National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3273
Hi,
Im writing to lodge my submission as webpage would not work.
My name is . ( I would like my submmision to be anonymous)I am the mother and carer for my 26 yr old daughter who has PraderWilli syndrome and an intellectual disability. I have never written a submission so I can only speak from the heart and talk about one of the impacts this Bill will have on my daughters life.
Praderwilli syndrome(PWS) is a rare syndrome. People with PWS, due to a dysfunctional hypothalamus, are hungry all the time, every minute of every day. They seek food constantly. The leading cause of death with PWS is obesity related disorders. The average life expectancy is still around 30. Weight must be strictly controlled and supervision is always needed around food and in the community.
I am opposed to the cutting of the social and community access budget by 50% for all NDIS participants. It will severely and detrimentally affect my daughters life, my life as carer and the lives of thousands of people on the NDIS.
Before the NDIS my daughter was climbing through windows and going into town to access food. She was entering neighbours properties and eating out of bins. She was shoplifting, she was sexually assaulted, as she will do anything to access food. She had extreme behaviour, we were physically and verbally assaulted, doors were smashed and possessions broken. She was unhappy, bored, frustrated, isolated and saw her life as having no purpose. She had several incidents of suicidal ideation.
Once she had support to safely access the community her life changed dramatically and so did mine as her carer.
She has friends and a boyfriend through accessing social activities, she completed 2 TAFE certificates and is currently studying a 3rd. She has a small job delivering the local newspaper, this has given her a sense of self worth as she sees it as being very important to the local community. She has volunteered at animal refuges. She walks everyday, swims and goes bowling. This has greatly improved her physical and mental health. This and constant food supervision by support workers has allowed her to better control her weight. Support allows her to attend medical appointments, shop without shoplifting food, visit friends and siblings.
A 50% cuts to her social and community access budget will again mean she will be isolated at home with her aging parents. She will be frustrated and put herself at risk to access food. Im sure this will cause suicidal ideation to return, extreme behaviours to return and her physical and mental health to drastically decline reducing her life expectancy.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3273
My physical and mental health wll also decline as I will have to try and fill that 50% gap. I am 65, have arthritis, sight problems and am also caring for her dad who is 72 with ahlzeimers and in heart failure.
I am so scared for her and for us.
There are so many aspects to this Bill that are devastating and dangerous to NDIS participants. There will be a domino affect to carers. I urge you to stop this Bill or at least slow down the process so that it can be properly discussed with community consultation,
Many thanks