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.
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