I did this last year so I might as well do it this year too. Even though this time I haven't had any major life changes like moving house or getting a new job, it's worth bearing in mind that Steve and I started 2008 with a spirited attempt to blow ourselves up so the entirety of the last 12 months has been something of a bonus. It's also slightly disturbing that my first complete 12 months of post-getting-ill paid employment has been so centred around the benefits system.
January
In contrast to last year, my birthday was a bit of a non-event, consisting of me buying myself some cake to take into work, and Steve getting a card for me while I was out. Over the next few days things improved. Full of positivity about life, I started an attempt at some self-administered Graded Exercise Therapy which lasted all of about two days before Steve begged me to stop it and I felt cruddy enough to acquiesce. The extra pain, faints, weakness and cognitive difficulties from those days lasted almost two weeks.
February
February saw the Department of Work and Pensions Secretary Peter Hain leaving his position after a row over his failure to disclose donations for his failed attempt to become deputy leader of the Labour Party. His defence consisted basically of trying to prove that he was incompetent rather than a fraudster, a defence the DWP refuses to hear from its "customers" but apparently finds acceptable from its management. His replacement, James Purnell, started gleefully outlining "reforms" to the welfare system, based largely on a report from a City banker who had spent three whole weeks studying the system before spouting a lot of inaccurate data largely based on his own personal opinions. I got very upset about this as I was struggling with work and an overwhelming awareness that if I didn't cope, I would have to throw myself on the mercy of the "reformed" system.
I was also struggling with a Tax Credits cockup from several years ago, which makes it even more baffling why I decided to re-apply for Disability Living Allowance.
March
I got my forms finished, mostly by typing it up rather than trying to fit the ins and outs and variations of my day-to-day difficulties into the boxes.
"The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks."
My new GP confirmed that she would be supporting my DLA claim, and several people kindly wrote supporting statements about their direct experience of how my condition affects me. Just as I got the DLA bundle completed and sent off, the Tax Credits people started up again...
April
While the ball rolled on the Tax Credits and DLA issues, I wrote the most popular blogpost I have ever written... The Gorilla Theory. It gets linked to all over the place and people keep telling me how much it has helped them. I'm very proud of it.
Five months after I had alerted them to the issue, the DWP sent me an amusing letter about how they had paid me too much money when I started work (they forgot to stop putting my Incapacity Benefit into my bank account despite me asking nicely) and now they wanted it back. It was amusing because even though the error was entirely theirs, the letter implied that it was my fault and I'd actively claimed the money on purpose and threatened me with the full weight of THE LAW if I did not arrange to repay the money immediately.
May
As is becoming usual, May started with Blogging Against Disablism Day. The hot disability topic was still the welfare reforms but I opted to write some musings about equality and difference:
"Equal does not mean identical for the same reason that different does not mean inferior, or, for that matter, superior."
I started to think about my career direction (or lack thereof) and Steve scared the hell out of me by taking half a dose of paracetamol.
My DLA claim was turned down, but unlike 2007, this time I was ready to fight it to appeal.
June
I finally bit the bullet and admitted that 20 hours over 5 days packing CDs is too much for me, and asked for help from everyone I could think of. The agencies who are supposed to help were the least helpful of all. My boss and I agreed that I would work 17.5 hours over 4 days and have Wednesdays off as a sort of mini-weekend to recover from Monday and Tuesday, and prepare for Thursday and Friday. This has worked incredibly well for me and I haven't needed a sick-day since.
The Tax Credits Appeals and Complaints department reviewed my appeal bundle and agreed that I don't owe them any money. I could claim Tax Credits as a working disabled person and be something like £3k a year better off, but I don't dare.
Remploy offered me £50 to falsify information, and to make it even worse they wouldn't even tell me what that information was - just sent me signature pages of forms.
July
Steve finished his exams and started work again and our financial position eased up almost instantly. He could have claimed benefit when our savings ran out, but having spent a couple of years watching in horrified amazement the merry dances that people like Pip, Bendy Girl and I have to perform not just before and during our genuine and necessary claims, but for months and years afterwards, he decided not unreasonably that he'd have to be starving first.
August
I didn't blog at all in August. There was a lot going on and I didn't have the brain-time to write any of it up. Steve and I went out and about a little bit more with our new-found income, but we also had to adjust to the new balancing act of my care needs and the effects of my job vs him being at work all day and no longer having all the time in the world for looking after me and keeping the household running. Social Services assessed me for help and I was approved for Direct Payments for care, as well as an emergency backup care plan.
I applied and was interviewed for a part-time admin job - didn't get it, but there was lots of positive feedback and it was a good confidence boost. We also went to Jiva and Munkt0n's wedding which was quite possibly the loveliest wedding I have ever attended.
September
With my DLA appeal drawing closer I found myself unable to concentrate properly on anything. Christmas orders started coming in at work and keeping on top of things, while do-able, was taking everything I had.
October
I won my DLA Appeal. It was backdated to the application date in February which meant I was suddenly owed a lump sum in excess of £2,000. I am proud of having introduced the Appeals panel to Spoon Theory.
After some prodding, I also got an official response about the Remploy problems from back in June. It was as pathetic as I have come to expect.
Then it was off to Lowestoft for a week's holiday with Pip and The Boy. This would have been a great idea, and I felt extremely well-rested, except for the bit where I came home to discover that I had to fit in a whole lot of extra housework because while I'd been away Steve had been having one of those weeks.
