Submission 2168
Dear Committee Members,
I am the carer of an adult NDIS participant with Down syndrome and complex care/high support needs. She is unable to remain in the home alone or to leave the home unassisted. She was transferred to the NDIS as an adult from the old NSW ADHC system.
These changes to legislation and announced cuts should not be passed by the parliament. There are too many cuts and they are too chaotic. There has been no proper, thorough or detailed consultation on these changes, which appear to undermine the principles of the scheme and attempt to revert to failed systems of the past.
The proposed decoupling the NDIS legislation from UNCRPD principles. It is absolutely critical to understand the significance of this proposed legislative change and crucial that it is rejected. The damage from this proposed change cannot be overstated. Georgia Van Toorn and Helen Dickinson have stated that ‘The changes emphasise financial sustainability, while removing references to United Nations disability rights principles centred on personalised support, choice and independence.’ (https://www.unsw.edu.au/newsroom/news/2026/05/the- government-plans-to-tighten-ndis-eligibility-heres-whats-likely-to-change) This proposed change undermines the fundamental basis of the whole scheme. I implore the parliament to reject these parts of the proposed legislation. These UNCRPD principles are the only substantial protections disabled people have from being segregated and institutionalised again. This legislation also sits in opposition to the findings of the Disability Royal Commission 2023 on the isolation and segregation of disabled people. (https://www.theguardian.com/australia-news/2026/may/23/albanese- government-ndis-legislation-cuts-changes-reform-australians-more-isolated)
Ageing Parents: The case for Grandfathering These changes will have severe impacts on both the disabled and their ageing parents. Ageing parents of Down syndrome adults, who are subject to premature ageing, should be given a carve out from much of this legislation. Parents have made personal and financial decisions relating to the care of our loved ones based on over a decade of the NDIS, but now the world is being turned upside down. Why are we not worthy of the same respect regarding grandfathering that is being shown to property investors in relation to the current changes to the CGT discount? It is well documented that unpaid carers have poorer overall health outcomes than their aged-matched peers. I have multiple health conditions that require daily management, and if these changes are legislated as proposed, including an
Submission 2168
automatic funding cut by ministerial fiat, I will have more unpaid care thrust upon me. My life basically comes down to this: when my daughter does not have funded supports, I am her support. In other words, simply put, I am forced to live under curfew conditions.
These proposed changes are causing me incredible anxiety. It feels like families with adults with Down syndrome like mine are being singled out and punished. That people with Down syndrome stand to lose the most under these proposed cuts, is completely unconscionable. The idea that parents should just do more, after we’ve done so much for years, is just indescribably overwhelming!
Why the old system was bad.
Seriously, we’ve already been through the horrors of state directed block funding (now rebranded as Foundational Supports). That funding simply didn’t work for people with disability and their families. It was routine for parents of adult children to have to forgo work or their own hard earned time in retirement to look after their adult children.
Block funded rationed supports used to look like this (just one of many, many examples): a family would apply for respite and providers would choose which applicants they would support. The family would then be informed if they were successful or not. In our case we were rejected on a number of occasions even though I was a sole parent of a teenager at the time. Why does the government want to revert to such a system where providers will undoubtedly engage in the same patterns of behaviour? Where providers get to choose who they support? There are many more examples of the failures of block funding This was the old rationing system of supports that the NDIS was introduced to fix; it was the promise to people with disability and their families that such practices would cease.
For what possible reason is the current govt trying to return to such a model that was a proven failure? As Julia Gillard stated in her speech introducing the NDIS Bill: ‘It will bring an end to the tragedy of services denied or delayed and instead offer people with disability the care and support they need over their lifetimes.’
Community Participation Funding Cuts: The pursuit of a lazy fiscal
solution rather than an actual solution to the problems of the scheme.
These proposed cuts are just lazy. They also represent a hostility towards a whole group of participants in the scheme, namely participants with cognitive impairments, in particular Down syndrome and those with significant sensory disability (blind or deaf). Does anybody in Australia think that these are the groups that should bear the severest cuts? Most Australians want to see people
Submission 2168
with Down syndrome out and about, supported in and by their community, not targeted by the executive arm of government.
See Guardian article https://www.theguardian.com/australia- news/2026/may/20/australians-with-downs-syndrome-among-those-to-suffer- most-from-proposed-ndis-cuts-government-analysis-says
The above newspaper article identifies that these funding cuts will disproportionately affect people with Down syndrome because of the way the NDIA structures their plans. There is the threatened reduction in SCCP support that completely overlooks the fact that, in many cases, the separation of Daily Living funding and SCCP funding is a distinction without difference. Both are core to participant support, when someone cannot be left at home alone and cannot leave the house without support. In other words, such a person really needs one category of core support, because the support is required in all facets of life, both in and out of the house. The division of core supports into Daily Living and SCCP is arbitrary and bureaucratic. The reality is that for many people these categories interdependent.
Many families are just terrified by the prospect of the limitations imposed by such massively reduced support. Foundational supports for children, Thriving Kids, doesn’t exist yet but is supposed to be up and running before children are transferred to that scheme. Yet for almost 400,000 adults in receipt of SCCP funding there is no alternative scheme identified by government, let alone a scheme ready to be accessed. It is causing incredible distress and anxiety in the community of people with disability and their families.
