...would you vote for me anyway...(sing along to the tune of 'If I were a Carpenter'), or would you scream like a banshee at everyone who stands still for long enough that the system is #$%&*, and tell me I need a kick up the proverbial. Sorry...venting.
I am presenting to the Productivity Commision on Disabled and Aged Care this Friday. I want to have a say in how this new National Disability Insurance Scheme operates.
I want to let off some steam about the millions of ways the system is failing us. I want some answers. I am furious.
We were steered to this outcome of DS having a unit of his own as we were told that this was the Governments 'preferred model'. We were actually negotiating an entirely different outcome of joining up with a well known service provider to build a complex of apartments for 10 people like DS with the aforementioned service provider being funded by the Government to provide care. Remember that our son is totally physically dependent. We were actively discouraged from this path, and pointed in the direction of finding our son a place of his own, whilst applying for a 'package' for his carer requirements.
Well, we're here.
And now, aren't we all dancing to a different tune. I've heard "there's no money" so many times I'll choke if anyone says it to me again. Here in South East Queensland, we have four bridges completed in the last 12 months...one only had 50 cars cross it on day one. Four bridges, not one. How much has that cost the Government. Four bridges completed in one year is more than I have seen built in the entire 50 years I have resided in Brisbane. It makes my head spin. We also have an underground tunnel that no-one uses and a desalination plant that has never been operated.
Now don't get me wrong. Governments need to spend on infrastructure. And the Arts. And Elite Sport. And on stupid ferris wheels that don't even get above the height of the skyscrapers nearby and on restoring City Hall. That's what civilised societies do.
BUT not at the expense of it's weakest and most vulnerable citizens. The frail aged, and the disabled.
Have I said all this already? If so, forgive me. I really just need a space to let off steam at the moment.
DH and I are worried out of our minds. We want to see our son live independently. We want that to happen now and not when one of both of us has left this earthly life. We want him to experience a normal life as much as he can. But if we have to fund it, we are looking at upwards of $100,000 per year, ongoing.
I am at an age, where the physical aspects of my sons care are simply getting (or are) beyond me.
Yet that is the best solution from the Governments point of view. It's the cheapest option. Of course they are not factoring in my own health problems, all caused exclusively by the heavy lifting and transferring necessitated in my sons' care. Those health problems all now require urgent treatment as well. So, no so cheap after all, eh?
We pay our taxes, it's not our fault or our son's fault that he was born with a disability, and yet we are stuck in some sort of endless Twilight Zone-ish loop where no-one will help us because the Government doesn't manage IT'S financial affairs.
Where is THEIR financial accountability? We only spend on luxuries after we've met the cost of our necessities. Surely caring for the most needy in society should be at the top of the list????
Off to have a weep now and compose myself.
They say you never cross a Mother...but I'm almost out of fight.
Someone send me your Maternal Fighting Vibes? I promise I'll give them back.