November
I finally got to go into town to open a bank account in order to receive Direct Payments, to pay for the care Social Services assessed me as needing.
"The whole thing is a bit chicken and egg, really - to get Direct Payments, I have to go into town and set up a bank account, but that's a major excursion for me, so really, I need Direct Payments to pay a PA to go into town with me to set up a bank account so I can get Direct Payments to pay a PA..."
I had another job interview which didn't go so well as it turned out to be for a full-time job, and much as I would like to, there is no way I can do full-time work.
Then my laptop died with a virus of great horribleness. Never before had I picked up a computer virus which my antivirus program couldn't swiftly and efficiently dispatch. We ended up with no real option but a complete fresh reinstall of Windows and then very carefully scanning and replacing files from backups. I know I'm an addict, but I didn't realise it would upset me as much as it did. I will be more careful.
December
Steve and I underwent the ultimate test of the strength of a relationship - we went to IKEA. We survived.
The Welfare Reforms mooted in February came to the fore yet again. The banker's report is being treated as rock-solid fact, and the BBC is somehow combining stories of mass redundancies with the stereotypical image of benefit claimants as scroungers who cannot be bothered. It scares me.
I got my Christmas Tree and decorated it, and with a stack of assorted presents underneath it was the centrepiece of a wonderful Christmas.
And now, I understand from my charming assistant that the fireworks have been purchased and the weather tonight looks to be cold but clear. Hopefully, see you on the other side - Happy New Year!
Wednesday, December 31, 2008
Monday, December 29, 2008
Standard Christmas Post
That was a nice Christmas. Steve and I had four days off work together which hasn't happened since last Christmas, and that was less a holiday than a hectic whirl of visiting people in between nap-breaks in our hotel room, so really, we needed this.
For me it was five days, since Christmas Eve fell on a Wednesday which is my day off anyway. We'd both worked steadily at getting the house sorted out so that we wouldn't have to DO anything much - gold star to Steve who deep-cleaned the entire bathroom including the ceiling - so on Christmas Eve all I really had to do was press the button on the Roomba, which isn't taxing housework by anybody's standards. After dinner a friend came round bearing gifts and a card, and it felt very Christmassy indeed.
Christmas Day started with a glorious lie-in. At about 11am, Steve's mother came round, and then we started on the presents. My highlights were the set of KnitPicks Options interchangeable circular knitting needles, which I knew I was getting, and the iPod nano which I had no idea about. Both of those were from Steve. I think Steve's best present was the 1.5 kilos of jelly beans from one of his friends.
Christmas dinner consisted of sausages, cooked and served by Steve, with some roast potatoes with onion and bacon bits, mixed veggies, and gravy. Many people seem appalled by this, including Steve's workmates and my mother, but our logic was sound:
1) We wanted a meal we would enjoy. Steve knows he cooks sausages to perfection. However neither of us have ever attempted to cook a turkey, and my obvious limitations mean that even a regular roast dinner can be quite an adventure. So we opted for definitely-yummy sausages over a potentially disastrous attempt at Christmas Turkey Dinner With All The Trimmings.
2) We don't get much time off work together. There were better things for us to do with this precious four-day block than spend a day prepping, a day cooking, and two days washing-up.
3) Not to mention two weeks of leftovers.
4) If we happen to fancy a Turkey Dinner With All The Trimmings we can go to a carvery any week of the year and stack more (properly-cooked) grub on our plates than we can eat. We're in a fortunate position where it's not like Christmas dinner represents the one decent meal of the winter.
Plus, of course, by the time my mother phoned and expressed her horror at Sausages For Christmas Dinner, she hadn't even eaten yet, while at our house the dishes were done, the ice-cream was eaten, and Steve's mother was giving us both a run for our money on the Wii. So in the absence of the dedicated chef (mum's husband is not only an excellent cook, but actually enjoys doing it) I think our version was just fine.
I got a nap in while Steve and his mum went for a walk, and then she went home and we settled down for a nice relaxing evening.
Boxing Day was more of the same. A lie-in and a couple of hours pottering about the house playing with presents, followed by a leisurely jaunt into Warwick and a cream tea at a ye olde tea shoppe near the castle. Saturday was a lie-in, bacon sandwiches, and a trip out for some milk which turned into a couple of hours with friends at a slightly remote pub near Cubbington, complete with roaring log fire and dogs in the bar. Sunday's lie-in was followed by a trip to Kenilworth Castle, which was fun. It was also a lot more accessible than I thought it would be, so we'll have to go back in the summer when hopefully I'll be a bit more mobile again, and we can appreciate it without the pressing issue of freezing cold.
So, today is back to work day. Notable absence of lie-ins and weirdness of being in the house by myself all morning.
I don't want to post this, because posting this means my holiday is over... :(
For me it was five days, since Christmas Eve fell on a Wednesday which is my day off anyway. We'd both worked steadily at getting the house sorted out so that we wouldn't have to DO anything much - gold star to Steve who deep-cleaned the entire bathroom including the ceiling - so on Christmas Eve all I really had to do was press the button on the Roomba, which isn't taxing housework by anybody's standards. After dinner a friend came round bearing gifts and a card, and it felt very Christmassy indeed.
Christmas Day started with a glorious lie-in. At about 11am, Steve's mother came round, and then we started on the presents. My highlights were the set of KnitPicks Options interchangeable circular knitting needles, which I knew I was getting, and the iPod nano which I had no idea about. Both of those were from Steve. I think Steve's best present was the 1.5 kilos of jelly beans from one of his friends.
