Committee Secretary
Senate Standing Committees on Community Affairs
PO Box 6100 Parliament House Canberra ACT 2600 community.affairs.sen@aph.gov.au
16 May 2024
Dear Committee Secretary,
RE: National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Thank you for the opportunity to provide a submission in response to the National Disability Insurance Scheme (NDIS) Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill). I wish to highlight the issues that are most concerning to me about the NDIS Amendment Bill 2024. All views expressed in my submission are my personal ones and what I consider could be improved with the draft amendment.
I am the Founder and former CEO of Syndromes Without A Name (SWAN) Australia. I am a passionate health and disability advocate and a parent and carer for my daughter who has a complex are genetic condition called FOXP1 Syndrome. My daughter has been a participant of the NDIS since 2016 and as she prepares to leave school this year, I feel extremely overwhelmed about what the future will hold for her. We have had a mix of satisfactory plans over the years, but I worry about her future, particularly when I am no longer around or in a position to advocate for her.
Like the estimated 350,000 children born with an undiagnosed or rare genetic condition, my daughter has complex needs. FOXP1 Syndromes comes with a range of disabilities, including intellectual disability, communication challenges, auditory processing disorder, autism, high anxiety, attention deficit disorder, opposition defiance disorder, obsessive slowness, pathological demand avoidance, vision impairment, low muscle tone, just to name a few.
Although I agree with much of what is proposed in the NDIS Review, there are parts of the draft National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 that concerns me. I have addressed these in this submission. A summary of what I consider are key concerns with the proposed Amendments of the Bill are on the next page and have gone into more detail on subsequent pages.
I would welcome the opportunity to discuss this submission further with you.
Kind regards
Heather Renton
- Submission - May 2024 1 of 5
Summary of Key Concerns and Recommendations
Key Issues Recommendations
| 1. Needs Assessments | |
| • Participants should be able to choose their own allied health professional or social worker as theirNeeds Assessors. Their Needs Assessors should then be able to choose the most appropriate tool to conduct the participant’s Needs Assessment. |
- Needs Assessments need to have an option for a review process.| |
| 2. Reasonable and Necessary | | | • The draft Amendment needs to be expanded to clarify what constitutes a “reasonable and necessary” support and that the supports are enabling participants to contribute to society both economically and socially.| |
| 3. Evidence Gathering | | | • To utilise health professionals that a participant is familiar with to conduct medical examinations if required.
- Be more flexible with timeframes as to when the requested medical examination needs to be performed.| |
| 4. Draft Rules and Determinations | | | • The draft Rules and Determinations should be co-designed with representatives of the disability community and available to the wider disability community for comment before the draft Bill is adopted.| |
| 5. Requirements on Flexible Spending and How a Plan is Managed | | | • One-off incidental occurrences of incorrect spending of plan budgets should not penalise participants. Instead, repetitive and/or intentional misuse of spending a participant’s plan budget should be the deciding factor of how a participant’s plan can be managed going forward.| |
| 6. Plan Reviews | | | • Participants can appeal certain aspects of their NDIS plan without compromising other components of their NDIS plan that they are satisfied with.| |
Needs Assessments
The draft Bill does not clarify who will conduct a Needs Assessment. The Bill implies that it will be an allied health professional or social worker with disability knowledge, appointed by the NDI$, who will be responsible for conducting Needs Assessments for NDIS participants. This NDIS Needs Assessor will be a stranger to our daughter. Our daughter takes a long time to warm up to new people and be comfortable in their company. An accurate Needs Assessment would therefore require multiple visits from a Needs Assessor. This will be a costly process, especially if multiple participants need multiple visits. It will also be a very overwhelming experience for her and increase her anxiety. It would be much better to have the Needs Assessment conducted by a person familiar with the participant such as their occupational therapist.
The Bill should state that any assessment tools should be fit for purpose. They should be co-designed with members of the disability community and stated in the Rules (not the Legislation). The Minister has too much power to determine what Needs Assessment tools will be used.
