Tragically, neither his long and difficult struggle for personal recognition and assistance, nor his admirable labours in achieving a PhD from one of this country's fiercest competitors in the race to be known as 'Australia's leading university' have enabled Dr. Gibilisco to comprehend the reasons he and the 2 million or more other disabled AND NON-DISABLED Australians are STILL being discriminated against and similarly marginalised in this, our ‘rich country’.

For Dr Gilibisco ...

" ... 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"

He goes on to assert that ... “Advocates in the disability sector are in general unaware of what is holding up the implementation of processes that would advance such inclusion.”

Indeed.

He further points to ...” the failure of the Department of Families, Housing, Community Services and Indigenous Affairs (FaCHSIA) internet home page” ...which ... “can be difficult to navigate ... for many people with communication impairments and high support needs.”

Citing research into what is a GLOBAL social problem, he points to the finding that

"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 ..."

Three abiding questions remain un-addressed and un-answered

1)Why is this so?
2)Are other Australians and world citizens similarly affected? and
3)Who benefits or profits most from such appalling injustice?

Such questions are particularly apposite in our capitalistic ‘Christian Democracies’.

Given the increasing number of marginalised and neglected citizens of this ‘rich country’ and the proliferation of ‘professional’ Middle Class advocates occupying comfortable sinecures and lifestyles in the burgeoning disability and other ‘charity’ INDUSTRIES, the answers becomes apparent: the Australian community remains increasingly divided by socio-economic class interests and structures

People with high support needs are likely to be receiving government help of some kind, even those who are self funded.

My own experience, upon becoming a quadruple amputee, is that no one person is able to understand the complexity and diversity of the State, Federal and Local Government support services available. I am fortunate to be able to communicate easily, and i am not afraid to ask ‘difficult’ questions. Learning about support services can be a bit hit and miss – it really depends on the knowledge, experience and enthusiasm of an individual’s support worker (if indeed you have one). This leads to poverty, as well as a lack of opportunities to fully participate in the community.

There are many Peer Support groups, but as Peter says, if you can’t easily access the electronic media, it can be difficult to know they exist.

I have a friend who is legally blind, and although she belongs to a major “blind’ organisation, she is not kept well informed about services that would enhance her life. Recently my friend needed to access an advocate, and it was very difficult for her to know where to begin.

Whilst being aware of privacy issues, nevertheless i wonder whether some kind of national register could be developed to link people with disabilities with a local active support / advocacy group

Peter is perfectly entitled to raise the issue of a lack of awareness of advocacy services under the National Disability Advocacy Program (NDAP) for people with high support needs and in particular for those with disabilities that make communication difficult.

On the FaHCSIA website at http://www.fahcsia.gov.au/sa/disability/progserv/providers/NationalDisabilityAdvocacyProgram/Pages/NationalDisabilityAdvocacyProgram.aspx there is a link to a list of funded advocacy agencies.

However, how to the people Peter describe:
1. Know where to look for this information? and
2. Access it when it is not in Easy English or a format that suits their communication needs?

The agencies that are funded under the NDAP have to comply with the Disability Service Standards, one of which is Service Management. This means it is the responsibility of the Agency receiving the funding to establish practices and policies for promotion and communication of its aims and objectives with service users and stakeholders.

Some do this better than others, but it remains a sad fact, that those with high support needs cannot access the usual sources of information despite there being a much wider range of options such as social media than ever before.

Agencies have to be more innovative and so too does FaHCSIA otherwise those who most need the services of an advocate will remain ignorant of even the existence of them through no fault of their own.

My experience is that Disability Advocacy services will only help those with an intellectual disability. They are simply not able to comprehend anything else.

I guess it also depends on what you classify as high support needs, disability, etc. As a person with a very high IQ, but profound autism I have found myself left out in the cold in regards to any help or support. I cannot cook, clean or the like due to profound sensory issues, I cannot walk out the front door alone and I eat very few foods and very few food textures. Just breathing is difficult. Being able to articulate my problems leaves me being told to fix myself by every service. I struggle to communicate verbally and have very limited speech. Hence I prefer to communicate in writing.

I have no living relatives and live totally alone. If it was not for GP's and Psychiatrists who have at times done shopping for me, etc, I would be dead.

In attempting to access disability advocates to support me in my quest to get some assistance I have had email replies that said that since you can put two sentences together you do not need our support, we help people who cannot help themselves and there carer's. I would have thought that carer's could put two sentences together!! If they had said that they did not have the funding or spaces to assist me I would not have been so offended, but to tell me to just help myself, which is what I have been attempting to do for DECADES is beyond me.

I did at one stage email the Disability Services Commissioner for advice in Victoria to recieve a reply email saying that they could not assist me unless I rang them and spoke to them in person. How can someone who cannot speak ring someone??

So yes, my experience is that disability advocacy eludes those who need it most.

Hi Brooke,

I found your story compelling. It highlights the complexity of a condition such as autism. That you are so articulate in written form is obvious and, yes, it's because you are able to express yourself to such a degree that probably denies you the help you need.

My son has been diagnosed with (high-functioning) autism, although he is nowhere near as profoundly affected as you are. Being a spectrum condition that impacts behaviours and sensory perception, I think society is still coming to terms with its impact on the lives of those affected.

My way of dealing with things has been to try and minimise stress in my son's life. He is homeschooled, although he socialises in small group situations and we spend a lot of time just out in the community. I often read of parents with autistic children struggling to cope - especially because the child is high-functioning - who cannot access special care because the child does not have an intellectual disability. They are then sent around the twist trying to cope with school authorities who don't understand the condition...very sad in many cases.

I hope with your gift of expression that perhaps you might think of writing about your situation - it could provide a lot of insight to help with general understanding.

Cheer