What A Difference A Phrase Makes!

Those who know me well will confirm that my sense of humour can be somewhat quirky. I have always used humour as a panacea to counteract the ugly, the awful, the unthinkable. This week has been one to remember. I could say for all the wrong reasons. Or I could say that I have gathered more knowledge in this week that will assist me in my future endeavours.

Jan described me as a terrier this afternoon. That I will continue to pursue the good fight even in the face of difficult circumstances. I would like to think I might be a Jack Russell terrier in disguise. Because Jack Russell terriers tend to be pretty talented at sniffing out RATs. Imagine my surprise when today I discovered there was a RAT Division within the Health Department of Australia!

Last night, I penned a complaint to the Health Department regarding our inability to obtain our concessional Rapid Antigen Tests, due to 'the record" stating we had already received five of these tests. The Banksia Grove pharmacist believed there was a scam in operation. I had no reason to question her view. Until I dug deeper...

Since I had not even received an acknowledgement of my complaint to the Health Department, I decided to ring the switchboard again. The same young man answered. I reiterated my desire to have "the record" corrected, so I could legitimately receive our RATs. Then he confessed there was no scam, just a programme foul-up. The programme would apparently "roll over" on 1 March. He could not say if the "glitch" would disappear with the "roll over".

I was calm. I worked very hard not to lose the plot. I asked to speak to his supervisor. He protested that his supervisor would say exactly the same as he had. Fine, I responded, I will have another person who knows my story. I added I would keep asking to speak to the next rank up until the entire Health Department was aware of my situation.

Then I uttered that phrase that brought progress. "If I don't have resolution to my problem, I will go to the media"...

Within five minutes, I was speaking to Agent 99 from the RAT Division of the Health Department. I kid you not. She had me in the palm of her hand by showing me understanding and empathy as well as assuring me she would get to the bottom of this problem and phone me either this afternoon or Monday. She gave me her word. I would like to think she was one of the Good Guys and I live in hope.

I hope she can deliver. This process has been a catastrophe from start to finish. We can't be the only ones affected by this programming mistake or error. And what really annoys me is that there was no pathway to solve this problem, no accountability, no regret. I spent over ten hours on the phone chasing ghosts who did not want to be found. I had to up the ante in order to speak to somebody who sounded like she knows what she is doing. That I had to resort to those tactics was not what I wished to do.

I will follow through if I don't receive satisfaction. I would prefer not to. When will our politicians and departments recognise they are here to assist constituents, rather than obstruct us? Think about that question as we prepare to vote in the upcoming election.

Stay tuned for the next exciting instalment...

My alter ego...

The alter ego of the Health Department...

Ghosts in the machine...

Satire?

Truth?

The game...

I hope that this staff member of the RAT Division lives up to her promises.

When My World Turned Upside Down, Where Was My Towel?!

In a feeble attempt to prevent this post from being too serious, I am tossing in a reference to the "Hitchhiker's Guide To The Galaxy". According to that invaluable publication, which has "Don't Panic" in carefree red lettering on its front, a towel is vital to the average interstellar traveller.

Here is the Guide's extract about possessing a towel -

"Towels are the most useful thing it is possible to have handy in a crisis. One of the first things that Ford Prefect did for Arthur Dent after the demolition of the Earth was to equip him with a towel.

They can be used for snaring birds whilst falling from a three-mile high marble statue.

They can be used to signal temporally unstable spaceships by fossilizing them in planetary strata.

They can be soaked in nutrients to provide sustenance in awkward situations (Although, as Zaphod Beeblebrox found, this is not a terribly tasty solution to hunger).

They can also do a really good job of drying between your toes.

The Hitchhiker's Guide is full of suggestions for successful towel deployment. It is worth noting that a cup of white vinegar in a wash will help keep your towels fluffy and soft."

A towel can also be rolled up as a pillow or become an impromptu cloak. Pity that I faced none of these scenarios yesterday. A Pandora's Box full of other issues caused me to wish that all could be solved by the comfort and practicality of my towel.

Yesterday began early. Alex was having a further Daily Functional Capacity assessment, to provide occupational therapist Mel and observer Alice to have the necessary information to address the dreaded NDIS Assistive Technology form. Support Worker Jacob was also there, undertaking his final shift with Alex. I made up the last of the crowd in Alex's unit.

