Monday 22 October 2012

Misleading Stories

Esther McVey, our new minister "for" disabled people, claims in this BBC article that:

there were a lot of misleading stories about the impact of welfare reforms on disabled people.


too often under the current system we are wasting money on overpayments where people's conditions have changed, with £630m a year on DLA alone.

According to these official DWP figures on page 14 the total annual overpayment is £240 million, less than half of McVey's claim.

Of that £240 million, only £60 million is lost to fraud. If your circumstances change and you fail to notify the DWP that is benefit fraud.

The amount of overpayments because someone's condition has changed has got to be less than £60 million a year because that £60m includes not only people whose condition has changed, but the outright false claimers too. Now; who exactly is it spinning misleading stories?

I once calculated that reassessing all DLA claimants annually would cost around £247,456,000. £247 million on reassessments is a hell of a lot more "taxpayers money" than losing less than £60m a year to fraud.

Then there's the fact that a hell of a lot of people don't get indefinite DLA awards. People with conditions that might get better get limited term awards. It's only people with incurable conditions like mine that get indefinite awards. Declan Gaffney once explained how at any given time there will always appear to be a greater percentage of people with indefinite awards, but many, many people get limited term DLA and the implication that everyone's got a lifetime award for a temporary condition is just a tall tale. Or a "misleading story".

Tuesday 16 October 2012

If they don't know how can we know?

I was at a disability conference today.  Amongst the various different speakers there were two staff members from local branches of jobcentre plus.  They'd been asked to talk about the new Personal Independence Payment or PIP which will be replacing DLA.

I was sitting at the back with the vice chair of a disability group which is very influential within Oxfordshire.  We'd like to think that we're both pretty clued up on the changes that will be coming in the next year or so.  Or at least as clued up as it's possible to be when the exact details of the changes still haven't been decided and/or announced.

Within the first five minutes of that talk we both went "that's not right."  Because not only was the talk highlighting just how badly the changes have been thought out, it was also becoming clear that the speakers understanding of the changes didn't match reality. 

PIP comes in next April.  According to the speaker existing DLA claimants will then be written too to be offered the chance to apply for PIP instead if they are likely to be better off or remain on DLA until their award ends if thats what they'd be better off on.  I have an indefinite award of DLA (I have cerebral palsy - a life long condition that is incurable and doesn't improve) and the way the talk was given it appeared that I have the choice to remain on DLA indefinitely and never move to PIP.  If that was a real choice it's the one I'd make.

The reality of the matter is:  PIP comes in next April for new claimants and reassessments.  She's right about that.
Some DLA claimants may at that point chose to claim to PIP. She's right about that.

 But starting in October next year all DLA claimants regardless of whether their award is time limited or indefinite will be reassessed on a rolling basis until everyone is moved to PIP.  There is no consideration of which benefit suits people better or choice in the matter.  Just like the Incapacity Benefit to ESA migration this is forced upon us.  That wasn't clear in that talk.

I went to speak to the them after and asked for clarification of the situation with an indefinite DLA award.  And after checking their notes they agreed that it has no effect on PIP migration.  I got correct information.  But  we have a room of in the region of 50 disabled people who were given unclear information or which is could even be argued is wrong. 

Changes to benefits mean it's possible fines of up to £50 a time could be levied against people who make mistakes or omit information when filling out benefit forms.  If staff on the front line of benefits services don't know the information that's needed how can the disabled people whose very lives it affects be expected to know?

It's a shame each person at that event couldn't levy the same fine against the jobcentre staff for failing to make their talk clear.  We could use it to fund our next event - and to support each other through these changes in a way that doesn't seem available at the moment.

Sunday 14 October 2012

Poor and disabled? Tories think you're a troublemaker

I wrote yesterday about the plans by Iain Duncan Smith to restrict what "troubled families" can spend benefits on through the use of smart cards, and why this is a terrible idea for many reasons. It's even worse than that though. The plan is to get councils to send "troubleshooters" to confront these families and force them to conform to the expectations of the government. The Independent and BBC News both have more details.

