ABN:
24 220 563 122
12th July 2024
COMMUNITY AFFAIRS LEGISLATION COMMITTEE FOR INQUIRY
RE: CONCERNS FOR THE PROPOSED AMENDMENTS OF THE NDIS BILL 2024 “Getting the NDIS Back on Track”
My name is Angela McArthur – I write to you today as a woman and living with both neurodivergence and psychosocial disability. , and as an advocate and independent provider in this space working solely with autistic adults and children, many with common co-existing conditions.
I write to you in reflection of my lived experience of all roles I play in this space.
I am a 31-year-old woman, diagnosed Level 2 Autistic, ADHD with co-existing C-PTSD, OCD and Pre-Menstrual Dysphoric Disorder.
My conditions are just a small number of the co-existing conditions I see in almost every single adult that I work with who is on the NDIS scheme for Autism.
I bring to you my concerns:
- When the NDIS began, it focussed on disability holistically. It looked at the individual and their functional
capacity and the interplay of disability. It did not focus on single diagnosis and single diagnosis only. It is impossible in so many cases to split hairs between symptoms and the ways in which disabilities that co-exist contribute to functional capacity and decline. It is unrealistic and concerning to consider that the amendment may have this focus emphasised, and that persons living with disability will be forced to segregate their diagnoses, as if one is more significant and worthy of support than the other.
- Giving the Government control on how, when, and what supports a person living with disability accesses is
hedging very closely back to the medical model of disability and it is concerning to consider a world again where the Government dictates how we participate in society. Putting us in categories and groups is a breach of Rights and freedom of choice. This solution will not stop fraud. It will not stop non-compliance. If anything, it will see the lives of people with disability put at risk. Controlling groups and providers will only see providers become inaccessible and see reduced capacity, which we already see in the public sector of health.
- Assuming the Government is able to make informed choices around what is deemed 'reasonable and
necessary’ for every individual is also ridiculous. The people making decisions like this are very unlikely to have lived experience enough to offer such options, and we already see this in the NDIS we have today, and it’s not working. The NDIS continue to refuse to allow more people with disability to use their voices and contribute to these changes, so taking the power out of every single person with disability by telling us what WE should use, what WE should have is disgusting.
- Removing the already near-nil ease of access to appeal decisions and request changes is concerning. It is not
viable to expect that the lives of people living with disability will continue on the same trajectory for their t entire lifespan. Therefore, why would the same funding package remain suitable? The NDIS want to talk about functional capacity, but simultaneously don’t want to acknowledge the fluctuating nature of it? Taking away someone’s right to disagree with a decision made about their life, and the things that impact
ABN: 24 220 563 122
their life – that’s just a breach of Human Rights, isn’t it?
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Independent Assessors: straight up, this has removed choice and control. To think that any assessor is skilled, experienced and versed enough in every single diagnosis and disability, the way those disabilities and symptoms fluctuate, and to assert them to a role that will essentially determine the lives of people living with disability… again, the medical model resonates here. It is already near impossible for me to sit in planning and reassessment meetings and explain to NDIS planners and LACs to read the documentation by the specialists that explain the connections between co- esting conditions and their symptoms, to substantiate the participants needs, without having to justify ourselves to an independent assessor with qualifications and accreditations, life experience and compassion that may not be relevant or exist. The NDIS is already failing to adhere to the guarantees and timelines – how are these assessors going to keep up with attending every single participant on the scheme and to complete reports that take hours, before the decline of participants takes place and lives are potentially lost, just like we’ve seen in the current delays with the PACE rollout. Especially if this assessor decides that a participant should no longer receive funding based on findings that may also be irrelevant.
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Assuming that every participant that requires a funding reassessment or boost in funding is committing fraud is small minded and ableist. Again, the fluctuating nature of disability is something that the current NDIS doesn’t seem to be able to grasp. If anything, we need more flexibility here for those who genuinely need this. I am not denying that monitoring of fraud is not necessary, and that fraud is not prevalent, but to paint every single participant with the same brush and to enforce such things on every person, including those doing the right thing, those who are genuine and those who are legitimately too terrified to use their funding for fear of the repercussions… it is beyond me why this is having to be spelt out to the NDIS. This approach will only see our hospitals become full, and the burnout of allied health staff due to the already unmanageable workload. We saw what happened during Covid – and what’s happening now, again, with the backlog from the PACE rollout… how the Government thinks this is the solution is, again, beyond my comprehension.
It is no secret that I have had to send complaints to Minister Shorten’s office for the already abhorrent conduct of some staff within the NDIS space. I’ve had to submit a complaint, which to this day has fallen on deaf ears, for a participant who was sat and interrogated for two hours to justify her disability. She is diagnosed Autistic, Level 2, and I witnessed a planner focus on her functional capacity between the ages of 18 and 20. This participant is now 26 and unable to work and is reliant on her partner, and due to co-existing chronic pain and physical disability, trying to use her funding in a way that is compliant, and beneficial, but because the planner does not understand the physical impact of Autism, and why this person cannot work like she did near 10 years ago, this person has now had the funding recommendations in the documentation presented completely disregarded.
I write today specifically with concern for the autistic children on your scheme, and the autistic adults on the scheme. It is not lost on me, the irony that is NDIS automatically approving a person with the diagnosis of Autism, specifically in the Early Intervention Space because of the acknowledgement of the need for substantial support throughout life, yet NDIS seem to become confused and dishevelled when there’s adults on the scheme needing the same support, because they did not receive that support as children.
ABN: 24 220 563 122
It is concerning to me where these changes will land my fellow neurodivergent community and my fellow psyc hosocia lcommunity.
These changes are inhuman e, and on ly add to th e alread y disappoin ting an d no n -inclusiv e a nd uncompassionated scheme tha t i s currently NDIS fo r persons living wi th ne urodi verge nc e an d psychosocial di sabilit y .
And frankly , it makes m e even greatly concerned f or the future of ou r young autistic children an d chil dr en livi ng with disability .
We ar e so tired o f hav ing to fight for the basic Human Rights that we are entitled to receive, purely because the world wasn’t built for us and the extra support, w e need is somehow too financially unsustainable for the N DIS, as if people are born every day deciding to be disabled to inconvenience our Governing bodies.
I thank you for taking the time to read my submission,
Yours,
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