Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDS for Future Generations) Bill 2026
I am the mother of an almost 19-year-old daughter living with Angelma syndrome, a rare and severe neurodevelopmental disability in regional Far North Queensland.
Firstly, I want to acknowledge that the NDIS has made an enormous difference to our family. Supports funded through the Scheme have improved my daughter’s quality of life, allowed her to participate more safely in the community and helped sustain our family’s ability to continue caring for her long term. I am genuinely grateful for the opportunities and support the NDIS has provided.
For that reason, the uncertainty surrounding these reforms has been unsettling for families like mine who are still trying to understand what the changes may mean in day-to-day life.
It is from this perspective that I make this submission.
Angelman syndrome has a well-understood and documented trajectory. While therapies and supports can help my daughter achieve her full potential, they do not remove the need for extensive lifelong support. My daughter is non-verbal, has epilepsy, significant coordination difficulties and a complex movement disorder. Although she can walk independently, she has little awareness of danger and requires support with all activities of daily living and constant supervision to ensure her safety. Standardised functional assessments can struggle to capture the cumulative impact of supervision needs, behavioural regulation challenges, sleep disruption and safety risks that we manage every day.
She depends on others for communication, emotional regulation, personal care and meaningful participation in the community. She requires highly individualised support, often on a 1:1 basis, to participate safely and meaningfully in everyday life. For my daughter, success is not measured by becoming independent. It is measured by maintaining communication, mobility, emotional regulation, participation and safety, and preventing deterioration or crisis.
Families should not be repeatedly required to prove the permanence of a disability when the need for substantial lifelong support is already known. We already know my daughter will require support throughout her life. Continuing to spend time and money repeatedly proving that fact adds cost to the system and stress to families without improving outcomes. The focus should instead be on planning for a lifetime of support and ensuring the right supports are available at the right time.
Turning 18, finishing school and leaving paediatric care feels a bit like being thrown back to the beginning. Just when you think you have found your footing, you are back gathering reports, filling out forms and trying to justify support for a disability that has not changed.
At the same time, I find myself advocating for the type of plan funding that makes bean counters nervous. The cost is significant, but so is the disability. My daughter requires intensive support and always will. She needs 1:1 support to participate safely in the community and I need to continue working to support our family. Angelman syndrome is a profound lifelong condition, and that reality should inform the NDIS, not be ignored by it.
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Unfortunately, day programs are not designed for someone with my daughter’s level of disability. Activities such as cooking, gardening, art and workforce preparation are well beyond her capabilities, and she would largely be an observer rather than an active participant. Her anxiety also increases in many group settings and can trigger debilitating medical episodes, making them unsuitable rather than beneÞcial.
Her disability does not remove her desire for connection, inclusion and meaning in her life. For my daughter, community participation is not a luxury or an optional extra. It is only possible because individualised support is available. Reducing access to those supports does not increase independence or participation. It simply reduces her opportunity to engage with the world around her.
My daughter cannot reliably tell me when something is wrong. She cannot explain unsafe situations, advocate for herself or describe events in the way most adults can. We have already experienced the consequences of inadequate supervision, and it was heartbreaking. It still is. For families like ours, appropriate support and supervision are not optional extras. They are essential safeguards.
My daughter needs workers who are experienced, patient, consistent and conÞdent supporting someone who is non-verbal, has signiÞcant anxiety, complex behaviours and requires constant supervision. These are highly skilled roles and continuity of support is critical to her wellbeing and safety.
However, because she now has a Behaviour Support Plan and restrictive practice requirements, we are generally limited to registered providers and workers operating within those frameworks. The result is a system where workers supporting people with the highest needs earn less than independent workers supporting participants with far lower complexity and risk.
That makes zero sense. Consideration should be given to a more tiered approach that recognises complexity, behavioural support requirements and safeguarding responsibilities. A system that appropriately rewards complexity is not just fairer, it is likely to be more efÞcient. Retaining experienced workers reduces turnover, improves continuity of care and helps avoid costly crises and support breakdowns.
Her diagnosis informs all of this. There should be a more streamlined and diagnosis-informed approach that reduces unnecessary reassessment for both families and the NDIA itself in disabilities where there is a well-documented disease proÞle. I appreciate this won’t work for all disabilities, but it will most certainly work for others. It would also support better long-term planning for the Scheme and the likely cost of supporting participants across their lifespan.
I support the goal of improving consistency and sustainability within the NDIS. However, I urge the Government to ensure reforms retain flexibility and recognise that some conditions require lifelong, highly individualised support that cannot be adequately captured through generic frameworks alone.
While this submission tells my daughter’s story, it could easily be the story of hundreds of other Australian families living with Angelman syndrome. The details may differ, but the reality remains the same. These are lifelong disabilities. The support needs are substantial. The trajectory is well understood. The challenge should not be proving that support will be needed, but ensuring the right supports remain available throughout life.
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Families like mine are not asking for luxury or excess. We are asking for a system that understands the reality of profound disability and plans accordingly.
Thank you for considering my submission.