Two hours was spent reviewing and recording Alex's current baselines. His unsafe flooring was duly noted and photographed to be attached to a letter for the Housing Authority. Mel was really pleased of the progress made with our Support Co-Ordinator Shannon, but was exceedingly puzzled by the lack of her hours funded by the NDIS. She will submit Alex needs more Support Co-Ordination hours. We will also request occupational therapy sessions, more support worker hours and hopefully enough evidence and grounds for the AT form to reimburse my dear friend for the cost and installation of Alex's air-conditioning and solve the confusion surrounding his orthotic funding.

As we were winding up, I mentioned that Alex and I were seeing his doctor later to discuss the mystery of suspected head trauma identified in a recent MRI. Mel asked me to send her the details when I had a chance. Shannon had already done so. Alex and Jacob set off to do some shopping and I stopped to pick up dog log and an easy dinner for Michael and me. Ominously, the specialist dog log was all held up somewhere between the Eastern States and us, so I settled for some kangaroo and sweet potato mixtures. Little did I realise that was just the beginning of some unfortunate events.

Alex, Jacob and I reconnected at the doctors' surgery. Mark Flynn is one of those fabulous quacks that has a tendency to run late. Yesterday afternoon, he was running late. We eventually had our turn. Then the bomb shell. Alex's MRI had been interpreted by a radiologist and a report had been written. The findings were that Alex had sustained a significant brain injury to both his frontal lobes with some cerebellar and occipital lobe involvement. Probably very early in his life. Which meant that his autism diagnosis may have been given incorrectly as his symptoms mimicked those of being on the Spectrum.

I was stunned. Mark was flummoxed. These were not the results he was expecting investigating Alex's blank episodes which had occurred since he was a very young child. Mark theorised his blank episodes could have been triggered by scar tissue from the trauma. I remembered insisting Alex's capabilities and personality had changed after his second cardiac surgery in Melbourne in September 1992 at Melbourne's Royal Children's Hospital. Who listens to the parent?!

This injury had not been caused by a knock to his head. This was way beyond concussion. This was not damage caused by a stroke. Something terrible happened to Alex around that time when I wasn't with him. The only times I wasn't with him were when he was undergoing surgeries in hospital, either in Perth or Melbourne or if I took a break and left him in their care.

Last night I did not sleep much. I had deciphered some of the scarier aspects of his MRI report.  I followed a timeline in my head from Alex's birth. His conditions, his surgeries, his hospital stays, his diagnosis with "developmental delay and hyperactivity" at two years of age followed by his autism diagnosis at four years seven months. He had never toe walked and never head banged. That he was frightened and lost had been obvious. And I remembered the thrill of his success gaining skills using Applied Behavioural Analysis. He's had a social trainer providing a physio and OT programme, speech therapy for thirteen years and my brilliant babysitter Kacey teaching him structured play. And other children with Autism had always unsettled him.

But nobody had thought to look at his brain...

Mark has requested an appointment for Alex to be assessed by Neurosciences at Graylands Hospital for neurological deficits. Unfortunately, Alex had to cancel (!) his appointment for an EEG as his chest "sounded horrible" and we were sent for a COVID test instead yesterday afternoon  Neither of us has COVID.. We also have to reschedule his EEG and see a neurologist. 

Alex was confused and uncertain by this new information. Mark and I both assured him that he was still Alex. The possibility of a diagnosis change didn't alter him one iota. Then I joked that I had hoped Alex would be less complicated as he become older and I could sit back, do very little and drink vino. We all laughed...

My young man, Mister Alex Christopher, has overcome so many obstacles in his thirty years alive. He loves exercising, going to Church, meeting his friends, being a Café Attendant at Paraquad, enjoying a movie with Cal, being uncle to Miss Immy and putting up with his Mother. He dreams of opening his drop-in café for disadvantaged people. Alex is my Superstar.

And I love him to bits.

Snippets of Alex -

An Open Letter to Health Minister Greg Hunt and NDIS Minister Linda Reynolds...

