NDIA Accountability Project

Impact of proposed changes on children with multiple and interrelated disabilities

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National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 76

I am a mother of two participants growing up with support provided through the NDIS.

The Scheme has been life changing for my family. NDIS funding has enabled my children to have a far better quality of life than we could have provided for them. They have had access to a range of high quality, evidence-based therapy and supports that have made their life less different to their peers than they would have been otherwise.

I am excited by the trajectory my children are on. Before NDIS I worried that they would have lives of exclusion and isolation. Now I see potential for them to move out of home, find meaningful employment, and hopefully develop a network of friends.

I am not a lawyer. But I am hearing from people much cleverer than me that the proposed changes to the NDIS Act will disadvantage my children. No parent wants to hear that human rights will be overruled for budget savings.

It is in your power to slow this process down and get it right.

  • The government’s description of its proposal legislation is vague and misleading. I don’t believe it accurately presents the likely outcomes of the proposed changes.

  • I am concerned about the drive to fund based on primary disability, despite the recommendations of the NDIS Review. On paper, both of my children have the same primary disability. In reality, you could not find two more different individuals. Both have multiple and interrelated disabilities that make their support needs totally different. A future where only a primary disability is funded significantly limits potential outcomes for my children.

  • I am concerned about the proposed list of exclusions that will be decided by government, and cannot be challenged as they are protected from review. Every person’s needs are different.

  • I am concerned about the proposed assessment tools, allegedly yet to be designed, as we do not know whether they will be fair and equitable

National Disability Insurance Scheme Amendment (Getting the NDI Back on Track No. 1) Bill 2024

Submission 76

especially for autistic children. Rumours in the autistic community assert that these tools will be specifically designed to exclude autistic children from the Scheme all together.

  • I am concerned at the idea that the rules and operational guidelines will be decided by government officials, and cannot be challenged or contested by people with disability who are the most impacted.

  • I’m not convinced that the legislation will solve the problems that autistic people are currently having with the Scheme. I am also not convinced that the proposed changes will deliver improved outcomes for autistic children.

The NDIS has had a real impact on improving the lives of disabled children and their families and this needs to be protected. I would like the government to genuinely collaborate to achieve those outcomes.

I am writing to implore the Senate Committee to slow down the proposed changes and listen to the passionate advocacy from the disability community.

  • Please listen to the Participant Reference Group that the NDIA has hand-selected to represent the voices of participants.
  • Please listen to the Independent Advisory Council who work tirelessly to put forward solutions to the problems that the NDI is facing.
  • Please listen to parents like me, who only want a positive future for our children. We thought we had that future secured, and now all trust is gone.

Please reconsider any changes that might lead to children and young people with disabilities being evaluated as budget implications, rather than holistic human beings with an enormous potential. Their lives matter.