My concern is serious. It is about Yooralla’s dismissal of my need for individualised care. I am a 56-year-old male with a double degree, a Master of Arts and a PhD from Melbourne University. So why am I still treated as, for lack of a better term, an idiot? This is especially evident from the way Yooralla treats me. It does not take me and the form of care that I need into consideration. Continue reading “My need for invidualised support”
Good news! I am finally able to transition into the NDIS! With a plan that is specifically tailored to my needs, I will finally be able to experience some choice and control in my life.
It has been a long and strenuous journey to reach this outcome, and I have only been honest in all accounts; and in the midst of still attempting to defy the one size fits all policy approach to individual disabilities that prevails in this shared support accommodation facility. Standardising in this field will create the improper pursuit of human rights and result in chaos, something I have experienced a lot of in my daily life here.
My NDIS plan covers a lot of areas that my ISP did not, such as assistive technology, transport, home modifications, and other core supports. I would like to especially thank Daniel Rose from DHHS, for highlighting my situation and needs to relevant parties and finding new avenues to help me, by drawing my attention to alternate living arrangements. This is a tremendous weight off my chest, as I will now be able to focus on the things that truly matter to me.
This was all done with the help of my brilliant and lovely academic support worker, Christina Irugalbandara.
Before I begin, I want to point out that my support provider was witness to a document I signed, regarding DHHS and my personal information. Any information about me should be not be disclosed to any parties, except on my approval.
Here is a letter I received in response to a blog post I had made on 8 April, which was posed as an open letter to the NDIS. In the blog post, I talked about my urgent need to get out of my current living situation. Continue reading “I Respond to the Minister of Social Services”
The below is written to give an acknowledgement to professor Martin Delatycki and doctor Louis Corben for their expertise in the medical conclusions of Friedreich Ataxia.
“Dr Peter Gibilisco was diagnosed with Friedreich ataxia at the age of 14 years. He is now 55 years old. Friedreich ataxia is a rare, progressive neurological condition. The main symptoms of the condition include initial unsteadiness in walking, fatigue, sleep disturbance, incoordination of the upper limbs, reduced balance, reduced hearing, difficulty speaking and significant heart involvement. The affected person eventually loses their capacity to walk and becomes dependent on a wheelchair for mobility. In addition they increasingly require assistance with most personal care tasks as the disease progresses. To date there is no known cure for this life-shortening, devastatingly progressive and debilitating condition. Continue reading “Did I Deserve 7 Years of This Imprisonment?”
I don’t have the capabilities to type on my own, without the assistance of my academic support worker; but, over my 56 years, I have developed a drive to achieve the improbable. Continue reading “3 Hours…”
I want to know how come I haven’t been contacted by a NDIS planner yet. I am becoming very blind, and you don’t know or understand how difficult it is for me, and how much worse it is becoming.
Am I supposed to just sit here and do nothing but accept the very minimal time I have been allocated the academic supports in order to voice my thoughts? Am I supposed to just sit here and do nothing but accept the inadequate care that I’m given by my disability support provider?
This place is phenomenally having negative side effects on my physiology; it is worsening everyday. For instance, today my vision is so blurred, and thus I’m under extreme pressure to type, what would be considered the most basic of emails. Please, my intelligence needs synergistic human help, that can only be provided through 1:1 support; this is not what is given in shared supported accommodation.
To anyone with a heart, with some compassion, patience and empathy: I really need out. The lifestyle that I am forced to live is very inappropriate under medical and social practices.
Last week, on March 29, I was a keynote speaker at the Monash Human Library which was held in the Peninsular campus. This was conducted to an audience of about 100 OTs – both students and professionals. My keynote speech explored the individualistic pursuits of Friedreich’s Ataxia which can be summarised as follows: Continue reading “Monash Human Library and New Book”