Every morning before school, Emerson Cook would ask his mum to check the weather. If it was raining she knew her then five-year-old would be anxious.
“He was always worried about rain,” Alicia Cook says. “And if the weather forecast was rain, I would be anxious too …
“Every day in the pit of my stomach was the worry about going to school.”
At the time, Emerson’s anxiety was put down to a flood evacuation that had taken place at his small private school in Launceston, Tasmania. But what Alicia didn’t know was that Emerson’s worry was an early sign of what would later be diagnosed as having anxiety, attention-deficit hyperactivity disorder and autism.
Alicia would try to coax Emerson into class but more often than not he would refuse.
In an attempt to get her son the support he needed, Alicia moved to an inner-city public school in Melbourne.
Here, the problem worsened. At times Emerson tried to escape to come home, climbing the school fence, and Alicia would regularly receive phone calls asking her to collect him.
“You just live in a constant state of anxiety,” she says.
Despite his diagnosis, Emerson was ineligible for individualised support funding in school because he had advanced language skills and, after “trying everything” – including a third school – Alicia made the difficult decision to pull her son out.
“It was just causing everyone so much distress that we had no choice,” she says. “It was devastating.”
Almost a million students like Emerson
There are now almost a million school students in Australia needing extra support because of a disability, equivalent to one in four enrolments.
And while some families have given up on the system, most are attempting to make it work, with almost 90% of students with a disability still enrolled in mainstream schools.
The number of students reported to have a disability is growing at lightning speed, jumping almost 40% since 2017. Social or emotional disabilities have grown at almost 10% a year. This compares with enrolment growth of 1% a year over the same period.
In classrooms today, an estimated 4% of seven- to 14-year-olds now have a primary diagnosis of autism, while between 6% and 10% of children have ADHD.
Experts point to the national disability insurance scheme as a key driver of the growth – because formal autism diagnosis allows families to access support under the scheme – along with changes to how schools assess disability for reporting purposes.
Research from Children and Young People with Disability Australia shows that less than a third of students with a disability feel supported to learn at school. About half report feeling welcome and included, while 70% say they have been excluded from events or activities at school.
At the same time, teachers report being overwhelmed. Resources are stretched to their limits.
Many families are in upheaval, quitting jobs to home-school, or shifting schools to try to find somewhere that works.
“Inclusive education” – the idea that students with a disability should be involved and supported in a mainstream school environment – is considered the gold standard. It is supported in principle by all state and territory governments.
But is it working? Are schools and teachers coping? Are children with disabilities learning?
The teacher’s dilemma
For Amy Harland, a teacher and assistant principal in Port Macquarie on the mid-north coast of New South Wales, the statistics present themselves daily in the classroom.
Some of the classes in her low socioeconomic school now have more than two-thirds of students registered as having a disability that requires the school to make an “adjustment”.
“If you’ve got a class of 30 students and two-thirds of those students have got a disability, teachers are having to adapt and change their routines for every lesson,” says Harland, who is speaking in her role as an executive member of the NSW Teachers Federation because teachers are not allowed to speak freely to the media.
“That could be a visual timetable, a choice board, a feeding plan. It could be extra support in the classroom. It could be a myriad of things …
“You are going to have to manage a range of different abilities and disabilities within the one classroom. In a year 6 classroom, you could have to differentiate activities from a kindergarten level to potentially a year 7 level.
“You might have a student who might be on the autism spectrum and they find the classroom noisy and they might have headphones, or they might have a specific card that they flash to the teacher that says ‘I want out’ and need a sensory break.”
In the same classroom you could have children with attendance issues or other challenging behaviours, she says. “You have got mental health issues … kids who have friendship issues – because that is the nature of being a child. You could have kids who are [in] out-of-home care.
“You will have a whole range of disabilities, formally diagnosed and imputed, and you could have some of those kids that come with IFS [integration funding support] or partial attendance programs.
“It can be confronting. The classroom and the behaviours are becoming more and more challenging and the time that teachers are being given hasn’t changed.”
Harland says teachers are expected to develop behaviour support plans and personalised learning and support plans, as well as document the adjustments they make over the course of at least 10 weeks to register students for the Nationally Consistent Collection of Data on School Students, which is linked to federal funding.
“[Non-teaching hours] for primary school teachers hasn’t changed since 1989, but the amount of paperwork we have to do, especially around students with disabilities, has increased,” she says. “The support and resources just aren’t what they need to be.”
In online forums, teachers speak anonymously about the significant pressure they face managing children with disabilities. Some claim they have been asked to do tasks that should be done by support workers, such as toilet training.
One says: “It is hard work and I never feel like I am giving any of the kids what they need.
