I’m mad.  No, I’m furious.  Our Government promised to help the disabled.  Anything you need, they said.  This was the point of the National Disability Insurance Scheme.

Silly me.  I believed them.  I should’ve known better.  I dealt with the Government in my job prior to my stroke.  I know what they’re like.

Where I live – north-west Sydney – the NDIS was meant to start in June.  June.  I still wait.

Prior to this promise, I knew I needed more than the Government could provide so I took money from my superannuation (which means I’ll have less to retire on).  There is a “loophole” in our tax system for the totally permanently disabled.  We can access our superannuation before 65, but it isn’t really a loophole because we are taxed on any amount we touch.  Okay, I’m disabled and I can’t ever work again but, sure, still tax me.  I accept that.

So, with our money, I managed for 6 months to do 2 hours of physio at a place called Walk On, 2-3 hours of hydro and 1-2 hours of physio (the latter is thru a public hospital, so I don’t pay).

The point is: with this amount of activity, I could stand using my Sara Steady when I got out of bed each day.  It took a few tries but I managed on my own.

Our money ran dry in May but I figured a month with minimal activity – I could handle that – and, besides, the NDIS started in June.  I’d be better off.

While I waited my muscles started to waste away.  I do not claim to be a doctor but I feel it.  Now, it doesn’t matter how many times I try, I can’t stand in the morning without help.  I can’t begin to express my frustration.  All I can do is scream and cry.  My carers think something is wrong – I’m just mad beyond reason.  I snap for a moment.  My lack of activity tells the story.

I can’t wait for the Government to get their act into gear and to see if they come good on their promises.  The Government needs to not promise things until they are organised to go forward – people’s lives matter.  I will put my fundraising money (thank you to everyone able to help) together with my own – I will deplete my superannuation more.  I will pay more tax.   So much for paying taxes 26 years.  What a waste.

One thought on “NDIS

  1. I must confess I considered the NDIS with a great deal of cynicism when it was first announced. Then again I treat everything that comes from Our Fearless Leaders in Canberra with a great deal of cynicism and I’m rarely caught by surprise. The frustration must be overwhelming sometimes, but fortune favours the brave and you are nothing if not the epitome of courage and determination, Rachel. I have every confidence you will find a way to prevail despite your challenges.


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