National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 594
I am a retired school teacher who has had many years of experience supporting children with special needs. My grandson was diagnosed with autism at about the age of three. He was very fortunate to receive NDIS funding and my daughter has worked tirelessly to build a team of therapists around him who have supported and helped him negotiate a world that every day is strange and difficult. The benefits of one- to -one early intervention, with therapists that he now knows and trusts, are clear. Without doubt this has contributed to the progress he has made. However, autism is a dynamic disability. Daily life changes affect my grandson way more significantly than many other children. Yes, he is doing better but that doesn’t mean continuing support is not essential going forward. It is important that this support is delivered in a way that works best for him and not as a result of a limited bureaucratic decision. If someone with diabetes is feeling better because of correct medication, do we take it away? Do we take insulin off the PBS and make patients pay for it themselves because they have improved? Do we make patients with diabetes try a range of medications that may or may not work before they are eligible for insulin? Mark Butler commented that the NDIS is for those with a lifelong disability. Just as Diabetes is a lifelong illness, Autism is for life. The treatment may be different but it is just as crucial.
We are trying not to worry about the upcoming changes to the NDIS as they will potentially affect the funding my grandson receives. We cannot help but be concerned about how these changes will affect his life going forward. The rate of mental health issues and suicide is known to be higher for those with autism. Psychologists are therefore an absolute necessity. A necessity that for us comes at a cost close to $300 per hour, and one that we will not be able to afford without NDIS funding. For all children with autism, funding for early intervention is an investment that in the long term will avoid pressure on an overworked health system. The following statement on the Greens’ website speaks to the financial benefits of providing funded support for those with a disability… ‘evidence shows that every dollar invested in the NDIS returns $2.25 to the economy – because getting the right support means more disabled people can work, increase their hours, and rely less on other supports over time.’
However, of far more significance than the economic advantages such support brings, are the human benefits. For those living with a permanent disability, this funding provides opportunities to achieve some semblance of ‘normality’. It helps to develop self-confidence and self-worth, empowering them to live each day with respect and dignity. It helps their family and carers to feel that they are not alone. Surely these factors should be of ultimate consideration in any decision making process, but through no fault of their own, NDIS participants have become the victims in this situation. The government initiated this programme to support people with a disability. Participants have benefited from consistent, funded support in their daily lives, which now may be taken away. Effective therapies that have become relied upon are now being threatened. Contrary to the government’s claim, there is little ‘choice and control’ for participants in any existing or proposed NDIS framework. It doesn’t seem right or reasonable that funding approval and allocation is decided by someone far removed from the situation. Participants and their carers are capable of deciding what therapies are needed and most successful and should be given the control to do so. Targeting the fees charged by service providers would seem to be a way of managing expenditure. Providing proof of payment for all services used or products purchased by all participants would result in increased accountability. As a simple example, the NDIS portal has only recently required the upload of receipts for processing claims over $200 for self -managed participants. Surely this should have been a mandatory requirement from the very beginning.
A great deal of anxiety around the current announcement is because of the lack of detail. Every government is adept at making sweeping announcements. The media throws some breadcrumbs of information to try and answer the public’s questions and those affected are unfairly left in a state of flux and confusion. The
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 594
presentation and question time at the National Press Club Lunch did nothing to shed light on the situation. If we have learnt anything from the pandemic and ‘The Voice’ referendum it is that people need to know the plan to get on board. Actually, they need to know there is a plan and information about what it will look like. For me, and probably for many, this means knowing answers to a myriad of questions such as…Who were the people that made these decisions? Do any of them know firsthand what it is like to care for a person with a disability? Was anyone on the frontline questioned about their experiences regarding their disability and the NDIS? Have all other avenues of cost cutting been explored? Have other avenues of revenue raising been explored? Why are some service provider’s fees so high? What is the ‘Thriving Kids’ programme? Exactly when and how will it be implemented? How will my child’s life be affected? Making the announcement without a plan, without being prepared to give details, is poor leadership. It leaves those impacted anxiously worrying about what it will mean for their family situation and with little faith in the government to carry it out effectively. 24/05/2026