The rollercoaster adventures of parenting three kids, dealing with disability and mental health.

Thursday, 26 February 2015

Speechless

I received a letter today which left me (momentarily) speechless - and then livid!

Here it is.




In June 2014, our service provider put in a request for a new manual wheelchair for BooBoo with EnableNSW. This is kinda important, as a manual wheelchair is her main means of getting around. In the past we have bought her chairs ourselves because, well, dealing with EnableNSW is not my favourite pastime. And we've had the means, so I don't want to take funding away for those who need it more.

As things stand with hubby's business, we cant currently fund another wheelchair. We have spent lots of money on home modifications and equipment (4 wheelchairs, 3 walking frames and one standing frame - and those are just the big items) and we haven't really got an income at the moment. So while there is no doubt BooBoo needs a new chair, I have no option but to request it through EnableNSW.

The chair she currently has was not the best fit from day one. Let's just say her needs and abilities were not interpreted adequately by the service provider (whose expertise lies with clients with quite different needs, but the disability system being what it is, this is our designated service provider).

We adapted the chair where we could. We did some creative re-modelling to make it work. But it meant the chair reached its maximum growth capacity within a year of its arrival, and I knew a new one was needed soon - despite BooBoo's thankfully relatively slow growth.

I knew it would take time, so the OT and I prepared the application in good time. I was also assured that this was a priority two item for her (being her main mobility) and should come relatively quickly. It was approved without too much difficulty Now funds have to be released to the supplier to commence making the chair.

In January, BooBoo started complaining about a sore back. Every day.

We are lucky a kind Paralympian (you know who you are Rosemary) made some further changes that have alleviated the back ache somewhat.  

Our new OT requested EnableNSW to please speed up funding for the chair due to BooBooo's daily back pain. I was told they have two weeks to respond to this request.

And at the end of those two weeks, today, I received this letter.

It tells me nothing whatsoever about wether her chair will be funded sooner and if so, when. 

Instead it insults me telling me I need to have patience because others have equally pressing needs. As if I don't effing know that?!?? The letter even implies that my impatience is unfair towards people waiting for a ventilator. As if I ever would dare to suggest a ventilator would not be more urgent than a wheelchair. In fact, as a priority one item, surely EnableNSW isn't seriously suggesting people have to WAIT for a ventilator do they?!

I was seriously incensed by the letter and rang them straight away to complain about the tone of it. I have since followed up with a written response which requests and actual answer as to when I can expect the chair to be funded and twister my disgust with the tone of the letter.

Because really, I enjoy nothing more than battling bureaucracy (and getting insulted in the process). Sigh.
  

Sunday, 8 February 2015

Virgin

As you might expect, I was not satisfied with Virgin's response to my letter.

I voiced this, and it got picked up by some media. If you want to check it out, the links are here.

Daily Mail

Today

MammaMia

But really, this is not about media. This is about getting aisle wheelchairs on flights so that this never ever happens to someone else. And I will not give up until that has been achieved.

And thus I have made an official complaint to the Human Rights Commission under the Disability Discrimination Act (1992).






This has so far been upheld and the process to resolve this has started. Until this is finished, I won't be making any further comments on this issue. I hope you all understand.

Wednesday, 4 February 2015

Winning

Sometimes, winning is not coming first.

Sometimes, winning is not giving up even when you have no chance.

http://youtu.be/S7Nowc3puyI

Very proud of our daughter.

Thursday, 29 January 2015

Wednesday, 28 January 2015

Holidays












Email to CEO of Virgin Australia

Mr. John Borghetti
CEO Virgin Australia

Dear John

In September 2014, our family went on a much-needed holiday to Fiji. Our oldest son was very sick, and we had had a very difficult year, so my father in law shouted us a holiday – travel and accommodation all booked via Virgin Australia Holidays and Airlines.

It took some time to sort out all practicalities – after all we were travelling with two kids who are wheelchair users – but your staff were friendly and patient, and all got sorted out satisfactory. Until two hours into our flight from Sydney to Nadi, when our oldest son (then 13) needed the toilet.