The SCCP supports in fact allow people with disability to be supported in voluntary work, as well as meaningful, engaged occupational activity and study. The SCCP also covers support to maintain health and wellbeing, attend appointments, undertake daily physical exercise that is suitable to need, and to design and manage such. These cuts will severely diminish the health of any participants subject to them. A cut to my one category of Core Support is a cut to overall support which will diminish the ability to do many things that are core to functioning. There has been recent public discourse that tries to diminish the SCCP supports as some kind of frivolous leisure activity. These kinds of attitudes and statements are truly strange and unwelcome, as it devalues people with disability and attempts to create a stereotype that risks social cohesion for this community and their families.
How to start reform of SCCP funding: A Consumer’s point of view
The system must be easy to navigate for consumers. So, return to the hourly rate, which should include all the on costs!
Submission 2168
Previously, the hourly rate was always considered to include all the on costs. The government should return to this formula as this would empower participants by providing a meaningful consumer protection measure as well as reducing inefficient bureaucratic administration costs. All of these strip consumers of their capacity to negotiate and add to the burden on carers by having to deal with overly complicated invoices. Some invoices from registered providers have 10 line-items for a five hour shift!
All members of the committee should read the Carers Australia document https://www.carersaustralia.com.au/wp-content/uploads/2026/05/Carers- Australia_Integrity-of-the-NDIS- submission.pdf?apcid=00685881ffbb16ae6c55b200&utm_campaign=cnn- 150526&utm_content=cnn-150526&utm_medium=email&utm_source=ortto)
If the government wanted to seriously address the problems of spending within the CSSP category of the scheme, it should look seriously at reducing the on costs that have been added to the hourly rate in the category. The government has introduced billable items that allow registered providers to charge: 1. Centre Based Capital Costs - billed at $2.59 per hour, even when the participant is not in the Centre! ‘When a support is delivered partially in a Centre and partially in the Community, and the Centre is available at all times during the support if required, then providers can claim up to the price limit for the relevant Centre Capital Cost support item for the entire period of the support.’ 2025-26 NDIS Price Guide p.36 In practice this means that the registered provider is able to charge the full amount even when the participant does not go to the centre for one minute during the whole shift, simply because the centre was available! 2. Non-Face-to-Face Time - just impossible to work out if this is value for money. 3. Provider travel – this is currently being used by some registered providers for travel to the participant’s home. But it should be restricted to the provision of services that are of short duration, for example one hour. This is the traditional understanding pertaining to domiciliary visits to facilitate multiple services to different people in one day. 4. Non-Rebatable Material or Resource Fee On top of the above, some registered providers of community supports are also charging non-rebatable ‘materials or resources’fees. Surely if a registered provider is providing a day activity program such materials should be included, and should be considered a normal business expense. The government needs to be clear about co-payments charged by providers, including when they are outsourcing their scheduled activities.
Experiences with Registered and Unregistered providers Unregistered doesn’t mean unqualified.
Submission 2168
The following reflections pertain to the use of independent support workers compared to employees of registered NGO providers. The independent support workers are often sole traders, charge less than the NDIS rate and do not include any of the on costs that registered providers are allowed to charge. In our family’s case this represents high quality service and extremely good value for money.
Currently our experience is that our independent workers are far more qualified (holders degrees and decades of experience in the sector) than any of the workers in the registered provider sector, where there are no minimum qualifications required, not even an HSC. The independent support workers provide many families with greater flexibility and responsiveness.
Nobody objects to independent support workers having some kind of registration process, but it should be one in which the fee structure recognises that they are sole traders and not large corporate or NGO charitable organisations with multimillion dollar turnovers. The government should seek to build and improve the network and supply of independent support workers to fill gaps in service provision that exist in thin markets.
Registered providers also have an uncanny knack of charging the maximum NDIS rate for everything they possibly can and view themselves as immune from any negotiation on price. They often reply “The NDIS says we can” or “Our pricing is compliant”
But if everyone is going to be a registered provider, then no participant can buy a mainstream support anymore. In the early days of the NDIS, this ability to buy mainstream supports was always designed to keep prices down, because the mainstream supports were supposed to be blind as to whether the person had NDIS funding or not, in order that everybody would pay the same price.
Women as the bearers of the cuts
Has there been any substantive economic modelling undertaken by the government on the impact of these proposed cuts? It seems to me that the cuts will cause an inevitable rise in unemployment and underemployment. Fewer funded hours in plans means less work for support workers (predominantly female). Similarly, the informal unpaid caregivers (also predominantly female) will also be negatively impacted by having to increase their hours of unpaid support, which can only mean reduced capacity to work, study etc. Importantly participants will also be unable to participate in paid and voluntary work. Has the government really abandoned its commitment to increasing female economic participation for NDIS participants, support workers and unpaid
Submission 2168
carers? An article by Tegan George estimates the job losses caused by the proposed cuts will be in the order of 200,000: https://thepoint.com.au/news/260521-need-does-not-disappear-advocates-warn- dis-overhaul-risks-repeating-past-mistakes
This is another significant reason why parliament should reject any cuts to SCCP funding.
Thanks for your attention,