Public hearing 24 - The experience of children and young people with disability in different education settings, Canberra - Day 2
CHAIR: Good morning, everyone. Welcome to the second day of Public hearing 24 of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability addressing issues related to education. I shall ask Commissioner Mason to make the Acknowledgment of Country.
COMMISSIONER MASON: Thank you, Chair. We 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, Commissioner Mason. Yes, Ms Eastman.
MS EASTMAN: Good morning, Commissioners, and good morning, everybody following the proceeding. Our first witness this morning is Gi Brown, and, Commissioners, you will see that Gi is in the witness box.
CHAIR: Good morning. Thank you very much for coming to the Royal Commission to give evidence. If you would be good enough to follow the instructions of my associate around the corner there, she will administer the affirmation to you.
<GI BROWN, AFFIRMED>
CHAIR: Thank you. I'm sure you know this, but just to be certain, the Commissioners are there are three Commissioners. You can see Commissioner Galbally on the screen. She's joining the hearing from Melbourne. Commissioner Mason, of course, is with me in the Canberra hearing room, and Ms Eastman is also in the hearing room, and I will now ask Ms Eastman to ask you some questions. If at any time you need to take a break, just let us know and we can organise that without any difficulty.
<EXAMINATION BY MS EASTMAN SC
MS EASTMAN: I will just do some formalities. First of all, can you confirm your name is Gi Brown?
GI BROWN: Yes
MS EASTMAN: And your address is known to the Royal Commission.
GI BROWN: Yes.
MS EASTMAN: You wanted to start this morning by making an acknowledgment for the traditional owners. So could I ask you to start with that.
GI BROWN: I would like to acknowledge the traditional owners of the land of which I am speaking on today here in Canberra, the Ngunnawal people. It is important to acknowledge that sovereignty has never been ceded, treaty has never been enacted and traditional land continues to be defiled to this day, and for as long as Australia has stood, Aboriginal and Torres Strait Islander peoples have fought to protect their land, their cultures and their children.
MS EASTMAN: Thank you. And are you happy for me to refer to you as Gi today when you give your evidence?
GI BROWN: Yes.
MS EASTMAN: So, Gi, can I start by asking you about your work with CYDA, and you might have heard me describe you yesterday in the opening in terms of your work as an advocate and some of the projects that you've been working with CYDA that included giving some evidence at a Senate Committee. So can we start by telling the Royal Commission about your work with CYDA?
GI BROWN: I first began with CYDA in their pilot program for the National Youth Leadership Program. And, from there, I've been given lots of opportunities to work alongside CYDA and get involved with external opportunities such as speaking at the Melbourne Senate Committee hearing into the independent assessments as well as speaking alongside other young leaders for the National Framework for Protecting Australia's Children with Families Australia and I also do some local work with an organisation, sitting as their deputy chair, as an NDIS provider.
MS EASTMAN: You have been part of CYDA's National Youth Disability Leadership Program. What's involved with that program?
GI BROWN: They have it goes for a couple of months, and you are alongside other young leaders from all around Australia where we have weekends to do workshops, run by other young disabled people about how to be the best advocate you can be and who you are and getting to build your identity as a young disabled person and building the skills to advocate for yourself and others, if you wish, and how to look after yourself, as well as getting incredible opportunities to speak to leaders around Australia in the disability sector.
MS EASTMAN: And you've been here at the Royal Commission hearing and you were here yesterday and you heard Britt's evidence, and the two of you are both members of CYDA. But you met each other for the first time yesterday. Is that right?
GI BROWN: Yes.
MS EASTMAN: Okay. So thank you very much for coming to talk to the Royal Commission today, and you know this hearing is look at education and the experiences of children and young people in education. So how we are going to take your evidence today is you have thought a lot about what you want to tell the Royal Commission and you've written down you've got some typed notes that you want to speak to. So, Commissioners, as we go along I'm going to ask Gi some questions, and then Gi will refer to their notes, and you can use those notes and read those notes or speak to those notes. Whatever you are comfortable doing. So there's some starting comments that you want to make about the terms that we are going to use in the discussion that we have this morning. So what would you like to tell the Royal Commissioners?
GI BROWN: So before I get into any of my evidence, I do use the terms "mainstream" and "special" to refer to the current education systems and I do not agree with this terminology, but I am using it today for simplicity's sake, as it is widely known.
MS EASTMAN: Right. And we have also agreed that when we talk about the experiences at school, we are going to try not to mention the names of any particular school, any principals, any teachers or teachers’ aides. If we do both slip on that, what might happen and those following the broadcast, we might just go into private mode for a moment. But if that occurs, people following the broadcast, bear with us. All right. So, Gi, I am going to hand over to you. What would you like to tell the Royal Commissioners about what you would like to share today in your evidence?
GI BROWN: So I'm going to be sharing two perspectives of young disabled people in education, which is of myself and my younger sibling. As goes for most young people, school dominated our formative years and sets us up on a trajectory path in life, and for a lot of young disabled people, school is often all we know. My entire education was through the mainstream system. I went through primary school and most of high school being praised for high academic performance, despite struggling greatly.
I found that I couldn't connect with my peers very well or make friends, and I was often bullied. Some subjects, such as maths and science, I could not grasp for the life of me and no matter how hard I tried, and I spent many hours, usually before and after classes, in tears because of them. I even had one teacher from one of these classes tell me in front of the class that I wouldn't go anywhere into life because of my poor performance in her class and my interest in pursuing the arts.
I was often an easy target for other students for teasing and bullying, and I watched other disabled students go through similar experiences. Cases of bullying against disabled students were often brushed off, as it was easier for us to be removed from the environment than what it was to stop the bullying behaviour. I learnt to stop telling my family or my teachers about the bullying and harassment because I knew nothing would be done and it would only make it worse. The last time that I had said something about it, the school counsellors had me sit in a room full of my bullies with zero warning or prior explanation and forced them to apologise to me and, as you can imagine, that made me a much bigger target.
There were instances of my difficulty to understand social cues and norms being weaponised against me. Students being dared to talk to me. My shoes stolen and held above my head just out of reach. My pants pulled down and my dresses pulled up in front of other students. And it was not just my peers, but the teachers as well. I would be frequently taunted during sporting activity, called names and told to stop wasting everyone's time. And I felt powerless, often, to say anything, as the teacher who took my class had made comments previously about how unfortunate it was that the actual good students were missing for training to us remaining students, and usually the only people that would be left were the disabled students or other students who had medical reasons for being unable to participate.
Another teacher would not let me leave the class to go to the toilet, which would later lead to bladder complications. Another teacher who would sit with me and have me repeat words that I was unable to say properly over and over and she would correct me by repeatedly telling me no and repeating the word until she was satisfied. I had yelled at a student who kept knocking things out of my hands and attempting to touch my body, and when the teacher had asked me why I yelled, I he responded that the student probably liked me and that I was not very good at reading situations and should take more consideration into learning social cues.
It was seen to be a better solution to hide and to isolate disabled students, many of us who were already experiencing a lot of isolation, to prevent bullying than what it was to educate our peers and reprimand bullying and harassing behaviours. Solutions used often alluded to disabled students being the problem in bullying, the other that disturbed the peace of fitting in. I struggled more as high school went on, and I was often completely distracted and distant and struggled to complete any of my work on time or really complete any of it at all.
But despite this, I could receive high scores in exams and tests, mostly due to just being able to memorise and not actually understanding. Which was, ironically, detrimental to my education as I was able to produce scores that were satisfactory, which is where it seemed to matter most to teachers. They were often quick to pardon my inability to interact in class, complete work or understand any of the content.
I had many teachers constantly acknowledge that I was obviously struggling and that I needed help and yet it never came. I even had teachers come to me and tell me that they suspected I was autistic and ADHD, such blatant recognition that never turned into any action.
MS EASTMAN: Can I ask you a question here. When you look back at this time and you think the teachers were aware that you were struggling, and the help never came, what do you think you needed at that point in time from the teachers?
GI BROWN: Any kind of action, whether it would have been talking to my parents about their concerns or even just elaborating to me on what I could do. It never went past comments of, "I think you're autistic. I think you're ADHD." It would never go further than that, which didn't help me in any in any kind of way and often left me feeling like there was something wrong with me. Any action on involving my support systems, on directing me on what to do or where to go for help, supporting me in class if they saw that I was struggling, just anything would have helped beyond odd comments.
MS EASTMAN: Right. So can I take you back to your notes, because I think we are up to that point where there were some classes that you enjoyed, but you didn't perform well in academic in an academic sense. So what would you like to tell the Royal Commissioners about that?
GI BROWN: So these classes that I enjoyed learning about and had an interest in, there were a number of them that I could not perform well academically in, and the teachers often suggested to me that I discontinue those subjects and choose something easier. And in all of those conversations, that would be the only suggestion. There would never be any offer of support or help or resources, only that I drop those classes.
So, entering my final year of school, I decided to apply for a special consideration for my exams, which I now regret a lot and wish I had never done so, as the process was incredibly traumatising. I was given very little time to collect evidence of my disability from specialists, specialists that would often require appointment notices of weeks or months in advance. This evidence would then be judged by a panel of strangers in some office on whether my disability was valid enough, based off of a few clinical papers. I couldn't choose the accommodations that would best suit me and I could only request them, and all of the accommodations I requested were denied. And I were given ones that had nothing to do with my disability.
This process stripped me down to nothing but a few pieces of paper with deficiency language written all over them, and anxiety eventually became so great thinking about a panel being allowed to hand down accommodations that could make or break my final exams, having never even met me, it made me feel very much like a case study or some animal being observed. I often wonder why support was always so far out of reach, but even if they had wanted to support disabled students, it just would not have been possible with such a critical lack of resources for disabled students.
In my school the assisted learning department was a small room that could fit one desk. So a teacher and a teacher's aide and a student. The only space I had to go during sensory overload or meltdowns were the toilets, which are not a safe space to calm down from those experiences. I would sometimes attempt to go sit in empty classrooms to calm down and would be immediately kicked out by staff, even if obviously distressed.
I had only ever seen the same two support staff for the six years that I was at my high school, and there was not a single program for disabled students, and any assistive technology had to be sourced by the student’s family and did not involve the school. School infrastructure would only be made accessible as a disabled student enrolled, and numbers of disabled students over the years dwindled as many of us were left with no options but to either leave school or enter special schools.
And a lack of training and understanding of staff made conflicts between myself and teachers a pretty common occurrence. I would often get in trouble for having to miss class for medical and specialist appointments and would be grilled about where I was going, why I was going and why I needed to go so often. Some teachers would tell me it was my fault that I missed class and so they would not supply me any catch-up work to do outside of class, even if I requested it.
I also would sometimes have to go home due to severe physical pain, which was met often by the most disapproval. One staff member would often question me about the existence of my pain and would tell me that it's a bad idea to go home, to stay at school, and that my future was bleak if I continued to go home. And the guilt would often become too much and I would stay at school, even when in pain, which often led to me losing consciousness or being sick while at school.
And it got to the point that this staff member was so adamant on reprimanding me that they had tried to convince me tried to convince a leading staff member to make it a punishable offence for me to even contact my parents while at school. And I began to feel so guilty, as if I was doing something wrong and there was something wrong with me by going to my appointments that were essential to my health and wellbeing, that I started to seriously consider ceasing all of my appointments.
MS EASTMAN: Can I ask you now to tell the Royal Commissioners about finishing school and the support or otherwise that you had for transitioning out of school and starting to think about what you would like to do after you finish school. You can talk to us about that period?
GI BROWN: The best way that I can describe leaving school was being pushed off the edge of a cliff. My routine disappeared. I lost almost all of my social connection, and I had absolutely no idea what my next step was supposed to be. There was zero support or preparation from the school. There was nothing about pathways or what to expect or where to ask for help. There was even an instance of the school promising that there would be information sessions for vulnerable students about the process of leaving school, and every time this was supposed to happen, it was either cancelled or postponed. And I had gone to staff members a few times asking for appointments to discuss things and I would be told, "later." So
MS EASTMAN: So, Gi, can I just stop here and give everybody a warning that what you're about to talk about may cause some people listening to the broadcast or in the room some distress. I want you to take your time and, for those following the Royal Commission proceeding, we have up on the slide some contact numbers. So sorry, Gi, to interrupt you, but I thought it was helpful to make that little warning now. Thank you.
GI BROWN: Upon leaving school, so when I would had officially ended, I struggled so much with the change and was so unprepared and so distressed by it that I became quite unwell mentally to the point of a psychotic episode. And I could not understand what was happening to me due to this psychotic episode and due to years and years of not knowing why I had struggled so much at school. But it had because and it had never been a safe space and I'd always been filled with dread and fear going to school.
But even then I wanted to return to school because it was at least a sense of familiarity and routine and there was at least a little bit of guidance. I had managed to finish school even after years of suicidal thoughts, self-harm, attempting to look for ways to leave school and looking for alternate education, and what I've taken away from that is just traumatic memories. And even two years on I still get nightmares about school and the constant self doubt that made maybe my peers and my teachers were right, that maybe I was a freak and maybe I was a weirdo and there was I was destined to go nowhere and that there was something wrong with me.
MS EASTMAN: Just pause there for a moment and tell me if you want to have a break at all.
GI BROWN: That's okay.
MS EASTMAN: You're all good. Thank you for sharing those experiences. And that has really spurred you on to say what needs to happen and what are your suggestions for change, and do you want to start to talk about some of the ideas that you've got? I think you've got an endless list of suggestions. So what suggestions for change would you like to talk to the Commissioners about today?
GI BROWN: So there is a lot that I could make, but there are a few that I think would be most beneficial for students across the board. The first is changing the narrow definition of "successful learning" in schools. This is in both mainstream and special schools, but is particularly relevant for mainstream education. The focus on scores and assessment outcomes leads to the neglect of actual learning outcomes and deep learning and understanding and fostering a sense of education that is not preoccupied with the outcome at the end but would enable students, especially disabled students, on their journey in a way that looks at them as a holistic person and complements the individual and their potential and their ambitions. And this is where I was let down a lot and lost what was once a great passion for learning.
And it would give a chance for students to disabled students to be successful based off of their own goals and their own what they want to learn and how they learn than rather than based off a rigid system of rubrics and assessment criteria. Disabled students have the right, as much as everyone else, to have choice and control in their learning journey, and school staff and teachers need to be enabled to support disabled students as best they can.
This could include education and training for all teachers, especially in mainstream education, around disability and how being disabled could impact a student in their education journey. Educating teachers on how to best support the wellbeing of disabled students, having access to funding, accessible infrastructure from the beginning, support staff, assistive technology and other resources. And without the access to these resources in mainstream schools, the foundation for any meaningful learning or support is just not there and it becomes impossible. And there is a third major suggestion that I would like to discuss after I talk a bit more about my sibling.
So my sibling has only ever been in special schools because that has been the only option that has ever been made available to us as a family and him as a student. I want to say first off that there is no doubt that being in this system has been great for my sibling, because, as I just highlighted, there just it would have not been possible in any sense of the word that my sibling would get the support that he needs in the current mainstream system.
As he has gotten older, though, it has become more obvious just how limiting the special school system can be. Resources are constantly stretched thin to be able to get to every student, and understaffing have ensured that curriculums are not continuously progressing and allowing students to not get the support they deserve and for teachers to do the best they can with the very little resources they have. Some of the things that my sibling learns now in year 9 is almost identical to things that he's been doing since grade 5.
Teachers and support staff are constantly changing, which disrupts the learning routine, and time that should be spent on schooling is instead spent on constantly having to build new relationships with staff over and over. And one of the best aspects of the special school system is the integration of allied health supports within the school. But they are so underresourced that there is just no regularity or opportunity for continuation of development.
The special school system must spend, as it is now, more time scrambling for resources and constantly readjusting than being a place of education and social connections and development. There is also very rarely any choice and control in educational settings for young disabled people. My mainstream schooling and my sibling's special schooling were both choices of necessity because there just weren't any other options, and this is even truer for my sibling.
For example, the IQ assessment tool that is used and is was used initially and still is used to determine where he would be allowed to go to school, this one number, this one assessment was able to dictate that all choice would be stripped away immediately and there was only one school that he would be allowed to go to. Our family lacked options to the point of the assessor explaining that it would be best to keep my sibling up as late as possible the night before the assessment so that he would be too tired to engage in the IQ school assessment so that he would have a better chance of meeting the admission threshold.
I think about this a lot and I don't have many words to describe it, but it's just abhorrent that my sibling has been diminished to the point of a number or an assessment, and I wonder that if he exceeded the maximum threshold IQ threshold for the school, but it was too low for mainstream schooling, then what where would he have gone? What would have become of him? And I think throughout all of this, both in the mainstream and special system, the common theme is just the dehumanisation of young disabled people to things as arbitrary and archaic as numbers or functional capacity or clinical documents.
My sibling also does not get the choice, the one choice that I got in school, which was to pursue VC or VCAL or other equivalents. His only option is to enter a senior school that focuses almost solely on life skills. There is no option for students to who want to pursue academics or arts or sport. And while life skills life skill education is one of the special school system's strong points, and something that I think the mainstream school system lacks critically, it cannot be the only focus.
