Public hearing 24 - The experience of children and young people with disability in different education settings, Canberra - Day 3
Video transcript
CHAIR: Good morning, everybody. Welcome to this, which is the third day of our Public hearing 24 of the experiences of children and young people with disability in different education settings. We will commence with the Acknowledgment of Country, and I invite Commissioner Mason to make the Acknowledgment of Country.
COMMISSIONER MASON: Thank you. I acknowledge the First Nations people on the land on which this Royal Commission is sitting. We pay respects to the Ngunnawal and Ngambri peoples. Their land is where the city of Canberra is now located. We also pay respects to the Wurundjeri people of the Kulin Nation, where the city of Melbourne is now located. We pay deep respects to all elders past, present and future and especially elders, parents, young people and children with disability. Thank you, Chair.
CHAIR: Thank you very much. Yes, Ms Eastman.
MS EASTMAN: Good morning, Commissioners, and good morning everybody following the proceedings of the Royal Commission. I'm very pleased this morning to say that the first witness you will hear from today is Bas, and Bas is here in the hearing room. Bas goes to school, so he's having a bit of time off from school this morning, but he has to go back to school later this morning. And Bas recently did a speech at his school and, Commissioners, he would like to share his speech. But I'm going to hand over to Bas now to say hello.
BAS: Hi.
MS EASTMAN: And then, Bas, you tell me when you're ready to start and also when we can say you're ready to start with the slides.
BAS: One minute.
MS EASTMAN: One minute. Okay.
CHAIR: Well, in the meantime, Bas, welcome to the Royal Commission. Thank you very much for coming here today. I'm sorry we can't get you a whole day off from school, but we have done our best. So please stay here as long as you can. Enjoy the time away from school.
MS EASTMAN: Okay. Thank you, Chair. So, Bas, you are ready to go?
BAS: Hello, Royal Commission, my name is Bas [REDACTED]. Today I am going to talk about cerebral palsy and convince you people with CP are just the same as everyone else, and I will also show you how it affects people. Cerebral Palsy is a physical disability that affects movement and posture. Some people have a greater disability, but assistive tech helps them do what everyone does. Cerebral Palsy is caused during pregnancy, the birth process or soon after. There is no known cure. According to the Cerebral Palsy
MS EASTMAN: Can we stop I think, Bas, the slides are going too quickly. So we will just go back to the right slide. Is that okay? We will go back one. Thank you. All right.
BAS: According to the Cerebral Palsy Alliance, an Australian child is born with cerebral palsy every 20 hours, and there are 34,000 people living with cerebral palsy in Australia, and 17 million worldwide have CP. "cerebral" means relating to the brain, and "palsy" means muscle weakness or other problems with the muscles. Cerebral palsy affects muscle control, growth, and strength.
Symptoms of CP can vary from person to person. Motor disabilities can be very mild or profound. Some children may need wheelchairs or assistive devices to walk. Other effects may be difficulty talking, poor balance and difficulty swallowing. I was born with cerebral palsy, and it has affected me a lot. For example, I can't walk without a walker. I can't stand without the wheelchair, and I need a device called a talker to talk.
I have had 10 surgeries in my life to help my legs and arms move. I have lots of physios and occupational therapists. They help me move my legs and arms through exercises and they help me get stronger. However, people like me with cerebral palsy like to have fun like everyone else.
Dylan Alcott is a radio DJ and athlete who, just like me, has a disability. He was awarded an Australian of the Year for his tennis work and disability awareness work. Also Dylan Alcott DJs at Triple J and he does sport very well, including tennis and others, and just like me, he does swimming very well. Dylan has a 10-year relationship with Triple J and has been a DJ ever since.
Dylan Alcott says being named Australian of the Year is not to win tennis tournaments; it's to change perceptions so people with disability live the lives that they deserve to live. CPA and CP Channel support that people with CP can live an everyday life with some assistance. Cerebral palsy affects these 34,000 people in different ways but they all live full lives like every other Australian.
I have cerebral palsy because I was born very early. Having cerebral palsy means my body moves differently. I might take longer to do things, and I need some supports, but I am just the same as everyone else. I have a wheelchair to help me move, but it also can stand up and control TVs or control Bluetooth devices. I have a talking device: Accent 1000. I call it my talker. It helps me talk. But it also can control TVs and speak French.
People help me with other aspects of my life, like swimming. I use assistive tech to do things like everyone else. I do have a wheelchair, and I feel happy, but other people may be sad because they don't have a wheelchair, even if they have a disability. Although we have differences, we are the same in many more ways. For example, we all love someone, we all have dreams, we all need to be treated fairly. We all have things to like and do and places to go.
I go to school and do my homework like everyone else that doesn't have cerebral palsy. The only difference is I use a bunch of devices to assist me. Otherwise, it's exactly the same. I do YouTube and games once I get home and play YouTube videos until 9 pm when I go to sleep. My conclusion is that cerebral palsy doesn't define who I am. I like the same things as other teens like YouTube, Apple, video games and swimming. I will do the things that I need to do, and I just need very little help to do things. People with cerebral palsy may have differences but mostly are the same as everyone else. All the evidence proves I am a regular kid who can do the same things but just cooler.
If you want to find out more about cerebral palsy, check out the app CP Channel. Here is a short video of how to start a conversation.
(Video plays)
(Video ends)
MS EASTMAN: Bas, thank you for your speech. You've got one more thing
BAS: I have a YouTube channel, Bas Tech Australia. Would you like to subscribe using the QR code? By the way, Bas is spelt B A S.
MS EASTMAN: So, Bas, I'm going to ask that that stay on the screen so everybody following can get the QR code, and if they would like to follow your Bas Tech Australia YouTube channel, they can join. And on that channel, you've got a whole lot of videos of things you have done, including I saw a recent Easter egg hunt. Is that right?
BAS: Yes.
MS EASTMAN: Now, Bas, is there anything you would like to say to the Commissioners while you are here today?
BAS: I'm good. I'm good.
MS EASTMAN: And I think you're going to do karaoke when you go back to school. Can we know what song you're going to sing today?
BAS: Never going to give you up. Never going to let you down. Never going to run around and desert you. Never going to make you cry. Never going to say goodbye. Never going to tell a lie and hurt you.
MS EASTMAN: Commissioners, I think for those following the broadcast, they will know that the Royal Commission has just been Rickrolled. So, Bas, thank you very much.
CHAIR: Bas, I always listen very carefully to what Apple says, so in that case, Hi.
BAS: Hi.
CHAIR: Thank you for giving us your talk. It was wonderful to listen to. And we really look forward to lots of people making a connection with your YouTube channel. Is that what you called it? A channel?
MS EASTMAN: YouTube channel. That's right, Bas, isn't it?
CHAIR: See I'm gradually moving into the 21st century, but you can give me some advice.
MS EASTMAN: Chair, I don't think you should ask me about technology. Ask Bas about the technology.
CHAIR: Okay. Bas, thanks so much and have a good day at school when you get there.
BAS: Disability Royal Commission has a YouTube channel with 500 subs.
MS EASTMAN: And you've got 249 subs at the moment. So you want to beat the Royal Commission's subscriptions. Is that the aim of the day?
BAS: Yes.
MS EASTMAN: Okay. Bas, a very big thank you for coming to the Royal Commission. So Bas is with his mum Julie, and Bas is going to put on some earphones and listen to either the karaoke music or one of his videos, and it gives us an opportunity to talk to Julie.
Thanks, Julie. So, Julie, thank you also for joining us and making sure that Bas could get here on time and supporting Bas today. We very much appreciate it. We are going to have a conversation this morning about some of the reflections that you have, not on Bas' personal circumstances or his educational experiences, but just generally stepping back in terms of looking at some of the more systemic and general issues. So before we do that
CHAIR: Ms Eastman, just before we start yes.
MS EASTMAN: Before we do that, Julie will take an affirmation. And then, Commissioners, we will deal with some formalities.
CHAIR: Do you mind if I call you Julie. Is that your preference?
JULIE: Yes.
CHAIR: Julie, thank you on behalf of the Commissioners for coming today and for giving the evidence that you're expected to give according to the notes that we have. I will ask you, please, to follow the instructions of my associate, and she will administer the affirmation to you. She's hiding behind the pillar.
<JULIE, AFFIRMED>
CHAIR: Thank you, Julie. I will ask Ms Eastman now to ask you some questions.
<EXAMINATION BY MS EASTMAN SC
MS EASTMAN: So your full name is known to the Royal Commission, as is your address?
JULIE: Yes.
MS EASTMAN: That's right, isn't it?
JULIE: Yes.
MS EASTMAN: And in terms of what we will talk about today, there's a number of topics, and you've prepared some notes. So I will be guided by you in terms of how we have the conversation. But one of the first themes that you wanted to speak to is about entry to school and
BAS: I now have 290.
MS EASTMAN: Keep me posted, Bas. Keep us updated, Bas.
So Julie, in terms of looking at the starting point of starting school and decisions that are to be made about where a child should start their school and the nature of schooling, this is a topic that you wanted to talk about. So in terms of parents with children living with disability, to choose a school and to choose a school that provides full and real inclusion what are your reflections on the nature of that choice and the considerations that arise for parents?
JULIE: So when I think about these things now not at the beginning, but now I think about how an everyday average child's parent would think, and an everyday average child's parents doesn't have to think about what type of school that their child is going to, and I think, fundamentally, that is the reason why full inclusion is not realised.
MS EASTMAN: Why is that?
JULIE: So mainstream schools are designed for typically developing children in terms of architecture, the way the curriculum's applied, the way lesson plans are developed in the classroom, the spaces, excursions, camps, social activities. And so if a child with a disability comes into that environment, there are adjustments that are made around the edges, and I think that that means that disability needs will always be secondary and often not met.
Whereas specialist schools, the way that they are described in terms of language and promotion of them, it indicates to me as a parent, to the child going there, to the general community and probably to educators themselves that there's something special happening at the special school, for the special child with the special needs and that there will be some you know, grand benefit of that child going to that school in terms of growth, not just in academic circumstances but in, you know, their personal growth and their skills as well. Whereas I don't think that that actually occurs.
But whilst we have this distinction, it means that there's no very good place that you can send your child, a place that has deficits in terms of disability needs or a specialist school that is an isolated, limited, not real-world environment
MS EASTMAN: Are the choices often sort of cast as that either/or? It's got to be one or the other. Is that your experience?
JULIE: It is. But I think there's LSUs. My feeling on LSUs
MS EASTMAN: LSUs learning support units?
JULIE: Learning support units. My feeling on that is it's just a mini segregated environment within a school. It does have, you know, outreach into the other schools, but it's still a segregated environment. And I think it's often left up to the parent to make the choice, and so if you make a choice that doesn't quite work out, it's your fault, isn't it?
MS EASTMAN: What do parents need in terms of information, right at this early stage so that the question is not about choice but the question is about understanding what the nature of a particular child's needs might be throughout their education journey?
JULIE: Well, my very strong feeling is that there should just be schools. You can have other areas that can build skills so that everybody can go to school together. The research shows that all children learn best and have best outcomes when they are learning together, and that's where we should be headed. In my opinion, that's where we should be headed so that everybody is welcome and all needs are met, all children always at mainstream schools. And then we won't have to say "mainstream" anymore; it will just be school.
MS EASTMAN: The starting point is all children in the first instance should be able to be enrolled at their local school, and that's a starting point, rather than starting from a position of having to make choice. Is that right?
JULIE: Yes. Well, I think that, at the moment, there's no driving factors for mainstream schools to become inclusive. So there's this ability just to keep doing what we're doing, and if somebody happens to come to school that's got a disability, we're going to adjust the edge so that that person can sort of fit into what we're already doing. We should be developing a pattern and a pathway where the school environment is available and ready and accessible in culture and in infrastructure for any kid that turns up. And then you're not making adjustments; you already have made them along the way.
So I think about what could we do today that would make a difference, a significant difference, driving force, to make schools think that this is the way that we need to develop. And that would be to in the very first instance, all children get enrolled in their local school. Enrolment usually takes place in March. That would give the school nine months to get whatever infrastructure and cultural changes that they need going.
And if we do this consistently, well, then eventually the principals of the schools, the school boards and leadership teams would think, "Hey, we better just make sure that everything we do is universally accessible all of the time" and so then we don't have this division. I also think that the assessments of the children need to be at the local school. If somebody is doing an assessment over there and then the school the kid turns up to the school, the school hasn't really had the full experience of the assessment and the requirements that are needed.
MS EASTMAN: I think, looking at things now, is it your view that there is sort of no driving factors for leadership teams to routinely create those inclusive spaces and inclusive cultures?
JULIE: Yes.
MS EASTMAN: And what is it about the absence of those driving factors? What is going to drive leadership teams?
JULIE: Well, I think what I just said, that if there's an expectation that all children are going to be turning up to your school, you have to be prepared for all children all the time. Even with this little fellow at the school, a lot of the school developments in his primary school were not inclusive or accessible. Didn't grow the school into an inclusive school. So if there's not if you don't get it when there is something like this one running around your school, you're probably not going to. So there needs to be high up leadership, policy, mandatory requirements. But like I said, the biggest driving factor would be that these kids are there all the time and so we have to start doing this.
MS EASTMAN: The Commissioners heard from Brit earlier on in the week, and she said, "Look, we are just sick of being the guinea pigs." That, "As a person with disability, we are standing up but we have to be the guinea pig for training and to build inclusion." And this probably sort of takes us into the next topic, which is, at school, should there be a distinction between education, learning support assistance and disability support workers? I think this was a topic that you wanted to talk about in terms of disability needs.
JULIE: Mmm
MS EASTMAN: What would you like to tell the Royal Commissioners about that?
JULIE: Yes. So currently in our jurisdiction, the wording about disability access is that you can go to your local school and when you enrol, "Reasonable adjustments will be made." No definition of "reasonable", no timeframe of what those adjustments will be. And so it really leaves the Education Directorate in a place where they can, you know, dictate what happens. It puts us at odds with each other about what I think inclusion is and what they may think inclusion is, what reasonable adjustments in terms of infrastructure might mean, compared to I think also there was a sense that the adjustments would be made so that Bas could access the curriculum.
Well, school is much broader than just the curriculum, and so it was almost like, "You can come into our environment and we will educate you, but your disability needs won't be a major concern." It's almost like you have to leave that disability at the door to come into the education system. Whereas disability is with a person always, all day, every day. Six hours of a young person's life, like when in primary school, that's the bulk of the waking hours.
If the disability needs and requirements and skill growth isn't met at school, you can't undo that at home anymore. And so there needs to it be an acceptance that at in education institutions that children with disabilities need to have all of their needs met, not just their educational needs, so that they can be a successful pupil in that school on equal terms to their peers. So one of the things that that's good, Bas. One of the things that I found was that the learning support assistance don't actually have to have any training at all. Not even to be an education assistant.
But I think there should be quite a significant difference and delineation between an educational assistant who is helping the teacher prepare whatever they do I don't know what they do, but prepare the arts and crafts and photocopy and whatever education assistants do I'm sorry, I'm not meaning to belittle what they do, but you know what I mean compared to a disability support worker who is going to support somebody that has a host of assistive technology, utilises different tools to access education, is quite a different thing.
And in our general community NDIS and, you know, community has recognised that children need and any person living with a disability needs to have support to be able to have a good and successful life, and that should be exactly the same within the education system. And I think it should be the education system responsibility. Yesterday, we were chatting about how NDIA would play a role. NDIA can help with funding but the drivers of how that's going to happen has to be the Education Department.
MS EASTMAN: Can I just ask you about this what seems to be a distinction between education support and we hear described as teachers aides and disability support workers. There sometimes seems to be a view that just having that person, the EA or the teachers aide, that's the reasonable adjustment. Is that the way we should be looking at the person being the reasonable adjustment?
JULIE: No.
MS EASTMAN: Right. So we have been
JULIE: No.
MS EASTMAN: Because I want to sort of just dig in a little bit about that concept of reasonable adjustments, and the Royal Commission has looked at this a lot. It's a legal term, that even lawyers would say that sometimes it's very difficult to work out what it actually means. But from a practical perspective, coming into school, as you say, support in school is not having a person.
JULIE: No, it's having a skilled person who is able to manipulate all of the assistive technology, assist with the assistive technology, know how to be a communication partner, know how to manually handle people, can be an advocate for the child. So in the classroom, if the child's not part of what's going on, they can step up and say, "Hey, look, Mr so and so, you know, we don't really think that Bas is being part of what's going on. What can we do about that?"
They need to be a person who has good knowledge about disability, disability care and how to promote a person with a disability to gain skills that help them have the best life that they can.
MS EASTMAN: In terms of working out what might be an adjustment just leave the word "reasonable" to one side who needs to be involved in identifying what the adjustment might be and do you have a view about the adjustments being something that may change from in some cases month to month, but year to year as the child and young person make their way through education?
JULIE: Yes. So there needs to be a team of people that look at what the adjustments might be. And I think the key person in that needs to be the parent because the parent knows the child the best. We utilise all of the assistive technology around him and her all the time and so, you know, I think we're best placed to be a great resource for that. But there also needs to be therapy people, the school teams, capital works teams. There needs to be a group of people.
I would say that prior to a child going to school that has mobility needs, the infrastructure has got to be, you know, brought up to standard. So if a child goes to school and they can't actually access the playing field, well, they are automatically segregated. They automatically have a limited life experience. They automatically have reduced ability to have social connections. And so, for us, that's been a big a big issue, that having good access and equal access as peers do is very important.
I have always done a checklist. This is a checklist of things that people need to know how to support Bas. I feel like I bang on about my checklist a lot and I'm the only person that looks at it. But, in reality, that is the thing that needs to happen for him to be able to be supported in school, and often that part of things is included in the ILP. I think that needs to be separate. So these are the disability requirements of this child coming to school and these are the learning requirements, which are quite different, I think. Yeah, it changed.
MS EASTMAN: Do you want it back up?
BAS: Yeah.
MS EASTMAN: Okay. All right. Up it goes.
JULIE: Oh, dear.
MS EASTMAN: That's my fault, Bas. Julie, just on that question of inclusion, and it fits in with attitudes and culture within the school environment, I think you say very strongly that being present is not inclusion. So for the Royal Commission, the part of our Terms of Reference for the Royal Commission is to look at building inclusion, and we are looking at all settings. So how do you think about inclusion and what would you share with the Royal Commission in understanding what inclusion really means at its heart and on a day to day basis? It's up, Bas.
JULIE: Sorry.
BAS: Mum, look at my video.
JULIE: Can I do it at the end?
BAS: Yes.
JULIE: Good. Thank you. So I think that inclusion is providing an environment and a culture that allows full and valuable participation in all aspects of school life and having your disability needs met as well. So it's not just being present and participating; it's participating a valuable and meaningful way. I think that trying to adjust the edges of mainstream education so these kids can fit in is not adequate and will never work for the person with a disability.
I think that the way that it is at the moment, children with disabilities are, you know, constantly disadvantaged, not given opportunities to physically develop to gain social and technical skills. And in our experience and something that really upsets me
MS EASTMAN: That's fine, take your time.
JULIE: is that when this happens, the young person learns that this is the place that they are, separate over here, doing something different. Their peers learn that that's the place that they are in, that's the place that they belong, and that educators continue to think that this is good practice. When it's not.
MS EASTMAN: Inclusion can't be doing things in a way that emphasises difference and identifies that notion of being something "other". Is that right?
JULIE: Yes.
MS EASTMAN: In your experience, is school the place where, for all of us in the community, we see those attitudes develop?
JULIE: I think so. I think that I was watching Brit's submission the other day, last night, and, you know, one of the things that she said was that the problem is not with the children; it's with the adults. And the adults model behaviour. And that would be our experience as well. The problem is never with the children. Children are generally very accepting. They adapt to what's going on. That's how they are wired. And so they take their cues from adults, and I think that it's the adults that need to have the education and the shift.
MS EASTMAN: The next topic we are going to talk about is planning, and I know you've sort of started to touch on that topic. But if we look at the ideas around universal design and thinking about access to premises and places, one of the issues that you wanted to raise was the design, the building and facilities at school and the school premises are not inherently designed or planned for children with disability but work on typically developing children. And that creates that form of segregation or exclusion.
What do you think needs to happen in terms of planning around this? Because I can imagine people go, oh, well the school has been here for a very long time and it costs a lot of money to build a ramp and there might only be one child who will ever need the ramp at this school. So these are sort of some of the things
JULIE: Well, it will be if it stays the way it is at the moment.
MS EASTMAN: But, no doubt, you've heard some of these things.
JULIE: Yes.
MS EASTMAN: So, your perspective, how do you address those your planning issues and what's the thought process or the processes to address these issues?
JULIE: Look, I actually have been to lots of schools to try and find best fit, I suppose, and some schools are, you know, multi levelled, multi-tiered schools, and they are harder to make accessible. But it doesn't mean that you can't. But most schools are designed for throngs of kids, big wide corridors, wide doors to get into classrooms, you know, open plan sort of things, which is perfectly suitable for everybody. Almost everywhere there's a step, you can make a ramp. If you are looking at a you know, more complicated school you could address that over time.
But I do hear that it's expensive, but schools have renovations, new buildings all the time and, in our experience, when those things are done, they're not accessible. So when you're building new stuff, when you're renovating buildings, it should always meet some code and some standard so that the growth of the school over time will be closer and closer to accessibility.
If you're designing a playground, make sure it's accessible. Accessible playgrounds are sometimes a bit more expensive because you use soft fall rather than tanbark, but make it smaller and accessible for everybody rather than not accessible for a group of children. I think that this sort of stuff needs to be mandated, because I have come to believe that people who are not living with somebody in a wheelchair really don't get access.
