NDIA Accountability Project

Daughter with Rett Syndrome, Autism Spectrum Disorder, Epilepsy, Diabetes, Severe Osteoporosis and multiple additional complex support needs requires 24/7 care

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

Submission 2039

Submission Regarding Proposed NDIS Changes

To the Senate Community Affairs Legislation Committee,

Re: Proposed NDIS Changes and Impact on

We are writing as the parents of regarding the proposed NDIS changes, including the proposed 50°/o reduction to social and community participation funding.

    is a 29-year-old woman living with RS!t Syndrome, Autism Spectrum Disorder,

Intellectual Impairment, Epilepsy, Diabetes, Severe Osteoporosis and multiple additional complex support needs. also has a recent diagnosis involving a chromosome deletion, further contributing to the complexity and permanence of her disability and support needs. requires 1: 1 support 24 hours per day, 7 days per week, including active overnight support. Her most recent Functional Capacity Assessment completed in 2023 assessed as a Level 7 on the Care and Needs Scale, meaning she “cannot be left alone.”

   lives with support in a home provided by us, her parents. This is      s childhood

home, which we continue to maintain for her so she can safely remain living within a familiar environment and connected to her community. We do not reside in the home ourselves. Instead ives there with support workers providing round-the-clock care both day and night.

 has had a consistent support team throughout her teenage and adult life. Across every

NDIS plan review, we have made it very clear that we wanted supports to remain flexible within Core Supports and to continue as plan managed. This flexibility has been essential in maintaining continuity of care and preventing disruption to stablished support arrangements. It has enabled experienced staff who know communication, routines, behaviours, medical risks and safety needs to continue supporting her safely year after year.

As arents, we continue to oversee and coordinate s NDIS plan, funding arrangements and support team. This structure has worked successfully and smoothly for many years and has enabled to remain safely living within her own home with stable supports and continuity of care.

Although s plans have historically not contained sufficient funding to fully cover the ture cost of 24-hour support and active overnight care, her providers and support team have worked collaboratively and flexibly to ensure ha.s continued receiving the level of care she requires. Without this flexibiliT would have been left without essential supports.

We are deeply concerned about broad funding reductions and blanket policy changes being applied to people with complex and high support needs without proper individual consideration.

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

Submission 2039

For community access funding is not simply “social activities.” It forms part of the staffing structure that keeps her safe, supervised and supported throughout the day. Any reduction to this funding would directly reduce her overall support hours and place her at significant risk.

 cannot be left home alone safely under any circumstances. She has impaired judgement and safety awareness, communication limitations, high falls risk, wandering behaviours, epilepsy, swallowing risks and complete dependence for personal care and daily living tasks. She requires support for eating, mobility, medication administration, personal care, emotional regulation and emergency responses.

If funding is reduced, our family cannot simply “fill the gap.” We live approximately three hours round-trip from home and are frequently interstate or overseas due to work and family commitments. In addition, both of us have our own significant health issues, which have previously been documented and supplied to the NDIS. It is neither safe nor sustainable for s care needs to fall back onto ageing parents with existing health concerns.

The current arrangements allow to live safely within her own home and community rather than facing the risk of crisis situations, hospital admissions, institutional settings or unsafe care gaps.

We are asking Parliament to carefully consider the real-world impact these changes may have on people with profound disabilities and complex support needs. Blanket reductions to funding categories without proper individual review place vulnerable people at serious risk.

We strongly urge:

  • protection of choice and control,
  • preservation of flexible Core funding arrangements,
  • protection for participants with complex and high support needs,
  • fair and transparent individual assessments,
  • and proper appeal rights before funding reductions occur.

The NDIS has allowed to live safely, with dignity and stability, within her own home and community. Any reduction to her supports would have devastating consequences for her safety, wellbeing and quality of life.

Thank you for considering our submission.