Submission to the Senate Committee Regarding the National Disability Insurance Scheme
Amendment (Securing the Future of the NDIS) Bill 2026
Submitted by: Annette Pham
My name is Annette Pham, and I am the mother of, Liam, who is 24 years old and a participant in the National Disability Insurance Scheme (NDIS). Liam has two younger brothers Ryan 18 and Adam who is 13. We live on the south coast of New South Wales.
Liam was born with Cerebral Palsy and has a chromosomal abnormality. He is profoundly intellectually disabled, has severe epilepsy, a restrictive lung disease, is PEG-fed, and requires support and supervision 24 hours a day. He cannot walk or speak and relies entirely on others to meet his daily needs and ensure his safety.
I am writing to strongly oppose aspects of the proposed changes contained within the National Disability Insurance Scheme Amendment (Securing the Future of the NDIS) Bill 2026. I do so not only as Liam’s mother and lifelong advocate, but as someone who remembers what life was like before the NDIS and who has witnessed firsthand the extraordinary transformation that individualised disability funding has brought to the lives of people with disability and their families.
The NDIS has been life-changing for Liam, our family, and our broader community. I am deeply concerned that the proposed changes, while presented as necessary for the sustainability of the Scheme, risk undermining the very principles upon which the NDIS was built.
Life Before the NDIS
It is difficult to overstate how challenging life was before the NDIS.
For many years our family struggled to provide the level of care and support Liam required. Services were limited, fragmented, and often inaccessible. Liam had very little opportunity to participate in community life. Access to therapies was inadequate. Respite was scarce and difficult to obtain. As Liam’s care needs increased, I was forced to leave the workforce in order to care for him full-time.
The impact extended beyond Liam. Our entire family was affected by exhaustion, isolation, financial pressure, and uncertainty about the future.
Most importantly, Liam’s world was incredibly small.
Like many people with profound disability before the NDIS, he was expected to fit into whatever services happened to exist rather than being supported to live a meaningful life based on his own needs, interests, and aspirations.
The Transformative Impact of the NDIS
The NDIS changed everything.
For the first time, Liam was recognised as an individual rather than as a burden to be managed through a rationed service system.
The NDIS has provided opportunities that simply did not exist before.
Through individualised funding, Liam has been able to:
Participate meaningfully in community life.
Access therapies that improve his health and wellbeing.
Build relationships with people who know and care about him.
Experience activities and opportunities tailored to his needs.
Live a richer, more connected life.
Be seen as a valued member of the community rather than someone who should be hidden away in segregated services.
The benefits extend beyond Liam.
The NDIS has enabled our family to continue caring for him while maintaining our own wellbeing. It has reduced family stress, improved our quality of life, and provided hope about Liam’s future.
Most importantly, it has given Liam a life worth living.
Concerns Regarding the Proposed Changes
- Existing Participants Should Not Bear the Cost of Budget Savings My greatest concern is that current participants will experience reductions in supports and funding in the name of “sustainability.”
People with disability should not be expected to sacrifice essential supports simply because governments are seeking to reduce expenditure.
The NDIS exists because Australians recognised that people with disability deserve the same opportunities as everyone else. It was established because previous systems failed.
Reducing plans, restricting supports, or narrowing access may save money on paper, but the human cost will be enormous.
The most vulnerable members of our society should not be treated as line items in a budget.
It is unconscionable to suggest that significant savings should be extracted from people with profound disabilities while governments continue to provide tax concessions and benefits elsewhere.
The sustainability of the Scheme cannot be achieved by reducing the quality of life of the people it was created to support.
- Fraud Should Be Addressed Without Punishing Participants If there are concerns regarding fraud, overcharging, or misuse of NDIS funds, then governments should focus on identifying and prosecuting those responsible.
Participants should not be penalised because of failures in regulation, oversight, or provider conduct.
The answer to fraud is:
Stronger regulation.
Better auditing.
Improved compliance.
Investigation and prosecution of wrongdoing.
The answer is not reducing supports for people with significant disabilities.
Families like ours did not create the problems within the system. We should not be expected to bear the consequences.
The Bill rightly strengthens integrity measures (provider registration, civil penalties, digital payments, tighter record-keeping). We support cracking down on rogue providers and wasteful practices.
