National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 96
My name is , and I work for a local council in Melbourne where I support individuals and their families with end-to-end engagement to in the NDIS space. I have done this role for 10 years from the rollout of the NDIS.
My experience in the sector, however, expands to 1983 when the initial process of deinstitutionalisation began and the move to person centred, generic support for people living with disabilities and the importance of individualisation in that support. I have worked in the sector as it moved from block funding to an organisation for X number of participants where the individual did not matter just getting the “vacancy filled to use the funds”.
This then moved to the same block funding being “attached to a person” so that if they moved from a service provider their funding would move with them. No control over that funding however it was at least attached to an individual and a perceived need. This included families being told that their family members were “successful in having funding for supports” without any education on the amounts or flexibility of those funds.
Then we began to hear rumblings of the NDIS and as the preparation for the rollouts began we started to analyse the actual needs of each of the people we were supporting and the differing needs that each were requiring in the same setting and even with the same diagnosis. The perceived need for support that had been funded at “you have cerebral palsy, so you get a level 5 package because you are a little more complex than that person who has cerebral palsy who needs a level 4 package”, suddenly began to be viewed as “you need assistance with that and that will require a support person for X amount of time” The opportunities began to be clear that those people who had just been a number that filled a “package” suddenly had the opportunity to expand their horizons and increase their opportunities to do new things in new environments because they had the support to do it.
The Minister spoke of bad support workers in his speech, however I remember at the time of these minimally funded packages a support worker with 20 years experience informed me that a person we were supporting needed a new wheelchair because she had been sucking on hers. The stitching on her chair had begun to come away and there was not sufficient staffing resources to provide activities of interest and broaden her horizons so she was not bored, but we could refer to an OT to get a new chair because she had sucked the old one. The difference in that lady’s $34000 day service package and her actual need to participate in activities she enjoyed including hoisting support for personal care, individual support to dress and undress to enjoy a swimming program, as just one example, was massive and the increase to her funded support meant the difference to her quality of life, and that cannot be measured in dollars! Unfortunately, the fact is dollars for support are the things that made the difference and need to continue to do so.
At the time of deinstitutionalisation there was a huge amount of money that needed to be spent and there were many things that were learnt from the process. What would not, and should not ever be changed, regardless of the cost of that exercise, is the amazing differences that the outcome of leaving a controlled setting with no choice or control on your daily activities, the opportunity to choose the people who supported you or the times you did things throughout your day, have made to the people who were forced to live in those circumstances. Ironically, as I, and many others, supported people to leave those institutions I believe I heard less complaints from the governments on the spending involved than I hear at this time with regards for the changes in the NDIS.
The changes that are being proposed in this new bill makes me repeat what I have said many times in the year I have worked in the NDIS space and that is “disability and the support required for the people living with a disability is not a new concept. It was not invented by the NDIS” and many of the things that the governments are attempting to introduce have been done in the past, been found to not only be unsuccessful but have been clearly documented as dangerous and disrespectful to the Human rights of those people and the people who support them. Every disability Royal Commission has
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 96
identified the need for individual respect of the person, and their supporters, who understand their needs and the level of support they require. Veiling this in disrespectful legislative language like “respecting the role of families in the support” only to push back on carers, who have given up their lives to provide support, to provide more support so the government can save money, is an archaic attitude that has been proven to not keep people with disabilities, their carers or other supports safe.
I am not so naïve with all this experience that I do not understand that there are needs to support some people differently in the disability space however there have been mistakes made by governments which need to be recognised and corrected to ensure there are appropriate respectful supports to those people who may not fit the mould of who the government believes should get NDIS support.
We have seen the disbanding of successful programs because that funding was moving to pay for the NDIS, which resulted in the loss of many amazing staff. This workforce is not sitting waiting for the Government to call them back now they realise the mistake they have made. This need a concentrated plan for, not only the types of programs that are required, but for the support to the workforce that is needed to respectfully support those people who are deemed ineligible for NDIS.
At the time of the initial rollout of the NDIS, the people in those programs had to prove they were not eligible for the NDIS before they could receive the remaining limited funding in programs such as the Home and Community Care program. Of course, they chose to get the evidence to go to the NDIS the government made it the Oasis in the Desert, The Lifeboat in the Ocean, not the people needing supports!
If there is not collaboration with the disability community and those who have seen these mistakes constantly made in the past, we will see more and more participants experiencing the dangers to care that resulted in the need for institutional setting to be closed, that have been identified in Royal Commissions and the deaths and harm that have resulted in the NDIS space by badly trained, inexperienced agency staff. The evidence is there, the outcomes are clear, the costs are clear and the bill that has been presented will only repeat these mistakes and cause more harm.