National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1667
To Whom It May Concern,
This is a submission to the government’s NDIS Inquiry.
I am the parent of a National Disability Insurance Scheme participant who has been enrolled since transitioning from the DSQ.
My child was born with a disability which was formally diagnosed whilst they were at Kindergarten.
• What does the NDIS mean for you right now?
As an IT professional for 30+ years I have occupied roles in the Education, Corporate and Government sectors, however, I have, over the course of the past 15+ years steadily downgraded my day-jobs to part time or lower-demand (i.e. lower paid) roles in order to gain the additional flexibility outside of my work-life required to care for my child.
Regardless of the support schemes (like the NDIS) available to my child, I still find it necessary to personally fill the gaps between these supports stretching myself mentally and physically way beyond the norm for a parent. The NDIS is essential to the health and well-being of not only my child, but of my own health and well-being and that of my family.
• How do you feel about the proposed changes to the NDIS Act?
To be informed that (as a result of the new Bill) the NDIA will have the power to implement arbitrary budget caps, rate cuts, support limits and other changes to components of participant plans (existing or future) without review by the participant (their advocate or primary care-giver) will likely result in catastrophic impacts on my child, myself and my family which could actually be fatal.
• Do you feel these changes have been explained clearly enough?
Although the changes have been explained, it doesn’t mean that I support them.
• What would these changes mean for you, your family, friends, carers, or community?
Any reduction in my child’s current support plan will likely result in catastrophic or fatal impacts on my child, myself, my family and possibly the community.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1667
• What would happen if your social and community supports were reduced or removed?
Without support allowing my child to live among society in a reasonably safe and social way, there would be a major impact on those around them; as they are unlikely to be able to safely navigate their local community with severe or possibly fatal results; not because they are a direct threat to others, but because they would not always be aware of the impacts they could have on others or the community. e.g. Road safety.
• What would happen if your capacity building supports were reduced or removed — or if you never had access to them in the first place?
Without capacity building supports my child has no chance of ever gaining the ability to operate or interact safely with the community, myself or my family and this would likely have severe if not fatal results.
One of the major changes proposed in this legislation relates to how the NDIA defines “permanence” in relation to disability.
One of the substantial impacts I have personally suffered since my child has been enrolled as an NDIS participant has been that I have had to expend an extraordinary amount of effort (not to mention taxpayer dollars for mandatory reports required under the scheme) to repeatedly illustrate the extent of my child’s permanent and incurable disability over and over again to dozens of different individual NDIA staff and delegates across a myriad of departments and other organisations.
What is especially frustrating about this cycle of effort is that it all seems to be a massive waste of time and energy when most the reviews over the years have resulted in little or no change to my child’s support plan.
In the very few direct reviews I have been granted with NDIA staff over the life of the scheme, it has been abundantly clear that those conducting the reviews or assessments did not read the submitted reports written by experts who directly assessed my child’s disability!
My child’s disability is permanent and incurable. They need life-long support to survive; especially when I have passed-on.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1667
Under these changes, participants could be expected to try all available treatments before being considered eligible for the NDIS. Importantly, treatments may still be considered “available” even if they are unaffordable or not available in your area.
Although my child is already eligible and enrolled under the NDIS I do not know what other available treatments could apply to my child’s incurable disability.
I cannot see it even being possible to try certain kinds of treatments on them given that the nature of their disability actually precludes the use of certain medical or therapeutic approaches.
With this in mind, you may also want to reflect on:
• What would these changes to the definition of permanence mean for you?
If the NDIA decides to halt or suspend my child’s support under the NDIS based on a decision to reassess their eligibility under the definition of permanence, the impact would be catastrophic.
However, given that my child’s disability is incurable, I frankly doubt that there would be much impact, unless I was instructed that I needed to ‘try all available treatments’ – which would likely cause a substantial amount of additional mental strain to myself, my child and my family.
Finally, I would like to add that, since the inception of the NDIS I have found that NDIA and the scheme itself collectively more problematic to access and navigate than all the previous existing, locally accessible (State and Federal) schemes put together such as the DSQ.
It has been a constant uphill battle by both myself and my partner to demonstrate the extent of my child’s disability, to the NDIA’s satisfaction, and that my child needs support; let alone to obtain the supports recommended by health professionals in direct contact with my child.
Since enrolling my child in the NDIS I have spent an extraordinary amount of energy detailing the supports my child requires, only to repeatedly be informed that:
- my own lived experience as a primary care giver and parent,
- the opinion of an army of highly qualified allied health professionals,
- and the testimony of support workers, professional educators and various medical institutions
…was incorrect/inaccurate/insufficient, and that the administrators of the NDIS, who have never even met my child, are correct/appropriately informed and possess the professional qualifications to determine which supports my child requires.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1667
Only this year (after 10+ years of review cycles) have I started to see the level of support I believe my child needs whilst he still has me in his life. It is a source of extreme stress to wonder if my child will be appropriately supported under the NDIS without me to advocate for them when I have passed-on.
The proposed changes appear set to mainly affect participants in a negative way, allowing the NDIA to trim the cost of the scheme to align itself to what appear to be arbitrary budget decisions; none of which appear to have been made with the welfare of participants in mind. If the NDIS truly needs a budget review, I suggest looking at the cost of the infrastructure used to administer the scheme and the way in which the current assessment process is conducted; as I believe there may be substantial savings to be had within the scheme itself before it flows on to the detriment of its participants.
Yours Sincerely,