Submission 2346
NDIS Bill Submission
I am writing as both an NDIS participant and the parent of two disabled children. Our disabilities can be invisible from the outside, but the cumulative impact on our daily lives, health, functioning and ability to participate in society is significant and debilitating. I am concerned that the proposed reforms risk overlooking the cumulative and interconnected nature of disability within families, particularly where multiple family members require support.
One of the most distressing aspects of the current NDIS debate is repeated public statements suggesting that many participants, including children receiving early intervention supports, have only “mild to moderate” disabilities and were never intended to be supported by the scheme. It’s particularly distressing given that the NDIS was deliberately designed to include children and early intervention supports, recognising that investing early in development, independence and family stability is both better practice and ultimately more economically responsible than waiting for people and families to reach crisis point.
The current rhetoric doesn’t align with the lived reality of our family and other people I know within the disability community. We were directed to apply for NDIS access by multiple healthcare professionals and were required to provide significant evidence and assessments of permanent functional impairment as proof we met the threshold. This rewrite of history is creating fear, shame and instability for disabled people who are already struggling to maintain functioning in a society that is not built for them.
I’m deeply concerned by proposed legislative changes that appear to reduce the importance of lived experience, individual outcomes and consideration of the person as a whole in favour of narrower evidentiary frameworks that strip away important personal and family context.
My direct experience of disability is of cumulative and interacting layers of impairment, health issues, caregiving responsibilities and systemic barriers. The impact of managing my own disabilities, alongside the needs of my children and a medically vulnerable partner, led to severe burnout, deterioration in my physical health and mobility, social isolation and loss of work capacity. The effects of this gradually snowballed throughout our family, with my partner increasingly forced to take on additional caregiving, household and emotional responsibilities as my own functioning deteriorated, ultimately contributing to significant burnout for him as well.
NDIS support has helped create stability so I can start to recover from burnout, and better support my family. For example, school pickup caused sensory overload and exhaustion which reduced my ability to function for the rest of the day. Having support with this task has allowed me to spend more meaningful time with my family and begin addressing my own health needs. I have been able to help my children meet their own therapy and educational goals such as developing social skills, independence, physical confidence and emotional regulation in ways that will reduce their long term care needs. These outcomes are difficult to reduce to simplistic financial calculations, but they are immensely important to our family.
I am also concerned by the broader rhetoric surrounding these reforms. Public discussion has been increasingly framing disabled people as a financial burden rather than members of the community whose participation benefits society as a whole. Withdrawing disability support simply transfers financial and societal costs to hospitals, mental health systems, unpaid carers, lost workforce participation, family breakdown and worsening long-term disability.
Prior to NDIS support I was admitted to ER on numerous occasions due to physical and mental health decline, my marriage was under significant strain, my relationship with my children was deteriorating and I was unable to work. My partner was contemplating how he could continue working while carrying on increasing caregiving responsibilities. If
Submission 2346
he’d have had to leave the workforce, it would have led to devastating financial consequences for our family and increased costs to taxpayers through lost workforce participation and increased reliance on income support and crisis services.
NDIS support has helped stabilise our family and given me hope that, with the right supports in place, I may eventually be able to return to work in some capacity using my qualifications as a secondary maths and science teacher to help address critical workforce shortages in the profession while also providing lived experience and understanding to support students with disability. The prospect of losing supports threatens not only our family’s stability, but also the possibility of rebuilding health, independence and future workforce participation.
Our family’s NDIS funding also supports employment within the community itself. We currently employ several casual support workers, including one who is also an NDIS participant. The flexibility of disability support work has allowed us to provide employment opportunities for people who also require understanding, flexibility and support within their own lives. This reflects another often-overlooked aspect of the NDIS: it does not simply support participants in isolation, but also sustains employment, community connection and economic participation for many others. Significant cuts to the scheme would have ripple effects extending far beyond individual participants.
This concern is reinforced by both the original Productivity Commission rationale for the NDS and subsequent economic modelling surrounding the scheme. The Productivity Commission recognised the long-term economic and societal benefits of investing in disability support and early intervention. Subsequent modelling by Per Capita and National Disability Services suggested that every dollar invested in the NDIS returns approximately $2.25 to the Australian economy through increased employment and economic activity. The same modelling estimated that every $1 billion removed from the scheme could reduce economic activity by approximately $2.25 billion and result in the loss of more than 10,000 jobs.