Christmas dinner consisted of sausages, cooked and served by Steve, with some roast potatoes with onion and bacon bits, mixed veggies, and gravy. Many people seem appalled by this, including Steve's workmates and my mother, but our logic was sound:
1) We wanted a meal we would enjoy. Steve knows he cooks sausages to perfection. However neither of us have ever attempted to cook a turkey, and my obvious limitations mean that even a regular roast dinner can be quite an adventure. So we opted for definitely-yummy sausages over a potentially disastrous attempt at Christmas Turkey Dinner With All The Trimmings.
2) We don't get much time off work together. There were better things for us to do with this precious four-day block than spend a day prepping, a day cooking, and two days washing-up.
3) Not to mention two weeks of leftovers.
4) If we happen to fancy a Turkey Dinner With All The Trimmings we can go to a carvery any week of the year and stack more (properly-cooked) grub on our plates than we can eat. We're in a fortunate position where it's not like Christmas dinner represents the one decent meal of the winter.
Plus, of course, by the time my mother phoned and expressed her horror at Sausages For Christmas Dinner, she hadn't even eaten yet, while at our house the dishes were done, the ice-cream was eaten, and Steve's mother was giving us both a run for our money on the Wii. So in the absence of the dedicated chef (mum's husband is not only an excellent cook, but actually enjoys doing it) I think our version was just fine.
I got a nap in while Steve and his mum went for a walk, and then she went home and we settled down for a nice relaxing evening.
Boxing Day was more of the same. A lie-in and a couple of hours pottering about the house playing with presents, followed by a leisurely jaunt into Warwick and a cream tea at a ye olde tea shoppe near the castle. Saturday was a lie-in, bacon sandwiches, and a trip out for some milk which turned into a couple of hours with friends at a slightly remote pub near Cubbington, complete with roaring log fire and dogs in the bar. Sunday's lie-in was followed by a trip to Kenilworth Castle, which was fun. It was also a lot more accessible than I thought it would be, so we'll have to go back in the summer when hopefully I'll be a bit more mobile again, and we can appreciate it without the pressing issue of freezing cold.
So, today is back to work day. Notable absence of lie-ins and weirdness of being in the house by myself all morning.
I don't want to post this, because posting this means my holiday is over... :(
Wednesday, December 17, 2008
Tree!
If you were here at this time last year, you'll know that I love Christmas. Last year Steve and I went back to Lowestoft to see everyone for Christmas, which was nice, but this year we're staying at home instead. I'm really looking forward to it.
Of course it did mean that I needed something I haven't had for several years: a Christmas tree. Last year, well, there was going to be a tree at mum's house, and given that I had quite enough on my plate with getting suitcases packed, and gifts bought and wrapped, not to mention still settling in to living here and having just started a new job, getting a tree didn't seem like any kind of priority. In the years before that, I lived in my tiny little flat, so all there was room for was a tree-shaped ornament. But now... this is my home, I will be here all Christmas, I have room for a tree, and by the gods, a tree I shall have.
My quest for a tree didn't go according to plan (go ahead, look surprised). I'd figured on getting one from those esteemed purveyors of seasonal tat, Woolworths. No sooner had I vocalised this plan than Woolworths went under and the Final Clearance Sale started. By the time I'd got round to my day off, and gone into the local branch in search of a tree, the "Christmas" section consisted of a few folorn packs of baubles scattered on the otherwise barren shelves.
Time to formulate Plan B. I started by considering my specification. I definitely wanted an artificial tree rather than a real one. I wanted it to be bigger than a shelf-ornament (so I could hang decorations on it), but preferably no taller than me (so I could hang decorations on it). I wanted it green, without fake snow or glitter. I did not want a fibreoptic tree and, although I hadn't realised it was an option, I prefer my tree to be the conventional way up.
This is a taller order than you might first think...
I trundled along the rest of the high street but couldn't find any trees that fit my spec. We tried local supermarkets without success. On Saturday we went to Solihull and looked in John Lewis. They had a lovely Christmas section, but all the trees were far too big. There was one pre-lit tree which was just so pretty I could have forgiven it for being too big, but it was something like £175 and my budget was more in the £30 region.
But then, the skies parted and I was advised to look in Homebase or Focus (I'm unsure to what extent they are one and the same thing). So on Monday morning, Steve dropped me off at the retail park on his way to work, and I went into Focus, and I found their last 4ft artificial green right-way-up unlit unsnowy unglittery tree! And I was happy! So happy! The tree plus a dozen or so decorations remained well under my £30 budget, and I went home exuding joy from every pore.
Things have been a little hectic since then - work on Monday afternoon, work Christmas do on Monday evening, recovering on Tuesday morning, work on Tuesday afternoon, last knitting group of the year on Tuesday evening... however Wednesday is my day off, so I assembled and decorated my tree late on Tuesday night, after knitting. Here it is in all its glory:
I am so happy. There's presents underneath it now and everything.
Oh, and while we're at it with the Christmassy goodness, remember, just like last year, the final UK posting date for Christmas cards is Saturday 20th December. It'll take you ten minutes. Make someone happy.
Of course it did mean that I needed something I haven't had for several years: a Christmas tree. Last year, well, there was going to be a tree at mum's house, and given that I had quite enough on my plate with getting suitcases packed, and gifts bought and wrapped, not to mention still settling in to living here and having just started a new job, getting a tree didn't seem like any kind of priority. In the years before that, I lived in my tiny little flat, so all there was room for was a tree-shaped ornament. But now... this is my home, I will be here all Christmas, I have room for a tree, and by the gods, a tree I shall have.
