AS I WALKED into my new GP’s office at the end of 2020, I felt cautiously optimistic. I was there to discuss my application for the National Disability Insurance Scheme (NDIS). Being on the scheme – particularly getting a wheelchair – would be life-changing. 

But I had literally written the handbook on the application process for young people, so I knew it wouldn’t be easy.   

I handed my GP the application form. She flicked through it without asking me any questions, scribbled a few sentences and handed it back to me. ‘There.’ 

I scanned her additions, my frown deepening with every word I read. ‘You’ve said I need support with showering, but I don’t.’ 

‘They’ll give you money if I write that.’ 

‘That’s not how it—’ 

She didn’t let me finish. ‘Was there anything else?’ 

‘No, but—’ 

‘Have a good afternoon.’ I was dismissed, and too shocked to say or do anything other than leave without protest.  

The application was rejected, which was unsurprising but still disappointing. Eventually, my third application was accepted – but, as it turned out, getting onto the scheme was the easy part. 

She should have listened to me. 

AS YOU CAN probably tell, the NDIS is far from perfect. A recent independent review found that it needs a significant overhaul, which the government has delivered in the form of a bill called Getting the NDIS Back on Track. Though based on recommendations from the independent review, the implications of the bill remain unclear apart from its potential to save $14.4 billion. 

This emphasis on economics erases the very reason the NDIS exists: disabled people. We are more than budget estimates or figures on a spreadsheet. The value of our lives should not and cannot be reduced a monetary figure. 

Over the past few months, more details about the amendment bill have emerged, and not all of them are cause for concern. For instance, the taskforce to address the ‘NDIS tax’, as it’s colloquially known, has the potential to reduce spending on the scheme by preventing service providers from overcharging, or ‘price gouging’.  

However, rather than focusing on what participants have to say about their lived experience and using this information to shape legislative change, the system instead puts the onus on them to navigate a confusing system that hasn’t been designed with their input – and then blames them when the system fails.  

Lived experience has been omitted from conversations about disability supports for far too long – and the consequences are clear.  

They should have listened to us. 

LIKE MY GP, many professionals who ostensibly support us have little understanding of disability and demonstrate little empathy for its impact on our lives. This has flow-on effects regarding the speed at which disabled people can receive supports, if we can receive them at all. If my GP had listened to me or taken the time to learn about the NDIS, I might not have had to apply so many times.  

I also may not have had to wait a year and two months to get a wheelchair. In bureaucratic time, that’s not very long at all. In the span of my life, it felt like an eternity. After I trialled several different wheelchair models with an occupational therapist, we applied in September 2023. A few months later, the National Disability Insurance Agency (the NDIA, which administers the NDIS), having either not read or understood my application requested evidence that I’d trialled several other chairs. This information was clearly listed in the original report, but, eager to comply, I submitted an additional letter from my physio (paid for with NDIS funds). Several months after that, having heard nothing else, I called the NDIA and was told that my paperwork had been ‘lost’.  

Such long wait times and administrative errors are more common than not, as reported by the ABC earlier this year. Participant anxiety induced by these long wait times has been compounded by uncertainty over if or how certain supports will be allowed under the new legislation. 

As part of the amendment bill, in April 2024 the government released a draft list of NDIS supports that participants can or cannot access through the NDIS; the final list followed in October. The list isn’t an inherently bad idea. In fact, it directly addresses one of the biggest issues facing participants: inconsistencies between NDIA staff about approved supports. The problem is that the government didn’t adequately consult with disabled people to design the draft list.  

That draft support list was released on a Sunday in August, and the community had a mere fortnight to provide feedback. After a hurried campaign and much condemnation from disability advocates, the consultation period was extended by a week – but this still left disability organisations with little time to muster an appropriate response. Some, such as Youth Disability Advocacy Network in Western Australia and the Australian Neurodivergent Parents Association, took to social media to share their concerns. 

As a consequence of this inadequate input from the disability community, the final list excludes vital disability supports and is likely to increase rather than decrease the cost of the scheme.  

Take my hydrotherapy sessions as one (minuscule) example. I use the heated pool at my local gym for hydrotherapy, and before the recent changes to approved supports, I could claim the $10 cost of gym entry as well as the cost of the hydrotherapy sessions. But now, per the final supports list, access to recreational centres such as gyms isn’t funded by the NDIS. 

I’m in the privileged position of being able to pay for entry to my local gym. But if I couldn’t, I’d have to go to the nearest physio clinic with an appropriate pool, which is much further away. Rather than the $10 entry fee and a short Uber trip, I’d be claiming a much longer Uber trip each week as well as intake appointment and admin costs for the clinic. But if I were still allowed to claim that $10 a week for a ‘mainstream’ support, the NDIS would save hundreds, if not thousands, of dollars over the span of a year. Similarly, if a disabled person claims an item that is not on the approved list, which they use due to their disability, they must demonstrate that it replaces a specific NDIS support – and as advocate Charlie Park outlined in a series of Instagram posts, this isn’t always practical.  

The potential consequences of participants misunderstanding or misinterpreting the list are deeply concerning. If participants misspend their funds – even unintentionally – the bill allows the government to raise a debt with those participants and gives them little opportunity to challenge or contest it. Not only that: if participants who incur a debt are self-managed – meaning they have greater flexibility over the supports they use – they risk being moved to plan management as a result, meaning that a plan manager will take over the administration of a participant’s supports: a far cry from the NDIS’s promise of ‘choice and control’. This is a punitive approach that advocates have likened to the notorious Robodebt system. Though government officials have rejected such comparisons, this aspect of the legislation has left many participants wary of having to pay back money for supports that are justifiably disability related.  

Part of this wariness is driven by the lack of agency we’ve had in the process. Yet the potential for inadequate consultation periods and limited co-design was written into the bill. The grassroots campaign Every Australian Counts describes this as a major cause for concern among disability advocates, since ‘The bill requires the minister to consider co-design principles but stops short of making co-design mandatory.’ Disability advocate George Taleporos argues that the government must not only engage in co-design but make changes in alignment with co-design findings. All the co-design in the world is useless if, as Taleporos puts it, ‘the government comes along and says, “No, this is what we’re going to do.”’ Similarly, People with Disability Australia Deputy CEO Megan Spindler-Smith asserts that ‘We know that the only way forward now is through meaningful co-design with our community.’ There are irrefutable issues with the NDIS, and the disability community knows better than anyone what they are and how to address them. 

Why don’t they listen to us? 

AS I WRITE this, the government has begun consultation with the community on the next phase of the bill. But have they learnt anything from our initial response?  

I remain simultaneously full of doubt and stubborn hope. Changes to the NDIS (or any disability systems) should be empowering rather than punitive. Should only be designed with and by us. Our existence and quality of life is worth more than any dollar sign, and it’s about damn time the government made its decisions accordingly. If it doesn’t, I’ll write and fight alongside my community. Every word becomes an assertion of our human rights, every blog post, social media update, media statement and submission an ongoing testament to our strength and persistence. 

We’ll make them listen to us. 

Image by Bernd Klutsch, courtesy of Unsplash