"Oh, this old world keeps spinnin' round It's a wonder tall trees ain't layin' down There comes a time"...
The album "Comes A Time" was released in October 1978 by Neil Young. I was seventeen. The simple and melodic song that gave the album its name has grown older with me through the years. The lyrics echo the speed of life as we change from spontaneous to settling. "You and I, we were captured..."Then the wrestle to keep our individual souls from disappearing. "We took our souls and we flew away..."
Yet, for me, the theme remains firmly about time flying past us and how we make the most of who we are. We cherish the joy, endure the sadness, rage against the unfairness. We worry about breaking the rules, exposing ourselves to the universe and long for justice and equality. Well, most of us do...
I continue to follow the saga of Christian Porter, our Federal member and whether he did or didn't rape a seventeen year old girl on a school debating trip. This week's revelations have been all about the invisible donors who assisted him with his substantial legal fees after he took the ABC, our national broadcaster to court. The whole sorry story has been a lose/lose situation. The alleged victim has taken her own life. Mister Porter only supports entitlement - his own. That his anonymous benefactors cannot be named must suggest they are persons who wield great power over our supposedly democratic system. Like Voldemort...
Let's not forget the bravery of Brittany Higgins, another survivor of alleged sexual assault, who has somewhat faded from the headlines. Her attacker continues to wander freely. Again, due to political machinations. This kind of preferential treatment doesn't happen to the average Australian. We should be outraged by these blatant acts of favouritism.
This last week has been reminiscent of Alice down the rabbit hole. The Art Deco two day welding workshop (funded by the Wheatbelt Health Network) was an absolute triumph for both Michael as facilitator and all our participants. Creativity was rampant, belonging was unspoken and camaraderie was brilliant. We were both shattered by Thursday evening, but continued to enjoy a further excellent three days of enthusiastic guests and very welcome sales.
Except, Michael did suffer a few mishaps. Three to be exact. Grazing his arm whilst transporting an anvil on a trolley. Dropping a painting whilst trying to hang it. Then coming off a step ladder backwards after tangling his feet. His left wrist quickly blew up and rapidly revealed some spectacular bruising. I was all for heading to Northam Emergency Department on Sunday evening. Michael was not keen. Hence, we travelled to Northam Hospital on Monday. Michael minimised his pain and we were promptly placed at the bottom of the triage system. We waited five hours for the X ray and six hours for a non conclusive result. Give me strength.
Hence, we are off to the GP on Monday and the Boy Wonder (our orthopaedic surgeon) on Tuesday. What the X ray did confirm was extensive damage to the wrist caused by age and arthritis. Not unexpected. So regardless of whether Michael's wrist is actually broken or not, surgery is looking imminent.
We enjoyed welcome respite on Tuesday, attending a delicious luncheon, courtesy of the fabulous Di Mainwaring at her home in Pingelly. Her Studio Gallery on Pingelly's main drag has just celebrated its first birthday. Well worth a visit. Arriving home in the late afternoon, we retired for a Nanna Nap and emerged refreshed an hour or so later.
Yesterday was a reminder of my lack of knowledge and the frustration that stems from that revelation. After struggling with the NDIS (National Disability Insurance Scheme) all year, I was lucky enough to meet an advocate and a representative from Alex's Plan Manager for a marathon two and a half hour meeting. I was immersed into a system that I had not wanted to engage, but needed to be dragged kicking and screaming into comprehension that the way to understand the NDIS was to learn the system.
My eternal gratitude to the two powerhouses who attended our primary meeting and attempted to educate me. I am sure that they will be able to help me navigate through the current miasma to clearer explanation. Today, I was given my first taste of their efficiency. An account portal from the Plan Manager. An invoice to view and approve. I was giddy with my growing knowledge.
I can't rest on my laurels. The NDIS is a juggernaut. That Alex has funding through the agency is a start. However, this leviathan is also obstructive unless one is cognisant with its many administrative tentacles. Once more, the onus is on the consumer to excavate for answers, rather than the agency freely giving helpful information.
My new advocate's opinion was that the NDIS would never fund airconditioning in Alex's unit as he didn't privately own his residence. Apparently, this is present somewhere in the NDIS' encyclopaedic documents. Yet another piece of the puzzle that was not easily apparent to me. Why do I endlessly feel like a mushroom?
I am very aware that we are lucky here in Australia to have a Disability Insurance Scheme. But, I am really angry. Those of us who live with disability or support a family member with a disability are being short changed by smoke and mirrors. The NDIS is as clear as mud for so many of us.
I have been in negotiation with the National Disability Insurance Agency to use $4000 of Alex's funding to install reverse cycle airconditioning in his Housing Authority unit for over a year. I realise now that was always an unrealistic dream. I am tired of being afraid that I may cause offence to the NDIS gods if I speak out. I have come to learn that the Great Hope for the Disabled is actually an elaborate bureaucratic maze that my son Alex, as a participant, has little chance of understanding. His current NDIS Plan is a mystery to him.
If my disclosures cause issues for further "change of circumstances" involving Alex's NDIS plan, then I will know that there is a distinct system for the Entitled and the Non Entitled. I refuse to be cowed. All I wish is for other NDIS participants to avoid the anguish I have experienced over attempting to negotiate with the agency with one hand tied behind my back.
Comes a time...
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