Another Brother's Birthday - Many Happy Returns, Simon.

My middle brother Simon was an enigma to me for many years. Too old to be a childhood playmate, like Michael, and not quite old enough to tolerate a little sister, like David, Simon remained a bit of a mystery. Not that I didn't like him - I just really didn't know him. I had a chance to build a relationship with him after I moved to Brisbane to study nursing, but I left for Perth with my then husband at the age of twenty. Simon was twenty-seven, married and a young father.

Distance and family dynamics put the kybosh on any further relationship building with Simon until Mum's death. For the first time in thirty-nine years, all four of us siblings gathered together. Much to my astonishment (but not so much to Simon), we learnt about Mum's role as puppet master against all four of us. Each of  us believed that the others were the chosen ones. Secrets and lies kept us from each other at arm's length. Mum was always very selective with her version of events. And Dad, who adored her, could not protect us. All the manipulation was revealed and we had a chance to connect again after a very long time. That exploration was not entirely perfect, but answered an absolute tonne of questions.

And that's when I really discovered their identities. Michael had been so traumatised by Mum that he had left the family at the age of seventeen and became a Far North Queenslander. David, ever gregarious, had been, I believe, the most forgiving of Mum and her foibles. Simon, the quiet reflective one, had always been the most honest about Mum as well as to her. She would ask his advice, time and time again, and then, not liking his response, would act as she pleased, often to her own detriment.

Spending precious days with Simon at his beautiful home high above the Burnet River outside Bundaberg, I was awestruck. He was generous, but did not suffer fools. He was witty and personable. He welcomed Michael and I into his life. I learnt more about Simon in snatches over the past four years than I ever imagined. He really wanted to know us too. Simply the best.

So, happy happy birthday to you, my quirky, charming, spirited brother, Simon. The Beverley Hillbillies wish you the best of times. Live long, be happy, stay safe. Looking forward to seeing you again when COVID 19 ceases to keep us apart.

Love you, Simon.

On the Burnett River...

In Far North Queensland...

On a ski trip...

Tim (Simon's son), Michael and Simon...

Far North Queensland...

Four siblings at Mum's funeral...

Four siblings at Dad's funeral...

Such a shy and retiring chap!

 

On The Eve Of The Queen's Birthday Sundowner...

We are rapidly approaching the Queen's Birthday long weekend here in Western Australia. Most other Australian states celebrate the Queen's birthday in June. Queensland celebrates the Queen's Birthday in early October. None of these designated Monday holidays bear any resemblance to the actual birthday of Queen Elizabeth II, which occurs at the end of April. I have always been mightily amused by the naming of our so-called holidays. For example, WA Day, held in June, has no relevance to the actual founding of Western Australia. And the cheek of New South Wales and Victoria, who actually have thirteen public holidays as opposed to Western Australia's ten.

Enough of my whinging. That can be put off until next week when I become an bizarre reflection of Don Quixote, tilting at the NDIS, rather than windmills, once more. 

The East End Gallery has, absolutely, saved my bacon over the last couple of days. A steady stream of guests has encouraged my natural enthusiasm about our art space. In addition, three of our artists, Mick Cotter, Sue Martin and Jan Cross have all contribute new pieces. As a result, the Giftshop is bulging with present ideas galore for the upcoming gift season. If you need a last-minute birthday gift for a favourite aunt, or an anniversary gift for Mum and Dad or a Christmas gift for your beloved, we can provide you with the perfect present by an original artist.

We are approaching seven years old. Much as I would like to shout from the rooftops, there are no shortcuts to success. We have tried myriad processes over the years to enhance our profile. Our web page, Facebook and my blog are some of the avenues we have explored. Interviews and photos by the West Australian newspaper Travel Guide have helped us immensely. State restrictions due to COVID19 have introduced a new cohort of guests to us. Events such as our Sundowners bring new and previously welcomed friends and guests to the Gallery. Michael continues to challenge and be challenged by Instagram.

Tomorrow will be one of our Red Letter Days. Coffee and cake in the Gallery from 11 am. Sausage Sizzle from 5.30 pm. Live music from 6.30 pm. All free of charge. Please bring a plate and bottle to share. A chance to peruse the East End Gallery at your leisure, chat with like-minded people and enjoy a fabulous evening of food, art and music.

We look forward to seeing you!

Lorraine Pichugin

Irene Osborne

Skulls by Tamara Nixon

From the Giftshop to the Gallery

Pauline Lakstins - 

Red Brown

Jenny Couper

Paul Kendall and Jayne Southway

Len Zuks

Christine Davis - 

Belinda Kay and Murray Cook

Brett Taylor

Jan Cross -

Giftshop views -

Always Look On The Bright/Right Side Of Life...

This week has been One for the Pool Room. That saying has been borrowed from that fabulous Australian movie "The Castle", designating an object so revered that it would be housed in the Inner Sanctum. My rendition of this week is somewhat tongue in cheek. 

The NDIA have rejected my request for $3700 of Alex's funding to be used for reverse cycle airconditioning in his unit, which would enhance his general quality of life and his daily functionality. Apparently, I need not submit enough medical evidence (!) We are back to Square One.

Alex also lost all his savings this week. A four-year-old scam involving Apple cards, release of information on the card and transmitting that code to the scammer emptied Alex's bank account. If I ever get hands on that scammer, I may forget my pacifist tendencies.

Michael and I hoped that an ill-advised shareholding decision from 2007 might involve the sale of an asset this week. The other shareholders, eager for more for their buck, will reject an offer. We are desolate and I am angry. Any monies that could be submitted against our mortgage would help us. Alas, this is not to be.

