Submission 1969
“clarify the definition of permanence by introducing the concept of ‘all appropriate treatment’”
My disability has NO known well evidenced treatments or cures. I wish it did, but there is no hope right now, and minimal research working towards anything. There’s no way to prove I’ve done all treatments because there’s no list of treatments. NDIS is constantly denying applications from people with my disability saying that we haven’t done all treatments but they won’t tell us what the treatments are that we haven’t done because there actually aren’t any with good evidence. This is already destroying people’s lives even before the changes currently being suggested, which would undoubtedly make this even worse.
There is a very flawed study that suggests a possible treatment for my disability. Other studies have shown that it can be extremely dangerous and cause severe permanent loss of function. Patient’s experiences also show how dangerous and harmful it is. The national organisation here in Australia has been really clear about how dangerous it can be and most countries are updating their recommendations in line with that evidence but NDIS doesn’t care. Requiring people to undergo this treatment could cause them to lose the capacity to sit up let alone get out of bed, to eat, to think, to be in a room with another person. It is absolutely disgusting to suggest that anyone should risk losing what little quality of life they have just to tick a box to say they’ve tried every treatment. Unfortunately not having access to support can also cause a similar harm over time when people are forced to act outside of their capacity. So we’re left with no good options. Either we try this treatment, potentially ruin our lives, and hope that NDIS fund enough supports that we don’t die when the “treatment” causes us to become completely unable to care for ourselves, or we are unable to access appropriate NDIS supports, we continue declining and losing function due to being forced to act outside our capacity just to sustain life, and we end up in the same place. This will kill people, slowly and painfully. This will leave others requiring 24/7 care for life. This will take people who maybe could have maintained some level of employment or at least community participation, and leave them isolated at home in bed instead. My disability shouldn’t cause death, but without support we can lose so much function that eventually we can no longer digest food and then starve to death. I am terrified that this is my future.
This is even before addressing the aspect of a treatment being accessible, financially, geographically, etc. My disability leaves me homebound and often bed bound. If a new treatment was discovered but I needed to fly somewhere to get it I probably couldn’t do it even if I could somehow afford it. I don’t have access to supports to even take me to basic medical appointments nearby. I don’t have an appropriate wheelchair. I can’t afford to pay much for treatments since the disability pension is below the poverty line and I already have to spend my money on medications plus many supports that NDIS should be funding but I have no choice but to pay for privately because otherwise I couldn’t survive.
All that should be required is for a health professional to state that all appropriate treatments have been trialed and no further treatments are likely to remedy the disability and therefore the disability is permanent. Our health professionals opinions should be what matters not the opinion of an NDIS employee who has no training or expertise and is just going off a generated list without any understanding of the science/medicine involved and without any real knowledge of the individual person. Our doctors shouldn’t have to spend 20 plus hours writing massive reports detailing every little thing we’ve ever done to try and manage our disability better (many of them won’t do it at all, and those that do likely charge more than we
Submission 1969
can afford). Their medical opinion should be what matters, not the opinion of an NDIS staff member who maybe didn’t read or didn’t understand the documents provided.
“clarify the requirement for support needs to be directly related to a participant’s eligible impairments”
I have multiple disabilities with overlapping impairments and no one could possibly determine which support needs are needed for which disability. I need to be treated holistically as a person with support needs, not left squabbling over which need is caused by which disability. If we only cared about the impairment and not the diagnosis that might actually work but that’s not how the NDIS actually functions. I have obvious impairments but unless I can prove I fully treated every possible cause of those impairments then I only get funding for the accepted cause even though that support need is caused by both the accepted disability and the disability that hasn’t been accepted. This is the news to slash funding even when that support need might be exactly the same if I only had the one accepted disability, because NDIS argues that the other disability is also contributing but they weren’t fund supports for that disability so even if I need X due to my thunder disability I still can’t get it adequately funded. It’s a really ridiculous way of approaching disability because most of the disabled people I know have more than one disability and the complex interplay of those disabilities is unique to different people. You can’t separate out something that’s mixed into who I am as a person. You shouldn’t be allowed to say yes I can see that you can’t do these life sustaining activities but we’re going to support you because you haven’t proved which disability causes the difficulty for you.
“limit unscheduled plan reassessments”
My first NDIS planning meeting was traumatizing and caused a substantial loss of function from which I have never recovered. It is now years later and I’m terrified about what is going to happen when they stop rolling over my plan (even though the plan is completely inadequate for my needs) because I’m rightfully afraid that the next plan meeting might cause me to lose even more function and I don’t know how I will survive that. Having an unscheduled plan reassessment is a risk to my life both in the potential harm to me directly and because without time to prepare and access to the support people I would need I won’t be able to advocate for myself and I risk losing the small amount of funding that I rely on to survive. As a disabled person I live in fear of my ability to stay alive being taken from me by NDIS at any moment.
“expand the National Disability Insurance Agency’s powers to identify, investigate and respond to fraud and non-compliance and to ensure the integrity of the NDIS”
This should absolutely not be targeting individual disabled people and causing us to live in fear like robodebt did to us on Centrelink. Is completely unethical and unjustifiable and if this goes through our government will be responsible for a lot of deaths. NDIS has less fraud happening than most government departments and of the fraud that is happening it’s primarily by providers who are ripping off participants or using their funds inappropriately. Just adequately funding people’s plans will probably cost the NDIS less money than wasting a lot of time and effort trying to demonise disabled people. Many of us with disabilities have cognitive difficulties that can make it challenging to navigate in the is at all. We shouldn’t
Submission 1969
have to have a degree in India yes to feel safe using our plan for the things that we need. Often the rules unclear or constantly changing or dependent on who you ask. Other rules make no logical sense so they may not occur to people, such as when people are penalized for using a cheaper option that’s available to everyone instead of a more expensive disability specific item that does the exact same thing and meets their disability related needs. It’s absolutely ridiculous to suggest that for example somebody must use a $10,000 dedicated AAC device (that they might wait years to get funding for) instead of funding an iPad and AAC app just because technically an iPad could also be used for something else.