National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1054
Submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I write to express serious concern regarding aspects of the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
While reform and sustainability of the NDIS are important objectives, these proposed amendments risk undermining the foundational principles of the Scheme: individualised support, participant dignity, procedural fairness, and democratic accountability.
I write this submission as I have a 15-year-old son who has Down syndrome.
Down syndrome is a permanent disability, with life long impairment requiring permanent support to participate in society in a way that most people take for granted.
I am the mother of four children including my son with Down syndrome. My lived experience of motherhood has given me a deep understanding of care, nurture, patience, and the many invisible tasks that come with raising children. These are things that most mothers know instinctively and give freely, every day.
What is different is the additional care, support, supervision, and emotional labour required when parenting a young person with disability.
I can only speak from my own experience of parenting my son with Down syndrome.
At its heart, parenting him is the same as parenting my other children. It is grounded in love, encouragement, guidance, hope, and the desire to help him become the best version of himself that he can be.
But there is extra.
There is extra support. Extra supervision. Extra advocacy. Extra planning. Extra emotional energy. Extra time. Extra coordination. Extra worry about the future. Extra effort required for things many families take for granted.
There are additional appointments, additional therapies, additional communication with schools and providers, additional assistance with daily living tasks, and additional barriers to independence that require ongoing support and intervention.
That care is given freely and with love. But it is still additional.
It is therefore profoundly disturbing to see legislative changes framed in a way that suggests parents should simply absorb even more responsibility through reduced supports and narrowed definitions of what constitutes reasonable parental care.
Families like mine already provide substantial unpaid care and support every single day. The NDIS was never intended to replace parental love or responsibility. It exists because disability creates additional support needs beyond what families can reasonably sustain alone.
Reducing supports by redefining parental responsibility does not remove those.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1054
It simply transfers more pressure, exhaustion, and financial strain onto families who are already giving everything they have.
I write this submission to advocate for the individual supports that he requires to access and experience inclusion in his local community.
The proposed amendments to the NDIS are profoundly disturbing. My concerns relate particularly to:
expanded Ministerial powers;
the lack of parliamentary oversight and review mechanisms;
changes to the concept/definition of parental responsibility;
the reduction of individualised supports through broad administrative decisions; and
the real-world impacts these changes will have on families and participants.
Ministerial Powers and Democratic Accountability
The Bill proposes powers that would allow the Minister to make unilateral decisions affecting categories of support funding for participants across the Scheme, irrespective of individually assessed needs.
This represents an extraordinary concentration of executive power.
The provisions appear to permit decisions that can:
reduce or remove support categories;
override individualised assessments;
affect thousands of participants simultaneously; and
significantly alter participant supports,
all without:
individual reassessment;
parliamentary approval;
meaningful parliamentary disallowance;
independent oversight;
adequate review rights; or
sunset clauses limiting the duration of these powers.
There appears to be no effective mechanism for Parliament to review, amend, or reverse Ministerial determinations once made.
This is deeply concerning in a democratic society.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1054
The NDIS was established as an individualised, needs-based scheme. The proposed amendments shift decision-making away from individualized assessment and toward broad administrative control exercised by a single Minister.
This is not genuine reform.
It is the centralisation of unilateral administrative authority without sufficient checks and balances.
Such powers fail basic principles of sound administrative decision-making, including:
transparency;
procedural fairness;
proportionality;
evidence-based assessment; and
proper consideration of individual circumstances.
The absence of accountability mechanisms creates a serious risk that decisions affecting vulnerable Australians may be driven by budgetary pressures rather than participant need.
Impact on Families and Participants
The proposed changes to the definition and expectations of “parental responsibility” are profoundly concerning and somewhat offensive.
These changes appear designed to shift increasing responsibility for supports away from the Scheme and onto families, without acknowledging the extraordinary unpaid care already provided by parents and carers every day.
I am the parent of a 15-year-old son with Down syndrome.
Each day I assist him with the activities that many families take for granted:
getting up and dressed;
preparing meals and lunch;
prompting and supporting self-care tasks;
organising school requirements; and
transporting him to and from school because he cannot travel independently.
Unlike his siblings — including younger siblings — he cannot simply make his own way to school.
Like many families, I work full-time because financially I have no choice. I work from home and use what would otherwise be my lunch break to collect my son from school in the middle of the workday.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1054
That is the reality for many NDIS families.
One day each week, my son receives support from a care worker who picks him up from school and assists him to participate in the community. They go shopping together, practise money handling and budgeting skills, interact socially, and prepare meals together.
This support is not a luxury.
It is community participation, independence-building, and skill development.
Under the unilateral decision by the Minister this support will be halved.
From once a week to once a fortnight.
This reduction may appear administratively minor on paper. In reality, it represents a significant reduction in opportunities for independence, social inclusion, and practical life skill development for my son.
The suggestion that parents can simply “do more” is both offensive and disconnected from the reality families already live every day.
Families already do more.
They do more on a daily basis, more care, more support. The legislation risks formalising the assumption that unpaid family labour can continue to absorb reductions in funded support without consequence.
Scheme Sustainability and Fraud Prevention
The Government has repeatedly framed these reforms as necessary to ensure the sustainability of the NDIS.
However, concerns regarding sustainability should not result in supports being removed from vulnerable participants through broad Ministerial powers.
Public reporting and research have consistently suggested that NDIS expenditure is lost through fraud, exploitation, non-compliant providers, and poor regulatory oversight.
If sustainability is genuinely the objective, greater focus should instead be directed toward:
provider regulation;
fraud prevention;
auditing and compliance;
enforcement activity; and
administrative accountability within the Scheme.
Participants and families should not bear the burden of systemic failures in regulation and governance.
Recommendations
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1054
I respectfully urge the Committee to recommend:
stronger parliamentary oversight of Ministerial determinations;
parliamentary disallowance mechanisms;
mandatory independent review processes;
sunset clauses on extraordinary Ministerial powers;
preservation of individualised assessments and participant appeal rights;
meaningful consultation with participants and families; and
greater investment in fraud prevention and provider regulation rather than reductions to participant supports.
The NDIS exists to support some of the most vulnerable members of our community.
Reforms that weaken individualised support, reduce accountability, and centralise unchecked power risk undermining both public trust and the integrity of the Scheme itself.
The voices and lived experiences of participants and families must remain central to any reform process.
Thank you for considering this submission.
Should this submission be published I wish my name to be removed from publication.
Yours sincerely, A very concerned parent