Submission 1456
Submission to the Parliamentary Inquiry into Changes to the NDIS, 28 May 2026
Author: Location: Hobart, Tasmania Role: Parent, Carer, and Teacher Children: Three children aged 12, 9, and 6 (all NDIS participants)
I am the parent and primary carer of three children aged 12, 9, and 6, all of whom rely on the National Disability Insurance Scheme (NDIS). My eldest child, , has a rare disease from birth and is non-verbal. My younger two children are both diagnosed with autism and ADHD.
In addition to my responsibilities as a carer, I am also a teacher. I understand both personally and professionally the critical role that early, consistent, and individualised support plays in enabling children with disability to thrive.
This submission outlines my deep concerns about recent and proposed changes to the NDIS, including the Thriving Kids Initiative, and the significant negative impacts these changes are already having—and will continue to have—on my children and my capacity to care for them.
Firstly, the recent changes have been introduced without a clear, accessible, or practical pathway forward for families like mine. The uncertainty and lack of clarity have caused severe emotional distress. The messaging around the Thriving Kids Initiative, as communicated publicly, has left me feeling abandoned and frightened for my children’s future.
This stress has had real and immediate consequences. I was discharged from the Critical Care Unit (CCU) just two days ago following a hospitalisation directly linked to carer burnout and emotional overload. Despite this, I am already back in the role of advocating and fighting for my children.
This is not sustainable. No system designed to support vulnerable families should leave carers so overwhelmed that they become critically unwell.
I am frightened that the NDI in its current iteration is up for negotiation. As a parent, I need to plan long-term for my children—particularly for , whose needs are complex and evolving as he enters puberty and transitions toward high school. However, it feels impossible to plan when the system itself can be altered at any time to meet budget constraints.
This instability creates fear and paralysis. I am currently too afraid to request a plan review for him despite his increasing needs, because I fear we may lose vital supports and be left worse off than we are now.
A scheme intended to provide security has instead become a source of constant anxiety, administration and anger.
I am scared that the push to move toward limiting supports to registered providers significantly reduces choice and control for families.
My children, particularly my eldest who is non-verbal, rely on trusted relationships with carers who understand their needs, communication styles, and behaviours. Being forced to engage with larger, for-profit organisations removes our ability to select people we know and trust.
This is not simply an administrative change—it directly impacts my children’s safety, wellbeing, and dignity.
Submission 1456
The NDIS was founded on principles of choice and control. These changes undermine those principles and place vulnerable children into systems that may not be suitable for them.
I am scared because any reduction in social or community-based supports would have devastating consequences for my children.
My eldest child requires 1:1 supervision to safely leave the home and engage with the community.
Without this support:
- He will become isolated at home
- He will lose opportunities for meaningful social interaction
- His skills will regress
He loves people. He wants to engage. But without appropriate support, he will be confined to our home, watching Peppa Pig and the Wiggles on repeat and becoming further disconnected from the outside world.
This is not humane.
I am scared because the reduction in capacity-building supports will have long-term consequences not only for my children but also for the system as a whole.
can learn—but slowly, and only with consistent, targeted support. Skills such as toileting,
bathing, and personal care require ongoing development.
Without continued support:
- He will lose skills
- His independence will decrease
- Future care needs will increase significantly
This will result in greater long-term costs to the NDIS, including funding for continence products and high-level personal care.
For my younger children, losing access to 1:1 coaching and therapeutic supports will directly impact their ability to develop social skills, regulate emotions, and participate meaningfully in school and community life.
We have established strong, effective support teams for each child. These supports are working. Removing or replacing them risks undoing years of progress.
As a teacher, I am scared. My colleagues and I are already burning out or leaving the profession or reducing working hours. Currently there are minimal allied health provisions in schools. This would leave the workload on teachers. Changes in the budget to the current NCCD moderation are already going to be absorbed by teachers within the budget submission, how are we supposed to manage this too? At the end of the day it is our students who will again miss out. In addition, if the parliament is looking outside of the school context at the broader Hobart community to provide allied health services, in it’s current iteration the public sector could not absorb the supports currently delivered through the NDIS.
This issue is even more severe in regional and remote areas.
Submission 1456
The idea that mainstream systems can replace NDIS-funded supports is simply not grounded in reality. The infrastructure does not exist. The people do not exist. The transport to these locations does not exist. Thriving Kids will take away support before a plan has even been proposed as to how these supports will work.
Without significant investment and development, these proposed changes will leave children without access to critical services.
I am not just writing to you as another number, I am begging you to reconsider these changes, or to at least seek real consultation from people who are carers or are disabled, not an ad-hoc 2 week submission period after the proposal.
I am exhausted. I am frightened. And I am heartbroken.
Every night, I go to bed wondering how I will continue to care for my children under an increasingly broken system.
The most painful truth I can share is this: At my lowest point, I have found myself wishing that my son might pass before I do—because I cannot see a future where he will be safe, supported, and cared for without me.
No parent should ever feel this way.
This is what happens when a system designed to support vulnerable Australians instead creates fear, stability, and exhaustion.
Key Recommendations
- Provide clear, stable, and transparent guidance on all NDIS changes before implementation
- Preserve true choice and control, including access to non-registered providers
- Maintain funding for individualised supports, particularly for children with complex needs
- Protect and expand capacity-building supports
- Invest in allied health services before shifting responsibility to mainstream systems
- Do not change the way that ‘permanence’ is defined in the act- this is an ableist and harmful use of semantics.
- Recognise and address the growing crisis of carer burnout
Thank you for considering my submission and for the opportunity to share the lived reality of families like mine.
Regards,