What I didn't write about yesterday is the definition that the government are using for troubled family, and that definition is very bad indeed. The Conservative Party have turned to research by the Economic and Social Research Council (ESRC) to decide who might be "troubled". The government have decided that a troubled family is one that meets five out of seven criteria:
  • Low income
  • No one in the family who is working
  • Poor housing
  • Parents who have no qualifications
  • The mother has a mental health problem
  • One parent has a long-standing illness or disability
  • Unable to afford basics, including food and clothes.

Government Lies

In fact these criteria boil down to one thing: poverty. And the ESRC have come right out and stated that the government have basically made up their own minds about what it all means. They said "In the term 'troubled families' it deliberately conflates families experiencing multiple disadvantage and families that cause trouble." The definition that the government are using does not mention child truancy, criminal records, ASBOs, police call outs, drug abuse, or any of the other things that they claim to be addressing.

It is quite likely that none of these conditions are under the control of the family themselves, and yet under government plans they can be penalised for it. Even worse than that, though, is the presence of illness, disability and mental health on that list. These are definitely not under the control of the people involved, but it is clear from what Eric Pickles told The Independent that the government do blame these people. Pickles said that these families must end an "it's not my fault" culture of excuses and must stop avoiding taking responsibility for their own lives. He said that there would be "less understanding" and a tougher approach.

Victim Blaming

This is blaming the victim, plain and simple. It fits right in with the Bio-Psychosocial model of disability that the government have adopted after decades of being advised by insurance company UNUM. The model basically says that disability is all in the mind of the disabled person and they only need to adopt a better attitude to overcome barriers to work and other activities. This is the model that has seen so many people judged fit for work in their Work Capability Assessment by Atos, and now we see it being used to clamp down on poor people who the Tories find distasteful. Instead of helping them, which costs money, they are punishing them because they don't fit their Victorian ideal of "deserving poor".

120,000 troubled families could be legally banned from spending benefits on alcohol and tobacco [Telegraph]
Problem families told - 'Stop blaming others' [The Independent]
Councils back troubled families scheme [BBC News]

This blog post first appeared at A Latent Existence.

Saturday 13 October 2012

No alcohol or tobacco

"No alcohol or tobacco"

That's what you get printed on vouchers for emergency food supplies  from Co-op and Tesco given out by a charity where I live. And now, it seems, it could apply to all benefits paid to "120,000 problem families" if Iain Duncan Smith has his way. According to The Telegraph:
Iain Duncan Smith has asked his officials to see if so-called ‘problem’ families should receive their welfare payments on smart cards, rather than in cash. 
The cards would only be able to pay for “priority” items such as food, housing, clothing, education and health care. 
The Work and Pensions secretary wants to stop parents who are alcoholics or who are on drugs from using welfare payments to fuel their addictions. 
The team of civil servants in his department have been asked to come up with proposals by the end of this month.
We can find the government's definition of these 120,000 "problem families" in an article from The Independent back in June:
Under government criteria, a troubled family is one that meets five out of seven criteria: having a low income, no one in the family who is working, poor housing, parents who have no qualifications, where the mother has a mental health problem, one parent has a long-standing illness or disability, and where the family is unable to afford basics, including food and clothes.
There are many problems with this definition but it can be summarised thusly:

The Problems

Leaving aside for a moment the morality of dictating what people can buy, the first problem I can see with this scheme is that it will favour big businesses and supermarkets and leave small local shops and markets by the wayside. There will be costs involved in accepting these payment cards as well, I'm sure, as checks to make sure that shops honour the restrictions. Markets are usually cash only which would bar people from getting cheap local fresh fruit and vegetables.

The second problem is related; because of barriers to accepting the smart cards or to restrictions on what can be purchased people will be barred from shopping around for cheaper food and some will be prevented from purchasing specialist items that are required for their health but are not prescribed or considered by government to be necessary.

