Showing posts with label benefits. Show all posts
Showing posts with label benefits. Show all posts

Thursday, May 31, 2018

Period Poverty

I'm seeing a lot of articles popping up in my feeds this week about period poverty. Most of them appear to be written by people who have never actually experienced it, trying to reduce the issue to whether a single tampon works out at 5p or 50p, and it is grinding my gears.

Periods are not consistent. There is no incredible One Box of sanitary products that covers one woman's needs for one period. You have heavy days, light days. You have times when it's best to use a super plus tampon and an overnight pad both at once, and you have times when either of those products would just be amazingly uncomfortable. It also wouldn't be economical - as a rule, night pads are more expensive than "regular" pads which are in turn more expensive than panty liners, but if you tried to get through a heavy day with just regular pads you'd need to use a dozen of them. To deal with one period, you need more than one product.

Whatever products you need though, even if you only need one of each, you have to buy multipacks. This is the thing really upsetting me about the pennies-per-pad calculations. The only way you can buy one pad, or one tampon, is from vending machines in ladies' loos which, last time I had cause to use one, is £1 a time (and might be more now). In the real world, we buy packs of 14. Or 12. Or 10. Or 50. A challenge for those snide writers of articles sagely declaring that the mega value bundle from UltraPoundwiseUniverse gets it down to a penny per pad: I'll punch you in the stomach a few times, put clothespins on your nipples, and fill your pants with loo roll, raw egg whites, and food dye, and then you can take your calculator on the bus and go shopping around for the best deal, yes? And don't forget, you can't do it while you're at work, and if you're unemployed you've got to fit it around doing your compulsory job applications and you have to take your kids with you.

Don't tell me we should bulk buy ahead of time, either. If you're experiencing period poverty you're likely experiencing other forms of poverty too. Your room in the b&b "temporary housing" does not have a pantry, under-stairs cupboard, loft, basement, shed, or any other storage space. Odds are you can't store anything in the shared bathroom either, even IF it's clean enough to consider doing so (mooncup evangelists, I'm looking at you as well now).

Of course, having bought your packet of 12 pads, you probably will use the remaining 11, because on average, for most people who have periods, it's something that happens almost every month for 30-35 years, for about 6 days in every 28.

But this is where tight budgeting comes in. Let's say it's day 5 of your period, it's light flow and almost over. You need three more pads. You've got two. There is £2.47 in your purse for the next two days. A packet (remember, you can only buy a whole packet!) of regular pads costs about £1.40 at the local shop (it's cheaper at the big supermarket but not if you add the bus fare). Do you (a) spend a sizeable chunk of your remaining cash on a pack of pads when you only need one, or (b) use the two you've got and then do your best with loo roll?

Period poverty isn't just about it costing £120 over the course of a year. When you're in actual poverty a year is an unthinkably long time and even a month is too far off to be planning. All of your Cope is taken up with making it through to the next payday and things that are "only" a couple of pounds might still be a couple of pounds more than you've got.

Tuesday, June 12, 2012

Problem?

The big line being pushed by our beloved government this week is about "problem families" and the need to "crack down" on them. The right-wing press have seized on this, breaking out charming descriptors like "Britain's worst scumbags". There are apparently 120,000 of them, costing Our Brave Nation £9bn every year. Even the supposedly-neutral BBC agrees, although by now their oft-used phrase "according to ministers" basically translates as "you might want to take this with a pinch of salt."

So, what makes a "problem family"? How do we define the country's "worst scumbags"?

Well, that's where it all gets a bit runny. No one's quite sure where the figures of 120,000 and £9bn have come from - those ministers so keen to make these assertions aren't so keen to have their assertions examined and have not been forthcoming with their sources. Fullfact.org have given it their best shot and come up with the 117,000 families in England classed as "Families with Multiple Problems" as the nearest likely contender. The definition of that is clearly set out. An FMP is a family that matches at least five of the following seven criteria:
• No parent in the family is in work
• Family lives in poor quality or overcrowded housing
• No parent has any qualifications
• Mother has mental health problems
• At least one parent has a longstanding limiting illness, disability or infirmity
• Family has low income (below 60% of the median)
• Family cannot afford a number of food and clothing items.

This quite surprised me because by that yardstick, I spent most of my teenage years in an FMP. My mother was not in work (1) due to her longstanding limiting illness, disability or infirmity (2) which meant that once my father was gone, we were a single-parent family reliant on state benefits which were a low income (3). We had difficulty affording proper food (a regular meal was "pasta and gravy", no meat or vegetables, which I didn't even realise was unusual until I was 19) and most of my clothes were second-hand (4). And our house was in a pretty awful state of repair, cracked windows and dangerous electrical wiring being two of the simpler issues (5). Ding, Family with Multiple Problems.

Eric Pickles, the Communities Secretary, has been ranting about these families not in terms of their circumstances, but in terms of their behaviour - crime and social disorder, truancy, alcohol abuse, and "ruining the lives of their neighbours".

Hmm. My sister and I were never in trouble with the police, we always had a parental note on the rare occasions when we missed school, the only alcohol in the house during our teenage years was the occasional bottle of wine given to our mother as a gift, and we got on well with the neighbours on both sides. We performed well in school, engaged in extra-curricular activities, got home by our curfew and were basically normal, boring, well-behaved kids.

Which on one level is admittedly irrelevant. My personal circumstances are anecdote, not data. To examine the data, go back to the Fullfact article, which is excellent in that regard and links back to all manner of primary data sources, and indicates that the number of FMPs which also have children exhibiting problem behaviour is closer to 46,000.

What I can say - anecdotally - is that while my teenage self would have accepted the descriptor "Family with Multiple Problems" as an unpalatable but undeniable truth, she'd be rather upset by the idea that to live with those problems was interchangeable with behaving in an antisocial or criminal manner. When getting home at 5pm after doing her homework on the school computers with a bunch of other kids in similar circumstances, she'd be quite put out by Mr Pickles' view that children like her needed to get their truancy under control. When babysitting, for free, the child of someone who volunteered one evening a week at a social group for people with learning difficulties, she'd be quite angry to hear Prime Minister David Cameron assert that people like her and the person she was babysitting for were creating "a huge amount of social problems, for themselves but also for the wider community".

Please, please, please, can we stop conflating "poverty" and "immorality", "lives with problems" and "is a problem", and "not in paid employment" and "does nothing of any use at all."

Tuesday, May 01, 2012

That's not a compliment

Written for Blogging Against Disablism Day 2012.

Blogging Against Disablism Day, May 1st 2012

I try to keep my personal and professional identities separate. When people ask me what I do, and they are potential friends rather than potential clients, I tend to grin and rather flippantly tell them that I write blethers for other people's websites. That's not all of what I do, not by a long way, although it's the favourite part of my job – it's interesting, I'm good at it, and I often enjoy it. But let's face facts, the question “what do you do?” rarely means “please describe to me in detail everything you do with your day,” rather it means “tell me something that will fill this conversational gap, and possibly help me to build my mental image of you.” Telling them with a smile that I write blethers for other people's websites is a short, good-humoured and effective way of filling this hole with the image of a woman who spends her day working in an office, at a computer, the image equivalent of a Visa card, acceptable everywhere.

What does that have to do with disablism? Well, it's about where the conversation will go from there.

Often people feel compelled to congratulate me. Good ways of congratulating a person include phrases like “Hey, that's great!”, “it must be so rewarding to have a job you enjoy,” or even “I wish I could do something like that!”

