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Special needs kids: The great education system let-down

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The Australian Education Union (AEU) asserts that projected funding for public education is down overall in the 2015 Federal Budget. And after ignoring disability education for more than a year, a small amount of the specific funding recommended by businessman David Gonski for students with learning disadvantages is also down. This is despite Gonski’s December 2011 review which recommended that schools be funded according to the needs of their students and what is required to educate each one of them to a high standard. Parents and teachers don’t know whether to laugh or cry. Disability education funding is still going backwards.

Yet asset-rich selective private schools continue to be funded by taxpayers and to attract more funding per student than public schools. Let me tell you why I mind, writes North Shore mum Jane Salmon, who has two children with autism and opens up about her challenging experience with our education system.

Picture the major private school with its progressive child-centric programs, extensive ovals, white picket fences around manicured cricket pitches, remedial classes, the halls, flash acoustic theatre fully of whizzy sound and lighting gear, boardrooms, science ‘centres’, lockers, landscaping, gates, security guards, hospitality kitchens, computers, ironically named ethics centres and pools. I’m sure you can see one of these on your bus or train journey.

Now add a diagnosis of high-functioning autism and picture a headmaster offering to refund your $3000 deposit if you hurry up and surrender your sweet blond, blue-eyed son’s place to a more ordinary three year old. You have just a fortnight to adjust your expectations and make up your mind.

Yep. That was us. Heaven forfend that our child’s needs consume excess teacher time or the oxygen owed to a child commuting to school in the latest Lexus. (We were no longer early enough nor suitable for other private religious schools.)

That’s right. The so-called comprehensive private system is not ‘carrying’ or unburdening the public education system. It is cherrypicking it for easy-to-teach students. This is legal. This, according to libertarians and Liberals is democratic freedom.

Next, picture a wood and fibro hut (with no air-conditioning) barely a 100 metres down the highway. For several years this is the classroom for a composite bunch of infants that still can’t grasp that A is for Apple, let alone Autism Spectrum Disorder (ASD).

The support class: just one funding black spot in a complex public education system that still doesn’t begin to address disability consistently across the state. This funding gap ends up influencing where parents live, work and what they do. Despite successive NSW Education Ministers’ best efforts, any child with additional needs living to the west of the Blue Mountains is simply stuffed. It is a system wherein low-IQ kids do a lot more colouring-in and video watching than seems strictly ideal.

Fortunately, most public school teachers are amazing. They are committed to diversity and inclusion. They dig deep to remove distractions, help in the playground, ensure lunch is eaten, supervise timed toilet breaks and make certain that jumper labels don’t scratch. They also deal with parents in denial, protective obsessing parents with their special diets, as well as kids’ nappies, tantrums under tables, noise sensitivity, dyspraxia and more. One public school teacher even dropped a set of second-hand uniforms on our porch (take a bow Kathleen Ash).  

Culture and language issues are additional variables. Dedication and passion are teaching essentials in the public system.

Where’s the help?

Pretty much nothing relevant is covered by Medicare. In 2004, our local MP, a Howard Cabinet Minister, just shrugged and gazed past my shoulder. Apparently, he knew someone who had a cousin with autism. Well, that hardly helped.

Imagine how fast progress could be made if, instead of after-school appointments and expensive therapies afforded once or twice a week, these fantastic teachers could have herded their charges to region-based learning and specialist clinics where the specific needs of students were dealt with one-on-one. That’s the standard in Scandinavia, the UK, Canada and some parts of the US. Why not here?

At our northern Sydney support unit, earnest parents pooled funds for music therapists and Special Olympics to come to the support class to give teachers a break. We threw ourselves at Occupational Therapy at every opportunity. We found a portable air cooler. The epileptic children in the next room sorely needed one, too. How many waves dare parents make?

Private specialist or special schools were considered. Yet places there are rare and some new autism schools offered very inexperienced young staff hastily trained over summer and very little financial stability or experienced governance.

Many parents of children with severe disabilities find the staffing and standards of public special schools higher, but greater nursing and OH&S standards come at a price and so there is a shortage of places.  

Double the concern

My second son was diagnosed. On top of ASD, he’d been blessed with Attention Deficit Hyperactivity Disorder (ADHD) and dyslexia, like my brother. So much for organic pregnancies, obstetricians and perfect newborn Apgar scores! I basically lived at therapists, learning all I could.

D, it seems, is for Dual Diagnosis and, boy, doesn’t that keep everyone busy?! Prioritising needs becomes confusing.  

Along came Rudd and Gillard, bless them. The separate fenced playground got munched up by demountables right next to a busy highway. Teachers aides became even faster runners.

Teacher aide time was next cut by the state government. A new system hasn’t quite picked up the slack despite spot grants from Peter Garrett as Federal Education Minister. Video sessions in behaviour management spread across several schools is barely a substitute for TAFE-trained, permanent full-time, experienced and expert teacher aides.  

Medication debates went on and on. Therapies have been in the afternoons and on weekends (despite paternal denial). I passed the stress onto my relatives and shopped exclusively at Vinnies.

