kids in Imogen's class, that's like 10 minutes each child to be hoisted. And then 10 minutes to be hoisted back into their chairs and then there's the changing in the bathroom, going to the toilet, that's another 10minutes. So each child's probably taking up you know, nearly an hour a day just from transfers and toileting and feeding. So it's a big portion of the day each child, and if there's not adequate staff, you really - you're not going to get much done in the day. And I think with Leo, you've got more - he has to be constantly watched and you know, his behaviour needs to be reinforced to be directed in the right way to stop the triggers that are going to escalate and cause the behaviours. So that he feels like he's had a good day where no one's told him off and you know, he's making friends because he's choosing the right decisions and being influenced by the right peers.
JACQUIE: Yeah sure, that makes sense.
SARA: And so those - so Chris it's important, would you say it's important for all the adults that are surrounding these young people to understand what their triggers are? What causes frustration for them and how we can help them to learn that skill of self-regulation? Even thought that might have to be adult led to start with?
CHRIS: Yeah, it's definitely very important to know the disability and know the triggers, the likes, the dislikes, and everything about them and how they communicate and how to interact. So that, yeah, their wellbeing is all covered.
SARA: Because for all children to learn they do need to be at that optimal level of you know, like they can't - and then it doesn't matter if you've got the best teacher in the world because if the child's out of the class, like Imogen, like toileting or being hoisted or whatever. Or they're sort of tuned out because they're regulation is off, then they can't really participate fully,
CHRIS: Yeah, I think that's correct. And with Leo, he would struggle in a mainstream classroom if there's say 30 or 40 kids in the class, they're all yelling and screaming and they're having a great time. But for Leo that might be overwhelming which might actually trigger the behaviours. So for staffing to recognise the triggers before they happen, remove him from that situation to cool down and have some quiet time. And then coming back without actually doing anything wrong. So it's allowing him to self-regulate at his own level.
JACQUIE: Yeah - - -
SARA: And as much as we want to understand the individual triggers. Have you had any experience where like there's - in psychology speak we would call 'universal strategies.' So the whole classroom is involved in regulation or, you know, so it's not stigmatising in that way, that a young person is not singled out. So it might be, you know, the incredible 5-Point Scale or whatever, lots of movement, breaks or whatever it is that the classroom needs to do as a whole - - -
CHRIS: Yeah I think - - -
SARA: - - - have you - - -
CHRIS: - - - I think in an ideal world, that would be great. But I think nowadays with classes just getting bigger and bigger and bigger in mainstream. It's harder for the teacher to create programs for every single child. And even though with Leo they have the diagnosis, there may be other kids within the classroom that haven't been diagnosed yet, that also have got behavioural problems. So in a class you could have five or six kids that are showing behavioural problems but only Leo has the diagnosis. So only Leo has the support, whereas the other kids have no support. So it's very tricky for a teacher.
SARA: Yeah absolutely.
JACQUIE: Yeah, it's very complicated. Thank you guys that was a great discussion, it feels like we're flowing really nicely into the Q and A discussion. But before we do I just wanted to look at final part of the social model and the two case studies. So Imogen faces a lot of accessibility barriers when it comes to participating in day-to-day activities which we've kind of touched on. Her parents need to go to a venue or an activity first and assess its accessibility. For example, can her wheelchair move around okay, is there any risk of any toileting difficulties before they then take Imogen the second time. Family gatherings in particular can be hard. Imogen's extended family often forget about her when they're planning where to go. For example, they might choose a restaurant without wheelchair access. Imogen would like to join the Girl Guides so she can make some new friends and do the same kinds of activities as other kids her age. She's also heard about disabled surfing and would love to try that this summer. Leo doesn't face the same kind of physical accessibility barriers as Imogen. But his sensory sensitivities can still sometimes make certain activities difficult or impossible. His older brother Max joined the Scouts last year and after seeing how many friends he's made, Leo desperately wants to join in too. He tried the Riding for Disabled program once last year as well and really enjoyed it. So, he'd love to try that again too. So, Sara thinking about the lens of participation. What would be important for a practitioner to consider when looking at Imogen and Leo's cases and how their disability might be impacting their participation?