My quest for a tree didn't go according to plan (go ahead, look surprised). I'd figured on getting one from those esteemed purveyors of seasonal tat, Woolworths. No sooner had I vocalised this plan than Woolworths went under and the Final Clearance Sale started. By the time I'd got round to my day off, and gone into the local branch in search of a tree, the "Christmas" section consisted of a few folorn packs of baubles scattered on the otherwise barren shelves.
Time to formulate Plan B. I started by considering my specification. I definitely wanted an artificial tree rather than a real one. I wanted it to be bigger than a shelf-ornament (so I could hang decorations on it), but preferably no taller than me (so I could hang decorations on it). I wanted it green, without fake snow or glitter. I did not want a fibreoptic tree and, although I hadn't realised it was an option, I prefer my tree to be the conventional way up.
This is a taller order than you might first think...
I trundled along the rest of the high street but couldn't find any trees that fit my spec. We tried local supermarkets without success. On Saturday we went to Solihull and looked in John Lewis. They had a lovely Christmas section, but all the trees were far too big. There was one pre-lit tree which was just so pretty I could have forgiven it for being too big, but it was something like £175 and my budget was more in the £30 region.
But then, the skies parted and I was advised to look in Homebase or Focus (I'm unsure to what extent they are one and the same thing). So on Monday morning, Steve dropped me off at the retail park on his way to work, and I went into Focus, and I found their last 4ft artificial green right-way-up unlit unsnowy unglittery tree! And I was happy! So happy! The tree plus a dozen or so decorations remained well under my £30 budget, and I went home exuding joy from every pore.
Things have been a little hectic since then - work on Monday afternoon, work Christmas do on Monday evening, recovering on Tuesday morning, work on Tuesday afternoon, last knitting group of the year on Tuesday evening... however Wednesday is my day off, so I assembled and decorated my tree late on Tuesday night, after knitting. Here it is in all its glory:
I am so happy. There's presents underneath it now and everything.
Oh, and while we're at it with the Christmassy goodness, remember, just like last year, the final UK posting date for Christmas cards is Saturday 20th December. It'll take you ten minutes. Make someone happy.
Sunday, December 07, 2008
Welfare Reform
I'm sure many of the people who read this blog will have encountered the stories in the news about James Purnell's work for welfare plans. On the face of it, and to particular types of people (generally the ones who are well educated/spoken/connected/balanced/experienced/etc enough to have never had too much trouble getting a job) the plans seem quite reasonable - "severely disabled people" and single parents of babies under one will be supported, everyone else will have to work for their money. And let's face it, those are the people we want to help with our taxes. We've had quite enough of supporting entire workless families like the Malcolm family who fulfil every stereotype of a feckless wastrel benefit scrounger that you ever heard (seriously, whichever reporter dug that lot up deserves a bloody medal).
Why does it bother me anyway? I have a job. Well, it bothers me because I know how extremely lucky I am to have got into a position where I could look for work, let alone how fortunate I was to actually get a job. I know that all it takes is one factor to slip - Steve and I breaking up, a change in Access to Work criteria, the company I work for to collapse - and all of a sudden I will be back on the scrapheap, and in a jobs market which is terrifying compared to what it was a year ago. It also bothers me because I know too many people who are in similar positions to the one I was in before I moved in with Steve, who would like to be working and earning their own money but simply aren't in a position to manage it.
The first problem is this "severely disabled" idea. The criteria for this is incredibly stringent. The Benefits and Work website has a free Employment and Support Allowance (ESA) self-assessment test. I count as disabled, but not severely enough that my capacity for work-related activity would be considered "limited", which has surprised a couple of people who know me.
It's not just me though. Here's an example from the DWP's own guidance (pdf):
"Customer receiving DLA (middle rate care) and DLA(higher rate mobility). A person with severe rheumatoid arthritis affecting the hands and feet, limiting the ability to walk and needing some help to wash, dress, cut up food, and attend to toileting needs. The customer is living alone and nobody receives Carer’s Allowance for looking after him."
That is an example of someone who is NOT considered to have limited capability to undertake work-related activity.
They cannot walk, dress, wash, eat, or go to the loo unaided, but they are considered to be perfectly able to do full work-related activity. And they will face "sanctions" if they cannot manage it.
How on earth does that work?!?
The second problem is the idea of full-time work-related activity or community work. Regular readers will be aware that I recently had to bow out of a great interview for a job that I really wanted to do at a place where I really wanted to work, just because it was full time. I'd love to earn full-time wages but the unfortunate truth is that I cannot manage to do a full-time job AND keep on top of life's essentials such as showering and eating and so on - as we've covered before, I'm pretty stretched just working part-time.
These new plans, however, would have me "working" 9-5, and facing "sanctions" when I failed to manage it. Which brings us neatly on to the third issue, which is rates of pay.
Basic ESA is £60.50 per week, which is the same as Jobseeker's Allowance for a person over 25 years of age. Then there's £24 on top of it for participating in the Work-Related Activity. I understand this is the bit that gets withdrawn if you "refuse to co-operate" by, for example, being stubbornly too ill to leave the house on more than one morning.
