Submission to the Senate Inquiry into …..

During August 2015 I, and many others, have made submissions to our countries government regarding issues that face disabled students accessing education in an appropriate and meaningfully inclusive way, as part of an inquiry they have commissioned. This is a copy of the submission I made. 

This post will not appeal to all readers, but if you are interested in advocacy for equal education rights for all children, you might find it interesting.

If you are interested in this issue, you may also like to read (links will open in new windows):

Submission made by Autistic Family Collective
Submission made by C. Malaquias

Submission to the Senate Inquiry into Current levels of access and attainment for students with disability in the school system, and the impact on students and families associated with inadequate levels of support, written by Michelle Sutton. 

September 2015

Dear Committee,

I am writing to express my thoughts and concerns about the public education system in New South Wales and its accessibility to disabled students, based on our family experience accessing the public education system in NSW.

First, a little history.
I am part of family of eight, six of whom have been diagnosed with disabilities. Between my husband, our 6 children and myself, we have diagnoses of Autism Spectrum Disorder, Bipolar Disorder, Sensory Processing Disorder, Sleep Initiation Disorder, Generalised Anxiety Disorder, and Depression.

I am a trained teacher (B. Teach E.C) and have experience working in Long Day Care (in teaching and management roles) and Public Schools. I have a Graduate Diploma in Psychology, have done a course of study in Mentoring and have almost 5 years experience in a volunteer capacity as a mentor/counsellor and support group facilitator to parents of Autistic children.

My efforts to advocate for my children’s support needs when accessing public education began in 2012 as the “Every Student Every School” funding model was introduced by the NSW government under Mr O’Farrell. I sent letters to Members of Parliament (a copy of which can be found as an appendix). My letters were met with silence or a form letter style response. I met with our local MP at the time, Ms Roza Sage, to discuss my concerns. My discussion with Ms Sage concluded with Ms Sage shrugging her shoulders and replying “I can tell them” when I requested she advocate for our community by taking my specific concerns about the impact the funding changes would have on my son and his peers’ ability to attend school to her colleagues. At this point I concluded I was wasting my time talking to politicians, and decided to focus my attention on advocating for my children’s needs at their schools. However, there is only so much a school can do within the current education model and with ever decreasing funds.

In this submission, I would like to address five specific issues:

  1. Strategies used in schools to manage behaviour
  2. Academic achievement as a measure of success
  3. Funding
  4. Inclusion
  5. The experts

1. Strategies used in schools to manage behaviour

The school system is set up in a way that relies on compliance to work. Everything is on a schedule: even eating, drinking and bathroom use.

If you are a disabled person who finds it difficult or undesirable to comply it is likely that you will do things that will be labelled as “problems” or “defiant” or “troublesome”. You are likely to be subject to a behaviour management technique known as “Positive Behaviour Support” (PBS) in which teachers identify, track and log “problem behaviours”. This is done on an individual level and on a group level.

Problem behaviours can include simple things like talking when you aren’t “supposed” to or asking for bathroom breaks at “inappropriate times”. These are things that are generally approached at a group level with class rules (or expectations). Children are expected to comply with the group expectations. Compliance earns rewards in the form of stickers and certificates publicly presented. Non compliance is met with some sort of consequence, that often involves shaming the child (being called out in front of the class, staying back during break times, having points removed, or having your name written on the board).

For disabled children conforming to these standards can be very difficult. Sitting still when you are a person who cannot concentrate unless fidgeting makes meaningful learning unattainable. Keeping up with the class when you are a person who cannot concentrate for longer than 10 minutes is impossible. Asking for a break for the purpose of self regulation is frightening for a child who knows the expectation is to not interrupt and to attend to what is in front of you, but not asking for a break is counterproductive. These are all issues my Autistic children have faced in classrooms. My daughter often told me she was too tired during the day but had to keep trying. This saddened me as I knew she could cope much better if given regular breaks, but this was seen as disruptive. My son needed to stim (fidget) to keep focus but if he did he was told to be quiet and he became increasingly aware that other students identified him as “weird” and became comfortable targeting him because the teacher drew attention to his behaviour. The things my children needed to do as coping strategies were deemed inappropriate, even though they really didn’t harm anyone.

Sometimes problem behaviours, like aggressive behaviours, are a challenge that children need support in resolving. However, often in disabled children these behaviours are misunderstood as rebellion when they are in fact a means of self advocacy. The teachers look for patterns, then devise solutions for the kids to comply with. They do sometimes change the environment or schedule (this is when it can work well), by my experience is usually that they teach the kids a strategy and provide a reward for compliance with the strategy the teacher desires.

