Alison Penfold (Lyne, National Party) Share this | Hansard source

I rise to speak on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, and I do so acknowledging something that every member in this place should understand very clearly: behind every clause in this bill is a person—a child with profound autism whose parents are exhausted and frightened about the future, a young person with an acquired brain injury trying to rebuild their life, a mother caring for an adult son with disability and wondering what will happen when she is no longer there, a regional family already stretched by the cost of living and trying to navigate a system that too often feels confusing, adversarial and impersonal.

For many Australians, the NDIS is not an abstract policy debate; it is the way to help people with disability live their life. I can't imagine what life would be like now for people with disability without the NDIS. It remains one of the most significant social reforms in our nation's history. It changed the way Australians with disability are seen and supported. It recognised that people with disability deserve opportunity, inclusion and respect. But we also know that confidence in the scheme has been undermined by serious concerns about waste, exploitation, fraud and unsustainable growth.

Australians rightly expect that taxpayer money—their money—intended for vulnerable people is used properly. Participants themselves are often the first to say that the current system is not working as it should. Families are frustrated by inconsistent decisions. Participants are overwhelmed by bureaucracy. Good providers are being undercut by dishonest operators, and genuine participants are increasingly worried that the actions of a minority are threatening the long-term sustainability of the scheme itself. That is why there is broad support for measures that genuinely target fraud, abuse and exploitation within the NDIS. The disability community understands that, if public confidence in the scheme collapses, the people who will suffer most are those who genuinely rely on it.

The concern many people have with this bill is that, while it contains significant structural and access changes, it appears to do comparatively little to directly address the organised fraud and rorting that Australians have repeatedly been told is occurring inside the scheme. The bill does introduce some fraud related measures, including tightening record retention obligations, shortening claim timeframes from two years to 90 days, expanding some information-gathering and regulatory powers and enabling greater automation and digital oversight of payments and claims. Those measures may help improve compliance and administrative integrity, but many participants, carers and providers are asking a fair question: where are the measures that actually go after the criminal networks, organised exploitation and deliberate abuse that have so badly damaged confidence in the scheme?

This bill asks a great deal of participants and families. It tightens access requirements. It narrows assessment eligibility. It strengthens the connection between impairment and support needs. It introduces new powers to reduce support funding. It changes the definition of 'permanence'. It creates mechanisms for automatic plan renewals, and it gives significant additional discretion to the minister and the NDIA. These are substantial reforms, and, for many Australians living with a disability, they are deeply confronting.

One of the areas causing significant anxiety is the proposed change around 'reasonable and necessary supports'. The bill allows for maximum funding amounts, maximum support intensity and even maximum worker-to-participant ratios to be set through determinations. For government, that may sound like administrative efficiency, but for families it can sound like rationing. For a parent of a child with profound needs, it creates fear that supports will increasingly be driven by budget settings rather than individual circumstances. For people like the Melmeth family, they know this fear all too well. In October last year, I rose in this place to raise serious issues about the treatment of the Melmeth family, a family doing incredible work to give their severely disabled son Harry the best life possible, by the NDIA. Harry's story highlighted the systemic failings of the NDIS, showing how its processes can undermine the very people it is meant to serve. In my speech at the time, I shared these words from Marie, his mother:

It is clear in Harry's medical documentation that his disabilities are life-limiting, but instead of spending time and making memories with our family, I must waste my time fighting this David and Goliath battle that consumes and controls my life.

Harry passed away in January this year, an unthinkable loss for his family. Not only did the Melmeth family have to deal with the profound pain of losing a child, but they also had to experience the pain of a system that continued to let them and their boy down. The facts of this case are a shocking indictment of the NDIS, where pleas for help are met with silence or worse, silence from a minister having twice raised the concerns of the Melmeth family with no response whatsoever. We should acknowledge cases like these honestly and respectfully when considering reforms.

These proposed changes are already causing significant anxiety for people with disability and their families because the government has not clearly defined how these powers will operate in practice. That uncertainty matters because people living with disability already live with enough uncertainty. Another area of concern is the proposal allowing the minister to reduce funding across groups of supports through legislative instruments. While the bill states the minister must consider participant safety, many Australians will worry about the precedent being created. People want assurance that the supports they rely on will not simply become a budget balancing exercise.

Similarly, the changes to reassessments and eligibility tests raise understandable concerns. The bill proposes a far tighter framework for unscheduled plan reassessments, limiting them to situations involving significant and ongoing changes in circumstances. I understand why the government is doing this. There are around 12,000 unscheduled reassessments every month, and these have contributed significantly to plan inflation. But we must also remember that disability is not static. Life changes. Carers age, housing arrangements collapse, mental health deteriorates, children grow, medical conditions worsen unexpectedly and, in regional Australia, service availability can change overnight. We must ensure the system retains enough humanity and flexibility to respond when people genuinely need help.

