Submission 148 — Name Withheld — Select Committee on Autism | External submission

SENATE SELECT COMMITTEE ON AUTISM

| am a mother of four boys, my youngest son who is now 8 years old, is remarkably autistic and also has an

intellectual disability. He needs help in many areas of his development, predominantly in his communication skills, language development and understanding, sensory development and awareness, continence, he is mostly non verbal but is beginning to use verbal language at home and in therapy as a means of communication. He has been in

therapy since he was three years old, the types of supports he has benefited from include:

e Intensive 1:1 ABA centre-based therapy varying from 15 hours per week to 9 hours per week dependent on NDIS supports and family finances.

° Speech therapy 1:1 weekly

° Occupational therapy 1:1 fortnightly and at times weekly

e Physiotherapy and exercise physiology

e A paediatric continence specialist

The profound impact my son’s autism and his disability has on his life, is often overlooked by the many systems that have been put in place by the government to support him. These systems include the NDIS, the health system and

The Department of Education, both for his preschool/early intervention years, and now in his primary school years.

We have experienced so many disappointments, acts of discrimination, and failures at many levels accessing the

appropriate levels of support we need for the development of our son’s abilities, it is hard to know where to begin. |

understand this is a lengthy statement, but | want to describe and give a full picture of our experiences

| am also happy to state that as a result of the support and advocacy of both ourselves and the many professionals

and paraprofessionals who support our son, with therapy supports accessed through NDIS supports, education at both specialist and mainstream schools, extra-curricular activities and intervention, he has achieved a significant amount of progression in his intellectual development, and his abilities. Without all of the support, therapy and intervention my son has received, he would not be blossoming into the happy and increasingly capable boy he is

today.

There is still a long road ahead for my son, he takes a significant amount of time and needs a significant amount of

support, to learn the many skills, he will need to navigate his way through life as independently as he possibly can.

It shouldn’t take so much advocacy, it shouldn’t be a battle to get my son the supports he needs, | shouldn’t have to

spend hours preparing each year, to prove to departmental offices, and the assessors in the background, that my son

needs these supports. | shouldn’t have to be fraught with worry each year when the time comes around for the review

of my sons supports. My sons future life outcomes are often in the hands of those who have never, and will never have the pleasure of meeting him, or his family, they may not understand the triumphs and struggles a family of an autistic person face throughout life, and therefore, they are not always in the best position to make decisions that have

such a significant impact upon an autistic person’s life.

And it is up to us his family to continually advocate and remind those who make the decisions for his supports and those who are trusted with his care, nurturing and education, that he is an individual, and a young person with rights and needs…who doesn’t just need to be dealt with or taught, he needs to be nurtured and understood, included and

treated with dignity and respect.

Address | City, County/Region, Postcode

At this stage in his life his education is in the hands of teachers who do not have the skills how to teach him, and education support staff who have had no formal training or any real understanding of how my sons autism affects him as an individual, or how to interpret his behaviour as a communication of his needs.

It is left in the hands of his family both in the organisation and financial capacity, and of the caring and capable therapists and professionals who understand him so well, to fill the gaps in the capability of the educators and education support staff at his school, as the NDIS will not fund supports that are the responsibility of the education department, and nor should they, the department of education needs to do better for autistic students, supports need to be as individual as the autistic students they are intended to support, as each autistic student has individual needs and no two autistic students are the same. My sons PSD allocation covers the cost of an education support worker, and that is it according to the school, which leaves the costs associated with developing the staff and for extra supports like consultations with behaviour analysts, speech therapists and other professionals to be covered by parents or taken from other areas of the school budget(which most schools are unwilling to use). Most schools don’t see the value in having consultations and having staff professionally developed for one or even a small portion of the student body, therefore schools end up in the same cycle of discipline and exclusion and autistic students like my son remain to be the collateral damage.