And there is so much more potential and ambition for disabled students to unleash and for everyone else to realise and help support. And yet disabled people are limited to learning how to function. And why does Australia see disabled people as incapable and needing to constantly focus and learning on life skills.
MS EASTMAN: Gi, can I ask you whether your sibling has thought about transitions from school in terms of what your sibling might wish to do in the future? And what do you know about any arrangements for transitioning from school into further education, employment or exploring the world, whatever your sibling might want to do?
GI BROWN: It's a massive concern for my family and myself. I was fortunate enough that, although incredibly difficult, that there was a pathway, although limited, but for my sibling, there has been next to no discussion from the school, from the NDIS, from anyone about what the next steps are to support him as he nears the end of his schooling, what he might like to do or what the options are for what he can do. There's I've tried my best to tell him that and explain to him that he will be supported by our family to do whatever he wants to do, if he wants to go to higher education, if he wants to work, if he wants to just hang out with friends and do recreational activities.
But I'm only one person and I'm someone that struggles with those things myself. But otherwise, any of the supports that are supposed to be in place are just not thinking about this, and school for my sibling is everything. And
MS EASTMAN: Are you worried he's going to have the same experience that you had of that sense of falling off a cliff?
GI BROWN: Yes.
MS EASTMAN: And losing your routine and sense of self?
GI BROWN: Yeah, but I think I think it will be amplified by so much more because, outside of school, he there is school is his whole world. His family and his school. And
MS EASTMAN: Does he want school to continue forever?
GI BROWN: Because that's his only option for where he gets his social connection and where he gets to engage in learning activities and do things that he enjoys and work on his development. And as my dad and I have talked about a lot of times, the network for when they him and his peers leave the special school system, there is just nothing. There is nothing but their own group. And in a lot of instances, that group falls apart as soon as they leave school.
And we've had to work really hard to get him into recreational activities, to scramble to try find new systems that will hopefully be there by the time he leaves school, because I it keeps me up at night, quite frankly, thinking about how much it's going to change his world and that at the rate that it's going now, with such little support, that he's going to do that with zero explanation, zero preparation, zero expectation of what's next.
MS EASTMAN: You wanted to talk about the fact that the two systems are strictly segregated, and that's a matter that concerns you a lot by looking at your experience and your brother's experience and just generally what you know about how education works in Australia at the moment. What did you want to tell the Royal Commissioners about that?
GI BROWN: I have a lot of thoughts on the school systems being segregated, but from the perspective of myself and my sibling is that, for me, being in the mainstream system, it was incredibly common for students to make jokes about segregated special schools and treat them as a place of punishment or shame that mainstream students will be sent to if they slipped up or if they were bad. My sibling is an incredibly social person and he flourishes best when given choice and breadth in his experiences and opportunities that include social engagement.
And when he entered a program to spend a day a week at a mainstream school, he started meeting milestones and flourishing like I have never seen before. And I watched him be able to start finding a sense of self in a much wider world than the segregated system could have ever shown him. And being able to learn alongside new peers and go outside during lunch and play footy with a wide range of people was one of the most and is still one of the most important things that has ever happened in his schooling and his understanding and perception of the world.
And I suppose, at this point, it we realised that special schools are a viable asset in their own right and in some ways, but that the way that they are structured now is potentially causing more harm than good by isolating young disabled people and confining them to a narrow experience of the world and their own ambitions and potential. And I also saw a mainstream school, the one that my sibling went to, that had students that were able to leave their own prejudices and discrimination behind.
And I hate admitting it, but it was because it is the bare minimum that it was the first time that I had ever experienced and observed non-disabled people interacting and hanging out with myself and my sibling and other young disabled people in a way that was equal and mutual respect, mutually respectful. The total segregation of schools is a detriment to development and connectedness and participation, and potential of not just young disabled people but all young people who are prevented the opportunity to make friends and make connections and learn about young disabled people who are rightfully we're your peers. We're not an other. We are your peers.
MS EASTMAN: Can I ask you about what do you think needs to happen? And, again, I will use some words that might not be the words you prefer. So "integration" is a word that we hear a lot, and that has different meanings to different people. So what do you think about integration and blending of schools? Is that something you wanted to talk to the Royal Commissioners about?
GI BROWN: Well, as I just pointed out, the integration, although very minimal, that my brother had was life changing for him and for all of us. And talking to my dad last night, he made a point that I wanted to share about my sibling. Him and his friends then became teachers themselves to young people, that there is not a stigma associated with disability and eventually, after generations of integration, it would just become a norm in society.
And I believe that integration can look so many different ways, and I don't have the answer. I wish I did. But even even if it is just a program where disabled students get to go into a mainstream school or mainstream students get to go into a special school and have their normal school day but be able to mingle among our peers that we are separated from, that it would completely change, over time, the potential that young disabled people could we would have a better capacity to reach our potential and it would set the foundation for non disabled people to finally give disabled people their rightful place in society as equals and as people who have as much to give as anyone else.
MS EASTMAN: The last thing you wanted to talk to the Commissioners about why you have agreed to come here today.
GI BROWN: So as I I've talked about my sibling. He is my entire world, and I agreed to come here today because I will give everything I've got to fight alongside him in the fight for the rights of disabled people and to give him all the choice and control and good that this world can offer. We are just two of the thousands of disabled people across Australia who have experienced injustices, and this is just one setting. This is just education.
And no young person should ever have to experience what we have. And the education system as it is now is just another enforcer of the wholly incorrect attitude that us disabled people have little to give to society when the reality is that we have got the potential to change the world in every single one of us and we are lost in institutions that don't just fail to guide us but make sure, enforce that they don't guide us.
And even simple things can be done like scrapping the IQ assessment, scrap limiting young people to scores and numbers. And if you start seeing us holistically as people who are talented and skilled and intelligent and ambitious and capable, and the education system would allow this, allow this of us from childhood, then the world would finally be able to experience our disabled joy and our excellence.
MS EASTMAN: Thank you, Gi. Can I ask you a few questions and these might be back to the Senate questions without notice. The Commissioners hear from lots of different people in the Royal Commission, and the opportunity for the Commissioners to hear from children and young people is really important. How does the education system and society more generally support children and young people to have their own voice and to be heard in their own way and in the way they would like to talk to their peers, but also talk to adults and the people around them who make decisions about them every day.
GI BROWN: Well, as it is now, there is very little, but there are so many things that can be done. And myself as a young disabled person and talking to other young disabled people, the common answer that we get is that it's too hard to implement some of these things. And if I were to use CYDA as an example, to give young disabled people the choice and control and to be heard could be as simple as some of the things that an organisation like CYDA does where young disabled people are talked to about their experiences and are asked directly, "What do you need from us? What can we do to support you?"
It's can be as simple as a starting point as asking us the question. And it's very easy, with attitudes as they are now, to dismiss the things that young disabled people say, as there seems to be a common attitude that we don't know what we're talking about or that, you know, we don't understand or, in the case of non-speaking disabled people, that they don't have a voice. But it really is as simple as just stopping and listening and asking the question. Letting non-speaking disabled people have the opportunity to communicate in their own way, to hear their voice. To support young disabled people to have their voice.
And I guarantee you that you will have an endless stream of recommendations and suggestions. We need to be included in processes that involve us. We need to be the forefront, the voice of what will support our wellbeing, what will support our development, what we want, and stop having people who stop having non-disabled people assume what's best for us because the majority of the time it's wrong and we are screaming from the rooftops but no one is hearing what we are saying.
MS EASTMAN: Do you feel children and young people are supported to learn decision making? Because you've talked about choice and control, and that's often a philosophy that attaches to supports for people with disability. But to be able to exercise choice and control involves being able to make decisions for yourself, and you've talked about mainstream schools and special schools. Where do you see in the education system the support for children and young people with disability to develop their decision making skills so that they can exercise choice and control in their lives?
GI BROWN: Yet again, this is going to seem like such a simple answer, but, for example, my sibling and this is such a critical problem in the special education system, that teachers and staff go directly to the parents to hear about, "Okay, what is your child's goals? What do you want your child to achieve? What capacity or what ability does your child have?" And the student is just completely bypassed. Not asked what their goals are, what they want to achieve.
And so the option for choice and control isn't even there because I think a lot of young disabled people don't know that there is any option or that there is any opportunity to have a choice or have a say because we are so often skipped over for someone who is viewed as knowing the child or the young person better or knowing their experiences better. And if students and young disabled people were even just given the opportunity alongside families and alongside parents to say, "Well, no, maybe I actually want to focus on this. Or, actually, can we also do this?"
And letting young disabled people know in the first place that there are options and that there is the opportunity for them to have a say, because we just don't we just don't know that there is because it's never been given to us. And I think within the education system as a whole and really a lot of systems across the board is taking the time to learn about the young disabled people as people and as a cohort, because so much of our choice and control is taken away based off the assumption that we lack capacity or we lack the ability or that we don't understand.
Within my own experience, I have when I was diagnosed with ASD and ADHD, I wasn't even told that I was being assessed initially. I wasn't allowed to have a say in it until after the assessment was done or in other I I completed VCE but and that had been a goal when I was younger, but as I got to VCE, I realised I wanted to do something different. But the I continued it because I didn't know that I had any other option, and it wasn't until six months before I graduated that someone actually stopped me and said, "You know you can just leave. You can go do something else."
And that was the first time anyone had ever told me that I had a different option or that I was allowed to do I was allowed to make a decision about where I what I was doing or where I was going. And I remember I was astounded. I I asked them if they were joking because I was so astounded that there was another option and that someone had informed me of that option.
MS EASTMAN: Can I ask you another question. If you don't want to talk about this, that's absolutely fine. But we reflected yesterday in opening you heard me talk about human rights and particularly around the right to education and its purpose of fulfilling people's lives, their sense of identity, their sense of who they are. Can I ask you a question about children and young people with disability and finding their identity.
Because their identities are not just as a person with disability. They may be identified in lots of different ways. And you've told us about your pronouns and your identity. How do you feel in terms of the support for and the attitudes towards children and young people with disability being able to identify in their true self, whoever they might be and however they wish to identify?
GI BROWN: I think for young disabled people it is another instance of not being given the opportunity or even knowing that the to be able to explore our identities. I think, especially within the special education system, so much time and really every minute of the day is spent solely on focusing on the student as being disabled and their functioning and their capacity, and every other aspect of who they are is ignored or left behind.
And this, I believe, ties into so much more than just education because not having the opportunity as a young person, disabled or not, can really lead you astray in life, and I think it's one of the big problems, that disabled students upon leaving school are left with so few pathways and so few options because they weren't given we weren't given the chance to explore other identities.
My sibling is lucky in the way that, you know, he loves sport. He would play sport all day, given the opportunity, and we've tried our hardest to foster that and give him the opportunity to explore that. But we're seen as so monolithic that the opportunity is rarely there, and so how can we expect young disabled people to know if they want to go into higher education or know if they want to pursue a career and, if so, what career or what do they want to study?
And that ties in so much more broadly to human rights because then we're left with so few options that I mean, our poverty rates are so incredibly high, our unemployment rates. We're taken advantage of in employment and education. And having a chance to explore identity isn't, like, you know, a final solution, but it's a really critical point and I think something that is lacking recognition and really any knowing anything about it is how does being restricted to not being able to explore your identity as a young disabled person what does that do to our mental health and what does that do to our wellbeing?
Rates of mental illness are incredibly high in disabled people, especially young disabled people, and how much is that of that is influenced by the fact that there's a part of us that feels missing or that feels lost because we don't know what it is and we don't know how to explore it. And how much of that is because our entire lives is based off the forced forcefully applied identity of, "You're just disabled and that's all you will ever be" or "Your disability defines what you can do in life or who you are in life."
How what is the I think it would be astounding, the rates of mental illness in young disabled people, to see how much of that is influenced by the fact that everyone just views us as disabled and what that means for the rest of our life, rather than us as a multi-faceted individual who has needs and wants and goals and likes and dislikes.
MS EASTMAN: We talk a lot about human rights here at the Royal Commission, and some of the human rights are written and we can read them out. But, Gi, for you, what does having human rights mean and what would that look like for you, to know that you have human rights, and what would it be like to live knowing that your human rights are respected, protected, and valued.
GI BROWN: It almost feels silly saying it out loud, but the basic human rights of housing, of housing and shelter, access to healthcare, access to clean water, clean food, access to employment, access to income. All those basic human rights are not met by disabled people because it's so difficult to access them. And it's I almost can't believe it when I think about it, that young disabled people and disabled people's basic human rights are so critically under not met, yet there is so little acknowledgment of it.
And who knows what our capacity could become and what we could achieve and to what standing we could all get in life if we met the bare minimum threshold of all of us being able to access the basic human needs and the basic human rights. Being able to have a voice, even. We are so often talked over or talked for. Non-speaking disabled people almost have no voice because we don't let them. And I think part of the reason that people may view us as being incapable or lacking or a burden or a liability is that we aren't having our basic human rights and our needs met and respected, so how would you expect us to meet to have the capacity to flourish in life?
And the protections of our human rights are only really just starting to be talked about and starting to be met. The National Framework for Protecting Australia's Children only just this year introduced young disabled people as a priority group. The systems of guardianships written into the law that strips us of human rights, or the fact that you can go into Victoria's Human Rights Charter or Australia's Human Rights Charter and really see next to nothing on protecting young disabled people or disabled people.
And that really all we have is the UN Charter of Disabled Human Rights. And what is one piece of paper going to do to protect us? What is one document going to do to protect us? Especially a piece a document that is worldwide, that can't just be taken at face value for the unique experiences of Australia's disabled people and young disabled people and Aboriginal and Torres Strait Islander disabled people and disabled people of colour.
It's just it's just not there. The protections just aren't there. And it's I almost feel silly with my answers because there they are so basic. It is just the bare minimum for such a massive population of the country and the world.
MS EASTMAN: Gi, thank you very much for answering my questions. The Commissioners might have a few questions for you as well. Chair.
CHAIR: Gi, is it okay if I ask my colleagues if they have any questions of you? I will start, then, with Commissioner Galbally. Do you have any questions for Gi?
COMMISSIONER GALBALLY: Thank you so much, Gi. I would like to ask you about the two mainstream schools that you refer to, the first being your own that you went to, and with that one, would you have called it an inclusive school in any way at all?
GI BROWN: It's I think it depends on what angle you view it from. If I were to view it, for example, as someone a part of the LGBTQIA plus community I would say yes, because there were programs and there were groups and there were workshops and tutorials on inclusion and anti-discrimination. But if I were to say that as a disabled student, I would say absolutely not. And the experiences of peers and teachers, there was there was no one batting for disabled students in that school.
And as I said, it was not uncommon for it to the young disabled students were an afterthought. There was another disabled student I went to school with who was vision impaired, and the day before she began at school they were painting the, like, steps and poles yellow so that she could see them, and that was the day before she started school. Or there were no ramps for students who use mobility aids. They would be built as the students came.
Or I even had a consultation with one of the assistant principals about wanting to begin a program for the education of non-disabled peers into young disabled people and it struck me just how interested he was, which was a good thing, but interested in the way that he had no idea what I was talking about. And the things that I was saying, which were so basic, seemed so far out of reach for him. And if that's happening at the very top of the school, then I wouldn't expect the rest of the school to be inclusive in any kind of way.
COMMISSIONER GALBALLY: Then you describe your sibling going to another mainstream school, a different one, where the experience was really you describe it as being, you know, very surprising but very positive. What was different about that school? What had they done differently, do you know, or?
GI BROWN: Well, my sibling, he only goes to this school one day a week. But and I can't remember how long the program has been happening, but it's a partnership between the special school he attends and one of the mainstream schools. And I think the reason that the experience is so much different is because that program is in place where the students at the mainstream school are growing up in their environment and being raised in their educational environment alongside disabled peers being viewed as equals and being integrated into the community.
And young people across the board, disabled or not, are so malleable in the way that we pick up and we adopt behaviours from what we see other people doing and from what we and learn and what we do and don't know. And so I think for some of these students at this mainstream school, it just doesn't even occur to be discriminatory or to bully or tease or harass, because they've been integrated in alongside their disabled peers.
And so people like my sibling and the other disabled students that go there, they are just they are a part of the school environment. They are their peers. They are as valuable and as liked as any other individual. And my school just did not have that. You could go volunteer at the special school my brother went to, but that was optional, and not many students ever did it. And even thinking back, I was constantly surprised by how many of my peers had never met a disabled person before. Not once in their life.
And how many of my peers that, if I had social connections with, who would meet my sibling, who would just become so uncomfortable and stand offish, even with me. Peers who I who didn't know me were didn't know how to interact with me and would either treated me like a child, treat me like a baby who they had pity for, or would just be hostile. And I think that's simply because they have never met another disabled person before. And so it's a you almost can't blame them for their reactions in that regard because how would they know?
COMMISSIONER GALBALLY: Thank you.
CHAIR: Commissioner Mason.