SARA: I think just really to understand that children living with a disability there can be more barriers to connection. And to participate in community events, to be part of social community, you know to form great relationships with their friends. As any eight-year-old would be wanting to do. You know, it's like forming friendships with kids with the same interests that they have. So it's just - it can be more difficult. But we know that it's important because that's a really important part of kids identity especially at this age. That they are starting to sort of work out what they're good at, what they're not so good at, where they belong, who are their friends, what are their interests. That sort of stuff. So that's a really important stage of kids development. So it's important for us as adults to support children and often the family to be able to follow children's interests and connect them to communities that are important to them.
JACQUIE: Yeah, definitely thank you Sara. And Chris, considering both Imogen's and Leo's stories, how can professionals foster and nurture the relationships and connections that Sara was just talking about that are so important to children's wellbeing?
CHRIS: I think it's, you know important when you go to mainstream social activities where they're joining in. So if you've got Imogen and Leo both wanting to join Scouts, Girl Guides. And I think to be able to participate, they need to - you need to upskill the leaders to say, hey these kids want to participate. These are their disabilities, this is how we can adapt the environment. And I think it's, you know, onboard you have parents or support workers coming on board and saying okay, what kind of activity are we going to do today, and before the activity happens, you say okay, well, Imogen might need this and this modified so she can do the exact same activity as all the other kids, so then she's fully participating within the activity, and not being excluded at all. And same with Leo, you know, it's just about again, making sure that he's not getting overwhelmed, the triggers aren't going to kick in. If he has difficulty socialising, it might be just guiding him on questions that he could ask his peer, so - and maybe look them in the eyes, and just kind of guiding them on what their programs are within the speech and OTs that are set up to him, so that he's learning in a real environment, and without actually realising that he's learning, and being doing an OT or speech session. And yeah, just getting him amongst his peers is a real key. But I think it's about them learning the disability, learning how they can modify, seeking help if they don't understand something before they can actually participate.
JACQUIE: Sure. Awesome. Thank you so much, guys, that was a really fascinating discussion and insight into the practicalities of the social model. We've got a bunch of great questions coming through already, so let's just dive right in. One viewer has asked how to distinguish between medication effects versus mental health concerns.
CHRIS: I guess when you're looking at disability, obviously you might ask the parents or the carer with them, and really question, you know, are they behaving like this because they're doing it on purpose, or is it part of their disability. And I think you'll find most parents or support workers would be open minded to say well, actually, they're behaving like this because they don't understand how to do this, or they can't work out that you're smiling and you're happy, so they think you're angry. So it's about doing that kind of thing, and I think with Imogen, obviously, you know, she might be taking medication that may make her a lot sleepier during the day, so she might be, you know, some days napping in her wheelchair, when she should be actively playing, and I guess yeah, just kind of working out, well, obviously it's not because she's been partying all night, it's just medication. So yeah - yeah.
SARA: And psychologists would kind of look at a bit of a timeline around, you know, when kids started medication, and were some of these issues there before the start of medication, is there any difference before or after. And you can do that kind of thing. Psychologists can do that formally, but you can also do that informally, just having really - it's all about knowing - like you're saying, knowing the child and knowing what's going on for them can make a big difference. And that's where the support workers, disability support workers and parents are really important, in having that rich sort of sense of history of the child as well, which specialists just can't have. So yeah, certainly there are medication effects to be aware of. There are also lots of benefits of medication as well. So just having that sense of, you know, what are longstanding issues and what are some things that might have come about since the onset of medication, or a trial of medication. And often it does need to be tweaked over a period of time as well.
