The Hon Jason Clare MP
Member for Blaxland
Speech: 12 Feb 2018
Tonight I want to talk about a beautiful little girl who lives in my electorate named Georgia.
Georgia is 9 and she has multiple disabilities. She has autism, epilepsy and profound global development delay.
Georgia can’t dress herself, or brush her teeth or comb her hair. She can’t shower on her own.
She has to wear a nappy 24 hours a day.
She has to wear a onesie - otherwise she will put her hands in her nappy and smear faeces around the house.
Georgia can’t speak. That often means she gets incredibly distressed and can be inconsolable for hours.
Georgia is the sort of little girl that the National Disability Insurance Scheme – that we set up here – was designed to help.
She’s been supported now by the NDIS for a bit over a year.
Last year she achieved a major goal. She can now feed herself.
The NDIS provided funding for a support person who came in a couple of times a week and helped Georgia to do this.
It requires repetition, consistency and reinforcement. And it’s worked. It’s working. It’s the NDIS in action.
This year Georgia’s mum has two more goals for Georgia – first, to be able to go to the toilet on her own, and second to be able to communicate.
The NDIS asked Georgia’s mum to get evidence of what Georgia needs to achieve these goals.
And she’s done that. She got these two reports. A report from a Speech Therapist and a report from an Occupational Therapist.
What these reports say is that:
- to communicate Georgia needs an assistive technology device and a weekly session with a speech pathologist to learn how to use the device and to learn new words.
- to go to the toilet on her own Georgia needs a program similar to the one that helped her to learn to eat - a support person to come in for two hours a day, three days a week.
Those reports were given to the NDIS late last year.
Two weeks ago Georgia’s mum met with the NDIS team in Bankstown and went through these reports.
That night she went home and she clicked on the NDIS website to see if Georgia’s plan had been updated.
And it had. But the funding hadn’t been increased. In fact it had been cut – by 70 percent.
A 70 per cent cut.
It is extraordinary.
The way the NDIS have structured it there is money in the plan to buy the communication device - but not to teach Georgia how to use it.
There is funding in the plan for nappies, but not enough to get a support person to teach Georgia how to go to the toilet.
It’s short sighted stupidity.
Just in financial terms alone it doesn’t make sense - a bigger investment now, will mean that Georgia will need less support in the years to come.
I ask you to just imagine for a second what Georgia’s mum is going through at the moment.
Georgia’s mum is a super woman.
She’s a single mum. She’s raising two kids on her own - one with a significant and permanent disability. And she also holds down a job, she works four days week.
She is the sort of person that we should be doing our very best to help, and decisions like this are only making her life and her family’s life even harder.
But what makes this worse - and what makes it more worrying for me - is it’s not a one off case.
It seems to be happening a lot, particularly at the Bankstown NDIS office.
Last year I raised a similar case – the case of Michael, a 14 year old boy from Bankstown.
He’s got severe global delay and autism as well as cerebral palsy.
He had to have a hip operation last year and now he needs a standing frame to teach him to walk again.
And the NDIS are refusing to provide it because they say he can only use the standing frame for half an hour a day.
His parents disagree. They say he can use it for an hour.
Last year I asked the former Minister for Social Services for an independent review, and I am glad to say that is now happening.
What I’m asking for tonight is the same thing for Georgia.
I ask new Minister please intervene here - reverse the cut and order an independent review to make sure that she gets the funding and the resources that she needs to do the things that her mum and her therapists hope for her.
To be able to go to the toilet on her own.
To be able to communicate.
To be able to tell her mum what she wants to eat, or drink.
To maybe even one day tell her that she loves her.
It’s not a one off case.
I have got others and I will keep raising them here until we get this right.
Until these precious kids and their parents get the help that we intended - and that they deserve.
The NDIS is such a great initiative. Full of so much promise.
But it’s got to deliver for people like Georgia and her mum.