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”
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.”
Below is a definition of Nystagmus as derived from Wikipedia:
Nystagmus is a condition of involuntary (or voluntary, in rare cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision. Due to the involuntary movement of the eye, it has been called “dancing eyes”.
Continue reading “The relationship between Nystagmus and my individualistic style of Friedreich’s Ataxia”
My time 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. The loss of my control and dignity manifests as motivation to change the delivery of care in the disability sector. Continue reading “Job on a Dunghill”
Here is the poster my team and I have created for 6 and a 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation. I believe the book contributes immensely to the current debate surrounding the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Continue reading “Poster: 6 and a 1/2 Years on a Dunghill”
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.