A close friend died suddenly. And then my brother (the one with dyslexia) hit the skids. He had kids. I was hardly there for him in the midst of our own autism crisis. He suicided. Mum developed a motor neurone disease and eventually succumbed to the gloom that followed. These stressors further undermined my marriage which was always challenged by inherited ASD (his) and depression (mine).

Somehow, those homilies about carers having to be ‘kind to themselves’ didn’t fit with paying for dentistry or another specialist’s fees when already living to avoid acrimony: let alone indulging in haircuts, high tea or a massage. How about a $500 breast scan? Not on my radar. Who’d even mind the kids?

Rudd’s stimulus $1000 came through. Instead of buying a barbecue, I took the kids to a cabin in Bundanoon for a week’s break. After their father collected them, I had a few hours to myself. I did some sit-ups, had a long shower and realised that that old bruise in my chest felt more like a lump. Clunk. A State 3B cancer. Over 5cm. Metastasised.

My oldest child was barely nine. A week later, our private hospital cover finally came into its own. Surgery after surgery, then chemo and radio. I farewelled any remnant of physical strength, but saved a fortune in bras. And I learned that eyelashes are to stop your eyelids gumming together. Hurrah.

It was twelve months after chemo before I could scan a line of text, which yielded far greater empathy for children who find reading physically difficult, despite all the behavioural optometry and special Irlen lens glasses money can buy.

From June 2008 to June 2012, the government committed funding (FAHCSIA )to help provide services to children with ASD, but kids with dyslexia and cerebral palsy still go without the treatments they most need and deserve. The infuriating thing is that the therapies for both are progressing in leaps and bounds overseas while access here remains all but impossible.

My interpretation of integration…

Integration into the mainstream is the public education trend for lucky high-functioning kids.

Integration into the mainstream meant leaving a cohort of parents facing similar burdens and scattering into busy primary campuses with few aide hours available. Organising my child to sit in a chair and not disrupt the learners was about as much as anyone could ask. Playdates were few and far between. Almost the entire class had fancy birthday parties each year, yet it was rare to receive an invitation.

Public school integration means running the P&C raffle to compensate for having the most behaviourally challenging child of 800 students from 51 language groups. There really should be a certificate for that. He isn’t going to get one for anything else, unless it is creative work evasion.

Integration means sending a $150-per-hour therapist at least once a week to the school to give the wonderful teacher a break.

Integration means having the school counsellor on speed dial.

Integration means a broad and exciting bunch of mainstream role models.

Integration means have a huge pool of kids to pick a friend from.

Integration means elation whenever one encounters a teacher with actual training in learning difficulties or special ed.

Integration means begging the school to explain Autism 101 to a new set of 200 hundred teachers every year or so.

Per capita funding is higher for private schools that deny places. For me, this is the final nail in elitism’s coffin. I was a fourth-generation WASP private school snob, but am now a fully paid-up subscriber to the class war.

Meanwhile, my lovely firstborn son is scraping through in the mainstream high school. Last year he completed a university administered state-based science exam and landed in the top six per cent. (His dedicated teacher, Mrs Seto, is my hero. She even taught him at lunchtime.)

Unfortunately, at his school the waiting line for working bunsen burners, the crackling PA, the missing mechanics teacher, the non-existent break-out area, the sluggish computers, cramped library, a lack of lockers and the broken photocopier or printer, all make for a somewhat stressed child – and a pretty strong case for maths, occupational therapy and English tutoring some 12 years after I first afforded ASD therapies.

Integration means nowhere to run at lunchtime on a crowded concrete campus and copping mild teasing as stoically as you can. It means falling apart in front of your mum every afternoon once safely back home.

Gonski, such as it was, is not yet here. Disability funding was the first thing Abbott cut. The Minister for Education and Training, Christopher Pyne, opines that full Gonski was never guaranteed.  

The National Disability Insurance Scheme (NDIS) is not yet here. Nor will it cover half the kids I know. I pay $2000 a month on therapies for two children and walk everywhere because I cannot afford a car. Most parents of students with additional needs live with an eye to the future accommodation and care of their beloved offspring. Tough choices are made daily.

I am still extraordinarily tired and a couple of years away from knowing whether I am completely free of cancer. Above all, I am bloody angry about those hardworking parents who cannot afford or access therapies. A whole generation of children bristling with potential has been utterly shafted by mindless austerity in the 14 years I have been a parent.

We’d love to hear your opinion on the education facilities available for special needs children in the comments section below.

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  1. Beccy Summers
    Beccy Summers

    Very well written. I felt every word. I am sad for your struggle. In some ways it echoes ours. i am the grandmother. The Mother, my daughter, is now post chemo and still unable to think straight; her 7 year old child has either ASD or complex trauma or both (formal diagnosis has been prevented by complex family court issues over the last 6 1/2 years). She’s in a special ed class at one school (3 days / week) plus receiving lots of assistance / interventions at a really good local public school (2 days / week). Yes those teachers are amazing, aren’t they? – but the child is still barely coping. Does anyone know of any special schools that are good / understand children with high anxiety? We will move (being effectively homeless anyway! – living with friend and already outstayed our welcome). Grateful for any advice or pointers!!

    23 February 2017 at 7:47 pm Reply
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