What is it about?

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

Sunday, 26 August 2007

Shame on us all

I could rant and rave about the abysmal state of disability services in NSW. But you don't want to hear me do that, and in any case, here is a story that illustrates exactly what I mean. It appeared in the "essential" section of the Sydney Morning Herald on August the 23rd. I read it earlier this week, and it got me so angry, I had to read it out to Hubby - and have to share it here.
It's an uplifting story of a young woman named Ame Barnbrook with a passion for sailing She started the sport at the ripe old age of seven, and now the nineteen year old is competing in an important qualifying regatta in New York, one she needs to do well in to earn a place in the 2008 Paralympics in Beijing.
Ame was born with a rare condition (called phocoamelia) in which limbs do not develop fully. She has no arms and only part of one lower leg, a foot and three toes, which she uses for writing, picking up food, etc.. This hasn't stopped Ame to live a full life, living on a farm in rural NSW where her family runs Clark Bay Cottages accessible holiday accommodation, plays the trumpet ,and studies for a creative arts degree at Wollongong University.

The girl is clearly a star, she was awarded the 2000 Australian Sports Medal for her contribution to sailing and was a torchbearer for the Sydney Olympics. But the one issue that causes her most difficulty is, you guessed it, her independence, thanks to the dismal state of disability services.

Last year she got her first ever wheelchair funded by the government. She must have had one before, surely, but either her folks forked out the money for that, or a charity donated it to her. That does not seem right to me. No one in their right mind (not even PADP) can think she wouldn't need a decent set of wheels to get around. But that is not the worst of it.

At uni, she lives with three other students and gets 34 hours a week of government support to help her with daily tasks such as personal care, dressing, cooking, etc. She needs to pay if she needs extra visits, so she's been drinking less to reduce the number of toilet visits she needs. As her body doesn't have the extra skin on her arms and legs to cool off, this means she runs a risk of overheating and falling ill, as happened in her first few weeks at university.

She's had about 20 different carers in 13 weeks – how this is meant to work is a mystery to me. Surely a couple of carers dedicated to her is more efficient?. Her morning routine takes a while and involved some understanding of her condition – her skin cracks easily from sweating, so carers need to be careful and gentle.

In her second week at uni, Ame's casual carer failed to turn up, leaving Ame stranded in her bed until her father found her! Can you believe that!

Oh, and by the way, Ame would love her own (modified) car so her parents don't have to drive her around all the time. But she can't afford one – and there are no schemes available to help cover vehicle modifications. Too bad, eh?

This young woman should get all the help and equipment she needs to live her life to the full. She should not have to limit her drinks because she can't afford another toilet break. She should have dedicated carers who build up a bit of a rapport with her, get to know her needs and are able to help her more efficiently and effectively. She should be able to save up money for a car, and have it modified with government help.

She is representing her country in her sports, and her country is letting her down.
Our politicians tell us we've never been better of than now. That may be so, we certainly have plenty of material wealth compared to people in other countries and times. Yet as a society, we seem to care more about our flat screen TVs and our Blackberries than the needs of others. Dunno, but I think we may have our priorities wrong here. I read about Ame and the struggles so many parents have for decent equipment and services - including (respite) care for their kids with CP - and I feel ashamed for my country.
[Please consider helping Sailability or the Australian Paralympic Committee - or sponsor Ame's paralympic campaign - call 0412 459 845 if you can help]

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