We were shocked to find that a 4-hour flight with two wheelchair users on board had no aisle chair for me to take him to the toilet. 

If you are interested in the details of our experience, you can read all about it on my blog (www.rollercoasterparenting.blogspot.com.au/2014/10/virgin-australia.html). In a nutshell, this is how, in desperation, I dragged my 50kg sick son to the toilet:



The same occurred on our way home to Sydney. I contacted your customer service team and nothing happened. Only after I wrote about my experience on my blog and it was picked up and re-tweeted by Stella Young did I suddenly get a response, a long telephone call from Matthew Dixon, your Guest Experience Manager. 

I explained to Matthew that I expect all flights to have a foldable aisle chair on board – but the very least on a flight that has wheelchair-using passengers on board. Other companies – such as Qantas – provide this essential service. Matthew assured me that he was working on it, and would get back to me. I offered to do whatever I can to help. He said I would have “24/7 access to him” and promised to get back to me by the 18th of November.

I am still waiting to receive a satisfactory response. I have received two almost identically worded template email (13th December 2014 and 22nd of January 2015) stating “Thank you for your patience. My colleagues and I continue to review this matter and will be in contact in due course”.

I’m sorry, but that’s just not good enough.

I want to know what is actually happening. I want to know WHY you do not have an aisle chair on all flights. Matthew mentioned something about “international safety regulations” but surely they can’t be that complicated that Qantas can comply with them and Virgin Australia cannot? I fail to find anything on the CASA, which outlines safety issues with regards to aisle chairs, in fact, quite the opposite. 

The website states, in its “Guide for Airline Operators: Ensure the aisle chair is available during every flight. (…) Not having the aisle chair available during a flight and refusing to help a passenger to the toilet is a denial of their rights”. (www.casa.gov.au/scripts/nc.dll?WCMS:STANDARS::pc=PC_90328)

If there are other safety regulations Matthew was thinking of, could someone please explain these safety regulations to me? How does Virgin Australia intend to address basic human rights of its disabled passengers with these regulations? 

Furthermore, I would like to know what your policies and procedures are when you get confronted by a customer issue like this. Matthew told me his team was meeting with various air safety specialists. Please can someone explain to me, which meetings are attended, by whom, and what is discussed/proposed there. 

John, my son is 13 years old and became seriously ill in 2014. Within the spate of two months he lost the ability to walk and toilet independently. Can you imagine how embarrassed and mortified he felt?

While I was certainly not happy with the initial issue, I have grown even more frustrated with the responses (or lack of) I have received from Virgin Australia. 

Please can you adequately respond to the initial situation my son found himself in on your planes in September 2014? Can you please inform me, in writing, what Virgin Australia intends to do with regards to on board aisle wheelchairs, and to the questions I have outlined above.

Sincerely Yours

Heike Fabig
[contact details]

Monday, 17 November 2014

Breathing is so overrated

Some days, I just can't believe some of the things I hear.

Listen to this one.

A sweet friend of mine put in a request with NSW disability equipment Provider Enabe for a shower chair for her dear child. This requires a whole ream of paper, to be filled in by a qualified OT working for registered service provider.

The reply came that, yes, the chair was approved. However, the requested harness was denied as the tilt on chair would suffice to keep the child seated just fine. 

So the mother rang and asked the senior advisor to read out loud what OT had written as the reason for needing a harness.

"[Child] needs harness to keep their shoulders back to prevent chin and neck tilting forward which interrupts breathing "

I am pleased to be able to tell you all that my friend had a "fairly serious discussion" and a harness will be provided - and she even avoided the normal 21 day appeal process. 

But if "lack of breathing" is not a decent enough justification, you really gotta wonder what is???!!!! 


(And again. Why do we need qualified OTs to fill in all this paperwork if a bureaucrat overrides their professional advice ?!?!$