Dear Jacinda, our special needs kids need your help

Dear Jacinda,
I didn’t expect to be here. To be honest, I don’t think any mother expects to join the club 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 the first time I felt my baby move. I’d lie awake at night imagining the fun we’d have together. At this stage of my pregnancy, I was just like everyone else.


Piper came into the world unexpectedly on January 1, 2011. Before we knew it, she was almost 2 years old.
Suddenly she stopped copying words, couldn't 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, letting out ear-piercing screams for no apparent reason.
People stare and make snide comments, assuming you are a bad parent. The close friends slowly disappear, and your antenatal group no longer invites you to play dates. Your whole life slowly starts to fall to pieces and you’re left wondering how you got here.
After a long battle, Piper was diagnosed with autism spectrum disorder, or ASD. At 5 years old, she 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 other students and teachers as well. 
We were lucky to receive high ORS (Ongoing Resource Scheme) funding, but people who had never met her only allocated 10 hours of school support a week. How could she self-manage the remaining 20 hours of the 30-hour school week? We sought a review countless times, but were denied.
Eventually, I was forced to leave the fulltime career I had worked so hard to achieve due to the lack of support from the government. This had serious financial implications for us.
However, I’m not writing just to talk about my family; we are only one of the many families in New Zealand on this journey.
I’m writing because we need help. My daughter's mainstream school is facing huge financial pressure due to the current funding model.
They have 24 ORS funded students and follow their legal obligation of providing an inclusive education to all children, never closing their doors to a child with special needs. This has left them with a deficit this year of $118,482.26.
Here's how. A school receives $18.47 per hour for an ORS funded student before the deduction of GST, holiday pay, sick leave and ACC, leaving $15.90 as the actual per-hour cost.
The average teacher aide (TA) wage at my daughters’ school is $19.47, due to the specialist skills some students require. This difference of $3.57 per hour for a large team of TAs paid over 45 weeks of the year works out to a deficit of $118,482.26 this year alone.
It seems that the schools who follow the law of inclusion are punished by being unable to meet their financial obligations. Yet schools who resort to managing these high-need, ‘expensive’ children by excluding them for disruptive behaviour are rewarded. The system is broken.
My daughter is an example of how drastically a child can improve when fully supported by an inclusive education system.
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, participates in kapa haka and has recently joined the school's singing group.
All children deserve the same right to flourish. 
I know there isn't a golden bullet to solve this, but if we continue to do the same thing and expect a different result, then we are mad.
I’d love to see a taskforce established that includes representatives from finance, principals from significantly 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!
Yours sincerely,
Erika Harvey - Piper's mum
The full version of this letter can be read here. Erika Harvey ispetitioning Government to fully fund inclusive education - read more and sign here. 

Original Article: 
https://www.stuff.co.nz/life-style/parenting/103332689/dear-jacinda-our-special-needs-kids-need-your-help