Please Read - What Should I Call This Post?

I have been banging around with titles for this post all day. Ones that have jumped into my head have included - does anybody give a stuff/shit/f#*k? So, I am throwing this title out to readers' suggestions who may give a stuff/shit/f#*k. I would be delighted if this post is viewed by more than 10 people. I would be ecstatic if this post actually captured the attention of the mainstream media. I think I am living in Cloud Cuckoo Land, given the amount of interest I hope to receive as opposed to the reality I am anticipating.

This post is all about lack of information sharing, disregard of appropriate and timely responses, appalling decisions and lack of continuity. I could link these issues to the death of Aishwarya Aswath in the Emergency Department of the the Perth Children's Hospital. A little girl died by a litany of failures committed in a state-of-the-art health facility. She may have been beyond saving, but due to her treatment, we will never know. 

We all are filled with outraged horror at this outcome and vow these incidents should never occur again. Except, these incidents do occur, every day. This kind of casual contempt may not actually lead to death, but has major implications for those living with chronic illness and disability.

Let me give a few examples of this behaviour that has caused Alex and me extreme stress over the last week -

• Alex's sleep study report confirming severe obstructive sleep apnoea was not forwarded to his respiratory specialist.
• Alex's MRI results related to his frontal lobe damage have not been forwarded to me, despite Alex and I presenting a document to his GP last year that he gives permission to release all reports to me.
• In fact, none of Alex's recent reports have been e-mailed to me. When I protested to his GP's office, the excuse I was given was "But there are so many reports!" Give me strength.
• The commercial arm of the Sleep Study organisation sent Alex what I would consider a "sales pitch" of CPAP devices and service . Given his difficulties with processing large chucks of written information, he immediately descended into panic.
• No medical professional has attempted to find a connection with all Alex's diagnoses. He has a number of obscure conditions, which in my brief research, appear to have a genetic component. If this is the case, the NDIS needs to recognise Alex's issues as conditions rather than "illnesses" which should alter his funding model. The funding is not the issue. The funding currently has such a narrow scope of delivery that we can't fund the services or devices that Alex requires.
• The NDIS has maintained its persona as the Department of Stealth and Total Obscurity. Documents are routinely lost, responses are non-existent or nonsensical, emails and phone calls are not returned, and service delivery is patchy. In the three and a half years that Alex has been a participant in the NDIS, we have yet to receive a satisfactory plan. 

Here is a current list of Alex's diagnoses as sent to Minister Shorten this afternoon -

• Tricuspid Atresia (a congenital heart defect)

• Asthma

• Pseudomonas infilltration of his lower left lung

• Frontal lobe damage caused by a stroke as an infant, only discovered through MRI last year

• Low muscle tone

• Scoliosis

• Autism

• Difficulties with processing of language, both verbal and written

• Chronic Anxiety

• Keratoconus (a disorder which causes conical corneas and may have a genetic component)

• Severe obstructive sleep apnoea (which may have a genetic component).

   

  I have also repeatedly requested increases to Alex's Support Coordination, with tangible reasoning. Given Alex's level of anxiety, he often requires the assistance of either myself or his Support Coordinator to defuse a potential panic attack. Alex currently has either eight (8) or twelve (12) hours per annum for Support Coordination contact, the conduit between us and the NDIS. Please think about those figures for a minute and consider if a young man with his complex needs has enough Support Coordination. The service provider that manages his Support Coordination has only ever known one case with lower funding. 

  Here is a further excerpt of my letter to Minister Shorten -

   I have been told by a NDIA Local Area Coordinator that Alex is far too complex for a base LAC and this should be reflected in the amount of Support Coordination funding he receives. His previous Support Coordinator Ms Shannon Kirk repeatedly requested more hours to be funded, including dot points to illustrate how thirty-nine (39) hours per year would be utilised for Alex’s needs.

   And this about the NDIA's record of lost documents and failure to respond to legitimate queries -

    I was recently contacted by Jayne Jones, who purported that she was from the NDIA, supposedly checking the effectiveness of Alex’s current plan. She asked me to submit a Carer Impact Statement again. My previous statement, submitted in 2021, was nowhere to be found. She also asked me to resubmit Alex’s MRI reports again, as they were nowhere to be found. I am yet to receive any feedback, including if she received the documents, which I asked in writing that she do.

  Two or so years ago, I repeatedly requested the NDIS fund reverse cycle airconditioning in Alex’s unit, due to multi-factorial issues including inability to recognise his temperature, the serious risk of severe asthma and chest infections if he became too cold, the link between cold and his experience of cardiac arrhythmia, a significant drop in his daily functionality due to cold and his uncertainty over appropriate clothing.

  We were rejected three times and in my opinion, the explanations were totally arbitrary. Fortunately, a benefactor paid for Alex’s airconditioning. We are now in debt to that wonderful person for the sum of $4000.

  We are now contemplating his urgent requirement for a CPAP machine for his severe sleep apnoea. We currently have no idea if the NDIS can fund this device, which is essential for Alex as soon as possible. 

  We are really lucky that Alex has the services of an superb independent support worker on Saturdays. We would like to access more hours for Alex's needs to relieve my ongoing stress, but so far, this has not been possible. We live in hope...

  So, there is the reality of the situation for Alex and I day in, day out. Unlike Aishwarya, Alex is unlikely to die tonight. However, with untreated severe sleep apnoea, and his other life long conditions, I do worry about waking up and discovering he has died because of disjointed services and lack of information sharing.

  So, can anybody out there go in to bat for Alex and me...
  

   This is Alex -