We really need to consider what this is doing to children. If PBS does what it says it will do, and eliminates unwanted behaviours, what is the cost to the child? Who gets to decide which behaviours are unwanted? What if, for example, the behaviour identified is a coping behaviour? What if it is lashing out at kids in the playground, when usually the child is quiet and “well behaved” in class? The teachers might see that and think because it occurs in the playground it is being caused by something in the playground (a reasonably logical assumption for many kids). What if the real cause is in the classroom and the child involved has been holding it together in the classroom because the rule there is ‘be quiet and concentrate on your work’? The teachers might be insisting on the wrong change. Then when that doesn’t work they slowly but surely revert to strategies like shaming and punishment without looking further. The child becomes overwhelmed then and shuts down. The behaviour stops. The PBS is deemed effective. The child is traumatised, but now there is no behaviour to track, so no one notices or cares. Backs are patted and outcomes are achieved. A reward is given. Inclusion and mainstreaming are deemed successful. Celebrations all around, but what really happened was a child was broken.

The problem with many behaviour management strategies is they are done to the children and for the benefit of the teachers. Learning should not be done to someone. Teachers are seen as gatekeepers, not partners. If the student doesn’t do it the teachers’ way they are “wrong”. The teacher is not seen as having an obligation to figure out how to do it differently to support the child, the child is expected to respond to being shown how to do it the teachers’ way, then become “successful” using the strategies imposed on them.

In my son’s years in school he had one teacher who really understood that. My son flourished in that class. He loved it. It was the best year ever for him, and every year at school after that was a slide further into frustration and anxiety until we pulled him out last year in favour of homeschooling.

2. Academic achievement as a measure of success 

My Autistic son has sat through all the expected assessment procedures schools administer, including NAPLAN, and has achieved well throughout. This does not mean that his time at school has been a success. In fact, my son’s academic success has been used against him as it has been cited as a reason he does not need support. This reasoning fails to acknowledge that students do more at school than learn academics. For Autistic students schools are a minefield of sensory and social challenges that go unacknowledged. In my Autistic daughter’s case the sensory and social challenges caused her such significant problems that although she managed to maintain her composure at school almost every waking hour outside school in the last month of her attendance before we withdrew her in favour of home education were spent in either a state of shut down or a state of meltdown. Her teacher was surprised when we withdrew her, because she was “achieving so well”, but the cost to her was so great that she could not function effectively anywhere else due to the amount of energy and coping skills it took for her to survive the school day.

Conversely, assuming a student is not benefiting from attending school because their academic results are not “good enough” is also a danger. All people benefit from being included with their peers and making an academic contribution is not the only way a person has value in a learning environment. We all have value, just by being present. School is a place where children learn so much more than academic skills, and the presence of a diversity of students is valuable for everyone.

Focussing on academic achievement also fails to take into account effort. Teachers assume high achievement equals high effort and low achievement equals low effort. We know this not to be true. In my family, I have one son who barely tries and achieves top marks, and one who tries so hard he exhausts himself, but still can’t “keep up” with his age peers. There is no acknowledgement that high effort can still result in not meeting goals set for you by other people who do not understand your individual challenges. When my son stopped attending the local high school he was enrolled in the school of distance education for 2 terms. During this time he achieved well academically, but received a number of warning letters because he was not returning work at a fast enough rate. He needs about 3 times as long to do the work as other students do. He understands the work and completes tasks correctly, but was consistently told that wasn’t enough. He was working for up to 10 hours a day, but still his effort was not counted as sufficient. His self esteem suffered, his anxiety levels rose.

Using academic achievement as the main measure of success has the potential to cause disabled students great harm. It sets them up for failure and is a measure that masks the fact that students are not being meaningfully included in educational settings.

3. Funding 

The introduction of the Every Student Every School policy was the beginning of the end for my Autistic son’s time at school. Aside from the new funding model turning my Autistic children into a financial burden on the school, it had a very real and immediate effect on my sons lived experience as a student.

It took only two weeks after the cessation of my son’s individual funding and the resulting loss of teacher’s aide support for him to comment that things were harder. That may seem insignificant, but for my son it was a big thing as he doesn’t verbalise concerns he has unless they are affecting him significantly. It took one term before he was consistently telling us he didn’t want to go to school anymore.

He started to be a victim of bullying. He had possessions stolen, his bag urinated on, he was taunted, he was grabbed by another student then dragged into the shower cubicle in the change room and had the water turned on over him. He persisted through another eighteen months of attending school with minimal support. To be honest, in retrospect I wish we had removed him sooner, but homeschooling is an option that is not widely supported and comes at an emotional, mental, physical and financial cost to families that choose it. The specific situation that prompted us to remove him involved a teacher shaming and excluding him for being “disruptive” and asking too many questions (something my son does when he is anxious and trying to clarify what is expected of him).

