A magic pudding for aged care funding

Originally posted to Posterous on 24 April 2012

Letter published in Crikey.com.au Daily News today: 

Melissa Madsen writes: Re. "Aged care: treating the cause and consequences of bad price signals" (yesterday, item 1). There might not be a magic pudding for aged care funding, but the Commonwealth government could make the pudding go a lot further by addressing significant inefficiencies in the aged care and disability sectors.

I am an adult wheelchair user who receives state government-funded support services and equipment. My father spent several months in 2010 and 2011 trying to negotiate high-level in-home aged care support for my mother.

You cannot escape the conclusion that decades of under-investment and perverse incentives have left the aged care and disability sectors fundamentally broken. Both appear to operate with administrative systems that are barely functional at best, non-existent IT systems, with a very high reliance on manual processing, high overheads and limited accountability for where the money goes as a result.

For example, the state government does not know how many wheelchairs I have (despite their rules that I can keep only one) and sends me surveys periodically so I can tell them. Standard cushions designed to prevent pressure sores can be bought online and delivered from the US at roughly half what it costs to buy locally, yet government agencies buy locally. What price signal does this send to local suppliers?

The scarcity of resources and the inability of consumers to choose service providers mean that any service at any cost has been good enough. But with increased funding there must also be greater accountability for how our aged care and disability funds are spent.

Wheelchair exercise and a quest for improved fitness

Originally posted to Posterous on 19 February 2012

In the second half of 2010, my GP put me on medication for hypertension (high blood pressure). My blood pressure was so high that my GP thought her sphygmomanometer was broken. Luckily the medication worked, and had the added benefit of getting rid of most of my headaches. The thought that untreated high blood pressure might have caused kidney damage - the jury is still out on this one - was pretty scary, and was motivation to make some lifestyle changes.

I decided to cease working lots of extra hours at home in the evenings and on weekends, to try eating better, and most importantly, to get some exercise. Ideally, I'd like to lose some weight, but that's not my primary aim of exercising. I started out by getting a small trampoline. This was somewhat successful, but it was too easy to find reasons not to use it after work - too hot, too cold, too tired to put exercise clothes on.

I needed a form of exercise that did not require going anywhere special or wearing anything special, and that would not rely on good weather.  I had in my mind the rollers used by cyclists for indoor training, and was thinking of setting up a pair of rollers to use for my wheelchair, until I came across the Mclain Wheelchair Training Rollers on the internet. These are rollers designed for use by wheelchair users, and not just racing wheelchair users.  I could not find these for sale anywhere in Australia - typical! - but found them for sale online at Bike-on.com (http://bike-on.com/product/mclain-mclain-wheelchair-training-rollers-1465.htm) and SportAid (http://www.sportaid.com/mclain-wheelchair-training-rollers.html), both for a similar price.  Freight to Australia increased the cost by 50%, so it was not a cheap purchase. But I save on gym membership, and I exercise in my pyjamas, so I'm saving on exercise outfits as well.  

I am managing to do 30 minutes 'on the rollers' roughly three nights a week.  It helps that we have an iMac set up as an internet TV in the bedroom, so I can watch TV as I exercise. I find that not only has my overall strength and stamina increased, but 30 minutes exercise after coming home from work is an excellent mood-improver, as it helps to manage stress.  Here's a video of me 'on the rollers' shortly after I bought them last year (with clothes on):

Accessible camping - Part 1

Originally posted to Posterous on 18 February 2012

Until recently, I would have said that I wasn't the camping type.  Sure I'd gone camping with my family as a kid, and on school camping trips, but that was all behind me.  My partner was of a different mind, and tried hard for sometime to persuade me of the joys of camping.  Our first camping trip was a rainy, cold and windy long weekend in a caravan park at Clare (http://www.clarecaravanpark.com.au/sa/clare_valley/clare).  We froze and spent most of the night waiting for (1) a tree branch to fall through the roof of our tent, or (2) the tent to be washed away by rain, and (3) the party animals in the camp kitchen next to our tent to stop drinking and go to bed.

I wasn't a convert immediately.  Indeed, I wasn't a convert until we camped at Robe in a caravan park (http://www.robeseavu.com) that has beach frontage, and we woke up to the sound of waves breaking on the beach below.  It was so calming and relaxing.  being able to take our dog with us was an extra bonus, and he loves camping.  We have since had numerous weekends away - Robe remains a favourite for the excellent camping facilities and great eating opportunities in town - as well as two camping trips to Tasmania, the most recent of which was in December 2011.

So how do we make camping accessible for a wheelchair user? 'Accessible' in this context means manageable for a reasonably active wheelchair user with an able-bodied companion.  