The third problem, and possibly the biggest problem I see is that sick or disabled people often have no choice in where they shop. The limited ability to travel or to carry things can mean that the nearest shop is the only one they can use. If small shops are not able to accept these cards then there may be no other source of food open to these people.
Many sick or disabled people order their shopping over the internet; in fact this is often a requirement since care plans have written internet shopping in so as to cut costs of providing carers for shopping trips. This will probably be less of a problem since supermarkets will accept cards but the question remains as to whether or not they will accept them over the internet.

Breaking Addiction

If the idea of this scheme is as reported, to stop feeding addiction, then it will be pointless anyway. Addiction is powerful and removing funds doesn't mean that people won't be addicted any more. If someone is dependant on nicotine or alcohol then providing benefits on a restricted smart code will not prevent them from obtaining these things if they have to. It will lead to a black market - to bartering of valuable food items for cigarettes and alcohol, or to selling of restricted funds for much less than the real value resulting in less money for the benefit recipient. It could well lead to theft to feed the addiction. It will certainly drive some into prostitution. Drug dependency drives people to desperate measures and they won't always be rational.

Pleasure and Entertainment

Finally we must ask why society deems it acceptable to tell those who are least fortunate that they must not have any pleasures or enjoyment. It seems that those who must rely on benefits are resented and even envied for what they have. Some is illogical; for example Motability cars are not a luxury, they are required for people who cannot walk to get to medical appointments or to go shopping and the cars are leased not given. Internet connections may be the only way that some people can shop, communicate, pay bills, claim benefits or get support and yet some people still think that an internet connection is a luxury that those on benefits should not have. People who have TVs and perhaps TV subscriptions are resented, but for those who are forced to stay in the home by illness or have no funds to go out it may be the only thing to occupy their time. Should these people be forced to sit and stare at the wall for the rest of their lives? We seem to have broken the concept of national insurance. When a person who has worked and paid their dues becomes unemployed or unable to work and receives benefits they are resented for claiming benefits that they have been paying for while working. Must they too give up all pleasure in their lives?

The government hasn't addressed the reasons for smoking and drinking either, and it's not just about addiction. Smoking is an appetite suppressant  When food is expensive and income is so low parents often buy food for their children while smoking to mitigate their own hunger pangs. Alcohol is a pain killer and a sedative; like it or not for some people despite all of our medical advances alcohol may be the only way that they can have a few pain-free hours or relax enough to go to sleep.

Nanny State

Others have said this better than me:
I shall end with this. Another extremely worrying element of this is what the cards would pay for:
"education and health care"
Now why would we need to pay for those?

120,000 troubled families could be legally banned from spending benefits on alcohol and tobacco [Telegraph]
Problem families told - 'Stop blaming others' [The Independent]

This blog post first appeared at

Monday 8 October 2012

Work Consultation

As many of you may remember, I ran a consultation on this blog some time ago, asking about work with long term fluctuating conditions or disability. It received over 250 responses.

Most people said they would like to "work" but that they either could not possibly now hope to work at all or that "work" as understood in our society simply does not suit or accommodate people with mental or physical illness.

However, five ideas came up time and time again :

1) Working from home - In 2012, many commented that it is ridiculous that businesses don't do more to allow people with illnesses or disabilities to work from home. With email, Skype and video conferencing, intranets and disability aids, it is perfectly possibly - indeed cheaper for many businesses - to facilitate home working.

However, the concept of "part time" or "full time" work as understood by most businesses does not fit with long term, unpredictable conditions. Any work would need to be utterly flexible, allowing the employee to dip in and out as their conditions require. Some might work well very early in the morning but be useless by midday. Some might be able to work for an hour or two here and there. Some need work that they can do at night when symptoms make sleep impossible. Any work would need to be utterly flexible over a 24 hour period.

It was felt that many had great experience and expertise from a lifetime of work that was now going to waste.

Employers were as much a barrier to work as the conditions that make work so difficult. Much more had to be done to include businesses in any conversation about taking on sick or disabled employees.

