Personal Submission to the Senate Inquiry into the
National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Table of contents About my son……………………………………………………………………………………………………………2 The day service my son attends — and what we stand to lose………………………………………..2 Planning paralysis — our son’s path to independence, halted …………………………………………3 On the government’s assurances — and their limits ………………………………………………………4 What I am asking ………………………………………………………………………………………………………4
I am writing as the parent of a 23yr old son with Angelman syndrome who requires very high levels of support for every aspect of his daily life. The government describes the proposed NDIS reforms as necessary to protect the future of the Scheme. I am deeply concerned that they will come at the expense of people like my son who rely on the NDIS today. The cumulative effect of these legislation changes will be to make his future, and ours, profoundly less secure rather than more.
About my son
My son has Angelman syndrome. He is non-verbal, has epilepsy, is incontinent, experiences significant sensory issues, has a severe sleep disorder and requires support with every activity of daily living. He cannot be left alone and requires support 24 hours a day, seven days a week. For most of that time, at least 18 hours per day, he requires dedicated one-to one support to remain safe and receive appropriate care.
My son cannot safely access the community without one-to-one support. He requires hands on assistance with walking and with the use of his walker outdoors. Without support he is at risk of falls, injury and wandering. This risk exists not only in the community but within our own home. Recently, he woke during the night, entered our laundry and rubbed laundry powder into his eyes. The incident required an emergency department visit. Due to his disability, distress and sensory sensitivities, six people were required to safely restrain him so that medical staff could administer a sedative and examine his eyes. This occurred despite the supervision and care we already provide around the clock.
My son also has no concept of personal boundaries and will enter other people’s personal space. He may react physically when people approach his face and has been injured when others have reacted negatively to his behaviour. Without dedicated support, these situations become far more likely and far more dangerous.
Even in indoor group settings, my son requires one-to-one support to participate. Without it, he cannot engage in activities, develop skills or interact meaningfully with others. He would become frustrated and disengaged, and his behaviours would escalate. In practice, a reduction in Social and Community Participation funding would result in exclusion from community life, not inclusion in it.
The day service my son attends — and what we stand to lose
My son currently attends a small, high-quality day service that has been providing excellent person-centred support for over 50 years. Some of their clients have been with them for decades. This is not a large institutional program, it is a community that knows each person individually and has built genuine relationships over time.
At this service, my son has been steadily building skills and working toward goals that most people would never have thought possible for someone with his level of disability. He has been exploring open employment opportunities, something no government employment agency would be willing to consider for him. None of this would be possible without his one to-one funding, which allows staff to work with him individually, manage his behaviour safely, and support him to engage in ways that a group setting simply cannot achieve.
The proposed 50 per cent reduction to SCCP funding places this service in an impossible position. They rely predominantly on SCCP funding. If the majority of their clients receive a 50 per cent cut, the service will not be financially viable. An organisation that has served this community for half a century, and the individuals who have been part of it for much of their lives, faces closure not because it has failed, but because the funding model beneath it is being cut in half.
If this service closes, my son will need to find an alternative. Small, person-centred disability services across Australia are facing the same pressures, and if his closes it is unlikely that there will be an equivalent alternative service for my son. The likely outcome is that his only option will be large, commissioned organisations that do not have a strong track record in person-centred care. For my son, who relies on knowing his support workers, on consistency, on trust built over time, a forced transition to an unfamiliar environment with unfamiliar staff would cause him significant distress and almost certainly lead to behavioural deterioration.
Planning paralysis — our son’s path to independence, halted
A few years ago my son was assessed as being eligible for Specialist Disability Accommodation (SDA) and Supported Independent Living (SIL) funding. This was a significant milestone. It was recognition that he has the right to a life beyond the family home, and that the supports exist to make that possible.
Earlier this year, we were actively working toward his transition out of home. We were looking for a suitable property nearby, beginning to think about building a support team around him, and preparing him, and ourselves, for what would be the next chapter of his life. This was not easy. It was emotional, complex and required enormous planning. But we were doing it because we believe in his right to live independently, and because we know that as we age, it is the right thing for him.
The proposed legislation changes, in amongst all of the other recent NDIS reforms, have brought that process to a complete stop.
We cannot in good conscience pursue an SDA property, invest in building a support team and prepare our son for a major transition, only to have his SCCP and/or SIL funding cut, his support ratios changed, or his provider/s forced to change how they deliver care due to a new commissioning model. Moving a person with Angelman syndrome, who depends on familiar environments, familiar people and consistent routines, is not something you can simply undo if the funding changes beneath you.
