The true impact of caring for a profoundly disabled, non speaking, incontinent, intellectually disabled Autistic NDIS participant like my 12 year old…
Is ultimately a slow walking death,
In a world that tells you to die faster.
And the best bit?
Eventually that’s the only option you have.
I’ve lived without services. I’ve funded his nappies, regulation tools, sensory and speech devices. I’ve paid child support, I’ve been denied legal representation, and left to rot. People tell you that there’s help. That ‘help’ took my children from me because I was mentally broken by just trying to survive, and then rewrote my story to villainise me.
I’m not going to rehash my trauma and the abuse, or waste energy trying to get anyone to care. I did that for years, and all it’s done is make my situation worse.
But I am going to tell you this…
The proposed changes to the NDIS are going to increase demand in the assisted dying system, the domestic violence system, mental health services, the jail system and the housing system. We’re going to see more and more news stories of desperate families killing themselves and their children.
The government has decided that dead disabled adults and children are more cost effective than supported ones. Fact.
We will just keep pulling bodies out of the water, if we don’t go upstream asking why people have no choice but to drown.
But when the people and systems who should listen, choose not to hear? Fly past on their speed boats, stopping only for a press photo, and leaving us in its wake, flailing around just trying to breathe??
What happens to my child and the people like him, who can’t swim, (or speak) at all?
They DIE.
And you don’t care, cause it’s cheaper.
Could Mark Butler come look into my son’s beautiful blue eyes, and stab him through the heart? That would absolutely be the kinder alternative, than what is currently happening to my child, and the adults and children like him, as a direct result of this revolting denial of their rights and reality.
This is not an overhaul.
It is a genocide, with better marketing.
I know governments don’t care. I know to you, we are all just a number. A burden.
Can you imagine what it is like, to spend your entire life fighting just to be viewed as human? That’s my son’s reality.
I understand that people in power want facts and not feelings. However a system with no empathy cannot safely decide the fate of our country’s most vulnerable.
This government is committed to protecting fiscal responsibility, but is completely morally bankrupt.
I have nothing left to fight systems with. No capacity for legal language or explanations as to why my son deserves to live. He will require 1:1, 24/7 support just to exist, for his entire lifetime. Sorry.
I didn’t know I was growing a baby who would never be able to tell me he loves me, or point, or ask, or protect himself from predators, make a phone call, feed himself, use a toilet, hold a pencil, or have a friend who wasn’t paid to be there.
He currently receives less funding from NDIS than children who are able to attend mainstream school, while he is locked behind jail like fences at his special school.
How is that justified??
There is no safety, no services, and no support for kids like him. There is no place in our society for children or adults like him. Even in disabled communities.
He is officially the definition of the “too hard basket” personified, and these changes will take away the only chance he has to even try to leave the house.
You are taking away funding from the “too hard basket” kids, and justifying it by pushing their parents to suicide. I wish I was overdramatising. I am not.
13 years ago, when pregnant, and already a mother to a very sassy 3 year old, I dreamt of my kids becoming happy and healthy adults, having families and playing with my grandchildren.
My biggest life dream now? To not still be changing his nappies when I am 80, and to live long enough to bury him, before they bury me, and he’s left to fend for himself in a world that has no place for him.
Will I send this? Why bother. People don’t care about anything but themselves and money. Disability isn’t profitable. It is not pretty, it’s not shiny and it’s not a life you can possibly understand without living it.
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So please. Be the Change.Nobody wants to choose this life.Those living it, aren’t your enemies.They’re your siblings,your schoolmates,that bloke you knew who broke his neck kicking a footy.
And here’s the thing,there is fraud everywhere.The problem isn’t exclusive to our most vulnerable socioeconomic groups,and the answer to cost cutting and systematic overhaul,is not to make this clusterfuck of a system,even less accessible.
One car accident,
One diagnosis.
One genetic anomaly…..and this could be you.
Is that what you want?