A primary “goal” of the State Disability Plan is to provide support, that is, to encourage people with disabilities to live their own lifestyle. This is referred to in the State Disability Plan, as the pursuit of individual lifestyles: "to enable people with a disability, to pursue their own individual lifestyles by encouraging others to respect, promote and safeguard their rights, by strengthening the disability support system".
In the report such a pursuit is linked to the worthy aspirations of the Person Centred Approach (PCA). However, the goals of such an approach are shown to be somewhat idealistic when support services work with severe disablement, which covers a large portion of those needing support. In reality, the implementation of support for severe disablement is limited by political processes that require a standardised response.
People with severe disabilities want and are competent to perform the majority of human activities, with the help of a skilled and empathetic support worker. The goals of Victoria’s State Disability Plan are to ensure such needs are adequately met; at least that is what it implies.
These rhetorical goals are to provide a person with a disability the required essentials that mean people with disabilities have choice. I can pragmatically acknowledge in Peter Gibilisco’s case, human assistance is the most flexible and capable method of support. For example, there are infinite amounts of human problems that arise, and by ensuring empathetic and pragmatic support, that is, to assist in implementing the measures of the State Disability Plan. That will mean pathways are opened to help people with severe disabilities reach their full potential whether in work, education and relationships.
My name is Debbie Mackenzie and I am the major support worker for Peter Gibilisco. In the past 2½ years my support role has increased, becoming more wide-ranging and flexible in the duties of personal care, through to challenges that have helped improve the quality of his life. The following explains how this has worked. I want to emphasise the importance of a person-centred approach in all practical aspects of support care.
When I first came into disability support I had no idea of what to expect from the practical side of disability. There were many differences from what I was taught in theory, and since I come from the aged care sector I knew I would need to change my way of thinking in order to serve in the arena of disablement.
Initially I did not understand how working within the disability sector could be so different, but I soon realised the differences were huge. They were huge in these ways: of course there is an age factor; but also there is a much more intense emotional factor. I could see there was so much more living to be done. For example, there needed to be more community inclusion and opening up of choices for living. This is known to have a positive effect, at least in Peter’s case, and should greatly improve the lives of many directly effected by severe disability.
I attended Peter’s PhD graduation at the University of Melbourne as his support worker. What a privilege that was, just to attend, and it was so inspiring to have the knowledge of the many obstacles Peter has overcome and while never forgetting the big picture. So yes, this is the first image of what I could see of his “Dare to Dream” approach to life.
Then gradual changes started to take place in Peter’s life, such as the much required and fought for increase in the needed hours of human support services, through more flexible hours and a pragmatic person-centred approach. This was how my life started to evolve more around the study and the pragmatic diligence of disability work, and I loved it!
Peter was losing his ability to project his opinion at conferences and forums - his voice was weakening and his speech impaired and slurred. Therefore, Peter sought advice from those at ComTec, who helped him out significantly by installing programs in his lap-top computer that could adequately project a suitable voice. The ability to communicate more freely at such events has considerably furthered Peter’s self esteem.
The boost Peter gained from technology also allowed him the ability to further his professional contribution in ways that a knowledgeable and empathetic support worker can readily assist. I learnt very quickly the required computer skills that would assist Peter’s quality of life. However, no training can explain where the boundaries are: these I worked on myself to enable me to work in a professional, yet empathetic, manner. An example of this is given in a quote by Ed Roberts when talking about his support worker Jonathan Gold in the 1994 book To Live with Grace and Dignity, edited by Lydia Gans:
While Ed easily says that his attendants often become his friends. Jonathan is more reticent and will plunge into a philosophic discussion of what friendship means. Does it mean wanting to do the same things? Ed likes to go to the A’s games while Jonathan wouldn’t dream of spending his time watching baseball. After mulling it over for a while, Jonathan agrees that they doubtless are friends since their basic attitudes towards life “probably are in harmony”. More thought leads him to admit that there is a love between them which is a “spiritual thing” and for him the work itself is, ultimately, the expression of that love.
We would like to extend a special thanks to Peter’s father and stepmother for their graciously given and much needed assistance to get to Hawaii, and sustain a fantastic trip. This paper was developed from a paper presented at the 2008 Disability Professionals Victoria Conference.
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