Unfortunately all too frequently I hear something along the lines of “Great! At least you're doing something with your time, not like all those lazy benefit spongers, half of them aren't what I'd call disabled anyway, I mean if you're doing it, why aren't they?” Often this is followed by an anti-welfare rant rounded off with a baseless assertion that “most” disabled people “won't even try,” and a final verbal pat-on-the-head to me for “giving it a go.”

TOP TIP. The way to compliment me is not to disparage the entire minority group to which I belong. Treating my work, where people pay me money for my skills, as nothing more than a time-filler is also insulting. Furthermore, it would be good if you can avoid waving around the negative stereotypes and slurs which have been applied to me and my disabled friends on a regular basis for the last few years, and while we're at it, please don't attack the welfare system which quite literally saved my life by keeping a roof over my head and food on my table for the first couple of years when I got sick.

I'm one of the lucky ones, and I don't want the price of that luck to be ignoramuses trying to use me as a stick to beat down the people who have not been as lucky in similar situations.

Wednesday, January 18, 2012

I'm confused by the BBC

The last couple of weeks have seen the Coalition's Welfare Reform Bill (WRB) being voted on in the House of Lords.

There are two main aspects of disability benefits. First is ESA, Employment Support Allowance. This is the money given to people who are unable to work because of illness or disability. Then there is DLA, Disability Living Allowance. This is the money given to people regardless of their income or whether or not they are in work, in recognition of the increased costs that come with disability.

It is possible to get both; it is also possible to be eligible for either one but not the other. I myself get DLA (because I have substantial disability-related costs) but not ESA (because I am working).

Part of the WRB includes plans to replace DLA with PIP, Personal Independence Payments. One of the stated aims of the WRB is to reduce the DLA spend by 20%. Since the DWP's (Department of Work and Pensions) own figures show that fraud is only 0.5%, this means that genuinely disabled people are going to be hit by this - which is why we're all worried.

(Is everyone keeping up with the abbreviations at the back? A cynical person might think that part of the reason for renaming as well as reforming this benefit is to make it far too complicated for the average news column to be able to report on.)

Disability campaigners have been asking for a six-month pause to the WRB so that a proper independent consultation can be carried out, and to start the change slowly with a pilot project to uncover and iron out the teething troubles. We are of the opinion that if the government is going to fiddle about with the benefits that support the most vulnerable, most disabled, and/or most ill people in the country (including many who are terminally ill and only claiming for their last few months of life) they should think really carefully about it and be sure that they will do as little damage to as few people as possible.

Last night, the Lords voted. The government won, by 16 votes, the WRB rattles on to the next stage. The good news is that in order to swing the vote, Lord Freud had to make an awful lot of promises - under oath and on the record - about the implementation of PIP. Our amendments aren't passed, but some of what we were asking for in them has been conceded, and that's more than many of us expected.

What does the BBC have to do with this?

Well, the BBC is confusing me.

First, they ignored the issue. If you were on Twitter, you can't have missed the #spartacusreport hashtag that was top trending in the UK for most of last week. It refers to the Responsible Reform report. Auntie Beeb had time to do all sorts of analysis about middle-class shoplifting, but did not so much as acknowledge our existence.

Then Radio 4's News Quiz did sterling work using comedy to demonstrate exactly how ridiculous the proposals are. Hat-tip to Sandy Toksvig and Sue Perkins in particular.

But from there on in, and in the sections of the Corporation that are defined as News rather than Entertainment, it's been the government line all the way.

For instance, Maria Miller, the person who is laughably job-titled Minister "For" Disabled People, was given unchallenged airtime to claim that Responsible Reform had only used 10% of the responses to the initial WRB proposals. Technically, that's true. There were over 5,000 responses and we only used about 500. Why? Well, the 500 responses we were allowed to use were official responses from "public" people like the Mayor of London (who objected to the proposals on several counts) and organisations like the Papworth Trust, Mind, and Scope (who also objected to the proposals on several counts). The report uses all of the "official" responses to which we were granted access. However, for obvious reasons, we weren't allowed access to the private responses from private individuals. This includes the responses from many campaigners who had written to describe how they, personally, as individuals, would be affected and what their fears were. Yet to hear Miller speak, you'd think we'd cherry-picked a tiny number of supportive statements and ignored thousands of reports in support of the WRB.

Where was the balanced reporting? Where was the skeptical journalist to ask Miller if the thousands of private responses we weren't allowed to use were broadly for or against the government proposals? Why are her vague and often misleading comments allowed to pass unchallenged?

And then this morning, this article (which I'm copy/pasting from in case it gets edited in future, as the BBC often do):
"The government has headed off a House of Lords defeat over plans to replace the Disability Living Allowance.

Ministers want to amend the system to make sure claimants undergo more testing, but opponents say this will mean 500,000 people will lose benefits."


Firstly, the 500,000 losing benefits. The WRB has a stated aim to reduce DLA by 20%. There are 3.2 million people on DLA (source: dwp.research.gov.uk); a 20% reduction is therefore 640,000 genuinely disabled individuals. So we say that the WRB - not the testing - will mean 500,000 people lose benefits partly because it's a nice round number and partly so that no one can accuse us of over-egging the pudding.

Secondly, ministers do not want to make sure we undergo more testing. They want us to undergo different testing (for which they will pay a private company because they think asking our NHS doctors for medical evidence is inappropriate) and they want us to undergo more frequently repeated testing.

We have said that making claimants with incurable conditions undergo frequently repeated testing is a waste of governmental time and money ("no, my leg still hasn't grown back").
We have also said that, particularly with regard to people with mental health issues, too frequently repeated testing causes distress to claimants which may impair their recovery.

We do not pretend, nor have we ever said, that making claimants undergo more testing will mean 500,000 people losing benefits. Those two items don't belong in the same paragraph, let alone the same sentence.

You get the idea. There are scores of examples just from the last two days - far too many to deconstruct all of them. We are not seeing balance from the BBC. First we were dismissed and ignored, now we are being misrepresented as ill-informed scare-mongerers making disjointed and illogical claims that we have never made, while Miller and her ilk are permitted to broadcast spin and propaganda that the WRB itself and the DWP's own statistics disprove.

The reason I feel upset by this behaviour from the BBC when I can usually ignore it from the Daily Mail is the same reason why I feel more betrayed by the 65 Liberal Democrat lords who voted with the government than I do by the 150 Conservative lords. When people or organisations behave in the way you expect, it doesn't bother you - but when people or organisations you believe in let you down, it stings.

We don't expect the BBC to support us, but we expect neutrality, balance, investigation, factual reporting. We're obviously upset that the Lords' vote went against us, but the way the BBC are treating and portraying us only increases the negative image of disabled people and adds insult to injury.

Friday, November 04, 2011

Disabled, not dead

Yesterday, my Twitter feed was alight with people being gobsmacked by the content of Panorama's so-called "investigation" into benefit fraud. Interestingly, I understand that neither of the major culprits "investigated" and plastered across the BBC's prime viewing have actually been charged with benefit fraud. More worryingly, it appears that several of the activities the "investigator" took umbrage with weren't actually activities that would preclude a benefit claim...

I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.

But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.

Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*

Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.

Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?

Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".

We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.


* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.

Tuesday, August 30, 2011

Restrictions Apply

Sometimes I find it quite difficult to use social media, as a disabled person. Not so much on a technical level, as on a privacy level. How much can I share with which people? How can I try to be sure no one gets the wrong end of the stick?

