To the Senate Community Affairs Legislation Committee,
Thank you for the opportunity to make a submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am writing as the parent and primary advocate of an adult son with significant and lifelong disability support needs. My son, Matthew, relies on the NDIS not as an optional extra, but as the foundation that allows him to live with dignity, safety, stability and as much independence as possible.
I want to begin by saying clearly that I do not oppose reform of the NDIS. The Scheme does need fixing in some areas. Fraud should be dealt with. Overcharging should be dealt with. Poor provider behaviour should be dealt with. Families like ours see the damage caused by poor systems every day.
But reform should fix the real problems — not unintentionally make life harder for the people already carrying the system in real life.
My concerns about this Bill are not ideological. They come from lived experience.
For more than a decade, Matthew’s supports were stable. We had never faced the kind of funding crisis we are now dealing with. Recently, however, a combination of changes under PACE, quarterly funding releases, provider billing practices and plan management failures created a situation where Matthew’s supports were suddenly at risk through absolutely no fault of his own.
Invoices were delayed and batched. Spending visibility became unclear. Warnings did not come when they should have. By the time we understood the full picture, support workers were worried about not being paid, critical supports were under pressure and we were scrambling to protect Matthew’s stability.
This happened despite the fact that Matthew’s disability had not changed.
His needs had not changed.
What changed was the system around him.
That experience has made me deeply worried about reforms that may increase reassessments, reduce flexibility, narrow supports, or place too much power into future rules that families cannot yet see or understand.
Because support needs do not disappear simply because systems become harder to access.
The pressure lands somewhere else.
It lands on families already exhausted, carers already stretched, providers trying to hold fragile arrangements together and, most importantly, on the person with disability whose quality of life is directly affected.
- Reassessments and Reviews I am deeply concerned about reassessments becoming harder, more frequent, or more focused on reducing costs than understanding functional need.
For people with lifelong and complex disability, repeatedly proving disability can feel exhausting and dehumanising. Families spend countless hours gathering reports, explaining needs repeatedly and trying to prove realities that are obvious in daily life.
For many families, reassessments are not just paperwork — they are periods of enormous anxiety.
We worry whether supports that took years to build could disappear because someone reviewing a file does not fully understand what daily life actually looks like.
There must be strong safeguards to ensure reassessments are fair, transparent, trauma informed and based on genuine functional need.
- Plan Flexibility One of my biggest concerns is reduced flexibility.
Flexibility is not a loophole. It is often the very thing that keeps people safe.
Real life does not run neatly to categories and quarters.
Staff leave.
People become sick.
Equipment breaks.
Housing arrangements fail.
Support workers resign.
Unexpected costs arise.
Transitions happen.
Under the previous annual funding model, natural fluctuations could smooth out over time. The move to quarterly funding under PACE has shown us how easily ordinary variations can suddenly become crises.
On paper, Matthew’s supports may have looked manageable.
In reality, delayed invoices and provider practices created a situation that nearly destabilised an otherwise successful support arrangement.
Rigid systems often look efficient administratively, but they can become unsafe in real life.
The Bill must protect genuine flexibility, particularly for people with high and complex support needs.
- Funded Supports and Prevention I worry deeply about supports becoming harder to justify over time.
Families know something policymakers sometimes miss: small supports often prevent major crises.
Consumables, continence supports, assistive technology, pressure care items, transfer equipment, protective bedding, skin care products and low-cost adaptive equipment are not luxuries.
They prevent injuries.
They prevent hospital visits.
They protect dignity.
They protect carers from physical injury and burnout.
When supports become harder to access, the need does not disappear. The cost simply shifts somewhere else — usually onto families, hospitals, crisis systems and exhausted carers.
Prevention is cheaper than crisis.
Families already know this because we live it.
- Home and Living Supports, SDA and Independence Matthew lives in Specialist Disability Accommodation.
We were promised a model of independence supported by accessible environments and appropriate technology. In reality, much of what was meant to create independence required months of chasing, advocacy and delay.
Basic accessibility features, building access systems and practical supports that should have been available at the beginning took far too long to implement.
This matters because policy often assumes that improved housing automatically reduces support needs.
But independence is not created by a building alone.
Independence happens when housing, accessibility, assistive technology and supports actually work together.
When systems fail, supports cannot simply be reduced safely.
Participants should never be penalised because providers, housing arrangements or infrastructure fail to deliver what was promised.
- Support Coordination and Navigation Families often carry an enormous invisible workload.
Appointments.
Providers.
Equipment.
Funding categories.
Housing issues.
Medical systems.
Staffing concerns.
Service breakdowns.
Reviews.
Reports.
Risk management.
Emergency problem-solving.
Support coordination is often what holds these moving parts together.
Without good coordination, much of this work simply falls onto families already carrying extraordinary responsibility.
The reality is that unpaid carers already save this system enormous amounts of money.
We do it because we love our family members — but there are limits to what families can absorb.
- Future Rule-Making Powers I am very concerned about how much of the impact of this Bill appears to rely on rules that will be created later.
Families are effectively being asked to trust future decisions without yet understanding what those changes may look like in daily life.
That uncertainty creates fear.
Future rules must include genuine consultation with people with disability, carers and
families before major changes are introduced — not after.
There must also be strong safeguards, transparency and review rights.
- Regional Reality We live in a regional area where provider choice is already limited.
When a provider fails, there are often very few alternatives.
Families cannot simply “shop around” in the way policy sometimes assumes.
Good workers are difficult to find and harder to keep.
Regional realities must be recognised in any reform.
What works on paper in metropolitan areas does not always work in practice elsewhere.
What I Ask the Committee to Consider
I respectfully ask the Committee to ensure that reforms:
- protect people with lifelong and complex disability needs;
- preserve genuine plan flexibility;
- avoid sudden or destabilising support reductions;
- recognise regional provider shortages;
- value prevention supports that avoid crisis;
- protect home and living arrangements, including SDA and SIL;
- strengthen safeguards around reassessments and reviews;
- limit broad rule-making powers without consultation;
- address fraud, overcharging and poor provider behaviour without punishing participants.
I support reform.
But reform done badly risks breaking the very things that keep people safe.
For families like ours, the NDIS is not simply a funding program.
It is the difference between stability and crisis.
Between dignity and dependence.
Between possibility and isolation.
The system does not fail in theory.
It fails in real people’s lives.
Please ensure any changes strengthen the Scheme rather than making already fragile lives harder to hold together.
Yours sincerely,