Personal Submission to the Senate Inquiry into National
Disability Insurance Scheme Amendment (Securing the NDIS
for Future Generations) Bill 2026
Why I Am Making This Submission
I am making this submission in a personal capacity.
I graduated as a Speech Pathologist in 1994 and, largely by accident, found my first
job in the disability sector at The Spastic Centre, now known as Cerebral Palsy Alliance. At the time, disability was not considered an attractive career path. Funding was
scarce. Salaries were low. Services were stretched beyond capacity. Many talented
professionals chose other sectors.
I stayed because I loved the work. I loved my clients, I loved their families. I had the
best, most clever, most innovative – on – the – smell – of – an – oil- rag colleagues
that you could ever meet.
Over the next three decades I built my career alongside Australians with disability and
their families. I studied, researched, published, attended conferences, presented at conferences, led teams, advised governments, supported providers and worked across
both government and non-government settings.
Most importantly, I have spent more than thirty years walking alongside people with
disability and the families who love them. That experience is why I feel compelled to
make this submission.
I am concerned that much of the current discussion about the NDIS has forgotten
why the scheme existed in the first place.
I Remember What Came Before
I remember the disability system before the NDIS.
I remember children who could not access communication devices because there was
no funding available. Families would spend months, and sometimes years, applying to
multiple charities in the hope of raising enough money for equipment that should have been considered essential.
I remember waiting lists. Long waiting lists. Waiting lists that stretched for months
and sometimes years. I remember families being told there was simply no service
available.
I remember people being forced to accept whatever service happened to exist because
choice and control were concepts that did not apply to disability support.
If an appropriate service did not exist, families either paid privately or went without.
Many simply went without.
I also remember the institutions. I worked in some of them.
The staff were often caring people doing their best under impossible circumstances,
but there was never enough funding, never enough resources and never enough
support.
Many people lived lives focused on survival rather than participation.
People rarely left the facility. Community life was limited. Opportunity was limited.
Expectation was limited. Disabled Aussies were invisible to the general population.
I remember people having all of their teeth removed because ongoing dentaltreatment was considered too difficult or too expensive.
I remember one person dying after becoming so severely constipated that they were
vomiting faecal matter.
These are difficult memories. They are also important memories.
Because this is what disability support looked like when governments failed to invest
in people.
The Promise of the NDIS
The NDIS changed almost everything. For the first time in my career I saw a genuine national commitment to improving the
lives of Australians with disability.
Disabled Aussies were, for the first time – visible. At the beach. At the shops. At
concerts and movies and street markets.
The market responded. Providers emerged. Innovation flourished.
Assistive technology became accessible. Therapy became accessible. Support became
accessible. Families who had spent years fighting simply to be heard finally had some
ability to influence the supports they received.
Children gained access to equipment that previously would have required years of
fundraising. Adults gained opportunities to participate in their communities. People
obtained jobs that would previously have been out of reach. Parents returned to work.
People with disability became visible in everyday Australian life.
For the first time, many Australians began to understand that disability inclusion was
not simply about keeping people safe. It was about helping people live meaningful
and connected lives.
The People I Have Met Along the Way
Over thirty years I have met thousands of people whose lives have been shaped by
disability.
I have met parents who fought battles every single day on behalf of their children
while carrying levels of exhaustion that most people will never understand.
I have met children who found their voice through communication technology after
years of being unable to tell the world what they were thinking. I have met adults
who experienced genuine independence for the first time. I have met support workers who routinely put the needs of others ahead of their own. I have met therapists who
stayed in a difficult sector because they believed every person deserved theopportunity to reach their potential.
I have met small business owners who mortgaged homes, worked evenings and
weekends, and carried enormous personal risk because they wanted to create services
that did not previously exist.
The public conversation often speaks about participants, providers and workers as if
they are separate groups. In reality they are part of the same ecosystem.
When one part suffers, all parts suffer.
The Cracks Were Always There
It is important to acknowledge that the NDIS was never perfect. There were policy
gaps. There were weaknesses in regulation. There were opportunities for exploitation.
There were providers who behaved poorly. There were participants who misused
funding.
