May has not been a particularly quiet or restful month. There have been notable exceptions, of course. On the afternoon of Friday 14th, I marooned Michael at home, hopped into Lily and took off for the wilds of Pinjarra. I was reunited with nearly twenty wonderful women, some of whom I hadn't clapped eyes upon for nearly ten years. We spent over forty fabulous hours together, which was definitely well worth the effort of actually getting away. And Michael ran the East End Gallery so efficiently that I intend to return for another retreat in November.
I did have an important purpose for this adventure. Alex's smooth transition of his disability funding into the NDIS (National Disability Insurance Scheme) has hit a snag. Due to the expansion of his lung condition, which involves a productive cough and trialling some new therapies, he is in need of a reverse cycle airconditioner in order to keep an even temperature in his unit and hopefully reduce his asthma symptoms.
So, I set out to divert some of Alex's funding for this purpose. That's when the sticky brown stuff hit the fan. Any payment of his funding must be linked to his daily functionality. The NDIA (National Disability Insurance Agency) argues that Alex's need for an airconditioner is a health matter, which they don't fund. I have responded that Alex's daily functioning would be up Shit Creek if he doesn't have access to stable temperatures in his unit. Thus, we are currently engaged in a groundhog day of stalemate as each of us attempts to refute the other's reasoning.
At the retreat, I picked the superior brains of those fabulous women who had actually made sense of the NDIS and made the scheme work for them. I admitted that I really had no clue of the machinations of the NDIS, which was why I'd ended up in such a pickle.
On a steep learning curve last weekend and subsequently, I have understood that reports from highly qualified health and para-health professionals are the way to move forward. I have only been Alex's mother - what the hell would I know, given my testimony could not be taken seriously, even though I'd parented him for the last thirty years. I was not an independent professional paid to taken observations and record the findings.
Which is where the NDIA's logic is all wrong. They are determined to keep us money-grabbing families from selfishly requesting funding to make our lives and those we support a tad easier. The NDIA would have us believe that if they agree to all our demands, the country would go bankrupt and all disabled people would be swimming in unnecessary luxury. They forget the overwhelmingly important point - the world is not a level playing field and people with disabilities are at a disadvantage from the beginning.
My son has a congenital heart defect that can't be "cured", asthma that has to be controlled by medication, a still unknown ongoing inflammation of some sort in his lungs, low right-sided muscle tone that I believe was caused by a stroke during one of his surgeries, heart arrhythmias that mimic a heart attack, ongoing issues with his ear canals and susceptibility to upper respiratory and chest infections. Just to make his life really special, he struggles with language and has an intellectual deficit.
So, no, I don't want Alex to have an unfair advantage. All I want for him, at present, is the means to keep the temperature of his unit stable to help prevent his asthma from being triggered, which heightens his risk of developing an infection of his airways. Which sure as shit cramps his style, his ability to work as a café attendant and substantially affects his daily functionality.
I have also discovered, with Mizz Stacey Marasco's able assistance, that Alex is meant to have a yearly functional capacity assessment as part of his core funding. To my knowledge, that has not happened for at least the last two years and was not brought to my attention by the Local Area Coordinator, who wrote his NDIS plan.
Needless to say, I have asked for a change of Local Area Coordinator...
I am now attempting to find an Occupational Therapist in Perth not run off their feet who can perform a functional capacity assessment as soon as possible. I might as well be asking for the winning Lotto numbers. Wish me luck...
And we need a specialist letter from Doctor Scott Claxton, detailing how Alex's lungs affect his daily functionality. Whew...
At least I have begun to get my head around how the NDIS operates. And knowledge equals power.
Many thanks to Stacey, Ailsa, Laura, Sue and everybody else who put up with my whinging, snoring and gasbagging well into the evenings.
That was my first venture into my past to bring me up to date with the present and future. As I drove home via some very picturesque villages, I was reminded of my first trip away with Michael in 2009. Eager to impress me, we visited such beauty spots as Boddington Alumina Mine, Griffin Coal and Worsley Refinery as part of a routine Sales and Services trip. In spite of the unpleasantness of some pretty wiffy places, I was fascinated by Michael's energy, problem solving and logic as applied to his work. Which he practised up until the day he was forced to retire.
What of the rest of May? I was inundated with medical appointments, including my own. First I discovered that I was a most uninteresting middle-aged fat woman with no distinguishing heart abnormalities at all. Bron and Immy met us at Joondalup whilst with Alex to deliver my new computer with all data downloaded. Then to Scott Claxton with Alex, which was a most thorough appointment. Latest was Michael's rendezvous with the Boy Wonder. Due to the ongoing dissatisfaction with the last operation, Michael is going back under the knife for the third time on Monday for his troublesome ulna and wrist. All he wants is to be able to continue with his artwork for another ten years.
And today is our anniversary. We met, twelve years ago, at the Whiteman Park dog exercise area to see if our dogs could get along. They did and so did we. The rest is history. Ten years ago, we were lucky enough to move to Heavenly Beverley. And now, we inhabit Station House with all our possessions and treasures around us.
I am currently just looking towards Monday and Michael's next surgery. We wish for his speedy recovery. We return with Alex to see Scott Claxton earlyish in June. I shall continue to engage with the NDIA until I procure the funding for Alex's airconditioner. And then we are looking forward to our next trip northwards in July to leave the cold weather behind for about six weeks.
This update has been almost two weeks inside my head. That will do for now, I think.
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