National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2374
Submission to the Inquiry: The National Disability Scheme Amendments (Securing the NDIS for Future Generations) Bill 2026
We are writing as older parents of an adult child born with a rare syndrome, Angelman Syndrome, resulting in profound and lifelong disability. As a result of Angelman Syndrome, our son has required constant supervision, overnight care (the syndrome presents with a severe sleep disorder), medical management including seizures and communication support.
Over 16 years ago, we made a submission to the Standing Committee on Family, Housing, Community and Youth Inquiry into better support for cares, delivered as a final report “Who Cares….? Report on the inquiry into better support for carers”. Our submission was even quoted in the final report about the impact to the everyday cost and impact of living as a carer of a child with severe disability.
The introduction of the NDIS gave us hope that we wouldn’t face a constant battle for supports or the inevitable health burnout of caring for our son. Politicians and media assured us that elderly parents could pass away in peace, knowing their children wouldn’t be left in the institutional settings of the past.
Through determination and adaptation to the scheme’s many changes, we’ve kept our family together. Thanks to the NDIS, our son has enjoyed a quality of life that was impossible under previous state-based systems. We’ve always accepted the financial burden of supporting him and planned our superannuation to provide for three people, not just two.
Now, as we face the reality of no longer being physically able to provide daily care, we are exploring options for our son to live independently. However, the proposed NDIS changes fill us with fear for his future and ours. These changes could force him into a group home with low support ratios, leading to a diminished quality of life and life expectancy. It feels like we are being pushed back to the starting line, with our son at risk of being isolated in a home where he cannot engage with the community or participate in the activities, we’ve worked so hard to make possible for him as a 23-year-old young man.
We are already struggling within the existing scheme rules to get the support he needs to be safely cared for outside of our home. We have had to consistently and carefully reprove the level of disability to meet the evidence required to justify the support he requires without success. Currently the burden of proof is shifting to evidence that lower supports do not exist posing life threatening risks to him as evidence of dysphasia, seizures and complex bowel issues by qualified practitioners does not seem to be sufficient.
The legislative changes proposed pave the way for further reductions that will potentially increase the burden of care for us as “informal supports”, reduce social and community participation and leave him virtually trapped in a home where supports are unable to take him out into the community. The general community play a critical safeguarding role to ensure he is not being neglected or abused. He needs to be visible in the community for this to occur. He does not have the capability to phone anyone, to get himself into a wheelchair and go out into the street. The recent Royal Commission into Violence, Abuse, Neglect and
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2374
Exploitation of People with Disability showed us what is still occurring for vulnerable people with disability.
The proposed new NDIS powers will allow a Minister to cut funding for some supports at will. With all relevant evidence, we have been unable to secure appropriate funding to ensure he is not supported by a 1:3 ratio for the majority of the time – how will this work if there are future cuts? If he indeed survives in such a low care ratio.
How can we be confident that he will not become a case study in a future Royal Commission about system failures for our most vulnerable? How can we trust that these legislative changes won’t be used to cut essential services and supports in the future? The NDIS was built on the promise that elderly parents could find peace knowing their loved ones would be cared for after they were gone.
Our role as carers has come at a significant cost to our health and well-being, leading to chronic physical and mental exhaustion, heart disease, hernias, and recurring health issues. While we both work, we also take on a second, unpaid job as full-time support workers, including active overnight shifts, seven days a week.
Issues of concern for us include:
Expanded Definition of “Parental Responsibility”
The new Bill introduces a legal presumption that parents are responsible for providing “substantial care and support” for their children.
For families of adults with profound disabilities living at home, we are concerned this means essential care like transport, personal care, and supervision will be increasingly categorized as normal parental duties. The new laws mean the NDIA is restricted from funding supports if the main aim is to “reduce burdens on parental time” or give effect to a parent’s preference for supports instead of providing care themselves.
The 2026 Bill legislates a legal presumption that parents are responsible for “substantial care” (including intensive and around-the-clock supports), directly cutting against the original vision of the scheme covering the lifetime extra costs of disability.
This leaves us frightened of what happens when we physically cannot provide this care anymore.
Tightened “Reasonable and Necessary” Tests
The proposed reforms require participants to explore all alternative “treatments” before qualifying for funding or certain supports. For individuals with profound, permanent intellectual or physical disabilities, this creates immense stress. We are worried the NDIA will demand we pursue medical surgeries or medications at our own expense. The new wording implies that if a therapy or intervention can “alleviate” a condition even slightly, the impairment might no longer be legally deemed permanent.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2374
The NDIS’s original goal was to provide lifetime security for participants, but the new Bill gives the Minister authority to progressively reduce or restrict funding for capacity-building and social participation supports, shifting burdens onto underfunded state and community health systems. Navigating multiple systems will make ensuring appropriate supports even more complex and increase the risk for our son.
We urge that protections for profoundly disabled adults and children, particularly those with rare syndromes, be enshrined in legislation to safeguard our son and his peers now and into the future. The proposed legislation fails to prevent future Ministers from further reducing the scheme, leaving vulnerable participants at risk.
Our son is the cohort that the NDIS was initially envisaged for and the scheme implementation, though not without issue, has been positively life changing.
For individuals who have relied on the national disability scheme since its inception, using supports responsibly and without engaging in fraud, the proposed reforms represent a significant regression. These changes signal a troubling return to outdated approaches to disability care and a devaluation of the lives of Australians with disabilities.
In summary:
Those with permanent, significant and complex disabilities require lifelong, individualised disability support. Sustainability of the scheme must not come at the expense of safety, dignity or human rights Participants with permanent, significant and complex disabilities requiring 24/7 high intensity support should be recognised as a protected cohort. Blanket funding cuts or ratio changes cannot be safely applied to people with severe intellectual and communication difficulties. This level of protection is essential to prevent injury, abuses, neglect, crisis or institutionalisation. Caring for a child with Angelman Syndrome far exceeds ordinary parenting at any age. The proposed provisions on parental responsibility risk making the extraordinary work of carers invisible and could deny essential supports. Social and community participation funding and Supported Independent Living funding enable adults with Angelman Syndrome to live safely and meaningfully. Cuts to this funding will transfer the burden back to ageing parents, further threatening their health and independence. Supported Independent Living arrangements depend on specific staffing ratios for safety (not just minor accidents but life threatening). Block-funded or standardised models remove choice and accountability. Under previous state-based schemes our son was hospitalised with life threatening seizures due to carers at a respite program not ensuring he was eating and drinking sufficiently. He had seizures and was shortly admitted to hospital due to malnourishment. People with Angelman Syndrome have severe communication disabilities and require extra safeguards. Communication support is central to safety, behaviour management and dignity. Independent review rights must be maintained for all plan changes.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2374
There must be parliamentary oversight and co-design with disability communities (including parents of profoundly disabled adults and children) before the new rules are implemented. Our son is non-verbal and unable to advocate for himself. He is frequently not represented appropriately in co-design activities or other engagement activities. As his carers and advocates, we are regularly excluded from the consultation or co-design process.
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