As a recipient of certain kinds of disability assistance I have to be aware that I may, at some point, be the subject of an investigation without my knowledge. That's not paranoia; the DWP quite openly advises that (over and above investigations of individuals reported as potential fraudsters) it regularly carries out checks on random samples of claimants. I'll be surprised if, in 2011, this doesn't include checking social media use.

I have nothing to hide. However, social media centres around succinct postings. Twitter is the extreme example at 140 characters, but even where there isn't a limit, it's not the done thing to leave a comment on someone else's blog that is 500 words long. How can I possibly fit in all the explanations and circumstances about how I manage to do something despite my limitations? Attitude plays a part as well. If I'm posting about having gone out somewhere with friends, my readers don't want to read, and I don't want to write, a post detailing which joints hurt and what kind of headache I had and how many times I had to stop and rest, that's just depressing!

My posts and tweets aren't earth-shatteringly important, but here's an example of what I mean:

What I want to tweet:
"Steve and I went for a nice walk round the block this evening."
What I feel I should tweet to avoid accusation:
"Steve pushed me in my wheelchair around the block this evening."

What I want to post:
"I had chicken primavera for dinner. Never had it before but it was really nice. It's chicken, pasta, mushrooms and veg in a creamy sauce."
What I feel I should be adding lest the DWP are watching:
"I had chicken primavera for dinner. It was a ready-made microwave meal because of the difficulties I would have with preparing such a meal from scratch. I had to sit down while the meal cooked. I ate the meal sitting at the kitchen counter because I was unable to carry it through to the main room without dropping it. The meal was only in my house in the first place thanks to the wonders of online shopping."

What I want to blog:
I went into town by myself! I bought X, Y and Z! I had cake! I feel very proud of myself!
What I feel I should add for the benefit of anti-fraud units:
It was the first time I left the house in a month without Steve right there next to me. I had difficulty getting a wheelchair-accessible taxi. I bought a coat in the sales but I could not try on any other clothes because I lacked the energy and co-ordination to safely get changed by myself in unfamiliar surroundings. My pain levels were high and the medication I took to relieve the pain had the side effect of making me feel very dizzy and sick. At one point I became lost despite the simple and familiar layout of the town centre. Despite purchasing and consuming a sugary snack in the hope of boosting my flagging energy, I was unable to accomplish all the tasks I had wanted to because I was too exhausted. Staff in the final shop I visited were concerned about how ill I looked. When I got home I had to nap on the sofa.

You see what I mean? The positive stuff is true. The negative stuff is true. They don't contradict each other if you know the full story, if you know me you can see how they mesh together. But if you were only reading one side of it, you'd think I was either fit as a fiddle, or the world's worst whinger.

I'd be interested to know how other disabled people manage to hit the balance between staying positive online, but not jeopardising their DLA.

Wednesday, July 27, 2011

Repeat

I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:
  • If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.

  • If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.

  • If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.

  • If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).


Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:
  • 7% were incapable of any work (Support group)

  • 17% were able to do some sort of work given the correct support (Work-related activity group)

  • 39% were deemed to be fit for work and were moved onto jobseeker's allowance

  • 36% dropped out of the application process

  • 1% of applications were still in progress


Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".


I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

Friday, April 22, 2011

Deserving

A lot of hoo-ha in the UK press at the moment about disability benefits. The essence of the story is that the government reckon 80,000 claimants who have what they consider "immoral" illnesses like drug/alcohol dependency or obesity are a justification for their plans to chuck about 570,000 genuine claimants off the disability benefits on which they depend.

According to the BBC article, the Prime Minister's position is thus:
The prime minister denied the government was stigmatising people who were genuinely ill but said the public believed recipients should be "people who are incapacitated through no fault of their own".


No fault of their own, what a strange concept. Does the man intend to start assessing not only the practical limitations of a person's condition, but also the degree of fault involved?

He continues:
"But there are some who are on these benefits who do not deserve them and frankly we are not doing our job looking after taxpayers' money if we do not try and make sure these people go to work."


Benefits are not given based on being deserving. They are given based on need. Going to work or not isn't based on being deserving. It's based on ability. An idiot who drove while high/drunk/ill/tired and smashed up his car and his head so badly that neither will ever function again is probably not considered very "deserving", but his needs will be pretty high and he's unlikely to work again. A young fireman who lost a leg while saving a helpless baby from a burning building is about as deserving as they come, but his needs, while substantial, will be easier to adapt for, and with a relatively small amount of equipment and support the chances are he will be able to do some work.

I wonder... if someone were declared Fit For Work despite a serious health condition, and in the course of making the effort to keep up with the Mandatory Work Related Activity requirement of JSA, their condition permanently worsened to the point where even the DWP and ATOS accept that they are too ill to work - would it be their fault for not saying "I can't do this," and risking having their JSA stopped?

Even taking the sort of example that I think the government mean, it's worrying. Let's imagine, for a moment, that we have a claimant, an alcoholic, and that his alcohol dependency didn't evolve as self-medication for a pre-existing but untreated mental health condition. Let's accept the government assumption that he really did skip gleefully out of the careers office at school saying "I've got a better idea, I'll get pished and the taxpayer will take care of me, bwahahahahaha!" Fixed this in your head? Good.

Now we're twenty years down the line, he has no friends and family left apart from other alcoholics, no work history, very few self-care skills, and all the physical and mental effects of long term alcohol abuse, which if you're not too squeamish you can look up for yourself. There are very few jobs that such a person could do, and even fewer employers who would take such a person on. Then what happens?

Cameron's despicable lie is that his ideal outcome involves people with dependency issues being treated and then helped to find jobs. That will never happen. It is far too expensive, and without wishing to sound defeatist, in many cases it's an impossible outcome.

We could put him into a treatment programme - one that isn't dependent on turning up sober (unlikely), and that won't send him back to his bedsit and alcoholic pals to undo all the work that has been done (so we're looking at an open-ended residential placement - unlikely, and extremely expensive). Then once he's sober, he'll be allowed to access NHS treatment for the underlying mental health conditions that will have developed (unlikely and expensive) and the physical damage as well (amazingly expensive). We'll have to hope that during those years - yes, years - the DWP don't choose him as an easy target and put him under so much pressure that he cracks and starts drinking again. Eventually, after many years of intensive treatment, a lot of money, even more hard work, and a dollop of luck on the side, he might be able to re-enter some sort of employment for a few years until he (a) retires, (b) dies of the irreversible physical damage, or (c) falls off the wagon again.

Cynically speaking, and please don't think I'm advocating this, it is in fact cheaper to allow him to quietly drink himself into an early grave without intervention.

Cameron might talk up "treatment" and "employment" but until we see actions to that effect - boosting rather than cutting the support projects* - what he really means by "getting people off disability benefits," is saving money by consigning them to the lower unemployment benefits.

The benefits system is supposed to be the last safety net. It does not provide a luxury lifestyle, it doesn't try to improve matters, it merely attempts to go towards providing what has been defined as the minimum amount of support necessary for that person to live in conditions that can be considered acceptable for a human being. Reducing that support does not propel people into sustainable jobs, it just makes their lives more difficult and in many cases perpetuates their problems, or in a few very sad cases, hastens their deaths.

*Yes, the article speaks of a £580m investment. However, this is from "private and voluntary organisations", eg not the government, and frankly it's a drop in the ocean compared to the cost of effective long-term treatment and support for that many addicts.

Saturday, February 19, 2011

To err is human...

... but if you do it on DWP forms, you can expect a fine.

A £50 fine, to be precise, although that's just a starting figure. It could be as much as £300.

