Sunday, 12 April 2009

Fight on

Guest article by Sue Corrigan

When I returned to Australia from the UK with my son just over a year ago, it was with the dream of establishing a Foundation in my late husband's memory and raising enough money to establish a CE centre for adults in this benighted neck of the woods. It was the most socially useful thing I could think to do with myself, and seemed the best way to promote the benefits of CE to a still-scoffing Australian disability Establishment.

For a whole range of reasons, though, I soon realised it was simply too hard. Way, way too hard. I don't like admitting defeat - in fact I hate it - but it was going to require raising several hundred thousand dollars a year, every year, and I'm widowed, I'm my family's sole breadwinner, I have three children, one of whom is very severely physically disabled - and I simply couldn't do it.

Besides, the thought of endlessly arguing about the benefits of CE with smug, complacent, ignorant bureaucrats, doctors and charity officials etc, etc was way more than I could cope with and simultaneously stay sane.

CE's problem is that it is just too brilliant; too stand-alone, out-of-the-box unique. The medico-disability establishment doesn't want to know about it because it's an educational, not medical-based model; and the educational establishment doesn't want to know about it because it's too much actively about therapy, all mixed in with learning in one giant holistic jumble - and they don't do therapy.

Politics: let the parents choose

So I've decided to skip Andrew's third stage, for the time being at least, and move straight to the fourth. Fundamentally this (like everything else) is all about power structures and the only sustainable way forward that I can see is for parents to have far more power and control and say over how the money ostensibly allocated for disability services for their own children is spent, through the massive expansion of direct-funding models. Fortunately, this idea was already coming into vogue in the UK when we left, and the concept (if not yet quite the practice) has even penetrated as far as this faraway island.

If we get funding more directly - say some sort of voucher for a year's worth of "therapy", for instance - then we can vote with our feet, and those of us who want CE can pool our vouchers and fund it.

Of course, there has to be CE still around to fund, and conductors still available to pay salaries to...but I'm going to have to leave that to others to worry about at this stage.

After us?

As for Norman's incredibly powerful question "And When We Die, Who...?" - all us parents live with that haunting, haunted thought, every day of our lives. Who's going to love our profoundly vulnerable disabled children and care for them as well as we do after we die? Probably no one, I'm afraid. If we're "lucky", there are dutiful siblings, willing to sacrifice their lives in turn to take over our 24/7 care duties from us (remembering that in Australia, there is virtually nowhere for people with severe disabilities to go). If there aren't dutiful siblings - then, in Australia at least - I have no idea.

I'm genuinely surprised that there aren't more suicides of parents of children with disabilities here, taking their disabled children with them. Maybe we just don't hear about it? Anyway, another good reason for political activism.

References

Corrigan, S. (2009) The struggle for care, The Australian, 30 March. (2009) The struggle for care, The Australian, 30 March
http://www.theaustralian.news.com.au/story/0,25197,25262629-5012694,00.html

Perrin, N. (2009) And when we die, who....? Paces, 3 April

Sutton, A. (2009) The personal and the political: time for new thinking, Conductive World, 9 April
http://www.conductive-world.info/2009/04/personal-and-political.html

Sutton, A. (2009) No country for old carers: Australian testimonio of policy that failed, Conductive World, 30 March
http://www.conductive-world.info/2009/03/no-country-for-old-carers.html

Sue Corrigan

Australian. mother, for some years disability refugee in UK, carer, campaigner

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