What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Thursday, 26 February 2015


I received a letter today which left me (momentarily) speechless - and then livid!

Here it is.

In June 2014, our service provider put in a request for a new manual wheelchair for BooBoo with EnableNSW. This is kinda important, as a manual wheelchair is her main means of getting around. In the past we have bought her chairs ourselves because, well, dealing with EnableNSW is not my favourite pastime. And we've had the means, so I don't want to take funding away for those who need it more.

As things stand with hubby's business, we cant currently fund another wheelchair. We have spent lots of money on home modifications and equipment (4 wheelchairs, 3 walking frames and one standing frame - and those are just the big items) and we haven't really got an income at the moment. So while there is no doubt BooBoo needs a new chair, I have no option but to request it through EnableNSW.

The chair she currently has was not the best fit from day one. Let's just say her needs and abilities were not interpreted adequately by the service provider (whose expertise lies with clients with quite different needs, but the disability system being what it is, this is our designated service provider).

We adapted the chair where we could. We did some creative re-modelling to make it work. But it meant the chair reached its maximum growth capacity within a year of its arrival, and I knew a new one was needed soon - despite BooBoo's thankfully relatively slow growth.

I knew it would take time, so the OT and I prepared the application in good time. I was also assured that this was a priority two item for her (being her main mobility) and should come relatively quickly. It was approved without too much difficulty Now funds have to be released to the supplier to commence making the chair.

In January, BooBoo started complaining about a sore back. Every day.

We are lucky a kind Paralympian (you know who you are Rosemary) made some further changes that have alleviated the back ache somewhat.  

Our new OT requested EnableNSW to please speed up funding for the chair due to BooBooo's daily back pain. I was told they have two weeks to respond to this request.

And at the end of those two weeks, today, I received this letter.

It tells me nothing whatsoever about wether her chair will be funded sooner and if so, when. 

Instead it insults me telling me I need to have patience because others have equally pressing needs. As if I don't effing know that?!?? The letter even implies that my impatience is unfair towards people waiting for a ventilator. As if I ever would dare to suggest a ventilator would not be more urgent than a wheelchair. In fact, as a priority one item, surely EnableNSW isn't seriously suggesting people have to WAIT for a ventilator do they?!

I was seriously incensed by the letter and rang them straight away to complain about the tone of it. I have since followed up with a written response which requests and actual answer as to when I can expect the chair to be funded and twister my disgust with the tone of the letter.

Because really, I enjoy nothing more than battling bureaucracy (and getting insulted in the process). Sigh.

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