National Disability Insurance Scheme

One of the most powerful ways to initiate change is to listen to someone else’s story. Knowing that you are being listened to can change your life. Governments that do not listen to the people are unlikely to be re-elected.They show they are keen to listen when they set up surveys, polls, committees and inquiries to gather opinion and evidence to feed into policy reform.

We are at an extraordinary time of change in the disability sector in Australia.

– Professor Bruce Bonyhady, disability advocate, 2018

The National Disability Insurance Scheme (NDIS) was introduced under the Gillard Labor government in 2013. It came two years after the Productivity Commission has published a report recommending the establishment of a national scheme to provide long-term care and support for people with disability. The model for the NDIS was informed by consultation with the disability community and disability advocacy organisations.

The scheme provides tailored individual support to Australians with disability to improve their wellbeing. It puts choice and control in the hands of people with disability by allowing them to choose their own goals and support networks.

An independent review to ensure the future sustainability of the scheme was announced in October 2022.

Group of protestors standing on the road holding 'Defend our NDIS' signs.

The Hon Bill Shorten MP and members of the disability community rally to 'Defend our NDIS', the day before the federal election, Melbourne 2022. Courtesy Cassidy Cloupet.

Sophie Deane leaning her head against Julia Gillard.

Melbourne girl Sophie Deane met former Prime Minister Julia Gillard at a press conference about funding for the NDIS, Melbourne, 2013. Getty Images. Photographer Robert Cianflone.

'Smoothing the pathway': Elly Desmarchelier

Transcript

I'm Elly Desmarchelier. I'm a proud disabled woman and I am also a disability rights campaigner, and that means that I advocate on behalf of the one in five Australians who live with a disability.

I've lived mostly in the inner south of Brisbane, so yeah, proud Brisbane girl. My mum was a high school speech and drama teacher, but I remember very clearly I was about 10 years old when I got home one day and my mum sat me down and she said, 'I've had a long chat with your dad, and we've made a decision, but it'll mean a lot of sacrifices from everyone. I want to go back to university and become a lawyer.' And I said, 'mum, of course. Girls can do anything. Go ahead.'

I'm very different from my parents, but I think that decision by my mum is very in keeping with decisions I make, which is: hard things are hard.

The NDIS is a social and economic reform on the scale of Medicare. It has changed the Australian economy, and it has changed the lives of the 500,000 Australians with disability it supports in transformational ways. I was a national spokesperson for the Defend Our NDIS campaign. We had some really clear goals. We wanted to make sure the NDIS was on the election agenda, and we wanted to make sure that people with disability felt like they had an avenue to get involved in the election. One in five Australians have a disability, and yet were kind of ignored by the political parties as a serious voting demographic. I wanted us to be taken seriously.

There was a avalanche of stories of people's plans being cut and not small cuts. We're talking 50, 60, 70% of their funding cut. That means they're not able to go out into the community. They're not able to shower. They're not able to eat. Really basic things.

I was speaking to the campaign director and we were talking about how hard it is finding stories and if we're going to get any attention on this launch on budget day. And he was like, 'People are just too scared to come forward.' And I think it's the single most important and the most terrifying piece of activism I've ever done, which is I shared my own NDIS cut story. And I went, they did cut my plan. They only gave me six months of catheter bags for a 12 month plan and he went, 'Catheter bags? That's the story.'

I reached out to the project who I have worked with before, that story aired, and I had a response I had never received. It was overwhelming. And the next day, we launched the campaign outside Parliament House.

I was just about to meet with Anthony Albanese and Bill Shorten. I was told I had 10 minutes before they arrived, and I was being a bit cheeky with my support worker and spotted the Julia Gillard portrait. Mr. Albanese walked straight up to me and he said, 'I saw The Project. I'm so sorry for what happened to you. We're going to get the scheme back on track.

After that day at Parliament House, I woke up and there sat a 'Hello from Julia Gillard' email.

'Thank you for your very kind words. I wish you the best of health and every success in your advocacy work for and on behalf of every Australian relying on the NDIS for a better quality of life. You are an inspiration. Kind regards, Julia.'

Nick: Special, hey?

Elly Desmarchelier: Yeah.

Julia Gillard was the prime minister when the NDIS passed Parliament and became law. In that photo, she saw a young redhead woman who was feisty and determined and was there to protect something that she also felt very protective over. It makes me feel like I want to make her proud. People with disability for decades have been told they have absolutely no power. So why would they think they could change things? So as a disability rights campaigner, one of the main jobs I have is to remind people with disability that their voice, their vote, their campaign, their issues are just as important as those of people Without disability, I can't have them fighting the same battles that I'm fighting.

So those are the people that drive me, is the little Ellys that are there now and the next generation of little Ellys, and I just don't want them to have to go through the same experiences.

You've just got to make the path smoother for those coming behind you.

Elly Desmarchelier is a proud disabled, queer woman and national disability rights campaigner. Most recently, she was the National Spokesperson for the ‘Defend Our NDIS’ campaign. ‘Defend Our NDIS’ brought together thousands of people with disability, their families, disability support workers and community supporters to ensure the NDIS was high on the election agenda.

Her advocacy sees Elly meet with the country’s leaders, engage with national media, host town hall meetings and, most importantly, meet with thousands of people with disability who have shared their stories with her.

Elly is determined to create meaningful change for the one in five Australians with disability. She believes that is only possible if people with disability have a seat at the table where decisions likely to have a profound impact on their lives are being made.

My job, as a disability rights campaigner, is to make sure that people with disability understand that they have the power to create social change. Everyone has the power to smooth the pathway for those who come after them.

– Elly Desmarchelier, 2022

This story is featured in National Archives's exhibition Disrupt, persist, invent: Australians in an ever-changing world.

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