British disability benefits, shockingly shameful behaviour

New petition link added August 19th, 2012 (see first links below post), thank-you, xxx

Currently the London Olympics is on the TV all day every day. It’s on the news. It’s on the morning chat programs. It’s everywhere. The games seem to be going well, even the transport system is coping (admittedly this is largely as a result of us Brits being warned that it will be awful so none of us are going anywhere!). This year we also had a royal wedding and the Queen’s diamond jubilee. It’s a year for celebrations. A year to wave our flags and be proud. And yet I am currently torn between ‘joyful Brit’ and ‘ashamed to be a Brit’.

The force that has torn my attitude into two parts is that of the recent undercover insights into the UK disability benefits system. As this information has been popping up online I have been finding out that even friends from overseas are aware of the changes occurring. One person used the word “barbaric” and to be honest… I agree.

The old system certainly did need to be changed. The previous Labour government (left-ish winged) introduced a new scheme in 2008 which they admitted was lacking but that a pilot scheme would be run so that amendments could be made before rolling it out to the rest of the country. Of course you would expect that the election of a different government could well make that journey more bumpy , (current government is now a coalition: majorly right-wing, minorly left-wing), but an economic downturn took the limelight in the news headlines, and somehow this pilot study just got rolled out as it was in it’s raw form.

“Can you hold a pen?”, was the famous question that initially made us all quake in our boots.

“Yes, even if I don’t know what it is at the time/am in the process of fainting/am in so much pain that I don’t really know what’s going on…” were some of our many varied replies. And the ‘yes’ box would simply be ticked.

Here is a link to the directives in which 11,000 disabled per week have been assessed in the light of.

It doesn’t take many brain cells to spot the consistently massive error continuously sledgehammering into our consciousness as we read those directives. Funnily enough, they have been found to be incredibly inadequate (i.e. a completely irrelevant bunch of arse), particularly for those disabled individuals who have conditions which are inconsistent and thus vary throughout each day. There are no grey areas in the form that the subcontractors have been advised to fill out on our behalves. It is black, or it is white. There are no other options with which to answer. So we are either terminally ill or obviously severely physically limited… or… we are absolutely fine and dandy. Oh skippety hop, apparently lots of genuine disabilities no longer exist. We must all be in remission, right? (Did you spot the sarcasm? Sorry about that!) In the light of these directives CRPS is not a disability, nor is any form of dysautonomia, or ME, or CFS, or mental health issues, or…, or………  Simply because we cannot say  “we cannot pick up and move a 0.5 litre carton full of liquid”, but we also cannot say “we can pick up and move a 0.5 litre carton of full liquid”. It’s not rocket science, it’s just that many many disabilities are not a yay or nay scenario. They are a “yay sometimes but with resulting pain and other condition issues, but nay the rest of the time because our conditions are varied and we permanently have to work around the symptoms as well as biological and neurological payback”. Oh, is there not a tickbox for this option? Grrrr.

A black and white assessment of a many coloured disabled population

This new system is costing government and taxpayers £100 million to roll out to all, and an additional £50 million every year in appeals owing to the level of fault in the system. The fault isn’t minor either, around 38% of appeals are successful, and if a professional is involved to shed light on the health of the individual then the success rate is more like 80-90%. This isn’t just hurting the disabled, it’s costing everyone a vast amount of money. Helping people to get back to work is admirable, the main problem is that they are targeting people who really want to work, but genuinely can’t.

The UK definition of disabled (under the Equality Act 2010) is….

“A person has a disability if:

• they have a physical or mental impairment
• the impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities”

And just in case that wasn’t clear enough….

“For the purposes of the Act, these words have the following meanings:

• ‘substantial’ means more than minor or trivial
• ‘long-term’ means that the effect of the impairment has lasted or is likely to last for at least twelve months (there are special rules covering recurring or fluctuating conditions)
• ‘normal day-to-day activities’ include everyday things like eating, washing, walking and going shopping”

Additionally…

“Progressive conditions considered to be a disability:

There are additional provisions relating to people with progressive conditions. People with HIV, cancer or multiple sclerosis are protected by the Act from the point of diagnosis. People with some visual impairments are automatically deemed to be disabled.”

