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Something to Inspire You

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.

A SIL-ly Situation

About a year ago, I was granted access to the National Disability Insurance Scheme (NDIS).  The plan I had worked on with several dedicated individuals aimed to be specifically tailored to my particular needs, and for the first time in a long time, I was finally able to experience and feel that I had some choice and control in my life. My NDIS plan covered a lot of areas that my Individual Support Package (ISP) did not, and made provision for assistive technology, transport, home modifications, with an envisaged array of support in other matters as well. In particular, the NDIS has given me greater choice and control through allowing me to be the primary manager of my funds. This way, I get to decide which support workers I hire to take on important roles such as academic support, social assistance and other flexible arrangements.

Another burden on my communication

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.

A ONE SIZE FITS ALL POLICY DOESN’T FIT ANYONE

In seeking to treat all people with the same level of care and compassion, is it right to expect an equal outcome from all? 

IS IT POSSIBLE TO GIVE PEOPLE WITH FRIEDREICH’S ATAXIA RESPECT?

My personal style of communication is inherently linked with the progressive nature of Friedreich’s Ataxia. That is to say, my style of communication is unique to me, as my experience of Friedreich’s Ataxia is unique to me. Some of the factors that affect my communication are dysarthria, nystagmus, severe vision impairment, hearing loss, severe loss of mobility, and other physical abnormalities. These prove to be intensely problematic in terms of my communication, and I have had to work around these factors when I try to keep up my conversations with people. In doing so, I have had to deal with the disappointments of various debilitating stereotypes, stigma, and disutilities which in fact have no basis in reality.

Another open letter to the NDIS

I am writing an open letter to the NDIS once more in the hopes that my current situation is alleviated. 

Another possible submission to the Royal Commission

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)