National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2539
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
Good morning, I am the parent of a child with Level 3 Autism Spectrum Disorder. My child is non-verbal and requires support in all areas of daily living, including being doubly incontinent. I am making this submission because I have concerns that changes proposed in the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 will make it harder for families like mine to access and maintain the supports we rely on.
My child requires constant supervision and support. The level of care involved is often comparable to caring for a much younger child, despite their actual age, height, weight. Daily routines involve communication support, personal care, behavioural support, continence management, advocacy, appointments.
The impact on our family has been stressful to say the least. Like many parents of children with disabilities, I have experienced periods of severe burnout. The demands of caregiving are 24/7 with mental fatigue and often extend well beyond what is expected of parents of typically developing children. Sleep disruption, emotional exhaustion, financial pressure and navigating complex service systems are ongoing challenges.
The strain on my marriage has been significant. Much of our time and energy is directed towards meeting our child’s needs, leaving limited opportunities for rest, connection and maintaining our relationship. Families in our position need support systems that help preserve family stability, not additional uncertainty.
Social isolation is another major issue. Participation in community activities is often difficult due to our child’s support needs, communication barriers and behavioural challenges.
I support efforts to ensure the long-term sustainability of the NDIS. However, I am concerned that measures intended to reduce costs may unintentionally increase pressure on families already operating at their limits.
When funding is reduced, delayed or made more difficult to access, the burden does not disappear. Instead, it is transferred to parents, siblings and carers. In many cases, family members absorb additional caregiving responsibilities at significant personal, emotional and financial cost.
I ask the Committee to consider the following:
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Recognise the critical role that families and unpaid carers play in sustaining the lives of people with disability.
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Protect access to respite, support workers and capacity-building supports that reduce caregiver burnout.
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Consider the wellbeing of carers and family members when assessing support needs.
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Ensure that any changes to eligibility, planning or funding do not create additional administrative burdens for families already experiencing significant stress.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2539
- Maintain pathways for families to seek reviews when circumstances change or support needs increase.
For families like mine, appropriate supports help prevent crisis, preserve family relationships, reduce isolation and allow us to continue caring for our children at home. We are young and we have concerns we won’t be able to work due to the reduced support and we fall into depression and relaying on NDIS and Centrelink payments as we can not work and support the care for our child with ASD.
I ask the Committee to ensure that any reforms to the NDIS protect the rights, wellbeing and dignity of participants while also recognising the realities faced by families and carers.
Thank you for considering my submission.