6 and ½ years on a dung-hill; life in Specialist Disability Accommodation
In this book I propose to include edited versions of posts I have made to On Line Opinion (OLO) (www.onlineopinion.com.au), John Menadue, ProBono, The Conversation, DesignForAll, and my personal blog.
My aim in this book is to affirm vital principles that need to be better understood and implemented if the National Disability Insurance Scheme (NDIS) is going to be of benefit and fulfil its mandate; so that care doesn’t become careless. Continue reading “My new book”
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…”
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”