There are several systems that are in place which are intended to support my son, our experience within these systems always involves bureaucracy, constant evidence and constant battling to support my son adequately, how those systems could to support my son (and us his family and primary carers) adequately to develop to his full potential involves addressing:

The diagnosis process and accessibility to early intervention, this includes the ability to access funding to diagnose young children in a timely manner, and given the nature of the child’s autism, access to funding and supports that are relevant to that child.
Supports in early childhood settings, and their need to be targeted towards the children who need the support, including the capabilities of early childhood educators, and the attitudes they have towards profoundly autistic children and their capacity to learn.
The process of asking for a one-year exemption from entry into school for our son to have a second year of preschool and attend intensive early intervention and the uncertainty of the process for his family.
The school enrolment process, the issues with gatekeeping at public schools and the use of the “local school loophole” in the disability discrimination act, that takes away a parent’s right to choose when looking for a suitable school for their autistic child.
The red tape involved in accessing PSD funding for students and the autonomy given to schools to use funding that is there to support students learning at the schools discretion, most of PSD funding is directed towards the wages of education support staff, who are not always formally qualified, and schools tend to take the extra funds and place them into the schools pool of funds, without using them to fund any other kinds of supports for the students the funds were intended for.
How at times schools simply see a student’s disability as a pathway to extra grants and funding, extra supports that end up going into the school’s budget, or to build a new playground, and not used to help the students, or for developing the abilities of teachers and support staff who are struggling, for whom the extra funding was intended for.

The lack of willingness mainstream schools have to assist students who have continence needs, and their poor attitude and lack of understanding towards providing this kind of assistance to students, particularly for students who have not yet become continent for their bowels and, end up needing assistance to clean themselves, are autistic and have sensory issues that affect their ability to interpret bodily sensations, where their disability is not as apparent or of a physical nature.
The issue of schools being given the freedom to govern themselves, and the education department governing the education department, there is no independent body doing checks for relevant individual learning plans, student support group meetings, and students safety plans. Many schools simply don’t prepare these plans until parents or advocates insist upon seeing them and being part of the process. There is no system in place in mainstream and specialist schools to be answerable and responsible for poor educational outcomes and lack of literacy and numeracy skills in students with autism and learning disabilities.
The lack of Department of Education Policy to effectively give students a formal exemption from school for a full day in order for autistic students to attend intensive intervention and therapy, there is only a formal exemption for students who are in the entertainment industry, or students who are leaving school completely to start and apprenticeship. The NDIS will not fund supports that need to take the place of a school day without an exemption, even though such an exemption does not exist, they asked me to obtain one in order for them to approve my sons full 9 hour ABA program, that was professionally recommended for him, a pointless task that took weeks to navigate and complete, only to find that one did not even exist.
The lack of a meaningful hierarchy of contacts within the education department for parents of autistic and disabled children to turn and report to, report issues of serious incidents and of neglect, should their child’s school not be fulfilling their obligations to include and educate their children, adhere to policies and uphold their right to an education.
How autism is not understood by educators to be something that is beyond the autistic individuals capability to control, they do not understand that autism is not simply something that can be changed with therapy, you wouldn’t expect a student with a hearing impairment to listen to you, you wouldn’t expect a visually impaired or blind child to see something…so why do we expect our autistic children to simply be in control of their behaviour? students with autism are being left behind in schools by teachers who see their autistic traits as bad behaviour, because they do not understand autism and have no real and meaningful education on how to teach and communicate with autistic students, nor understand them as individuals with individual traits.
The NDIS and our long wait for our sons intake into the NDIS, the struggles our ECEI case worker had in getting all the supports our son needed in his first NDIS plan, and the battle to have his second plan reviewed to include all of the supports he needed. (including our need to have our local MP intervene on our son’s behalf and the long period we had to self-fund our sons ABA therapy)
The constant issue of deciphering which department or support system is responsible for supports for my son, between the NDIS, The Department of Education, Medicare and the public health system.
The gaps and insufficiencies within the health and dental system where health and dental related costs that are directly related to my son’s disability, are not supported by the NDIS or supported within the public health system at a meaningful manner that would support a better health outcome for my son.
The lack of awareness and support when accessing diagnostic tests like blood samples and X-rays, the lack of communication resources that are available at pathology, Xray providers, doctor’s surgeries and dental clinics for my son to understand what will be happening to him when he undergoes any procedures.

