National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1348
Submission to the Senate Standing Committees on Community AffairsInquiry into the National Disability Insurance Scheme Amendment.
My name is , and I am writing this submission as a full-time working mother and the primary carer of my 15-year-old son.
My son is non-verbal and profoundly neurodivergent. He currently receives NDIS funding for Speech Pathology, Occupational Therapy, Physiotherapy, and community access support. As he moves through phases in his life , we increase or reduce this support as needed so don’t spend what isnt needed.
My experience with the NDIS has often felt cold, deeply impersonal, and overwhelmed by excessive paperwork. Decisions are routinely made by bureaucrats who look at forms rather than the human being behind them.
Meanwhile, systemic fraud goes unchecked, allowing thieves and opportunists to strip away vital funding from vulnerable people who are simply striving for a meaningful life.
I am making this submission to ensure the Senate Committee understands the catastrophic, real-world impact this legislation will have on families like mine.
- The Reality of Profound Neurodivergence and the Necessity of Community Access.
People who have not lived with a profoundly neurodivergent person cannot conceive how difficult the simplest daily tasks are. A basic trip to a shop to buy an item can take over half an hour just to get through the front door. It can include high-anxiety squealing needing immense patience while enduring the stares of strangers.
Something as ordinary as a dentist appointment for example, involves endless practice runs, only for the entire effort to unravel, leaving us with no option but to pay thousands of dollars for full medical sedation or wait on public health waiting lists behind urgent care cases to access routine procedures.
Neurodivergence does not always include intellectual challenges. So the person may be very aware of all that is occuring around them bug unable to communicate their thoughts or feelings.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1348
Progress for my son requires:
Precise, exhaustive planning for every single micro-step.
Countless failures, immense patience, and significant financial expense in some instances.
Constant, unbroken repetition.
Without continuous practice, any small gains he makes are rapidly eroded, and we are forced back to square one.
Community access funding is not a luxury or a social perk; it is a critical and practical necessity. It allows my son to build trust with people other than me. It gives him the vital practice required to negotiate noisy shopping centres, sit in a café, wait in a line, be around strangers, and enter unfamiliar spaces without experiencing severe panic. We currently use i hours a week that may seem sma but is absolutely vital.
- Defending Community Access and Rejecting Unrealistic Expectations on Carers.
I am deeply concerned about amendments in this Bill that seek to narrow support definitions or shift greater burdens onto unpaid family carers.
I work full-time. I do this intentionally so I can pay off a mortgage and leave my son a home he can inherit, ensuring he has a roof over his head when I am gone. However, maintaining full-time employment is only possible because of community access support. Even with funding, our lives are exhausting. After my work hours and on my days off, we spend our time running these practice exercises just to widen his world—or to simply put a marker in the ground to stop his hard-won progress from slipping away.
We still experience catastrophic days that end in exhaustion, screaming, and self-harm, such as head-hitting, caused by his frustration and intense fear of entering a doctor’s office or a new shopping centre.
If this Bill reduces community access funding or assumes that I, as an aging parent, can fulfill this role indefinitely, the consequences will be devastating:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1348
Severe Isolation:
Without this support, the natural consequence for my son will be total isolation and confinement to our home. Or worse once I am gone.
Loss of Independence:
If all community interaction depends entirely on his connection to me, his future after I pass away is terrifying to contemplate.
Financial Ruin:
If I am forced to sacrifice my employment to fill the gaps left by funding cuts, we will be unable to pay the mortgage, directly risking his future housing security and increasing the threat of homelessness and early death for him. Why is this considered to be OK? Why is the life expectancy gap between able and Extra needs accepted?
- The Psychological Harm of Marginalisation
The Committee must understand that modifying “reasonable and necessary” criteria to restrict developmental and social supports will actively marginalise the most vulnerable people in our society. Stripping away community access will expose people like my son to a deeply isolated and psychologically harmful existence.
The NDIS was built to give people with significant disabilities the concept of “a life lived.” This Bill, in its current form, threatens to reverse that mission, reducing human beings to line items on a budget sheet and punishing participants for systemic issues they did not create.
Recommendations to the Committee.
I urge the Senate Committee to recommend the following changes and safeguards
Protect Community Access Funding:
Explicitly preserve funding for community access and capacity building for participants with profound neurodivergence and communication needs, recognising it as an essential tool to prevent lifelong institutionalisation and regression.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1348
Mandate Face-to-Face Planning: Replace the current, impersonal paper-driven process with mandatory face-to-face meetings between planners and participants. Decision-makers must visually verify that a participant exists and understand their real-world environment before making life-altering funding cuts.
Target Systemic Fraud, not vulnerable Participants:
Shift the legislative focus away from reducing participant supports and direct it entirely toward eliminating the fraudsters, thieves, and predatory providers who are actively sucking resources out of the scheme.
Account for Long-Term Carer Sustainability:
Ensure that assessment frameworks explicitly evaluate the employment status and long-term aging trajectory of primary carers, rather than assuming family members can provide round-the-clock support forever.
The questions that keep me awake at night are ‘what happens to him when he finishes school?’. Who will make sure he can live a meaningful life once I am not here to be his advocate?’
If this was a loved member of your family – a person who has a unique and beautiful personality that cannot speak for themselves – what life would you want for them?
Thank you for considering the lived reality of my family.