Faith in numbers

An update on our dealings with special education, to document and reflect upon a recent experience.

These days if your child receives targeted school funding on account of a severe disability, you no longer risk dropping out of the scheme if she ‘improves’ too much, but you still have to go through periodic reviews of the level of support she’ll receive. This is a process known as moderation, and it works on the principle that there is a fixed budget, and that it should be distributed according to need. Consider that we’re talking about children with the very highest needs in the country. The top percentile. Recall also that to access to the scheme is by way of a very strict competition (we’ll call it ‘New Zealand’s Got Needs’). So this logic of apportioning of the budget – or pulling of the much-too-short blanket – neatly follows. We evaluate. We award. We moderate. The Education Ministry, in fact, has stopped referring to targeted funding as a provision. It’s now a contribution, presumably on the grounds that one could complain that a provision is inadequate, whereas a contribution amounts to less than what you need by definition.

So from the beginning your child has partial rights. Subject to resourcing. Depending on the needs of somebody else. A warped principle of equity operates here, as if the goal were to ensure that everyone misses out to the same degree. But with a perverse twist, in that if a successful programme has caused the child to find the school environment less disabling, this will lead directly to a reduction of the funding that goes towards that programme. The message to the child is this: overcome the barriers that surround you at your peril.

Moderation involves rating the child according to seven categories: Physical Tasks and Mobility, Sensory, Learning, Eating and/or Drinking, Communication, Behaviour, and Toileting. Each category is rated from 0 to 4, where 0 indicates ‘typical age of peers,’ thus requiring ‘no supervision/support beyond school’s regular systems,’ and numbers 1 to 4 indicate the need for increasing levels of support in order to enable the child to be at school, with descriptors that vary according to each category. So, for instance, a rating of 4 under Communication is described as follows:

Student requires total support to engage in all communication activities. Alternative and/or augmentative systems are always required. Specialist support and programmes in place. (Emphasis as per the original.)

It’s demoralising to face an institution such as the Education Ministry when it reverts to the deficit model or, worse, asks you to follow that model to describe your child. Our regular meetings around our daughter’s individual education plan are all about developing her strengths and understanding the complexity of her relationships. But today we’ve gone back describing in painstaking detail how much she is less than her peers. As always, we’re familiar with the game: she needs to score highly, that is to say, badly. This afternoon, in this room, we’re going to be happy that she can’t tie her shoes, and do lots of other things.

We heard the stories about the old reviews, when you could still fall out of the scheme, about parents doing things they knew would make their child distressed so he would be at his worst in front of the assessor. This process and these forms are benign in comparison. There is something almost comforting about their plain pragmatism, and we find we can come to an easy agreement about most things. But it’s in the detail of the process that you lose sight of the whole picture.

We have spent the last hour rating our daughter under all these categories, building a profile that is – in a disheartening way – perfectly accurate within the parameters provided. It’s true for instance that she requires ‘high levels of support to understand and respond to instruction related to typical routine and social interaction’. It even sounds like the kind of information that might help someone respond to that particular need. But what counts isn’t the description, it’s the number. That number is 3. And not only all 3s under Communication are alike, but a 3 under Communication is the same as a 3 under Behaviour, just like a 4 under Learning is the same as a 4 under Eating or Toileting, in that they all contribute to the overall score in the exact same way.

Once the scores from each category have been added up, even that flawed, incomplete picture of the child disappears, leaving just the bigger number. Say, 21. This is the number that the institution needs, since it cannot deal with the description, much less with the story, less still with the layers of context that surround it. Even if one subscribes to the deficit model, a 21 could be made up staggeringly different combinations of physical and intellectual disabilities or impairments. But to the institution, a 21 is a 21, and all 21s are alike. Equivalent, model children to split financial resources between.

The reality of having children at school and enabling them to access the same education as everyone else is a conceptually different kind of problem. It requires thinking of a school’s grounds, of a school’s culture, of the education system itself as the thing that disables, and being prepared to change them. And it is the opposite of rating need. All needs – including the needs of ‘ordinary’ children – are irreducibly complex, and require answers that are infinitely creative. That is the space in which our best teachers work. How we go about supporting them to do this work is a problem, but not one that can be solved with a magical faith in the equivalence of numbers.

We are very fortunate that our local school understands all this – that that they are determined to see our daughter whole, and not as the sum of her discrete shortcomings. But even now we are anxious of what will come after. There is little security for those who depend on love and luck.