Submission 1412
Submission to the Parliamentary Inquiry into the National Disability Insurance Scheme
Submitted by a grandparent of a participant
May 2025
Introduction
This submission concerns , my granddaughter, who was born in December 2010 with Cri du Chat syndrome — a deletion on the short arm of the fifth chromosome. The effects of this condition are highly variable. In ’s case, she has severe developmental delay, did not walk until she was approximately ten years old, and remains unstable on her feet. She uses a wheelchair for most outings and is nonverbal, relying on assistive technology, including eye-gaze communication systems, to express herself and engage with the world.
was fortunate to be born as the NDIS was being established. The supports she has received through the Scheme have been transformative — not only for herself, but for every member of her family and, as this submission will show, for the broader community.
's Story: NDIS Support in Practice
The NDIS has provided with the essential supports she needs to participate fully in life: a wheelchair for mobility, specialised harnesses for safe car travel, and high-technology communication devices. Funded personal care and community participation supports mean she can live within her loving family home and engage meaningfully with her community — attending school, socialising with friends, and taking part in activities appropriate to her age and interests.
This last point deserves emphasis. is currently fifteen years old and in Year 11. Throughout her primary and secondary education she has attended mainstream classrooms, enabling her to form genuine friendships with age-appropriate peers. Her participation in social activities — shopping, youth group, parties, and community events — depends on the presence of a support worker, ideally someone closer to her age than her parents. The NDIS has made this possible.
Without that support, ’s world would be confined. With it, she lives a rich, connected life.
The Ripple Effects of NDIS Support
A compelling feature of ’s story is the degree to which NDIS support has generated benefits well beyond the individual participant. The Inquiry is invited to consider these broader effects carefully when assessing the Scheme’s value and sustainability.
's brother
's brother, approximately two years her senior, has grown up alongside her disability with remarkable grace. Through daily life with and her carers, he has developed deep empathy and a genuine understanding of care needs. He is now studying to become a paramedic. His experiences at home have given him qualities — patience, attentiveness, a capacity to communicate with people who have complex needs — that will make him a more effective emergency health professional for the rest of his career. This outcome flows directly from the environment that NDIS support helped create.
Submission 1412
’s mother
’s mother is a qualified teacher with two masters degrees in education. At the time of ’s birth she was on a clear trajectory toward school leadership. In ’s early years, she stepped away from full-time work to provide care. When began school, her mother returned part-time and, in response to ’s communication needs, began developing specialised skills in Augmentative and Alternative Communication (AAC).
That expertise has grown into something well beyond ’s household. She has since contributed to university courses and teacher professional development programs in AAC — taining teachers and parents across the system to support children with complex communication needs. The NDIS supports that enabled ’s communication development also enabled her mother to pursue this additional study. The result is a multiplier effect: one participant’s supports have produced an educator who will improve outcomes for many children over many years.
Carers trained through ’s support
The same multiplier effect is visible in the carers that ’s mother has recruited and trained. In one notable instance, a student undertaking an education degree worked as a part-time carer for over three to four years. The AAC skills and hands-on experience she gained through that role made her an exceptional beginning teacher — highly regarded in her school and nominated for professional awards. The competencies she developed while supporting one child will benefit many students throughout her teaching career.
This is not an isolated example. ’s mother takes great care in selecting, training, and supporting carers. The skills those carers develop while supporting prepare them for broader professional roles. The NDIS investment in ’s care is, in effect, an investment in workforce capability.
’s father and the family unit
’s father is a tradesman with a deep love of the outdoors. When ’s diagnosis was first confirmed, one of his immediate fears was that the family might never be able to go camping again. Thanks in no small part to ’s mother’s determination — and to the practical supports the NDIS provides — that fear has not been realised. The family has continued to camp regularly, including at the motocross events in which ’s brother competes.
This matters in ways that go beyond recreation. A family that can continue to pursue shared activities together is a family that remains cohesive, functional, and resilient. The NDIS has helped ensure that ’s disability does not isolate or diminish her family. Each member of that family continues to contribute productively to society, in part because their needs as a unit have been met.
Concerns Regarding Proposed Changes to the NDIS
The personal and social value generated by ’s NDIS supports is possible only because those supports are genuinely tailored to her individual needs — across the physical, communicative, and social dimensions of her life. My central concern regarding proposed changes to the Scheme is that this tailored, person-centred character may be eroded.
’s situation illustrates why individual circumstances must remain the primary determinant of support. Her needs do not fit a standard template. The combination of mobility supports, assistive communication technology, and community participation funding that enables her to attend school, form friendships, and live at home within a loving family
Submission 1412
cannot be reduced to a generic package without real cost to her quality of life — and, as this submission has demonstrated, to the lives of those around her.
I understand and accept that the NDIS must be financially sustainable. That is a legitimate concern. However, sustainability cannot be achieved by denying participants the supports that address their genuine needs — particularly where meeting those needs, as in ’s case, generates substantial and measurable benefits for families, carers, and the broader community. A narrow accounting of costs and benefits that considers only the direct expenditure on a participant, without accounting for these flow-on effects, will systematically undervalue the Scheme.
Conclusion
is fifteen years old. She attends a mainstream school, has friends, and participates in
a range of age-appropriate social activities. She communicates using sophisticated assistive technology. She lives at home with her family. None of this would be possible without NDIS support.
Her story also illustrates something the Inquiry should weigh carefully: the NDIS is not simply an expenditure on individuals with disability. It is an investment that produces outcomes across families, communities, and the workforce. When support is well-matched to individual need, the returns extend far beyond the participant.
I respectfully urge the Inquiry to ensure that any reforms to the NDIS preserve the principle of genuine, individualised support — and that assessments of the Scheme’s value acknowledge the full scope of the benefits it generates.
End of submission