National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3542
My name is
Hi
I’m known as and I am the parent of a 46 year old beautiful man with very profound multiple disabilities which includes cerebral palsy, intellectual disability, deaf and legally blind and he has many health concerns due to these disabilities. He was - injured by a virus in pregnancy called cytomegalovirus.
despite all these disabilities and challenges he is very content and happy. What has added greatly to his beautiful disposition is the level of care he receives thanks to our worlds great NDIS scheme.
lives in SDA housing which has secured his future or so we hope. I am Mum 71 years old and Dad is 76. He has one sister 47 and a niece who is 19. His informal supports are small as you can see and his sister and niece are busy working people. His- housing is working so well. The heart of the NDIS scheme which allows for choice and control in my experience has been the solid foundation of my son's care and how well it is working. Together with the care workers and flatmates Mum we work as a team. lives with one other person with very high support needs as well. Both families were involved in that choice. If any of his basic care was reduced his health and -
well being would suffer greatly. I don’t understand many of the proposed changes but - capacity building looks to be an area that might be hit. This especially his allied health needs are so important for his well being, skin integrity and all that goes with this level of care need. Community access has been mentioned. community access is such a big part of his life. All mobility has been robbed from him, he can’t see or hear properly. So television, technology or any of these activities are closed to him. The life - his has at the present meets his needs. To reduce would make his life more difficult. We are aging parents so for us to have to take on more is reducing and one day in the not so distant future could end. That was the greatest gift the NDIS has given us is the ability to die in peace. Please don’t take that from us and other families.
One thing I feel very strongly about and I believe a big mistake is to put these changes into law so quickly. I really don’t understand them and we have been given very little time to translate them into our world and make a submission based in fully understanding them. I’m 71 and have lived as a full time carer for 42 years and part time for the last 4. I would appreciate time to understand these proposed changes as those of us who live this situation on the ground have valuable insight and if Government
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3542
would co design with us I feel strongly the best outcome would occur. A lot of us went to early meetings regarding a whole new idea many years ago and thought WOW. We are invested in the NDIS for life. I met a wonderful lady a few weeks back 91 and still a carer. There is no retirement from this role. And for those with disabilities with capacity to work due to the NDIS support how good is that. Listen to what they have to say.
I hear the issue in regard to fraud and would love to see it stamped out but unfortunately it happens in all good schemes but trust us families and people who can manage their own affairs to be in the lookout and don’t do business with dodgy people.
Please hold off putting anything into law regarding this proposal. Let the NDIS participants who are able and the families of those who are not able get their head around what you are saying and value that experience. In our son’s home there are 3 parents and there is 120 combined years of experience and I believe it contributes to the smooth running of the house. We have terrific carers who love their job and create the best lives our two residents have in spite of their enormous challenges.
Please hold off changing any laws just yet. This is still a new scheme by standards and its peoples lives. Disability can happen to anyone at any time and for many it’s life long.
Please leave choice and control at the heart of the scheme. It works for all involved.
Thank you for the opportunity to have a say
Regards