Dear Committee members,
I respectfully ask that you consider this late submission as our message is that the NDIS is broken now, and further changes should not occur until the system is fixed.
Our daughter is one of the intended beneficiaries of the NDIS
We are the parents of a young woman with permanent disabilities, and high and complex functional support needs.
Our daughter is precisely the sort of person the NDIS was intended to support. We believed Parliament’s promise in 2013 that “people with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime” (s4(3) NDIS Act 2013).
The NDIS was life changing for the first 8 years – and could still be, if implemented as intended
Until now, our family would have been a case study in the success of the NDIS. With support worker hours and funding for programs and therapy, our daughter has improved her communication and literacy skills, tried new activities, forged new friendships, improved in confidence and mobility thanks to an assistance dog, achieved some independence and privacy in her personal care through home modifications, and participated and thrived in post-school programs using funds from the 2023-26 NDIS plan.
We moved from reliance on income support to running a thriving full-time business ( ) and upgrading post-graduate qualifications, costing $11,000, and re-entering
the workforce after being the primary carer ( ). ’s re-entry to the workforcewas an explicit goal of our daughter’s 2023 NDIS plan.
With our improved financial position, we have improved housing security and no longer rely on grants applications and charity funding to privately meet other costs associated
with ’s needs. With support workers looking after our daughter, and I havebeen able to afford, and have time for, exercise and attend long term therapy to improve our mental health.
The 2024 reforms to the NDIS have failed us
Parliament’s 2013 promise, enshrined in legislation, has been broken through the 2024 ‘reforms’ and we are devasted and exhausted. We urge you not to support the further ‘sustainability’ reforms until the unintended, perverse consequences of the 2024 changes are corrected.
In 2026, our daughter received a post-school NDIS plan with fewer supports and no funding for post school programs, forcing us to reduce work hours and putting us in danger of burnout
To explain:
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For the first eight years of the NDIS, our daughter had consistent reasonable and necessary supports from the NDIS
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In her most recent plan, just as she approached adulthood and the end of school, our daughter’s new plan: o Halved support worker hours despite functional support requirements remaining unchanged and evidenced by a current occupational therapy assessment o Did not fund any post-school programs (work experience, work skills, learning or life skills programs) leaving her with nothing meaningful to do at the same time that 30 hours of full time schooling ended o Through these cuts, effectively returned our daughter to our full-time care o Endangered our daughter’s safety by creating unsustainable care arrangements which we cannot feasibly sustain long term o Forced us, her exhausted and ageing parents, to stop or reduce paid employment, thereby increasing financial stress in a cost-of-living crisis o Compounded this financial stress by not funding expensive, life sustaining PEG feeding consumables and continence aids (previously funded by the NDIS, and clearly linked to her disability support needs) o Left us worse off than before the NDIS came into being, because at the time the NDIS was introduced, our daughter had 1:1 support through the education system for 30 hour per week, for 13 years
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Since the decision on 20 May 2026, we’ve spent approximately 80 hours writing a request for internal review and wait anxiously in the hope of a favourable outcome. This enormous stress has coincided with a period of ill health for our daughter and navigating a complex transition from the paediatric to adult health system.
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We’ve had to fight this bad decision while also being left without the supports we’d had for eight years.
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Without any transition funding or warning, we’ve had to terminate three of four longstanding, skilled support workers with no notice – two of whom recently acquired mortgages on the basis of their income, partly derived from support work for our daughter.
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We are completely devasted and despair for the future. Having been accepted on the scheme, we never imagined we could go so far backwards and be fighting yet again for basic, reasonable, necessary and evidence-supported requests.
The plan reassessment was deeply and demonstrably flawed
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The plan did not appear to include consideration of the evidence provided, despite us having submitted it well ahead of the plan reassessment meeting: o At the reassessment meeting, the delegate admitted she had not reviewed any of the evidence we’d submitted and asked us to explain, from scratch, our daughter’s disabilities and support needs o A different delegate then made the decision, who’d never even met us or spoken to us o The plan contains cut and pasted content from historical plans (goals and participant statements) and refers to family members (informal supports) who have since died or developed dementia, primary school care arrangements (our daughter is in year 12), equipment no longer used and home modifications completed four years ago.
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The statement of reasons given by the delegate was generic and did not explain why the requested support had not been funded, nor how the unfunded support needs were to be met.
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All our friends in the disability community are experiencing similarly flawed plan reassessment processes and outcomes.
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Some of our friends have been contacted by phone for a ‘quick check in’ and then received a new, and severely reduced plan the next day, without any transparency that the phone call was a plan reassessment and without any opportunity to prepare or provide evidence.
The government’s statements do not reflect the reality of our experience
Minister Butler says these reforms aim to ensure the NDIS can help the most vulnerable, but what’s already happened to us is automatic cuts to a plan by staff who don’t understand disability or, as in our case, are failing to even read the evidence we spent months compiling.
Comments in the media from the NDIA talk about planners receiving ‘intensive and ongoing training’ and ‘considering all available evidence’ but this is simply, and demonstrably, not true based on our experience.
It’s time to urgently pause the next tranche of reforms, and stop the perverse outcomes of the 2024 changes
A major story being told by advocates at the moment is that the proposed reforms should not go ahead without further, meaningful consultation with the disability community. We agree with this wholeheartedly.
But we also say – the NDIS is broken now. It’s failing the vulnerable people the government claims to be most concerned about. Its social licence has been broken by the constant barrage of stories about fraud, even though this is not the major cost driver and is mostly committed by providers, not participants.
The cuts punish participants and in our case, have the perverse outcome of failing to give our daughter any meaningful pathway to employment nor to participate in social or community life and fail to consider what’s reasonable to expect of parents and carers.
As many advocates are saying, the changes aren’t eliminating costs – they’re shifting them to already exhausted and stressed-out families.
In our case, the NDIA materially failed to meet its legislative obligations, and the widespread poor decision making is evident in the rate of Administrative Review Tribunal decisions that are overturning NDIA decisions.
Please – do not let these change be passed into law and do not remove the ability of the Administrative Review Tribunal to overturn decisions. Slow this down, and fix the NDIS rather than further destroy it.