NDIA Accountability Project

Managing multiple health conditions with NDIS supports

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

Submission 171

Submission by Rosemary Ainley for the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Date: 11 July 2024

To the Community Affairs Legislation Committee,

Thank you for providing the opportunity for me to provide a submission for your review of the National Disability Insurance Scheme Amendment. I have been an NDIS participant since 2020 and the supports I have received have made a big difference to my health and quality of life.

About Me

I live with rheumatoid arthritis, ankylosing spondylitis, type 2 diabetes, spondylolisthesis and fibromyalgia along with other related health conditions. Most of my symptoms can vary in severity, sometimes over many months and sometimes within a single day. They can include severe joint, muscle or nerve pain, inflammation, restricted movement, fatigue and side effects of medications. They can also have compounding effects on each other. As a result, I cannot work full time or have fixed hours as I never know what my functional capacity will be like each day and I need time to attend many medical appointments.

Fortunately, I have a job that allows me to work part-time from home with very flexible hours. Thanks to my NDIS plan, I have supports to help me keep my home clean and my garden tidy. I attend weekly physiotherapy sessions which help me greatly with core strength, balance, flexibility and mobility. I have also received funding for home modifications and aids and equipment. Some of my providers are NDIS registered and some aren’t; however, I trust them all and I want to continue to choose the best suppliers for my needs.

My Thoughts on the Proposed Changes to the NDIS Bill

I have followed the information shared by Every Australian Counts and People With Disability Australia and read the explainers written by the Justice and Equity Centre. I applaud the changes that have already been made to the original NDIS Bill but I believe more needs to be done to ensure the final Bill is fair, inclusive and practical. Therefore, I suggest the following changes be made:

  • There must be a legislative requirement for the NDIS Minister to co-design the definitions of NDIS supports and legislative instruments with people with disabilities and disability organisations. The co-design team must include at least one First Nations representative along with a broad range of representatives from disability and CALD communities. The Minister must also provide the Federal Government with regular statements clearly showing the range of people consulted and the way their suggestions have been sought, analysed and implemented.
  • “Reasonable and necessary” needs assessments and plan budgets must consider individual applicants’/participants’ needs and circumstances. These people must also be told which of their impairments meet disability or early intervention requirements.
  • Participants must have the right to at least one replacement assessment and this right must be embedded in legislation.

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

Submission 171

  • The final Bill must include further amendments that clarify how the NDIA can seek further information, such as medical assessments, about participants. I believe participants already share enough information about the permanent impairments leading to their disability/disabilities when they apply. While the consequences of these impairments can vary over time, the impairments are permanent so why should people have to prove them again? Also, gathering such information can be very costly, difficult and exhausting for participants. I believe that if the NDIS requests further information, such as medical assessments from the participants’ healthcare team, the NDIS must also pay all the costs participants incur when obtaining such information and provide practical supports to help participants achieve this.

  • The proposed restrictions on obtaining supports, spending funds and organising plan management need more clarification and safeguards. These restrictions should only be used when reasonable and necessary to achieve the purpose of the NDIS and avoid undue burdens on participants.

  • I support the requirement that a comprehensive review of these reforms should be conducted in 5 years and the review must be co-designed and managed with all stakeholders, especially participants.

I trust the Committee will take my comments for this review into account and I look forward to seeing the review outcomes.

Yours respectfully,

Rosemary Ainley