I reckon it’s now probably really easy to spot an ‘invisibly’ disabled person in the UK, coz we’re the ones with the expressions of incredulity and abject terror!

Hilariously (?) the voiced main reason for reform was to get those on benefits back to work, and yet there are reports beginning to surface that the replacement general benefit is going to offer less incentive to get back to work than the old versions being replaced.

For those of you not familiar with British benefits, there are politicians referring to a ‘benefit culture’ over here. They are referring to a percentage of society who were raised by parents on benefits, brought up to live supported by the system, and then themselves progressed into a benefit funded life as adults, thus perpetuating the problem. This is a small percentage of society, but one which gets noticed and which the rest of society is not too chuffed about.

Now…the really important bit… …these are people on a low income benefit, (called Income Support for many years and still referred to as such). It is ‘means tested’ (based on your income) and so it exists to support those on low incomes… carers, single parents, refugees learning english (only for their first year), people on parental (maternity/paternity) leave. So you can see how a fraction of people can continue to exist on this benefit for many years. Particularly carers, who do a sterling job for barely enough money to survive on. Not to do the single parents down, of course, just that as a disabled person I have extra insight into the carers life. A small number of people on low, or no, income, however, may have the opportunity to get off benefits but prefer not to. They are the sub-group to which the politicians are referring.

The disabled are not on Income Support. They are on Incapacity Benefit. Courtesy of their being incapacitated. The clue is in the name, see?

However, for many years I have been told that Incapacity benefit does not exist by all sorts of professional people filling in forms for me. It doesn’t always show up as an option on their forms, it just isn’t known well enough and gets missed off the lists. Everyone has heard of Income Support, though. The incorrect assumption is that disabled people are on this benefit. And thanks to some exceptionally poor media reporting, very unhelpful wording and theme-blurring by politicians, the misunderstanding is that the ‘scroungers’ includes most of the disabled.

Pause for perspective….. It is estimated that there are less than 1% of benefit fraudsters, and there are already teams in place who thoroughly, and secretly, investigate those individuals. Additionally, the government’s own statistics show that there are eligible people out there who do not apply for benefits to which they are entitled, either because they choose not to, or because they do not know that they are eligible.

The reality is that whole benefits system is being re-jigged, but the media/politics focus is on (a) the ‘scroungers’ and ‘fakers’ and (b) disability benefits. Unsurprisingly these badly presented and blurred themes have become one and the same in the minds of the general populous, and attacks on the disabled has risen substantially. As if to underline just how much people don’t understand the paradox they are perpetuating, the type of disabled who are bearing the brunt of these attacks are the ‘obviously’ disabled, adding even more trauma and difficulty to their already complex and difficult days.

There have been two investigative programs televised recently in the UK about this issue. They both uncovered the same issues.

First error: hiring an IT firm to do disability assessments. ATOS is a French company with no experience of working with disabilities. As a researcher myself I am all too aware of the dangers of an assessment like this even when it is undertaken by appropriately qualified professionals in the field. At the very least the assessments should be written by top healthcare experts in conjunction with top health psychologists. With the foundation of the project already throwing away all the crucial knowledge and complex ethics understanding which is required, of course it was going to be useless. No surprise there at all. The question to ask is why was there no effort to have any knowledge involved in this assessment at all?

An undercover primary care doctor found that: of the individuals assessed, allowing any more than 12 to 13% to remain on disability benefit would result in the assessor being assessed themselves because this is considered too many! This means that 87% of all individuals on disability benefit are going to be declared ‘fit for work’. Only a fraction of these will get any support.

This directly contravenes the Equality and Human Rights Commission’s (EHRC) ‘article 27’ which refers to work and employment of the disabled. It states that disabled people have the right to employment and that they should not be discriminated against, (for more information here’s the link), but that they are also to be “protected against forced or compulsory labour”. The British government agreed to this, (their one exclusion was with regard to the armed forces, which was challenged by the EHRC). And yet the British government is now openly contravening this across the board.

