This article was a copy of my original appeal to the NDIS
I look back on the last nine years and come to a sad conclusion. For some considerable time, I have been losing control of my movements. But from July 2011 there has occurred a progressive loss of control that is potentially more fundamental than the biological loss of muscular power. It has not been physiological so much as social and personal. What am I referring to? July 2011, nine years ago, was when I move into a group-home for people with high support needs.
The move came about after being encouraged by various people to enter this group home. This happened because the Department of Human Services, as it was then known, could not allocate an extra 3 hours per day that were necessary for me to work safely and productively during the day in my own residence.
At no stage was the kind of loss of control that I have subsequently experienced – in a personal and social sense – brought to my attention by those who were encouraging me to make this decision, not least those in charge of the facility in which I have subsequently found myself. The “movers and the shakers” in disability care, those who are stakeholders in the disability care industry, seek to find a solution that is cheap and safe, rather than one in which a flexible supporting regime can provide the resident with support that maintains the good things that have previously been a part of a life already constrained.
For example, this can be summed up by the following:
ACE DISABILITY SERVICES – We are here to give independent and fulfilling lives to people with physical, intellectual and multiple disabilities.
Lovely slogan isn’t it? But then reflect upon the efficiencies that are required in shared supported accommodation like my own. And now look carefully at that phrase: people with physical, intellectual and multiple disabilities. I am not here criticizing the ethical intention; I am trying to draw attention to the inner organizational chaos that will result for workers and residents if a facility conflates physical and intellectual disabilities. And who can tell how care for those with “multiple disabilities” can emerge in the midst of such organizational blurring?
There are many residents, perhaps an overwhelming majority of up to 80%, in supported accommodation with some form of intellectual disability. Therefore it can be expected that in shared supported accommodation like the place where I reside, that a policy of taking on such high demand people will simply result in a standardization of disability care by service providers who enlarge their clientele to include non-intellectual disability persons.
And don’t get me wrong! Such people are also my neighbours and deserve proper care. But when people with different kinds of disability are being cared for together in the one facility there is a risk that there will be a standardization in the deployment of staff and resources to residents. I can understand why this will be so in organisational and industrial terms. But I am suggesting that the authentic efficiency of any one facility’s operations must not ignore the different outcomes that are needed for all residents. An abstract “equality” can easily miss individual care needs and outcomes of all residents. How is this relevant for the NATIONAL DISABILITY INSURANCE SCHEME? As part of my answer to this very important question, let me take this one step further by describing my recent problem.
Being 58 years old with Friedreich’s Ataxia, I am left in a position where 90% of the time I am staring into four blank walls. It is a truly frustrating problem. How can anyone truly understand my challenges? I suffer from nystagmus, a condition of involuntary eye movement that results in reduced or limited vision. My eyes are perfectly normal and they are deep blue, so people will never think that I am blind. But they continually shake, creating extremely blurred vision. These frustrations when combined with other grievances outline a systematic failure called Friederichs’s Ataxia. Of an evening I am in need of active personal night for my eyecare and personal support needs, systemic breakdowns such as, the incapability of some support workers to understand my slurred speech has a negative affect for my wellbeing. Apparently, due to some cost benefit assessment neither Yooralla nor the NDIS can provide for these needed supports. Besides blindness I have severe dysarthria, a motor speech disorder, which destroys my efforts at communication. My overall mobility has progressed since I was a baby overcoming an early childhood tendency that meant I would crawl on my backside.
These are the “disabilities” that have been delivered to me, but I have always tried my best, and maybe once in every fifty attempts at whatever it was I have been trying to do, I would “hit the nail on the head”. All the pleasure would be mine. But reaching the age of 25 I have had to accept that hammering nails was not going to be part of my life!.
My need to live independently is evident from all of my life’s pursuits. Presently, up until a week ago I was a PhD supervisor at Melbourne University, and was hoping such a role would have its domino effect. But due to the chaotic stimulus provided by Friedreich’s Ataxia the opportunity that could have provided me with a new hammer has now left uneven pathways through life’s coarse. However, Independence is something I need and something I have struggled to express for 35 years. Am I not entitled to expect and hope that there will be something in return for all of this effort?
Firstly, I would like to thank my brilliant ghost writer and friend Bruce Wearne. Secondly, my beautiful and talented academic support worker Daniella and also I would like to thank my brilliant and lovely academic support worker Amanda.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
You can also order directly from me.