A "Work Bank" allowing businesses to upload overflow work from peak times (ie data entry, paralegal, accountancy, design, etc) was suggested. Business could plan for busier times, and those looking for flexible work could log on, accept certain hours or chunks of work and "bank" hours towards an annual work goal.

2) Micro Businesses - Many felt that they had developed new skills since becoming chronically ill. Hobbies had become slightly more, but the benefit system simply didn't allow them to develop these into viable businesses. As soon as they started to earn any small income from these talents, they found themselves unable to develop them as they simply weren't confident enough to lose all benefits.

Many suggested a kind of small business co-operative, where those living with long term conditions wanting to develop small businesses could come together in an area and support one another. Some might be better able to take product to market, some might have great marketing skills, yet others might be creative but unable to physically participate.

A combination of small micro-loans, Access to Work, networking with others in the same position, business support and flexibility within the benefit system might allow these businesses to flourish. Might. But crucially, there needs to be a totally new approach to benefits and work that allowed space and accepts that those with significant barriers to work need a much less punitive benefit system with much less draconian marginal tax rates and sanctions.

3) Education and training - Often, when someone becomes chronically ill or their impairment means that their current job is no longer viable, they are simply thrown on the scrapheap. Every study shows that once someone with an illness or disability is excluded from the job market, it is many times harder to re-enter.

A real commitment to find other suitable work within an existing company, supported by Access to Work, re-training or further education where appropriate could mean that someone never becomes excluded in the first place. This should be a partnership between the person with barriers to work, employers and government. All too often it has been a lonely path between a supportive employer and a willing worker, but the business simply cannot carry these costs alone. A little early intervention from Government could save years of benefit payments in the future.

4) "Falling off a cliff" - For decades our benefit system has become more and more punitive with tougher sanctions and limitations. The more dependent on social security someone is, the more impossible it becomes to consider any kind of paid work. Earning disregards (the amount you are allowed to earn before losing huge chunks of support) are ludicrous - often as little as £20 a week. This, sadly, is unlikely to improve significantly under Universal Credit.

Successive governments were seduced by the idea that those with long term illnesses simply needed to try harder, yet at every turn, politicians created their own barriers to work within the very system supposed to enable and encourage.

If someone stands to lose £6,000 a year in benefits by working, they need to know that they can earn at least that amount - reliably -before they could have the confidence to "go it alone". If someone will lose £10,000 or even more, yet could only ever reasonably expect or hope to earn a few thousand, many are excluded from even trying.

Politicians must accept that :

A) Some will simply never be able to "work" again at all.

B) Some will never be able to work again in the way society expects.

C) Some will always be excluded from the workplace despite a willingness - even eagerness to work.

ALL work should be valued. Anyone with a significant impairment should get extra support. If they have a diagnosis that means they will always face difficulties sustaining consistent work or face barriers to working, any work they feel they can do should be supported.

If someone can only ever manage a few hours from home, or can only manage to volunteer for a few hours here and there, that effort should be rewarded too. If we truly want a "good society" or a "big society" or "one nation" then we must value all contribution.

Politicians should consider a "volunteer credit" - available to those discussed above, carers, parents who support their children's school, or any other volunteer who is for whatever reason unable to "work" traditionally. The credit could boost final pension levels.

5) Despite all of the above, many with long term fluctuating conditions asked what on earth they were supposed to do during very bad times. All of the above suggestions meant that there would be times when they were simply unable to "work" and would be left high and dry with no salary. The "rollercoaster" effect had led many to give up on the idea of work at all. One minute self sufficient with some salary, the next plunged into poverty and fear, faced with a welfare system almost impossible to re-enter, the stress of re-applications, tribunals, appeals. Ironically, the more sanction we have developed, the less likely those with long term illnesses are to feel they could even attempt to work.

Those with long term conditions that will always face a significant barrier to work should see some of the tax they pay go towards a "lifetime fund" - heavily subsidised by the employer and Government (just as a pension is) that they can dip in and out of when illness makes it impossible to work. It might go back to the employer to help them cover long periods of illness. It might provide a small extra income during very difficult times. It might pay for adjustments when they become necessary. For the relatively small cost to the employee, business and government, it would be vastly cheaper over the long term in wasted benefit payments and recruitment or lost work hours.

