Prove it or lose it

On occasion things annoy me. Mostly they are stupid things, or things which shouldn’t be stupid but are. Sometimes this country has stupid people in charge.  Take this for example: the government bombard us with messages about making sure you try to work if you can, rightly so, and only claiming the benefits you are entitled to (if you are entitled you must complete the Crystal Maze blindfolded to work this out), and if you’re not eligible you may appeal if you think the decision was wrong, only to be told ‘no’ again. Or maybe you appeal and this time it’s a ‘yes’, and they were just testing the water the first time to see if you’ll roll over and say ‘oh okay, I’m really in a bad way here but it’s no biggy, I’ll just suffer in silence’. Then the government will produce statistics detailing the budget deficits and figures showing of the amounts of people wrongfully and fraudulently claiming benefits or disability funding, not working and being a ‘drain on the system’, when they are quite capable of giving back to society with their skills.

Having spent 30 years being in receipt of one kind of funding or another due to my disability (aside from my newborn months and the first couple of years where I was just a fat unemployed baby, although ironically I did learn to walk at 9 months of age -that’s funny isn’t it!) I find this utterly astounding. How the hell does ‘Jason’ at number 49 with a so-called paralysed leg manage to get a blue badge for disabled parking, (which is renewed every three years and is only awarded automatically to people who are entitled to the Higher Rate Mobility Component of Disability Living Allowance), repeatedly have his application accepted, then one year gets caught doing sponsored Morris Dancing with his pub friends at the local summer fayre, showing just how skilled he is on two legs. How did he ever provide evidence for his ‘disability’ in the first place? It’s a complicated task on its own.

In the paperwork from my local council about renewing your blue badge which I have recently had the pleasure of undertaking, it says that they only issue blue badges for permanent disabilities or illnesses. Permanent. Not temporary. Permanent – as in – lasting your whole life, not permanent like when a hair dye promises permanent long-lasting vibrant forest plum colour, that only lasts about 6 weeks and turns your bath water mauve for a month at which point your hair is back to its default colour. No – permanent means it won’t go away. Like when you accidentally sit on a Sharpie, no amount of treatment is going to fix it, and you just have to live with the fact that this is life, and no amount of oxi-clean is going to take the crappy bit away. So if the blue badges are only given to people with permanent disabilities, why do I have to reapply for it every 3 years? And why am I constantly having to give evidence about my disability back to the government authorities/healthcare systems who diagnosed me?! Three years does sound like a long time, I know, and in some contexts it is. But when this re-application is just one of many, punctuating numerous other forms for disability… necessities, shall we call them, it is just one more thing I have to do that involves stressing about finding and photocopying paperwork to prove my identity and my address, and then other paperwork from within the last 12 months to prove that I am in fact, disabled and not just pretending. Then there’s always the worry that the thing I really need will be taken away or I won’t qualify and things will be that bit more difficult when they don’t need to be.

Where was I? Ah yes, so you’ve got your form filled in (black ink only because writing in blood is frowned upon so you must spend an hour looking for a black pen which works, in a household which provides only pink felt tips and pencils so small only hobbits can use them) and you’ve searched your household filing systems for the right documents, but you still have the added fun of providing a passport photo to go with some of these application forms. Hands up if you’ve seen a photo-booth recently? With the exception of about 5 ‘accessible’ (I use that word with a pinch of salt, as the jury is still out on the definition of ‘accessibility’) photo-booths in the UK, a standard photo-booth is ridiculous. The process of getting a passport sized photo in a booth when you can neither walk nor stand is quite the pantomime.  It begins with Tom lifting me from my chair into the chokey – I mean, photo-booth, like a human pendulum to position me on a ROTATING stool the size of a bloody side-plate, only to find it’s too low or too high for me to actually get my face photographed. This is more like the Crystal Maze, just without Richard O’Brien shouting “GET OUT! GET OUT OR YOU WILL BE TRAPPED FOREVARRR!” We then have to guess how much to spin the stool-of-death up or down, lift me up again from my chair and hope for the best. If it’s still not the right height I’ll just have to do an ostrich-neck because it’s beyond amusing now. Doing this for anything other than actual passport renewal every ten years is too much. At least then you might have holiday photos and a tan to show for the hard-work. I know you can take your own photo against a white sheet and have it printed the right size and on the right type of paper, sounds easier, but really it’s not as fun for everyone to watch and it would leave me with less to write about. And also photo-booths look more fun. Every child has had the painful yearning to go and sit in the photo-booth whilst waiting for their mum to finish paying for the groceries, looking suspicious as they try and peak inside to see if it is occupied or not. I am still that child.