It's not their fault; it's just the way that it is. So if you're developing a new thing, make sure that you have people on your planning committee that are in a wheelchair, that have vision impairment, hearing impairment, intellectual impairment, whatever it happens to be, sensory processing issues, so that you are designing it for everybody, always. And if schools do that going forward, well, then, over time, all schools will become accessible. There will be no need for reasonable adjustments.
Some of the standards need to change. Personal care spaces is a standard that needs to change. So most disabled toilets are designed for ambulatory disabled people, but for people who can't stand up and need a wheelchair commode, change table, hoist, two adults, you need a fair bit of space for that to occur. So that standard needs to change. Paths might be better if they were wider. But other than that, it's just about having an intent to create an inclusive environment.
And I also think that creating some awards for when people do it well, I think that that would be a valuable thing. Architectural awards for good design, playgrounds for good design. If tomorrow every education centre in the country said, "We are not going to put anything in our playground except accessible stuff" it would become the norm. It would mean it would be cheaper
MS EASTMAN: Can I ask you this you may or may not be aware of it in the scheme dealing with disability discrimination, there are a number of standards. There's a standard deals with education, but there is also a standard dealing with access to premises. In the course of your engagement in the education space, not in your other professional lives, have you been told about the standards or has there been any explanation as to how those standards are relevant to the school environment?
JULIE: I was not told about the standards but I read them so that I could advocate for what was required.
MS EASTMAN: Would it assist parents to be made aware that there is something that's called Disability Standards that deal with questions around access to premises?
JULIE: I think it would help if the educators were aware.
MS EASTMAN: Right.
JULIE: And so the parents don't have to go and drive it.
MS EASTMAN: That may be a question that we will ask the governments appearing tomorrow about the use of education standards with the premises standards as well. Are having those standards helpful for you in terms of advocating for changes in public places and education spaces?
JULIE: I think they are. They need to be applied, is the issue.
MS EASTMAN: Right. I want to move to assisted technology and learning. And one of the themes for this hearing has been about looking and understanding the nature of human rights and the importance of children and young people being able to have a voice in both understanding and then being able to advocate for their own rights and the importance of communication as a foundation to education and to be able to make decisions for themselves and to have choice and control in their life. So this is a theme we wanted to explore at this hearing. We've seen Bas in action in terms of using
BAS: Get as many people to subscribe.
MS EASTMAN: I'm trying, Bas. I have to ask Julie a few questions.
JULIE: We will ask again at the end, okay. Are you right to keep going?
MS EASTMAN: So this is an issue, and this is a matter that you have had to really give some thought to, and for Bas to be able to talk to us today, I think we are interested in how you've worked through what are going to be the right forms of communication for Bas. Not what other people might tell you what you should do or not do or what's good or what's not bad or try this or try that. But how do you work out what is the right thing for Bas? What works for him?
JULIE: I don't know. Trial and error, I suppose. And lots of research and understanding what technology is available and what skills Bas has to be able to access that technology. And it's changed over time. But I think that I'm pretty evidence-based person, so when it became clear that Bas wasn't going to be able to speak, I thought, right, how can he develop communication skills. And so I took myself off to a bunch of conferences and learnt about PODD and, you know, AAC and a whole bunch of stuff.
Tried to source experts in the field that would be able to direct us well and, you know, it took quite it took almost two years to find this device that is very effective for him. And I did it when he was young. Like, I started when he was 2 and so that was like a bit of a resistance in the assistive technology world, because you don't normally do this until kids are school age and I'm thinking, oh, he still needs to communicate. But I think that not all parents have the ability to do that or would understand the, you know, papers and research and all that sort of thing.
So in an education environment, I think it's really important that the educators are aware of resources. Now, not everybody can know everything. Like, I'm an expert on this, but I'm not an expert on somebody else's kid. So, you know, they don't feel educators shouldn't feel like they need to know absolutely everything, but someone does. Someone needs to be responsible for an assistive technology list that says, communication, these are the options of the tools that you have.
You know, if somebody has already got a device, this is how you support that device. If they haven't got a device, how can you assist the parents to get a device or a form of communication. If that doesn't appear to be going to happen, how can the school assist in communication? These are the basic tools. How does that actually look? Where do you go to get it? In a broader sense in terms of literacy development and access to academic parts of the curriculum, there's a whole host of apps and things that can help, and different apps will work differently for different kids.
But having a team of people that keep that resource list up to date, if a school's, like, not sure what to do, they can come and assist quickly. Not after a year. Quickly. That they can help institute both I think that Kim yesterday was talking about modelling. You know, that's something that we've really struggled with is to have people within the education system model how to communicate in a different way. They don't need to know it in detail. They just need to be given tips of how to do it and implement what is being told. If that makes sense.
MS EASTMAN: It does. And I wanted to ask you about universal design for learning.
JULIE: Yes.
MS EASTMAN: And that is ensuring that if you are using a range of different forms of communication and different forms of technology, that's not sitting here on one side and the curriculum and the design of learning is over here. It's about bringing the two together. So what's your view about the importance of UDL as a philosophy in the design of education and the delivery of education?
JULIE: Yes. So universal design for learning means that you're I'm not an expert in it, by the way but means that the base of what you're developing is for everyone. All children, always. So if I'm developing a lesson plan on going to the moon, there will be opportunity to do that in a written way, in a picture based way, in a using a tool. You know, Bas uses a tool called Clicker. In a slide show. There's a range of ways. And for all people, Braille, do they need to be, you know, signed for people who are deaf.
If you develop your plan from the beginning considering everyone, well, then the adjustments that you need are minimal or none. And so I think that if people educators started using the philosophy of universal design for learning, not just in the classroom but in all activities, how is everybody going to be universally included always, well, then we will be growing to a much more inclusive environment. It will take pressure off the teachers that when somebody new comes in, "This is the way I've always done it. How am I going to adjust for this kid over here?"
And I can tell you that, usually, there's a you know the gap is filled by the LSA. Particularly for children with intellectual impairment, I've noticed that the gap is filled by the LSA. It's not really that kid's work anymore.
MS EASTMAN: Can I ask you about behaviour programs in school settings. Because often this question of it's described as managing behaviour, challenging behaviour, behaviours of concern. There's a lot of descriptions used around behaviour. That's an issue which you've also observed and you want to speak about in terms of understanding behaviour, seeing behaviour as an expression of communication, but what needs to happen in a school setting. Bas is trying to get your attention as well.
JULIE: So my observation is that a general behaviour programs in schools are reliant on children having typically developing emotional patterns and skills to be able to develop with, you know, abilities to recognise and modify responses. But the children that exhibit emotional or behavioural expressions of distress that aren't socially acceptable or desirable for the rest of us often have atypical behavioural developments and they don't have skill sets to be able to adjust for themselves.
So the education system keeps pushing out the same thing, but they're not actually addressing the gap that those children have. We've had situations where there's behavioural response plans, and, of course, they're important if, you know, a child is being violent or chucking a chair through the window, whatever it happens to be. People need to know how to respond to that situation acutely. But if that's all you do and you don't actually address why that behaviour occurred and what's happening in the background, all you're going to do is create more behaviour and more distress, and the kid will end up not being at the school anymore.
And so I think that if people had a problem-based approach to why behaviour is occurring oh, Bas a problem-based approach to why the behaviour is occurring, you could use a framework: Is this environmental? Is this a medical problem? Is there something new that's changed in this person? Is the expectation of what's happening too high or too low? Is there friction between a personality clash? Has there been a systemic suppression of this person and it's eventually coming out?
I don't think anybody just expresses behaviour for no reason. So you really have to have a look at what the problem is. If the problem is something that is simple and can be adjusted, just adjust it. If the problem is something that can't be adjusted because this is the way that the world is going to be, well, then it's about building skills of that person to be able to manage whatever that issue is to be able to be independently managing their emotions over time.
MS EASTMAN: I think Ed Croft raised this yesterday. As a teacher, he said he could understand the difficulty a teacher, say, in a class of 28 where if there's one student who is presenting with behaviours that need to be addressed, then how do teachers manage that. In that context of ensuring inclusion, how do you you strike that balance in ensuring that, as you said, if the behaviours need to be addressed, the throwing of chairs or just taking up that example, how you know, how practically can schools do that?
JULIE: Yeah. So Bas did a program called Westmead's Feelings Program. It's designed for children on the spectrum and with intellectual disability, but it actually works for everyone. If you just scrub that out of the title, it will be fine for everyone. There are teacher based resources already in that program. It was a program that started by identifying what emotions were, about how to grade those emotions. Because often kids that don't have that emotional regulation go from here to here very quickly.
And so it gave an essence of you could actually be anywhere in that frame and then developing a toolkit of how to be able to address things when you're feeling distressed. Ask for help, do something else, do something fun. There is six things which now I'm not going to be able to remember off the top of my head. But also along with that it has some basic tools that help with problem-solving. This is the issue. So the issue is not the behaviour.
So, you know, if somebody, I don't know, hits someone, bites someone, whatever it happens to be, that's not the problem. The problem is what caused that behaviour. And then you can look at that problem and say, "Oh, well, the responses are hitting and biting, asking that person to stop, doing something different. Which one do you choose?" And it gives people an option of other things that you can choose. So I think it will be really good if it doesn't have to be this program but I'm sure there is plenty that are similar.
But if that was a program that was put into schools that allow the teachers to have a framework that was consistent across classes, across environments, that they would be able to then have a toolkit themselves that they could go to that would mean that kids would be less and less out of class, there would be less suspensions, there would be less drama for everyone, and it would be useful for the kids as well.
MS EASTMAN: And, Commissioners, as Julie has described, I'm very mindful of the evidence that you heard at Public hearing 6 from Dr Cathy Franklin and also from Professor Leanne Dowse. We will revisit that evidence in thinking about the issues for this hearing. Julie, can I ask you now about when things don't go well and where relationships at school become strained, and sometimes the impediments to parents being able to raise concerns, resolve disputes and not find themselves in a situation where disputes become escalated and that relationships really start to fracture as a result.
I think you've got some topics that you want to speak about in terms of an approach to dealing with raising concerns and not having concerns escalating to disputes. It's a big topic.
JULIE: So I think it's very hard to raise concerns. If the person that you're raising the concerns with can you wait for a little while? Yes. So if the person that you're raising concerns with is the person that sets the culture of the school, the tone of the school, the development of the school and so you are basically criticising the way that the principal has developed their school.
And so if you have a principal that's got really good inclusive principles that understand discrimination well, you go to that person and they say, "Oh yeah, let me listen to what you're saying" they acknowledge what you're saying. Depending on the level of what the complaint is, they will go and investigate it. They will come back to you and they will say, "Yes, we've looked at that. These are the actions that we are going to take. I'm going to make sure this is universal across my school" and then they feed back to you and ask you how it's going.
If you are dealing with a principal that doesn't have very good inclusion principles, are prejudiced whether they realise it or not and has developed a tone and culture in the school of, "This is mainly a mainstream school and this is where you chose to come and this is what it's like", well, what you get is resistance. You get a closing of doors, a you know, "We're a close-knit little team" but the parent is over here. It puts the parents in a low, powerless position, and it's very hard to, you know, go against that.
Once you are in that situation, the only place you have to go is to the directorate, who is still the education system. The education system is going to support the educators. There might be some negotiation and some little bits of changes, but there is still still the support comes to the educator. And then the next step up to that is to the Minister, who is also responsible for the education.
So I really think there needs to be a body that is separate from education, so that when you're having these, you can go there and get a quick help and a resolution of the problem, which will help the school and it will help the parent, but, most importantly, it helps the young person involved. They are not disadvantaged. They are not without things for months or years. There is a support system around them quickly.
When there is schools where there are multiple issues raised all the time, that should be a red flag for the education system to say, "We need to intervene in this school" and there needs to be a team that can come in and quickly upskill those people in a cultural and physical sense so that they can understand what inclusion means and that they can move forward in a more inclusive way.
MS EASTMAN: Do parents need some support, if they need to raise concerns or they find themselves in a scenario as you've described of escalating up to a directorate and then up to a Minister?
JULIE: I think you do. And one of the things that I found myself and I know from talking to other parents too is you start to think that you're wrong and you start to think no one is going to believe you. That no one is going to acknowledge what's happening. That there will be no action, that there will be some sort of consequence for your child or for yourself. And so you start to limit what you talk about. You start to only pick things that are really black and white. Like no one could possibly think that this is right, so I'm going to go with this thing. Which means that the little things that set the tone of the school all the time don't get addressed.
MS EASTMAN: Relationships are very important, then, and to have a relationship where you're heard and respected, and the concerns that you've got are acted on quickly and transparently, would that make a difference?
JULIE: Yes. And I'm glad you used that word "transparent". This is the other thing, that if you get out of sorts with the school, the transparency goes. These are really vulnerable people. There needs to be more transparency. If there is an issue that occurs, there should be greater transparency on what's happening. It shouldn't be closed doors and we're going to have secret whispers over here and not tell you what's happening. It needs to be open and clear and obvious to everybody that's going on.
MS EASTMAN: So I did promise that we would go for an hour so Bas can get back to school. So I think I've got a minute to go. Can I ask you about looking to the future and, in a sense, looking forward for Bas and looking forward for the system in which he has still got a number of years to go. What would make a difference for you and for Bas in terms of the rest of the time that he has at school and then thinking about his life beyond school, which looks to me like, well, one of you could be a sort of YouTube star. But no doubt the world is Bas's oyster in terms of the options available to him. But how do you make sure that he has all of those options?
JULIE: Yes. I suppose it's by facilitating as best you can life experience and growth in his interests, just like you would any other child. But I would like to say this that I don't think that education systems really have a good measure of where they're at and individual schools either. And so I think it will be really useful to develop some sort of score card where, you know, either an independent body or, you know, somebody within the Education Department could come along and rate how you're going with inclusive culture, with infrastructure, with growth of your development of your school with universal design, how many adjustments are you making where you could really be building that into your infrastructure.
So I think that having a school score card would be good. It would highlight to Education Departments where they need to place their resources to bring people up to scratch. It would really put a focus on this is something that is needed to be done regularly and consistently. And, you know, educators, like everybody else, like to do well. So I'm sure they would be trying to get to the top of that score card.
MS EASTMAN: Julie, thank you so much for sort of sharing your insights and experiences and also Bas I know he's got his earphones on, but a big thanks to Bas for sharing his, I think, strong advocacy already in his speech to his school. And the Commissioners might have a few questions for you before we let you get Bas back to school. Thanks, Julie.
JULIE: Yes. Thank you.
CHAIR: Yes, if you don't mind, I will ask my colleagues if they have any questions. And we will try and keep that reasonably brief, because we appreciate that Bas has got to get away. I will start with Commissioner Mason. Do you have any questions of Julie?
COMMISSIONER MASON: No questions, but I want to say a big thank you to coming in today, as well as Bas. It's been really, really valuable for me personally but also for the Commission. Thank you.
JULIE: Thank you.
CHAIR: Commissioner Galbally?
COMMISSIONER GALBALLY: Thank you very much, Julie. I have been very struck by not only your evidence today but by the other people during the week, that, you know, it's really tough when you have to advocate over and over and over. And so your solution to that, as I understood it I just want you to clarify that, would be that there is an inclusive school policy across Australia and that this was mandated. Is that is my understanding correct? And that that would relieve some of this really painful ongoing stressful advocacy that you have to do?
JULIE: Yes. Yes. I agree with that. And I think that there should be people with disabilities that are involved in formulating that policy.
COMMISSIONER GALBALLY: And that part of that, as I understand understood it would be a specialist almost like a specialist, inclusive education, sort of like a Zap team that can come out to the school and give them a hand and, you know, come up with strategies and coach the teachers, you know, that would be really supportive of the school. You are talking about turning mainstream schools into inclusive schools. Is that what you are
JULIE: Yes, yes. That's what I'm saying. And, yeah, that's exactly it. That there could be intervention teams that could come in with the view that the school would have to accept that intervention and change.
COMMISSIONER GALBALLY: And that the other thing that I thought was very interesting is the score card, that that would be done would that be done independently and would that how would that have you got anything else to add to that?
JULIE: There is actually a group it's called Social Role Valorisation that already have a score card that could be implemented tomorrow. But it's you know, it's quite a unique group, so it may not be the thing. But, yeah, I think that it would be more effective if it was an independent assessment. I think that when you're assessing yourself, you're probably not as objective.
COMMISSIONER GALBALLY: So that would be like an audit, like a rolling audit.
JULIE: Yes, like an audit, yes.
COMMISSIONER GALBALLY: Thank you. Thanks very much.
CHAIR: Julie, listening to your evidence, you make some extremely powerful points, for example, about accessibility, physical accessibility, the use of assistive technology. And I doubt that anybody could really dispute those ideals and the importance of getting there as quickly as possible. But I sense in your evidence something that has come up repeatedly, and that is the gap between now and what you see there as the goal.
Your evidence suggests, along with a lot of other evidence we've heard, that mainstream schools, generally speaking, are a long, long way away from what might be embodied in the concept of inclusive education. Your vision, as I understand it, is that every child, no matter the nature of the disability, the severity of the disability, whether it's physical or intellectual, should become part of an inclusive education system.
JULIE: Yes.
CHAIR: What I would have you thought about the practical steps that need to be taken to realise that vision and how long would it take?
JULIE: Look, that's very difficult to answer.
CHAIR: It is.
JULIE: I think that I think you just have to do it, is the answer.
CHAIR: Do you?
JULIE: If you keep, like, waiting for something to happen or waiting for some standard to be met, you are never ever going to get there. So when did the Discrimination Act come in? 1992. Three decades we are down the track. Disability Education Standards 2005, I think, so almost two decades down the track. So that's a long time. It's a long time to be waiting for things to change and for standards to change. So I really think that you have to jump in.
There's already good resources in specialist schools. They can be they can come to mainstream schools. You can distribute your staff differently. You can have some weigh stations when things go horribly wrong. You can have, like, a parking station and then get it going again. In my experience this is what I've said before. The amount of resistance that's put up, if that actually got turned into positive action, we wouldn't be talking about this stuff.
Many of the things to do with inclusion around Bas was, you know, really simple. Really simple change the pathway that you're going for your walk a thon so that he can be part of it. Like, that's not rocket science. That's very, very simple. With the behavioural things, it was an external thing that we brought to the school. Well, once that's in schools and that's an established program, you wouldn't need to have kids coming in and out of school.
Mandatory training for teachers about inclusion, developing resources so that they can go straight to it. Implementing universal design tomorrow would, you know, create an environment that was going to be inclusive all the time. So I think that there's a Disability Strategy going on [REDACTED] at the moment which is over 10 years. I would like to see that to be two years.
CHAIR: Thank you very much. Julie and Bas, thank you very much. How many have you got now, Bas? How many?
JULIE: 311.
CHAIR: 311. I will give some thought to whether I, as Chair of the Commission, can give a direction about people joining YouTube.
JULIE: Do you think he should, Bas?
CHAIR: There may be some counsel who suggest I lack the power to do that. They are always like that. Julie and Bas, thank you so much for coming. It's been a pleasure, listening to your evidence and to Bas telling us his story and his aspirations. We thank you very much indeed. And it's been extremely helpful to us. So thank you.
JULIE: Thank you for the opportunity.
<THE WITNESS WITHDREW
MS EASTMAN: Thank you, Commissioners. Could we adjourn now for morning tea and come back at 11 o'clock?
CHAIR: Yes, it's now 20 to 11. We will resume at 11.
<ADJOURNED 10:40 AM
<RESUMED 11:03 AM
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Thank you, Commissioners. And you will see we have in the hearing room I just want to make sure that the camera angle is right. I think we are there. We have Isabella, which is a pseudonym, and Isabella will be giving evidence about the experiences of her son Emerson. I think we first deal with the oath and affirmation.
CHAIR: Isabella, thank you very much for coming to the Royal Commission and giving evidence today. We very much appreciate your assistance. If you would be good enough to follow the instructions of my associate, she will administer the affirmation to you.
<ISABELLA, AFFIRMED>
CHAIR: Thank you, Isabella. I shall now ask Ms Eastman to ask you some questions. I'm sure you're aware, but just to make sure, Commissioner Galbally is joining the hearing from Melbourne. I hope you can see her on the screen.
ISABELLA: No, I see myself.
CHAIR: You see yourself. Yes. Can we get Commissioner Galbally on the screen. There we are. And Commissioner Mason, of course, is with me in the hearing room on my right, and, of course, Ms Eastman is in the hearing room and she will now ask you some questions.
<EXAMINATION BY MS EASTMAN SC
MS EASTMAN: Thank you, Isabella. So your full name and address and occupation are known to the Royal Commission?
ISABELLA: Yes.
MS EASTMAN: And you prepared a statement dated 21 May this year.
ISABELLA: Yes.
MS EASTMAN: You've got a copy with you. Are there any changes that you wish to make to the statement?
ISABELLA: No.
MS EASTMAN: And are the contents of the statement true?
ISABELLA: Yes.
MS EASTMAN: Commissioners, you have a copy of the statement in Hearing Bundle Part A behind tab 3, and there are some accompanying documents which I'm unlikely to need to take Isabella to today. So, Isabella, I want to start with introducing you and the opportunity for you to tell the Royal Commission about yourself and your family, and then we are going to be speaking about Emerson. What would you like to tell the Royal Commission by way of your background?
ISABELLA: My husband and I moved to Australia in 2002. We both had academic training, and he came here for work. We planned to start a family, and we were lucky enough to do that. We have two boys. One is now 18 and the younger one, Emerson, is 16. And we've become Australians and this is home now.
MS EASTMAN: So Emerson is your second son. And Emerson has a diagnosis of autism. And he also has a diagnosis of intellectual disability.
ISABELLA: Yes.
