National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2348
To whom this may concern.
My wife and I are deeply concerned about the proposed changes to the way the NDIS will be implemented in the future. Our 28-year-old son, who has Level 3 autism, an intellectual disability, and physical impairments associated with his autism, was among the early participants in the scheme when it first began.
When the NDIS was introduced, it was life-changing for our son and for us as his parents. It gave us hope that the supports he needs to live with dignity would be available throughout his life.
Ongoing Challenges
Over time, however, dealing with the NDIS has become an increasingly stressful and exhausting struggle, particularly as we grow older. We are constantly having to fight to maintain—or increase—the more complex supports our son needs as he gets older.
Intellectual disability is lifelong. Autism is lifelong. His physical impairments are lifelong. These conditions do not disappear when a child leaves school. In many ways, the challenges have become greater as our son has grown older and has had to navigate parts of everyday life that most people take for granted.
Concerns About Social and Community Participation Funding
We are especially concerned about the proposed cuts to Social and Community participation funding. The minister referred to an example of a person falling from their wheelchair because a support worker was distracted by their phone, and used that as justification for reducing overall funding in this area.
I have seen similar situations myself, where carers are not properly engaging with the people they are being paid to support, and it is deeply frustrating. What is even more frustrating is the apparent response: reducing funding for participants rather than holding poorly performing support workers accountable. It makes no sense to punish the person receiving support because a paid worker has failed to do their job properly.
Journal Extracts
Below are extracts from a journal I have kept over time. They describe the challenges our son faces and the impact those challenges have had on us as his parents.
A quote I read “I read this quote on an autism site yesterday “ Psychology shows that when autism parents live in constant survival mode, their bodies and minds adapt to ongoing stress.
They stay alert, hyper aware and emotionally drained, always bracing for meltdowns,
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2348
judgement, or the next unexpected challenge. Even in quiet moments, true rest feels impossible.
It is not overreacting; it is the nervous system forgetting what peace feels like.” I read that and thought, “That is our life.” It captures our situation exactly and helps explain why there is constant tension whenever the three of us are together.
We have heard that the NDIS plans to reduce supports and place more responsibility on parents. After 28 years of caring for our autistic son, we are exhausted and burned out. When do we get to simply be parents rather than carers? It feels as though that day will never come.
Social and Community / Respite Our son is becoming increasingly bored on weekends. He used to take part in several activities run by different organisations, but we have already had to reduce them because of funding cuts. It now appears we may have to cut them back even further because of the proposed reductions to Social and Community participation funding.
He also used to go on overnight stays, usually in the city, through a NDIS-registered organisation. The NDIS no longer considers this “value for money.” Yet these stays gave the chance to step outside his comfort zone, meet people beyond his workmates, spend time away from Mum and Dad, and become familiar with the city and its suburbs. They were valuable learning experiences. With support from carers, he would shop for food, organise meals, or go out for a meal. These activities helped him build life skills and increase his independence. They often included outings such as going to the movies, the zoo, or a museum—things many people take for granted and can do alone or with friends and family. cannot do these things independently; he needs someone to support him. The NDIS says this should fall to friends and family. What it does not understand is that, like many autistic people, does not have friends in the way most people do. He was the child who was never invited to birthday parties, who was bullied at school, and who struggled to form genuine friendships. At 28, he is still in much the same position: no close friends, no one to call and say, “Hey , we are going to the movies or out for a meal—do you want to come?” He has never had that, which is especially sad because he is a very sociable person.
As for family support, it is only us—his Mum and Dad. He has a grandmother, but she is getting older and now needs our help with shopping and other tasks. So not only are we still caring for , but my wife is also now an informal carer for her mother and spends most Saturdays taking her shopping and helping with other things she needs to do.
He also has a brother, whom he sees occasionally, usually when he visits us. His brother now has a young family and his own business, so he cannot provide with ongoing support. Beyond that, there is very little family support available. Other relatives live too far away to help and have their own families and responsibilities.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2348
We do try to take out from time to time, perhaps for a meal or the occasional outing. But how many men in their late twenties want to spend all their free time with their parents? Apart from when we are at work, the three of us are together almost all the time. The difficulty is that we both work full time and have our own responsibilities as well.
Weekends are for household chores, rest, and perhaps the occasional recreational activity. We are getting older, and our energy is not what it used to be. We rarely get the chance to simply be our son’s parents, and if the NDIS removes more formal supports, we will be expected to become full-time carers rather than parents.
Our son’s social contact is almost entirely through work. Outside of that, his only interaction with others comes through formal activities organised by service providers. Even then, he is usually with the same people he sees at work, all of whom are in similar situations, so his social world remains very limited. The NDIS appears to believe that weekend activities are not “value for money” and that social contact at work is enough. But how many of us would accept that—seeing only workmates and no one else on weekends?
The organised weekend overnight activities were a vital outlet for him. They also gave my wife and me a rare opportunity to rest and spend time together as a couple. I am sure valued that time away from us as well. There is always tension when the three of us are together for long periods, and there is no doubt that having with us all the time has affected our relationship. Since he was born 28 years ago, we have never had a holiday—or even been away from home for more than one night—as a couple. To suggest that these overnight stays or other structured social activities do not benefit our son shows a serious lack of understanding on the part of the NDIS.”
Capacity to look after own Financial Concerns Spent a good hour today going through our son’s bank and PayPal transactions to make sure everything is legitimate that he spends his money on. Must do this regularly as he has been scammed twice and made some dubious purchases online, luckily no massive amounts of money were lost. Have managed to get money back from Google on a few occasions. He tends to subscribe to anything that takes his fancy , sometimes he subscribes twice to the same thing because he forgets he has already subscribed. Our son has very little understanding of how much things cost and if he can afford it. Hence why I get alerts every time something goes out of his bank account.”
