AGAINST THE CHANGES TO THE NDIS
30 March 2021
I AM HAPPY FOR THIS LETTER TO BE SUBMITTED FOR PUBLIC TO READ.
I have a diagnosis of degenerative Spinocerebellar ataxia type 1. I see a neurologist once yearly, unless needed, and is supported by my General Practitioner.
I have reported that my symptoms have increased in frequency and severity in the last few months. I have also reported severe headaches, facial spasms and pain in my eyes. Therapists have observed internal tremors and I have also stated that I sometimes get painful spasms in my stomach. As a result of these symptoms, I often feel fatigued and unable to engage in everyday activities.
I don’t not take any medications, only Nurofen Zavance as needed. I use essential oils therapeutically. I am allergic to morphine, codeine and tramadol.
Whenever I mention the name of my disability I ALWAYS get put in the “no you’ve got something else category”, people like the LAC etc. have done this to me. Instead of researching what I go through or reading the materials from my neurologist or reading my blood DNA test which shows my disability - STOP GUESSING PEOPLES DISABILITY Not only will making the NDIS only acceptable via an IAS, you have no idea what stress and worry this will add to a person. I have had massive changes in my circumstances and one of my concern is how these kind of things will be addressed with the new IAS.
Independent Assessments
Submission #319
The discussion of changes has increased my anxiety to the point anything read about the changes makes me sick and puts me in tears. I cannot sleep and the added stress has made me very incoherent when speaking.
Social Workers are not trained medical professionals. More harm done to you than is needed. What these assessors will not see is that my disability does change on a daily basis. Different things happen to me at different times.
With the help of NDIA, I have been able to get help from many services. I am worried that with the IAS this will not be an option for me.