JACQUIE: Yeah, I guess it makes a great case for the continuation of care, the more holistic model of professionals being able to work together, so that as you say, the whole story is easily accessible to everyone working with the child. This is a question probably for both of you; how do you include Aboriginal and Torres Strait Islander cultural perspectives for children with additional needs?
CHRIS: Well, I think for like any child, you look at their cultural background and you really see what sort of cultural needs they need to be addressed, and like any child you include them, just like anyone else. You don't isolate them because of their cultural needs; you adapt the environment to meet their cultural needs. Yeah.
SARA: Yeah, I mean I can't speak with any authority about the needs of children with - from Aboriginal, Torres Strait Islander background, except through sort of my observations, and that is that connection is really important for these young - especially important for these young people. And also that some of the disability language is quite off-putting, and because often children aren't seen as having a disability, that's just their way, and I think that's a really lovely way to think of children, just as unique kind of individuals. So I don't have any in just my lived experience of working with kids, just to emphasise how important that sense of belonging is, and how important it is to be expected as the person you are, the unique person you are. And I see that really beautifully done.
JACQUIE: Yeah, thank you, Sara. Thanks, Chris. I wonder if the Healing Foundation might have any resources in particular around working with First Nations children with disability. I'm not quite sure, myself, I haven't looked, but that might be a good place to start. Sort of following on from that, one question one viewer has asked, we've spoken about the role of adults and practitioners, but how can we better support the children's peers, and how can the community help as well?
CHRIS: I think that's a really great question. I guess within the peers, you - so there's an organisation called Young Carers organisation that would actually go into schools and educate classrooms with kids with disabilities and educate everyone on how to act, how to modify the environments, and just information on the disability. I always invite kids to be open-minded and ask whatever they're thinking, because the more questions they ask, the more understanding they are. So it might just be for a kid that's not able to eat, so they would have a peg, and you know, you might have a peer go 'What's that on their tummy?', and it's about saying oh, well, that's how they eat. Just like you and me. We eat through our mouth; they eat through their tummy. So just basically saying well, actually, this is normal in their world, and it's nothing different, and just making it seem so relaxed. And if the - you know if they want to ask weird questions, then I quite willingly invite them to ask whatever they want, and just answer openly, and I think that's the best way to answer it without them feeling like oh, that's just so weird, they don't want to talk about that, or - you know, and they get that stigma to say oh, that's something wrong with that child. You kind of make it sound like, you know, there's nothing wrong with this child, they're just different.
JACQUIE: Yeah, that's wonderful. That would, I would think, help with the child's experience of belonging and not feeling any shame or stigma, as you mentioned, around their disability either. Sara, did you have anything you wanted to add to that question?
SARA: No, I think, you know, that - I think your point, Chris, and it's like normalising - normalising difference I think is a really great value to teach kids if you can, if you have that opportunity. Having said that, some of the social difficulties that kids with autism can experience are really challenging, because they are - they do have - they can have slightly different pattern of, you know, social interaction and friendships, and they can - it can be difficult for other children to accept, sometimes. So yeah, I think schools do some really great stuff around inclusivity, and sort of really the more you understand, the less reactive you're going to be, as a kid, I think. But children do have their limits, you know, especially young children, so - they do like to tell it how it is. But, you know, I think that's something that can be developed over time, and school is a really good place for those kind of conversations to happen.
JACQUIE: Yeah. I'd like to come back to that in a second, because I think it connects nicely with one of the other questions we've received. But just a note, one excellent viewer has commented that the First Peoples Disability Network is a great source of information and support when it comes to working with Aboriginal and Torres Strait Islander children with disability. So thank you for sharing that. Really embodying the sense of collaboration that these events are all about. Going back to what you mentioned, Sara, someone has asked how you would recommend helping children like Leo with problems like bullying.
