Submission 27
National Disability Insurance Scheme Amendment (Integrity and Safeguarding) Bill. 2025
Background
I have been dealing with the NDIA / NDIS since 2016 as a Self-Manager of my son’s NDIS
Plan. My son has Intellectual Disability, Impulse Control Disorder, Anxiety, Depression and
Autism. As a Self-Manager I have managed to find and coordinate a quality team who work with my son and we are finally seeing the fruits of the hard work being put in with small gains being made which will hopefully eventually help him to live a more Fulfilling, Productive and an Independent life. Something many in society take for granted, while I say small gains, for my son they are quite significant and that is down to his Support team which must be noted.
In 2025 his Father, my husband was diagnosed with Parkinson’s Disease and became an NDIS Participant. I also manage his plan quite successfully I might add. It has taken a while to get a Quality Team around my husband which has been so important given his condition is only expected to worsen not get better. I have become very knowledgeable about all the rules and regulations we need to abide by and have never had to come back to the NDIS to say sorry We’ve run out of funds. I am doing this while also contending with a brain tumour which affects my balance as well as being diagnosed with Epilepsy. I have a Bachelors Degree in Disability Studies so am passionate about the rights of people with Disabilities while fully acknowledging that with those rights we have a responsibility to act in appropriate ways when it comes to how funding is being spent.
Integrity and safeguarding:
It is clear that the NDIA has lots of issues when it comes to Fraud and Accountability, most of the reporting seems to be Providers thinking the NDIA is their own personal cash cow. It has been heartening to see the NDIA has been going hard on that scourge and that they seem to be having some success. I am however concerned that the NDIA’s thinking in Relation to Participants appears to be they are all ripping off the Agency and that Self-Managers lack the intelligence, and integrity to appropriately manage Participants Plans and follow the NDIS Legislation. While the may be some Participants or Self-Managers not doing the right thing either wilfully or because they are failing to understand their responsibilities, then that needs to be addressed, it should not be presumed we are all doing the wrong thing.
New “Right Supports” Definition: I am personally extremely concerned with the NDIA implementing a change to only rely on an assessment tool (I-CAN 6) instead of reports prepared by qualified professional people such as
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Allied Health Staff and Psychologists and or Psychiatrists and even GP’s all of which have not only in-depth knowledge of their areas of expertise but have developed a way of appropriately dealing with individuals such as my son who struggles to talk to people and will just tell people what he thinks they want to hear because he worries about getting into trouble. In watching Senate Estimates the NDIA has stated that in house-staff with no Medical or Allied Health Training will be the ones to administer these tests? I for one have a huge issue if someone less qualified than me will be trying to get information out of my son who struggles to talk to people at the best of times and that actually includes people who have been treating him for years. I have yet to see any data either empirical and statistical, that tells me that the I-CAN 6 is a reliable tool to be used for people with Intellectual Disability. That is extremely concerning. My son is entitled to have properly qualified professionals to assess his needs, I believe pushing this assessment on him using public servants who have no expertise infringes on his Human Rights. As for the NDIA’s allegation that Professional people such as Dr’s, Psychologists, Psychiatrists and Allied Health Staff are biased in favour of Participants, well that is just laughable, no medical professional in their right mind would want to risk losing their licence to practice and quite frankly that is insulting. Additionally, the fact that participants will no longer be able to appeal inadequate plans at ART is deeply concerning as well. It appears all ART will be able to do is refer issues back to the NDIA, that is in essence the NDIA/NDIS marking their own homework. That is neither a fair or independent scrutiny of Plans when there should be openness. Without openness there can be no accountability when things go wrong.
Person Centred Planning:
I find this interesting. In my University Studies, it meant the person being at the forefront of any discussion, decisions about them and therefore their Plans. The change to a strength-based approach which focuses on a Participant’s needs rather than their functional impairments which the Agency is saying will lead to fairer budgets. In order to have a “Strengths-Based” approach logic dictates or should dictate that there is a need to look at an Individual’s Functional Impairment so we can determine what skills the Participant has and what skills needed to be concentrated on. Let’s be honest and call these changes what they are, this is about lumping people into those nice little boxes the NDIA are so fond of. This really frustrates me because when is the NDIA/NDIS going to understand that while people may have the same disabilities their needs can be significantly different.
Funding and Plan Periods: The change to quarterly funding was spruiked by the NDIA as “helping people to manage the funding “ I beg to differ it is about control nothing more nothing less. The NDIA’s blanket approach to this is absurd, if they can see that funding is being misused or Participants are having problems managing their funding there was always the option of the NDIA telling Participants they either need to be Planned Managed or go back to Agency Managed. This
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approach being used now is the NDIA basically saying you can’t be trusted and we know what’s good for you. Highly Insulting.
Provider Rules: As Self-Managers, we are acutely aware of Provider Rules and we make sure the people we hire are acutely aware of not only the requirements and responsibilities we expect from them, but we also make it a requirement that they are aware of what their Responsibilities to the NDIA are too, because if they are not we will not hire them.
Final Statement: We are struggling I am 62 years old with significant health difficulties of my own. My husband is 60 years old with Parkinson’s disease and other associated illnesses he can no longer help me manage our 35 year old Participant. Our son wants to remain living with us in the family home, and we intend to honour his wish to do so. What we need from the NDIA/NDIS is for them not to make our lives that much harder. We believe this bill does just that. My family respectfully asks that this bill in its current form be reviewed, while yes the NDIS needs to be scrutinised and funding needs to be properly monitored, there should not be any negative and/or unintended consequences for participants . Whilst we are stressed and continue to deal with a lot in our household, I still remain quite capable of managing these plans and ensuring both my son and husband get the help they are entitled to ask for nothing more nothing less.
Yours Sincerely,
Mrs. Helen Harrop . BAppSc(DisSt).