MS EASTMAN: So the matters we will talk about today concern Emerson's experience in starting school, then through primary school. And he's yet to complete school. So he's getting towards the end of his schooling, but he's not quite there yet. What can you tell us about Emerson? I know you've set this out in your statement, but as I have talked to the other witness, that sense of not talking about him, we like to have a sense of who he is, his likes, his dislikes, his personality. What can you tell us about Emerson?
ISABELLA: Emerson is quite an active and actually extroverted young person. He likes meeting people, he likes getting out into the community and trying new things, within limits. And his special interests are in collecting Hot Wheels cars and marbles. But he enjoys other things like arcade games and and his Mario Kart and those sort of things.
MS EASTMAN: And you have said in your statement that Emerson has difficulties with both expressive and receptive language skills. What does this mean in terms of Emerson's day to day life and communication for him?
ISABELLA: Luckily, Emerson is able to express his basic needs and wants and request things. He can also knows his daily routines very well. In fact, he often reminds us of what we should be doing next. And he likes a good deal of routine and predictability. But he doesn't he's very much in the present. He doesn't not interested in abstract concepts or anything that isn't sort of immediately relevant to him, and when he gets emotional, he has a very hard time communicating with words at that point.
MS EASTMAN: When Emerson was about 15 months old, you received the provisional autism diagnosis. And as he was a toddler and before he went to school, you had a lot of early intervention, and he made excellent progress up to that age of 4. So he was beginning to communicate verbally, and he was making that continuous improvement in terms of his verbal and receptive language. You stopped work to assist Emerson in these early years in terms of the early intervention programs and the initiatives that you undertook. Is that right?
ISABELLA: Yes, I wasn't actually I didn't work in a paid capacity after moving to Australia. I was continuing to do some research independently and with my previous employer back in the States. But once he once he was diagnosed, I decided to put all my focus in giving him the best start in life that I could. And I was lucky to be able to do that.
MS EASTMAN: And in terms of information that was available to you at that stage, did you have access to any specific information about autism from the health or allied health professionals? How did you go about finding out about what Emerson might need and the nature of the interventions?
ISABELLA: It was a bit of a crash course. Before he was diagnosed, I had already done a bit of research on how he was developing. So I knew that was in the that was a possibility. The I was given a couple of brochures, I think, put out by the local autism group. They were quite pessimistic, and so it was very worrisome. But then, luckily, I got the help of professionals, especially speech pathologists, who set me on the track to get him going with communication, and that's what we focused on. So I and I just did a lot of independent research on how to go about that.
MS EASTMAN: When it came for Emerson to start formal education, you've told the Royal Commission in your statement that you gave a lot of serious thought and planning in terms of Emerson's education. And these are the topics that you want to talk about today, is the experiences trying to navigate the school system and different schooling options for Emerson, the reasons for the decisions that you made in relation to the options, and then your reflections in relation to Emerson's schooling, and then you've got some suggestions for change.
So those are going to be the areas that we will talk about today. So can I start by this first step, which is the decisions about where Emerson would go to school and what your expectations were in relation to school. So step one was kindergarten. What was involved in deciding what kindergarten your sons should go to and, in particular, for Emerson?
ISABELLA: I was connected to a lot of other parents of children with special needs, and I had heard that mainstream kindergarten could be very supportive of all types of children. So I decided to to start my search there. So I went to some of the local kindergartens and found a big range of responses when I mentioned that I had a son with autism. One kindy director immediately said he should go to a special needs kindy without even asking a question about him, and but I found another one where they said, "We've had children with lots of different developmental issues and we have supported them successfully and he would be very welcome here." So that's the one we chose.
MS EASTMAN: And was it something about the attitude of the kindergarten that attracted you to that option?
ISABELLA: Yeah, it was just very welcoming and confident and also was from I had friends who had had kids there, and, in fact, I should mention that this whole conversation took place very early because I wanted my sons to go to the same kindergarten. They are only two years apart. So I sent my older son to that kindergarten as well because I just liked their attitude and the kindy.
MS EASTMAN: So Emerson, when he started at the kindergarten, went for two sessions a week in term one and then built up to four sessions a week in term two. What was his progress during his time at kindergarten?
ISABELLA: Well, the feedback I got from the kindy director was that it was he was making amazing progress. He was willing to give give a try with all the activities that the other children were doing. He was learning procedures like how to do painting, first putting on a smock and then getting the paints and how to do the different steps of the process. He was pretty happy there. He needed support with sitting down and listening and in the story time.
He was very active at that stage. He didn't sit still much. But they found that as long as he was sitting on a lap, he would be comfortable to listen to the story and quite enjoy it. And they saw him gradually become independent of sitting on a lap. He would just sit next to the the person who was supporting him.
MS EASTMAN: And did observing Emerson's excellent progress in the kindergarten setting, did that have a bearing on then thinking what would be the next step for starting formal primary school?
ISABELLA: Absolutely. His language was really developing quickly. I think when he started kindy, he was only saying maybe two word phrases, and after being there close to a year he was getting up to three, four word phrases and vocabulary increasing. And they saw that he could learn a lot of things. About that time outside of school, he had learned the all the car logos, you know, Toyota, Ford, everything. He could identify them all. And we thought, if he can do that, he could learn to read.
And the kindy director said she thought he had a high potential for academic learning. So we were very pleased by that and wanted to consider a mainstream school option, at least as at least to see how he would do.
MS EASTMAN: And at that time so we are talking about 2010 was there a plan put in place in relation to Emerson's preparation for starting primary school?
ISABELLA: Yes, there was. The kindy director supported that process. So with his I guess they were IEP meetings or education planning meetings. Quite early, she invited someone from the mainstream school that his older brother was already attending to come to those meetings. Outside allied health people were invited, like speech and OT people who had been working with Emerson, and so it was really collaborative. And I was really pleased that the school was engaging in that process.
MS EASTMAN: Did you feel, as a parent, that your views were taken into account and treated seriously in the planning process?
ISABELLA: I think so. At the stage that it was being managed by the kindy and the kindy director, I would say yes. Though in retrospect, I I did see some signs that perhaps the school wasn't as knowledgeable about special needs children as the kindy had been. But that was really after the fact. At the time, they seemed to be welcoming and the attitude well, I was told by the leadership that, you know, your older son is at the school, you are part of our community, of course Emerson is going to be welcome.
MS EASTMAN: In terms of that transition process, it sort of took a couple of terms. It wasn't just one meeting and Emerson was off to start school. But there were meetings a number of meetings, weren't there, over a few months to get
ISABELLA: Absolutely.
MS EASTMAN: the transition plan ready.
ISABELLA: Yeah, I can't remember the exact dates. So they're in the statement. But I think the planning went on for close to a year before he actually was going to be starting. And the plan was to have him do his last term of kindy would be an introduction to school where he would instead of one of the kindy sessions, he would go for a couple of hours to the school with his kindy teacher as a support and be in that classroom the classroom that he was going to be in the following term. So I think that must have been term two and then he would have had a term three, a mid year start after that.
MS EASTMAN: As part of the transition, the department required Emerson to have a verification of his diagnosis and that to be done by the department's psychologist. What was the explanation for needing this verification process to be undertaken for Emerson?
ISABELLA: My understanding was that it would enable the school to get funding or get whatever other supports they needed from the school system to have Emerson at school.
MS EASTMAN: So when the this process of the planning and then the verification of his diagnosis was completed by the psychologist and Emerson's about to start school, were any other allied health professionals involved in the practical day to day attendance for Emerson from kindergarten into that sort of trial period for him going to primary school?
ISABELLA: There were contributions from the allied health people who had been working with Emerson. His OT wrote a report explaining some of the supports that would benefit Emerson. A speech pathologist I believe this was actually the school speech pathologist had done an assessment and sent in her recommendations. I also prepared a document, which I had been given a template for this at a Positive Partnerships seminar that I went to, that had been organised for school staff and parents in general in my area to learn about how to navigate this process.
And so it provided a lot of information about Emerson, how his disability affected him and what supports he would benefit from having. So there was quite a lot of input at some point, there was a representative from Autism SA who came to the school. Those are all the ones that I can remember at this point
MS EASTMAN: So the Commissioners have in their volume of documents, behind tab 30, the document that you prepared to assist the teaching staff and the school know about Emerson. So the Commissioners have that document. So just dealing with this transition phase, you have said in your statement that during the initial term of Emerson's transition, you felt that feedback about his progress was confusing and that the school's communication with you was unsatisfactory.
And was the reason for this that Emerson's kindy teacher also was with Emerson as part of the transition and the kindy teacher was giving you some feedback to say she was very pleased with Emerson's progress, but when you met the class teacher, the description of the progress wasn't quite as enthusiastic. Is that a generous way of describing it? What you can tell us about why you felt confused and what the nature of the school's communications were that caused you to feel that it was unsatisfactory?
ISABELLA: That's yeah. I was lucky to be getting feedback from his kindy teacher and she yeah, her feedback was very positive. But the classroom teacher told me it wasn't at a formal meeting. It was more, I think, probably when I just came to pick him up that she didn't think she had the resources to have Emerson in her class, that she felt he would have been better placed in a different class in the same school.
MS EASTMAN: Can I just ask you, had that teacher who you had that discussion with, had that teacher been involved in the transition planning?
ISABELLA: Yes, she had. Now, I'm trying to remember if she actually came to observe Emerson at kindy. I'm not sure if she did. But I did give her all that information that we talked about previously, and I had met her and she had expressed that she accepted all children as they came, she didn't like labels and a diagnosis, and that she would she was sure that she would be that Emerson would be fine.
MS EASTMAN: And the conversation you had with this teacher was probably about a month or just over a month into Emerson's transitioning into her primary school class.
ISABELLA: That's right. He would only have had four visits to the class of about two hours each with the support of the kindy teacher. And I I knew or I had been told by the kindy teacher that there weren't weren't yet many supports in place other than her being there. There was no visual schedule for the routine in the classroom. He wasn't given any work that was suitable to his abilities. The class that he was in, those students had already been two at least two terms, some of them much longer, at school.
So it was a very I thought advanced reception class and so she it made sense to me when she said that he might have been better off in a class where more of the students were just learning the ropes at school, learning the basic routines.
MS EASTMAN: And she said that he had been placed in that class with older students because they may be role models for Emerson.
ISABELLA: That's right. The principal had felt that having that established those students there for him to copy would be the best way to go.
MS EASTMAN: You also had the involvement of the department's disability coordinators, and there were a number of coordinators who were involved in Emerson's attendance at the kindergarten and then moving into the primary school. One of the disability coordinators also became involved in observing Emerson and giving you information about Emerson's progress in these first four to six weeks at kindergarten. What did you understand the role of the disability coordinator to be and what information did the coordinator provide you? Can you remember that?
ISABELLA: My understanding was that she was to sort of oversee and assist with the transition and to support the school in putting in place supports for Emerson. And I believe she did she did make a good effort with that. It was probably tricky for her because she was, I think, the second or third disability coordinator that had been that Emerson had been assigned to. So that was a bit frustrating. That she didn't really know him and she had to sort of play a bit of catch up.
MS EASTMAN: So there was a meeting around June. So, by this stage, Emerson is about six weeks into that transition process. And that was a meeting with the deputy principal, the disability coordinator and there were other people who you say were present at the meeting, but you've been unable to check your records. At this meeting you expressed that you were disappointed with how the transition was going and you questioned Emerson's class placement. And you expressed your concerns.
How were your concerns received? And I'm not asking you what was in the minds of the deputy principal or the coordinator but what was your perception in terms of how your concerns were received?
ISABELLA: I don't remember exactly what the reaction of the people in the meeting was. I believe that the disability coordinator tried to assist to get those supports in place. Maybe stepped up her assistance a little bit with that, actually physically delivering visual cards to the school, and that did they did appear in the classroom after that. That's about all I remember about the response.
MS EASTMAN: Well, after that meeting, I think, the visual schedule was introduced. So your concerns were responded to in that regard.
ISABELLA: Yes, but not in terms of the class placement. That seemed to be a non negotiable.
MS EASTMAN: So class placement didn't change. And you were also keen to see that Emerson increase the amount of time at school. So that he had more time there. Is that right?
ISABELLA: No, it wasn't so much my at this stage no. At this stage, the I was led to understand that the teacher would wanted to have more time that without his kindy teacher being present so that she could get to know him a bit better. So the kindy teacher was asked to come in a bit later. And then it was, I think, a little bit after that that then I then I got some feedback from the teacher that Emerson had been good, and I think at that point I said, you know, could he possibly stay until lunchtime instead of leaving before recess.
MS EASTMAN: And when that suggestion was made, the teacher agreed but said Emerson's brother, then aged 7, would look after him at recess and she told you she didn't think that they had the support available for Emerson. But you didn't agree with that, you felt that was inadequate and unfair for Emerson's brother to have to, in effect, supervise Emerson at the recess break. Is that right?
ISABELLA: That's right. Yeah, that didn't seem safe at all, having a 7 year old supervising an autistic 5 year old. He's never been a runner, but, nevertheless, he was still learning his way around the school and learning what the boundaries were of where he was supposed to be. And I was confused by, on one hand, his kindy teacher being asked not to come and, the other hand, the teacher not having anyone else to support Emerson.
One day I showed up and there was a new individual who had apparently spent the whole time with Emerson and she had some experience working with kids with autistic kids and had done some actual could actually show me some academic work that she had done with him and that was that was good. I thought, okay, maybe they are getting getting things together.
MS EASTMAN: Well, after these meetings and conversations, there was some changes in Emerson's routine. The classroom had been moved a couple of times due to construction work, and that had agitated and upset him. And there was one occasion when you arrived to pick him up and you had been told about Emerson having a meltdown and how the staff at the school had responded to his meltdown. That caused you some concern. But you also had a conversation with the principal on that day, and the principal said to you that the principal doubted Emerson will be able to learn in a mainstream classroom with minimal one to one support.
And so what happened at that point in time? Had you had engagement with the principal about Emerson and his capacity to learn in a mainstream classroom before this conversation?
ISABELLA: No, I don't well, of course, we had had meetings talking about how to support him to learn in his school, but he had never expressed that sort of doubt that he should should be there in the school in the first place. The changes to Emerson's routine, I thought, were, you know, really clearly related to the meltdown. He there had been a lot of changes in the classes, as you mentioned, and also that day the this new SSO or school support officer is what they're called, the same as an educational assistant, probably.
The new SSO and the disability coordinator had taken Emerson to the big kids playground where he would normally wasn't allowed to go, like the other you know, junior primaries weren't allowed there. But he loved it and, of course, didn't want to leave. And so that's that was when the meltdown occurred. And, yes, so then just in the hallway, the principal suddenly sprung this on me that, "I don't think Emerson will be able to learn in this environment." And I was quite taken aback.
MS EASTMAN: That led to you being asked about Emerson being assessed by a school psychologist in relation to the school placement recommendation. And that that assessment would help the school know what Emerson needed to learn academically. You were assured, even at that point, that it would still be up to you if you wanted Emerson to stay in the mainstream school. Your response to being asked to have Emerson assessed by the school psychologist is a matter that you took up with the school, and, Commissioners, you have at paragraph 28 an extract of the email.
And, Isabella, I might just ask you, if you can, to read that extract of the email that you sent to the principal, deputy principal and the disability coordinator following that conversation that you had with the principal. Have you got that? Paragraph 28 on page 7.
ISABELLA: Yes. I said:
"I think it's very premature to judge Emerson's ability to manage in the classroom without one on one support. I really want to give mainstream school the best possible chance for success, and I hope that we can all work together to give Emerson this opportunity. If having Emerson formally evaluated by an educational psychologist would help the school in this process, I am willing to go along with the school's request to DECS. I am aware that his abilities are very uneven, and he's behind in many areas; however, I doubt that a standardised test will measure his strengths as accurately as can be assessed by people who know his interests and motivations."
So I was sceptical that they would get much information from that test, to be honest, and I normally well, those tests are given in order to determine whether a child can be placed in a special options setting. So, yeah.
MS EASTMAN: You began to feel that the attitude of the school might be the problem?
ISABELLA: Yes. I I was disappointed that when challenges arose and I knew there would be challenges. There was bound to be challenges for him. And this was such an early stage. He hadn't even actually started his formal enrolment. Instead of it being looked at constructively, "How can we support Emerson? How can we address this particular issue?", it was immediately questioned, should he be here at all. And that that attitude concerned me.
MS EASTMAN: And that was also against the background of feeling that you're getting conflicting advice and information about his progress and also what would be best for Emerson. The response to your email was something you received later that same afternoon, and you were told that the psychologist assessment would take place the following Friday at a particular time. So you, the following day, sent an email in reply, in effect saying you expressed some concerns about the psychological testing.
You were also concerned about the timing of the testing and the context in which the testing would be done. You, can I put it this way, tried to suggest that the school think about what might be, if the testing needed to be done, the right environment for that testing so that any testing would yield some reliable results.
ISABELLA: That's right.
MS EASTMAN: You are a scientist. You have a good sense of ensuring that if you are going to do testing, all of the control and the environment has to be suitable. Is that right?
ISABELLA: Well, yes. I just thought that if they took Emerson into a new room in this new school, sat him down with a person he had never met who wanted to make him well, test him that he wasn't going to have a bar of it. He wasn't going to understand what was going on, who this person was, what he was being asked to do. I couldn't see how that could be very helpful for anyone. It was also at a time of the day when he's usually having lunch and a rest. It would be very much of a something out of his routine.
So I suggested could we do it at the kindy and maybe break it over two sessions so it wasn't too much for him and so that he would be in a familiar environment and with a familiar person nearby so he would feel safe.
MS EASTMAN: So that suggestion was met by an email in effect requiring you and your husband to attend the principal's office. So how did that feel, being asked to attend the principal's office? And what happened when you got there?
ISABELLA: Well, I had no trouble going to the principal's office. I think we had had meetings there before. But this was the first meeting that I had been requested to come to alone without any of the disability coordinator, with the deputy principal who I understood was the her role in the school was to assist with special needs education. And I wasn't comfortable. I felt uncomfortable. And I asked my husband to come along, just so that I would have someone with me.
MS EASTMAN: You were told, to your recollection, by the principal about the principal having doubt as to Emerson's ability to achieve academically in a mainstream school. You explained to the principal what your goals were for Emerson in the first few years of school, which were to maximise social development. What did the principal say, to the best of your recollection, in response to you saying that was the goal?
ISABELLA: He just said, "Well, we're not here as babysitters."
MS EASTMAN: And to you that lacked recognition of the importance of social and emotional development to learning?
ISABELLA: It was such a different attitude to early childhood education where the whole child is taken into account and their overall development and social and emotional development goes hand in hand with learning academic learning. And so that was surprising in that very surprisingly dismissive attitude.
MS EASTMAN: You said to the principal that you did not want the test to occur the following day, and his response, to the best of your recollection, you've set out in your statement. He said:
"If the assessment does not happen tomorrow, I will have to tell the department that I am not prepared to have Emerson at this school."
Now, I know that word "prepared" has taken on some shades of meaning in the time that followed the meeting, but at the time the meeting occurred, what was your response to being told that if the assessment doesn't happen tomorrow, the department he will tell the department that he's not prepared to have Emerson at school.
ISABELLA: I felt that I felt that I was being bullied, to be honest. That this that this assessment just had to happen or it would essentially be our mistake in not allowing the school to be prepared and that he that Emerson would be unwelcome there. And I was to be honest, I was fairly incensed because we had had we had done so much preparation. And if an assessment needed to be done, why couldn't this have come up sooner all those meetings that had been done beforehand?
MS EASTMAN: You contacted the disability coordinator after the meeting, and the coordinator encouraged you to look for other schools, and that's what you did following the meeting. Is that right?
ISABELLA: That's right. I just didn't feel that that school was going to give Emerson a chance. And I don't remember exactly what the disability coordinator said, but my impression was that she was pretty frustrated with the school too and thought that probably we could find a better place to give him a chance in mainstream school.
MS EASTMAN: And so you informed the school in July that you were looking at other options for Emerson and, again, one of your emails you've reproduced in the statement at paragraph 32 and you said this:
"Emerson may or may not be able to learn well in a mainstream class, given the levels of support available. But Emerson's father and I strongly believe he deserves the opportunity to try in a school that is enthusiastic about working with him."
ISABELLA: That's right. I wasn't dead set on mainstream school. I was open to other options. But I had been told at the time that the school psychologist did this verification in kindy, and also by the disability coordinator who, at that time, observed Emerson in kindy, that he clearly would be ineligible for a special school because he clearly was behaving not his functioning was not in the bottom 1 per cent for his age.
So we didn't really it wasn't that we were ideologically driven towards mainstream school although we had leanings, I think, towards a more inclusive education but we really felt that we had been told that that wasn't an option. Yeah. So does that answer your question?
MS EASTMAN: Yes, but you had to sort of start that process again, didn't you, in terms of saying where do we go now?
ISABELLA: It was incredibly stressful, because this was the end of term two and he was supposed to start school in term three. It was very awkward to start to suddenly rock up to other public schools and say, "We are looking for a school for our son."
MS EASTMAN: Well, you didn't have the benefit of a nine month or so planning process.
ISABELLA: No, no.
MS EASTMAN: Or transition process. So things then had to move quite quickly. You did decide to have Emerson assessed, and the test that the principal wanted Emerson to do, which was the Wechsler Preschool & Primary Scales of Intelligence test, you said, "Let's get it done."
ISABELLA: WPPSI, yes.
MS EASTMAN: "Let's get it done" so that when you look at other options, you are not going to have that as a barrier.
ISABELLA: Yes.
MS EASTMAN: So that test was done. What then happened in terms of the next step in a new school?
ISABELLA: Well, it's probably important to mention that the test wasn't really done because he just wouldn't do it. He couldn't I can't remember what they said in the report. I believe it's mentioned in one of the documents, but that he was unable to engage with the testing.