However, these steps will not save billions on their own. It is a red herring to pretend that participant misuse is the main cost driver. In reality, as even the NDIA admits, most “fraud” cases involve paperwork discrepancies by providers, not disabled people ripping off the system. It is unfair to use this as justification to cut genuine supports.
We emphasise: fraud enforcement should target bad providers and ring-fence participant funding. The plan management reforms and 90-day claiming window may prevent duplicate claims, but they also introduce risk for participants who rely on helpers to keep records. We worry that minor technical mistakes (e.g. forgetting to get a receipt) could be treated as debt by the NDIA, leaving people without the cash they need each day. The Bill’s emphasis on compliance must not come at the expense of people like Liam, who cannot keep track of paperwork himself. Instead of penalizing us, the government should ensure the NDIA has the resources to audit properly and prosecute truly fraudulent providers.
- The Return to Block-Funded Models Would Be a Major Step Backwards One of my deepest concerns is any move toward greater reliance on block-funded services or pooled models of community participation.
Many policymakers discussing these changes may not remember what disability services looked like before the NDIS.
Families do.
People with disability do.
Before individualised funding, many people attended large group programs that functioned primarily as adult minding services.
People were expected to accept whatever activities were available regardless of their interests, goals, or aspirations.
These services often:
Offered little genuine skill development.
Limited community inclusion.
Restricted personal choice.
Segregated people from broader society.
Focused on occupancy rather than outcomes.
The reason many of these programs declined after the introduction of the NDIS is simple:
People voted with their feet.
When given a choice, individuals and families overwhelmingly chose individualised supports because they delivered better outcomes.
Individual funding allows people to:
Build lives around their own goals.
Pursue personal interests.
Develop skills.
Form meaningful relationships.
Contribute to their communities.
Exercise genuine choice and control.
Returning to block-funded models would represent a return to a system that people with disability have already rejected.
The Grattan Institute and others have warned that commissioned services “tend to shrink” over time without individual budgets. Yet the Bill plans to funnel tens of billions into such programs, after cutting the personalised supports that disabled people actually use. PWDA emphasises that any shift to new foundational or mainstream supports must only occur after those services are fully built, something not assured here. In fact, the Federal Budget papers barely allocated $10b over 5 years (half from states) for foundational supports; a tiny fraction of what participants get now.
In summary, this is a raid on participant budgets to prop up what are essentially bloc grants. Liam deserves not a meagre government program, but the full support to live his life. We refuse to be bargaining chips for broader budget targets. The NDIS was created precisely because families were
already doing too much unpaid work. To undo that by funding family care instead of professional support is backwards.
- Changes to Eligibility Must Include Genuine Safeguards The proposed changes to eligibility and assessment processes raise significant concerns.
If governments intend to remove people from the NDIS or restrict access for future participants, safeguards must be established first.
Too often, people are told they can rely on “mainstream services” without any evidence that those services actually exist or have the capacity to provide support.
Before anyone loses access to the NDIS, governments must demonstrate that:
Alternative services are available.
Services are adequately funded.
Waiting lists are reasonable.
Support levels are sufficient.
Individuals will not experience a decline in health, wellbeing, participation, or safety.
Removing people from the Scheme without creating functioning alternatives simply shifts costs and hardship onto individuals, families, health systems, and carers.
The burden does not disappear. It merely falls on those least able to carry it.
- Housing and Supported Living Must Be Protected The NDIS has created opportunities for people with disability to live in homes that suit their needs rather than being forced into inappropriate group settings.
For many parents, this has been one of the most significant achievements of the Scheme.
Families have spent decades worrying about what would happen when they are no longer able to provide care.
The development of Supported Independent Living and Specialist Disability Accommodation has offered genuine alternatives.
Many families remember the history of institutional and congregate care arrangements where:
People had little choice.
Residents were grouped together based on disability rather than compatibility.
Individuals experienced neglect or poor-quality support.
Families had limited influence over living arrangements.
The NDIS has helped create a future where people with disability can live in homes that promote dignity, safety, relationships, and community inclusion.
Any changes that reduce access to these options risk reversing years of progress.
Therefore, we are also alarmed by signals that the Bill will change how housing and support services are arranged. The Guardian reports that Minister Butler mentioned “direct commissioning of disability accommodation, plan management and support coordination” as a forthcoming change.
This suggests state or federal governments may start centrally allocating who can live where, rather than individuals choosing or building their own homes with SDA/SIL funding.