COMMISSIONER MASON: Gi, I just want to say thank you for that beautiful Acknowledgment of Country, and it gave me a picture into the future for young Australians who have more of an understanding of this idea of intersectionality, how these many identities come together. And I just had one question about your school experience. And I am just asking about the numbers of Australians you met in school who had intersectionality, whether they be First Nations people, First Nations people with disability, LGBTQI plus people or those with from that community with disability.
Was that present in your school? People have said that over the last couple of years, they are saying and it seems to be seen more often, if you can't see it you can't be it. And so it's almost bringing what your future could be into the school by seeing people employed in the school with those intersectionalities. Just your response in was that present or not?
GI BROWN: There was me. I am not aware of there were no staff that were I went to a very I went to a public school but it was within an area that had a very low population of disabled people, of First Nations people or people of colour, and so it could be a very monolithic population. And the other disabled students there weren't many of us in the first place, and the ones of the ones that there were, we would be so isolated or hidden away that there wasn't an opportunity to find out whether they had any intersectionalities or not.
Disabled students who had support staff or had complex needs would be segregated within the community within the school and so you would never see them. And then the very I could count on maybe two hands, maybe one hand, the rest of us that were disabled. So there wasn't you didn't see that at all. And then in my later years at that school, there were two First Nations people that came to our school who experienced probably the same thing that us disabled students did, who would be isolated from the rest of the school community and wouldn't there wasn't any opportunity for them to make social connections with the rest of the school or mingle with the rest of the school or really integrate, because anyone who was considered "other" in any type of way would be separated. Even non-English speaking students would be put into separate classes. And, yeah, you would just not you wouldn't see it.
COMMISSIONER MASON: Thank you.
CHAIR: Gi, I don't know whether you heard the openings of this hearing, but during the opening I referred to sometimes to what might be described as binary approaches. And among your very, very, if I may say so, thoughtful ideas, you have referred to the experience of your sibling in moving for, at least a day a week, from the special school to the mainstream school with a more, if you like, integrated environment. I just wonder what your thoughts are on how we can move away from the notion of the two segregated sorry, two systems that never meet. Never the twain shall meet. That's an indication that sometimes the twain can meet, and I just wonder whether you've got any more thoughts about how this division can be broken down.
GI BROWN: Well, I think the dream, the big end goal would be that the system is reformed and that it is totally integrated. But getting to that point, I think I tried when I just before I left school, I wanted to start a program within my school community to for students to have the opportunity to volunteer at local disability organisations or for disabled leaders in the community to come speak at the school and meet the students. Which I, in my opinion, I think is the first step is just having exposure for non-disabled students and having a place of education to ask questions, to learn. That's, I think, a really important first step.
Because I think it would be disastrous if non-disabled students weren't educated or had that opportunity in any way and then were thrown into an environment with disabled peers. I think it would be detrimental for the disabled students especially. I think the opportunity to have more programs like the one that my sibling is in, partnerships between local schools to have a day a week or two days a week or whatever, even from where I went to school, having things like the interschool sports or the interschool swimming, why not include disabled students in that or special schools in that?
It there are so many things that we could do to start playing with the idea. And showing disabled students that there is a place for you alongside your peers and your peers want to know you and want to accept you. And then show non disabled students that, you know, everything that a lot of what you've been taught growing up and what you've seen and what you've not experienced, this is what the reality is. And you've got there's so much to gain from being friends with disabled people. Just introducing that idea.
And I think I would like to see, even possibly as an end goal, that a program like the one my sibling is in is the norm. And that it's not just disabled students having to leave their environment to go to a mainstream school, but mainstream students going into special schools and seeing that environment. And I think so much of it is just around starting that exposure and that education and then although the problem and the issue of integration feels so much bigger, and too hard to tackle, that once you set that foundation, things begin falling into the right place naturally.
CHAIR: Thank you. Thank you for that answer. I think you said that young people with disability may yell from the rooftops but not be heard, but I hope that today you feel that you have been heard, because you certainly have been by the Commissioners and I'm sure by everybody who is following this. So thank you very much for coming to the Commission. Thank you for the thought that you have obviously given and on behalf of the three of us here and I'm sure other Commissioners we wish you every success in achieving the aspirations you have. Thank you so much.
GI BROWN: Thank you.
<THE WITNESS WITHDREW
MS EASTMAN: Thank you, Gi. And, Commissioners, may I also extend the Royal Commission's thanks to CYDA, which is Children and Young People with Disability Australia, for introducing us to Gi and to Britt and the CYDA team for supporting Gi and Britt to work with the Royal Commission to give their evidence. So our thanks to CYDA and all the team there.
Commissioners, if we could adjourn for 20 minutes for morning tea.
CHAIR: Yes, it's now 11.22. Let us adjourn, then, until 11.45.
<ADJOURNED 11:22 AM
<RESUMED 11:48 AM
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Thank you, Commissioners. Our next witness is Mr Edward Croft. I think we are going to work with Ed today; is that right?
MR CROFT: Sure.
MS EASTMAN: And Ed is going to take an affirmation. That was the chair, not me.
CHAIR: Thank you very much for coming to the Royal Commission today to give evidence. We are very grateful to you for the statement you've made and for your willingness to talk with us today. I shall ask my associate to administer the affirmation to you. If you will be good enough to follow her instructions.
<EDWARD CROFT, AFFIRMED>
CHAIR: Thank you very much. I'm sure you know, but just to be clear, Commissioner Galbally, whom you can see on the screen, is joining us from Melbourne. Commissioner Mason is with me, of course, in the Canberra hearing room. And Ms Eastman is also present, and I now ask her to ask you some questions.
<EXAMINATION BY MS EASTMAN SC
MS EASTMAN: Thank you, Chair. So can I deal with some formalities to confirm that your name is Edward Croft.
MR CROFT: It is.
MS EASTMAN: And your address is known to the Royal Commission?
MR CROFT: It is.
MS EASTMAN: And you prepared a statement for the Royal Commission dated the 10th of May 2022.
MR CROFT: I have.
MS EASTMAN: And you've had an opportunity to look over the statement.
MR CROFT: Yes, I have. Yes.
MS EASTMAN: Is there anything that you want to change in the statement at all?
MR CROFT: No.
MS EASTMAN: And are the contents of the statement so what you've said in the statement, are they true?
MR CROFT: They are.
MS EASTMAN: Now, Commissioners, as I mentioned yesterday, we are not tendering statements as we go along. The Commissioners will find a copy of find a copy of the statement in the Hearing Bundles, Part A behind tab 2. And in Mr Croft's statement, at various points he makes reference to particular documents. We haven't formally included them as an annexure to the statement, but they are included in the Hearing Bundle in Part A behind tabs 18 to 25.
Commissioners may also be aware we have included some background documents by way of context, and these are relevant school records, reports and other documents concerning Ryan's education, and they are in Hearing Bundle C and there's two volumes to Hearing Bundle C. I'm not proposing to take Mr Croft to any documents during the course of his evidence today, but, Commissioners, if you feel there is need to refer to any of the documents, then we should be able to locate them relatively quickly.
CHAIR: Yes, thank you.
MS EASTMAN: Sorry about that. So, Ed, I think you've got a copy of the statement that you've made some notes on yourself or for talking to and then you've got a blank unmarked copy there. Do you want to use your copy?
MR CROFT: If you don't mind?
MS EASTMAN: All right. I will just ask Ms Healey to hand that to you.
MR CROFT: Thank you.
MS EASTMAN: So, Ed, before we start, we are going to try to not identify any particular school by name or any teacher or teacher's aide or principal or any other person by name. If I slip or you slip, then those following the Commission's live broadcast will see that we will pause for a moment. And so if there's a pause or the screen says "adjourned for privacy reasons" then the reason is that we've slipped on the names.
MR CROFT: Sure.
MS EASTMAN: Right. So, Ed, can I start by asking you to introduce the Royal Commission to you and your family, and then we will come to Ryan in particular.
MR CROFT: Okay. I'm Ed Croft. I'm a school teacher and from Western Australia. My wife is also a school teacher, and we have three sons, the eldest of which is Ryan, and then he has two younger brothers. All very close together. So Ryan is 20, his middle brother is 19, and his younger brother is 17. We did that deliberately so that all of our boys had a chance to grow up together.
And and we moved to the country. My wife and I met out in the desert as teachers, and we both had a dream of having some acreage as to bring up our sons or our children; we didn't know what didn't know what we were going to get, but in in the country, in land, in space. And and that was and we found a beautiful little hamlet about 30 kilometres south of our local town.
MS EASTMAN: You are about three hours' drive from Perth?
MR CROFT: That's correct, yes.
MS EASTMAN: And you describe living on a small farmlet with your family, but you describe that as a slice of paradise.
MR CROFT: That's right. It's
MS EASTMAN: And for the Western Australians in the room, they will know exactly what you mean. But tell us on the east coast what is it that makes this farm and your life on this farm that slice of paradise.
MR CROFT: We are surrounded by national forest. The most wonderful Jarrah, Marri forest around. It's thousands of acres of unspoilt land and we have a little slice of it and which we pretend to farm. So
MS EASTMAN: But you are also, both you and your wife work as school teachers.
MR CROFT: We are full-time school teacher, yes.
MS EASTMAN: And so how do you manage to juggle farm life and full-time school teaching?
MR CROFT: Not well.
MS EASTMAN: Okay. You have come to the Royal Commission to talk about Ryan.
MR CROFT: Mmm.
MS EASTMAN: And you are very sort of conscious, I think, of us talking about him without him being here. And I think what we wanted to do today was to ensure that he had a voice and that you were speaking for him and with him.
MR CROFT: Yes.
MS EASTMAN: And that's the approach I think we want to try to take today.
MR CROFT: Mmm
MS EASTMAN: But a lot of our discussion will feel like we are talking about him.
MR CROFT: That's how it is. Yes.
MS EASTMAN: All right. So Ryan, as you said, is your second eldest child. He's now 20 years old. And he has autism and an intellectual disability.
MR CROFT: That's right. Ryan is profoundly disabled. When we talk about Ryan, you have to imagine a person who cannot understand the abstract. He is significantly locked away in his autism. He needs structure and routine and incredible stability. He doesn't like to be around a lot of people. And he he's wonderful. He is an absolutely wonderful person. All he wants to do is clean and make the place an ordered place. He's the best bed maker in the world, bar none. And he our linen closet is the best folded linen closet in Australia. And
MS EASTMAN: I think you've said he struggles to make sense of the world.
MR CROFT: He does, yes.
MS EASTMAN: And some of his world is tuning into Sesame Street and Elmo, and I think he uses the = the YouTube.
MR CROFT: Yes.
MS EASTMAN: So does that give you a sort of window into his world and the sorts of things that he enjoys doing?
MR CROFT: Yeah. With his intellectual disability, we we we tend to think of Ryan we can't be sure of what Ryan knows. Nobody knows. Nobody is can tell us that. It's very difficult, but he he loves the antics of Bert and Ernie. And he watches them regularly. But he also goes he loves music and he can find YouTube music. The same YouTube music all the time and he plays it over and over again.
MS EASTMAN: I think that you've described it as that's the tracks of your life.
MR CROFT: The soundtrack to our life, yes, it is. And, again, I think, you know, we don't know what the song I don't know what the songs are. I'm not up with all of that. But I know which song comes next. And just
MS EASTMAN: We are going to talk about sort of Ryan's progress from an initial diagnosis and then through the education system. But you wanted to sort of highlight right at the beginning this issue around communication, and Ryan cannot communicate at all in terms of any verbal communication.
MR CROFT: No, Ryan is completely non-verbal. When he was younger, it became apparent, like, when he was first born that he took a long time to say anything. It wasn't until his brother was about 12 months old and starting to speak that we really noticed the very big difference between the two, and that was when we started the journey of trying to work out whether or not Ryan had an issue.
MS EASTMAN: And I might come back to that specifically in a moment. But in terms of communication, some might say, well, he must be able to communicate in some way in expressing choice or having connection. So when we talk about communication, other than verbal or written communication, how does he connect and how does he communicate to give you an indication of his life.
MR CROFT: He really doesn't. It's very difficult. We have to interpret, a lot of the time, his body language. He doesn't he growing up, he had some language that he acquired and it's called a form of it's called echolalia, which is he would repeat the last word that anybody would say. So I would say, "How are you today?" And he would go, "Day." "What did you have for breakfast?" And he would go, "Breakfast."
And his spoken word is not pronounced well. It's we thought he might have had a hearing problem because he he couldn't pronounce words properly. What we think is that Ryan hears and sees and feels everything at all times and has no filters. And so that's why it's a little bit garbled for him and he's the only thing he does now is vocalise. He has a vocalisation, whenever you ask him anything, which is the same sound. And that's all he does. But we have to interpret that sound as yes, no, wait, maybe. We don't know.
MS EASTMAN: You raised right at the outset that the inability of anybody to find a suitable mode of communication for Ryan has seen him break down, become frustrated and that, on occasions, you have observed, causes him to be very depressed and angry. And the consequence of that is then being prescribed very strong anti psychotic medication which is said to keep him safe. Is that a cycle you've had to be in?
MR CROFT: It is. It's you know, his when he was younger, his meltdowns were, you know, easier to contain and, you know, he was little. And we did what most parents tried would do and tried to implement strategies and, you know, behaviour management type techniques for we even went on courses and but, you know, over the years doctors have prescribed medications and, you know, it's they're awful.
MS EASTMAN: You say, "Taking that light from his eyes is the hardest thing I've ever done as his father."
MR CROFT: Yes. That's it was. Until recently and then
MS EASTMAN: We will come to that in due course. But that, I think, you know, Ed, as the Commissioners have read your statement and as we work through these steps in Ryan's life, that sense of protection that you have for him to ensure that his light is not extinguished, that comes through very strongly. And are we right in understanding that on those occasions where the strong anti psychotic medication was used to keep him safe, that that dulling for him is something that caused you great distress?
MR CROFT: It sure did. We we lasted all of a week, and both my wife and I said, "We are stopping this." The very first time, because we just couldn't. We couldn't turn our little boy into that.
MS EASTMAN: Let's talk about Ryan as a little boy. So he was born in 2001. And even his entry into life was difficult. He was born when he was born, he had an infection. That was serious, and he was treated with antibiotics. And his birth was difficult.
MR CROFT: Yes.
MS EASTMAN: As new, parents, you're filled with the excitement, the awe and that sort of deep love of your newborn.
MR CROFT: It is a very special time for any parent.
MS EASTMAN: And those early years, as parents will be aware, is a period of little sleep, lots of attention and, in those initial days and months after he was born, sleeping wasn't easy for him. And there was you noticed a lot of sort of crying and attempts, in a sense, to express himself even at that stage. But he wasn't a sleeper, was he?
MR CROFT: No. He was a very difficult baby. And that's lasted his whole life, his lack of sleep.
MS EASTMAN: So you had a sense at around age 3 months that something wasn't right. And so the first step in addressing that was to speak to your local doctor.
MR CROFT: Yes. At the time, we were teaching remotely and the nursing I think it was the nursing sister there said to my wife, "Don't be silly. Don't be one of those mothers who, you know, finds fault. He's perfectly normal. This is what babies do." So, you know, and we we did go to a doctor. And he was within norms, you know. Like, the normal ranges of, you know, whatever is in the back of your little health yellow book and for head and weight and all of those sorts of things. And we we checked them and so we just went, "Okay, he's okay. We will keep going on."
MS EASTMAN: And that sort of sense of saying, "He's in that normal range. That's what we've been told. Just continuing", but when Ryan's brother was born about 15 months later, you then almost had a comparison point. So you saw his brother develop.
MR CROFT: We did. And, you know, they were chalk and cheese. Whilst his brother wasn't much of a sleeper either, they were completely different. And, you know, Ryan chose the day of his brother's birth they were 15 months apart to walk suddenly. That was and that was a sudden a very sudden thing. We're not sure how that came you know, it was a surprise to us because, at that time, he hadn't started even you know, he was still commando crawling.
But as his brother began to develop and grow and his you know, he started to speak, you know, say words and say "mum", say "dad". Ryan hadn't I'm not even sure if Ryan to this day has said "mum" or "dad."
MS EASTMAN: When he was about 2 and a half, your wife took him and his brother to Sweden. So your wife's family had moved to Sweden and she went to visit the family. It was supposed to it be a five week holiday and you say that it was anything but. And what was it about that period of the holiday which started to really focus your mind and your wife's mind that there wasn't there was something that needed
MR CROFT: There was something wrong. Ryan had started to say a few things but it was, again, not much. But he basically cried all the way to Sweden on the plane, so much so that the you know, the people on the plane were very concerned. And Annette felt like one of those travellers that people just didn't want to sit next to. But he screamed the whole way across, almost, and then, you know, he he went backwards.
And this is something in the in the literature, in the research that we we have done and where they often talk with kids who have autism that they get to a certain point where the a child regresses a little bit. They reach some development goals and then they regress. And this is something that we definitely noticed after this. My wife had a hell of a time in Sweden. She was her mother was still working full time and so Annette was borrowing a summer house in Sweden and she felt very isolated and alone. And and then she had to come home as well and face that flight again with two very young children and one of whom was Ryan who was screaming most of the time. All of the time.
MS EASTMAN: But even after that experience, some of the people around you saying, "No, its’ - everything's fine. Everything's normal" but as parents you were were just not sure that Ryan is developing as expected. Is that right?
