Submission to the Joint Standing Committee on the National Disability Insurance Scheme
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
I am writing as someone with lived experience navigating disability support systems within my family over many years, including both the pre-NDIS system and the NDIS.
Disability, illness and caring responsibilities have had a profound impact on my family across generations. Before the NDIS, my family dealt with older disability support systems that were often fragmented, underfunded and difficult to navigate.
My family has experienced significant loss and hardship as a result of disability and illness. My sister was seriously ill and passed away in 2008. Her illness and death had a lasting impact on our family and highlighted the challenges families face when navigating complex support systems during times of crisis.
More recently, my father has developed an aggressive and rapidly progressive form of Parkinson’s disease and is supported through the NDIS. Parkinson’s is an unpredictable condition that affects mobility, balance, speech, cognition, fatigue and a person’s ability to perform everyday activities. As his condition has progressed, his support needs have increased significantly and continue to change over time.
My mother has been his primary informal support and carer for many years. However, she is now disabled herself and can no longer safely provide the level of care and support she once could. As a result, our family is now managing multiple layers of disability, caring responsibilities and system navigation at the same time.
These experiences have shown me how heavily disability systems already rely on unpaid family care and how quickly families can reach breaking point when supports are delayed, reduced or denied. They have also shown me how dangerous gaps in support can become when both the disabled person and their primary carer have significant support needs of their own.
While I understand the importance of protecting the long-term sustainability of the NDIS and addressing fraud within the scheme, I am deeply concerned that several amendments in this Bill risk harming vulnerable participants and increasing pressure on families and carers like mine.
Restrictions on reassessments may place participants with progressive conditions at risk
I am deeply concerned about the proposed amendments in Schedule 1, Part 2, particularly the restrictions requiring “significant and ongoing” changes before reassessments can occur.
For people living with progressive neurological conditions such as Parkinson’s disease, support needs can change gradually, unpredictably and sometimes suddenly following illness, falls, medication changes, hospitalisation or cognitive decline.
These changes do not always fit neatly into administrative categories of “temporary” versus “ongoing”.
Families often recognise deterioration long before systems formally acknowledge it. Delays in reassessment can leave people without adequate support during critical periods and increase risks to both participants and carers.
The explanatory memorandum suggests some temporary or short-term changes may not justify reassessment. However, in reality, even short-term changes can create major safety risks, carer burnout, mental health deterioration and loss of independence.
In my family’s situation, delays or barriers to reassessment could have serious consequences. My father’s Parkinson’s disease is aggressive and rapidly progressive, meaning his support needs can increase significantly over relatively short periods of time. At the same time, my mother’s own disability now limits her ability to provide care and support. If formal supports do not keep pace with my father’s changing needs, both of them may be placed at risk. My father may be left without adequate assistance to remain safe and independent, while my mother may be forced to take on caring responsibilities beyond her physical capacity. Rather than protecting participants and families, restrictions on reassessment risk creating unsafe situations and increasing the likelihood of crisis, injury, hospitalisation and carer burnout.
I am concerned these changes prioritise administrative control and cost containment over participant wellbeing and safety.
The “direct impairment” requirement does not reflect the reality of disability
I am also deeply concerned about the proposal to restrict supports only to needs arising “directly” from impairments that met NDIS access requirements.
Disability does not exist in isolated categories. Many people experience multiple overlapping conditions that interact with one another and affect daily functioning in complex ways.
This is particularly relevant for progressive neurological conditions like Parkinson’s disease, where physical symptoms, cognitive impacts, mental health, fatigue, communication difficulties and other secondary conditions often interact together.
The proposed changes risk excluding legitimate support needs simply because they relate to secondary, interacting or comorbid conditions.
I am concerned this approach creates artificial divisions that do not reflect the lived reality of disability and will disproportionately harm people with complex or progressive conditions.
These changes risk increasing pressure on unpaid carers and families
My family’s experiences have shown me that when formal supports are reduced or difficult to access, the burden does not disappear — it shifts onto families.
This is especially difficult when multiple family members are disabled or unwell at the same time.
My father is an NDIS participant living with Parkinson’s disease, while my mother also lives with disability but is outside the NDIS system. Navigating multiple systems while managing caring responsibilities places enormous emotional, financial and physical pressure on families.
My mother has spent years supporting my father, but her own disability now limits what she is able to do safely. If supports are delayed, reduced or denied, there is often an assumption that family members will simply absorb the additional caring responsibilities. In reality, many families do not have the capacity to do this.
Many carers are already exhausted, ageing, grieving, financially strained or managing health conditions themselves.
The NDIS should not be designed around the assumption that unpaid family care will always fill gaps left by inadequate supports.
Financial sustainability should not come at the expense of participant safety
I understand the importance of ensuring the long-term sustainability of the NDIS. However, sustainability must not become a justification for reducing supports below what people genuinely need to live safely and with dignity.
The explanatory memorandum states that support funding may be reduced even below the actual cost of supports. This is deeply concerning.
In practice, inadequate funding often results in:
- increased family burnout,
- reduced independence,
- crisis-driven care,
- hospitalisation,
- poorer health outcomes,
- and greater pressure on health and aged care systems. The long-term costs of inadequate support are often far greater than the short-term savings achieved through funding reductions.
Recommendations
I urge the Committee to:
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Allow greater flexibility for reassessments during periods of instability or deterioration.
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Recognise the realities of progressive and fluctuating conditions such as Parkinson’s disease.
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Reconsider the “direct impairment” approach and recognise overlapping and interacting disabilities.
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Ensure participant safety and wellbeing are prioritised alongside financial sustainability.
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Recognise the enormous unpaid contribution already made by families and carers.
Conclusion
The NDIS has been life-changing for many Australians, including families like mine. However, these proposed changes risk making the system more rigid, less responsive and harder for vulnerable people to navigate.
My family’s experiences caring for a father with aggressive and rapidly progressive Parkinson’s disease, supporting a disabled mother, and navigating disability and illness across multiple generations have shown me how easily people can fall through gaps when systems become too restrictive or inflexible.
I am particularly concerned that these changes may place both my father and my mother at greater risk. As my father’s condition deteriorates and my mother’s own disability limits her ability to provide support, timely and adequate formal assistance becomes increasingly critical. When support systems fail to respond to changing circumstances, families are often expected to absorb the consequences, regardless of whether they have the capacity to do so.
My family has already experienced the impacts of serious illness, disability, caring responsibilities and loss. We know firsthand that when support is unavailable or delayed, the burden does not disappear—it falls on families who may already be struggling. I urge the Committee to ensure that efforts to improve the sustainability of the NDIS do not come at the expense of the safety, wellbeing and dignity of the people the scheme exists to support.
Thank you for considering my submission.