When these figures are considered against the government’s proposed $35-$38 billion in cuts, the potential economic consequences become staggering. During a cost of living crisis, it is economically reckless to introduce changes that could shift an estimated $80 billion in costs onto already overstretched downstream systems while also threatening hundreds of thousands of jobs. These impacts will not occur in isolation. They will disproportionately affect sectors already under immense pressure, including healthcare, education, mental health and disability support services, alongside a workforce that is predominantly female. They also risk pushing more women out of paid employment and back into unsupported caregiving roles, transferring costs from government systems directly onto families while reducing workforce participation and long-term economic productivity.
Much of the public discussion about the NDS has focused on “shonks and fraudsters”, “rorts” and cost blowouts. This has shifted over time into increasing suspicion toward participants, with the consequences of “cost containment“ often landing not on bad actors, but on disabled people and their families. Very little scrutiny has been directed toward the conduct and decision-making practices of the NDIA itself.
In my own experience, I was directed by an NDIS assessor to obtain two specialist reports costing more than $1,000, but the access decision was made before the reports were even completed. We had to cancel therapies that would have benefited my son to accommodate this expense. On another occasion, a planner arbitrarily decided to override my therapy team’s recommendation for physiotherapy in favour of exercise physiology, despite this being clinically inappropriate. Similar stories abound in disability spaces, and raise serious concerns about administrative waste, inefficiency and the appropriateness of unqualified decision-makers overriding specialist therapeutic recommendations.
Within the disability community there are increasing reports of participants experiencing unexpected plan reductions, highly adversarial review processes and significant cuts decided through what participants believed were informal check-ins rather than formal reassessments. People report being told to consider relinquishing care of their children when
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seeking respite and describe living in a constant state of fear and instability, uncertain whether essential supports may disappear with little warning. I was initially hesitant to submit this at all due to concerns about being identifiable within a system my family depends upon. I have seen members of the disability community openly express fears of retaliation, and those concerns are difficult to dismiss entirely within the climate of fear that has been created.
This fear is not occurring in a vacuum. There have already been highly publicised cases in which medically necessary supports were reduced or withdrawn with devastating consequences, including participant deaths following the removal of essential care. Disability providers have described situations where they felt ethically unable to leave participants unsupported once funding ended, in some cases resorting to ambulance call-outs because no safe alternative care existed. These examples demonstrate that disability supports are not abstract budget categories. In practice, they may represent ventilation monitoring, eating assistance, supervision to prevent self-harm or other forms of life-preserving care.
This is particularly concerning in the context of proposed legislative changes that would give ministers broad powers to restrict or remove categories of supports across the scheme. There appears to be little assurance within the legislation itself that essential or life-preserving supports would be protected from broad funding restrictions. A system designed around increasingly narrow categories and centralised discretionary powers risks creating more indiscriminate harms by losing sight of the actual human realities those funding categories represent.
The psychological impact of this growing instability should not be underestimated. Within the disability community there is increasing discussion of hopelessness, despair and fear surrounding the potential loss of independence, safety and dignity. Some are actively discussing plans for VAD. The success of the NDIS should not be measured solely by short- term expenditure reduction, but by whether disabled people and their families are safer, healthier, more stable and better able to participate in society over the long term.
The NDIS does need reform. Fraud, exploitation, inefficiency and harmful NDIA practices should be addressed wherever they occur. However, the current “Getting the NDIS Back on Track” bill instead targets participants in ways that are cruel and economically counterproductive. There is a profound difference between improving a system and destabilising the lives of disabled people who rely on it for safety, dignity and participation in society. Increasingly, it feels as though the public conversation has lost sight of this distinction.
A society should ultimately be judged not only by economic metrics, but by how it treats people during periods of vulnerability and dependence. The original vision of the NDIS recognised that early intervention, individualised supports and investment in participation were not only compassionate, but economically and socially responsible. Supporting disabled people and their families is not simply a moral investment, but an economic one, with sustained supports enabling education, employment, independence and broader economic participation that may otherwise be impossible, while also helping prevent far more costly outcomes such as burnout, health deterioration, ICU admissions, hospitalisation, premature entry into residential care and loss of workforce participation.
What concerns me most is that this bill and the current NDIA culture are focussed more on suspicion and scarcity than on prevention, stability and human wellbeing. Moving away from a preventative and individualised model toward increasingly adversarial, centralised and crisis-driven approaches risks creating far greater long-term human and financial costs. As both a disabled person and a parent, I fear the consequences of a system that only recognises the value of support after people and families have already collapsed.