Wasting expertise and wasting lives

My disability, Friedreich’s Ataxia, has over time severely changed my ability to participate in “my life”.

The disease currently leaves me with indecipherable slurred speech, severe mobility restrictions (wheelchair bound since age 23 and suffering from profoundly unco-ordinated movements - an example of this is a very slow typing speed of about three words a minute) and a range of deformities, only one of which is classified as severely disabling.

For example, a scoliosis (twisted spine or “hunch back”) was operated on in 1986 to stop the speed of deterioration, but this in turn created new problems: my spine from the top of my neck to the bottom of my tail bone is supported by stainless steel rods, making it inflexible - it can’t bend. But it was either have the operation or die because my spine was bending rapidly and would have caused my heart to get squashed.

I also have a cardio-myopathy (a profoundly deformed heart) and nystagmus (weakness in the muscles behind the eyes causing them too constantly shake), and many other medical deformities directly related to Friedreich’s Ataxia.

In spite of this, for most of my adult life, I have lived independently in Dandenong. I am now 45. And during this time I believe I have acted as role model for many people with severe physical disabilities. I have been studying at a post-secondary level since the age of 23. I completed an Associate Diploma in Business Studies (Accounting) at the age of 27. After this I attended Monash University for ten years and was awarded a Bachelor of Arts, a Bachelor of Business (Accounting), and a Master of Arts. My last academic association was with the University of Melbourne, where I completed my PhD in December 2005.

By doing and achieving all this, I feel I am certainly fulfilling my obligation to contribute to society.

During this time I have always tried to play a good hand with the cards life has dealt me. The disease has significantly progressed since I first started living on my own in 1989, especially during the last five years when I was studying for my PhD.

But now that I have my PhD I have harder yards to accomplish: that is to participate in the disability sector as a person with a PhD. I have much personal experience of public policy as it pertains to those with severe physical disabilities that could assist in shaping future directions of public policy. However my attempts to participate have been restrained by the Department of Human Services (DHS).

The DHS have found yet again, in their wisdom, to refuse me the necessary personal care hours I need to capitalise on my PhD within the disability sector and also to help slow down my medical deterioration. This further throws into question the stated claims of the State Disability Plan to provide for human rights, dignity and self-determination, when individuals are denied access to necessary personal care that would improve their quality of life.

In previous years, I was granted a sufficient number of hours of personal care to keep my head above water, even allowing for deterioration in my condition. But at that time all I required to fulfill my initial needs was to maintain the ability to be an exceptional student (mostly working on the computer for eight hours a day).

Now I have finished my degree, however, and this along with my physical deterioration has dramatically changed my personal care needs.

For example, this was Support and Choices response to what I considered a reasonable request for additional personal care hours:

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.

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.