My emotional recovery from the mental exhaustion and distress caused by yesterday's chaos is slowly improving. Even so, I spent another three hours (or so...)on the mobile today seeking information to a problem that began like a gentle campfire and ended up the size of a raging inferno. And guess what, I finally traced the issue back to the national Department of Health, after more than ten hours chasing the source.

I'll try and give the Reader's Digest version. Whilst staying at Callum and Bron's wonderful home and enjoying Miss Immy's antics on Sunday evening , I received notification that the Banksia Grove Wizard Pharmacy had supplies of Rapid Antigen Tests available to concession holders. Whoopee, I thought. We could finally access two tests each and have another tool in our kit to keep the dreaded virus from sneaking up on us.

As we already had a meeting with Alex's NDIS support coordinator and an appointment with the Boy Wonder on Monday, I vowed to collect these tests early. Right on nine o'clock, I was waiting patiently to show our concession cards to pick up the four tests at the chemist. I believed this would be an easy process. Wrong.

I could see the tests being held whilst they consulted "the record" to tick off our concession cards against the desired boxes. Out of the blue, the pharmacist on duty announced that we had already received five RATs, according to "the record" and were thus ineligible to receive more.

Confusion and frustration took over. I harangued the poor pharmacist about how to fix this issue and have "the record" corrected. She responded that this was a scam and "somebody should be investigating". The only advice she could give was to ring Medicare. I left with no Rapid Antigen Tests, no way of obtaining them and only a vague pathway to follow.

Over the course of the next seven hours, and in between appointments, I rang every agency that was recommended to me. After an hour in the queue, Medicare claimed this issue was nothing to do with them. I was instructed to ring Centrelink. Another wait and no joy. They suggested the Western Australian Health Department. Another dead end. I was directed back to Services Australia, the overarching organisation supposedly administrating Medicare and Centrelink. After more frustration, I rang the Complaints line. At least, one of the staff arranged to set up today's phone call to sort out Michael's Aged Pension transfer. The final operative at the Services Australia Complaints line put me through to the Eastern States. By this stage, half past three had come and gone. The Eastern States had shut up shop for the day.

This final insult precipitated my descent into mental  hell. By the time we arrived home, I was inconsolable and incoherent. Nobody had helped us. Nobody was taking responsibility. The combination of helplessness, anger and insignificance was overwhelming. 

I gradually regained my composure and by this morning, after a long sleep, I was ready to tackle the problem from another angle. I rang the original pharmacy in Banksia Grove. The very helpful intern explained "the record" might be accessed within Project Covid through the Pharmacy Guild of Australia. I rang the Western Australian branch. A breakthrough - the Business Support officer and Pharmacist let the cat out of the bag. Project Covid was an initiative of the Australian Health Department and had been poorly planned and poorly executed. What a surprise...

After ringing the Health Department operator and getting the runaround, I asked to be put through to the Minister's office. Once more, there had been a complete lack of accountability to address my concerns.  And this was where I encountered the Minister's receptionist Milly/Millie.

After explaining the entire sorry tale, she went on the defensive. No, I couldn't talk to the Minister. No, he didn't make phone calls. No, I probably wouldn't receive a response from the Department today or tomorrow. She didn't know when I would be contacted. I promised her I'd be ringing the Minister's office every day until I received an appropriate response. Milly/Millie replied that "I'll be here"!

Now, forgive me for seeming naïve or ignorant, but I would think that if a member of the Australian electorate had to contact the Minister of Health regarding a Health Department RAT concession scam, there would be some understanding and a spring to action. What a joke.

So, Minister Hunt, this is directed to you. You are still Health Minister until the election. I expect some satisfaction, "the record" corrected and our ability to access Rapid Antigen Tests reinstated. Better still, given this fiasco, I would personally ask your department to provide our designated RATs to us. An apology for no pathway to solve this problem and the frustration over ten hours of phone calls would be appreciated. 

And now, I appeal to the NDIS Minister, Linda Reynolds. My lad and Autistic Superstar, Alex Hawes has been a participant of the NDIS for over two years. I am also a participant as his parent. Alex has Congenital Heart Disease (Tricuspid Atresia),  Autism, severe Asthma, Pseudomonas in his left lung, intellectual disability, scoliosis, low muscle tone, anxiety and has suffered from arrhythmias, repeated chest infections, asthma attacks, foot fractures, difficulty in sequencing, difficulty in comprehension and inability to recognise his body temperature.

