http://www.sciencealert.com.au/opinions/20080805-17290.html

 

The importance of disability support workers

Thursday, 08 May 2008

By Peter Gibilisco and Debbie Mackenzie

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.

I attended a study tour to Hawaii with Peter early this year. I learnt so much from this experience and I have also attained many valuable attributes from the experience. It gave me the opportunity to work in Hawaii, and allowed me to gain the organisational skills to get him there and help him pursue his dreams. The trip took an entire year to plan, as there were so many obstacles to work through, but when I saw Peter's determination to get there and really enjoying it, this became a vehicle for change that drove me.

Attending conferences and forums with Peter empowered me; I wanted to learn so much more about the disability sector. I was a successful recipient of a Department of Human Services Scholarship to further my studies in disability work. I am a second year student and with the assistance of Peter’s mentoring skills I expect to complete this and further my career within the disability sector.

In the next section, the paper will discuss the opinions of two highly intelligent people, from the USA, with severe disabilities and looks at the issue of how support workers are undervalued by many in society.

Related pitfalls in an American context

Dr Don Parsons is an outstanding independent scholar and author who was diagnosed with Friedreich’s Ataxia in 1971, and despite this graduated with a PhD in 1985, from the University of California in Los Angeles.

From his sufferance, and his knowledge of the progression of Friedreich’s Ataxia, he is clearly entitled to the respect he has earned for his scholarly and pragmatic views about the political economy of support workers.

Dr Parsons practically and scholastically believes that the ability of a person to effectively communicate and interact with their support worker is of the utmost importance. The disability system of support is focused on the wage relationship so a support worker should, in theory, provide the minimum of personal care and maintenance. All else is, he believes, due to the relationship that the disabled person can develop with his or her support worker.

There are also certain constraints, usually in terms of time, that appear to be inherent in the system. For example, if a person in need of support wants to attend some conferences they may be unable to do so because he or she is unable to vary the established hours of work by the support worker to a sufficient degree.

Now we acknowledge the thoughts of Professor Yvonne Singer concerning support workers. She has suffered with Cerebral Palsy since birth, leaving her severely physically disabled. Despite this she is currently an online professor at two universities in the US.

Professor Singer pragmatically justifies the reasons for a shortage of support workers in America. She believes one of these is that the actions of a support worker are not given any value in society. Many in society, therefore, do not value the disabled and equally do not value actions which help the disabled achieve.

This is only further exacerbated by poor training methods, low salary and no benefits. Singer also commented on the poor work ethic of support workers within the disability industry, due in many ways to budgetary cuts and the flow on effects of poor administration.

Australia benchmarks a sizeable portion of its disability policy from the US, whether it pragmatically works or not. Now in this paper we would like to leave you with something to think about. The question remains: are disability support workers as undervalued in Australia as their colleagues are in the US?

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.

Peter Gibilisco is a person who suffers from a severe physical disability known as Friedreich’s Ataxia. Peter has recently been awarded his PhD at the University of Melbourne. His thesis The political economy of disablement: a sociological analysis is available here.

Debbie Mackenzie is a Support Worker at Villa Maria. She is also a second year student doing an Advanced Diploma in Disability Work for which she has received a Department of Human Services Scholarship.


An opinion provided by OnlineOpinion.com.au - Australia's e-journal of social and political debate.

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.

2) Frataxin delivery research project:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.

The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.

 

 

Go to top