As many of you will know, CRPS is known in the USA as the ‘suicide disease’.  (I won’t go into why here as it would be a-whole-nother post, but if you want to know more about CRPS please take a look at this page). It concerns me hugely that seriously ill individuals who struggle daily to cope with their conditions will be put through a stressful process which will negatively impact further upon their health. The 87% (or 86% if you remove the ‘fakers’ percentage) declared fit for work whilst knowing that their conditions cannot cope with it are in a terrifying predicament. Particularly if the suddenly absent monetary support requires a number of working hours that cannot be built up slowly and steadily to reduce the inevitable health impact.

For anyone able-bodied who finds themselves in this situation the negative impact on the body is severe, so for someone with a chronic illness…, well, where do I start? Healthy people understandably experience depression under these circumstances. Chronically ill people experience depression, anxiety, fear, even terror because of the inevitable increase in their already severe symptoms. This is particularly the case for anyone who’s disability involves the nervous systems, autoimmunity, neurological deficits, neural rewiring/chemical imbalance, … in fact.. exactly those disabilities which get disregarded by these unthinkably blinkered directives.

Bearing that in mind, parliamentary figures that have recently come to light show that during the three years ending in October 2011, 31 people declared fit for work died during their appeals. However, The Guardian reported that Panorama’s investigation found that 32 people who were pronounced fit for work have subsequently died, not overall, ..that’s 32 people dying every week from January to August of 2011. There is no breakdown of this figure, so we currently do not know how many of those individuals died owing to stress induced health escalations, how many to more direct effects on physical health and how many committed suicide. But the mere existence of a death toll demographic is horrifying enough. Yet the tick-box assessments continue.

As a CRPS patient, suicide is sadly a familiar theme. Severe conditions which are nonetheless ‘invisible illnesses’, do result in suicide when the distressing day-to-day climb steps over into the impossible. Every human being can only take so much, and in the global online community we hear about fellow patients who have had some recent hiccup in their medical lives, (be it loss of meds, a knowledgeable doctor or financial support), and that they chose to step over that edge. Not because they wanted to die, but simply because they couldn’t continue to live in those worsened circumstances.

Many CRPS patients that I’ve spoken to have stood at the edge. To come back from there takes monstrous effort and huge strength of character. Those patients are not weak, they are strong beyond most people’s imaginings. Many patients live their lives with that edge always in sight.

Today I read a comment on an online post about these benefit changes which recognised the suicide risk involved. In response to that was a further comment from one patient who already knew of two young people in their area who had killed themselves as a result of the benefits changes.

Various individuals have started online petitions on the UK government website. I heard a few days ago that these petitions are repeatedly getting hacked and signatory’s names removed. I would like to post a link to these petitions so that you can have the opportunity to add your voice, and may well do so, but I am cynical about whether your voice would still be there at the end petition date. At this point it’s all beginning to feel a little Orwellian. (Later addition to this post: two petitions had finished recently, there is one still open until 1st November. I’ve included the link below so please please add your name before then, x)

Of course the foreign IT company is doing such a grand job of ripping vulnerable people’s lives apart that they have also been awarded the contract to assess with regards to the other disability benefit (Disability Living Allowance). This benefit does not depend on income as it is for any disabled person to put towards travel to appointments, hospital car park costs etc, which is why the amount awarded varies depending on how the disability affects each individual.

The recent media storm where journalists finally seem to be catching on to the idea that people are suffering as a result of this reform has enabled the word to get out, but is it enough? After so long with the general population getting the horrifically wrong idea that the disabled are scroungers, are they really going to take this enlightenment on board? Or are they going to think it’s some sort of ploy by the alleged disabled scroungers?

The media may well slip into silence again as the ATOS assessors are now being asked to sign the official secrets act. Unnecessary on top of their existing professional ethics, and unrequired for the years so far until the recent media nosiness into the behind-the-scene workings. ATOS claim this is normal procedure that’s been in place with other contracts for years, but the key point to note here is that it was not normal procedure for the Work Capability Assessment for years… but now it suddenly is.