The specific risks we cannot plan around include:
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What happens if his SIL funding support ratio is reduced to a level that makes safe one-to-one support impossible
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Will we have to move him to a new SDA home with a new “commissioned” provider and have no say over who he lives with or how his care is structured
- How will we manage if his support team is disrupted mid-transition, or after he moves in, due to provider changes driven by the new commissioning model These are the practical consequences of legislative changes that are made without any guaranteed protections for people with the highest and most complex support needs.
The result is that for now my son remains at home with us, at an age when he deserves the opportunity to build his own life, and we cannot plan forward. That uncertainty has caused our family profound anxiety and significant stress. It has taken away our ability to imagine and prepare for his future. And it has taken away his opportunity to take a step toward independence.
On the government’s assurances — and their limits
I cannot reconcile statements made by government representatives, including the assertion that they are “not pulling the rug out from under anyone”, with proposals that would reduce SCCP funding by around 50 per cent for people like my son.
Government representatives have suggested that participants can use other funding categories flexibly to make up any shortfall. The government has also said that participants receiving Supported Independent Living 24/7 supports, and those using SCCP for employment, will be exempt from the mandated cuts. However, for many participants and their families these concessions will not provide the protection it appears to offer.
Many adults (18+) with Angelman syndrome live at home. They all have 24/7 care needs. Not all will have a SIL package. Their care needs should be recognised in the same way as a SIL recipient and come under the exemption as currently described. The hours not funded by the NDIS are provided by parents, at no cost to the Scheme, already representing a significant saving to government. If the exemption is applied only to those with formal SIL funding, then for participants who require 24/7 care but live at home, it is family that absorbs the unfunded hours. These participants may receive no protection at all.
Consider what this means in practice. If a participant uses SCCP funding to attend a day program five days a week and requires one-to-one support, this arrangement allows both parents to work. A 50 per cent cut to that funding could make the usual attendance at the day program unviable, as the day service would not be able to provide safe support at a 1:2 ratio. If the participant can no longer attend or has to reduce their hours due to the funding shortfall, an added consequence is that the parents may not be able to work. The financial and personal consequences would be immediate and severe.
I do not know how the government intends to identify which participants qualify for the exemption, how will families be given the opportunity to demonstrate that their circumstances meet the threshold, or what safeguards exist when a decision cannot be reviewed. Plan reviews will now be “plan renewals”, meaning that until people transition to the new framework, there may be no formal mechanism to present evidence, challenge a decision or demonstrate the real-world impact of a cut. Where are the safeguards in that process? How will participants be able to show that a 50 per cent SCCP reduction is not a modest adjustment but has significant consequences?
These are practical questions with potentially life-altering conseqences that neeed to be answered.
What I am asking
I support efforts to eliminate fraud, waste and exploitation within the NDIS. Every dollar lost to fraud is a dollar that should be supporting people with disability. I understand the importance of the Scheme’s long-term sustainability.
But people with profound and lifelong disability should not be asked to carry the burden of achieving savings targets. Families like mine are being asked to trust that future foundational supports will fill the gaps, but those alternatives do not yet exist, and reductions to participant funding are being legislated before they do. That places all of the risk on the people least able to absorb it.
I ask the Committee to address the following questions:
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How will these reforms protect participants with the highest support needs? How can a person with my son’s level of disability safely absorb substantial reductions in support funding without compromising his safety, health, dignity and ability to participate in the community? How will consequences to the family and informal supports be considered?
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How will the legislation protect small, person-centred services that rely on SCCP funding, which cannot survive a 50 per cent funding cut and whose closure will leave their clients, including people who have attended for decades, with nowhere to go?
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How will the transition to a commissioned or block-funded service model protect individuals who depend on one-to-one support, familiar workers and consistent environments, and who have no means to advocate for themselves when those things are taken away?
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How will families who are in the process of planning for a loved one’s transition to independent living, families who have followed every process and waited years for eligibility and funding, be protected from having that future dismantled by legislative changes made before they had the chance to move forward?
My son has a right to safety, dignity, community participation and the opportunity to build an independent life. These reforms, as currently proposed, put all of that at risk. I urge the Committee to recommend that they not proceed in their current form.
Submitted by a parent of a person with Angelman syndrome