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Wasting expertise and wasting lives

By Peter Gibilisco - posted Wednesday, 28 February 2007


1:1 support worker for personal care for 23 hours per week, for 26 weeks.
These hours are used to conduct lives bare necessities, such as, getting me in and out of bed, enema procedure, hygiene and cooking preparation - I only eat twice a day breakfast and dinner (refrigerated during the day and microwaved at night).

1:1 support worker assisting with fitness for 1.5 hours per week, for 26 weeks.
These hours are flexible but well below what I require.

However, DHS did not approve the following: three hours of personal care for community access (to attend disability conferences, forums and meetings, to follow up with my PhD studies and to offer myself as an outstanding individual within the disability sector; two and a half hours of personal care for assistance with a hydrotherapy session once a month - besides the medical benefits, it feels fantastic to stand of your own accord (even if it’s only in a hydrotherapy pool); one hour of massage therapy a month - my muscles are tight from the disease and this will be exacerbated with the extra fitness training.

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In terms of the emphasis on balancing rights and responsibilities, I contend that I fulfill my obligations to society, and as such the denial of my access to needed levels of personal care can not be based on ideas of mutual obligation. Perhaps the DHS must think differently.

This provision of personal care, which has not been responsive to my changing disabilities and life style, again reveals significant problems in attaining the goals of the State Disability Plan in the context of the everyday lives of people with severe physical disabilities.

It is a long way from the stated goal of the State Disability Plan to “focus on supporting people with a disability in flexible ways, based on their individual needs, so that each person can live the lifestyle they want to lead” (State Disability Plan).

In conclusion, despite its rhetoric and references to social inclusion and social rights, the DHS approach to the State Disability Plan is a social policy that identifies the social supports required by those who need them as burdensome to a marketised economy, and to the ultimate goals of delivering budgetary surpluses.

Its rationale to reduce social spending does not result in the achievement of human rights and social justice, but an increase in individual human suffering and social exclusion.

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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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