Over the past few years, and especially in the last few months, I have been reflecting upon my experience of shared supported accommodation. Some experiences I have encountered within the service provision has developed a distinctive grey area. My own thinking, trying to get these events in some sort of focus, has mainly been done from my perspective as an individual pragmatist. I live within an environment where, in order to survive, I am dependent on standardised practices.
I wrote and published this article on OnlineOpinion over 11 years ago. It is troubling to me that nothing much has changed over all that time.
I am still trying, even though I’ve got 1/4 of the abilities I had back then in 2008. That means now, I am constantly pushing the boundaries of my remaining abilities to speak against injustices. I want to achieve so much in a personal, social and academic sense and all I ask is to be given the opportunity to do so.
I can still remember some events quite well of my early life when I was seven. For example, let me tell you about trying to ride a bicycle. It took me a while and took me some time before I got to master it. It was no easy feat. Also, at 7 years old I entered a new primary school and there in the playground was a balance beam. This gave me an early lesson in the difficulties I would confront later when Friedreich’s Ataxia took hold. But I’ve always been very determined to live life to its fullest.
It has been eight and a half years since I moved into the shared support accommodation facility where I now reside. For socially conservative reasons, pertaining to cost-benefit analysis, there has been a significant, tangible and intangible failure of choice and control. For the past eight and a half years, continuously undergoing the strains of living in this group home has had a detrimental effect on me — as I have written about in previous works.
Under the current disability support system that I am a part of, my support provider receives a sum of money from the NDIS, known as the ‘SIL’ (Supported Independent Living). They may have been allocated quite a large amount of money, but as I experience it they treat me in a very flippant manner.
In seeking to treat all people with the same level of care and compassion, is it right to expect an equal outcome from all? Continue reading “A ONE SIZE FITS ALL POLICY DOESN’T FIT ANYONE”
I am writing an open letter to the NDIS once more in the hopes that my current situation is alleviated. Continue reading “Another open letter to the NDIS”
NOTE: This is another one of my short articles that, among other things, gives expression to some or other aspect of my condition and the difficulties I face in getting these matters corrected. In previous articles about my physiology my concern is to describe the kind of progressive reduction that comes about under a degenerative muscular condition such as Friedreich’s Ataxia. Here I focus upon a problem with technology and how the problem interacts with my disability. I hope these articles can be helpful to others undergoing similar circumstances and assist carers and family members to devise creative strategies to overcome the persistent frustrations (P.G) Continue reading “Another possible submission to the Royal Commission”
The following is from a study was published in The Journal of Stereotactic and Functional Neurosurgery:
“About 11-15% of patients with Friedreich’s Ataxia experience painful muscle spasms or muscle contractions, but little is known about the underlying processes that cause this complication.” Continue reading “The independence of Friedreich’s Ataxia and its relationship with deteriorating muscle spasms.”
August 7th 2017: Friedreich Ataxia’s News included the following definitions for Scoliosis and Heart disease—
Weakened core and leg muscles can lead to aggressive scoliosis or curvature of the spine in many patients.
Around three-quarters of people with Friedreich’s ataxia will develop some form of heart disease, usually hypertrophic cardiomyopathy which is when the heart muscle becomes thickened.”