“Inclusion, while a nice sentiment, simply isn’t practical. Everybody in this picture gets a raw deal.”
Another says: “The biggest challenge is that the government is putting kids who need support in mainstream schools without actually funding those supports.
“It’s becoming very obvious that ‘inclusion’ is less about the kids as it is saving the government money.”
Staff exposed to ‘real violence’
Troy Wright, who advocates for student support officers in his role as assistant general secretary of the Public Service Association in NSW, says these workers are also feeling overwhelmed by the frenetic pace of change over the past five years.
He points to the 34% increase in workers’ compensation claims in the NSW Department of Education in the last financial year as a clear sign that something is wrong.
Many of these claims relate to workload and stress but others relate to a growing number of physical injuries, he says: one claim related to a student learning officer having their finger bitten off by a student.
“Our members are being exposed to real violence,” he says.
Administrative staff, too, are grappling with extra workloads as schools move from being places of just education to “an all-purpose therapy centre”, Wright says, requiring them to coordinate NDIS-funded allied health workers who visit the school.
A school in Taree reported needing to coordinate 80 allied health workers requiring access to the school for appointments with students.
A review of the NDIS last year recommended that more disability supports be provided outside the scheme, including in schools. There is widespread concern among the states and disability advocates about how this will work in practice given the strain the education system is under.
‘Are you giving up on our child?’
Sophia* was just six when she received her first suspension. The lanky seven-year-old who loves jazz ballet and gymnastics attends a public primary school in Adelaide’s eastern suburbs. But over a six-month period Sophia missed 44 days of year 1 because of multiple suspensions and, finally, an exclusion.
The suspensions followed incidents where she would become dysregulated and disturb the class, or hurt other students. Sophia has level 2 autism.
As Sophia’s behaviour escalated over the first semester of year one, the school encouraged the family to see a different specialist to have her medicated – which was against their paediatrician’s advice.
After Sophia lashed out at other students and was suspended, the school told her parents to take her to the emergency department. Unsurprisingly, after a six-hour wait, they were sent home.
Sophia’s mother, Doreen Salon, recalls on one occasion she was unable to leave work immediately and “begged” the school to look after Sophia until early in the afternoon.
“They said to me, ‘Your child is beyond the school now. I need you to pick up your child now.’”
At one point the school suggested that it could involve the police if Sophia wasn’t collected, because it had no capacity to look after her.
“I said, ‘Why would you say that? … Are you giving up on our child? Are you wanting to kick us out? What does that mean?’”
Salon says it felt as though the school “just wanted the problem to go away”.
“They said they didn’t put in an application [for funding for an ongoing support worker for Sophia] because they knew they would not be funded.
“I said to the school, ‘How can we advocate for my child? She needs help.’ And they said to me, ‘Why don’t you write to your local MP?’”
Julie Phillips, who advocates for families pursuing disability discrimination cases against the Victorian education department, says in the absence of adequate funding schools are resorting to crude measures to manage the pressure with suspensions and exclusions used repeatedly against children with a disability.
While most states refuse to release suspension data publicly, an analysis of the available statistics by Guardian Australia shows disabled children are receiving about half of the more than 200,000 suspensions handed out by government schools each year. This includes those given to thousands of primary school children.
Many students with a disability are also being put on part-time hours, and there are widespread complaints about informal suspensions – when a child is sent home from school on an ad-hoc basis.
Then there is the use of seclusion and restraints, which occur largely without departmental oversight. This could involve isolating a deregulated child in a room by themselves or the physical restraint of a child.
“Suspension is always going to be the easiest option because it is less time and less money,” Phillips says.
“But the problem is that the research says that suspensions worsen behaviours of concern and increase disengagement, so we are getting this cycle where it is just getting worse.”
After Sophia’s exclusion, the school secured a 10-week placement for her at a special school for children with behavioural difficulties. It proved to be a circuit breaker. She has now settled back into the mainstream school and is assisted by a support worker 12 hours a week.
Looking back, Salon says she doesn’t want to demonise the school and thinks the advice at the time was perhaps the “best they could do”.
“Perhaps they just wanted to avoid another difficult situation on top of the many other things they had to juggle,” she says.
“But we did really suffer as a family because we didn’t know where to go to help Sophia. And the school, to us, seemingly didn’t know how to help.”
‘Where are these kids meant to go?’
Marita Nicholas is on the frontline for families trying to make mainstream schools work for children with a disability. Based in Mansfield in regional Victoria, Nicholas is an autism practitioner and advocate for families, and much of her time is spent trying to navigate the education system for children with high needs.
Her clients, all school-age children ranging in age from eight to 18, are categorised with level 2 autism – those needing “substantial support”.
