National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 670
NDIS Future Generations Bill 2026
Submission
I am the sole carer of my 34 year old son, Matthew, who was born with a profound intellectual disability, physical disabilities, epilepsy and other health related issues.
Matthew has a cognitive age of less than 18 months old, is non verbal and is fully reliant on others for all of his needs including; dressing, showering, feeding, incontinence management, health management, financial management, support management, behaviour management. Matthew requires 24 hour 1:1 support.
The introduction of the NDIS had a positive impact on Matthew’s life. It allowed choice and control which equated to him being able to access supports that added to his quality of life.
My experience with the NDIS as Matthew’s nominee of his self managed plan has been seeing what started out as a system with ‘good bones’ degenerate to a mismanaged, inconsistent, chaotic one.
I don’t think it is useful for me to list here all of the negative interactions I have had with the NDIS other than to say Matthew’s plan has been severely cut over the last year and he is funded for less than 40% of his actual support needs. NDIS continually use the ‘not reasonable and necessary’ card with the only explanation that he has informal supports. I am 65 years of age and my body and mind have paid a huge toll for the years I have devoted to my son. I have continually advised the NDIS that I cannot physically or mentally continue to provide 24 hour care day after day but my pleas are ignored.
I do understand understand the NDIS desperately needs a major shake up but I do not subscribe to the view that the government is putting forward that external factors are the major cause of the failures of the system.
I agree the eligibility definition needs to be redefined to significant and permanent disability. Functional capacity is a good tool but only useful if implemented correctly. I am opposed to a system that uses AI as a tool to determine functional capacity. There are so many ways this can lead to bad decisions. Disabilities are as individual as the person is with the disability. Any system that relies on information collected via a questionnaire type review is reliant on the person giving the information being able to provide accurate data. There are many reasons this may not be the case particularly the ability of person providing the data.
Apart from changing the definition, I believe the following measures would improve the sustainability of the NDIS:
- Tightening of accountability and auditing. The NDIS do not do regular audits of participants. They did not even require physical proof of expenditure until recently.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 670
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Reviews should be face to face with participant. This can be an actual visit or Telehealth type appointment. I have found that the NDIS representatives that I have interacted with during reviews have no idea of who my son is or his level of need. Reports have been provided but a clearly not read.
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The assumption that informal supports (parents) are available end once the participant reaches the age of 21 years. It is simply not reasonable to expect senior parents to provide high level care to a person with severe disabilities. I understand that not all informal supports are a child/parent relationship and this could be resolved by stating that a person over 65 years of age cannot be assumed to be informal support.
Thank you for allowing me to put forward my experience and thoughts and I wish you well with the task reviewing this Bill.