Submission 1516

Submission 1516

recommendations into violence, abuse, neglect and exploitation of people with a disability“ what she didn’t say was in the final report of the Royal Commission Inquiry into Disability Discrimination there is two hundred and twenty two recommendations made, including a Disability Rights Act. Our Government agreed to consider all recommendations. I do know that areas like law, policy, housing, employment and education are all in need of revision and change according to the Royal Commissions recommendations. What I don’t know is whether the Minister Mark Butler for the NDIS itself is held accountable or will be held accountable for his department’s abuse of power, extploitation and neglect of people with a disability. I know that at the end of the day it is not the intent of the institution itself but the individuals who represent it, by my experience though it is those of integrity, morals and ethics that have been left with no deision making power and those with decision making power that appear to be deficient greatly in a moral compass leaving me to question their integrity and ethics. In my opinion this Bill is definitive proof of the moral deficit that exists. The Bill in addition to the current legislation, policy, procedure and guidelines is the embodiment of retarded for those with a disability, it will delay and hold back those who are in need and it is the participants who suffer at the hands of others either in power or representative of the powers that be.

We as a community have not been given enough time to properly understand the repercussions of these amendments, these amendments have not been explained clearly and concisely nor in an easy read version for those of us who aren’t politically or legally educated. I understand the phrase “all available treatments before being considered eligible” though and am disgusted that it would be written into law! It could be justified hypothetically speaking that there is treatment available at the Boston Children’s Hospital in America and you haven’t tried that yet, so you’re not eligible. It may sound ridiculous but this is what the amendment to law could be legitimately interpreted as. There is nothing about reasonable access to or affordability. In many cases here in Australia there isn’t reasonable access to or affordability. Not everything that is required is covered by medicare and bulk billing and even then to see a specialist can take months or even years for those of us on the D.S.P in a rural setting who can’t afford to travel to the cities to get appropriate treatment, diagnosis or care is a very real struggle. I may only be recognised by the NDIS as having a Spinal Cord Injury and PTSD however I have numerous medical conditions that rule me out as a candidate for all current treatments that are available and accessible to me here in Australia for example I have refractory (uncontrolled or hard to manage) epilepsy, steroid hypersensitivity (triggers seizures) hypnotherapy (seizures) ligh therapy (seizures) opioid allergy, ketamine program (unsuitable candidate), medications (interact with seizure medication), the list goes on and on and on and I keep up to date with new and trial procedures because I don’t want to live the way I do! I may have medically induced PTSD and it took years, long before the NDIS was even a concept to be able to control myself enough to be medically compliant and I have Doctors, Psychologists and Psychiatrists who will attest to that. Yes it is traumatic and distressing for me to go to a G.P. but if I think I sincerely and legitimately do need to, than I do with support because someone needs to remember what the Dr has said as my brain has shut down in order to protect itself.

Submission 1516

The word permanence I can’t help be amused by because if I didn’t have a giggle or a joke about it I would cry or most likely have a mental breakdown of some sort. It would be awesome to just freeze in time my conditions, conditions that are degenerative and fluctuating, you never know what you’re going to get.

The role that the NDIS plays in my life is to slow down the impact and work around my conditions for a greater quality of life. Once upon a time I could drive myself and my children around but then surgery, rehabilitation and a steroid injection went horribly wrong, It was no longer safe nor was I capable to be behind the wheel, it’s assumed that the seizures stop me from driving which yes they do but they only came along in 2019 after a transient ischaemic attack or mini stroke, upon which an aneurysm was found and repaired but the seizures never went away and my says they won’t go away they are permanent, after everything we’ve tried and yet the NDIS currently won’t recognise an internationally renowned Specialist Neurologist and Epileptologist, the face of Epilepsy Australia one of the top in his field for a disability update of seizures and their “permanence” yet an administrator, lawyer or politician can determine it.

The arrogance of someone sitting behind a desk who has not been through what I have been through or seen what those who love me have seen and is not qualified or experienced in any way shape or form comparable to the man who has been treating me for six years now. Seriously, who came up with that idea? Which legal genius (healthy dose of sarcasm) thought it would be a good idea to write it into a Legislative Act that already fails the participants who produce undisputable medical facts from medical professionals for some administrative personnel to reject only for the NDIA to spend thousands if not ultimately millions for it to go before the A.R.T. because the participants have to fight for what they need and the NDIA aren’t using Legal Aid they’re finding and paying the top Administrative Lawyers and their teams. I wonder how much money would be saved if those of us with disabilities were treated like human beings, rather than a number in a system that does or does not meet a criteria determined by a medically unqualified administrator who conducts themselves disingenuously and in an insouciant manner.

If I didn’t have access to the capacity building support that I have been provided with to date it is guaranteed that I never would have been able to spend time with my grandchildren or witnessed with my own two eyes a game of football played by my godson, daughter, son and daughter in-law. I have to pick between them on a relatively consistent basis, admittedly it has taken years to reach this point and I can’t always stay for a full game but I have and now it’s going to be taken from me should this Bill pass.

Under the current criteria and guidelines I am now before the A.R.T. requesting to have annual funding rather than quarterly, having run out in the first two quarters due to exigent circumstances. Then fearing using support hours as I believe it would interfere with my social and access to community. Requesting overnight support be written into my plan. Now needing to be written in so plan managers will pay the invoices fearing the repercussions or rejection of the invoices if it is paid. A fall of any sort let alone one caused by a seizure can be completely debilitating even if only temporarily because it exacerbates and over extenuates my Spinal Cord Injury and yet the NDIS wants it in a neat tidy little box of “would that be, two or three times a week?” the answer is NO it would be randomly as needed because I don’t know if or when I’m going to take a fall. My fall risk is increased by your rejection of a power assist manual wheelchair and I am

Submission 1516