Submission 2679
SUBMISSION TO SENATE ENQUIRY
NDIS FUTURE GENERATIONS BILL 2026
My name is and my husband is . Our son, , is 33 yearsof age. He has a rare genetic syndrome, Cohens syndrome, also known as Pepper Syndrome. This autosomal recessive syndrome is lifelong, has multiple comorbidities that are all a part of the whole syndrome. has autism, microcephaly, intellectual disability, neutropenia, retinitis pigmentosa (is now legally blind), low muscle tone and hyper mobile joints, and he is also more prone to autoimmune diseases. This means that he has many additional needs, and requires much preventative therapy to prevent further injury or disability.
, sitting in the lounge of his own home.
has been an NDIS participant since 2019. Since 2020, he has been living independently from his parents, in his own Department of Housing unit, with NDIS funding that has provided adequately for his support needs. I am 67 years old and my husband is 79 years old. Our age and health issues mean we are becoming less able to perform the needed hands-on daily care for our son. He has minimal other informal and family supports. Over the years of ’s life, we have learned that many informal supports do not address his needs and leave him vulnerable to abuse or exploitation. ’s future support has been an issue of concern for us for much of his lie. We rely on the continued support his NDIS funding supplies to allow his life to keep going now and in our eventual absence.
The changes created in the current National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 has the potential to completely dismantle the life we have crafted for our son, with no security of future funding. Our son does not cope with change easily. We have spent the past ten years working to establish our son in supported independence, a slow and managed transition, to ensure he could cope with the changes. He now lives independently, supported by carefully chosen staff who have been trained thoroughly to meet his everyday needs and higher support needs required by the health conditions that are part of his genetic syndrome. ’s supported independent living, as it is now, works. To contemplate that the work we have
Submission 2679
SUBMISSION TO SENATE ENQUIRY
NDIS FUTURE GENERATIONS BILL 2026
put into transitioning him slowly to independent living could be dismantled orsignificantly altered by the changes in this Bill is very concerning.
We oppose the changes outlined in the Bill. We recognise that budgetary restraint is necessary and that there has been some fraudulent activity that has robbed money from the system. However, the scope of changes in this Bill are far more wide reaching than addressing the financial burden. These changes will leave vulnerable participants and future applicants at risk of neglect, with no avenue of appeal and likely to return to institutional care, to continue to receive needed support within the constraints of their reduced funding. The Disability Abuse Royal Commission made clear that institutional care increased the likelihood of abuse for people with disabilities and made many recommendations to reduce the likelihood of future abuse. To return to this draconian model of care would be a step back to the worst possible outcome for the most vulnerable in our society.
The immediate 50% cut to social and community participation funding will reduce the hours of support for our son to do everyday tasks and activities. Being legally blind, intellectually disabled, and prone to wandering off and getting lost, he is not able to go out in the community safely alone. He cannot reliably follow “stranger danger” and road safety rules without help. He is prone to a flight response to sudden unexpected noise. He uses his community access funding to do every day activities: to go to the library, to attend medical appointments, to do shopping, to go to the gym, and to meet friends for coffee or to go ten pin bowling and to attend church services on Sundays. The NDIS does not fund his activities, but the funding enables him to do what is not possible without a support person. A very ordinary existence, with a couple of weekly activities that bring joy to his life. We estimate that he currently spends an average of twenty five hours per week out and about in the community. Halving that funding means half the number of hours he can safely be out in the community. Living with a disability is socially isolating without limiting community access. Twenty-five hours a week still means he is at home for the remainder of the week, at least eighty five daytime hours. We are extremely concerned this social isolation will increase the risk of depression and other mental health difficulties for our son, and other participants. This effect of isolation was clearly demonstrated in the wider community during COVID lockdowns.
The Minister’s new power to cut funding without an appeal is extremely concerning. The potential for abuse of this power is a frightening prospect for participants and their families. To stop all support for a vulnerable person leaves that individual at risk of neglect, at the very least. This means already burdened family members will again be responsible for maintaining a safe level of care. We have shouldered that burden for all of ’s life and find that load has also reduced our own ability to be contributing citizens, both economically and socially. We believe the right to an appeal should remain always enshrined in the law, and that appeal should not be decided within the same
Submission 2679
SUBMISSION TO SENATE ENQUIRY
NDIS FUTURE GENERATIONS BILL 2026
system that made the original decision. Other welfare recipients (eg Centrelink clients) have this option available to them. Could this precedent within the NDIS then be used to remove that option for other vulnerable cohorts?
The functional assessment requirement of the new legislation means that the same assessments already completed multiple times will be repeated again. has had
many functional capacity assessments completed already by therapists withqualifications and experience to accurately assess his deficits and then provide therapies to maximise his potential. He has had an annual functional capacity assessment report by an experienced occupational therapist for the past 3 years as part of the annual NDIS plan review process. Those repeated assessments are unchanged because he has a lifelong genetic condition, and his capacity is more likely to decline than improve. He also recently had a functional vision assessment, with the report being 22 pages in length. The cost of paying a therapist up to 10 hours every year, at a rate of $193.99 per hour, to describe the unaltered level of incapacity is just a waste of money. The sensible approach, once permanent incapacity has been proven, would be to avoid ongoing requirement to prove the need for support, unless a notable change occurs. This could also mean that a funding plan could be longer term with cost-of-living increases built in, in a similar fashion to the indexation for pensions. This would also mean that the NDIS planners workload would be decreased, addressing the current backlog in planning reviews. The cumulative savings of this commonsense approach would be significant. Almost $2000 per year per participant without reducing the hours of support provided to the participant.
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Areas not addressed in the new Bill that we have observed to need improvement are as follows: NDIS pricing guide, the top limit of which has become the default cost for charging participants. Many therapy businesses do not charge other members of the public at the same rate as the top rate in the price guide. There needs to be an appendix to the guide which outlines levels of care and higher rates for more experienced and complex care. The same is true of the hourly rates for support workers. The expectation of wages higher than experienced registered nurses has become commonplace. The difference between a new employee who has no experience and a support worker who has years of experience, specific training and some formal qualification should be clearly available. The price guide also needs to give clear information about all that must be covered in that hourly rate, ie the administrative costs such as tax, superannuation and insurance and to whom that component is paid in the plan managed, agency managed and self managed models of support. It is of comfort to us that there are now audits of
disability providers, including supported independent living providers. The
requirement of registration for all providers should also be a necessity, to ensure a quality service with uniformly high standards.
Submission 2679
SUBMISSION TO SENATE ENQUIRY
NDIS FUTURE GENERATIONS BILL 2026
The automation of decision making for plan funding, using algorithms, and then removing the right of appeal on those decisions will leave participants unable to question the decisions, unable to explain why certain supports should be reasonable and necessary in their situation, leaving them voiceless and defenceless. This gives the NDIS ultimate control over their lives and the participant and their advocates have no avenue to seek to have this decision reconsidered. This is a far worse situation than prior to the advent of the NDIS. When we consider the level of detail in the recent functional capacity and functional vision assessments undertaken for , we find it difficult to believe that a clear picture of ’s needs can be matched by an assessment completed using computerised automation.
Please do not support this Bill, which would completely destroy the original intent of the NDIS. There are many other avenues to address the economic management of our country responsibly without punishing those least able to stand up for themselves.
Thank you for considering our submission