Submission 3545
SUBMISSION AGAINST THE PROPOSED NDIS BILL
I refer to the various amendments being proposed, that will affect all NDIS participants, of which my 33yo daughter is one. I speak on behalf of my daughter as she is non-verbal as well as cognitively unaware of the system she is part of.
We strongly oppose virtually every change proposed. Due to my daughter’s extreme functional incapacity (she is assessed as functioning as a 12-18 month old in a very adult-sized body), I have zero concerns about her being removed from the scheme. However, I do sympathise greatly with those clients now facing the burden of proving their “worthiness” - or lack thereof to society as seems to be the requirement! But for the sake of brevity I shall just address the 2 issues of most concern to us personally.
Brief background beyond details already provided …. my daughter is diagnosed with severe undefined Intellectual disability, L3 autism, ADHD, anxiety, sensory processing difficulties and challenging behaviours requiring approved Restrictive Practices. I have been her sole carer her entire life and have had to sacrifice my career and quality of life to provide the necessary level of care. I am ageing and have had cancer, which hasn’t prevented the NOIA from treating me in the most
Submission 3545
distressing and debilitating manner imaginable.
While on the NDIS, we have sought 3 plan changes - funding for STA at 2:1, minor home modifications valued at $4k, and recently, SDA and SIL. Each time, the NOIA has repeatedly rejected our requests, and each time we have had to resort to the AAT / ART process. The results have all gone our way, but at a cost of 5 years of my time, inexcusable levels of stress, and hundreds of thousands of dollars in administrative work, necessary assessments and law firm assistance. Sadlly, the tribunal appeal process has been the only way we have been able to secure my daughter’s substantial, but necessary and reasonable, supports. All of this experience within the NDIS leads me to conclude that the agency’s internal operations and processes are BROKEN. I would enjoy the opportunity to discuss better and more effective reforms that should be explored rather than those in the current Bill, which notably has not been formulated in consultation with members of the disability community. How completely counter- productive and ludicrous is that!! Labor, do better!
Specifically, I strongly object to the Minister of the time having unbridled power to cut funding in any area and for any cohort of people, without appeal. That is unconscionable. [The thought of a Dutton=type person holding this power is indescribably scary!] And using this power for the 50% reduction in Community
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Participation as is proposed, has disastrous ramifications. Even though our 1 :1 funding would mean no savings whatsoever in our plan from this measure, it will take away my daughter’s only source of enjoyment. She has no indoor interests or capabilities and relies on hours each day spent out, away from home, on very long walks (1 Skms/day) and occasional visits to lunch venues to indulge her other passion, for food. And as she can only live alone (with a SW), there is great risk of increased isolation which in turn, triggers her anxiety and harmful challenging behaviours. It is obvious that this measure was devised by someone with no lived experience of disability or knowledge either. Our recent tribunal struggle for appropriate CP had better not be in vain.
Alongside many others, my prime concern is with the targeting of non-registered providers as if they are the source of the rampant fraud being committed. I’m quite certain this assumption has been evidentially disproven and attention should be directed more at those registered providers who are rorting the system instead. In our case, there’s no point having funding if there are no providers to do the support. And that is my experience over the last many years with about 6 large organisations - they either cut shifts, staff them incompetently or relinquish service agreements altogether, due to staffing issues. S.A.’s largest disability provider is, to this day, unable to fulfil 15 hours of
- Submission 3545 support per week. I’ve had to employ several private SWs to ensure continued services and familiar, knowledgeable and willing workers being content to support my daughter and her many challenges. Requiring those sole traders to become registered is too onerous a burden that would inevitably lead to most of them leaving the sector. Our private workers have almost literally saved our lives on multiple occasions …. with their desire and flexibility to provide reliable support while I’ve attended cancer operations and treatment, been with my parents in hospital at the times they each passed away, attending various funerals, and even taking an occasional holiday. These sound like normal occurrences for most people, but for us they would be impossible as my daughter cannot exist in such sensitive environments. Additionally, all of our private workers are ex-registered company employees, some have received the training and experience necessary to now operate independently. They are trustworthy and reliable, which stands in complete contrast to random workers assigned to us by the large providers. With a plan manager, there are also 2 levels of scrutiny over invoicing. No fraud here!
Another consideration is that my daughter has no friends, no ability to make friends or even understand what a friend is, no social connections, and no family network apart from myself and her sister who works full time and lives reasonably far away. Her only
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Submission 3545“relationships” are those with her familiar and kind-hearted workers. All above board obviously. They remain professional in all respects, but the enjoyment they experience being with my daughter is somehow recognised and reciprocated by her in ways that don’t occur within large organisations. Losing these private workers due to registration requirements would be totally disastrous to her quality and enjoyment of life.
I could write a thesis on the failures enclosed within this new Bill. This submission is as succinct and abbreviated as I can make it. I implore the people responsible to thoroughly reconsider this Bill and engage in consultation with the disability community on an appropriate and cost-saving way forward.
I am contactable for any queries and am comfortable with my name being published as necessary.
Thanks for your consideration/action on this matter of importance.
Submission 3545
27/5/26