MS EASTMAN: Which sort of really confirmed what you had suggested all the way along.
ISABELLA: Yes, yeah.
MS EASTMAN: That this might not be the right test.
ISABELLA: Yeah, I really don't think it is any substitute for someone who actually has observed and worked with him.
MS EASTMAN: So by the end of July, Emerson starts the second primary school. And this was a transition process of gradually from one morning to five mornings at school, and he had an SSO. So an aide supporting him. And how did Emerson fare at this school? What happened to him there?
ISABELLA: Well, we did we went to several schools and talked to principals and other leadership and picked the one that we felt was most would be most accommodating. And I think we did choose well, because he was put into a class with other children who were starting mid year. And because it was a mid year intake, it was small. So the class was only eight or nine children. So that was perfect as a starting point. He only had to be there half the day. He had a one on one person with him. And, from our perspective, it went very well.
He was engaging with the curriculum. They were doing a jolly phonics or finger phonics where there's little signs for letters. I think it's A for ant and B, bat. And because Emerson had learned sign language before he could speak, he just that just clicked with him. So he was learning letter sounds and the little actions that went with them.
MS EASTMAN: But, at this stage, did you also think about some further assessments to keep options open? To see if Emerson would qualify for special education placement? Is that right?
ISABELLA: Yes, we did. We did. We felt that we had been really misled in the early stages by being told, oh, no, he wouldn't be eligible for special education. Now, the reaction that we got at the first primary school was, "Oh, he should be in special education", essentially, so we wanted to know what are our options. We wanted to know all our options. So we did we did agree that they could attempt an assessment. And because he couldn't do the WPPSI, they did a functional assessment based on questionnaire.
MS EASTMAN: So that was the adaptive behaviour assessment system test.
ISABELLA: Mmm.
MS EASTMAN: And that required you to complete a questionnaire. Is that right?
ISABELLA: Right.
MS EASTMAN: So that testing was done. But you also had a report from Emerson's paediatrician, and I think the Commissioners have a copy of the paediatrician's letter. And you have extracted some of the report at paragraph 37.
ISABELLA: Mmm.
MS EASTMAN: But the upshot was that the paediatrician, who supported Emerson's placement at a mainstream school, recommended to trial of Ritalin to see if that would help in terms of him remaining in that mainstream setting, if I can use that language. Is that right?
ISABELLA: That's right, because although Emerson was learning and engaging somewhat in that school and that class, his attention the teacher had pointed out that his attention span was very short, and that made it difficult for him to learn together with the other children. So, yeah, we felt that and together with the paediatrician felt that it might just make the difference for Emerson to be able to stay in a mainstream environment. So it was worth a try.
MS EASTMAN: So you did do the trial using Ritalin, and that helped his attention span, but it also seemed to you, as his parents, to increase his anxiety.
ISABELLA: It did have some negative effects. It made him very quiet, withdrawn and reserved, which, of course, meant that he could sit still and focus a bit better, but it also meant he sometimes would hyper focus and get quite anxious about having to switch making transitions and yeah.
MS EASTMAN: So you get to October so we are still in the first year of school and Emerson was offered a placement in a special options class at another primary school. And you think that that was the result of the psychological testing and an evaluation that had been done of Emerson's needs. Did you take up the option of the placement at another primary school?
ISABELLA: We did in the end. It was not an easy choice. I felt that, with sufficient support, Emerson could have continued learning at that second mainstream school, but we were and it was presented to us as our choice at that stage, but the way the choice was presented, I almost felt like we didn't have a choice.
MS EASTMAN: Why was that?
ISABELLA: That was because at a meeting where the disability coordinator, the principal, were present, we were told that because Emerson would be turning 6 the following year, that was mandatory for full time schooling age, and, therefore, he would be required legally to attend a full day every day. He couldn't do half days anymore. And that the department could only provide I suppose it would have been .5 or the same amount of support that they had been providing for the half day, which would have meant that he would have had half a day without supporting educator.
We knew he would struggle, to say the least. We knew that would be very hard for him. Recess and lunch would be difficult. And we looked at all the pros and cons but and there were a lot of benefits to the special class that was offered. It was small with two educators and eight students. We had already met we could meet the teacher and have some mode of transition and planning around that. But when it came down to it, we really felt like we didn't have a choice, that it was too much of a risk for Emerson to stay in that school without sufficient support.
He would have he would have suffered. He would have been stressed. It might have become unsafe. Now, I know other parents who have been in that situation and have chosen to stay in the mainstream school, and I've seen more support be produced once things came to a crisis and the child was unsafe. But I didn't want to put him through that.
MS EASTMAN: Was that a hard decision to make?
ISABELLA: Yes, yes. It was hard.
MS EASTMAN: So when Emerson is 6, he now starts his third primary school, and this is the special options class. So was this special options class a class within a regular school?
ISABELLA: That's correct.
MS EASTMAN: But not a completely different school?
ISABELLA: Right. It wasn't within the same school. It was in a completely another primary. And it was definitely part of that school.
MS EASTMAN: So to be for him to go to the third primary school, this time, he's in the special options class. It's co located within a regular school. What did this sort of mean for Emerson in terms of fitting in? How did he to the extent you can comment on this, but how did he fit in?
ISABELLA: He definitely fit in quite well, I would say. There was a range of ages and abilities of students in that classroom, but they did a fairly good job of tailoring the education to fit each child. There were some challenges around, again, the recess and lunch where the kids were together in the playground with the mainstream kids but overall overall, it worked fairly well.
CHAIR: At this stage can I just ask what support did Emerson have?
ISABELLA: He had the teacher and a SSO. There were two adults or two educators for eight children. And no additional person supporting him.
CHAIR: So this is in the special options class.
ISABELLA: Yes.
CHAIR: Before the specific options class, Emerson had attended half days at the previous school.
ISABELLA: Mmm.
CHAIR: And I've just been looking at the paediatrician's report of 10 August 2011, and I gather from that that, at that stage, Emerson had 10 hours of support per week. Was that the position?
ISABELLA: I have forgotten the I have forgotten the exact number. I suppose that I told I told the paediatrician that, so that might be the correct number. Yeah, 10 hours would only have been two hours a day. I thought he was there for half the day. That doesn't quite add up, does it?
CHAIR: Well, that's what's in the report. But I understand there may be
ISABELLA: Yeah, I'm not sure the exact number of hours, actually.
CHAIR: There may be some doubt about it. But the report from August 2011 says: "There are only eight children in his class at the moment, so he is able to attend about half time." The eight children, was that a separate class or was that just part of a mainstream school with other children who were not children with disability?
ISABELLA: That's right. That wasn't a special class. That was a class that just happened to have eight children.
CHAIR: That's unusual.
ISABELLA: It is unusual, but I think it's because they were all mid year they had all started mid year and the other classes were full.
CHAIR: I see.
ISABELLA: So there was a decision well, they wouldn't have broken up a class mid year in order to form two classes. They just decided to have those eight mid year starters all together.
CHAIR: I understand. The eight hours per week sorry, 10 hours or whatever it was, 10, 12, that this, of course, is pre NDIS.
ISABELLA: Yes.
CHAIR: So that came from what source, that support?
ISABELLA: From within the Department of Education.
CHAIR: And had you applied for additional support or more support than that or is that what you had asked for?
ISABELLA: We wanted there to be more support the following year, when he had longer days, but we were told that wasn't going to be possible. That was the limit, that he wouldn't get any more support.
CHAIR: The limit for Emerson or the limit for everybody?
ISABELLA: Mmm, I don't think I asked if it was a limit for everybody. But it was definitely the limit for Emerson.
CHAIR: Right. Okay. Thank you.
ISABELLA: We were told.
MS EASTMAN: So we are at the new school in the special options class. By 2013, that particular special options class moved from the regular primary school to another primary school.
ISABELLA: That's right.
MS EASTMAN: So it was just picking up the options class and taking that class to a new primary school.
ISABELLA: Yes. Yes. There was a lot of transitions going on there.
MS EASTMAN: So this is the fourth primary school for Emerson in 18 months.
ISABELLA: Mmm.
MS EASTMAN: How did he fare at his fourth primary school, although he still had the same class.
ISABELLA: Yes. It was the same group of children, for the most part. There may have been one or two changes. A new teacher and a new physical school. It went well overall. He was a really good fit for that group of children. The classroom was quite large, and the it was similar. There was a teacher and a full time SSO, and he continued learning his letters and starting to do sight words as well. So we were pretty pleased with that.
The challenges were mainly around being in a mainstream school environment. Again, recess and lunch. Those unstructured times were very hard for Emerson and because he didn't know quite what to do with himself. He didn't engage in play with other children. He was still at the sort of parallel play stage. So he would get he had a bit of trouble during those times. But any behavioural issues were, in that particular class, dealt with fairly well. There was we were encouraged to be involved in that, and he was supported pretty well.
MS EASTMAN: When he was in year 2, you were told that a further updated psychological assessment would be required for the primary school's special options placement for the following year. And that's Emerson going into year 3. So that testing was done again. Was there any difference, as far as you remember, in terms of the outcome of that testing that was done in 2014?
ISABELLA: Well, we they again attempted the IQ test, and I wasn't told very much about how it had gone. My my initial I initially had been told that it might happen over two sessions, but, as it was, it happened over one fairly short session. And there were results from it. So he must have engaged with it to some degree. And he however, the overall conclusion was that he would qualify for continued special education.
MS EASTMAN: So he then transitions into year 3, and it's a different type of set up. The class is larger and some of the students in the class were older. So he was going from a smaller sort of junior primary up from students who were year 3 up to about year 7. Is that right? So that might be kids up to about 12 years old. Is that right?
ISABELLA: Potentially, yes. I believe that's how the set up generally works in South Australia there in these special options classes. There are two in a given mainstream primary school. One for years reception to year 2, and another class for years 3 through 7, it was at that time. Primary school still went up to year 7. So that's a pretty big age stretch, between year 3 and year 7.
MS EASTMAN: How was that transition from Emerson and how did he fare in that classroom environment?
ISABELLA: I believe he was the only child to transfer up that year. So he was the youngest. And he was no longer a good fit with the other children. They were in addition to being older, most of them were much more verbal and much more socially engaged. They would they were also more able to sit at a desk and do, you know, pen and paper school work. Emerson's ability to write it's something he really struggles with, the motor coordination involved with writing.
MS EASTMAN: Did he become stressed in that class?
ISABELLA: Yes. Yes. It was a dramatic change in his behaviour in that class. He started acting out. The teacher was very good, but the class was a bit larger. I think it could have had up to 12. I don't remember exactly how many were in it, but I think those primary level classes, instead of being 8, they could be up to 12. So it was bigger. The teacher was very good, but with that many special needs kids, sometimes and with Emerson being sort of the odd one out and not being able to access the same work as the others, or sit still as long as the others, it was a very difficult situation for him.
I don't think it's that great for a kid to be the least able in their class, because the demands and expectations were just higher than he could live up to. So he was it was a lot of being told what to do and feeling I think he felt frustrated and also isolated in that situation. And
MS EASTMAN: I think you describe Emerson as being out of his depth.
ISABELLA: Yes.
MS EASTMAN: In that environment.
ISABELLA: Yes, socially as well. The other children would chat to each other. I think he found that quite off putting. He didn't know how to respond. There was too much noise, too much being demanded of him just socially. There wasn't it was a smaller room. There wasn't a good place for him to sort of take a break from that. And when things went wrong, their only recourse was to call the principal in, which didn't work very well for Emerson.
MS EASTMAN: Well, in that respect, I was going to invite you to perhaps read paragraph 51 rather than me asking you some questions about this. The way you've described the events in paragraph 51, the Commissioners may wish to hear that in your own words.
ISABELLA: Can I preface it by saying something?
MS EASTMAN: Of course. Yes, of course.
ISABELLA: I think the principal was used to dealing with typically developing children, where being given a stern talking to by the principal is something that has an effect on their behaviour. He probably didn't have any background or training in special needs kids. So so in any case:
"I was at the school one day and observed the principal shouting in a student in the hallway. On another day, I was called by the school to come and pick Emerson up early after he had had a meltdown. I don't remember what started it, but the teacher had called the principal in. The principal decided to take Emerson outside to give him a bit of a break and help him calm down. And Emerson was still upset so he stripped off all of his clothing in the playground.
Understandably, the principal must have been perturbed to find himself in the playground with an undressed child, and I was called to pick up Emerson. When I arrived, Emerson was sitting in the front office."
He had completely calmed down by then. And the principal was quite concerned about this behaviour, and he turned to Emerson and he sorry I'm not reading. I'm going off script. But he said to him, "Why did you do that? Why did you take off your clothes?" And at that time, Emerson was not even able to answer a simple why question a very basic why question, much less due to his language delay much less a question that even that any child might have difficulty answering. So due to frequent challenging behaviours and calls from the school, this year was very stressful for our family.
MS EASTMAN: The stress that you saw for Emerson and the stress on the family meant that, towards the end of the year, you started to think about some different options. And in the last term of 2015, Emerson was offered a place at a special school for the following year. You had been giving Emerson medication to manage the ADHD, to try to help him function better in the special options class. And, again, as you said, it helped him sit down and focus but it had the side effect of making him anxious. You say, "We realised the medication was not working for Emerson. We decided to take him off it. And it was over the summer holiday period Emerson started attending this special school."
Can I just ask you about that. Did you have a concern that if Emerson was to remain where he was, that to be able to participate in that environment would mean that he would need medication to enable him to engage? And, for you, there was almost a trade off between medication to help him focus but the consequent increasing anxiety. Were you concerned that those seemed to be the sort of only options available to you at the time?
ISABELLA: Yes, that's true. And although I didn't mention it in the statement, he had also been trialled on some other medications specifically for his challenging behaviour to because in that class was the first time he started to do things like, you know, throw things around, tear things off the wall, hit other kids. So it was yeah, I think there was additional medications that would have been necessary if he had stayed there.
But, really, the fact that his behaviour had worsened so much going into that other class was it was pretty clear to me that it wasn't suitable for him, and this appeared to be the only other option.
MS EASTMAN: So by year 4, Emerson starts at a special school, and that's been his school since year 4. He's still there now. And
ISABELLA: Yes, yes, it was no, go ahead.
MS EASTMAN: No, I was going to say, in your statement we haven't asked you to go into detail about the special school and each year of his learning. But we did ask you whether you had a view on the benefits for Emerson in this environment and how is he progressing in this environment? Do you want to speak to that?
ISABELLA: Yes. Well, he's been there as for quite a while now, and there's been ups and downs. But when he started, the transformation in him was was really quite amazing. There was no more of that violent behaviour.
MS EASTMAN: He wasn't on medication, was he, when he started the school.
ISABELLA: No, because we had taken him off it over the summer because we were concerned about the side effects and we wanted to see how he would go. And, yeah, the attitude was something that that was hugely different. Instead of every day getting a rundown on all the things Emerson hadn't done right and had done wrong, he was getting praise for all the things that he could do, for all of his strengths. The focus was really on his strengths, for how well he could read, and for his, you know, how well he was communicating and his verbal ability. So it was a huge relief.
MS EASTMAN: You've mentioned expressly the importance of the attitude of the teachers in this school to support Emerson and make him feel included. What's the when you are talking about the attitudes, what particular things have you observed that really have assisted Emerson to feel that he's part of the community there in a way where that you describe for Emerson coping in a mainstream school, that he would feel much more isolated?
ISABELLA: I think well, the attitude is critical. Emerson I sometimes call him an emotional barometer because he picks up on what other people are feeling around him. He can't put words on that or respond to it the way a typical child would well, occasionally he does. Occasionally, he will show a clear reaction of empathy and help for someone, if, for example, they have fallen and gotten hurt. But though he usually reacts when someone else is upset is he gets upset himself.
So when he was faced with an angry teacher or principal, he would just get more aggro and angry himself. And it was a spiral from there. Whereas in the special school, nothing that he could do really almost nothing could shock them. They understand that his behaviours are a reaction to his own internal emotional state, that he very easily gets into a state that, you know, a psychologist might describe as a fight or flight or freeze response where he is acting impulsively.
Just, in his case, often it is a fight response. So he's basically not in control of himself at that stage. And if he's starting to escalate, sympathy and a calm demeanour and letting him know that you are there for him, you're not blaming him, you're not angry, you want to support him and help him get through what he's facing, it makes such a big difference. Does that answer the question?
MS EASTMAN: Of course. In terms of communication, I want to ask you two things. You've given an example of Emerson having bonds and communicating without language. And you might want to speak to that. But also to tell the Commissioners what's happened for Emerson in terms of communication, the tools that are available to him and how his communication assists him in attending school and then also just in life. That's three questions in one.
So I don't know if you want to sort of start with the example which you give in paragraph 62 about the jacket and this illustrating a way in which Emerson creates bonds without language and how powerful that is for him in terms of connection, developing friendships and relationships. So if we start with that one.
ISABELLA: Yes. I mentioned before that he didn't know how to engage with those children who were so verbal and wanting to chat with him. He does a much better job engaging with someone who is closer to his level of communication ability or even someone who's less verbal than he is. And that was the example that I put in. He was really enjoying being around one of his classmates, a girl who doesn't speak much. I'm not sure if she's non verbal or she's just very quiet, but he kept coming home and talking about the school jacket and how this girl had the school jacket and how he wanted a school jacket.
And I was really impressed because it's the first time he had ever expressed any interest in doing something because one of his peers did it. So, of course, I got him the school jacket and then I went along on a school excursion, and the girl arrived and he was there, and she went up to him and just touched the jacket on his chest and he touched her jacket. And they smiled at each other. And that was, you know, that was just such a warm interaction, friendship that they had that and he so he actually has more social connection in the special school than he was able to have in the I mean, generally in the other schools. So he did make some friends in the special class as well.
MS EASTMAN: And then my other question was really about communication generally. So we've talked a little earlier about developing those communication skills pre kindy and in kindergarten. In terms of his experience in his current school, how is he going in terms of developing communication skills?
ISABELLA: He's continuing to develop. He's developing all the time. It's very hard to say how much of it is due to school and how much of it is to due to the rest of his environment. He likes he likes the written he likes books. He loves books. He he's also been given opportunities to use alternative communication. The school is very proactive on using Proloquo 2 Go on the iPads. And they model that constantly.
The teacher and the assistants will wear them around their necks so that they are always available, and they use it as part of their learning tools. He's been able to learn to type a bit so he can go on YouTube and put in his topics usually Hot Wheels cars or marbles and find the things he wants. So and just being able to express his interests and his needs is huge and obviously has helped his education.
MS EASTMAN: Emerson is an NDIS participant, and to what extent has the supports through his NDIS plan assisted with school? Is there a relationship between support through NDIS and supports through school?
ISABELLA: Yes, there is. And it's a bit murky because the official line is that outside therapists can't come into the school but, in practical experience, there have been therapists that have come in from outside. At one point when Emerson hit puberty, his behaviour became more challenging again. That's why I did say there had been some ups and downs. So they had brought in an outside developmental educator to help develop a behaviour management plan for Emerson. And that was very helpful.
So we were able to also engage him through NDIS funding. The initial consultation, I think the school arranged but the continuing his continuing services with Emerson come out of his NDIS funding.
MS EASTMAN: Does the NDIS funding also support Emerson in building up friendship networks and groups outside the special school? Do you have support around that?
ISABELLA: Yes, but we have to we have to organise that. But it is starting to happen a little bit that way.
MS EASTMAN: So that's going to the small groups with other students and practising some daily task, cooking. Playing games?
ISABELLA: That's within the school, yes.
MS EASTMAN: Oh, that's within the school.
ISABELLA: That's also within the school. So there is a speech pathologist and an occupational therapist who come into the school, and a few of the children who have NDIS funding for that sort of thing are taken into a small group for activities such as playing games to work on social interaction or cooking, some little daily living skills. So that's been very positive for him.
CHAIR: In paragraph 64 of your statement, you say that at the special school, Emerson is supported but not one to one, which allows him to be more independent. So when Emerson received funding through the NDIS, which I take it was in about 2016 from your statement relatively early was there any increase in the support from that which he previously received?
ISABELLA: In terms of at school?
CHAIR: Either at school or with the support that you've just mentioned of, for example, psychologists or speech therapists or whatever?
ISABELLA: When it started, that was mostly it was entirely, I think, outside of school. And it was very helpful, but it wasn't it wasn't very well integrated with what was happening in school. So that came about later. Because his behavioural problems increased after he had been there a couple of years, he was able to tap into additional NDIS funding specific to behaviour, which gets called relationship capacity building relationships funding, which is what we have been using to help with that developmental educator and the behaviour plan.
CHAIR: And what support does Emerson receive in class in terms of whether it's for part of the time, full time, whatever.
ISABELLA: He doesn't receive any support that's directed towards him in classroom. Other than that one example where he goes and I think it's once a fortnight, where he does this small group activity. Otherwise, he's just supported along with the other eight children in the class by the teacher and one additional aide. It's never been there are some children at the school who have a one on one person with them, but Emerson hasn't required that.
So that's what I meant by the independence, because I think in a mainstream school, for example, if the children were walking out walking from one part of the school to the other, he would have always had someone by his side. Whereas this way, the teacher will lead and the students will follow independently, much like in a mainstream school. And he's able to do things like run errands to the office independently. All sorts of things that would have been hard in a mainstream set up.
CHAIR: Thank you.
MS EASTMAN: So Emerson's now in year 10, and you've started to think about, well, what is the next transition for Emerson as his education in the primary and high school setting, this is all soon to come to an end.
ISABELLA: Mmm.
