A networking and information-sharing site for people who access cerebral palsy services and supports in NSW

Wednesday 7 March 2012

Following is a fund-raising message published on the Cerebral Palsy Alliance website, which strikes me as raising a number of interesting questions that I will spell out after reproducing the message in question.
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A Message from CEO, Rob White
Every Hour Counts
As you read this message, 490 NSW children are currently waiting for urgent therapy for cerebral palsy.
It really worries me that these children have to wait - all for want of funds to employ extra therapists.
The research makes it very clear that the more learning and development a child - especially one with cerebral palsy - does while they are very young, the more difference it makes. That's why these early years are so important.
Luckily, Francesca didn't have to wait more than a couple of months to start her therapy after being diagnosed at 19 months.
Although every child is different, Francesca is now 5 and ready to go to 'big school' next year with the help of an aide.
That's a huge achievement and it would never have happened without enormous commitment from her family, hundreds of hours of therapy from her Cerebral Palsy Alliance therapist, Elaine, and a giant dose of sheer determination from Francesca herself.
Francesca's mother Angelina is both delighted and amazed at her daughter's wonderful progress.
Angelina firmly believes that without the therapy, Francesca would not be the bright, energetic young girl she is today.
Our fear was that Francesca would be bound to a wheelchair, unable to do things for herself or interact with her friends, but the constant play has really stimulated her mind and her body.’ Angelina, Francesca's mother
Therapy Changes Lives
Before she started therapy, Francesca's fists were clenched into tight little bunches that made it incredibly difficult for her to grasp anything.
But numerous sessions of play therapy reaching for balls and other toys has dramatically increased Francesca's ability to open her hands from their clenched state.
This would never have happened without the therapy.
Overcoming the brain injury that causes this kind of clenching requires repeated and determined efforts. In Francesca's case, every time she reached out, determined to get that ball or toy, she took 1 step closer to restoring the use of her hand. Now she can open her hands readily - especially if there are toys involved!
Before therapy, Francesca had very little body strength and could sit for only a moment or 2. Her mum described her as "floppy". Now, at 5, Francesca has learned to sit up by propping herself up with her hand.
I wish you could see her zooming around in her wheelchair or stubbornly persisting with mastering her walker. Really, it's inspiring.
The Difference You Can Make
Francesca is a living, walking and talking example of how much difference intensive therapy in the early years can do for a child with cerebral palsy. No child with cerebral palsy should have to go without it.
It costs around $32 for 1 session of therapy. $384 is enough to help a therapist train a young child to use a high-tech speech device, so they can communicate with their family, teachers and friends.
A whole year of complete therapy for another child like Francesca costs around $3456.
Whatever gift you can give now to help get our youngest children with cerebral palsy off our waiting list and into therapy is going to make an enormous difference to them not just now, but for their whole lives. Please donate online now.
Thank you.
Rob White
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Firstly, as a long-term supporter of Conductive Education, it is most gratifying to see a medical-model, therapy-orientated service provider now using a key educational-model word like "learn", as in: The research makes it very clear that the more learning and development a child - especially one with cerebral palsy - does while they are very young, the more difference it makes. That's why these early years are so important.
It's also gratifying to read that "the research" now apparently "makes very clear" what CE advocates in western countries like Australia have been saying since the 1960s i.e that "learning"opportunities are vital for children with CP, and that the more "learning" opportunities a child accesses, the more "difference it will make".
Umm - yes, that's quite right, Rob.
Clearly, the CPA and other therapy-based service providers have come along a loooong way since the 1980s and 90s, when the active, learning-based educational methods of CE practitioners, as opposed to passive therapy methods, were so scathingly derided.... reading this message indeed, it almost sounds as though therapists are beginning to think of themselves as - well - highly specialised teachers!  And what's more, it's clear from Rob White's message that they are even enthusiastically embracing longterm CE precepts, such as the developmental benefits of "constant play" as alluded to by Francesca's mother.
At this breathtakingly speedy rate of dawning enlightment, it will probably only take another 30 years or so before conventional, medical-model therapists even start even using the word "Education" somewhere in the title of the method they offer to describe what they do, instead of "Therapy"....
But one thing's for sure: none of these "experts" are ever going to openly acknowledge that the old medical-model, therapy-based methods were on the wrong track, and that CE was on the right track all along. No, they'll just quietly nick all CE's precepts and then claim it was their idea right from the start.
Why so cynical? Well, for a start, you might have noticed in this appeal for funding for more therapists, there is not ONE WORD of any mention of the fact that the CPA also offers a CE program for children and teenagers, and that this program could do with some extra funding and expansion too (something however Rob White doesn't seem in the least worried about, despite extensive unmet demand for CE).
$384 to "help a therapist train a young child to use a high-tech speech device so they can communicate with family and friends"  ? - well, how about a similar amount going to the CPA's two Conductive Education specialists to so they can actually work on teaching a child to speak, as CE taught my own son to do (despite medical advice that he'd never be able to)?

Secondly, it is gratifying to see the CPA start to publicly reveal information about its waiting lists, something it has long refused to do, stating that it has 490 children on its books currently waiting for "urgent therapy".... (not to mention the adults of course, but let's not go there.)
However, it is really quite astonishing that Rob White would or could make a statement like: "Luckily, Francesca didn't have to wait more than a couple of months to start her therapy after being diagnosed at 19 months."
Luckily? - when supposedly "every hour counts", as indeed it most certainly does? When "the research" now shows there is a golden window of opportunity for brain repair in children under the age of 24 months, Rob White thinks a child of 19 months waiting another two months after diagnosis to begin therapy is "lucky"?
God knows what he'd define as "unlucky". I know what my definition is though - the generations of young Australians with cerebral palsy denied any access to the intensive, learning-based early intervention methods CE has been offering for the past 60 or so years now and known in the west since the 1960s, solely because of the power of vested interests in the traditional, medical-model therapy system.

Sue O'Reilly


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