There were staff at the school that did try. They did their best to support my son and make things easier for him. He was offered a quiet place to retreat to. The school principal responded appropriately and professionally to the complaint I made about his situation. I am a teacher myself, so I understand how hard it is for them. I know the feeling of helplessness and inadequacy when you just cannot help a child from within the constraints the system places on you as a teacher. For the teachers who “get it” the system is endlessly frustrating.

There are also teachers who do not “get it”. Some teachers see students with atypical support needs as a problem to be overcome or a disruption to be silenced. This is a huge obstacle to real inclusion that could quite possibly be alleviated by dedicating funds and resources to providing appropriate ongoing education and training for staff.

Solving the issues I can see requires a change from the very core of the education system all the way out to the edges. It means new policies, new procedures, new minds to work on it and new funding to build it. It requires new research, new ways of thinking and new methods of training. It requires more teachers with better pay instead of funding cuts and pay deals that won’t even keep up with inflation. It requires an investment that reflects the true value of society caring well for its most vulnerable. It requires an investment that politicians seem unwilling to make.

Now, none of what I am saying is new to this discussion. Many others have said what I am saying. David Gonski and a team of people spent a number of years investigating and putting together a report of recommendations to the Federal Government. I read the report, and I hope Mr Gonski and those who worked with him will forgive my gross simplification of their work, but essentially what I understood the report to say was that there are some students who require more support than others and the schools those students attend need to be funded better if they have any hope of providing that support. My understanding is that our current government wants us to believe they agree and so have promised to fund the first few years of the roll out of the suggested strategies hoping, I think, that no one will notice that all the really essential stuff that would make the implementation of the Gonski Report recommendations worthwhile won’t happen within the timeframe they are willing to commit to.

I’d like to clearly state that I do not agree that extra funding is needed to provide segregated classes for disabled students, or intensive early intervention or behaviour modification therapies for every child identified Autistic or otherwise neurodivergent. I do think that funding should be allocated keeping in mind that there are some schools with higher than average populations of children who benefit from receiving more support than the typical student. I do think that more funding should be provided to allow teachers access to more resources, more training and more hands on help in their classrooms. I do think that if we are to have any hope of meaningfully including disabled students in our mainstream classrooms things need to be done differently than they are now and that will cost a lot of money. I think it is an investment in our country’s future that we must make.

4. Inclusion 

Inclusion is a word I see used a lot in media and in educational settings. It is thrown around to assure everyone that schools are supportive and understanding of students with extra support needs. Nevertheless, the reality of attending school as a disabled person is a bit more complicated than being told you are included.

Inclusion is not the current system we have in public schools in New South Wales. A person’s physical presence in an environment is not actually an indication that they are included in a meaningful way. It is possible for a person’s presence in an environment to be treated in such a tokenistic way that being “included” actually makes them more of a victim, and no one notices because it is called “inclusion” and words like “positive” and “support” are used.

There are many issues that contribute to the creating of victims within a system of “inclusion”. One of them being the current behaviour management strategies discussed above.

A second issue is the physical environment. If you ask for environmental accommodations, the school is limited in what they can do because of the availability or willingness of staff to supervise and the physical constraints of the existing buildings. My Autistic children find fluorescent lighting difficult to cope with as they can see the strobing of it all the time. My Bipolar daughter really struggled to manage her sensory overload in hallways and classrooms with no quiet place to retreat to but the bathrooms (when they weren’t locked) which were unclean and smelled overwhelming. She was frustrated that there were facilities at her school to support those with physical disabilities but no real support for those experiencing mental health challenges.

A third issue is the lack of adequately trained and well supported teachers. Teachers are not trained to support children with a variety of needs, learning styles, challenges, and disabilities. By this I don’t mean that all this is not mentioned at Universities or in classrooms. I mean that it is mentioned…. given lip service to… but ultimately teachers are neither properly trained nor properly supported to do these things well. This has been evident to us over the years as we have observed teachers who chose to implement the suggestions I made to support my Autistic children in the classroom commented to us at some stage in the year that the whole class was benefitting from the changes they made. Simple strategies can allow a disabled student to exist more comfortably with their peers and prevent the “need” for behaviour modification programs.

A fourth is an assessment system that still requires teachers to measure against a standard, so they teach to that standard. Teaching to that standard requires a certain amount of time and paperwork, leaving the teacher tired, stretched beyond one person’s mental, emotional and physical resources, and relying on compliance from the kids to get through it all. This brings us back to a cycle of disabled students’ efforts at self advocacy being seen as disruptive behaviour in need of managing.

