Tonight, the current affairs show “Campbell Live,” produced yet another story about the education system here in New Zealand letting down children with special needs. The story is entitled “Struggling through the system.” It is about a 13-year-old girl who performs academically at “Level One,” basically at the level of a five to six year-old. She has 2q37 deletion syndrome, which has significantly impacted on her ability to learn and her ability to carry out basic physical skills; she has an obvious and established intellectual disability. (And for my autism readers, as you may suspect, it is associated with autism too; “About 25 percent of people with this condition have autism.” It is however an extraordinarily rare condition.)
Yet despite this child’s obviously high needs – for educational, physical and social interaction supports – she apparently will not qualify for any government funding at high school next year. Not surprisingly, the prospect of high school without adequate support, is is a daunting and seemingly impossible one in the mother’s eyes. The mother has fought for supports – she has a file full of denied applications – but she feels she’s now left with little option but to keep her child home from school rather than dump her in a mainstream high school.
(I intentionally use the word “dump” here, since I am strongly opposed to those who claim special needs children are “dumped” at special schools; I feel the reverse is closer to the truth, that special needs children are dumped in mainstream schools these days. I have written a post on this previously for those interested in that aspect of this debate.)
I’ve become sceptical of these local media stories about special needs funding, since they rarely confront and explain the complexities and varieties of special education resources available in New Zealand schools. In my experience, the media tend to simplify these issues to the point of very real distortion. Also, a large number of these stories seem to be about the parents holding tightly to an ideology about mainstreaming always being the better option than special needs schools, even when the stark reality for their child is high needs requiring the services provided through a dedicated special school.
But that was not this story.
This mother recognises her child’s needs, and has no ideology blinkering her to what may be in the best interests of the daughter she has (instead of the daughter she wishes she had). She appears to be a very engaged and accepting mother. Her pain and frustration with the education system is heart-rending, and fully understandable. How is it even possible, that her daughter does not qualify for ORS, or any of the lesser funding options? From what I could see on the Campbell Live story, the child neatly fits criterion 5, almost to the word. For example: “Towards the end of their schooling students who meet Criterion 5 will still be working within Level One of the New Zealand Curriculum…” (feel free to click-through and read the rest of the criterion too, it seems to fit her very well.) I’m no expert on ORS, but I am somewhat familiar with it, and my son receives it. I really struggle to see why the girl was rejected.
Of course, ORS funding is for those with the most need; those who are most severe. According to the Ministry of Education, this girl is not severe enough (despite apparently neatly fitting into their criteria). I’m sure they know more about the child than I do, and about the severity of those who are consider worse than her and therefore fitting into the system. But at some point these decisions quite simply appear to depart from common sense. This child doesn’t even appear “border line” to me; she clearly needs very real support at high school. Furthermore, without that support, the mother – who knows her child better than anyone – feels she simply could not send her child to school. And I think in her position, I’d feel and do the same. It was how I felt before my son was granted ORS funding. Her desperation, confusion, fear, are emotions so many parents of special needs children go through waiting to hear about, and when left without, adequate (or in her case, any) special education funding.
The child was receiving adequate funding to attend primary school – including an aide – but now she’s to be left without. Why? Did she suddenly lose her diagnosis? Take some monumental leap in development that disqualifies her because she’s too capable now? According to the Ministry, it’s a potential “yes” to that second question, since she has learnt to read. That’s right, she learnt to read. Nowhere in the ORS criteria do I see “learning to read” being an exclusionary consideration. How does “a 13-year-old child learnt to read” prove they no longer need help? My son can read, as can many of his classmates. They all receive ORS (though yes I recognise many of them will come under different criteria than criteria 5, but I stand by my observation as relevant).
What this comes down to is a judgment made by the people at the Ministry of Education, and it appears to be an erroneous one. They have processes for disagreeing with decisions they’ve made, I have no doubt at all that the mother has been working her way through that hefty re-application bureaucracy already.
I want to have faith in our education system. I keep hearing how we supposedly have world-class standards of teaching and education here. So why are we so clearly and constantly failing the neediest students? How can we hold our heads high in education in this country, when we put our most vulnerable students – and in turn their incredibly vulnerable parents – through this hell. Why is it so confusing and unclear why one child gets the funding, and another falls short; there appears to be a serious lack in consistency and transperancy.
I get that special students are the hard cases, and that we should be careful about judging a system by the areas where it is the most challenged, the system may be succeeding for the majority of students (the “normal” students, but I understand this claim is highly questionable too). But when the minority that is falling through the cracks, is a group of people who had no say in the hardships they faced – who are innocent of any wrong-doing and have done everything the state has told them to do and then some – you’ve got to see that something is very wrong with the way the system is set up.
I feel for this woman, and this lovely child. I don’t know how to help them. Teacher unions revolt when their own mainstream jobs are under threat. People protest on the streets when the country’s assets are for sale. Where are the masses crying foul for these families? How many crying desperate innocent families talking about the same system failures, do we have to see on the television or newspaper each week, before people demand change? Or are families like mine – like this girls’ – too different, too “other,” to grab the public’s mainstream conscience.
At least “Campbell Live” is making the effort to bring this to the public attention. What the public – what the government – does with that, is yet to be seen.
I’ve decided to add a poll to this post, to get a feel for the public sentiment towards, and experiences with, New Zealand’s special education system: