Submission 2128

Submission to the Senate Community Affairs Committee National Disability Insurance Scheme Amendment (Securing the NDS for Future Generations) Bill 2026

Submitted by a person supporting a person with lived experience of disability.

My 50-year-old brother who suffers intellectual impairment and high level autism has been on the NDIS scheme since its inception into our area in 2014.

Prior to that, he was in a mainstream school for as long as my mother could keep him there which was in line with the prevailing disability philosophy of the time. In fact we have come to suspect he must have suffered severe bullying if not outright abuse, and it is only with the NDIS supports that we have been able to surround our brother with the types of support and services he needs to accept that his limitations are no barrier to him receiving the respect and opportunities the rest of us take for granted.

To compound matters, our father died when my brother was a very young child, leaving my mother with 4 young children to raise and as the decades have passed and she is now an 85-year-old, frail and forgetful lady, the challenges of looking after our brother are only increasing.

In the last 12 years the changes we have seen in our brother thanks to his NDIS assistance cannot be overstated. However, how our brother is to live once our elderly mother dies is an issue of major stress and fear for all of us and I’m sure especially my mother who during covid suffered a massive heart attack and continues to need constant medical attention. Despite our deep love for our brother and our sincerest desire for the very best outcomes for him, all his siblings have families of their own and careers that demand our time, and caring for our brother is an onerous responsibility none of us is able to manage without the incredible help receives from his NDIS carers. The coordination required to organise these carers alone is in itself a serious job as is knowing the services available and how to access them in the first place. -

Since accessing the services recommended by our Support Coordinator, we have all seen the marked improvement in our brother’s happiness, comfort with himself and progress. Our brother has significant social and communication difficulties but with the support of the NDS his goal is now to remain living in the family home independently once our mother dies. This is now for the first time seeming like a realistic possibility; not just in relation to the practicalities of running a household but also as regards loneliness and the mental health issues that result from those suffering social isolation.

Submission 2128

Ironically, the savings to us as taxpayers by our brother remaining independent will be huge despite the outlays incurred by the NDIS in assisting him to achieve his goal.

Saying this, we are completely supportive of changes to the NDIS to make the NDIS sustainable. We are desperate to see legislative changes to target areas of money wastage and outright fraud, but some of the changes proposed seem to instead target our most vulnerable:

• Cut backs to social and community participation - an area that our brother has really needed support with and will be needed to allow him to live independently into the future

• Changes to support coordination – a component of the NDIS that has really benefited our family. Prior to being appointed a Support Coordinator, we had absolutely no concept of what services our brother needed nor how to access them. Given the complexity of the scheme, someone like our brother cannot possibly manage without the dedicated support of someone in this role

• The introduction of the iCAN tool to determine funding levels - in order to survive his secondary school years, our brother learnt how to mask his disability to an extent capable of fooling the casual observer. As our brother has aged, he has now further learned the vague responses to use to fool people into thinking he is coping fine, even to the extent of misrepresenting what he is capable of doing. Our family lives with the real fear that when asked, will claim to be capable of almost everything, and the ICAN assessment might rate him at a much higher level than he is actually functioning with.

• The impact all the changes will have on our brother who is unable to cope with change. Some previous funding amendments resulted in changes being required to our brother’s daily schedule, and our brother’s emotional outbursts increased alarmingly as his stress levels did. Although never physically harmful to others, these outbursts did sharply increase in intensity, violence and frequency

• Anxiety around electronic plan development. Not having human assistance and instead being forced to rely on technology seems like a robodebt scheme waiting to happen all over again.

While our family is so grateful to the Australian government and its taxpayers for providing the framework for our brother’s amazing supports, we are cognisant of the changes needed to the scheme to ensure its sustainability for future generations of our most vulnerable. How the savings required are found, however, is what is in issue. We fervently hope our community’s disabled aren’t chosen to bear the brunt.

Submission 2128

With my family’s deepest hopes Australia will continue to support our weakest and most vulnerable.