MR CROFT: We were not sure that's right. We took him to the local GP and he said he's he's not autistic. He used these words to my wife because he has eye contact. You know, he has eye contact. So, therefore, he can't be autistic. But, I mean, I guess back at that time the literature and the research on autism wasn't as pronounced or as further along as it is at the moment and, you know, just Ryan does have eye contact. He doesn't like it very much, but he will look at people in the eyes when it suits him or when he he's looking for something.
So he that doctor then at that point said, "No, no, no, he can't have it. That's not it." You know. And we were referred to, you know, a speech program and it was called Hanen. And then run by the local speech pathologist, I think. And then a parenting course, because maybe that's what was wrong.
MS EASTMAN: Your when he was about 3 years old, the local GP gave you a referral to see a paediatrician. But it took about eight months
MR CROFT: That's right.
MS EASTMAN: to see the paediatrician.
MR CROFT: It did.
MS EASTMAN: And it was sort of in that eight-month period where you did the speech program and started to
MR CROFT: That's right, yes.
MS EASTMAN: look at the positive parenting programs. By the time you got in to see the paediatrician, your third child had just been born.
MR CROFT: Correct.
MS EASTMAN: And you went to the appointment and you say, "I will never forget it." So what happened?
MR CROFT: His paediatrician, who we have had for the last 20 years, he took one look at Ryan and said, "Well, he's autistic." Just straight out. And I didn't really hear much of what was said. We suddenly had something to put a label on. You know, my wife had knew more about autism than I did, but I I really didn't know much about it. I had those preconceptions from, you know, as we've heard before in this hearing of 'Rain Man', and they really don't tell the whole story of autism at all.
And it it sort of transformed us. I remember driving home with my wife and saying, "Well, I don't care. Like, no matter what, we are going to we are going to do the best we can for him and we will find out what to do."
MS EASTMAN: Can I ask you, just as you said, it was an appointment that you will never forget. But being told that your child is autistic, did that come with any information, support, other referrals? What wrapped around learning of Ryan's diagnosis when he was 3 or close to 4 years old?
MR CROFT: For that actual diagnosis to have any effect, it had to be confirmed by two other health professionals: A speech pathologist and a psychologist. And and, of course, we had to that was a process to get to get those, and that extended the period. And so at that point, I don't recall any help being given except that, you know, these appointments were made but they, again, took more time, and there were things that had to be put in place for that to happen.
For example, we had to enrol Ryan in the local child care centre because the psychologist wanted to view Ryan in a social setting. Because, at that time, they had to have a triad of impairments, they called it, which was, you know, deficits in communication, deficits in speech. Sorry, communication, I already said that, deficits in social in areas of social I can't put my
MS EASTMAN: Like social functioning.
MR CROFT: Social functioning, yeah, that's right. And the third one was expressive language, I think it was.
MS EASTMAN: How did Ryan go with that process of assessment?
MR CROFT: Look, it happened around him. It was fine. Do we need to break?
MS EASTMAN: That's fine.
MR CROFT: He didn't he was fine, I think. It just happened around him. He was little and they observed then and there was no doubt that he was autistic. They had no doubt that he was he was definitely autistic. Meanwhile, my wife and I had been, you know, madly reading any report that we could find and research that we could get our hands on. And we became, you know, aware of what autism really was and how you know, what we should do or what we shouldn't do.
MS EASTMAN: What part did the two of you as the parents play in the testing process? Were you actively involved with Ryan as he was being observed and assessed, or was it at a distance?
MR CROFT: Well, we were there except for when they viewed him at, like, the child care centre. So most of the time, we were there. And because Ryan was non-verbal, they they did talk to us quite a lot and there was extensive questionnaires about us and about our life and Ryan's birth, for example, and things like that. So they did gather their information. And I think the process of actually diagnosing him was essentially rigorous. But it just took a long time to occur.
MS EASTMAN: So this process meant that a formal diagnosis didn't occur until Ryan was 4. And by that stage, after all of the reading that you had done, you felt frustrated because that reading had told you that early intervention was the key to the best outcome for children with autism.
MR CROFT: That's exactly right.
MS EASTMAN: Do you say that because you feel like you had lost years in that period up to him reaching age 4?
MR CROFT: We'd heard about early intervention as the key, and so we were keen to start early intervention as soon as we could, but we didn't know what early intervention was. I mean, we were we are educators. We were educators back then. But, you know, we were trying to work out, well, what is that? And we'd heard about ABA therapy and
MS EASTMAN: Just pausing there. ABA is applied behaviour analysis therapy.
MR CROFT: Yes. And
MS EASTMAN: So what did you hear about the ABA therapy?
MR CROFT: That it was having a great success in in helping young people with autism to make the connections in their brain to allow them to, you know, learn, essentially, language and, you know.
MS EASTMAN: Did you do anything to access that ABA therapy?
MR CROFT: We we were once we had the diagnosis, we were we were awarded four hours of support, which
MS EASTMAN: Who awarded that support? What was the context of that occurring?
MR CROFT: This was through the West Australian Government. It was the I'm not sure of the government agency, what it expressly was, but it was the Country Autism Team or part of the disability health sector. It might have been part of the CAP funding or I'm not exactly sure. But we
MS EASTMAN: But nevertheless you got four hours of support.
MR CROFT: We got four hours of ABA support, but all of our reading, all of our research told us that the minimum was 20 hours per week. And it just felt like a drop in the ocean. And the problem we had was where we lived. We live 30 kilometres from the nearest town, 90 kilometres from the nearest regional centre, and there was nobody in our area who could do this ABA therapy.
MS EASTMAN: Did the ABA therapy have to be done by a professional speech pathologist, psychologist, child development specialist?
MR CROFT: I'm unsure of that, but what I do know is that we gained special permission for the wonderful young woman from down the road, who was our babysitter
MS EASTMAN: She was 16, wasn't she?
MR CROFT: 16, yeah, 16 turning 17, I think, to be trained in delivering ABA therapy. And she went and did courses and was coached through it by the speech pathologist that was assigned to us and the OT, and she did that training.
MS EASTMAN: And your wife also learnt the techniques as well.
MR CROFT: That's correct, yes.
MS EASTMAN: So between the two of them, you had your 16-year-old babysitter trained up
MR CROFT: Mmm
MS EASTMAN: to work for the four hours.
MR CROFT: Yes.
MS EASTMAN: And your wife was applying the same techniques to the day to day
MR CROFT: Yes, that's correct.
MS EASTMAN: interactions in the house and organisation of routines and the like; is that right?
MR CROFT: Yes, that's yeah, essentially, yes
MS EASTMAN: So let's come back to Ryan. How did he go in the ABA
MR CROFT: Not well.
MS EASTMAN: process. Did it assist him?
MR CROFT: Well, he still can't talk. He doesn't he's not literate. So at that point, it didn't feel like it was doing any good, but you persevere because that that is what you're told, that, you know and it's actually quite a foreign thing to do. It is a you know, place the child's hand on the right on right thing when you ask them to point to something. It's and then you do it repetitively, you know.
And point to the you know. So they say "dog" and you point to the dog and you place their hands the child's finger on the picture of the dog with the word "dog" and it's they do that repetitively, up to 20 times, I don't know. And that happened those sessions happened, you know, all of the time. Like, you know, that's what would be the the young girl, our babysitter would have Ryan on her lap and she would be behind him, placing his hands on the – on the things. She was very good but, yeah, you know, those hours weren't much. She did extra and my wife did extra.
MS EASTMAN: So you just mentioned earlier that in terms of Ryan receiving the diagnosis, that he had to be assessed or observed in a social setting and that was a daycare setting.
MR CROFT: Mmm.
MS EASTMAN: So in terms of daycare, did Ryan continue with daycare or was it just done for that very short window of the social observation?
MR CROFT: I think we did place keep him going there for a little while. Mainly because it gave my wife some respite, and his little brother was allowed to go into the same room as Ryan, which even though he was there was an age grouping difference, so his younger brother wasn't supposed to be in the same room as Ryan. They allowed it because Ryan was even then they could see that Ryan was Ryan.
MS EASTMAN: Was the daycare the sort of first time you saw Ryan with his aged peers?
MR CROFT: Yeah.
MS EASTMAN: And is that why you say that it was illuminating on just how different he was, when you saw him with aged peers?
MR CROFT: Yes. He he didn't play with anybody. There was no interactions with other children. He he didn't really play like other children at all. You know, he lined things up in rows and everything had to be neat and tidy and ordered. And his favourite activity was packing the toys away rather than playing with them. So even at that age, you know, painting and colouring were not things that he understood to be an artistic endeavour, but you cover the white page with one one colour. And you cover the whole page with one colour and that's it. And then it's finished and it's done. And that still is the case today.
MS EASTMAN: So as he's getting older and closer to age 5, you and your wife had to think about what the options would be for school and that transition from life at home and a couple of days a week at child care into the formal education system. I know it's a long time ago, but reflecting back at that point in time, did you think you had sort of options, choices and information to inform any options or choices?
MR CROFT: We didn't really think about that we had any choices in terms of we were out of town people and because we were out of town people, there was in the town that we're closest to, there were five feeder schools and all of the bus kids went to a particular school because that's where the bus went to.
MS EASTMAN: So the bus kids are all the kids from the outlying farmlets and
MR CROFT: That's right.
MS EASTMAN: And some distance away from town.
MR CROFT: Yes.
MS EASTMAN: So that question of choice probably depended on the bus.
MR CROFT: Yeah.
MS EASTMAN: Where the bus was going.
MR CROFT: That's right. And, look, we you know, we are public school educators, and I write this in my statement, that, you know, we had no preconceptions about the school that we sent Ryan to. We we did, you know, due diligence in terms of, you know, talking to colleagues that were in the town and talking about and all of the schools, we could have sent Ryan to any of those schools at that time if those were the schools that we only had a choice of. But because apart from the Catholic one, excuse me, but apart from that like you know, that's where the bus went so it was a local public school and we expected that the standard of education would be would be fine.
MS EASTMAN: You and your wife are very strong proponents of public education.
MR CROFT: Yes.
MS EASTMAN: You both devoted your careers to working in the public system.
MR CROFT: Mmm.
MS EASTMAN: Was it the case that it wasn't really a matter of thinking either this or that. It was the local school and it was which local school. That's where Ryan was going to go. And that turned on the bus, it sounds.
MR CROFT: Yeah, it did it was predicated by the bus because that's where, you know, out-of-towners went to. So, you know, from that point of view, that's the school that was chosen. Simply from that point of view. We given Ryan's needs, we we knew that that particular school in further on down the track had had a special needs learning class.
MS EASTMAN: So your expectation is that when he started school, in kindergarten, that he would start in the local school in a regular school class and school setting. Is that right?
MR CROFT: Yes. Because it it was kindy. We we didn't really have much expectation of kindy at that point except that you know, what any parent really has, except that we were worried because our son was had this diagnosis and what was – what that might mean. And we had talked with the school around that.
MS EASTMAN: So is the arrangement in Western Australia at that time was that kindy was a program that the children could go to part-time if they were not quite at the compulsory school age?
MR CROFT: Mmm.
MS EASTMAN: And was it the case that Ryan started that kindy program on a part time basis before he turned 5 and then at that age for compulsory schooling. Is that right?
MR CROFT: Went into primary yes. That's correct, yes.
MS EASTMAN: In terms of his part time attendance, he attended two days a week?
MR CROFT: Two days a week, because bus kids normally kids go five four half days a week, I think it is. But because they are bus kids, they got to go two full days.
MS EASTMAN: But he couldn't travel alone on the bus
MR CROFT: He couldn't, no.
MS EASTMAN: at 4 and a half, 5.
MR CROFT: Still can't.
MS EASTMAN: So did he actually take the bus to kindy?
MR CROFT: No, my wife would have to drive him in or I would drive him in on the way to work and then pick him up after work. My wife wasn't teaching at this point.
MS EASTMAN: Can I ask you about what happened in the preparation for Ryan to start the two days of kindy. Was there any particular process that you had to follow? Did you have to get testing? Did you have to do an orientation program? Can you remember?
MR CROFT: I think my wife might have taken Ryan there to the kindy to have a look. That's a while ago. However, you know, we were in talks with the school and we did you know, and they did appoint a special need or an EA. Normally, there
MS EASTMAN: So EA is an education assistant.
MR CROFT: Assistant, yes.
MS EASTMAN: A bit like what we have heard over the last couple of days of teachers' aides or teachers' assistants.
MR CROFT: Teachers' aides, yes. Yes. So in Western Australia we call them education assistants. And they appointed one for Ryan at that point. Normally, there's one with a kindy teacher all the time anyway. So there were two for Ryan's class.
MS EASTMAN: Okay. But there was no formal transition plan from daycare into kindy for Ryan?
MR CROFT: Not not essentially, no, no.
MS EASTMAN: So in terms of when Ryan started at kindy, what did you observe in terms of him making that transition to a new environment and how he was supported in that transition?
MR CROFT: Look, I think the teacher did the best she could. She was a wonderful kindy teacher, but Ryan is completely different to most kids and, you know, the EAs did a wonderful job as well with Ryan. But, you know, there was lots of screaming, and that's hard to take for most people. And I think it's safe to say that the teacher was a little bit exasperated by Ryan by the end of the year.
MS EASTMAN: He was one of 28 kids in that classroom?
MR CROFT: Quite possibly, I can't remember the how many kids there were exactly. But I think up to 28 is the is the limit of what we're allowed to have in a classroom. So
MS EASTMAN: Was there a sense of what outcomes Ryan would need to achieve to complete kindy before he then took the next step of starting the more formal full-time schooling?
MR CROFT: No. Kindy is kindy. It's seen as, you know, a I think a starter into formal school. I don't think there's really that much formal assessment except that, you know, they can hop, skip, jump. You know, take turns. That sort of thing. And a pre readers and pre writers.
MS EASTMAN: So what happened for Ryan in terms of any focus on supporting his communication?
MR CROFT: There were at kindy, they were, you know, doing the best they could, but there wasn't there wasn't much. The services of the OT and the speech pathologist were, you know, they were just starting for us. And I think there were case conferences and there was certainly attempts by the school and the staff there to meet Ryan's needs and do so, and they did the best job they probably could have in that setting. I mean, he's still little and but he there's no doubt that by this stage that he is extremely different and, yeah. There's
MS EASTMAN: Can I then move to the next stage and the next transition for him. So when he’s about 6 years old, you learnt of an early trial intervention at an Education Support Centre for children with autism. And you had been told about that by the psychologist who was supporting Ryan at the time. And which he recommended that Ryan participate in the program.
MR CROFT: That's right. Yes.
MS EASTMAN: Is the Royal Commission right in understanding that the program was designed to support children with autism develop their skills to be able to participate in a regular classroom?
MR CROFT: I'm I'm not I'm not sure if that was the end game, but it was certainly to it was modelled, again, on the ABA therapy program. It was a trial that the school was trialling it. It it was trying to teach trying to bridge those gaps that and develop those links cognitively for the children for Ryan and I guess from you're right in that, you know, essentially to bring the children up to speed so that they could eventually rejoin their classmates, I guess.
MS EASTMAN: Right. Now, tell me if I'm wrong in understanding this: That Ryan went to the education support centre on Mondays to Wednesdays.
MR CROFT: That's correct.
MS EASTMAN: The Education Support Centre was located within a primary school about one hour drive from your home.
MR CROFT: That's correct.
MS EASTMAN: And on the Thursdays and Fridays, he went to his local public school.
MR CROFT: Yes.
MS EASTMAN: That was closer to home and that was what we might sort of describe as a regular school.
MR CROFT: Yes.
MS EASTMAN: So Monday to Wednesday, he's in a setting which looks like it's part of a regular school but it's separate.
MR CROFT: It is. It is separate, yes.
MS EASTMAN: And that the children in the Education Support Centre had their own playground and didn't interact with any of the other children at that primary school.
MR CROFT: That's my recollection, yes.
MS EASTMAN: Thursday and Friday, Ryan is at his local school and interacting.
MR CROFT: In a mainstream class.
MS EASTMAN: In a mainstream class and a mainstream playground.
MR CROFT: Pre-primary.
MS EASTMAN: I'm not making any judgment about this, but how did Ryan cope with what seemed to be two quite different environments with respect to interaction with his aged peers and those sort of day to day interactions with teachers?
MR CROFT: I the [REDACTED] you know, again, he's little. We probably you know, in hindsight, looking back and knowing what we know about autism now and things like that, you know, we didn't really essentially wonder how he would cope with the change in those two environments quite different environments; you're quite right. It he certainly didn't like the ABA therapy and they were they were and they were very quite strong on it. And that was what they were there for.
There were other elements to it; it wasn't just ABA. You know, they did something with music and other things. But it was an intensive program and a trial program for kids who were 5 years old. Ryan was, to my knowledge, the only non-verbal child in the program. He wasn't toilet trained and
MS EASTMAN: Do you think that had a bearing on his experience or how he might have been viewed by the teaching staff?