  1. Camping sites with wheelchair accessible toilet and shower facilities.  Lots of caravan parks and national parks have accessible toilet and shower facilities, and because these are common facilities, you don't need to make a special booking to make sue that you can access these.
  2. A tent that can be put up by one person on his/her own.  For us, this meant a Black Wolf Turbo Lite FS 300 tent (http://www.blackwolf.com.au).  This tent has the frames and poles built into the fabric, and can be put up by one person easily.  Its footprint is 3 metres by 3 metres, so there's plenty of living room inside.  The only drawback is that the tent is relatively bulky and heavy.  Other options for tents that can be put up by one person are offered by Oz Tent (http://au.oztent.com).
  3. Folding beds. Folding camp beds avoid the need to transfer out of my chair onto the ground and back again.  Our folding camp beds are not quite normal bed height, but are certainly a manageable transfer.  Having folding camp beds also gives you storage space underneath the beds in the tent for bags and other stuff that accumulate in a tent when camping.  We use a cheap boogie board across the corner of the bed to provide a nice, solid, stable platform for transferring from the bed back into my chair. 
  4. 99c plastic bucket.  OK ... I'll admit it.  I like camping, but I don't like wandering about in the middle of the night to go to the toilet.  A plastic bucket under the bed (the cheaper, the better) solves a lot of problems.

What else make camping work? A good sense of humour, ability to live with dirt and some extra cash to buy take-aways or go out to eat, when you need a break from cooking.

Work travel and disability. Or how to create your own accessible bathroom facilities.

Originally posted to Posterous on 16 October 2011

My current employment requires me to travel interstate a couple of times a year.  I used to really enjoy this, and look forward to it, but now I no longer enjoy it.  In fact, I dread it.  I have nightmares for a couple of weeks leading up to it - dreams of falling on hard surfaces and hurting myself, or getting tangled in cords.  I'm still a largely self-reliant person with a disability, but getting older means that managing my personal care needs in an unfamiliar environment, AND trying to work a full day as well, is really, really hard.

Last week, I travelled to Perth with my manager for a two-day meeting at Curtin University.  We had booked the Pan Pacific in Perth as it was the only hotel in Perth that appeared to have a wheelchair accessible room available.  When we arrived, however, the front desk advised that a wheelchair accessible room had not been reserved and one was not available for the first night.  Needless to say that I was more than a little grumpy and upset, arriving after a early start, a day at work and a long flight from Adelaide.  I'm pretty sure my grumpiness was more than obvious, especially when I angrily suggested to the front desk manager that he should not charge us for a non-accessible room (he declined to take up my suggestion).  My grumpiness wasn't helped by the fact that the front desk staff insisted on talking to my manager about my room (we had separate rooms), and even when reminded to talk directly to me, I could not hear them especially well because of the height of the front desk and the noise of the piano player in the nearby bar.  Anyhow, even I am realistic enough to know that wheelchair accessible rooms cannot be produced out of thin air.  So I went to the non-accessible club room.  

The room itself was lovely - very spacious and well laid out, and it could have very easily been made accessible with the following: a ramp bevelled into the one inch step into the bathroom; a different style of sink with room underneath; a higher toilet with a folding, wall mounted hand rail; a folding seat in the shower (already a large, roll in shower).  The room already had accessible light switches, a bed at a good height, reachable air conditioning controls, power points in easy reach, and plenty of room to move about.  Once in the room, the attitude of staff seem to soften a little - I was offered room service as compensation for not having an accessible room, and a fruit platter was brought up to me.  This was lovely, but what I REALLY needed was an accessible bathroom with a handrail next to the toilet and a sink that I could get my knees under.  I sat and stared at the toilet for ages, trying to get up the courage to try a transfer onto the loo, using the granite/marble vanity unit as a substitute handrail.  Once upon a time, I would have done it without a second thought.  With my partner, I might have done it.  But on my own, all I could think of was how hard the surfaces would be on my head, should I fall.  I bottled.  I lost my nerve.  I needed an alternative - and soon.

So I turned back the bed covers, and I took one of the big, fluffy, hotel towels and laid it across the bed, draping it over the edge.  I transferred into the bed.  Then I perched the room's solid, plastic rubbish bin on top on my wheelchair's footplates, and wedged it between the bedside table and against the edge of the bed.  Can you guess what happened next?  Yes, I peed in the rubbish bin.  Too much information?  Well, I'm sorry, BUT WHAT DID YOU THINK I WAS GOING TO DO IN A NON-ACCESSIBLE ROOM?  Hold it in for 12 hours?  I don't ask for a wheelchair accessible room to be difficult; I actually need a handrail next to the toilet to be able to transfer safely.  In the morning, I emptied the bin into the loo, without spilling pee all over the place, and rinsed the bin out.  As I couldn't use the shower, bath or sink to wash, I filled the bin with warm water and sat the bin on my lap against the vanity unit as a makeshift basin, and washed my hair and myself over the bin.  It wasn't ideal by any stretch of the imagination, but I felt sufficiently decent to be able to go to the work meeting, which was the whole point of the trip.  

