National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2219
Personal Submission to the Senate Community Affairs Committee National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submitted by: K’s Cousin | May 2026
Who I Am and Why I Am Submitting
I am writing this submission as K’s cousin. K is 13 years old and was born with Cri du Chat syndrome, a rare genetic condition that causes severe intellectual disability, significant communication delays, complex behaviours of concern, and high physical support needs. She is my family, and I have grown up alongside her.
I am making this submission because I am deeply concerned that this Bill will negatively affect K and many others living with profound disability. I believe it is important that the Committee hears not only from parents and formal carers, but also from extended family members who witness the realities of disability support and understand what these changes will mean in everyday life.
For families like ours, these reforms are not abstract policy settings. They have direct and serious consequences for a child’s independence, wellbeing, inclusion, and future.
Growing Up Alongside K
I have always known K. Growing up alongside her has shaped how I understand disability, community, and what genuine inclusion looks like. K is funny, determined, and full of personality. She also has very high support needs that do not stop, cannot simply be reduced, and require skilled, consistent support to manage safely and effectively.
I have seen our family at events both with and without K’s support workers, and the difference is profound. When K has the right support around her, she is able to participate, connect, and be included in family and community life. She is not sitting on the sidelines — she is part of what is happening.
When that support is absent, the situation changes dramatically. The responsibility falls heavily onto her mother, who is expected to manage complex care needs alone while the rest of the family watches the strain this creates. This is not sustainable, and it is deeply concerning to consider that the proposed changes in this Bill may make this situation more common and more permanent.
I have also seen K at her happiest — excited to spend time with friends, proud of her growing independence, and genuinely engaged with the world around her. The community participation supports that this Bill proposes to significantly reduce are what make those experiences possible. These supports are not optional extras or luxuries. They are the practical foundation that allows K to participate in life and maintain social connection and independence.
What Concerns Me About This Bill
I am not a policy expert, but I have read enough about this Bill to be genuinely worried about the direction it takes and the consequences it may have for people with disability and their families.
My concerns include:
The proposed 50% reduction to community participation funding from 1 October 2026 appears to apply without adequate flexibility for individual circumstances and without meaningful avenues for appeal. For K, this would likely mean reduced access to the community, fewer opportunities to maintain friendships and independence, and a greater transfer of responsibility back onto her family.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2219
The proposed expansion of Ministerial powers is also concerning. Granting the power to make future changes to supports without sufficient safeguards or accountability creates uncertainty for participants and families who rely on stability to plan and manage complex support needs. The NDIS was intended to provide certainty and security; these provisions appear to move in the opposite direction.
The framing of ‘parental responsibility’ within the Bill raises serious concerns for families supporting children and young people with profound disability. While families play a central role in care, K’s needs extend far beyond what any parent can reasonably or sustainably manage alone over the long term. Policies that assume families can absorb increasing levels of care risk placing enormous pressure on parents and increasing the likelihood of exhaustion and burnout.
The removal or reduction of appeal rights is perhaps one of the most troubling aspects of these reforms. Funding decisions have profound impacts on people’s daily lives. If decisions are incorrect or fail to reflect a participant’s needs, families must have access to fair and independent review processes. Removing these safeguards risks leaving participants without meaningful recourse when decisions cause harm.
Together, these changes create a picture that is difficult not to view with alarm. Rather than strengthening confidence in the NDIS, they risk increasing uncertainty and fear among the very people the Scheme was created to support.
My Request to the Committee
K is my family. I want her to have a good life — one that includes friendships, independence, community participation, and the security of knowing she is valued and supported.
The NDIS, at its best, makes that possible. I am concerned that this Bill, if passed without significant amendment, could undermine many of the supports that make this possible for K and others with similar needs.
I respectfully ask the Committee to carefully reconsider provisions that reduce participant supports, weaken appeal rights, and concentrate decision-making power without adequate safeguards or accountability. Reform should address the genuine drivers of cost growth — including administrative inefficiencies and system-level problems — rather than placing greater burden on people with disability and their families.
The NDIS Act promises people with disability certainty that they will receive the care and support they need over their lifetime. For families like ours, that promise matters deeply.
K deserves that certainty. I urge the Committee to protect it.
Note on Publication
The author of this submission requests that their name not be published. The submission may be published in de-identified form. Reference to ‘K’ is used throughout to protect the participant’s privacy.