Apparently the point of this fine is to get claimants to take "responsibility" for their claims, because "I have to fill in this form right or I won't have any money for rent, bills or food" doesn't have enough impact on your life to make you take it seriously. Or something.

Leaving aside the class war bit where a bunch of millionaires (who make plenty of "mistakes" in their own benefit claims and consider £50 to be the cost of lunch) are imposing these fines on DWP claimants who are, for obvious reasons, some of the poorest people in the country for whom £50 is two weeks' groceries or more...

I'm reasonably bright. Not exceptionally so, but I have my selection of higher-tier grade GCSEs including English and Maths, I've been able to read and write since before I started primary school, most of the jobs I've held have had some sort of administrative element. I should be as well-equipped as anyone to fill out those forms correctly, and I have a distinct advantage over many claimants who are less academically inclined.

And I have made errors on my claims.

The first one, was when I first got sick and lost my job. Let's set the scene. I'm in my early twenties. I'm sick, so sick I cannot work, and more or less confined to bed so that I can manage the big bursts of effort needed to go out (I haven't yet been taught about pacing). I don't yet know what's wrong with me, so I'm scared. I have no income and the Jobcentre have given me three forms. The biggest one is for Incapacity Benefit. The next biggest is for Housing and Council Tax Benefit. The smallest - which is still some thirty or forty pages - is for Income Support, which I am told is a "safety net" in case my Incapacity claim is rejected.

Bear in mind the reason for my claim was that I was too sick to work in my mostly office-based job. I had something symptomatically akin to 'flu. I was not in a top form-filling state.

I worked on the forms as best I could. By the time I got to the IS one, time was running out, but I did my best and felt quite proud of myself for finishing it all within the deadline.

My mistake? In the Pensions section. Having ticked that no, I was not in receipt of any pensions, I was told to go to the next section of the form. So I skipped over all the questions about what type of pension do you have to the next section of the form, About Other Benefits. What I missed, was that "War Pensions", although tacked onto the end of "Pensions", was in fact a section in its own right - a one-inch strip with the single question are you in receipt of a War Pension and Yes/No tickboxes. The form was sent back to me, red-penned and with a stern letter of admonishment.

I've also made errors on my DLA forms before now, again usually at the level of missing a tickbox, although thankfully I've always caught them before sending.

The BBC article says:
The proposals also reveal that the government assumes there will be very few appeals against these fines.

Well, yes. If my incorrectly completed form and nasty letter had also included a £50 fine, I certainly wouldn't have had it in me to argue the toss, because I was too sick to do so, and THAT was the reason why I was filling in the forms in the first place.

That's the thing about benefits. You claim them when your life gets to a desperate stage. You're sick, perhaps terminally so. Your spouse has emptied the joint account and run off with So-and-so from Marketing, leaving you with a broken heart, no money and two kids who want to know where Mummy/Daddy's gone. You've finally managed to get up the courage to get out of a violent and abusive relationship even though you took nothing with you other than the clothes you stand up in. At the very least, you've lost your job. You're stressed. You're upset. You're running around trying to improve your situation and get back something which is recognisable as Your Life, whether that means you're attending countless hospital appointments or applying for countless jobs, and on top of this, the Jobcentre have presented you with over a hundred pages of forms to fill in?

And while we're at it, let's not forget the cuts to legal aid and the closures of Citizens' Advice Bureau offices which will make it even harder for people to get help filling in forms or conducting appeals. Nice one, George. Withdraw the support, thereby increasing the rate of mistakes, then charge people for those mistakes on the basis that they'll be unable to argue. It would make a wonderful Dilbert cartoon, if only it weren't targeted at real and vulnerable people at their time of need.

Minor mistakes are inevitable when people in these circumstances are filling in these forms. Fining people who can't afford to pay but aren't in a position to defend themselves, is appalling.

Saturday, January 01, 2011

2010 - A Roundup

January
My PA having left on maternity leave in mid December, in January I began working with a new, temporary, cover PA. I had another ATOS medical examination for my DLA renewal which went about as smoothly as these things can. I gave up on the business support organisations that had been messing me about and got in contact with The Prince's Trust, who were much more positive and useful about things, and helped me to write a business plan.

February
On February 5th I took the plunge and declared my little business “open”. Obviously there was a lot still to be accomplished in terms of developing and marketing, but it meant I was able to start invoicing and earning little bits of money from clients I already knew. As if in reward for taking the plunge, I found out that following my medical I had been awarded DLA “indefinitely” which meant it would likely be several years before I had to go through the process again.

Then, just when I thought life couldn't get any better, Evilstevie whisked me away for a surprise Valentine's weekend, and pulled off the most beautiful, geeky, romantic proposal I ever could have wished for with twitter, automated computer activities, stunning scenery, photographs throughout, and a gorgeous diamond ring. I said yes.

March
Since this was not a proposal for the sake of being romantic, but a real engaged-to-be-married one, wedding planning started with looking at potential venues and crunching through lots of brochures. At the same time, with the business “open” and a business plan completed, I was able to properly apply for, and was assessed and approved to receive, practical and financial help from the Prince's Trust, as well as Access to Work support in the form of an appropriate powered wheelchair.

April
This April I got very much into an online event called Such Tweet Sorrow - Romeo and Juliet, set in the modern age, with the core characters “acting” in real time by posting tweets, blog entries, YouTube videos and other interactive media. Usually you go to a theatre and suspend disbelief for two hours, but this was five weeks of having six additional people popping up in my twitter feed at all hours of the day and night, and audience participation was encouraged and responded to in character. This meant that the fictional, scripted characters were just as “real” to me as many of the people I interact with online in my wider social circle.

Meanwhile the business was still at a stage of mostly waiting on other people, and the wedding planning was at a level of research research research.

May
As usual, May opened with Blogging Against Disablism Day. Becoming increasingly immersed in wedding planning, my post was entitled It's Not Bridezilla To Want Access and highlighted the ignorance shown to disabled brides by the wedding industry. On a happier wedding note, we picked a date and a venue.

I also went to vote - not that it's done any good - and the Such Tweet Sorrow event reached its conclusion.

June
In June the Awesome Wheelchair was delivered and the world opened up for me. Steve was taking a holiday from work and we were able to go on many days out to properly enjoy the summer sunshine, and even took a short trip back to Lowestoft to say hello to everyone there.

June also saw the beginning of an amazing government-backed propaganda campaign against disabled people which laid the groundwork for the increasingly severe cuts to essential services that have been being announced ever since.

July
In July we officially gave our notice to get married, which is an interview where they check all your documentation to make sure that you are who you say you are, and you're eligible to get married in the UK. We also booked our bouncy castle, started buying pirate accessories, and made our Save The Dates.

August
Another wedding-focused month. I learned how to make balloon swords, because we don't want any injuries from people bringing their own wooden/plastic/metal ones. I also went dress-shopping with Steve's mother, which was an accessibility nightmare but happily resulted in the purchase of a lovely dress at a reasonable price.

September
In September I decided to start working on layouts and discovered Google's SketchUp software. I got a bit carried away, which means that yes, on the one hand, we have a to-scale representation of the reception building, with the correct number of to-scale chairs and tables and other items of furniture, all based on real measurements, which can be moved around to try out lots of different ideas. On the other hand, it means I sunk several hours into it and now have what might be called an excessively accurate 3D colour model of all indoor and outdoor areas when really, a bit of graph paper and some post-it notes would have probably sufficed.

Away from the wedding front, I went to the Food Festival with my PA, and had a wonderful time browsing around and enjoying the atmosphere. And Carie knitted a baby!