SARA: Well, generally we if - like I think I've just sort of alluded to, like generally we work with the school around a whole of classroom or a whole of school strategy, to build young people's understanding of each other and tolerance for difference, and there are some programs that schools run. I think what's important in those - there are different programs that can be run - what's important is that there is kind of a common language and a common approach to young people, and for children who have - who might have difficulties with bullying, especially where they don't have language - very well developed language or problem solving skills, we can use social stories or visual cue cards to provide them with options for what they can do in different situations. So sometimes that kind of social problem solving that we all kind of do on the fly, or very - it'll be kind of react and spur of the moment - needs to be actually taught to young people very explicitly, and using a lot of visual props or social stories. So it's a two prong, you know, you need to have an accepting environment, but we also have to build - help support that young person to build those kind of resilience and self-regulation skills that are needed, and sometimes it has to be taught quite explicitly.
JACQUIE: Yeah, sure. Thank you. Chris, did you have anything you wanted to add to that question?
CHRIS: Well, I guess it's down to education within schools and environments, because I mean you can have two different schools with two different approaches. One school might go - look at him and go oh, he's just being naughty, he knows what he's doing, and may not accept any behavioural plans or anything, and not really implement anything. And say he's getting picked on, and then a bully might - you know, he might punch the bully or something, because he's just had enough and doesn't know how to tell that bully to go away, then he's the one that's going to get suspended, where the bully's just going to have a good day at school, because he's the one with the black eye kind of thing. And then you go to another school, and they're really motivated, and they can see oh, yeah, he has autism, you know, these are just triggers, what can we do to help. And they will actually help intervene, promote good behaviour, and really get into his brain and kind of go well, what's going to work, what's not going to work. And, you know, the bullying won't be there as much. So yeah, it's down to educating his environment and the peers within it. Yeah.
SARA: So I mean I think it's - that raises a great point, because it's really about the fit between - it's not, you know, so much about changing the child, but improving the fit between the child and their social world, you know? That's where the problems arise, isn't it?
CHRIS: Yeah, definitely.
JACQUIE: Yeah, definitely. I'm not sure if either of you will know the answer to this or not. Someone has asked whether adults with disability are currently being consulted in how schooling can be made safer for children with disability. Have either of you heard of cases, yeah, where there's that kind of co-design relationship?
CHRIS: Not really. I mean basically - you mean like with the adults within the environment, or the adults with the disabilities?
JACQUIE: I believe the question - and please pop into the chat and correct me if I'm wrong - but adults with lived experience of disability themselves - - -
JACQUIE: - - - being consulted about the school environment and how it can be improved and made safer.
CHRIS: Generally within the school environment they have the education department and they have policies and all that other jargon. They don't necessarily go to people with lived experience, but they might go to the school psychologist or something to say, you know, what can we do better, and then like I said, like carers, as I say, who have got quite a lot of experience, could be they come in for free in education settings in different ways to meet that child's need as well. So I guess upskilling.
JACQUIE: Yeah, sure.
SARA: And I know that person centred approaches are really important in the adult disability space, and so they might believe - and I could be wrong, but they - there is some consultation - there was some consultation in relation to the Royal Commission, where adults with lived experience were able to have some say. But I don't have any more details of that. But it's a great idea.
JACQUIE: Yeah, sure. I'm not sure either, but yeah, it sounds like it would be a really good way to ensure that the policies and the structures that are being put into place are actually going to benefit the children in the way that they're intended to. Thanks. Sara, I've got a question for you here. The percentages of children living with disability that we presented at the start of the webinar were very broad, ranging from less than 4 per cent in Australian zero to four year olds, through to 17 per cent; is that because the criteria to meet the threshold for disability in Australia is more difficult to meet than perhaps in the UK and the US?