When I returned to the hotel after work, I was able to move to a smaller wheelchair accessible room.  The front desk staff had listened to tapes of the original booking and confirmed that a wheelchair accessible room had been requested, and availability had been confirmed, but the wheelchair accessible room request had not been recorded.  Staff were exceedingly apologetic from this point onwards, offering dinner or breakfast on the house, where they had been somewhat defensive the previous night.  (Although this change in attitude might have had something to do with the snarky tweet I sent the previous night.)  The wheelchair accessible room had a handrail next to the toilet and a sink that I could get my knees under, but the air conditioning controls were out of reach, and the bathroom was too small to be able to close the concertina door with my wheelchair next to the toilet, so that the door had to stay open.  Unfortunately, this meant having to look at my reflection in the mirrored wardrobe opposite the bathroom whilst sitting on the toilet.  But at least I could use the toilet!

I'm more than a little proud of my ingenuity in a tricky situation on this occasion.  But I'm getting really worn down by the sheer difficulty of work travel.  It's not just the physical exertion of personal care in unfamiliar locations; it's the difficulty of managing Qantas staff and their assumptions that my manager is also my personal care attendant; it's not getting to eat in meeting breaks because either the food is too hard to manage or there isn't enough time to eat and also go to the loo; it's being really tired and taking days to recover.  

I am a crip with a full-time, permanent job, and a decent salary.  I know that makes me one of the really, really lucky ones, and angst about work travel is a luxury that many don't have.  Whilst writing this post this afternoon, Graeme Innes, Australia's Disability Discrimination Commissioner, has tweeted that Qantas could not manage to get him and his guide dog onto an early flight, despite seats being available.  It helps to know that I'm not the only person with a disability who has a few problems with work travel.

Finally I am a real lesbian ...

Originally posted to Posterous on 27 August 2011


Leather seats, 2.5l engine with sports automatic transmission, car seat protector for the back seat so our dog can ride in comfort without damaging the seats, an after-market iPod connector hard-wired to the FM radio that charges devices as you drive - iSimple Tranzit (http://isimplesolutions.com), hand controls transferred from my old car by Les Brazier Special Vehicles (http://www.lesbrazier.com.au).

I looked around at fourth generation Subaru Outbacks for a while, there were plenty of 2007 cars in car dealers around Adelaide, but I was attracted to this one because it had only travelled 40,000 kilometres.  When I originally saw it, it was listed for sale at $29,990, but it sat unsold for a few weeks, and was reduced in price to $26,660.  One Saturday in July, I arranged for my brother-in-law to do a test drive, and I arranged to buy it the same day, after negotiating a good trade-in price for my 2006 Ford Falcon ute.

It's nerve-wracking buying a car that you can't test drive yourself, especially going from a six-cylinder engine to a four-cylinder one.  But I have absolutely no regrets.  The Subaru Outback is beautiful to drive - light steering, plenty of zip, and an automatic gearbox that is completely responsive.  It's nice having my wheelchair back inside the car undercover, although our dog sheds so much hair that having him in the car is akin to driving in a snow dome being shaken vigorously.  I definitely notice that I need to shop around for fuel more, having gone from an LPG-only engine at around 60-65 cents per litre to an unleaded petrol engine at $1.30 to $1.45 per litre, but my weekly spend on fuel has not increased dramatically, given that fuel consumption is lower.

Being able to plug in an iPod, iPhone or iPad to the car stereo is not new for me - I had 3.5mm auxiliary inputs in both of my previous cars - but I have discovered Tune In, an internet radio app (http://tunein.com) and have started enjoying international radio in my car.  New Zealand classical, French nostalgia, soul, blues, country and gospel from the US.  Great stuff.

So how does owning a Subaru make me a real lesbian?  It's an old stereotype that lesbians drive Subarus, and that Subarus are lesbian cars, but like most stereotypes, it's not entirely inaccurate.  (Hint try googling 'lesbian Subaru' if you don't believe me.)  There was at least one other lesbian couple looking at Subarus on the day we bought ours.  And Subaru in the United States did run a series of commercials with subtle and not-so-subtle lesbian and gay themes.  The clincher though for me is not the number of lesbians I know who drive Subarus of one persuasion or another, nor the gay-themed ads, nor the abundance of women-friendly Subaru dealers.  It's the dog commercials.  Commercials for Subaru featuring two dogs driving a Subaru.  (See http://www.subaru.com/dogs and http://www.youtube.com/Subaru.)  My favourite can be found at .  If that doesn't say lesbian car ...