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."

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.

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.

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".

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.

slow progress

I was hoping to be able to bounce in here with a post saying that, after all the things which went wrong on Wednesday, everything was back on track and totally fluffy.

Perhaps unsurprisingly, that's not the case. But things are slowly and steadily turning back to positive.

On Thursday morning I got a lift to Shopmobility, who are the nearest vendors trained and approved to carry out work on e-motion wheels. They took the tyre off and showed me the state of the inner-tube (I felt quite embarrassed) and they've ordered in new ones for me. Several friends encouraged me to try bike shops, or order online and do my own inner-tube replacements, but I'm not that keen to invalidate the warranty and insurance just to see if I can save £2 or get it done a day sooner - besides, Shopmobility schemes are worth supporting. I should be whizzing around again some time next week.

A big thing that went well is that I managed to get some affordable coloured envelopes online (from Ideal Envelopes, if anyone's wondering). I ordered them late Wednesday night, they arrived on Friday morning. I spent much of Friday writing out addresses in my Very Best Good Handwriting, and by the time Steve and I went to bed, all but one of them (waiting on a new address) was stamped, sealed, and ready to go. There was a little pang of frustration when I remembered I couldn't just trundle out to the post office with Steve (he's hurt his back and can't push the manual wheelchair either) but instead we drove around to several different post offices until we found one with wobbling-distance parking outside. UK envelopes in the box, overseas envelopes weighed and stamped for airmail by the post office clerk, and then as we went back to the car, a Royal Mail van pulled up to collect. So hopefully soon we'll start getting RSVPs!

Meanwhile, friends on Twitter and on other forums have provided a number of balloon company recommendations, so I've been phoning and emailing to try and get more quotes, and have booked an appointment to see one company next week. Hopefully I'll get something sorted out fairly soon and then everything weddingy will be right back on schedule.

Unfortunately I'm having the sort of day where being a passenger on a drive to a post office this morning wore me right out for the day - I spent most of the afternoon asleep and I'm still in bed typing this. It is therefore with a slight feeling of shame and a huge amount of gratitude that I say thank you to the protesters who marched in London today, including several of the Where's The Benefit posse. I only hope that a difference can still be made. As DavidG put it:

It’s quite simple, Mr. Milliband, we want an alternative strategy. If cuts must be made, we don’t want them to be targeted at those least able to bear them. And that is where the Labour Party is failing us. It was a Labour government that introduced ESA and ATOS screening, it was the Labour government that stood hand in hand with the Heil, the Scum and the Vexpress in demonising those of us on IB and ESA as fraudulent scroungers and under your leadership it is the Labour Party in opposition that is still supporting those policies.

People who voted for the Conservatives knew exactly what kind of ideology they were voting for and are probably very pleased about the cuts that are being made to services for poor people, disabled people, disadvantaged people, young people, and People Who Simply Aren't Our Sort Of People, but let's not pretend that Labour were or would be any better. Our political system is supposed to provide a formal means of opposition within the political system and I think the biggest motivating factor in all these protests is that meaningful opposition, carried out on our behalf by those who are supposed to represent us, is failing to take place as MPs scramble for a slice of the power pie and focus on relaxing the rules and increasing the spend on their own benefits.

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.

One Month Before Heartbreak

This post is rambling, but that can't be helped. There's just too much to cover.

One Month Before Heartbreak is a blogswarm to try and raise awareness about the consultation on DLA reform, which ends on 14th February. I'd like to encourage anybody, disabled or otherwise, who is bothered by these reforms, to join in.

This post from the Broken of Britain explains a bit more about it, or if you're feeling brave you can download the official DWP consultation document from the DWP website.

The short version is: DLA is a benefit paid to long-term disabled people with significant care and/or mobility needs. It is paid regardless of whether or not a person is working, in recognition of the fact that the expenses of disability are non-negotiable - to give just one example, a working disabled person who finds their budget is tight is probably unable to save money by choosing to get rid of their car and walk places.

The coalition government intends to rebrand DLA as PIP (Personal Independence Payment). As part of this rebranding exercise, the qualifying criteria will be shifted with a stated aim of reducing the caseload by 20%.

As we've looked at before, benefit fraud is only around the 1% mark, and for DLA it's even lower, at just 0.5%.

This means that there's about 19% of the caseload (that's 570,000 people) who are genuinely disabled - not just that, but disabled enough to pass the already stringent tests - and legitimately claiming help with the unavoidable costs associated with disability, who are suddenly going to find themselves up a rather nasty creek.

We don't know who's going to be "safe". The document talks about continual reassessment (at great expense to the taxpayer and great profit to ATOS) even for people with lifelong and incurable conditions.