Shockingly there is also a dastardly ‘clause 99’ in the Welfare Reform Act which stipulates that before a disabled person can appeal against a Department of Work and Pensions (DWP: the benefits department) refusal for benefit after assessment…. they must first get the DWP to reconsider it. Yes, that really is exactly as it sounds –if the DWP says no, you can ask nicely, but if they still say no then you are not allowed to appeal. No appeal. End of. If the assessor made an error, if your health condition has been misunderstood… tough…. there is no appeal. This was questioned in 2011 and the answer was clear:

“…to ensure that fewer people end up going to appeal and that there are fewer successful appeals, because long waits for successful appeals serve nobody’s purpose.” 

–          Chris Grayling, Minister of Work and Pensions

(Elle and the Auto Gnome says: “Ahem… serves no purpose? Except, of course, that of the genuinely disabled person….”)

Grayling expanded by saying that the intention was to get it right in the first place….

…Erm….is that why they hired an IT firm to do a tick-box version of a really complex healthcare/psych’ based assessment?

We can scream and shout at ATOS all we want, but they applied for the contract and won it. They are doing as requested. The government refuses to make available the full contract. With the Freedom of Information Act in place, this withholding of requested information is concerning, to say the least, but ATOS is doing what the government has told them to. And that is why it is so particularly terrifying.

But multiple charities and voices for the disabled are now finally getting heard above the white noise of ignorance and disinterestedness. It is notable that the British Medical Association (BMA) is now openly against the Work Capability Assessment. But with the assessments running since 2008 and due to end for 2014, what are our chances of a do-over?

What can we do to help these vulnerable people?

Here’s a letter to quickly download and send to your G.P. to ask for their support in opposing the inappropriate WCA, written by the Social Welfare Union, http://socialwelfareunion.org/archives/967

Here’s the main official e-petition on the UK government’s website:  http://epetitions.direct.gov.uk/petitions/20968  This petitioncloses on 1^st November 2012. It is already number 11 on the petitions list, can we please get it into the top 10? Please ask your friends and family to sign this. It takes but a moment and they will be glad to help someone they, or someone close to them, cares about, x

Here’s the new petition link (added to this post August 19th, 2012) which asks for a more humane system than the one causing 32 deaths per week http://you.38degrees.org.uk/petitions/stop-the-welfare-reform-death-scandal-3

I am aware also that DPAC is planning their own ATOS games to coincide with the Paralympics (Mon 27^th – Fri 30^th August), they have mega respect for the paralympians it is no slight on them, it’s their way of hounding ATOS. http://www.dpac.uk.net/2012/07/our-atos-games/

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References

Baumberg, B. (2012-08-07) ‘In defence of benefit take-up statistics’ http://inequalitiesblog.wordpress.com/2012/08/07/in-defence-of-benefit-take-up-statistics/

Begg, A. (2012-08-03) ‘It’s not the benefits fraudsters who are targeted in the media, it’s the disabled’ in The Independent http://blogs.independent.co.uk/2012/08/03/its-not-the-benefit-fraudsters-who-are-targeted-in-the-media-its-the-disabled/

Blog post on “Benefit Scrounging Scum: life in a broken bureaucracy with a bendy and borked body” (2012-08-03)(two authors, Sue and Kaliya, one of whom is a professional journalist) http://networkedblogs.com/ABpDD

Brennan, S (2012-07-31) ‘Sick and disabled people are being pushed off benefits at any cost’ in The Guardian, http://www.guardian.co.uk/commentisfree/2012/jul/31/disabled-people-benefits-panorama

“Britain on the Sick” by Channel 4’s ‘Dispatches’, http://www.channel4.com/programmes/dispatches/articles/britain-on-the-sick-reporter-feature

Cassidy, S (2012-08-03) ‘Half a million disabled people may lose benefits under reforms’ in The Independent http://www.independent.co.uk/life-style/health-and-families/health-news/half-a-million-disabled-people-may-lose-benefits-under-reforms-8002288.html

