National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2322
My family hasn’t always had access to the NDIS. I say ‘family’ because even though it’s the participant who directly benefits from the support, the lives of everyone in our family has improved. NDIS participants are members of families who, try as we may, can’t provide everything they need to a suitable standard without letting other duties slip, like the care of other family members. It’s important to recognise that a cut in NDIS supports mean; cutting the time Australian families can spend together through increase caring roles, reducing the income of already struggling communities by making them pay for disability specific items not required by non-disabled families and, in the long term, the caring duties become generational – being passed onto the children, siblings of disabled children.
These cuts are not just NDIS cuts. They cut into the heart of Australian families like ours.
The changes to the Act are unclear. Our government will be asked to vote on amendments that the details will be filled in later. Would you sign a legal document where you couldn’t read the fine print?
My understanding is that the Minister will be able to change the NDIS at will, from their desk with no consultation and no parliamentary approval. This is not democracy. This is not the Australia my family fought wars for. In fact, my family fought to save Australia from such policies. Do not give the Minister authority to make changes without the checks and balances from the elected representatives of the Australian people.
‘Perminence and fully treated’ disability is an absurd term. Clearly this was not discussed with people with lived experience. I have a chronic illness that my specialist says is permanent and disabling. I have not tried ‘all available treatments’ as I am allergic to one and the other, I can’t afford. Does that change my disability status? No. But I will not be eligible for support. The NDIS requires reports from specialists as disability evidence and yet, when provided, it’s not enough. My specialist is a leader in their field and yet the NDIS insists it knows better and wont fund supports without putting my health in danger. As a side note, it needs to be said that the medical community are losing respect for the NDIS, many specialists are not wanting to bother to write reports they know will be unread or have their expertise dismissed. Does ‘fully treated’ mean finished with therapy? One of the main funding areas we need is for therapy. This is not Our NDIS.
Community Participation is crucial to safeguarding vulnerable people. If people with disability are isolated, seldom leaving their homes, who will catch the neglect? Anne Marie Smith was isolated and only saw her in-house supports. There was no-one outside of that closed system to befriend and look out for her. I am a member of a couple of peer groups which has been absolutely invaluable for not only my own well being but also as a font of knowledge to keep my family afloat. Carer burnout is common and as a group of now friends with similar experiences, we support each other. When my child broke all the doors in my house I not only got emotional support but the number of a great handyman. When we made the decision to homeschool because the school system was and is, inadequate, there was a peer group waiting to welcome us in. Disability families may look a little different to non-disabled families but it’s not true. We are very different. Have you ever had to watch your suicidal eight-year-old 24/7 because there’s no inpatient place suitable? How do you teach your child to read and write who can’t stand touching paper? What about the child who refuses to sleep inside the house? My child’s ‘tantrums’ meant screaming for four hours until he was asleep – then, upon waking, began again because he felt terrible.
Finding at least four hours each week to; chase up therapists, make sure reports are done, check invoices before paying, pay invoices and update spreadsheet terrified of not having it all together if audited, liaise with the school or homeschool taskforce and find social experiences for my child that he won’t hate. How can you have visitors when the doors are broken, the paint is peeled off from walls by little fingers, piles of washing in most rooms and you haven’t the time to vacuum. Every single person in my peer groups knew my life, it was their life too. They got me through my darkest days and still are. This is what you are taking away if you cut Community Participation.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2322
My son was growing in independence when he was assaulted. As a parent my heart broke for my child who was always so happy and excited to grow up. He was left with terrible PTSD and didn’t leave home for four years. He would go into the backyard but not even the front of the house.
We took him to a great psychologist, who helped a bit and continues to support him, but what really made the difference was his disability Dungeons and Dragons peer group. The group is led by a very experienced Dungeon Master who works with the young people to help them connect as a group and support each other in great trials and battles, akin to life.
Just weeks after starting the group, my son started going to the letterbox IN THE FRONT YARD! I cannot explain to you the huge steps he has made because of that support. He is back going to the shops by himself and even goes to D&D with a support worker!
Having a great support worker is key. It took years to find her, but we knew she would be the right fit straight away. My son can speak but also uses Auslan and an AAC especially when anxious, usually it means he doesn’t speak to people outside his family. , his support worker, has shared D&D with him and they are able to chat all the way home.
As a parent, to know you have backup outside the family is so important – should I land in hospital, or worse, I know he’ll have someone else he can rely on. Without the Community Participation funding he might still be waiting at home for his life to begin.
Cutting Capacity Building supports is economic suicide. These supports are the ones that help us get the skills to need less support. If my son didn’t have OT he would need help with; dressing, eating, toothbrushing, balance, muscle control, coordination, writing – so many things! As it is, because of therapy, he is almost independent, not needing daily support workers! I love the NDIS for that!
When he was young, he would have huge tantrums from not being able to communicate. With the help of good Speech Therapy, he can now tell me he; loves pasta, needs a hug, is ready for D&D and he hates my choice of music! Capacity Building supports helps us to live our Ordinary Lives and saves the government money in the long term.
A very close friend of mine from a peer group uses an electric wheelchair due to a degenerative disease. I understand that one of the amendments is looking to reduce support work from !:! support to a minimum of 1:2 support ie one support worker for two people. I imagine, in rare situations, this may work but not for my friend.
She lives in her own home and needs help morning and night. How will the new ratio work for her? There is no-one nearby to share with and even if there was how would that work? The support worker would help my friend into the shower then nip down the road to put the other person in their shower? It’s dangerous.
Perhaps you think it’s okay to put my friend on a list of showers for the morning. So, at some point during the morning she could get up and have a shower. Would that work for you? My friend is a busy woman, sitting on committees, having business meetings and helping in peer groups. She hasn’t time to wait around all morning.
When my friend needs to go to get a breast screen, will the other person have to come too and then they can go on to an event for the other person? It doesn’t work. Would you want a disabled stranger at your wife’s breastscreen? Would your wife want to go to the pub to drink beer and watch darts?
My friend is an intellectual and has been to a pub once in her life, once too many, she says. This new ratio does not work for people wanting to live their Ordinary Lives.
The NDIS is a world leading program that has helped so many Australians reach goals and live the lives they chose. Australia is being watched by world governments and their disability communities. I have friends overseas and seeing their problems, am so proud and grateful to live in Australia, where our disability community has been given the option of Choice and Control.
These amendments will not only take away our Ordinary Lives but cause heartbreak to Australian families and real mortal danger for some participants. Please protect the Australian Disability Community, we deserve Ordinary Lives.