Australians across the country take action to defend the NDIS

The National Day of Action is being coordinated by Every Australian Counts, a grassroots campaign led by people with disability, family members and service providers, that was involved in advocating for the introduction of the NDIS a decade ago.

Many events will be held today around the country and involve NDIS participants speaking with their local candidates for the Federal Election, from all sides of politics, to explain where the Scheme is failing and what needs to change.

Those involved in the National Day of Action will be wearing red t-shirts with the slogan ‘Defend our NDIS’ and holding morning teas, peaceful protests or community gatherings to talk about their solutions.

Lynne Foreman, a disability advocate, is organising the event in Geelong and while the NDIS is working for her currently, she knows it is important to speak up for the many people who have been experiencing plan cuts and those who can’t speak for themselves.

Ms Foreman has been involved with Every Australian Counts since the beginning and was one of the first people in Australia to receive an NDIS plan.

She says one of the reasons the cuts and plan changes are so damaging is the lack of explanation around why the decisions were made.

“I’ve had issues, I think we’ve all had issues under the NDIS, like for instance I have got a Specialised Disability Accommodation house but it’s taken me over three years to get one in the plan,” says Ms Foreman.

“I’ve finally got it in, so that’s not an issue now, but its all the time spent going back and forth, all the time to get all these things put in and [the planners] won’t tell you why they’d made their decisions.

“Sometimes when they cut something in your plan they don’t exactly say, ‘no I don’t think you’re eligible because of…’ that’s the issue too, they don’t explain why you’re not getting what you asked for.”

The constant change in staff at the National Disability Insurance Agency (NDIA) is also damaging for participants who need their planners to understand their circumstances, says Ms Foreman.

“Sometimes I wonder whether they really know anything about me, because my disability [Arthrogryposis multiplex congenita] is not a recognised disability – but there’s a lot of people like that, I’m not the only one. They don’t seem to do the background work,” she explains.

The message Ms Foreman wants to send through the Geelong event today, in which people will speak about their experiences and connect with local candidates, is that the NDIS needs to go “back to basics” and to the design it was supposed to fulfil.

“I knew we had to do this Day of Action to get the Government to understand,” says Ms Foreman.

“I think having this action collaboratively with everybody makes our voices heard more.”

NDIS is not listening to participants

Young Queensland-based entrepreneur Clay Lewis, 20, started his business cleaning wheelie bins at the beginning of 2018 and has recently expanded to offer outdoor cleaning services.

Clay is autistic and started his own business because none of the employers he applied to work for offered him a job interview.

He is now financially independent, pays taxes, is starting his superannuation fund and works every day for at least six hours, yet has trouble keeping up with demand for his services.

Having an income from his own business is important to Clay because it gives him the ability to self-fund activities and reach his goals.

“I went to Dubai for Schoolies because of my bin cleaning, I’ve done a lot of fun things in my life,” says Clay.

“It’s very important [to have my own business] because I need money, that’s the key.

“In the next couple of years I might think about moving out, it’s still a long way away, but I just need to keep stacking up the money.”

Despite wanting to grow his business so that he can work a full week, Clay does not have the funding in his NDIS plan to support his goal.

Clay’s mum, Laura Lewis, says the NDIA no longer listens to the goals of participants when deciding on the funding they can receive.

“Clay’s first year [on the NDIS] was while he was in high school and it was great. It worked for his circumstances because he didn’t need a great deal of Core support, the funding that was provided really matched his goals while he was in Year 12,” explains Ms Lewis.

“Once he left Year 12 he received his next plan, which was not that significantly increased, and I was quite downhearted about it because I was expecting it to match the goals of an 18 year old and I was expecting that I would be able to take quite a significant step back.

“I live with a chronic mental illness and the ongoing battle of filing the NDIS Change of Circumstances [form] over and over really impacts me too.

“There are definitely good stories out there, it’s really important to acknowledge where it works, but I don’t understand why it has to be so hard – the NDIS is not listening to what the goals of participants are.

“The goals of the participants have to be adequately funded.”

Ms Lewis says the efforts of advocates from Every Australian Counts is vital to making sure the NDIS works and that the campaign team should be acknowledged for the “non-stop hard core work” they have done over the past decade.

The National Day of Action is important to continue that work and to fix current issues in the NDIS, Ms Lewis adds.

“Let’s stand together and be proud of where we’ve come from and have a clear purpose for a way forward,” she says.

Voices of people with disability need to be heard

Every Australian Counts Campaign Manager, Jean Cotchin, says the National Day of Action is about bringing issues to the attention of political candidates who can change the system when they are elected.

“It’s an entire movement made up of hundreds of thousands of people where together we are stronger and it’s way past time that people with disability and the people that support us have some political power and have some influence over the systems that support us,” says Ms Cotchin.

“The National Day of Action is an opportunity to bring together everybody in our community as well as our allies and family members and colleagues to collectively make a lot of noise and make sure that the people that want our votes this Election hear from the people in their electorates and their local communities about what matters most to us all.”

The Every Australian Counts organisation has heard from many Australians with disability about how the plan cuts, the record number of cases going to the Administrative Appeals Tribunal due to disputes over funding, and the lack of implementation of recommendations or feedback, have affected their view of the system.

“At this particular moment in time people who need the NDIS are feeling really disappointed with the direction it has started to turn,” says Ms Cotchin.

“They want to make sure the people who are elected to represent them in the next Parliament are people who will defend their NDIS and who will listen to people with disability and treat us all with respect and transparency.

“We need to go back to the original intents, purposes, vision and principles behind the NDIS in the first place, which was to treat people…with respect and dignity but also to provide them with the individual supports and services they need to just get on with their lives and ideally have a good quality of life.”

The number of people involved in events today shows the passion and empowerment that people feel about these issues despite the huge NDIS-related challenges they have faced over recent years, as well as the stress of the COVID-19 pandemic, Ms Cotchin says.

“People just want to be genuinely listened to, they know what the problems are and they know what the solutions are,” she adds.

The National Day of Action will finish with Every Australian Counts’ Big Night In online event and Ms Cotchin has promised some big announcements will be made during the event.