National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2711
29th May 2026
To Whom It May Concern,
I am contacting you regarding the proposed NDIS Bill and changes to legislation. I am the NDIS nominee for our 23-year-old daughter Ava, who has Dravet Syndrome, a rare catastrophic, degenerative, life limiting, genetic epilepsy syndrome.
Living with this syndrome since birth, life has been challenging with multiple hospital admissions for life saving treatments, and it has impacted every aspect of not only her life, but our entire family’s lives emotionally, mentally, physically and financially. (Ava’s story is too long to fully share but if you google my name, you will see many submissions where I share our story, one of which was for the inception of the NDIS!)
It has meant me giving up any hope and aspirations for myself, my career, to become her full-time carer. The day of Ava’s first seizure was the day I stopped living my life and have lived every day since ensuring her safety and wellbeing. We were initially told to prepare ourselves for Ava to not survive past school age but with a big team effort of medical professionals, highly skilled carers and my husband and I providing 24/7 support Ava continues to beat the odds.
We have been very fortunate to have had access to NDIS funding for the past 7 years and it has changed Ava’s and our world. I have self-managed Ava’s plan since commencing on NDIS and take this responsibility seriously. I manage a large plan with support from an amazing Service Coordinator and advice around physical needs from an amazing OT. Without their ongoing assistance we would not have achieved what we have. It is concerning to hear whispers that the government is wanting to remove self-management option?? Given that the work I do is saving the fund money this is a strange attitude if true. To date every year, I have return to planning review with a surplus! My hope is that self-management remains an option for families.
During the past 7 years we have built an amazing team of Independent Support workers who have all chosen to work in disability. Some we have had working with us for the entire time we have been accessing NDIS. This group of amazing support workers are everything to Ava. They are her social connection with age-appropriate people, and they know and understand the things she likes to do and of interest to her. Ava feels safe and secure in the knowledge that they all know her so well that should she have a seizure she will be well taken care of. For us her parents we can feel at ease that Ava is in safe hands when she is with her support workers.
This sort of support team is not built up over night and takes many hours of training, learning, working with Ava. We have worked hard to build a solid relationship for all involved. We were never able to build this level of stability through agency sourced carers as I found this work force tended to be more transient, often studying at university and were often just doing it for income as apposed to my current team who have all made a decision to work in the disability field. I currently have 14 carers on our team who all work various shifts. Some have permanent shifts; some are floating staff who assist to fill gaps when carers are away. On days when no one is available I cover those shifts. Our support workers are worth every cent they are paid for the stability they bring to Ava’s (& our world)
I am concerned with the governments push to force all providers into NDIS registration and question if this is a complicated and costly process the impact this will have on our team, we have worked hard to build?? As I mentioned above, I have had much better outcomes with independent workers than I ever had with agency providers! I ask that the government do not
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2711
force sole trader/independent workers into a complicated/costly registration process. It is already hard enough to find good reliable workers and am fearful this would lead to many leaving the industry. I think it should be acknowledged that those working as sole traders/independently also have the same over heads as any business e.g insurance, super, personal tax. I do not agree with the push for registration as I don’t believe that being registered means better outcomes. Monitoring behaviour is the key. The new portal uploading invoices is great.
The new bill is indicating that we will see all current participants forced to have reassessments in 2028. What a waste of money when in our case there have been so many reports of various areas e.g. Functional Capacity/Physio/Neuropsch/SD Reports – just as example and often never fully read or understood! Our daughters condition is never going away, the risks are never changing so why waste funds on something that we know what the answer is. I also do not agree that the medical diagnosis is going to be ignored over some AI tool. Along with this to take away an individual right to appeal but allow a minister to cut funding with no right of appeal is appalling.
The automated decisions and algorithms with no right of appeal remove all evidence of choice and control. We see how badly this system is working in aged care assessment systems with thousands of review applications due to unmet funding needs all because assessors have no capacity to override the poorly designed automated system ( I know this as I have a close friend who works doing ACCAS and another who works in a public hospital witnessing the back log of elderly in hospital waiting on funding to go home!) and the government wants to introduce something that’s failing majorly into an already bureaucratic burdened NDIS system!! Once again removing the choice and control of an individual! I am asking that this not happen and more time is spent that ensuring any introduced assessment tools are 100% accurate and ready to use.
All the negativity saddens me greatly. What started as a system to give those of us facing life with disability hope for the future is now being turned into a system so overloaded with bureaucracy it makes you at times want to give up! I am tired of hearing about how much NDIS costs and just once would love to hear a conversation about what it brings in. It is not just a big black hole where money goes out, and nothing comes back in. It brings employment, payroll tax, gst, money spent in the community which in turn increases gst, registration fees just to name a few things! It brings quality of life to so many. In my case as a full time carer it enables me to look after me too because if I don’t then I could become a burden on our health system.
I’m asking the government to not introduce this rushed bill. It will have devastating impacts on the disabled population and will add further stress to our lives that are already hard enough on a daily basis. Yes, changes are needed to the spending, but they should not be done to the detriment of the disabled population.
Yours Sincerely
Joylene Donovan- (Concerned mum & NDIS nominee)