The need for profoundly autistic children like my son, to have access to swimming and water safety lessons, with instructors who are qualified and skilled to teach autistic students, that replicate or take place at many different aquatic environments, so their skills can be transferred across different environments, in order for them to have the skills to be safe around all types of bodies of water. The drowning statistic for autistic individuals in Australia is shocking and needs to be addressed. https://www.autismawareness.com.au/news-events/aupdate/drowning-and-asd/ https://autismswim.com.au/wp-content/uploads/2018/04/Drawn-to-Water-Swimming-lessons-for-children with-Autism-T-1.mp4? =1

My son has attended, childcare, 3 year old pre-school, two years of 4 year old pre-school, in his foundation year and up until COVID became a concern, he attended both mainstream and a specialist school with a dual enrolment, and is currently attending primary school at a specialist school in grade one to reduce his exposure to only one community of students and teachers. I will inform you of the many challenges, failures, developmental gains and outright acts of discrimination we have faced so far starting at his time in childcare, then his diagnosis, challenges at preschool, entry into the NDIS and finishing with his enrolment and experience in the education system to this date. I will include in italics what would have been helpful at the time to provide you with an insight into how to improve these systems, I am unaware of any changes to the diagnosis system or preschool supports since my son was in those systems.

Our son started attending a local childcare centre at age one, after his first year attending it began to become apparent that he was not developing like the other children, as parents we were still coming to terms with what we were faced with regarding our son, some of the staff at the centre lacked any kind of empathy and understanding about this, and we faced continual scrutiny each week when we dropped him off and picked him up. We understood at the time how important it was to keep him in environments where he was with children his own age, and part of a structured early childhood setting, but we constantly felt conflicted, we knew that having him in that environment was beneficial to him, some of the staff were uncomfortable in his presence and those staff didn’t treat him with much of a kindness while he was in their care. (this feeling remains with us to this day in some environments we are required to leave our son in) We were constantly hounded about “what we were doing” about our sons deficits, I began to ask which staff were working and when so I could change my sons day, to a day I knew that understanding and competent staff were going to be caring for my son at the centre. My son being only two and a half years old at the time was not in the age range for a diagnosis, but that didn’t seem to matter to some of the staff who seemed to have a genuine belief that we were failing our son somehow in order for his development not to be progressing. Of course we were concerned, not only were we primarily concerned for our son, we didn’t know how we were going to pay for all of the intervention he needed, who were we supposed to see to get a diagnosis?, a paediatrician costs over $150 per visit, with the first visit costing over $300, speech therapy is $80 per session…with a $250 first consultation assessment fee, we could have gone on the waiting list in the public system, but he had to be three years old and the wait is up to six months. We had so many questions and we didn’t know who to turn to for honest and sound advice, we wondered how to support our three older children when he will need so much help. We were drowning with anxiety about it, along with coming to terms about how the rest of the world would treat our son, we see his autism as a part of who he is and we love all of those parts, but we understand how society can be, and how navigating the world and living in it would be hard for our son, hard for us having to advocate for him, and hard for his siblings having the smaller portion of our time

in order to help our youngest son reach his full potential. For the most part not any of the doctors or professionals we had seen, including his speech therapist and occupational therapist, had asked us how we were coping, nor did they think to refer us to talk to anyone about it. We decided that we wouldn’t go ahead with a diagnosis after a quick consultation with our GP, who informed us that we should wait until he was a little older. We kept him in childcare and felt liberated by our decision not to diagnose our son, but to do our best to give him the supports he needed, this included staying at childcare where he would be with his same age peers in an early childhood setting, and we started taking him to speech therapy, we could only afford to take him for a half an hour each fortnight, we were doing our best with what we could afford to give him at the time. The biggest barrier we faced were financial supports, and the inability of our GP or anyone we asked to assure us that our son would be able to achieve development through therapy. What could have improved our situation at the time would have been to be able to access supports to have our son diagnosed, in a timely manner…parents shouldn’t have to be left wondering, worrying, blaming themselves and anxious about the future of their child, while assessors in offices who have never encountered them or their child, decide they will provide supports and help with the intervention their child so desperately needs, filled with concern that the amount of supports they will get may not be enough to help their child in a meaningful way. 20 sessions of therapy annually, is a drop in the ocean when compared to what my son needs to help him in an effective way. The NDIS has addressed this issue but is still falling short for many children who are remarkably autistic like my son. To have the manager of the childcare centre able to refer my son along with our GP for consideration for diagnosis, rather than having to see a whole range of allied health professionals, which takes time, time in which parents are distressed, and in unfamiliar territory, would have been better for our son and our family, as childcare staff and parents are often the first to observe these early signs. It would also have helped if the childcare centre had a policy or guidelines from the DHHS about how to best support parents through initial observations and early signs of autism.

