National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 902
I am writing with concerns regarding the proposed changes to the ndis bill and the negative effects it will have on our son and our family. We are a 5 person family with 3 young adult children. Our middle child M is 20 years old and has Down syndrome. My husband and I work full time.
M still lives at home but plans to move out as soon as he can. At present we provide significant physical and verbal assistance to him every morning and evening, on top of our paid work. This takes approximately 2-3 hours of support. During the day, he has support provided by the NDIS which meets his needs well: he is supported to work part time at Woolworths, to make meals which he can eat unsupervised (he has a choking risk), to attend social skills group, and learn how to use transport and other living skills which will help him to eventually live out of home. Without the NDIS supports M would be at risk of spending each day watching TV, developing problematic behaviours through lack of stimulation and purpose (in the past he has become experimental when unoccupied, such as cooking unsupervised and causing a house fire) becoming overweight and depressed (common issues with people with Down syndrome due to metabolic and physical differences), or spending days in time-filling activities like the old Day Options programs which tend not to provide much meaning. We are unable to give work up to provide increased care for him.
Our family are already under stress with providing ongoing care for 20 years, when most families are expecting their adult children to grow up, move out of home, and generally require diminishing amounts of direct care.
We have never had a holiday away without M , for 20 years, except for 2 nights when he went into “respite” this year. That is a long time to not have time with a spouse to maintain a marriage, and to have some time to relax and mentally not be on “carer duty “.
Don’t get me wrong: we love M dearly and he brings much joyinto our lives. However, we are getting older and won’t be able to continue what we are doing forever. He will need to learn how to be less dependent on us and move out of home eventually with supports from others.
We don’t have family support to help us. We reply on the NDIS to help M to be less dependant on us, lead a meaningful life, and to be a contributor to society. By cutting his services, M risks having a limited life, and becoming more dependent on government services such as mental health services , general health services due to weight gain, cardiac disease, diabetes etc, and contributing fewer tax dollars from his wages, and residential services which cost considerably more, if he doesn’t have reasonable supports to live out of home.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 902
NDIS has been marketed as being a rort: however I don’t see how reducing supports will change the rorting. It just closes the funds for everyone who is doing the right thing.
A side benefit of the NDIS is the employment it has provided to care workers, which has been a benefit for creating additional tax income.
I haven’t worded this very well. I have just sat down at 8.30 after working a full day, and it’s hard to sum up the devastation that cuts in supports will have for M Matt and our family. I fear it is a political action to try and gain votes from a population who has been schooled to think everyone is trying to rort the system, and doesn’t consider the dire consequences it will have on people like us.
I am happy to be contacted to give more details if that would help.