October
In October the attacks on support and welfare for disabled people became even more definite in the Comprehensive Spending Review. One of the most shocking cuts being made is the withdrawal of DLA Mobility from people living in care homes. We also saw the severe restriction of the Independent Living Fund (with a view to its closure in the next few years), the restriction of contributions-based benefits to a period of one year, shuffles to Housing Benefit which will see many vulnerable people being split off from their informal support networks of friends and neighbours, and drastic cuts to local authority budgets which are having a direct impact on Social Services.

Due to my privileged position as the de facto housewife of a man who earns enough money to keep a roof over our heads, petrol in the car, and food in the cupboards, I am not as severely affected as some. However it is no exaggeration to say that my independence will be affected, and that if I was still on my own, it wouldn't be a question of independence or of quality of life - I would be struggling to survive, and many other people aren't as lucky as me.

November
In November Steve took a permanent job, as opposed to the contracting work he has been doing so far. It has been taking some adjustment to get used to, but it is in many ways a relief to have a regular and predictable income and it has enabled us to push forward with a few more aspects of the wedding planning. My maid of awesome, Jiva, came to see us for a visit and we arranged the cake, tried on the dress again, and made a bit more headway with the planning.

Every 2011 bride I know held their breath as Prince William and Kate Middleton announced their engagement. Eventually they named their day and along with many others I breathed a huge sigh of relief that it wasn't going to clash (and my phone buzzed with “thank goodness! not your date!” messages). We must feel sorry, though, for the people who had already planned to get married on 29th April, who are now wrangling with Bank Holiday issues, London transport/major event issues, and the risk of being rather dramatically upstaged.

December
Early December saw the arrival of Pip's new Littlun (actually a Littlunette) who I am looking forward to meeting at the wedding if not before. As usual, December was largely focused on steering Steve and myself through Christmas. We got off to a flying start - the cards were written and 90% of the presents wrapped before the halfway point - but then illness and weather started to interfere, with the result that our final Christmas card was only delivered on New Year's Eve and we still have a present lurking under the tree. I've also had PA problems - the young lady who went on her maternity leave last year didn't come back, but she also didn't resign or let me know what she was doing, so I'm grinding through the disciplinary process which is a whole drawn-out procedural mess of formal letters and hearings and paperwork that I could have done without. I also found myself writing a guest post for Where's the Benefit when David Cameron made his priorities clear in a sickening if predictable way.

Nevertheless it was a very enjoyable Christmas. We saw in the New Year with friends (although, unusually for us, without fireworks), and we're confident and ready for 2011.

Tuesday, November 30, 2010

Keeping Warm

I just got my blog stats and found that a lot of people have been turning up here looking for information about help with heating bills.

So, I thought I'd do a recap with information and useful links double-checked for 2010.

There are two types of help with winter heating. One is the Winter Fuel Allowance, the other is the Cold Weather Payment.

The Winter Fuel Allowance is a one-off tax free payment of between £250 and £400 per household. It is paid to everybody over the age of 60 who is normally resident in the UK. It is not means-tested and payment is automatic (Peter Stringfellow got some cheap headlines by offering to give his back). Recipients don't even have to be living in the UK during the winter - it will still be paid automatically even if the recipient is a millionaire who decides to go on an extended holiday in warmer climes for the next few months.

Winter Fuel Allowance is NOT paid to anybody under the age of 60 in any circumstances.

The Cold Weather Payment is a bit more complicated. It is a payment of £25 paid out to eligible people if there is a "period of very cold weather", which is defined as when the local temperature is recorded as below 0 degrees Celsius for seven consecutive days.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment will be made. People do not need extra heating in this circumstance as this is not considered by the government to be a period of very cold weather.

You can find out whether the government thinks your local weather has been Very Cold by using this handy DirectGov tool. Just type in your postcode and then click on the orange "Submit" button that is down and to the right.

My postcode is deemed to have had one period of Very Cold Weather during November. However I'm not eligible for any payment. You see, eligibility is rather more complicated as well.

The over-60s on pension credit get it, on top of their Winter Fuel Allowance. From there on in, it's breadline only. People on Income Support or Income-based Jobseeker's Allowance may be eligible if they also have a disability or pension premium, a disabled child, or a child under five years old. It is also available to most disabled people on Income-based Employment Support Allowance.

It is NOT paid to people on contributions-based benefits, nor is it paid to people on benefits like Disability Living Allowance or Working Tax Credits of any kind, unless they are also on those named income-based benefits and they meet the additional conditions described above.

Both types of payment are automatic - if you are eligible for it, it will be paid. The unfortunate news is that unless you're over 60, you're probably not eligible for anything.

Wednesday, October 27, 2010

Abandoned claims

Woke up this morning to see that a certain right-wing rag has surpassed itself in the propaganda it chooses to spout about ESA.

I'm not going to link to it because it will only upset me and every reader.

The headline asserted that 75% of those who claim ESA are found "fit to work".

This was then broken down that 75% of those who claim ESA were either found "fit to work" or abandoned their claims before testing was complete. The article did not split these figures. It did not differentiate between the Support (never likely to be able to work) group and the Work-Related Activity (may, with help, be able to do some jobs) groups of ESA - from reading the article it seems that they are only counting those who meet the Support group test criteria as "genuine". It proposed that the abandonment of a claim meant that the claimant was clearly "trying it on".

Legitimate reasons why an ESA claim may be started and then abandoned:
  • The claimant dies.

  • The claimant gets better, be it a miracle or a new treatment or being bumped up the waiting list for surgery or getting private treatment.

  • The claimant, having lost their job, is offered support and a place to stay by their parents or their children. They decide to abandon their claim and re-start it once their move is complete.

  • The claimant looks at the highly personal questions on the form and says "you know what, I'll never be this desperate for money, prostitution is less demeaning."

  • The claimant wins an insurance or compensation payout that enables them to survive without benefits.

  • Due to their condition, the claimant is unable to understand the importance of filling in the form or unable to remember that the form needs doing.

  • Due to their condition, the claimant is unable to fill out the forms - perhaps they have a brain injury or learning disability and cannot read and/or write, perhaps they have issues with their hands and cannot physically hold a pen, perhaps they have a mental health condition that causes panic attacks every time they approach the form.

  • Due to their condition, the claimant is unable to access support to fill in the forms - for instance they are unable to go out, they do not yet have formal Social Services support, and their CAB is overstretched with permanently engaged phone lines (I have personal experience of urgently needing to get to the CAB but having to wait until support is available).

  • The claimant completed the form, but due to their condition, they are unable to travel to and from the medical examination centre alone, and they are unable to secure help and/or funding to allow them to attend. Because their level of impairment does not exist until ATOS say it does, this is not a valid excuse for non-attendance. (I had this issue with my DLA a few years ago).

  • The claimant is sitting at home with the heating off, desperately waiting to hear back from the DWP about their claim, which the DWP has lost.


If it was any other publication (I hesitate to use the term "newspaper") I would be shocked and appalled by the deliberate lies and misinformation being used to attack disabled people. Unfortunately, I'm getting used to it, and so is everyone else, and all these little drops of poison are being allowed to drip on into the public consciousness unchallenged.

Saturday, October 23, 2010

If you want to imagine the future...

In my last post I spoke about how, thanks to my particularly fortunate circumstances, I should not be too severely affected by the proposed cuts in the Coalition's Comprehensive Spending Review.

