I have been trying to sit down and write a few posts this month so far. But given our constantly evolving circumstances, which now also includes having my right forearm in plaster, typing away on my trusty laptop has not been that simple. Having my dominant hand somewhat hampered is providing its own amusement, as I am having to be very patient (not my strong suit) and constantly correcting interesting spelling and bizarre accidental grammar mistakes!
So, here is our news...I shall try to be as brief as possible...which probably means I shall end up with a post that is the length of a Masters thesis!
1. Suffering through the Subdivision from Hell -
Almost three years ago, our tenants who operate a hairdressing salon within our building approached us to buy two of our shops. We believed that, financially, this would be a sound decision - less rates, less insurance, less maintenance.
However, due to delays, miscommunications, apathy and ourselves 'dropping the ball' as a result of our health issues, we have found ourselves with a blowout of another estimated twelve months before the subdivision can be finalised. This means another year of living hand-to-mouth with no funds from the sale of the shops to reduce our debt.
We are very disappointed by these circumstances, however we intend to propel ourselves back into this project, grit our teeth and wait for the process to conclude.
The good news is that we are now fully informed and I intend to keep in regular contact with the surveying company handling the subdivision, the electrical contractors and the settlement agent. And hopefully, achieve the outcome we desire before we get carted off in long black boxes!
2. Separating the Nincompoops from the Good Guys in my quest for Alex to live 'an ordinary life' and achieve his goal of opening his own drop-in cafe for disadvantaged people before he turns 40 -
Our Autistic Superstar, Alex, is currently 34 years of age. He has been a participant with the NDIA/S since 2019. Those of you familiar with this agency will know dealing with them is not all beer and skittles. The National Disability Insurance Agency and Scheme was set up to assist people with disability achieve their best possible outcomes, along with safety and independence.
Alex, who has normal intelligence, does not understand his current Plan. I struggle with the jargon and changing conditions. For whatever reason, the NDIS is littered with complexity and has a generally combative style, regarding participants and their families who may question their own Plans as the enemy. Added to the general mayhem is the handsome benefits paid to the management agencies. For example, the NDIA pay Alinea, the organisation that employs Alex, over $2000 a week. He gets paid $540 a fortnight...
So far, Alinea has provided no evidence they are providing assistance for his primary goal of opening his cafe. Alex and I have decided that we will give Alinea another twelve months to demonstrate that they are able to do so. Personally, I don't hold out much hope.
For nearly eighteen months, we have been without an effective Support Coordinator, who acts as a conduit between Alex and I and his LAC, whose job is to collect information, prepare Plans and submit them to the NDIA. We were also without a LAC for the best part of this year. In theory, we had one; in reality he did not communicate with us for nearly six months.
We have now secured both a LAC and Support Coordinator, both who appear to be proactive, intelligent, compassionate and communicative. Our ongoing mission is to use Alex's funding effectively whilst attempting to have his Acquired Brain Injury added as a secondary diagnosis. In theory this sounds relatively simple, in reality, this has added to hundreds of hours spent in discussion with Alex's Team, which includes his Rehabilitation Specialist, Neurologist, Speech Pathologist, Podiatrist, Physiotherapist, Rehabilitative Social Worker with a required specialist Occupational Therapist (close to securing one) and specialised Psychologist services (exploring his funding before we assign our chosen practitioner).
Tomorrow will be another day of chasing reports, checking in with our Support Coordinator on updates, and confirming when an OT will be able to start with Alex. We are also part way through a Functional Capacity Assessment, which is valid for twelve months and will form the base of his new Plan.
In addition, the rejection of Alex's ABI as his secondary diagnosis by the NDIA, which we expect, will result in another pointless Internal Review before I consult with the Administrative Review Tribunal in 2026. At least, I know that process relatively well.
3. My personal crusade to improve standards in some private hospital settings -
Michael had hernia surgery at Hollywood Private Hospital just over three weeks ago. Pre-op, the surgeon and anaesthetist and Recovery were all of an exceptional level of care.
