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The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Thursday, 9 June 2011

An email i sent today to the CEO of my service provider

Dear Rob,

On 11 January 2011 I ran Pathways [the intake service] to put BooBoo on the OT wait list as she is out-growing her power chair.

Today (9 June 2011) I rang Pathways again to find out where we are at, and if there is any chance we can progress this issue. After nearly 6 months now, the chair is now on its maximum settings and unfortunately BooBoo is just not responding to my requests to stop growing.

I was told by Maria from Pathways that she could see our application on her computer (thank heavens!), and she will forward it to the committee again to see where BooBoo is at. She told me that she could give me no further information. She could not tell me when this committee meets or if they could progress our request in any way.

I know exactly which power chair I want for BooBoo (the next size up from her current one, simple really). Writing an application to Enable [the government agency that provides disability equipment] should be a fairly straightforward issue – but in reality, I know we need to trial some other chairs to satisfy Enable’s bureaucratic paper-hunger. From experience, that will take some months of careful coordination between BooBoo, her school, her OT and the one and only supplier of her chosen brand of chair (Permobil). Accounting for some forgotten paperwork and intricate details that no doubt will need to be produced, we will be nearing Christmas by the time the application reaches Enable. Once there it will sit on a desk for some more months before it is even looked at, and then filed in the “expensive items” pile, which moves at half the normal speed – and that is impressively slowly as you probably know. At this rate, I fear she will get her P plates before her new powerchair.

I understand you cannot control Enable (such superhuman feat would possibly earn you a Nobel Prize from a number of mothers I know). But surely it is not too much to ask to be able to make an appointment to put a wheelchair application in for a five year old child within a 6 months timeframe!? I’m not even asking for therapy sessions, just one meeting to get the process going.

What am I to do when she outgrows her chair in a few months time? Take away her mobility? Or come and clean your offices to earn enough money to buy one myself?

We have been your clients for nearly ten years now, and I am still as frustrated as ever with the system and the endless waiting to get appointments.

Please Rob, I know you are a busy man with much on your plate.

But can you for once and for all sort out Pathways and the referral/waiting list system please.

Frustratedly Yours,

Heike Fabig


9 comments:

Jeni P said...

I feel your pain :(
I sincerely hope they provide funding before BooBoo is unable to use her current power chair

roy said...

Go Heike!

Glee said...

that comment from Roy above is actually from me. I didn't realise that my friend had logged in while he was here.

Glee

Susan, Mum to Molly said...

Seriously, how fecking useless is CPA's Pathways?

I have never had a formal 'answer' from them about any referrals I have made. I consider Pathways to be a Black Hole.

Recently I was told to re-refer M by our local therapy team, as her service plan was coming to an end...

I tried in vain to find the phone number for Pathways, mainly via their website, but also on their letterhead. It was NOWHERE to be found.

In the end I had to call the local team to get the Pathways number. WTF??? Talk about being an available, accessible intake service.

Then I called the Pathways number and got through to an automated system which led me to an answering machine (despite being during their own stated open hours).

So I duly left a message, but NEVER received a call back. After over a week I called again, and miraculously got through to a human - who made no apology for the lack of return call.

Seriously, could their "service" be any worse?? Lucky I'm an old & jaded but persistent mother and not a first-time caller...

Tara said...

Heike - how much do you need for a new chair? How much do these things cost?

Heike said...

Dunno Tara. Won't know until I get an appointment and get the process started. Her current one costs $17,000. My father-in-law paid for it as he was incensed by the long wait...

bluffska said...

I hope Rob works on your request and the system, the impact on individuals and families this inaction has is immeasurable, families shouldn't have to mortgage their futures but out of love there's no other option when the systems in place fails! 6 months is a reasonable timeframe from application to recieving goods, that's enough time to process paperwork, assess clients, trial equipment and clear funds, I'm staying tuned for Robs response :-)

Heike said...

Got a call from Rob two hours after i sent of my missive! He agreed this was unacceptable and profusely apologised. He told me the OT would call me in the morning, and she did indeed (she is lovely, by the way, and very helpful, this has nothing to do with her). We have an appointment for Monday week! It should not be that way eh. I have not finished with this, the system remains crazy and needs fixing...

bluffska said...

Amazing, you obviously have the right approach! Stick with it Heike, Boo will need to go through the same process every few years as she grows, Huds is in an adult size wheelchair frame now at 13 so hopefully he just has the seating system to change as he grows, anyway glad the black hole can be quite shallow with your approach, hope it's the same for everyone :-)