MS EASTMAN: And when he started the senior class year at the school, a school connected you with somebody called a transition coordinator. You describe in your statement as the person being very proactive. Can I ask you what is a transition coordinator, and when you say that person's been very proactive, in what respect?
ISABELLA: Well, I should say that the transition coordinator who I originally met is no longer at the school and I haven't made a relationship with the new one yet. But what I observed last year I was on a Seesaw message group for the senior students, and that transition coordinator organised information sessions for parents about post school options and also organised tours for students and parents of various day option programs or work option programs in the community so that we could start to see find out what's out there and what would be best suited for our kids.
So that that's really going to be helpful, I think, moving forward. Now, this year I did go to one of those meetings last year, but I haven't gone to too many of them because I felt that Emerson still had a few more years of school, and by the time he would be leaving, things would have changed. So I decided to wait until year 10 and start to get more involved now. I did go to one last year which was really good. A group from outside came in. I can't remember what they are called but they really work on helping kids with disability get open employment in the real world, real jobs.
They will come into the school and meet the student and try and work out what their interests are and goals and try and match them up with an appropriate work experience. So I haven't yet contacted that organisation to see how that might work, but funding for that, I think, does come from NDIS, and there's some school leaver funding that one can get when one is a little bit closer to the end of the schooling.
So I haven't quite worked out the timing of that, of when I will get that funding, when I can start using it for that particular purpose. But, meanwhile, the school has also set up some work placement, work experience.
MS EASTMAN: Where is the work experience and, assuming Emerson has done some work experience, what are the work experience options for him?
ISABELLA: I haven't been given a run down on all the options, but this and I think it's possible that COVID has scrambled that program. They probably had a more established program and now they are sort of having to reinvent it as things open up again. But this previous term, term one, he went to a Australian Disability Enterprise site, where he was given experience at labelling and packaging items.
MS EASTMAN: How did you feel about that?
ISABELLA: Well, not every child in the senior school gets to go to work placement. They chose the kids, the young people who they felt would cope with it, I think, or have the ability to do that. And so I was very pleased that that Emerson is doing well enough that they considered him for that. And I didn't know how it would go but apparently he quite enjoyed it. They make they made it fun for the young people. They it's an excursion. You know, getting out of school is always exciting, and they go to the park afterwards and have a picnic lunch. And I think it's only a couple of hours, but he seemed to quite enjoy it. And he's come home and talked about it, which is great, because he doesn't talk about a lot that happens at school.
MS EASTMAN: Has he sort of talked to you or expressed any ideas about what he would like to do after school?
ISABELLA: That's a kind of an abstract question for him. So if I just out and out ask him that, I don't often get much of a response. But he has mentioned it on his own accord. Once I think once he did respond to that direct question, what would you like to be when you grow up sort of question, and he said he wanted to be a stay at home balloon salesman. Which was interesting.
MS EASTMAN: I wonder where he got that choice from.
ISABELLA: He loves balloons. So maybe there could be some future for him working in a party shop. I don't know. And he's also mentioned he would like to be a bus driver and that might be a little ambitious.
MS EASTMAN: But at least having the opportunity for him to say this is what he would like to do as you say, it might be abstract, but that may sort of give a sense of what options might be open for him and how to explore them.
ISABELLA: Yes, well, getting these different experiences through the school will give him some options that will be concrete to him and that he can, I think, choose between. They are starting a new work experience this term at a small vineyard and orchard down in the [REDACTED]. And so that's something totally different. I think they might be picking apples and feeding farm animals. So they it was bad weather, the previous week that they were supposed to go, so instead they took them all down to the shopping centre and bought them all gumboots so they would be prepared for the visit.
So I think he enjoyed that, and it's a new experience. And he came home and he said he said, "What's an apple?" Just out of the blue, "What's an apple?" And a lot of times when Emerson wants to bring something up, he will just ask a question like that. A question he knows the answer to, but he's trying to bring up the subject. So I said, "An apple is a fruit" and then I put two and two together. I said, "Oh you've been to the orchard. Did you pick apples?"
So he's finding it, I think, stimulating and hopefully something can come out of it. But, again, it's a little bit unclear what's going to happen once he's actually out of school and how these options can be actually implemented for him.
MS EASTMAN: Has anyone given you any advice or assistance to work through what those options might be so that Emerson can have some choice about what the future holds for him?
ISABELLA: I haven't been given an overview of that.
MS EASTMAN: Do you know where to get any information about the transition from school or options after school?
ISABELLA: I need to talk to this new transition coordinator, I think, and make a time to meet with him or her and find out the bigger picture of how this works. Yeah.
MS EASTMAN: I think you've said in your statement you would like to see more overlap for Emerson between school and home, for building independence and life skills. And it would be great to have more coordination for these things. Is that the sort of what you would like to see happen in these next two years before Emerson finishes school?
ISABELLA: Yes, I feel like Emerson is doing more independent things at school than he is at home. At home, he has his routines and the routines are that mum and dad do all the cooking and the cleaning and the various household tasks. Whereas at school, if they say we are going to do laundry and I think they do wash the PE uniforms to get some experience doing laundry he will do that, but at home with mum and dad, he won't.
So being able to extrapolate those skills that he's learning at school to home, it's a bit tricky, and it would be better if there was a bit more overlap there.
MS EASTMAN: We have asked you the abstract question about what your hopes are for Emerson into the future, and you've said:
"It's difficult to envisage what Emerson's future might look like. His ability to do things is very different at home compared to school. At home he is set in his routines and he expects us to do almost everything for him."
As you've said with the cooking and cleaning. And you've said it's very hard to get him to do things independently. He is tired when he gets home and it's difficult for you to push him. At school and on outings with support workers, they get him to do things that you could not imagine he would do. So that sense of Emerson being at the school or at home, and the differences for him in those experiences, is this what causes you that sense of saying what the future might be for him?
ISABELLA: Yes, definitely. I think it becomes a challenge with the NDIS, perhaps more than school, because it's hard to I haven't had a whole lot of success explaining to the NDIS that we need core supports for Emerson to spend time away from home so that he can build his independence, because it's very hard to see how he can do that if he's at home. But I would like to see a situation where he could gradually move to more independent living with support, but it's very hard to work out how that's going to work because the funding is so uncertain.
MS EASTMAN: You see for him, in the future, an opportunity for him to be in the community much more than he is now. And this is informing your thinking about where he might live. So if he's at home and everything is done for him, you have that concern about him developing the skills and the independence. So you're also starting to think about what the accommodation might be for him in the future after he turns 18. It must be a very difficult process for the family and for routines. So what supports and information do you need to have to ensure Emerson's options for accommodation and being able to participate in the community can be realised?
ISABELLA: There are a lot of support agencies out there, and I suppose that a support coordinator, NDIS support coordinator, in theory could help with this, but, in practice, they haven't been terribly helpful. They can point you towards various agencies and say, "I've had another client who's had a good experience with this agency" but it's still up to the parents to contact that agency, tell them about who Emerson is, and give it a try.
I think it's a bit of trial and error. So my focus right now is to to use supports that are available to adults as well as children. Because, quite often, the supports will only be for children or only for adults, but, obviously, we have got to get him used to whatever he's going to be doing as an adult. So I'm trying to find support agencies that that he can start getting involved with now and that can support him to greater independence in the future, but I'm still searching. I'm still in the trial and error stage and I haven't really found one that that's going to be able to help us with that. So it's a big task.
MS EASTMAN: We also asked you whether there were any suggestions for change that you wanted to share with the Royal Commissioners, and we thank you very much for the detail and the care that you've set out in your statement in terms of suggestions for change. And I wondered if you wanted to speak to the matters that you've set out in the statement, which, Commissioners, start at paragraph 75 on page 19. And, Isabella, if you wanted to speak to all or some of those points there. I won't ask you about each one in turn, but I know that you've reflected on these matters this morning and there is some points that you want to highlight for the Commissioners.
ISABELLA: Yes. Thank you. As I've written, I would like to see a well defined, transparent and collaborative process that fully includes parents for determining the best educational options for children with disabilities as they progress through the school system. It needs to be a team approach. Parents have to be involved, also allied health professionals, including the private ones from outside the school, the educators of the schools involved, and I think it would be really helpful to have someone who could see the big picture, a sort of case manager or an advocate for the child who can get to know the child and what their needs are and look at all the options and advise what what would be the best for the child, rather than the situation now where you have the Education Department telling you, "He should be" or "He should be there", which seems to be based more on where there's space.
I had the feeling in the early days there was a lot of gatekeeping around the special options, "Oh, no, he wouldn't be eligible" based on very little observation of Emerson by people who didn't know Emerson. So I believe there is something that there needs to be a team approach and perhaps another role to help make that happen. Perhaps someone who could have said, "This primary school might be better than this other primary school."
Which leads me to another point, which is there is this incredible inconsistency between schools and amongst schools in how supportive they are of children with disability. And that really needs to be addressed. And I think the earlier speakers, the one just before me, made some good really good suggestions about how that might happen. So that every school is equally supportive and it's not sort of hit or miss or having to search for one.
I think school placement should be based on evaluations by professionals who have long term contact with the child rather than on the results of standardised testing or brief observations. Intelligence can be underestimated in children with autism and/or speech or language disorders, and even children with high IQ scores can require a high level of support in educational settings due to social disabilities or anxiety.
In thinking about that, I am thinking that there's at least three characteristics of a child that have to be looked at. One is the cognitive ability, which may or may not be measured by standardised tests, but another is the social and emotional development of the child. So it's going to some some very bright kids will just not be able to learn in mainstream school because of the social and emotional issues that prevent them from feeling safe there and learning.
And also there is sensory issues that have to be taken into account, because it would be very hard to make a mainstream school manageable for a child with intense sensory issues. You just can't get a school of, you know, 500 kids to be quiet. So I think at least those three baskets of things have to be looked at for the individual child. There's probably more things that I haven't listed like, you know, cultural differences, things like that. But I don't think that that the child is being looked at holistically enough.
I think a dedicated transition support worker for each child that covers that leap from kindergarten to school would be very helpful. It perhaps wasn't ideal having the kindy teacher coming into the school. The leap from kindergarten to school is huge. Even for typical children, they struggle, and for special needs kids, it's always going to be even more difficult. So having someone that is familiar with the supports for that student follow them through that transition, I think will be very helpful. And I also think it's important to start with high very high levels of support and then taper off rather than starting with minimal support and then bringing more on once a crisis occurs.
There clearly needs to be expanded support for teachers, including assistance to implement individual classroom supports and teaching strategies. And better special education training for mainstream school leadership and teachers. Most of the teachers and school leaders that we had experiences with were very well meaning but didn't have the skills and abilities and knowledge to support Emerson.
There really needs to be increased individual support for students in mainstream and special classes, and, again, it shouldn't take a child undergoing a behavioural crisis to get the appropriate level of support for them in school. There needs to be an increase in the number of special small classes or special options classes in mainstream schools. I think it would be ideal if all of the larger primary schools could have some special education classroom options, because it does allow children who are able to move out into the mainstream school for some of their lessons. And I saw that working quite well for other children in Emerson's class where he didn't quite fit in, but it worked really well for those children.
And I think there needs to be an increase in the availability of special school places as well. This scarcity thinking, or scarcity feeling leads to this gatekeeping situation where parents aren't given the choice of a more supported school option. They don't know it's there. They don't know. And it's because they're because those schools are overloaded. So I think there needs to be more of those schools as well.
I think when you do have a special options class within a mainstream school, there needs to be more support for those teachers, such as allied health services, like developmental educators, occupational therapists, speech pathologists and psychologists who can come in to help when things get difficult, because the mainstream school will not have those people on hand.
And my hope would be that mainstream schooling could be made a real option for all children, while also continuing to supply provide well equipped special school options for those children with the most complex needs.
MS EASTMAN: You conclude your statement by saying this, that you believe that Emerson was effectively excluded from mainstream education due to a lack of sufficient support in the mainstream schools he attended:
"It is disappointing that it took four different schools before we were able to find him a place in his current school which is now meeting his needs. This has caused unnecessary stress to Emerson and our whole family and may have significantly disrupted his potential to learn academically and socially in his formative years. Looking back now, and on reflection, it may have been less stressful for Emerson if we'd taken the advice of the local kindy and put him in special education from the very beginning. That may have been a gentler process for him."
I think you encapsulated in that paragraph that often tension that's seen as that the options are limited to one or the other. And for Emerson to be in the middle of that, and that the either system of working for him at that as you said, that starting point in school from kindy to primary school. He's had a rocky road, hasn't he?
ISABELLA: Yes, it does feel like there was trade offs where his emotional health may have been better if he had been in special education because he wouldn't have been put in those situations where he was expected to cope in an environment and with expectations that were too high for him. I think that led to his anxiety, that led to his behaviour issues, which now include self injurious behaviour when he gets upset.
That may not have developed the same way if he'd been in a more in special education from the beginning. On the other hand, he might not have learned to read as well as he does now if he had been. So it is unfortunate that it's such a binary choice.
MS EASTMAN: Isabella, thank you very much for your evidence and the as I said, the care in which you've prepared the statement and worked with us. Thank you very much. The Commissioners may have some questions for you.
CHAIR: Thank you. If you don't mind, I'll ask my colleagues if they have any questions, starting with Commissioner Galbally in Melbourne.
COMMISSIONER GALBALLY: Thank you so much for your statement, and I'm so glad Emerson's doing well now. I have no questions. Thank you.
ISABELLA: Thank you.
CHAIR: Commissioner Mason.
COMMISSIONER MASON: Thank you, Chair. Thank you very much for your evidence today. I had a question about the Positive Partnerships matrix, and the program that you attended. Was that recommended who recommended you to attend that?
ISABELLA: I found out about that somehow. I don't believe it was through the education system. I believe I have been involved with a number of parent support groups. One of them being MyTime. You may have heard of that. In any case, those were excellent clearing houses for all sorts of information about programs and education for parents. So I might have heard about it through that, or it's possible I did hear about it through the kindy. I'm afraid I don't remember.
COMMISSIONER MASON: Okay. And excellent information on it, that at the bottom of it is strategies around those particular in those particular columns, and you thoughtfully provided information to that first teacher based on this information. Do you know what impact this information had for the educator and for other educators in that first school?
ISABELLA: They
COMMISSIONER MASON: Or in subsequent schools?
ISABELLA: I thought it would be helpful and we were told in this seminar that it would be helpful. But in retrospect, I think it may have seemed all a bit too much for her to take in. Yes, she did have a class of 20 to 30 students, and it probably seemed like a lot of additional supports and changes to the way she normally operated her class, and she didn't have enough resources or support to do that.
COMMISSIONER MASON: And just asking with other teachers that Emerson had then, were you able to provide this information to other teachers and
ISABELLA: Yeah.
COMMISSIONER MASON: if there was feedback?
ISABELLA: Most of those sort of things are now part of his One Plan, which is like the negotiated education document, the when I say the One Plan. So that once he started having those, those all that information is pretty much in there. So it goes with him and helps guide his teachers. Yes.
COMMISSIONER MASON: Okay. Thank you.
CHAIR: Did you happen to listen to or observe Julie's evidence this morning?
ISABELLA: Yes.
CHAIR: You've each offered extremely interesting, very thoughtful, if I may say so, perspectives, but rather different perspectives. I just wondered if you had any comment on what Julie had to say about her vision for education for children with a disability.
ISABELLA: I think Julie had some really excellent ideas. I liked this idea of having every student every school be prepared to be inclusive, and I liked the idea of having a score card. She had a lot of great ideas. Maybe the only thing I differ with her on is that I still believe that there is going to be a subset of children with disability who just will not be able to learn in a mainstream school, that, although, you know that they would still need to be purely for the environmental factor of, you know, having a quieter, calmer environment. It's also hard to know well, I think I think her vision is great, but it's going to take quite a while to get there. Now, she did have excellent suggestions for how to move in that direction. So we really don't disagree on very much.
CHAIR: Thank you.
ISABELLA: Except that special schools, I think, will always need to be there for some kids.
CHAIR: Well, thank you very much, Isabella, both for the statement and for giving evidence today. As I've said, your statement and your evidence very thoughtful, very interesting and very helpful to the quite difficult decisions that we have to make about proposals for the future. These are not easy issues to resolve. They're rather complex, in fact, and we are very much assisted by the evidence you've given, that Julie's given and others have given at this and other hearings that we've held. So thank you so much.
ISABELLA: Thank you. I'm grateful for the opportunity.
<THE WITNESS WITHDREW
CHAIR: Ms Eastman, I'm struck by the fact that we're ahead of schedule.
MS EASTMAN: By five minutes. That's good for me. Commissioners could we adjourn now till 2 pm.
CHAIR: We'll adjourn until 2 pm. Yes. Thank you.
ADJOURNED 12.55 PM
RESUMED 2.00 PM
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Thank you, Commissioners. I'm very pleased to invite back to the Royal Commission they may not feel that way but Mary Sayers, the CEO of Children and Young People with Disability Australia and Catherine McAlpine, CEO of Inclusion Australia. They've both given evidence in the Royal Commission before and, as I said, we warmly welcome their return. As I said, they may not feel that way. We had hoped that we would have both Ms Sayers and Ms McAlpine together in person, but you will see, Commissioners, Ms Sayers is appearing remotely and Ms McAlpine is with us in the hearing room. They're both going to take an affirmation.
CHAIR: Yes. Thank you very much, both of you, Ms Sayers and Ms McAlpine. We regret that you can't both be here in person, as was the original intention, but, subject to IT, we will do our best to ensure everything goes smoothly. If you wouldn't mind, each of you, just following the instructions of my associate, and she will administer the affirmations to you. Thank you.
<MARY SAYERS AND CATHERINE McALPINE, AFFIRMED>
CHAIR: Thank you very much. Just to make sure you're familiar with where we all are, Commissioner Galbally, you will see on the screen, is in Melbourne, joining the hearing from there. Commissioner Mason is with me in the Canberra hearing room and, of course, Ms Eastman is also in the Canberra hearing room, and I'll now ask Ms Eastman to ask you some questions.
<EXAMINATION BY MS EASTMAN SC
MS EASTMAN: Thank you. Can I just start with some formalities and, Ms Sayers, may I start with you and confirm your name is Mary Sayers.
MS SAYERS: That's correct.
MS EASTMAN: And you are the CEO of Children and Young People with Disability; is that right?
MS SAYERS: That's correct.
MS EASTMAN: And, Ms McAlpine, you are Catherine McAlpine.
MS McALPINE: I am.
MS EASTMAN: And you are the CEO of Inclusion Australia.
MS McALPINE: That's correct.
MS EASTMAN: Commissioners, this afternoon is an opportunity to have a discussion, and this discussion will be based on what we have identified as the themes emerging from the evidence over the course of this week, but it's not just the themes from this hearing. We have gone back and looked at your hearing reports, Commissioners, for Public hearing 2 and Public hearing 7, and we've also had the opportunity of carefully reviewing the submissions made by CYDA and the submissions made by Inclusion Australia and also looked very carefully at the evidence that Ms Sayers and Ms McAlpine have given in the previous hearings.
Ms McAlpine has talked to us about the concept of polished pathways, and that's very much informed some of our thinking about looking at transitions, understanding choice, understanding the impact of a world of inclusion, but also a world of exclusion. So, Commissioners, how I'm proposing to run the panel this afternoon is we've agreed on a range of particular topics, and I've got some questions for both Ms Sayers and Ms McAlpine based on those topics, and, if it would assist the Commissioners, that if the Commissioners have any questions as we go along, rather than save them all up for the end, if the Commissioners have got questions on the particular topic or issue that we deal with, to deal with them at that time.
So I want to start with the topic of choice and options, and we've heard those words, choice and options, throughout this hearing but also in earlier hearings. And the Royal Commission has generally heard that parents want meaningful choice and options for their children. If I think about choice and we think about education in Australia, there's a wide range of different educational options. There's public schools. There's independent schools. There's single sex schools. There's co-ed schools. There's religious schools, Deaf schools, sports schools, boarding schools, community schools, home schooling and distance education.
So given the nature of the different types of schools and settings, one question arises in relation to the choice for students with disability, and it's often presented as a very binary sense of choice or options. We hear, on one side, mainstream or general schools and, on the other, segregated schools, be they units within regular schools or separate schools altogether.
I want to start by asking both of you does the language of parental choice and casting the choice as binary options mask the real issues for children with disability in their education? So, Ms Sayers, I might start with you, just to make sure our sound is all working and the remote functioning is working well. Can I start with you?
MS SAYERS: Thank you, and before I begin, I'd like to acknowledge the traditional custodians of the land in which we're meeting, and I'd like to pay my respects to elders past, present and future and to acknowledge that this was and always will be Aboriginal land, and sovereignty was never ceded and to also acknowledge any First Nations people watching today and also our First Nations Commissioner as well.
The challenge with choice is it looks at one option versus another, and when we think about students with disability, it's often seen that a special education is the one that's the best for students with disability, and that's really a commonly held view, that students with disability do better in special education. And by special education we mean either a special school or some sort of a unit. And I guess what that does is this belief that students with disability might best
MS EASTMAN: I might just ask you to slow down a little bit. We've got ample time, but perhaps just slow down a little, if you can. Thank you.
MS SAYERS: Thank you. And choice assumes that you're choosing between two things of equal value. But what we say is and what we've heard at this Commission is neither mainstream schools nor segregated education is working. And when we look at choice and what influences genuine choice is things like having knowledge, having information, having power, knowing that the choices you are making are going to lead to good outcomes. So we often think about choice in a number of ways. So there's pervasive choice, which is of a higher order than, say, lifestyle choices or everyday choices.
So to explain further, an everyday choice is, you know, what I might whether I have Coke or whether I have coffee. A lifestyle choice might be, you know, how do I decide to get up and live my day. But a pervasive life choice is something that impacts on the rest of your life. And we would argue that education is a pervasive life choice.
