Submission 2665
Submission Regarding Proposed NDIS Reforms
To whom it may concern,
I am writing as both a parent carer and as someone living with disability myself, entirely self supported throughout my life.
Despite living with a lifelong debilitating anxiety disorder, I have never applied for disability support for myself because mental health conditions are so often minimised, misunderstood or not considered “serious enough” unless they are visibly catastrophic.
Yet my condition has absolutely been life changing.
There have been periods of my life where I have been trapped in bed for weeks in a state of severe panic, questioning my existence and struggling simply to function. At the same time, I continued trying to survive, work, parent and appear “capable” to the outside world because invisible disabilities are judged very differently to physical ones.
I have worked extraordinarily hard on my mental health over many years and feel deeply passionate about advocating for others living with invisible disability, particularly those whose suffering is dismissed because they do not fit society’s narrow understanding of what disability looks like.
Before becoming a full-time carer, I had a thriving professional career. I hold a degree in Environmental Science with a background in law. I worked for the South Australian Government writing management plans for protected areas, mapping with Geographic Information Systems and preparing Commonwealth funding applications for land acquisition and conservation projects. I am published and genuinely loved my work.
Even while managing my own disability, I consistently performed at a very high level despite assumptions being made about my capacity because of mental illness.
Eventually, I had to leave my career to care for my daughter full time.
We are now a one-income family trying to survive financially while navigating disability, burnout and chronic uncertainty about the future. We struggle with mortgage pressures, the loss of my career, the long-term loss of my superannuation and the financial insecurity that comes from sacrificing employment to provide unpaid care.
At the same time, we often fall only a few dollars over the means-testing threshold for Carer Payment, leaving families like ours carrying the responsibilities of full-time disability support without adequate recognition or assistance.
My husband cannot simply pursue higher-paying or more demanding roles because caring responsibilities do not stop when work ends. Life at home is already intense, emotionally demanding and unpredictable.
Submission 2665
My daughter is autistic and also experiences severe panic disorder, depression and ARFID.
At just 10 years old, she experienced a catastrophic mental health breakdown.
Ten years old.
Not because she lacked love, advocacy or support at home, but because the education system fundamentally failed to understand autism, panic disorder and disability. Teachers and wellbeing staff believed they knew what was best for her while completely misunderstanding what she was experiencing internally.
Children can break.
Adults can break.
The common narrative of “facing your fears” does not apply neatly to autistic children experiencing severe nervous system dysregulation and panic. My daughter does not experience the world the way neurotypical people do. She is still trying to understand what society expects from her while simultaneously feeling excluded from it.
During panic attacks she was told things like “we all get anxious” and placed on timers to calm down.
No, we do not all experience anxiety like this.
There is a profound difference between ordinary nerves and a disabling panic disorder that leaves a child vomiting, unable to communicate, unable to think clearly and unable to feel safe.
The result of this misunderstanding was devastating. lost confidence, trust, independence and her sense of safety around education and adults outside our immediate family.
Today, at 15 years old, she still requires extensive daily support.
I am not simply her mother anymore.
I am her home school teacher, therapist, communicator, emotional regulator, advocate, support worker and full-time carer. I am effectively on call every hour of the day because she cannot function independently without significant reassurance, guidance and practical support.
Most days involve supporting her to eat due to ARFID and fear surrounding food textures, taste and familiarity. I monitor supplements because nutritional intake is a constant concern. I encourage eating, emotional regulation, communication, routines and participation in everyday life.
Submission 2665
At an age where many teenagers are independently socialising with friends, my daughter often struggles to prepare a simple meal or even remove a yoghurt from the fridge without support due to anxiety, overwhelm and executive functioning difficulties.
This goes far beyond ordinary parental responsibility.
I have not had a proper break since she was born because she cannot sleep anywhere except her own bedroom.
This is not temporary. This is lifelong.
I also want to acknowledge how profoundly grateful I am for the support the NDIS has provided my daughter and our family. Without the NDIS, many of the therapies and supports that have genuinely changed her life would have been financially out of reach. We have never sought excessive funding and I manage my daughter’s NDIS budget carefully and responsibly. In fact, I have often reduced or declined supports when I did not believe they were delivering meaningful outcomes. The NDIS has helped my daughter rebuild confidence, develop skills and reconnect with her community, and for that I will always be grateful.
What concerns me deeply is that the current conversation surrounding the NDIS increasingly frames disabled people and families as the problem, while many of the systemic issues driving unsustainable costs are ignored.
The NDIS pricing structure has dramatically inflated the cost of therapies and supports that were once far more affordable for ordinary families.
Occupational Therapy, Psychology and support work pricing have escalated to extraordinary levels under the current model because providers understandably charge up to the maximum rates permitted by the scheme. Families are now seeing charges of hundreds of dollars for short therapy sessions combined with administrative notes.
Meanwhile, inexperienced support workers can earn substantial hourly rates while parents providing around-the-clock complex care receive little recognition, little financial security and minimal long-term protection for their own wellbeing and future.
Families are saving the government extraordinary amounts of money through unpaid labour every single day.
Yet instead of meaningful reform focused on provider accountability and pricing structures, disabled people themselves are increasingly blamed for the scheme’s sustainability challenges.
At the same time, the principles the NDIS was founded upon, particularly “choice and control,” are being steadily eroded.
Supports that genuinely improve quality of life and community participation, including
Submission 2665
equine therapy, art and music-based supports, are increasingly treated as optional luxuries despite their profound impact on mental health, emotional regulation and social connection.
Horse riding has been the only consistent activity that has helped my daughter reconnect with the world around her. It provides confidence, emotional regulation, communication, movement, routine and safe community engagement.
Without appropriate supports to engage in activities like this, many autistic children and adults will become increasingly isolated and unwell.
I am also deeply concerned by the growing public rhetoric surrounding autism and the NDIS.
Disabled children are increasingly scrutinised and blamed because of rising scheme costs, while families already living under enormous pressure are made to feel guilty for seeking support.
People say things like “everyone is a little bit on the spectrum.”
No.
If you know one autistic person, you know one autistic person. Autism presents differently in every individual, and impairment fluctuates depending on environment, stress, trauma, sensory load and support availability.
The suggestion that autism should somehow be ranked according to whether a person appears “disabled enough” is frightening and deeply harmful.
The NDIS was created to support dignity, participation, equality and choice for disabled Australians.
I respectfully ask that the proposed reforms do not undermine those principles by shifting the focus away from the individual needs of participants and their families, and by reducing the flexibility that allows people with disability to access the supports that genuinely improve their lives.
The NDIS has changed my daughter’s life for the better.
That is why I am making this submission.
I understand the need to ensure the NDIS remains sustainable for future generations. However, I am concerned that some of the proposed reforms risk shifting the focus away from the people the scheme was created to support.
Invisible disabilities are real.
Autism is lifelong.
Submission 2665
Carer burnout is real.
And families like ours are already carrying more than most people could imagine.
My daughter deserves the opportunity to participate in her community, build meaningful relationships and live a life of dignity and purpose.
The NDIS has helped make that possible.
I respectfully ask the Committee to ensure future reforms continue to recognise the complexity of disability, preserve meaningful choice and control, and support the individual needs of participants and their families.
Most importantly, I ask that reforms do not unintentionally take away the opportunities that have helped my daughter reconnect with her community, build confidence and participate more fully in life.
Thank you for considering my submission.