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

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Submission Regarding Proposed NDIS Changes

To the Senate Community Affairs Legislation Committee, Re: Proposed NDIS Changes and Impact on [redacted]

We are writing as the parents of [redacted] regarding the proposed NDIS changes including the proposed 50% reduction in social participation. [Redacted] is a woman who lives…, requiring one-to-one support around-the-clock.

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 in this funding directly reduces overall hours provided under the scheme.

cannot be left alone. She faces impaired judgement; poor awareness regarding personal safety or emergency situations due to communication limitations such as speech difficulties which may lead to misunderstandings during emergencies like falls from a height while wandering around without supervision can cause serious injury even death. Additionally she suffers epilepsy seizures making it difficult swallowing food properly leading complete dependence on others’ assistance daily living tasks including eating mobility medication administration etc., emotional regulation and response time management skills are also compromised requiring constant support at all times,

If reduced funding cannot fill gap because we live approximately three hour round trip home frequently interstate overseas work family commitments both parents own significant health issues previously documented supplied ndis neither safe nor sustainable fall back onto ageing parents existing concerns care needs.

The current arrangements allow to safely within her community rather than facing crisis hospital admissions institutional settings unsafe gaps.

We ask Parliament carefully consider real-world impact these changes have profound disabilities complex support needs blanket reductions categories individual review place vulnerable people risk.

Strongly urge: preservation flexible Core funding arrangement protection participants with high support fair transparent assessments proper appeal rights before funding reductions occur.

NDIS allowed live safely dignity stability within her own home, Any reduction in supports would devastating consequences for her wellbeing quality of life.