He needs ongoing support from his Psychologist to try and help him control his impulsive urges, his OT to try and help him gain an understanding of the value of items, to understand budgeting. We try to talk to him about it, but we are his parents, a 28-year-old doesn’t want to be told what to do by his parents, he needs formal supports to do this.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2348
Support Workers One of our son’s support workers, came today for her regular Friday support session She teaches him about and helps him with everyday life skills. Things such as changing and washing bedding, washing clothes, folding and putting away clothes that have been washed, housework, shopping and getting cash from atm. Generally she helps with anything he needs to do to get through a typical day. Listening to her she is very good; she has helped him establish a routine. He needs reminding and prompting to do certain things. It’s a pity she is only here for a few hours on one day a week. That is all the funding we have allows for though.
On days when she isn’t here, he regresses and relies on us his parents to do stuff for him. This is very tiring, we have our own life tasks to get on with, which often get neglected because we spend so much time looking after ’s needs. We try to remind him to do stuff like does, but he gets agitated. After all, how many 28 year old men want to be told what to do by their parents?
It concerns us that any reduced funding or access to supports will see our son regress. It will throw even more onus on us, his ageing parents. Our energy levels are dwindling, I have no doubt the extra work we are doing for our son, the same things we were doing when he was a young boy is affecting our health, its certainly affecting our relationship. The NDIS talks about sustainability. They are only concerned with financial sustainability though. How sustainable is it that the NDIS intends to throw more onus on already exhausted parents instead of formal supports if we end up burned out, in hospital because of failing health ( a burden on the already stretched Health system)?
Cuts to funding for vital supports Had to take day off work today , a day I don’t get paid for ,to take to any medical or NDIS related appointments.
Firstly, he had to see the Community nurse. Now the NDIS have cut funding for him to see podiatrist, exercise physiologist and psycologist we had to see what care he could get through other channels.
The nurse asked him and me about his general health and well-being, also his medical history. As I explained to her the podiatrist has identified problems he is having with his feet and balance , because of poor muscle tone and misalignment of his feet. A common trait amongst , people with autism , which she explained in the last report she submitted to the NDIS. Yes, he will also need someone to cut his toe nails as his poor fine motor skills and lack of coordination means he cannot do it himself without injuring himself. It’s not just “nail care” as the NDIS put it to us once, its far more complex than that.
An Exercise physiologist was also helping him with his balance and core strength so was able to work more effectively and for longer periods without tiring. Anyway he now has a care plan which is still inadequate for the ongoing foot care and therapy he will need for the rest of
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2348
his life. It also doesn’t cover Orthotics something he needs and something the NDIS was happy to pay for in the past.
After seeing the nurse, we had to see his doctor to sign the papers.
The day made me ask, what happens when we are not around, who does all this for him.? He lacks the capacity to do this for himself, and the NDIS won’t be assisting, not judging by the way they are trying to distance themselves from participants needs more and more. Doing all this for has meant my wife and I I have had to put some health concerns of our own to the side until we get ’s concerns sorted.
Meltdowns Our son had a big meltdown today. He has these from time to time. His phycologist has been helping us and to come up with strategies to try and help avoid these meltdowns. I was trying to help him set up his new phone. I have found I can only show him one thing at a time because he gets agitated very easily if he doesn’t understand or it’s taking too long to achieve what he wants. It’s also a case of his dad telling him what to do again, he will gladly listen to someone else eg his OT, his psychologist , a support worker, but not his Mum or Dad. His psychologists says it’s because with us he doesn’t feel the need to mask what he is really feeling like he does with others. Anyway he was getting increasingly frustrated because things weren’t going to plan and he accidentally ran over my foot with the casters of his computer chair. I let out an exclamation which set him off and he slammed down his phone and stormed off to his room, slamming the door and started throwing things around in his bedroom. He broke his headphones. He has broken TVs and several mobile phones in the past. My wife went in to try and calm him, and she said she had to grab his arms to stop him hitting out. He is a 28-year-old man, with all the strength that brings with that and my wife feels she can’t restrain him like that for much longer He blurted out “this is why I don’t want to live here anymore” And he doesn’t. he wants his independence. Thing is everything we have done with our son, all the service providers we have engaged over the years, providers we could never have engaged with without NDIS funding has all been to try and help provide with the skills and support for a life of being as independent as possible, a life of his own, a life that isn’t ruled by his parents. It seems that the NDIs wants to take all that away. It’s a time when we need to take the next step with our son and seek funding for SIL but are afraid to do so because we fear not only will the NDIS refuse to give us that but will also take away a lot of the funding we have fought so hard for to try and give our son the life he deserves.
Holidays, a rare occasion in our house Just returned from a 10 day holiday in Tasmania. As usual our son came with us, we can’t
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2348
leave him at home without any means of support. My wife and I have never had a holiday as a couple since was born 28 years ago. Even though it was a ”holiday” my wife and I found very few opportunities to just relax. I think our son enjoyed it. Having our son with us means we must think about what we do, he gets frustrated if we make too many stops to look at stuff.
There was quite a bit of tension at times. Not surprising when the three of us are in each other’s pockets for 10 days in a row, just like we are at home.
Our son did have a couple of meltdowns while we were away. Like any young person of his age, he doesn’t want to be around his parents all of the time. At times it didn’t feel like a holiday as my wife particular had to make sure every morning he was prepared for the day, no different to what she has to do at home really. When we were discussing all this with our son’s s psychologist the next time he visited her she said “ I can sense the tension, you and your wife sound burned out” We love our son to bits but I get the feeling as gets older he doesn’t want to be with us all the time, just like any other young adult wouldn’t want to be in their parent’s pockets at this age. Problem is the way things are now, if we want a holiday, our 28 year old son has to come with us.