Then came time for 3-year-old kinder, we felt this would be another early learning environment that would benefit him, we were upfront with the kinder teacher about our sons’ developmental concerns, and he began attending 3-year-old preschool. We had recently been able to afford his speech therapy once per week and had begun to attend occupational therapy by this time also. Both of his therapists were experienced, and we were confident in the strategies and type of therapy they were providing for our son. The teacher like the staff at childcare made me feel like I was doing my son a disservice by not having him formally diagnosed, even though he was in two types of intervention, after a discussion with the preschool teacher it became apparent that the real reason behind the push for a diagnosis for my son was so they could apply to have an extra worker in the room while my son was attending for 2 and ½ hours per week, and to quote the teacher “the help isn’t just for him though…it’s for the whole room, the assistance is for everyone, and not for the individual child”, upon investigating this matter further I discovered that the chances of the preschool qualifying for assistance were very small, and that I would still have to undertake the organisation of the diagnosis process myself, without any guidance or support from the preschool. So in a nutshell I needed to organise for my son to be assessed, which was either going to be very expensive or take a long time, with a condition that was blatantly obvious, for which he was having intervention, all on the slight possibility of the preschool getting an extra helper…who was in fact not in the room to help my son. It became clearer over time and interaction with the preschool, that this was not intended to help my son, and the preschool saw his attendance as an opportunity to get extra staff or apply for grants, none of which seemed to be directed towards assisting my son in achieving his developmental goals.

I began to see how my son was seen and treated as burdensome in the room, constantly being told upon pick up that my son lacked interest in the activities set up in the room and being complained to about his need for assistance with toileting. I was called to pick him up at one session during term two via voicemail with his teacher snapping into the phone that they had changed him twice already in the session, and that I would have to come and get him, because they wouldn’t do so again that day. Upon arrival the teacher hadn’t noticed I had entered the room and I witnessed her snapping at my son when prompting him to clean himself up after visiting the bathroom, storming around in the bathroom area…clearly seething at the need to help my son. How awful that must have been for him, to be humiliated like that, by someone who is supposed to nurture him, an educated professional who I had trusted with my son. I didn’t take him back for several weeks after that, the matter was never formally acknowledged by the preschool or the teacher, but after I addressed this as my reason for not returning for several weeks, his continence was not mentioned again as an issue, and I believe the teacher recognised her behaviour as unacceptable. As awful as the behaviour of his teacher was, I empathise with her, she was unfamiliar with and had not encountered a profoundly autistic child before. She had no support from the preschool management…who rubbed their hands together at the “opportunity” our son brought to the preschool. She didn’t know who to approach to seek help, very little departmental and government help was available to her and unfortunately, she placed the blame, burden and all of her frustrations, on to my son, and to us his family. Due to the short hours my son attended 3-year-old pre-school, her and my sons’ opportunities for assistance were only slight, even though there were clear benefits to his development through attending. I am also pleased to say our son benefited from attending his local preschool, he still participated in parts of the sessions, engaged in play based learning activities, we still encounter children he went to 3 year old kinder with to this day while out and about in the community, who come over to say hello and ask about how is going and what he is up to, it continued to form his connection to his community, in a sustainable and meaningful way. And when he sees his kinder photo album along with his older siblings, and sees himself with the same teachers as his siblings in the photos, and while he attended the preschool, it cemented him as a part of his family in every sense…not separate because he’s different, not excluded from anything because of him autism.