SARA: I'm not sure that that is the reason. I think just generally conducting research on a topic that's so broad will result in a range of findings. So some of the challenges around conducting research on prevalence of disability are things like how is the disability defined, and that - and what age range are you looking at, because generally the older the child the more likely they are to have received a diagnosis. So there's some variability due to developmental issues, then there's some variability due to the way disability is defined, and in some studies, you know, indeed, mental health is defined as a disability, so it's very circular, and then also who is - how is mental health measured, when it comes to the prevalence of mental health, and mostly people rely on parent report, but you can get fluctuations depending on if you're looking for a teacher report, or a parent report, or both, just to give a simpler example, because there's quite often a different experience of the child between home and school. So there's a range of reasons why the measurement - the figures vary. And I think it's a field that there could be a little bit more development going on. And hopefully in Australia that's going to be the case, that more people will be looking to research in this area.
JACQUIE: Yeah, it's definitely a complicated area, for sure. Thank you. Chris, this is probably a question for you, and it's a bit of a complicated one. How do we move away from the medical model, when the NDIS currently supports it?
CHRIS: That's very tricky, because obviously a lot of people - and within the media, you hear a lot of negative stories about NDIS, 'cause that's what the media likes to report - but NDIS can be a very positive experience, and it can provide you with a lot of choice and control within your environments. And even though it doesn't support education in any way, there are other systems within the government organisations that support education in different ways within the disability sector, but within like support workers and that, it gives you a lot of choice and control. You get a more funding than the old system, and you're able to choose your own support workers that meet your child and family needs. You know, my son has various different support workers, with different attributes, so one is very fit and loves to jog, so she takes my son for a jog for a few hours, and then I have another one that's more like cuddly and grandma-like, that just, you know, reads him a story on the couch and cuddles him and all that, and yeah, and then you have the blokes that come on board that give that sort of male role model within the disability sector, which I think is really lovely, where you wouldn't actually have got that back on the old system. So yeah.
CHRIS: And can I add something to that? In the sense of, yeah, NDIS is very diagnostic sort of driven in terms of criteria to get in, but there are options and flexibility within the system to build children's relationships and connections under some of the capacity building funding stream, so I think that there is flexibility once you're in the system. So it's - so that's a positive, I think.
CHRIS: Yeah I think when you're in the system, NDIS is based on your goals, where the old system was very much a tick box. And this is how much funding you got for your particular disability. Whereas the NDIS is focussed around the participant and the needs and how they can best meet your goal. And maybe enhance your life so that maybe possibly you don't need NDIS down the track. So they provide a lot of supports for community outings, camps which you wouldn't have necessarily got on the old system. So you might go do Scouts and they'll provide a support worker that will attend Scouts because it's not necessarily a parental responsibility.
JACQUIE: Yeah, yeah that's great thank you both. As you say we're all so used to hearing the negative stories in the media about the NDIS. So it's good to, yeah to have a think about the ways it can be massaged to give the positive kind of more holistic outcomes that we're looking for. This is probably a question for either or both of you.
Are there resources that can be shared around how to meaningfully include children with disability and mental health concerns in decision making? For example, how can professionals do co-design work meaningfully? What activities can they do and how do they know if it's working?
CHRIS: Yeah I think that's quite - there is a great deal of resources out there and I think if you're conducting any kind of activities, whether educational or community based. There's always an organisation out there that you can consult with that would come onboard to help you adapt the environment to include everyone of all disabilities. In the school and education setting there are, say you're in a remote area of Australia, there's specialised disability support staff out there that actually come out to the school. Work with the school, provide resources so that the children can be included. Make sure the appropriate plans are in place, all the reports are done. And just provide that ongoing support throughout the whole entire year.
SARA: And generally like, if you're working with children in a collaborative like way you can use visuals often to support their decision making at an appropriate sort of development level. So you wouldn't be asking them, you know, to use a simple example, you know, to set complex goals for themselves. But within their abilities you can still support their active decision making by often with the support of visual tools. So even simple decision making for young people who are non-verbal about whether they want a drink or whether they want food. So you can scaffold that all the way up to, you know, decisions about their program at school or whatever. So there are ways that you can involve children in decision making. And help build that partnership approach. And I know in the adult space that person-centred planning is a big thing. So I think it's great to aim towards that for children and adolescents as well.
