Submission 2032

To whom it may concern,

I am writing to you as a disabled person who is a carer for an NDS participant.

I am not a NDIS participant myself, but as an autistic person with chronic pain, I am a member of the disability community and understand how important it is to have suitable supports to live an ordinary and dignified life. I mention this to acknowledge that there are many disabled people who support loved ones who are NDIS participants, so cuts to the NDIS also impact non-participant disabled people and their own ability to manage their disability.

This submission will primarily focus on the support needs of my Dad. He is an NDIS participant and has Huntington’s Disease (HD), which is an inherited degenerative neurological condition. It impacts mental and physical abilities, and there is no cure. My Mum is his primary carer, and I help care for him.

Proposed Change Impact on my Dad

Evidence will be required HD has no cure. There is some research being done around the ‘Permanence’ of a person’s disability. There will be a requirement to exhaust ‘all appropriate treatment’ before NDIS eligibility is confirmed.

                                                  It is unclear as to whether the therapies he is currently using would count as ‘all appropriate        treatment’, or if there would be an expectation to access experimental treatment to continue NDIS            access.

Reassessing all existing My Dad turns 65 in 2029. He became a participant at participants from 2028 when you are under 65, you can remain on the NDIS as you age.

                                                  I am very concerned that in the reprocessing of              participants, he will instead be pushed into the Aged               Care system, rather than being able to continue on                the NDIS. This would likely result in changes to                 supports and a significant administrative burden on                  my family.

Submission 2032

Cuts to social community participation supports

Currently, a support worker comes two days a week to support my Dad. It took a while to find a support worker my Dad got along with and enjoyed spending time with. They help him go to appointments, but also they hang out and chat, and go to lunch. The social aspect is particularly important for my Dad, because practicing talking is important for maintaining his communication skills.

Cutting this support worker time would have a direct negative impact on my Dad, as he would lose this important social connection and way to be independent.

Secondarily, this would increase caring responsibilities for myself and my Mum, increasing our stress and compounding my existing disabilities.

Fewer unscheduled plan reviews on request. Need to show a “significant” and “ongoing” change in support needs to get a review.

My Dad’s condition is degenerative. His mobility, communication and cognitive skills are gradually decreasing. Because these changes are gradual, I am concerned that if his support needs change it won’t count as “significant” enough to get a plan review.

Automatic plan renewals instead of regular full reviews

As my Dad’s condition is degenerative, his support needs can increase as time passes. It is important that regular full reviews occur so his plan can adapt to his changing needs.

Shorter time periods for lodging claims (from 2 years to 90 days)

In addition to caring for my Dad, my Mum runs a household and supports two other disabled family members. Adding a strict claim timeline like 90 days adds administrative burden, and we will pay the financial costs if the 90 day window is missed.

Automation of administrative decisions

2024-25 stats indicate that 2400 people in Australia have HD, with 1100 on the NDIS. This is a small cohort of people. I am concerned that any automated processes would not be suitable for rare health conditions like HD.

Submission 2032

I do not support this bill, and I strongly recommend that the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 is blocked in the Senate.

I acknowledge that reform is needed in some areas (e.g. to reduce provider fraud, reduce unnecessary administrative costs), but any change needs to be done with extensive co-design and consultation with the disability community to ensure supports are maintained for participants. This consultation must be done before the bill is tabled in parliament, not as an afterthought. Given the complexity of the proposed bill, I would recommend a minimum of 6 months consultation period before a future NDIS amendment bill be tabled.

My Dad deserves support and dignity to live his life. Cuts to the NDIS will negatively impact him and my entire family, exacerbating disabilities of other family members including myself due to increased caring responsibilities.

Kind regards,