Then came the time to formally diagnose our son as autistic, we didn’t want to be waiting long and we wanted to have the input of the therapists who were already working with and who knew our son so well, we sought the help of a reputable paediatrician, and her advice, kind words and support we still feel and remember to this day. That appointment was a turning point for our entire family, she was confident and clearly experienced with autism and knew the exact steps we needed to take, who to call, where to apply for funding for supports, she told us what supports we could get, and what we needed to do to access these supports. She wrote everything down for us on a piece of paper, a piece of paper that was invaluable to me at the time. That piece of paper told me approximately how much his diagnosis would cost for each appointment needed so we could budget for it. And most importantly, she told us that we had been doing the right thing, she reassured us that we had been supporting our son’s development, and that we had not let him down. She told us that it wasn’t going to be easy and reassured us that she was there to guide and support us through it, words I had been so desperate to hear for so long. She also advised us to consider ABA therapy, given that speech and occupational therapy had only taken our son a short way into achieving his developmental milestones, and recommended it as therapy that is much more intensive and better suited to help our son, the most valuable advice I have been given. The diagnosis process was still distressing for us, even though we knew what the outcome would be, we had to save and thankfully, family offered to help financially in order for us to access the therapy our son needed, due to the profound nature of our sons autism we knew that he would need to be in intensive therapy for years before we would see him develop, and HCWA and the Medicare funded sessions were not even close to adequate to address our sons needs, and we couldn’t use them for his ABA therapy.

To have your Childs lack of abilities shown in reports, graphs, and given a depth of severity, with no real plan about how or even IF your child can be helped to develop, is distressing for parents. Recognition of their child as a person, and not just as a dot on a graph or a case number, would be a great start to humanising the assessment process, and recognition that one day perhaps as an adult this person will read the reports written about them. Not one of the therapists reports about my son talked about his traits as an individual, his resilience, or his willingness to give things a go, his testing identified no strengths, only deficits. This process of making him a case was the beginning of him not being seen as a person by the departments of government services who were put in place to support him, and those departments need to be constantly reminded that he is a young man, who has a life, who has a family. His therapy shouldn’t only be viewed as part of a balance sheet, because it makes such a difference to the parts of his life that cannot be measured on a graph, but make a difference to his overall sense of himself, they give him confidence in his abilities, and a notable confidence in himself. We have had to endure assessments required for supports at school, and the process is still distressing for us, no one wants their childs shortcomings listed on a report. We still have to remind ourselves each year, that those reports do not describe our son as a person, and that they only represent a part of who he is, it’s such a shame that neither the NDIS nor The Department of Education seems to recognise that.

It was towards then end of his time in 3-year-old kinder we started taking our son to ABA therapy. Our experience in ABA therapy has been the most beneficial for our son, given the profound nature of his autism and the intensive and targeted manner in which ABA addresses his needs. There are many aspects of the way in which supports both us his family, keeps us informed and includes us in the development of his therapy programs, that makes it the absolute best intervention for our son. These things include:

 Having a child and family centred approach to assessments, and the continued consideration of my sons and his family’s dignity when discussing his progression, behaviour programs and overall development.  The experienced expertise in autism and knowing the ways in which things can be altered so our son can learn.  Having regular meetings (every 40 hours of therapy) to assess and discuss any changes in behaviour, the need for new programs, and to give his family strategies and advice.  Having his assessment meetings to include celebration of his achievements, and to determine any new steps involved in his therapy programs, keeping his family involved and informed every step of the way.  The repetitive nature of the therapy was what our son needed in order to learn the foundational skills like imitation, recognition of everyday items and labelling them among many other things.  ABA therapy is the only evidence-based intervention that was specifically designed to help autistic people.  The progression we have seen in our son has been more evident since we started taking him to ABA, even within the first months of him attending we could see subtle changes in his behaviour and in his overall understanding of things.  The therapy was empowering for our son, because he could sense his understanding, his skills and his abilities progressing.  We began to be able to interpret and understand his behaviour as a communication of his needs, we learned from his therapists and program supervisors how to identify environmental factors that contributed to our sons behaviour and how to strategize and help our son cope.

Four-year-old kinder was not very different from three-year-old kinder, the big difference for us was that had 12 hours of assistance from in the form of an assistant in the room. Again, his teacher had not encountered a profoundly autistic student before, and again she didn’t know how to communicate with him, or how to engage him with any of the activities in the room, or how to adjust the activities so he could learn from them. In her own time, she attended ABA program meetings and tried her best, but again she had no support other than what we, his family, could provide. The extra assistance in the room was provided by an assistant who had no formal qualification, who was physically unable to keep up with the demands of my active son, she was a lovely person, but she fell short of the skills my son required to support him and the support his educator needed. Her peers at the preschool were out of their depth and could offer her no advice, and when faced with the request for an extra year with my son (so we could have him in intensive ABA for another year) she began to sabotage any attempts we made in order to keep our son at the preschool for another year. Having to hear statements from her that were offensive towards my son was distressing, comments such as:

