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

Submission 255

To whom it may concern The current proposed changes as a result of the NDIS review are extremely concerning to me as a participant. The below points are my top concerns and reflect the concerns of others within the disability sector I have personally discussed these with. After such a long costly and somewhat limited review, it is deeply distressing that this is what has made it to the table of discussion, which I feel has needed extensive specialist interpretation and has not been accessible, transparent or in simple English limiting the a lot of those impacted from understanding or having a say.

• Co-design is not required: The Bill now requires the Minister to consider co- design principles, but it doesn’t make this a legal requirement. Without input from those who it directly impacts I can only guess that this would be an intellectual financial equation which defeats the fundamental purpose of such a service provision. Guessing at the needs of people is dangerous and inhumane. If I am told what my needs are and this is not true for me, how is such disparity resolved? This literally makes my life political and able to be traded as political power and sway disconnected to the human I am.
• Does not take a Whole of Person Approach: The Bill may not fully account
  for people with multiple and interrelated disabilities, which could lead to inadequate support.
• Unclear review and appeal rights: The Bill lacks a clear way to appeal and
  replaces my needs assessment.
• Broad powers to require assessments: The Bill provides the.NDIA with broad
  powers to require medical assessments, which could be difficult to obtain. I currently struggle with the lack of available, good efficient service provision, and to get diligent reports. The need for repetitive assessments that cost a lot and provide only a tick in some box, so I can get to the things that are fundamental for my support. If you have to move state or region these are difficult because of the lack of time professionals have to read long complex and intricate medical reports to gain an overview of a new client. Doctors who have known you for a long time also retire, die and move on which is another report requirement challenge. Maturity of assessors is also important and a valid factor in getting a truely accurate reflection of a persons needs. You can wait months for overloaded assessors to finalise required reports and all the while your life is on hold suffering and degrading.

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

Submission 255

Limits on Support and Spending:

The Bill gives the NDIA a lot of power to • control how participants use their funding, reducing participant choice and control. A major marketing point was choice and control, without this it is as good as useless. I save thousands on my allocated plan by having the ability to choose. It struck me as bizare to be asked why I had not spent all my funding when the answer was I don’t have to pay ridiculous administrative cost and can purchase what I need on special and be creative in what is time saving devices rather than extensive invasive human labour.

Punitive measures:

The Bill gives the NDIA new powers to change how • participants’ plans are managed and raise debts if they decide funding has been misused. Which is fair if clear unlawful spending is the case, but this should be legal and clear to participants. Rising debts with participants when there are not clear guidelines, has a robo debit flavour to it, and this power has the ability to be exploitive and impact lives unjustly. There also needs to be a clear path of appeal for these matters that allows for a broad consideration in light of choice control, fair and reasonable guidelines.

As a participant it is disturbing to be wondering if my living circumstances and conditions are going to be dictated into the future when it has been such a struggle for past and present members of the disability community to get to the level of humanity that we currently have. It is degrading to think of my life being used for political sway and government ministers playing with numbers and ideas without the input of those whom are directly impacted. As a community member of the disability sector it is loud and clear to me that there are obvious, intelligent and creative solutions that are not being heard or considered and I would ask, what then is the agenda being sort if not for the betterment of all? If I personally had been able to get what I needed when I needed it without needing to jump through so many process and procedure hoops, I would have been all I could be and a positive contribution to society YEARS sooner. This in itself is a disgrace that is not mine but belongs to a system, which right now has the possibility to make a difference, that reaches all Australians both in the scheme and funding this scheme. So those creating this scheme please hear what you have asked for FEED BACK and make good of it.

Yours sincerely

P.Aplet.