Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill

Submission 1475 I am writing as the parent of a young child with Trisomy 21 (Down syndrome) who has been supported through the NDIS since infancy. I appreciate the opportunity to provide a lived experience perspective on the proposed reforms.

I understand and support the need to ensure the long-term sustainability of the NDIS. It is important that public funding is used responsibly and that the Scheme remains viable for future generations. However, I am deeply concerned that many of the proposed changes risk placing a greater burden on participants and families who are already carrying significant caring, administrative and emotional responsibilities. My daughter is 2.5 years old and has Trisomy 21, including low muscle tone, intellectual disability and developmental delays. Since she was three months old, she has required intensive allied health support including physiotherapy, speech pathology and occupational therapy. Like many children with disability, she also attends numerous medical appointments and requires extensive coordination of care and administration behind the scenes. The NDIS has allowed us to access early intervention supports at the time they matter most. Research consistently shows that early intervention improves long-term outcomes for children with disability. Through ongoing physiotherapy support, my daughter learned to walk earlier this year at almost 2.5 years old. This was an enormous milestone for our family and a direct result of consistent therapy and support. She is also beginning to use Key Word Sign to communicate despite not yet having verbal speech. These gains are significant, but they do not happen automatically. They require time consistency expertise and substantial coordination by families. oneofmygreatestconcernswiththeproposedreformsistheincreasingburdenplacedonfamilies torepeatedlyprovedisabilityjustifysupportsandnavigatecomplexadministrativesystems.Trismycondition.Despitethis,reassessmentprocessesonoften feelasthoughImust repeatedlyprovethepermanenceandsignificanceofmychild’s disability in highly technical language inordertosecurethesupportsshe needs. Reassessments periodsareparticularlydistressingbecausethe processfocussentirelony whatmychildcannotdo.Asaparent,Iwanttocelebratsherachievementsandprogress.Instead, imfeelpressuredtosemmphasisedeficitsandlemitationsensure fundingisme maintained.ThisisemotionallyexhaustingcreatesongoinganxietyaboutwhetherIwill “saytherightthing”orprovideevidencein thecorrectformat.I amaneducatedcapablepersonwho worksstudiesself-manages my daughter’s NDIS plan.Evenso,navigatingThe Scheme oftenfeelslikelearning anentir newlanguage.Therapistreportsthatmeaningfullydescribemydaughter’ sneedsdonotalways appeartoproperlyconsidered.Outcomescanvarysignificantlydepending onwhoa ssessestheadvlication,how evidence isinterpreted and howwell familiesunderstandth esystem itself. This creates inequityuncertaintyforparticipants.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1475

I am also concerned about any reforms that narrow access to supports or increase expectations on unpaid carers and families. Much of what we currently do already falls under “parental responsibility”. We are not accessing respite, community participation or extensive additional supports at this stage. However, the existing therapy supports are critical to our daughter’s development and to our family’s ability to function.

Without adequate NDIS funding, we would need to significantly reduce therapies to only what we could privately afford. This would likely widen the developmental gap between our daughter and her peers over time and could reduce her future opportunities for inclusion in mainstream education and community settings. In the long term, this may increase rather than reduce costs to government systems.

There are also broader impacts that are often invisible in policy discussions. Coordinating therapies, scheduling appointments, processing invoices, managing claims, preparing reports for reassessments, tracking budgets and maintaining records for potential audits is a substantial workload. This occurs alongside daily parenting, employment, study and maintaining a household. The administrative burden alone can be overwhelming.

The emotional burden is equally significant. Parents of children with disability already carry the grief, uncertainty and complexity that can accompany caring responsibilities. Policies that increase fear, uncertainty or barriers to support do not simply affect budgets — they affect family wellbeing, mental health and long-term outcomes for children.

I encourage the Committee to carefully consider the practical consequences of reforms that increase reassessment requirements, narrow definitions of supports or place greater reliance on unpaid carers without providing additional systems of support. In particular, I encourage consideration of:

• longer plan periods for participants with permanent disabilities such as Trisomy 21
• simpler and more responsive plan amendment processes for young children whose needs can change quickly
• greater consistency and transparency in decision-making
• ensuring therapist evidence from professionals who know the child well is meaningfully considered
• reducing unnecessary administrative burden on families
• recognising the substantial unpaid labour performed by carers and parents
• ensuring reforms do not unintentionally reduce early intervention access, which is critical for long-term outcomes

The NDIS has made a meaningful difference in our daughter’s life. Because of these supports, she is walking, communicating and participating more fully in the world around her. Our family has been able to support her development earlier and more effectively than would otherwise have been possible.

I ask the Committee to ensure that reforms intended to protect the future of the NDIS do not unintentionally make the Scheme harder to access, harder to navigate and more distressing for the very families it was designed to support.

Submission 1475

Thank you for considering my submission.

28 May 2026