He has had four Local Area Coordinators (LACs) since October 2019. He has never had a successful Plan. The allocated Plan Managers (they pay the NDIS invoices) were inept and I was never offered Support Co-Ordination until I found out about this service through other parents, rather than the agency itself. Our most recent LAC, Katie-Ann Peart has stated that Alex is too complex for a LAC and not complex enough for an NDIS Planner. That is why Alex requires adequately funded Support Coordination. We were give twenty-four hours over three years in September. Our Support Co-Ordinator had already used nineteen hours in three months when we appealed his latest Plan. She itemised how she would utilise thirty-nine hours per year in our latest review. This allowance has been duly increased to sixteen hours a year by the NDIS, not the requested amount. Give me strength.

The NDIS has also rejected my request for funding reverse cycle airconditioning to keep Alex's home environment stable and safe. Twice. They stated we hadn't tried evaporative airconditioning (which doesn't heat in winter), so we didn't address "value for money" and the failure to complete an Assistive Technology form was considered "insufficient health information". A close friend donated her own funds to supply Alex with the necessary reverse cycle airconditioning. If she ever needs $4000 in a hurry, we do not have any means to repay her. Go figure.

Minister Reynolds, I ask you to fix these inconsistencies. Alex requires funding for adequate Support Co-ordination hours. We need reimbursement for the installation of Alex's reverse cycle airconditioning, which is necessary to his daily functioning. Please do not put us through the agony of more assessments and more justifications. Alex is alive and wants to lead an ordinary life. Perhaps, after the election, the NDIS can be better improved to meet the needs of their client base.

I look forward to your response, Minister Reynolds. 

Minister Hunt, I seek resolution to our RAT issues as soon as possible.

 

When Pride Leads To A Fall...

Major and recurrent depression is my black dog lurking in the shadows. I am sure that there is a genetic element in my condition as madness tends to run in the family. My great grand-father, a talented illustrator was apparently confined to an institution. My grandfather, his son, was told that he had died. He became an alcoholic. My darling Dad was not entirely your standard chap - maybe that's why he remains so dear to me. My grandmother was an enigma. She and my grandfather hated each other but married and had one child, my mother. As a six-year-old, Mum was packed off to boarding school. She was damaged even then and became a walking time bomb, prone to unpredictable explosion. So, the four of us kids grew up in an utterly chaotic household. Dad adored her, so he could never protect us from her rage.

I was a lonely child away from my brothers, a wary teenager and a reliable target for bullies. I stopped telling Mum about these episodes as she had no solutions. She had enough trouble fighting her own demons.

I married young, desperate to be loved and play "happy families". I was first prescribed valium at nineteen years of age. I would regularly take more than the prescribed dose just to silence the harsh judges in my head. I deliberately self-harmed on multiple occasions.

My children were my joy, However, I was a terrible mother, particular to Vanessa, during those awful two years when Chris, Zoe and Melanie all died. The only two mantras that saved us all was that I would never let my children go to bed feeling unloved and I would try to apologise every time I was wrong. These had been my mother's greatest weapons - I was terrified of losing her love and she would never admit if she was mistaken - and I was not going to repeat her behaviour.

I had a brief admission to a psychiatric unit after Chris died and before I became pregnant with my girls. Then, after my marriage breakdown and a disastrous, albeit brief move to Queensland, my mental health fell apart. I spent three weeks as a patient in Perth Clinic. My darling Vanessa drove me there. Then, I had an affair with a married man, a sociopath who left wrecked women in his wake. I took two years to extricate myself from that disaster.

Meeting Michael was one of the most joyous events of my life. He is the most gentle, tolerant, understanding and logical of men. However, even he struggles when I enter a black episode.

Yesterday, I was bombarded with a series of challenges that gradually wore me down to breaking point. Whenever I reach that stage, I become overwhelmed by memories. I hear whole conversations, I remember events in excruciating detail and I swing wildly between rage and despair. I was, once more, consumed by the past. The noise in my head was deafening. I wasn't coping and Michael was having a hard time as well.

