Empowering Voices: Ensuring People with Disabilities Have a Seat at the NDIS Decision-Making Table

A lot is being said about the NDIS – the main federal government program to codify and enshrine our human rights but regretfully people with disabilities are not being given a seat at the tables where politicians and bureaucrats are determining the future of a scheme we fought for over 40+ years.

The ask was simple – a rights-based model to access disability care and support, a yarning from parents and carers for a fair and just society that will love, respect and include their sons and daughters long after they pass. They warned of burnout and a system at its breaking point – that was in 2009, today in 2026 we have come full circle but worse with the toxicity of AI and a media landscape that drive a dominate discourse of leaners and lifters, of rorters and welfare bludgers.

This is not the lived reality, people with disabilities aren’t going to the cinemas on the pubic coffers, no dogs get walked nor holidays are taken using taxpayers’ money, our shared reality post-pandemic is bleak at best. Instead of building back better, mainstream Australia ignores growing inequality widening not because there are more people with disabilities in terms of population rather a growing destigmatisation which allows people with disabilities to unmask, however, this goes further – shame, stigma and concealment masks the true prevalence of disabilities. If you have a disability, the stereotype is you are not ‘normal’.

A walker, a wheelchair is only the tip of the iceberg – the general public cannot grapple with living life everyday that just due to your impairment, you do not belong and this angst is only further compounded by the body politic framing people with disabilities as a burden, a cost, a drain on society.

Why? People with dis abilities aren’t too dissimilar to able-bodied people – the same needs, wants and desires. Yet whenever there are economic tailwinds, our inclusive ambitions for a fair and just society for all. Australia is commonly portrayed as ‘the lucky country’ or ‘the land of the fair go’, well in the spirit of mateship, to this day it is confounding that where you live, your socioeconomic status and your disability can and will determine your ability to give effect to your rights and dignity.

People are people, we are far more than the sum total of our impairments – do they make our lives harder? Yes Are there days we wish our impairments would disappear? Yes But are there cures or treatments that will fully make our impairments disappear without inadvertently changing or erasing the individual that the hardship of our disabilities has forged? NO, because who we are is far more than where we learn, live and play, it is more than our homes, schools, universities, TAFEs, day programs or therapy centres.

A good life for people with disabilities means that we are not framed as burdens, as drains, as passive entities, conversely a good life should evoke a groundswell of pride, courage and tenacity that both celebrates when we are included yet uses the times when we do endure the indignity of exclusion to give us pause, to recognise that progress towards an inclusive society will only be realised when we as a disability community fight for it, when we rise above the flawed argument that all disability support is welfare, charity or goodwill.

This casts people with disabilities as one dimensional, as leaners or lifters, as workers or pensioners, but moreso as participants or as people in our own right. Our mere existence is reduced to the size of our NDIS plans without due consideration to how our care and supports improve our quality of life rather than just getting a support worker etc. that just adds to the coffers of providers while the meagrely paid worker either struggles to make ends meet or treats their support work as a side hassle, a means to an end in our relentless cost of living crisis.

If this is the status quo and the only solutions on the table is Thriving Kids and so-called ‘foundational supports’, one may ask: well, what policies will the government be building upon those foundations?’. The policy rationale should not be framed within narrow economic terms as ‘cost-shifting’, ‘productivity’ or ‘growth’. No government policy be itself will stem the tide of ballooning and burgeoning costs as a lead weight on the national accounts they may be but the costs of lurching backwards to the times of block funding and a crisis-driven system will only serve to fray our already fragile social cohesion.

The NDIS is more than just a government program, it is a social compact between people with disabilities, their families and friends with the community and government regardless of party or ideology acknowledging our past of institutionalisation and segregation that as we are crafting our future, in doing so, we learn from the missteps and traumas so that we may emerge from a not dissimilar time of pandemics and wars with a renewed and embolden vigour to build forward better to realise our right to self-determination so that we can write the chapters in our collective struggle for a kind, just and fair society for people with disabilities humbled in the knowledge that our fellow neighbour is making the care and support we rely on possible.