There is also concern about the proposed changes to the definition of permanence. The bill seeks to ensure that all appropriate treatment options have been explored before access to the NDIS is granted. Again, there is logic behind that principle. The NDIS was never intended to replace every part of the health system, but Australians with disabilities should not feel pressured into treatments they do not want and should not fear losing support because the bureaucrats determine they have not done enough to pursue improvement. These are deeply personal decisions, and they must be approached with compassion, common sense and respect for every individual autonomy.

I also note concerns regarding the broad transitional rule making powers in the bill, including what has been described as a Henry VIII clause, allowing rules to effectively alter the operation of primary legislation. That is extraordinarily significant power, and parliament should always be cautious about handing over broad authority with limited scrutiny, particularly in legislation that affects vulnerable Australians.

Within my own electorate, I've been contacted by constituents working within the sector who, though initially strongly supporting proposed reforms to the NDIS and the implementation of the Thriving Kids program, now after completing the expression of interest process and reviewing the draft program specifications have serious concerns that in practice the implementation of reforms do not align with the stated aims. Nikki and Laura constituents working as speech pathologists in Maitland shared with me their concerns about the reforms. They say:

One of the stated aims is to support children where they live, learn and play by building the capability of the adults around them. Yet the current model appears to exclude early childhood educators from accessing meaningful therapeutic education and support.

This is deeply concerning.

Early childhood educators are among the adults best placed to positively influence a child's development through daily interactions.

If we are genuinely committed to building capacity where children learn and play, why are these key adults being excluded?

I am also concerned about access pathways for children who require targeted therapeutic intervention.

Who determines when a child needs therapy?

What developmental expertise will referrers hold?

What happens when progress is slower than expected?

Child development is not linear.

Rigid, short-term block models may work for some children, but they will not meet the needs of all.

There is also the very real issue of workforce capacity.

Australian Early Development Census data show increasing developmental vulnerability among children entering school, including communication-related domains. At the same time, speech pathology access was already stretched before COVID, particularly in regional areas.

The likely outcome is predictable: increased demand, reduced provider access and families waiting longer for support.

I am particularly concerned by the apparent intent to preference NGO and community providers while limiting access to experienced private providers except in exceptional circumstances.

Many highly experienced paediatric clinicians now work in private practice.

Excluding this workforce does not strengthen the system. It weakens it.

The longer-term implications concern me greatly.

We know unmet developmental and communication needs do not simply disappear. They often emerge later as school disengagement, behavioural distress, mental health challenges, family burnout, and greater reliance on more intensive and expensive systems of support.

This risks becoming a cost shift rather than true reform, moving pressure from the NDIS onto families, schools, health systems and communities.

I genuinely support reform that improves outcomes for children. But reforms must be built on developmental science, workforce reality, and practical implementation, not assumptions about where expertise currently sits …

Children only get one early childhood.

We cannot afford to get this wrong.

Alison, who is another speech pathologist that lives in my electorate, has raised her serious concerns. She says:

Children who would have got NDIS last year are now getting knocked back by NDIS with no plans to direct them into the Thriving Kids program, which as we know they are still trying to plan.

I talked to one provider coordinator who said they haven't been given any different criteria for their submissions on behalf of applicants to the NDIS but they are seeing more children refused.

They are also not keeping any sort of a list of possible eligibility for Thriving Kids (it wouldn't be hard for NDIS to do this or to ask providers to do this, to create a data base for those previously requesting assistance to receive a personalised contact from NDIS when Thriving Kids is due to be launched with instructions to help them access) and have in fact been told they will find out about Thriving Kids along with the rest of us, when it is in the Media.

That is so disrespectful to everyone, the families, the provider workers, everyone! It shows the organisations contempt for helping families with kids who are struggling to develop skills.

With them refusing kids entry without a possible alternative program to put them into immediately, they are creating a group of children who will probably remain in a gap between services or will never receive services and create a group of disadvantaged children for some time.

None of this means reform should not occur. Reform is necessary. The scheme must be sustainable. If costs continue to grow unchecked, future governments will face impossible choices. And, if fraud and waste continue to undermine confidence, the social licence that underpins the NDIS will weaken. But sustainability cannot simply mean reducing expenditure. True sustainability also means maintaining trust that genuine participants will be treated fairly, that vulnerable Australians will not be abandoned, that the system will remain centred on people rather than bureaucracy and that governments are targeting the real causes of waste and exploitation, not simply making it harder for vulnerable people to access support.

Australians with disabilities should never be made to feel like they are the problem. The overwhelming majority of participants are honest people trying to live their lives with dignity. The overwhelming majority of carers are doing extraordinary work under immense pressure, and many providers are deeply committed people that deliver essential support in difficult circumstances. They deserve a system that supports them and protects them from those who seek to exploit the scheme for profit. That is why many Australians will be looking closely at whether this bill genuinely cracks down on organised fraud and criminal behaviour or whether much of the burden of reform instead falls on participants and families already struggling to navigate the system. As legislators, we have a responsibility to get this balance right to protect taxpayers' money, to protect the integrity of the scheme and, also, to protect the people that the scheme was created to serve.

See this speech in context