And another thing that's really important to emphasise about choice is it's based on, often, if you have strong knowledge of the impacts of the choices you're making, that you've got support for decision making and you've got power in resources and relationships. When we're talking about choice for students with disability, we're not talking about choice for two equal things. We're talking around, often, a choice between a mainstream school that really doesn't want you there or puts a whole lot of barriers in the way, or a special school that makes you feel welcome. And so is that a real choice? And that coercion in that choice needs to be considered.
We would say if you had a choice between two schools that were equally inclusive in mainstream education, that would be a real choice, and the types of settings that you talked about between single sex, religious schools, if they were all inclusive, then parents would have a true choice.
And I guess the final thing I'd like to say before handing over to Catherine is there's not really good knowledge in the general community about the evidence. And we conducted with Kathy Cologon, who wrote for CYDA a report on the evidence of inclusive education, and that incorporated over 400 research papers, relevant treaties and reports to explore the evidence around inclusive education. And the research is resounding for inclusive education, but there no strong evidence for segregation.
But this evidence is not really well known across the Australian community, and I know we'll be talking later about influences of choice. So I guess, to sum up the end to that question, we would say that many of the choices that are made by families are coercive choices because it's not a real choice based on full inclusion.
MS EASTMAN: Ms McAlpine, can I ask you that question about whether the language of parental choice or casting choice as binary options sort of mask the real issues for students with disability?
MS McALPINE: Thank you. It's my first time at the microphone too so I'd also like to acknowledge the traditional custodians of the land that we're meeting on today and pay my respects to the Ngunnawal people and elders past and present and to especially pay respects to people Aboriginal and Torres Strait Islander people in the room and listening today.
It's interesting, even the framing of the question sort of says it's cast as a binary choice, whereas I feel it's the reverse. The systems force a binary choice on families in that what you have is that array of things that we would all call mainstream, and we hear consistently that all of those mainstream settings point people to the one other thing, which is the special school setting. So it's not that the families are necessarily looking at it in a binary way, but the systems force you into a binary choice. And the other thing well, again, I'm going to use "choice" in inverted commas in the same way that Mary did, because it's not a choice if one system is unresourced and has very few skills and the other system is resourced. Exactly as Mary was saying, it's not an equal choice.
And it's it's not what we heard what we've heard consistently over the last few days and I know I tweeted because I know one of the mothers this morning said the exact words, "It was presented to me as a choice but it didn't feel like a choice." And so that's the thing. It's presented as though it's choice and it's presented one of the arguments for segregated education is, "We must preserve parent choice", but families say over and over and over again it didn't feel like a choice. Didn't feel like a choice. We were pushed from this big system into this particular system because that was the only place we were made to feel welcome.
MS EASTMAN: Related to that is who influences choice and particularly choice at that initial stage of commencing formal education, which we've heard a lot about, from early childhood education or preschool or kindergarten into the formal system of primary school. What influences are made around choice? So it may be coming back to, as you describe it, who influences that sort of setting where parents feel that they haven't really got a choice but they're presented with something that feels like a
MS McALPINE: They're presented with something.
MS EASTMAN: Yes, it feels like
MS McALPINE: Yes, so we need to remember where families are at at that point. You know, they've got a four you know, you're starting to think about schools when you've got a three or four year old.
MS EASTMAN: Slow down.
MS McALPINE: A three or a four year old. Thank you. And often the way that a child is diagnosed with a disability, particularly an intellectual disability or autism or a cognitive disability, is what happens over time is they are missing milestones. So there's this gradual realisation, as the child is 18 months old or two years old or whatever, that the child has a that the child might have a disability. The families move and then straightaway families move maybe into an early intervention framework, and they trust very much we have a high trust for good reason, we have high trust in health professionals and others in this country. But what happens is you move in, you're still going through some period of adjustment and grief. You haven't necessarily had the time to link into peer support or you've never heard of advocacy, like nothing like that ever happened.
MS EASTMAN: Can I pause you there. When you because we've heard about that sense of loss and grief. How are you using that expression?
MS McALPINE: The experience most commonly is described as a loss of the dreams that you might have had. So it's a gradual adjustment that the life you thought your child might live might be different and so that's and so there's a sense of grief there. There can be a sense of grief in terms of what it means for that child versus the opportunities for that child versus the opportunities for their siblings or whatever. I want to speak really strongly that it's don't want we wouldn't want to talk about grief as though families are walking around sad all the time. That's not how people feel.
MS EASTMAN: That's why I wanted to ask you. Just for a clarification.
MS McALPINE: People don't feel sad about the they don't feel sad about the child. They feel sad about what they know about community attitudes and how that might impact on the child. That's quite a different feeling, when you see your child being treated differently to other children. And that's something that families you know, your peer support and other environments where you might build resilience to that, you know, and have places to talk about that. But families, whatever it is, whatever word you describe it, it's a readjustment of expectations. It's a readjustment of how you think things might go. And the people that you trust are people like health workers and allied health and your speech pathologist and what have you. And these people all play or the kinder teacher that we heard today.
So at that point in time, what we're hearing consistently is that people have great trust in our systems, which you hope they do, but those systems are not disability expert systems. Like, a speech pathologist doesn't know, for example, that that three in Queensland, we know that three per cent of children who go to a segregated school end up in open employment, or that in Victoria, the evidence shows that nine per cent of children in segregated schools end up in open employment. So they have no way like, the people that they get the advice from, the kinder teachers or the speech pathologists or the people who are in their life that they trust that know about these things don't know that if you go into a segregated setting, that that's the beginning behalf we call the polished pathway. And we call it the polished pathways because the system reduce all the barriers to segregation and yet your experience of inclusion is very difficult.
So you heard today how, for Isabella, once she got into special school, some of the barriers fell away, whereas Julie perhaps talked about how the barriers were still there. So, you know, and Isabella talked about not having anyone to support the transition or relying on the kinder teacher to support the transition. So what you end up doing is relying completely on the attitude of a person that you trust and not on the evidence that might exist.
MS EASTMAN: Ms Sayers, just turning to you in terms of influencing choice, do you agree with Ms McAlpine in terms of who may be the influences, particularly at that very early and initial stage where a child might have only received a diagnosis or, in some senses, is diagnosed in the process of starting school. Who influences those choices then as to what the educational setting might be?
MS SAYERS: Thank you. And we know early childhood is a critical sliding door period for helping decide where you'll send your child to school. We're in the middle of completing a survey, an early childhood survey. We've done annual education surveys of school education, but this is the first time we've done an early childhood survey. And, to date, we've had 163 responses. And some of that preliminary data is quite telling in terms of these sliding door moments.
So in early childhood education, from the respondents that we've heard from so far, 19 per cent have been refused enrolment. 31 per cent had been excluded from events. 19 per cent had experienced restrictive practices and remember we're talking about early childhood education here. 26 per cent had been offered less hours than other children. And 35 per cent had made a complaint. And the majority, 62 per cent, were not satisfied with the outcome of the complaint.
Yet the overwhelming majority, that was 89 per cent, said it was important to very important that their child attends a mainstream school. And so respondents were also asked where they got their information about school options. And 50 per cent said either online or their own research from events or professionals or attending open days at school. And 40 per cent said medical specialists or child development professionals, family friends or early childhood educational staff. So there's a lot of influences, I think it's important to say.
So while this data is still preliminary and we will provide this as a submission full submission to the Royal Commission choice is already being constrained in the early childhood period, and those pathways for exclusion have begun. And so as we said given in our previous evidence in hearing 7, the gatekeeping and exclusion that families experience when they start school has often happened in the early childhood system. And so, again, it's not surprising that we face this coercive choice between segregation and and non inclusive mainstream education because I don't think we could say mainstream education is inclusive at this point in time in Australia, despite pockets of good practice.
So this exclusion has already happened. The influences, as Catherine said, may be people who have no understanding of the evidence of what leads to good outcomes. So if we're thinking about change, we need to think about the broader community and societal change that's needed across health professionals, across the community, given many rely on families and friends for advice. So I think the key message is there are many influences of where children will go to school.
MS EASTMAN: You both might have touched on this, but for parents making these decisions, particularly for their children who are aged four or five, it is difficult to think about the long term implications of those choices or decisions. And I think you've both touched on that. Ms McAlpine, you've talked about the polished pathway in understanding sort of what might be the outcomes or the pathways from the different settings. Why should parents be thinking about the implications of choices at age four and five as to the future? I mean, the parents might go, "I'd like my child to be like Dr Ben Gauntlett and be a Rhodes scholar and reach those achievements." Is that what sort of you mean about the implication of choices?
MS McALPINE: Yes, absolutely. If you listen to the families, they nearly almost universally say, "I wanted things, I wanted independence, I wanted jobs." You know, that's what everyone says. And nearly everyone says they wanted to go to their local school to start with. But what happens is that, in Australia, we regard education outcomes as a proxy for life outcomes. So it's gently accepted and it's generally true if you get do well at school, then or if you choose a school that prepares you academically or whatever, then that prepares you for a more successful or a more independent life. For people with an intellectual disability in particular, the academic outcomes from special schools and mainstream schools are not massive.
They're a little bit higher in mainstream schools, but because special schools are well resourced the academic outcomes for literacy and numeracy are sort of a bit like this. So what parents don't know, that if you look at the life outcomes, that life outcomes are extraordinarily different. I mentioned to you about the three per cent and the nine per cent, but, in fact, it's a really significant veering away from what you think and you don't realise when you're in the middle that that's happening. So families realise later
CHAIR: Can I ask you a question about that?
MS McALPINE: Yes, absolutely.
CHAIR: The reference to three per cent in Queensland and nine per cent in Victoria carries with it an implicit comparison. What's the comparison you're making?
MS McALPINE: Well, I would just say the general employment rates.
CHAIR: But isn't that a false comparison?
MS McALPINE: In what way?
CHAIR: If you're talking about three per cent or nine per cent of children with disability in special schools, compared with outcomes in mainstream schools, don't you have to make sure that you're dealing with the same cohort with the same characteristics?
MS McALPINE: Yes. Unfortunately, I don't have those stats to hand and they those the stats for young people with an intellectual disability going into open employment from mainstream school is still much lower than the general population, but it's up more around the 30 per cent mark or 40 you know
CHAIR: Well, it would be helpful if you could point us to the research that establishes that. Up to date, I haven't seen it, but if it's there, I would be very interested to see it.
MS McALPINE: We'd be very yes. We'd be very happy to do that. And the other thing I wanted to say is we you know, you keep hearing us talk about the polished pathway to segregation, but I really want to reinforce that segregation, particularly in adulthood, leads to violence, abuse and exploitation. You've heard it in all of your hearings how so many people in segregation we heard it even yesterday where someone who ended up in special school still has ended up with restrictive practice in terms of medical, you know, intervention. That we're not what we're not seeing in special schools ending up in better life outcomes. We are seeing people in integrated settings where there is violence, abuse, neglect and exploitation.
And it's not and I wouldn't even want to simplify this in terms of saying "just", but it's not just the psychological effects of being segregated. There are very, very, very serious implications and the other thing that we don't talk a lot about is segregation leads to poverty.
MS EASTMAN: Ms Sayers, I might ask you this question: the Royal Commission wants to take a human rights approach in its work. To take a human rights approach in assisting the framing of choice, how will that work? We know human rights is the language of shared values, it's person centred, it focuses on practical steps to achieve substantive equality, and a human rights approach holds duty holders accountable against agreed standards. If you were to apply a human rights approach to framing choice, what does that mean? And I'm not asking in that respect what is the relevant human right, but a rights based approach in looking at choice. Do you want to comment on that?
MS SAYERS: Absolutely. And I guess the current choice debate really focuses on now. So we're looking at current broken systems and not the future and where we want to be. And I guess what we're hoping is that we can imagine a future where, in 10 years' time, from birth or when developmental delay is first identified, that families are encouraged and supported to strive for inclusion in their local community and make early childhood education and care the first step towards an inclusive education alongside their nondisabled peers.
In 10 years' time we want you know, we don't need to separate students with disability into special schools or units because every school is inclusive and has universal design for learning. And we want students with disability not to be seen as a problem, and we've heard from Gi and from Britt about the othering that they have felt and that they're seen somehow as not normal and perceived as different. And young people in our work tell us all the time about the deeply seated ableism that comes from some of these attitudes.
And we want families of nondisabled children to understand that all students do better when there is full inclusion and that we have high expectations for all students and that all students can flourish with the right adjustments and supports. And that, obviously, students leave their school options with school education with options for education, employment, post school employment and, you know, if we if we think about human rights, that's, you know, what we need to think about, not the flawed systems that we currently have. So I think one of your witnesses this morning school about how long the DDA, the Disability Discrimination Act has been in place. Obviously, we've had this legislation in place for a long time, but it's still not realising the human right to inclusive education.
So going back to choices, inclusive education is not about mainstreaming. It's about transformation and we need to move beyond this view that some children are too complex or too disabled to be included alongside their nondisabled peers. So we're really between a rock and a hard place if you like in realising the human rights, because we have constrained choices, as we've talked around, coercive choices that aren't really a choice. So, you know, and we'll talk a little bit later about what we think needs to happen, but it's based on a cycle of misinformation based on outdated views but going through all of our systems from educators, from parents, from unions, from everyone in the whole ecosystem that we need to base education for students with disability on choice between a segregated education and mainstream education, which we know both systems are broken for students with disability.
MS EASTMAN: Commissioners, I want to move on to a topic that's related to this which is school placement and enrolment options, but if the Commission's got any questions on that specific topic of choice pushing us to these binary notions, I'd invite your questions for our panelists.
CHAIR: I'll ask Commissioner Galbally first whether she has any questions.
COMMISSIONER GALBALLY: Look, thank you both very much. Look, I'd like to ask, you know, here we are with coercive choice, as you coined it. You know, why haven't governments you know, recognising that every school system is funded by the government, by governments, you know, Federal and State, why haven't they moved to make mainstream schools inclusive? Why is it not happening in Australia? Is it because there is a dual system or you know, that's the implication Julie made this morning?
MS McALPINE: I think so. I think, yes, it's the resources. There's sort of a finite bucket of money for education, and the skills and resources are put into the segregated system, and so that's regarded as the system that's available. But it's also we're not putting back to the human rights approach, we're not putting students at the centre. We're not saying what is the best system to suit everyone. What we're saying is we have these systems, then we have to argue about the systems or changing the systems. So we're putting the systems at the centre and not the people with disability at the centre. And I think the understanding of disability has just come such a long way in the last 30 years.
You know, deinstitutionalisation only happened in the mid 1970s that's more than 30 years now. But, you know, deinstitutionalisation happened in the 1970s. We are still early childhood early intervention and mainstream education only really came in even for more students in the mid 1980s. So we're just at the end of our first tranche of learning now. So, you know, really we don't have to just stick to the existing systems and say how can we adapt them. We can turn our mind to the vision that Julie had about what does true inclusion mean. I know in Western Australia, there's a few of what they're calling inclusion schools where they have been built with a built environment that's accessible and are trying more strategies.
They're fairly early days, I believe, but when we consulted with our Western Australian member, Developmental Disability Western Australia, they said it's just a postcode lottery now, because if you live in a place that's got an inclusion school, you've got an opportunity. But at the same time, the State government is still investing in special schools. So, Mary, you might have more to offer on that one.
MS SAYERS: Thanks very much, Commissioner Galbally. And we've recently done a piece of research that was funded through philanthropy about community attitudes to inclusive education and phasing out segregation. And, universally, people see education through this prism of choice. And that was from educators, from parents, from unions, from ex Ministers who were interviewed. And so this prism of choice is completely, you know, gone through the system, that we must give parents a choice. But as we've said before, this choice is not between two great local primary schools that both offer inclusive education. And so we need to move beyond this notion that parents have all the information, and actually base it in child rights, as Catherine said.
How do we know that we've got students with their own agency and voice? And we've heard a lot about communication for students themselves. We need to have young people like Gi and Britt that you've heard from leading the future based on their rights, not the notion that we're choosing between this binary option.
COMMISSIONER GALBALLY: Thank you.
CHAIR: Commissioner Mason?
COMMISSIONER MASON: We heard from two witnesses this morning, and they often talked about critical times in the timing of moving from, whether it was schools or year levels, and the information that was being provided for them. And for all of the witnesses, the lived experiences witnesses we've heard from this week, the first story seems to be the most important at the beginning of the child's school choices. And I'm interested in this research that you've been talking about, Mary, around early childhood. And another word that seems to be coming up this week as well in parents being able to think about the decisions for their children, many talk about that choice being a local school. We've heard that this week as well, is that it should be more multidisciplinary.
And so I'm interested in this idea of the research and what people are saying, but also what seems to be excluded away from the quantitative information that parents are thinking about for their child. Right at that beginning stage of thinking about where their child should be attending school, kindergarten, that really early stage. So I know we'll probably talk more about it this afternoon but I have a saying, to be fully informed is to be fully aware. So we might keep talking about that. That's just that seems to be a reflection at the moment around an awareness, awareness, comprehension, having the conviction then to make better action, better decisions. So I might hand back to the Chair on that.
CHAIR: Can I ask a question about this concept of coercive choice. As I understand what you're saying, Ms Sayers, you accept that the mainstream school system is profoundly imperfect from the point of view of inclusive education. You also say that, in your language, segregated schools are profoundly imperfect from a perspective of inclusive education. So the choices that face parents and parents make choices in practice for children with disability and children without disability. The choices are between two profoundly imperfect systems. Why is that a coercive choice, as distinct from a choice between two systems, each of which has little relationship to the system you want to see introduced?
MS SAYERS: The coercion comes from the exclusion you face in the mainstream system, remembering that education in local schools should be for everyone. So the coercion comes by the micro exclusions and the macro exclusions. So the macro exclusions are, "Look, we don't have the resources here at the school" or "You'd be better off going to the special school up the road." And the micro exclusions are when you're made to feel as though your child is somewhat flawed, that your child is less than, and that they're not welcome in their local school.
And so when you combine those macro and micro exclusions, then to move to be told the only option for you to get supported is in a special school, that's the coercion, and that's the coercive choice that you made. And our research from early childhood says the overwhelming majority of families want their children to go to their local mainstream school. So the coercion comes from attitudes. It comes from you know, I've experienced with my own child, through his education. You're so proud of your own child, yet you have all these people telling you that your child is not welcome. And the pain that you experience because of those attitudes and we've heard it today is profound and is questions your role as a parent and whether you've done something wrong and the blaming that happens, particularly when there's behaviours of concern.
You know, I got a call from a mum this week who whose four year old has been excluded from kindergarten and was told that this child is the most manipulative four year old that they've ever seen. Like, a four year old is not manipulative. They haven't even learned the skills of how to be manipulative. So these attitudes that other and they are coercive. So, yes, I agree that both systems are flawed, but the point is education in mainstream education should be for all and it's not for all. And the coercion comes because you can't be included in your local school.
CHAIR: So does it follow that as of now, 2022, any parent that chooses a special school for, let us say, a child with extremely high needs, is not making a free choice?
MS McALPINE: Very rarely. Can I just reflect on one other thing. We've talked a lot of how the systems aren't working, and we've talked about how both systems are flawed. The thing is that in the mainstream system, there are, as Mary referred to really early on, pockets of good practice. So one of the unique experiences of my life is my son went to a special school to start with, and then I saw all of the data and so we moved him out of special school. And when I went to our local primary school that my other two children were at, I said to the principal, I said to them, I said, "Can we have a meeting" or whatever, and she said, "What do you want to talk about?"
We said we want to talk about my son with intellectual disability going to school. She said, "Well," she said, "I was thinking you were never going to ask, I was wondering what was wrong with us." So I knew from that moment it would be okay. So we didn't get that experience. So I you know, I'm not here to tell you my personal experience, but I can tell you that we had an inclusive experience. It is possible. It wasn't easy and secondary school was harder, but it is possible. So the thing is that when inclusion is done properly and I know lots and I actually am lucky enough to know quite a lot of people, particularly in primary school, but who have had a really good experience where it has been done well.
So what we're trying to say also is that it's possible, when you have a good when your leadership has a good attitude and where other where they listen to the particularly the small adjustments, and that thing that we talked about, attitude, when that happens, it is possible. So, again, that sounds binary between a flawed, you know, mainstream system and a but the thing is that there are the thing is that we see good outcomes in open in mainstream education. What we don't see is very good outcomes, life outcomes for people in when they've been in special schools, particularly because of the pathway you've even heard it today about the providers coming in and talking about ADEs and offering work experience at ADEs. Like, we continue to hear that. But it's the pathway to that segregated life.
So it is possible. And the problem is it's not happening universally. That is the problem. And it is hard for schools to do in certain circumstances and with people with high support needs to get enough resources to be able to do well.
MS EASTMAN: And we're going to talk about partnerships between schools, parents and models of collaboration and consultation. We've partly touched on this. The second topic is school placement practices and enrolment options, and you've both referred to gatekeeping and attitudes. But one issue which you've both identified is if parents know that the enrolment, as you say, is not on the line, that can make a very big difference. So, Ms McAlpine, I think this is an expression you've used and it may echo the comments that you've just made why is it important for parents to know that the enrolment is not on the line when they're starting to work through what is the educational options for their children?
MS McALPINE: If the enrolment is not on the line and so the school doesn't so if you think about that story this morning where after the young child had been at school for six weeks and then there's a couple of problems have come up and the school started talking about special school straightaway. Now, that's not necessarily being expelled, but it's starting to feel like enrolment's on the line. "We can't support you."
If enrolment's not on the line, then the school doesn't consider that as one of the fixes and so, therefore, the only other thing to do is to address the problem. So then you get some more innovative addressing of the problem and you get the, "No, we are you are welcome at the school. This thing is happening. What is the best way to do it."
