Submission 1634
Dear Senate Committee,
My name is Bramble Karvinen. I have been on the NDIS since the test rollout in my at-the-time location of Newcastle, NSW. I now reside in , though I am in the process of updating my electoral roll location and name since marrying.
Myself and many of my friends rely on the NDIS for basic life tasks, and we have some deeply pressing concerns about this new ‘Securing the NDIS for Future Generations 2026’ Bill. So far, these concerns have been addressed in only the most alarming manner. In this letter, I will be addressing these as an individual rather than representing others, but these fears are shared widely among my peers.
I have to state off the bat that I staunchly oppose the proposed changes. There isn’t a single meaningful change that does not, to my understanding, break either the core tenets of the NDIS or actively go against the United Nations’ Conventions on the Rights of Persons With Disabilities. Many, in fact, are in direct opposition to both. This is a proposal that, if taken at face value, has the means to harm large parts of the Disability community with the same callous automation that caused the Robodebt deaths and subsequent scandals.
Each of the major changes individually would be troubling, but in conjunction with one another, the situation is dire. They will be life-destroying. In many cases, they are likely to be fatal. This is not hyperbole: many people I know with psychosocial disabilities, intellectual impairments, or physical impairments and work or study — tese demographics will lose their capacity to meaningfully participate in a normal life, which was the founding tenet of the NDIS. Some of them will simply become bedbound/housebound. Others are at significant risk of neglect or suicide, because their only means of social intervention relies on NDIS supports. Many will become unwell in ways that the Medicare system is not equipped to handle. That would be with only the 50% cut to social and community participation funding that the government is proposing to roll out this October, but those are far from the only cuts and changes the current government is intending to make.
Many people in the Disability community are also part of multiply marginalised groups, and the concerns we have are manifold. Poverty is an enormous gatekeeping factor in something like this. “All appropriate treatments” is alarming for what it represents: those too impoverished, or too remote, or too disabled in other ways will have no means to apply for NDIS support, because all “appropriate treatments” have not been undertaken, regardless of access to these things.The fact that “all appropriate treatments” no longer specifies that the treatments must have the same or equivalent results is also concerning, as it leaves a lot of people with psychosocial or intellectual disabilities poorly served. If, of course, they can be served at all under the proposed bill, given that transport to appointments for diagnosis or treatment will be expensive and unobtainable. In addition, if they must reliably be expected to materially improve a person’s condition, that leaves out those
Submission 1634
whose conditions are degenerative and for whom treatment is a means of mitigating the effects of some deterioration. There is no treatment that can “materially improve” the circumstances of someone with late-stage Multiple Sclerosis, but the condition being treated can lessen a little of the speed at which the condition deteriorates.
There’s more. There is so much more, more than I can address in one letter, but I need to say more. The idea of only one’s primary disability being the basis for assessment is a problem as many disabling traits occur at the intersection of issues — Ehlers Danlos Syndrome is often co-occurring with Autism and with things like Chronic Fatigue Syndrome, Attention Deficit Hyperactivity Disorder, eating disorders, Mast Cell Activation Syndrome, chronic Cerebrospinal Fluid Leaks, etc., and it is the interaction of these things which forms a life of unsustainable, unemployable, incurable disability. If one were to only undergo treatment for, say, Mast Cell Activation Syndrome, that would not treat any of the other co-occurring conditions. In addition, two entirely unrelated conditions — eg a T2 fracture causing quadriplegia and an Autism function level 3 diagnosis — might both require treatment, but with only one being taken as the primary disability, this would prove to be an impossible balance.
Part 34 of the current Act states: Note: For the purposes of paragraph (aa): (a) the time at which the disability requirement or early intervention requirements need to be met is the time the CEO decides to approve the statement of participant supports; and (b) a participant’s disability support needs arising from an impairment in relation to which the participant meets the disability requirements or the early intervention requirements may be affected by a variety of things, including environmental factors or the impact of another impairment in relation to which the participant does not meet either of those requirements.
Without this clarification, only the primary disability’s impact, in a vacuum, is required to be taken into account. Again, with the complex lived experiences of participants, The notes on these intersections are not only ‘not required’, they are — thanks to the automation of the system — no longer considered relevant. The proposed bill’s 34(1)(aa) refers to the support needs “arising directly from an impairment or impairments”.
In my own position, I am a multiply Disabled person. I use a wheelchair full time, but my initial diagnoses and my primary disability according to the current records is a psychosocial disability. I am Autistic, mentally ill, and have multiple physiological issues, from minor spinal damage to a twisted leg to severe pain caused by Ehlers Danlos Syndrome compounding with all of these things. As a result of these compounding issues, I receive funding to live in Specialist Disability Accommodation — Fully Accessible category, north-east city suburbs, as well as to maintain my wheelchair.
Submission 1634
If my primary disability is reassessed — suddenly, at any time, without my knowledge, as the bill is intending to make possible — I could become homeless. Due to my high support needs and my wheelchair usage, there will not be anywhere for me to go. None of my friends have wheelchair accessible housing. None of my friends can take care of me on short notice the way the 10-to-1 model I currently live in allows for. There is a significant chance that, without appropriate housing, I will lose all of my belongings, become unmedicated, and end up either dead or in the hospital. That is the very real fear I am currently living with, watching my community turn against me because of the framing of this Bill as a way to cut costs of supposed participant fraud.
I am Disabled person whose only desire is for a safe, dignified life. I ask of you, as someone with the power to protect me and my peers, to please strongly reconsider this bill. Vote against it in the senate. It is entirely inhumane, and people in my community will suffer — as will all of those connected to us. Please feel free to publish my name with this submission.
With regards,
Bramble Karvinen.