Complex disability and risk of family breakdown (Family or carer experience)

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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1266

Submission to the Senate Community Affairs Legislation Committee

Inquiry into the:

National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Submitted by:

Date:

27 May 2026

My name is . 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. Page1

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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 Page2

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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. Page3

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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: Page4

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. Page5

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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

exhausted carers, isolated disabled people, worsening health, family breakdown, loss of

employment, increased hospitalisation and vulnerable people becoming trapped inside unsafe

situations with nowhere else to turn.

I ask the Committee to genuinely consider what these reforms mean for families already

carrying extraordinary levels of disability, risk and exhaustion with little to no remaining

capacity left to absorb further cuts, delays or failures.

Thank you for considering my submission.

Page6