So in my case, my son when he was in year seven started going around into areas that were out of bounds, and that was regarded as a and he was exploring the school and he was also new, and there was a whole lot of you know, there was a lot of mixture of things going on. And that change, change is disruptive to all people, all people, not even young people, but disruptive change is disruptive. And when you have an intellectual disability, you've heard often routine is helpful in terms of helping you maintain independence. So the interruption in the routine is significant and you need supports to do that.
Now, what the school did enrolment was never on the line and so they what they did is, "What do we do?" And we went, "My son has Down syndrome." We went to Down Syndrome Victoria. They had a education support service which supports people in mainstream schooling. We said, "What are the strategies?" They said, "One of the things you can do is put a little stop signal in some of the doors and you get the young person themselves to work out where the boundaries are and where those stop signals could go." And so these little hands up went into the because he used to go into the library and flick the lights on and off. That was fairly annoying.
And so he put those little things up and the problem went away. Like, it went away almost overnight because we spoke to an organisation that had skills and expertise and we had an attitude from the school that said this is achievable. So instead of enrolment being on the line and going, "Oh my God, it's not safe and he should go", which is sort of what I heard this morning, that within six weeks it was already, "Oh, the special school needs to take you." Actually, if you went let's not think about that and figure out the problem and bring in an expert, it's amazing what can happen.
MS EASTMAN: Ms Sayers, can I take you to the topic of communication, and that is related to this, the provision of an access to Allied Health professionals and the use of alternative communication and augmentative communication. So we've heard from witnesses about the importance of supporting children in primary school, in particular, in developing communication in whatever form works for those kids. And, Ms McAlpine, in your submission to the Royal Commission in October 2020, you included some findings from research about the importance of communication, particularly at an early stage, and this communication is supporting the child to communicate but also having effective communication across the system.
So, Ms Sayers, can I ask you and can we open up the discussion on communication and the importance of communication to childhood development, decision making and developing independence and choice.
MS SAYERS: Thank you. The challenge is currently the pace at which communications in schools happens. It does not support children with disability who use alternative methods. So the communication is fast, if you like. And children need to be given time to communicate and space to have their voices heard. And this involves a reasonable time to respond to using communication tools that's most effective for them.
And so this pace in schools is challenging not just the students with disability, but there's a whole range of children with different intersectional concerns that means it's kind of one way or the highway in terms of communication. Excuse me. Sorry. And so rather than pigeonholing children very early that they can only communicate in one way, we need the process of adjustments to be ongoing, reinforcing and supporting alternative communication methods. And that example Catherine gave was a perfect one, because not all communication is verbal, yet our schools are set up for verbal communication.
So how do we build into our schools alternative methods for communications that mean we can bring everyone along? And sometimes they're the most minor adjustments that are needed to make sure you're bringing everyone along and, you know, also checking in whether children are understanding, whether they're you know, it's a normal developmental process, communication, but how do we think about this normal developmental process for children who may be nonverbal and not just write them off as being unable to learn?
So we do need a whole school approach to enhance communication. And communication is so key to the curriculum. And we do need and kind of going back to a point that Commissioner Sackville made in terms of this coercive choice, we're not saying that schools and mainstream schools with the right supports and the right non specialist staff specialist staff and educators who actually understand alternative communication, if we had those things readily available for every school, then we wouldn't be having these coercive types of choices.
And so we need to make sure that schools have those wraparound supports, that they can call in the experts. Because no one expects a teacher to know everything about adjustments. You know, that doesn't not everyone is an expert in everything. But how do we bring the experts and the team around the child to make sure that we've got, you know, the specialists, the NDIS providers who are working with that child, in that team around the child to make sure the communication is really done well, and that we're not relying on verbal communication as a key to success. And there are many children who will benefit from this, not just children with disabilities.
MS EASTMAN: I think I've raised this with you. It's not the specific question, but I have talked to both of you about this because we've heard evidence that for children who are hearing impaired and deaf, that being able to be educated in Auslan and in what you identify as your own language is important. And so we heard this from Catherine Dunn, who gave some evidence at Public hearing 17, and it might be sort of suggested against this communication, well, what about Deaf schools? Are you advocating that there be no more Deaf schools? So I'm going to throw that to both of you because I suspect there are people following this who will say when we talk about communication, the option for deaf and hearing impaired students to be able to educate be educated in their language of choice.
MS McALPINE: Yes, I on the one hand, that one is difficult and I don't think it's for me to override the wishes of the Deaf community, but I was actually just reflecting on about universal design for communication and so one of the things one of the debates that was raging when my son was very small was that whether or not teaching children key word signing actually helped develop speech or impaired speech. And there was one school of thought that said if you taught children how to sign, that that impaired their communication and language development, and then the evidence clearly showed that, actually, teaching children to sign increased their development.
And so I would actually argue that the answer to that is that every school should learn Auslan, in that key word signing in particular is very helpful for a range of children. We learned key word signing when my son was very young, and I didn't even know I could swear to you that I never taught my younger son how to sign, and he started signing to me when he was four months old and I hadn't even noticed that I was signing to him. And I'm only talking about some key things. There were five or six signs we used a lot when the children were small. I have to tell any parent that finished, we're going, with you can sign it over to the other side of the room. You don't have to yell at them. We're off. It's very handy.
But, actually this is a very personal point of view, but I think all schools should do Auslan and I think all schools should their local Aboriginal language. Like, I think it's a no brainer, but that's probably not what we're talking about today. But there are ways to approach there are ways to approach that. You know, it would be very different if we actually acknowledged that, in terms of the overall language in Australia, that we have two languages. We have English and we have Auslan that are universal, and then we have local languages that we should learn and respect also.
MS EASTMAN: Ms Sayers, I think I've raised this with you as well, and I thought this was the right time to ask you about this in the context of communication.
MS SAYERS: I think it thinking about and, again, I don't have the authority to speak on behalf of the Deaf community, but language is culture and for the Auslan for the Deaf community, Auslan is both culture and communication and community. So I would really encourage the Royal Commission to really do a deep dive on this, because we do need to make sure that this culture and language of the Deaf community is really thought of carefully, in a way to move forward. Because, you know, we don't want to deny Deaf children to the right to their culture and community, and we do that if we place them in a mainstream school that doesn't have the whole school approach to communication.
So, again, we would argue, it's just one reasonable adjustment that needs to be provided and if a Deaf child comes to a local school, the reasonable adjustment is that they're taught in Auslan. And it's not just about having an interpreter in the room as well. It's around the language and the culture of Auslan. So it is it is an adjustment that, unfortunately, is not made widely for the Deaf community.
MS EASTMAN: Right. While I'm on the issue of communication, what came through very strongly in Britt and Gi's evidence this week is the importance of children and young people being heard. And so communication in education is a tool to supporting the voice of children and young people in education policy and planning. In your respective experiences, is there a voice for children and young people in education policy and planning? This might be a short answer? Who wants to go first?
MS SAYERS: I'm happy to go first. In answer to that, no, we don't have the systems and processes in place to enshrine student with disability voice at the school level, at the regional level or at the state and territory or the national level. And so if we think about some of our great movements that we've had in this country, we've moved to marriage equality, we've moved to a whole range of equity, hopefully we'll have a First Nations Voice enshrined in parliament in this term of government.
We haven't got a movement of students who are calling for change, and part of this is because we don't have the enabling processes to hear their voice. And obviously CYDA, through our National Youth Disability Summits and through our Young Leaders Programs, you know, are working very hard to ensure young people can lead and be at the front, and both Gi and Britt have been involved in our work, but that's not systemic. And we need every jurisdiction to think about, do they have at a school level? We sometimes in Victoria have student representative councils. How many students with disability are on those student representative councils?
How do we have, at a regional level, student voice so that we can be more proactive rather than reactive and all the changes are embedded in young people's experiences, and I think that's a real easy recommendation the Royal Commission could make, is putting it on state and territory education jurisdictions that they need to develop processes to hear students, but not just hearing from students who are verbal but also hearing from students with complex communication. And when we hear their voices, you know, it's shameful what we're doing to children in this country. You know, it is a great national shame, the way students with disability are teaching. What are we telling these children and young people about how they're valued in society by punishing them so much in their education?
MS EASTMAN: Ms McAlpine, if you agree the answer to that question is no, then how can the voice of children and young people be incorporated into decision making around education policy and planning, and at what stage should their input be sought?
MS McALPINE: Yeah, there's a few answers there. I would agree with what Mary said in terms of the way that sort of more formal representation structures could be developed. I would also say that, at an individual level, one of the things it's been touched on but for the children with complex support needs, particularly complex communication support needs, we need to remember that behaviour is communication. You know, and we what we've heard, we've heard a few stories of children's behaviour escalating at a mainstream school and then easing in a special school and a lot of that's got to do with attitudes is that behaviour is communication and we're not listening.
So what happens is a child misbehaves or does something that's unacceptable, you know, generally and instead of saying why and what are they telling us, we just try and control the behaviour. So they're not getting listened to at an individual level either.
MS EASTMAN: Can I ask you about that. Schools might say that's all well and good, but in a class of 28 students, and we have a situation on our hands, there's disruption in the class, and we have to respond to the immediate behaviours how do you do that?
MS McALPINE: Well, I'll speak ideally. Ideally, you don't end up with a child who's perfectly behaved and then throwing things or being violent the next day. It happens gradually over time. So if the small things were addressed, we wouldn't get to the big things. So if children are supported and get the supports that they need when they're much younger, and then you can find then you can find out sorry, I had an example in my head and it's gone straight out.
MS EASTMAN: I don't know if you heard Ed Croft's evidence yesterday about Ed seeing as a teacher the challenge but also seeing through his own son these behaviours. And we've got the records and we've looked at each time Ryan was in his protective isolation as to what the reason for that was, and you can see that build up. We didn't go into that in detail yesterday, but I'm just trying to capture, from a practical perspective, what do schools actually do? And Ed was trying to say how do I look at it from both sides.
MS McALPINE: Again, I'm going to I didn't hear all the evidence yesterday, so I will use a Down syndrome example because it's one that I'm familiar with. But, again, because Down Syndrome Victoria, which the state in which I live, had an education support service, they had effectively a visiting teacher service, what would happen is some behaviour would some behaviour might develop and some so they would get the visiting teacher out and then they would say, "What do we think Is happening and how we could avoid it" and one of the things he made them do, this visiting teacher, would say, "You need to record it." And so they would record how often the behaviour was happening, for a relatively short period of time well, when I say a few days.
So you would record it over a few days, and you would record the antecedents and precedents, so what happened before and after with this behaviour. Then they would try an intervention and they would do that and then he would get them to measure it. And he said what was consistent is that after a few days of trying, he'd come in and they'd go, "It's not working." And he would say, "Give us your sheets of paper where you're doing your one, two, three, four, fives." And they'd get it back, and he said, "It happened 44 times last week. It's happened 28 times this week. It's working. You just need to persevere a bit longer." And so at the very moment the school was prepared to give up, he'd go, "Persevere." And so they'd persevere for another couple of weeks and then it would come down to twice a week or whatever, you know, to an acceptable level.
So there are and that if you have someone experienced that you can call on, which has been suggested, (a) suggesting with it and (b) persevering so not going, "This is not working" because the behaviour hasn't vanished, but if the behaviour has decreased, that means it's working. So there's a whole lot of there's just what I hear people with disability I was in a conference yesterday and a person with disability made this fantastic speech about how great problem solving how great people with disability are at problem solving. The thing about special schools and the thing about the disability services sector is that they've really thought about solutions. There are a whole lot of things that work, but the mainstream systems don't work.
And I can't tell you at a personal level how many strategies we've learnt from the disability sector that we've just introduced into our family that just helped. And so this is why when we get to what should we do at the end, and we're saying, well, basically all that skill and resource needs to move over to there, it's because, in fact, there are a surprising number of solutions and some of the reason that you find that some of the things improve in special school is because they have the skills and expertise to do it, but those skills and expertise don't sit over there.
So it is absolutely possible and we see it, and we see it working. And it does start in primary school in the same way that those isolation boxes for kids and what have you, the way that people experience young students experience restrictive practice early, that is how you end up with the people with very high support needs as adults and with a million particular NDIS plan. Like, that's the trajectory. And so it's really important that we get it right at school.
MS EASTMAN: Commissioners, one, I'm looking at the time and I think we thought we might have a break after about an hour, but before we do that, if the Commissioners have got any questions around the topics? I know in that context of communication, we've covered quite a lot of topics. Commissioner Mason.
COMMISSIONER MASON: Yes. I have got a question, Ms Eastman. In Isabella's evidence, she mentioned disability support workers supporting her through the process as well as her son. So there are these workers in the system. So what more needs to be done or what's missing? Because they seem to be the advocates in the those in the system with the knowledge to be advocates and to provide that information. What seems to be missing? What more needs to happen?
MS McALPINE: Yeah, the a couple of different things there. Firstly, it is actually really important that some specialist supports so either behaviour supports, practitioners, or speech therapists or whatever, that we do end up we'll probably be talking about this in terms of the way that NDIS funded supports and school supports or what supports the school system should be providing can work together. So that's one thing. In terms of advocates, what happens what tends couple of things. Firstly, in when children are young children with disability are young, the support they get is from highly educated people, so Allied Health support workers, speech pathologists, behaviour you know, that. When you move into adulthood, actually you move into a case where support workers tend to be lower educated people, more poorly paid.
So when we talk about support workers in this setting, I think we need to really be clear: Are we talking about sort of the expert practitioners or are we talking about support workers or teacher aides or whatever who are less, knowledgeable sometimes, about the interventions? There's a separate thing around advocacy and independent information. We would still say that it's not always those practitioners that have the independent information. So we'd sort of need to separate that out a little bit. But there is certainly a role to talk about in terms of how the different supports could work together, putting the child at the centre, and there's also something to be talked about about independent information and where that might come from and where people get the information they need to make decisions.
MS EASTMAN: Ms Sayers, did you have anything to you wanted to add to in response to Commissioner Mason's question?
MS SAYERS: Absolutely. And I think as Catherine said, differentiating between are we talking about a teacher's aide who's there to support the education of the child or are we talking about a support worker who's supporting the disability? Because I think we have in our system some very fragmented processes. So a teacher's aide, for example, can be just supporting one child, and what the impact of that can be is it can be very othering, that, you know, this child in a mainstream class has one person and we've heard stories of, you know, people running away from their teacher's aide at lunchtime because they don't want to be near they just want to be seen as a as a normal student, if you like.
And so when we're thinking about what sort of teams we need around students with disability, we need to sort of differentiate between what's going to give the best educational outcome. So there was some good evidence provided at hearing 2 about team teaching, where it's kind of a whole class approach to educators. And then there's support for the disability which may be for toileting and other types of support. And at the moment what we've got is a bit of everything but nothing really working together. And so we have some good practice and then some, you know, exclusionary practice and the very process of having a teacher's aide can actually make a student feel even more isolated and more different than their peers.
So we've got a lot of work to do about thinking what the best models are to make sure the and students just want to be like everyone else. They just want to be like their peers, and the more we do to other them, the harder we're making their journey because the social and emotional connection that students want to have with each other is often disrupted by the professionals who are trying to help them.
COMMISISONER MASON: Thank you.
MS EASTMAN: Chair.
MS McALPINE: There's a school of thought in intellectual disability and there's some research papers on this that say that once the particularly in primary school, but once the teacher's done the, you know, the chalk and talk at the beginning of whatever they're talking about, there's actually some evidence that says that the aide should actually help the most able children in the class in terms of just keeping an eye on them, who are able to self direct in their work, and then the teachers should be actually looking after the people with the highest education support needs.
CHAIR: I'll just ask Commissioner Galbally if you have any questions at this stage, and then shall we just take the adjournment?
MS EASTMAN: Yes. So we're just focusing on communication and then we've got a number of topics to move on to after a short break.
CHAIR: Commissioner Galbally, do you have any questions on communication?
COMMISSIONER GALBALLY: Yes, the only question is that if I've understood you correctly, for communication technology and Auslan, you'd say there's two approaches. One's a universal approach that should be in every school, that that should be available and really, you know, there in every school, and then there's reasonable adjustment for individual students, but it's a combination of the two, but that every school needs to have universal access to communications technology and Auslan. And I presume you're suggesting that all the students should learn Auslan too, which could be really great in Australia. Is that what you I think it was you, Catherine.
MS McALPINE: I did mention Auslan, and I have to say that that's a personal opinion, not necessarily well considered in sorry, consulted in the community in our community, but I absolutely I think a universal approach to a whole lot of augmentative like, sign in general helps communication and so a universal approach to that, and then certainly an individualised approach from then. It's my personal opinion that Auslan could be more broadly taught and certainly we hear of pockets of good practice where a capital D you know, a child from the Deaf community is in school, that they that schools have chosen for everyone to learn Auslan and that's gone incredibly well.
MS EASTMAN: Thank you.
CHAIR: Just putting the stimulating idea of teaching Auslan to all Australian students to one side just for the moment, I'd like to understand what the universal approach actually means. Does that mean that if there is a deaf child in the class, then there must be for that child an Auslan interpreter?
MS McALPINE: There's a variety of supports that children might use. So if we're talking particularly about people who are hard of hearing, that you know, it might be that the teacher wears a particular gadget that feeds straight into hearing aids. Or it might be that they have some other system in the classroom. So when I think the two things are there are some things that are universally helpful and I'm particularly talking about primary school, by the way, where often a second language is taught in the modern era. But the an understanding that a variety of supports might be needed and some of those are technological, and the universal design is that key word signing is helpful to everyone. Like, a lot of people find them really find augmentative sign really helpful. And then there's particular supports for those students. And the particular supports might be an Auslan interpreter or might be another type of intervention or support which might be technologically or tech based.
CHAIR: For students who communicate using Auslan, presumably, they need to be taught Auslan?
MS McALPINE: The young people who are deaf?
CHAIR: Yes.
MS McALPINE: Yes.
CHAIR: And on the approach that you're putting forward, how does that teaching take place? Is that something that is done at home or is it done at school and, if so, how?
MS McALPINE: My understanding is both. Again, children learn their primary language at home in their infancy and so certainly families that use Auslan are teaching Auslan to children in infancy. Where the complication comes is when a deaf child is born to hearing parents and then that's not necessarily supported so much from youth. And some of that, I think, is real NDIS discussion, because that happens in a pre-school environment, what happens when is a child is, you know, one, two, three four years old. But, certainly, the explicit teaching of Auslan is often something that's needed. And this goes to an NDIS argument, but there are problems where families can access Auslan teaching for the child but can't access Auslan teaching for the family. So that's a whole other problem where it would be argued that, for a child to learn Auslan properly in a hearing family, that they are
CHAIR: They have to learn.
MS McALPINE: But, again, I feel I know this because I've been lucky to have a very warm relationship with Deaf Australia over the years, but I would strongly encourage that conversation to happen with Deaf Australia and not necessarily with us.
CHAIR: Shall we. It's now 3.16 more or less. Shall we resume at 3.30?
MS EASTMAN: Yes.
CHAIR: Thank you. We'll just adjourn until 3.30.
ADJOURNED 3.14 PM
RESUMED 3.33 PM
CHAIR: Yes, Ms Eastman.
MS EASTMAN: I'm going to move the questions around a little bit, and we're going to start on the post school transition. Then we'll talk about the NDIS and education. And when we come to the final topic, which is a vision for the future, and this is where we're going to get practical of what needs to be done, we'll deal with the partnership between schools and parents, collaboration and consultation at that stage.
All right. So on this issue of a post school transition planning, we've heard witnesses talk about the importance of supporting children and young people in transitions from high school, either to further education, employment or, as you may have heard me say this week, about exploring the world. And this is an issue which the Royal Commission has heard evidence about at Public hearing 9, and also more recently at Public hearing 22, and, Ms McAlpine, you've talked about this as part of the ‘polished pathway’.
So can I open up to both of you, what is the role of schools in supporting students with disability in the transition from school? It might be said sort of once school's done its work, you've got that graduation, it's all over and you're then on your own. Do schools have a role in supporting students with disability transition from school? And maybe I'll start with Ms Sayers.
MS SAYERS: Thank you for that question. And I think in answer to your first question, do schools have a role, absolutely. They have a role for all students, not just students with disability. And the evidence tells us that that post school transition planning should start in about year 9, and that needs to look like things like individual career counselling and advice, opportunities to participate in career related activities such as information sessions, assistance with planning further study or training university, TAFE, traineeships or apprenticeships and assistance in understanding their strengths for their what they're looking for in their post school transition, assistance with work experience and seeking work experience and then practical experience such as résumé writing, assisting with job applications and the like.
And so we did a survey back in 2019, which we have provided as evidence previously in a submission to the Royal Commission, that very few of these activities happen for students with disability. And so we know that this post school transition period is a time of real risk for students with disability because often it's absolutely behest by low expectations about what the future holds. But certainly young people that we work with tell us about the high expectations they have for themselves and their futures. But this is a period that's often neglected for students with disability.
And we would argue that those limitations are even further further constrained in segregated education, which I know Catherine will be able to talk some more about. But, yes, schools do have a role for all students. The Senior Secondary Review Pathways that was done by the Australian Government had a specific recommendation around students with disability and their post school transition, and, to my knowledge, nothing has been done in that space - from what I can see from our research - to really boost the role of how schools support that post school transition.
MS EASTMAN: And, Ms McAlpine, you've given evidence at Public hearing 9 when we were looking specifically at the experiences of people with disability in finding their pathway through to open employment, and we touched at Public hearing 9 on that issue, but what's your view about the role of schools supporting students with disability to transition from school, be it to employment but also to other options, including higher education?