I wrote that in the same frame of mind as a parent might hug their warm, safe, living children after hearing about a fatal school bus accident. It's okay. I'm okay. The bad things happened to someone else. It's terrible, but it was someone else.

That emotion dealt with, it's time to acknowledge that I am not so unaffected as I would like to believe. This is difficult for me to post as it involves hard truths not just about my condition but also my business and my relationship, but Bendygirl's video has persuaded me that it needs to be said.

Hard truth #1 is that I am dependent, physically and financially, on my partner. I contribute to the household in the ways that I can, but ultimately, he's providing for me.

I work, yes. I worked for a company for just over two years and now I've been self-employed for about eight months. I have a growing base of satisfied customers, I pay National Insurance, I will be doing a tax return, and each month, the business expenses are met with a bit left over. Go me!

Unfortunately, much as I hate to admit it, hard truth #2 is that the bit left over isn't a very big bit, and nor were my earnings while I was PAYE. It's always been well under £8,000 per year. I simply can't work very many hours and I'm not in a position to raise my rates.

So the long and short of it is that if my relationship fails, meaning that I am no longer housed and supported by someone else, I will have to wind up the business and seek help from the state until such time as I am able to find employment that pays enough for me to live on without demanding more than I am physically able to give.

A lovely big squishy truth now - my relationship is fine. That's why we're planning a wedding. Excuse me while I cuddle that truth for a little while.

I do feel, though, that part of what makes the relationship fine is that we both know we could leave at any time. I'm not with him just because he can pay the bills. We started our relationship in the knowledge that we can both survive as single adults - we choose to be together, every single day. It's not nice to think of exit strategies, but at least I knew that if something unthinkable happened - for example, if he were to hit me or to announce that he was leaving - I would be able to get a taxi to a friend's house and then start phoning Social Services for support. I would be able to claim money for food on an emergency basis, I would have a few hundred quid in savings to see me through for the first week or so, I would have help to apply for income replacement benefits, and thanks to my DLA status I would have to be put in appropriate accommodation.

This is no longer the case.

The Coalition are aiming to reduce the number of DLA claimants by 20% (600,000 people). That's all very well, but the rate of fraud on that particular benefit is just 0.5% (about 15,000 people), which means that there are 585,000 people who are legitimately claiming, whose conditions have not changed, and yet who are going to get kicked off a benefit which is frankly a lifeline. Believe me when I say the bar is already set quite high for who can and cannot get DLA - it's not awarded for minor illnesses. Remember the official disability facts and figures? There are 11 million disabled people in the UK and yet only 3 million of them get DLA. Long-time readers will remember all the trouble I had with my DLA appeal a couple of years ago. Spending the best part of a year trying to fight the system while also trying to cope without the money. It's not to be had for the asking.

(It should also be reiterated that this shifting of the goalposts purely a cost-cutting exercise. DLA has nothing to do with whether a person works or not. Many DLA claimants are in work and paying tax. In many cases, it is their award of DLA that allows them to buy the care and equipment that enables them to continue working.)

If I were to lose my DLA, it's not just the money that would disappear. All sorts of things go with it - daft stuff you wouldn't necessarily think of, like help getting your water if there's an emergency and your street is put on a standpipe, or eligibility for things like Disabled Person's Railcards.

Let's be positive, though, and assume I keep it. Next, I'd need income replacement benefit. This would be ESA, the benefit that is being phased in to replace the old Incapacity Benefit. ESA divides into two groups. One is for people who are never likely to be able to work - mostly people with terminal illnesses with only a few months left to live. This group get full and unconditional benefit for as long as they are ill (in other words, until they die or a miracle occurs). It's a small group - currently about 6% of claimants. The other group is for those who, with support, would be capable of some work, and their receipt of the benefit is dependent on them fulfilling "work-related activities" such as voluntary placements or work experience placements...

Actually that's not quite true. There's a third group for ESA. The third group is those very definitely disabled people whose conditions don't quite fit the boxes. Those with fluctuating conditions. Those who would be considered capable of "mobilising" fifty metres if they had an appropriate wheelchair, even if they do not in fact have such a wheelchair, nor any way of obtaining one. These people are put onto normal Jobseekers' Allowance with all the hoops and hurdles thereof, and drop out of all disability monitoring at the DWP. No specialist support. No reasonable adjustments. Just sanctions if you do not sign on or if you do not apply for enough jobs.

Assume, then, that I would get either work-related activity ESA, or that I would be discarded onto JSA. Finally, I have to find somewhere to live, and this is where it gets really tricky.

First of all, as a person under 35 I would only be eligible for a room in a shared house. Sharing a house is a tricky prospect for a disabled person. You need the people you live with to be able to understand about your disability. You need them to understand, even when drunk, that your mobility aids and assistive items aren't their toys and that you really do need a proper sleep schedule. You need to be able to get help to fulfil your share of the chores, and Social Services do not provide help with housework for people who live with "able-bodied adults". I wouldn't last five minutes.

Of course, you also might need certain adaptations to the property. That's expensive and I doubt councils will fund much of it. So maybe that would mean not having to enter a house-share because it's not physically appropriate. Which means we're looking at temporary accommodation in (a) a hospital or (b) a hotel with an accessible room. It could happen, but it'd be expensive. Perhaps a better solution would be care homes? I don't require nursing care, but it would be a room, and it would be accessible, and the other people would understand my situation.

Heh. Well, yes. That's a solution. It's already a solution for many people. Live in a care home. They remove all your income replacement benefit, and they remove all of your DLA care component, and then they give you £20 a week of "pocket money" to cover anything that's not basic food and bills. Shampoo, conditioner, deodorant, makeup? Pocket money. Clothes and shoes? Pocket money. A laptop computer to enable you to communicate with the world? Pocket money. These things could be considered luxuries, but would YOU employ someone without them?

DLA mobility component is different. People can use that however they see fit. Some people hand it all over and get a leased Motability adapted vehicle. Some people use it to hire or purchase a mobility scooter. Some people use it to cover the difference between what the NHS will pay for a wheelchair, and the price of a wheelchair they can actually use. Some people pool it with others in their care homes to fund an accessible minibus. Some people keep it and use it for taxi fares so that they can do things like, ooh, go into town and sign on or do Work Related Activity as part of their ESA/JSA requirements.

The Coalition intend to axe DLA mobility component for people in care homes. Adapted cars, taxi fares, and in many cases, wheelchairs, GONE. When challenged, the government said that local authorities should be providing transport and daytime activities for disabled people in care homes. These would be the same local authorities who have been told to reduce their spending by 25%...

So if the Coalition's plans are successful, then for the next seven years at least (until I am 35), my choices are to stay with Steve, or to attempt to bounce on a welfare safety net that will be so small as to be negligible. Can I still honestly say that we live together out of choice, when my best case breakup scenario will be either virtual imprisonment in a care home, or living out of a suitcase in a cheap hotel? Ironically, the additional pressure this puts on my relationship only increases the chance of it turning sour. And since neither of those situations are going to enable me to pick up the threads of my life and move towards getting back into employment, it makes me even more likely to remain benefit-dependent for longer.

I say again, for myself as much as for the people reading this, that my relationship with Steve is stable and loving and going nowhere. In that respect I am more lucky than many disabled people who find themselves increasingly dependent on their partners. But one thing you learn with adulthood-acquired disability is that life can change in an instant - I'm scared that the safety net which caught me once, and which I may rely on to catch me again, is being removed.

Thursday, October 21, 2010

Cuts

I want to post about the cuts made in the Comprehensive Spending Review yesterday.

