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

Submission 2269

My nephew has Down Syndrome and has lived at home with this disability for 26 years. Currently he attends the following programs each week:

• Gym – two sessions (support worker needed to take him there and back)
• Life skills, performance and music at a specialised centre – two days
• Social outings – one day (support worker needed)

Ultimately his parents aim for him to live in a supervised group home.

It has not been communicated clearly how changes to the NDIS will affect my nephew. It seems that people with Down Syndrome will be disproportionately affected as much of their support is for social and community type activities. If this was the case then it will result in him only being eligible for gym activities. He would have to spend the majority of the week at home with supervision as he is only able to be on his own for a few hours a day. This is not a good life for anyone – disabled or not.

As with many syndromes, Down Syndrome is a spectrum. My nephew’s capabilities are good in some areas but with socialising he is not as confident due to his poor speech. The proposed standardised assessment tool to determine a person’s NDIS access will not pick up differences between people with a syndrome which is a spectrum of deficits. If this is automated like Robodebt, it is a recipe for disastrous assessments and will actually create more work for public servants and carers in the long term.

Both of my nephew’s parents work and support him in all aspects of his life but they are getting older and need certainty about the level of support that will be offered to their son. Currently he is supported by three casual carers and staff at a disability service provider as noted earlier.

In the past my nephew has benefited from capacity building support including life skills, cooking skills and he attended TAFE. He also had support for activities of daily living e.g. how to cut up food, how to shave and had speech therapy. Before the NDIS his parents paid for many visits to a speech therapist. Skilled people are needed to teach disabled people these skills as they may not be receptive or actively object to family trying to teach them.

It is unfathomable to me that AUKUS funding is not questioned, has had no review and in all probability will mean Australia never gets a submarine yet support for the most vulnerable people in society is severely cut with the aim of cutting funding for 160,000 people. Currently there is no replacement support for these people as the state governments have basically cut all disability services and it will not happen in the time frame proposed for the NDIS cuts to be implemented. Just because a person is no longer on the NDIS does not mean that their disability disappears.