Submission to the Senate Community Affairs Legislation Committee
inquiry into: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted By:
date: 27 May 2026
My name is redacted. I am writing as both an NDIS participant and the mother and nominee of two children with profound disability and highly complex support needs.
I oppose many aspects of the proposed legislation due to the severe and dangerous impact it will have on families like mine.
I understand the importance of ensuring the NDIS remains financially sustainable and protected from misuse. However, reforms must not undermine the safety, dignity and human rights of participants with genuine and complex support needs.
My family lives with multiple layers of disability, including autism, hypermobile Ehlers-Danlos syndrome, POTS, cognitive and functional impairments, dysphagia, profound mobility limitations and complex medical risks. Both of my children require continuous 1:1 24/7 supervision and support across all settings due to significant safeguarding concerns, inability to safely identify or respond to risks independently, physical disability, cognitive impairment, and complex behavioural and medical needs.
Both of my children experience extreme functional impairment and are unable to safely self-manage within the community, requiring ongoing direct supervision for safety and participation in daily life. Both have autism, hypermobile Ehlers-Danlos syndrome and POTS, resulting in substantial impacts on mobility, fatigue, autonomic functioning, injury risk and overall independence. My son is additionally a wheelchair user due to his physical disability, as I am myself, creating further complexity and need for significant supports.
Submission 1266
I myself live with profound physical disability, autism, hypermobile Ehlers-Danlos syndrome, POTS and complex chronic illness. Despite this, I remain the primary unpaid carer within our family due to the absence of any informal support network. I am already experiencing severe burnout from years of providing unsafe and unsustainable levels of unpaid care while attempting to maintain safety within a family with extraordinarily high support needs.
We have no informal supports whatsoever. There is no extended family, respite network or unpaid carers available to absorb further reductions in support.
The proposed legislation appears to rely heavily on assumptions that families will absorb increasing levels of care when supports are reduced or restricted. For families like mine, this is neither sustainable nor safe. It transfers risk from government systems directly onto disabled people, siblings, ageing parents and exhausted carers who are already functioning beyond capacity. It also risks placing further pressure on the healthcare system and hospitals when reductions to reasonable and necessary supports result in dangerous outcomes.
Any further reduction in supports places not only myself and my children at risk, but also my husband’s ability to remain employed and therefore our family’s entire financial stability. We are already living under enormous strain attempting to maintain safety, housing stability and access to essential care. If support levels continue to reduce, there is a very real risk of worsening physical and mental health outcomes, loss of workforce participation and complete family breakdown.
I am deeply concerned about the expansion of legislative powers while accountability and review protections appear weakened. My own experience with the current NDIS system has already involved:
- repeated failures of evidence handling
- lost submissions
- lack of procedural fairness
- safeguarding concerns being minimised
- significant delays in urgent safeguarding matters being addressed, or concerns being ignored entirely
- inability to access timely review processes
Submission 1266
• complaints systems failing to appropriately investigate concerns • evidence repeatedly disappearing from NDIA systems despite multiple confirmed submissions • review requests not being properly registered within the system • decisions appearing inconsistent with extensive clinical evidence • severe distress caused through the complaints and review process itself
This has occurred even under the current legislative framework and existing review protections.
I am particularly concerned by proposals which appear to reduce practical accountability and transparency while simultaneously increasing administrative powers and reducing meaningful oversight. Families like mine are already struggling to safely navigate the existing system despite extensive evidence, advocacy and formal safeguards theoretically being available.
That is an extremely frightening reality for disabled Australians.
I am also deeply concerned by increasing proposals around automation, accelerated administrative decision-making and reduction of review pathways. Many disabled people and families are already struggling to navigate highly complex systems while under immense physical, cognitive, emotional and financial strain. Expanding automated or poorly accountable decision-making processes risks repeating harms previously seen in large-scale automated government decision making systems such as Robodebt, where administrative systems operated in ways that caused profound harm before meaningful accountability occurred.
Disabled people should not have to fear that essential supports required for safety and survival can be reduced, delayed or removed through non-transparent administrative systems that are difficult or, in some cases, impossible to challenge.
I am also extremely concerned by the increasing emphasis on restricting supports such as community access and supervision ratios under the language of “sustainability.”
For people with significant physical disability, cognitive impairment and complex medical needs, community access supports are not optional lifestyle supports or recreational extras. They are the only reason many disabled people can safely leave their homes at all.
Submission 1266
Without appropriate community support:
- many disabled people will become effectively trapped inside their homes
- access to medical care, therapy, education and social participation will significantly reduce
- isolation and mental health deterioration will increase
- carers will be forced to absorb unsafe levels of physical care and supervision
- people with physical disabilities will lose access to basic participation in society
For my own family, reductions to community support funding would not simply reduce social outings. It would fundamentally reduce our ability to safely access the outside world, participate in the community, attend appointments, maintain wellbeing and preserve even minimal quality of life.
Similarly, reductions to supervision ratios place people like my children at direct risk of harm. For my family, 1:1 supports are not preferences. They are safety-critical supports required to prevent injury, choking risk, wandering risk, medical deterioration and complete family burnout.
Without appropriate support:
- participants become unsafe
- carers burn out
- hospitalisation risk increases
- family breakdown increases
- long-term system costs increase
I believe these reforms risk violating the human rights of disabled Australians by reducing autonomy, safety, access to community participation and procedural fairness while increasing state control over essential supports.
The NDIS absolutely requires integrity, sustainability and appropriate safeguards. However, sustainability cannot come at the expense of the safety, dignity and human rights of disabled people and their families.
I strongly urge the Committee to:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1266
• preserve robust review and appeal rights • ensure strong independent oversight and accountability • protect access to individualised supports based on functional need and safeguarding risk • prevent overreliance on unpaid family care • protect community access supports for people with physical and cognitive disability • ensure disabled people and carers are meaningfully consulted before major structural changes occur • reject reforms that reduce transparency and procedural fairness • ensure automation and administrative processes cannot override procedural fairness and human rights protections
i have also found it deeply upsetting that reforms of this magnitude appear to have been developed with very limited genuine consultation with the disability community, despite disabled people and carers being those who will carry the direct consequences of these changes every day of their lives.
it has been particularly distressing to see such significant proposed legislative changes affecting fundamental supports, rights, safeguards and review processes progress with what appears to be an extremely limited consultation timeframe. The Senate submission period itself has been only approximately two weeks, despite the complexity and seriousness of the proposed reforms. This is especially concerning given that consultation periods for major legislative reform are often substantially longer.
For many disabled people and carers, preparing a submission is not a simple task. Our community is disproportionately impacted by fatigue, cognitive overload, communication disability, illness, medical appointments, caring responsibilities and limited capacity. Families like mine are already functioning in survival mode while managing profound disability, safeguarding concerns and complex support systems. Extremely short consultation periods create additional barriers that risk excluding the very voices most affected by these reforms.
Meaningful consultation cannot occur if disabled people and carers are not given realistic time, accessibility and capacity to properly understand, process and respond to proposed changes that may fundamentally alter their safety, autonomy and future wellbeing.
Submission 1266
Families like mine are already surviving at the edge of collapse under the current system.
These proposed changes risk pushing many beyond that point.
the true human cost of these reforms will not appear in budget papers. it will appear in exhastued caresrs, isolatd disabld peopls, worsning halth, famly brkadown, lss f employmnt, incrased hospitlisaton nd vulnrabl peple bcmng trappds insde unsfe situations wth nwherlsl t trn.
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thnk yf crsidring mysubmssion.