The curious incident of the boy in the headlines

by Jai Breitnauer / 20 March, 2018
RelatedArticlesModule - Autism related

As yet another autistic child features in the news, Jai Breitnauer asks why children with disabilities are still being excluded from New Zealand’s schools.

Flicking through the news late last year, I was struck by a story about a nine-year-old autistic boy who’d been expelled from school.

Christian Cosgrove has ASD (an autism spectrum disorder) and also ADHD (Attention Deficit Hyperactivity Disorder), a condition which commonly co-exists with autism. However, his mum Christine says he’s a highly intelligent boy.

The school, Woodend Primary in North Canterbury, said Christian’s behaviour was unmanageable; he had been stood down several times before. The family said the school hadn’t put the right structures in place to support him. “Like many children with ASD, if he’s in a loud and chaotic environment it could be hard for him,” Christine Cosgrove told me. “He could get upset and heightened, or he could run.”

Christian was seated away from his classmates in a 90-child “modern learning environment” and given worksheets to complete, in line with his academic abilities. Cosgrove says Christian was agitated by the noise, but also felt isolated and lonely sitting apart, and it affected his relationship with his peers; the final straw came when the school removed Christian’s “safe space”, a quiet area commonly used with ASD children, who are easily over-stimulated. “He felt like everyone hated him, and that he had nowhere to go when things got difficult.” The day Christian was expelled, she says, he was distressed and crouched under a desk. He “lashed out” at a teacher trying to coax him out.

Woodend Primary declined to comment when approached by North & South. However, Cosgrove has heard of schools using tactics such as suspension and expulsions to bolster their case for intervention from the Ministry of Education (MoE). “More funding and better support for the school would have made a huge difference to Christian.”

This story resonated with me because I also have a highly intelligent nine-year-old boy on the autism spectrum who has ADHD and is struggling in mainstream schooling. My experience of parenting both him and his neurotypical brother in the same school system has led me to believe that there is a crisis in education, and children with additional needs are on the sharp end of it.

Isaac had been at school in Auckland for a year when he was diagnosed. It was hard to swallow, looking at our bright, inquisitive and articulate boy, so happy the vast majority of the time. But it wasn’t long before the challenges arose. Although he was achieving academically and was a gifted artist and musician, he found social situations difficult to navigate and struggled to maintain friendships.

Read more: Talk With Me: The app getting young people with autism talking

Writer Jai Breitnauer’s son, Isaac, is a highly intelligent nine-year-old boy on the autism spectrum. Photo/Ken Downie.

By the time he turned eight, school was a confusing and often scary place, and the loneliness he felt as a result affected him deeply, causing him to act up or retreat into himself and refuse to join in. Increasingly, he began to ask to stay at home, suffering panic attacks when we dropped him at school. His academic progress stalled.

At this point, I expected some intervention – a teacher aide, additional resources, training for staff who may not be familiar with ASD. Naively, I assumed we could just request this extra support, as we already had a diagnosis. But it was far more complicated than that.

Isaac’s school, Newton Central in Grey Lynn, desperately wanted to help. This lovely little bicultural primary school has a mantra around inclusivity and belonging, placing great importance on Te Tiriti o Waitangi and offering both bilingual and full-immersion te reo pathways. They are committed to the principle that every child deserves a good education. Yet Isaac, and other children like him, hit a roadblock – and government policy is largely to blame.

It’s not just woeful underfunding preventing children like Isaac from getting the support they need, but the system is so complicated that funds are almost impossible to access.

The Hunger Games

Isaac’s school principal, Riki Teteina, has spent 18 years outside New Zealand, teaching in the international private sector. He returned in late 2016 because he wanted to give something back, but after just a year in the public system, he is perhaps the most frustrated of all of us. “Really, we should be targeting children who are struggling immediately, making sure their needs are met, otherwise a mild learning disability in primary school could become a big anti-social behaviour issue in a teenager,” he says.

Teteina says when faced with a child like Isaac, the first port of call would be the RTLB (Resource Teacher Learning and Behaviour) service. They come into a school and monitor the child in a classroom, then work with teachers and whānau to develop an Individual Education Plan (IEP) to help them.

