Dyslexia: Tauranga parents call for access to funding after children diagnosed

Being diagnosed with dyslexia made a “big difference” to Heather Down’s son. Teachers understood he wasn’t “just slow” or not paying attention in class - but she had to fork out hundreds of dollars to get the support he needed.

The Dyslexia Foundation of New Zealand says schools do not have the resources to support children with dyslexia and paying for a diagnosis was an “absolute reflection” of the Ministry of Education’s policies not working.

But the ministry says a range of learning support is available for students’ “specific needs” diagnosis or not.

The foundation estimates one in 10 New Zealanders have dyslexia. The ministry says it does not collect information on the number of people diagnosed with dyslexia in Aotearoa.

Heather Down’s son was diagnosed with dyslexia at age 11 - she believes there should be access to public funding to get a diagnosis. Photo / Alex Cairns

Heather Down’s son, who did not want to be named, told the Bay of Plenty Times he struggled with maths, reading, writing and spelling.

The 16-year-old said people thought he was “dumb” and he felt “left behind” during his early years of schooling.

He said words would “jump around on the page”.

“I was trying my hardest but my hardest isn’t as good as everyone else’s.”

After getting a dyslexia diagnosis at age 11 through the not-for-profit organisation Speld New Zealand, he received “a lot more help” such as getting a laptop to write notes, extra time on tests and a reader-writer. This made “a big difference,” he said.

“Teachers understood I wasn’t just slow or not paying attention.”

Without his diagnosis, it would have been “real hard” to get his NCEA level one, he said.

He planned to leave school after achieving NCEA level two and had considered joining the Army, going into a trade or becoming a crane driver.

Heather Down is a specialist literacy educator and helps students with specific learning disabilities. Photo / Alex Cairns

Down, a specialist literacy educator at Love Literacy Mount Maunganui, said her son struggled with reading and writing, even after being at school for six years.

She said the diagnosis process was “reasonably straightforward” but “the most inaccessible” part was the cost.

The family paid between $500 to $1000 and travelled to Whakatāne to get the diagnosis. She believed there should be access to public funding to get a diagnosis as the dangers of undiagnosed dyslexia included a decline in academic achievement and limited career opportunities.

Down said she had a teaching background and underwent further studies to support her son.

“I felt like I could be able to support other families to navigate their way through dyslexia based on our own experience.”

Callum Fullick, pictured at Double Island Point in Australia, has been working overseas on the ski mountains. Photo / Supplied

Former Tauranga student Callum Fullick, 24, said he found concentrating at school “very difficult”.

Fullick, who lives in Australia, said his dyslexia diagnosis helped “a little bit” as teachers knew he struggled so they helped him more.

He said he followed his dreams and found himself doing ski seasons, travelling the world and meeting new people.

His mother, Ali Fullick, said Callum was diagnosed with dyslexia and borderline ADHD at age 9.

He experienced difficulty learning “as soon as he went to school”. He would come home “grumpy” and was perceived “as the naughty kid”.

After his diagnosis, he got a Speld New Zealand tutor. At age 16, he left school to work on ski mountains, she said.

“He’s managed to find his niche and be very successful in the job that he does and he loves it.”

Fullick said Speld New Zealand did “an amazing job” supporting her son. She paid about $600 for the diagnosis.

She believed “everybody should have free funding” through the Ministry of Education to access diagnoses for learning disabilities.

Fullick said became a Speld New Zealand tutor to be “an advocate” for Callum. She works independently for herself teaching structured literacy and works for Speld New Zealand.

Dyslexia Foundation of New Zealand chair of trustees Guy Pope-Mayell.

Dyslexia Foundation of New Zealand chair of trustees Guy Pope-Mayell said “in a perfect world” schools would identify children who learned differently and diagnose them accordingly, ensuring they got the support required.

“In practice, it’s a very different story.”

Pope-Mayell said some schools would diagnose and support their students, however, “many schools don’t”.

“The failsafe way is to get a diagnosis - it is an absolute reflection on the fact that the Ministry of Education’s policies don’t work and schools generally don’t have the resources to be able to do everything that they can for a child.”

Getting a diagnosis was an “equity issue” because “not everybody can afford a diagnosis”.

“This diagnosis issue is even more relevant for the lower-decile schools who won’t be, on average, delivering the same level of diagnosis and intervention.”

Speld New Zealand executive officer Jeremy Drummond said the “worst-case scenario” of undiagnosed learning disabilities included children becoming disengaged from school and truanting.

“If you could’ve kept that child engaged, they would’ve completed high school, they would’ve been able to read, they would’ve been achieving more than NCEA level one if they’re lucky.

“It affects them, their mental health, their wellbeing and it also affects society with all of the expense on the courts, the corrections, the health system. It isn’t just an education problem.”

Drummond said it had a membership subscription costing $120 a year or $75 a year for community service card holders or those experiencing financial hardship. For people seeking a diagnosis, Speld referred them for an assessment which cost between $700 and $1000.

Ministry of Education operations and integration hautū (leader) Sean Teddy said support for children focused “first and foremost” on an “inclusive design of the curriculum and learning supports as part of everyday teaching and learning”.

He said the ministry had tools and resources freely available to teachers to support the understanding of dyslexia online.

Asked if the ministry was considering allocating public funding for people to access a dyslexia diagnosis, Teddy said access to learning supports was “needs-based not diagnosis-based”.

For that reason, the ministry did not provide funding specifically for people to get a dyslexia diagnosis.

A range of support was available to schools that responded to the specific needs of students - with and without a formal diagnosis, he said.

Teddy said “more targeted and tailored supports” for students were available when needed.

Many schools had a SENCo and/or learning support coordinator who supported teachers with planning for someone experiencing challenges in their learning. Schools also had access to specialist teachers for literacy, behaviour and learning support.

Teddy said schools could access ministry-funded professional learning and development that was “relevant to their learning community”. Schools also had funding in the operational grant which they could use for accessing external providers.

Any teacher interested in a post-graduate diploma in specialist teaching could apply for a ministry-funded study award, he said.

What is dyslexia?

Dyslexia is a specific learning difference that may cause unexpected difficulties in the acquisition of certain literacy and numeracy skills.

Brain research, including studies by Yale and Auckland universities, has shown that while it is common to use the “verbal” left side of our brain to understand words, dyslexic people use the “pictorial” right side – making them slower to process and understand language, but stronger in creative areas like problem-solving, empathy and lateral thinking.

Skills that may be affected can include auditory and information processing, planning and organising, motor skills, short-term memory and concentration. Some of these can make it especially challenging for individuals to follow instructions, turn thoughts into words and finish certain tasks on time.

Common signs of dyslexia include reversing or confusing letters or numbers, frequent misspelling of words and mixing up words that sound similar (recession/reception), in speech or written work and needing repeated exposures to retain learning.

- Source: Dyslexia Foundation of New Zealand

Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.