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Disability advocacy: why does it elude those most in need?

By Peter Gibilisco - posted Monday, 6 June 2011


When looking to the National Disability Advocacy Program (NDAP), many people with high support needs will believe there is plenty left to be achieved in disability advocacy. Still, Advocates in the disability sector are in general unaware of what is holding up the implementation of processes that would advance such inclusion.

The NDAP has as its main objective the provision of assistance to people with disabilities in order that communities become inclusive of people with such human differences in an ongoing recognition of their rights. These aspirations have been stated under its aims and objectives:

  • Provide appropriate and timely advocacy to people with disability that addresses instances of abuse, discrimination and neglect;
  • Inform people with disability about their rights and responsibilities, and support them where possible in making informed decisions about issues that impact on their lives;
  • Contribute to raising community awareness of disability issues;
  • Contribute to government policy, service and program development.
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However, there is considerable unmet need in advocacy for people with high support needs. If this lack is recognized, and measures taken to provide adequate advocacy, it will give them their own voice - even if their abilities to communicate are significantly impaired through disability. I number myself among these people. The last time I publicly drew attention to the number of such people in our community was when I was speaking for the Coalition of Disability Rightsduring the 2006 Victorian state election campaign. 

In 2003 there were just over 300,000 people with high support needs in Victoria according to the Australian Bureau of Statistics. And there are many people with such needs who should, and probably would, avail themselves of high support services if there was a more powerful advocacy on their behalf. No doubt we need a better understanding about the best way to advocate our needs but we also need to avail ourselves of the skills that are offered by advocates of people with high support needs. Better understanding all round would undoubtedly increase demands and also open up the life possibilities for all concerned.

Consider the fact that many people with high support needs are not able to access such advocacy services due to a lack of awareness and decreased capabilities that result from an inability to the pick up the phone to make initial contact. In other words, they have a lack of awareness of the kind of downward spiral, which becomes commonplace to many of those with high support needs. 

This is further noted by the failure of the Department of Families, Housing, Community Services and Indigenous Affairs (FaCHSIA) internet home page. It can be difficult to navigate through for many people with communication impairments and high support needs. It also has no easy English web pages to explain the NDAP. What I’m trying to point out is that we need a policy that will help deliver an upward spiral.

Jenny Cooper reports in Inclusion our destiny?: Looking at worldwide trends, the pattern in countries with supposedly the most progressive records of inclusion is that the most severely disabled get left behind, i.e. an even smaller minority even more segregated.

At one stage my support worker gave advice to another severely disabled client who required an advocate, who was unaware such specific services existed. Once he had made that initial contact to an advocate they were able to assist him appropriately. I know of this case because my support worker acted as "interim advocate" to link this fellow with the necessary form of advocacy.

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That's the link I'm trying to put my finger on here. 

So it is not only a matter of there being a need for an increase in funding. There is also a vital need for an increase in awareness within the disability sector, especially about what needs to be funded to help the advocacy process of people with high support needs. Individual advocacy is needed to enhance the lives of people with high support needs by advocating for support and empowerment.

Jenny Cooper also believes that society has not yet fully acknowledged that people with severe disabilities have feelings and the right to dignity. The point is that people only act if they believe it’s bad enough. There, firstly, is a need to tolerate diversity and a need to live alongside those with high support needs.

For example, a person with a severe disability such as myself might search the internet to find an applicable advocate via so-called "social media" like Facebook and other such devices. Because some people cannot communicate via traditional methods such media raise the hope that new levels of society-wide awareness can be achieved. 

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Article edited by Jo Coghlan.
If you'd like to be a volunteer editor too, click here.



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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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