Business have been largely absent from these discussions for too long. However, there appears to be a real appetite to change this, just a lack of suggestions on how. Tax incentives could encourage business to take on more people who suffer from long term conditions. Targets for employing a certain % of long term ill or disabled people are used effectively in many other developed countries. Government effort could be channelled much more into supporting business to set up schemes such as those detailed above, or "cover" business against times when the worker simply cannot work, rather than decades of social security support.

So, with all of this in mind, could I ask you again, to leave your comments below? If you would like to answer the questions below, it might help to add a little structure, but if not, feel free to say as little or as much as you like and of course, make any further suggestions you have.

Would any of these suggestions help you?

What is your condition, How long have you had it for?

Do you have other suggestions that you think could work?

When did you last work?

What did you do?

How long did you work for?

Why did you have to stop working?

Would you like to work, however little?

Are you now totally unable to work?

Does the benefit system hold you back from working?

What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

The biggest problem has been politicians who conflated long term illness with worklessness. The two are not the same. Please, if you can spare a few moments, use this thread to explain to politicians why.

Many thanks.

** Some have suggested that the list of questions at the end may make some reveal too much personal information. PLEASE don't feel pressured to reveal anything personal at all. 

Sunday 7 October 2012


I was sent a consultation document from my council this week. I'm always happy to take part in a consultation, as it shows that the council is doing what it is supposed to, and consulting on changes. But, unsurprisingly, in these days of Coalition cuts-that-kill, this consultation seemed to have something of a hidden agenda, beyond just asking for people's opinions.

The subject of this survey: Council Tax Benefit cuts. I'm not currently on Council Tax Benefit, but I have been in the past, and I'm sure I could find myself in a situation where I need to claim that benefit in the future. Any of us, at any time, could find ourselves in dire straits in this economy - disabled or not. The survey opens with a brief explanation about how they will ask questions about what their current and future priorities for housing should be. (As you will see, this explanation turned out to be inadequate.) Fine, I think. And then I see the questions.

Question 1: Bringing empty homes back into use should be a priority.
I have no problem with this. I see houses sitting empty in my area all the time - often, I suspect, as a result of mortgage repossessions, but probably also as a result of people owning several properties and not being able to rent some of them out. I tick the box marked 'agree' - it could be one of the council's priorities.

Question 2: Proposed changes in legislation should be used to reduce council tax exemptions and discounts on empty homes and second homes.
Hang on a minute. We just moved from sensibly-worded questions to ones that would get me a 'fail' on my Quantitative Research Methods course. Now I have a problem. I am all in favour of the council reducing discounts for people who own more than one home. I have no idea why they get council tax discounts at all - if you can afford to own two homes, you can afford to pay council tax on them. So why have the council potentially shoved in two extremely different groups of people together in this question? Depending on how you read the question (which is very unclear), it looks like two groups could be lumped in together here: rich landlords, and other, often extremely poor people who need to claim general council tax exemptions. If the second group is suggested in this question, this includes a large number of disabled people, many of whom claim a discount because they have an extra room (for a carer to sleep in, or for mobility equipment, or because they need more than one bathroom as a result of their care needs). As a dyslexic and dyspraxic person, I have serious problems understanding which groups are meant to be included here. I sighed, ticked 'strongly disagree', and wrote an explanation: This question is unclear. I am happy to see reductions on second home exemptions, but do not touch council tax exemptions for those on benefits, disabled people, and other people who need them for reasons of disadvantage and poverty. They are the reason why council tax exemptions exist.

