National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2014
The NDIS has been life changing for me and my children. I have multiple disabilities, and care for my 3 children who also have multiple disabilities. I do not have the capacity to care for my own daily needs, let alone those of children who have additional needs beyond that of standard parenting requirements without significant support. I have stared down the barrel of relinquishing children to state care before, and it terrifies me to think that I might have to consider that again if our disability supports which enable us to live independently in the community were to be reduced or removed. I used to be completely bed bound, now I am able to go out and live a more engaged life, I have been able to access further education, and I have hope that I will one day be able to even run my own business.
The proposed changes to the act have not been made in consultation with the disability community, and they have been rushed through without appropriate time for the community to even process and understand fully what the implications might be. Even the timeframe for this submission has been so short that I will struggle to get this submission completed and uploaded by the deadline. I will only be able to do that with the supports I have available to me through NDIS. So I will spend valuable time with my support workers doing this submission, rather than many other jobs I need to be getting on with. The amount of time I spend in the administration of being a disabled person is a whole issue tied up with the NDIS and the many changes that get swept through. We should be operating on a nothing about us without us model. We should be centring disabled voices. It isn’t us who are wasting money or misappropriating funding. We are just trying to live normal everyday dignified lives. And the irony is that each one of you reading this is only one butterfly wing flap away from becoming disabled yourself, or having one of your family disabled and being thrown into carer mode. Social support for disabled people is a sign of a good society, a good economy.
The changes proposed will cause irreparable harm to our community and we will see lives lost. Our lives should not be collateral. I’m disgusted that our government sees me and my children as disposable. All this talk of the economic concerns, and yet nowhere are you acknowledging the fact that every dollar spent on NDIS returns over two dollars to the economy.
I don’t want to go back to a life where I am stuck at home watching daytime TV. What a sad state of affairs that would be. I want to have equal access to society, to join my friends in our reenactment group, to attend concerts, ballets, theatre shows. I want to go to dinner and attend my friends’ weddings and birthdays. And as a disabled person, I need support to do that. Sometimes I require someone to drive me, sometimes I require someone to attend with me to assist me to access spaces, as guess what?! We don’t live in a magically accessible society where I won’t get stuck on lips that are too high for my wheelchair, where I can reach the food truck to order and pay for my dinner, where I can open and close doors myself. And even if spaces were magically physically accessible, that doesn’t mean I won’t spontaneously faint and require the physical assistance of my support worker, or that I will have the capacity to speak for myself! I have every right to go out and about in the community as every able bodied, eurotypical person.
Removing social and community supports because of some offensive narrative that tax payer dollars are funding my haircuts or lunches truly enrages me, and every other disabled person I know. I’m paying for my concert ticket, not you. You aren’t even paying for my support worker’s ticket because they get in free with my companion card! Your tax dollars aren’t paying for my spa retreat, but they are paying for my disability support worker to take me there and help me access the space and liaise with the workers to ensure my safe participation. Like, get with reality.
Also, I have seen so many people lose access to capacity building supports such as psychology and told to get a mental health plan and use Medicare. Again, read your own legislation and funding guidelines. Mental health care plans are for MENTAL HEALTH - not for disability related support. I am an Autistic person and I require specialised psychological supports to help me navigate the world and help me learn new ways of supporting myself, engaging in relationships, etc. This isn’t mental health related. But you know what? With all of the garbage the government keeps putting us through, I might need a mental health care plan too, to deal with the distress
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2014
carried out by never knowing if my life is about to be turned upside down, leaving me unable to care for myself and my children, unable to live a dignified and independent life. My capacity building supports have enabled me to grow and develop skills over the years. They have not cured my Autism or made me not physically disabled. They have allowed to me to trial and access assistive technology. They have supported me to trial different structures for my daily life, as well as how to utilise support workers to best support me.
One of the requirements for access to the NDIS is that my disability be permanent and stable, that I have tried treatment options to magic myself better. Now, there are plenty of quacks out there who might suggest all manner of things to heal me. Where is the line? Should I spend $100k on a trip to Bali to a yoga retreat and a vegetarian diet? Or will you listen to the actual treating practitioners who are experts in their field and in our particular disabilities and conditions when they write your 40 page reports you demand but don’t read?! I’m never going to be neurotypical. My genetic collagen disorder will never go away. I shouldn’t have to continue to spend tax payer dollars for 40 page report you don’t even read to tell you the same thing.
I have been operating off a 5 year old plan which has had no funding increases to deal with CPI and the fact that support worker rates and allied health rates have increased, but I am too scared to ask for a review for fear that my supports would be reduced or removed. If anything, I need more supports than what I currently have. My functional capacity is really low (if you read my reports, you would see this). I should have people coming to provide care every day, but I can’t afford that, especially on weekends, so I go without.
The only misuse of funds I have seen is from providers who think they can charge a $500 onboarding fee when you engage their services. What for? Or the independent support workers with no experience or credentials who see they can charge upwards of $70/h to provide “support”, meanwhile making things harder because they have no idea what they are doing. Now, I don’t think that all independent support workers need to have a disability support qualification, and I do believe participants should have the right to choose their workers. However, there has been a rhetoric that the NDIS is open for money making, and then when it comes to the changes, instead of chasing down rorting in providers, there’s an attack on participants. Participants are hurt by mismanagement of their funds.
There are no alternative community supports anymore since NDIS. Most of us don’t actually have informal supports who can meet our needs, and many of us are simultaneously considered informal supports ourselves. For eg. I have been told many times that I should be providing x, y, z for my children, or that things are parental responsibility. I don’t have the capacity to provide myself with a lot of those things, and I don’t think all of you who are parenting non disabled children have a clue what the difference between parenting and caring is! I would love to just parent my children. Unfortunately parenting and disability care and support get melted together when you have children like mine.
In short, when will you listen to us?! You’d probably save a whole lot more money if you actually consulted and employed us instead of sidelining us, since money is all you seem to care about.