MR CROFT: I think it did. I the teacher who was in charge of the program certainly raised those issues and Ryan's screaming constantly with us. And we think it it was meant to be a two year trial program. He was only offered one year and
MS EASTMAN: I think your wife was told that Ryan would not be allowed to come back for the following year.
MR CROFT: That's right.
MS EASTMAN: And she was told this in a face to face meeting?
MR CROFT: That's correct.
MS EASTMAN: You didn't go to that meeting, did you?
MR CROFT: No.
MS EASTMAN: So your knowledge of this is based on what she's told you.
MR CROFT: From my wife, yes. My wife used to drive Ryan to the
MS EASTMAN: But the school basically said Ryan isn't showing any progress, and, in effect I'm paraphrasing here he himself was a hindrance to the trial program.
MR CROFT: Whether the school said that he was a hindrance, it's our belief that he was excluded from the trial program because he was, you know, affecting the results negatively. We I mean, we can't say that as verbatim fact but it was that was certainly our
MS EASTMAN: That was your sense of it.
MR CROFT: Our sense of it. Very, very much so.
MS EASTMAN: And this decision, to be told that he wouldn't be able to complete the two-year program, you say really stung you and your wife. You didn't necessarily agree with the views of the teaching staff but I think you you've described it this way:
"We also didn't see any value in flogging a dead horse."
MR CROFT: Yes. We you know, as parents, you want anything to help your child that you can get. And we were determined that, you know, if this was going to help Ryan, then we wanted and as much as we knew that he didn't like it and we were told and believe that, well, this could eventually help him, and so we were prepared to, you know to even you know, despite the fact that we knew he didn't like it and I'm not sure what 5 year old would, mind you we were prepared that, you know, if he was given a second year that we would go through that program because if there was any chance that it would help him, then we were prepared to take it.
MS EASTMAN: On that, I think you describe this so well in your statement. So if you've got a copy there. Paragraph 36, page 8 and you say there that you've had the opportunity to review your own records relating to the trial program and a copy of the report. I think the Commissioners have that report in the accompanying bundle. Can I ask you to read that paragraph?
MR CROFT: Paragraph 36?
MS EASTMAN: Yes.
"I've recently reviewed my records relating to the trial program. The reports from this time are upbeat and claim that Ryan had made significant progress. However, this meant in reality less screaming, and gains in getting Ryan to comply with the routines they established. We didn't notice any of this improvement at home and this was a particularly hard time for us. Emotionally, financially, and physically. We have been tired for 20 years now.
We did, however, believe that Ryan and our family should have been given the opportunity to keep up the trial if we wanted to. These decisions are so hard for parents when dealing with the grief you have for the child you didn't get and the hope you have that anything will help the child you did get. Being torn by these conflicting emotions leave you raw. Oscillating between sadness as you watch your child silently or not silently stimming and desperate as you are reading about the latest research or hearing about treatments and therapies that have helped other children.
As a father, man, male, I was angry and confused at what we had seemingly done to deserve this. The decision to not continue the trial at the Education Support Centre made me cross but also relieved that we didn't have to do it anymore to Ryan, or to put ourselves through the stress of getting him there."
MS EASTMAN: So Ryan's only 6 by this stage.
MR CROFT: Yes.
MS EASTMAN: And when you were told that he wouldn't be coming back for the trial in the second year, you were not given any advice at that time about what to do next?
MR CROFT: No.
MS EASTMAN: And it's a case, isn't it, that you started the negotiation with the local primary school about him attending on a full time basis.
MR CROFT: That's right. Year 1.
MS EASTMAN: Right. So what was the process sorry, I withdraw that. What was involved in the process of that negotiation to see Ryan participating in the local public school and the supports that he required to be able to do that? Because it would have been readily apparent that he would not be able to participate without adequate and appropriate support. Is that right?
MR CROFT: That's right. We we believed at the end of pre primary, we believed that, in negotiations with the school, that Ryan would be enrolled into the education learning support class that existed at the school at that time. And this was a small class with a multi age group class that a few students with a dedicated teacher. And that Ryan would be taken from that class to various other things to, you know, like sport and other – other different activities, art, perhaps, that, you know, he would necessarily do with other peers of his age. And that was we thought that would be a good model and we had conversations with the school around that. And that's what we expected.
MS EASTMAN: And what involvement did you have in saying, well, to be able to achieve those objectives, Ryan is going to need this type of support, this type of adjustment, this is what we actually need to happen?
MR CROFT: We did have at the time I'm not even sure they still call it this the visiting school autism specialists. So there were there were staff from that branch of the Education Department, I think, who were working with assigned our assigned speech pathologist and OT to implement picture exchange communication system, the PECS cards for Ryan. They had a system of baskets, of things that were very similar to doing the ABA type work. You know, matching and repetition, and so they had a system of baskets. And we were all told this, involved in somewhat. We had case conferences, et cetera. There were minutes of these things taken.
MS EASTMAN: You it was the case, wasn't it, that it was up to the school to make the application to the department for the supports?
MR CROFT: For support, yes, that's right.
MS EASTMAN: You didn't have to make that application yourself?
MR CROFT: No, no.
MS EASTMAN: And you learnt towards the end of the year that for Ryan starting in year 1 the next year, that you had not been allocated a full-time EA for the following year.
MR CROFT: Mmm.
MS EASTMAN: And that you had a full-time education assistant for .6, so
MR CROFT: For yes, so he was awarded 0.6 FTE or full-time equivalent EA, education assistant. And we couldn't understand the insanity of that that recommendation. That it was just, you know, knowing our son and knowing what there was no way that a teacher could cope with Ryan, you know, by herself with a full class of other students. This is a child who didn't sit down when told. This is a child who, you know, roamed, who walked around, who would throw things, who would you know, it just wasn't going to fly. And we couldn't understand how this 0.6 was actually awarded and that yeah, we were very concerned and worried that Ryan wouldn't have the support he needed.
MS EASTMAN: You yourself knew, as a teacher also teaching, what teachers required if there was an EA in the class.
MR CROFT: Yes.
MS EASTMAN: And the school told you about the outcome of the funding for the EA with what you describe as downcast eyes.
MR CROFT: Yes.
MS EASTMAN: Okay. So that did not deter you, Ed.
MR CROFT: No.
MS EASTMAN: You did you devised a plan.
MR CROFT: I did
MS EASTMAN: Which involved the then Education Minister, who's a well-known person in Western Australia, to visit your own school.
MR CROFT: Yes.
MS EASTMAN: And how did you devise this plan and what happened?
MR CROFT: I wrote a letter and I convinced my principal maybe Shanghaied him that to give me 30 seconds with the then Minister to plead my case.
MS EASTMAN: Just pausing there. Commissioners, you have a copy of that letter in the Part A of the Hearing Bundle behind tab 20, I think. So you've written a letter to the Minister.
MR CROFT: Mmm.
MS EASTMAN: And the Commissioners will have a chance to read that letter. It's put, may I say, in fairly strong and forceful terms.
MR CROFT: Yes?
MS EASTMAN: And you plead your case very compellingly. So did you have the 30 seconds with the Minister?
MR CROFT: I did.
MS EASTMAN: What happened?
MR CROFT: It didn't go very well. Like well, I started off well, but then I broke down and I I was emotional. I think I write that I embarrassed both of us, and that was yeah, that that was difficult for me. Probably difficult for the then Minister. And it's probably half of the reason why I got what I wanted.
MS EASTMAN: So the Minister did reply and the result was not to achieve one to one, but .9.
MR CROFT: Yeah. And I'm we were told that nobody ever got 1.0 because I don't know. The teacher has to be with the child at least some of the time, I think, is the the thinking behind that. But sort of, you know, penny-pinching, if you ask me.
MS EASTMAN: Right. So just and, again, Commissioners are sick of me saying I'm conscious of the time, but in the time that we have before we break for lunch, I want to start by asking you about that period, 2008 to 2011, which is years 1 to 4 at the local public school, to which I think you say that neither your wife or you remember very much about these years other than you remember they were hard.
MR CROFT: Exceedingly hard. Exceedingly difficult.
MS EASTMAN: This was a period of time where, as Ryan is growing up, the nature of his behaviours became more challenging
MR CROFT: Definitely.
MS EASTMAN: within the family and also challenging as a family in terms of doing just the regular activities, going to the local shops.
MR CROFT: Yes.
MS EASTMAN: Having those social interactions. That was becoming difficult. But at the same time, Ryan is also becoming even more fastidious in terms of order and neatness.
MR CROFT: Yes.
MS EASTMAN: So, for you, the sort of reconciling of different behaviours at different points in time was something, I think you say quite candidly in your statement, as really challenging for you and for the family. Is that right?
MR CROFT: It it certainly was. We we had a child who was he beat to his own drum. And he his behaviours were exceedingly you know, he would scream a lot. He would spit a lot. He'd learnt spitting from school somehow. And he he, yeah, he would just he was OCD. And that obsessive compulsiveness in him has continued to this day, but at that time it meant lining things up and putting and if we moved them, it was all hell to pay.
The he wasn't toilet trained. He wasn't toilet trained until the age of essentially 14, 15. Maybe it's, you know, starting to be a little bit better, you know, prior to that, but he was still in nappies right up until that age. But, you know, that was very difficult when our other children were now toilet trained. And I have, you know, recollections of I used to call Ryan the Minister for Funny Walks because he would run up and down the hallway, you know, watching the dust mites and the sunlight, and his little brother would, like, run in front of him and try to play chaseys with him and Ryan had no no awareness of his brother at all. You know, but his brother would, you know, try and tag him and then run back the other way and and because he was desperate for someone to play with as well. And but Ryan never played.
MS EASTMAN: So year 1, as you say, is a big year for any parent, and it was your expectation that starting in year 1 that Ryan would have the support of the EA but also have access to a learning support room and that but his enrolment in year 1 would also work with what you've described a few moments ago the special needs class.
MR CROFT: Mmm.
MS EASTMAN: But that didn't happen.
MR CROFT: No, it didn't.
MS EASTMAN: The special needs class was cancelled and he was placed in one of the two general classes for year 1.
MR CROFT: That's correct.
MS EASTMAN: You describe this as an unmitigated disaster.
MR CROFT: It was.
MS EASTMAN: Why was that?
MR CROFT: Well, we saw the change. We were given real no real reason, except that it was the the policy of inclusion that, you know, we were now running with. And it just you know, Ryan didn't suit that learning environment. He was, you know, screaming. How do you you know, when kids are sitting down on the mat, you know, as they do in grade 1, and a child refuses to sit down and screaming and, you know, the teacher wants to run through the literacy that they're learning or the you know, and this child isn't doing it, what other option have they got but to take him out of the classroom?
And that's where Ryan spent most of him time, being taken out of the classroom because he was too loud, too noisy, too much of a disruption for the other kids' learning. And, you know, you can't blame a teacher for that, because they have got an obligation to the rest of that class. But there was also an obligation to Ryan, and that wasn't being met and and that was you know, when we were we didn't we didn't really know what to do.
We relied upon the EAs a lot because there were two particular EAs who were our conduit into the into the school. They were the ones that we saw the most, who talked the most and often wrote in the communication book that we received. And they were just wonderful ladies who cared amazingly for our son. And, you know, without them you know, it it would have been untenable that we kept him there. But, you know, at least he was with those two. And
MS EASTMAN: His experience in year 1 was that he was not infrequently taken outside or to a classroom that wasn't being used to be away from the other kids if he was too noisy.
MR CROFT: That's correct. That's right.
MS EASTMAN: And so sometimes he might be allowed to ride around on his tricycle or would end up doing errands with the EAs or being watched, as you describe, endless colouring in. As you described earlier filling a whole page with colour. And I think you say it's not surprising, then, that when it came to Ryan's participation in the general class in year 1, that just he floundered; is that right?
MR CROFT: Yes, you know, they did try. Like, I can't say they didn't try. Like, they certainly did, you know. But I have to you know, in hindsight and we know this now, that it was not the right place for him to be. It couldn't be the right place for him to be. And, you know, they had the things that the visiting teachers did, and they were trying to run a program, but that was led by the EAs. And, you know, what teacher involvement that - that Ryan had, we were never very sure that it was that there was a lot.
His teacher was fantastic and she tried very, very hard and I think, you know, became an autism specialist teacher on the basis of the work that she did with Ryan. So there was work there done, but, you know, she you know, she had a class to teach. She had a
MS EASTMAN: Just finishing up with year 1, year 1 is also the time where Ryan was assessed again, and this time by a psychologist to make an assessment as to whether he also lived with an intellectual disability. And you've addressed that experience of being assessed by the psychologist in your statement. Was the outcome an additional or new diagnosis of intellectual disability?
MR CROFT: Well, he was said to be vulnerable to an intellectual disability.
MS EASTMAN: What does that mean?
MR CROFT: It means that they couldn't test him. They couldn't test his IQ. They couldn't test his intelligence because he refused to participate in the tests. It was kind of I remember sort of laughing to myself at the time, because we witnessed it. You know, the psychologist sat Ryan down and he immediately up ended the things and threw it threw it, basically, at the psychologist. So she was trying to get him to do a matching activity or something, and it looked comical at the time, but it really wasn't, I guess. But
MS EASTMAN: So the end result of that was an inconclusive diagnosis.
MR CROFT: It was inconclusive so he was diagnosed as vulnerable to it, and I didn't like it much.
MS EASTMAN: By the end of the year, you also learnt that the .9 allocation for the EA would revert back to .7 for the following year.
MR CROFT: Mmm.
MS EASTMAN: That resulted in another letter to the a new Education Minister.
MR CROFT: Change of government, yes
MS EASTMAN: But not quite the same result as the intervention that you had with the first Minister; is that right?
MR CROFT: No, it he there was no allocation of extra EA time.
MS EASTMAN: All right. So I'm going to end on this, which is year 2. And would it be fair to say year 2 was a bit of a blur?
MR CROFT: Yes.
MS EASTMAN: But it can be described as Ryan's behaviours escalating with greater meltdowns?
MR CROFT: Yes.
MS EASTMAN: That his participation in the class impacted on other students and there was a very heavy reliance on the EAs to support Ryan in year 2.
MR CROFT: Yes. It was more of the same, essentially, but, you know, the like, I need to say the school did try. They really did. But, you know, they were they were unable and unprepared, I think, essentially, not trained in dealing with a child of of a nature of my Ryan who, as I said at the beginning, is profoundly disabled.
MS EASTMAN: All right. I think if we, Commissioners, adjourn now. When we come back I want to start with year 3 and year 4, because this becomes an absolutely critical point in time.
MR CROFT: It does.
MS EASTMAN: Particularly the arrangements that were put in place if Ryan was taken out of class. So I think we might sort of have a break before we get into those topics and, Commissioners, if we could pick that up in an hour or 55 minutes?
CHAIR: Just a minor point that I at tab 20 of volume A only includes, at least in mine, the Minister's reply to Mr and Mrs Croft. If we could kindly have the letter that was sent by Mr Croft to the Minister, that would be helpful.
MS EASTMAN: So that's in Hearing Bundle Part C, behind tab 30.
CHAIR: Yes. Well
MS EASTMAN: And we can, with the Commissioners' support, identify that document and make sure you have got a copy of it.
CHAIR: We can find it. These documents have a habit of migrating from one volume to another. We shall resume at 2 o'clock. Thanks very much. If you don't mind coming back at 2. Thank you.
<ADJOURNED 1:06 PM
<RESUMED 2:03 PM
CHAIR: Yes, Ms Eastman, and thank you for coming back.
MR CROFT: Thank you.
MS EASTMAN: Thank you, Commissioners. So we will continue with Mr Croft's evidence. So just before we I think Venice is back. For those who can hear barking in the background, that is our assistance labrador. So, Ed, I think just before the break, we were finishing with year 2, and there was one incident that arose during year 2 that you haven't expressly dealt with in the statement but you wanted to address. Can I summarise it this way. By year 2, Ryan was catching the bus to and from school.
MR CROFT: That's right. He was catching it home, I think.
MS EASTMAN: Catching home.
MR CROFT: Catching home.
MS EASTMAN: There was an incident that occurred on the bus that you and Annette became aware of?
MR CROFT: That's right. Ryan had been screaming on the bus and the bus driver was a little bit frustrated with this, and he threatened to pour vinegar down his throat.
MS EASTMAN: There's a record and, Commissioners and my colleagues who have got access to the Hearing Bundle, in Volume C behind tab 46, there's a record of a meeting. What's recorded in that note is that the bus driver stopped the bus, went up to Ryan, pointed his finger at him and threatened to spray brown vinegar down his throat if he wasn't quiet. Your wife became aware of this incident and raised this with the relevant bus authority.
MR CROFT: That's correct, yes.
MS EASTMAN: I'm not going to use any names. This is an incident that caused you, your wife and Ryan some great distress?
MR CROFT: I was I was incensed. I was I was really angry as a father and yeah, and we took it to the next level and we had a meeting with the bus driver and there were representatives from his I think his company and the person who was in charge of the bus network at that time.
MS EASTMAN: The bus driver was not an employee of the Department of Education, as far as you were aware.
MR CROFT: No, he wasn't, no.
MS EASTMAN: And, as far as you were aware, the Department of Education had sort of no authority over giving directions to the bus drivers at all?