I suspect there are very few people reading this who would consider working full time for £85 a week, but disabled people will have a choice between that and real heat-or-eat poverty. You see, there are two good reasons why Incapacity Benefit at the long-term rate is more than Jobseeker's Allowance. The first reason is that a disabled person generally has to cover more costs than an able-bodied person. DLA (supposedly) accounts for the additional personal-care-related and mobility-related costs, for instance Meals on Wheels and taxi fares, but there are also increases in general costs - things like having to do more laundry due to frequently spilling things, buying more trousers because they wear through at the knees as you crawl around your home, or having to have an internet connection because you do not have the capacity to get to and around the local shops nor the supermarket for your essential groceries. The second reason is that it generally takes longer for a disabled person to secure a job, during which time they will have more household expenses of the sort that the able-bodied person on short-term JSA could defer until they'd got a job. I'll explain. Even putting aside issues of access and discrimination at the interview stage... let's say that the odds of getting a job are one in a hundred, so if you apply for a hundred jobs you will get one of them. While an able-bodied person could, technically, apply for every job in the paper that they were qualified for and hit the hundred in a few weeks, a disabled person with the same level of qualifications will only be able to apply for the few jobs that also match their physical capabilities - it could take a year or more to find a hundred suitable jobs to apply for during which time the boiler will still need repairing and the wheelchair will need a service.
Even Reasonable Adjustments and Access to work can't make everything possible. A reminder of a post I made before I got my job:
"I still have certain limitations. The obvious physical symptoms of my illness rule out quite a lot of things, especially in terms of the usual easy-to-get minimum-wage flexible-hours jobs. I don't think I'm in any way 'above' cleaning toilets or serving fast-food or collecting trolleys from a supermarket carpark, but I would do such an ineffective job of those tasks that really, another person would have to be employed just to pick up my slack."
Which brings me to my final point. Even with the job that I do, which looked possible enough to make it worthwhile applying, it costs quite a bit of money to keep me in work. I need taxis to and from work. There are no other transport options available to me so the taxpayer contributes about £40 a week to my taxi fares (I pay the rest). I also have a special machine, a mechanical press, bought by the taxpayer as I cannot use the hand-press my co-worker uses. That was £500. Other people need different things - Lilwatchergirl needed a wheelchair, an office chair, an ergonomic keyboard and mouse, and a PDA; Lady Bracknell's Editor needed a laptop and "Secure Remote Access System" to enable her to work from home when necessary, plus however many man-hours were required to untangle the inevitable snarl-ups; various other people have required voice recognition software or Braille displays or even actual human assistants to help with certain parts of their work. That's before we even get started on the costs of things of uncertain merit like DEAs and Remploy. All things considered, I suspect there are more than a couple of us who cost more money "working" than they did claiming IB. How will the costs of enabling us to attend and accomplish "work-related activity" be met on top of paying full ESA?
I don't have all, or indeed any of the answers, but what I have heard so far about the reforms strikes me as badly-thought-out and more than a little scary.
Why does it bother me anyway? I have a job. Well, it bothers me because I know how extremely lucky I am to have got into a position where I could look for work, let alone how fortunate I was to actually get a job. I know that all it takes is one factor to slip - Steve and I breaking up, a change in Access to Work criteria, the company I work for to collapse - and all of a sudden I will be back on the scrapheap, and in a jobs market which is terrifying compared to what it was a year ago. It also bothers me because I know too many people who are in similar positions to the one I was in before I moved in with Steve, who would like to be working and earning their own money but simply aren't in a position to manage it.
The first problem is this "severely disabled" idea. The criteria for this is incredibly stringent. The Benefits and Work website has a free Employment and Support Allowance (ESA) self-assessment test. I count as disabled, but not severely enough that my capacity for work-related activity would be considered "limited", which has surprised a couple of people who know me.
It's not just me though. Here's an example from the DWP's own guidance (pdf):
"Customer receiving DLA (middle rate care) and DLA(higher rate mobility). A person with severe rheumatoid arthritis affecting the hands and feet, limiting the ability to walk and needing some help to wash, dress, cut up food, and attend to toileting needs. The customer is living alone and nobody receives Carer’s Allowance for looking after him."
That is an example of someone who is NOT considered to have limited capability to undertake work-related activity.
They cannot walk, dress, wash, eat, or go to the loo unaided, but they are considered to be perfectly able to do full work-related activity. And they will face "sanctions" if they cannot manage it.
How on earth does that work?!?
The second problem is the idea of full-time work-related activity or community work. Regular readers will be aware that I recently had to bow out of a great interview for a job that I really wanted to do at a place where I really wanted to work, just because it was full time. I'd love to earn full-time wages but the unfortunate truth is that I cannot manage to do a full-time job AND keep on top of life's essentials such as showering and eating and so on - as we've covered before, I'm pretty stretched just working part-time.
These new plans, however, would have me "working" 9-5, and facing "sanctions" when I failed to manage it. Which brings us neatly on to the third issue, which is rates of pay.
Basic ESA is £60.50 per week, which is the same as Jobseeker's Allowance for a person over 25 years of age. Then there's £24 on top of it for participating in the Work-Related Activity. I understand this is the bit that gets withdrawn if you "refuse to co-operate" by, for example, being stubbornly too ill to leave the house on more than one morning.
