In light of the implementation of a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, I wish to shed light on the issues faced by individuals in shared supported accommodation facilities. In particular, it is important to note the standardising of support which, over time, ultimately leads to dangerous outcomes for residents. My experience in living in a shared home for the past eight years is testament to this, and I have written about it extensively in my latest book. The following are relevant excerpts from my book, rewritten under the context under the Royal Commission.
In my book 6 & 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation, I have so eloquently expressed the need for 4 key elements in the disability sector: passion, empathy, altruism, and pragmatism. This is very clearly on display by Senator Jordon Steele-John in his speech linked below. I highly encourage everyone to take some time to watch this emotional, awe-inspiring speech.
Senator Jordon Steele-John also adds the following to his video:
I gave this speech last year in dedication to those members of my community who lost their lives due to violence, abuse and neglect.
Their voices remind us why we are fighting for justice. In their names we go forward.
It is such a joy for me to be asked to be the guest editor for Design for All, and I have invited a handful of incredible people to share their perspectives. First, my good friend Steffan Irugalbandara brings to the fore his beliefs concerning failure and the positive steps that may become issues from it.
Currently, I have many close friends who have migrated from Sri Lanka. This brings me to an article that I coauthored where we talk about my friendships, Sri Lanka’s devastating effects upon that country from the civil war and the tsunami which still has a profound effect upon the friends who have encouraged me in this article. That being said by way of introduction, we then look more broadly at Sri Lanka and people with severe disabilities.
Next is a book review from a dear and close friend of mine, Bruce Wearne. Bruce was there throughout every stage of this book and whenever I was in a situation where I was in need of help he was always there, a great friend. Bruce also follows with a brief writing on the social aspects of Friedreich’s Ataxia.
Next my good friends from the Friedreich Ataxia Clinic share their expertise in their respective fields pertaining to the care of Friedreich’s Ataxia. Professor Adam Vogel writes on the complexities of Friedreich’s Ataxia and speech therapy. Associate Professor Louise Corben highlights the strains on mobility that Friedreich’s Ataxia patients endure, and how they can be overcome with suitable, individualised disability equipment. Finally Professor Martin Delatycki gives background on Friedreich’s Ataxia for anyone who wishes to learn about the disability.
And finally, is my book’s abstract which basically runs along the lines of the dangers of organized care becoming careless.
Read it here: Design for All
This 6 ½ years (July 2011 – February 2018) in shared supported accommodation, has had a significant impact on the deterioration of my disability. This attains to using the phrase ‘on a dunghill’ as a description of my life in a shared supported facility. This term of expression gives readers an idea of the ugly reality; of the helplessness, immobility, failure to speak and see; and of course the power of irritation towards the delivery of life circumstances pertaining to the disability sector. This bureaucratic mess is subsequent to a lack of true empathy, which may conflict with any budget bottom line, thus enforcing the creation of social dilemmas which then draws attention away from the original problem. This is something that can also be performed by non-government authorities, as is seen in my own circumstance.
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”
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”
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.