It talks about withdrawing support from people who use wheelchairs independently on the basis that since the DDA, the whole country must now be fully accessible to wheelchair users and thus there is no additional expense and support is no longer needed. The fact that many of those wheelchairs were purchased using DLA is not properly addressed.

It talks about introducing not just more restricted residency rules, but also rules about "presence" (ie attending regular meetings at the Jobcentre, a far from easy task for a disabled person) to bring it in line with other income replacement benefits and encourage people into work. Except DLA is not a sodding income replacement benefit and has bog-all to do with whether or not a person is working! And what if you are working? Will you be expected to take time off to attend your DLA interviews? Will your employer be expected to just suck it up that you are unavailable?

How am I affected personally? If it hits me, I will no longer have any personal income beyond my part-time self-employed earnings, and as I've already admitted, my business income after business expenses does not cover even the most minimal costs of living. Without DLA, not only will I be dependent on Steve to meet our combined bills like rent, council tax and electricity - I will have to go to him with my hand out for most of my clothes, and when I need a taxi to a medical appointment, or to buy a new prescription prepayment card, or replace my mobility aids.

That's not the point, though. At least there is someone in my life who will, in a crisis, fund the essentials of life. Many people are not so fortunate. They don't have anyone to help them out, or worse, the person who helps them may easily become resentful of the extra costs and start withdrawing support.

Finally...

The single thing I have done in my life which has saved the Great British Taxpayer the most money was getting together with Steve. All of a sudden, they no longer had to pay my housing or council tax, and the care I was deemed to need was greatly lessened by the fact I was living with a non-disabled adult. Then, thanks to the support and stability Steve gave me, I was at last able to get a part time job, which meant I was no longer claiming Incapacity Benefit or Income Support, either, which meant I was no longer entitled to free prescriptions or dental care, nor could I claim back costs of transport to medical or DWP appointments, and of course I was now paying in tax and NI. I still cost the system money, true, in the form of my DLA, the Access to Work scheme, and my little bit of social care. But this is much, much less than it cost to keep me alive as a single person.

I would not have been able to develop this relationship and thus become a working member of society without the independence DLA gives me.

It's not something that's going to persuade the coalition, but the fact remains - a non-disabled person might willingly move in with a disabled partner who is independent and only increases the food bill, but they're not so likely to take on someone with higher than normal expenses and no income at all.

I apologise again for the disjointed nature of this post, the probably appalling grammar, and the fact it's a bit late. As usual for winter, I don't have an excess of spoons right now and I'm using up most of the energy I do have on frivolities like eating, washing, work, and my duties as an employer of PAs (more on that another time).

Cllr Simon Button

I've been meaning to post this for a while but I kept looking at it hoping I'd imagined it. This is a scan of the front-page article of a local town council newsletter. It's the "winter 2010" issue and was delivered in mid-November.



The article complains that nobody has come forward to help Cllr Button to organise a local Fun Day. In many ways it's like every other self-important council newsletter you ever read. The bit that stands out, though, is the second paragraph on the second column, reproduced here verbatim:

"It is very sad these days that the old Winston Churchill philosophy still stands - "So much is owed by so many to so few". It seems that everybody wants these events, but nobody is prepared to help out. How sad!"

Yes, Councillor Simon Button draws a parallel between the organising of a tiny local "Fun Day" which entertains a few people for an afternoon and raises a small amount of cash for local charities... and the ultimate sacrifice made by thousands of soldiers in WWII as they fought, with their lives, to save not just the UK but the whole of Europe from the Nazi regime.

I'm not big on the politics of war but even I'd consider that kind of comparison both inappropriate and grossly offensive, especially when written for publication by a town council and even more especially when aired in November, at a time when the nation honours those who died.

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.

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.

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.

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.

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.

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.

Stop

Sitting in Steve's study this morning, sharing the first cuppa of the day, catching up on the overnight Twitter feed but discussing nothing more weighty than whether we had a good night's sleep.

A thought occurs to me, I raise my head and start with "Steve?" but before he can respond, a scythe of pain slices through me, somewhere behind my eyeballs. I can't see, the world spins, I want to lie down but I can't work out which direction that might be.

Stop.

There's ways and ways of saying Stop. Steve knows me well enough by now to understand what this one means. He doesn't ask questions, he doesn't move, he doesn't fuss, he just stops and waits. If we are lucky, I'm going to catch myself and slowly work back up to speed. If we're not lucky, he'd better be ready to catch me and make sure I don't knock the cups over.