I suspect there are very few people reading this who would consider working full time for £85 a week, but disabled people will have a choice between that and real heat-or-eat poverty. You see, there are two good reasons why Incapacity Benefit at the long-term rate is more than Jobseeker's Allowance. The first reason is that a disabled person generally has to cover more costs than an able-bodied person. DLA (supposedly) accounts for the additional personal-care-related and mobility-related costs, for instance Meals on Wheels and taxi fares, but there are also increases in general costs - things like having to do more laundry due to frequently spilling things, buying more trousers because they wear through at the knees as you crawl around your home, or having to have an internet connection because you do not have the capacity to get to and around the local shops nor the supermarket for your essential groceries. The second reason is that it generally takes longer for a disabled person to secure a job, during which time they will have more household expenses of the sort that the able-bodied person on short-term JSA could defer until they'd got a job. I'll explain. Even putting aside issues of access and discrimination at the interview stage... let's say that the odds of getting a job are one in a hundred, so if you apply for a hundred jobs you will get one of them. While an able-bodied person could, technically, apply for every job in the paper that they were qualified for and hit the hundred in a few weeks, a disabled person with the same level of qualifications will only be able to apply for the few jobs that also match their physical capabilities - it could take a year or more to find a hundred suitable jobs to apply for during which time the boiler will still need repairing and the wheelchair will need a service.
Even Reasonable Adjustments and Access to work can't make everything possible. A reminder of a post I made before I got my job:
"I still have certain limitations. The obvious physical symptoms of my illness rule out quite a lot of things, especially in terms of the usual easy-to-get minimum-wage flexible-hours jobs. I don't think I'm in any way 'above' cleaning toilets or serving fast-food or collecting trolleys from a supermarket carpark, but I would do such an ineffective job of those tasks that really, another person would have to be employed just to pick up my slack."
Which brings me to my final point. Even with the job that I do, which looked possible enough to make it worthwhile applying, it costs quite a bit of money to keep me in work. I need taxis to and from work. There are no other transport options available to me so the taxpayer contributes about £40 a week to my taxi fares (I pay the rest). I also have a special machine, a mechanical press, bought by the taxpayer as I cannot use the hand-press my co-worker uses. That was £500. Other people need different things - Lilwatchergirl needed a wheelchair, an office chair, an ergonomic keyboard and mouse, and a PDA; Lady Bracknell's Editor needed a laptop and "Secure Remote Access System" to enable her to work from home when necessary, plus however many man-hours were required to untangle the inevitable snarl-ups; various other people have required voice recognition software or Braille displays or even actual human assistants to help with certain parts of their work. That's before we even get started on the costs of things of uncertain merit like DEAs and Remploy. All things considered, I suspect there are more than a couple of us who cost more money "working" than they did claiming IB. How will the costs of enabling us to attend and accomplish "work-related activity" be met on top of paying full ESA?
I don't have all, or indeed any of the answers, but what I have heard so far about the reforms strikes me as badly-thought-out and more than a little scary.
Monday, December 01, 2008
IKEA
This weekend, Steve and I have mostly been nest-building.
It started with someone giving us their old TV, and the unit it sat on. It was nothing spectacular but it was an improvement on what we had. This caused us to cast a critical eye over the rest of the lounge with a view to upgrading. The most important thing was sorting out the sofa - which is in fact a cheap sofa-bed that has been, um, well-used for almost a decade and was getting to be less than comfortable, to the extent where certain friends had taken to turning up at our house for an evening carrying their own cushions. Steve ordered a new futon mattress for it which we went to collect on Saturday.
The new mattress is a vast improvement. It's about six inches thick and is an actual multi-layered mattress rather than the previous cheap 'slab of foam' option. It looks a lot nicer too, being covered with clean black cotton rather than an slightly battered old duvet cover. But that was where we ran into a slight hiccup, namely that all of a sudden the seventeenth-hand pale floral-print cushions we'd inherited from who-knows-where, which were quite innocuous on the old duvet cover, suddenly looked very silly indeed.
And so we decided, three years into our relationship and one year into our cohabitation, that it was finally time to take that step and Go To Ikea.
It was never going to be easy. We started off badly, with Steve exuding his "I Do Not Want To Do This" vibes before we'd even left the house. In an effort to be considerate to him, I decided that rather than asking him to put my wheelchair into the car (his car isn't quite big enough for the chair unless we either fold down the back seats, or remove the parcel shelf and have the chair sticking up slightly obscuring the rear window), I would use one of the store's customer wheelchairs. This was not the master plan I had hoped it would be.
We arrived at the "Ikea Plaza" and instead of going into the dedicated Ikea multi-storey car park, Steve chose to park in the Plaza car park. I asked him to check whether the car park we were in had free parking for Blue Badge holders or whether we needed a ticket. Next thing I knew he was coming back to the car holding a one-hour ticket on the basis that he didn't have enough change for more than that. I do not know why he didn't ask me for change. I do not know why he thought that one hour would be enough to get around such an enormous shop. I do not know why he did not want to go into the multi-storey car park that offered free parking for people shopping in Ikea. However by this point the I Do Not Want To Do This vibe had become an almost visible aura so I kept my mouth shut.
There were no staff on the ground floor and precious few directions other than an instruction to start shopping on Level Six. Steve's stress and anger levels were by this point heating the air to a four-foot radius around him and small children were running away in fear. Nevertheless we found the wheelchairs, snared a staff member to check that it was okay for us to just grab one, and started shopping.