Question 3 was another fairly clearly-worded, not-too-controversial question about charging more council tax on empty properties, and then we get to question 4.
Question 4: Whilst pension age claimants are protected, working age claimants should have their amount of council tax support reduced.
Ah yes. A leading question that suggests we will 'protect' the people who it's currently fashionable to help (those 'hard-working' people who have now retired), but not the scroungers who don't work. Look at how they refer to us: 'working age claimants'. Why not a term that gets across the concept of 'those who can't work because they are disadvantaged by this economy and its high unemployment levels, and disabled people'? I can't believe it's really that difficult to call us something that suggests 'disadvantaged people' rather than 'people who should be working'. I think this is emotive and biased wording of a question - another example of bad quantitative research. I ticked 'strongly disagree' and tried to explain why (in the very small amount of white space next to the ticky boxes).

Question 5: Using existing administrative and computer systems to minimise costs should be a priority at this point in time.
I'm not at all sure what they meant by that, but I ticked 'agree'. I wonder now if I should have left it blank. Questions in quantitative research, and especially in consultations, should be clear. Nowhere on the consultation paper was this question explained in more detail.

Question 6: Changes to other welfare benefits should be known about before looking to implement a radically changed council tax support scheme.
Again, this is a bit unclear - what changes are we talking about here? The information sheet hasn't fully explained this. I ticked 'strongly agree', and wrote 'Any cuts to council tax benefits must be applied sparingly, and only once we know the effects of current cuts on disadvantaged groups'. If I'd had more space, I'd have written a lot more about how disabled people are being abandoned into worse and worse levels of poverty by government-level benefit cuts, and how councils should be helping to make this a little bit easier, rather than jumping on the bandwagon and cutting local-level benefits too. I did not have enough space.

There were no 'Please write any further opinions here' type questions/spaces at the end. This is a serious failing in a consultation, and especially on such an unclear survey. As you can see, I had a lot of words I wanted to write, to explain my answers in more detail.

But what worried me most was the list of ticky boxes at the end. The survey had two sections under 'ABOUT YOU' - the second section involved Equalities Monitoring (and was solely about ethnicity). The first section, which I have to conclude would be used in analysis for putting answers in context, asked the following. Am I male or female? Answered. What's my age band? Answered. And then:
Are you presently claiming council tax benefit?
Oh, excellent. A chance for the council to discount the opinions of the people who will be affected by these changes most. The opposite might be true - but how do I know? The way these answers are used are not explained, anywhere, and that's the biggest problem here.
Will the proposed changes to council tax discounts affect you?
See above. I ticked 'no' to both of these, which is the truth at the moment (although possibly not in the future), and in the hope that they would take my answers more seriously as a result. But why should I be given that privilege? No explanation of how these answers will be used means people are left confused.
And the final whammy:
Do you consider yourself to be disabled?
Given that this question was also NOT under the 'equalities monitoring' section, I can only assume that, once again, this information is being used by the council in their analysis of my answers. I was so close to ticking 'no', until I realised that the council just might be using this information to give my answers more weight, not less. Unfortunately, since they again haven't explained how it will be used, I'm left very worried about what my answer (I did tick 'yes') will mean for the way that my opinions are taken into account.

The 'equalities monitoring' section itself was about ethnic origin. This once again gives the impression that disability is not an equality issue in this consultation - it's a situation that will be taken into account when answers are analysed. I still don't know how.

Consultation is really important. Councils have to consult before they make changes to things like benefits. I may be wrong about how the questions about disability etc. are being used - maybe councils do want to listen more closely to the views of people who will be affected by the changes. Unfortunately, with no explanation of how any of these questions will be used and analysed, and with such a poorly-designed survey anyway, I'm left with paranoia and doubts - especially in this age of the government ignoring disabled people's opinions and needs, on a massive scale.

I will be writing to my local councillor and asking why the council is issuing, as a consultation document, a survey that wouldn't pass as a basic Quantitative Methods assignment at university. Personally, I think they know very well what they're doing, and that they're using the badly-worded questions and lack of explanations for their own purposes. I can't prove any of this, of course. But there are far more responsible ways to consult, so that 'vulnerable' people aren't left feeling like this.

Have you experienced a bad local consultation recently? Are you concerned that your council is finding ways to overlook your opinions? I'd like to know how widespread this situation is.