Submission 2461
Submission to the Senate Inquiry into the National
Disability Insurance Scheme Amendment (Securing
the NDIS for Future Generations) Bill 2026
REQUEST FOR ANONYMITY – PRIVACY CONCERS IN PROFESSIONAL WORK
AND PERSONAL LIFE. CONFIDENTIAL
I am the mother of a young woman with cerebral palsy. My daughter first accessed the NDIS in the second year after its introduction, at age 16 and it has literally been a lifesaver.
Prior to the NDIS, I provided almost all of her personal care myself. There was extremely limited community support available. When we attempted to access early personal care services, the experience was deeply distressing and had lasting impacts on my daughter’s trust in support workers. A worker made highly inappropriate comments including, “What if your mother died? You need someone else to do your care.” This caused significant emotional distress and long-term anxiety around receiving support.
In contrast, the NDIS has had a transformative impact on her life.
Education and “Accessing the Community” Supports
One of the most important supports funded through the NDIS was flexible assistance for “accessing the community” and study support during secondary school. During Years 11 and 12, my daughter required assistance with homework, essay writing, typing, and study tasks due to fatigue and physical limitations.
Without this support, I believe her education would have ended around Year 10.
We did not use agency staff. Instead, we engaged independent unregistered support workers, often university students or recent graduates. They understood academic content, technology, and the “language” of the subjects, communication needs, and were able to work effectively with her.
The same model continued through university and enabled her to complete tertiary education and become a qualified social worker.
This outcome reflects the intended purpose of the NDIS: enabling participation in education and employment.
Submission 2461
Cost-Effectiveness of Independent non registered Supports
This model was also highly cost-effective. Independent workers were often less than half the cost of agency-provided support, while achieving highly successful outcomes.
I also know that unemployment rates will soar with cuts to NDIS- most of the support workers we use currently wouldn’t be able to work in traditional 9-5 jobs.
Failure of Agency Workforce Models
Over many years, I attempted to engage agency support workers. In most cases:
- agencies did not respond at all, or
- attended initial meetings but failed to follow through, or
- later advised that no workers were available in our area. Had we relied solely on agencies, my daughter would have effectively received no support.
Families often use self-managed or flexible arrangements not by preference, but necessity.
Carer Burden
Although the NDIS provides essential support, I have continued to provide care seven days a week throughout my daughter’s life. I am now almost 67 years old.
I have only ever been able to work part-time due to caring responsibilities. My superannuation and financial security are limited, and I continue working due to ongoing necessity.
Family carers provide enormous unpaid labour that reduces government expenditure, yet often face long-term financial disadvantage and burnout. Cutting funds is only going to push costs to other areas of the healthcare and welfare systems.
Concerns Regarding Proposed Legislative Changes
I am concerned about reforms that may:
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restrict use of the best local easily accessible support personnel if they are not registered.
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narrow eligibility through diagnosis,
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or introduce requirements to exhaust “all treatments” before access. Diagnosis is not a reliable indicator of functional capacity. Disability is highly individual, even within the same condition.
Submission 2461
Requiring “all treatments” raises serious concerns:
- who defines what all treatments are?
- many treatments are inaccessible, unaffordable, or unsuitable,
- waiting lists and service shortages make compliance unrealistic.
Functional Capacity and Real-Life Participation
Functional assessments must reflect real-world participation, not theoretical ability.
The key question is whether a person can complete tasks:
- safely,
- consistently,
- repeatedly,
- efficiently,
- and within a timeframe that allows participation in daily life. A person may technically be able to complete tasks such as dressing or showering independently, but if this takes excessive time and energy, it may prevent them from leaving the house in time for work or study.
Energy Expenditure and Fatigue Impact (Employment Relevance)
A critical issue often not captured in assessments is the energy cost of performing tasks independently.
Even when a person can complete tasks without assistance, the physical effort required may lead to significant fatigue later in the day. This can result in:
- early exhaustion,
- inability to sustain employment hours,
- reduced capacity for study or participation,
- and increased recovery time after basic activities. For example, if significant energy is spent on morning self-care tasks, the individual may be too fatigued to attend work or maintain productivity later in the day. This has direct implications for employment sustainability and economic participation.
Fluctuating Disability
Disability is not static. Capacity varies depending on:
- pain,
- fatigue,
- sleep quality,
- illness,
- and daily physical condition.
Submission 2461
Short assessments do not always capture this variability.
Community Access and Inclusion
Accessing the community is essential for:
- education,
- employment,
- healthcare,
- social participation,
- and independence. Without these supports, exclusion and isolation increase significantly.
Social Narrative and Employment Barriers
Public discourse increasingly frames the NDIS as excessive cost. This contributes to stigma and reduces employment opportunities for disabled people.
Research indicates many employers still do not consider disabled applicants viable. This demonstrates the importance of ensuring policy does not reinforce discrimination.
My daughter is now a qualified professional because she received appropriate support. Without it, her opportunities would have been severely limited.
Conclusion
Reform should focus on reducing administrative inefficiency, bureaucracy, and poor decision-making, rather than restricting essential supports.
The NDIS must continue to enable participation in education, employment, and community life through flexible, person-centred support.
Recommendations
I respectfully request that the Committee ensure that any legislative changes:
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Preserve self-managed and flexible support options
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Protect access to “accessing the community”.
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Avoid rigid diagnosis-based exclusion criteria
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Ensure functional assessments reflect real-world participation and fatigue impacts
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Recognise energy expenditure and cumulative fatigue in assessment frameworks
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Do not require unrealistic “all treatments” prerequisites for access
Submission 2461
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Strengthen accountability of service providers and agencies for reliability and follow-through
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Ensure carers are recognised and supported, including ageing parent carers
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Maintain the core purpose of the NDIS as enabling social and economic participation.