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How neo-liberal ideology affects the lives of people with disabilities

By Peter Gibilisco - posted Wednesday, 17 December 2003


HomeFirst is a program run by the Department of Human Services Victoria. It incorporates the In-Home Accommodation Support program, which provides a range of home and community-based support. That gives people with disabilities the essential goods and equipment to enable them to live independently and not require staffed residential accommodation (nursing home or hospital-style accommodation). It provides for services that will allow many "people with disabilities" to remain living in their own home while increasing or maintaining maximum individual levels of independence. HomeFirst is a program that can help certain people with disabilities move to a more independent style of living arrangement that more equitably provides access to community activities and facilities. The HomeFirst program can provide up to 34 hours per week of care/support.

Linkages is a care/support program also funded through the Department of Human Services. However, this state service program has been given a smaller budget than HomeFirst. That is, linkages clients are believed to not as frequently require care/support assistance. I have been a recipient of care/support services from Linkages for more than six years and presently receive 16 hours of care/support under this program. The progress and severity of my illness has required Linkages to constantly go over budget, where I am concerned. However, even when Linkages staff go that extra distance to help me, it is still not enough.

The progress of my disability (Friedreich’s Ataxia) has left me vulnerable but not inadequate. My vulnerability is due to a lack of assistance with my disability. For example, I now have a lot trouble with getting into and out of bed, toileting and many actions most people take for granted. This has been developing over time; especially over the past few years, when I have concentrated intently on making my mark in academia.

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I was diagnosed with onset of Friedreich’s Ataxia at the age of 14 and I am now 41. Friedreich’s Ataxia is a progressive disease that causes impairment through a failure of timely muscle reaction to messages sent from the brain while also affecting muscular growth, giving rise to severe medical deformities, limitations and problems (I have been confined to a wheelchair since the age of 23).

There is no known cure to this problem; however, there are forms of therapy (mostly Medical) that may provide some easing of the pain and an adequate solution to many of the side-effects and problems. Most of these treatments, including physiotherapy, massage, and speech therapy, can be supplied by a trained carer. Presently, I cannot take up any of these options due to the limited time I may spend with carers/support staff. Is it a failure of medical understanding to acknowledge how the extra support and care allowed by the HomeFirst program, would improve my quality of life?

I applied for the HomeFirst program about a year ago and was told by mail that I was on the urgent list in November 2002. To support my application, I produced what was, in my opinion a prima facie account of my need for additional assistance, with the backing of references from people who are leaders in their respective fields.

I have been studying at a post-secondary level since the age of 25. I completed an Associate Diploma in Business Studies (Accounting) at the age of 27. After this I attended Monash University for 10 years and now I am at the University of Melbourne, due to complete a PhD in the allotted time for a regular student of just over three years. Despite typing at about five words per minute, I get my work done (with consistency and determination, much like the tortoise against the hare). As well, I have been awarded a research scholarship and won the June Opie Fellowship in 2001, and so far have to my credit a number of publications. Therefore, are the economic cost-benefits for me receiving HomeFirst unwarranted?

I have lived on my own in Dandenong, Victoria, for the past 13 years. This has allowed me to develop individual social skills that have dramatically impacted on my life as a person with a disability, allowing me the responsibility of my actions. However, the ability to maintain my life has progressively become harder as I get older, less agile and more susceptible to pain and physical injuries. These are caused by the inadequate factors involved with an independent performance of most of my daily activities. This unwarranted stress and hardship would be alleviated, to a certain degree, by the extra care/support that would be granted to me under the HomeFirst package.

The Australian institue of Health and Welfare reported in 2002:

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The number of people aged between 5 and 64 years with a severe or profound core activity restriction living in households increased from 244100 in 1981 to 644700 in 1998 … Most of the people in households live with family members.

The same report highlights the desperate need for rights-based funding concerning "people with disabilities":

To support re-development of the disability support system for funding of "places" in specific service types of provision of individualised support packages to promote community inclusion and self-determination of people with a disability … These packages were said to be underpinned and based on broad individual whole-of-life plans, as well as individualised support therapy.

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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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