Today, I am just exhausted. My body aches. My head is full of concrete. I have climbed out of my well yet again and I am beginning to slowly return to functional status. One of my problems has finally been solved. Michael will transfer to the Age Pension; there should be no disruption to his payments and I will continue to receive Carer Payment and Carer Allowance. I finally received this information and was assisted to complete the online transfer from Sandy at Services Australia Aged Pension team. 

All this hassle was caused by a poor bastard at the call centre who didn't have the information to answer specific questions and didn't offer to find out. I only managed to receive Sandy's help after repeated calls to Centrelink's complaints line. If we had blithely continued, thinking Michael still would receive his Disability Support Pension after 4 March, we would have been sadly disappointed. 

I am edging back towards my normal proactive self. I can take a deep breath and tick off one crisis. I just wish that whenever I feel I'm juggling satisfactorily that all my balls don't collapse without any warning. 

Yesterday...feeling like this...

Led to this...

So, I ended up like this...

We all need to remember this...

And ASK this!

The World Is Filled With Good People...Actually...

 A week since I wrote a post. February continues with relentless heat. Our lives are revolving around staying cool and keeping our garden of pots alive. We have also been staying up later to open Station House to catch any hint of cool, hence our sleep routine is a bit higgledy-piggledy. And my temper has been rather short of late. Sorry, Michael.

Our feline fops have taken to sleeping through the day and becoming active at night. Chop has decided he is a dog, whereas Suey knows he is a god. Chop plays with Stella, adores Stella, harasses Stella. Suey parks himself between our feet whilst we are on the loo and demands attention. Michael gave up reading the paper this morning when Suey sprawled across Saturday's West and nipped Michael for stroking to commence. Stuff the news of the world, Suey's desire for worship was infinitely more important! 

Meanwhile, the canine clowns are almost as listless as us. Walking to the oval has been postponed as we are never up early enough to enjoy the dawn cool and the evenings are too hot. Every now and then, Pip, who is on pain relief for his arthritis, launches forth into a chasing and dodging game with Stella, accompanied by lots of fake growling. Stella could easily outrun Pip, but she enjoys these impromptu  play dates as much as he does. Afterwards, they retire for the duration.

The doom and gloom that is currently considered newsworthy is giving me the pip. COVID 19, the threat of a war in Ukraine, the pathetic efforts of our parliament, the lack of any definitive action on violence and the ineptitude of the NDIS grinds me down. Luckily, this last week had been filled with good, and reminders that random acts of kindness are all around us.

Jan George, multi-talented artist, singer, musician, poet, sculptor, maker and diva has taken me in hand and gives me fabulous clothing unsuited to her. Today, I am in a vibrant pink patterned frock, perfect for this Front-of-House at the East End Gallery, kindly donated by her on Wednesday. The dress washes like a rag, is non-iron and today is its second outing.

Fellow artist Pat Steele, absent mindedly chose some random bras that turned out to be the wrong size, so she promptly asked me if I'd like them. What a woman! Out of four bras, only one didn't fit me, which I donated to a wonderful entity called Fifth Avenue, a frock shop newly opened by Michelle in York. She distributes donations to those who can't afford clothing or undergarments. Some of my readers may remember I had a bra, crop tops and a dress nicked from my clothes line in December. One of Beverley's locals was going to buy some new bras for me, gratefully accepted, which I ordered through Cadd's in Northam. Unfortunately, Cadd's never called me to confirm my over-the-shoulder-bolder-holders had arrived, so I was delighted to accept Pat's generosity.

Ian and Lindy Kay, innovative artists from the Perth Hills and supporters of numerous galleries, previously gave us plinths of various sizes on long term loan. These are marvellous display units as our eyes tend to drawn to the different heights. They had also lent two big cabinets, two impressively large plinths and a glass see-through unit which is ideal to showcase jewellery to Steve and Di for their gallery in Pingelly. After falling in love with a café named Chatterbox in Williams, Steve and Di now intend to run that enterprise with Di's art as their chief creative feature. So, instead of retrieving the loaned items, Lindy offered them to us. Take a bow, Belinda Kay!