Or we tried to, anyway. Twenty metres in it was apparent what an incredibly bad idea this whole thing had been. The wheelchair was practically falling apart, with footplates which wanted to scrape on the floor and a tyre which was gradually shaving itself away against the arm-rest. I wanted to get out, turn around and go back to the car, but the little entry gates had closed behind us, and some display rooms containing many likely-looking cushions were enticingly ahead. We pressed on.
Quick guide to IKEA shopping: Do not bother with the catalogue while in the store, it'll only confuse matters. Treat the first level of the shop as a sort of three-dimensional catalogue. You see something you like, you pick it up, look at the tag, and make a note of its name, size, colour and whereabouts in the store the versions of it that aren't the display model can actually be found. Except that there are some things that you have to go find, and some things that you just pick up. Accept that you will have to travel several miles around the store in order to escape again.
We didn't know any of that. I was gazing at the information on the labels wondering what was important and what wasn't, and whether we really had to (a) write down the details for every cushion that I sort-of liked or (b) go round the store twice, once to look and once to get details written down. Trying to combine getting my head round the system plus a Steve increasingly close to explosion, plus an uncomfortable wheelchair which the NHS would have rejected, multiplied by having no option to abandon the whole escapade, drop everything and leave the shop, meant I was tense and stressed and aargh...
Nevertheless, there's some nice-looking stuff in Ikea, and it was definitely the right place to go, as before long we had found suitable cushions (three of a sort that you physically picked up then and there and two that you went to collect on a different floor) and also our If We Happen To See A Nice One Bonus Item of lap trays. But this was where the clash of shopping styles really took its toll.
The way Ikea want you to shop, is to meander around the store with a trolley or a bag, picking up interesting looking things as you hunt for the thing you are actually seeking. The store layout is such that in order to get to the exit a customer has to walk right around at least two levels of the store in a sort of repeating "S" pattern, with actual walls blocking the direct routes. In this way you are forced to walk past 17,000 products you don't want in the hope that you will impulse-buy at least one or two.
This clashes with the way Steve wants to shop, which is to locate the section for the specific item(s) he is there to buy, choose one, and make for the checkouts. Although that said, he is usually willing to take his time and allow me to browse through anything that catches my interest.
It also clashes with the way I want to shop. I'm all for meandering amongst interesting things and for this I am lucky in that I can walk or self-propel over very short distances. However, despite the provision of wheelchairs, there's no wheelchair-trolleys (or at least not that we could find). There are big yellow bags, for shoppers who are determined that they won't need a trolley, but no way of hanging these on the back of the chair. So when we found the three cushions that we were meant to pick up then and there, they ended up in a yellow bag on my lap with me peeking over the top. That in turn meant that I could not meander by self propelling, because my arms were occupied with the bag, and also that I could not periodically get out of the (uncomfortable) chair to meander with my stick, because my legs were pinned.
I was stuck in the chair, the chair was wherever Steve pushed it, and because of the aforementioned dodginess of the chair including self-shaving tyres, the chair was extremely difficult for Steve to push.
Add in the factor of the rapidly-running-out parking ticket, and now there's Steve all stressed because he's getting sore and tired and he's having to hike around this entire store so slowly when all he wants to do is pay and leave, I'm all stressed because I'm also sore and tired and I'm going so fast past this entire storeful of shiny and intriguing things that I want to investigate, and anyone who impeded us probably got stressed as they keeled over from the sheer force of Steve's Laser Death Stare With Muttered Cursing.
It was a relief to get out.
However. We did get out, so that's a win. We still love each other and although we were both a little snappy and stressed we didn't have the Ikea Row which I understand to be traditional. We went a little over our one-hour of parking, but we didn't get clamped or ticketed. And, more importantly, we accomplished cushions. Three black cottony ones which match the futon mattress, two massive flame-coloured red-orange soft felty ones which provide a lovely warm contrast, and two cushioned lap-trays suitable for laptops, books, writing or dinner.
(Oh, I also stole a pencil, but Steve says it doesn't count because I didn't mean to - I'd jammed it into my ponytail, which is my standard way of holding on to pens and pencils because they fall out from behind my ear, and then I'd forgotten about it.)
I am extremely comfortable now. But if there's a next time it will involve my own wheelchair, at least one more person, and at least two more hours. Oh, and I'll be frisking Steve for sharp implements and matches.
It started with someone giving us their old TV, and the unit it sat on. It was nothing spectacular but it was an improvement on what we had. This caused us to cast a critical eye over the rest of the lounge with a view to upgrading. The most important thing was sorting out the sofa - which is in fact a cheap sofa-bed that has been, um, well-used for almost a decade and was getting to be less than comfortable, to the extent where certain friends had taken to turning up at our house for an evening carrying their own cushions. Steve ordered a new futon mattress for it which we went to collect on Saturday.
The new mattress is a vast improvement. It's about six inches thick and is an actual multi-layered mattress rather than the previous cheap 'slab of foam' option. It looks a lot nicer too, being covered with clean black cotton rather than an slightly battered old duvet cover. But that was where we ran into a slight hiccup, namely that all of a sudden the seventeenth-hand pale floral-print cushions we'd inherited from who-knows-where, which were quite innocuous on the old duvet cover, suddenly looked very silly indeed.
And so we decided, three years into our relationship and one year into our cohabitation, that it was finally time to take that step and Go To Ikea.
It was never going to be easy. We started off badly, with Steve exuding his "I Do Not Want To Do This" vibes before we'd even left the house. In an effort to be considerate to him, I decided that rather than asking him to put my wheelchair into the car (his car isn't quite big enough for the chair unless we either fold down the back seats, or remove the parcel shelf and have the chair sticking up slightly obscuring the rear window), I would use one of the store's customer wheelchairs. This was not the master plan I had hoped it would be.