These problems should have been addressed.
However, many of the challenges now being used to justify significant reform are not
solely the result of participant behaviour or provider behaviour. They are also the
result of government decisions and administrative failures.
My experience working through the transition period exposed me to many of these
challenges firsthand. Concerns were raised repeatedly, too often they were ignored.
The Agency became increasingly resistant to feedback from the very people working
directly with participants and families.
Planning quality remained inconsistent. Training remained inconsistent. Systems remained inadequate. Participants routinely received plans that did not reflect their
actual needs. Families were provided with incorrect information.
Providers and families spent countless hours navigating avoidable reviews,reassessments and appeals. Resources that should have been spent supporting people
were instead spent correcting preventable mistakes. The cost of those failures has
been enormous in both emotional and financial terms.
How We Lost the Narrative
Something else happened over the life of the NDIS. The public narrative changed at the hands of a very effective government PR campaign.
The conversation shifted away from inclusion and opportunity and became dominated
by stories of fraud, waste and misuse. The NDIS became a public punching bag.
Today, I often avoid mentioning that I work within the NDIS system because I know
what frequently follows. A criticism, a joke, an assumption that everyone involved is
somehow benefiting from a broken scheme.
The reality is more complicated. Every large publicly funded system experiences some
level of misuse. That reality applies to Medicare, aged care, taxation and social security. Yet the public discussion surrounding the NDIS has created an impression
that fraud and waste are its defining features.
Lost within that conversation are the millions of ordinary moments that occur every
day because the scheme exists.
The child who can communicate. The young person who can attend school. The adult
who can leave the house. The family that can finally sleep through the night. The
person who can participate in community life.
These stories rarely make headlines.
Who Will Pay the Price?
The people who are now being asked to carry the burden of reform are not the people
who created the problems. The people who will pay the greatest price are Australians
with disability, their families, their carers. their support workers, their therapists, their
communities.
And the thousands of small businesses that have emerged to support them.
Many of these businesses are owned or led by women. Many were built by people
with direct lived experience of disability. Many exist because governments were unable
or unwilling to provide the services required.
These businesses accepted risk, they invested, they employed staff. They created local
services and they solved problems. Today many find themselves facing profound
uncertainty- not because they have failed but because governments are seeking to
regain control of a market they failed to steward effectively.
The View From Here
I support reform, I support accountability, I support efforts to ensure the long-term
sustainability of the scheme. What I do not support is reform that diminishes the rights of people with disability. I
do not support reform that reduces transparency, I do not support reform that limits
access to review. I do not support reform that concentrates power while reducing
safeguards.
I am particularly concerned by reforms that allow support categories and funding
access to be altered in ways that are difficult for participants and families tounderstand, predict or challenge.
I am concerned by increasing uncertainty for families already carrying extraordinary
burdens.
I am concerned by the growing distance between decision makers and the lived experience of people affected by those decisions.
Most of all, I am concerned that we are responding to failures of administration by
asking people with disability to carry the consequences.
What History Teaches Us
I am old enough in this sector to remember what came before the NDIS. Many of the
people making decisions about its future are not.
History matters.
The NDIS did not emerge by accident. It emerged because Australians recognised that
the previous system was failing. It emerged because families demanded something
better. It emerged because people with disability deserved something better.
The question before us is not whether the NDIS requires reform. It does.
The question is whether those reforms strengthen the original vision of inclusion,
participation and dignity, or whether they slowly erode it. The question is simply, are
we really prepared to send disabled Aussies back in time to live an invisible life.
Final Reflection
I have spent more than thirty years working alongside Australians with disability. I
have seen the worst of our disability system. I have seen the best of it.
I have seen what happens when support is absent. I have seen what becomes possible
when support is present. The decisions made through these reforms will shape the
lives of hundreds of thousands of Australians.
I ask the Committee to remember that behind every policy proposal, every budget
measure and every legislative amendment are real people. People with hopes. People with goals. People with families.
People whose lives will be directly affected by the decisions made in this place.
I remember what life looked like before the NDIS.
I do not want Australia to forget.
Thank you for your time.