“There is not a single person on my list who hasn’t had to change schools because it is not working out,” Nicholas says.
“The thing about kids on the spectrum is they need consistency and certainty, and their school lives are completely inconsistent and uncertain.”
Nicholas, a former teacher who has been working as a conduit between families and schools for four years, says the eligibility criteria for disability funding are “onerous” for schools in Victoria, with a two-term wait for a child who needs support.
The process involves 10 weeks of observations and record-keeping before requisite meetings with the education department to determine whether or not funding will be made available.
Nicholas also points to the lack of appropriate physical infrastructure in schools, with not enough space for children with disabilities to take breaks.
She says most of her clients have experienced suspensions and expulsions and that informal part-time schooling arrangements are commonplace. She has observed that under-resourced teachers and principals often feel they have no choice but to expel or suspend a child, often under pressure from other parents.
“The principal to make that decision to expel will make a lot of people very happy and leave one family devastated,” she says.
“So it is about the competing interests, but that brings you to the next point – if you are going to make those decisions, where are those children who are not fitting in? Where are they meant to go?”
Louise Rogers is one of the founders of the organisation School Can’t, a parent-led group supporting families with children who have struggled with school and end up not wanting to go at all.
The group avoids using the term “school refusal” as it carries the suggestion of a behavioural problem rather than it being a symptom of stress.
A survey it conducted in the lead-up to a 2022 Senate inquiry into school refusal found a significant link between disability and school avoidance.
For children struggling with “school can’t”, 73% had a neurodevelopmental disability diagnosis, and a further 10% suspected or were seeking a disability diagnosis. Autism and ADHD were the most significant.
School refusal problems can lead to significant upheaval for a child and their family, with many resorting to home schooling or distance education, which are becoming increasingly popular in Australia.
A report from Autism Awareness Australia found that 35% of families were refused or discouraged against enrolment for their autistic child, while 16% of autistic children reported being “very unhappy” at school.
A record 40,000 children are now being home schooled in Australia – double the rate before the pandemic in 2019.
School attendance and retention rates remain on a trajectory of long-term decline. The year 12 retention rate for full-time students is now just 79% – the lowest in the past 10 years.
“There is an increasing number of people who are saying school is too stressful and this is too hard,” Rogers says.
She believes schools have struggled to differentiate between stress behaviour and misbehaviour in how they respond to children with disabilities.
“It is an inclusion issue for a lot of kids … but it is also about a cultural element. It is ableism in our society as a whole and the way we treat people who are different.”
‘No place for Alfie’
Nathan Bell, a Toowoomba father, was faced with this reality when, two weeks before the school holidays, he and his wife, Molly, were called into a meeting with the principal at their local Catholic school to discuss their five-year-old son, Alfie.
Alfie, who suffers from a neurodevelopmental disorder, had been attending the school three days a week.
“We were completely ambushed,” Bell says. “They said there was no place for Alfie next term, because they did not have the capability to supply the ongoing support.
“The principal said they thought he was better suited to the special school in Toowoomba and offered to advocate for him to attend that school.”
Bell knew that Alfie didn’t meet the criteria for the special school – his disabilities weren’t severe enough.
“It was a pretty solid meeting. My wife was in tears. We just felt we were in the too-hard basket. It was disappointing and heartbreaking.”
Bell later discovered that a teacher had often used what was called “Alfie’s cave” by his classmates – a room where he was separated from the rest of the class.
“If they got overwhelmed he would go in there,” he says, adding: “The teacher was put in a situation where she couldn’t offer the support for Alfie in a classroom where there were 28 other kids.
“Kids with disabilities … need to be included in the classroom.
“It is not just one school’s problem. It is the education system that needs to change.”
Bell had begun exploring home schooling when he received a call from the principal of their local public primary school, offering Alfie a place in a supported class.
“They are great,” he says. “They have welcomed him with open arms and he is excelling.”
Alfie now spends the morning in a special support unit and joins the mainstream class in the afternoon, attending school full-time.
Parents have ‘unrealistic demands’
Craig Petersen says he believes most schools are getting it right and the vast majority of students who need adjustments for a disability are well managed. But the president of the NSW Secondary Principals’ Council says resources are always stretched and that there is a shortage of school counsellors, student support officers (SSOs) and psychologists.
While he stresses that schools are inclusive as they can be, Petersen points to the unmet demand for specialised support places for students with more complex needs as evidence that many parents are looking for more specialised settings. He says this will often occur when schools have done “everything they possibly can for that child”.
