This week has been another one that's headed straight to the pool room. I seem to be making a habit of running on empty. Yesterday was another case in point. I spent the morning juggling emails, housework, list writing and preparing to leave for the Big Smoke. Our pensions had come in and were allocated toward some bills. I have secured extensions for others. We are really struggling financially at the moment to keep our heads above water. The cost of fuel has gone through the roof. A trip to Perth and back costs fifty dollars. Supermarket shortages mean that budget shopping has become problematic. If I see an item we need, I buy multiples if possible, as I just don't know whether something like Michael's alkaline water is going to be on the shelves next week.
Michael's pain meds meant a trip to the Northam pharmacy holding the scripts, as we are not permitted to have the repeats at home. I also gained the last two dog logs at our vets that are suitable for Stella and Pip. Even if I could buy cheaper dog food at the supermarket, there is none. I also filled up with fuel. A hundred dollars took Lily's fuel tank from quarter full to full.
Then I set off for a meeting at Paraquad and to take Alex home. The trip took me half an hour longer than expected due to major roadworks. I was exceedingly stressed and apologetic when I arrived to discuss Alex's service agreement with Thinley (pronounced Tinley) an employment support officer with Alinea, who operate Paraquad Industries.
Thinley is becoming one of my Good Guys. We didn't actually tackle the service agreement as we were too busy with other tasks. I discovered Alex has had a pay rise, has sick leave and paid holidays - all good. I asked that Alex have regular breaks at INKA Respite at Lake Clifton. She made notes. Thinley also became aware of Alex's morning routine, involving him waking at 4.30am to get to work by 7am. By tweaking his start time to 7.30am and organising a journey planner for him, Alex will be able to have an hour more sleep on his work days. We discussed his performance and the assistance offered to him 1:1 as well as in group training. She realised that Alex's probable Acquired Brain Injury would certainly cause him cognitive difficulties, which would impact his role as a Café Attendant. She sent me an email today to reiterate her support to Alex. Refreshing.
The same can't be said for agencies such as the NDIA, Centrelink, Telstra, Uniting (Alex's support worker provider) and the federal Health Department. These entities have become so huge that they are extremely difficult to navigate and almost impossible to pinpoint any staff member who knows what they are doing and give us appropriate and timely help. Let me give a few examples of this behaviour.
The National Disability Insurance Scheme has altered (without any warning) the way Alex's transport funding operates. Instead of him receiving a set amount in his bank account each fortnight for use in Ubers and taxis, he now has to pay out of his own money, receive a receipt and claim his transport funding back. Unbelievable...Particularly difficult if he has to use an Uber in an emergency or multiple times on his pension as well as being a ridiculously obtuse system for people with cognitive difficulties.
Centrelink made Michael's transfer to the Age pension so confusing that I needed the assistance of Sandy from the Age pension team to walk me through the process. I only gained Sandy's services due to my repeated calls to the Centrelink Complaints line. She agreed that I had been taken for a "walk up the garden path" and given incorrect advice.
Telstra just continues to make our lives a misery through unreliable mobile and internet coverage. Whilst attempting to plead for an appointment at Neurosciences to discuss Alex's brain trauma, my mobile phone dropped out ten times in Beverley town centre where we live. When I finally gave up and penned an email - with no response as yet - I then tried to ring the Telstra complaints line. The cheery voice informed me that I would wait an hour to speak to a Telstra representative. No call back was offered, so another waste of my time.
Uniting, who change both their name and their staff on a regular basis have failed at their job to support Alex due to sheer lack of communication within the organisation. A service agreement signed by me last April has not been enacted. The staff member who set up that service agreement and promised to keep me informed has been moved elsewhere and did not pass on any information. Alex has had multiple support workers over the last twelve months. His most recent support worker was a pleasant chap, but lacked any initiative. The staff member I spoke to this afternoon only wanted to dissuade me from discontinuing their services and thus their funding from the NDIS. I gave them their two weeks notice in writing.
Finally, the frustration of finding Agent 99 at the Health Department to sort out the issue of obtaining our Rapid Antigen Tests. She was knowledgeable, caring and articulate. Definitely another of my Good Guys. She explained that there had been issues with the programming of the RAT rollout and promised to get to the bottom of my problem. She did indeed ring me back and claimed the issue would go away with the "rollover of the program on 1 March". I was grateful for her compassion and action.
Except, my problem did not go away. Presenting to our local pharmacy on 1 March, the "record" still showed I'd received five Rapid Antigen Tests, when I had received none. Jackie the pharmacist was able to track down the postcode of the chemist that had supposedly dispensed the tests to me on 19 February. A chemist we frequent in Northam.
The penny dropped. I remember that during one of my conversations with Agent 99, she had said that pharmacies has to pay for their stocks in order to be released by the Health Department. This was the same ill-thought scenario as had happened with Alex's transport funding.
Because I had asked the Northam chemist to let me know when they had supplies of the tests, they had pre-ordered and paid for them. Which showed on the "record" that we had received five tests, denying us the choice to get them elsewhere at all until I worked this chain of events out. I had not been contacted about this pre-order and was blindly making a total idiot of myself in the quest to find our concessional RATs from anywhere. The bleeding obvious had been safely hidden.
All of these complex and confusing juggernauts have forgotten whom they are supposed to be serving. Common courtesy, straightforward information and timely assistance is almost entirely absent and been completely lost. When Michael broke his foot in early November, we were referred for some support almost immediately. The process took three months. We have had two occupational therapists visit us to gain the degree of help we require. They have not communicated with each other and we are still waiting for a quote to install some hand rails in our bathroom. Then we will wait to see if the quote is accepted. And then we will wait for the actual installation...
I am so lucky that I actually have other Good Guys to call upon. Shannon, our Support Co-Ordinator works tirelessly for Alex's best interests, OT Mel has performed another Functional Capacity Assessment with Alex and will fill out the dreaded Assistive Technology form, service agreements are relevant and current with all the agencies that assist Alex and medical practitioner Mark has been Alex's doctor for over twenty years. Best of all, Alex's proactive previous support worker Pascal in now an independent service provider and will resume working with Alex on Saturdays. My initial phone call to Pascal included a litany of tasks to work on with Alex. He was calm, personable and assured. I have every faith in Pascal, which is one load off my mind.
Everlasting thanks to all of my current and future Good Guys, who reduce my carer fatigue and anxiety. Perhaps these administrative monsters with their mazes of misdirection could go back to the drawing board and become aware of service once more. I live in hope...
Stay tuned!
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