JACQUIE: Yeah, definitely. I know Emerging Minds has a Child and Family Partnerships Toolkit available on our website. It doesn't currently have any resources specifically around co-design work with children with disability. But you may find the podcast and practice papers and other written resources in there helpful as well. So you can find that on emergingminds.com.au under resources and then toolkits. The next question again could probably go to either of you.
What are some of the potential pros and cons of integrating disability schooling with standard schooling?
CHRIS: Yeah I think that's another very important question. When you're a parent with a child with disabilities, you have a lot of options. So one of the options is actually choosing a school where they have a mainstream program in place where they might have a disability unit within the school that the children may attend. And then they get integrated within some of the classroom activities throughout the day. I think like Imogen, she has a lot going on and a lot of care needs and self-help, you know she needs to learn a lot of self-help. Like feeding and all these things take time. And I think when you're integrated within a mainstream school, sometimes they may not have the space within the classroom to be able to nurture those skills that she needs to learn. So that's where the units within the school are really beneficial, because you can go and attend the class but then for lunch and recess, you might go and learn some of those self-help skills. Then go and do some bit of play with the mainstream school. And then go back and forwards and, you know, it's very helpful to have that kind of system in place. Some children don't cope with that because they might have a lot of mental health when they see their peers running around playing ball and they sit back and they know they can't actually do that. And they're very isolated because the activities within the playground don't necessarily meet their needs. So having them in a school environment where all their needs are met, the peers are on the same level, can actually be beneficial in that way. But then you also have the role models as well. So the peers that behave well and will teach the other kids you know, good role models, how to do things, and they learn from seeing and doing. So there's good and bad points about that kind of situation.
JACQUIE: Yeah would it be fair to say that it comes back to exactly what we've been saying about understanding that each child's experience of disability is different. No two children with disability, even if it's the same disability will have the same experience of it. So maybe rather than thinking all children with disability should be able to go to an integrated school. Or all children with disability should go to a special school. Maybe it comes down to, assessing each individual child and their experience and their strengths and needs? Yeah so I think - - -
CHRIS Yeah I think that's a very good point 'cause like, for instance my son, he did actually go to mainstream day care for, well from six months to five years. And then onto mainstream school. In day care he thrived because all the little kids you know, would feed him his bottles and really help him out. And then it was a really cute environment. But then when he went to mainstream school it was the opposite. So the teacher segregated him. So all the kids would be sitting on the floor reading a story and he would be over in the corner with his support worker you know, reading the baby touch and feel books. Because his body didn't work, so they perceived him as a two year old, rather than a five or six year old like his peers. So in that situation he was really excluded. So the mental health would've you know, really been quite bad because he wanted to be sitting on the floor with his peers, reading a story with everyone else. But they often just - - -
JACQUIE: Yeah of course.
CHRIS: They often took him away to do his own program when it wasn't necessary.
JACQUIE: Yeah - - -
CHRIS: So that was more down to the lack of knowledge, the lack of willingness to integrate a child with a disability. So yeah, so the decision was made to basically enrol him in a special school. Which he seems to love but he also misses you know the other kids chatting around him, telling jokes and all that. So there's good and bad points about it definitely.
JACQUIE: Of course yeah, there's no easy black and white answer to that one. I don't think there's any answers like that in the mental health or disability space at all unfortunately.
SARA: No there's often a - and it's often complex because you know, you're talking about social needs and their learning needs and you know, there's quite often a mis/match. Like with your son, like Chris you were talking about that he cognitively, not necessarily delayed but physical very delayed so. And we see similar things with autism as well where children cannot be you know, can be quite smart but still cannot cope in a mainstream classroom. So it's really balancing all their needs for learnings, belonging you know, their cognitive needs, their sensory needs. It's all of those, really understanding all of those things and communicating those things really well to the team around that child.
