Prime Minister Jacinda Ardern shares a picnic with children from Paihia Primary School on February 5, 2018 in Waitangi. (Photo by Phil Walter/Getty Images)

Dear Jacinda: A letter from the mother of a child with autism

‘Every child in New Zealand deserves the support they need so that they can succeed in education,’ said Labour during the election campaign. Now it’s time to back up those words with real funding for children with autism and other special needs, writes Erika Harvey.

Dear Jacinda,

I didn’t expect to be here. To be honest, I don’t think any mother expects to join this club that I’ve found myself in. You see, I was just like you once. I was at the top of my career eagerly awaiting my scans to know everything was okay with the miracle I had growing inside of me. I remember that first feeling when she moved and how I’d lie awake at night imagining the fun we’d have together. The family adventures we’d go on, the friends she’d make, answering all those silly questions kids have about life. When I was six months pregnant I saw a child screaming and hitting his mother while I was out shopping. The mother spoke calmly and asked if he wanted to leave. I couldn’t believe she didn’t even discipline him for acting like that! I knew I’d never be a bad parent like her, when my child was born.

At that stage of my pregnancy, I was just like everyone else. Piper came in to the world unexpectedly with my water breaking on 1/1/11 and before we knew it, she was almost two years old. Suddenly, as if someone flipped a switch, she became lost inside herself. She stopped copying words, could no longer grip a spoon, and started crawling instead of walking. It’s a feeling you can’t describe when your gorgeous, perfect child goes from hitting all their milestones to hitting themselves and others. When you try and catch their head before they slam it against a concrete floor while expressing ear piercing screams of pain for hours, for what seems like no reason at all.

People stare and make snide comments behind your back, assuming you just have a brat as a kid and you’re a bad parent. The close friends you have slowly disappear, and your antenatal group no longer invites you to play dates. Not because they don’t want to, but because your child is constantly unsettled and it’s probably easier for you that way. Your whole life slowly starts to fall to pieces and you’re left wondering how you even got here.

The hardest part of motherhood, though, was when I officially received Piper’s diagnosis of autism. We immersed ourselves in education unlearning everything about parenthood we knew. We enrolled in various workshops and met others who were on their own journey through the spectrum. But no one could prepare us for what would happen once our daughter turned five and we needed to think about where to send her to school. At five years old Piper was still in nappies, had violent outbursts, would strip all her clothes off when she became overwhelmed, was a flight risk, couldn’t communicate, and was not only a danger to herself but to other students and teachers as well.

We were extremely lucky to receive high ORS (Ongoing Resource Scheme) funding, but people who had never met her only allocated 10 hours of support a week. This was inadequate for Piper and the school, given there are 30 hours in a school week. She couldn’t self-manage the other 20 hours. The school had try and find funds to make up the difference when my daughter first started, due to the severity of her needs.

We sought a review of our ORS countless times but were denied. Eventually, I was forced to leave the career I worked so hard to achieve. The financial implications for our household have been drastic. With only 10 hours of support for Piper, and no after school or holiday programmes in Tauranga for children with special needs, it was impossible for me to continue my career full-time.

A million questions go through your head when you find out you’ve moved into the special needs parent club. You try to figure out how it happened, only to realise it doesn’t matter because you can’t change the past. The only thing you can do is focus on the future, and that is why I’m writing you today.

Since April is Autism Awareness month, I wanted to explain what life is like when you become a parent to a child with autism. Most of all, though, I wanted to talk to you, Jacinda, mother to mother – so you can put yourself in our shoes as you eagerly await the birth of your first child. Truth is, there are 65,000 Kiwis on the autistic spectrum and more being diagnosed every day, and with estimates that 1 in 4 students need some sort of support in school, the chances of experiencing this firsthand are pretty high.

I’ve seen some massive flaws in the system that should be addressed, not just for children with autism but for any child that needs additional support. I understand how impossible it must be to try and splice limited funds in such a way to please every needy group, however children were a central focus to your election campaign, as they should be for every voting New Zealander. I’m tired of the blame game between a National led government and a Labour led government, only to find our pleas for help become a publicity stunt with the children of New Zealand paying the price.

We must unite, to bring material change to life in a way that will matter.