MR CROFT: No. I think there I think the bus company was concerned that they would lose the route as a contract and so the bus driver was asked to apologise to us in person, which he did, and he accepted some training.
MS EASTMAN: So he gave an apology but he also undertook some training.
MR CROFT: Some training.
MS EASTMAN: And you've seen, I think, some of the records that indicate that the training was directed at building awareness of a young person with autism. Is that right?
MR CROFT: That's correct, yes. That's right.
MS EASTMAN: But in terms of Ryan's experience of an organised day from home, travelling to school, being at school, travelling from school to home, from your observations, how would a sort of incident like that affect his routine and his sense of safety and security?
MR CROFT: Ryan didn't do well with people regardless, and his Ryan is hypervigilant, hyperaware. He like I said earlier, he has no filters, but he hears and sees everything. And he knows he picks up on people's mood very quickly and, you know, any 6 year old would have been 7 year old would have been, I think, threatened by that, by any large man pointing at him and saying, "We’re going to do this." Whether he understood what that meant is another matter, but he would have got the tone, he would have got the feeling from it, and, you know, he couldn't help his screaming.
MS EASTMAN: Right. Let's turn to year 3. So year 3, Ryan has a new teacher, and the teacher's recently joined the school and tells you that the teacher has experience in teaching autistic students. But you and Annette didn't warm to this teacher, and you say she was well meaning but you were not comfortable discussing Ryan with her. So you observed that she realised, as the year started, how difficult it was to teach Ryan in a class full of neurotypical students.
And the approach taken in that class was to give him a separate space in the corner of the classroom where he worked with his EA. He wasn't able to see anybody else. And you understand the purpose behind this or the intention was so that he wasn't distracted or wouldn't distract other students.
MR CROFT: Mmm.
MS EASTMAN: The space was organised by putting several blackboards around the desk to block his view.
MR CROFT: That's correct.
MS EASTMAN: You were not happy with this arrangement. Why?
MR CROFT: Well, it's putting your son in a corner, isn't it, and, you know, we we felt it was I don't know, we didn't see that there was a lot of science behind it or, you know, research behind it necessarily. We just thought it was a a strategy that was convenient, I think.
MS EASTMAN: So this teacher also became Ryan's year 4 teacher, and you stress in your statement that the teacher was very well meaning, but the teacher's attitude was one of the specialist telling the parents what was best for their child. That was your perception of the
MR CROFT: That's right.
MS EASTMAN: Of the encounters.
MR CROFT: Yes, I mean, I think she was a very good teacher. Again, you know, I'm a teacher and I know how how hard it is in a classroom faced with the multiple different children. Every kid is different. But what we knew is that Ryan was different to every and this is something that goes for anybody with a disability, I think, that every that just like everybody is different, people with disabilities are different, and autism manifests itself in other in individuals differently.
And being there are no specialists in autism well, there might be a specialist in autism but there's not a specialist in Ryan. We're the specialists in Ryan. And this has been something that and I think this teacher, you know, wanted us to feel like we were you know, that our son was in good hands and that she had it and but we just knew that that attitude was going to come you know, it was it wasn't going to work because she didn't know Ryan.
And she implemented the same solutions that had that had worked perhaps for another child in another setting at a different time for Ryan that just were never going to fly, were never going to work. And we we expressed this on numerous occasions. We had written conversations about certain things at different times. Our trusted EAs were taken away from us because it was felt that they betrayed confidences of the teacher. So they were no longer allowed to participate.
And when we queried this with the school, it was said, "Well, they were had worked with Ryan for such a long time and needed a break from Ryan" which, in the car park down at Woolworths at the local shopping centre, they told us unequivocally that that's not the case.
MS EASTMAN: Did you have the sense that, as parents, you were being managed?
MR CROFT: Perhaps. I certainly think, you know, the school the school understood the school was struggling with our son. The school was struggling with our son and perhaps that what we wanted for our son was not possible in that setting. And the things that we were asking for in consideration of certain things were were not being not being, you know, able to be done in that educational setting.
MS EASTMAN: During year 4, you had to attend meetings with the school to talk about how Ryan's behaviour was impacting on others. And you decided to write a letter to all parents to tell them about Ryan.
MR CROFT: That's correct.
MS EASTMAN: And the purpose of that was to build some understanding.
MR CROFT: It was to build understanding with the community, to you know, because Ryan's behaviours were impacting on others and there were there was you know, there was talk the community that the school was located in is a small community and, you know, I could well understand that if I had a child in that in that classroom, I might be concerned too, you know, about my child, you know, if they were being impacted their learning was being impacted by one particular student.
It's not an easy thing. And we were very conscious of that. And but we want we needed to explain that Ryan's behaviour was not directed at people. It was not there it was something that it was his way of coping and his way of expressing himself and he that we were asking for the other parents, I guess, to help their children understand that Ryan was different and that that perhaps maybe they could have a talk about that with their children.
MS EASTMAN: So, Commissioners, you have a copy of the letter. It's in the Hearing Bundle Part A, behind tab 24. We've got it right, this time. I think Ms Healey is on me this time with the right numbers. I want to turn to a matter that caused you to crystallise that this was not going to be the right school for Ryan to continue. So we are talking about the we are moving really between that year 3, year 4 period. Ryan was, as you say, once again roaming the corridors and not being in class. This started to become serious when he would run away from the EAs, and that, on occasions, meant running outside the school grounds and across the roads.
MR CROFT: That's correct.
MS EASTMAN: And I think you say Ryan has got no conception or awareness of danger.
MR CROFT: No.
MS EASTMAN: You are now aware, from seeing the documents, that the school put in process an application to have a closed space for Ryan where his movement could be restricted.
MR CROFT: Mmm.
MS EASTMAN: The closed space was an emptied walk-in closet, approximately 1.5metres across, 2 to 3 metres deep. The walls were painted pink. There was a bean bag. A window was put in the door. And this was a place where Ryan would have time out to if I use this word and it's probably not the right word, to "compose" himself if he was having a meltdown, as described.
MR CROFT: Yes.
MS EASTMAN: So in that place, it could be a safe place for him to have that time alone and regroup.
MR CROFT: Yes.
MS EASTMAN: You also became aware that this was a place which was also used to sanction his behaviour.
MR CROFT: Mmm.
MS EASTMAN: And you've seen in the documents that there was a plan in managing Ryan's behaviour and particular sanctions if he behaved inappropriately, in particular, spitting. Is that right?
MR CROFT: That's correct.
MS EASTMAN: So you've seen all of that?
MR CROFT: We yes
MS EASTMAN: When you prepared, your statement you were unaware
MR CROFT: I was unaware.
MS EASTMAN: that the school had to go through an application process to get approval to use a room of this kind. Is that right?
MR CROFT: Yes.
MS EASTMAN: You were aware that the school had designed the walk-in closet as a specific space for Ryan. Is that right?
MR CROFT: That's right.
MS EASTMAN: But you were not aware that it was a locked it could only it was locked from the outside and Ryan could be locked in that space. Is that right?
MR CROFT: We well, having seen the documents prior to this hearing, I could not remember whether the door was locked or whether the handle was higher than Ryan could reach. I wasn't aware. I couldn't remember. But having seen those documents, I've since learnt that it could be locked.
MS EASTMAN: Right. You were shown the modified closet, and that's how you know about the bean bag and the pink walls and the window. Is that right?
MR CROFT: That's right. One day we were we were told to come in or asked to come in. We had a meeting. And we were shown given a tour of the closet, of the time out room. And it was it was shown to us and it was, you know, designed to implement consequences for Ryan and his behaviour. And and we we agreed to it, even though we didn't want to. We felt that we had no choice and and it was yeah, it it really it hurt us a lot to know that our son was being put in this place, that he was being taken to that place and, you know
MS EASTMAN: So this is what you've said in the statement. Can I read it?
MR CROFT: Yes, please.
"We didn't have the courage to speak out about it then because we were afraid for him. But I remember my wife crying. We absolutely hated this but we just felt we had to acquiesce. Our younger son came home from school very worried one day and we had to comfort him. He told us that he had seen two or three male teachers carrying Ryan, who was screaming, by his arms and legs. I had assumed from this that the teachers must have been taking Ryan to his holding cell called the time out room."
When your younger son reported this, was this did you feel you could do anything at that stage?
MR CROFT: Not really. We we had conversations with the school around all of this. We were we were really worried about our younger son, our middle boy, because, you know, he would come home and worry about his bigger brother. He was worried about Ryan. And it was it had been confronting for him to see his brother being carried like that. And I I can't remember the exactly the conversation that we had around that particular incident, but our hearts were hardening, our attitude was changing and we we were beginning to, you know, question the school a little bit more on on a lot of this stuff because we just felt that it wasn't right and that Ryan didn't understand the punishment. Ryan didn't have the capacity to understand the punishment and and
MS EASTMAN: Did that punishment work?
MR CROFT: No. No.
MS EASTMAN: What do you think the impact of that form of punishment with the mixed messages of a time out space for him but also the same space where he was sanctioned for his behaviour what do you think the impact on him was?
MR CROFT: We hope that I hope that in his in his mind, that maybe he enjoyed going there. I you know, I can't nobody can tell because he nobody can I don't Ryan can't explain himself. I'm his only voice. And how much that affected him, to this day or I can't tell you. How much can he can he remember? How much did it cause him to fear?
MS EASTMAN: But, equally, it could be and, you know, we are only speculating is that learned behaviour as a way of being in that place could have encouraged the behaviour as well.
MR CROFT: Quite possibly. You know. We we didn't see what value it had at the time and but we've like, even though we are teachers, and I think maybe because we were teachers, we felt that classroom the class the rest of the kids had an had a you know, a right to their education just as much as Ryan and and I think that we should never have agreed to it, but we did. And
MS EASTMAN: It got to a point for you, Ed, you spoke to one of the staff members at the school and pausing here, I mean, you were in a relatively small community, so these are teachers who are your colleagues and friends as well. Is that right?
MR CROFT: That's exactly right. This
MS EASTMAN: And that's also made all of this discussion very difficult because I think you're at pains throughout your statement to say you are not trying to attribute any ill will to any person involved.
MR CROFT: I am not, no.
MS EASTMAN: So you spoke to one of your colleagues at that school, and he said to you, "Ed, I can assure you that, as the school, we are catering for the educational needs of your son. As your mate, we have no idea what to do and I suggest you find somewhere else for Ryan." That sort of, like, summed up for you what you had been feeling.
MR CROFT: Absolutely. It was seminal for me. It was it was the catalyst for me to go, right, we need to do something to change this. And it was all I needed. It was just that confirmation from somebody who I knew and trusted who actually told me the truth. And because he had to spout the education the Educational Department's you know, the Education Department's policy and line, but he gave me an aside as a friend, as a mate. And it it really did change things.
MS EASTMAN: So that then led to you making some enquiries with the Education Support Centre who you had had that earlier engagement with about what special schools might be available in the area.
MR CROFT: We initially were thinking of going to that support centre. But they basically referred us to what would eventually become Ryan's school.
MS EASTMAN: So that school, which becomes Ryan's school from year 5 through to year 13.
MR CROFT: Yes, that's correct.
MS EASTMAN: So he finished in 2020. Is located about 80km from where you live.
MR CROFT: Mmm.
MS EASTMAN: And notwithstanding that distance, you and Annette thought this would be the best place for Ryan at this point in his life and development. Is that right?
MR CROFT: We in the at the time we we my wife actually thought that that school would not accept Ryan.
MS EASTMAN: Because he wasn't disabled enough.
MR CROFT: Because she thought that he wasn't disabled enough, yes. That's correct. The you know, the the school's website at the time mainly showed students in wheelchairs and, you know, hoists and that sort of thing. So we because they had a hydrotherapy pool available at the school as well. So she didn't really think that we would be and with that 0.6 FTE allocation of an EA, she just thought there's no way that, you know, they are going to look at us.
However, luckily for us, that changed. We we went down there and we had a tour of the school and they were they were very keen to have us on board. And it was quite I remember the day very we had Ryan there, and they took Ryan out into the into the into the playground, and there was lots of climbing equipment and he went to the top of the climbing equipment. And this is the first time in this playground it's enclosed by a high wire fence. A high wire fence with, you know, a bit a parkland feel to it.
And it was the first time that, you know, they said, just let him go. Like, you know, we will just stand over here and watch. And, you know, this is the first time Ryan hadn't had an adult by his side ever, and he's taken off and he's climbed to the top of the thing, and he's proceeded to pull down his pants and look around. Now, at his previous school, that would have caused mayhem and shouts and you know, all the other kids would have, “Look at him" and laugh and or go and get the teacher or something. It would have caused a reaction. And nobody there batted an eyelid. And Ryan looked around and pulled up his pants and carried on. And we knew then that it was a place we could put our child.
MS EASTMAN: You have said in the statement that you've never regretted the decision to send him
MR CROFT: No.
MS EASTMAN: to a special needs school. Can you tell us a little bit about this school. You've described it in your statement in terms of the number of students and the ratio of teachers to the children in the class.
MR CROFT: Yeah, it was I think at the time it had a maximum of 28 kids, you know. And there were you know, five kids in Ryan's class and, you know, sometimes the adults even outnumbered the students. It was and it was it was there to effect you know, they had plans in place for each individual student and they you know, they were there focused on the child.
MS EASTMAN: So this school gave Ryan a routine and
MR CROFT: It did.
MS EASTMAN: and your view was that routine was good for him?
MR CROFT: Absolutely. You know, for Ryan they realised and with conversations with us that routine was very good and that Ryan, you know, had to have a routine and every day was the same. And not every day was the same, but every weekday was the same. So Monday to Friday, certain things happened on a Monday, certain things happened on a Tuesday, certain things, et cetera.
MS EASTMAN: Well, that's put you in good stead when it comes to somebody to put the bins out; is that right?
MR CROFT: That's right.
MS EASTMAN: So you don't have to he just does this and he is as you say, he just knows this is the bin day.
MR CROFT: Ryan has an inate ability to understand when the bin day is and he can be spend weeks away from home, but and have no we don't know how he does this, but he has he knows when bin day is. And, you know, you can't see our neighbours' bins, but he knows when to put the bins out.
MS EASTMAN: One noticeable change in the schools was the new school worked on supporting Ryan to be able to communicate and to work to assist him to learn to read, write and speak. But that wasn't a success either.
MR CROFT: No.
MS EASTMAN: So what can you tell us sort of what was happening in terms of the new school supporting Ryan with respect to communication?
MR CROFT: So with respect to communication, they were it started off with working with PECS and
MS EASTMAN: We are going to have to for everybody, some people will know PECS and PODD, but let's break that down. So when you talk about it
MR CROFT: So picture exchange card system, I think, it stands for.
MS EASTMAN: And how do you remember how that worked?
MR CROFT: Basically, pictures of different card you know, they have the word written on them, but they they are done through a program called Compic, I think it's called, and they are almost like artistic interpretations of certain things. So food, drink, you know, pizza. It could be washing, laundry. Anything you like. But they make a little picture card up and it's a visual, and they put them on a Velcro they have Velcro dot and they would put them up in an order, in a Velcro system and that would be the routine.
So first it would be this and then it would be this and then there would be recess. And once everything was completed, Ryan would have to post it into the finished box, and it gave him a sense of what's happening. And we use that today in a we are reintroducing that at the moment. But that was that at least gave him an idea of what's happening.
MS EASTMAN: Because for you, one of the goals in Ryan's individual education plan was to assist him to develop communication skills that were the right form of communication for him.
MR CROFT: That's right, yes.
MS EASTMAN: You wanted him at least to be able to write his own name and be able to count. That's something that you wanted to achieve. Is that right?
MR CROFT: Yes, we thought that that would be at least a goal but, you know, as yeah, we thought that that at least would be something. It wasn't to be, but
MS EASTMAN: So what so if that goal wasn't achieved, then what has been achieved in terms of supporting Ryan with alternative forms of communication to verbal or written communication?
MR CROFT: Really nothing. You know, there have been some sign language that but Ryan doesn't initiate any any communication in and of himself. He will repeat signs if you sign them to him. Only the ones he knows. So, for example, thank you, or finished. But thumbs up. But he he will not initiate any language himself. He do you want to talk about PODD now or -
MS EASTMAN: Yeah, we can talk about PODD, because that was something that was introduced later on in
MR CROFT: It was. It came a bit later. Yeah,
MS EASTMAN: At school. So – the - tell us about the PODD system. It's a big book, isn't it?
MR CROFT: It's a huge book, and it's filled with these PECS pictures but in a spiral bound volume. And it's it has tabs along the side of it and those tabs and it's quite weighty. It's very heavy. And it has and I don't profess to be able to use it myself. But it has "I want" and pictures for that, and then there's activities and emotions and all sorts of different layers to it that are tabbed, that respond to various different things that people so eating, activities, sleeping, getting dressed, self-care; all of that sort of stuff. And it's all and the idea was that the child would point to "I want to" and then "go" and then find the restaurant or you know, whatever it might be.
