Submission to the inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by:
Location: , Queensland
Relationship to participant: Husband and primary informal carer
To the Committee,
My name is , and I am the husband and primary informal carer of an NDIS participant, .
I am making this submission because I am concerned that changes to the NDIS could place even greater responsibility on family carers without properly considering whether that care is safe or sustainable.
requires support 24 hours a day, seven days a week. Someone needs to be physically present with her at all times.
Although her condition is variable, attacks can occur suddenly and without enough warning for us to safely plan around them. During an attack, she may be unable to protect herself, respond appropriately to danger or reliably call for help. We cannot take the risk of leaving her alone and hoping that an attack does not happen.
Because of this, I work from home so I can remain with her. This is not simply a personal preference or a convenient working arrangement. It is part of how we keep her safe.
The support receives through the NDIS allows me to have some limited time away from the direct caring role. However, much of that time is taken up by my employment. Funded support does not mean that I suddenly have large amounts of free time or that my caring
responsibilities disappear. It allows me to work, attend to essential responsibilities and maintain some ability to continue in the caring role over the long term.
I also have significant health issues of my own. My ability to provide this level of support cannot be assumed to remain unchanged indefinitely.
If my health declines further, will require additional funded support. That support will need to be provided by workers who have specialised training and a clear understanding of how to support her safely during an attack. It would not be appropriate to send an unfamiliar or untrained worker into that situation and expect them to manage it safely.
Any assessment of ’s needs must therefore consider more than what she may appear capable of doing on a relatively good day. It must consider the seriousness and unpredictability of her attacks, the need for someone to be physically present, the consequences if support is unavailable and the limits of my own health and caring capacity.
The NDIS must not assume that because a participant has a husband, wife or other family member, that person can provide unlimited support indefinitely.
Unpaid family care is not an endless resource. It depends on the carer’s own health, capacity, employment, sleep, age and ability to continue carrying the physical and emotional responsibility involved. Where a participant needs continuous supervision, even a small reduction in formal support can place a very large additional burden on the person providing unpaid care.
’s Specialist Disability Accommodation is also extremely important.
Our SDA home has been an excellent support in managing her attacks. It provides an environment that is much safer and more suitable for her disability needs than an ordinary rental property.
If we had to return to the private rental market, we would be unlikely to find a suitable property. Even finding an affordable rental would be difficult, and finding one that could safely accommodate ’s needs would be far more difficult.
SDA should not be viewed simply as housing. In our situation, it is part of the support structure that allows to remain safe, maintain some independence and continue living in the community.
Losing suitable housing would not reduce her disability support needs. It would make them harder and more expensive to manage. It would also increase the pressure on me as her carer.
I ask the Committee to ensure that any changes to the NDIS include proper consideration of the impact on unpaid carers.
In particular, I recommend that:
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The actual capacity, health and circumstances of informal carers be considered and documented when support needs are assessed.
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A spouse or family member should never be treated as an automatic replacement for funded support.
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Assessments of people with fluctuating conditions should consider their needs across time, including the frequency, seriousness and consequences of episodes, rather than relying mainly on what they can do during a short assessment or on a good day.
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Participants should be able to seek a timely reassessment when their needs change or when the capacity of their informal carer changes.
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Where a participant requires specialised support during medical or disability-related episodes, funding should recognise the need for workers with appropriate training.
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Decisions that may reduce essential supports should include meaningful human consideration of the participant’s individual circumstances and should not rely only on standardised or automated processes.
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SDA and other essential supports should be considered in terms of the safety, stability and long-term costs they prevent, rather than being viewed only as expenses.
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Any proposed reduction in support should include an assessment of what will happen to the participant and the unpaid carer if that support is removed.
I understand that the NDIS needs to remain sustainable. However, sustainability cannot be achieved by shifting more responsibility onto spouses and families who are already providing continuous unpaid care.
If formal support is reduced, ’s needs will not disappear. The responsibility will be transferred to me until I am no longer physically able to carry it. At that point, the consequences for both of us, and likely for the wider health and disability systems, would be much more serious.
I ask the Committee to recognise the essential role carers provide while also recognising that carers have limits. The NDIS should support arrangements that are safe, realistic and sustainable for both the participant and the person caring for them.
Thank you for considering my submission.
10 July, 2026