Monday, December 14, 2015

Our day at Parliament

Last week Justine and I gave our oral submission in front of the Science and Education Committee of the House of Representatives.

Over the last few months, thanks to the initiative of Green MP Catherine Delahunty, the Committee has been conducting an official inquiry into school supports for dyslexia, dyspraxia and autism. As always in these matters – this is far from the first inquiry in the area of inclusive education – it is difficult to be very optimistic about the policy outcomes. In this particular instance the Ministry of Education has been busy conducting its own separate mini-inquiry, by means of a woefully poor round of consultation. I can’t imagine it will change course without putting up a big fight, labouring as it does under the illusion that things are basically fine and that tinkering is all that is required. Yet this is precisely the value of these exercises: to provide our political and administrative bodies with evidence to the contrary. Evidence that can be tremendously helpful when campaigning. Evidence that you can use the next time an official tries to tell you that everything is fine.

The inquiry received 440 submissions, most of whom are archived and can be viewed on Parliament’s website. In whichever order you choose to read them, they are a harrowing catalogue of systemic failures to look after our children. And that’s the other thing: taking part in these exercises can be quite distressing, but also cathartic. For many, it’s the first opportunity to be heard outside the small world of struggle and need that is often created around a disability in the family. You can go on living in that world for years without anyone ever asking not just ‘how are you?’, but much more importantly: ‘What is it like?’ This I suspect was the reason why as many as 174 people asked to be able to appear in front of the committee.

The inquiry was all those things even for us, who are luckier than most, as we live in a supportive community and have been able to share our experiences in other forums before. So we sat at the our table in the committee room in front of eight MPs, who sat in front of some men in suits (likely Ministry of Education officials) that nobody bothered to introduce to us, and prepared to say our piece.

Our written submission – which you can read here – included a discussion of the differences we encountered in the care of our diabetic son and the lack of care for our autistic daughter, and that’s the aspect we decided we would speak about. This, in the interest of documenting the process, is the short speech Justine gave.

You will have read our submission. We'd like to talk to you a bit more about the comparison between autism and diabetes, because our lived experience with each of these conditions allows us to see on a daily basis just how thoroughly the current system fails those with autism. We can also see how problems with this system could be resolved.

From the moment I carried Ambrose into the After Hours Clinic in 2011, the care we have received for our diabetic son has revolved around early intervention and support. We have always been made to feel we were partners with the medical team in helping him have a good quality of life. It was explained to us the day after we got his diagnosis that our goal should be to enable him to participate in society fully, and not deny him any experience because of his chronic disease. More importantly, we have been constantly supported in achieving this goal, and in fact the impression we have is that no other outcome is acceptable for the professionals we deal with.

Conversely, the lack of support for autism is the result of a completely dysfunctional system. There are the issues of the lack of early intervention and the lack of trust in parents and teachers, but the main issue is a lack of resourcing. When our daughter was diagnosed, we waited a year before getting any help at kindergarten and had to pay for our own teacher aide. Since then, we’ve always felt like we have to prove that she is disabled enough to get whatever scraps of assistance the Ministry feels they can provide. In spite of having dealings with some really wonderful staff, it is an ongoing lottery, which is very unsettling. We regularly get letters containing bad news that are disrespectful and uncaring in tone. Whenever our daughter's already inadequate support is reviewed, we know it’s likely she’ll get her funding cut, not kept the same – even though her learning needs become more complex as she grows up. This is our everyday life experience and it is very tiring.

You probably think that diabetes and autism are different conditions that require different types of intervention. But they are not in fact so very different. A diabetic child who is denied insulin and medical checks will die. An autistic child who is denied psychological and developmental support will suffer so much that many may as well be dead. If the objective of public education is not simply to allow children to go to school, but also to include them as equals, with strengths and weaknesses like everybody else, the two systems should operate in broadly similar ways: which is to say, by empowering families, schools and communities to care for and include both the boy with diabetes and the girl with autism.

We have an example of the state getting it right for our son. There is no reason why our daughter shouldn’t be able to have the same expectations in life.

After that, we were asked some questions: one designed to get us to say that it was all a matter of attitudes, and not of policy or resourcing, and two that engaged with what we had to say. The whole thing took ten minutes, and it was good to leave it behind us: it had been a nervous two-month wait for the day to come. At the same time we felt hollow, as one does when there is no prospect of a resolution.

While I’m on this topic, Hilary Stace and I wrote a long piece for the current issue of Policy Quarterly on inclusive education and the historical failures I have just described. You can read it here and I would really appreciate it if you took the time to do it. As in the case of the inquiry itself, it’s about making people aware of realities that are otherwise hidden to them – a task necessary to our politics.


Ben Wilson said...

Thanks for that Gio. I think it's a good comparison to make, even though the conditions are different. I can offer you another one - Marcus has issues that are much more similar to Lucia's, being mostly developmental. When ACC was able to actually decide to cover it, the level of support went from what you get - scraps that are thankfully taken and nowhere near enough, to immediately very good.

His progress has been fantastic, well above expectation, even of the therapists. His OT quipped that he'd made so much progress in this year that she was barely needed, although of course she is still really needed and will still be provided, and it's only because of the security we have in his ongoing support that such a joke could be made - to you that would be a veiled threat which you would (quite rightly) have to vigorously deny.

It burns me up that you can't get something similar. It's just not good enough. It would make a world of difference. I know this from personal experience of it having done exactly that.


Sarah Turnbull said...

Thanks Justine and Giovanni. Your comparison of Lucia's and Ambrose's care is a great example of the idiocy of our current systems, both health and education.

We all need to keep telling these stories. Again and again and again. Attitude vs resources? Well you can have all the will on the world but you won't make real and lasting change without a commitment to resource that change. Solidarity my friends. We will all keep telling our stories until they have no option but to listen AND act.