   “before I was here, I was in the private education sector, and children like       were weeded out in the

application process”

   “he’s not toilet trained, he’s still not talking, and I can’t see how he can learn anything…so what’s the point in               -

him being here, I can’t see the point in another year”

So we decided to approach a different preschool, and enrol him elsewhere, part of the way into the process of requesting an exemption from school to attend an extra year of intensive therapy and preschool, taking another year for therapy was recommended to us by the clinical director and his paediatrician, in order to maximise his therapy hours during his early intervention years. The application process for a second year at preschool has many flaws:

 There are no clear instructions for what information is required, both for parents and educators.  The application takes a long time to process, and at the discretion of the department of education, goes to a panel to determine. I was told I may need to wait until after the Christmas holidays, before it could be determined whether or not my son, would be attending school or preschool the following year.  The fact that my son’s exemption and need for second year of preschool and more intensive intervention, was recommended by his paediatrician and a psychologist, and his speech therapist, should have been evidence enough of his need for an exemption. But it was not, and we were forced to make both preschool and school an option for my son the following year, which is clearly a huge undertaking given the extra efforts it takes to enrol a child with disabilities into school and preschool.

Not one of the education department staff we were in contact with at the time took into account the uncertainty we faced, not being able to prepare ourselves, our child’s therapists…or most importantly our son for the following year, how is this acceptable??

Fortunately after advocating for our son, he was given an exemption, and he reaped many benefits from the extra year of intensive intervention, and from the extra year of preschool, where they had an inclusion policy that they acted upon, where inclusion was simply a part of what they did, and was welcomed into the room, included and nurtured at each session he attended. Much better for our son than having him educated by someone who didn’t see the point in him being there.

We decided to enrol our son in both a specialist school for three days, and into a mainstream school for one day per week. The other weekday he would remain in his necessary ABA therapy for a full day.

We enrolled him in a specialist school because they have the training and qualifications to be able to teach our son the curriculum, and we enrolled him into the same mainstream school his siblings attended, to keep his connections to his local community (many of the children he attended his first year of 4 year old and three year old kinder with also attend at this mainstream school). Enrolling him in specialist school was streamlined, the staff knew exactly what to do, what plans to make, and their expertise, organisation and approach to educational guidelines and policy has been exemplary. There have been no barriers to my son’s participation in any aspect of his schooling at his specialist school, assembly and perceptual motor program days were adjusted so my son could be present and participate. His mainstream school however needed reminding of their obligations to my son, reminding of Department of Education Policy, and prompting to treat him with the dignity and respect he deserved. He was placed into a classroom that had no access to a suitable bathroom for him, as he still needs continence support. The school had recently had a ceremony and had gone to great lengths to convert an area of the school into the junior school building. The problem with this being there was no disabled toilet located within or anywhere close to this building. The school couldn’t take him to the toilets located next to the junior school building because staff were not permitted to enter the student’s toilets alone with a student in compliance with the royal commission recommendations for the child protection act. So my son had to travel almost all the way across to the other side of the school in order to have his continence needs looked after, and have someone from the office present in the bathroom in compliance with department policy. The education support staff had also refused to agree to assist my son with his continence needs, stating that they simply wouldn’t help clean him up because it’s not in their job description. The school then proceeded to negotiate that I would have to come to the school and clean him up when he soiled himself, I contacted the Association for Children with a Disability, who informed me that it was Department of Education policy that they do so. I was not going to have my son sit in his own faeces, excluded from the classroom and left to wait until I came to help him, it still shocks me to this day to think the school would find this acceptable. Upon addressing this very point with the school, they quickly complied and made no further issue of the matter that school year, I contacted The Department of Education, but they didn’t seem to know who I was supposed to report this to and advised me to take it up with the school…the very school who had attempted to treat my son with little regards for his dignity. At the beginning of term three I received a chilling phone call from his mainstream school, the school reported to me that for an undetermined amount of time my son had gone missing from his classroom, and he had managed to find his way into the wetlands that were located alongside the school, upon sighting my child entering the wetlands a teacher from another class alerted his teacher and education support worker of this and they managed to retrieve him from a body of water he had entered, fortunately he had not fully submerged into the body of water (he was neck deep when they located him), and only by sheer chance had he not come to any serious harm. Please consider the seriousness of this incident:

He wandered out of his classroom, or away from his education support worker (the school has been evasive about the details)
no one was keeping him safe
No one who was responsible for his care noticed he was missing 9

He was clearly headed towards an unsafe and potentially dangerous area, and no one approached him to stop him…they went and got someone else, wasting precious time that could have been used to keep my son safe

The school had clearly not planned for my sons care appropriately, and none of the relevant documentation to ensure that continuity of acceptable standards of care were in place for my son, this was evident by discovering:

No other staff members were confident or effective at communicating with my son, other than his usual education support worker, who was on leave at the time
There was still no student profile, safety planning or documentation exchanged between staff that set clear procedure or policy for communication, wandering behaviour, and protocols for his safety.
In the initial phone call from the assistant principal, I was made aware that my son had often tried to go into the wetlands and that his regular education support worker had made the school aware of this, the school still however did not document this, this information was made known to other education support workers who were responsible for his care, however the education support worker responsible, for his care at the time of the incident, and his classroom teacher, claimed to have had no knowledge of this

I made myself available to the school to help make sure this did not happen again, as distressed as I was, I was still willing to work with the school, to learn from the incident and move forward. The school then proceeded to protect itself, I was not included in the meetings that followed, I have never seen an incident report, and I have not seen an updated safety plan, I was given a cut and pasted behaviour management plan, that was adapted from another students, with the previous students name still in parts of it…the school clearly wasn’t taking this incident seriously, and they tried at times to place the blame with my son and his autistic behaviour, rather than assume their responsibility to keep him safe.

To add to this experience, when time came for the annual school Christmas concert, at my sons mainstream school. I like the other junior school parents, along with my family presented with at the concert and lined up with the rest of his class, his teacher had of course not taken him to any of the rehearsals for the concert, and he did not even

have a prop for my son to hold…every other student in his class had a part to play, except         there was no              -

support person there for him and I was told I was not allowed on stage to guide him, even though he didn’t know what he was supposed to do. And finally on the subject of my sons experience in education, last term I attempted to investigate an alternative mainstream school, upon contacting another school in the local area about a part time enrolment for my autistic son, the school in which I enquired proceeded to contact our current mainstream school and enquire about my son, apparently as a professional courtesy to his current school. At no stage did the prospective school ask my permission to discuss my child with any outside party. Upon hearing about the profoundness my sons autism and his disability, the prospective school I had enquired at, made a change in its welcoming behaviour of a new enrolment, and proceeded to claim they had no availability for new enrolments outside of their current school zone, and proceeded to deny my children the opportunity to enrol at the school. The use of “the local school loophole” is a common practice in a discriminative practice known as gatekeeping, a process that involves school principals, denying students enrolment at their school based on their disabilities. This happens often to parents of autistic children and takes away our opportunities to choose the most suitable school for our children, and the practice of principles doing this is protected by the statement of “local school” in the disability discrimination act.

He is now attending full time at a special development school, where we know he is included, nurtured and safe, regrettably, his ties and interaction with his peers from his local community will be affected and reduced to encounters at the local shops, and chance encounters at the park will be the only opportunity our son will now have to see his peers within his local community, he will no longer feel a sense of belonging with them as a part of is local school community, when he sees his school photos compared to his siblings, he will not be wearing the same uniform, and he will forever be that little bit different from his siblings.

My experiences with the NDIS who for both of the support plans my son has had has:

Taken extended amounts of time to become available to use, including taking up to 3 months to have our first planning meeting, and another 2 months to have my sons first plan approved and made available to him to use.
Fallen short in his second plan and cut his funding for ABA therapy by two thirds, not taking into consideration his need for intensive therapy, not considering ABA therapy to be the most suitable for him…as has been stated by his paediatrician, GP, speech therapist and psychologist. Reduced his speech therapy support and occupational therapy support to be delivered by a level two therapy assistant and not a qualified therapist
Taken extended amounts of time to review, and even requiring intervention from his local MP to rectify.

• Not taken into consideration the financial burden that was placed upon his family, who self- funded his -

therapy at $700 per week for the 4 months it took for his review to be approved.