I'm not doing so well at the moment, so for the sake of spoons this is going to be short and based on my own experiences rather than linking to statistics and documentation. That in itself is part of what makes the cuts to disabled people so underhanded - we're not all able to fight back in a planned, structured and comprehensive manner.

Personally, at this point in my life, I probably won't be too badly affected for a couple of years. Oh, there are things that I should have that are now disappeared into the long grass, but my extremely fortunate circumstances mean I am not being thrust into heat-or-eat poverty. I know just how lucky I am and I know many others will not be so lucky.

What happened to me was not unusual. One week, I was a reasonably healthy, reasonably fit, reasonably bright young woman with a reasonably well-paid job, reasonable promotion prospects, living in a small but reasonably pleasant bedsit flat and, all in all, living a reasonable life. The following week, I was being sent home from work with what was assumed to be 'flu. Three months and half a dozen failed attempts to return to work later, I was being prepared to accept that my illness might be rather more long-term, and three months after that, my work contract was ended and I was obliged to claim welfare benefits to survive.

I did survive. It wasn't without difficulty, what savings I had were eroded, and I don't know how long I would have kept it up - let's not pretend we lived like princes under New Labour - but I had practical support, an intact National Insurance record, and the wherewithal to challenge the DWP when they cocked up their own rules, and so here I am. I landed on the welfare safety net, but I bounced, and a few years later with a lot of help from loved ones I was able to start earning again.

However I feel very sorry for anyone who goes through that same not-unusual scenario with ESA (thanks to Labour for that) and the cuts proposed by the Conservative/Liberal alliance yesterday. I would not have survived.

The harshest cut? Removing DLA mobility allowance from disabled people who live in residential homes. This is the money that goes towards the difference between what the NHS will pay for a wheelchair and what a suitable wheelchair actually costs. This is the money that pays for taxis to visit friends and family. This is the money that residents pool together to get an accessible minibus for their home so that they can have trips out. I do not understand the rationale for removing it.

Sunday, September 12, 2010

The Hawking Comparison

As the government's attacks on welfare claimants increase, stupid and offensive comments about disabled people are being repeated more and more often. The one which is bothering me today goes something along the lines of:
"That Stephen Hawking bloke earns his own living, therefore benefits should only be given to people who are more disabled than he is."

Yes, that Stephen Hawking bloke does earn his own living, and all power to him for that. However:

1. He is a bona-fide 100% genius, and was already recognised as a genius before his illness was affecting him.

2. Quite possibly because of that genius, he has had access to custom-made adaptive and assistive technology FAR above and beyond the norm. Professor Hawking was using technology in the 80s that is not necessarily available to people with the same condition even today.

3. If the genius aspect was removed - if instead of being Professor Stephen Hawking, PhD, CBE, FRS and however much else of the alphabet you feel like adding, we just had Steve Hawking with seven mediocre GCSEs from the local comp and a bronze swimming certificate - how employable would he be? If the man who holds the workings of the universe in his head were to express an interest in coming to give a lecture at your nearest college or university, it's a fair bet that they would scramble to provide wheelchair access to as much of the campus as possible and make every other adjustment asked for in terms of allowing extra time, ensuring appropriate parking space, and whatever else is in his 'rider'. Would they do the same for someone who had applied for the minimum-wage caretaker's position?

Professor Hawking is a remarkable man and as such he is the exception, not the rule. The only possible answer to "Stephen Hawking has a job, why don't you?" goes something along the lines of "Stephen Hawking has written several best-selling books explaining scientific mysteries which have baffled the finest minds for centuries - why haven't you?"

It's one thing to aspire to the achievements of the most amazing people ever to have lived, but quite another to take them as a benchmark for what is expected of us.

Wednesday, August 11, 2010

Credit profiling and benefit claimants

I'm sure everyone has by now seen the articles about David Cameron's latest crackdown on benefits claimants, with plans to pay private companies to rummage through claimants' accounts. I'd refer to his crackdown "on benefits cheats" but that's not really true - benefit fraud, particularly for disability benefit, is at less than 1%, which means that for every one fraudster he cracks down on, 99 genuine claimants, already dealing with poverty, sickness, disability, job loss and whatever other issues have led to them legitimately being on benefits, are being terrified and harassed. He's attacking claimants.

More money is lost through administrative error than through fraud. So it's interesting that Mr Cameron's plan of attack involves rummaging through the personal affairs of claimants rather than training his staff at the DWP and Tax Credits units to make fewer mistakes. Surely staff training is cheaper than investigating millions of claimants?

According to the Citizen's Advice Bureau, there's about £17bn of benefit that is unclaimed because people either don't know they're entitled to it, or can't deal with the application/appeals processes. Perhaps Mr Cameron is aiming to increase the unclaimed benefit with his campaign of "if you claim anything, we're going to have our grubby little paws all over your bank accounts and make your life a misery."

I'm very relieved to not be on means-tested benefits any more (I get DLA but that's for disability-related expenses such as mobility equipment, and not dependent on earnings or work status), as I almost certainly would have had a credit profile with red flags. The most regular things I bought on my credit/debit cards while living alone on IB and HB/CTB were:

- grocery shopping for more than one person and including baby stuff like clothing, food and nappies. (While I lived in Lowestoft, friends who drove would give me a lift to the supermarket. In order to take advantage of multi-buy offers and "spend £100 and get a voucher for cheaper petrol" offers, I'd pay for all our combined shopping in one go on my credit card, and then we'd split it up and sort out the cash when we got home.)

- lots of petrol, plus various car repairs and accessories. (I can't drive, but I often bought petrol for friends who drove me places and wouldn't accept any cash, and for Pip I also covered minor repairs on his car because without it I lost a lot of mobility).

I'd also occasionally buy larger or more expensive items for friends who didn't have the credit card/internet access combination at their disposal. They'd give me the cash, I'd order their (whatever), and it would be delivered to my address - because I was in most of the time anyway, and unlike the post office, they could collect from my flat outside working hours.

So I probably credit-profiled as a car owner/driver who shopped for a household of two or three adults and one or two young children and who had a reasonably high amount of disposable income for personal electronics. Which would be rather at odds with my claim to be a single disabled person, in a tiny one-bedroom flat, too ill to drive, no kids, and a low income.

It's just as well I'm not on IB any more otherwise they would have wasted a *lot* of time investigating me. But these sorts of informal money-saving measures are common amongst people on low incomes or with limited resources.

The other thing that tickled me was the idea that they will be looking for people spending money on gardening or DIY. You show me a person with a long-term medical condition and I'll show you a person who has been told by at least three medical professionals that they should try a spot of gardening by way of occupational therapy.

Thursday, June 24, 2010

Budget 2010: DLA

Earlier this week, the new coalition government laid out their emergency budget. Many key points, like VAT rising to 20% and child benefit being frozen, are interesting, but I'm not qualified to comment.

What I am qualified to comment on is DLA, or Disability Living Allowance.

Before we go any further, the standard recap. There are two major types of "disability benefit". One is Incapacity Benefit/ESA, which is given to people who are unable to earn a living due to impairment or disability, to cover their basic living costs like food and bills. The other is Disability Living Allowance. This is money given to disabled people, regardless of whether they work or not, in recognition of the fact that disabled life involves higher expenses - having to run a car/get taxis rather than walking/cycling/using public transport, having to buy more expensive prepared meals rather than cooking from scratch, having to purchase and replace mobility aids, etc. Not all ESA claimants get DLA. Not all DLA claimants get ESA. They are different and separate benefits.

