National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2699
Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am the parent and primary carer of my 19 year old adult daughter who at birth was diagnosed with Hypoxic-Ischaemic Encephalopathy with severe dyskinetic cerebral palsy, generalised dystonia, GMFCS Level V and epilepsy. Since birth my daughter has required constant 24/7 care and my daughter is completely dependent on others for all her needs. She is totally vulnerable.
The NDIS was created for my daughter, who unfortunately and through no fault of her own, easily ‘’qualifies’’ to be a SIL and SDA eligible NDIS participant. Our entire family is significantly impacted from the magnitude of need which my daughter requires. When one person acquires a significant and lifelong disability, many people are directly impacted.
The NDIS is arguably Australia’s greatest human rights system, which have brought transparency and awareness to the needs which are associated with significant disability. This awareness of the magnitude of need ultimately translates into a budget.
To seek change to existing laws which will reduce human rights, an individual’s right for control and therefore their right for choice because a budget has shown society the magnitude of the humane reasonable and necessary needs and requirements due to disability is an action by our parliament to choose not to listen to actual requirements. Need does not change should laws be changes which reduce a person’s human rights, their right for control and hence their right for choice.
We are terrified of and completely opposed to any law changes proposed which lower my daughters human rights, lower her right of control of her way of life, and therefore lower the right for choice.
To seek law changes to change the system with more governance powers is a change which increases costs. There are necessary requirements for improvement in the governance of the system and therefore it may be deemed reasonable to increase this governance cost.
However, we oppose government to seek law changes to reduce the funding of need. To do so reduces human rights, control and choice of the very vulnerable people and with it will increased the risk of safety and appropriate governance of the duty of care. Budget allocation toward need ensures more governance and safety than introducing more restrictions and rules
Importantly we seek that any changes does not restrict a participants control in the use of funds. To maintain the right to choose who can provide care, rather than being restricted to a select group for the provision of care will take away true control form the participant and hand that to the organisation or provider who has been mandated to provide the care. As my daughter is SIL and SDA eligible this is of great concern.
The NDIS is one stakeholder in covering the functional capacity based need a participant. Priavte Captial, Philanthropic and Carers (currently unpaid) as also significant stakeholders
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2699
in the complete provision of functional capacity needs. We oppose any law changes which threaten the ability for a participant to maintain control over the use of their funds (as it is insurance funds, not welfare) and likewise ensure that any law changes discourage the incentive for innovation, considering the disability sector is already lacking in innovative solutions.