A few weeks ago we were driving back from school and Boo was in a full on take flight flap-a-thon.
It had been a hard and trying day full of changes to his routine and he had slept little the night before.
As he flapped and jumped about in the seat next to me, all 6 foot 4 of him shaking the car about, I had a shocking thought.
He has to die first.
If I die first there will be no one to care for him and no where for him to go.
Yes, he could potentially go and live with his sisters but as much as they would love him, he is not their responsibility.
It is an awful thing to have to plan, sometimes years, in advance purely because you are terrified that the supports won’t be there for him.
We are still on the ‘waiting list’ for early intervention for fucks sake. The kid is almost 16.
I put him on the waiting list for supported ADULT accommodation when he was FIVE because I was told the waiting list is THIRTY YEARS.
I do not resent being a carer. I will not palm off my child.
He is my life and I work around him and his needs and will do anything to ensure he is happy and safe.
But what when I am dead?
Reading all the stories about the NDIS being ‘delayed’ or ‘watered down’ worries me.
We NEED a National Disability Insurance Scheme to ensure that people like my awesome Boo get the help and support that they need long after I am dead.
And so that carers don’t have to worry about it.
I am sure that would bring down our blood pressure a tad. Maybe tacking a few more years on our lives.
For more information on how you can let the government know that the NDIS needs to be a priority (more than $12 billion dollars on stealth fighter jets) visit Every Australian Counts.
You can write to your local paper: info and tips here
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Or bother your Local Member (giggles): here