Convention on the Rights of Persons with Disabilities, Office of the United Nations High Commissioner for Human Rights (pdf available via the following link…) http://www2.ohchr.org/english/law/disabilities-convention.htm

Disability and Equality Act 2010, UK Government website (direct.gov), http://www.direct.gov.uk/en/disabledpeople/rightsandobligations/disabilityrights/dg_4001068

“Disabled or Faking it” by BBC2’s ‘Panorama’, http://www.bbc.co.uk/blogs/ouch/2012/07/panorama_disabled_or_faking_it.html

Dunn, A (2012-08-02) ‘Don’t misuse your disability benefits – the DWP might’ in The Independent http://blogs.independent.co.uk/2012/08/02/dont-misuse-your-disability-benefits-the-dwp-might/

Equality and Human Rights Commission, ‘Article 27: Work and Employment’, http://www.equalityhumanrights.com/human-rights/human-rights-practical-guidance/guidance-from-the-commission/a-guide-to-the-un-disability-convention/part-2-know-your-rights/article-27-work-and-employment/

Hundal, S. (2012-04-12) ‘EXCL: ATOS forces doctors into secrets act’ http://liberalconspiracy.org/2012/04/12/exclusive-leak-atos-forces-doctors-to-sign-official-secrets-act/

Income Support benefit, UK Government website (direct.gov), http://www.direct.gov.uk/en/moneytaxandbenefits/benefitstaxcreditsandothersupport/on_a_low_income/dg_10018708

Malik, S. & Gentleman, A. (2012-04-12) ‘Private sector medical staff assessing benefit claims told to sign Official Secrets Act’ in The Guardian http://www.guardian.co.uk/society/2012/apr/12/atos-doctors-sign-official-secrets-act

Pollard, T (2012-08-02) Blog guest post by mental health charity ‘MIND’ who are working with other charities and the UK Government to try to make changes to the malfunctioning  assessment procedure http://networkedblogs.com/Ayokm

Poulton, S. (2012-05-25) ‘Oh dear, Dave. Now GPs have turned on you. Time for an exit strategy on the disabled, perhaps?’ in Mail Online http://www.dailymail.co.uk/debate/article-2149854/Oh-dear-Dave-Now-GPs-turned-Time-exit-strategy-disabled-perhaps.html

Scope CEO Blog (2012-07-30) ‘Watching the dispatches undercover footage’ http://www.scope.org.uk/news/blogs/scope-blog/dispatches-wca

Social Welfare Union clarification on the percentage of appeals which are successful, 2012-08-10, thank-you, x

Social Welfare Union (2012-08-05) ‘Old debate sheds further light on the right to appeal benefit decisions’ http://socialwelfareunion.org/archives/912

Social Welfare Union (2012-08-07) ‘Universal credit doesn’t help tenants off benefits and into work’ http://socialwelfareunion.org/archives/951

Social Welfare Union, (2012-08-05) ‘New disability tests will ‘cause suicides’ say disability campainers Disabled People Against Cuts (DPAC)’ http://socialwelfareunion.org/archives/921

Work Capability Assessment (WCA) list of tickbox directives, http://www.tameside.gov.uk/esa/wca

Other links:

http://www.disabilitynow.org.uk/living/features/living-with-the-fear-factor

http://diaryofabenefitscrounger.blogspot.co.uk/2012/08/what-is-overall-impact-of-cuts-to.html?spref=fb

‘Thousands of disabled people have signed an open letter criticising their portrayal as “benefit scroungers” in the British media’ (2012-05-31) http://www.presstv.ir/detail/244025.html

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http://atosvictimsgroup.co.uk/2012/08/06/dwp-admit-the-cost-of-audio-recording-devices-for-wca-they-cant-use-the-excuse-theyre-too-expensive-any-longer/

http://www.dpac.uk.net/2012/07/new-survey-to-collect-your-experiences-of-atoswork-capability-assessment/

http://www.dpac.uk.net/2012/07/having-your-wca-recorded/