Submission 2793
Inquiry: The National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
01/06/2026
My 45 year old brother has an Intellectual disability, Schizoaffective disorder, ASD level 3, Type 1 diabetes as well as other medical diagnosis’s.
Both of our parents were diseased by 2014- leaving me to look after my brother.
I was aware of how much support my mother provided him, although not to the extent he requires now at the age of 45.
Prior to NDIS he received 5 hrs per week of support through a package- As well as in home care by the local council. We live in a small rural town of around 2000 people. These services are no longer available, and we have struggled to find the right services to be able to support him. We used to have a local service although once the NDIS came into effect they refused to support him due to a) his nonsense stories and behaviour in the community which made the supports and the community feel uncomfortable b) his diabetes and other health related management.
Since 2017, we have had at least 9 different services. Many traveling from other areas as we only have one service in this town. My partner and I have supported and trained many support workers and appointments.
I have three young children., I am an interstate truck driver, and my partner had to leave her full-time position at one point to allow the flexibility to look after him. This has affected us and our family in many ways- employment, finances, time with our growing family etc.
Many services struggle with understanding how to support with informed decisions following what the health professionals recommend.
He requires 5 insulin injections per day – and due to his diabetes being rarely manageable on his own due to his lack of comprehension- he requires extensive support = to have a set routine, eat the right foods, attend his ongoing appointments, be able be part of his community.
With diabetes alone- comes the other health related concerns- optometrist visits, podiatry visits, digestive issues, many physical issues.
I have never expected the NDIS to fund anything which is not related to his non- NDIS recognised diagnosis. He pays for his own medical appointments – including his Psychiatrist appointments. He pays for his own surgeries and appointments. Although he has had a very good NDIS package, we have never spent all of it, we spend it only on what he needs, and we always have funding left over each year when the plan extends. We do NOT use the funding from the previous year – we do not need to.
Submission 2793
We have tried our utmost best to ensure there is a distinguishable line when it comes to NDIS and Health.
I too have type 1 diabetes. We spend a lot of time training supports to understand and support him to have as much choice and control in his life as possible.
We are so grateful to the NDIS for supporting my brother in striving for a better future. One that I cannot possibly provide him alone.
Over the past 9 years, he has gone from an aggressive man with a poor diet, poor hygiene (he showered once a fortnight) who used to roam the streets, punch holes in walls, being inappropriate to children, starting fights with random strangers- talking inappropriately to them just because he felt like it, going into people’s homes because he thought he had the right to – as he thought everyone wanted to be his friend, unmanageable diabetes because he would not eat the correct foods, not attending appointments, roaming the streets with a weapon, making weapons, talking nonsense and making up stories
To now- he attends a day program 3 days per week, he has been matched with other participants who he can learn from , he is part of the community, improved behaviour, medicated, attending regular psychiatric, medical, specialist appointments, eating a much better diet, getting more sleep, making real friends and has so much to look forward to each day.
If this is taken away- he may not live many more decent years.
I cannot look after him 24/7. My grandparents are in their late 90s and my other brothers do not live close by. We have no one left.
If the proposed changes occur, he is at risk of losing his valuable supports at any time.
The reason his original behaviours are manageable is because we have a strong team:
We have a Behaviour practitioner, OT, Support Coordinator
Support Workers who take him to most appointments – he lacks the cognitive function to be able to take himself to these appointments. He cannot take public transport. He cannot use the internet or read a timetable, he has no sense of direction- he would get lost and put himself and others at risk.
His appointments are mostly in Bendigo, Castlemaine and Ballarat.
We rely heavily on supports taking him to his appointments and communicating the follow up. He cannot manage his diabetes or psychiatric issues due to his Intellectual disability, cognitive impairment and ASD level 3.
He has always been managed by a Complex NDIS planner due to this.
Submission 2793
We also have an external – non-NDIS funded team including Psychiatry, Diabetes Management, Endocrinology.
If the Minister is given the power to be underhanded- to make changes without transparency, reducing ratio of supports, omitting diagnosis, changing the pricing and making caps and then taking away the basic human right of having a say- making it more difficult to review a plan- this will put my brother and many other participants and all their families and carers at high risk.
In my brother’s case- it will result in degradation of health, quality of life and a shorter life expectancy. I cannot look after him for the rest of my life.
The only reason I have somewhat of an understanding of some of the changes Is because my partner researches as much as she can to say on top of it. If it was up to me alone- I cannot keep up with the ongoing lack of information provided by the government.
This ‘reform’ will put people back in group homes and institutionalise people with a disability.
My brother did not choose to be the way he is. My late mother tried her best on her own with no support from anyone. The government is planning to rip apart what has worked for so many. Does the government not realise the NDIS may have its flaws- but it is not ‘broken’. It has helped so many of us provide a quality of life to our loved ones. Why would you take this away from us? Why would you take away the independence it has created, the quality of life it has created?
I agree there has been quite a blowout with the budget I agree that there are many out there that do not do the right thing. Why punish the ones with a disability – the reason the NDIS was created? Why punish the families that are not greedy, the participants that have a good quality of life now?
If he loses his Social, community access- he will be roaming the streets again. (He was hit by cars crossing the road multiple times prior to being supported) He will no longer be supported to strive. He won’t be able to attend his many appointments. His community access includes so many supports: appointments – they are not an ‘everyday expense’ when you cannot read/ write/ comprehend what is going on! He has multiple appointments.
Shopping: He does not understand money/ budgeting (Prior to being supported, he would get aggressive in the community if he had overspent his personal budget. He would purchase items that he didn’t realise would affect his BSLs)
Day Program- this gets him out being part of his community- a basic human right.
At present his therapy is as equally important: His behaviours are always changing and supports require training to support him without restricting him or taking away his choice.
Submission 2793
He is not able to comprehend more than 2 step tasks at the one time. Yes- this is evidenced on multiple reports!
I could go on and on about what he was like prior to the NDIS and the changes in the past 9 years. I can tell you all about the effects these changes will have on his life if removed – but I cannot make you listen. I can only try and be heard for the fight to save the NDIS from this reform.
Please find another way and do not take this from people who really need the support.