MS McALPINE: So it's I completely agree with Mary that it's the role of the school to do a lot of that work, and completely agree with Mary that post school transitioning should be starting in about year 9, because a lot of that goes to
MS EASTMAN: Slow down.
MS McALPINE: A lot of that goes to, you know, choosing subjects and other things that happen, particularly in the year 11 and 12 years, and you need to have thought about that before years 11 and 12. So, firstly, to talk about people in special schools, the school has a responsibility to make sure that they get a range of options in the year 10 work experience and also in other work experience and that that's not just an ADE. So that's not just assumed that the only thing that will happen will be an ADE in terms of employment or that the other providers come in and say "We're going to do transition planning" but, in fact, it's not really. It's just transitioning into day services or into other segregated services.
The question about additional supports, if people with an intellectual disability in particular, but also other cognitive disabilities, are to be supported in work experience, they are likely to need one on one support in year 10 for that one week that's mandated and for other work experience. These are resources that schools don't have, so schools should be involved in the planning, schools should be putting together the all of the information that needs to happen, schools should be organising all of the paperwork and things that go with work experience, but often the reason that work experience fails is because people can't get one to one support. And actually getting to and from the work experience like, they might have been travel trained or whatever in terms of getting to school but they you need to go somewhere else for work experience.
So finding mechanisms for the NDIS supports to be able to like, either having specific extra resources for work experience or that people are able to access those sorts of supports in their NDIS plan and use them is something to be considered, and that's particularly around work experience in year 10, and it's also about the fact that, for people with an intellectual disability, that who are less likely to have had a casual job or whatever, that learning about what am I interested in, what do I like and all the rest of it is best placed by learning on the job, so having a series of work experience experiences through years 10, 11, 12 can be very helpful.
MS EASTMAN: Commissioners, just before I turn to what the next topic is, and it's related to post school transition planning, which is the NDIS in education, do Commissioners have any questions on post school transition planning?.
CHAIR: I shall ask Commissioner Galbally first.
COMMISSIONER GALBALLY: I guess the only question I've got is that I would it's been it's come out over the last couple of days that ADEs and day programs do present to special schools and meet with students. Would that be in part because those places are funded? Is that partly a recruitment because of the funding?
MS McALPINE: When you say "those places", do you mean the services or the special schools?
COMMISSIONER GALBALLY: Well, when yes, you get a package, you get it in the package.
MS McALPINE: Yes, so, well, the people who are likely to be so a lot of the students at special schools are likely to be NDIS participants already, so they'll be a target they're a target to the people who are already the NDIS participant. And so providers have long established relationships with special schools, and they go in and make it very easy make it very easy for the families, they make it very easy for the special school. “It's alright. We'll do this. We'll take you out in a group. We'll do this thing.” We heard this morning about how fun it was to go to an ADE - without any explanation to the families, that means that these people might go on to jobs where they might only earn $2.50 an hour. It doesn't lead to great life outcomes. What does open employment mean? And so how can we do it not in a group and how can young people with intellectual disabilities who do have an NDIS package not be looked at as a commodity just to be, like, a sales effort to bring them into the system, and not what is it they want for their life and what supports do they need to achieve that.
COMMISSIONER GALBALLY: Thank you.
COMMISSIONER MASON: No, thank you.
CHAIR: Ms Eastman.
MS EASTMAN: Well, that leads into the relationship between the NDIS and education, and both of you have addressed in previous evidence and also submissions the challenges for children and young people who are NDIS participants with respect to achieving education goals in their plan, but also navigating supports to be able to attend school. So these areas which might be critical to getting to school and participating in school, transport, work experience, education related activities, in your experience and what you know from your members, are there gaps between the school supports or school's reasonable adjustments and the NDIS supports for children and young people who are NDIS participants? And the question I pose to you: if there is, then what needs to happen? So, Ms Sayers, perhaps I'll start with you.
MS SAYERS: Thank you very much. Based on the National Consistent Collection of Data, there's around about 20 per cent of Australian students who require some sort of adjustment in their education because of disability, and that's around 530,000 young people or students. However, only 146,000 are actually NDIS participants. So I think it's fair to say the majority of students with disability are not NDIS participants, and there's a number of challenges because of that.
The first is that in our 2019 education survey, we found that 57 per cent of families are paying out of pocket expenses for a range of supports or equipment that they've had to pay for personally, outside of their NDIS, to support access and to participate in education. So that's one injustice that many students who are not on NDIS, their parents have to pay for a whole lot of equipment and supports.
The other problems with the education interface between the NDIS is there's no overarching policy that the NDIA have and also through its funded early childhood and local area partners that will encourage participants to pursue an inclusive education and assistance to support inclusive education. If you like, it's a policy vacuum. There's also some perverse incentives for segregation through the NDIS, because education jurisdictions will often fund school transport to segregated settings, but they won't fund school transport if the NDIS won't fund school transport. So we've got this perverse incentive that if you go to a special school, you're going to get transport, but if you don't, you're going to get nothing because the NDIS won't pay for it.
And there's a real lack of clarity between what the NDIS will fund and what education will fund. And research has shown that many participants want more opportunities to utilise their plans for mainstream activities as well as peer led projects. And so at the end of the school year, it's particularly dire, so that post school transition period. We know young people with disability are one of the most disadvantaged cohorts in the labour market, yet the school leaver employment services has really no demonstratable outcomes as yet, although I think the NDIA would say they would, but it's compounded by the fact that Disability Employment Services overall are fragmented between what the NDIA provides, between what Disability Employment Services provide and what the sort of the Jobactive market.
So, if you like, we haven't had that policy discussion around how do we make sure NDIS participants get the support and navigate this really fragmented system, and I have to say the NDIA has been a really policy yeah, hasn't been strong policy, if you like, in terms of leadership for the policy. And the policy for NDIS sits within the Department of Social Services, and the NDIA is seen as a service delivery. And so we don't have the policy linked to the service provision.
And, finally, I guess I'd like to say is the Australian Government, the NDIS and education jurisdictions do not have a youth disability employment framework or practice framework. So, if you like, all parts of a system are not working well together, particularly in that post school transition period.
MS EASTMAN: Ms McAlpine, do you want to add to that or
MS McALPINE: Yes, there's a few things that we would say for people for students with an intellectual disability. So the first thing we would say is that education needs to, in the same way that Mary said needs to step up. So the sort of suggestions we would make is that, you know, that states establish a specialist team or branch in education departments to oversee curriculum implementation, resource production, professional development for teachers, family resources, and be responsible for the other state and territory responsibilities related to children students with an intellectual disability.
And those branches can those branches could become a site of expertise for the whole mainstream education system and champions of inclusion. So where, you know, you heard families talk about the lack of support from the education system in terms of what inclusion might look like, and those branches could do other things that really help the inclusion of people with intellectual disability, with disability, including and then there also would need to be some specialist expertise at the federal level, particularly when it comes to things like NAPLAN and NDIS and interfaces. We certainly believe there should be, you know, a specific meeting on each with Education Disability Ministers to sort that out.
In terms of in terms of the NDIS, we're very sympathetic to the NDIS in not letting other systems abrogate their responsibilities. So it's really important that Education takes its responsibilities. However, there are some areas that are gaps. I already talked about work experience in year 10, work getting to and from work experience in year 11, doing more transition planning, and the point that Mary made about policy in terms of the NDIS is that the NDIS develops an internal assessment of the risk of a person going into segregated work or activity settings and provides for information and support for them and their family about mainstream options. If an ADE is chosen, then a vocational review or a development process is completed before entering the ADE and annually afterwards.
MS EASTMAN: Commissioners, I'm going to move on to the final topic which is quite large, and
COMMISSIONER GALBALLY: Excuse me.
MS EASTMAN: Do you want to ask a question before I move on to the final topic? Yes.
COMMISSIONER GALBALLY: Yes. I just wanted to clarify what Catherine said then. Do you mean that's what they're doing or that's what you recommend?
MS McALPINE: That's what we recommend.
COMMISSIONER GALBALLY: Okay.
MS McALPINE: So what we're saying is the NDIS, for instance, does not have a policy position that says the NDIS the aim of the NDIS is social and economic inclusion. That's the aim of it. So, therefore, they should be looking at they should be looking to reduce segregation overall and so we're saying there actually should be some risk assessment of people leaving school, going into segregated settings and making sure supports are put around people, students and their families at that time to think about the options and the supports people need to have more inclusive lives.
MS EASTMAN: Part of addressing the topics that we've talked about today and listening to the evidence over the past few days is there is the aspiration of – as Julie spoke about this morning, about every child being able to attend their local school and that the experience for children and young people with disability is not framed in these choices. So I pose the question these questions to you: what does a future where every child can go to their local school look like, and what does the local school look like? How do we get there? And what needs to change to get there?
And I really wanted to sort of focus on some practical aspects of that. I think Commissioner Galbally might sort of frame this around pathways to change, pathways to inclusion. Now, I know that's going to pick up the partnership between schools, parents on collaboration and consultation, but we would appreciate your views on, practically, what needs to happen to achieve the change that you've all spoken about. So I might start with Ms Sayers, and then, again, I'm very happy for you to jump in together and cover the points as we go through that. And, Commissioners, that's the last topic that I'll address with the panelists and then it will be over to the Commissioners.
MS SAYERS: There's a few I've got quite a few points, so I might kind of pause midway and then give Catherine a chance and then come back again, because I think there's some things that need to be done now and there's things that need to be done to get to where we want to do.
So starting with now, I think the whole notion of principal autonomy and the lack of system accountability for these issues is a major problem, and we're constantly contacted by families with nowhere to complain when things go wrong. And there's this perception that regional offices of education jurisdictions will always back the school, and if there are investigations, family rarely know the outcomes or consequences for the poor behaviour that happens in schools. And there's an absolute lack of independent avenues for review and complaint resolution, which is a source of significant concern.
There's also a vast lack of independent disability advocacy. The main source of independent disability advocacy is the National Disability Advocacy Program. And there's only less than a handful of individual advocates that are specifically for children and young people. So, for example, we have the Youth Disability Advocacy Service in Victoria. For young people, we have the Association for Children with Disability. When we get a call, and if they're in Victoria, we go wow, phew, we know where to sends these families and they'll get some support. But they're overwhelmed as well. In some jurisdictions, like Western Australia, South Australia who I know you'll be talking to Northern Territory, there's no independent individual advocacy that can help families navigate some of these challenges when things go wrong. Most of the advocacy in these states is for adults, not
MS EASTMAN: We've just lost
MS SAYERS: specifically with expertise for children and young people. Can you hear me, sorry?
MS EASTMAN: Yes, no, you just froze for a moment there. You're back.
MS SAYERS: So in the short term we need support for students and families to resolve issues before they escalate at the local level; funded disability advocacy. We need a rapid response unit in within education to resolve issues and build the capacity of schools. We also need independent restrictive practitioners - practice adviser to prevent, you know, we really need to be on top of this now. These forms of abuses should not be happening right now. And we also need a student advocate within education departments, or expanding the powers of Commissioners for children and young people, so that they can conduct inquiries when things get so bad that it can't be resolved.
In terms of the long term, we've called for a national 10 year inclusive education plan that needs to be founded, I guess, on how we ensure students have agency and voice in their education system; how we can eliminate exclusionary and discriminatory practices like gatekeeping; how we can transform education and form a new consensus around this aspiration of a fully inclusive education system where schools have the funding, teachers have the training and support they need. And over the next 10 years, how can we phase out segregated education through things like grandfathering where we might say by a certain point in time all prep students are now going to be fully enrolled and supported. It's not about mainstreaming.
We also need legislative change. The Disability Discrimination Act and the Disability Standards for Education are clearly insufficient for ensuring rights of education. We need a human rights based inclusive Education Act. We also need data and transparency, such as a national minimum dataset for educational outcomes. There's no tracking of outcomes for students with disability that can really be used to track progress in improving outcomes. And finally, we need parent education and support. So families like me, families like the people you've heard about don't enter schools feeling like their children are othered, but assist them with advocacy and capacity building to support them through this journey. So thank you.
MS EASTMAN: That's a lot of topics. Thank you, Ms Sayers. Ms McAlpine, what would you like to add to those topics or speak to some of the topics and ideas Ms Sayers identified?
MS McALPINE: I want to go back to Julie's vision of that, you know, what does the future look like, what people going to go to their local schools. This is simplistic and we do need to go into the detail but in some ways pick up all of the skills and resources that are in special schools and put them in the other system so that the other system can be responsive. That is, that's a very simple answer but it is the answer. And so that means the things that we just talked about in terms of the education systems investing in the specialist expertise and the resources and having resources available for students, families and schools depending on, you know, which bit of assistive technology you need or what particular support you need.
People need access to peer based information, so that would be the work of that system. We need an ILC or tier two. Again, when we talk about a market, when we're talking about disability services, people need support for decision making and they need places where they can get independent information that's not provided just by providers. What we're seeing is information about post school in particular, it's been provided by the providers who have conflicts of interest who are trying to market services, and that's not obvious to the families or the students.
So independent information, more supported peer support, more evidence based information about long term results, and I would echo everything that Mary said but in particular access to advocacy and advocacy that is targeted at education settings. But advocacy is often around crisis. Like advocacy at the moment is so underfunded and under resourced that advocacy is actually not the place for independent information. It's a possible place for it but you have to actually have enough funding to be able to deal with the crisis and with the preventative work and at the moment the individual advocacy sector can't do that. So my first recommendation would be of course that it gets enough funding to do that, but also there are other places to get independent information which involves peer support and disability specific organisations and other places.
And I would go further than Mary when you're saying we should gradually talk about getting rid of things. We would say we could go straightaway by 2024 there would be - that all children in prep and grade 1 would go into mainstream schools and one of the reasons we say that is the research. We keep talking about attitudes. The research on attitudes is very clear. Attitudes change when people have actual contact with people with disability. One of the reasons that attitudes towards people with disability are so poor is that people don't know people with disability because they're over there in the special schools and it starts at age four.
And I've been involved in a couple of projects. We were involved with a project that was about physical helps for people with intellectual disability and I asked the research organisation, "Could you do an attitudes test while you're doing it?" because they were being supported by university students and they were like, "Oh, we didn't include that in our submission; we're not funded to do it." So they took an off the shelf attitude survey, gave it to all of the university students who were supporting the people with intellectual disability, gave them the baseline survey and then six weeks or eight weeks later, whatever it is, did the secondary survey in eight weeks.
She rang me up hyperventilating because the difference in attitudes in eight weeks of having contact with people were so different. "Oh, they're just the same as us. They want all the same things, somewhere to love, somewhere to live, be useful contributors to the world. So there's a chicken and the egg. If we're going to choose attitudes, we have to bring people together first. So that's why we would say let's get the kids all together and get the resources in place.
MS EASTMAN: Commissioners, over to you.
CHAIR: Thank you. Commissioner Mason, do you have any questions, and they may be related to any of the matters that have been discussed in the last couple of hours?
COMMISSIONER MASON: The thread for me so far this week is there seems to be pockets where people really have a deep knowledge of the Y, the yes case, but there also seems to be a perception that the no case for inclusive education is also there. And you just touched on this. What comes first? The attitudinal change or the contacts and the relationships? And are you saying that we've got to be doing these two things both at the same time because they both feed into each other in the long run because it's about our society and where our society is more inclusive?
MS McALPINE: Yeah, it's a couple of things. One is when you talk to individual families and I've been one of them and Mary's been one of them when you talk to individual families you're not aware of the systemic impact of what we're doing at the time that you're doing it. You only become aware much later and families look back and go, I wish I'd done things at different times or at or earlier or whatever. So what you have is the systems giving the systems are giving you opinions based on their beliefs in the system. And the families and people with disability are saying, "These systems aren't working for us."
And so yes, I think I think we need to work on the evidence. The evidence says that we're not getting good outcomes for people with disability, especially people with an intellectual disability, things have to change, and the question is what is the change and we would say some incremental change about bringing people together and then collect evidence along the way. Like, you don't have to make the universal change in one go. You couldn't possibly do it anyway, like it's not practical, so collect the evidence along the way.
COMMISSIONER MASON: It sounds like the critical touch point is when educators and parents are talking about and agreeing to next steps, and that there is a much more, a deeper informed decision making process with educators around the research, around what works, and parents hearing that and hearing the broader societal story when that child is young and what that future could be like, that sounds like that's a really critical point of time in the education system.
MS McALPINE: I would agree completely with what you heard, yes.
COMMISSIONER MASON: Okay. Thank you. Thank you, Chair.
CHAIR: Commissioner Galbally.
COMMISSIONER GALBALLY: I don't want to end on a difficult note but I'd like to come back to Ed Croft and Isabella who've felt that, you know, there were just no way that their children wouldn't be in special, and that there's the argument about high needs and they can't do it, they can't go into inclusive education. So I'd like to hear your comments on that.
MS SAYERS: I'm happy to answer that one, if you like, Commissioner. I think we would never be in a position where we would judge parents for the choices, even if they're choices that aren't based on because at the moment mainstream service systems and mainstream education is not where it needs to be. So it's hard to imagine that it's possible when you see what's not there. And so what we need to do is imagine what is possible if we have the right supports. And as we heard in hearing 1 from Thuringowa High School in Queensland, it is absolutely possible but we need more than lighthouse schools. We need it to be embedded across the system.
And until we have that, it's going to be hard for parents to believe that it's possible when we don't have enough examples. So it needs to be a systemic response, not an individual school by school response, because, you know, I would be the same as Ed or Isabella. You know, I faced those choices myself with my own son but, you know, there was some key influences in our life that actually helped us to believe that inclusion was possible. So I do think, you know, we would never sit in judgment over I think that's a really important message because we don't want to de validate the parents who are currently in the segregated system and shame them. That's not what we should be doing. We should be looking at the future and where we want to go because they have made choices on the best information that they had at that point in time. But we need to move to the future and where we need to go.
MS McALPINE: And if I could just add to that Inclusion Australia facilitates a national community of practice of families of people, so young people and older people with very complex support needs. So often that very complex mixture of intellectual disability and autism and psychosocial disability where the psychosocial disability usually comes from the trauma of violence and abuse and neglect that they experienced through the education system. But those families have learnt a lot and there's a group of them that are basically self managing plans and doing some really interesting work about what works and what doesn't work, and I think the sharing of those experiences are the very complex experiences with the much younger families who are much earlier on and with assistance would be valuable.
So there is expertise and there are solutions that are being developed particularly since the NDIS has been in place, where there's been more emphasis on longer term because that's what the insurance approach is, and there are pockets of information that could be used to really to do that, because I know that people with complex support needs are one of the groups that you're talking about, and there is things that we could sit down and get the right stakeholders in the room and do things differently.
COMMISSIONER GALBALLY: Thank you.
CHAIR: Ms Sayers, I'm interested in what you just said because one of the difficulties I have is I can't speak on behalf of parents who have chosen to send their children to special schools but if I were one of those parents and I was told that my decision had been coerced and was based on an inner an insufficient appreciation of the true position, I think I would feel, actually, a bit discombobulated, if I may put it that way. I think it's a little bit difficult to reconcile characterising decisions by parents in that way and then saying, "We would never judge them." So I invite you to comment on them.
MS SAYERS: The coercive choice is not about the parents. The coercive choice is about the systems. The systems create the coercive choice and parents make their decisions based on the current system. So it's not I can see that that might seem challenging, but when you've got coercive systems that are forcing these choices because they're not inclusive, parents are making the best decision that they can. And so that's why we can't judge families and we're never going to be able to make progress if we sit in a judgmental frame. We need to think about the future so that parents actually can make a real choice. They can make a choice between inclusion and inclusive schools, you know. There might be two schools in their suburbs, both of whom are inclusive and then they can say, "Look, I like that school better," but the coercive choice is because of the system, not because of the individuals.
CHAIR: And given that the mainstream system is failing, as I think seems to be common ground between you the two of you and also with a lot of other witnesses who have given evidence and a lot of other submissions that we have received, isn't the first task to get the house in order, to start working on the mainstream schools so that they can become more like the vision that you have for them?
MS SAYERS: It's the chicken and the egg or the carrot and the stick, if you like, but when we're dealing with such a wicked problem – and it's wicked because it's complex and it's difficult to solve we need to have multiple reinforcing things happening at the same time. So yes, we absolutely need to be building the inclusion, the funding, the resources, the teacher training, we need to be doing that, because we've been doing we'd do an absolute disservice. But we kind of need the stick that says no, this is not good enough. If this is the sort of society we want, where all children from the very beginning, if we maintain this dual track education system, there's never going to be the impetus and with principal autonomy and the way our schools are set up and that's why we need legislation, we need multiple things happening at once, because just one solution as you say, a binary solution is not going to work in this case. We need multiple reinforcing things that is going to get us, so in 10 years time when we're looking back, 10 years after the Royal Commission, we can say yes, we really made a difference because we're now at a future state where we want to be.
CHAIR: Thank you. Ms Eastman, you were going to say something?
MS EASTMAN: No. Just getting ready.
CHAIR: In that case, thank you very much for coming to the Commission and giving evidence. Again, I, on behalf of the Commissioners, are sorry, Ms Sayers, you couldn't join us in the same room but we hope that you'll be able to do that fairly shortly. Thank you very much for your thoughtful observations, many of which have been extremely stimulating and interesting and no doubt will be the subject of discussion within the Royal Commission. So thank you very much.
MS SAYERS: Thank you.
<THE WITNESSES WITHDREW
MS EASTMAN: So thank you, Ms McAlpine and Ms Sayers, and Commissioners that concludes the evidence for today and if we can resume at 10 am tomorrow.
CHAIR: Yes. Thank you very much. We'll adjourn until 10 o'clock.
ADJOURNED 4.13 PM TO THURSDAY, 9 JUNE 2022 AT 10.00 AM