Disability support: your life choices

I don’t normally blog about family issues even though my educational and family situation is inseparably linked. The need to advocate for inclusive education as an educator and parent of a young person with a disability (Autism) is ingrained in my all my behaviour. Lately, the family has been dragged through an emotional quagmire because we were required to review of my son’s eligibility for a disability pension.

Australian disability support pension

After 29 years of active advocating, fighting and back downs you’d think we’d be able to comply happily to the review by relying on an armory built up over a lifetime. Sadly, it’s getting harder to draw on what we need due to the ever-increasing pressure to be “accountable” for the small amount of money that my son receives. I’m completely overwhelmed and sick of the argument that my son has to justify his right to be supported by his community because there are so many people rorting the social security system.

The new and current situation is that people on a disability pension need to both “prove” their disability and “prove” why they cannot work. For people with a lifelong and incurable disability such as Autism and Down Syndrome (and many others) to “prove” they still have a disability is cruel. Though not true for everyone, the initial diagnosis of a disability for a family member can be an emotional time as it was for us.  The new requirement for Centrelink that the proof of diagnosis must be recent meant we had to go through this process again. My son was originally diagnosed with Autism when he was 8 years old. This time we had nine days to acquire this proof of diagnosis.We did get an extension ton these nine days though but not for the 6 months needed while waiting for an appointment to see a public hospital psychiatrist. So, of course, we, his family, paid for a private assessment and report. I bet many were not in a financial situation to do this. More importantly, the process took us back to a time less stable and knocked the scabs off some old wounds.
UPDATE: Feb 2
We thought we had completed the review when my son had his Job Capacity interview at Centrelink. A psychologist at Centrelink completed the interview and said she would be supporting the continuation of his pension as a result. But the saga continues!
Yesterday, my son received a call from an organisation, on behalf of the Department of Human Services, contracted to now “confirm” diagnosis paperwork we had provided to Cenrelink from my son’s  psychologist and GP 2 months ago. I took over the call as my son was unable to understand the situation. Again, the fact that he was diagnosed initially in 1995 and has received loving caring support from family, friends and his medical team for 30 years confirmed diagnosis has to be questioned and verified for the second time in six months. Of course, I rang Centrelink to complain, The person I spoke to was well informed and very responsive. However, I could not accept his political rhetoric about the verification for all diagnosis is “fair” (even lifelong incurable ones like Autism). It allegedly would not be fair that some people’s diagnosis needs verification by this “contractor” and some don’t (please see my blog on the meaning of fairness).

So dear reader, you may ask, “Whats the problem, just do the medical review?” I will respond by saying that we have cared for this young man for 30 years. We responded to his diagnosis with pride, love, and support. He has received state special education as a child; is eligible for support through state disability services; has a health care card; has received private occupational, physio and speech therapy; has received private psychology services; and now, we need to front up for an interview so that a private contractor can determine that the documentation that we have recently had to collect is true and correct! It breaks our heart that we have to prove his diagnosis over and over again.  It isn’t fair. Fair does not mean equal. The brilliant minds in Human Services could surely work out how to personalise this process so that people with lifelong disabilities that cannot be “fixed” are treated with respect.

Tree -hugging, Marxist, greenie

Politically, I believe it is the responsibility of the whole community to support those in need. Therefore, a country’s government must take control of this on behalf of its people. I used to think that taxes contributed to the support of those that find it difficult to support themselves. Today it seems my taxes instead are supporting big business to avoid paying their taxes. There seems to be more expected for corporate social responsibility than there is expected on our government.Then again my Dad always said I was a “tree hugging, marxist, greenie!”. I’m proud to be called that and proud that my son also can proudly wear this label.
Even though he does not “work” for money, my son contributes to our community in  many ways. He is a song and screenplay writer. The words to one of his songs appears in the chapter he and I co-wrote in “Imagination for Inclusion” (Bland, 2016, p. 45). He wrote this song to help others understand his disability.
nice-bloke
My son is an “artist with autism”. His love of Australian animals has endured for his whole life. If he is not donating time and money to “save the bilby“, or painting pictures of them , he is ridding the world of the cane toad.
magpie
Painting of magpie (Bland, 2016, p. 46)
The cane toad is a noxious amphibian that was introduced to Australia many years ago and in many ways threatens the existence of aussie animals. Some nights my son stays awake all night to kill and dispose of these creatures (humanely of course). Each week he takes his butterfly net by public transport across town to a park where he removes and destroys cane toad tadpoles. He also keeps an eye out for any introduced or domestic animals and fish that may upset the eco-system and reports any sightings to the city council. My son does this without any volunteer status or acknowledgement. He doesn’t expect it. Though he was delighted to see that I reported what he did to the local volunteer group he was pleased to see his name in their newsletter.
As do many people with a disability, my son contributes to our community in many and varied ways. He may not contribute to the economy in the usual manner or pay taxes but he does contribute quietly and without fuss to our local environment and arts  community. I think our community gets back much more than it costs our government per fortnight to support him.
I’m proud to say that he too is a “tree-hugging, marxist, greenie”.
img_1038
Photo of my son

 

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2 thoughts on “Disability support: your life choices

  1. I cried when I read your blog as I feel your pain. I also have a son with a disability which was diagnosed from birth and almost 19 years later, we are still fighting for him to receive what is rightly his. He also has an intellectual disability that “wont go away” and if it was not for the strong support from my family we would never have been able to work our way through the myriad of forms and interviews and expensive testing that is required for him to receive what he is entitled to. If we did not have this support and his parents were not around to assist him, he would have no idea on how to fulfil the governments requirements to receive the pension. God help those who do not have anyone to help them. These people are usually the “Crazies” wandering and sleeping on the streets as they have no one to help them. SHAME ON YOU GOVERMENT FOR DOING THIS TO PEOPLE WHO DESERVE TO BE HELPED

    Liked by 1 person

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