Submission 1957

Dear Committee members,

It took me two years and three applications to be granted access to the scheme , even though I was always eligible, because my condition didn’t have an automatic diagnosis access. It took significant functional assessment evidence and documentation of over 10 years of treatment to gain access, so it seems an unreasonable burden to be given again through a new needs assessment. My condition is degenerative and over the last three years my capacity building funding has enabled me to prolong that degeneration. it frightens me to imagine that funding to be cut to a level that speeds up that degeneration in my body , puts me at risk of being bedridden and cuts me off from social contact.

Automating funding decisions risks amplifying such harms across the system. There must not be a requirement that functional capacity be assessed without reference to the person’s environment and personal circumstances. Were these proposals decided on by people with no contact or experience of disability in any shape or form ? I feel the writers of this legislation are so disconnected from my reality.

I feel that over the last few years, the consistent government dialogue to media and discourse around “cracking down,” “cost blowouts,” “sustainability” and “over servicing” has created an inaccurate, manipulative narrative as a ploy to brainwash society and villainise NDIS participants.

The legislation must not grant the minister new powers to cut participant funding and expand the use of automated decision-making. All elements of section 31 must remain in the NDIS Act in their current form.

This proposed legislation is an attempt to redefine disability through a new fiscal- administrative framework built around standardized scoring, threshold systems, actuarial logic, and operational governability leading to cost displacement. It is not reasonable that diagnosis no longer protects you from administrative reclassification.

The proposed reforms must not say participants should undertake “ appropriate treatment“ before impairments are considered permanent because this creates a hidden exclusion mechanism whereby treatment may still be considered “Ndis appropriate” even when unavailable, unaffordable, geographically inaccessible,

Submission 1957

waitlisted, or unsuitable. What if that law leads to the implication that any disabled person currently on the scheme could be removed and required to trial a ‘ treatment’ that’s new to the market when in reality it would only assist a person to manage symptoms not reduce or eliminate disability.

There must not be ‘ no human interaction or intervention’ after a needs assessment leaving only another needs assessment as the only recourse for a participant. Whilst the adversarial legalistic brinkmanship and brutality of ART is deplorable, from personal experience, it’s still fairer than the proposed legislation.

The proposed amendments for social civic and community participation will have significant impacts on my already underfunded plan. It certainly seems the intention of the government to transition towards group based services, which I can confirm would be intolerable, unhelpful , would not address my needs to get out in community in my wheelchair , get to appointments , get to therapy, drive me to locations I’m unable to drive myself to in addition to the fact I’m not looking for a hobby group or an interest group chosen by a registered provider, to participate in with other unknown people with dissimilar disability.

It’s incorrect the proposed reform goes back to the original intention of the scheme , these proposals will not do that because the entire purpose of disability support with human rights is to prevent harm, reduce crisis, increase participation and allow disabled people to live in the community with dignity which cuts , exclusion and expulsion will not achieve. The cuts aggressively target vulnerable participants rather than effectively addressing structural waste and criminal systems. Government wastage or consultancy firms private providers, bureaucracy and government contracts.

I already have considerable allostatic load and emotional damage from the pervasive invalidation from ndis, disrespectful & non transparent procedural experiences of being a participant , AAT experience, wait on approval for wheelchair for over 12 months ( still not approved) in minimal years on the scheme. The proposed legislation is further extraordinarily detrimental to me and disabled people that I cannot understand the humanity of government, their lack of genuine responsibility or respect for disabled persons to the extent I feel like I’m living in some dystopian, unreal world that I just want to wake up from. It is not seeking attention just an authentic realisation that voluntary assistive death is a pathway to investigate by participants because just surviving &

Submission 1957

needs not being met by NDS plans rather than living a fair life, is just too difficult with the proposed harmful legislation.

You will read other submissions which critically examine the proposed reductions and implications and they will provide reasoned arguments in addition to alternatives that still deliver genuine sustainability which should be read with diligence, however my submission is trying to draw upon my authentic lived experience in simple language, from a person in midlife catapulted into a high level of physical disability.

Nevertheless, I raise my serious concerns and request for a Senate enquiry and a halt to this legislation in current form until genuine co design is had with disabled people.

I sincerely hope all these submissions are listened to and addressed.

Regards