Steve delivered these items last Sunday afternoon, enjoyed a drink with us, then set off for home, fifty kilometres back down the Great Southern Highway. Due to Steve's alacrity, I was able to begin the process of cleaning, placing and filling our additional storage straightaway. Needless to say, this exercise turned into a job bigger than Ben-Hur and I only completed another overhaul of the Gallery and Giftshop on Wednesday night. However, we are thrilled with the result, just in time for our Sundowner on Saturday 5 March.

Back in December, we encountered Edward, a canny Egyptian-by-birth, who was searching for local Avon Valley artworks. Edward played his cards very close to his chest and I have needed time to suss out even the most basic of details about him. He explained that he, along with two other blokes Daniel and Dirk, along with Daniel's wife Annette, was leasing the old York Courthouse from the National Trust and hoped to transform it into a centre of stories, art, history and education. We were able to supply him with paintings by Pat Lane, Shirley Gillis and John Kaye, for which he bargained hard, but fairly as he was buying multiple works by each of them.

And blow me down, Edward, Daniel and Dirk have made their dream come true. On Friday, we attended the opening of the Courthouse Galleries, Museum, Gaol and Education Centre on Avon Terrace in York. Their enterprise just blew us away. They have restored the old cells, protecting original drawings. There are information panels everywhere. Art, artifacts and signage both amuses and informs. We were particularly thrilled to view the Avon Room, which houses paintings by our artists, along with a glorious tapestry of York. A wonderful Welcome to Country was performed by several members of the Kickett family. Aboriginal art is displayed hand in hand with all the other works. This is a fantastic achievement and an amazing addition to York and the entire Avon Valley. These blokes mean business. This has not been set up for them. The Courthouse aims to unite us all through art, culture, history and stories. Add this attraction to your must-visit sites in the Avon Valley.

Lastly, I'd like to make special mention of those tirelessly working to make the NDIS a more fair and equitable system. I am thoroughly fed up with the negative opinions aimed at participants - "You people are one of the reasons the NDIS is going broke" - a unsolicited comment made to Michael and me. Conceived by the Labor Party and full of good intentions, hopelessly run by the Liberals, the time has come to shout ENOUGH. 

We have this structure in place, so let's make it work. It's time to fire all the useless bureaucrats, the pencil pushers and poor service providers. The NDIS deserves educated and dedicated staff, including those with lived experience of disability. The National Disability Insurance Scheme's primary focus should be its participants. There needs to be no discussion about clients' expected life spans or their quality of lives unless the participant and their families wish that. We go down that path at our peril, inviting eugenics into the conversation. Yes, I chose to end my dying baby boy's life back in June 1987. However, I would fight for anybody's right to their own self determination. Otherwise, what are we?

Our Autistic Superstar has spent his entire life wanting to be ordinary. He has endured the disappointment of short, dead-end administrative contracts (filing) and multiple tryouts in hospitality venues. His one chance at open employment in an inclusive café was squashed by a political lack of will. I will never forgive that action. Yet, we are still struggling for support from the NDIS. His latest Local Area Coordinator (his fourth in two years) has admitted his needs are too complex for any LAC and he requires an adequate Support Coordination allowance . Yet, our latest request for Support Coordination funding of thirty-nine hours a year (yes, less than one hour a week) was met with a counter offer of sixteen hours a year. Go figure.

Having vented spleen, I would now like to thank, from the bottom of my heart, those who continue to get up, get dressed and get pro-active for people like Alex. In no particular order -

Shannon - District 360 support coordinator

Evan and Kathryn - Your Choice Plan Management

Amanda and Mel - Connect Case Management 

Jeanette - I'm Online Advocacy -

and I look forward to continuing to fight for Alex's best interests with the assistance of this group.

As a result of constructing this post, I am determined to remain hopeful. All these who have been mentioned here are just the tip of the iceberg of those family and friends who Michael and I hold dear and who continue to love and support us.

Until next time...

Fierce February...

Hot, hot, hot...

Chop and Pip...

Chop and Stella

Suey

At the Courthouse Opening...

My supplier of fine clothes, Mizz Jan

Bras galore!

Infinity by bra provider, Pat Steele

Lindy Kay

Ian Kay

Di  Mainwaring

Brynn, Di and Steve's Wonder Dog

Edward and Dirk

Edward and Daniel

The wonderful York Courthouse revitalised -

Let's do this!