The NDIS has transformed my life – and the last thing we need is media hysteria about its cost | Elly Desmarchelier

The national conversation on the NDIS has been dominated by able-bodied commentators declaring the scheme’s cost ‘a blowout’

Nine years ago, the former prime minister Julia Gillard introduced a Medicare levy to pay for the creation of a National Disability Insurance Scheme (NDIS) into the House of Representatives with an at times emotional speech. On the cost of the scheme and a new levy to pay for it, she was clear: ‘‘This is a united embrace of national responsibility and a great act of mutual care and solidarity.’’

We seem to have lost our heart and any sense of “mutual care”, or at least that’s what you’d come away thinking if all you’d heard about the scheme was the past few weeks of media commentary.

Post budget, the national conversation on the NDIS has been dominated by able-bodied commentators declaring the scheme’s cost “a blowout”, “spiralling” and “unsustainable”.

The media hysteria at the average 14% a year increase in the cost of the scheme over the next 10 years often ignores the review currently under way into the NDIS, and it usually fails to acknowledge that the NDIS is also affected by the same upward cost pressures as every other part of the economy – inflation, supply issues, worker shortages and increasing housing and energy prices.

The political media commentariat appears to believe the NDIS is completely immune to these international economic trends and the “cost blowout” is simply the result of government being too generous, spending too much, on too many disabled people.

But that’s exactly what’s being lost in this debate. People. After the budget, we’ve heard a lot about cost, not a lot about people. People are at the heart of the NDIS. And the heart and foundations of the scheme are strong.

The NDIS is doing what it was designed to do. It is giving the 500,000 people with disability on the scheme the opportunity to live a life of our choosing with access to the supports we need to do the basics – shower, leave our homes, participate in community, and access the medical support we need.

Yes, we should review the NDIS, and yes, we can make it better – particularly for already marginalised groups such as First Nations peoples and culturally and linguistically diverse communities. But the existence of the scheme itself and its core principles are not up for grabs.

On a personal level, the NDIS has transformed my life. You only have look at three areas of my life.

In the three years before I had the NDIS, I was admitted to the intensive care unit (ICU) more than half a dozen times for things as common and preventative as a UTI. In the three years since being approved for the NDIS, I have not had a single ICU admission and that’s because I have access to the allied health I need to keep me from getting so sick I need a breathing tube to live.

Before the NDIS, I spent my days sitting in a wheelchair bought from the “special buys” section at Aldi – it didn’t fit me and I couldn’t push myself around, which meant I couldn’t work. Now thanks to the NDIS, I move myself around independently in a wheelchair that fits me, and I’m able to work and advocate for my community.

Before the NDIS, I could not envisage a future where I wasn’t reliant on my partner and parents to live – I needed their help for basic things such as showers and preparing meals. Now, with the NDIS, I have a team of people who I employ, and my partner and parents can go back to being my family, instead of carers.

My story is not unique. People with disabilities, their friends, families and supporters campaigned for decades to deliver the NDIS. It continues to exist because thousands of people worked together to advocate and fight for this scheme during the most recent federal election. This is our scheme and, while it is imperfect, we believe in its original promise.

Spending on the NDIS is delivering outcomes that are not only revolutionising our lives, but also our economy. It’s been estimated that the NDIS has created more than 270,000 jobs, and for every $1 spent on the NDIS there is a $2.25 return to local communities. But of course these numbers fail to feature in many analyses of NDIS costs.

So let’s keep this debate simple. Just like Gillard promised nine years ago, we’re not turning back. People with disability aren’t turning back. I’m not turning back - back to staking out the special buys section. Back to a time before the NDIS.

If you look beyond the media talk and to the people – every day Australians – I still believe that the scheme “has found a place in our nation’s heart” and it’s there to stay.

• Elly Desmarchelier is a disability rights activist

Elly Desmarchelier

The GuardianTramp

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