“Only a Labour Government can deliver the resources that schools and parents are crying out for and we plan to invest an additional $4B in education.” [link]

“I say there are clear signs of a government that has its priorities all wrong. Labour will redirect funding to frontline staff working directly with schools and children. Every child in New Zealand deserves to get the support they need so that they can succeed in education. They aren’t getting it under National, they will get it under Labour.” [link]

“Re-carving the same size pie amongst a growing number of needy kids will simply result in more going hungry. It’s time the National government woke up to the damage their underfunding is doing to kids’ lives and futures.” [link]

“Our goal is to uncap the ORS funding and make sure that every child in our schooling system has a right to learning support that they need and that schools are supported properly, and that those who work in our schools as teacher aides are supported and funded properly and actually have pay equity within the system they are working in.” [link]

If schools have a legal obligation to create a truly inclusive education system, what funding model is required to achieve the dream?

As a business consultant, I learned that the school my daughter attends is under huge financial duress due to the current model. It is a Decile 2 school, with a roll of 390 students from over 12 different cultural backgrounds; its catchment experiences a wide range of socio-economic disparity. It also has arguably one of the highest number (24) of ORS-funded special education students in a mainstreamed school, in addition to High Health, RTLB and special education and behavioral support requirements etc. The school’s success in assisting their ORS-funded students (to which they refer to as their ‘treasures’ because they have added so much joy to their school) is actually sinking them! Their deficit this year is $118,482 but they continue to follow their legal obligation of providing an inclusive education to all children, never closing their doors to a child with special needs. Meanwhile other schools find ways to manage these high need, ‘expensive’ children by expelling them for disruptive behavior, forcing many parents out of work and in to homeschooling.

I’d like to talk to you about the numbers.

It’s my understanding that under ORS, a school receives $18.47 per hour per student before the deduction of GST, holiday pay, sick leave and ACC – leaving $15.90 as the actual per hour cost allocated (less than the new minimum wage). Although the funding rate hasn’t changed in many years, teacher aide rates increase every year, widening the funding gap between what schools receive to pay for teacher aides, and what they need to pay in teacher aide salaries. Many schools top up the funding gap by using their operational grant, or even ​fund-raising via their parent support groups, but that still isn’t enough to cover the deficit at my daughter’s school.

The average teacher aide wage at my daughter’s school is $19.47 per hour due to the specialist skills some students require, leaving an average deficit of $3.57 per hour, per student, over 45 weeks of the year, including holidays for their large team of teacher aides. This means the school will have the deficit of $118,482 to meet their commitments to the students who require additional support over and above the allocated funding this year.

This school has truly become victims of their own success, with my daughter proudly one of their success stories. In the two years she has been supported by this school the change in her has been drastic.

My once angry, non-verbal child no longer takes her clothes off in public, and can be found each morning on the school radio, or singing songs at assembly. She is obsessed with Māori culture and participates in kapa haka and has most recently joined the school’s singing group. The school participates in RDA (Riding for the Disabled) and she can be found at the top of their website demonstrating her sweet and loving nature, and is an example of how drastically a child can improve when fully supported by an inclusive education system. As much as my daughter learns from the other students, they also learn from her and understand that we are all different, but all special in our own ways.

Since this school is so successful at polishing its treasures so their individual brilliance can shine, they are now attracting more and more children who require learning support. Parents have heard about this school and have started to move into the school zone so that their special needs children can attend. In some cases, they only bring their ORS children, which increases the financial burden even further.

The solution

I know there probably isn’t a silver bullet to solve this, but if we continue to do the same things and expect a different result, then we are mad. I would love to see a task-force established that includes representatives from finance, principals from especially affected schools such as the one mentioned above, teacher aides, and a couple of parents like myself. As a business consultant, I’m used to looking for new models to solve old problems and I’d be willing to work with you and others to get the job done!

Please let me know when it would be convenient to meet with you so we can truly start to work together and make the difference that was at the heart of your campaign.

I look forward to hearing from you.

Yours Sincerely,
Erika Harvey
(Piper’s Mum)

Erika Harvey lives in Tauranga and blogs about her journey through the autism spectrum with her daughter Piper at piperslove.com, where this piece was first published.

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