JACQUIE: Yeah, thank you. We kind of touched on this a bit in the presentation but I think we can expand on it.
How do you know, how to support children with minimal language? How can you understand their needs?
SARA: This is a good one for you Chris.
CHRIS: So - yeah but there's lot of specialists out there that actually do school visits and upskill education providers. And there's also opportunities - and another one to bring back the NDIS. They actually fund community activities where they'll upskill the providers to provide activities as well, part of the participants plan and goals. So there's a lot of resources and funding out PODS where they're Picture Communications, iPads, Switches, whatever form of communication they might need. There's always a specialist out there. And yeah, if you're education based, there's education providers that provide that for free through the education department. And if you're community based, well that comes out of you NDIS package where there's funds in there to upskill anyone that's working with the participant.
SARA: And so the language question is a tricky one in a sense because it can go all the way from children who are completely non-verbal and communicate non-verbally. All the way through to children who can be very high functioning but still have significant language issues, such as young people with autism. So yeah, so it goes all the way from you know, supporting kids to learn those augmented communication things. Like the PODS and the Picture Exchange and other programs all the way up to teaching more high level language skills, like social skills. But just generally the more scaffolding and structure you put around children the better. And the more visual aides you can incorporate that takes some of the burden, the language burden away, the better children will be able to cope. And the more you can explicitly teach the kind of skills that you want them to learn through social stories or other really step by step instruction methods. Is the better they will be able to internalise that sort of stuff. Because quite often we rush to language based interventions. And many young people with a disability just don't have the language skills even if they appear to be talking well, sometimes they don't have the language understanding or the ability to express high, complex things like emotions very well. So yeah, the structure, the scaffolding, visual supports and unpacking those language skills that you want them to learn. Are all really important points.
JACQUIE: Definitely, thank you both. And now our final questions is;
How do you effectively engage with the families of children living with disability?
CHRIS: Yeah well, it's down to just asking questions you know, just, yeah just getting to know the family as a whole and not just saying you know, well you have a child with disability so let's talk about them. Because often it's the family as a whole that you need to learn about to be able to support that child meet their needs.
SARA: Yeah, and family members are often the, you know, they're the source of support for young people, they're often the communication, you know, they're the mediators of a child in their outside world. So, they're really important and to some degree you know, the better we can support families the better we can support children. And I think that's one of the strengths of the NDIS is that you can actually you know, spend more time with parents and care givers around strategies for supporting the child than you can under other funding systems as a practitioner. So that's really good. And just, yeah, like you say Chris be strength based you know. Some of the things that come from having a child with a disability, we tend to focus on the deficits or the loss or the grief. But there's also you know, for the many families, great joys and great resilience and inner qualities that come out of that experience as well. So, it’s really good to connect with them about that as well.
JACKQIE: Yeah definitely, thank you. And it's probably a good time to mention that Emerging Minds is working on a follow-up practice course to our Understanding Child Mental Health and Disability course. Which will be released later this year and which I believe will include some skills around supporting families of children living with disability too. So watch this space. Great thank you guys so much again for your time today for offering your insights and wisdom. It's been lovely chatting with you and hearing from you. And yeah, I hope we get a chance to continue this discussion again sometime.
SARA: Great it's been a pleasure, thank you.
CHRIS: Thank you.
SARA: Thanks Chris.
CHRIS: No worries.
JACQUIE: But before we go, we just want to show you a quick video, introducing our Understanding Child mental Health and Disability course. You can access this course for free, along with a whole bunch of other courses on supporting Infant and Child Mental Health at, learning.emergingminds.com.au.
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1. What is the social model of disability and why is it important in child mental health?
Jacquie Lee (facilitator), Sara McLean and Chris
CFCA Emerging Minds Webinar 12th May 2021
2. What is the social model of disability and why is it important in child mental health?
Jacquie Lee, Sara McLean and Chris
We recognise the Land on which we meet today and pay respect to Aboriginal and Torres Strait Island peoples, their ancestors, the Elders past, present and future from the different First Nations across this country.