My disability is well and truly permanent, it has never and never will get better. I cannot repair my nerves with a soldering iron and expect them to perform their usual duties. They’ve never done that so they wouldn’t have the foggiest what they were doing. If science found a cure for me that meant my nerves started working and I could start to grow muscles back, you’d probably find me lolloping around near the sportswear in Costco like a newborn giraffe who is trying to learn to stand, except I’ll be sniffing the beautiful lycra and luminous running shoes and not a pile of straw. Then once I’d finally learnt to use my legs reliably you could probably find me stealing my fiance from work and boarding the next plane to the Alps shouting “FREEDOMMMM!”

When I was originally assessed for Disability Living Allowance, I was but a small creature still able to walk although I regularly fell over, I needed help to get dressed, put my hair up, bathe etc, and couldn’t do all the things my friends could but I could still ride a bike, go to gymnastics and got swimming certificates. I wasn’t confined to any mobility aid. I was given the middle-rate of the DLA Care component which I guess was fair seeing as I was still a child and most kids need some form of care from their parents anyway. When I was a lot older, no longer walking and needing a lot more help to do most things physical (apart from playing Bop-It, I was awesome at that) my mum applied for me to be re-assessed for the higher rate of the Care component, and was told ‘no’. I was still too capable for them despite having no muscle in my lower limbs, breaking my wrist, falling regularly and injuring myself a lot due to my disability and not even being able to go to the toilet without help. My mum appealed the decision and it was overturned luckily, but if we hadn’t thought there was a chance they’d change their decision, I would still be deemed as able now as I was as a young child. This is definitely not the case, and if deep-down I thought I really was that able still, I wouldn’t give two hoots about wanting my physical limitations to be acknowledged to get the care I need as an adult. If I could still do now what I could do as a child I’d be happy. Despite being a bit floppy. I’d like to think I’d manage pretty independently.

On the paperwork about DLA, it says I will be ‘awarded’ Disability Living Allowance INDEFINITELY, (not quite sure what talent I nurtured for DLA to seem like an award, but whatever, I’m pretty sure it wasn’t my Bop-It skillz) which is great, yet still I live in fear that the DLA will be taken away from me at some point, and somehow the promise of INDEFINITELY, doesn’t seem so promising given the current government.

So DLA is a non means-tested medical ‘award’, like an ongoing Bafta for people who can’t do their own trousers up or make a cup of tea, and the Blue Badge scheme is only automatically given for permanent disabilities and those who get the higher-rate mobility part of DLA, and yet I find myself having to prove my disabilities for one reason or another most years. So effectively I’m providing information about me from one government service to another in the country which diagnosed me, in order to get what I need. Don’t they have couriers for that?

