National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3478
John & Louise Lupton
14/06/2026 Minister for the NDIS
Hon Jenny McAllister
NDIS changes
We are writing to express our deep concern regarding potential changes to the NDIS that may heavily impact our severely disabled daughter Veronica.
Veronica was born in 1995 with a rare chromosome diagnosis, resulting in a severe intellectual disability, severe autism and she is non-verbal. She has had multiple surgeries over the years, including dental procedures, hip reconstructions, knee cap surgery, bilateral cataract surgery and more. She has low bone density and Charcot Marie Tooth (CMT) disease which is a degenerative condition that affects her nervous system. Veronica’s condition means she is completely reliant on others for everything in her life.
After many years of providing 24/7 care for Veronica, we finally got to the desperate point of having no choice but to relinquish care of Veronica in February 2017. We had instances where Veronica would wet the bed up to 30 times a night and sometimes only sleep for a few hours waking at 9pm expecting her daily routine to commence as she is unable to differentiate between night and day. This put huge pressure on us and our son. This decision to relinquish was the toughest period for our whole family and still haunts us to this day.
Veronica moved into Supported Independent Living (SIL) in February 2017, where she has been cared for ever since with 24 hour care. She attends a day program 5 days a week that includes outings into the community - activities such as bowling, walking group, pub lunches and other in-house activities. These outings perform an important role in connecting her with her community, improving her health and wellbeing and developing life-long skills. Community Participation appears to have been targeted for huge cuts (50% if the media reports are correct). If she loses access to some community participation programs, then the SIL provider will need to have their funding increased to look after her in the group home on the days she doesn’t attend which means she will sit at home and not be engaged in activities as she has been for the past 12 years since leaving school.
We are not in a financial position to fill these potential shortfalls in Veronica’s NDIS package, so what happens to Veronica as a result of these potential changes is quite scary.
Our concern is that if Veronica’s NDIS package is reduced due to the planned cut backs how this will impact her quality of life. The planned cutbacks have also mentioned cuts to Allied health services. As mentioned above, Veronica has a degenerative nerve condition that requires ongoing intervention from both a Physio and Occupational Therapist. Her OT also helps her with developing skills in activities of daily living. As she is non-verbal, her Speech Therapist provides vital communication skills and aides, and her Psychologist/Behaviour Support Practitioner is there to help with the behaviours that present themselves in people that have severe autism. As Veronica’s condition is lifelong with no cure, these changes will have a huge impact on her life. Are we heading back to the days where people with disabilities are locked away from society because no one cares or because they will never be a threat at the ballot box?
Both the Community Participation and therapy sessions help to give Veronica purpose and help build life skills. We were in the system before the NDIS when it was pot luck depending on where you lived, whether your child would receive services. At one point there was a physiotherapist that visited our area once a month and with a huge waiting list, we were lucky to see her once every nine months. We also had to engage private therapists to make up for the shortfall in therapy sessions. The NDIS changed that for many families, so it would be a shocking thought if we had to go back to those terrible days.
Our questions to you are: If someone with Veronica’s complex needs has to do without basic services, where is the world headed? Why is it that the most vulnerable in our society are treated with contempt and are expected to put up with a lack of services that you or I would not?
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3478
Another worrying aspect to the changes is the call for packages to be reviewed via AI. How can you review life changing and life dependant NDIS packages using AI with little or no human oversight? How can there possibly be any empathy, compassion or understanding of complex needs using AI??
This self-centred, disconnected world we live in needs to take a good hard look at where we are headed and start to treat people how we would like to be treated ourselves. Let’s stop and take a look at the potential impact of more automation and less human connection particularly when helping those most vulnerable in our society.
We would ask that when new systems are bought in, that we don’t lose sight of those the program was set up to help in the first place.
We look forward to a common sense approach to how we treat those with lifelong disabilities in our community and not making their lives even more difficult.
Thanks for your time