Family member of a person with disability
I have cared for my severely intellectually disabled son for thirty-nine years and just three months ago assisted his transition into supported accommodation. I am the person who knows best his needs, his wishes and his aspirations. My son is a most vulnerable Australian citizen. He is pre-literate and pre-numerate and his language is elementary. He is strong and fit and contributes to our society through his hard work at his ADE. It is not possible for him to make his wishes known verbally and when offered choices, he will always select the second of two or the third of three options. He is a voiceless person and I have been his voice for almost four decades.
However, my voice is also unheard. I have no funded representation and no-one speaks for me when I try to represent my son. I applaud the submission written by Nell Brown and second every word she has written. I want you to consider it very carefully. The needs of the severely and profoundly disabled are not being represented by the current advocacy system and they will not be represented until there is specialized and discrete advocacy for this group of people. It is obvious that the greatest part of this advocacy will be made up of the people who know this cohort best – the families.
I would urge every person considering this issue to make a point of viewing a recently released Australian film called “On Richard’s Side”. Here you will see portrayed a man quite similar in capacity to my son. You will see the need for massive support in the exercise of any choice and control he has in life and the natural support networks that have been put in place.
Over many years, I have found an occasional individual advocate to be of assistance to me and my son. However, in general, the advocacy sector has a dismissive stance towards families, who do the bulk of the care but have no voice at the discussion table. The current position of ADE’s in this country is an example of this.Their very existence is being placed in jeopardy by advocacy networks who are acting AGAINST the best interests of twenty thousand people with a disability, one of whom is my son. This situation has arisen because of the hegemony of the ideologue over the people at the grass roots with the lived experience. It cannot be permitted to continue.
We must have a national funded peak advocacy body specifically for those with severe and profound disability. It must be acknowledged that at present these silent Australians are not being heard and that current agencies are not well representing them. In the disability advocacy sector, one size does not fit all.