“It can take two terms for a referral to be resourced,” says Teteina. “The RTLB will work with the child for a maximum of 20 weeks, then you have to wait a term before you can start the process again. There’s no funding available to help put the IEP in place.”

To get additional funding for behavioural issues, schools have to record a series of dangerous incidents before the MoE will take action, even if they’ve identified a child who would benefit from assistance before such an incident has taken place, he says.

“I had one child with two violent incidents on their file. When I discussed this with an MoE representative, they told me to come back when I had 25,” says Teteina. “What’s that doing to the child? To their peers and the school community? I had another child with a number of serious incidents against their name and it took nine months to see the educational psychologist – the gateway to funding – because, I was informed, there is only one working in the Auckland region.”

Riki Teteina, principal of Newton Central School. “We should be targeting children who are struggling immediately... otherwise a mild learning disability in primary school could become a big anti-social behaviour issue in a teenager.” Photo/Ken Downie.

The key issue, he says, is that children aren’t resourced according to their specific need. “The child not only has to fit the criteria, they also have to be more severe than another child applying for the same funding. One will lose out.”

I’ve heard another parent refer to this as being like The Hunger Games for disability. You put all the funding on a podium in the middle and only the children with the most severe needs get resourced while everyone else is left to flounder.

The top level of funding, available to only around 1% of students with the most serious need, comes via the Ongoing Resourcing Scheme (ORS) and is attached to a student for their entire school career, rather than on a term-by-term basis. However, Teitana says the majority of his applications for ORS funding have been refused. And even if an ORS child qualifies for the full contribution, it still doesn’t meet the full cost of managing their additional needs within the school environment. “I’d say it covers about 75%,” he says.

Teteina may be being generous. Other sources, including teachers and special education needs co-ordinators, put the true figure as low as 60%. “The school, and sometimes even the parents, might have to find the other 25%,” he says. “If they can’t, then that child may not be able to attend school at certain times or take part in certain activities.”

Quality teaching assistants (TAs) are also in short supply. ORS funding allocates a pay rate that’s much lower than their market value. Many schools give out term-to-term contracts and the role is funded only for the 39 weeks a child is at school, so TAs are not entitled to the same benefits as teachers, who are paid for the full 52 weeks. “Because the pay is so low and the job is so insecure, the pool of people to draw from is perhaps not up to the standard a parent might expect,” says one mother. “My daughter’s TA was the cleaner. She had no teaching experience, no training and no specialist knowledge. She was just a woman who was available and didn’t mind being paid badly to help a couple of kids a few hours a week.” 

Children with autism and sensory issues find blocking out “white noise” difficult, so noise-reduction earmuffs can help them manage stress and anxiety in loud environments at school. Students can also wear them to muffle sound when it’s time to concentrate. Photo/Getty.

The Lost Generation

It’s hard to imagine a country like New Zealand could be guilty of systemic human rights abuses, but each and every day, children are unable to attend school or join in with certain activities because they have an additional need.

From where I’m sitting, stopping a child from participating because of their disability contravenes not just New Zealand’s own laws, but the United Nations Declaration of the Rights of the Child. Trish Grant, director of advocacy for the IHC, agrees.

IHC is an organisation that advocates for people with intellectual disabilities – and the right to education was one of its early rallying cries, says Grant, who was a teacher, social worker and worked in the office of the Children’s Commissioner before taking on her role at the IHC in 2006.

“For 20 years, funding for children with disabilities has been in the too-hard basket,” she says. “International figures put the number of children with an additional need in any given school population at 14-20%, and yet in New Zealand only 3.1% of the school population is directly funded [for special needs].”

Grant says this is made up of funding for an estimated 1.1% ORS students, 1% students requiring speech and language therapy, and 1% of the school population with behavioural needs. Schools are expected to resource any deficit from other budgets. “In reality, the figures [of children with an additional need] are much higher.