Not taken into consideration the profound nature of my sons’ autism in considering the kind of supports he needed
Disappointing to experience my sons capacity building supports being reduced to a balance sheet, placing little value on his outcomes and more emphasis on a value for money option, without considering that investing in my son now, in his childhood years, will mean he will need less support as an adult, and become more independent as he develops the ability to do so in his formative years.
Asked me to obtain a school exemption for my son that didn’t exist within the education system, which left me with little hope of my son getting NDIS to support his ABA therapy, I instead obtained had my sons absence from school considered reasonable and supported by his school principal, which was the only option available to us. Why the NDIS didn’t know this is unprofessional, and to require me to obtain a document, to fulfil a requirement that I couldn’t fulfil, was a failure of the NDIS system to competently support my son. It should be noted that upon advocacy and the intervention of our local MP , my sons plan was

reviewed and updated to include all the supports he needed, and was done so in a timely manner once ■ offices contacted the NDIS on my sons behalf, but it shouldn’t come to that, it shouldn’t be placed in the 1111 -

hands of others to govern and assure the NDIS fulfilling it obligations to its participants. And I should also mention that my son has made many developmental gains and, has learned many new skills as result of his NDIS supports, the system does work…it does however unnecessarily take advocacy, persistence and a huge amount of anxiety and effort for carers and parents to get the adequate supports for their Autistic children.

I have also identified a gap within the public health system, that relates to the dental care of my son. My son can tolerate a dental check-up, and the cleaning of about four or five teeth in the chair before his autism gets the better of him, and we have to finish our appointment. This means that if he requires dental procedures, he is required to have them under general anaesthesia. This is not covered under his Medicare dental allowance, and can be treated at the dental hospital at the special needs children’s clinic, however the waiting list varies from 6 month to 2 years. Can you imagine, having a toothache, not being able to effectively communicate or understand what may be happening to you? And having to wait for a long time to have this treated, and not knowing what these strangers were going to do to you? That is the reality for our autistic children…unacceptable to say the least. We just paid $3000 to a paediatric dentist to have:

A clean
Two fissure seals
One filling
And one crown He had these procedures under general anaesthesia, at a private hospital, because we didn’t want our son to have to wait while his teeth got worse for him to get treatment, our two options were, 1) wait a long time in the public system or 2)pay privately…we choose the second option for the sake of our sons health, we had no other choice, even though his need for such a procedure is directly related to his disability. We need to have extra dental supports in place for our autistic population, because many autistic individuals simply avoid the dentist, they have distressing memories and experiences with dental procedures, and there is only one, over booked place where autistic individuals can access dental care under the public health system, under general anaesthesia, which is the least distressing option for a person who is autistic. This needs to be addressed within the Medicare system or within the NDIS.

Hospitals and the accessing healthcare can be confronting for my son, doctors’ visits and testing procedures need to be carefully planned for, as most places have no non-verbal or AAC assisted capacity, nor the know how in any meaningful way to communicate with my son. We constantly need to remind staff at X-Ray rooms and pathology, that our son needs alternatives and understanding, we are constantly sent to other specialists and special needs clinics, or we have to teach him tolerance, and provide step by step education for the procedure ourselves, along with the help and advice of his therapists, in order for my son to understand and sit through and cooperate in a simple dental x-ray, or have a blood test taken. This needs to be addressed, doctors’ clinics, dentists and hospitals need to have policies and protocols in place to support autistic individuals, and alternative means of communication. My son is statistically more likely to die 30 years younger than someone without his disability, and I can see why;

He can’t tell me if he is feeling unwell
If he is sick we don’t know unless he has a high temperature, runny nose, or is vomiting
Due to his sensory issues, if something within his organs is painful, or sometimes if he has been injured he may not recognise the signs and the problem could become worse and even critical before it is identified

We need to be vigilant in our observation of our son and investigate any behaviour he displays that may be an indication of him being unwell seriously, however trivial it may seem, because at this point in his development he cannot communicate effectively with us about his health and wellbeing.

I would like to thank the committee for considering my submission and thank them for taking the time and the initiative to make life better and equitable for my son, and for autistic individuals across the country.

I would also like to add my support for a national autism strategy, that involves the integration of ABA therapy into schools across the country. And the integration behaviour analysts into schools in order to consult with teachers and education support staff to support autistic students to reach their full potential at school.