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Does the not-for-profit sector truly aim to assist people with disabilities?

By Peter Gibilisco - posted Friday, 13 March 2015


I'm where I am now despite having had an initial deep concern about moving into a shared support accommodation unit. After all, I Had lived on my own for 21 years, and had endured increased difficulties of those last two years of supporting myself as direct employer of my own support team.

This is to say that I have moved from a situation where I was respected for being totally independent, responsible for my own situation and living on my own, to where I am now,  in a situation where my concern for myself and managing my own needs is scrambled together with the lives of others in ways I, quite frankly, detest.

This is another way of saying that my experience here gives me sufficient evidence to say that my service provider’s placements lack true understanding. This is a shared supported accommodation unit of people with disabilities. Let me give an example; let me recapture what happened a short time back when the management took on a new client here as part of DHS demands to make disability support more efficient. I guess they thought they would gain favour of DHS from doing so.

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The service manager here felt compelled to take on a client with severe Down-Syndrome. Our supported accommodation has residents with physical disabilities.

My sociology training alerted me to the presuppositions of this DHS managerial attempt to increase efficiency. Social Role Valorisation theory is a theory that helps us explain managerial policy that effectively devalues, and will further disempower, the lives of people with physical disabilities by a policy that regulates different kinds of support by reference to a generic "disabled" category.

I have come to see myself as a social justice advocate and having received notification of these plans found a way to intervene, managing to prevent its implementation.  It would not just have been a new person amongst us, but a new régime for all. The introduction of this client would seriously impede the support of the clients, the current residents, many of whom are in a similar position to me, with impaired physical functioning. It would also mean another severe restriction upon the staff. There are four working in the morning, four working in the afternoon, and one who is "sleepover", doing what needs to be done during the night. This already creates many demands upon staff and it is the service provider’s policy that two staff members must be present during the care process of any person with high support needs. There are only four staff at present for seven clients and four of these have high support needs i.e., they are similar to me.

Such policy changes have been pursued by management who thereby demonstrate that they have little knowledge of the support required to meet dayto-day needs, quite apart from other flexible support needs that arise from individual clients. The manager has since vigorously pursued the entry of two more clients, but this time they are those with advanced Multiple Sclerosis, and also in a high support category. My question is this: how can four support workers adequately provide care within the service provider’s policies for 9 clients/residents and 6 with high support needs? Are we to simply assume that our support workers are super-human? 

I also have another question arising from this matter. It has to do with the service provider winning the contract from DHS. Did the contract from DHS for these two most recent residents imply or state that the service providers must ensure that all of its unit's clients, are supported properly according to the individual care requirements and not just restrict itself to the care for the two new individuals,? In other words, does the contract include a recognition of management's responsibility for the entire unit, to ensure that overall care is not compromised?

As you can imagine: fighting for fairness is not without its emotional setbacks and, at times in my case this can also have physiological setbacks. Let me give you an example from current events, which I will now explain.

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Today I live in shared supported accommodation for people with disabilities, which over the last three years has endeavoured to change the daily plans of my existence to suit the day to day efficiency procedures required of the accommodation facility.

To get down to it, my progressive disability - Friedreich’s Ataxia - has left me today close to totally blind and with severely slurred speech. That is a condition that is un-understandable, beyond the comprehension of most. Along with severe mobility restrictions, that puts my day-to-day existence in far greater turmoil.

As you can understand from this, the way my needs are supported by staff, along with the friendships gained from our interaction, is such a valuable experience for me. I simply cannot tolerate my support workers becoming disheartened with the fact that their work load has increased so dramatically. And with my progressive problem, as I have stated it above, I cannot now train new support workers to do a similar job to the one's that are so sensitively caring for me. I am 53 years old, with a progressive disability. To me it is self-evident. I trust you get my point here.

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Special thanks to Bruce Wearne and Amanda Gunawardena for their needed help.



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About the Author

Peter Gibilisco was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the disability's progression. However, he still performs research with the university, as an honorary fellow. Please read about his new book The Politics of Disability.

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