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

Thursday, 8 March 2012

I have a young daughter, let's call her Charlie. She has CP and is a wheelie. She's had an electric wheelchair from a very young age so is used to having her mobility, and - of course - it's very, very important to her.
Now all you parents know as well as I do that these kiddos of ours keep growing. So well in advance, I gave my service provider's intake system a call in January 2011 to ask for an appointment to start looking at new wheelchairs. I pretty much knew which chair I wanted - just the next size up in the model we had, one of the few with front-wheel drive. All I needed was for an OT to do that thing they do with their measurements so I could get the whole process of applying for funding from Enable started.
Some five months later, having heard nothing back, I again rang the intake service to ask where we were at with my request. I was told that yes, my request was "in the system", and would be forwarded to the powers-that-be. But no, no one could give me any further information.
I was livid, and instantly fired off an email to the CEO of my service provider. I'm afraid I wasn't very polite. Knowing how long the bureaucratic system takes, I feared my daughter would get her P-plates before her new powerchair. I wrote: 
"I understand you cannot control Enable (such superhuman feat would possibly earn you a Nobel Prize from a number of mothers I know). But surely it is not too much to ask to be able to make an appointment with an OT to put a wheelchair application in for a five-year-old child within a six-month timeframe!? Im not even asking for therapy sessions, just one meeting to get the process going. What am I to do when she outgrows her chair in a few months time? Take away her mobility? Or come and clean your offices to earn enough money to buy one myself?"
About an hour later, I received a phone call from the CEO. He agreed that the situation was unacceptable and said I would get a phone call from my OT on Monday morning. As indeed I did - and two days later my daughter's legs had been measured! The process was finally underway, and a trial for the new chair was booked.
Lesson one: don't put up with unreasonable waiting times. Remember the squeaky wheel. Create a fuss. Things might just happen.
Then something unexpected occurred. 
One day, flicking through my local newspaper, I saw a story about a boy who had been given a standing wheelchair by the Variety Club. And I went: "Wow, now that would be something!"
That evening I turned my computer on and found these amazing machines - electric wheelchairs that take a person to a full standing, weight-bearing position with one push of the controls.
I don't need to explain the importance of standing to you. Nor the daily difficulty in achieving it. The bending, the lifting, the strapping, finding the time in between all the other chores in a day. And schools often won't even contemplate putting kids in their standing or walking frames "because Occupational Health and Safety won't allow it."
So, wiith even the possibility of avoiding hip dislocation or scoliosis being priceless, I felt I owed it to my child to investigate a standing chair.
I contacted my OT with the information I'd found online about two chairs I thought would be suitable for my little girl. I asked her to imagine for a moment that money was not an issue could she just tell me if my daughter would therapeutically benefit from a chair like that?
Her response was practical, giving me some pros and cons of such a chair for someone like my daughter. She explained that she had no knowledge of a suitable support seating system that works in both sitting and standing position. Fair enough. Then she added: "But there may well be something suitable out there nowadays". She wouldnt know about it, though, because:
I suppose I have () stopped looking at them as [the NSW government] won't fund them.
This comment hit me square in the chest and left me breathless.

And made me wonder.
What other equipment is out there for our children that we dont even know about? What else is there they could benefit from, but that even our childrens therapists dont know about? Aren't therapists meant to stay abreast of all new developments in their field?
I am left with the sour feeling that our children don't get what they deserve....

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