It’s obvious to Grant this is a human rights issue. “If you start from the idea that a child with a disability has a right not to be discriminated against, you can see the failures clearly,” she says. “More important, you can see the failures exist because of the systems and structures set down by government.”

Ten years ago, Grant led a charge to bring a legal action against the New Zealand government, which the IHC believes is breaking both our own and international human rights laws by not offering a truly free and inclusive education for everyone. The case is still dragging on in the European Court of Human Rights, which Grant says is itself hampered by a lack of funding.

“A whole generation of children has been lost in the current system while we’ve been waiting for this case to be heard. And that’s not considering the generations before them. The resourcing framework needs to respond to actual needs and real numbers. The criteria urgently needs to be revised and that is what we are recommending the new government do.”

Grant is hopeful the Labour-led coalition will herald tangible change in the education sector, as Labour was so strong on these issues in opposition and during their election campaign.

Education Under Review

“One of the big challenges ahead is to make sure it doesn’t matter what school a child is attending; they’re going to get a consistent quality of education regardless of what their learning needs are,” says Education Minister Chris Hipkins, who notes there are “pockets of excellence” within the current system, but admits that not all schools do inclusivity well.

“We’ve got a range of central government supports [for schools and children]. Feedback we’ve had consistently is this can be a difficult system to navigate, particularly for kids with certain groups of needs – sometimes the criteria just don’t work for them. We want to look really closely at this. It’s not just about the quantity of support but the criteria to access it.”

Hipkins says Labour had serious concerns about the quality of inclusive education while in opposition, but a lack of transparency meant the issue was hard to address. “One of our concerns was that accessing data, good reliable data on the scale of need, was difficult,” says Hipkins, who confirms the government has no clear idea how many children with additional needs are actually in our school system. “That’s one area we will address in the coming months [spearheaded by Minister for Children Tracey Martin].”

Minister of Education Chris Hipkins: “One of the big challenges ahead is to make sure it doesn’t matter what school a child is attending; they’re going to get a consistent quality of education, regardless of what their learning needs are.” Photo/Getty.

Hipkins also accepts the structures in place for allocating funding are flawed, and suggests that in line with the move to scrap National Standards, the government will focus on designing a more child-centric education system. “I’m not in a position [yet] to give a firm answer on whether we need to completely change the funding system, but we will be asking, how do we make the system more responsive to the needs of the individual child?”

Speaking directly to anyone at the Ministry of Education proved more difficult. Katrina Casey, deputy secretary sector engagement and support, did answer questions via email through the MoE press office, and she has quite a different take on the funding and support issue. “It is not correct to say ORS funding only covers 60% of the costs involved,” she responded, when asked why the system is so underfunded.

“In addition to the Special Education Grant [SEG] that all schools receive to support students with additional learning needs, every ORS-verified student receives a package of support that includes specialist teachers, specialist supports such as speech-language therapy, physiotherapy and occupational therapy, and teacher aide support. The level of specialist and teacher aide support that a child or young person receives is based on the learning goals of the child, whānau and their teachers.”

She says while the ministry “moderates the teacher aide allocation”, schools are always welcome to approach the MoE with requests for additional support. Asked why the funding for teaching assistants only applies for 39 weeks, she said, “the role suits a number of people to be able to work a smaller number of hours with some flexibility”.

Casey also talked about the three-tiered system put in place to fund additional needs in schools. She says schools receive a range of universal supports to help them provide inclusive and positive learning environments.

“For most children and young people, their needs are fully met within their early learning [preschool] service or classroom, through responsive and flexible teaching.”

The next level of help – “targeted support”– is aimed at children who need specifics, such as reading materials in Braille, or have English as a second language. Finally, there is the intensive, individualised learning support.

“For a small proportion of students, their disability, disadvantage, behaviour or progress needs are complex and require intensive, individualised or specialist interventions and supports.”

Teteina says the key issue is that children aren't resourced according to their specific need. Photo/Ken Downie.However, principal Riki Teteina says a child’s needs would have to be exceptionally severe to be considered for this, and he feels the universal supports put in place to sweep up children who can’t access the top level of specialist funding are falling short.

