In this piece I want to give a presentation on how I see my own contribution being made from within the confines of my own situation. I am assuming that I am just like everyone else in that I have a ‘situation’ and it is primarily up to me to deal with it. But then there are aspects of my ‘situation’ that most people don’t have to deal with.
Here I am then in supported accommodation for the disabled.
My first point in that support staff cannot offer me the support that is needed for me to adequately confront my situation because they are not a one-on-one support system. They may help me live life in a way but their help does not sufficiently address what I can’t avoid; my situation. So what am I, as an independent person, who still lives with the hope of making a contribution as I daily struggle with Friedreich’s Ataxia (FA)? The realisation that I have the intellectual ability to do so is lost on many, even if this ignorance is based on negative stereotypes that have no basis in reality.
Success for me is, like many other people, an ongoing dream, but I tell myself that I must be realistic. I have had to learn the discipline, the painful discipline, of living within the confining frustrations of FA and many of its associated problems, including the social ones.
Please hear me out. I simply want to live my life, as much as I can, on my own terms; that is, I’m eager to play the best hand with the cards I’ve been been dealt. This is my first priority. If it’s a cry it is not a cry for sympathy but for empathy. Please, please think about that.
Now here’s the “thing”. Within disability support it is individual integrity that needs to be respected by all. An individual’s integrity cannot be avoided and if efforts are made to standardise care then the suspicion must arise that such support is provided in order to meet objectives of the service provider, and therefore present itself as self-interested. Sad to say that that is how the modus operandi of service-providers like Yooralla are coming across, not just to me but to some of the workers who also have to work within such constraints.
When I initially entered this group home, I was as upfront as I could be in outlining the deterioration of my body under this form of Friedreich’s Ataxia. That statement of fact hasn’t gone away for me but it doesn’t seem to have hit home to the service provider. Today, I am now a situation, my ‘situation’, (please refer back to first paragraph) where FA has progressed I am expected to live, function, under the inapropriate protocols and inadequate, unpersonalised care in a context where, because my self-interest seems to be ignored, the management policies that govern day to day life here simply fail to provide disability care that respects and enhances individual integrity.
Let me go one step further. I will now mention my greatest need. In a day-to-day sense I am wanting to assist those charged with caring for me to understand my failing ability to communicate, mainly via voice. Hence the ability to practically engage in conversation is of immeasurable benefit and importance in slowing the progression of FA; that is, with Friedreich’s Ataxia, ‘if you don’t use it you will most certainly lose it’.
And so, I am convinced that “one on one support”, facilitated by self-managed funding, is the most appropriate form of care for me at this advanced stage of my declining capacity. This I believe will be basic to meeting my individual care needs even at a minimal level.
Please follow me carefully here: my support workers in Yooralla’s shared support accommodation do not have enough time nor do they have the understanding of my particular stage in FA progression to assist me properly. This is not to criticise them, since they also have 8 other residents with very different and varied disabilities to care for as well as me. Thus, support workers in Yooralla don’t even have the time to try and satisfy all of my needs, and most of my needs that are related to my “self-definition as a professional” are related to my academic pursuits; this has been concerned with developing a social model of disability care, rather than the mostly antiquated “medical model” (which, if I had any hair left, let alone facility with my hands, would now already have seen me pulling my last remaining hair out of my scalp!)
Let’s put it logically, with this brief definition: a support worker for a person with high support needs must have the time, patience and empathy to support them individually.
I have noticed – I have been unable not to notice – that time is a major factor with Yooralla’s modus operandi because their form of shared support accommodation restricts care for me in my ‘situation’ because we have four support workers and nine residents residing in this house. One does not need to be expert in rocket science to calculate that such figures make one on one care a complete impossibility. With the current working ratio of support staff to residents, even a good measure of individualised care becomes an impossibility.
OK then: let me spell out how I see my needs: I need at least 2 hours per day for a one on one conversation with a support worker. And the support workers at Yooralla do not have the time nor the ability to (learn how to) understand me. My speech is hard even for me to understand even if I know my own intention.
Many unfortunate past incidents, such as falling over out of my chair could have been prevented with the provision of adequate and personalised care, but it must start with the understanding of my disability. The problem with my falling out of my chair, happened again yesterday. Similar to the previous instance, when I stooped over, I thought that the only way for me to feel relaxed was to pull myself by the sides of the table to make the wheelchair fall; this was to put me in a more relaxed position. I will not point fingers at a specific support worker, but it is a “human resource deployment problem” (as they might put it in the management textbooks) where effectiveness has been overridden by efficiency. Today, I stooped over again in a more painful manner and I was not able to help myself in any way. I was in this position for two and a half hours.
I acknowledge that recently Yooralla has tried to rectify past situations, but their attempts have not made an active and noticeable change as yet, especially when I look at what has transpired yesterday and today with those with whom I am in close consultation about this statement and we have considered together these events.
And so I have tried to write positively and frankly. It seems now that it is of utmost importance that an ongoing solution will require a support worker or workers to spend more time with me, in order to understand me and my disability, so they can know what my needs are and how they are to be met. However, my needs can never really be identified simply with a cost-benefit analysis that might have to be part of managerial oversight. I am conscious that I am putting a serious challenge out here to Yooralla; my service provider, and the employer of my support workers.
Respectfully and urgently submitted.
Thank you to Bruce Wearne for his empathy and understanding in helping me with this piece. And the ‘thank you’s do not end there. Chrissy, my academic support worker in helping me with editing, reading and writing. Also thank you to Peter Cross for his advocacy.