Submission 704 - Supplementary Submission
I am writing regarding the National Disability Insurance Scheme (Protecting the NDIS for Future Generations) Amendment Bill 2026 for the attention of the Secretariat. Although submissions have closed, I feel it is imperative to clarify misinformation provided by Sarah Hawke of the NDIA to the Senate Committee at the hearing on 11 June 2026.
My 13 year old daughter has a significant, life-long disability called Cri du Chat Syndrome. She has complex support needs and requires 1:1 assistance at all times for her safety and the safety of others. I am writing to highlight misinformation shared by Sarah Hawke from the NDIA yesterday, which appeared to alleviate the Chair’s and other Senators’ concerns about the issue of the parental responsibility threshold.
On Day 3 of the Senate Hearings, the Chair asked ‘So if they needed help getting to school they would get that help?’ to which Sarah Hawke replied ‘Correct’. This can be seen on the recording available on YouTube at 6hrs, 51minutes of Day 3. The Committee appeared reassured by this answer. My concern is that it is inconsistent with both my family’s direct experience and the decisions being made by NDIA staff in practice.
We have directly experienced the NDIA refusing to fund help getting to school in early 2025, a decision which caused significant harm to my daughter. We live regionally, 30 minutes from our local high-school. As my daughter was to commence high-school, we asked the NDIS for funding for a support worker to transport her to and from school daily, as she cannot access the bus like her same aged peers due to her high support needs. All other high-school aged children in our town travel to school by bus.
This was the NDIA planner’s justification for declining funding for transport to and from school: Transport full decline Justification: I have declined transport because it would be reasonable to expect that parents would need to provide transport assistance to children under the age of 18. Transport is a day-to-day living cost for which the NDIS would not be responsible for. It is reasonable to expect that your informal supports would assist you to get to and from community locations. Funding has been included in your plan to build her capacity and independence in the community over time. This does not meet Reasonable and Necessary Criteria Section 34.1e: Takes into account what is reasonable to expect families, carers, informal networks and the community to provide, of the NDIS Act 2013. You may also liaise with your school or another government system to organise transport to and from school. Although it is acknowledged that you may have difficulty with travelling to and from school, this is not the responsibility of the NDIS. Please also refer to the ‘Supports that are not NDIS supports’ list on the Would We Fund It page on the NDIS website.
Support workers for self-care and school drop offs is not the responsibility of the NDIS but rather the responsibility of parents. It is reasonable to expect that parents care for their child including when the child needs to attend school and when the child participates in community activities.
This decision was made despite the NDIA rules and support lists clearly stating that school transport can be funded. In the “What the NDIS will fund” document, it states
Submission 704 - Supplementary Submission
that the NDIS funds supports for transport for the purpose of participants attending school where participants cannot travel or use public transport independently. The planner told us that transporting a child to school is a parent’s responsibility and that the NDIS never funds school transport for people under 18, only those attending TAFE or university. Clearly, the published rules apply to children under the age of 18 as well.
I repeatedly shared these documents with the planner, who maintained that “parental responsibility is on the no list”. At no time did she consider the context of the disability related support my daughter required in comparison to her same-aged peers, who were all travelling to high school by bus and whose parents were not driving them 30 minutes each way to and from school every day. That is demonstrative of the typical parental responsibility expected of families with teenagers.
here was also no consideration given to our family circumstances, which involved having two younger children attending our local primary school, with all three children required to be at their respective schools by 9:00am, despite those schools being 30 minutes apart.
Prior to this plan being finalised, and again after it was finalised, I highlighted the gravity of the risks and harm associated with this incorrect decision. I also pointed out that, even if I appealed, the response timeframes meant the damage would already be done, as the decision was made within the week that high school commenced.
I have recently gone back and reread those concerns and can now say that every single harm I predicted occurred. It derailed my daughter’s transition to high school. She was forced to attend on substantially reduced hours. Her behaviours of concern escalated enormously. She ultimately had a term off school due to the damage done and had to transfer to a special school, removing choice and control regarding an appropriate educational setting. I was also forced out of the workforce for five months.
I am raising this for three reasons:
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The Chair and other Senators appeared very satisfied with this response, as though it indicated that every other witness had interpreted the legislation incorrectly.
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As has been raised by countless witnesses, the intent of policy is very often not interpreted and applied correctly by NDIA staff, and this is a prime example of that occurring in practice.
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Just as witnesses have clearly identified the foreseeable risks associated with this Bill, I identified the risks associated with this incorrect decision. I was ignored, and all of those harms came to pass. If the evidence of witnesses appearing before this Committee over the last three days is ignored in the same way, then the harms foreshadowed throughout the hearings and across the thousands of submissions will also come true. Our planner did not listen and did not mitigate the risk. The Committee has an opportunity to do better.
Submission 704 - Supplementary Submission
With the exception of my daughter’s diagnosis at three months of age, this decision, and the discrimination and advocacy that followed, was the most traumatic experience of my life.
Hearing Sarah Hawke unequivocally state that someone who needs help getting to school would receive that help was quite distressing for me on a personal level and has honestly kept me awake most of the night. However, I am willing to revisit that pain if it assists the Committee by providing clarity and real-world evidence of how these policies can be interpreted and applied in practice. There is a real reason the community is concerned about the parental responsibility section of the Bill, as families who are providing care above and beyond what is ‘typical’ are repeatedly told by NDIA staff that what we are doing is no more than anyone else, despite clear evidence to the contrary.
I am happy to discuss this further or provide written evidence of both the decision itself and the concerns I raised at the time.
Thank you for taking the time to read this.