This brings me onto the latest kick in the teeth which was being sent a letter from the NHS Business Services Authority, telling me that when I ticked the ‘maternity exemption’ box on a recent prescription, this was checked and there was no evidence that I had a maternity exemption card. Apparently it is the plastic card itself that makes you exempt from prescription charges, not the fact that you have just had a baby or are disabled, and because I have had a general medical exemption card due to my disability, I never thought I needed another card for maternity exemption aswell, I just tiked the maternity box as I thought it was quite obvious I was in a maternal state, what with my newborn baby and leaking boobs and everything. So my medical exemption card isn’t something I look at often, and I don’t think I’ve ever had to show it as it’s probably quite obvious to pharmacists that I have a medical condition, but unbeknown to me this card also expires! Every 5 years! But seeing as for the last 6 years or so I’ve also been in either pregnant or post-pregnant state and eligible for maternity exemption, this is the box I generally tick. I asked the gentleman on the phone why they were trying to charge me a penalty for not proving via the medium of PLASTIC CARD, to the NHS funded pharmacy that I have had three kids in an NHS hospital, am disabled etc, when it is in my NHS medical records? Surely this kind of information regarding patients is shared, when needed, to relevant parts of the NHS in your local area? Nope! That would be common sense! The NHS needs me to tell them something that the NHS already knows is the case. It is ridiculous. Sending in forms and waiting nervously for responses for things which shouldn’t need to be applied for in the first instance. They know all about me, they don’t need me to repeat it every month.

This is why it perpetually baffles me that people apply for certain ‘benefits’ and have their applications accepted, services or funding provided when they are fraudulently claiming their state of incapacity, and yet meanwhile children, young people and adults with severe disabilities are being told they don’t meet the criteria and are having to fund-raise or re-mortgage just so they can get the wheelchair or the prosthetic leg or a carer which they need to try and live a normal life. These indecent liars when they are exposed, are helping to add layer upon layer of red tape and bureaucratic bullshit for those who could do with less of that kind of stress.

Surely humans have had enough of fucking it up for their own species. We’re the only organisms with our own welfare system, yet the idiotic few are messing it all up for the ones who actually need to make use of it, through no fault of their own.

By the way the Blue Badg/disabled parking fiasco is ongoing, but that will be touched upon when you’ve recovered from reading this blog.

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You’re not invited.

To follow on from my previous blog post regarding the state of my ‘personal and social care needs’ (wait, I think I just vomited in my mouth), I thought I’d update you all on the still-going-on situation. 

After having to nitpick my way at an excruciatingly slow pace through 5 ‘average’ days in order for the panel (seriously it’s like X Factor only slightly more entertaining) to see what exactly I use my PA to help with, I sent the completed sheets back to the social worker. She sent them back. With revisions. Revisions which to the person suggesting them seemed completely fair and reasonable. But the revisions would leave me with crucial gaps where I need help to get things done on the days I don’t work and also on the days I do work.

One particular amendment would have meant that I wouldn’t be able to take my youngest daughter to a playgroup because, surely I don’t need help for every moment of being there. But what toddler do you know who adheres to a timetable of bowel movements or snack requirements? I need physical help to care for my children, they know that. So therefore it is a case of ‘which part of your parenting role is less important?’ Taking your children out to meet other kids and play, or be at home to make sure there are clean clothes to dress them in.

Fast forward a few weeks and the S-Factor judging panel want to know if they could casually chat to my employer about what help my PA provides me at work. And ask them why they can’t just pay for that help. Because surely they can hire someone else completely different just to help me tidy up and lift heavy boxes when other more capable staff do it for themselves? Yes that makes total sense and I have absolutely no reason to think that this intervention would at all make me feel like a burden on my workplace, to stick out more than I already do. Even if this part of the job role was carried out by my existing, perfectly good PA, why should the employer be asked to spend more on having me work for them when I come with this added extra cost? In what universe would it be favourable that they continue to employ me with my plus-one who they also have to pay, when they could just employ someone else, just like my other colleagues, who can complete all of the job responsibilities by themselves?

Wow. I’m seriously wondering if I should even work there myself. I am clearly not a capable person! Maybe I’m beginning to see what the Social Care team are gesturing at. I get it now..

..I shouldn’t have a job. By putting my degree, postgraduate and knowledge of children’s development to good use, for a charity who just want to improve outcomes for young children and families, something I care a great deal about, I am simply putting an extra strain on the economy, the welfare state, the local care trust and maybe eventually my employer? 

Dammit.

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