NDIA Accountability Project

Youth member's concerns about co-design and disability representation

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

Submission 294

My name is Ellen Gould. I am a youth member of the Participant Reference Group for the NDIA. This group is repeatedly told how important we are to the future direction of the Scheme. We also hear a lot about the importance of “co-design.”

Isn’t it disappointing then that the first time the Bill was discussed with us was after it was tabled in Parliament. Isn’t it disappointing that as representatives of the 650,000+ participants, we weren’t trusted to even know it was happening, let alone have an early briefing. By leaving the PRG out of this process, the message is that the Government will make all the decisions, and don’t want people with disability to be represented at all.

How is it possible that voices of people with disabilities are not central to this change that fundamentally impacts our lives?

How is it possible that the media think the NDIA is consulting closely with us?

I’m writing to you because I am 20 years old, and the NDIS will impact my future for a very long time. I need it to work. I need you to make the amendments that will protect the NDIS Act so that it can do what it was intended to do – making it possible for people with disability to live a life as close as possible to the lives other Australians take for granted.

I respectfully request the Senate Committee:

  • Please do not let this Bill proceed until it includes a commitment to real co- design with people living with disability. Otherwise having consultation groups is just a farce.

  • Please do not let this Bill proceed while legal experts within the disability community are very clearly telling us that it does not uphold our human rights under the UNCRPD.

  • Please do not let this Bill proceed without fixing the issue of ‘primary disability.’ I have multiple disabilities that are interrelated. I do not want a bureaucratic nightmare of spending the rest of my life arguing about which of my disabilities are funded and which are not. I am disabled. Treat me like a whole person, not like a maths equation.