National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1215
SENATE SUBMISSION
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
My name is . I am the mother of , a 15-year-old with Cri du Chat Syndrome and associated complex communication, personal care, mobility, and behavioural support needs. Cri du Chat is a permanent and significant disability. lives with our family in . She requires constant, skilled support across all environments.
I am writing to express concern about the proposed NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 and its likely impact on participants with significant disability and high support needs.
We all want a sustainable NDIS. However, sustainability must be achieved through sound, individualised decision-making, not broad reductions that undermine reasonable and necessary supports.
Until recently, I believed my daughter’s access to the Scheme would remain protected due to the significant functional impacts of her disability across all areas of life. However, in the same week these proposed reforms were announced, her plan was unexpectedly reassessed with major reductions across multiple support categories. We were not given the opportunity to provide updated evidence before the reassessment, nor were we provided with clear reasons for why previously approved supports were no longer considered appropriate. The result has been an immediate reduction in support and significant stress as we have been forced into an internal review process. We have felt the impacts of these proposed reforms before they have even been legislated.
The following areas are of particular concern to me:
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The 50% cut to social and community participation funding Reductions to social, community, and capacity-building supports will significantly limit access to ordinary life experiences for people with disability. With appropriate supports, our daughter has been able to participate in community activities, connect with peers in age- appropriate ways, and engage in socially valued roles. Her participation requires structured planning, communication support, and risk management. Without adequate support, participation becomes unsafe or unmanageable, social isolation increases, and opportunities for inclusion are lost. The NDIS was built on foundations of social inclusion, participation and choice and as a family we have worked extremely hard to uphold these rights for our loved one. There are no alternatives available in our community that provide the 1:1 trained support our daughter requires. This funding is what makes her inclusion at Youth group, local events and connecting with family and friends possible. It also is providing her with the opportunity to explore work in preparation for her transition from school to adult life.
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The 10% cut to therapy funding For people with Cri du Chat Syndrome, capacity-building supports are essential, not optional. They support communication development, safe swallowing, maintenance of mobility, regulation, and participation with some independence. Reducing these supports does not reduce need. It delays costs and increases long-term reliance on more intensive supports including assistive technology. As our daughter approaches a significant transition from school to adult life, it is critical that she has access to the supports that will enable her to be safe in new environments and with new people.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1215
- Broadening of parental responsibility The Bill expands the definition of ‘parental responsibility’ and expects parents to provide ‘substantial care’. Keeping our daughter safe, regulated, included, and connected requires constant unpaid care, coordination, advocacy, and supervision far beyond ordinary parenting. Despite her recognised need for intensive support at school, much of this responsibility shifts back onto family under the label of “parental responsibility.” Since her reassessment, we have had to significantly reduce support in our home, with immediate impacts including reduced work hours, increased dysregulation and self-harm, and fewer opportunities for social connection for our whole family.
Being told this level of care is simply parental responsibility places unsustainable pressure on already exhausted carers, most often women. It is insulting and undervalues the significant invisible labour provided by carers across our country. Carer burnout directly impacts the safety, stability, and wellbeing of disabled people themselves. Families cannot endlessly absorb unmet support needs without harm.
Concerns about misuse of NDIS funding are valid, but broad reductions to participant supports are not the solution. Since 2017, I have self-managed my daughter’s plan carefully and responsibly, ensuring transparency and value for money while stretching funding as far as possible within the intent of the Scheme. Despite this, supports have still been reduced without clear individualised justification.
I urge the Senate to ensure any changes to the Act:
Amend or remove proposed section 34A (the Minister’s power to cut funding categories without individual assessment or right of review). Ensure social and community participation cuts do not apply to young people who require 1:1 funded support for community access and independence development. Reverse the 10% therapy funding cut, particularly for teenagers with ongoing therapy needs approaching major life transitions. Protect the right to seek plan review when circumstances change, especially during transitions. Revise the parental responsibility provisions to account for the reality of caring for a child or teenager with high and complex needs.
We all want the NDIS to succeed. However, sustainability must not come at the cost of fairness, participation, and the right of people with disability to live ordinary lives.
Yours sincerely,
Publication preference: Please keep my name private.
Submission prepared with support from the Cri du Chat Support Group of Australia. You may delete this line if you prefer. criduchat.org.au | info@criduchat.org.au