“Wrap-around support of tier 2 or 3 students needs to be targeted to support individual students and their families, rather than being generalistic,” he says. “Additional resources are available, but usually only for those who have been approved for ORS funding.”

Most worrying, not only does the MoE have no clear idea how many students in schools have an additional need (Casey says they estimate 8-10% are currently accessing some form of learning support), they do not keep any data on homeschooled children. This means there are no figures on how many children are learning at home due to exclusion or because their school was unable to meet their needs. As absences from school can be recorded as “justified”, there are also no figures on how many children are sent home because no learning assistant is available.

Deficit View

Bernadette Macartney was an early childhood teacher in the South Island when she had her daughter, Maggie, 16 years ago. Early on, Maggie was diagnosed with physical and intellectual needs. “I was the supervisor at the early years centre she attended, and so we’d go together,” she says. “I noticed the [MoE’s Early Intervention Service] people were really negative, and our philosophy and approach clashed.

“They would come to the centre with checklists about what a ‘normal’ child should be doing at Maggie’s age and compare her to those expectations – often she compared unfavourably. They saw it as their role to identify the gaps and help her catch up to her peers. Our focus was on valuing who Maggie was as a person and a learner, how and what she could learn, do and contribute – not what she couldn’t do.”

Later, when Maggie started school, Macartney found her daughter was being excluded, despite having funding for an assistant. “She would come home from school with her togs dry. The school told me there was a health and safety issue because she had to wear swimming pull-ups, but when I contacted the local council I was told this was fine.”

Maggie was allowed to swim for a short while, and then the togs started to come home dry again. “This time, it was that the learning assistant didn’t want to be in a changing room alone with her, and then later on she wasn’t allowed in the pool because the learning assistant said she didn’t feel comfortable going in.”

This was just one of a series of barriers to participation the family encountered over Maggie’s first six years at school. “So, we moved. We picked the school first – in Wellington – then we found the house and the jobs to go with it.”

That option isn’t open to everyone, and Macartney wanted to get to the root of the problem, so she did a PhD on the issue, critically reviewing her own family’s experience of school and that of another family with a child who has extra needs. “What I found was this deficit view of difference and disability.”

She concluded that “inclusion” wasn’t enough. For some schools, that meant a child simply being there. But to be truly included, she says, a child needs to feel valued and that they “belong”.

Father of three Giovanni Tiso says schools that actively enrol students who have a disability create problems for themselves under the current system. Photo/Nicola Edmonds.

Wellington-based writer and translator Giovanni Tiso has three children, two of whom have additional needs, and is a board member at their school, Berhampore Primary in Wellington. While his personal experience has been a positive one, he’s seen the challenges faced by other families.

“Until schools are rewarded for being inclusive, rather than penalised, I don’t think anything will change,” he says. “Inclusive schools have to devote resources to accommodate students with disabilities far in excess of what those students receive in targeted funding. In an environment where our public schools effectively compete for funding, this creates a perverse incentive not to enrol these students.”

Tiso says the situation was even worse under National Standards. “Poor results were penalised, but you couldn’t indicate anywhere in the results that a child had a disability,” he says. “My daughter always failed National Standards miserably; the school has to report their results to the Ministry and you’re not allowed to say that’s a child who shouldn’t be tested this way.”

Tiso says his school has had a constant battle with the MoE to be able to fund it the way the staff and board feel is best for the children. “Inclusivity isn’t a demand placed on schools, it’s something they have an option to be.

“If you go to a school that hasn’t made that choice, you’re going to be on the other side of a dividing line, with your child in the middle. You’re going to have to fight constantly for every bit of funding for your child, and the school will have to fight with the MoE – but that’s not something you as a parent should have to worry about.”

Riki Teteina believes the fate suffered by children with additional needs is symptomatic of an education system in crisis. Trish Grant agrees, and is pushing for an urgent review. “These kids, they’ve been back of the queue for long enough. The new government needs to make them a priority.”

Jai Breitnauer is a North & South contributing writer. This was published in the March 2018 issue.

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