For inclusion to be real, and successful, it requires measures to be put in place in the planning phase. Those things need to be physical, structural, environmental, and taken into account when drawing up plans for buildings. They need to consider the social, emotional and academic needs of students and be taught to teachers while they are training. They need to be included in policy documents and curriculum. As long as inclusion continues to be an afterthought to satisfy policy makers, the education system will remain a dangerous place for my Autistic children to be.

So, I guess I should try to talk about what does work for my children. What would real inclusion look like? What would a classroom that could successfully support my children look like?

  • It would be well lit by natural light rather than fluorescent lighting.
  • There would be numerous “chill out” zones that the students could access as they felt the need to.
  • There would be minimal large group instruction time, with enough teachers and resources to provide small group and individual assistance for all learning experiences.
  • There would be minimal bookwork expected, and an awareness of the difficulty many students have with text heavy learning leading to facilitation of hands on and interactive learning experiences provided as a supplement or alternative to text based learning as appropriate to meet individual needs.
  • It would look unorganised to an outsider, but be structured in a way that each student’s needs for routine were met and communicated in a way they understood.
  • It would involve mess and noise and play and laughter, even for older students.
  • It would involve teachers who are prepared to learn to be partners in education rather than leaders who must teach to the outcomes of standardised testing.
  • It would require out of the box thinking.
  • It would include students as planners and decision makers, with teachers as facilitators and collaborators whose goal is to assist rather than enforce compliance.
  • It would recognise that much of the value of schooling is not the actual academics, but rather the process of learning to learn and being confident to follow your instincts and advocate for yourself.
  • It would be flexible and responsive to students leadings and interests and ever changing needs.
  • It would be indoors and outdoors and real life hands-on practical learning as much as possible.
  • It would allow for screen time as a coping strategy that is not frowned upon.
  • It would allow for communication methods that do not require vocalising.
  • It would be gentle and encouraging and never coercive or manipulating.
  • It would assume children know themselves and their needs and would listen carefully.
  • It would value diversity in all its forms and would encourage children to genuinely be themselves, to confidently ask questions and explore answers, to see themselves as both learners and teachers, and it would hold sacred the right of each child to say no when they need to.

With those things in place in a classroom would begin to make public education more accessible to my kids and would be a start at making inclusive education available to all. It probably seems unrealistic compared to the system we have, but I do think that it is pretty obvious that the current system is not working for many of our kids and if we aren’t prepared to think differently about education we are only going to see things get worse. If we say we value education, and we want to serve all students well, the approach we are taking must change.

Inclusion is not something we can pull off by adding ramps and rails and lunch time library clubs and sticking kids in support units and saying we are trying our best. Real inclusion requires a complete change of approach that aims to not just add disabled people’s needs as an extra at the end of our planning, but incorporating them from the beginning by involving them in discussion from the beginning of the planning stage.

5. The experts 

An issue that I did not understand fully when I began my advocacy efforts is that the little information educators have about disability comes from professionals who have no lived experience of disability. It is one thing to have studied at University and to have sat with clients in clinics or students in classroom settings. It is another thing entirely to be a disabled person in a society that sets itself up to favour the non-disabled. One of the most important things I have done for my children is to listen to Autistic adults and learn from them. Autistic adults have an insight that non- Autistic people cannot offer in the discussion around supports and accommodations that make education accessible to Autistic students.

If there is a plan to change the education system to better support disabled students it must be done in consultation with disabled people. We must ask them what changes should be made. Not only should we ask disabled adults what would have made attending school easier for them, we must also ask disabled children what supports they need now in our current system. We must listen to their answers and take their recommendations seriously. If we fail to do this, all we will do is continue to create systems that create victims of our most vulnerable students.

Diversity is valuable and failing to truly plan to include all students is short sighted and narrow minded. Until the policymakers and funding providers realise this and are prepared to act on it, we will continue to see children like mine failed by the system that is supposed to exist to prepare them to be their best, and that is something we should all be ashamed of.

Thank you for considering my submission.

Michelle Sutton

 Here is a link to the letter I mention in my submission.

Please note: I wrote this letter three years ago. Since then I have met, become friends with and learned much from Autistic adults as I have sought to find the best way to support my children. Because I have learned from my Autistic friends, if I were to write this letter today I would speak differently about Autism and my Autistic children. I would speak with positivity and I would not use pathologising language like “disorder”. I would likely reference an Autistic led organisation rather than Aspect. I would not however speak any differently about the education system.

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