Having spent a wonderful evening with artist Kerry Scally and her other half, storyteller extraordinaire Don in Dumbleyung, I was going to write a superlative post of fabulous fun, great conversation, good pub food and the warmth of their home, literally and figuratively.
Unfortunately, the National Disability Insurance Scheme's woeful shenanigans have confounded and enraged me once more and driven my cheerful Dumbleyung observations away temporarily.
This afternoon, somewhere between Katanning and Kojanup, I received a phone call from the NDIS. As per usual, the call was made from a private number, which meant that once I had recovered from my fury, I was unable to respond in a calm, measured manner and ask coherent questions. I am convinced that the NDIS loves to label parents such as myself as hysterical and ignorant, and rather than give us a chance to digest information and gain further understanding, the organisation is encouraged to deny us the right of reply.
Presently, a "Change of Circumstance" relating to Alex is before the NDIS. This document was written to emphesise and have recorded all Alex's lifelong conditions and the total impact on his daily functional capacity. Even though this added document provides evidence to support Alex's long term requirement for reverse cycle airconditioning, it has not been considered at all. Plus, I was told by What's Her Name this afternoon that the NDIS does not provide funding retrospectively, of which I was unaware. An internal review is pointless as the NDIS would reject the request on the grounds that they do not fund retrospectively. In addition, the funding request was based on Alex's "current" diagnosis of Autism and Intellectual Disability. The NDIS is in receipt of documents that explain his chronic lung conditions and his neurological status. They just chose not to act upon them. And of course, poor people with serious conditions shouldn't receive funding for airconditioning from the NDIS...
This saga has been ongoing for two years. A generous benefactor paid for Alex's airconditioning after a year of frustrating dead ends offered up by the NDIS. They just love operating as a Department of Stealth and Total Obscurity to devalue participants and insult their supporters.
Alex's life goals have constantly been thwarted by top heavy bureaucratic organisations. Alex's volunteer position at the Warehouse Café in Shenton Park ceased due to lack of funding. His paid employment at the Swan Friendship Café in Midland was quashed due to a lack of any political will. His only other paid position was a six month contract filing at the Lions Eye Institute. He was bored out of his mind but thrilled to have a paid position.
Most recently, Alex has been working as a Café Attendant at Paraquad Industries, which is operated by Alinea. This is supported employment for which Alex is paid a portion of the minimum wage. He loves his job and after a rocky start, I trust the staff's good will and interest in him and their guidance of him.
I had grown really comfortable with the concept of Alex staying with Alinea for the entirety of his working life. Then has come another bombshell. Activ, an organisation also providing supported employment since 1951 has announced the cessation of their group workplaces due to changes in funding provided by the NDIS.
This is a terrible act. The NDIS and the Minister could access any number of reasons to fund Activ continuing its operations as they are. Justifying that all Activ employees could be placed in other workplace settings is horribly wrong and a deceit.
Now, I have concerns for Alinea. If Activ can be targeted in the last week of an election campaign, then any organisation or person who receives funding from the NDIS is at risk.
When will the powers that be recognise the worth of all Australians and support their well being and dignity? And who will take up the mantle of advocacy once all of us frustrated, determined and bloody minded parents fall off the mortal coil?
All Australians deserve to live well.
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