It is important that participants be able to review their Needs Assessment report before it is forwarded to the NDIA CEO for utilisation in writing an NDIS participant’s plan. Reading the draft legislation, it is unclear if a participant can request a new Needs Assessment as part of a review.
The Bill does not allow for an appeals process of the Needs Assessment if there are issues with any components, rather a participant can only request a new one. It is unclear how frequently a participant can request a new Needs Assessment. There should be an option to challenge a Needs Assessment if a participant is not satisfied it is a true reflection of their functional capacity.
Recommendation:
Participants should be able to choose their own allied health professional or social worker as theirNeeds Assessors. Their Needs Assessors should then be able to choose the most appropriate tool to conduct the participant’s Needs Assessment.
Needs Assessments need to have an option for a review process.
Reasonable and Necessary
Whilst I have always believed the term “reasonable and necessary” in Section 34 (1) of the NDI$ Act was open to interpretation, I think there are some NDIS supports that need to be explicitly included in the draft Amendment, such as the right of a person with a disability to work or participate socially in their community. I am also concerned that the supports my daughter may require in the future will not be available to her under the proposed legislation changes, such as assistance with helping her to engage in her community either with regards to getting and/or keeping employment or to support her to participate socially.
Recommendation:
The draft Amendment needs to be expanded to clarify what constitutes a “reasonable and necessary” support and that the supports are enabling participants to contribute to society both economically and socially.
3. Evidence Gathering
I am concerned that if my daughter does not have an advocate with her, the NDIA may request or even bully her into providing additional information about her health condition. Regarding rare genetic conditions, there is a lot still unknown about them, including how they will progress over time. Many of them are also episodic. With specific regards to FOXP1 Syndrome, the first case was only diagnosed in 2009, and little is known about the condition or how it will progress. There are no specialist medical professionals trained in managing FOXP1 Syndrome. We are continually learning new facts about the condition as our daughter gets older.
I am also concerned that the way the legislation is currently drafted, she may be forced to have a medical examination by someone who is unfamiliar with FOXP1 Syndrome and who does not know our daughter or have a rapport with her. If this is the case, she most probably will become extremely overwhelmed and will not even enter the consultation room.
To force someone to have a medical examination within a set time frame when they have high anxiety can be detrimental to their mental health. To have the threat of withdrawing a participant’s existing plan and the suspension of an upcoming new plan, is cause for concern.
Recommendation
To utilise health professionals that a participant is familiar with to conduct medical examinations if required.
Be more flexible with timeframes as to when the requested medical examination needs to be performed.
4. NDIS Rules and Determinations
It is concerning that the disability community has not been given access to any draft NDIS Rules between the States, Territories and the Commonwealth Government. The draft Bill as it stands gives the NDIS Minister new powers to make Rules and determinations that are not required to be passed by Parliament. I am concerned that the NDIS Minister will have too much power to make changes to the NDIS such as what types of supports are funded under the NDIS.
The rules need to be co-designed with the disability community and be available for review prior to the draft Bill being adopted.
Recommendation
The draft Rules and Determinations should be co-designed with representatives of the disability community and available to the wider disability community for comment before the draft Bill is adopted.
Requirements on Flexible Spending and How a Plan is Managed
I am concerned that if a participant or their nominee accidentally or incorrectly spends their support budgets, it may jeopardise how they can manage their future NDIS plans. For example, they may no longer be able to select Plan Management as an option for managing their NDIS plan. Participants should not be penalised for one-off genuine mistakes.
Recommendation
One-off incidental occurrences of incorrect spending of plan budgets should not penalise participants. Instead, repetitive and/or intentional misuse of spending a participant’s plan budget should be the deciding factor of how a participant’s plan can be managed going forward.
Plan Reviews
I welcome the flexibility proposed with NDIS participant’s budgets. However, it is unclear whether a participant will be able to appeal just one component of their NDIS plan. This will mean participants will have to lodge a whole plan review as opposed to just appealing the supports that were not adequately funded.
Recommendation:
Participants can appeal certain aspects of their NDIS plan without compromising other components of their NDIS plan that they are satisfied with.