We acknowledge the importance of connection to Land, culture, spirituality, ancestry, family and community for the wellbeing of all Aboriginal and Torres Strait Islander children and their families.
4. Learning outcomes
This webinar will:
- identify the ways in which disability may influence children’s mental health and wellbeing (both positive and negative)
- understand the social model of disability as it relates to nurturing children’s mental health, social and emotional wellbeing and development
- describe how the social model of disability can inform practice approaches which better support children with disability and their families
- recognise the importance of seeing the ‘whole child’, not just their disability.
5. Emerging Minds webinar series
- Upcoming webinars:
- Parental separation – June 2021
- Previous webinars in this series (2020/21):
- Families and homelessness: Supporting parents and improving outcomes for children
- Families and gambling: Helping parents and improving outcomes for children
- Send through your questions via the chat box at any time during the webinar.
- Let us know if you don’t want your question published on the online forum following the presentation.
- All our webinars are recorded.
- The slides are available in the handout section of Gotowebinar.
- The audio and transcript will be posted on our website and YouTube channel in the coming weeks.
Chris - Child and family partner
Sara McLean - Workforce Development Team, Emerging Minds
Jacquie Lee (Facilitator) - Communications Officer, Emerging Minds
8. Why does it matter?
- Children with disability can and do experience positive mental health too.
- Children live in a social and relational world.
- Your invitation:
- Social vs medical model.
- Step outside discipline, funding and service parameters.
- Hear about lived experience.
3.7% of Australian children aged 0-4 years live with disability.
9.6% of Australian children aged 5-14 years old have disability.
4% of these children have severe or profound disability.
10. Prevalence (cont.)
11-17% of seven-year-olds in the UK live with disability.
18% of all US children have one or more form of disability.
11. Social model of disability
Alt text: Venn diagram showing the three interrelated aspects that contribute to a child’s experience of disability: type of disability; impact on daily activities; and impact on participation
12. Two different experiences…
Lives with cerebral palsy
13. Two different experiences cont…
Lives with intellectual disability
14. Type of disability
Impact on activity
Impact on participation
15. Q & A discussion
16. Extra question time
Following this webinar, the presenters will respond to remaining questions. These responses will be added to the recording of the broadcast and posted on CFCA in the following week. Subscribe to CFCA news to be notified when they are available.
Dr Sara McLean is a registered psychologist and the Knowledge Translation Advisor for Emerging Minds. She also runs a private practice and consultancy in the areas of child protection, disability, developmental difference and children with challenging behaviours. Sara has published widely on the support needs of children with developmental difference arising from disability, prenatal and early life adversity, and trauma. She is the author of the Fostering Difference website and materials, and the book Parenting Traumatised Children with Developmental Difference. Sara was awarded the ACU Linacre Fellowship at Oxford University in recognition of her critical analysis of the out-of-home care system and her work supporting children in care.
Chris is a 40-year-old mother of two beautiful boys aged nine-and-a-half and 11. She grew up in New Zealand, where she studied a Bachelor of Social Science/Human Services before moving to London. There, she spent five years working in high support pediatric and volunteering for disability camps, working with a whole range of therapies. Looking for a quieter lifestyle, Chris moved to Christmas Island where she fell pregnant with her two sons. While the island was an amazing place for the boys to grow up, her younger son’s complex medical needs meant numerous flights to Perth and month-long stays for medical treatment. This was very draining on the family and eventually led them to relocate to the mainland. After enjoying two years travelling around Australia, the family settled in Adelaide, where they have access to the best therapists and an amazing team of support workers. Her son attends a special school which he seems to really love, lives in a house that is fully modified with hoists and equipment to suit his needs and can take part in a variety of activities. While Chris admits the family miss life ‘back home’, she says moving to Adelaide was the best decision they could have made.