Parents, advocates report tough battle to get support for autistic kids in schools

Friday, 29 April 2022

Harris Wright is passionate about animals, letters and puzzles. He loves photos and hugs. He also has a tendency to run.

The 5-year-old, who has autism, is due to begin at Burnside Primary School on Monday.

But the start of his exciting journey has instead become the struggle to secure enough teacher aide support.

Amy Wright and her husband Michael (a Stuff journalist) are two of many parents who have applied, and been rejected, for the Ongoing Resourcing Scheme (ORS) – which is funding for the highest-need kids in school.

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Wright is among parents and advocates who say the current funding criteria is unfair and restrictive for high-needs kids, and who hope a Government review will force change.

“It’s really important [autistic kids] feel welcome, to be part of school, and to be able to participate. To me it’s a right that Harris should be able to go to school with a little bit of help,” she said.

Harris has received High Health Needs funding from the Government, which will allow two hours of a one-on-one teacher aide support a day while he transitions to school.

Wright doesn’t know how long that will last and says it’s too short-term.

Harris has limited language for his age, and no sense of personal safety. He runs away, sometimes when overwhelmed, and can’t tell people where he has come from. His parents have twice needed to call police to find him.

“You are just terrified. You think he’s dead. That’s what you think.”

ORS funding would provide a long-term teacher aide who could ensure he’s safe and help settle him at basic tasks.

“Harris needs a teacher aide to help him sit on the mat in class… He can’t go out in the playground, you couldn’t trust he wouldn’t run away and go somewhere he shouldn’t go.”

The current system fails autistic kids, she said.

“You have to do this huge application, which is lots of work, and you have to speak about all the terrible things your kid does. We didn’t, but that's not a very nice thing to do your own kid to massage the system.”

After 20 years, the Government is looking again at ORS funding as part of its Highest Needs review, launched last year.

ORS is not just for autistic children – it is for those assessed as having the highest ongoing needs for specialist support at school.

Currently, 1.31% of all students receive the funding. A student must meet nine criteria, and the support lasts for the entire time they are at school – including speech language therapists, psychologists, occupational therapists, physiotherapists, advisers of deaf children, and mobility instructors.

In its rejection letter, the Ministry of Education acknowledged Harris had behavioural challenges but also said he had developed some communication skills, reading and number skills and did not present with “extreme levels of distress”, so he was unable to meet the criteria needed for long-term funding.

But Autism New Zealand Chief Executive Dane Dougan​ said autistic children often had to “tick every single box” to access enough support, creating an unfair system.

It was common that a child who scores highly in reading, but who has real problem crossing the road, might not get the funding because they rate too highly in one area.

“The stories that we hear from our community a lot is that if you frame any of the application in a positive way, it makes it more difficult to get funding. It shouldn’t be that way.”

Support should be based on individual need, as every child with autism was different, Dougan said. He hoped the Government’s Highest Need Review would create a more strengths-based approach to support in school.

Kelly Watson is the mother Dylan, who also has autism, and a teacher aide in a Christchurch school.

Watson was granted full ORS funding and her son now attends a specialist school – he can’t talk and has so far been unable to be toilet trained, reliant on adults for almost everything.

In her work and in the autistic community, Watson said she sees many children missing out on adequate support.

“For me I am so grateful Dylan is balls-in-your face obvious, because things have come easier to us, with the funding.”

She believes more funding assessments should be based in person, to rule out misinterpretation.

In response to Harris’ case, the Ministry of Education’s Sean Teddy said its local office has supported him to transition to school, including providing a safety plan that will be regularly reviewed.

He said the Ministry of Education does not collect data on the numbers of autistic children receiving funded support services in New Zealand.

Associate Minister of Education, Jan Tinetti, who launched the Highest Needs Review, said ORS was designed for the 1% deemed in most need of ongoing, high-level support.

Students who did not meet the criteria could receive other support, and teacher aides could also be accessed through Learning Support funding, ACC or other government sources, she said.

The Highest Needs review will be complete by late this year.