Submission 555
Submission to the Senate Community Affairs
Legislation Committee
National Disability Insurance Scheme Amendment (Securing the
NDIS for Future Generations) Bill 2026
Re: The lived reality and future vulnerability of
- Who I am and why I am writing My name is , and I am the mother, primary carer, advocate, and emotional support person for my 26-year-old daughter, , an NDIS participant living on the Gold Coast in Queensland.
I am writing this submission not only as a carer, but as a mother currently living with Stage 4 peritoneal cancer and receiving palliative care.
Every day, I carry two unbearable realities simultaneously:
- the grief and uncertainty that comes with a terminal diagnosis,
- and the overwhelming fear of what will happen to my daughter when I am no longer here to protect and care for her.
This Bill intensifies that fear profoundly.
At the very time my family should be focusing on stability, dignity, connection, and preparing for an unimaginably difficult future, we are instead facing growing uncertainty about whether my daughter’s already inadequate supports may be reduced further.
For families like ours, this is not political theory.
It is survival.
- About lives with permanent and lifelong disabilities, including:
- Intellectual Disability,
- Autism Spectrum Disorder Level 2 requiring substantial support,
- Cerebral Palsy,
- profound adaptive functioning impairments,
- severe executive functioning deficits,
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severe sensory sensitivities – IQ 50
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and extreme limitations across multiple areas of daily functioning. Her Functional Capacity Assessment found:
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Overall Disability score: 87 (Severe),
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Participation score: 92 (Extreme),
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Life Activities score: 100 (Extreme),
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Self-Care score: 90 (Extreme). Her Vineland-3 assessment placed her functioning below the 1st percentile across communication, socialisation, and daily living skills.
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cannot independently manage meals,
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cannot safely manage finances,
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cannot independently access the community,
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requires support with hygiene and toileting,
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struggles significantly with change and transitions,
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and relies heavily on familiar routines, familiar people, and structured support in order to feel safe and regulated.
She remains highly vulnerable socially, emotionally, and functionally.
Despite this, she has dreams and goals like every other young woman:
- to increase her independence,
- to build friendships,
- to participate in the community,
- and to eventually live independently with appropriate supports. The NDIS currently gives her some possibility of achieving those goals.
This Bill threatens to take that security away.
- The hidden reality of family carers My daughter’s “functioning” does not exist in isolation.
It is held together every day by enormous unpaid labour, emotional regulation support, advocacy, supervision, transport, planning, prompting, caregiving, and crisis prevention provided by family — primarily me.
Like many mothers of disabled adult children, I have spent years carrying responsibilities that most systems never fully see:
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- personal care support,
- emotional co-regulation,
- medication oversight,
- financial management,
- transport,
- appointment coordination,
- safety monitoring,
- behavioural support,
- advocacy,
- and the emotional burden of constant vigilance. I have recently made the decision to retire early because my daughter’s care needs on top of my diagnosis have become too significant to balance alongside employment.
Now, while living with terminal cancer and receiving palliative care, I continue to carry these responsibilities because there is no alternative.
What keeps me awake at night is not only my illness.
It is the fear that the supports keeping my daughter stable may be reduced while my own health declines.
The emotional toll of this cannot be overstated.
- The fear of what happens after my death One of the most painful realities for ageing and unwell carers is the knowledge that we may not always be here to protect our children.
For me, this is no longer hypothetical.
My diagnosis forces me to think constantly about what will happen to when I die.
Will she have enough support to remain safe? Will she become isolated? Will she lose access to community participation? Will future assessments fail to understand her needs because I am no longer present to explain them? Will she be forced into systems that prioritise cost management over humanity?
These questions sit heavily over our family every day.
The proposed reforms increase those fears significantly because they appear to move the system away from:
- individualised understanding,
- relational care,
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and long-term security, and toward:
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standardisation,
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discretionary funding reductions,
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and functional scoring systems detached from lived reality.
- Concerns regarding “functional capacity” I am deeply concerned about the proposed use of “functional capacity” assessments within this Bill.
My daughter only functions as well as she does because of the extensive supports surrounding her every single day.
If assessments ignore:
- environmental supports,
- sensory regulation,
- familiar caregivers,
- structured routines,
- communication supports,
- and the invisible labour of carers, then they create a dangerously inaccurate picture of disability.
stability is not evidence that she no longer needs support.
It is evidence that support is working.
Reducing supports because someone appears “stable” while heavily supported is like removing scaffolding from a building because it has not collapsed.
- Community participation is not optional The proposed cuts to social and community participation funding are particularly distressing.
For profoundly disabled participants like community access is not a luxury.
It is:
- emotional regulation,
- social connection,
- confidence-building,
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routine,
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skill development,
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mental wellbeing,
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and protection against isolation. Without support:
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she cannot safely navigate unfamiliar environments,
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cannot independently manage social interactions,
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and becomes overwhelmed and dysregulated. Removing or reducing these supports risks confining disabled people to their homes while simultaneously increasing pressure on already exhausted families.
As my own health declines, this becomes even more frightening.
- Concerns regarding automation and reduced review rights
I am deeply concerned about:
- reduced appeal pathways,
- increasing ministerial powers,
- and growing reliance on automated decision-making systems. My daughter cannot be reduced to an algorithm or standardised score.
Her presentation changes dramatically depending on:
- sensory overload,
- emotional safety,
- routine stability,
- support consistency,
- familiarity,
- and fatigue. No automated process can fully capture the complexity of her lived experience.
Families must retain:
- meaningful review rights,
- human oversight,
- procedural fairness,
- and access to independent appeals. Without these safeguards, profoundly vulnerable people risk being failed by systems that no longer truly see them.
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Recommendations I respectfully ask the Committee to urgently amend this Bill to:
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Protect participants with permanent and significant disabilities from blanket funding reductions.
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Ensure “functional capacity” assessments consider real-world functioning and the role of caregiver support, environmental scaffolding, and sensory regulation.
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Protect community participation funding for participants requiring high levels of support and supervision.
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Preserve strong review and appeal rights, including rights relating to automated decisions.
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Recognise the enormous contribution and vulnerability of ageing, ill, and palliative carers within the NDIS system.
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Ensure future reforms do not place additional burdens onto families already at breaking point.
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Include stronger protections for participants whose long-term wellbeing depends on stable support systems after the death of primary carers.
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Final statement I know that one day I will not be here.
What gives me peace, or takes it away, is whether I believe my daughter will remain safe, supported, included, and valued after I am gone.
Right now, this Bill does not give me peace.
It gives me fear.
Fear that my daughter’s supports will shrink while her needs remain lifelong. Fear that the invisible work carers do will continue to be ignored. Fear that disabled people with profound vulnerabilities will be assessed through systems that cannot truly understand them. Fear that families already carrying unbearable emotional loads will simply be expected to absorb more.
I ask this Committee to remember that behind every policy decision is a real person, a real family, and a future that matters.
Please ensure the NDIS remains a scheme grounded in dignity, humanity, stability, and genuine care for the people whose lives depend on it.
Submitted by:
Mother, Carer, and Advocate for