MS EASTMAN: Did you feel that this was quite complex and a little abstract for the concepts that
MR CROFT: From the outset. We when we first heard of this and we were introduced to it and shown it, we went, "This isn't going to work for Ryan. This no way this this is not going to work for Ryan." And we expressed that to the school.
MS EASTMAN: I think you wanted the school to think about even other options.
MR CROFT: Yes.
MS EASTMAN: And you knew the school was I think you describe as evangelical about the PODD system as a form of communication, but you wanted them to think about trying key word signing and using some a form of sign language.
MR CROFT: Yes.
MS EASTMAN: For Ryan. That wasn't an option for him at school, was it?
MR CROFT: Well, I think they gave it some some token, you know, attempts at it but it wasn't the focus. They they insisted on continuing with PODD. And key word sign, if you're not signing constantly, like our friends behind us, then you don't remember what to do or how to do it. And it it needs to be something that everybody around you does and, unfortunately, he like, they continued with PODD. And they tried we I asked I said to the principal, if you can prove to me and his teacher, if you can prove to me that it's working for Ryan, that he can use it, then I'm all for it.
But, I want proof. I want to know that it works and that Ryan understands it and can use it. I mean, one of one of the teachers had come up to me and said, "Ryan independently signed that he wanted to go to the church and sing songs of praise." I said, "Really? Really? Because Ryan has never been to church. Never ever been in a church. And he has no idea what a song of praise is." Like that was not it. And then when they did give us proof, it was no proof. It was just Ryan imitating what he always does, when someone says, "Point here", he points here.
Because he's been taught through all that ABA therapy, "Point here, point there. Point there. Show me the" and Ryan looks to where you want him to point and then he he points. It it was not learning. It was not communication. It was not helpful. We were told that it you know, it would take time and that he would you know, that and this. But we knew that Ryan and Ryan does not want a PODD book. He doesn't like a PODD book. We understand from his behaviour, from his body language that he you know, it means nothing to him. He doesn't understand it.
And because it requires you to have that ability to abstractly think about what where do I go and how do I do it and how do I achieve it. And he can't do that.
MS EASTMAN: Were any speech pathologists involved in Ryan's time at the special school, either in the school or privately?
MR CROFT: Yeah, we did have a speech pathologist who we engaged throughout by this time we had gone to NDIS. WANDIS had come and gone.
MS EASTMAN: Okay, so pausing there. WANDIS is the Western Australian
MR CROFT: The Western Australian National Disability Insurance Scheme version.
MS EASTMAN: So pre everybody else. NDIS, yes.
MR CROFT: Pre everybody else. Yes. That had come and gone, and we were now on to the NDIS. And so we by this stage, we had had because I had a little bit of a bug bear that no therapist had ever spent time with Ryan. Trying in all of our experience from day dot, very few therapists had ever spent time with Ryan teaching Ryan. What they wanted to do was charge a lot of money so that they could tell us how to do things.
But nobody was prepared to do it with Ryan or demonstrate it to us or how to do it with Ryan. You know, I once said to a therapist, "Well, go ahead. Show me." And they said, "Oh, no, no." You know, it
MS EASTMAN: So what did it sorry to interrupt there, but did you feel like that type of support was to teach you and Annette what to do?
MR CROFT: It was always about teaching us what to do. It was never about teaching what Ryan what to do. It was never
MS EASTMAN: What about support for Ryan?
MR CROFT: Support for Ryan was to support us. It was never to work with Ryan.
MS EASTMAN: I think you've given the example of somebody who suggested that you paint a red line on the driveway.
MR CROFT: That was one that was one suggestion from a psychologist. He said, paint on a gravel driveway, paint a red line at the top of the driveway. That way he will know not to go past it.
MS EASTMAN: How did that work?
MR CROFT: Well, we didn't do it. It was stupid. I mean, it it just you know. What a ridiculous suggestion. And, you know but that was just one example and possibly an extreme example. But I couldn't work out, well, when were these people who charge a lot of money through the NDIS, I might add when are they going to work with my son? And so I did start insisting, well, he's you might not want to come out to where we live, but because, you know, the travel and all that, and, you know, the effect on the the knock on effect of the travel, and the time to get there on Ryan's plan was quite enormous.
But I said, well, maybe in the regional town where he's going to school, and perhaps you could go there. But they just observed. They didn't work with Ryan. There were fuzzy rules about the department and other specialists coming in to a school to actually interact with children and so it was to observe.
MS EASTMAN: Can I ask you about your views, with the benefit of hindsight, on individual education plans. IEPs.
MR CROFT: Yes.
MS EASTMAN: You've got a view about that.
MR CROFT: Yes.
MS EASTMAN: And that view is informed by your sense of Ryan needing to have the opportunity to learn life skills at school.
MR CROFT: That's right.
MS EASTMAN: And you know it's a bit of a controversial area because some people are like, "School is not the place for life skills" but others say maybe.
MR CROFT: No, and, look I with respect to the people who came before me, and Gi was talking about that as – as something. But, you know, I refer back to my comment that there are lots of people who are disabled and there's lots of and they are all different, and when you have someone as profoundly disabled as my son, who is never going to read or write never going to read or write. And his IEPs, when they were when they were formulated, when he was younger we went okay, yes, they are trying to teach him how to spell his name and count to 2.
The next year, it was the same. But there was all as he progressively got older, they started to implement the subject that I teach, HASS, Humanities and Social Sciences. And they would put history and geography and economics and civics into his plan. And I wondered, what for? Because how is that relevant to his education? Now, they were couched in terms of very simple terms and, you know, essentially it meant that they were taking him out to the park and he was enjoying the sunshine or whatever it may be.
But I just thought, what a waste of time. What a waste of effort by those teachers to put those things in when, really, what we want to prepare our son in a world what is education for? It's to prepare our children for life after school. And that's what I needed for my son. And I needed I needed him he had an an inane compulsion to clean and to make tidy and to there was a perfect opportunity for him to be given skills in those areas but the school said no.
We can't do that. We have a curriculum to follow. We are required to report on this curriculum. We must put these things in here. And, at the end of the day, we are a school and those sorts of things until he reaches year 10 or beyond we cannot do vocational education or training. And I just thought what a wasted opportunity. What a waste of time, because my son still cannot write his name. Yet they it was in his IEP from forever. And in the beginning, I said, yeah, that would be great because, you know, you do. You say you want you know, to sign his name might be good if he's lost, you know. But he never learnt that.
MS EASTMAN: I think you say in your statement, don't you, that you had that sense that from kindy through to year 10, Ryan did the same thing every year.
MR CROFT: Yeah. It was
MS EASTMAN: So it wasn't that he achieved something, built those skills and then went on to the next phase. It was the same thing.
MR CROFT: And it must have been so boring for him. So life zapping, you know. Like, I guess for Ryan it might have been routine and it was comfortable and, you know, he knew what to do and so he did it. Because Ryan is very compliant like that way. You know, he will do it. But if he doesn't want to do it he does it – like, you know, he will just get it done and do it. Because then it's finished, then it's out the way, and he can post that little picture in the thing and say, right, what's next
MS EASTMAN: So can we get to year 10. And at year 10, the school did start some vocational education and some training programs. And from year 10, was there a sort of shift to focus on thinking about what will be the transition from school?
MR CROFT: There certainly was. I mean, Ryan did a lot of work around the school with a particular teacher and that was
MS EASTMAN: When you say a lot of work around the school, what was he doing around the school?
MR CROFT: He was building playgrounds and garden beds, and they shovelled a lot of dirt into they made a tyre wall and raised the level of a particular area. And it was quite a significant amount of work around the school that he did. And it like, we were very happy with this. This was not something that we went, "Oh, no, you know, Ryan's being used as slave labour." That wasn't it, you know, at all. Not at all. That was that was great. And he was doing laundry. He was doing he went to an old aged home and
MS EASTMAN: So he was doing things at school but did he also have work experience opportunities?
MR CROFT: Work experience out into the community
MS EASTMAN: So what was he doing out in the community?
MR CROFT: So he went out to an old aged care home facility.
MS EASTMAN: What did he do there?
MR CROFT: He did the laundry. He did the washing of towels and sheets and all the folding. I might add, by this stage, Ryan had completely taken over the home washing machine and dryer and did all of our washing and drying at home of the entire household. So this was from a very early age, and we were not allowed to touch the washing machine or the dryer ever. So and to do so resulted in chaos and catastrophe. So but he he would you know, and they said he was their best worker they had ever had. You know. Unfortunately, post school, COVID cut that short.
MS EASTMAN: So did he do some other things. Did he deliver brochures and other type of work?
MR CROFT: Yes, he did he went around and delivered brochures in letterboxes, walking around doing that with carers that we supplied from so the school didn't supply the carers who went there. We supplied those carers from our NDIS plan. So going out into the community was a collaboration between us and the school through our service provider that we had then at the time. And he also went to a some offices where he did cleaning of the of the offices.
You know, they weren't there for some reason post 3 o'clock on a Friday. I'm not sure why. And he would go in and clean the offices or something like that. And he you know, they were very thankful of the job he did and every Christmas gave him a $25 gift voucher.
MS EASTMAN: As he was getting to the end of school, you were giving a lot of thought about what would be ahead for Ryan.
MR CROFT: Mmm.
MS EASTMAN: You had, by this stage, already purchased a unit for him to set him up after school.
MR CROFT: That's right.
MS EASTMAN: But you didn't have the team around him to assist in that transition from school to living in a unit. So you asked you asked the school to extend him for an extra year at school?
MR CROFT: That's right. So we had purchased this property, and the idea was that Ryan would move into the property, a two bedroom unit in the centre of a regional town where because at home, there's nothing. There is no you know, we are 30km from anywhere that has a shop, and attracting carers and people out there and what would he do at home? So we figured that we would purchase this unit. We looked around for quite a while to find a suitable unit, and we found this one and it was perfect, from what we could tell.
We thought it would be eminently suitable. And so we we purchased it, but finding enough carers and suitable carers and for and that would then eventuate to 24 hour/seven care. I mean we were hoping that we had a transition plan that Ryan would spend, you know, five days, come home on the weekends, go back. You know, that sort of thing until and then slowly extend that out.
MS EASTMAN: And were you also hoping that part of that transition was that work that he was doing
MR CROFT: Exactly.
MS EASTMAN: at that aged care place or delivering the brochures or working with the cleaning, that he would have the opportunity of doing some type of work.
MR CROFT: That's right.
MS EASTMAN: While living independently.
MR CROFT: That's right. And, look, Ryan is has turned into somebody who is a great worker. He is a fantastic worker. He could you know, he loves to make things neat, tidy, ordered and done. And he we had also got him into a a charity clothes shop where he was hanging clothes on racks. Like, you know, sorting putting them on racks, that sort of thing, and doing up all the buttons. And, you know, he thrives in that area and so there was that as well.
And so getting but getting that team around him at that early stage was difficult, and to get, you know, appropriate and the right amount the numbers of people.
MS EASTMAN: So the final year of school that he did in 2020, for many people, COVID was a fairly significant interruption
MR CROFT: It was.
MS EASTMAN: to daily life and daily routine. Notwithstanding it's Western Australia, there was still a COVID impact, wasn't there, in terms of what he could do, particularly working in that aged care?
MR CROFT: Yeah, the aged care facility said that because of COVID that he could not go. There was also, you know, they had heard about Ryan's propensity for a meltdown, and that that also might have precluded him from working there as well. But in terms of the COVID, he could not attend.
MS EASTMAN: So he did finish school?
MR CROFT: He did. Year 13.
MS EASTMAN: And he graduated. Got a certificate. And a teddy bear on graduation.
MR CROFT: Yes.
MS EASTMAN: And what happened after school finished?
MR CROFT: Everything fell apart.
MS EASTMAN: What happened?
MR CROFT: The the school had done a fantastic job at organising all of these things for Ryan, and without that coordination moving forward, there when something went wrong, there was nobody to pick up the pieces. And it fell to us. It fell to us as parents. We had a support agency, but they provided the roster and the worker but nothing else. There was no there wasn't somebody in charge of that. And, you know, they had other clients and, you know, our support coordinator was in charge of a number of different clients.
And, really, their only job was to organise the you know, they tried to help facilitate at times, but it wasn't really their job. And so when we lost important support workers for various reasons, personal reasons of their own, it became this we would get another warm body who was there a carer, who had all the right intentions, but no training, no understanding of Ryan's needs. That would cause it caused a meltdown at ten pin bowling. So he's banned from ten pin bowling. He can no longer go there. Ryan's meltdowns are significant.
MS EASTMAN: Did he move into the unit at all?
MR CROFT: He did move into the unit. We had him moved into the unit and
MS EASTMAN: How did that go?
MR CROFT: It didn't go very well, because, unfortunately, Ryan has neighbours, and Ryan's meltdowns are quite loud. He screams, yells, verbalises, and he breaks things. Ryan has turned into an approximately six-foot tall young man who weighs about 150 kilos. And he's very strong and he throws things. And so what was happening, he was throwing things over the fence, yelling and throwing things over the fence when he became disregulated, which was happening because he had support workers who didn't understand his needs. Who were new, were they were trying. They were doing the best they could, but, you know, to get to know Ryan you have to spend a lot of time with him. You have to know him and how he is.
And you've got to know that you don't interrupt his routines and so he was throwing things and the neighbours complained, one in particular. And so we built at a cost of some thousands of dollars, we built a patio on the back of his unit which was enclosed, so that it prevented things from being thrown over the fence. Ryan was then falsely accused of and we banned all glass in the unit. You know, we had all the windows before we moved in changed to Perspex. And the well, not quite before we moved in. We had to move had to get them changed to Perspex quite soon after we moved in.
But he he got accused of throwing a jar of olives. This was about a month after we had banned all we told the carers no more glass objects in the home. Nothing. And we had done the patio out the back. And he was accused of throwing a glass of jar of olives and the broken jagged base of the jar of olives was left on his doormat to on his front door. You know, quite potentially he could have trod on it. And this was very concerning to us, and it and it spoke of a bit of an attitude that was forming around Ryan.
And every time Ryan had a even though they were contained to his home at this point in time, the police were called. And by the time the police got there, Ryan was over and Ryan was cleaning up and but, you know, the carers were quite rightly told to absent yourself from danger and don't put yourself in harm's way. I mean, he is a big young man. And but this ongoing caused more reports and complaints, and it started to become a campaign, we felt, where they were contacting I was being contacted by the strata company. The strata company was asking me, and I was trying to work on it. I was doing everything I could to alleviate it. We were trying to get good carers. But we lost carers. So we lost
MS EASTMAN: So what's sort of the upshot of what's happened I think you said he's no longer able to live at his unit because the neighbours have petitioned to have him evicted. Is that right?
MR CROFT: That's right, and we were sent a legal because the strata company asked its anybody that - who lived in the unit that they would only take written complaints from this point forward, and I think they asked people to film things. I'm not certain on that point, but I think that was what happened. And people started interacting with Ryan when he was having a meltdown and filming him, which only made and saying things to him, and which only made matters worse.
And it brought Ryan out of his unit and you know, he Ryan has no no idea of nudity. Ryan is an innocent. He's a 20-year-old man, but he's like a 4 year old. And the rubbish trucks came one day. And Ryan is very keen on bringing in all the rubbish bins for all of his neighbours, bringing them all in and putting them neatly in the spot where they are designated to go. But Ryan was only half dressed. He was naked from the waist down. He was on his way to the shower when the rubbish truck arrived.
So Ryan went straight outside, naked, people started filming him and saying something that led to a meltdown. It led to a person across the road, his gate being broken, and it led to, you know, a whole that led to a legal letter, eventually, that came my way from a solicitor saying that we were in breach of mind you, I'm on the council of the strata owners and I went to a quite odd meeting where I was asked to accept legal action against myself on behalf of all the owners because of this situation.
So I had to absent myself from that process but, you know, we now have a legal letter from a law firm on behalf of the owners stating that should Ryan breach the strata by laws in any way that we would be faced with a fine and legal action to forcibly evict Ryan from his home.
MS EASTMAN: So this is an ongoing state of affairs.
MR CROFT: Yes, it is.
MS EASTMAN: But Ryan returned back to live with you and the family.
MR CROFT: Yes.
MS EASTMAN: And you say in the statement this is this is the problem:
"Without school, there's no routine."
MR CROFT: Yes.
"School was a place to go for Ryan. When he was there, he knew the set up and the system. I've been talking to my wife about how there is just nowhere for kids like Ryan to go at the end of their schooling and that maybe we need to set up such a place. We are both working parents looking after Ryan and his younger siblings. I really don't know how we could find the time to be able to do that."
"There is nothing for Ryan."
MR CROFT: Yes.
MS EASTMAN: So Ryan has returned to live with you?
MR CROFT: Yes. It was at this time we also lost our support agency. So our support agency was struggling to find care workers. They tried to pull out around about October in 2021, and I begged them to stay on. And in early December, they gave us 28 days' notice and so we had no we had no support agency, and we couldn't we had to bring Ryan home. And getting support workers out to where we live is very difficult.
And with no support agency, we didn't know what to do. So we hunted around. Nobody in our regional town, no agency providers were willing to take us on at all. And so we had to go as far as Perth, and we found a support agency who was wanting to break into the [REDACTED] and they said and we warned them about Ryan and we said, "Look, you know, this is he's very complex and we can't take him to the unit" and well, we could at that stage. We did take him back to the unit.