The architects of the NDIS deliberately shifted from institutional block funding to individualised supports so people could live in ordinary homes. Going backwards here would be a tragedy. We have seen too many horror stories of people with disability stuck in unsuitable group homes with poor care.
Liam’s dignity, and mine as his mother depends on having control over his living arrangements and support staff. The idea of “commissioned housing” is frightening.
Similarly, the expansion of mandatory registration (e.g. for personal care, daily living supports) is understandable for quality control. But forcing 90% of all payments through registered providers and digital systems must not come at the cost of choice. If my family can no longer hire a trusted local carer simply because they haven’t jumped through digital hoops, that would narrow our choices. Any new regulation should be implemented with care so as not to cut off genuine small providers or informal supports.
- Impact on Carers and Families The Bill codifies a new emphasis on parental responsibility. It explicitly lists tasks (personal care, transport, emotional support, behaviour support, ADLs, etc.) that parents are “reasonably expected” to provide. The NDIA is directed that, for any child, it “must not approve a support if its primary purpose is to reduce parental burden below what is reasonably expected”. For all participants, the Agency “must consider the desirability of maintaining and strengthening informal supports rather than replacing them with funded ones”.
This is deeply concerning. It essentially tells parents: “We will expect you to do it first; we will only pay if you can prove it is beyond normal parent duty.” This ignores the fact that many families are already exhausted, in poor health, and often forced out of the workforce by current caring demands. The Productivity Commission and international research are clear: investing in formal supports actually reduces carer breakdown, keeps parents working, and saves money downstream. PWDA rightly warns that focusing on “parens responsibilia” while cutting supports undermines the Scheme’s founding rationale. In our case, if this rule is applied strictly, we could lose funding for basic nursing care simply because “as a mother, I’m supposed to do it.” This would likely cause burnout, parental mental health crises, and ultimately more strain on emergency and welfare systems.
Liam’s Story
My son Liam requires support every minute of every day.
Without the NDIS, his life opportunities would be dramatically reduced.
Without the NDIS:
Community participation would diminish.
Therapeutic supports would become harder to access.
Family carers would face overwhelming pressure.
Future housing options would become uncertain.
Social isolation would increase.
The NDIS has allowed Liam to flourish in ways that would have been unimaginable under previous systems.
He is known in his community.
He is loved by the people who support him.
He participates in activities that bring meaning and enjoyment to his life.
He has relationships and experiences that enrich his world.
These outcomes matter.
People with profound disability may not be able to advocate for themselves in traditional ways, but their lives have equal value.
Their happiness matters.
Their participation matters.
Their dignity matters.
Recommendations
I respectfully recommend that the Committee:
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Protect Existing Participants Guarantee that existing participants with permanent and significant disabilities do not experience arbitrary reductions in funding or supports as part of cost-containment measures.
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Focus on Fraud and Provider Misconduct Invest in compliance, auditing, and enforcement measures that target fraud without reducing participant supports.
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Preserve Individualised Funding Maintain the principle of individual choice and control and reject any broad shift toward block funded service models.
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Establish Robust Safeguards Before Eligibility Changes
Ensure that no participant loses access to necessary supports until genuine alternative services are available, funded, and independently evaluated.
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Protect Housing and Community Living Options Maintain access to Supported Independent Living and Specialist Disability Accommodation for those who require it.
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Place People with Disability at the Centre of Reform Any reform must be developed with meaningful consultation involving people with disability, families, carers, advocates, and service providers.
Conclusion
The NDIS is one of Australia’s most important social reforms.
For families like mine, it has not simply funded services. It has transformed lives.
It has replaced isolation with inclusion.
It has replaced dependency with opportunity.
It has replaced uncertainty with hope.
The future sustainability of the NDIS is important. However, sustainability cannot be achieved by reducing supports to people with disability or limiting opportunities for those who rely on the Scheme to live meaningful lives.
People with disability are not bargaining chips in political negotiations. They are citizens entitled to dignity, respect, opportunity, and support.
My son Liam’s life has been transformed because of the NDIS. Thousands of other families could tell similar stories.
I urge the Committee to reject any measures that diminish the rights, opportunities, and quality of life of people with disability and instead focus on strengthening the Scheme while preserving its founding principles of choice, control, inclusion, and dignity.