“In many cases we have got parents who are very distraught because they are struggling themselves,” he says. “When we have done the best we can in a mainstream class or a mainstream school, the parents are desperate for us to access a specialist system for them.” But there are “just not enough places”.
Petersen also believes parents sometimes have unrealistic demands about what funding they can access to support their child in school.
“A parent might say, ‘We want an SSO full-time,’ but we just can’t. We don’t have the funding for it and there is sometimes a disconnect between expectations.
“Advocacy groups may give well-intended advice but it is not necessarily accurate advice about what can be reasonably done for their child.”
Advocate Julie Phillips agrees the sector is underfunded – but believes inclusive education in Australia has been “set up to fail” by education departments.
“There is a view, that is shared by me, that the underfunding is deliberate to funnel kids out of mainstream schools into special education settings because these settings are cheaper for government,” she says.
“But the research is overwhelmingly in favour of inclusive education.
“When it is done properly it creates better outcomes for kids with disabilities and kids without disabilities – that is the first and most important reason, the second reason is that with the high levels of general discrimination against people with disabilities in the country, there are clear benefits to having children with disabilities and children without disabilities growing up side by side.”
The final report of the disability royal commission was split on the issue of special schools.
Three commissioners recommended phasing out segregated education by 2052, while three others disagreed. All agreed that there needed to be “a transformation” in culture, policy and practice in education to achieve an equal and inclusive education for people with disabilities.
Cherry Baylosis from Disability Advocacy NSW believes it is premature to discuss phasing out special schools given what she sees as “a broken [education] system that is buckling under pressure”.
“In an ideal world, all schools would have the resources that they need to provide inclusive education,” Baylosis says.
“Realistically the idea of phasing out segregated schools, and … placing [students with disabilities] into mainstream education without the adequate resources will be potentially quite dangerous if the issues that we’re talking about are not addressed.”
What would a truly inclusive classroom look like?
It’s important to differentiate between children with profound disabilities and those with developmental diagnoses who have high functional abilities but are struggling in the classroom, according to Andrew Whitehouse, head of the Autism Research Team at the Telethon Kids Institute in Perth and a member of the federal government’s national school resourcing board.
“It is the second category that has exploded in numbers and has created significant challenges within the school system,” Whitehouse says.
“There are a growing number of children who are struggling within the school system due to developmental disabilities. This is not a marginal issue … this is now education, and it is difficult to think of an issue that affects people more on a day to day basis in the education setting than disability.”
“If we are to truly create inclusive classrooms, we have to have everything on the table, from teacher training all the way through to the basic architecture of buildings.
“There are many children with disabilities who are educated in the same classrooms as their peers that are not receiving an inclusive education because the classrooms, the teachers, the level of support is not set up for that.
“That is not a fault of any single part of the system. That’s an issue with funding at the top, all the way down to simple architecture at the bottom.”
He is hopeful that upcoming negotiations on the new national schools reform agreement will prioritise the issue, saying there was a need for a “coherent vision” for how we educate children with disabilities in Australia.
“Kids are struggling with this, parents are struggling with this, teachers are struggling with this, and education systems are struggling with this. The incentives to change have never been stronger.
“We have forums to make this happen, we have the education ministers’ meetings, which are designed explicitly to address truly thorny and wicked problems such as this. So we have the forum to do it, we have the collective will to do it, we just have to do it.”
“It’s heartbreaking to see children who, with some additional support, some changes to how we provide either teaching or how they are managed outside the classroom, could be included, but are excluded from classrooms because all stakeholders feel that’s the best option.
“It is very, very rarely the best option.”
Linda Graham, director of the Centre for Inclusive Education at Queensland University of Technology, believes there needs to be “a systematic, seismic shift” in the way Australian schools approach inclusive education.
“[Children with disabilities’] are not getting reasonable adjustments and the support that they need,” she says. “Rather than [expelling] the kid, we need to do so much better proactively implementing inclusive practices so that kid is supported.”
‘I’m so proud of him’
Back at home in Launceston, Alicia Cook wonders if Emerson will ever return to mainstream schooling. Having been forced to restructure her small business to home school him, Alicia is still trying to make peace with her son’s school experience and the sacrifices that have come with it.
“I’m filled with grief,” she says. “Because I had imagined our lives would be different. And I have to accept that Emerson is unlikely to have some of the childhood experiences that I had hoped for him, like going to school camps and doing sleepovers, and all of those things, and I just have to accept that there’s going to be a different path for him.
“It is really hard. But from my perspective, kids like Emerson that are doing this, they are actually saying that the system is not working, and they have the courage to actually stand up and say it’s not right.
“And I’m so proud of him for doing that.”
*Name has been changed
Do you know more? Contact sarah.martin@theguardian.com