What can I do in the face of such adversity? I raged and cried on Tuesday. I took action researching on Wednesday. Today, I have been in the Gallery which is becoming my happy/sane space. Although a Thursday, we had a steady flow of guests through, all keen to enjoy the experience in our eclectic atmosphere. 

I could almost forget my mental fatigue, my frustration and the anguish of sparring with the NDIA. They do not seem to care about who they are suppose to be assisting. Alex and I are so grateful for the funding, however the monies need to go towards those supports that make a difference to Alex's life, rather than what the NDIA designates he needs.

So, the East End Gallery helps keep me on the straight and narrow. We are focusing on the coming long weekend. Tomorrow, we open as usual. Saturday heralds one of our famous Sundowners. Sunday is the Day After. Monday, we intend to close at 2pm as we are travelling to the Big Smoke to see the Grandbaby.

I need a couple of days of down time. I am exhausted. However, between now and Monday, I intend to be filled with vim, vigor and vitality. Stuff all my issues. I need to run the joint through this long weekend.

Here is the lowdown -

• Friday - open 11 am - 5 pm
• Saturday - open 11 am until 12 pm
• Sunday - open 11 am - 5 pm
• Monday - open 11 am - 2 pm

So do yourselves a favour and turn your vehicle of choice in the direction of Beverley this long weekend. I promise you will not be disappointed!

Visitors Centre Beverley...

Hotel Beverley...

The Station...

Spring in Beverley!

Public artwork...

Town hall...

The Bank House...

Dead Finish museum...

Freemasons Tavern...

June Sundowner images - 

Would Somebody Please Enlighten Me Of the National Disability Insurance Agency's Real Purpose?

 Delay, Distract, Deter, Deny, Distress...Is this the mantra of the NDIA?

I am afraid that my sense of humour is either non-existent or entirely black at present. Last week was pretty full and hinted of some hard-fought promise. A diagnosis of Severe Obstructive Sleep Apnoea, followed by appointments with the GP and a sleep specialist made for a very hectic few days. We hoped that a financial millstone around our necks named Wanerie might be sold so we could free ourselves of that disaster. And then, on Friday, Alex's new NDIS (National Disability Insurance Scheme) plan arrived in the mail...dated 1 September 2021.

This bureaucratic document is so complicated that I didn't fully understand the contents for a couple of days. This plan was instigated by Alex's need for reverse cycle airconditioning in his Housing Authority unit to improve his quality of both life and daily functionality. Plus, I had begged for Support Coordination to assist us both in our adventures in NDIS Land. I had gathered quotes, reports, supporting medical letters. All this was delivered to the Local Area Coordinator in the first week of July. She didn't submit the revised plan until 3 August. 

The Housing Authority had come to the party and were supportive of Alex's airconditioner installation. The only point they insisted on was the removal of the airconditioners should he ever leave his unit...

Snag 1 was recognised by good friend, Stacey. There was absolutely no mention of airconditioning in this new three year plan. Plus, she informed me that flexible funding could only be used on items up to $1500. Alex's airconditioning quotes had come in at $3700...

Snag 2 was the amount of Support Coordination funding - $2400 over thirty-six months. As this service normally starts at around $100 per hour, we were to be funded for eight hours each year. Like throwing a bucket of water at a firefront.

Snag 3 were the number of typos - my name, Alex's name, his Dad's name. The LAC, who wrote the plan, explained these kinds of errors are common and would not cause any issues with the plan. Oh, cynical me...

Snag 4++ was the final clincher. After contacting the LAC, she informed me that the NDIA had rejected funding Alex's airconditioning needs. She was adamant she'd emailed me that information. She hadn't... And apparently, the only excuse given for refusing the airconditioning was lack of medical evidence. What an absolute joke.

Eighteen months after beginning this journey, I am back to Square One. However, in spite of my dismay, I had tottered back on top of the horse. I have changed Plan Managers to a local group in Perth. They have actually provided me with a Service Agreement without me having to ask! I am researching Assistive Technology assessors to reproduce in NDIS jargon on an NDIS form all the daily functionality information that was gathered in a comprehensive assessment in June. I have requested the background notes for how Alex's plan was structured. The new Plan Mangers are exploring advocacy on my behalf. I have found, buried in the annals of NDIA gobbledygook that mid-range assistive technology items can be funded up to $5000. I just have no idea (as ever) on this process.

I am still in my dressing gown at half past three. I have done nothing else today apart from water my courtyard after I struggled out of bed at ten-thirty. Michael has fed me and looked after my needs. He should really be running as my mental state is so frayed, I have snapped at him frequently over the last couple of days. He is truly my knight in shining armour.

I shall leave searching for Support Coordinators until I hear back from an advocate. My major priority is securing an Occupational Therapist who can perform the AT assessment and complete the form, so I can be ready for the coming review and desired reversal of the NDIA's decision on funding these needed airconditioners.

I am so tired. My sleep study recorded I had breathing interruptions thirty-eight times an hour and had no deep sleep whatsoever. Michael's anxiety is high and his short term memory is erratic. We are back in the Gallery tomorrow and we are holding a Sundowner on Saturday evening. Yesterday I seriously considered just packing a bag and running away. Where? And why? All these issues were not going to be magically solved. And Michael and I are at our best together. So, I drowned my sorrows in vino and woke with a thumping headache.

I should get up from my chair. I think I will shortly, now that I have bared my soul throughout cyberspace. Maybe a spot of routine dishwashing and vacuuming is just what I need.

Stay tuned for my next riveting instalment. In the meantime, if anybody out there has a magic wand, I'd be quite partial to borrowing it!

And if the NDIA would actually lift its game and become relevant to people like Alex and me, I'd be most grateful...