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

Wednesday, 14 March 2012

A Very Puzzling Little Mystery

A day or so ago, the facebook page of the Cerebral Palsy Alliance made one of numerous pitches for donations to the CPA by recounting the following story:
"Jacob has cerebral palsy, and earlier this year he was just one of hundreds of littlies to start their first day at kindergarten.
But unlike most kids his age, Jacob who uses a walker and is hearing impaired, has had to undergo years of intensive therapy to ensure he was physically and emotionally ready for school.
Thanks to our generous supporters, Jacob received at Cerebral Palsy Alliance the therapy he needed to start at mainstream school with his siblings and peers.
There are many ways you can support kids like Jacob - to find out how, visit ways to donate"

"Years of intensive therapy"... from the CPA? Hard to know what the answer to that question is, because when you analyse it this little story is actually very carefully worded - but certainly, that is the very clear and deliberate implication.
Perhaps Jacob attended the CPA's Conductive Education program?; except this little story doesn't actually state that, if so - it simply refers to intensive "therapy".  
Yet who receives years of intensive "therapy" input these days, from the CPA or any other disability service provider in NSW? Sure, parents are purportedly "trained" by therapists to carry out therapy-oriented work in their own homes, by themselves, and that could well amount to "years of intensive therapy" - but this little story explicitly states that "Jacob received at the Cerebral Palsy Alliance the therapy he needed".
All very puzzling really, given the fact that so many parents of young children - not to mention older children - are constantly tearing their hair out at the lack of even the most basic therapy service, such as an OT to measure up a child for a wheelchair, as demanded by the equipment funding body Enble, in anything under 18 months.
So, in an effort to get to the bottom of this mystery, the CP Clients& Family Forum posted the following on the CPA fb page:

The CP Clients& Family Forum would like to hear from families of children with CP as to their experiences in seeking to access "intensive therapy" from CP service providers such as the CP Alliance. We would like to hear about such things as:
1. How long did you have to wait for a therapy appointment after diagnosis?
How much therapy did you/your child receive in the pre-school years?
3. What sort of therapy did you have access to?
4. Do you consider your child received access to sufficient therapy?
5. What sort/how much therapy did your child have access to after starting school?
Please email responses to cpcfforum@gmail.com Thank you for your assistance.
And guess what - this post sat there for a couple of hours until someone at the CPA noticed it, deleted it, and blocked any further access for the Forum to the CPA fb page.
Now, seems to us here at the Forum that if the CPA was actually providing the "years of intensive therapy" that children like Jacob need, they'd be happy to promote a survey like this - wouldn't you say???


  1. My comment to this post on the fb page:

    Good work Jacob, you're a top bloke! And a lucky one, to have had "years of intensive therapy". I hope one day all kids will be as lucky, and can follow in your inspiring footsteps. You rock Jacob!

    1. Just discovered one missing piece of this puzzle: Jacob did indeed get years of intensive Conductive Education (NOT "therapy", note)throuh the CP Alliance's Conductive Ed program. Very strange though how the CPA never mention the dread words "Conductive Education" in any of their fund-raising appeals or PR material - just keep claiming the credit for CE's achievements by referring vaguely to "therapy". Wonder why that would be?