We arrived at the "Ikea Plaza" and instead of going into the dedicated Ikea multi-storey car park, Steve chose to park in the Plaza car park. I asked him to check whether the car park we were in had free parking for Blue Badge holders or whether we needed a ticket. Next thing I knew he was coming back to the car holding a one-hour ticket on the basis that he didn't have enough change for more than that. I do not know why he didn't ask me for change. I do not know why he thought that one hour would be enough to get around such an enormous shop. I do not know why he did not want to go into the multi-storey car park that offered free parking for people shopping in Ikea. However by this point the I Do Not Want To Do This vibe had become an almost visible aura so I kept my mouth shut.
There were no staff on the ground floor and precious few directions other than an instruction to start shopping on Level Six. Steve's stress and anger levels were by this point heating the air to a four-foot radius around him and small children were running away in fear. Nevertheless we found the wheelchairs, snared a staff member to check that it was okay for us to just grab one, and started shopping.
Or we tried to, anyway. Twenty metres in it was apparent what an incredibly bad idea this whole thing had been. The wheelchair was practically falling apart, with footplates which wanted to scrape on the floor and a tyre which was gradually shaving itself away against the arm-rest. I wanted to get out, turn around and go back to the car, but the little entry gates had closed behind us, and some display rooms containing many likely-looking cushions were enticingly ahead. We pressed on.
Quick guide to IKEA shopping: Do not bother with the catalogue while in the store, it'll only confuse matters. Treat the first level of the shop as a sort of three-dimensional catalogue. You see something you like, you pick it up, look at the tag, and make a note of its name, size, colour and whereabouts in the store the versions of it that aren't the display model can actually be found. Except that there are some things that you have to go find, and some things that you just pick up. Accept that you will have to travel several miles around the store in order to escape again.
We didn't know any of that. I was gazing at the information on the labels wondering what was important and what wasn't, and whether we really had to (a) write down the details for every cushion that I sort-of liked or (b) go round the store twice, once to look and once to get details written down. Trying to combine getting my head round the system plus a Steve increasingly close to explosion, plus an uncomfortable wheelchair which the NHS would have rejected, multiplied by having no option to abandon the whole escapade, drop everything and leave the shop, meant I was tense and stressed and aargh...
Nevertheless, there's some nice-looking stuff in Ikea, and it was definitely the right place to go, as before long we had found suitable cushions (three of a sort that you physically picked up then and there and two that you went to collect on a different floor) and also our If We Happen To See A Nice One Bonus Item of lap trays. But this was where the clash of shopping styles really took its toll.
The way Ikea want you to shop, is to meander around the store with a trolley or a bag, picking up interesting looking things as you hunt for the thing you are actually seeking. The store layout is such that in order to get to the exit a customer has to walk right around at least two levels of the store in a sort of repeating "S" pattern, with actual walls blocking the direct routes. In this way you are forced to walk past 17,000 products you don't want in the hope that you will impulse-buy at least one or two.
This clashes with the way Steve wants to shop, which is to locate the section for the specific item(s) he is there to buy, choose one, and make for the checkouts. Although that said, he is usually willing to take his time and allow me to browse through anything that catches my interest.
It also clashes with the way I want to shop. I'm all for meandering amongst interesting things and for this I am lucky in that I can walk or self-propel over very short distances. However, despite the provision of wheelchairs, there's no wheelchair-trolleys (or at least not that we could find). There are big yellow bags, for shoppers who are determined that they won't need a trolley, but no way of hanging these on the back of the chair. So when we found the three cushions that we were meant to pick up then and there, they ended up in a yellow bag on my lap with me peeking over the top. That in turn meant that I could not meander by self propelling, because my arms were occupied with the bag, and also that I could not periodically get out of the (uncomfortable) chair to meander with my stick, because my legs were pinned.
I was stuck in the chair, the chair was wherever Steve pushed it, and because of the aforementioned dodginess of the chair including self-shaving tyres, the chair was extremely difficult for Steve to push.
Add in the factor of the rapidly-running-out parking ticket, and now there's Steve all stressed because he's getting sore and tired and he's having to hike around this entire store so slowly when all he wants to do is pay and leave, I'm all stressed because I'm also sore and tired and I'm going so fast past this entire storeful of shiny and intriguing things that I want to investigate, and anyone who impeded us probably got stressed as they keeled over from the sheer force of Steve's Laser Death Stare With Muttered Cursing.
It was a relief to get out.
However. We did get out, so that's a win. We still love each other and although we were both a little snappy and stressed we didn't have the Ikea Row which I understand to be traditional. We went a little over our one-hour of parking, but we didn't get clamped or ticketed. And, more importantly, we accomplished cushions. Three black cottony ones which match the futon mattress, two massive flame-coloured red-orange soft felty ones which provide a lovely warm contrast, and two cushioned lap-trays suitable for laptops, books, writing or dinner.
(Oh, I also stole a pencil, but Steve says it doesn't count because I didn't mean to - I'd jammed it into my ponytail, which is my standard way of holding on to pens and pencils because they fall out from behind my ear, and then I'd forgotten about it.)
I am extremely comfortable now. But if there's a next time it will involve my own wheelchair, at least one more person, and at least two more hours. Oh, and I'll be frisking Steve for sharp implements and matches.
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