Time passes, but we are a tableau, a freeze-frame, suspended animation. With an effort I breathe in, and then back out. A brightly-coloured wriggling skewer of pain dances in the cavern of my skull which suddenly seems to be much larger than any part of my body has a right to be. I breathe again and my outstretched hands identify the edge of the guest bed, which my upper body gratefully sinks onto. The duvet fills my eye sockets with calm, refreshing darkness, and the vicious little spears of pain begin to dissipate into a cloud which is bigger, but more muted and easier to cope with.

Slowly, the passage of time reasserts itself. Gently, Steve begins to move and both of us make a conscious effort to relax again.

Soon we start to giggle about the unfairness of him being effectively told to shut up before he's had a chance to say anything. The tea has not quite gone cold. I will have to be cautious today, avoid pushing my limits, but as long as I'm careful, I should have the spoons to manage everything essential.

Life goes on.

One of the 'essentials' today was to go and vote, with the help of my PA. I'm pleased to report that it was an accessible experience - we were able to park at the polling station, wheel in without difficulty, there was a wheelchair-height polling booth available, and I was politely advised that if I had difficulty reaching to post my paper into the ballot box, I could ask one of the officials to do it for me. I didn't - but the offer was appreciated.

Winter Heating

As some of you may have noticed, it's been rather chilly in the UK lately. At the risk of stating the obvious, this has an impact on people who can't keep themselves warm properly. There are all sorts of reasons why a person might have trouble keeping warm, but the main ones are connected to age or illness. For instance, there are conditions and medications that play havoc with your 'internal thermostat', there's the issue of poor circulation, there's the issue of being unable to move about enough to adequately boost your circulation, and of course there's the issue of poverty, which disproportionately affects elderly and disabled people.

Never fear, the BBC reassured us:

... the government said it would be making cold winter payments because temperatures had been low enough for vulnerable people to qualify... ...Minister Helen Goodman said: "The payments are automatic so everyone entitled will get them and should not worry about turning up their heating."

But who is entitled?

Well, there's two different payments. The first is the Winter Fuel Allowance. This is for all UK residents over the age of 60 and is made every winter. It is automatically paid for anyone on a state pension or pension credit, other people who are old enough can apply for it separately regardless of wealth. The payment is between £125 and £400 per person depending on your exact age and how many people are in your household, and has an effective minimum of £250 per household.

The second is the Cold Weather Payment. This is more complicated. More people can get it. There's the pensioners (again, and on top of the Winter Fuel Allowance already recieved). Then there's people on Income Support, Jobseekers' Allowance or ESA who also have a child under five, or a pension or disability premium added to their basic eligibility.

However instead of being paid every winter, it is only paid when there has been a "period of extreme cold weather", defined as seven consecutive days on which the average daily temperature at your postcode's weather station was zero or below. If this happens, a payment of £25 is added to your benefit for each seven-day period.

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. You do not need extra heating in this circumstance.

If your child over five is sent home from school, and you have to heat the house during the day for their sake - no payment. You do not need extra heating in this circumstance.

If you are disabled in a way that affects your body's ability to keep warm, but instead of being at home and claiming benefit, you are working from home (either permanently, or because you cannot get into your workplace in the snow) - no payment. You do not need extra heating in this circumstance.

Today Helen Goodman, the Minister for Work and Pensions, was supposed to answer questions in a No 10 webchat. This was keenly followed over on Ouch! and Twitter and unsurprisingly we were all left disappointed. Polite, well-typed and specific policy questions like "What is the specific reason for Winter Fuel Payments not being available to the most vulnerable disabled people as well as pensioners, please?" were ignored in favour of the type of questions that are already very easily answered with a quick search of DirectGov, the type of questions that allowed the Minister to promote the Warm Front Scheme, or questions about individual circumstances such as this gem:

melita:
hi this Cold Weather Payment is it for everyone as on the directgov web page its as if u have kids under 5 in witch i have 2 kids under 5 so would that mean i get the Cold Weather Payment x

Helen replies:
Melita,
If you are on Income Support and you have a child under 5 years old, you will get a Cold Weather Payment. The same applies if you are on income based Jobseekers Allowance, with a child under 5.

Quite how people like "melita" have the capacity to find out about, submit questions to, and watch a government webcast, yet were unable to contact their local Jobcentres to check their specific eligibility, is beyond me.

Disabled people were told that they already get Disability Living Allowance (DLA) to pay for increased heating costs. It's quite astounding the amount of shortfall that DLA is meant to cover. As Lisy put it:

We're only granted DLA for "care" and "mobility". There's no "heating component" of DLA or an "any other costs" component of DLA. Please explain how we're supposed to pay for heating if all our Mobility component is taken by Motability and all our care component is taken by Social Services?

Another question there that, unsurprisingly, the Minister chose to not answer.