Disability News

Inequity, autism spectrum disorder and the cost of NDIS cuts

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Navigating support services can be a maze for parents of children ASD, but the NDIS provides practical and positive support (screenshot via YouTube).

We have two options, says Jane Salmon. Raise the Medicare levy for NDIS and support autism, or destroy human rights and breed more austerity.

YES, TONY ABBOTT, even deep dark depression is treatable with positive supports, exercise, counselling and medication.

But leave it under-treated for too long and it can debilitate for life.

The National Disability Insurance Scheme (NDIS), combined with Medicare, can provide those essential supports and structures. Austerity breeds depression. The Margaret River family shooting proves that those beyond the reach of timely NDIS support flounder. 

The current upswing in employment is largely due to the increase in casual workers flooding into the disability sector. Many of the jobs are not full-time or permanent, but they are there.

It was political foresight that established this dynamic opportunity even as other industries faced crushing cuts. NDIS providers like HireUp have offered flexibility and the difference is showing.

More people with disabilities are accessing the wider community. More people are acquiring life skills. More folk have made new friends.

As a mum of two boys with high functioning autism spectrum disorder, born in 2000 and 2003, I fast became an isolated, worried wreck. No DNA testing was available and diagnosis took years. No help was on offer. I was unable to sleep much, let alone work. Identifying therapists, taking my sons to specialists and worrying about money became my whole life. 

Wrangling those two was like juggling a bag of monkeys. On our way to preschool, the supermarket or specialists, members of the public would comment on how disruptive they were. The first thing folk do is blame the mother.

Early intervention cost over $30,000 a year per child. I could have boarded them at The King's School for that! Or bought a car. What about a hapless parents’ human rights?

Relationships withered. I became so stressed and busy addressing the maze of autism therapies that I overlooked signs of crisis in my wider family. Horror followed — horror I may have helped prevent, had my life been working. Many people were affected.

In this maelstrom, I overlooked the development of an advanced 3B cancer in my breast. It had metastasised before I noticed the lump. The result? Really expensive comprehensive cancer treatment while trying to raise kids with autism. The damage of living under that sword of Damocles after five surgeries, chemotherapy and radiotherapy is extraordinary. This, in turn, has led to cognitive damage and fatigue. It was three years after chemo before I could read a line of text on my first attempt. Cancer treatment alone cost around $700,000 in real terms. 

So it stands to reason that cutting NDIS for high functioning autism is a false economy.

Distressed single parents that have cancer and kids with autism are people who can’t contribute very much to society. But the NDIS provided a safety net — a positive network and a united nation of interesting, talented carers has really enlarged our lives and our skills.

Yes, I know there are people with far more severe needs in the disability sector. Thank goodness the NDIS is beginning to work for them. They need and deserve every bit of it. But there is no need to pit “us” against “them”.

The privatised model of NDIS is very rigid and costly to taxpayers. But it does eventually deliver. My second son is scraping through the bottom of mainstream education and finally able to write a sentence. It is almost legible. He might even make it into the workforce.

I don’t want to raise angry monsters in basements that are a threat to society. The needs of these kids are being closely monitored as a condition of NDIS eligibility. It’s a rugged qualification process and not very transparent. 

Funds saved from NDIS go straight into tutoring because there is no Gonski for disability funding. 

Again, the inequity of this stinks.

But we’re getting results. I want my kids to learn to thrive in the time I have with them. High functioning autism is both a challenge and an opportunity. As a society, we have the opportunity to raise savants brilliant at coding and astrophysics... or angry, alienated gamers. 

It’s your pick. 

Raise the Medicare levy to cover NDIS, remove any feather bedding by service providers and improve the transparency of the system.

Keep NDIS for depression and high functioning autism to gain as a nation. Benefit from the upswings in work via the service providers funded by NDIS. Create new positive social networks. 

Alternatively, our Government can raise austerity, destroy human rights for the disabled, run down options and end up with extra people on the streets, or in gaol, at a cost of hundreds of thousands per year.

You can follow Jane Salmon on Twitter @jsalmonupstream.

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