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Sunday, August 14, 2011

Bureaucracy and the Handicap Zone: Tracey's story

[Denis wanted me to write a piece for the blog about my experience applying for a Mobility Parking Scheme card (MPS) from the Roads and Traffic Authority (RTA). This is more commonly known as a Handicapped parking permit. After some persuasion I decided that I would write something, perhaps not quite what he had in mind though.]

 A MPS card is one of those things that most folk don’t ever think about, except in terms of wishing they could park in that great spot right next to the door of the shopping centre, only to find that it is a handicap zone. That means it is ‘no parking’ unless you can display the magical ‘I’m handicapped’ card on the dashboard of your car.

 After some discussion, we decided last Friday that it might again be time to think about applying for an MPS card. Yes, I said ‘again’ and in order to explain that I’m going to begin this story a bit further back than last week.

 After possibly a record-breaking engagement – eleven years – Denis and I got married on the 4th of July 2010. At that time he was a little unsteady on his feet and prone to an average of three seizures a week but he was doing more or less OK. Within a week his mobility rapidly declined as the swelling in his brain, a by-product of tumour activity, increased significantly.

 Almost overnight he could not get out of a chair by himself or walk around the house without significant assistance. The furniture arrangements for every single room in the house were altered so that a pathway was made, allowing us to navigate all rooms side-by-side. 

That meant quite a bit more furniture shifting than you would first imagine, especially in the bedroom. Den could only get in and out of the bed on his ‘good’ left side. That’s on the far side of the bedroom, so all the furniture other than the bed came out of there. With my help, he could get out of bed and get right around the room to the door.

 To get around the house, Den would hold on to furniture or the wall on one side and I would support him on the other. Very rapidly even that became difficult and so I began pushing him around on his wheeled office chair in the areas where we have polished floorboards, from computer desk to dining table and back. 

In the evenings I would push his office chair to the end of the sanctuary of the wooden floor to where it met the carpet and we would make what felt like a perilous journey into the lounge or the bedroom – both carpeted. The rugs on all the carpeted floors had to be rolled up and stored, as even that slight height difference was a not inconsiderable step up for Denis and a dangerous trip hazard.

 People who came to visit were always amazed at how well he seemed, but they never ever saw him try to move. A couple of friends would have thought differently though, as on a few occasions their visits coincided with a seizure and then they would have to hastily leave. Poor Julie, it really wasn’t your fault at all!

 Then came the seizure that left Denis paralysed for at least an hour. He was in a lounge room chair at the time and getting him into the bedroom to put him to bed that night was almost impossible but somehow we did it. That night I knew I was going to need help.

 We quickly had an electric hospital bed installed, a shower chair, toilet commode, a wheelchair, bed-stick and all manner of equipment including a ‘floatation chair’. Float it did not. It resembled some massive archaic torture chair, or at the very least, the barber’s chair that Sweeney Todd used to despatch his clients. It had settings that allowed a person to sit or recline or lie down in it. 

Unfortunately it was neither electric nor hydraulic, and the person operating it (me) had to rely on sheer brute strength, taking the weight of the chair and the person in it to change the seating positions. By this time, Den’s arm was in a sling too, which also cut down his ability to help me manoeuvre him about.

 It was at this time I got the paperwork to apply for the MPS card.

 We filled out the application and had a lengthy doctor’s appointment so that the necessary medical report could be written up on the application form. Even though we really needed it, that was a far as we got, because something wonderful happened.

 Den was started on steroids which, at the expense of his normal good humour (I now totally understand the expression ‘roid rage’), significantly reduced the swelling in his brain and there was an immediate physical improvement. At about the same time, after months of my pressing the oncologist for it, Denis has his first infusion of Avastin.

 The effect on his condition seemed relatively miraculous. The MRI done at the time showed an amazing reduction in both the active tumour and inflammation, and his mobility was much improved.

 So, I decided to wait to apply for the MPS card until I thought that things might be moving towards needing it again. I have always felt mightily indignant when a seemingly ‘normal’ looking person emerges from a vehicle parked in a Handicap Zone. We didn’t really need it yet so I wouldn’t apply for it yet.

 Fast forward to now.

 For various reasons that I won’t go into here, we feel the time of the MPS card is coming, especially if things move in the direction that they did last year and, frankly, there is no reason for us to think that they won’t. Denis is again holding my arm tightly when we leave the house. I know how much he has to concentrate to walk, to tell his knee and ankle and foot to lift with every single step. Any little distraction that pulls his focus can mean a stumble, and that is quite scary for me. I know how much he weighs (sorry Honey!) and that I am kidding myself that I could save him if he started to fall. A broken bone or worse would be an unthinkable disaster.

 So, along with moving pot plants away from the entrance to the veranda and shifting furniture which has again crept into the pathway of potential paramedics (the last thing I want to be doing in an emergency is shifting the furniture) I decided the day of the Mobility Parking Scheme had come.