Unfortunately, nursing care on the ward was not up to scratch. A nurse who was thoroughly bewildered by Michael's medications and forgot to undertake a second bladder scan after impressing on us that was required as Michael was retaining urine. Unanswered bells. Another nurse who discussed Michael's blood sugar levels loudly and inappropriately at the desk, which we heard. Doors routinely not closed for privacy. A supreme battle to be discharged the following morning - we eventually exited just before 12 noon. And always excuses...Our night duty nurse was the only exception to this list of failures. We have another week to go before I should receive a response to my concerns.
The good news is that my complaints over the years to the Mount Hospital have been both heard and acted upon. I was entering the Mount with some trepidation for surgery on my overgrown ulna bone, which for whatever reason, had decided to push back into my wrist and hand bones, causing pain right up to my shoulder, loss of movement and weakness.
In hindsight, our worries were not substantiated. The hospital has a new and functional lobby. Our shared room (Michael was boarding as my support person) was clean, had been renovated and no longer had a toilet lid that used to try and decapitate his willy mid-wee. All the day nursing staff - Cheryl and Valeria, Cathy, Elsa and Simran - were attentive, promptly addressing our needs and getting us out the door before 11am. Gora, the night duty nurse, tried his best, but his English was not great and did not proactively respond to my feedback that night staff could consider moderating their volume whilst patients are trying to sleep close by. That feedback will be given to the Patient Liaison Officer along with our generally very happy review.
Needless to say, Mister Ben Kimberley, my orthopaedic surgeon was in his usual top form and I owe special thanks to my anaesthetist, Doctor Chris McGrath, who in spite of additional billing, provided me with such exceptional care that I believe he was worth every cent. My heartfelt gratitude to both Ben and Chris, who made both the surgery and post-operative care as painless as possible. And Chris also made sure I was provided with enough medication to go home feeling assured that I would not have to attend my GP for this purpose anytime soon.
4. Plans for the East End Gallery -
We have been operating our Gallery for almost eleven years. The financial reality, which includes the drawn out length of the Subdivision, means we are not breaking even, let along making an sort of profit. This situation has become unsustainable so we have decided on some relatively drastic measures. The Gallery itself will reduce from 150 square metres over 2 shop spaces to 1 shop space with a capacity of around 100 square metres, which will include Rebecca Buglass' Studio relocating to the front of the reconfigured Gallery at the window. We will also have to farewell a number of artists as we will consolidate to local artists and minimal non-Wheatbelt artists who have connections with us and are proven sellers in the Gallery.
These changes will allow us to rent out Shop 3 for additional capital. We hope to attract another artisan(s), but we will accept any reasonable tenant for a long term lease. Stay tuned for the news of our revamp over summer and we hope to open the new look East End Gallery in February 2026.
In the meantime, we have oodles of artists and some fantastic original and unique gift options until we close in our current format on Christmas Eve.
5. And finally, repeated recognition of Michael's status as an innovative and gifted metal sculptor -
Michael has just won the Mixed Media, Textile and Fabric Category at the Northam Art Prize. In addition, another Wheatbelt artist bought 'Hooked' at the same exhibition. We are delighted as this directly follows on from him being awarded the 'Avon Valley Artist for 2025' at the recent York Arts and Crafts Show.
The prize money has allowed him to purchase more materials for the fantastic railway themed panel he is currently planning, plus creating more of his fridge magnet spiders, each arachnid code-named Magda, which has stuck to these utterly unique little creatures since the 1990s. Once we pick them up from being powder coated and attach her red stripe and rare earth magnet, Magda will be back!
These two awards have also given Michael some much needed confidence to continue with his vision as an artist and enter further art awards. He has always had a sense of 'not being good enough', being self taught, but his tenacity and perseverance over the last 45 years is being applauded.
And I could not be prouder of him.
And the winning sculpture - 'In The Mix' returning to the East End Gallery today and looking to come to your home.
