National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3098
Submission to the Senate Inquiry into the NDIS
Amendment Bill
- Introduction Thank you for extending the Senate inquiry into the NDIS Amendment Bill. This extension is essential to ensure that people with disability, their families and support networks have a genuine opportunity to be heard before significant legislative changes are made.
I am the parent of a 21-year-old daughter, , who has Phelan-McDermid syndrome, a rare genetic condition associated with severe intellectual disability and lifelong support needs. The NDIS plays a critical role in providing the supports that enable her to participate in her community, maintain her wellbeing and live with dignity.
’s disability is permanent and there is currently no cure. Importantly, Phelan-McDermid syndrome can involve developmental and functional regression, meaning that skills that have been learned can be lost over time. Skills that take months or years to develop may disappear and require significant support, repetition and retraining to regain. Even when skills are successfully acquired, they often need to be practised regularly to be maintained. Without ongoing support and opportunities for participation in everyday activities and the community, there is a real risk of deterioration in functional abilities, independence and quality of life.
While recent community advocacy has resulted in some proposed amendments to the Bill, serious concerns remain regarding transparency, accountability, participant rights and the long-term impacts on people with disability. These concerns are particularly significant for people like , whose support needs are lifelong, complex and subject to change over time.
This submission outlines those concerns and explains the potential consequences for and families in similar circumstances.
- Key Concerns with the Bill
2.1 Ministerial Powers and Hidden Caps
The Bill enables the Minister, through section 33(2EA), to impose caps on essential supports, including funding amounts, support intensity, frequency, duration and worker-to-participant ratios. These powers fundamentally alter the principle on which the NDIS was established: that supports should be individualised and based on a participant’s reasonable and necessary needs.
The Bill also creates a framework under section 34A that could facilitate broad restrictions on categories of support, including community participation and therapy supports. Such measures risk disproportionately affecting people with high and fluctuating support needs.
2.2 Lack of Transparency The Rules and legislative instruments that will govern how these provisions operate have not yet been released. Similarly, the budget-setting methodology and algorithm that may underpin future planning decisions have not been made available for public scrutiny. Without access to these critical documents, Parliament, participants and families cannot properly assess the practical implications of the proposed legislation. Impact modelling has also not been publicly released.
2.3 Risk of Removing Participants Without Adequate Alternatives
The Bill creates pathways that may result in participants exiting the NDIS before equivalent and reliable alternative supports are established.
2.4 Erosion of Review Rights and Choice and Control Choice and control are foundational principles of the NDIS. The Bill weakens participant review rights and increases the potential for decisions to be made through automated processes that are not transparent or easily understood.
- Lived Experience: Impact on
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3098
These concerns are not theoretical for our family. We currently have an Administrative Review Tribunal hearing scheduled in August seeking additional support hours for our daughter . Her current funding does not fully meet her needs for personal care and social participation.
has Phelan-McDermid syndrome, a rare genetic condition that causes severe intellectual disability and lifelong support needs. Her disability is permanent and well documented. Despite this, our family continues to face ongoing requirements to provide evidence and justify supports that are essential for her safety, wellbeing, personal care, communication and community participation.
’s needs vary from day to day and may also change over time due to the regression that can occur as part of her condition. Skills that have taken years to develop can be lost and may require substantial time, support and resources to rebuild. Effective support therefore requires flexibility and responsiveness to her individual circumstances.
’s support needs are not simply about maintaining her current level of functioning. Because Phelan-McDermid syndrome can involve regression, support is often required to preserve skills she has already learned. Everyday activities, social interaction, community participation, communication and personal care routines provide opportunities for her to practise and reinforce those skills. For , maintaining skills requires ongoing repetition, consistency and support. Without regular opportunities to practise, skills can deteriorate and may require extensive retraining to rebuild.
Funding for support workers and community participation should not be viewed as discretionary or optional. For , these supports are an essential part of maintaining skills, preventing regression and promoting the best possible quality of life. Reducing support hours or limiting opportunities for community participation risks undermining progress that has taken years to achieve.
The NDIS process already places considerable emotional, financial and administrative pressure on families.
- Human Rights Considerations Australia has ratified the United Nations Convention on the Rights of Persons with Disabilities and has committed to promoting dignity, autonomy, equality and full participation in society.
The NDIS was created to provide individualised supports that enable people with disability to live ordinary lives and participate fully in their communities.
- Recommendations
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prohibit Ministerial caps on essential supports under section 33(2EA)
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prohibit broad restrictions or cuts to community participation and therapy supports under section 34A
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require publication of all Rules and legislative instruments, including any budget-setting methodology or algorithm, before any parliamentary vote
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publish comprehensive impact modelling to enable proper scrutiny
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ensure no participant is removed from the NDIS until appropriate alternatives are available
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preserve participant review rights and protect choice and control as core principles of the Scheme
- Conclusion People with disability and their families deserve certainty, transparency and a fair process. For people like , ongoing supports are essential for maintaining skills, preventing regression, supporting participation and preserving dignity and quality of life. I urge the Committee to protect the rights, safety and dignity of people with disability by ensuring these concerns are addressed before the Bill proceeds.
Thank you for considering this submission.