Submission re : National Disability Insurance Scheme Amendment (Securring the NDIS for
Future Generations) Bill 2026
My Background
I am mother, and carer and nominee for my young adult son who has a disability caused by a genetic syndrome. It affects him physically, mentally and emotionally. He is non-verbal, eeds full assistance with all self care, has dysphagia so is at risk of choking, vision impaired and has behaviours of concern, amongst other challenges. Prior to NDIS he struggled, and in turn our family struggled with little support. I was a burnt out husk of a human being, s \subject to violent attacks from my son. I have been out of the workforce since he was born, due to the immense time, emotional and physical energy it takes to care for my son. When the NDIS came in, we started to put a team together to support him. It has taken a little while, but now he is supported, and in turn I feel supported, with not the whole esponsibility and burden of care on my unqualified shoulders. We now have a team of Allied Health therapists, a team of support workers and this has made a world of difference to our lives. The change in him, with the right supports in place has been amazing. Of course, he still has many challenges, and will continue to for his lifetime, but with the ongoing supports he has grown into a social and confident young man. He has a wonderful group of friends in his day program, with them, they are supported in the community, learning about the world and learning new skills together. With these supports in place, I have been able to get back into the workforce for the first time in 18 years, albeit a very casual role, as I still take on a lot of the caring role. While the role of a carer is still very challenging, both of our mental health has improved with the right supports in place.
While it has made an immense difference to our life, dealing with the NDIS is at times very stressful. Each year when his plan is reviewed, we hope the planner assigned to his case eads all of the very expensive reports we have submitted. We hold our breath hoping that he gets the amount of funding required to keep up with the programs, his 1:1 support, and therapy that has changed his life. I fear some of the changes in this Bill submitted will inintensify the stress on families, and participants in regards to being able to continue, sometimes life saving, supports they have in place.
Introduction
Welcome the opportunity to make this submission to the inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. A\gre \that there must be changes to the NDIS to keep it available to people with a disability going forward. While I agree with some parts of this Bill will help this, I believe others will be detrimental to people with a disability, and their families. People that thrive on structure
Submission 820
A standardised tick box assessment cannot accurately capture the complexities of many disabilities, particularly fluctuating or neurological conditions. How can this automated assessment override the treating allied health and specialists who work with the participant and understand their conditions.
I am also concerned as to how these results will impact or go towards how funding is determined. For example, I know many other people and parents of those who have the same diagnosis as my son. Although they have the same diagnosis, they all present differently and have different challenges. As well as the person with the disability themselves, their family supports systems are very different, and the scaffolding of support looks very different from one family to the next.
The proposed changes represent a significant departure from the foundation principles of the NDIS, which are intended to be based on individualised assessments of disability support needs rather than arbitrary fiscal measures.
While the current Minister for Health and the NDIS minister do not hold formal clinical, medical or health qualifications, they will, if this Bill is passed have the power to – Alter funded supports, reduce pricing caps, redefine funding categories, tighten eligibility, modify assessment processes. These are not just substantial changes to help the budget lines; these are substantial changes to people’s lives—I think that’s what is being forgotten in all of this.
With the already proposed cuts to Social and community budgets. In my son’s case, his whole adult day program comes under this budget. This isn’t just about people sitting around having coffees etc., as we read in newspapers leading up to these.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 820
an announcements. This has been a life-changing program for my son. It keeps him physically active, it allows him to get out into the community and learn about the ways of the world, and build skills. To outsiders, social and community funding may look like a waste, but for someone like my son it gives him confidence; it allows him to communicate with his device to other people not just family, he learns problem solving, making decisions, giving him more autonomy as any adult should have. He gets to be with a group of peers instead of with his parents, as any young adult would want and deserve. He does this with 1:1 support, but he is part of a group, part of the wider community – one of the ideals that NDIS was built on.
Again, my son thrives on routine, and we as carers like some degree of certainty regarding what his future supports will look like, and giving a minister from the government of the day the power to make cuts, on a whim or as a lever to make their budget look better will be extremely harmful for the disability community. Without support, some people will be unable to leave their home for days, unable to live ordinary lives reducing their ability to have connection, community, friendship, fresh air, routine and belonging.
A guard rail must put in place so participants requiring 1:1 support those who need behavioural support and higher needs 24/7 care, the funding cannot simply cut. And those in adult-day programs where these present opportunities such as mine sons, also allowing carers return workforce roles paying tax contributing economy.
Part 9 — Eligibility based on access to other services
I agree far too many people are accessing the NDIS; many having needs addressed by other community health supports BUT they’re accessing it because available overrun not otherwise accessible States cutting when came into effect meaning no choice had been made I concur thriving kids extra funds allocated towards initiatives good however timelines extended ensuring systems properly implemented avoiding gaps individuals dropped without assistance.
SCHEDULE 2 FRAUD MEASURES
I agree there should more measures prevent fraud providers.
The smaller providers remain unregistered due large administrative financial burden registration currently requires.
a tiered approach could recommended small operations say 1–6 participants 7–12 13–20 20–50 etc different process larger corporate ones couple current providing this reason wonderful provider’s son life changing us.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 820
leave the industry/not supporting NDIS clients due to burdensome administration procedures.
OTHER SUGGESTIONS FROM A CARER WHO DEALS WITH NDIS AS NOMINEE FOR MY SON
- Each review I have each therapist write a report, our recent review we had a therapist leave, but before they left, they wrote a report for our NDIS review. As this report ended up being over 6 months old, I was instructed to get a new report. All of these reports are costing NDIS money. Can we stretch out, for stable participants, the report validity to say 12 months or so (with consultations from relevant bodies)
- Make sure planners are reading the reports that are submitted; this simple act could save the need for people needing their plans regularly reviewed and save on the amount of reports we have to gather.
- Target fraud by providers first, rather than targeting vulnerable people with disabilities to improve your budget bottom line. Tighten the framework for providers to prevent fraud.
- Give the option of 1 year or 3-5 year plans. BUT have reasonable opportunity for review if the participant’s change significantly. My son will likely have skills regression in his adulthood, but when that happens I don’t know, so I would like the opportunity to be able to review his plan.
- Look closely at the providers that provide support in the highest budget items, SDA and SIL providers; it seems there are some large companies and not for profits that take a big slice of the pie so to speak.
- Make sure we keep the person centred approach, blocks of funding based on a computer score
The introduction of the NDIS has changed the lives of people with a disability immensely. I find it wonderful to see so many more people with a disability when I am out and about in the community. But as I said earlier, I agree that some things need to change to keep it sustainable. But the Bill in its current form is damaging to those most vulnerable in our community, so some adjustments must be made.
Thank you for considering this submission.