The story of Ava Crager isn’t at the top end of discrimination and neglect against children with disabilities in New Zealand. After all, it resulted in her missing a single week of school, when there are children who miss months or even years – to say nothing of those who attend regularly but are marginalised, secluded or excluded from the curriculum and the social life of their schools. The ministry of education doesn’t keep data on any of these outcomes, so the stories we hear must always be treated as the tip of a very large iceberg.
This iceberg has been floating at the edge of the public consciousness for over twenty years, since the introduction in 1995 of the current regime for delivering what used to be called ‘special education’. The phrase is in bad need of updating, but I’m going to use it anyway – albeit in scare-quotes – for it is essential for understanding the institutional logic at work.
And that is the virtue of Ava’s story: not that it is more appalling than others or has resulted in greater discrimination and hardship than others, but precisely that it is so common, so quietly absurd, as to fully illuminate the workings of the current system – and why it needs to be dismantled not just as a matter of justice, but also of basic decency and sanity.
Here’s the story, then, briefly, as told this week by Radio New Zealand reporter Laura Dooney.
Ava is a 12 year wheelchair user who relied on the ministry of education’s taxi service to go to school. Back in March, she moved with her family 5 minutes down the road. The parents knew ahead of time that they needed to fill out a whole new application for the taxi service in order for the car to come to the new address, and allowed 20 days for processing. The ministry took 7 weeks to approve the ‘new’ taxi service. When the family asked what was taking so long, they explained that Ava wasn’t the only child on the waiting list. The school provided transportation at its own cost, so Ava ended up missing one week of attendance. The Cragers were left feeling lucky that their situation was resolved, knowing very well that other families are routinely put in even more stressful situations.
This story has a bit of everything. The institution normalising its failures, and passing the blame on to disabled children for existing (‘there are many others in your daughter’s situation’). The odd mix of relief and gratitude felt by the family when the entitlement was eventually restored – a feeling that everyone who has spent any time in the system knows so very well. And, above all, the Kafkaesque contortions of the rationing mechanisms, which generate costs both human and financial at every turn under the guise of fairness and accountability. Specifically, and most obviously: the ministry’s complaint that its own waiting lists are so crowded fails to address the fact that this is due in part to families like the Cragers having to reapply for the taxi service every time they move to a new place. (I heard this week from a family who had to do it after moving within the same street). Asked by Dooney to explain this fact, the ministry answered by repeating the question (‘every time a family moves, a new application must be lodged to verify their eligibility’), a clear indication that they have lost any sense not just of their purpose, but also of reality.
As things stand, the current system consistently fails to address the needs of the children under the ministry’s care. As not just countless human-interest stories but several government reviews have documented, it is discriminatory, tortuous, wasteful, and has damaged the educational prospects of entire generations of disabled students. We have known these things for years. And while the new ministers in charge of education and disability seem aware of the magnitude of the problem, and well-intentioned in their call for a comprehensive overhaul, I want to sound a couple of notes of caution.
Firstly, the Clark government also came in with good intentions and did nothing beyond conducting a review and then ordering a second review which was completed under National. Further to that, they had nine years – there is no guarantee that this government will last as long. (The other lot doesn’t think there even is a problem.)
Secondly, I worry that the overdue and sacrosanct realisation that the problems are wide-ranging and systemic could become a recipe for inaction. Case in point: besides a raft of budget measures that pumped more money into a bad system, the government hasn’t announced any actual plan outside of Chris Hipkins’ vision for long-term reform of the entire education system. But again, we don’t know that the government will last long enough to see any of it implemented. And in the meantime, obvious, elementary steps such as finally funding the management position of learning support coordinator in every school are being tied to the current round of industrial negotiations between the ministry of education and the primary teachers’ union, NZEI. Meaning that teachers will have to give something up so that disabled students are better included in their schools. This shouldn’t be the union’s job.
So, here’s my proposal. We’re all sick of waiting. So fucking sick of waiting. And our children can’t afford to wait any longer – we are wasting so much potential, so many lives. Time’s up. From now on, every need is to be automatically provided for with fully funded supports unless the ministry of education can prove that the need doesn’t exist. I say my child has autism, or is in a wheelchair, or has a learning impairment. Her teachers and – if applicable – the local DHB concur. You disagree? Fine. Prove that she doesn't. In the meantime, cough up the money for the supports that are needed in order to remove the barriers to her full inclusion at her local school. Let’s see you fill out some forms for a change, spend some of your own money on private psychologists and consultants. Let’s see if you are still eligible to call yourself a Ministry of Education, and not the Ministry for Educating Some of the Children.
Are you worried that opening the floodgates – that is to say, eliminating all your neurotic requirements for compliance – will make you spend too much money? I’m not sure that it will. Besides, whose money are we talking about? Pretend the money Ava’s school spent on getting her to class for six weeks came out of your budget. Pretend it was you who filled out the forms her parents had to fill out. Pretend it was you who spent the 35 hours it takes on average to fill out an ORS application. It is you who has to assess it. It is you who has to defend the families’ appeals. But all of this is money and time spent by New Zealanders. It is all of us. You’re costing us too much, in order to achieve far too little.
And then so what if costs should balloon? It will force you to finally sit down with the disability community and the teachers and the researches to design a better system. A system that pools knowledge and human resources and invests more rationally while still ensuring that all children receive a quality education. Besides, you saved money that didn’t belong to you for over twenty years. It belonged to some of our most vulnerable students. It’s time to give it back.
Thanks for reading this. Early feedback has included some people despairing that we could ever implement something of this sort, that it's too far from what we have now. Nonsense. It's up to us to create practical utopias in local schools - show how things could and should be done - and demand the changes that are needed for those utopias to become the norm. My model for what can be achieved is the mental health reforms in Italy, which went much further in a much shorter span of time. I wrote about them recently for Overland and if you feel overcome with pessimism (as we all do from time to time) I suggest you take a look that bit of history. It's something that happened, and it was a struggle from below.
Posts
