NDIA Accountability Project

Daughter’s need for social and community supports due to complex disabilities

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

Submission 3684

May 29, 2026

Dear Sir/Madam,

My name is and I am an Assistant Chief Fire Officer (ACFO) for the Country Fire Authority in North East Victoria. Whilst this senior operaJonal leadership posiJon is very rewarding, I consider my most important role in life as being the proud father to three beauJful girls. I am especially honoured to be the dad of an amazing daughter who has very complex disabiliJes – my youngest child, .

   is a dearly loved and doted upon member of our family. She is almost 13 years old with ASD level 3, hypotonia (low muscle tone), microcephaly, and a severe intellectual disability. She spent the first two years of life in and out of Royal Children’s Hospital and was nasogastric fed for almost two years. She is sJll unable to feed herself and consumes food of a mashed consistency. This allows for easier swallowing and alleviates choking hazards as she is yet to master chewing.
  has very limited funcJoning of her hands and is unable to complete any self-care tasks independently.        is completely non-verbal, using an AAC (AugmentaJve and AlternaJve CommunicaJon) device and two key words signs to communicate her wants and needs. She sJll wears a nappy 24/7, experiencing both urinary and faecal inconJnence. She can have up to five nappy changes a day with regular soiling of clothes as well as bedding.     has no awareness of her own safety, is unable to dress herself, blow her nose, brush her teeth, tell me when she is unwell or worse, in pain. Despite all her issues,        is one of the happiest li	e girls you will ever likely meet. Everyone who knows her, loves her.

  will need support with EVERY single task, EVERY single day, for the REST OF HER LIFE.

As my job takes me throughout the state, working extended hours, late into the evening and on many weekends, the bulk of care for is undertaken by my wife, . I have witnessed first-hand the level of dedicaJon my wife requires to look aaer our daughter 24/7, as her primary carer.

Society expects all parents to execute a level of care for their children unJl such Jme that they can ‘fend for themselves’. Now imagine a child that is never able to do that. Imagine that the care will stretch for your enJre life, even into your old age and then beyond your lifeJme. And let’s be clear, we are not talking about helping out with an electricity bill here or there, providing financial advice or a shoulder to cry on when a relaTonship goes pear shaped…….we are talking about changing your adult child’s nappy, bathing them, gedng them dressed, brushing their teeth and hair, pudng them to bed, driving them to therapies and so on and so on. That is what parents with children living with profound disabiliJes are facing, EVERY SINGLE DAY, FOR THE REST OF THEIR LIVES. And that is why I strongly and fundamentally oppose the NDIS Future Genera8ons Bill 2026 as tabled to parliament

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

Submission 3684

It is extremely important that be provided with the same quality of life afforded to most people. Being out in the community and a part of society will only help to ease the social isolaJon many people like feel because of their disability. It is our role as a society to look aaer the most vulnerable in our community. In doing so, there is an opportunity for the disabled community to teach others about resilience, acceptance, compassion, empathy and kindness – more of the things that we should be striving for in this increasingly hosJle world.

I thank you for your Jme in reading this submission. As a concerned dad and protector for my child, I would hope that the senate is able to consider the real-life implicaJons any NDIS changes have on families such as ours. It is my greatest hope that the NDIS remains a system that supports, protects and empowers the Australians who rely on it every day. Families should not be lea conJnuously fighJng a broken system when our energy should be spent supporJng the people we care for and love the most.

Please make the NDIS FAIR for ALL parJcipants and carers in genuine need of support. The rights of disabled people to live a happy, fulfilling and dignified life depends on it, as does that of those caring for our loved ones.

Kind regards,