Disability cuts in the budget: A discussion about us, without us
By Jane Britt
As a NDIS participant who is deafblind, it has been damaging to listen to inflammatory commentary with no right of reply, writes Jane Britt.
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As the NDIS commentary rolls on, the framing of the reforms and the language used to discuss the disability community is getting worse.
After months of media scrutiny and fear-mongering, Minister for Disability and the NDIS, Mark Butler, took to the National Press Club in April to announce plans to remove 160,000 people with disability from the National Disability Insurance Scheme (NDIS) by 2030.
Also revealed were cuts to the social and community participation budgets that enable NDIS participants to access the community beyond their front doors. Last week, the Budget papers and NDIS Amendment Bill shed more light on eligibility tightening, introducing a requirement to have undertaken all available ‘treatment’ options before being eligible for the Scheme, irrespective of cost or locality. We also learned of the removal of whole-of-person assessment in favour of a single eligible impairment, stripping any consideration of interacting conditions.
It’s a shake-up that has generated heated public discussion, signalling how much is at stake for so many Australians. As noted by The New Daily’s 7am podcast, the tactical timing of the initial announcement served to desensitise the public weeks before the full extent of the cost-cutting measures were tabled in the Budget and NDIS Amendment Bill. It’s shaped a public discourse that has ranged from sympathetic to openly hostile, and completely free of empathy.
The worst of this discourse has been bolstered by the Government’s Inquiry into the Integrity of the National Disability Insurance Scheme. With terms of reference centred on fraud, the inquiry has fuelled extreme, sweeping generalisation about rampant fraud and non-compliance across the Scheme.
Mark Butler’s description of bad actors as ‘shonks, grifters, fraudsters and crooks’, has only further fuelled debate, with any distinction between provider and participant lost. Minister for the National Disability Insurance Scheme, Jenny McAllister, provided the context the public missed: that ‘the vast majority of NDIS providers are outstanding organisations.’
While I cannot speak for an entire community, as a NDIS participant who is deafblind, it has been damaging to listen to inflammatory commentary with no right of reply. We are not a fiscal measure. We are real people watching commentary about us, without us being able to interject to disrupt the discourse.
Disability is not one experience. Our needs fluctuate and look different from person to person, yet we are being swept into one generalised category of “people with disability.” Few have acknowledged that the majority of the 3.2 million Australians under 65 with a disability cannot even access the Scheme in the first place - the NDIS only covers around 760,000 participants.
Democracy enables open, respectful debate. There is a guardrail though, which is that commentary infringing on people’s rights and dignity crosses a line. Some of the commentary we have seen recently about our disability community is dangerously close to the edge. Free expression and human rights are not opposites in a democracy - they are meant to coexist. The guardrail is not censorship. Rather, it is recognition that commentary which dehumanises a group, repeated and unchecked, erodes the conditions for equal participation in that same democracy.
Australia is a signatory to the UN Convention on the Rights of Persons with Disabilities (CRPD), which requires us to ‘combat stereotypes, prejudices and harmful practices relating to persons with disabilities’ and ‘promote awareness of the capabilities and contributions of persons with disabilities.’
This obligation is implemented through the Community Attitudes outcome area of Australia’s Disability Strategy 2021-2031 (ADS), which notes that stigma, unconscious bias and lack of understanding of disability are profound barriers to independence, and to access to services and society at large. Improved community attitudes are positioned as the pathway to better outcomes across housing, employment, education, justice, health and community access for people with disability.
As a person who is impacted by the reforms themselves and the ensuing discourse, the antipathy from pundits online has been demoralising. It feels as though we are asked to justify every aspect of how we show up in the world. Asking for access to undertake the same activities as anyone else is received as asking for something extraordinary. It is not.
Although disabled voices have been included in the initial waves of media, the discussion over the past couple of weeks has largely evolved without us. Even now, we are invited to comment in media spaces, but not to wield the pen ourselves and provide a perspective that is wholly grounded in lived experience.
Debating the rights of a marginalised group, without nuance, in a context where that group has no power to correct the record, functions as bias regardless of intent.
In his Press Club speech, Mark Butler implied reforms would reflect the advocacy slogan: ‘nothing about us without us.’ Yet, the public commentary that has followed has pushed people with a disability to the sidelines. Reforms have been rolled out with a post-script discussion, where the people they impact most feature a mere footnote in publications. It is about us, without us.
About the author
Jane Britt is a disability policy consultant, NDIS participant and deafblind woman. She has over a decade of national experience in disability policy and advocacy, including direct contributions to the Disability Royal Commission and NDIS Review, and is a regular media commentator on disability rights.
Thank you for this piece. My 6 year old daughter has a rare chromosomal duplication which causes various physical and neurological delays. Without the financial support from the NDIS she would 100% not now be in mainstream school this year. She wasn't walking or talking at 2 years old, and thanks to YEARS of hard work by me and her healthcare team, she has worked with physios, speechys, psych, doctors and an amazing OT. I really hate the rhetoric that this system is expensive, rigged or being abused. The process to actually be awarded funding is SOOOO arduous, that no one is applying for this funding without genuine need. And without it, the medical and education systems would crash. The invisible cost to me has meant total burnout and loss of work hours, but that doesn't factor in.
Great article Jane. I agree, the most frustrating part of this whole debacle has been the obvious lack of disabled lived experience input. This shouldn't be an afterthought; consultation with the people who are directly impacted should be the first step in any reform, especially with vulnerable populations. Thanks Cheek for continuing to talk about this issue!