This was sorry, it's before the legal letter, we this was occurring. So the legal letter came as a result of taking on the new support agency because their support workers were highly inappropriate for Ryan. They were inexperienced, aged care workers mostly, I think, non-English speakers mostly, and they didn't understand Ryan, and they were relying on a number of previous support workers who we maintained and kept as
MS EASTMAN: Sorry I just want to bring you back to Ryan having to return home. And just that not being
MR CROFT: Appropriate.
MS EASTMAN: Appropriate. And I wanted you to tell the Royal Commissioners about where things are up to now, and if it helps to read what you've set out in your statement from paragraph 113 onwards. I think what you've described there says it well, and I will invite you to read paragraph 113 to 115.
MR CROFT: Okay. I will read that.
MS EASTMAN: Then what we might do, Commissioners, is have a short break just to give everybody a bit of a breather. So can I ask you to read paragraph 113 through to the beginning of 116.
"Things have deteriorated so much now at home that we are were recently forced to take Ryan to the regional hospital, 90km away from our home, and admit him to the emergency department. I visit him there every day. Ryan couldn't stay in the emergency department. He has been moved to another ward and is being kept in a room with a security guard at his door 24 hours a day. An interagency support group is trying to find a way to get him out of the hospital.
The senior medical practitioner in the field of psychiatry at the hospital told us that she can't treat Ryan because he can't communicate and won't be able to respond to cognitive behaviour therapy. We have been told that a psychiatric ward is not the right place for Ryan because he has a disability, he is not suffering from psychosis, and the patients in the psychiatric ward would not be conducive to helping Ryan due to his obvious vulnerabilities and he would be in a considerable danger.
I would be afraid for Ryan's safety if he was placed in a psychiatric ward. There is no crisis health facility available for people like Ryan. Ryan is a complex case. Ryan has now been in hospital for seven weeks."
At the time of writing. It's now 13 weeks:
"In that time, he has seriously damaged three rooms, and I've had to work closely with the hospital to allay staff fears and to be an advocate for a voiceless young man who has the intellectual capacity of a 4-year-old. He is frightened and confused."
MS EASTMAN: Tell me if you want me to read it or want to just take your time.
MR CROFT: I'm right. I'm right:
"He largely sits in his room and listens to music or Elmo on his iPad. He is being sedated with high doses of antipsychotic medication which, in the senior medical practitioner's opinion, is highly immoral, yet the only possible course of action possible for the safety of other patients, staff and Ryan. I personally suffer from high levels of guilt and depression over my decision to place Ryan in hospital.
I did not initially have the support of my family. My wife was heartbroken. My youngest son was highly emotional and affected too. My middle son was angry at me and stated that he would quit university to care for Ryan in preference to what I did. I had no real choice. We could not get appropriate care. We were exhausted, and I was afraid for what was going to happen if I didn't make changes. I had to act.
Now that I have, I struggle with that decision daily. It is why I travel to see him every day. It isn't his fault. My family have come around, but there isn't any end in sight at the moment. There is a lack of suitable housing for Ryan to move into. There are limited appropriate support workers willing to take on a person like Ryan with such complex needs. I have an interagency group with representatives from various departments all working to arrange a discharge of Ryan from the hospital to suitable alternative arrangement, and so far the horizon looks dire."
MS EASTMAN: Ed, when you wrote that, Ryan had been in hospital for seven weeks. It's now 13 weeks. And this is an ongoing state of affairs, isn't it?
MR CROFT: It is.
MS EASTMAN: So even coming to the Royal Commission in Canberra has triggered some other issues in the hospital, has it not?
MR CROFT: That's right. I upon entering here yesterday, I received a phone call from [REDACTED] from police. And Ryan
MS EASTMAN: Can I just say, you don't have to speak about this if you don't want to. I'm happy if we just frame it as it's ongoing issues
MR CROFT: There are ongoing issues. He's been sedated. For
MS EASTMAN: He's sleeping, what, 20 hours a day?
MR CROFT: Up to 20 hours a day out of every 24 hours, he's asleep. When I take him out when I can get him out, he's shaking. He's falling asleep while he's standing. He's vacantly staring into space. But it's not had the desired effect of altering you know, he's still having meltdowns because of his inability to communicate his needs. And all of these meltdowns are over the medication. Yet the hospital will not reduce his level of medications because they are afraid of him.
They won't go into his room. We are the ones who have to give him the medication, and it's and it's immoral and it's wrong. He's being punished because the hospital doesn't have the ability to look after him the way he needs to be looked after, and I have no choice. I've got to there is nowhere else I can't bring him home again.
MS EASTMAN: Ed, the you and your family are in an acute critical crisis as you're here giving evidence in the Royal Commission. That burden that you carry of not being able to find a solution is something that you feel you needed to tell the Royal Commission, and, as you say, until people walk in your shoes, it's hard for people to understand the depth of the crisis and the acute situation that you are presently in.
MR CROFT: That's correct. I I can't express just how hard it is to have Ryan in that place knowing that I put him there with no other option. The
MS EASTMAN: Can I ask you this, and we will have a break. What does support look like for you at the moment? And if you are supported, how do you then support your son?
MR CROFT: I I have gone away from the agencies. Like, I I'm trying to build a team around Ryan at the moment. I have attracted an excellent support worker at the moment who is building a relationship with Ryan, and he is a fantastic person. And the only way I've done that is to promise him the most money from Ryan's plan that I can legally do under the NDIS price guidelines. And that's $62 an hour. $62.01 an hour. That's what the agencies charge to provide a support worker to Ryan.
So I am paying that person and I've you know, they agencies pay about half of that. I'm not entirely sure of the different rates, and it's slightly more and slightly less, depending on who you talk to or who they that support worker is. But it's remuneration of support workers that's the problem because you can't find support workers. And if you know, support for me? You know, support for me, I don't even know what that is.
You know, I don't have the I don't have the luxury of I've got a full time job and one that I'm passionate about, but I also have a full time job with my son Ryan. And I don't have time to I don't know what the support looks like. It's I don't know. I've got a family to support. It's not something I it's not a question I can answer. I don't know what it looks like. I don't I don't understand it. I'm sorry.
MS EASTMAN: The last part of your evidence, you've described as your hopes and suggestions for change. And this is looking to the future. Do you want to take a break now and then come back to this?
MR CROFT: Please.
MS EASTMAN: And then, Commissioners, after we've had a break, I will ask Ed to talk to you about his hopes and his suggestions for the future.
CHAIR: It's 20 past 3. Let's have a break until 25 to 4. Okay. Thanks.
<ADJOURNED 3:20 PM
<RESUMED 3:49 PM
CHAIR: Thank you, Ed. The position, as I understand it, is that the internet is out in Brisbane. That has disrupted the connections for Law in Order; therefore, we are unable to proceed live. But what we will do is to continue. We do not want Ed to have to come back tomorrow, so we will finish Ed's evidence this afternoon and what the proceedings will be recorded and placed on the website so that there will be a record and anybody who wants to follow will be able to do so. So thank you very much. Sorry for the delay. Yes, Ms Eastman.
MS EASTMAN: Thank you, Commissioners. So, over the break, Ed and I have talked about how Ed would like to share the last part of his statement and his evidence with you. So Ed is going to read from paragraph 116. I think there are a couple of paragraphs that follow where we have already touched upon some of the topics or the evidence, and so, Ed, in your discretion, you might jump a couple of lines or parts of the paragraph as you consider appropriate. But we can follow along from paragraph 116. Thank you, Ed.
MR CROFT: Thank you. My hopes and suggestions for change. With regard to education and disability, I would like to see more specialist schools and more Education Support Centres within schools. Too many schools are required to struggle along with student they are ill equipped to cater for. Not every child can cope with mainstream schooling, and nor can teachers adequately cater for the individual needs of all students when they are present in mainstream classes with significant needs beyond the training of the teacher. With well funded specialist schools and local options for parents, students with disability might get the help they need from highly trained teachers in their local communities, if there were to be the case.
Parents do and should have the option of enrolling their child in mainstream classes, if they think that's in the best interests of their child. For some students with a disability, this is appropriate and the right and proper mode of education that often happens in my opinion what often happens in my opinion is that teachers are then placed in a position where they don't have the skills, experience or time to appropriately cater to the specific learning needs of a student and sometimes multiple students in their classrooms.
There needs to be far more support for teachers in this area, with training, more education assistant or EA allocation and smaller class sizes as a multiplier when teachers are expected to teach students with a disability. This should increase with the level of disability that a student presents with. There also needs to be an honest and open conversation about the needs of schools versus the needs of parents. All schools are well meanings. They are places where students are generally safe and well cared for, and teachers strive to do the best job they can in their given circumstances.
Do they get it right all the time? Not always. And improvement can and should always be sought. This is in a teacher's DNA, and they are their own harshest critics. When schools don't get it right, there needs to be a very simple and positive guide to complaint resolution enacted across the whole system. This would make the process easier for parents and schools to implement changes. There also needs to be a clear reference to what is possible and what is not so that schools are not inundated with complaints.
Often for parents, schools serve more than one purpose: To educate and to provide respite from their child with a disability. For a school only to educate is their concern. Behavioural issues that ensue because of students' disability are often a point of contention and a cause for high levels of anxiety for parents. A clear set of positive guidelines would, I believe, help all parents, not just those with a disability, resolve grievances within schools. Schools also need to understand that whilst they are not babysitters, sometimes the best education comes from simply having a safe and positive place to go, and that learning from a book doesn't suit everyone.
Individual education plans or IEPs need to be meaningful and not a bureaucratic box ticking exercise that causes unnecessary work for teachers and turns off parents to the education process. They need to be created in close conjunction with parents about what is in the best interests of their child and what they want to see their child achieve. This needs to then be tempered with realistic expectations based on the educational setting the student is placed in.
They need to be written in plain language and not in Edu speak so that everyone, including teachers, are across the expected outcomes. They should be brief, working documents that are achievable. Too often, they are time consuming exercise completed by teachers as an expectation with deadlines and their contents is meaningless to parents, who simply turn off and sign in the appropriate place. I know I've done it a number of times.
I battled for years to find the relevance of history and geography, etcetera, in my son's IEPs. As a parent, I just wanted my child to be taught relevant and meaningful skills that might just make a difference to his life after school.
CHAIR: Take your time.
MR CROFT: Yes. I will just move on to the next point, please. There needs to be a specialist support and appropriate care put in place to help kids like Ryan after they have left school and who have life long developmental disorders. This should just - not just be left for parents to work out. There is nothing on the high end of the autism spectrum for people like Ryan. Ryan's school provided a good plan and a coordinated program of events that Ryan could do, but after school the coordination dropped off, and when issues occurred, there was nobody but us parents to pick up the pieces.
Support agencies are really about providing a support worker, their rosters and whether or not their offices are suitably big enough. Vocational training and employment support services for the profoundly disabled need to be established and funded for inclusion in the NDIS plans. And I I point to the recent Western Australian experience of a large provider now changing their model and going over because it's simply not profitable. And this is one of those sheltered workshop type places, and it's just going to put added burden on the provision of support workers for people with disabilities.
In my experience and I understand for many people, navigating the bureaucracy of the NDIS is crushing. It presupposes high levels of literacy and understanding. This needs to change. The national call centre approach is so difficult. NDIS call centres need to be staffed and placed in each state. Support coordinators also need to be a part of an initial allocation that supports people to find out what is possible and how to go about accessing those supports.
I believe that the NDIS has become a cash cow for the burgeoning number of startups entering the disability sector. The agencies charge large amounts of money per hour for their services. Therapy services are even more costly, yet the support worker is one of the lowest paid jobs in the economy. This must change. How the cost of supplying a support worker at $30 an hour be 100 per cent more. Agencies charge about $65 an hour to the NDIA but only pay half of this.
Meanwhile, while organising this, the agency charges $167 an hour against the participant's plan. To my mind that doesn't pass the pub test. It was so much better when it was government run, and I think that a socialisation of the process would be much better and save the taxpayers a lot more a lot of money. At least look at a much better cost effective alternative. Support workers need to be supported. One of the biggest challenges I face as my son's advocate and guardian is a provision of suitable care.
The remuneration for support workers need to increase dramatically. Mahatma Ghandi said that the true measure of any society can be found in how it treats its most vulnerable members. By paying those who look after our most vulnerable a subsistence wage, what are we saying? How much do we value this work? Support workers need a career pathway. One that provides them with the opportunity to progress with training and, accordingly, higher rates of recompense.
Likewise, not all support work is the same. A support worker can be given the task of looking after a person who has simple needs and the work is relatively easy. Alternatively, they could work with my son, who has complex needs and who can be explosively violent, should things go badly. It's my understanding that they both get paid the same wage by and large. I believe the difference effectively for working with a complex needs participant is about $3 an hour.
How is this remotely fair and it is a real reason why agencies cannot keep or attract good support workers to work with Ryan. Why would they when, for the same money, they can work with somebody less likely to throw something at them. He still deserves care. His needs are just greater and more complicated. That's why he has been in hospital because we could not find suitable care. In a time of full employment, disability support workers are hard to find. Bar work pays much, much more. It's all about priorities.
I would also like to ask the Disability Royal Commission to consider the need for the provision of dedicated health facilities for the most profoundly disabled in our society. There needs to be a level of healthcare that specialises in the treatment of people with disability. This includes mental health beds. How does a psychiatrist treat a non verbal patient, or a medical doctor for that matter? I would like to leave it there, if that's okay.
But I would like to thank the Disability Royal Commission, the Commissioners, Counsel Assisting and each of their staff for their consideration and for the opportunity to provide my testimony. Thank you very much.
CHAIR: Thank you, Ed.
MS EASTMAN: Thank you, Ed.
CHAIR: Ms Eastman, does that conclude your examination?
MS EASTMAN: Yes, it does. Thank you, Chair.
CHAIR: Thank you. Ed, if it's all right with you, I will ask the Commissioners if they have any questions to put to you. I will start with Commissioner Mason.
COMMISSIONER MASON: Ed, I want to say thank you for coming in and working with the commission to provide your evidence today. I really think that what you've told us today is a life course story and your son's life still has many years ahead of him, but you have very eloquently told us family life, his life and the systems that in many ways didn't have the resilience or the imagination to support him, curiosity to support him.
I would describe it as kicking the can down the road, particularly around that Educational Support Unit. So I don't have a question, but I just want to say thank you, and we ought to learn from this experience. Thank you.
MR CROFT: Thank you very much.
CHAIR: Commissioner Galbally.
COMMISSIONER GALBALLY: Look, I just want to add my thanks to you for coming and to tell you how sorry I am about the position that you're in and I really hope it resolves so that Ryan can get on, you know, and have a good life. That's all I'm not sure that's yeah, so I am really hoping that will work out for you. Thank you very much.
MR CROFT: Thank you, Commissioner.
CHAIR: I wonder if I could just ask you, Ed, you referred to the effect of COVID 19 on the work that Ryan was doing at the time. If that hadn't happened, if COVID hadn't intervened, what do you think might have been the course for Ryan over the last few years?
MR CROFT: To be honest, Chair, I really I don't think it would have changed markedly, because it wasn't COVID, essentially, that was a problem. It was the lack of coordination post schooling. There's no tertiary, no third level of support once you leave secondary schooling for kids like Ryan. And I think that's that is something that really is missing in the story that, that this Disability Commission could really change, you know.
And I I think it needs to be considered by the NDIS that there is a gap in that area where, you know, kids go off, they go out into the world but if they they are complex and they are complicated and they have profoundly difficult circumstances to navigate, they need extra support in those areas, and it's sadly lacking.
CHAIR: Thank you. Commissioner Mason indicated how important it has been for us to hear the account that you have given of Ryan, your family and your own experiences. These are stories, experiences that we have to hear. They are difficult to hear. They are more difficult for you to tell, I think, and we appreciate just how difficult it is to come to an environment like this and to tell give the account that you have and we are extremely grateful to you for doing that. And we have learned a great deal from your experience.
Commissioner Galbally expressed the hope that things might improve. The Royal Commission is not a body that can solve particular problems, and I'm sure you understand that. By the same token, we have representatives from the State of Western Australia and from and representatives of the NDIA. There's nothing that I can say to them that specifically relates to your case, but they have heard what you've had to say, and perhaps that may, in due course, lead to something. But that, of course, will be a matter for them. But I thank you again for coming to the Royal Commission, and on behalf of all of the Commissioners, we wish you, Ryan and your family all the best.
MR CROFT: Thank you very much.
<THE WITNESS WITHDREW
MS EASTMAN: Thank you, Chair. That concludes the evidence for today. Tomorrow morning, we were going to start a little earlier at 9.30 a.m., and Bas will be our first witness tomorrow morning.
CHAIR: Very good. 9.30.
MS EASTMAN: 9.30.
CHAIR: Right. Okay. We will adjourn until 9.30 tomorrow.
<ADJOURNED 4:06 PM TO WEDNESDAY, 8 JUNE 2022 AT 9.30 AM