 As I have already said, we had previously filled out all the paper work, including the full medical report. I could see that they had a section where Denis signs it and then I could sign it as his Representative. Armed with the forms, the Medical Report and my Power of Attorney I went into the RTA and took a number.

 I waited half an hour.

 Finally my turn.

 I presented the forms at the counter.


 “Is Denis here with you?” they asked.


 “Why not?”

 “Well, he has a terminal brain tumour and cannot function properly on one whole side of his body, which is why we need the parking permit, but as you can see he has signed your form allowing me to be his Representative, and I also brought my Power of Attorney.”

 “Oh, yes, that’s fine....but he’ll need to come in himself”

 “What? Why???”

 “We’ll need to take his photo to put it on the permit”

 “What? But what if that’s really, really difficult for someone???”

 Now, at this point in the story it is worth thinking about why someone would want a Mobility Parking Scheme permit. In fact, I’ll quote the criteria on the form itself:
 To be eligible for a MPS card, a person must be unable to walk because of permanent or temporary loss of the use of one or both legs or other permanent medical or physical condition, or whose physical condition is detrimentally affected as a result of walking 100 metres, or who requires the use of crutches, a walking frame, callipers, scooter, wheelchair, or other similar mobility aid.
 After a lengthy silence, computer consultation and the printing out of more documents, I was finally provided with an alternative.

 In a few very special circumstances, a MPS card can be issued without a photo. You just need to write a letter and send it off to an address in Sydney, but you’ll also need a letter from your doctor, and then if the exemption is granted you’ll just need to....

 So, it seems to me that the time to apply for a special parking permit on the grounds of your mobility impairment is before your mobility is impaired!

 Now I wonder why we waited to apply. We could have been swanning in and out of handicap zones for ages, just like those people I mentioned earlier, who don’t look handicapped or like they really need to park there. Maybe they are the smart ones, ahead of the game.

 I really can’t help wondering how people who are alone, dealing with ill health and/or mobility issues contend with the paper-driven bureaucracy that must be navigated before they are eligible for any sort of concession, benefit or assistance.


  1. What worries me are the people who don't have a Tracey or a Julie to battle the bureaucrazy. When Carl's daughter returned from Canada with fullblown pyschosis, it was my job to get her onto a disability pension. Carl was working. It was so long ago that I've forgotten most of it except the point at which both Carey and I were in tears in the social worker's office. A Catch-22 nightmare had to be navigated before she would be given a pension and he told Carey, who was incredibly fragile, heavily medicated, and not with it, that, despite being an Australian citizen born in Australia, she probably wouldn't qualify because she'd been overseas. How on earth do some people get a qualification in social work?

    I remember making some sort of tearful, angry speech at that point, and he ticked the right boxes.

  2. Joan: you've hit what is the key for me. It wasn't even about my case, really. We'll get there. It's really about those who don't have a Tracey or a Julie. Those people can't fight bureaucrazy (good term!) because they are used to respecting authority or they simply don't have the strength or the nous.

    Another case in point was Centrelink, on another matter, where an apparently knowledgeable minion gave Tracey completely the wrong info on something that made thousands of $$$ difference. Unsatisfied, Tracey checked with Canberra on that and was told the correct story (helpfully too.) She wasn't treated like an idiot. How many times had that pompous 'authority' here told other people the same thing, made their lives a misery and cost them dearly?

    I understand the need to ensure the right people get Handicapped Parking stickers, and not lazy contemptible fraudsters. BUT their way was to increase doctors' paperwork and waste their time when a simple call to the doctor would verify circumstances. These people haven't made it out of the quill and inkwell stage.

    Nor do I blame the person on the front desk. They're just doing what they're told. There’s a level of bureaucrazy above that which is to blame, but one you never get to pin down.

    I am flabbergasted by the 'social worker's' ignorance in your case. Yet another example of 'authority' that such figures take upon themselves and may wreck someone's life.

    Gotta stop this. I'm getting twitchy just thinking about it and that ain't good.

    Zoe, you said it in two words. I have much to learn from you!

  3. It is becoming very difficult to get the RIGHT information about anything...I rang our 'help desk' (pause to laugh hysterically) to find out if there was a simple way I could run a defrag on all of our school desktops (they were in need of some help poor old, overworked things) only to be asked by my helpful assistant, “What’s a defrag?”
    Part of the problem is that we have a lot of overworked, undertrained people, with no ability to think/or make decisions for themselves (not because they lack the ability, well sometimes, but because the system stops them).
    Every time I seek assistance on something I am left wondering if I have the ‘real’ information….
    Crazy that this situation exists in our most precious parts of society - the parts that are meant to help people in need. The computers will continue to run, all but slowly, but people with needs, need help - the right help. First time. Every time. We should be able to get that right....shouldn't we??


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