The coalition has stated that:
The Government will reform the Disability Living Allowance (DLA) to ensure support is targeted on those with the highest medical need. The Government will introduce the use of objective medical assessments for all DLA claimants from 2013-14 to ensure payments are only made for as long as a claimant needs them.


Let's start with these "objective medical assessments", because it seems to have given a lot of lay people the idea that DLA is currently given without medical evidence.

That's simply not true. Firstly, on the form you have to submit details of your GP, and any specialists or other healthcare professionals you see (from consultants to physiotherapists). You are also encouraged to submit any relevant medical reports, and copies of current prescriptions for medication or equipment. Secondly, they write to your GP, who is asked to fill out their own form commenting on your needs and also confirming the medical tests and assessments they have sent you for and the results. Thirdly, if the decision maker feels there is not enough medical evidence, they can demand a medical assessment by a private doctor or other healthcare professional working for a private company, Atos, who are paid a large amount of public money to conduct all government medicals (because asking NHS doctors to do it would just be too economical).

(Interesting aside: did we all see this story about Vikki Bell, a woman who worked for the DWP, was declared unfit for work by Atos in their capacity of assessing government employees, attempted to claim ESA, and was declared entirely fit to work by Atos in their capacity of assessing benefit claimants?)

So let's not pretend there's no medical assessments at present.

Moving on to "ensuring payments are only made for as long as a claimant needs them" - in their Poverty, worklessness and welfare dependency report the coalition made it clear that they regard it as a big problem that 1.1 million people of working age are "persistently" claiming DLA for five years or more.

Well, yes. You cannot claim DLA unless:

1) You have a terminal illness and are expected to die in the next six months.

2) You have had substantial care and/or mobility needs for at least three months and are expected to have them for at least another six months.

It's not a short-term benefit for easily-curable illnesses. It's mostly awarded for permanent issues, and many (perhaps even most, although I don't have the figures to hand) claimants are unlikely to regain their sight, or find that their legs have grown back, or otherwise experience a miracle cure within five years.

And it's also - apparently we cannot repeat this enough - NOT a worklessness benefit.

I am capable of some work. I work. I have worked continuously for almost three years. I earn money. I pay tax. I pay NI. I claim DLA. None of this is contradictory.

I would not, could not, stop claiming just because I work. Once I am using up time and energy on work, I have less time, energy, and flexibility for trying to manage my care needs. Once I am working, it is even more important that I have the ready cash to get taxis when I need them because I can't arrange working life around when a friend can give me a lift. It is more important that I have the extra funds to afford ready-meals or takeaways because I cannot spread a cooking effort out over the entire day. It is more important that I have money to enable me to repair and replace my mobility aids ASAP, using expensive courier services, because I can't afford to be housebound and not working while waiting for a Slow Super Saver postal rate.

Damn right we claim "persistently" - I think it is a forlorn hope on the part of the government that reassessment will cause our needs to vanish or that getting us off DLA will get us into work.

But then, for all the rhetoric, getting us into work isn't the point of the exercise. The point is to reduce the cost. If the only way to do that is by shifting the goalposts (while skimming a nice chunk off the top for their friends at Atos, the private company who conduct all government medical assessments, by creating a need for even more assessments) then that is what they will do.

I suspect the "object" of the new "objective medical assessments" will simply be to declare more people ineligible, regardless of their real needs or the impact the withdrawal of DLA will have on their lives, thus reducing the benefits budget. Regrettably, the eligibility might be reduced but the needs will remain, and someone will have to pick up the pieces - probably the already stretched and rationed health and social care services, as explained by Bendygirl.

Saturday, February 06, 2010

Definition of Relief

Regular readers will be aware that I've been waiting for the results of my DLA renewal. To recap, that's the disability benefit that is received regardless of work or income because it is supposed to help cover some of the essential disability-related additional expenses like equipment and transport.

I've been very anxious about this. Partly because of the circus that was my last renewal and partly because my existing award was due to expire at the end of this month, and I did not need my first few months of business to be dogged by personal financial struggles as well.

So this morning, when I heard the post land on the doormat, I wobbled out to the hallway, saw the unmistakable DWP Brown Envelope, reached for it, fell over, and was ripping it open almost before I'd hit the floor...

I have an indefinite award, at the same level I've had for the last two years.

In DWP-speak, indefinite is the word they use because the word permanent doesn't allow for people recovering, and the leaps and bounds of medical science can be unpredictable.

If I get better, then I must let them know and they will reduce the award.

If I get worse, then I must let them know and they might increase the award (or they might decrease it, because who knows where the political goalposts will be?).

If someone has too much time on their hands, they might decide to review my claim at any point just for squits and giggles. The government retain the right to put me under intense covert surveillance (google "Operation Ramesses" (sic)) and generally treat me like a criminal whenever they feel like it. That's par for the course of any kind of claim for assistance.

But it means they acknowledge that I've been in the same condition for long enough that I'm really not likely to change, and that there is little point putting me through the expensive bi-annual mill of renewals and medical assessments and appeals and suchlike. The level of assistance I receive can now be considered as permanent as my condition.

I'm shaking like a leaf. I've got the letter folded open here on my desk so I can keep looking at it to check I haven't mis-read.

If I was a more spiritual person than I am, I might believe this was some sort of reward for having finally taken the plunge yesterday and registered as self-employed. Which was going to be the topic of today's blogpost, but the DLA thing has kind of overwhelmed it.

Tuesday, January 19, 2010

DLA exam

This morning I had my medical examination for my DLA renewal.

A big thank you to everyone who left such supportive and encouraging comments on my last post - it really helped me to stay calm about the whole thing.

The doctor arrived on time and stayed for just under an hour, which is good as the examination is supposed to take between 20 and 60 minutes. He came across as a pleasant and professional man. He was patient when I was struggling with things and gave the impression of listening to what I was saying. He took an awful lot of notes and appeared to be trying to understand, although of course he also made several efforts to catch me out. He did seem a little perplexed about why he was being asked to examine me for a renewal rather than a new claim.

I don't know if he believed a word I said and I have no idea what he wrote down. But on the whole I am happy with how the examination went. My PA was also present and she felt it had gone well - that I had presented openly and honestly and that I had made my difficulties clear without exaggerating.

And now I can stop worrying until the next letter turns up.

Tuesday, January 12, 2010

Medical Examination

So, Disability Living Allowance, also known as DLA and a great source of both help and stress. To recap, this is the money given to disabled people regardless of income or work status, to help meet some of the unavoidable extra costs associated with disability, from wheelchairs to incontinence pads to home delivery fees to Meals On Wheels. It's split into Care and Mobility components, awarded at different levels depending on the extent of difficulty you have with each of these aspects.

Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.

As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:
  • Their 40-page form, completed with the basic and general answers.

  • A typed 26-page document giving the more detailed answers they ask you to provide to their questions, including information about good and bad days, equipment I use and how I use it, support I receive and so on, because these answers just don't fit into answer-spaces the size of a credit card on the form.

  • A copy of my current medication and equipment prescriptions.

  • A copy of my Social Services care plan and contact details for my social worker, occupational therapist, GP, Access to Work adviser and everyone else associated with my disability needs.

  • A statement from Steve as someone who lives with me.

  • A statement from my PA as a person who is paid to look after me.

  • A medical report from the ME/CFS specialist who formally assessed and diagnosed me.

In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.

But they say that they "do not have enough information."

They want me to be examined by a doctor from ATOS healthcare next week.

I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.

He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.

But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.

I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."

Please?